Challenges Challenges, Radiation Radiation, Chemo Chemo, Pain, Limitations... Hate you Myeloma!

 11.10.20

Hello Friends, 

So much going on, and I will try to make this short LOL, as my details are so detailed, and you're probably tired of hearing of all my pain and suffering commentary...

My whole life is Myeloma, chemo lab treatments, radiation treatments, side effects, side effects, side effects, home pain treatments, me treating my symptoms 24 7, not feeling well all day long, most all days feeling "sick" all the time, trying not injure myself more than I already am, forcing myself to eat and drink, living in the bathroom with lovely diarrhea many times during the day, then "tortured" when looking out my windows, feeling so sad the life Jim and I created, I am missing out on, that I should Not be missing out on... And the FATIGUE, omg, the FATIGUE... takes my breath away...

We all know the quotes and memes about us not being our cancer diagnosis, cancer not being us, not letting it be our identity, not letting cancer take over our lives, etc. Yes, for many, this all may be true and possible, but it's not for me and most myeloma patients. In my beginning, no one really understood the INCURRABLE, TERMINAL diagnosis status of myeloma, even though I explained it all the time, and wrote about it all the time. I was also "judged" on how I "looked so good", and how I continued to try and work a few hours a week, and on my good days, tried to engage in life. Early on myeloma was eating me up from the inside out, and we really didn't know the extent of it, even though I did have scans, xrays, skeletal scans, etc., and I did have "weird physical, body feelings" I tried to suppress and ignore. I did Not have continual pain, only intermitant, so I didn't have the "typical" myeloma red flags. I was very careful with what I did, took few physical chances, always very clean and sanitary waaaaaay before Corona Covid, so I didn't have a lot of dramatic Dr appts, etc... Myeloma was very silently eating me up, and I just didn't know it...

But over the years, pain began to dominate my non-steroid days. Any little cough, sneeze, bend, fall, lifting, awkward position of leaning over, etc, tweeked something terribly. At first I just got mad at myeself for doing too much, and for still trying to live my pre-myeloma life. Then I realized, accepted how my body was weakening, and sabotaging me more each day. I never could, and still can't, really differentiate or tell the difference between muscle, nerve, bone pain. But it was Zometa (2018) and Elotuzumab (2020) that for whatever reason, super stimulated the horrific pain, crazy side effects and severe bone damage, tumors, masses, etc. (I've mentioned this so many times, so I won't go on and here about it again). But the extent of RAPID tumor and mass growth, sudden fractures, etc, has really brought the reality of this cruel disease to the forefront of my life. Myeloma is me, and I am Myeloma. I can't pretend I am ok, and live a pretend, "normal" life... I can't be the positivity memes that I am Not Cancer, and Cancer is Not me... we are One, and I cannot deny it. Ouch, just did a little cough, and I probably cracked another rib! Oh well, more Radiation tomorrow and the rest of the week.

But I just don't understand how myeloma can bring me down so fast now. I was so treatment responsive, and rather "healthy" with successful treatments, even as recent as earlier this year. Being the deep thinker I am, I'm always incredulous of my situation. How could this once super strong gal, be so incredibly sick now. How could my biochemistry sabotage me as it did, does! Since I didn't have a lot of  the typical alarming bone breaks and bone pain, and I still had a "functional" life a few days a week, how could I be so sick on the inside! I was so fortunate over the years, that the treatments I did eventually WORKED, to bring my numbers down, at least for many months, often for over a year, if I was "lucky". My Drs treated me with the most up to date immunotherapies, and chemo regimens, etc. I had access to any med, any treatment regimens out there. Sure I had yucky side effects 4 to 5 days of the week, but I had a few good days each week too. Now, sadly, little helps. Hardly a good day ever. I hurt all the time. Chemo, immunotherapy is not working. I have too many tumors, lesions, masses, etc, that "there's too much to radiate now", my kind Radiology Oncologist says. Myeloma is angry and more powerful., which of course makes sense, 11 years later (prob even more years, with smoldering MM 2009 prior!) So hard to wrap my head around all this, but pain and fatigue is the ultimate reminder 24 7... 

Sorry for the rant, now to the facts...

Take daily 40mg Dex steroids for a total of 160mg per week now. Feels good in the beginning, then the yucky crash comes on. Didn't have the yucky during initial treatment Jan 2010 - June 2010.

Began Radiation for my R side clavicle, collarbone fractures, R side rib fractures, and for the R side Lung mass today for the entire week. 

Continued the 40mg Dex steroids (4 days on, 4 days off) also. Hoping pummeling myeloma with 160mg roids per week, for several weeks will help, like it did back in 2010. My Dr is concerned doing this amount, but seriously, in my current status Why Not!

Pain is less than the EXTREME, debilitating pain I had in June, July, Aug, Sept, etc. but always there. I cannot believe everything I continued to do and accomplish back then, while suffering so much. The "universe" let me be there for Jim...

Pain is slowly lessening with steroids and radiation, but I am so much smarter now about how I take pain meds, Flexeril muscle relaxant, steroids, etc. I am also much smarter about not trying to "force" myself to do household, ranch chores when I really shouldn't be bending, lifting, twisting, moving, etc... My amazing adult kids and friends come daily to help with things, and I am learning to just let things go, well, to an extent, but really not that much. Jim and I were always such "do-ers"... so hard to not "do"...

Hurts when I breathe

Hurts when I move

Hurts when I turn

Hurts when I use most every part of my dysfunctional body

Hurts just being me, and who I used to be

So wish I could do ranch chores like I did before

Sadly all the past "fun" animal interactions, are just challenging chores now

Hurts when I adjust sitting, trying to relax, trying to sleep

I feel the crazy L side clavicle, collarbone tumor "clunking" always, even though it was radiated for a week. Pokes into my neck, so crazy

My front and back neck hurts, could that be from radiation or more bone damage

Hurts when I spend time (lots of time) on the toilet with diarrhea several times a day

So much sitting I never did before

Food is a challenge, not much tastes good anymore, and I always have GI issues, hello Imodium

Sick of hydrating, always thirsty

So tired of water

Gag reflex more prominent now

Have to remember to take little baby sips

Body is trying to shut down, but I won't let it

Steroids help me so much, in so many ways

Yes, the crash is awful, but the hours I get relief before the crash is worth it

My CBC lab results are not good

Liver function a little higher each time

WBC always low

RBC always low now

RDW always high now

Platelets low

ANC low

Radiation- all this week for my R side collarbone, ribs, lung mass

Kyprolis IV immunotherapy chemo- Mon and Tues 

Continue High dose steroids- 40mg, 4 days on, 4 days off, for a total of 1600 weekly

Covid test prior to Biopsy

Biopsy- R side Liver-Kidney mass Friday Nov 20

Bone Marrow Biopsy- to stage Myeloma, and see if another cancer has joined the party...

Yes, myeloma, you have stolen my life. I am you, and you are me. Many can deny this, but I cannot. My whole life and daily activities are centered around dealing with myeloma, trying not to hurt more, or suffer more, or have GI emergencies. Ugh, the GI emergencies, so scary, yet so funny. Most everything I do, is "forced". Yes I always find joy in all that surrounds me. I do have so much that is wonderful surrounding me. I am very fortunate to have all the loving people and animals who want and need me still alive. Yes I am still incredibly grateful for all that I can still experience in light of all the pain, treatments and side effects. Every night, when I take the little doggies out, I look to the Universe, and ask, cry "WHY, why me"? 

I am "owned" by you Myeloma, and I cannot deny it... and I will never understand or know the "why"... until....