10.20.20
Hello Friends and loyal readers.
I certainly do not have a "boring" life. Myeloma just keeps on, keeping on, relentlessly. Is this really my life? I still can't digest and accept what goes on with me on a daily basis, even though I am 11 years into this crazy ride.
My heart is so sad, my mind is processing 24 7, Jim's loss to all of us. But he is at rest and at peace now. Going through his medical decline with him became a window to my future in many ways. Experiencing his Alzheimer's decline, his mind and body decline, his journey from an extremely independent, extraordinarily competent man in all ways, to being trapped in a body that betrayed him, was on several levels, a telescope into my future. We will not leave the earth in the "same way", but experiences and lessons learned daily from his journey, solidified so many things for me, regarding how Myeloma can, will and Will Not take me down. Simply put, if you still have your "mind", no matter how "sick" your body becomes, you still have "choices". Choices eventually were completely stolen from Jim, and I became his "mind". Yet even close to his passing, there were still expressions of preferences, but not with the ability to control the outcome. I am so glad we were here as a family for him, helping to guide his way, and lovingly "read" his needs, and fully be there for him on every level. No doubt, it's very very hard, and very very challenging for all caregivers involved. But frustrations aside, it's a huge, incredible responsibility to "fully" care, mentally and physically, for another adult who cannot care for themself. It's really a huge responsibility, especially when done with love and care. Myeloma, you won't take me out this way... you hear me Myeloma... oh no you won't...
Jim with his beloved ranch chore assistants,
Doing what they loved most, side by side, everyday...
Now that we are half way through October, I continually reflect back on how much was going on with me personally, all the while caring for Jim (with of course wonderful help from our adult kids and professional caregivers). Fortunately in 2019, the combination of Velcade, Cytoxan, Dex steroids allowed me to function relatively well, so I could be there for Jim, the animals, our life etc. But when things changed in late May, June, July, August 2020, due to my horrendous reaction to Elotuzumab, I just can't believe everything I pushed myself to do, even though I was so so "sick" and in pain beyond pain. Honestly, when I couldn't get rid of the fever, had a difficult time catching my breath, and my collarbone, shoulder, neck, head pain was so awful, and my CBC labs continued to decline, while the myeloma labs continued to climb, I really thought I would "go" before Jim. Fortunately weekly high dose Dex steroids, and my formula of Tylenol, Flexeril, low dose steroids and an inhaler, "saved my life". If I listed all the things I continued to do most days, you just wouldn't believe it. I can't, looking back... Elotuzumab, for whatever reason, you totally sabotaged my body, myeloma loved you, and grew tumors, awakened lesions and fractures, and created or awakened "masses" that were dormant, or not as big. I just can't get over what happened to me during that time...
So here's what's going on now:
I began Kyprolis last week, as we determined Velcade had run it's course and could no longer beat up myeloma, beating me up. But wait, not only did I begin Kyprolis, my Dr determined I needed a blood transfusion, as my Red CBCs were "dangerously low". so 2 bags needed! What??!! I didn't even need blood during my stem cell transplant in 2010, just one bag of Platelets. Well, this news "scared" me, that I was so "bad", but also because the unknown source and "cleanliness" of the donated blood was very worrisome to me. Don't get me wrong, I deeply appreciate the Donors, but I still fear any new treatment going into my body. But I pushed my fears aside, and trusted the screening process and my medical "advisors", and allowed someone's healthy blood in to assist my sick blood. My Dr and Nurse did tell me about an alternative injection, Epotin (Procrit, Epogen) , but when I read the side effects, and "possible risk of tumor progression" in blood cancers... I came to my senses and accepted the donor blood. Well only one bag, because of course complicating this double infusion day, was our "last visit" with Jim at the mortuary, for the final ID and loving good-byes... (but that's another story)... and I just didn't have time for 2 bags that day. Fortunately, I did ok on the 2 day Kyprolis infusion, and other than a large bruise, hematoma where the blood transfusion was, no side effects, thank goodness, to either.
