tag:blogger.com,1999:blog-65423782225487867272024-03-17T22:33:24.862-07:00Julies Myeloma Moments, Musings and Living Life with a Bucket List Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for
reading, caring and commenting!Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.comBlogger372125tag:blogger.com,1999:blog-6542378222548786727.post-70526672341536181152021-04-11T11:38:00.063-07:002021-04-13T17:54:38.951-07:00HOME and Big Challenges- Updated...<p><b>4.8 - </b><span><b>Hospital Arrival</b>- during the day, my chemo Nurse arranged Admission (8pm) and Private room for me in advance for my 2 bags of Platelets and 2 bags of Blood :))<span> Scott had to take me in and out, in a wheelchair. How sad is that. Pallative delivered one here a few weeks ago :((</span></span></p><p><b>4.9 - </b><span><b>Hospital all night long</b>, came home in the late morning exhausted. No Sleep. Wonderful Nurses, just too much monitoring all the time, but I understand why.</span></p><p><b>4.9 - Home,</b> <span>Shower, sleep, super weak legs, problems from that, etc. Taking Zarxio to raise WBC.<span> </span><span> </span></span></p><p><b>4.11 - </b><span><b>Pallative Home Health Nursing Team </b>came<b> </b>and will come again 4.14 to set me up with more help. Get this! It's the same wonderful team we had for Jim. They cannot believe how fast I've gone down hill, and how Myeloma is totally eating me up alive. I'll arrange for a Remote bed, continue with the Phlebotomist coming here for weekly for labs. as I'm too weak to go anywhere. Will take more steroids for strength and functioning. Cannot believe the weakness I've been experiencing for weeks, months..., especially recently. Never appreciated the power and job of Red Blood cells. Used to always worry so much about my super Low Immune System. Now, I would be happy to completely completely completely Bubblize myself and not worry about my low WBC, if I could strengthen my Reds for mobility and functionality. Getting places in my house is a big challenge and a "catch 22", and scary. But I force myself every morning to get to the bathroom, then walk to the family room from our bedroom so I don't loose muscle and strength. I will not stay in bed all day, besides it's not comfortable, and the little doggies need outside in the morning. I'm also in such a "catch 22" where my stupid Extramedulary Alien Mass won't let me eat much, so I get more weak from not eating much, preventing me from strengthening my legs, arms, body, etc for mobility. So then my mobility and functionality is so super weak, I fear not being able to get off the pottie, or falling. So then I eat and drink less, so I am not challenged by bathroom event all the time. But that's not good either, as I'm so thirsty all the time, and my body needs hydration, or stupid Extramedularlly tumors are sucking up all my hydration... But often when I do eat... a few hours later... oh boy, move out of the way fast... I laugh, cry at my circumstances. Worst case, I will crawl to my bed or couch in our bedroom for stability getting up. How ridiculous is this, for me, used to be "cowgirl Julie. And of course, Nothing really tastes good anymore. I watch the travel cooking channels and dream of eating some of the things I see there. Oh well, next life... Doggies are getting lots of left over treats now lol, cuz I barely eat anything I prepare. It's all so CRAZY! And to think who I used to be :((</span></p><p><span><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-U8xlvwxdJAw/YHNB2oO91jI/AAAAAAAAHcI/LGIZG2BUWeU5zGz2eQSpeHGnHD9QzY84ACLcBGAsYHQ/s315/8h.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="315" src="https://1.bp.blogspot.com/-U8xlvwxdJAw/YHNB2oO91jI/AAAAAAAAHcI/LGIZG2BUWeU5zGz2eQSpeHGnHD9QzY84ACLcBGAsYHQ/s0/8h.jpg" /></a></div><div style="text-align: center;">LOL Hospital blanket, not Spa robe lol</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><strike>Lots to tell, be back later. Thanks for caring and reading as you do. This is the best way to let everyone know what's going on with me... xoxo </strike></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><i><u>4.12.21 UPDATE:</u></i></b></div><div style="text-align: left;">- <b>Dr appt on Wed (4.14)</b> for my eye status (side effect from Blenrep and Low Red Cells). Monthly meeting with my regular Dr.</div><div style="text-align: left;">- <b>Since being on Blenrep, </b>I have experienced (a week after infusion), low grade fever for a few days at night. Fortunately that has been gone for over a week. And did I mention previously, I had more 24hrs of nose blood hemorraging. Couldn't believe what few Platelets causes! That finally ended when I took steroids. </div><div style="text-align: left;">- <b>Blurry vision,</b> especially Left eye, but that could be from the low Red Blood too</div><div style="text-align: left;">- <b>Grew another</b> weird Right side soft Hematoma tumor out of no where, fast, between my Collarbone and Neck. Has gone down a lot thankfully!</div><div style="text-align: left;">- <b>Grew some weird</b> black and blue bump, lump on my inside Right side, inside my mouth, cheek. Mostly gone, thankfully!</div><div style="text-align: left;">- <b>Have become more weak</b> and imobilized each day. Pain keeps increasing on my Right side leg. Trying not to eat Tylenol like candy. Main thing that helps always, with EVERYTHING for me is Steroids, as they are such a powerful anti inflamatory. Starting to take one 4mg before bed nightly, or first thing in the morning. I always told my Drs that when the "late stage" comes, Dexamethasone Steroids will be my Go To medication. All the other hard core drugs would probably affect my mental state and psychological processing, which I don't want.... But who knows, maybe I will. I don't need to relax, I don't have "anxiety", I just want to feel good and be painfree, with my mind intact and get back to mobility options. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>THANK YOU SO MUCH EVERYONE FOR ALL YOUR CARDS, CALLS, MESSAGES, ETC. </b>Sorry I cannot always answer you always, as I am so beat up physically. Thank you for all your offers of help and assistance. My Adult kids come daily to help with all the outside animal chores. Can't believe all the critters have greater logevity that me and Jim! We used to talk about that... never expected it...</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-eFWG7dPOj8c/YHUdio1HakI/AAAAAAAAHcQ/-OnX_8NuIFsT3MA-7GLj5JcTCDx4qVhXQCLcBGAsYHQ/s960/12dw.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="874" data-original-width="960" src="https://1.bp.blogspot.com/-eFWG7dPOj8c/YHUdio1HakI/AAAAAAAAHcQ/-OnX_8NuIFsT3MA-7GLj5JcTCDx4qVhXQCLcBGAsYHQ/s320/12dw.jpg" width="320" /></a></div><div style="text-align: center;">Nala Hanna Jack </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/--PZL1OynZ54/YHUdzOn4a7I/AAAAAAAAHcc/W4vNiV3_HXAPuQMKZksMGXBW2dBkayuXQCLcBGAsYHQ/s960/12kh.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" src="https://1.bp.blogspot.com/--PZL1OynZ54/YHUdzOn4a7I/AAAAAAAAHcc/W4vNiV3_HXAPuQMKZksMGXBW2dBkayuXQCLcBGAsYHQ/s320/12kh.jpg" width="320" /></a></div><div style="text-align: center;">Kristin</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-2jm22jTfJUE/YHUeBoYjMXI/AAAAAAAAHco/uFbWwP3Z2HkNtQf6vwTobrUec5vRod2PwCLcBGAsYHQ/s960/12svd.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="833" height="320" src="https://1.bp.blogspot.com/-2jm22jTfJUE/YHUeBoYjMXI/AAAAAAAAHco/uFbWwP3Z2HkNtQf6vwTobrUec5vRod2PwCLcBGAsYHQ/s320/12svd.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">Scott</div><br /><div style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Cqc-I2YCkxw/YHUeKgoTJCI/AAAAAAAAHcs/jrLXZz_YU_w54ZKRPpC7isPfbd9oRGEMACLcBGAsYHQ/s960/12avh.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" src="https://1.bp.blogspot.com/-Cqc-I2YCkxw/YHUeKgoTJCI/AAAAAAAAHcs/jrLXZz_YU_w54ZKRPpC7isPfbd9oRGEMACLcBGAsYHQ/s320/12avh.jpg" width="320" /></a></div><div style="text-align: center;">Alissa</div></div><div style="text-align: left;"><br /></div><div style="text-align: left;">So thank you so much for your offers of HELP! At this time, only help I need, is too sporatic for an outsider to help LOL. You'd have to be 24 7 "on call", or I'd need an old fashion bell for help needed, like when I need help getting up from bed, getting up in the bathroom or other areas of the house, then doggies need letting out in the morning, the kitty liter box needs to be cleaned several times a day, as poor Luci has GI issues. Yes, so many of you would say donate the animals somewhere, but No, we made a lifetime commitment to them. Did I mention the Turtle, Tortoise, wild Birdies, Chickens, etc too? And it all used to be so routine and easy for me and Jim...</div><div style="text-align: left;">And all I want now, is to be out there with all of them... What happened? Why? I just don't understand. I am needed here, "not there"...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you Everyone for Caring as YOU do xoxoxoxo</div><div class="separator" style="clear: both; text-align: center;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com18tag:blogger.com,1999:blog-6542378222548786727.post-89182418021883613452021-04-08T18:27:00.018-07:002021-04-13T16:28:16.701-07:00Happy Birthday Best Daughter, Hello ER today!!! We were in the Hospital together 33 years ago!<p> 4.8.21</p><p>33 years ago, I was in the Hospital having my daughter Alissa. Ironically today, I'm headed back to the Hospital, this time ER, the place I've been trying to avoid, but can't now, due to needing 2 bags of Plateles, and 2 bags of Blood. My levels are so ridiculously LOW, it's RIDICULOUS!!!! Stupid Myeloma, I just hate you so much!. Myeloma trying to kill me in any way it can, and Covid not allowing us to celebrate together. Would have had a party in the Hospital ER with all the kids while getting the Blood Products. Oh this life is so IRONIC, right!!! What a difference 33 years makes!!!! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-E7TAc4xJoKY/YG-s2jd8RTI/AAAAAAAAHcA/7RmJQiMi4J0smVXhAq3qX1mh89sRASxWQCLcBGAsYHQ/s275/48er.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="183" data-original-width="275" height="266" src="https://1.bp.blogspot.com/-E7TAc4xJoKY/YG-s2jd8RTI/AAAAAAAAHcA/7RmJQiMi4J0smVXhAq3qX1mh89sRASxWQCLcBGAsYHQ/w400-h266/48er.jpg" width="400" /></a></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;"><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;">My daughter and I were in Hospital together, 33 years ago! </blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;">Today, a totally different story. Stupid Myeloma</blockquote><p style="text-align: center;"> </p><p>So much has gone on in the last 24 hours..., medical communication misunderstandings, etc. I should have had all the complex blood typing yesterday so I could have done the Blood Transfusions at the Chemo Lab today, not E frkn R!!! But then again, the amount of Blood Products I need to keep me alive, take too much time for the Chemo Lab, as they close a 5pm, so I'll be in the ER Hospital all night long. My blood has become so complex because of all the chemo, immunotherapies, 2010 stem cell transplant, etc, it has to be put thru the dishwasher and radiated like non other! Can you believe all of this? I can't! Can you please help me STOP this insane movie. I do not want this to be my life!!!!</p><p>So all Bday Celebrations will have to wait, I will hope I will survive all the COOTIES in the Hospital ER, and hope I make it outta there. I told the kids, if it looks like I'm passing off to the next realm, get me the heck outta there, sign all the papers, pull that plug on the Blood and get me home. Or put the IV stand in the car, and let's gooooooo... Party at Visneyland this weekend if that happens. Should I be in a Hospital bed in the backyard, or inside the house, looking out? </p><p>Leaving soon and the laughs are that I ate Olive Garden leftovers from last night. Fk u Abdominal Alien Mass, I ate today after coming home from the Blood Lab crazy blood typing labs, and ate. Yes move aside you resident softball size Extramedullary waste of my body space Mass, I had grilled chicken and grilled broccoli, and with my GI luck, I'll probably have to poop when I arrive at ER. Hopefully not before LOL. One time when I had a bag of hydration with my chemo and blood products, and a bottle of my personal water, I stood up from the chemo chair.... and oooppps I "watered the floor" LOL. Scott could not believe it when he picked me up, so from now on he brings a few doggie pee pads for me sit on... ahahahha, or the Nurses gives me some from my chemo chair station. Overreaaction I'd say, my pee is so clean and chemo'd it probably cleansed his seat, ahahahahaha!</p><p>OMG, can all this be REAL??? Come join me in ER, let's make it a PARTY... (Steroids talking)</p><p>Happy Birthday to Alissa today, Scott on March 25 and wife Ashley on March 4. Thank goodness I made these landmarks!!! </p><p>Sorry for my Fk u's, makes Scott crazy as I was the "perfect mom" lol. Alissa just laughs and says, "your're dying Mom, so it's ok, you're allowed to cuss," , she encourages me to cuss, and we laugh together :)) </p><p>Alissa, "ok Mom, time to go "Party with your Platelets!"</p><p><br /></p><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com6tag:blogger.com,1999:blog-6542378222548786727.post-81705975372868064502021-04-07T17:17:00.075-07:002021-04-07T23:04:50.579-07:00NOT!!!!!! MY LAST POST! IT CAN'T BE! <p> 4.7.21</p><p>Just wrote my Dr about all the things happening to me. Don't even know if I wrote it all here previously...</p><p>4.6.21 ER Dr called <b>last night</b> re my labs taken by home health Nurse at home. Dr was very worried about my levels... GO TO ER she pleaded ....Again I said noooooooooooooooooooooooo, I will not go to ER, I will NOT DIE in ER. </p><p>Platelets 15 or 16, Used to be in the 100s. Hemoglobulin super low too, forget level... will look up... Other Labs not good...</p><p><b>Today, 4.7.21 </b><b>My wonderful "regular" Charge Nurse just called me after reading my emails to my DR, Go to ER NOW she begged. Spot in my EYE not good sign. Bledding inside. Nooooooo, I will not go to ER, I said crying.. S</b>pot probably from new chemo Blenrep. Left side eye blurry all day. Blood Alien floating there, changes colors too, if I look at colors lol, when I cover my Right side eye. Fk you side effects and myeloma trying to Kill me. I'm not ready to die... I have too much I still want to do. I cheated myself out life, when I put so much off...</p><div style="text-align: left;">I can still see outside from our kitchen window, blurry, but I can see. Too weak to go outside. Scott will get me Jim's walker tomorrow. I understand more and more of Jim's situation. I See my beautiful property Jim and I created for nearly 29 years. I can still hear, talk and cry. I can see my beautiful Ranch, Animals, and Kids helping everyday. Kids are coming soon to take care of the Animals and bring food, altho there is plenty of food here I can't eat, thank you stupid Extramedullary Mass. I plan to eat, even if stupid Extramedullary Mass objects. Fk you Myeloma and Masses. Mr Tortoise just came out of Hibernation a few days ago. Alissa got beautiful Romaine lettuce for him. Tormorrow is her Birthday. I made it! Scott's was 2 weeks ago. Ashley's was beginning of the month. Doggies Jack and Coco try to find the lettuce, and eat it. Funny, not funny. We were also going to order Sand for the horse Arena, as the old horses have sores from lying down on the hard surface in some places. Jim used to order soft Sand annually. He would exhaust himself, and get blisters raking it smooth. Later in life, Scott would tractor it for him. Jim used to. Sadly I wouldn't know now as I haven't been out there in weeks and weeks.., can't go out there anymore, risking trip and fall. The chickens are finally laying both Brown and Green Eggs. Wish I could eat the fresh eggs. They Look good, but I'm too full from the Frikn Abdominal Extramedullary Mass Alien taking up all the belly room. I have so much to live for. I am sooooooooooo Sad, so Angry, so Shocked. Was not supposed to be my life... Wanted to do so much with our animals and people and house. Wanted to just sit outside in the sun after an indoor career all my life. Wanted to bake like I never had time for. Just do "domestic things" I never had much time for previously. Wanted to organize things I never had time for. Have clothes I wanted to wear. Play tennis with girlfriends and chat superficially. Get my car washed. I just want simple, ordinary things I rarely had time for before, because I was always helping, rescuing others. No regrets on that, I just didn't balance my life well. <b>Gave too much away, cuz I thought I had so much time ahead of me. Ha... Thought I had so much time ahead of me...</b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Talked to my dad last night. He's 94. He said I can't go yet. He needs me. He wants us to be around another 10 years lol. He probably will, great health, but me ???? Ha. He's a WWII Vet. Look how long so many of them have survived in a healthy way, even with smoking, drinking, etc. Into their 100's. Very Happy for them. So many wonderful people out there on this globe, living a good life. What did I do to piss off the Universe? I hate you Myeloma. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>4.7.21 Charge Nurse just called.</b> She's so sweet. Stayed late on her shift to call me. "Go to local Chemo Lab tomorrow, if you don't want to go to ER now".. "Maybe we can arrange Platelets and Blood for tomorrow?" I'm Not doing any chemo tomorrow", I cry. Just Steroids," I cry. Maybe I'll get another day. I hate you Myeloma... No I will not let you win. I will not die in a hospital, even tho the staff is wonderful, and caring. I will not die without my family and animals and friends around me... amaybe Covid rules allow for BIG parties now???</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Why do I still write and update, you wonder... it's cathartic for me, and I won't let Myeloma take my last thoughts and freedom away. I will write from my death bed, or have my kids update here... we'll see... my outside view is still so beautiful, even tho I cannot easily go out there... it's not that ER that's so bad, it's my home I need finality with, and this is where I will pass, just like all our animals and Jim did... I hear our beautiful Foutain. 15, 20 years old? I had it fixed last year so Jim could enjoy it. He did. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for reading and caring as you do... Thank you for wanting to come over and visit. I look awful, feel so weak, sometimes worry I can't get off the pottie, even tho Scott's metal bars are there. Scary. I will crawl to to the bed lol.All the canes and walkers I bought Jim have come full circle now. I still have my brain and my voice and I can still be in partial "control" here, unlike hospital ER, even tho the staff is wonderful and will care for me kindly. I will order a hospice bed soon. Too hard to get in and out of our bed. I remember Jim having that problem. I will probably have them set it up like I did for Jim, in the family room, so visitors can come see me easily. Be clean, wash up, wear shoe booties lol. Or maybe, just maybe, things will turn around, and this was all just a "practice run" or joke was on me... </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/_9TShlMkQnc" width="320" youtube-src-id="_9TShlMkQnc"></iframe></div><br /><div style="text-align: center;">Live Like You Were Dying- Tim McGraw </div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/NIuABvRetM8" width="320" youtube-src-id="NIuABvRetM8"></iframe></div><br /><div style="text-align: center;">Happy Is As Happy Does- Kenny Chesney </div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-12950291061577963372021-04-03T21:30:00.001-07:002021-04-07T16:53:23.392-07:00I Spoke Too Soon... April Fool's on Me!!!<p> 4.3.21</p><p>Hello Friends, </p><p>I'm way too beat up to write much, but I had to update, so you all don't have my other post as what's actually going on...</p><p>Later on Thursday night, APRIL 1, I had two CRAZY things happen. </p><p>1- I suddenly got a NON STOP bloody nose hemorrage on my Left side. My night was absolutely miserable, and I thought, ok Myeloma, this is IT, you got me, we're done... I won't describe all the bloody details, but let's say I went thru several several boxes of Kleenex all night long, bleeding out and and choking on huge globs and clots in my throat, that I had to spit up, almost aspirating on... I really thought I would Hemorrhage to death. Yes, I know, call my Dr, go to ER... but why, for what? What are they going to do different for me there, that I can't do at home... except give me more bags of Platelets and Blood, but also get Pneumonia or Corona, etc at the same time... </p><p>So I suffer at home,... </p><p>2- When I woke up, and you won't believe this... I suddenly and I mean suddenly realized I had developed a crazy giant soft Hematoma Extramedually tumor mass on my Right side collarbone area like I developed one my Right side, last summer on Elotuzumab!!! This THING seriously was going to choke me, just like before, last summer/fall. It grew between the Left side collarbone and the neck. What the heck! This Bleeding and Monster Tumor stayed there until I took steroids (Sat 4.3), after another night bleeding out, and choking, I took two 4mg Dex Steroid pills, knowing they are prescribed for both situations like this,... as anti inflamatories...</p><p>OMG is Blenrep going to do a similar thing to me as Elotuzumab did, which I mention all the time, thinking it caused the evolution of my Extramedullary Myeloma??? </p><p>I slept most of the day, tried to eat this evening, Scott came over to do the animal chores and take out bags and bags of bloody kleenexes lol. So how am I doing right now, Weak, tired, overwhelmed, so done with being SICK all the time, ready to try nothing but Steroids, but scared to do that. As I discuss with my adult kids all the time, Am I just existing and prolonging death, or am I living and prolonging life, in hopes that a "miracle might happen, and I can survive this EVIL DEVIL of a cancer. Just had NO idea what would eventually happen to me :(( </p><p>Feeling stuffed from 2 eggs, 1 avocado, exhausted from the 48 hours of nose hemoraging, but good news, I think the Steroids are helping. We'll see...</p><p>Just had to update all of you, as I feel and look awful and seriously cannot believe what is happening to me :((((</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-sVh9kDCISIw/YGlAtIUQTfI/AAAAAAAAHb4/2tOf-kQRWJYpKtL73I9sQmkHEpKuOJFZwCLcBGAsYHQ/s1280/43pl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://1.bp.blogspot.com/-sVh9kDCISIw/YGlAtIUQTfI/AAAAAAAAHb4/2tOf-kQRWJYpKtL73I9sQmkHEpKuOJFZwCLcBGAsYHQ/w400-h225/43pl.jpg" width="400" /></a></div><br /><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com4tag:blogger.com,1999:blog-6542378222548786727.post-49796721402629865402021-04-01T20:24:00.035-07:002021-04-03T20:47:00.169-07:00Wish It was April Fool's Day on You Myeloma!<p> 4.1.21</p><p>Hello Friends and Loyal Readers- </p><p> I used to post a silly April Fool's blog, but not much is funny or silly in my life anymore. I'd say something about being "Cured", and I don't have to do chemo or treatments anymore, etc. hahahaha what a joke on me! So no Jokes today, here's the real life Update:</p><p>First of all, thank you so very much for all your loving, caring and encouraging comments. You do really very much "matter" to me, and what you write and comment, I appreciate you being out there and connecting with me, very very much!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-4lpBcnap_sg/YGY1igvDCMI/AAAAAAAAHaA/bGotRKRgid0bHDzBO6yYzTaAHpYNtwSDgCLcBGAsYHQ/s845/41a.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="321" data-original-width="845" height="153" src="https://1.bp.blogspot.com/-4lpBcnap_sg/YGY1igvDCMI/AAAAAAAAHaA/bGotRKRgid0bHDzBO6yYzTaAHpYNtwSDgCLcBGAsYHQ/w400-h153/41a.jpg" width="400" /></a></div><div style="text-align: center;">Happy Spring, Happy Easter 2021</div><div style="text-align: center;"><br /></div><p>So for as long as Myeloma has been affecting my life, I was very very fortunate that I did not experience ALL the Myeloma symptoms ALL the time, nor was I completely aware of all the individual side effects of all my CBCs, bone damage, tumors, fractures, etc. I was aware what meds to take, side effects from them, and I read so much, and I asked so much, but it all still remained so surreal to me, and it always seemed to somewhat resolve itself with time, medication or a chemo change. I was "tortured" in intense incriments, surprised by what my body could do to me, based on the where the attack was. Each symptom was different, each side effect was different, but it wasn't my whole body, all the time thankfully! And again, there always was some sort of resolution eventually, be it GI meds, body pain meds, bone pain meds, fracture pain relieved by Radiation, etc. Hopefully I am not diminishing the depth and extent, and pain of the past 11 years, as it was truly awful. but what I have been going thru since last summer 2020, just gets worse and more inconprehensible.</p><p>At this time, my IGA Immunoglobulin labs are sooooooooooooooooooo HIGH the testing machine cannot even measure it. Normal is between 70-400 and shows at > yes, a greater than sign > .... now stuck at > 5933. </p><p> <b><u> IGA</u></b><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-fXOMRQgTipE/YGZjoR2VmKI/AAAAAAAAHaI/P4V-1isdQNcCLPiOHjqyISrOeRVmu-P_gCLcBGAsYHQ/s1607/41iga.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1607" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-fXOMRQgTipE/YGZjoR2VmKI/AAAAAAAAHaI/P4V-1isdQNcCLPiOHjqyISrOeRVmu-P_gCLcBGAsYHQ/w269-h400/41iga.jpg" width="269" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="text-align: center;"><span style="text-align: left;">Ha! Maybe this is my Joke on me LOL... > > ></span></div><div style="text-align: center;"><span style="text-align: left;"><br /></span></div><div style="text-align: center;">Here's my other labs:</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><b><u>BETA2 MICROGLOBULIN</u></b></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-yJR8DFRhM8w/YGZk4gE6LJI/AAAAAAAAHaQ/wapgtb7cvYY0-bzYsxvxrf02bD66z4m8QCLcBGAsYHQ/s1896/41b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1896" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-yJR8DFRhM8w/YGZk4gE6LJI/AAAAAAAAHaQ/wapgtb7cvYY0-bzYsxvxrf02bD66z4m8QCLcBGAsYHQ/w228-h400/41b.jpg" width="228" /></a></div><div style="text-align: center;">UNBELIVABLE !</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-fbk1d5lro1Y/YGZ1ThrNp0I/AAAAAAAAHao/YsO-8pIWX7s0-KNVQS_rA4u9yEjU2_B-gCLcBGAsYHQ/s2005/41lc.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2005" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-fbk1d5lro1Y/YGZ1ThrNp0I/AAAAAAAAHao/YsO-8pIWX7s0-KNVQS_rA4u9yEjU2_B-gCLcBGAsYHQ/w215-h400/41lc.jpg" width="215" /></a></div><div class="separator" style="clear: both; text-align: center;">Never had <b>Light Chain</b> issues before.</div><div class="separator" style="clear: both; text-align: center;">This is insane!</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-C3Q2dlvbYZg/YGZ1tFcpfJI/AAAAAAAAHaw/Hlggi9bnt40SY94JwzoCZ5E7sdV_tL1cQCLcBGAsYHQ/s2005/41pl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2005" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-C3Q2dlvbYZg/YGZ1tFcpfJI/AAAAAAAAHaw/Hlggi9bnt40SY94JwzoCZ5E7sdV_tL1cQCLcBGAsYHQ/w215-h400/41pl.jpg" width="215" /></a></div>REALLY??!!! </div><div style="text-align: center;">NEVER HAD <b>PLATELET</b> ISSUES</div><div style="text-align: center;">IN ALL MY YEARS OF MYELOMA!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-6opyMt1v3sk/YGZ2KsHk-NI/AAAAAAAAHa4/jYtowDQHVykdkDrxafjh1TJiBRYg_NRlgCLcBGAsYHQ/s1599/41mp.