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!
4.8 - Hospital Arrival- 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 :)) Scott had to take me in and out, in a wheelchair. How sad is that. Pallative delivered one here a few weeks ago :((
4.9 - Hospital all night long, came home in the late morning exhausted. No Sleep. Wonderful Nurses, just too much monitoring all the time, but I understand why.
4.9 - Home,Shower, sleep, super weak legs, problems from that, etc. Taking Zarxio to raise WBC.
4.11 - Pallative Home Health Nursing Team cameand 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 :((
LOL Hospital blanket, not Spa robe lol
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
4.12.21 UPDATE:
- Dr appt on Wed (4.14) for my eye status (side effect from Blenrep and Low Red Cells). Monthly meeting with my regular Dr.
- Since being on Blenrep, 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.
- Blurry vision, especially Left eye, but that could be from the low Red Blood too
- Grew another weird Right side soft Hematoma tumor out of no where, fast, between my Collarbone and Neck. Has gone down a lot thankfully!
- Grew some weird black and blue bump, lump on my inside Right side, inside my mouth, cheek. Mostly gone, thankfully!
- Have become more weak 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.
THANK YOU SO MUCH EVERYONE FOR ALL YOUR CARDS, CALLS, MESSAGES, ETC. 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...
Nala Hanna Jack
Kristin
Scott
Alissa
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...
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"...
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!!!!
My daughter and I were in Hospital together, 33 years ago!
Today, a totally different story. Stupid Myeloma
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!!!!
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?
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!
OMG, can all this be REAL??? Come join me in ER, let's make it a PARTY... (Steroids talking)
Happy Birthday to Alissa today, Scott on March 25 and wife Ashley on March 4. Thank goodness I made these landmarks!!!
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 :))
Alissa, "ok Mom, time to go "Party with your Platelets!"
Just wrote my Dr about all the things happening to me. Don't even know if I wrote it all here previously...
4.6.21 ER Dr called last night 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.
Platelets 15 or 16, Used to be in the 100s. Hemoglobulin super low too, forget level... will look up... Other Labs not good...
Today, 4.7.21 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.. Spot 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...
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. 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...
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.
4.7.21 Charge Nurse just called. 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???
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.
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...
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...
Later on Thursday night, APRIL 1, I had two CRAZY things happen.
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...
So I suffer at home,...
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...
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???
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 :((
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...
Just had to update all of you, as I feel and look awful and seriously cannot believe what is happening to me :((((
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:
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!
Happy Spring, Happy Easter 2021
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.
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.
IGA
Ha! Maybe this is my Joke on me LOL... > > >
Here's my other labs:
BETA2 MICROGLOBULIN
UNBELIVABLE !
Never had Light Chain issues before.
This is insane!
REALLY??!!!
NEVER HAD PLATELET ISSUES
IN ALL MY YEARS OF MYELOMA!
SERIOUSLY!
LOOK AT THE M PROTEIN.
WHEN I WAS DIAGNOSED I WAS
AROUND 4.5
Normal is Zero!
=================================================
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...
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!
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).
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...
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.
Platelets!
This was bag 2, almost done.
Blood last week
2 bags
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.
AND OMG, I FORGOT TO MENTION THE "BIGGEST" PART OF ALL OF THIS... I STOPPED DARZALEX AND POMALYST AND BEGAN BLENREP LAST WEEK. 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.
Lovely selfie lol
I was really tired and achy,
and also didn't fluff my hair much.
Funny how my Nurses always ask how I am,
and know by how I look. I tease them that one day
I will come in right out of best and scare the heck out of them :)))
Well it's taken me all day sporadically to write this, so I have to quit and sit and watch "Heartland" 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 :)))))
Here are some links to random things and shows I've been watching lately, if i'm not asleep or in the bathroom LOL
Walmart grocery pick 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.
I'm always looking up medical info 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
Always on the Myeloma sites, keeping up with research and new FDA approved meds:
So much has happened this week, so exhausted and beat up. Will update ASAP...
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
Have so much to say, but zero energy to say it... here's the plan for this week:
Dr appt Tuesday
High Dose Steroids before (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.
