Time for Real Acceptance

 2.21.21

Hello Friends and Followers- 

Word of the day, week, month for me: Acceptance.

 

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.

Thank you for reading and caring as you do :))

Someone Get Me Out of this Nightmare... Daymare... Make That ... Cancermare...

 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....

https://www.myeloma.org/types-of-myeloma

https://www.cityofhope.org

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

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...

Darzalex IGA vs IGG

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"...

Jim loved this Movie and Song

News Coming 2.11.21

Hi Friends-

Dr appt today, and crazy test results... more to come on  2.11.21

Tim Magraw

"Live Like You Were Dying:...

Another take on I Will survive 

Gloria Gaynor and the Alien

Just like me and the Alien growing in my tummy :((

 

 

Just Eat Me Up Alive Myeloma

2.1.21

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. 

https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/

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!

Remember this classic!

"I Will Survive"

Thank you Gloria!

I am trying so hard to Survive...

Chemo, Radiation, Labs, Radiation, Myeloma Raging

1.28.21

So much going on...

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... 

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. 

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. 

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....  

IGA

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...

Thanks for reading and caring as you do... more to come... So many "adventures" in Julie's Myelomaland... 

Something Amazing Happened Today :))

 1.21.21

Thank you Zarxio/Neupogen and of course 3 days of Dex Steroids... something Totally Amazing Happened Today 1.21.21 :))

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!!!

But until I do all that, here's a hint of the Amazing 1.21.21 story I made it to!!

Beautiful day, beautiful couple. Thank you Universe for giving me life, energy, and medication to be able to do this :)) 

The Body Sabotage Continues Non Stop, Go Away Myeloma

 1.11.21

Hello Friends and Loyal Followers. 

Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.

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... 

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. 

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:

Beta2

WOW... 10.8 for Beta2?

Wonder if that's a world record yet?

Total Protein

And 12 for Total Protein, 

Never had anything like that before 

and actually never paid much attention to this value

as it was always in the "normal" range. 

                                                          IGA

OMG up up and away we go :((

Never been this High before...

M Protein below

Yikes!

It's never been this High :((

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 new combo of Ninlaro, Darzalez, Dex does. 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. 

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 :((

Time to build up those lovely Platelets and supportive blood.

Myeloma, you're just too smart and know just how to sabotage me.

So when my IGA and M Protein status comes in, I will screenshot that for you.

I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. Yep, and there they are above, super High :((

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, in case I don't have any more options, 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 No Hope, Zero Hope, 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...

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.

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... 

I will continue this post as more results or chemo changes come in. So please continue to check back. 

UPDATE- 1.13.21

Chemo regimen change - 

Bye bye Ninlaro pills 

Hello Velcade shots again

Hello again to IV Darzalex

Hello again to Pomalyst pills

And of course Dex Steroid pills

Will do 5 days of Zarxio-Neupogen to raise low WBC

Will do a bag of Platelets, and 

2 bags of Blood

Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish 

Thank you for reading and caring as you do. 

You help make my life feel valuable :)) 

Hello to Posting on the 1's - And The New Treatment Plan Revealed!

1.1.2021     January 1, 2021     1.1.21                                                        

Happy Happy 2021 Friends and Loyal Followers! It's Good Bye and Good Riddance to drama filled 2020!

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 :))

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! 

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!

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. 

And the plan is.... Xpovio/Selinexor...

 Nope that was changed as of 1.4.21  LOL

Paired with our fave Dex Steroids, possibly paired with Darzalex, and or Ninlaro, and or Pomalyst, and or all of them together LOL! 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. 

 

Pomalyst, been there, done that before, caused very low CBCs

but has good success previously

Nope, that was changed on 1.4.21

Darzalez... Yes!! Began 1.5.21

Been there, done that, and with good success

until the study protocols recommended going from weekly to 

every 2 weeks, then to monthly. My stikn "high risk"Myeloma requires

continual treatment, no matter the recommendation of the clinical trials.

New to me, and in the Velcade class of meds

Yes, this was prescribed to me along with the Darzalex! 

Will take 1st pill after Darza infusion 1.6.21

Read too many possible side effects of Nausea vomiting

so I don't want to do that after my first Darza infusion 1.5.21

and possibly not make Day 2 on 1.6.21

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.

Here's the link to all the FDA approved Myeloma drugs we discussed:

https://www.myeloma.org/multiple-myeloma-drugs 

Here's the link for Xpovio Selinexor:

https://www.myeloma.org/xpovio-selinexor 

And ironically, on one of the Selinexor links, there's study-trial of how it may fight Covid 19 also!

https://nortonhealthcare.com/news/selinexor-covid-19-trial/

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. 

Any of you out there that have done the combo of of any of these? 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. 

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 :((

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... 

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!

Out With 2020, In With 2021 with New Choices and Decisions To Make

 12.30.20

Hello Friends and Loyal Readers-

"HAPPY" (haha!) 11 YEAR MYELOMA DIAGNOSIS ANNIVERSARY TO ME 

TODAY, DECEMBER 30!!!

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!

On this day, 11 years ago, I was diagnosed with Multiple (WTF) Myeloma. 

11 years ago, December 30, 2009, I was diagnosed with INCURABLE MYELOMA CANCER. 

11 years ago changed my life forever, but on that day, I could not possibly comprehend or understand what was ahead of me. 