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1599" data-original-width="1079" height="400" src="https://1.bp.blogspot.com/-6opyMt1v3sk/YGZ2KsHk-NI/AAAAAAAAHa4/jYtowDQHVykdkDrxafjh1TJiBRYg_NRlgCLcBGAsYHQ/w270-h400/41mp.jpg" width="270" /></a></div><br /><div style="text-align: center;">SERIOUSLY! </div><div style="text-align: center;">LOOK AT THE M PROTEIN. </div><div style="text-align: center;">WHEN I WAS DIAGNOSED I WAS</div><div style="text-align: center;">AROUND 4.5</div><div style="text-align: center;">Normal is Zero!</div><div style="text-align: center;">=================================================</div><div style="text-align: center;"><div style="text-align: left;"><br /></div><div style="text-align: left;">Kid you not friends! If I was to just TELL you this, you may not believe me. What's that saying- Numbers Don't Lie! Again, I never knew how weak the human body can become without both Red and White blood support, not to mention FOOD...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">My crazy Abdominal Alien has taken up so much room, I can hardly eat. I am hungry psychologically, and I feel hungry as I write, but it is soooooo uncomfortable to feel full and bloated with basically nothing in my stomach. I made myself 2 eggs earlier and 1 piece of raisin cinnamon bread, and earlier had a protein shake box with some pills, vitimins, and know I should drink more water, but I just can't stand the fullness feeling. Dang you Extramedullary Myeloma. Would just like to insert a needle in you and incinerate you. Wouldn't that be Amazing LOL! </div><div style="text-align: left;"><br /></div><div style="text-align: left;">My memory is going too, not enough oxygen in the blood going to the brain LOL.... So if I recall correctly, last week was putting me on "Pallative Care", and I soon received a "light weight" wheelchair (just like Jim), and then this week they sent a home health care Nurse to do my Labs at home (just like Jim). </div><div style="text-align: left;">Yes, those CBC lab results were alarming, so the the Urgent Care, ER Doctor called me in the evening and said what I am told all the time.... " Get to ER now"... your labs are not good, they're dangerous".... I thanked her asked if she had seen my entire myeloma history, and that I was a 11+ year Myeloma survivor, and my Labs are always LOW, Blah Blah Blah..... I nicely told her I won't go to ER, I will die at home, and I'm scheduled for chemo the next day, so they will call me and give me direction as to what infusions, meds are next, and what we'll do about the lousy labs. She was very kind, and I might have been a bit edgy, as I think I had fallen asleep on my old lady recliner chair LOL...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">So yes indeed, chemo Nurse calls first thing in the morning, that they wanted me to get the chemo clinic asap for 2 bags of Platelets, before my Velcade injection. Ugh, that was 9:00ish I think. Fortunately I had already taken my split dose of 20mg Dex Steroids, so I was ready to be infused in a few hours. I let my adult kids know, and they were so amazing to plan together and split the ride there and back. I received 2 bags of Platelets no problem. No reaction, thank goodness. Then Velcade shot time. I still have big bruise where I asked my Nurse to find that stikn Abdominal Alien Mass a few weeks ago, and shoot it with the Velcade shot LOL. Well we did the same thing again, and I have 2 bruises now on the right side, and have hopefully pissed of the Mass... eh, who cares at this point right. Have a little fun. Play some "hit that Alien Mass Pin Ball" ... ahahahahhaaaa.</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-YkHnbtfU0qE/YGaRGnMpdgI/AAAAAAAAHbQ/jkmyoQpJ5a89iNQb8wvHhdsZsbxRlHHMwCLcBGAsYHQ/s2048/41pl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-YkHnbtfU0qE/YGaRGnMpdgI/AAAAAAAAHbQ/jkmyoQpJ5a89iNQb8wvHhdsZsbxRlHHMwCLcBGAsYHQ/s320/41pl.jpg" /></a></div>Platelets!</div><div style="text-align: center;">This was bag 2, almost done. </div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-tOs7K7ikGNk/YGaRhzXrxmI/AAAAAAAAHbY/kcCbOy9MbKIzDEHtfVyLrWAiSSuw4r4ZwCLcBGAsYHQ/s2048/41bl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-tOs7K7ikGNk/YGaRhzXrxmI/AAAAAAAAHbY/kcCbOy9MbKIzDEHtfVyLrWAiSSuw4r4ZwCLcBGAsYHQ/s320/41bl.jpg" /></a></div><br /><div style="text-align: center;">Blood last week</div><div style="text-align: center;">2 bags</div><div style="text-align: center;"><div style="text-align: left;"><br /></div><div style="text-align: left;">I used to think and say how caring for my hubby Jim was practice for my furture, and some would get upset with me, and say that was a long time away, as Alzheimers is very different than cancer. Well so much of what's happening to me physically, happened to Jim... so ironic, so sad. All the help we gave him, I am now needing. Hard for me get in a car, I use the canes I gave him, I use the wall support bars and floor step ups Scott installed for him, I fear going outside alone, fear of falling inside and out, trouble getting up from the toilet, but Scott's bars are there, I don't have much of an appetite, drink mainly protein shake boxes, even though all food sounds and looks good, can't do many, if any, chores around here, walking from one room to another is a great effort, doing anything is a great effort, can barely get in and out of our bed, unlocking the gates for hay delivery today was an effort, feeding the little doggies is an effort, anything jumping on me hurts and I bleed, writing and talking is an effort, I sorted my laundry a while ago in color piles, and it's still there like that weeks later. I try different foods and they don't taste as I anticipated. I hear from friends wanting to stop by, and mentally it sounds wonderful, but so physically draining. Opening doors and windows feels what you all feel like when working out a Gym lol. So I don't do anything, anymore trying to prevent further pain and drama. I opened a window I had to lean up and into over the kitchen sick, and pulled muscles, nerves, or fractured something. Steroids help suppress the pain, but on non-steroid days I eat Tylenol (don't worry I only do about 2500 a day) then do Flexeril at night. My Drs, Pharmacist, Nurses etc always ask why I don't do the stronger meds, well I don't want to be mentally unsharp. At least I still have brain and analytical self. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>AND OMG, I FORGOT TO MENTION THE "BIGGEST" PART OF ALL OF THIS... I STOPPED DARZALEX AND POMALYST AND BEGAN BLENREP LAST WEEK.</b> The infusions are every 3 weeks, (so it must be pretty powerful stuff), continue on Velcade, and 40mg Dex Steroids weekly, which I will never stop, as it helps me in so many ways with pain, and preventing chemo, immunotherapy, side effects. I will never understand why Drs don't prescribe it with all infusions and for all cancer patients suffering with all the awful side effects. Anyway, thankfully I haven't had any of awful and feared side effects. Some Nausea, loss of appetite, etc, but that was there before anyway... But if you "know me", you know I am very OCD about being cautious and careful on chemo days, and for a few days afterwards, so I don't get sick. I did try to eat Wood Ranch with the kids last night (a week after Blenrep), something I haven't allowed myself to do for weeks. I had Broccoli, a very small steak, a little Mac n Cheese, a roll. Have been ok, and ate today too. THANK YOU STEROIDS. I did have several "cleanses", but nothing new with that LOL. And I've been doing the required Eye Drops 2x per day, and so far, so good. We'll see. All I want is the Extramedullary Masses to shrink, so I be physically comfortable again.</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-2Hj_rLtLdTY/YGaSaOl9WTI/AAAAAAAAHbo/g7NT4ipnEwUtsLG9K6oZ75L6HqQrHTh-ACLcBGAsYHQ/s2048/41blen.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-2Hj_rLtLdTY/YGaSaOl9WTI/AAAAAAAAHbo/g7NT4ipnEwUtsLG9K6oZ75L6HqQrHTh-ACLcBGAsYHQ/w240-h320/41blen.jpg" width="240" /></a></div>Lovely selfie lol</div><div style="text-align: center;">I was really tired and achy,</div><div style="text-align: center;">and also didn't fluff my hair much. </div><div style="text-align: center;">Funny how my Nurses always ask how I am,</div><div style="text-align: center;">and know by how I look. I tease them that one day</div><div style="text-align: center;">I will come in right out of best and scare the heck out of them :)))<br /><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Well it's taken me all day sporadically to write this, so I have to quit and sit and watch <a href="https://www.netflix.com/title/70171946" target="_blank">"Heartland"</a> until I fall asleep. If I can't ride my own horses, and see beautiful scenery, then I can binge watch it on TV. Never did this before, such a new lifestyle for me. If you are a "horsey" person, you'll enjoy this series a lot. It's not the typical "adult" series, not a lot of scary drama, etc, but situational people issues, beautiful scenery, lots and lots of beautiful horses and ranches. You can watch it with your kids and grandkids, that's how "G" rated it is :))))) </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Here are some links to random things and shows I've been watching lately, if i'm not asleep or in the bathroom LOL</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.cbc.ca/heartland/" target="_blank">https://www.cbc.ca/heartland/ </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.pepperjelly.com/shop" target="_blank">https://www.pepperjelly.com/shop </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.foodnetwork.com/restaurants/shows/diners-drive-ins-and-dives" target="_blank">https://www.foodnetwork.com/restaurants/shows/diners-drive-ins-and-dives </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.cookingchanneltv.com/shows/carnival-eats/carnival-sweets" target="_blank">https://www.cookingchanneltv.com/shows/carnival-eats/carnival-sweets </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.hallmarkchannel.com/?glbnav=hallmarkchannel" target="_blank">https://www.hallmarkchannel.com/?glbnav=hallmarkchannel </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Walmart grocery pick</b> up is amazing. My kids pick up for me. I used to eat baby food years ago when I just don't feel like heavy roughage foods. Just ordered a bunch and we'll see how that goes lol. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>I'm always looking up medical info</b> all the time, and prescriptions, and just anything that comes into my mind relative to my limited life lol, but hoping to do one day... hello Hawaii, coastal beach hotels, dude ranches, etc, lol </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Always on the Myeloma sites, keeping up with research and new FDA approved meds:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.myeloma.org/multiple-myeloma-drugs">https://www.myeloma.org/multiple-myeloma-drugs</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/" target="_blank">https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/ </a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://www.myelomacrowd.org/" target="_blank">https://www.myelomacrowd.org</a>/</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And all the other legit clinical, medical sites</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-b0MMepFpRlk/YGaNpN2YLRI/AAAAAAAAHbA/oDgyuWhgp0IWEJpjPSKWfnCePlw7b6T5QCLcBGAsYHQ/s1080/41es.webp" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="676" data-original-width="1080" height="250" src="https://1.bp.blogspot.com/-b0MMepFpRlk/YGaNpN2YLRI/AAAAAAAAHbA/oDgyuWhgp0IWEJpjPSKWfnCePlw7b6T5QCLcBGAsYHQ/w400-h250/41es.webp" width="400" /></a></div><br /><div style="text-align: left;">I'll probably be editing this for the next week, and commenting on your amazing comments too :))</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you everyone for caring as you do!</div></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com3tag:blogger.com,1999:blog-6542378222548786727.post-20976314132210220862021-03-25T17:59:00.005-07:002021-03-26T11:23:11.127-07:00Blenrep Happened Today- More Later!<p> 3.25.21</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-v52w8I9E3kU/YF0xbOn_N8I/AAAAAAAAHZo/9tonK0czOyEC1mMrTOSbD2qfqED58POpACLcBGAsYHQ/s600/25bl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="400" src="https://1.bp.blogspot.com/-v52w8I9E3kU/YF0xbOn_N8I/AAAAAAAAHZo/9tonK0czOyEC1mMrTOSbD2qfqED58POpACLcBGAsYHQ/w400-h400/25bl.jpg" width="400" /></a></div><br /><div style="text-align: center;">New <a href="https://www.blenrep.com/" target="_blank">BLENREP IMMUNOTHERAPY CHEMO</a></div><div style="text-align: center;">happened today. </div><div style="text-align: center;"><br /></div><div style="text-align: left;">So much has happened this week, so exhausted and beat up. Will update ASAP...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Myeloma Labs are rediculous. Have never seen or could guess how HIGH (bad) they are. Unbelievable. Off the chart awful. Drs just shake their heads, everyone trying to stay positive, knowing I have 1 almost 2 feet in the grave or cozy cremation oven</div><div style="text-align: left;"><br /></div><p style="text-align: center;"><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com5tag:blogger.com,1999:blog-6542378222548786727.post-25742624099426284982021-03-22T21:14:00.023-07:002021-03-23T16:26:22.622-07:00So Sad, So Sick, So Sabotaged by Myeloma<p> Hello Friends and Loyal Followers-</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-m_1_FDhmsxQ/YFlkjcmkShI/AAAAAAAAHZA/F18R-u95INkk_3s-Q7mtYBofY0e4J2jIQCLcBGAsYHQ/s310/2221.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="163" data-original-width="310" height="210" src="https://1.bp.blogspot.com/-m_1_FDhmsxQ/YFlkjcmkShI/AAAAAAAAHZA/F18R-u95INkk_3s-Q7mtYBofY0e4J2jIQCLcBGAsYHQ/w400-h210/2221.jpg" width="400" /></a></div><br /><p>Have so much to say, but zero energy to say it... here's the plan for this week:</p><div style="text-align: left;"><b>Dr appt Tuesday</b></div><div style="text-align: left;"> </div><div style="text-align: left;"><b>High Dose Steroids before</b> (which I take early in the morning for full affect for chemo and overall body pain relief. They are my weekly friend, but yucky-crash enemy more than ever now. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Before that, Labs for Blood Typing for Platelets and Blood</b>- Nurse called and said I needed blood typing labs and needed to get to the Lab (further away Lab for me) asap. I laughed and said, "are you kidding me. I'm not a normal person and can't just jump in the car and go there. My adult kids are at work, I can't drive and besides I can barely walk and function. Nope, now way can I do labs there today, blah blah blah... but back in the day, ha ha, not a problem to do whatever I wanted whenever I wanted. But of course, back in the day I didn't need transfusions. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Dr appt to dicuss Blenrep start day,</b> but may not be able to start this week because of the Transfusions... Good bye Darzalez, Pomalyst, Velcade, Dex Steroid combo. Velcade, Dex may be the only continuing partner with Blenrep... </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Wednesday, Blood, Platelets, </b>whatever can help build my system. Maybe continue to do weekly Velcade shot if I don't begin Blenrep immediately. We've discontinued the Darzalex and Pomalyst too. Just don't want too many things colliding, confusing multiple side effects. As always, I want to know what is causing what. What will Blenrep do to me beyond the Eye issues? How yucky will I feel. Will it be my miracle medication? OMG I HATE YOU SO MUCH MYELOMA. Why why why why me. I don't understand what I did to cause to this celluar volcano inside of me. Some days I am really "done". I don't fear Death. I just have so much more living to do... I'm just so sad. I could cry all the time (which I never "needed" to do before). So many things around here to make me emotional and cry. The little doggies look into my eyes when I cry, and the depth of their empathetic gaze is so deep. Animals are so perceptive. So sad, so incredibly sad what happened to my life at 50, and worse at 60...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Have had several weeks of side effect awfulness. Finally took one 4mg Dex Steroid earlier today, as I cannot stand myself, and what myeloma has done to me. Can't stand feeling so incredibly awful, so sick, so weak, all the time. Big Fever middle of the night last week 102, 103?, and I think a week before. Then fortunately, lower the next day 99-98. Weak beyond weak. I so fear falling. Cannot eat or drink much at all, if I do, you know where I wind up for hours lol. But there are days I barely have anything coming out of me, as I barely have anything going in. Not good, I know...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Feel so sorry for all the critters here. Yes my wonderful, loving adult kids come daily to care for me and them. They want to bring me food, but I can't eat, just can't get beyond the nausea and full feeling from the lovely Alien Abdominal Mass. Have you ever watched all the cooking and food shows? I laugh at the "Carnival Eats, BBQ, etc shows, and think what the "normal" person can eat and digest. So Jealous. But wouldn't dare...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Any of you become Extramedullary? Never heard of it before. What caused it. Was it the horrible summer of Elotuzumab for me? Some crazy reaction that actually stimulted tumor growth because I"m IGA myeloma? I was so "functional" prior to that. Sick, yucky, side effects, but Functional. Sorry I ever tried Elotuzumab. But who knew... Who know's what will result from putting all these powerful chemicals into our bodies, trusting they will kill Myeloma, but not us lol...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And this!!!!! LOL Unbelievable!!! Ever seen Beta2Microglobulin this high? My phone is overfilled with pictures and screenshot, so I won't be posting all the other Myeloma- Lab- You- Won't- Believe- This- </div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-JlXxEzElFcU/YFp4p3hBZ_I/AAAAAAAAHZg/uNJ-WRdN96YboeefluGCqvcG7UYaWFM7QCLcBGAsYHQ/s1896/19b2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1896" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-JlXxEzElFcU/YFp4p3hBZ_I/AAAAAAAAHZg/uNJ-WRdN96YboeefluGCqvcG7UYaWFM7QCLcBGAsYHQ/w228-h400/19b2.jpg" width="228" /></a></div><br /><div style="text-align: center;">SERIOUS NOW MYELOMA</div><div style="text-align: center;">UP 10 POINTS</div><div style="text-align: center;">TO DOUBLE DIGETS!!!!</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-MVjsfx5--bM/YFlqVSydZbI/AAAAAAAAHZQ/UYCLtQha1WkRrjT4OWqWSFM7FY0P9xpgwCLcBGAsYHQ/s258/2122s.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="196" data-original-width="258" height="243" src="https://1.bp.blogspot.com/-MVjsfx5--bM/YFlqVSydZbI/AAAAAAAAHZQ/UYCLtQha1WkRrjT4OWqWSFM7FY0P9xpgwCLcBGAsYHQ/w320-h243/2122s.jpg" width="320" /></a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-j01lWQ-dol4/YFlq0gO4FEI/AAAAAAAAHZY/xcZU3Eq416EMJTWqU4hbKjhmrdLN52VzgCLcBGAsYHQ/s2000/2121s.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="2000" src="https://1.bp.blogspot.com/-j01lWQ-dol4/YFlq0gO4FEI/AAAAAAAAHZY/xcZU3Eq416EMJTWqU4hbKjhmrdLN52VzgCLcBGAsYHQ/s320/2121s.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><div style="text-align: left;">Ok, bye for now. Thank you for checking in. </div><div style="text-align: left;"><br /></div></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-23471507200873903302021-03-09T21:10:00.020-07:002021-03-10T20:08:03.793-07:00Choices, Choices, Studies, Studies... Please Stop Mutating Myeloma!<p>3.11.21 (but written on 3.9.21) as I will be crashing bad on 3.11.21...</p><p style="text-align: center;">And I found this the other day... </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-sSEHTN5xKy0/YEg3nuxu1oI/AAAAAAAAHY0/yDHxl8a9dwI2f3KJy54s9PwGnsOPV-IyACLcBGAsYHQ/s500/1881.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="494" data-original-width="500" src="https://1.bp.blogspot.com/-sSEHTN5xKy0/YEg3nuxu1oI/AAAAAAAAHY0/yDHxl8a9dwI2f3KJy54s9PwGnsOPV-IyACLcBGAsYHQ/s320/1881.jpg" width="320" /></a></div><div style="text-align: center;">ME!!!!!</div><div style="text-align: center;"><br /></div><div><br /></div><div><br /></div><i><u><b>So here's the UPDATE I would be posting on 3.11.2021:</b></u></i><br /><p><b>1- Darzalex IV Monday March 8.</b> I now have a weird reax to IV Benadryl where I get "Restless Leg Syndrome" with the IV Benadryl push. So sad about that, as the Steroid up and the Benadryl mush mouth, tired and relaxed without choice, previous reax, was so "fun"!! Was such an out of body reax with my brain on, but outside my body, and my slow-mo talking. You would all laugh hysterically seeing me like that! Now it's annoying with feeling tired and relaxed mentally, but my body wants to be in motion lol. Maybe if my CBC's rise, I can enjoy the previous bipolar ridiculousness! </p><p><b>2- Dr appt/planning/discussion and Velcade Injection today, Tuesday March 9.</b></p><p><b>3- Both days, with 20mg Dex Steroids and Pomalyst.</b></p><p><b>4- Discussed both <a href="https://www.blenrep.com/" target="_blank">Blenrep</a> and <a href="https://myelomaresearchnews.com/2020/06/17/phase-3-trial-melflufen-combo-in-relapsed-refractory-multiple-myeloma-fully-enrolled/" target="_blank">Melflufen</a> or stay the course</b> <b>with Darzalex, Velcade, Pomalyst, Dex steroids.</b> I do feel my awful Abdominal Alien Mass may have shrunk a tiny bit. Is that from Radiation or Chemo, or the fact that I've lost 10 pounds from not being able to eat because it's so big and taking up so much room. I hardly have an appetite, and when I do try eating, I can only do a few bites before I am full or it begins to taste yucky. All the food I have here, and see on TV still looks totally delish, but Alien says NO! ... Dang thing, I wish it could be just suctioned out. Today I had my Nurse stab it with the Velcade shot. LOL not really, but I did do the Velcade injection on my Right side LOL. Wish it would just disintegrate and I could pee or poop it out LOL. You ask why I can't have Surgery on it... first of all Drs have said it's too "dangerous" because of where it's located (Abdominal near Kidney, Liver, Adrenal), and the Mass would just grow back, as the Myeloma is everywhere and just keeps recreating itself. Same with the Lung Mass, Skull mass, etc, not to mention all the bone fractures, breaks, lesions, plasmacytomas, etc. Myeloma just loves me and wants to make it's presence known everywhere, 24 7. Ugh, where did it come from, I will always wonder... Whyyyyy meeeee???? </p><p>Well time to try some tea, drink a bit of it, hate the taste, throw it away and try another. Not to mention see if what I ate earlier, agrees with Alien... doggies sure get a lot of left-over treats now lol.</p><p>Thanks for reading and caring as you do, and offering medication suggestions and heartfelt comments as you do. Means so much to me :)) x0x0</p><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com10tag:blogger.com,1999:blog-6542378222548786727.post-27366194355695773582021-03-01T20:54:00.021-07:002021-03-08T21:45:26.648-07:002 New Options: Blenrep and Melflufen<p> 3.1.21</p><p>Hello Friends, </p><p>All's the same... extreme fatigue and exhaustion thank you to very very very low CBCs, Platelets, Hemo, Reds, Whites, etc. I am so sick of feeling sick all the time. So tired of being tired all the time. Over the years, I had the flu and colds just like everyone else, but recovered like everyone else, and life went on. With Myeloma side effects, I can barely move and do anything now. Everything is challenge. Not a ton of pain, but it's there. But the weakness, fear of falling, I can barely get in and out of bed, the car, chairs, etc, and the inability to do much of anything is startling for me. It's just all totally disabling and I can't wrap my head around it. Never watched so much TV in my whole like. Never had to "force" myself to eat and drink. I am sick of hydrating. Sick of trying to eat the "right" things. I could live on the pre-boxed protein drinks, if that was healthy. But it's not. A while ago I weighed 131 when doing the High Dose Dex Steroids. Now I'm 121. That's fine with me, but I also know "what it means"...</p><p>So the regimen of Darzalex, Pomalyst, Velcade, Dex Steroids is a big joke to Myeloma. I'm "refractory" to all of them most likely. Oh well. I'm tired of blood tests, and needles sticking me. Never bothered me before, but now my skin is so sensitive, I tense and bristle up when the needle goes in. Never had this issue before. And the nose bleeds. Weird clots come out when I blow my nose. Oh well.... And the Extramedullary Lung and Abdominal Masses... who knows how big they are now. I care, don't care anymore. I get mad at myself when I mumble and bumble around the house and say I don't care anymore, I'm done, I can't take this anymore, and just want to feel what it's like with NO meds in me. But truth is, I do care. I care a lot. I want to live. But it's just so hard now. All I do is whatever I have to do to treat Myeloma and then deal with the side effects. Nothing tastes good. I try to eat, but it's not fun, nor tastes good any more. I try to drink, but I throw more tea and juices away, then I drink. And I used to love my herb teas and Cranberry sparking water mix. Can't stand plain water any more. Force myself... I haven't had coffee in weeks. Doesn't tase good at all anymore. I watch the Food channels and laugh at all the incredible concoctions. Onions, Garlic, Fried, Jalapenos, Carnival Burgers to Elegant dishes. I'll never be able to eat any of that any more... LOL, not that I ate it before, but for sure now, I will never be able to. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Teb2r5Bn-Yw/YD2y2MC4vaI/AAAAAAAAHYQ/1uptlhCzzg8R__lyPUyQMFI3n5hoQ0EpQCLcBGAsYHQ/s400/321c.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="400" data-original-width="400" height="320" src="https://1.bp.blogspot.com/-Teb2r5Bn-Yw/YD2y2MC4vaI/AAAAAAAAHYQ/1uptlhCzzg8R__lyPUyQMFI3n5hoQ0EpQCLcBGAsYHQ/s320/321c.jpg" /></a></div><div style="text-align: center;">Fun Show!</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-T6KBwy-2JUc/YD2y-FDJVwI/AAAAAAAAHYU/lKXghK6QOMMTs_a2NaEylM31m7Gz5gfrwCLcBGAsYHQ/s1008/321rc.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1008" data-original-width="756" height="320" src="https://1.bp.blogspot.com/-T6KBwy-2JUc/YD2y-FDJVwI/AAAAAAAAHYU/lKXghK6QOMMTs_a2NaEylM31m7Gz5gfrwCLcBGAsYHQ/s320/321rc.jpg" /></a></div><br /><div style="text-align: center;">Will never celebrate with Jim and others again</div><div style="text-align: center;">He loved a good steak, I was never a regular meat eater</div><div style="text-align: center;">But we had a lot fun times at lovely restaurants... </div><div style="text-align: center;"><br /></div><div style="text-align: left;">So Steroids and Darzalex today. The Benadryl is still affecting me with woozy brain mush, which is ok, cuz feeling mellow is ok with me. But I've developed "Restless Leg Syndrome" from the IV Benadryl. Weird. But my amazing Nurses reassure me that it is a known side effect. Hope to get back to the woozy effects, rather than stomping around trying to get rid of the "leg fizzies". Super tired and weak, but I am always careful, but I do worry about the Little Doggies getting under my feet and tripping me... I am very careful, don't worry about that! Use a cane most all the time now. They're Jim's canes. So funny. I had bought him several with very nice decorative patterns on them, NOT knowing I would eventually be the one using them LOL.