Before that, Labs for Blood Typing for Platelets and Blood- 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.
Dr appt to dicuss Blenrep start day, 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...
Wednesday, Blood, Platelets, 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...
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...
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...
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...
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-
3.11.21 (but written on 3.9.21) as I will be crashing bad on 3.11.21...
And I found this the other day...
ME!!!!!
So here's the UPDATE I would be posting on 3.11.2021:
1- Darzalex IV Monday March 8. 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!
2- Dr appt/planning/discussion and Velcade Injection today, Tuesday March 9.
3- Both days, with 20mg Dex Steroids and Pomalyst.
4- Discussed both Blenrep and Melflufen or stay the coursewith Darzalex, Velcade, Pomalyst, Dex steroids. 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????
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.
Thanks for reading and caring as you do, and offering medication suggestions and heartfelt comments as you do. Means so much to me :)) x0x0
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"...
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.
Fun Show!
Will never celebrate with Jim and others again
He loved a good steak, I was never a regular meat eater
But we had a lot fun times at lovely restaurants...
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.
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...
Did my Ophthmology appt last week, and my eyes are good, and ready to be destroyed by Blenrep.
Ironically a blog follower mentioned "melphalan flufenamide (Pepaxto; melflufen)" . 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:
"Notably, the combination also showed activity in a subset of patients who had extramedullary disease (EMD; 41%). "
Thank goodness for the BRAVE people that do these Trials!!!
Well isn't this an amazing twist... will ask my Dr about Blenrep vs Melflufen!!
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 Neutropenic 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...
LOL hadn't read this before just finding it to post!
I eat almost all the banished foods here LOL
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...
Acceptance can be a simple word and concept, or very powerful.
Acceptance...
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?
No.
Thought I did, but I really didn't on a deep to the core,... This Is Actually Happening To Me, level.
Sadly, it took this awful Extramedullary ABDOMINAL Mass (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. Myeloma is Incurable, and just bounces back. Just a matter of time for each individual. (There is NO cure, 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.
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.
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?"
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.
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.
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.
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".
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.
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.
Beta2
I'm 9x higher than the Normal range of 1.0 - 1.8
LOL...
IGA too High to even measure
> = beyond what the testing machine can register
PS- yes I will speak to my Dr about Blenrep 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
And now I will drag myself to Kaiser for weekly Labs, and hopefully be able to sit outside in the sun when I return.
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 :))
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 "typical "chromosonal mutations" 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....
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... Extramedulary. 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),,,
PLEASE READ THIS LITTLE "DISCLAIMER":
If you are NOT COMFORTABLE thinking or talking about "death", please stop here,.....
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:
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.
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.
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", but I just didn't have the physical symptoms to make it REAL as I do now. 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.
=============================
Ok, "safe" to read now...
1- We then chatted about my medication options, and I opted (as pisses everyone off), to remain as we are, one more month on Darzalex, Velcade, Pomalyst, Dex Steroids, 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 Blenrep, 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...
Ok I will in March, if this current regimen doesn't work...
2- My WBCs, Platelets, Reds, Whites, etc are super super low, so she scheduled me for a blood transfusion 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 :))
3- My Dr also gave me a RX for Zarxio Neupogen 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...).
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...
Here's my bag 1 or 2 of blood
Thank you Amazing Donors!!
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...
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...
Thank you for reading and caring as you do... time to go shoot up Zarxio:))
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"...
Hello February! I made it another month. 2.1.21 pretty cool date right.
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
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.
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.
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...
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!
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!!!
Can you find my Abdominal "Alien" Mass? Look for the Softball size circle with the measurement:
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...
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.
ANY RECOMMENDATIONS my Myeloma Buddies??
Thanks for reading and caring as you do, and I hope you have a great February, without any Drama!
Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.
Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.
Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!
Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!
January - June 2010
My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.
I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.
Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!
Chemical Warfare...
January 2010 - May 2010: My initial chemo regimen:
June 2010: High dose IV Cytoxan chemo Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?
Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiplemyeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.
Bone and calcium problems
Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)
Infections
Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.
Kidney problems
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.