I heard the word CANCER and knew what that meant. But I sure did not know ANYTHING about Myeloma, Multiple (Who?) Myeloma. 

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...

11 years ago, December 30, 2009, I was diagnosed with Myeloma. Multiple (OMG) Myeloma. 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!

UNBELIEVABLE RIGHT!!!

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. Thank you so very much to all the Donor Angels out there, saving our lives, One Bag at a Time!

11 years ago 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... 

Well, here's my most recent Lab stats, they're not happy news and kinda scary!

Was wishing this blood sample had 

better news... 

Myeloma is smart, and mutates Fast and Furiously

when we become "Refractory" to the treatments we are on.

So on to the next level of treatment...

Better Brave Up Julie!

IGA is my telltale status marker

Yikes! Almost 13x the HIGH end of Normal!

As they say... "Numbers Don't Lie"...

How can the Beta2 increase like this in only several days? 

Well I did reduce the 40mg Dex Steroids to 20mg for a week...

This week I'll do 20mg Mon, 40mg Tues, 20mg Wed, 40mg Thurs. 

Just can't stand how poofy and bloated I am now :((

Ahahhaaaa!!! Me :)) 

Here I am, receiving 2 bags of donor blood-

Never thought I would do that, but I sure 

Thank the Donors for their Kindness and Selflessness!

Everyone in healthcare are amazing soldiers, warriors and life savers!

I always "bring" Jim with me,

have his picture in his car and mine always

and also a pictorial "shrine" to him in the kitchen.

He is always with me, and I feel his presence everywhere

in our house and property

Amazing what cancer patients go thru,

and so Amazing what the body can tolerate!

How can someone eles's blood co-mingle with mine,

and my body is totally ok with it! 

Can we just drain my Myeloma contaminated blood,

and replace it completely with some healthy blood :))

So what did my Dr and I discuss... 

Well a lot, and know she feels bad for me, as she knows Quality of Life is Most Important to me 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...

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- 

Here's the list of all the meds I have done since January 2010. Several of these I have done several times in different combinations with each other. 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. 

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.) So insane I am living with 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. 

THE BEEN THERE, DONE THIS LIST:

Dexamethasone Steroids @ 20mg or 40mg, always paired with these-

Revlimid

Cytoxan IV prior to SCT

Melphalan IV with SCT

Revlimid maintenance

Revlimid

Kyprolis

Pomalyst

Velcade

Darzalex

Cytoxan (IV for SCT 2010, pill form for treatment Sept 2019 to May 2020)

Elotuzumab Emplicity

Revlimd

Velcade

Kyprolis

Next up??? Great list here of treatment options...

Had Radiation in 2018, for a week+:

Sacrum tumor, Skull, Ribs, Clavicle, collarbone tumor and several fractures 

Had Radiation in 2020, 2 weeks+:

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

Became "Extramedulary" in 2020

Add in:

Acyclovir daily to prevent Shingles

Omeprazole for Steroid stomach issues

Benadryl to prevent reactions and for sleep

Flexeril to help calm and untangel all the nerves and muscles caught in all the tumors, fractures and masses

Vitimins- B12, D3, C, Magnesium, Women's Alive, Tylenol, Opioids (that I don't use as they don't do much for me, so why use those and damage my body more!

.81 Aspirin, depending on the treatment and chance of DVT

And more I am probably forgetting

So what am I going to do, going forward... 

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 City of Hope, so I have access to any medication, treatment, drug, clinical trial, etc, I want. Again, I am the one putting the brakes on many suggestions, because I AM NOT BRAVE WHEN IT COMES TO YUCKY SIDE EFFECTS! 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!

We discussed combinations of these, some I have done before, others new to me:

Thalidomide (very old school, and one of the 1st Myeloma treatments)

Cytoxan pills

Kyprolis IV

Ninlaro - Ixazomib pills

Sarclisa- Isatuximab

Darzalex

Xpovio- Selinexor

Blenrep- Belantamab

You can see all these on the IMF frontline treatments, FDA approved medications

And on the MMRF site for treatments

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:

1- I can deal with Lower GI side effects, but not Upper GI side effects and I know several of the newer meds are puking meds...

2- 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, 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.

3- At this time, I do not want to be Hospitalized for another Stem Cell Transplant, 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...

4- At this time, I do not want to be Hospitalized for the CAR T transplant, 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..

5- I will wait to see what my Dr says after consulting with the Myeloma specialist at City of Hope

6- I will consult with her too at my January 2021 appointment

7- At this time, I am ok with bumping up to a 3 or 4 medication combination that is both pill form and clinic IV, but with stupid Covid, maybe all pill form, but ugh, my poor tummy!!!

8- I hate pain, I am NOT Brave anymore, 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 :))

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! I need to make this into a book in case Google crashes! Ugh, scary, don't want to jinx it... 

2019

https://juliesmyelomamoments.blogspot.com/2019/12/i-made-it-10-years-ago-today-i-was.html

2018
https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html

2017 

https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html

2016

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html 

2015
https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

2014
https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

2013
https://juliesmyelomamoments.blogspot.com/2013/12/

2012
https://juliesmyelomamoments.blogspot.com/2012/12/

2011
https://juliesmyelomamoments.blogspot.com/2011/12/

2010
https://juliesmyelomamoments.blogspot.com/2010/12/

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, Please Share the Combination with Me! 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. 

Hospice over Hospitalization is my new mantra :))

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!