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Tomorrow, Velcade and possible Platelet transfusion. Dr wants me to go for blood tests after injection. Don't feel like driving to another facility. Don't feel like doing anything. Would love to stop everything and see what happens, then if not good LOL, go back on some do me good chemo... would love to just sleep and sleep and sleep, then wake up refreshed, go outside and realize it's all been a crazy dream,,, ha ha...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Did my Ophthmology appt last week, and my eyes are good, and ready to be destroyed by Blenrep. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Ironically a blog follower mentioned <a href="https://www.onclive.com/view/fda-approves-melphalan-flufenamide-for-relapsed-refractory-myeloma" target="_blank">"</a><span face="Lato, sans-serif" style="background-color: white; color: #121212; font-size: 17.6px;"><a href="https://www.onclive.com/view/fda-approves-melphalan-flufenamide-for-relapsed-refractory-myeloma" target="_blank">melphalan flufenamide (Pepaxto; melflufen)"</a> . </span> I had read about it previously too. It was just approved yesterday, Feb 28,2021! The most amazing thing I read, and couldn't believe my eyes, was good results with EXTRAMEDULLARY Myeloma:</div><div style="text-align: left;"><br /></div><div style="text-align: left;"> <b>"<span face="Lato, sans-serif" style="background-color: white; color: #121212; font-size: 17.6px;">Notably, the combination also showed activity in a subset of patients who had extramedullary disease (EMD; 41%). "</span></b></div><div style="text-align: left;">Thank goodness for the BRAVE people that do these Trials!!!</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://news.cision.com/oncopeptides-ab/r/fda-approves-oncopeptides--pepaxto----melphalan-flufenamide--for-patients-with-relapsed-or-refractor,c3296082" target="_blank"><span style="font-size: medium;">Last paragraph of another article:</span></a></div><div style="text-align: left;"><span style="font-size: medium;"><a href="https://news.cision.com/oncopeptides-ab/r/fda-approves-oncopeptides--pepaxto----melphalan-flufenamide--for-patients-with-relapsed-or-refractor,c3296082" target="_blank"><span face=""Open Sans", Arial, sans-serif" style="background-color: white; color: #333333;">Furthermore, melflufen in combination with dexamethasone demonstrated activity in a</span><span face=""Open Sans", Arial, sans-serif" style="background-color: white; color: #333333;"> <b>subset of patients with Extra Medullary Disease (41%), an aggressive and resistant disease associated with a poor prognosis</b></span><span face=""Open Sans", Arial, sans-serif" style="background-color: white; color: #333333;"><b>.</b></span></a> </span></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Well isn't this an amazing twist... will ask my Dr about Blenrep vs Melflufen!!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And in my recent Labs, Steroids have brought my A1C to a little over 6. But that could also be that I am not eating well, and eat more bread type things now to settle my stomach. I'm too <a href="https://www.mdanderson.org/cancerwise/cancer-treatment-side-effect--neutropenia.h00-159143667.html" target="_blank">Neutropenic</a> for fresh fruits and veggies. But honestly, I eat whatever I want. Does it REALLY matter at this point... care, don't care... but I really do care... I think I'll try some Hot Chocolate now... sugar, sugar... who cares... </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-JwQ8S3S9oSY/YD3MOLB9jtI/AAAAAAAAHYg/Yhafvmm7gCcsS3G6Cn-5FjdtOpygWJu7wCLcBGAsYHQ/s1500/1321.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1500" height="266" src="https://1.bp.blogspot.com/-JwQ8S3S9oSY/YD3MOLB9jtI/AAAAAAAAHYg/Yhafvmm7gCcsS3G6Cn-5FjdtOpygWJu7wCLcBGAsYHQ/w400-h266/1321.jpg" width="400" /></a></div><div style="text-align: center;">LOL hadn't read this before just finding it to post!</div><div style="text-align: center;">I eat almost all the banished foods here LOL</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thanks for reading, caring and following my story. Sorry for being so sad and pesimistic now, compared to the upbeat, joking, positive, it will all be ok Julie, through out most of this blog since 2010...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com5tag:blogger.com,1999:blog-6542378222548786727.post-68536844826108812142021-02-21T14:25:00.055-07:002021-02-24T11:52:18.558-07:00Time for Real Acceptance <p> 2.21.21</p><p>Hello Friends and Followers- </p><div style="text-align: left;">Word of the day, week, month for me: <b><i>Acceptance</i></b>.</div><div style="text-align: left;"> </div><div style="text-align: left;">Acceptance can be a simple word and concept, or very powerful. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><i>Acceptance</i></b>...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I've spewed this word out all my life. I've talked about Acceptance of ourselves, our families, our situations, our circumstances, our history, our plans, our interruptions, other's Acceptance of us, and us of them. But have I ever really, really Accepted Myeloma?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">No.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thought I did, but I really didn't on a deep to the core,... This Is Actually Happening To Me, level.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Sadly, it took this awful <a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">Extramedullary ABDOMINAL Mass</a> (and also knowing about the other masses, and painful fractures) to wake me up and make me fully realize I'm really, really "sick". Yes, I have incurable cancer. I've "beat the odds" for over 11 years. Everything happening and growing INSIDE my body is out of My control, no matter what we do to treat it. <b><i>Myeloma is Incurable</i></b>, and just bounces back. Just a matter of time for each individual. (<b><i>There is NO cure</i></b>, and eventually one runs the course of all available FDA approved treatments, and then many go on to clinical trials.) I often say to people that because Myeloma is an "invisible killer", unlike other cancers that are External and can be "seen", Myeloma is more difficult to Accept and understand, because it cannot be seen. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">For so many years, I was able to take pill-form and IV-form chemo, along with high dose Steroids, and fake function a few days a week. I'd always "fix" myself up externally, just because that's me and it makes me feel better to look Ok. But now after over 11years, this vicious cancer has completely taken over my body, moved outside the bone marrow, where Myeloma begins and lives, and has forced me to ACCEPT my circumstances. Yes, forced. I don't have the option of "pretending" I'm ok, just because I look ok and Steroids fake me out several days a week. Truth is now, I don't look well, and this softball+ size tumor has changed my physical appearance so much, I can't stand to look at myself. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Myeloma and my compromised immune system, has also sucked the life out of me for so many years. Most never understood it. Most around me got tired hearing of my status, treatments, labs, appts, results, side effects, etc, and why I wasn't able to go places, do things, the way I used to. I call it "Cancer Fatigue". Sometimes I just didn't talk about my circumstances unless people asked, or they said something dumb, like "Julie, you look so good, when did you stop chemo? When were you cured?" </div><div style="text-align: left;"><br /></div><div style="text-align: left;">So how long has Myeloma been mutating inside me and growing these awful Extramedullary tumors? I'll have to go back to all my CT, MRI, PET Scans, etc, and see when they were first seen. They haven't always been there, and weren't visible on scans when growing years ago. When I first read the reports, not much sunk in, as the medical terminology is overwhelming. I just wish the scans would show in color and be more clear to non medical people. How the Radiology teams can read these as they do, is truly amazing. I do recall, as I have mentioned this many times, everything was so complicated by my husband Jim's Alz situation and decline. I paid more attention to him then me. I remember my Dr mentioning in Jan 2020, how big the masses were, and me studpidly telling her we'd wait on dealing with my situation because of Jim's status... yes, stupid Julie. I recall her understanding, but letting me know, not the best decision... Yes, stupid Julie... I just hadn't Accepted the seriousness of my situation, and at this time, these masses weren't causing me discomfort, and I had a few "good days" weekly. But if this awful Extramedullary Mass was growing on the outside of my body and could be seen, or I could actually feel it, I know my response would havve been drastically different.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">See I was very fortunate in the beginning of my Myeloma journey, that I didn't have a lot of the classic bone pain, random pain, broken bones, tumors that could be seen, etc, like most diagnosed with Myeloma have. I had many fractures and pain often, but nothing that stopped my life or hospitalized me. I just thought I had pulled muscles and nerves due to steroids and chemo weakening my body, or that the fractures were pinching something. Back in the day, Chemo and Steroids allowed me these few good days per week after my SCT too. All the while these evil cells were growing and mutating INVISIBLY inside of me. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">So what's my point here, other than ranting (and I thank those that care to read my rants), my point is that I really have ACCEPTED my plight, I think about death and dying daily. I am angry and frustrated my life was cut so short so soon, (My dad is 94, doing great, and 100% independent. My mother passed at 88 from evil Alzheimers Feb 2010.) I am angry and frustrated that I am so limited and exhausted 24 7, meanwhile my body has all the energy in the world to grow Myeloma cells and take me down. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I am angry and frustrated that most all that I planned and hoped for in my "golden years" has been stolen from me. And it's right in front of my face 24 7. I am sad I see all this wonderful food I used to love to prepare, share and eat, that I cannot now, because this Abdominal "Alien" is taking up so much space, I have little room to injest anything. And if I do, I feel incredibly bloated, short of breath, and have sharp abdominal pains, when my "Alien" gets angry it's being pushed around. I am angry and frustrated I have beautiful tangerines and lemons on our fruit trees, and cannot enjoy them. I am angry and frustrated that I have zero energy in general, but especially to walk outside in the sun, do little chores as Jim and I used to, pet and groom my horses, pet and play with the doggies and I am so very angry and frustrated that I cannot go anywhere or do anything, as I am so weak, fatigued, exhausted, and extremely Immune Compromised (WBC is .9 (point nine!), and feel like the "Pillsbury Dough Boy-Girl". </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-6w-wKWDejxQ/YDLHFLHJnfI/AAAAAAAAHXw/HdVzpopzsqoeRUaKo04pM_TN0cSZkSMDACLcBGAsYHQ/s385/21p.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="385" data-original-width="385" height="320" src="https://1.bp.blogspot.com/-6w-wKWDejxQ/YDLHFLHJnfI/AAAAAAAAHXw/HdVzpopzsqoeRUaKo04pM_TN0cSZkSMDACLcBGAsYHQ/w320-h320/21p.jpg" width="320" /></a></div><br /><div style="text-align: left;"><br /></div><div style="text-align: left;">I am so sad, angry and frustrated that I cannot join friends and family on adventures as I used to or planned to do. I see and hear what "Normal" people are doing and I cry. Go with them you say. I can't, I say. You say, never say can't. I say no, literally I can't. I have to be near a (clean) bathroom all the time, I feel gross and sick and bloated and extremely exhausted, and even if someone .... and I can't believe I am saying this... even with someone pushing me in wheelchair, it would Not be enjoyable. I hurt, I'm exhaused, I'm nauseated, I'm beat up, I'm horribly bloated, it hurts to do most anything unless I am on steroids, and I am too immune compromised to be in public places... so for all these reasons, and for how sad it would make me feel, I honestly cannot do much of anything except go to medical appts. I would be forcing everything, and what's the point of that. I am sick with a horribly desctructive cancer and I Accept it... I cannot change it. It is what it is. I accept. I live moment by moment looking at all Jim and I created, all the critters, beautiful landscaping, things in our house, and I am just so sad it's being stolen from me too early.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">So where does all this bring me. I have accepted my clock is ticking much faster than I anticipated. I don't have the life choices I anticipated. I will "go" with missing out on so much, and that makes me angry and sad, but I am Accepting it more and more each day, because I cannot change it. I rant and cry around the house, then tell myself to just Shut Up, it doesn't matter any matter anymore. Just shut up Julie. You've Accepted your plight, so just shut up. </div><div style="text-align: left;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">Beta2</div><div style="text-align: center;">I'm 9x higher than the Normal range of 1.0 - 1.8</div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-A3Q-BtdcQvs/YDLLV5W4UuI/AAAAAAAAHX4/fnVy_QBW714cREDGKav2zZBi-11CdhZ1gCLcBGAsYHQ/s1734/21b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1734" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-A3Q-BtdcQvs/YDLLV5W4UuI/AAAAAAAAHX4/fnVy_QBW714cREDGKav2zZBi-11CdhZ1gCLcBGAsYHQ/w249-h400/21b.jpg" width="249" /></a></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: center;">LOL...</div><div style="text-align: center;">IGA too High to even measure</div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-xJdJQBeaNUM/YDLLcGOXuxI/AAAAAAAAHX8/Sa-tifuaQnc8bwwj2-Rlji7g_KO1vKqJACLcBGAsYHQ/s1822/21i.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1822" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-xJdJQBeaNUM/YDLLcGOXuxI/AAAAAAAAHX8/Sa-tifuaQnc8bwwj2-Rlji7g_KO1vKqJACLcBGAsYHQ/w238-h400/21i.jpg" width="238" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: center;">> = beyond what the testing machine can register </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-x46LRtNbBlw/YDLNErt1KMI/AAAAAAAAHYI/zpkiGXjzatM7cgWU2Nmwgf8Gqx_h_wJZwCLcBGAsYHQ/s1200/21a.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="400" src="https://1.bp.blogspot.com/-x46LRtNbBlw/YDLNErt1KMI/AAAAAAAAHYI/zpkiGXjzatM7cgWU2Nmwgf8Gqx_h_wJZwCLcBGAsYHQ/w400-h400/21a.jpg" width="400" /></a></div><br /><div style="text-align: center;"><br /></div><div style="text-align: left;">PS- yes I will speak to my Dr about <a href="https://www.blenrep.com/" target="_blank">Blenrep</a> at my Tues appt. Pick your poison. Black box Rx warning about serious Eye issues... but according to many, great Myeloma results. Then there's Clinical Trials that everyone is pushing me to do. Little control of what they put in you, and what they are doing with you... I like being part of a Team, not being told what to do with little information or options... maybe I am wrong about clinical trials. Will have to ask my Dr more and call COH... an then there's the drive down there... time buy a lil airplane or helicopter lol</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And now I will drag myself to Kaiser for weekly Labs, and hopefully be able to sit outside in the sun when I return.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for reading and caring as you do :))</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/xo1VInw-SKc" width="320" youtube-src-id="xo1VInw-SKc"></iframe></div><br /><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-70345334235282118152021-02-13T22:00:00.037-07:002021-02-16T10:49:39.680-07:00Someone Get Me Out of this Nightmare... Daymare... Make That ... Cancermare... <p> 2.13.21 Seems like a great date to write a post lol. 13th. Yep that's my life... Only thing I like about my Title is the word "Mare" in it, as horse mare :))</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ibnTyRpKUys/YCidB8b4KpI/AAAAAAAAHWc/lnm9l1TCEro5YgeK5JBnhzvd4-BTsixzQCLcBGAsYHQ/s691/21.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="488" data-original-width="691" src="https://1.bp.blogspot.com/-ibnTyRpKUys/YCidB8b4KpI/AAAAAAAAHWc/lnm9l1TCEro5YgeK5JBnhzvd4-BTsixzQCLcBGAsYHQ/s320/21.jpg" width="320" /></a></div><br /><p>Anyway, hello from the "living dead", with one, maybe two feet in the grave or in the "ash dust"... not sure some days. Honestly friends, I truly did not have any idea what Myeloma could do. I knew it was a serious cancer WITHOUT A CURE, but I seriously did not know the viciousness, pain, weakness, mutating aspect of Myeloma. No offence to those with Myeloma, but there are so many versions of it, I really did not understand what my first Dr meant, when she told me I was "High Risk", back in Dec 2009, as I didn't have any of <a href="https://www.myelomacrowd.org/myeloma-101-myeloma-translocations/" target="_blank">"typical "chromosonal mutations"</a> that I had heard of with people primarily with IGG and Light Chain types, non-secretory, etc. I felt I'd just keep drinking chemo for the rest of my life with little drama. and I wouldn't have all the "problems" other Myeloma patients had... hahahahahahaaaaaaaaaaaa on me....</p><p><a href="https://www.myeloma.org/types-of-myeloma">https://www.myeloma.org/types-of-myeloma</a></p><p><a href="https://www.cityofhope.org/clinical-program/myeloma/myeloma-facts?gclid=CjwKCAiAjp6BBhAIEiwAkO9WurwIPuCqABqD9yElAvgpjMeSzJplJX7s6lBNlTTn-Zh77qH4rSvJ7xoC-wcQAvD_BwE&gclsrc=aw.ds" target="_blank">https://www.cityofhope.org</a></p><p><a href="https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/" target="_blank">https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/</a></p><p>Now I understand the term "Multiple Myeloma", as it morphs and mutates in Multiple ways with me, harms Multiple areas, (well most all), has Multiple types, causes Multiple types of Bone and Body damage, and causes Multiple lesions, tumors, multiple areas of bone destruction, etc etc., and of course in my case, changes in Multiple ways to one of the worst possible versions... <a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">Extramedulary</a>. Hate you Myeloma, and I apologize for not reconizing your Strength, Intellegence, Ability to Mutate even while being slammed with powerful chemicals. How you now laugh at my treatments, that previously mocked you and supressed you. how much I ignored and denied... Ok, you win Myeloma, but I'm still going to fight until the pain overcomes me, or you take my most important abilities aways (which to a degree, you alread have),,,</p><div style="text-align: left;"><i>PLEASE READ THIS LITTLE "DISCLAIMER": </i></div><div style="text-align: left;"><i>If you are NOT COMFORTABLE thinking or talking about "death", please stop here,.....</i></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Ok, so at my most recent Dr appt on Tues, prior to chemo, I asked my Dr directly these questions, as I had previously asked my SCT Dr at COH many years ago with Jim there with me:</div><div style="text-align: left;"> </div><div style="text-align: left;">1- "If I was to stop ALL treatments, how much time would I have?" She shook her head, as I know I affected her with this question, and let her know I am NOT holding her to anything she says, but I just want her "guesstimates"... she said.... maybe 3, 4 months... That's stopping ALL treatments.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">2- I then asked her how much time I might have if I stopped all treatments except Dex steroids, and she said somewhere between 3-6 months. </div><div style="text-align: left;">Now please don't get all upset everyone and don't try to make me feel better that Drs can't "predict" anything, I've always been a realist and pragmatist, and knew from Dec 30, 2009 I was living on "borrowed time", <i>but I just didn't have the physical symptoms to make it REAL as I do now. </i>And what do I expect, surviving 11 years, that's a lot of wear and tear on the body in normal life, not to mention treating a vicious cancer with powerful chemicals... Yes, Pain and Physical symptoms have been my "reality checks", and they didn't rear their ugliness until maybe half way thru my battle. This may be very different for others, but pain, disabilities, and physical restrictions have been my "wake up" and reality calls.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">=============================</div><div style="text-align: left;">Ok, "safe" to read now... </div><div style="text-align: left;"><br />1- We then chatted about my medication options, and I opted (as pisses everyone off), to remain as we are, <i>one more month on Darzalex, Velcade, Pomalyst, Dex Steroids</i>, and see what happens, as my IGA did go down about 500 points. My Dr feels we are "wasting time", and wants to get started immediately on Blenrep or COH clinical trials such as the BITE trial... which I do agree with her, but... Do I opt to take the chance of serious eye problems with <a href="https://www.blenrephcp.com/?cc=ps_FZZ7USSU3Z893968&mcm=290000&gclid=CKPX4LLO6O4CFRGHxQIdKZcLkA" target="_blank">Blenrep</a>, or go on a trial that could be any Random dang thing, or dose, etc... My apologies to all my Myeloma friends out there everywhere brave enough to do this already, and I've have know many and plenty that do and have, and I thank all those participating in Trials that pave the FDA "safe path" for those like me... </div><div style="text-align: left;">Ok I will in March, if this current regimen doesn't work...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><a href="https://myelomaresearchnews.com/2017/10/20/characteristics-myeloma-disease-may-impact-exposure-darzalex-study-reports/" target="_blank">Darzalex IGA vs IGG</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;">2- My WBCs, Platelets, Reds, Whites, etc are super super low, so she scheduled me for a <i>blood transfusion</i> for Friday, which I did. 2 bags. No problems with Transfusions, as I whinned about before. See, I am just not "BRAVE" like many of you think I am, but I deeply thank you for the vote of confidence :))</div><div style="text-align: left;"><br /></div><div style="text-align: left;">3- My Dr also gave me a RX for <i>Zarxio Neupogen</i> again, so I've been "shooting up" daily with that. So far, with the blood transfusions and WBC building Zarxio, I feel a bit better, but have all consuming Fatigue, and I have been using a cane here and there the last few months. Yesterday, Friday was the first time they wheeled me out of the chemo lab in a wheelchair to my car (I should proabably stop driving soon...). </div><div style="text-align: left;">Some things I am able to just "stuff" right back down, but I cried when the Nurses said Hello on Tuesday and Friday, and I cry when I'm driving, and I cry when I get up, and I cry when I go to bed, and cry through out the day... Most of my "triggers" are visual, so I pull it all together as I always have and always do, because what's the point. No one's here (at that time, or it's not the "right time" to share my pain), and I don't want to drag everyone down with me. Jim is here and I talk to him all the time, We feel him in so many ways, and the kids have experienced crazy signs too, as I did with almost "dying" in an accident driving home from chemo a few weeks, month ago... but that's another story... I, we had a great life, and I count my blessings daily, but I feel so cheated in so many ways... </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-j5xg9PLCrOA/YCilHTOJ7BI/AAAAAAAAHWk/AJ_tlpbHL9QEZgrDILd4I1lqqrJib_jGgCLcBGAsYHQ/s2048/21b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-j5xg9PLCrOA/YCilHTOJ7BI/AAAAAAAAHWk/AJ_tlpbHL9QEZgrDILd4I1lqqrJib_jGgCLcBGAsYHQ/s320/21b.jpg" /></a></div><br /><div style="text-align: center;">Here's my bag 1 or 2 of blood</div><div style="text-align: center;">Thank you Amazing Donors!!</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-iTWN5xebuxM/YCilmKlPM5I/AAAAAAAAHWs/y4ddrO-Aju8cVwcx-yI6gZ2Q9jYDA-UeACLcBGAsYHQ/s2048/21t.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-iTWN5xebuxM/YCilmKlPM5I/AAAAAAAAHWs/y4ddrO-Aju8cVwcx-yI6gZ2Q9jYDA-UeACLcBGAsYHQ/s320/21t.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-WnDjd4jK1eQ/YCimf_mPLJI/AAAAAAAAHW8/zL6AH2MtSrMycuWxXo0ZDHw0OdM-z0FDACLcBGAsYHQ/s1762/21L.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1762" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-WnDjd4jK1eQ/YCimf_mPLJI/AAAAAAAAHW8/zL6AH2MtSrMycuWxXo0ZDHw0OdM-z0FDACLcBGAsYHQ/w245-h400/21L.jpg" width="245" /></a></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7LT33AYvT9A/YCimo6DGyXI/AAAAAAAAHXA/c2vL0JhCjA4X-cE5c3aBLSESqewQFvArgCLcBGAsYHQ/s1654/21b2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1654" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-7LT33AYvT9A/YCimo6DGyXI/AAAAAAAAHXA/c2vL0JhCjA4X-cE5c3aBLSESqewQFvArgCLcBGAsYHQ/w261-h400/21b2.jpg" width="261" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-yo_5ngmu1NQ/YCimv_r-95I/AAAAAAAAHXI/J8SwuLcfGoA19f7tQIb9yTa6vPFbuHpkgCLcBGAsYHQ/s1816/21mp.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1816" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-yo_5ngmu1NQ/YCimv_r-95I/AAAAAAAAHXI/J8SwuLcfGoA19f7tQIb9yTa6vPFbuHpkgCLcBGAsYHQ/w238-h400/21mp.jpg" width="238" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-hVuyHMBCTpc/YCim3NGR1jI/AAAAAAAAHXM/oNQlSZmTO4AsFnk7A40EDCoia6j_um1dwCLcBGAsYHQ/s1680/21pl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1680" data-original-width="1078" height="400" src="https://1.bp.blogspot.com/-hVuyHMBCTpc/YCim3NGR1jI/AAAAAAAAHXM/oNQlSZmTO4AsFnk7A40EDCoia6j_um1dwCLcBGAsYHQ/w256-h400/21pl.jpg" width="256" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jIk_IcmGVX0/YCim7t0UsMI/AAAAAAAAHXU/BSMHvwg3_kkuUPjyjF_OP7f1Ya-cZCYawCLcBGAsYHQ/s2004/21wc.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2004" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-jIk_IcmGVX0/YCim7t0UsMI/AAAAAAAAHXU/BSMHvwg3_kkuUPjyjF_OP7f1Ya-cZCYawCLcBGAsYHQ/w215-h400/21wc.jpg" width="215" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-xJ-wfTqwF-8/YCinG22y87I/AAAAAAAAHXc/-v4KD_zwv3oy3mQBvKdaLVyP5Rq0iQiJgCLcBGAsYHQ/s1460/21ia.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1460" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-xJ-wfTqwF-8/YCinG22y87I/AAAAAAAAHXc/-v4KD_zwv3oy3mQBvKdaLVyP5Rq0iQiJgCLcBGAsYHQ/w296-h400/21ia.jpg" width="296" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-uGyxfEv2UU8/YCinVqkYi3I/AAAAAAAAHXk/XPwHydnvLrsiDq8-onmWKmPcqOAL1gkgwCLcBGAsYHQ/s1830/21anc.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1830" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-uGyxfEv2UU8/YCinVqkYi3I/AAAAAAAAHXk/XPwHydnvLrsiDq8-onmWKmPcqOAL1gkgwCLcBGAsYHQ/w236-h400/21anc.jpg" width="236" /></a></div><br /><div style="text-align: center;"><br /></div><div style="text-align: left;">And that's my "partial" story... so much to say, so much to tell, but I think I'll leave it here, as hopefully most of you will stumble on this after Valentine's Day, as I certainly don't want to affect your happy hearts day...