I ended Tuesday’s heartfelt, personal post this way:
“But tomorrow I would like to share how I feel about my new, perpetual life on chemotherapy. How I’m not recovering as quickly as I did before my SCT. And why I am gong to call my new maintenance therapy “RVD light!” Because that’s all it is–the same pounding which has left me feeling off balance and dragging over the past six months.
But I’m here, I’m alive and the therapy is working! Sure glad I don’t have to pay for it! Maybe I can touch on that a bit tomorrow, too…”
How do I feel–both emotionally and physically–about my “lifetime sentence” using RVD “light” or some other type of chemotherapy?
First of all, it helps to be experienced. I have become accustomed to being poked and prodded and stuck. I understand the ups and downs of living a “new normal” life.
And it helps that I cover this stuff for a living…
That said, it still affects me emotionally and psychologically–well informed or not.
I had hoped that my auto SCT would give me several years of drug free remission. I literally mourned the loss of that time when my SCT didn’t take me there.
But the point is, I did mourn it. And I’ve moved on.
The hard part for me is that I don’t recover as quickly as I did before, even eleven months post SCT. Three weeks of no Velcade or Revlimid, and I was just starting to feel better on Monday–the day I started another six week RVD cycle.
Such is the hand I/we as myeloma patients have been dealt. I’m alive and able to write. My bone damage from before I was diagnosed still exists. Has Aredia and Zometa helped? Maybe so. No fractures since then.
I’m as active as I can be. I had hard bones to start with. That’s why I always get bone marrow biopsies (BMTs) sedated. Bisphosphonates may have helped my bones heal a bit. But if I don’t stick to my strict, low carb diet, my ribs on the right side feel the pressure from water retention around my middle. It hurts!
My right hip is arthritic and mangled–and needs to be replaced. I’m guessing that the damage is partially from myeloma damage on my right side (Why always on my right side?) which probably put stress on the hip from walking out of balance for a number of years.
If I wasn’t on oxycodone and Gabapentin (neurontin) for my peripheral neuropathy, I bet I couldn’t walk.
Do I get my hip replaced? While on RVD light and blood thinners? I have been using warfarin since I had a pulmonary embolism shortly after my diagnosis, caused by early radiation, dexamethasone and Revlimid therapy. At this point, probably not.
I still have four or five compression fractures in my lumbar vertebrae. My T-12 is gone. Yes, it hurts big time to get out of bed at night to go to the bathroom. It hurts even more to roll out of bed in the morning.
SO WHAT? I am constantly aware and reminded how good I have it, compared to many of my myeloma friends and readers. Thanks for the kind words and for helping keep me grounded over the years.
Thank God my kidneys are in great shape! Pattie is the administrative assistant at a large dialysis clinic north of Tampa. Trust me; you don’t want to go on dialysis unless you absolutely need to!
How fortunate most of us are to not have to pay for all of this stuff! I have several myeloma friends who aren’t able to get the therapy they need because Medicare or their insurance won’t pay for the experimental treatment that they need.
Their struggle has inspired me to write a book about ways multiple myeloma patients can find much needed help paying for what is becoming a lifetime of constant treatment.
Because there can be a downside to turning a cancer like multiple myeloma into a chronic disease: Finding a way to pay for ongoing, perpetual therapy.
I’m writing this on Tuesday. It’s a dex day. Awesome! I am getting lots done. I feel pretty good. Good enough to work in the yard a while. Carefully, of course!
Would others skip it? Hire someone to help? I bet a lot would. But for me it feels good to move. And it helps keeps my mind off my “life sentence.”
That would be my number one teaching point: Find some meaningful work to do and get up and do it–even if it hurts.
For active recreation, have you tried exercising in the pool? I love the way I can stretch-out as I take long, deliberate strokes in the warm water. We keep our pool around 90 degrees!
And just peddling my legs while using one of those brightly colored floatation “noodles” doesn’t seem to hurt my hip. I should do a post about how and why we spend so much time in the pool…
Enough about me. Believe it or not, I’m uncomfortable writing about all of this. But if it helps others know that it’s OK to admit that living with multiple myeloma is hard, it’s worth it!
I will talk more about my treatment plan and numbers sometime soon. In the meantime, try to feel good and keep smiling! Pat
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