Hello donor blood-
Thank you donors for saving our lives!
Wow, medical science always amazes me,
and what a body can tolerate, is mind boggling!
In my veins, and making me stronger temporarily.
Blood, then Kyprolis
amazing what the body can handle!
So all that was last week Mon and Tues. Did labs on Sunday, and sadly my Red CBCs weren't all that different. Yes I should have done the 2 bags, but with the timing of Jim's last viewing, I just didn't have time for the 2nd bag, plus I wanted to see how I did before accepting 2 bags of donor blood.
Also showing from my Sunday labs, my White CBCs (WBC) were so low at 1.4, that I received an early morning call yesterday from my chemo pharmacist, that they were CANCELING my Kyprolis infusions for Monday and Tuesday, and he and my Dr want me to do 3 days of Zarxio (Neupogen) again, to bring up my WBC. Here we go again. body sabotage again. Most likely the myeloma eating me up, and enjoying my new blood, and maybe the Revlimid yanking down my WBC. I remember it did that years ago, when I was on Revlimid for years. Hello again to an even more compromised immune system. Hello bubble life forever. Thank goodness I have a beautiful little ranch to quarantine in, as I've done forever... Corona/Covid, you got nothin on me. Used to this crazy life of cooties out to get me.
Hello Zarxio injections to bring up my super low WBC
Self injection to my belly-jelly, no problem.
Expert here now lol
And so it goes for me, on and on and on go the challenges. Thank you Dex steroids for giving me a lift once a week. And thank goodness the awful, horrible pain I experienced in the summer, has lessened to the point, that I have actually gone days or so without any Tylenol or muscle relaxants! Whoohoo, I think the remnants of Elotuzumab is finally getting out of my system.
And finally... Radiation begins this Saturday for 2 weeks. Hopefully this detailed zapping of both clavicles, specifically the Left side collarbone tumor now bumping into my throat will shrink, as well as shrinking, killing the lung "mass", as well as welding back together the Right side clavicle, collarbone fracture, as well as the Right side rib fracture(s), and other assorted areas I can't wrap my head around! Seriously, can you believe all this. Oh, and lest I forget, a full body Pet Scan later on Saturday too. Have to remember to fast for the glucose contrast injection. I think I'll just go horseback riding and forget all of this. How's that sound ;)) Ooopps, can't forget to do labs on Wednesday to see how the Zarxio has (hopefully) increased my WBC enough, so I can resume Kyprolis on Thursday and Friday.
So that's just a tiny portion of my life. The medical side that is. If I gave you a run down of all the tasks and events I have to keep up... it would make your head spin, like mine always is. Can't forget to order hay for the horses, feed the almost hibernating tortoise, then worms and clean water for the inside turtle, feed all the doggies, and kitty care, birdie care, clean the house, laundry, don't forget to eat and take my chemo and related pills, and it's tax bill time too, and process everything related to Jim, make sure to keep supplies ordered for our household, hydrate, eat, swiffer, vacuum, water the plants not on sprinklers, have the horse vet over for our senior horses with issues, paperwork, paperwork, paperwork, etc etc etc... calls and more calls, texts, emails, business stuff, etc etc, and that's just a tiny representation... Normal stuff for a "normal" person, but with all my tumor and fracture limitations, plus constant fatigue from chemo and myeloma, each task is a challenge right now. And to think how much Jim did when he was well and I was working. We were an amazing team...
We all have a complicated story, challenges and life demands. We all have our mountains to climb, and I never forget all the beauty and good things to be grateful for daily... One foot in front of the other, I always tell myself. As long as everyone has food, water, love, and health care, it will be ok. And yes, I do have wonderful help from my adult kids, and others. But ultimately, it all circles back to me, to be in charge of it all, while I can.
Thank you for checking in, caring as you do, and following my story... tell me yours too!
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