</div><div style="text-align: left;">Hoping you're having a wonderful weekend with those you love and cherish. Time and illness stands still for no one. No matter who you are, what you have, what you've planned, what you think you'll be doing years from now... no guarantees in life. Jim and I were the ultimate planners, and look what happened to us... we can Try to be in Control, but Ha! We're not. I used to tell my students all the time, "You Can't Control the Things You Can't Control"... so know it, understand it, analyze it, and move forward, as you really have no other choice, right... </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for reading and caring as you do... time to go shoot up Zarxio:)) </div><div style="text-align: left;">And yes, I still have my awful "Abdominal Alien Mass", but I believe Radiation shrunk it a bit, or actually my (now) rare ability to eat and drink may be afftecting my "myeloma alien pregnancy"...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">Jim loved this Movie and Song</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/fGU7NMxboNE" width="320" youtube-src-id="fGU7NMxboNE"></iframe></div><br /><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/NIuABvRetM8" width="320" youtube-src-id="NIuABvRetM8"></iframe></div><div><br /></div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/8xvhutWc67k" width="320" youtube-src-id="8xvhutWc67k"></iframe></div><br /><div><br /></div><br /><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/-01jhW_Yzhs" width="320" youtube-src-id="-01jhW_Yzhs"></iframe></div><br /><div style="text-align: left;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br />Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com15tag:blogger.com,1999:blog-6542378222548786727.post-27888742390165833712021-02-10T00:06:00.000-07:002021-02-10T00:06:03.811-07:00News Coming 2.11.21<p>Hi Friends-</p><p>Dr appt today, and crazy test results... more to come on 2.11.21</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/_9TShlMkQnc" width="320" youtube-src-id="_9TShlMkQnc"></iframe></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: center;">Tim Magraw</blockquote><p style="text-align: center;">"Live Like You Were Dying:...</p><p style="text-align: center;"><br /></p><p style="text-align: center;"><br /></p><p style="text-align: center;">Another take on I Will survive </p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/ybXrrTX3LuI" width="320" youtube-src-id="ybXrrTX3LuI"></iframe></div><br /><p style="text-align: center;">Gloria Gaynor and the Alien</p><p style="text-align: center;">Just like me and the Alien growing in my tummy :((</p><p style="text-align: center;"> </p><p> </p><p style="text-align: center;"><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com0tag:blogger.com,1999:blog-6542378222548786727.post-66216346497746734582021-02-01T16:28:00.026-07:002021-02-02T23:04:53.111-07:00Just Eat Me Up Alive Myeloma<p>2.1.21</p><p>Hello February! I made it another month. 2.1.21 pretty cool date right. </p><p>So here I sit at downtown Kaiser waiting for Radiation #4. It's around 10:40am and my appt was for 8am. Lol 8am, who are they kidding. Guess where I was at 8am! I told the staff that on Friday, that basically No Way could I make it here at 8am because of all my GI crash side effects and I sure was right about that... Fortunately, my crash days are "predictable" so I know when to Not Take Chances lol! Last week I even put a little trash can in my car "just in case"... LOL</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Do2goV_BeFE/YBjhpdF3R7I/AAAAAAAAHVA/Hle1qoHE0swg77Dx1x57lXVGOuS67NgmACLcBGAsYHQ/s1200/419%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Do2goV_BeFE/YBjhpdF3R7I/AAAAAAAAHVA/Hle1qoHE0swg77Dx1x57lXVGOuS67NgmACLcBGAsYHQ/s320/419%2B-%2BCopy.jpg" /></a></div><p>Have had a lot of acid reflux lately, no matter what I eat, which isn't much now, thank you Abdominal Alien Mass! Probably from the Mass pushing up on all the vital organs? There are so many "spicey" type foods that mentally appeal to me, but I don't do those anymore. One day I will again, right. My lovely Crash is the "Cleanse" everyone pays for lol! Honestly, I am just grateful it's Lower GI, not Upper GI, as that I just couldn't handle that... Thankfully, my body is still functioning in many "normal" ways thank goodness, despite Myeloma eating me up alive. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-8uFX0SMcOEQ/YBiJBFiqddI/AAAAAAAAHUg/I4zosaIHJ3kOlubeRNt_MV9ul_HAFTeQgCLcBGAsYHQ/s135/2121.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="135" data-original-width="135" height="200" src="https://1.bp.blogspot.com/-8uFX0SMcOEQ/YBiJBFiqddI/AAAAAAAAHUg/I4zosaIHJ3kOlubeRNt_MV9ul_HAFTeQgCLcBGAsYHQ/w200-h200/2121.png" width="200" /></a></div><div><a href="https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/">https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/</a></div><p>I'm just soooooo beat up, unless I'm on steroids. I took 20mg today at 5:45am and then spent the rest of the morning you know where... Finally took 2 Imodium pills as back up insurance for freeway driving. How do people eat, drink and commute? I hardly ate yesterday, knowing what I had to do to get here early lol... Same will be for tomorrow, Radiation #5. I do feel the Alien has gone down a tiny bit,, but that could be related to hardly eating. So many things sound and look good,, especially since I watch more TV now than I ever did in my entire life! The food sets on the Hallmark channel and all the series and movies, Omg yummmmm... and they "waste" so much food on these sets!... Anyway... done with today's Radiation, back on the freeway with Uber Scott and headed now for status Labs for chemo tomorrow. </p><p>So many say, Don't Let Cancer Be Your Life... well heck, how can it not be? My whole life for the last 11 years had to be focused on Treatment, which then Triggered pretty challenging Side Effects! "Oh, but Julie, you look so good, you sound so good, you seem so strong".. Guess I'm just way too good of an "actress" on Steroids lol... But this Fatigue is just soooo disabling and I don't post "awful" pictures of myself, so that's most likely why "everyone" thinks I'm so ok. If I was to post my Crash day pics, oh boy, would everyone "know" I am a Cancer Patient for sure. I was more "functional" during so many previous years because my Reds and Platelets and Hemo were ok. Had NO Idea how those levels would affect my functionality. Seriously incredible how our Immune System and blood levels regulate so much of how we are. Guess I should have taken more A&P, Biology, Chemistry, etc classes in college. Ok, just push forward Julie and maybe some sort of "magic" will happen this year for me...</p><p>And now... your thoughts on this whacky lab result... What the Heck IGA? Does this mean they can't even measure the level anymore becuase it's so high? But hoping, just maybe, it was a processing error? Never had the " > " sign before!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-HhZ09KwFGIo/YBhotdTHvHI/AAAAAAAAHUU/Ib_V3LEN1IQHYvaB8xhfixikNc14y0PNwCLcBGAsYHQ/s1162/Screenshot_20210130-111936_Chrome.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1162" data-original-width="1080" height="320" src="https://1.bp.blogspot.com/-HhZ09KwFGIo/YBhotdTHvHI/AAAAAAAAHUU/Ib_V3LEN1IQHYvaB8xhfixikNc14y0PNwCLcBGAsYHQ/s320/Screenshot_20210130-111936_Chrome.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-EZpwZz_FkeA/YBiLS3qnEQI/AAAAAAAAHUo/VqqRpdIYS2YS32qjec6BHX2WZ5RhFDTSwCLcBGAsYHQ/s2048/2821b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-EZpwZz_FkeA/YBiLS3qnEQI/AAAAAAAAHUo/VqqRpdIYS2YS32qjec6BHX2WZ5RhFDTSwCLcBGAsYHQ/s320/2821b.jpg" /></a></div><p style="text-align: left;">So getting this blood transfusion was so crazy and humbling! After Radiation last week, I then went to another Kaiser clinic for the blood transfusion. Did Labs there, and then waited. And waited. And waited. Turns out because of the amount of time I've had Myeloma, and the amount of Treatments I have had, and my 2010 Stem Cell Transplant, my blood has Mutated so much, they had to process the Donation in a specific way. And get this, it was FLOWN from Nor Cal to So Cal just for me. Not Kidding. And there was one other cancer patient in the clinic with me with a similar issue. So finally around 3:30pm I was able to receive this Donation, and staff even stayed late to take care of me for the entire infusion. I am just so grateful and overwhelmed with the Wonderful Care I receive at Kaiser. Just Amazing and Fabulous Caring staff!!!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-HEy0Pi6nlM4/YBnQwVQVPFI/AAAAAAAAHWQ/FpV9OTymfpMbwdSGgJQzl9-D6DHZTpsWgCLcBGAsYHQ/s2599/20210202_142112.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1210" data-original-width="2599" height="186" src="https://1.bp.blogspot.com/-HEy0Pi6nlM4/YBnQwVQVPFI/AAAAAAAAHWQ/FpV9OTymfpMbwdSGgJQzl9-D6DHZTpsWgCLcBGAsYHQ/w400-h186/20210202_142112.jpg" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div>Can you find my Abdominal "Alien" Mass? Look for the Softball size circle with the measurement:</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-1RldtFfiYHU/YBnMpCDjhgI/AAAAAAAAHWA/m9OtfcGzEKchl64khGR61XJUyrPEss0ewCLcBGAsYHQ/s2048/20210128_170257.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1648" height="320" src="https://1.bp.blogspot.com/-1RldtFfiYHU/YBnMpCDjhgI/AAAAAAAAHWA/m9OtfcGzEKchl64khGR61XJUyrPEss0ewCLcBGAsYHQ/s320/20210128_170257.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div>Sure wish all this was color coded. But you can see where the circle is with the measurement. No wonder I feel 6 months preggo. Ugh, How did this happen? How did I let this happen. I believe this monster was noticed on a Scan in 2019 right as Jim was beginning to go down hill, so I brushed it off, and said I would deal with it later. Did not really comprehend what it was, what was happening, how serious it was, and with the Lung Mass too. And stupid, naive me, I just thought it would "just go away", that the chemos I was on would disentigrate it. Extramedullary! OMG, I just kept thinking at the time, "this serious stuff can't happen to me"... lol blonde lol...</div><div><br /></div><div>Still on Dex steroids, Darzalex, Pomalyst, Velcade. I'm probably Refractory to all of them, but we'll see. I will brave up and mix in one, some, more, others, I haven't done yet. </div><div>ANY RECOMMENDATIONS my Myeloma Buddies??</div><div><br /></div><div>Thanks for reading and caring as you do, and I hope you have a great February, without any Drama!</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/fCR0ep31-6U" width="320" youtube-src-id="fCR0ep31-6U"></iframe></div><div style="text-align: center;">Remember this classic!</div><div style="text-align: center;">"I Will Survive"</div><div style="text-align: center;">Thank you Gloria!</div><div style="text-align: center;">I am trying so hard to Survive...</div><div><br /></div><div><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com6tag:blogger.com,1999:blog-6542378222548786727.post-46906992436209568102021-01-28T09:47:00.003-07:002021-01-29T10:48:44.547-07:00Chemo, Radiation, Labs, Radiation, Myeloma Raging<p>1.28.21</p><p>So much going on...</p><p>Dr appts under the influence of high dose Steroids and 50mg IV Benadryl. So funny. My mouth and brain are outside my body talking, and I make little sense. I have to learn to just chill, sleep and let the conversations go... Love the extremities of the meds. Never did drugs, alcohol before, so all this is a fun, crazy ride for me. If only I wasn't being killed inside by Myeloma.... Thank goodness I tolerate so much, so well. Don't know why, but I do. Maybe because all my organs were in good shape when I was Dx Dec 2009? Except why are my Platelets now crashing. They cooperated for years? Is it because Myeloma has munched all it can inside my Bone Marrow, and things just don't do what they're suppose to do now? Will have to read up on that. Dr wants to do a Bone Marrow Biopsy soon. I vigorously shook my head NO, not now!!!... just too much to handle. I haven't even had the time to appropriately mourn my dear Jim, even tho I talk to him in house all the time. So much of my life right now, is JUST ONE FOOT IN FRONT OF THE OTHER, TRYING NOT TO FEEL, NOT THINK, NOT PROCESS... JUST DO WHAT WILL SAVE MY LIFE... </p><p>So I'm on Darzalex IV, Velcade shots, Pomalyst pills, Steroids, and now, Zarxio Neupogen for 5 days, Acyclovir, Vitamins, antacids, tums, Zofran for the Abdominal Alien Radiation for 5 days, more if necessary... and more things I'm not remembering now, LOL... Would love to have coffee for my early drives to Radiation, but terrified of GI issues on the Freeways. How do "normal people" communte long distances, without a pottie in the car. Well I have to remember I AM NOT NORMAL ANYMORE, AND MY SYSTEM TOTALLY CHANGED WITH THE STEM CELL TRANSPLANT AND ALL THE CHEMO MEDS FOR 11 YEARS. So when "biology" needs to happen... oh boy, I better be near my bathroom or another CLEAN ONE. I just hate gross public bathrooms, and if I pulled off the freeway, I'd never make to the bathroom in a restaurant or hotel, or wherever. I do have "funny stories" from back in the day of early treatments, winding up in a Porta Pottie, etc.. I'm bringing a little trash can in my car the next few days LOL. </p><p>I woke up around 3:30am in anticiaption of my crazy day and days ahead,,,, then decided at 4am to just wake up, take the Steroids, but then I couldn't get back to sleep (set my alarm for 6am) to begin the "cleanse" process before I get on the freeway. HOW DO ALL MY MYELOMA PATIENT FRIENDS DO THIS? OR DO YOU NOT HAVE HAVE "LOWER GI" ISSUES LIKE I DO??? Monday my Radiation appt is at 8am... might as well never go to sleep, or I'll just be even more "Anorexic" than I currently am, so I don't have to worry about Freeway Biology Drama!!!!. It's a losing battle for me. If I eat, then GI drama. If I don't eat, Myeloma wins. </p><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bXrYTFyTIC0/YBLj0qhveQI/AAAAAAAAHTg/SA38kNKgMF4jh7buX7E54XgoF2C0kuWEwCLcBGAsYHQ/s2048/26r.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-bXrYTFyTIC0/YBLj0qhveQI/AAAAAAAAHTg/SA38kNKgMF4jh7buX7E54XgoF2C0kuWEwCLcBGAsYHQ/s320/26r.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p>Here's some screen shots for you, and then off to the Freeways for Radition this morning and then Blood Transfusion later... Cancer, at least for me, is a Full Time Job... If only I could get back to who I was with out all the complications of Tumors, Masses, Extramedullary, etc. How about "just chemo" you smart, mutating, angry, take over my body and life Myeloma? How about giving me just a little a break so I do little things around here with the Critters, the House, my Family and Friends? How about giving me my belly back Myeloma, so I can eat and not feel 6 months preggo. Oh, just shut up Julie, you're being eaten alive by Myeloma, and Myeloma's just laughing at it's success in this Host.... </p><p style="text-align: center;">IGA</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TZwxbhX4340/YBLjFG8yRbI/AAAAAAAAHS0/po-lTH1fJvYxRTX0R6TAoKQxcqpMAkIFwCLcBGAsYHQ/s1808/21ia.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1808" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-TZwxbhX4340/YBLjFG8yRbI/AAAAAAAAHS0/po-lTH1fJvYxRTX0R6TAoKQxcqpMAkIFwCLcBGAsYHQ/w239-h400/21ia.jpg" width="239" /></a></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-VbOldsBOCi4/YBLjMd01_1I/AAAAAAAAHS4/1pMDhFe8pkEm3OrCAndOTaSs9lxocRzkgCLcBGAsYHQ/s2005/27l.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2005" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-VbOldsBOCi4/YBLjMd01_1I/AAAAAAAAHS4/1pMDhFe8pkEm3OrCAndOTaSs9lxocRzkgCLcBGAsYHQ/w215-h400/27l.jpg" width="215" /></a></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-KM29MD2yXXI/YBLjTL0p5CI/AAAAAAAAHS8/0q_7rxowajc9TXfOYkABWhrW82_slyTKgCLcBGAsYHQ/s2004/27m.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2004" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-KM29MD2yXXI/YBLjTL0p5CI/AAAAAAAAHS8/0q_7rxowajc9TXfOYkABWhrW82_slyTKgCLcBGAsYHQ/w215-h400/27m.jpg" width="215" /></a></div><div><br /></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7P0ISGxVjv4/YBLjZV24g4I/AAAAAAAAHTE/P5hLHY4S3BMQGMmOcYrqX-uJBKCFeEkxgCLcBGAsYHQ/s2004/27m.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2004" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-7P0ISGxVjv4/YBLjZV24g4I/AAAAAAAAHTE/P5hLHY4S3BMQGMmOcYrqX-uJBKCFeEkxgCLcBGAsYHQ/w215-h400/27m.jpg" width="215" /></a></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Df83XJDYBtY/YBLjgQ-BV8I/AAAAAAAAHTM/ECYZHbwG980JRDjHCvq0Y7y73hnJqNfnwCLcBGAsYHQ/s2004/27p.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2004" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-Df83XJDYBtY/YBLjgQ-BV8I/AAAAAAAAHTM/ECYZHbwG980JRDjHCvq0Y7y73hnJqNfnwCLcBGAsYHQ/w215-h400/27p.jpg" width="215" /></a></div><div><br /></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-hRcVXV08QFE/YBLjmQgY66I/AAAAAAAAHTU/AVsmSgYoSFI_bLYXjQkJr8p2D8yFFv4iQCLcBGAsYHQ/s1864/27w.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1864" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-hRcVXV08QFE/YBLjmQgY66I/AAAAAAAAHTU/AVsmSgYoSFI_bLYXjQkJr8p2D8yFFv4iQCLcBGAsYHQ/w231-h400/27w.jpg" width="231" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bA9FlCIQ_UY/YBLnpHkBIlI/AAAAAAAAHTw/LjJEy-HULSQ5UvI-aw30DYpojfE9oF_2gCLcBGAsYHQ/s2048/27b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-bA9FlCIQ_UY/YBLnpHkBIlI/AAAAAAAAHTw/LjJEy-HULSQ5UvI-aw30DYpojfE9oF_2gCLcBGAsYHQ/w240-h320/27b.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-wUgnqlJ7kNE/YBLn1S93wlI/AAAAAAAAHT0/xReR520-oH0-vvwww1Z2GT0UGkFsFWTFgCLcBGAsYHQ/s2048/27o.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-wUgnqlJ7kNE/YBLn1S93wlI/AAAAAAAAHT0/xReR520-oH0-vvwww1Z2GT0UGkFsFWTFgCLcBGAsYHQ/w300-h400/27o.jpg" width="300" /></a></div><br /><p>And so, I make another day! I used to think of all this as a "challenge" and I'm gonna beat Myeloma. Now, I'm tired. I'm exhausted. I'm beat up. I'm not brave anymore, altho everyone I meet is amazed I've lasted 11 years with Myeloma, Drs, Nurses, Patients, etc... I just want a bit of my life back. No pain, No Masses, No Fractures, No drama... Myeloma, you are very very smart, and I underestimated you...</p><p>Thanks for reading and caring as you do... more to come... So many "adventures" in Julie's Myelomaland... </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TNAxzzmh_uI/YBLqo6QX3gI/AAAAAAAAHT8/nxaKx8FkInssBnFDgI2jvO_m251bHISfwCLcBGAsYHQ/s2048/26rd.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-TNAxzzmh_uI/YBLqo6QX3gI/AAAAAAAAHT8/nxaKx8FkInssBnFDgI2jvO_m251bHISfwCLcBGAsYHQ/s320/26rd.jpg" /></a></div><br /><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-74695564983621612442021-01-21T01:25:00.007-07:002021-01-25T20:47:57.740-07:00Something Amazing Happened Today :))<p> 1.21.21</p><p>Thank you Zarxio/Neupogen and of course 3 days of Dex Steroids... something Totally Amazing Happened Today 1.21.21 :))</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7YxhkemI9SU/YAqM_BuXB_I/AAAAAAAAHSM/3IeoH6PB_8sfXY6TaQSCQYTX4V1_Zjs_wCLcBGAsYHQ/s2048/20210121_171354.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-7YxhkemI9SU/YAqM_BuXB_I/AAAAAAAAHSM/3IeoH6PB_8sfXY6TaQSCQYTX4V1_Zjs_wCLcBGAsYHQ/s320/20210121_171354.jpg" /></a></div><p><br /></p><p>Have CT scan tomorrow, Friday 1.22.21, then phone-video appt with Radiology Oncologist on Monday 1.25.21 to plan Radiation Annihilation of my Abdominal "Alien" Mass, then Chemo and Dr appt Tues 1.26.21... so I will have a lot to share next week!!!</p><p>But until I do all that, here's a hint of the Amazing 1.21.21 story I made it to!!</p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-E-0U96semmM/YA-PURPTxuI/AAAAAAAAHSk/8JUM4h6BzxkjypSegk5AYMIGOUHOhMSswCLcBGAsYHQ/s859/21.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="859" data-original-width="668" height="400" src="https://1.bp.blogspot.com/-E-0U96semmM/YA-PURPTxuI/AAAAAAAAHSk/8JUM4h6BzxkjypSegk5AYMIGOUHOhMSswCLcBGAsYHQ/w311-h400/21.jpg" width="311" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Ddm_AQjEw_g/YA-P994c4lI/AAAAAAAAHSs/WZPzMB84sDUfdRkZO3x3MfkFmQk7U99xwCLcBGAsYHQ/s960/121.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-Ddm_AQjEw_g/YA-P994c4lI/AAAAAAAAHSs/WZPzMB84sDUfdRkZO3x3MfkFmQk7U99xwCLcBGAsYHQ/s320/121.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-6_9mOZ248oc/YAqNYmEx68I/AAAAAAAAHSU/_JpxKaPyeHo5zPyWFBQ2zqEQqa5dXo1FACLcBGAsYHQ/s2048/20210121_200350.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-6_9mOZ248oc/YAqNYmEx68I/AAAAAAAAHSU/_JpxKaPyeHo5zPyWFBQ2zqEQqa5dXo1FACLcBGAsYHQ/s320/20210121_200350.jpg" /></a></div><br /><p>Beautiful day, beautiful couple. Thank you Universe for giving me life, energy, and medication to be able to do this :)) </p><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com10tag:blogger.com,1999:blog-6542378222548786727.post-12483575885922911452021-01-11T13:56:00.047-07:002021-01-15T00:01:41.698-07:00The Body Sabotage Continues Non Stop, Go Away Myeloma<p> 1.11.21</p><p>Hello Friends and Loyal Followers. </p><p>Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ThGL2HvUtSE/X_4dv3SULuI/AAAAAAAAHR4/pPx0hrp2ro4PC8oKvHSchSDYa0w4W76SQCLcBGAsYHQ/s416/11y.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="416" data-original-width="416" height="320" src="https://1.bp.blogspot.com/-ThGL2HvUtSE/X_4dv3SULuI/AAAAAAAAHR4/pPx0hrp2ro4PC8oKvHSchSDYa0w4W76SQCLcBGAsYHQ/s320/11y.jpg" /></a></div><p>I have to make this short, as I have reacurring bloody nose episodes and don't want to bleed out on my computer. I had written some deep thoughts yesterday to post, but never finished it and don't have energy to finish it now. Maybe I will later... </p><p>I'll add screenshots of my results as they come in, so be sure to check back :)) as well as updating you on my new 2021 treatment plans. </p><p>So quickly, here are the Lab results that have come in for my appt with the Myeloma Specialist on Tuesday (tomorrow). I was surprised how high (as in "bad" high) they were. Haven't had results as high as this, on these particular tests:</p><p><br /></p><p style="text-align: center;"><b><u>Beta2</u></b></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Lvzdjw-7DqU/X_y2tzwrnPI/AAAAAAAAHRI/5E7GFog8K_gpQmEzKbil4qfAgr0r3etuQCLcBGAsYHQ/s1690/121b2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1690" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-Lvzdjw-7DqU/X_y2tzwrnPI/AAAAAAAAHRI/5E7GFog8K_gpQmEzKbil4qfAgr0r3etuQCLcBGAsYHQ/w255-h400/121b2.jpg" width="255" /></a></div><div class="separator" style="clear: both; text-align: center;">WOW... 10.8 for Beta2?</div><div class="separator" style="clear: both; text-align: center;">Wonder if that's a world record yet?</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><b><u>Total Protein</u></b></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-XN3rTwSmH1s/X_y273-QixI/AAAAAAAAHRM/dcs58P70pu8NoZ33HKQUz1e5BckSidUvgCLcBGAsYHQ/s1808/121b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1808" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-XN3rTwSmH1s/X_y273-QixI/AAAAAAAAHRM/dcs58P70pu8NoZ33HKQUz1e5BckSidUvgCLcBGAsYHQ/w239-h400/121b.jpg" width="239" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">And 12 for Total Protein, </div><div class="separator" style="clear: both; text-align: center;">Never had anything like that before </div><div class="separator" style="clear: both; text-align: center;">and actually never paid much attention to this value</div><div class="separator" style="clear: both; text-align: center;">as it was always in the "normal" range. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"> <u><b>I</b><b>GA</b></u></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-QzrB1iiBdTo/X_4adAFgvLI/AAAAAAAAHRo/rkqCQsQHLCY-9dnx-d-YmAt1bmbfkkz8ACLcBGAsYHQ/s1822/11iga.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1822" data-original-width="1078" height="400" src="https://1.bp.blogspot.com/-QzrB1iiBdTo/X_4adAFgvLI/AAAAAAAAHRo/rkqCQsQHLCY-9dnx-d-YmAt1bmbfkkz8ACLcBGAsYHQ/w236-h400/11iga.jpg" width="236" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">OMG up up and away we go :((</div><div class="separator" style="clear: both; text-align: center;">Never been this High before...</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><b><u>M Protein below</u></b></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-RVKi2KtUQgs/X_4a2urBn8I/AAAAAAAAHRw/8qhRGTSrcvAPSztZYikabY4QSte5FHsQACLcBGAsYHQ/s2004/11mp.jpg" style="margin-left: 1em; margin-right: 1em;"><b><img border="0" data-original-height="2004" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-RVKi2KtUQgs/X_4a2urBn8I/AAAAAAAAHRw/8qhRGTSrcvAPSztZYikabY4QSte5FHsQACLcBGAsYHQ/w215-h400/11mp.jpg" width="215" /></b></a></div><br /><div class="separator" style="clear: both; text-align: center;">Yikes!</div><div class="separator" style="clear: both; text-align: center;">It's never been this High :((</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">I'm so sad Myeloma is so intent on doing me in. I have so much life I want to live... we'll see how the <strike>new combo of Ninlaro, Darzalez, Dex does.</strike> Last week was my first with these 3. Have had Darza previously with great success, and Ninlaro is in the Velcade family, and I did great with Velcade for quite some time too... and Dex steroids. Well I'm ditching the High Dose 40mg for 4 days on, as it's bloated me up along with my Extramedullary Abdominal tumor mass Alien. I look preggo, my belly is so bloated with my Alien. Helllllo Nooooo to that continuing! I barely eat now, as I can't stand the bloated, full feeling. The idea of food still appeals to me, and I do eat tiny bits at a time, but all the fun things I prepared before, ugh, just can't eat now without feeling like a preggo BroodMare. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I have frequent bloody nose episodes. Like blood pouring out like a faucet. Today I thought I had plugged it up, took the tissue out of my R side nose, and SPLAT, lovely red myeloma blood all over the floor. This is due to the lack of Platelets now. I didn't post those results, but my CBC's are not happy, to say the least... Never had such bad labs :((</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-8wJL2sRZhtw/X_y5k8qqikI/AAAAAAAAHRY/NkU9kRvNMwoFngQ0z_HWrI_3EOwCxKj6ACLcBGAsYHQ/s2048/121p.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://1.bp.blogspot.com/-8wJL2sRZhtw/X_y5k8qqikI/AAAAAAAAHRY/NkU9kRvNMwoFngQ0z_HWrI_3EOwCxKj6ACLcBGAsYHQ/s320/121p.jpg" width="320" /></a></div><div style="text-align: center;">Time to build up those lovely Platelets and supportive blood.</div><div style="text-align: center;">Myeloma, you're just too smart and know just how to sabotage me.</div><div style="text-align: center;"><br /></div><div style="text-align: left;"><strike>So when my IGA and M Protein status comes in, I will screenshot that for you.</strike></div><div style="text-align: left;">I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. <b>Yep, and there they are above, super High </b>:((</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And please don't be offended,...... but I spoke at length with the Medical Social Worker the other day, and want to get the process going for ELO (End of Life Options). I am in no rush, seriously, NO Rush, just want to have OPTIONS,<b><i> in case I don't have any more options</i>, </b>in case my situation becomes so dire, so unbarable I cannot breathe, move, function, or I can't care of my personal needs, I develop more and new painful fractures all over, or I'm paralyzed from fracture/bone breaks, the tumors have invaded everywhere, I can't eat and enjoy, the pain is overwhelming, and there is absolutely <b>No Hope, Zero Hope,</b> for anything helping me or healing me, and all I can do is lay in a Hospital Bed and "wait" for the end to come... Remember, I went thru all of the drawn out, lingering End of Life experiences with my dear husband Jim, when Alzheimer's completely stole his life. As an Alz, Dementia patient you don't have any options (legally and psychologically). The end is just suffer, suffer, suffer... and for the family to wait, wait, wait, watch, watch, watch, along with Hospice assistance... I would of course make this decision with my Adult children, not all by myself...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">If you have NetFlix, there was an episode in "Grace and Frankie", about the ladies's friend who chose this option. She threw a great party, then privately passed. How ironic that I am watching this series, and this episode is there. She had "no more options", so this was her choice of how she wanted to exit the earth. And I emphasize, I would only choose this route, IF THERE WERE NO MORE OPTIONS, AND I'M ONLY SUFFERING BEYOND SUFFERING... I would NOT do this option if my kids did not agree.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And yes, I have decided to do Clinical Trials after I have gone thru all the FDA approved Myeloma treatments. I will do the Phase that has the most options and the researchers know the side effects. Because honestly, as I have mentioned a zillion times, I will not spend my last weeks, days with my head in the toilet... </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;">I will continue this post as more results or chemo changes come in. So please continue to check back. </div><div style="text-align: left;"><b><u><br /></u></b></div><div style="text-align: left;"><b><u>UPDATE- 1.13.21</u></b></div><div style="text-align: left;"><b><u><br /></u></b></div><div style="text-align: left;"><b>Chemo regimen change - </b></div><div style="text-align: left;">Bye bye <b>Ninlaro</b> pills </div><div style="text-align: left;">Hello <b>Velcade shots</b> again</div><div style="text-align: left;">Hello again to <b>IV Darzalex</b></div><div style="text-align: left;">Hello again to<b> Pomalyst pills</b></div><div style="text-align: left;">And of course <b>Dex Steroid pills</b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;">Will do 5 days of <b>Zarxio-Neupogen </b>to raise low WBC</div><div style="text-align: left;">Will do a bag of <b>Platelets</b>, and </div><div style="text-align: left;">2 bags of <b>Blood</b></div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;"><b>Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish </b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for reading and caring as you do. </div><div style="text-align: left;">You help make my life feel valuable :)) </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bMBeCHIzWA4/X_y7WXMkCYI/AAAAAAAAHRg/vtynAKeALCgW6GkXMPo8W_H9BP0FVHrmACLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-bMBeCHIzWA4/X_y7WXMkCYI/AAAAAAAAHRg/vtynAKeALCgW6GkXMPo8W_H9BP0FVHrmACLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div style="text-align: left;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com6tag:blogger.com,1999:blog-6542378222548786727.post-16774099458535654792021-01-01T14:32:00.036-07:002021-01-06T00:01:18.348-07:00Hello to Posting on the 1's - And The New Treatment Plan Revealed! <p>1.1.2021 <span> </span>January 1, 2021 <span> </span><span>1.1.21 </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span></p><p>Happy Happy 2021 Friends and Loyal Followers! It's Good Bye and Good Riddance to drama filled 2020!</p><p>It hit me this morning that with my 11 years of Myeloma Survival, it's time to roll from posts on the 0's representing my 10 years of survival, to now represent my 11 years of survival with posts on the 1's! Yes I've become quite the symbolic numbers girl, and it's fun for me to notate my life in symbolic numbers! Sorry if this confusing to you, but if you've been following my blog for a while, then you get it :))</p><p>So for 2021, I'll be posting my crazy life updates on the 1's, 11's, 21's and 31's. Ironically today, is the 1st day of 2021, so here I am, posting my first 11th year of survival post of 2021, and I actually have treatment update news for you! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-eWggmGFBR40/X--KZDiB9AI/AAAAAAAAHQQ/cTEMhJKGKxYm3u8Iw2wAHIs-v_8UdOgFQCLcBGAsYHQ/s1003/21f.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="669" data-original-width="1003" height="266" src="https://1.bp.blogspot.com/-eWggmGFBR40/X--KZDiB9AI/AAAAAAAAHQQ/cTEMhJKGKxYm3u8Iw2wAHIs-v_8UdOgFQCLcBGAsYHQ/w400-h266/21f.jpeg" width="400" /></a></div><div><br /></div>After all the medication and fear options I wrote about in my last 2010 post, my Dr called me late in the day yesterday, New Year's Eve 2020, to discuss what my next plan of action will be, starting next week! I had sent her an email with all kinds of chemo combo options, and she was so kind to call me before the office closed for the NYE holiday. Yes, I am now "looking forward" to getting started on a new chemo/immunotherapy option fast, to get this dang Myeloma, and it's tumors, masses, fractures, etc, under control. I've done a lot, and I mean a lot, of thinking, forced myself to brave up, and put my fears aside now. I've have had to psychologically process so much in these last several months of 2020, it's like a movie script. So now it's time to get going on pummeling Myeloma in 2021!<div><br /></div><div>We discussed all the options and combos of treatments that I have done previously, and all the possible options I have not done yet. We also know I need to be on a combination of multiple meds, that target Myeloma from several angles. So here's to hoping I don't have a HORRIBLE REACTION to the New chemos, immunotherapipies, like I did with killer Elotuzumab-Emplicity. </div><div><br /></div><div><b><strike>And the plan is.... Xpovio/Selinexor...</strike></b></div><div><div style="text-align: center;"> <b>Nope that was changed as of 1.4.21 LOL</b></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jHoPi70R6TM/X--OL-6xfsI/AAAAAAAAHQY/G6YWG_Zv358LSnEokx05DYE14W2Tqam3gCLcBGAsYHQ/s550/21s.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="197" data-original-width="550" height="144" src="https://1.bp.blogspot.com/-jHoPi70R6TM/X--OL-6xfsI/AAAAAAAAHQY/G6YWG_Zv358LSnEokx05DYE14W2Tqam3gCLcBGAsYHQ/w400-h144/21s.jpg" width="400" /></a></div><br /><b>Paired with our fave Dex Steroids, possibly paired with Darzalex, and or Ninlaro, and or Pomalyst, and or all of them together LOL! </b>Xpovio-Selinexor was one of the meds I was wanting to avoid lol, as it causes Upper GI reactions :(( but I have to accept yucky side effects to kill off Myeloma, before it kills me, right. So I've braved up, and I'll start taking this 3 or 4 drug regimen beginning next week. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-afC8yHKAjAE/X_Nj94zZRoI/AAAAAAAAHQ0/ONl5SGWavHAzP9HUBWGKJ_wQn88TrcKLgCLcBGAsYHQ/s469/Pom.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="107" data-original-width="469" height="91" src="https://1.bp.blogspot.com/-afC8yHKAjAE/X_Nj94zZRoI/AAAAAAAAHQ0/ONl5SGWavHAzP9HUBWGKJ_wQn88TrcKLgCLcBGAsYHQ/w400-h91/Pom.jpg" width="400" /></a></div><span> </span><br /><div style="text-align: center;"><strike>Pomalyst, been there, done that before, caused very low CBCs</strike></div><div style="text-align: center;"><strike>but has good success previously</strike></div><div style="text-align: center;"><strike><b>Nope, that was changed on 1.4.21</b></strike></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-r7I0OGfUByc/X_NkL0KmwbI/AAAAAAAAHQ4/Y2lLXC7sP8AM4Mf3d4ROqGt-M-KUsPBjwCLcBGAsYHQ/s280/darz.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="209" data-original-width="280" height="299" src="https://1.bp.blogspot.com/-r7I0OGfUByc/X_NkL0KmwbI/AAAAAAAAHQ4/Y2lLXC7sP8AM4Mf3d4ROqGt-M-KUsPBjwCLcBGAsYHQ/w400-h299/darz.jpg" width="400" /></a></div><br /><div style="text-align: center;"><b>Darzalez... Yes!! Began 1.5.21</b></div><div style="text-align: center;">Been there, done that, and with good success</div><div style="text-align: center;">until the study protocols recommended going from weekly to </div><div style="text-align: center;">every 2 weeks, then to monthly. My stikn "high risk"Myeloma requires</div><div style="text-align: center;">continual treatment, no matter the recommendation of the clinical trials.</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-unyLPnLShL8/X_NkX36mG5I/AAAAAAAAHQ8/sOeF6S1BZ48AAXJf23E5bSG5lhmqCjP8QCLcBGAsYHQ/s575/nin.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="326" data-original-width="575" height="226" src="https://1.bp.blogspot.com/-unyLPnLShL8/X_NkX36mG5I/AAAAAAAAHQ8/sOeF6S1BZ48AAXJf23E5bSG5lhmqCjP8QCLcBGAsYHQ/w400-h226/nin.png" width="400" /></a></div><br /><div style="text-align: center;">New to me, and in the Velcade class of meds</div><div style="text-align: center;"><b>Yes, this was prescribed to me along with the Darzalex! </b></div><div style="text-align: center;"><b>Will take 1st pill after Darza infusion 1.6.21</b></div><div style="text-align: center;">Read too many possible side effects of Nausea vomiting</div><div style="text-align: center;">so I don't want to do that after my first Darza infusion 1.5.21</div><div style="text-align: center;">and possibly not make Day 2 on 1.6.21</div><div style="text-align: center;"><br /></div><div style="text-align: left;">So we will see which 3 or 4 combo of IV infusions and pills my Dr and the Myeloma Specialist from the SCT BMT Kaiser COH Dept recommends.</div><div style="text-align: center;"><br /></div><div>Here's the link to all the FDA approved Myeloma drugs we discussed:</div><div><a href="https://www.myeloma.org/multiple-myeloma-drugs" target="_blank">https://www.myeloma.org/multiple-myeloma-drugs </a></div><div><br /></div><div>Here's the link for Xpovio Selinexor:</div><div><a href="https://www.myeloma.org/xpovio-selinexor" target="_blank">https://www.myeloma.org/xpovio-selinexor </a></div><div><br /></div><div>And ironically, on one of the Selinexor links, there's study-trial of how it may fight Covid 19 also!</div><div><a href="https://nortonhealthcare.com/news/selinexor-covid-19-trial/" target="_blank">https://nortonhealthcare.com/news/selinexor-covid-19-trial/</a></div><div><br /></div><div>I asked her to start me on a lower dose to begin with, so I'm not living in the bathroom 24 7, but we talked about so much, I'm not sure what dose I will be doing with which. When I found the pictures above, I didn't realize there were so many dose options for each medication, so I will contact her and find out what RX she is planning for me. </div><div><br /></div><div><b>Any of you out there that have done the combo of of any of these?</b> If you have, please let me know how it went for you. We will also plan for anti nausea meds too, for sure. I do always keep melt-away Zofran pills in my stockpile, but rarely ever need them. So we'll see what this 3 or 4 combo brings me. The side effects from all are pretty intense, but I've done a multiple drug combo many times before. I just hope to build my Platelets, Hemoglobin, Reds, Whites, etc, back up, so I don't feel so completely Fatigued and physically beat up and worthless all the time. I have had periodic nose bleeds in the last few months, but not as intense as I did before diagnosis in 2009. </div><div><br /></div><div>I've also have more pain, pressure and breathing problems in my R side Chest, Lung area, and Abdominal areas. I feel so bloated and full all the time. Guess these masses are taking up a lot of real estate in my body cavity now. Ugh, the Lung Mass feels like something is putting pressure on it, or a rib is puncturing it. Dang, I just can't catch a "break". LOL Julie, maybe something there did "break"?? And I feel a pain where the Abdominal Mass is, above the Kidney, Liver, Adrenal is. It's a weird "fullness" I've not felt before. Darn it, when I start to feel relief in one area, I get sabotaged by another. I just don't understand all this suffering the Universe and my body is challenging me with :((</div><div><br /></div><div>Soooooo, Cheers to a better year for all of us, and let's hope the world can move forward to a better situation than 2020 was! Germs, cooties, viruses, bacteria, cancer, illness, etc, is such a powerful and smart saboteur in our lives... </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ELBSngEIYY0/X--UH8c9bCI/AAAAAAAAHQg/2vWObEcxRWwzfXxfMnQOs0a7J0QeeMQQACLcBGAsYHQ/s1264/21d.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="792" data-original-width="1264" height="251" src="https://1.bp.blogspot.com/-ELBSngEIYY0/X--UH8c9bCI/AAAAAAAAHQg/2vWObEcxRWwzfXxfMnQOs0a7J0QeeMQQACLcBGAsYHQ/w400-h251/21d.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">I may post sooner than the next symbolic 1... as I'm sure I'll have plenty of news to share this month! But for sure, I'll be back on the 11th, 21st, and 31st :)) Thank you for checking in and caring about my journey. Be well, stay well, and most importantly, LIVE YOUR LIFE HAPPILY and GRATEFULLY EVERY DAY!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-YfrxNx1sYEc/X--UO6mtxyI/AAAAAAAAHQk/sd9_yNcg1OMdCFe9bMHmdxlUr9M0CvUOwCLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-YfrxNx1sYEc/X--UO6mtxyI/AAAAAAAAHQk/sd9_yNcg1OMdCFe9bMHmdxlUr9M0CvUOwCLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com3tag:blogger.com,1999:blog-6542378222548786727.post-60909688559241040292020-12-30T02:12:00.125-07:002020-12-31T14:33:34.928-07:00Out With 2020, In With 2021 with New Choices and Decisions To Make<p> 12.30.20</p><p>Hello Friends and Loyal Readers-</p><div style="text-align: left;"><i style="text-align: center;">"HAPPY" (haha!) 11 YEAR MYELOMA DIAGNOSIS ANNIVERSARY TO ME </i></div><div style="text-align: left;"><i style="text-align: center;">TODAY, DECEMBER 30!!!</i></div><div style="text-align: left;"><i style="text-align: center;"><br /></i></div><div style="text-align: left;">Can you believe I have been FIGHTING Myeloma for 11 years now? I should be "dead", but so darn grateful, thankful, blessed to still be here. Seriously unreal, and unbelievable, right! 11 years, wow!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">On this day, <b>11 years ago</b>, I was diagnosed with Multiple (WTF) Myeloma. </div><div style="text-align: left;"><b>11 years ago, December 30, 2009</b>, I was diagnosed with INCURABLE MYELOMA CANCER. </div><div style="text-align: left;"><b>11 years ago changed my life forever,</b> but on that day, I could not possibly comprehend or understand what was ahead of me. </div><div style="text-align: left;">I heard the word CANCER and knew what that meant. But I sure did not know ANYTHING about Myeloma, Multiple (Who?) Myeloma. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Everyone said- "Julie, Don't Google It!", "Don't Get Online and Read!" HA! That's EXACTLY what I did that night, and continue to do almost daily, to keep informed about what Myeloma is, how it's treated, how it mutates, morphs and changes, and how this huge unforgiving train comin my way, directly at me, is ready to run me over and do me in any day...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>11 years ago, December 30, 2009, I was diagnosed with Myeloma. Multiple (OMG) Myeloma. </b>I've survived this crazy, incurable cancer roller coaster insanity called Myeloma, for longer than anyone thought I could or would. Myeloma has been trying to KILL ME for 11 years now, but I ain't going down without a huge fight!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-kkC-YBLatGQ/X-wnMpchRkI/AAAAAAAAHOU/l6nK2EA014oBVVt1Dr4zcnCzakfQ9AJ5wCLcBGAsYHQ/s1000/1130.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="977" data-original-width="1000" height="391" src="https://1.bp.blogspot.com/-kkC-YBLatGQ/X-wnMpchRkI/AAAAAAAAHOU/l6nK2EA014oBVVt1Dr4zcnCzakfQ9AJ5wCLcBGAsYHQ/w400-h391/1130.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">UNBELIEVABLE RIGHT!!!</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-a31R9hChbE8/X-wnSP__FzI/AAAAAAAAHOY/eLzZlcd6-MYUl2JhtuRRUMrXjsR9_10cACLcBGAsYHQ/s407/113009.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="407" data-original-width="331" height="400" src="https://1.bp.blogspot.com/-a31R9hChbE8/X-wnSP__FzI/AAAAAAAAHOY/eLzZlcd6-MYUl2JhtuRRUMrXjsR9_10cACLcBGAsYHQ/w325-h400/113009.jpg" width="325" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Yesterday 12.29.2020 I had a Dr consultation appointment to plan the next treatment attack. My Kyprolis IV infusion was cancelled because my CBCs, Hemoglobin, Platelets, Red Cells, etc, are too dangerously low for chemo, so I received 2 bags of blood. So many things I thought I would "never do", I do now to stay alive. <b>Thank you so very much to all the Donor Angels out there, saving our lives, One Bag at a Time!</b></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><b>11 years ago</b> I could not even fathom where I am today, but I always thought I would still be alive. Yep, I was super naive and arrogant enough to think I was "different", even though a Myeloma diagnosis is DEADLY, full on deadly. I just couldn't couldn't fully absorb I was Not going to die an old lady, walking her pony down the road, thinking it was a dog or goat :)) Myeloma just wants to eat us up alive. And at this time, there is NO CURE, just chemo options. I seriously didn't question my long term survival at diagnosis. Stupid Yes, as Myeloma is medically TREATABLE, until one's treatment options "run out". But thankfully, all the incredibly BRILLIANT MEDICAL SCIENCE RESEARCHERS and Doctors are always on the hunt for novel TREATMENT combinations for us, always researching new options and a possible "CURE" for this awful, relentless, morphing, mutating, incredibly SMART cancer. I hate you Myeloma, but from a bio-science perspective, I marvel at what cancer can do to a once healthy body... </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><b>Well, here's my most recent Lab stats, they're not happy news and kinda scary!</b></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-0yEpTjBoixU/X-ww4YvVVrI/AAAAAAAAHPM/r9FR3Qs0NdsYEcfndBQvO6-mWsd4602tACLcBGAsYHQ/s960/1227.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-0yEpTjBoixU/X-ww4YvVVrI/AAAAAAAAHPM/r9FR3Qs0NdsYEcfndBQvO6-mWsd4602tACLcBGAsYHQ/w300-h400/1227.jpg" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;">Was wishing this blood sample had </div><div class="separator" style="clear: both; text-align: center;">better news... </div><div class="separator" style="clear: both; text-align: center;">Myeloma is smart, and mutates Fast and Furiously</div><div class="separator" style="clear: both; text-align: center;">when we become "Refractory" to the treatments we are on.</div><div class="separator" style="clear: both; text-align: center;">So on to the next level of treatment...</div><div class="separator" style="clear: both; text-align: center;">Better Brave Up Julie!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7djEnKPUO2Q/X-wuemJvASI/AAAAAAAAHOk/RSS5-iOt6MIrUdc0uZjWpq3Y_BSx80m5gCLcBGAsYHQ/s1848/2720i.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1848" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-7djEnKPUO2Q/X-wuemJvASI/AAAAAAAAHOk/RSS5-iOt6MIrUdc0uZjWpq3Y_BSx80m5gCLcBGAsYHQ/w234-h400/2720i.jpg" width="234" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">IGA is my telltale status marker</div><div class="separator" style="clear: both; text-align: center;">Yikes! Almost 13x the HIGH end of Normal!</div><div class="separator" style="clear: both; text-align: center;">As they say... "Numbers Don't Lie"...</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-rviDQNBJg2U/X-wuq_4qT8I/AAAAAAAAHOo/_GW9YvjsK2AKg--69XxwOo1qDQXRkZdzQCLcBGAsYHQ/s1734/2720b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1734" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-rviDQNBJg2U/X-wuq_4qT8I/AAAAAAAAHOo/_GW9YvjsK2AKg--69XxwOo1qDQXRkZdzQCLcBGAsYHQ/w249-h400/2720b.jpg" width="249" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">How can the Beta2 increase like this in only several days? </div><div class="separator" style="clear: both; text-align: center;">Well I did reduce the 40mg Dex Steroids to 20mg for a week...</div><div class="separator" style="clear: both; text-align: center;">This week I'll do 20mg Mon, 40mg Tues, 20mg Wed, 40mg Thurs. </div><div class="separator" style="clear: both; text-align: center;">Just can't stand how poofy and bloated I am now :((</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-1bBtvKvZ2qw/X-0CQ7lLaPI/AAAAAAAAHQA/WABN7_kIytk647UOrXTTYsr3GTLmeN-HwCLcBGAsYHQ/s955/1230f.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="730" data-original-width="955" src="https://1.bp.blogspot.com/-1bBtvKvZ2qw/X-0CQ7lLaPI/AAAAAAAAHQA/WABN7_kIytk647UOrXTTYsr3GTLmeN-HwCLcBGAsYHQ/s320/1230f.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Ahahhaaaa!!! Me :)) </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-x56T88VUhRk/X-wvLnDEGYI/AAAAAAAAHO0/_j3MQR97T-Ac0QoRtwZSsIqkHQsmYuOXACLcBGAsYHQ/s960/122920b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-x56T88VUhRk/X-wvLnDEGYI/AAAAAAAAHO0/_j3MQR97T-Ac0QoRtwZSsIqkHQsmYuOXACLcBGAsYHQ/w300-h400/122920b.jpg" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;">Here I am, receiving 2 bags of donor blood-</div><div class="separator" style="clear: both; text-align: center;">Never thought I would do that, but I sure </div><div class="separator" style="clear: both; text-align: center;">Thank the Donors for their Kindness and Selflessness!</div><div class="separator" style="clear: both; text-align: center;">Everyone in healthcare are amazing soldiers, warriors and life savers!</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-VVt_M1U6v0M/X-wvwZQbaGI/AAAAAAAAHO8/xl7w3La0FkwxvprHUVAjBGiYtZfv2sXIgCLcBGAsYHQ/s960/1229jj.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="742" height="400" src="https://1.bp.blogspot.com/-VVt_M1U6v0M/X-wvwZQbaGI/AAAAAAAAHO8/xl7w3La0FkwxvprHUVAjBGiYtZfv2sXIgCLcBGAsYHQ/w309-h400/1229jj.jpg" width="309" /></a></div><div class="separator" style="clear: both; text-align: center;">I always "bring" Jim with me,</div><div class="separator" style="clear: both; text-align: center;">have his picture in his car and mine always</div><div class="separator" style="clear: both; text-align: center;">and also a pictorial "shrine" to him in the kitchen.</div><div class="separator" style="clear: both; text-align: center;">He is always with me, and I feel his presence everywhere</div><div class="separator" style="clear: both; text-align: center;">in our house and property</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-AFP9hQXlsXs/X-wwfohbXAI/AAAAAAAAHPE/3iwW9gIicG0QzP1SyHOeqAF3LQce9_GDQCLcBGAsYHQ/s960/1229bl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-AFP9hQXlsXs/X-wwfohbXAI/AAAAAAAAHPE/3iwW9gIicG0QzP1SyHOeqAF3LQce9_GDQCLcBGAsYHQ/w300-h400/1229bl.jpg" width="300" /></a></div><div style="text-align: center;">Amazing what cancer patients go thru,</div><div style="text-align: center;">and so Amazing what the body can tolerate!</div><div style="text-align: center;">How can someone eles's blood co-mingle with mine,</div><div style="text-align: center;">and my body is totally ok with it! </div><div style="text-align: center;">Can we just drain my Myeloma contaminated blood,</div><div style="text-align: center;">and replace it completely with some healthy blood :))</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;"><b>So what did my Dr and I discuss... </b></div><div style="text-align: left;">Well a lot, and know she feels bad for me, as she knows <b>Quality of Life is Most Important to me</b> at this time, and she knows I am afraid of new side effects, and she knows I am scared of changing to new chemos, immunotherapies, and she knows I don't want another SCT (even tho I have millions of my own Stemmies for another SCT), and she knows I don't want to do the Car T (as too many I know have had severe complications, and eventually passed away after it seemed so promising)... At this time, it's Hospice over Hospitalization for everything...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">So I had downloaded a copy of all the FDA approved Myeloma meds as talking points, highlighted what I have already tried, had success with, and then eventually became refractory to- </div><div style="text-align: left;"><b>Here's the list of all the meds I have done since January 2010. </b><b>Several of these I have done several times in different combinations with each other. </b>Several of these I had somewhat miminal daily side effects LOL, minimal being so relative LOL. Diarrhea, extreme Diarrhea, Nausea, intense bone, muscle, nerve pain. Extreme Fatigue. Fevers. Steroid bloating. Neuropathy, Neutropenea, etc. </div><div style="text-align: left;">Actually NOTHING about this awful journey has been minimal LOL... but the WORST for me was Elotuzumab-Emplicity that seemed to grow, encourage, morph and mutate all my tumors, lesions, fractures, masses, etc!, into the "huge" out of the bone marrow, into body cavity, "masses". June, July, August of 2020 was so awful on the daily imobilizing pain and fever scale, (and unfortunately, that was when Jim was declining so fast also, and we put him on home Hospice.) <b>So insane I am living with</b> a Mass in my R side Lung Chest area (tennis ball size), R side skull area, and R side Abdominal (near the Kidney, Liver and Adrenal Gland area), softball size. So unreal to me. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>THE BEEN THERE, DONE THIS LIST:</u></b></div><div style="text-align: left;">Dexamethasone Steroids @ 20mg or 40mg, always paired with these-</div><div style="text-align: left;">Revlimid</div><div style="text-align: left;">Cytoxan IV prior to SCT</div><div style="text-align: left;">Melphalan IV with SCT</div><div style="text-align: left;">Revlimid maintenance</div><div style="text-align: left;">Revlimid</div><div style="text-align: left;">Kyprolis</div><div style="text-align: left;">Pomalyst</div><div style="text-align: left;">Velcade</div><div style="text-align: left;">Darzalex</div><div style="text-align: left;">Cytoxan (IV for SCT 2010, pill form for treatment Sept 2019 to May 2020)</div><div style="text-align: left;">Elotuzumab Emplicity</div><div style="text-align: left;">Revlimd</div><div style="text-align: left;">Velcade</div><div style="text-align: left;">Kyprolis</div><div style="text-align: left;"><a href="https://www.myeloma.org/multiple-myeloma-drugs" target="_blank">Next up???</a> Great list here of treatment options...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>Had Radiation in 2018, for a week+:</u></b></div><div style="text-align: left;">Sacrum tumor, Skull, Ribs, Clavicle, collarbone tumor and several fractures </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>Had Radiation in 2020, 2 weeks+:</u></b></div><div style="text-align: left;">Have a Lung mass size of a tennis ball, and Abdominal mass even larger, the size of grapefruit or softball, more clavicle and rib radiation- both R and L sides</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>Became <a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">"Extramedulary"</a> in 2020</u></b></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>Add in:</u></b></div><div style="text-align: left;">Acyclovir daily to prevent Shingles</div><div style="text-align: left;">Omeprazole for Steroid stomach issues</div><div style="text-align: left;">Benadryl to prevent reactions and for sleep</div><div style="text-align: left;">Flexeril to help calm and untangel all the nerves and muscles caught in all the tumors, fractures and masses</div><div style="text-align: left;">Vitimins- B12, D3, C, Magnesium, Women's Alive, Tylenol, <strike>Opioids</strike> (that I don't use as they don't do much for me, so why use those and damage my body more!</div><div style="text-align: left;">.81 Aspirin, depending on the treatment and chance of DVT</div><div style="text-align: left;">And more I am probably forgetting</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>So what am I going to do, going forward... </b></div><div style="text-align: left;">Everyone always asks if I seek out 2nd, 3rd opinions. I don't feel I need to, as I have a wonderful Dr who consults with the whole Kaiser Onocology Team, and is very aware of how I feel about how I want to treat this awfulness. And she consults with current research, studies, and clinical trials, and follows that VERY EXACTLY. She brings up the reports, trials, treatment options, when we meet. And Kaiser is paired with <a href="https://www.cityofhope.org/clinical-program/myeloma/myeloma-treatments" target="_blank">City of Hope,</a> so I have access to any medication, treatment, drug, clinical trial, etc, I want. <b>Again, I am the one putting the brakes on many suggestions, because I AM NOT BRAVE WHEN IT COMES TO YUCKY SIDE EFFECTS!</b> But I did schedule an appointment for January, with the Kaiser City of Hope Myeloma Specialist Dr Sahebi, My local Dr will also consult with her, re my next chess move. They all work as Team and consult with each other all the time for case management and planning. What better is that? And again, I have access to ANY MEDICATION, CHEMO, IMMUNOTHERAPY, TREATMENT PLAN COMBINATION I WANT, Kaiser has never refused me anything, ever, and has always leaned towards a more "agressive" , "progressive" treatment perspective than me!</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><u>We discussed combinations of these, some I have done before, others new to me:</u></b></div><div style="text-align: left;">Thalidomide (very old school, and one of the 1st Myeloma treatments)</div><div style="text-align: left;">Cytoxan pills</div><div style="text-align: left;">Kyprolis IV</div><div style="text-align: left;">Ninlaro - Ixazomib pills</div><div style="text-align: left;">Sarclisa- Isatuximab</div><div style="text-align: left;">Darzalex</div><div style="text-align: left;">Xpovio- Selinexor</div><div style="text-align: left;">Blenrep- Belantamab</div><div style="text-align: left;"><br /></div><div style="text-align: left;">You can see all these on the<a href="https://www.myeloma.org/multiple-myeloma-drugs" target="_blank"> IMF frontline treatments, FDA approved medications</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;">And on the <a href="https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/" target="_blank">MMRF site for treatments</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;">I never was a big "risk taker", and certainly am NOT now. I used to be much more "brave" and took all this more lightly than now. But as I stare death in the face, with one foot in the grave, and know my High Risk IGA has morphed and mutated, I am more aware and scared than before, and KNOW I must make decisions I don't want to. And those decisions are:</div><div style="text-align: left;"><br /></div><div style="text-align: left;">1- <b>I can deal with Lower GI side effects, but not Upper GI side effects</b> and I know several of the newer meds are puking meds...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">2- <b>At this time, I do not want to be Hospitalized for the super duper 24 7 high dose, 4 or 5 chemos/immunotherapies at a time</b>, as with stupid Covid, my family and friends cannot visit me. Face Time, etc is not my thing and when I feel Gross, I wouldn't have energy for that. I told my Dr it's Hospice over Hospital. She understands but would still like to be more "aggressive" than me.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">3- <b>At this time, I do not want to be Hospitalized for another Stem Cell Transplant</b>, even tho I have millions of MY cells for it and it would be at the wonderful City of Hope. Maybe later on after Covid is reined in, if ever...</div><div style="text-align: left;"><br /></div><div style="text-align: left;">4- <b>At this time, I do not want to be Hospitalized for the CAR T transplant</b>, as sorry everyone, I "know" and "know of" too many Myeloma warriors that seemed to be ok at first, then tragically passed away, after thinking CAR T magically "healed and cured" them. And they were in reputable hospital clinical trails at City of Hope, and all over the USA at Myeloma Specialty hospitals..</div><div style="text-align: left;"><br /></div><div style="text-align: left;">5- <b>I will wait to see what my Dr says after consulting</b> with the Myeloma specialist at City of Hope</div><div style="text-align: left;"><br /></div><div style="text-align: left;">6- <b>I will consult with her too</b> at my January 2021 appointment</div><div style="text-align: left;"><br /></div><div style="text-align: left;">7- <b>At this time, I am ok with bumping up to a 3 or 4 medication combination</b> that is both pill form and clinic IV, but with stupid Covid, maybe all pill form, but ugh, my poor tummy!!!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">8- <b>I hate pain, I am NOT Brave anymore</b>, I want to feel good, I want to be able to live life while in treatment. I just want to do all the "little things" around here Jim and I worked so hard for all our lives. I'm not even asking to go horseback riding any more. But maybe one day I can groom some manes and tails? I am Sick and Tired of being Sick and Tired. I'm so over not feeling well. I cannot stand the constant FATIGUE when not on steroids. Yes, I live in La La Land :))</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Here's all my posts from the time I've reflected back on this incredible 11 year journey. Can you believe I've been writing this blog for 11 years now!</b> I need to make this into a book in case Google crashes! Ugh, scary, don't want to jinx it... </div><div style="text-align: left;"><br /></div><div style="text-align: left;">2019</div><div style="text-align: left;"><span style="color: #0000ee;"><u><a href="https://juliesmyelomamoments.blogspot.com/2019/12/i-made-it-10-years-ago-today-i-was.html" target="_blank">https://juliesmyelomamoments.blogspot.com/2019/12/i-made-it-10-years-ago-today-i-was.html</a></u></span></div><div style="text-align: left;"><span style="color: #0000ee;"><u><br /></u></span></div><div style="text-align: left;"><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2018</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html" style="background-color: white; color: #6699cc; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html</a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="arial, tahoma, helvetica, freesans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px; text-align: center;"><span face=""helvetica neue", helveticaneue, helvetica, sans-serif"><br /></span></span><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;"></span><span face="arial, tahoma, helvetica, freesans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;"></span><span face="arial, tahoma, helvetica, freesans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px; text-align: center;"><span face=""helvetica neue", helveticaneue, helvetica, sans-serif">2017</span></span><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;"> </span></div><div style="text-align: left;"><span face="arial, tahoma, helvetica, freesans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px; text-align: center;"><span face=""helvetica neue", helveticaneue, helvetica, sans-serif"><a href="https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html" style="color: #6699cc; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html</a></span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><div style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-align: center;"><div style="text-align: left;"><span face=""helvetica neue", helveticaneue, helvetica, sans-serif"><br /></span></div><div style="text-align: left;"><span face=""helvetica neue", helveticaneue, helvetica, sans-serif">2016</span></div></div><a href="https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html " target="_blank"><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="color: #6699cc;"><span style="background-color: white; font-size: 14.85px; text-align: center;">https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html</span></span><span face="arial, tahoma, helvetica, freesans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px; text-align: center;"> </span></a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2015</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html" style="background-color: white; color: #6699cc; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html</a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2014</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html" style="background-color: white; color: #6699cc; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html</a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2013</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2013/12/" target="_blank"><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="color: #33aaff;"><span style="background-color: white; font-size: 14.85px;">https://juliesmyelomamoments.blogspot.com/2013/12/</span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /></a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2012</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2012/12/" target="_blank"><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="color: #6699cc;"><span style="background-color: white; font-size: 14.85px;">https://juliesmyelomamoments.blogspot.com/2012/12/</span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /></a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2011</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2011/12/" style="background-color: white; color: #6699cc; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2011/12/</a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="background-color: white; color: #333333; font-size: 14.85px;">2010</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://juliesmyelomamoments.blogspot.com/2010/12/" style="background-color: white; color: #6699cc; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; text-decoration-line: none;" target="_blank">https://juliesmyelomamoments.blogspot.com/2010/12/</a><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /></div><div style="text-align: left;"><span face="Arial, Tahoma, Helvetica, FreeSans, sans-serif" style="color: #6699cc;"><br /></span></div><div style="text-align: left;"><br /></div><div style="text-align: left;">And soooooooooo, the crazy journey continues. I'm amazed, stunned, shocked, increduous, but ready to begin 2021 With a New Stronger Treatment Plan that will Pummel Myeloma's celluar butt! If you have successfully done a treatment I have not, <b>Please Share the Combination with Me</b>! If you have a recommendation of a particular IV, Pill-form chemo, immunotherapy, please Share with Me! I am open to all ideas EXCEPT something that involves HOSPITALIZATION. What my husband Jim went through with the home health care Hospice, was "wonderful" and peaceful, and taught me and my adult kids a lot. Hospitalization right now with stupid Covid, is very very crazy and complex and if "something went wrong", I would pass without my family there... So I'm stickin to out patient chemo and immunotherapy pills and chemo-clinic IV at this time. </div><div style="text-align: left;"><b>Hospice over Hospitalization is my new mantra :))</b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for checking in, reading and commenting about my life story. Means so very much to me! Hoping you and your family are well, happy and ready to get the heck out of 2020 and get to a better 2021! Best Wishes for health, happiness and positive things for all of us in 2021!</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-uJZVRpQ_ax4/X-xD4IsM1oI/AAAAAAAAHPU/kQQnbdrr_DIO4bAeWrWdbAG_I7wjGJQawCLcBGAsYHQ/s225/2021a.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="320" src="https://1.bp.blogspot.com/-uJZVRpQ_ax4/X-xD4IsM1oI/AAAAAAAAHPU/kQQnbdrr_DIO4bAeWrWdbAG_I7wjGJQawCLcBGAsYHQ/w320-h320/2021a.jpg" width="320" /></a></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-0RmuAmnoPdg/X-xD8S3AjVI/AAAAAAAAHPY/1bDdZjqv59MuCukMN9YLbMehFAlOTqsHwCLcBGAsYHQ/s317/2021b.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="159" data-original-width="317" height="201" src="https://1.bp.blogspot.com/-0RmuAmnoPdg/X-xD8S3AjVI/AAAAAAAAHPY/1bDdZjqv59MuCukMN9YLbMehFAlOTqsHwCLcBGAsYHQ/w400-h201/2021b.jpg" width="400" /></a></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-J3yB_5qayuY/X-xECFc5oWI/AAAAAAAAHPc/WC0uOS6roNcLYrENWZdRmUAuTtBjLKKlwCLcBGAsYHQ/s1024/2021c.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="659" data-original-width="1024" height="258" src="https://1.bp.blogspot.com/-J3yB_5qayuY/X-xECFc5oWI/AAAAAAAAHPc/WC0uOS6roNcLYrENWZdRmUAuTtBjLKKlwCLcBGAsYHQ/w400-h258/2021c.jpg" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-mjMaYCaj8x8/X-xENp9ojUI/AAAAAAAAHPo/QkqRAnA5HNo5OdPjK_HBzgyeQOMJu_0GQCLcBGAsYHQ/s1300/2021h.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="975" data-original-width="1300" height="300" src="https://1.bp.blogspot.com/-mjMaYCaj8x8/X-xENp9ojUI/AAAAAAAAHPo/QkqRAnA5HNo5OdPjK_HBzgyeQOMJu_0GQCLcBGAsYHQ/w400-h300/2021h.jpg" width="400" /></a></div><br /><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ZpEL4rTapi0/X-xESvNRXyI/AAAAAAAAHPw/i5ZjRsb0E3gFzivXmv8kgKoJrEaKPIOsQCLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-ZpEL4rTapi0/X-xESvNRXyI/AAAAAAAAHPw/i5ZjRsb0E3gFzivXmv8kgKoJrEaKPIOsQCLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com3tag:blogger.com,1999:blog-6542378222548786727.post-45551471309871124202020-12-20T21:54:00.016-07:002020-12-27T15:11:06.628-07:00Pity Party Time<p> 12.20.20</p><p>Hello Friends-</p><p>I'm so beat up. The 40mg Dex Steroids, 4days on, are really taking their toll on me. They're great the first few days, then with all the sleepless nights, then the totally yucky crash for a few days, I'm rethinking my insistance on doing this. And I also can't stand how bloated I feel and how puffy I look. And I just can't stand all the Fatigue. I feel so limited and disabled. I'll take my Myeloma status labs middle of the week, and we'll see what's really going on with Myeloma trying to win. Perhaps I will downsize to 20mg per day? Ugh I am just so over all this. I hate you Myeloma and what you have done to my life...</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-iz5l8y86ZDs/X9-4w98L6KI/AAAAAAAAHNw/tg8Rx_1lqUMjJji_G7sdNvSSvQZmpoCVwCLcBGAsYHQ/s630/20.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="630" data-original-width="630" height="320" src="https://1.bp.blogspot.com/-iz5l8y86ZDs/X9-4w98L6KI/AAAAAAAAHNw/tg8Rx_1lqUMjJji_G7sdNvSSvQZmpoCVwCLcBGAsYHQ/s320/20.jpg" /></a></div><p>It's a beautiful day out today, and I just can't drag my sorry self out there... but I will, because I have to, because it's just so beautiful out. As I write this, I look out our big kitchen window and see my horses soaking up the December sun, swishing their tails at the few remaining flies of 2020, Jim's roses and flowers still bloom brightly, the doggies run around chasing flying things and each other, and the breeze blowing thru the oak trees and our patio, wakes up Jim's collection melodic wind chimes. I just have so much to be grateful for, but honestly, I'm so weak and tired, I have residual pain points that remind all the time of my situation, and my helium, my get up and go, is just stolen. I'm grateful, but so sad.</p><p>During my awake hours I try to get things done. I feel like I have a huge boat anchor ball and chain attached to every part of me. The Fatigue is just disabling. I have a headache today. Hope that doesn't mean something. Perhaps I'm a bit dehydrated, as I'm so very tired of hydrating. Nothing really tastes good, and I find myself snacking more than I used to, just to get the metallic taste out of my mouth. Doesn't do much good tho. Some days I eat "well", some days I just don't "care". My Not eating well would be most people's "good" days, as I'm not a junk food eater, but I certainly don't get every nutrient on the food pyrimid everyday. I care, don't care, anymore. I often wonder if I am feeding, nourishing, powering my immune system, or if I'm actually empowering the myeloma cells trying to kill me. When I eat well, take the vitimins I do (B12, D3, Multi, etc), I wonder if the myeloma cells are laughing and gobbling it all up and gaining strength against me. It's just so weird to live with your body sabotaging you, and trying to kill you, every second of every day, 24 7.</p><p>Honestly I just can't wrap my head around all that has happened to me. In many ways, I so carefully planned my life, was super cautious with most everything I did, I didn't take a lot of "risks", and then I am rewarded with terminal, incurable cancer. Where the F did Myeloma come from? How did it find me? I'm always asking WHY, How Come, Why Me, Why the Torture, What Did I Do To Deserve This? I just want Peace, Serenity, Calm, Happiness, No Challenges any more, No Pain. I want to Laugh and have Fun. I want to have Energy to help myself and others. I was a helper all my life. I gave and gave and gave. I did little specifically for me. Why Life, Why, Did This Happen To Me... I know,... I'll probably Never Know the Why... </p><p>So I carry on. One labored step at a time. Sad, Angry, yet Grateful. Shocked and Amazed. Always wondering, always shaking my head that This Can't Be. This Cannot Be My Life. 11 years Fighting is a long time. 11 years taking super strong chemo meds is a long time. 11 years in continual treatment is a long time. 11 years processing having cancer and being sick, is a long time. 11 years being sick. Grateful for 11 years, But it's become so Awful, yet I am very Fortunate in so many ways. </p><p>=======</p><p>Well look at these lovely test results that just came in. From the time I started this post, I did go outside as my kids and their significant others came over to help with chores. Was super nice to be outside, and feel a bit of normalcy with them. When they left, I did too, and went to take my Monday pre-chemo status labs... I probably should not be driving as I am so weak and dizzy, but I am very careful. They always offer to drive me, but the Independent spirit in me, insists I'm ok... </p><p>So whatcha think my Dr will decide re doing Kyprolis and continuing Dex, after seeing these wonderful levels:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Uv2Z0r1NIdM/X-Amq2ibQ9I/AAAAAAAAHN4/pZVo38St1rYosvbRVCkKn-DPfaEFg-K6QCLcBGAsYHQ/s1888/1220l.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1888" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-Uv2Z0r1NIdM/X-Amq2ibQ9I/AAAAAAAAHN4/pZVo38St1rYosvbRVCkKn-DPfaEFg-K6QCLcBGAsYHQ/w229-h400/1220l.jpg" width="229" /></a></div><div style="text-align: center;">Oh Boy...</div><div style="text-align: center;">Not Good...</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-dfgPFF24rXA/X-Am8qWUKHI/AAAAAAAAHOA/Uvvc89kzKN4rUurJIakh-JmsMcglf4bjACLcBGAsYHQ/s2033/1220p.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2033" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-dfgPFF24rXA/X-Am8qWUKHI/AAAAAAAAHOA/Uvvc89kzKN4rUurJIakh-JmsMcglf4bjACLcBGAsYHQ/w213-h400/1220p.jpg" width="213" /></a></div><div style="text-align: center;">And that Platelet level</div><div style="text-align: center;">Oh Boy...</div><div style="text-align: center;"><br /></div><div style="text-align: left;">And my <b>ANC is super Low</b> too... Neutropenic Low at-</div><div style="text-align: left;"><p class="MsoNormal"><b>NEUTROPHILS, ABSOLUTE COUNT (ANC) </b><o:p></o:p></p>
<p class="MsoNormal"><b>Me = 0.85 x1000/mcL</b> (1.80 - 7.70 x1000/mcL (normal range)</p><p class="MsoNormal"><o:p></o:p></p><p class="MsoNormal">Ok, I'm done for today. So sad, so disheartened. I feel I am fighting so hard to be ok, and I am only getting worse. Is it Kyprolis not effective any more? The high dose steroids backfiring? Is Myeloma just too powerful for my weak body? Will I be able to receive treatment tomorrow? Did you see the note about the "critical WBC result". The on-call Dr called me around 10pm last night... wow, WBC of 1.0... Stay away cooties, as I'm super immune compromised... ugh... </p><p class="MsoNormal">========</p><p class="MsoNormal">Thanks for reading and caring everyone, and if I don't post again before the holidays, I hope you have a happy time with your families, whatever you are able to do, in these crazy crazy times. I'll post when I receive my Myeloma status labs, and also after my end of the month, last Dr appt of the year, Dec 29... Thank you for caring and commenting as you do, your virtual friendships mean a lot to me :))</p><p class="MsoNormal"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-BS0q05DOuOY/X-AqOW2bhtI/AAAAAAAAHOI/iKTY86r8UIsqcqwLfoFqG8QZuvB6xfKpgCLcBGAsYHQ/s2048/20h.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1817" height="400" src="https://1.bp.blogspot.com/-BS0q05DOuOY/X-AqOW2bhtI/AAAAAAAAHOI/iKTY86r8UIsqcqwLfoFqG8QZuvB6xfKpgCLcBGAsYHQ/w355-h400/20h.jpg" width="355" /></a></div></div><p style="text-align: center;">LOL LOL </p><p style="text-align: center;"><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com10tag:blogger.com,1999:blog-6542378222548786727.post-35089204105811859932020-12-15T00:17:00.018-07:002020-12-18T11:57:31.061-07:0011 Years Ago Today I Learned More NEW Vocabulary Words<p> 12.14.20</p><p>11 years ago today, December 14, 2009, was my very first Hematology, Oncology appointment. Little did I know the massive train barreling down the tracks full speed ahead towards me, would completely smash my life as I once knew it! I really thought I was just "anemic" from all the "bleeding out" I had been doing in 2008, 2009, and that I was just exhausted from working and playing so much, etc. I joked with my new Dr that I would just drink more Cranberry Juice to make "better blood" and eat more steak lol, to add in more Iron. I just couldn't fathom there was really something seriously wrong with me, as there were never any "serious" health problems in my family (except Alzheimers with my Mother at the time). Jim was shocked, speechless and teary. He just couldn't comprehend it all either. I don't think he ever fully digested what Myeloma was, and how sick really I was. I don't think many do. My outside belies the inside...</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-1_P_7a9KhB8/X9hp8Zz-8LI/AAAAAAAAHNo/GEMwXDeytu4n_eY8_UYB-Lu7hAN9U5N5QCLcBGAsYHQ/s550/1214.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="367" data-original-width="550" src="https://1.bp.blogspot.com/-1_P_7a9KhB8/X9hp8Zz-8LI/AAAAAAAAHNo/GEMwXDeytu4n_eY8_UYB-Lu7hAN9U5N5QCLcBGAsYHQ/s320/1214.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p>I wasn't actually diagnosed with Myeloma at this Dec 14, 2009 appt, but there was a lot of discussion about my <a href="https://labtestsonline.org/conditions/multiple-myeloma" target="_blank">horrible blood tests, concerns of high levels of all kinds of things in my blood tests </a>I did not understand, nor ever heard of, and serious worries and corncerns of my super low compromised immune system. I really couldn't absorb or comprehend most of what My Dr was saying. She had me do more and more labs that day, more a few days later and weekly going forward, mentioning possibly needing blood transfusions and possible hospitalization. What? I can't possibly be that "sick". I was scheduled for a <b>Bone Marrow Biopsy</b> for Dec 18. A what? I surely didn't "need" something so serious and painful like that. They must have mixed up my labs with someone else! And yes Google became my best friend, even though everyone warned against that. </p><p>All these slides represented me, but I didn't know it yet...</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-OJzaN8Rd7u8/X9he5wHz5AI/AAAAAAAAHL8/9G31CvXcHpYQMhS7g4ZqgZDzBJO1JL5wgCLcBGAsYHQ/s940/1.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-OJzaN8Rd7u8/X9he5wHz5AI/AAAAAAAAHL8/9G31CvXcHpYQMhS7g4ZqgZDzBJO1JL5wgCLcBGAsYHQ/w400-h209/1.png" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-zXP7zdGg7x4/X9hfAbfTaBI/AAAAAAAAHMA/excfGsvrduc0NrFlBTG7bN63Iqid2bpUgCLcBGAsYHQ/s940/2.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-zXP7zdGg7x4/X9hfAbfTaBI/AAAAAAAAHMA/excfGsvrduc0NrFlBTG7bN63Iqid2bpUgCLcBGAsYHQ/w400-h209/2.png" width="400" /></a></div><br /><div class="separator" style="clear: both; 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text-align: center;"><a href="https://1.bp.blogspot.com/-ZwOvqQoPgOk/X9hfu1mTeUI/AAAAAAAAHMg/JwiwUA54cNsLsSuTvcvtMCMKeOw8FiFNgCLcBGAsYHQ/s940/5.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-ZwOvqQoPgOk/X9hfu1mTeUI/AAAAAAAAHMg/JwiwUA54cNsLsSuTvcvtMCMKeOw8FiFNgCLcBGAsYHQ/w400-h209/5.png" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qOGX23ihz_U/X9hf2Q1YpPI/AAAAAAAAHMk/T-z01XYBl2kXVBYz2ehh3lzhFyfDSifUgCLcBGAsYHQ/s940/6.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-qOGX23ihz_U/X9hf2Q1YpPI/AAAAAAAAHMk/T-z01XYBl2kXVBYz2ehh3lzhFyfDSifUgCLcBGAsYHQ/w400-h209/6.png" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-_pdZYepEpAA/X9hf80IlStI/AAAAAAAAHMo/H-VJx7z4UtEle9GyElJmhZYH9h7PTyP0gCLcBGAsYHQ/s940/7.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-_pdZYepEpAA/X9hf80IlStI/AAAAAAAAHMo/H-VJx7z4UtEle9GyElJmhZYH9h7PTyP0gCLcBGAsYHQ/w400-h209/7.png" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-fIjUdg-AWlU/X9hgDQ72fBI/AAAAAAAAHMw/w0C265m8gA4CJyX7dxfnVM2z9nvplRbTQCLcBGAsYHQ/s940/8.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-fIjUdg-AWlU/X9hgDQ72fBI/AAAAAAAAHMw/w0C265m8gA4CJyX7dxfnVM2z9nvplRbTQCLcBGAsYHQ/w400-h209/8.png" width="400" /></a></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-k7R6bOYvUAw/X9hnoJOt4aI/AAAAAAAAHNc/5uKbfcsU7pUwp8WnBjcbC5mIjdHYf6ljACLcBGAsYHQ/s940/10.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="492" data-original-width="940" height="209" src="https://1.bp.blogspot.com/-k7R6bOYvUAw/X9hnoJOt4aI/AAAAAAAAHNc/5uKbfcsU7pUwp8WnBjcbC5mIjdHYf6ljACLcBGAsYHQ/w400-h209/10.png" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-SCwFWgtXwWo/X9hgIzvKZsI/AAAAAAAAHM4/F4pVNLnT0VsrvSO-u6ffGtvWY36MCWd4ACLcBGAsYHQ/s1200/9.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="630" data-original-width="1200" height="210" src="https://1.bp.blogspot.com/-SCwFWgtXwWo/X9hgIzvKZsI/AAAAAAAAHM4/F4pVNLnT0VsrvSO-u6ffGtvWY36MCWd4ACLcBGAsYHQ/w400-h210/9.jpg" width="400" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">So here I am, 11 Years, yes 11 Years later, still alive, still battling, still fighting, still shocked, still doing NON STOP treatments. I'm pretty amazed about it all, but so very very grateful to still be here to live, fight, write, and most importantly, enjoy little moments with all those I love and care about. I'm pretty lucky right? 11 years and counting!!!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Rather than rewrite all my annual thoughts and feelings for 11 years, here are all my past December 14th posts! Thank you for reading and caring about my story as you do! </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">May you be healthy and happy, and any battle you are battling, calms down, and lets you live a fulfilling and postive life. And let's hope this stupid Virus gets slapped down, and we can all get back to some semblance of normalcy, and adjust to a "new normal" where we are smarter, cleaner, safer, and healthier, but not having to live in fear all the time of getting sick from a "novel" scary virus that could do us immune compromised, with pre existing conditions, in!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><p><a href="https://juliesmyelomamoments.blogspot.com/2010/12/im-alive-one-year-today-i-was-diagnosed.html">https://juliesmyelomamoments.blogspot.com/2010/12/im-alive-one-year-today-i-was-diagnosed.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2011/12/2-years-ago-today-my-life-as-i-knew-it.html">https://juliesmyelomamoments.blogspot.com/2011/12/2-years-ago-today-my-life-as-i-knew-it.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2012/12/12-12-12-just-had-to-do-post-on-12-12.html">https://juliesmyelomamoments.blogspot.com/2012/12/12-12-12-just-had-to-do-post-on-12-12.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2013/12/current-stats-just-go-away-myeloma.html">https://juliesmyelomamoments.blogspot.com/2013/12/current-stats-just-go-away-myeloma.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2014/12/numbers-numbers-numbers-my-life-in.html">https://juliesmyelomamoments.blogspot.com/2014/12/numbers-numbers-numbers-my-life-in.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2015/12/this-day-2009-vs-this-day-2015.html">https://juliesmyelomamoments.blogspot.com/2015/12/this-day-2009-vs-this-day-2015.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2016/12/and-drama-continues.html">https://juliesmyelomamoments.blogspot.com/2016/12/and-drama-continues.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2017/12/today-8-years-ago-december-14-when-it.html">https://juliesmyelomamoments.blogspot.com/2017/12/today-8-years-ago-december-14-when-it.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-hema-what-oncol-what.html">https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-hema-what-oncol-what.html</a></p><p><a href="https://juliesmyelomamoments.blogspot.com/2019/12/december-14-2009-and-so-it-begins.html">https://juliesmyelomamoments.blogspot.com/2019/12/december-14-2009-and-so-it-begins.html</a></p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-D4oJZ93YDGE/X9hkBZp0JPI/AAAAAAAAHNQ/6B5Z4th_0Jk13aDWf_xBEPHMUAzZsVfnACLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-D4oJZ93YDGE/X9hkBZp0JPI/AAAAAAAAHNQ/6B5Z4th_0Jk13aDWf_xBEPHMUAzZsVfnACLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com3tag:blogger.com,1999:blog-6542378222548786727.post-76753216823116536262020-12-10T01:30:00.276-07:002020-12-13T14:08:38.028-07:00One Day at a Time, Just Trying to Pummel you Myeloma!<p> 12.10.20</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-NSpRA4Hi6AY/X9Ed69uTGZI/AAAAAAAAHLA/N2GnJvCnaesNUlg5gX3yFyVMh8q3xfSuwCLcBGAsYHQ/s320/049%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="309" src="https://1.bp.blogspot.com/-NSpRA4Hi6AY/X9Ed69uTGZI/AAAAAAAAHLA/N2GnJvCnaesNUlg5gX3yFyVMh8q3xfSuwCLcBGAsYHQ/s0/049%2B-%2BCopy.jpg" /></a></div><p>Hello Friends and Loyal Followers!</p><p>What a life this has become for all of us! Who knew a vicious virus could be set free and do what it has done to so many, millions, billions of people, and have the all-incompassing-impact personally and globally it has. For my life, and for most of those with all the various chonic illnesses, the immunosuppressed, immunocompromised patients out there, Corona-Covid has actually "helped" us. Everyone, everywhere is now so acutely aware of cross contamination, how germs and cooties are spread, and how no one can take their health for granted, etc, The world is so much cleaner now in many ways, for all of us continual sickies. I feel so bad for all the lost lives and all those sick and battling with the virus, but I do wish we knew the actual "underlying condition(s)", and the "what" someone passed from. It would be so helpful to know what else their body was battling that facilitated the virus to ultimately take their life. For me, I have told my adult kids, MYELOMA must be on my Death Certificate, because no matter what else attacks me, to me, ultimately Myeloma compromised me and killed me!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Ic6evazySVE/X9EmGTAqdwI/AAAAAAAAHLM/HF_sSHhlBOsVcda2KnAyAmbt0zwQrxOIQCLcBGAsYHQ/s555/8.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="370" data-original-width="555" src="https://1.bp.blogspot.com/-Ic6evazySVE/X9EmGTAqdwI/AAAAAAAAHLM/HF_sSHhlBOsVcda2KnAyAmbt0zwQrxOIQCLcBGAsYHQ/s320/8.png" width="320" /></a></div><p>I am happy to report that the High Dose Dexamethasone Steroids (40mg, 4days on) have helped me. I so wish I had done this daily back when I was suffering so much in June, July, Aug, Sept, etc, from whatever Elotuzumab-Emplicity did to my system. No way of ever knowing, well there is, but I would have to be professionally studied in research lab, to know how Elotuzumab/Emplicity morphed my system personally (as an<b> IGA Lambda type myeloma)... </b>I will always feel this treatment stimulated all the FAST growth of the "<a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">Extramedullary</a>" masses, tumors, fractures, and painful body reactions that were "quietly" there, kinda dormant and slow growing. I just can't stop thinking about all that happened to me when we changed to that treatment (Dex, Pomalyst, Emplicity). I did so well on Velcade, Cytoxan, Dex for so long. Then I became "refractory" to Velcade, and boom came the incredibly awful side effects in the summer with the new treatment, Pain like non other, continual Fever unless I continually used Tylenol, Flexeril, etc. The growth of the soft tumors outside my bones still baffles my brain! WoW! How can I have a Mass in my R side Skull/sinus area, Mass in my R side Lung, Mass in my backside Abdomen. Radiation multiple times, for multiple weeks. So amazing what the body does and can survive. I now can reflect back to the most awful 2020 summer, and see all my symptoms and side effects and understand where they came from. They were growing all along, just the summer treatment extravaganza sped up the damage up exponentially! Just incredible how much the body can handle, create cellularly, and live with! Almost 11 years officially with Myeloma, but I KNOW I was smoldering for years before that... And yes, I was "Bubble Girl" long before the Virus woke everyone up with the very basic awareness that extreme cleanliness and avaoiding cootie cross comtamination, can save our lives! Ya, Duh!! No one laughs at me now, lol... </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-38PF8jUdsm8/X9EqXZvjcwI/AAAAAAAAHLU/wP9i-C04UAcX_1W7MLGYrccnUEIJI5LBACLcBGAsYHQ/s460/18%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="345" data-original-width="460" height="300" src="https://1.bp.blogspot.com/-38PF8jUdsm8/X9EqXZvjcwI/AAAAAAAAHLU/wP9i-C04UAcX_1W7MLGYrccnUEIJI5LBACLcBGAsYHQ/w400-h300/18%2B-%2BCopy.jpg" width="400" /></a></div><br /><p>So at this time, doing the 4 days of High Dose steroids (40mg, 4days) has very nicely reduced the extreme bone and all over body pain, even when I overdo chores and crack or pull, or pinch, or damage something by mistake. Since the other day, I have had excruciating pain in R side ribs and upper chest lung area, and a bit of breathing challenges. I most likely did some damage pulling the hose around the yard, trying to do some hand watering of Jim's roses, beyond what the sprinklers do. I felt pain, and heard a little snap, crack sound, but I push on, and kept doing what I was doing. DUMB. Yes I listen to my body, but I am so "desperate" to be who I used to be... Independent and a "Do-er", I just keep on keeping on doing as it's so hard for me to be a sitting around sickie! The Dex and muscle relaxant Flexeril and Tylenol is my "magic" formula for relief. I learning it's ok to do pain relief medications, and not to just suffer. My parents raised us with the philosophy of power thru things, don't be a softy, and take very few meds. We sure didn't have pain meds in the house, and I remember suffering thru annual colds, fevers, flus, and maybe my mother gave me a low dose aspirin back then, but we never did the typical "make you feel better meds". And my Dad at 94 now, still has the same perspective. He is so well, and has very few medical issues. So amazing. But earlier in the year, he had some pinched nerves, muscle issues, etc, but he basically doesn't do any pain relief medication, no matter what I recommend or explain to him. He was "bumped" in the Costco parking lot, did go to his Dr, and did try the Methocarbamol muscle relaxant and was shocked how much it helped him lol. I am learning about my pain management everyday, and adusting everything everyday to feel ok, and hopefully pummelling myeloma at the same time. Why you wonder and ask that I don't just automatically take pain relief meds regularly? I am trying to preserve my other organs, so I can stay Alive! But after all this time, nope, not suffering anymore!! I'm learning :))</p><p>So this week was my Kyprolis break week. No IV chemo this past Mon and Tues, just the high dose Dex for 4 days. Mid to late Friday and most of all of Saturday are my so not fun crash days where I feel bloated, food tastes yucky, I spend a lot of time in bathroom for 24, 36, 48 plus hours, I'm dizzy, my brain is definitely "medication/chemo fog" mode, the Fatigue is Extreme, and the pain comes creeping back. But to me, that's a small price to pay if the high dose Dex is working. And besides, cleansing is good, right :)) </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-IICM3K0MBaM/X9EwDJYY5DI/AAAAAAAAHLc/L5bFaFaMJY0aGlOzvBZ4B4-gepChP0JLgCLcBGAsYHQ/s225/1111d%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="320" src="https://1.bp.blogspot.com/-IICM3K0MBaM/X9EwDJYY5DI/AAAAAAAAHLc/L5bFaFaMJY0aGlOzvBZ4B4-gepChP0JLgCLcBGAsYHQ/w320-h320/1111d%2B-%2BCopy.jpg" width="320" /></a></div><p>I am slowly feeling better in the R rib, chest, lung area, and can breathe more deeply. It would be so amazing to be able to see inside my body, every time I injure, reinjure something, so I know what I've done to myself. It's a beautiful day out today, so my goal is to get outside in the sun. I want to do things, and not just sit around. But I have to accept I'm Not the cowgirl I once was, my body is so fragile now, and injuring myself is just not worth trying to keep up with ranch chores. Just getting outside is a challenge because of the extreme fatigue. So crazy for who I used to be. Fatigue is so disabling. It's such a different exhaustion from being "healthy tired" from doing life. The fatigue is also from my low low low CBCs. Hoping my "forced" good eating is building my platelets, hemoglobin, red cells etc. I did not do weekly labs this past Sunday, as I knew I wasn't doing Kyprolis this week. So it will be interesting to see how my CBCs are without Kyprolis. </p><p>My next regular Dr appt is at the end of the month, so no new Myeloma status labs yet. I always can't wait to see my status, wish I could do those weekly or every other week, "just to know"! Maybe I will add the Thalidamide-Thalomide to the Kyprolis Dex mix. Maybe I will brave up and add a newer immunotherapy. Maybe I will ask to add the Cytoxan back in. Maybe try Darzalez again in a combination I didn't do before. Fortunately I do have a variety options and combinations to play with. My Dr is very research, follow the current treatment recommendations oriented and prefers to follow the studies for medication options. This is great, and I appreciate her knowledge, insights, recommendations and sticking with what is "proven" per clinical trials. But I'm more of an open-ended, bend the boundaries thinker, who wants to avoid yucky side effects at all cost. So we will see...</p><p>Just keep your fingers crossed for me that this High Dose Dex is pummelling Myeloma. If it is, I'll do it longer, but then perhaps reduce the dose at some time. I have heard from many of you, that you do low dose steroids more often than the traditional "One Day Slam". And many don't do the super strong <a href="https://www.medicinenet.com/prednisone_vs_dexamethasone/article.htm#what_are_the_differences_between_prednisone_vs_dexamethasone" target="_blank">Dexamethasone, but instead do Prednisone or Medrol</a>. I think doing steroids more often attacks the Myeloma daily. </p><p>Oh, and for those of you recommending I get a<b> "2nd opinion"</b>, and wondering why I haven't previously, I have, and I am. First of all, I like being part of a broader team of multiple Drs as I have at Kaiser, secondly I have always had a 2nd opinion with my SCT Dr team. I haven't seen my SCT Dr for quite some time now, so I contacted the SCT BMT Dept at Kaiser-City of Hope the other day, and made an appt with the "Myeloma specialist". I've seen her briefly previously, during my SCT July 2010, but haven't had a full appt with her. Looking forward to our meeting early January 2021. But really, I am happy with my current Dr and I have access to any treatment I want. It's me that's "conservative" with my choices. It's me that is not brave enough to jump from a "predictable treatment" to an unknown. It's me that doesn't want to do Clinical Trials. It's me that puts the halt on new meds. I HATE NEW SIDE EFFECTS AND I HATE THE UNKNOWN. I AM NOT BRAVE ANYMORE. I used to like "challenges", and saw new treatments as me challenging myeloma to an internal duel. Not now, I just want to feel ok.</p><p>Ok, Julie be a "patient paitient". Go outside, enjoy this beautiful life in tiny ways. Stop trying to get back to your 30s, and 40s. I always "forget" that my current "age" does factor in to everything now, all the side effects, pain, myeloma growth, injuries, etc. I have to recognize that 11+ + years with <a href="https://www.cityofhope.org/clinical-program/myeloma/myeloma-facts?gclsrc=aw.ds&&gclid=CjwKCAiAlNf-BRB_EiwA2osbxTAZk8NoiXKX__h34_r8059lwoQz2IpYLgb4Rhx9Z7wDEuRMqJAEGxoC88sQAvD_BwE" target="_blank">Myeloma</a> is a wonderful milestone, but I will never be back to who I used to be... Meanwhile, I'll just keep reading about <a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">EXTRAMEDULLARY</a>!</p><p>Pain, Pain stay away... meds meds please keep working!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Ot1XsCR8erQ/X9E0agW4QmI/AAAAAAAAHLk/uxImfh4j5o4NBaRm9B4LHUra95NxHM4ugCLcBGAsYHQ/s960/103%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="634" height="320" src="https://1.bp.blogspot.com/-Ot1XsCR8erQ/X9E0agW4QmI/AAAAAAAAHLk/uxImfh4j5o4NBaRm9B4LHUra95NxHM4ugCLcBGAsYHQ/s320/103%2B-%2BCopy.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">Look at me back in 1980, just a kid!</div><div class="separator" style="clear: both; text-align: center;">Loved Mr SkyeHorse!</div><div class="separator" style="clear: both; text-align: center;">He was a tall Polish Arabian. </div><div class="separator" style="clear: both; text-align: center;">Jim and others always wanted to trade their horses for him.</div><div class="separator" style="clear: both; text-align: center;">Nope, Never!</div><div class="separator" style="clear: both; text-align: center;">He was so loyal to me, and such a wonderful pal.</div><div class="separator" style="clear: both; text-align: center;"> He was the reason Jim and met.</div><div class="separator" style="clear: both; text-align: center;">Oh our lives, what a story it is...</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-A9gEKPnbrlc/X9E0_TY9WTI/AAAAAAAAHLs/uC0HnhZAVBYbyDIps3URbFyPXJeCVY0MACLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-A9gEKPnbrlc/X9E0_TY9WTI/AAAAAAAAHLs/uC0HnhZAVBYbyDIps3URbFyPXJeCVY0MACLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-83286855238686561252020-12-02T13:56:00.029-07:002020-12-08T23:50:15.803-07:00Treatment Options, New Myeloma Vocabulary Word = Extramedullary What? Extramedullary Who? <p> 12.2.20</p><p>Hello Friends and Myeloma Warriors. Cheers to all of us making it to December 2020!</p><div class="separator" style="clear: both; text-align: center;"><img border="0" data-original-height="1200" data-original-width="1000" height="320" src="https://1.bp.blogspot.com/-MjPe2A_qv5U/X8ful7V1IsI/AAAAAAAAHJ4/bwsPI6oV3GAhS8bZK1ChbqUdZ4vNmLinQCLcBGAsYHQ/s320/mm.png" /></div><p>I am so beat up.... Day 3 of 40mg Dex Steroids, plus Kyprolis IV Mon and Tues, and last night 2 of my little doggies woke me up around 3am to go outside, so I didn't get much sleep. Yes the Roids are taking their toll on my sleep, but I truly think this High Dose is doing some hard core good. My Dr is not happy with my perspective, as she is more "aggressive" with wanting to do (multiple) "current treatments" more than me. Most of you would probably side with her, but honestly, at this point, surviving 11 years with this Monster, I only want to feel good as many days as I can, and obvi if I do new treatments I will have new side effects, blah blah blah. I used to be ok and even look forward to what new Immunotherapies would do to my Myeloma, but not now, not after what stikn Elotuzumab did to me in the summer!</p><p>But as my Chemo Pharmacist said... "Numbers Don't Lie"... and the high dose Dex steroids and Kryprolis is doing something good, as you saw on my last post! And what's that other quote, "if it ain't broke, don't fix it" right. Meaning if this is working, why change it up... </p><p>But my Dr is worried about the high dose, <a href="http://chemocare.com/chemotherapy/drug-info/dexamethasone.aspx" target="_blank">long-term affects of Dex Steroids</a> on my bones, A1c, and body in general. But again, at this point in my battle, I say "who cares"... well not totally, as I do want more time, but heck, if I can feel good, be home, and pummel Myeloma at the same time, I'm on board. </p><p>So she also is very worried about the migration of my Myeloma from my Inside my bones to Outside, as my Scans have shown. I have since (this year) Radiated the head-skull-sinus mass, lung mass, clavicle/collarbone and rib fractures, and now we have to deal with the biggy- The Abdominal Mass. Maybe we can Radiate that annoyance too. Ugh... dang you Myeloma, stop trying to killllll me. So over being a sickie. </p><p>I learned a new Vocab word, or perhaps it was mentioned previously, and I just had so much else consuming my overworked brain, that I didn't really absorb it. My Dr and the scan and biopsy reports now term and reference my Myeloma as.... <b><a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/" target="_blank">EXTRAMEDULLARY</a></b>. Ugh, thanks Myeloma, more research, reading, understanding and deciding what to do... I just want to Swiffer, do laundry, chores, be outside in the sun and pet my horses and other critters, lol... but I am sooooo fatigued and exhausted... I do so little, even when pushing myself so much... And then I wind up fracturing something, pulling muscles, twisting nerves, etc. I hate pain, I hate challenges now. I just want simplicity and all the "feel goods". Cmon Myeloma, grant me a wish or 2 for a change!</p><p>From Google:</p><p><i><b style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 16px;">"Extramedullary</b><span face="Roboto, arial, sans-serif" style="background-color: white; color: #202124; font-size: 16px;"> multiple </span><b style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 16px;">myeloma</b><span face="Roboto, arial, sans-serif" style="background-color: white; color: #202124; font-size: 16px;"> (EMM) is an aggressive subentity of multiple </span><b style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 16px;">myeloma</b><span face="Roboto, arial, sans-serif" style="background-color: white; color: #202124; font-size: 16px;">, characterized by the ability of a subclone to thrive and grow independent of the bone marrow microenvironment, resulting in a high-risk state associated with increased proliferation, evasion of apoptosis and treatment resistance."</span></i></p><p><span style="color: #202124;"><span style="background-color: white;">Lovely, thank you Myeloma...</span></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-w3fVHvgXpv0/X8f3I5jBXgI/AAAAAAAAHKA/w2bVflip3mUfLCq5QH8Pv0FNaanTZwfOQCLcBGAsYHQ/s650/122ex%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="375" data-original-width="650" src="https://1.bp.blogspot.com/-w3fVHvgXpv0/X8f3I5jBXgI/AAAAAAAAHKA/w2bVflip3mUfLCq5QH8Pv0FNaanTZwfOQCLcBGAsYHQ/s320/122ex%2B-%2BCopy.png" width="320" /></a></div><br /><span face="Roboto, arial, sans-serif" style="color: #202124;"><span style="background-color: white;">Here's the "good news" screenshots again from my previous post:</span></span><p></p><p><span face="Roboto, arial, sans-serif" style="color: #202124;"></span></p><div class="separator" style="clear: both; text-align: center;"><span face="Roboto, arial, sans-serif" style="color: #202124;"><a href="https://1.bp.blogspot.com/-bomYT8AhMi4/X8f65w55J2I/AAAAAAAAHKQ/VD4vzmh8-20ohEzEUOu9jMU09v8pQbiNwCLcBGAsYHQ/s1892/1125i%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1892" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-bomYT8AhMi4/X8f65w55J2I/AAAAAAAAHKQ/VD4vzmh8-20ohEzEUOu9jMU09v8pQbiNwCLcBGAsYHQ/w229-h400/1125i%2B-%2BCopy.jpg" width="229" /></a></span></div><div class="separator" style="clear: both; text-align: center;"><span face="Roboto, arial, sans-serif" style="color: #202124;">IGA down 900 points!</span></div><div class="separator" style="clear: both; text-align: center;"><span face="Roboto, arial, sans-serif" style="color: #202124;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span face="Roboto, arial, sans-serif" style="color: #202124;"><a href="https://1.bp.blogspot.com/-p28n_8GMNQo/X8f7FWHtJzI/AAAAAAAAHKU/ukFdpyuioiQcBLBvi6H3cSUtvSYCezSdQCLcBGAsYHQ/s1700/1126b2%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1700" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-p28n_8GMNQo/X8f7FWHtJzI/AAAAAAAAHKU/ukFdpyuioiQcBLBvi6H3cSUtvSYCezSdQCLcBGAsYHQ/w254-h400/1126b2%2B-%2BCopy.jpg" width="254" /></a></span></div><span face="Roboto, arial, sans-serif" style="color: #202124;"><br /><div class="separator" style="clear: both; text-align: center;">Beta 2 way down!</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><i><b>Next up M Protein</b></i></div><div class="separator" style="clear: both; text-align: center;">Here's my raw numbers:</div><div class="separator" style="clear: both; text-align: center;"><b>Current (Nov 25) <span> = </span>3.79</b></div><div class="separator" style="clear: both; text-align: center;"><b>Last month (Oct 25) = 4.50 </b></div><div class="separator" style="clear: both; text-align: center;"><b>Normal = Zero lol</b></div><div class="separator" style="clear: both; text-align: center;"><b><br /></b></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-xXqYIRNJi2I/X9BzfQAGhpI/AAAAAAAAHK0/KErr6pkJegkCSvBOuk6rKwFTg5-6X3kSgCLcBGAsYHQ/s2139/25m%2B-%2BCopy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1029" data-original-width="2139" height="193" src="https://1.bp.blogspot.com/-xXqYIRNJi2I/X9BzfQAGhpI/AAAAAAAAHK0/KErr6pkJegkCSvBOuk6rKwFTg5-6X3kSgCLcBGAsYHQ/w400-h193/25m%2B-%2BCopy.jpg" width="400" /></a></div><span style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div>Ok Friends and Myeloma Warriors, what would you do in my case?</span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: left;">Stop the High Dose Roids? Get on a super powerful, multi dose chemo regimen? Which ones? Head for the Hospital for the Holidays, LOL? Stay the current course? My Dr did mention adding in the Original OLD Myeloma treatment of <a href="https://www.myeloma.org/thalomid-thalidomide" target="_blank">Thalomid-Thalidomide</a>. Remember that one, from waaaay back when? Haven't done that one yet or any of the new ones listed here: </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.myeloma.org/multiple-myeloma-drugs">https://www.myeloma.org/multiple-myeloma-drugs</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/">https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.myelomacrowd.org/">https://www.myelomacrowd.org/</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.cancer.org/cancer/multiple-myeloma/treating/chemotherapy.html">https://www.cancer.org/cancer/multiple-myeloma/treating/chemotherapy.html</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.lls.org/disease-information/myeloma/treatment">https://www.lls.org/disease-information/myeloma/treatment</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.cancer.org/cancer/multiple-myeloma/treating.html">https://www.cancer.org/cancer/multiple-myeloma/treating.html</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://www.cancer.net/cancer-types/multiple-myeloma/types-treatment">https://www.cancer.net/cancer-types/multiple-myeloma/types-treatment</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><a href="https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/">https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Can I please just get out of this. Can it all just magically go away, as I used to think it would. Can I please just do a treatment that kills Myeloma and doesn't steal what remains of my life? Not denial, just want to feel good, kill Myeloma, and go on with life... I think I'll make myself some eggs and cinnamon french toast right now :)) </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-_Fhs1c98p-o/X8lYHe5dMLI/AAAAAAAAHKg/UvBLBU99EFkUU_qp3nN8lRvMOtJ0_1H-gCLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-_Fhs1c98p-o/X8lYHe5dMLI/AAAAAAAAHKg/UvBLBU99EFkUU_qp3nN8lRvMOtJ0_1H-gCLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /><br /></div></span><p></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-39407653000745402732020-11-26T12:17:00.026-07:002020-11-30T11:24:20.319-07:00It IS a Happy Thanksgiving Today... for Me :))<p>11.26.20</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-j4D1ubNweFE/X7_59OecSeI/AAAAAAAAHJI/u33sk0hXqfsbFd2jTXF1IG03OzmVhKBsgCLcBGAsYHQ/s794/1126t%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="794" data-original-width="794" height="320" src="https://1.bp.blogspot.com/-j4D1ubNweFE/X7_59OecSeI/AAAAAAAAHJI/u33sk0hXqfsbFd2jTXF1IG03OzmVhKBsgCLcBGAsYHQ/s320/1126t%2B-%2BCopy.jpg" /></a></div><p><br /></p><p>Hello Friends,</p><p>Wishing you and your families a wonderful Thanksgiving Holiday, under the crazy Corona Covid circumstances. Hoping your day of family celebration, thankfulness, and gratefulness, brings you blessings and positivity.</p><p>With all the DRAMA I have experienced lately, I just couldn't wait for 11.30.20 to show you this amazing Myeloma marker that just came in this morning! <a href="https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/9234#:~:text=In%20multiple%20myeloma%2C%20beta%2D2,in%20urine%20below%20pH%205.5." target="_blank">Beta2Microglobulin</a> has always been a telling cancer status marker for me, and this result has just given me so much hope that "my idea" of going back retro to Jan-May 2010 Super Duper High Dose Dexamethasone Steroids of 40mg daily x 4days per week.... IS WORKING! I've only been doing this since the beginning of the month (November), and can't wait to see how this progresses this way forward, rather than all the scary multiple at a time chemo options suggested to me! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-5P5Y44KVhAc/X7_62hTVOrI/AAAAAAAAHJQ/tGTy17L5fVoKUmoVxUcweiGjZQyNQvSDQCLcBGAsYHQ/s1700/1126b2%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1700" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-5P5Y44KVhAc/X7_62hTVOrI/AAAAAAAAHJQ/tGTy17L5fVoKUmoVxUcweiGjZQyNQvSDQCLcBGAsYHQ/w254-h400/1126b2%2B-%2BCopy.jpg" width="254" /></a></div><div style="text-align: center;">Seriously! Whoohoo!</div><div style="text-align: center;">That's a Significant</div><div style="text-align: center;">DECREASE, right! :))))</div><div style="text-align: center;">Thank you Beta2 for responding!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;">I'm encouraged my tell-tale, main Myeloma status marker- the <a href="https://labtestsonline.org/tests/immunoglobulins-iga-igg-igm" target="_blank">IGA Immonoglobulin </a> level will also be reduced, based on the Beta2 result, but I am really holding my breath... Myeloma is such a tricky, smart, and constantly mutating and morphing cancer, that there are no "guarantees" that the IGA will follow in Beta2's direction... and who know's how the M Protein is reacting also...</div><div style="text-align: left;"><b><br /></b></div><div style="text-align: left;">But I will post the <b>IGA result</b>, when it comes in, regardless of the direction of the result... </div><div style="text-align: left;"><b><i>* * Whooo-hooo, result is in.... See Below!</i></b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">My Dr called me Wednesday (before I did labs, so she hadn't seen this result yet)... very worried about my recent 11.20.20 Biopsy report of my Abdominal Mass status (along with all my other Masses), and my myeloma status numbers, and she mentioned again doing the <a href="https://www.myeloma.org/multiple-myeloma-drugs" target="_blank">intense 24 7 daily hospitalized chemo regimen of multiple chemos at a time</a>... <i>In my mind I said Hellllllllllooooo to the Frkn Nooooooooo!!! </i>We will talk on Tues Dec 1, and she will have all my labs to back up my desire to continue with Super Duper High Dose Dex Steroids, Kyprolis and maybe add one more chemo! Wish me luck that my IGA is on a long term downward path, along with my M Protein...</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><div style="text-align: center;">Annnddddd.... here's the IGA result :))</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-K4Rd1dLZpS0/X8KSA82DMMI/AAAAAAAAHJg/X1GtPsXCp6I6iA27jxtUOBVZUeBrYmU8QCLcBGAsYHQ/s1892/1125i%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1892" data-original-width="1080" height="400" src="https://1.bp.blogspot.com/-K4Rd1dLZpS0/X8KSA82DMMI/AAAAAAAAHJg/X1GtPsXCp6I6iA27jxtUOBVZUeBrYmU8QCLcBGAsYHQ/w229-h400/1125i%2B-%2BCopy.jpg" width="229" /></a></div></div><div style="text-align: center;"><br /></div><div style="text-align: center;">I'm not a math star, but isn't that a </div><div style="text-align: center;">900 point differenence from last month!!!</div><div style="text-align: center;">900 points DOWN!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-JK7VqazdYy0/X8KZ8OGd85I/AAAAAAAAHJo/VovOheZx4aEZZjhChsYG7TsKsgHAj2zCACLcBGAsYHQ/s225/1111d%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" src="https://1.bp.blogspot.com/-JK7VqazdYy0/X8KZ8OGd85I/AAAAAAAAHJo/VovOheZx4aEZZjhChsYG7TsKsgHAj2zCACLcBGAsYHQ/s0/1111d%2B-%2BCopy.jpg" /></a></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-N6dCCeUcIZg/X7__J4GzPMI/AAAAAAAAHJY/QF30qhCRFE84jNRi2-YciEo5KNCsKxE8QCLcBGAsYHQ/s638/1126b%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="638" data-original-width="450" height="320" src="https://1.bp.blogspot.com/-N6dCCeUcIZg/X7__J4GzPMI/AAAAAAAAHJY/QF30qhCRFE84jNRi2-YciEo5KNCsKxE8QCLcBGAsYHQ/s320/1126b%2B-%2BCopy.jpg" /></a></div><br /><div style="text-align: left;">Thank you for reading, commenting and caring as you do! Have a wonderful family holiday! Stay away from all the Fall and Winter cooties, and if you're one of my Myeloma buddies, I hope your treatment is pummeling those sneaky cells trying to do us in!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">And I'll post again on Dec 1 after my Dr appt :)) </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-XFGc3EFJFb8/X8U3irNZy_I/AAAAAAAAHJw/S3wOJl0YyU0vXOXunF6HxWbsyTjJOOY6ACLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-XFGc3EFJFb8/X8U3irNZy_I/AAAAAAAAHJw/S3wOJl0YyU0vXOXunF6HxWbsyTjJOOY6ACLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-70000434522727824362020-11-20T22:17:00.031-07:002020-11-23T14:07:00.981-07:00Masses, Biopsies, Scans, Lots of Dex Steroids, Lots!<p> 11.20.20</p><p>Hello Friends, </p><p>Well today was "Abdominal" Liver-Kidney Mass Biopsy Day! Seems like I am chasing so many turmors, masses, fractures, high IGA and M Protein stats, low CBCs, and crazy Myeloma symptoms all the time. I'm forever trying to wrap my overly full head around how this insideous cancer just keeps morphing and evolving inside of me. So wish I could see what all this looks likes inside of me. I do see my scans, read my reports, and the Drs show me pictures of my lovely damage, but of course I don't have a "trained" medical eye, so it all looks like outerspace and alien beings to me :)) </p><p>Preceding the biopsy today, was continuing our "old school trial" of 40mg Dex steroids daily- M, T, W, Th, along with Kyprolis chemo on Mon and Tues weekly. Dex has given me new energy for 4 days, but stolen my sleep of course. After all this time on Dex, I am so used to it's roller coaster, bipolar effects. I never know what each day's reaction will be. I do eventually crash of course, sometimes more yucky than other times, and eventually I do get some solid sleep at night. I've never been a day napper, as I've always been on the go, but who knows, I might eventually accept my age and diaganois, and learn how to just "relax and snooze" whenever I want lol. Sadly, as a result of all this, FATIGUE seems to be one of my worst enemies now. FATIGUE is real, debilitating, limiting and frustrating, and different than just "being tired". Fatigue just totally drags you down, and you just don't think you can move, or do anything. It's so exhausting, and it makes me dizzy too... just wish I could get my energy back, even to a small degree, to just be "me",, well an older more damaged version of me, but me, back, would be nice.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-mCNsx-R7eXs/X7ihUplOG6I/AAAAAAAAHIw/uOLS-398oKgvmnB8pdYr4Fm_1J3JMSZGwCLcBGAsYHQ/s1440/1120%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1072" height="320" src="https://1.bp.blogspot.com/-mCNsx-R7eXs/X7ihUplOG6I/AAAAAAAAHIw/uOLS-398oKgvmnB8pdYr4Fm_1J3JMSZGwCLcBGAsYHQ/s320/1120%2B-%2BCopy.jpg" /></a></div><div style="text-align: center;">Here I am in "recovery"</div><div style="text-align: center;">after the biopsy procedure today</div><div style="text-align: center;"><br /></div><div style="text-align: left;">Yep, this is my life. Accept it Julie. Myeloma is you, and you are Myeloma. It's going to advance, change, morph and evolve all the time. But naive me, throughout the years, I really never expected it to do all the "typical cancer things" it has. I was just so darn fortunate in the beginning to have such success with treatments, and what we thought, was minimal internal and bone damage. But then, things changed. Why? Who knows? When? Who knows. But boy oh boy did things change, and how it's revved up, is just insane. I've become so accustomed to "bad news", crazy lab and scan results. I'm surprised, yet not. I expect "good news", but when I get "bad news", I shake my head, accept, as of course, what did I think would happen if I survived as long as I have. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><i>Since the summer, this is what's been "treated":</i></b></div><div style="text-align: left;"><b><i><br /></i></b></div><div style="text-align: left;">1- Head-Skull-Sinus mass, R side- Radiated in July</div><div style="text-align: left;">2- Clivas/neck, Clavical/collarbones (both sides), Rib fractures (R side)- Radiated in July</div><div style="text-align: left;">3- Lung mass, R side- Radiated earlier this month (Nov)</div><div style="text-align: left;">4- Now we're dealing with this "big" Abdominal mass- (turns out, thankfully, NOT directly in the liver or kidney</div><div style="text-align: left;">5- I probably left some areas out... will update as I remember lol</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Three masses. Masses. I have masses. Just can't get over it. And they're not little peas either. I previously posted the scan reports, and that has all the details and dimensions there. I'll have to go back and re read it, as now that I've been actually physically dealing with these aliens within me, I can connect with it more lol. I've also dealt with the clavicle and rib fractures on both sides, other tumors (L side clavicle, lower spine-sacrum), neck/clivus being eaten up by myeloma, etc. So much happened this summer. So many monsters inside of me rearing their nasty personalities all at once. Amazing what this lil body can handle... </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b><i>So here's what happened yesterday for my biopsy:</i></b></div><div style="text-align: left;"><br /></div><div style="text-align: left;">For whatever reason, I was scared in a way I am not usually "scared". Maybe because with the stupid covid corona virus pandemic panic, most all medical treatment is ALONE now. Jim and I did most everything (medically) together. I went to all his appts, and he to mine. We made little adventures and "dates" out of it, most always going to a fun lunch or dinner afterwards. Even though I am "mid life" I still feel like a kid in so many ways. Not immature, just young. So going to all these procedures of recent without Jim or my adult kids (literally being there with me), just makes realize how my body and I am in this together (alone), and I can't "rely on anyone else to "help" me. Of course my amazing adult kids, friends, family, etc, are always offering to help me, take me to appts, go with me to treatments, etc, but in this pandemic life, there's really no point, as no one is allowed in appts, procedures, etc, unless I was "disabled" and actually needed a physical caregiver to assist me. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">My son and his fiance drove me down, but of course could not stay, as the procedure and recovery was most of the day. I feel all their love and care, but I also felt "alone". Not lonely, and not "alone" in a bad way, just the reality of "aloneness". Well I was greeted by the loveliest lady, who happened to be the Nurse that called me the day before to answer all my questions. I felt an immediate feeling of relief and comfort. I had brought Jim's picture with me in my little bag, and showed her. Briefly told her my recent insane life story. She teared up a bit and gave me a hug, even though we should not have per the virus lol. Kaiser just takes such amazing care of me. I am so fortunate to have this Insurance and access to the facilities and incredible professional staff I do. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I was set up in a hospital type area, although this was just an outpatient day procedure. I wasn't scared or nervous any more. IV was run, heart monitor, blood pressure cuff, oxygen monitoring, etc., all the typical body stat monitors. Soon I was moved to the procedure room, which had an open CT scan and other machines. The Dr of the day and more Nurses attended to me, and let me know what was going to be happening, step by step. Me of course, "chatty counselor", and still feeling the affects of the week's Dex, asked a lot of questions, etc. The staff was great, and described everything to me, etc. The surprising twist, was that this mass was actually "Abdominal", and fortunately NOT directly inflitrated into my Kidney or Liver, but kinda floating around in my back R side Abdomen area, kinda above or a little attached to the Adrenal glad. This was "good news". </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I had to lay on my stomach, which I haven't had the "luxury" of doing for quite some time, with all my bone damage, rib, clavical fractures, and bone damage/pain in general. But I was able to maneuver myself with their help and did ok. They scanned me again, prepped me, and used an Ultrasound machine to locate this stikn mass for the needle biopsy. I had mentioned to them, that I'm "not Brave" anymore, and did not want to feel pain, thinking of course, of all the awful Bone Marrow Biopsies I've had over the years. They used Lidocaine for the pain block of the needle going in, but I actually didn't need anything else. That had a weird feeling at first of course, and they had given me advance warning of the feeling, but all was ok. I am braver than I think or want to be, and I do have a high pain tolerance. Just don't want to anymore lol. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">So long story short (are my long stories ever short lol), it turns out this Mass was a bit different and evolved than orginally seen on the previous scan. The Dr was great, narrating and talking me thru the whole procedure. He asked the techs for additional size needles for additional biopsy samples. I heard him use the word "Necrosis", "Necrotic" several times. He also mentioned to the staff, that he wasn't getting the samples he wanted. He indicated he usually only takes a few, but in my case, took 10-12. And he kept commenting on the how the nature of the mass had "changed". He seemed to be indicating something positive... </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Later when he visited me in Recovery, he gave me additional details. I told him I wouldn't "hold" him to anything he was "guestimating", as of course we had to wait for the detailed biopsy report, but he seemed to feel positivity towards the "Necrotic, Necrosis" status of the samples. We talked about my HIGH dose Dex steroid regimen, and being on Kyprolis, and he was optimistic that "maybe" it was "doing some good" and actually "killing" the cancer cells!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">A bit later, an xray tech came in with a mobile machine and took a bedside chest xray, as they wanted to make sure the needles did not puncture or penatrate my lungs. So much Anatomy and Physiology to know! During the procedure, the Dr was very careful to direct my breathing as he did the needle sampling. He mentioned something about my lung moving around in that area, and needing to be very cautious. So much I don't know! I was monitored for several hours, and actually felt ok. It was very quiet in the Recovery area, and not many patients. I felt very safe there. Today I am bit sore in the biopsy area, and my neck too, but nothing bad at all!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Did I mention, this Mass is "huge". I asked if it was tennis ball size, he said perhaps "softball" size! Wow!</div><div style="text-align: left;"><br /></div><div style="text-align: left;">So my "take away" from this is hopeful. Hoping High Dose Dex Steroids and Kyprolis is doing some killing inside of me! I continue to be awed by how much I have experienced, continue to go thru and experience. I am forever and ever grateful and appreciative for all the amazing humans in my life that are working to heal me and facilitate a longer life for me. Kaiser staff is always amazed at my (now) 11 year Myeloma survival. I am awed and indebted to all the medical professionals that have worked so hard to keep me alive! </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/6dxb-ty_LaA" width="320" youtube-src-id="6dxb-ty_LaA"></iframe></div><br /><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7xFStrt1VEk/X7ll2ydaK8I/AAAAAAAAHI4/sz3iva4pMeQWVJkvWBmTDLlaCrEiStSRwCLcBGAsYHQ/s960/20c%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-7xFStrt1VEk/X7ll2ydaK8I/AAAAAAAAHI4/sz3iva4pMeQWVJkvWBmTDLlaCrEiStSRwCLcBGAsYHQ/s320/20c%2B-%2BCopy.jpg" /></a></div><div style="text-align: center;">Forgot to mention </div><div style="text-align: center;">that one of the stipulations of the Biopsy procedure</div><div style="text-align: center;">was a Covid test. </div><div style="text-align: center;">Did it a few days before, and of course Negative.</div><div style="text-align: center;">I told the Nurse of my Skull, Sinus mass, and to please be VERY careful</div><div style="text-align: center;">with the probe, and he said he wouldn't even go up high,</div><div style="text-align: center;">but just swab my nose cavity a lot. </div><div style="text-align: center;">Such amazing care by these wonderful medical professionals!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;">So much more detail to add all the time, but I'll leave it here, and let you know the results of the Biopsy when I know. I'm exhausted, but feeling ok. My point of pain reference will always be this summer's madness, and I am so very very grateful that all that horrific pain has mostly dissipated, I am feeling better overall, more hopeful, and thinking my current treatment might actually be telling Myeloma off. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Thank you for checking in, caring, offering your advice and heart felt comments. If you are a Myeloma warrior, please always let me know your status, treatments, and how you are doing. I appreciate all of you as my virtual friends and support network. Fight on! We can do this! </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-GCcJNyv8GzM/X7lnpIz48mI/AAAAAAAAHJA/UAUE9xtN7KYq--UwKYUvdXw-kVbjasT_ACLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-GCcJNyv8GzM/X7lnpIz48mI/AAAAAAAAHJA/UAUE9xtN7KYq--UwKYUvdXw-kVbjasT_ACLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><p><br /></p>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com2tag:blogger.com,1999:blog-6542378222548786727.post-26492491045502503982020-11-10T01:00:00.265-07:002020-12-28T23:53:19.256-07:00Challenges Challenges, Radiation Radiation, Chemo Chemo, Pain, Limitations... Hate you Myeloma!<p> 11.10.20</p><p>Hello Friends, </p><p>So much going on, and I will try to make this short LOL, as my details are so detailed, and you're probably tired of hearing of all my pain and suffering commentary...</p><p>My whole life is Myeloma, chemo lab treatments, radiation treatments, side effects, side effects, side effects, home pain treatments, me treating my symptoms 24 7, not feeling well all day long, most all days feeling "sick" all the time, trying not injure myself more than I already am, forcing myself to eat and drink, living in the bathroom with lovely diarrhea many times during the day, then "tortured" when looking out my windows, feeling so sad the life Jim and I created, I am missing out on, that I should Not be missing out on... And the FATIGUE, omg, the FATIGUE... takes my breath away...</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-soXxjg2awdE/X6obum9HA4I/AAAAAAAAHIM/VfBm0HCqarsIEEXVPgOQue8gHHJJ76-EwCLcBGAsYHQ/s268/10w%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="268" src="https://1.bp.blogspot.com/-soXxjg2awdE/X6obum9HA4I/AAAAAAAAHIM/VfBm0HCqarsIEEXVPgOQue8gHHJJ76-EwCLcBGAsYHQ/s0/10w%2B-%2BCopy.jpg" /></a></div><p>We all know the quotes and memes about us not being our cancer diagnosis, cancer not being us, not letting it be our identity, not letting cancer take over our lives, etc. Yes, for many, this all may be true and possible, but it's not for me and most myeloma patients. In my beginning, no one really understood the INCURRABLE, TERMINAL diagnosis status of myeloma, even though I explained it all the time, and wrote about it all the time. I was also "judged" on how I "looked so good", and how I continued to try and work a few hours a week, and on my good days, tried to engage in life. Early on myeloma was eating me up from the inside out, and we really didn't know the extent of it, even though I did have scans, xrays, skeletal scans, etc., and I did have "weird physical, body feelings" I tried to suppress and ignore. I did Not have continual pain, only intermitant, so I didn't have the "typical" myeloma red flags. I was very careful with what I did, took few physical chances, always very clean and sanitary waaaaaay before Corona Covid, so I didn't have a lot of dramatic Dr appts, etc... Myeloma was very silently eating me up, and I just didn't know it...</p><p>But over the years, pain began to dominate my non-steroid days. Any little cough, sneeze, bend, fall, lifting, awkward position of leaning over, etc, tweeked something terribly. At first I just got mad at myeself for doing too much, and for still trying to live my pre-myeloma life. Then I realized, accepted how my body was weakening, and sabotaging me more each day. I never could, and still can't, really differentiate or tell the difference between muscle, nerve, bone pain. But it was Zometa (2018) and Elotuzumab (2020) that for whatever reason, super stimulated the horrific pain, crazy side effects and severe bone damage, tumors, masses, etc. (I've mentioned this so many times, so I won't go on and here about it again). But the extent of RAPID tumor and mass growth, sudden fractures, etc, has really brought the reality of this cruel disease to the forefront of my life. Myeloma is me, and I am Myeloma. I can't pretend I am ok, and live a pretend, "normal" life... I can't be the positivity memes that I am Not Cancer, and Cancer is Not me... we are One, and I cannot deny it. Ouch, just did a little cough, and I probably cracked another rib! Oh well, more Radiation tomorrow and the rest of the week.</p><p>But I just don't understand how myeloma can bring me down so fast now. I was so treatment responsive, and rather "healthy" with successful treatments, even as recent as earlier this year. Being the deep thinker I am, I'm always incredulous of my situation. How could this once super strong gal, be so incredibly sick now. How could my biochemistry sabotage me as it did, does! Since I didn't have a lot of the typical alarming bone breaks and bone pain, and I still had a "functional" life a few days a week, how could I be so sick on the inside! I was so fortunate over the years, that the treatments I did eventually WORKED, to bring my numbers down, at least for many months, often for over a year, if I was "lucky". My Drs treated me with the most up to date immunotherapies, and chemo regimens, etc. I had access to any med, any treatment regimens out there. Sure I had yucky side effects 4 to 5 days of the week, but I had a few good days each week too. Now, sadly, little helps. Hardly a good day ever. I hurt all the time. Chemo, immunotherapy is not working. I have too many tumors, lesions, masses, etc, that "there's too much to radiate now", my kind Radiology Oncologist says. Myeloma is angry and more powerful., which of course makes sense, 11 years later (prob even more years, with smoldering MM 2009 prior!) So hard to wrap my head around all this, but pain and fatigue is the ultimate reminder 24 7... </p><p><b><u><i>Sorry for the rant, now to the facts...</i></u></b></p><p><b>Take daily 40mg Dex steroids</b> for a total of 160mg per week now. Feels good in the beginning, then the yucky crash comes on. Didn't have the yucky during initial treatment Jan 2010 - June 2010.</p><p><b>Began Radiation</b> for my R side clavicle, collarbone fractures, R side rib fractures, and for the R side Lung mass today for the entire week. </p><p><b>Continued the 40mg Dex steroids</b> (4 days on, 4 days off) also. Hoping pummeling myeloma with 160mg roids per week, for several weeks will help, like it did back in 2010. My Dr is concerned doing this amount, but seriously, in my current status Why Not!</p><p><b>Pain </b>is less than the EXTREME, debilitating pain I had in June, July, Aug, Sept, etc. but always there. I cannot believe everything I continued to do and accomplish back then, while suffering so much. The "universe" let me be there for Jim...</p><p><b>Pain</b> is slowly lessening with steroids and radiation, but I am so much smarter now about how I take pain meds, Flexeril muscle relaxant, steroids, etc. I am also much smarter about not trying to "force" myself to do household, ranch chores when I really shouldn't be bending, lifting, twisting, moving, etc... My amazing adult kids and friends come daily to help with things, and I am learning to just let things go, well, to an extent, but really not that much. Jim and I were always such "do-ers"... so hard to not "do"...</p><div style="text-align: left;">Hurts when I breathe</div><div style="text-align: left;">Hurts when I move</div><div style="text-align: left;">Hurts when I turn</div><div style="text-align: left;">Hurts when I use most every part of my dysfunctional body</div><div style="text-align: left;">Hurts just being me, and who I used to be</div><div style="text-align: left;">So wish I could do ranch chores like I did before</div><div style="text-align: left;">Sadly all the past "fun" animal interactions, are just challenging chores now</div><div style="text-align: left;">Hurts when I adjust sitting, trying to relax, trying to sleep</div><div style="text-align: left;">I feel the crazy L side clavicle, collarbone tumor "clunking" always, even though it was radiated for a week. Pokes into my neck, so crazy</div><div style="text-align: left;">My front and back neck hurts, could that be from radiation or more bone damage</div><div style="text-align: left;">Hurts when I spend time (lots of time) on the toilet with diarrhea several times a day</div><div style="text-align: left;">So much sitting I never did before</div><div style="text-align: left;">Food is a challenge, not much tastes good anymore, and I always have GI issues, hello Imodium</div><div style="text-align: left;">Sick of hydrating, always thirsty</div><div style="text-align: left;">So tired of water</div><div style="text-align: left;">Gag reflex more prominent now</div><div style="text-align: left;">Have to remember to take little baby sips</div><div style="text-align: left;">Body is trying to shut down, but I won't let it</div><div style="text-align: left;">Steroids help me so much, in so many ways</div><div style="text-align: left;">Yes, the crash is awful, but the hours I get relief before the crash is worth it</div><div style="text-align: left;"><br /></div><div style="text-align: left;">My CBC lab results are not good</div><div style="text-align: left;">Liver function a little higher each time</div><div style="text-align: left;">WBC always low</div><div style="text-align: left;">RBC always low now</div><div style="text-align: left;">RDW always high now</div><div style="text-align: left;">Platelets low</div><div style="text-align: left;">ANC low</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><b>Radiation-</b> all this week for my R side collarbone, ribs, lung mass</div><div style="text-align: left;"><b>Kyprolis IV immunotherapy chemo- </b>Mon and Tues </div><div style="text-align: left;"><b>Continue High dose steroids-</b> 40mg, 4 days on, 4 days off, for a total of 1600 weekly</div><div style="text-align: left;"><b>Covid test</b> prior to Biopsy</div><div style="text-align: left;"><b>Biopsy- </b>R side Liver-Kidney mass Friday Nov 20</div><div style="text-align: left;"><b>Bone Marrow Biopsy- </b>to stage Myeloma, and see if another cancer has joined the party...</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-QVghM7fcwBo/X6ozKCE0-cI/AAAAAAAAHIU/97iPPvsMlQ4WCwd9usO9nuZPG0i9EsB3gCLcBGAsYHQ/s2048/10r%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2013" height="320" src="https://1.bp.blogspot.com/-QVghM7fcwBo/X6ozKCE0-cI/AAAAAAAAHIU/97iPPvsMlQ4WCwd9usO9nuZPG0i9EsB3gCLcBGAsYHQ/s320/10r%2B-%2BCopy.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-novPwvzLhsc/X6ozZ0ywd8I/AAAAAAAAHIY/amAuoOUlkcAxZzg4dzRfouCengG1IAe9QCLcBGAsYHQ/s2048/10k%2B-%2BCopy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-novPwvzLhsc/X6ozZ0ywd8I/AAAAAAAAHIY/amAuoOUlkcAxZzg4dzRfouCengG1IAe9QCLcBGAsYHQ/s320/10k%2B-%2BCopy.jpg" /></a></div><br /><div style="text-align: left;">Yes, myeloma, you have stolen my life. I am you, and you are me. Many can deny this, but I cannot. My whole life and daily activities are centered around dealing with myeloma, trying not to hurt more, or suffer more, or have GI emergencies. Ugh, the GI emergencies, so scary, yet so funny. Most everything I do, is "forced". Yes I always find joy in all that surrounds me. I do have so much that is wonderful surrounding me. I am very fortunate to have all the loving people and animals who want and need me still alive. Yes I am still incredibly grateful for all that I can still experience in light of all the pain, treatments and side effects. Every night, when I take the little doggies out, I look to the Universe, and ask, cry "WHY, why me"? </div><div style="text-align: left;"><br /></div><div style="text-align: left;">I am "owned" by you Myeloma, and I cannot deny it... and I will never understand or know the "why"... until....</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Ya_2v8NSxRE/X6ozfvFMUuI/AAAAAAAAHIg/AUJWY1eDtXcaG_qE19oVawdQ97xyhKhzgCLcBGAsYHQ/s320/17%2B-%2BCopy.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" src="https://1.bp.blogspot.com/-Ya_2v8NSxRE/X6ozfvFMUuI/AAAAAAAAHIg/AUJWY1eDtXcaG_qE19oVawdQ97xyhKhzgCLcBGAsYHQ/s0/17%2B-%2BCopy.png" /></a></div><br /><div style="text-align: left;"><br /></div>Juliehttp://www.blogger.com/profile/08773473100504931050noreply@blogger.com6