I want my friends and readers to know that I’m OK. Really! Yes, my remission seems to have been short-lived. And yes, my bone marrow isn’t currently able to produce enough white blood cells and platelets to keep me safe. I feel that it’s important for me to share my feelings about what I’m going through honestly and unfiltered.
But this isn’t more serious than the medical hiccups many of you endure day-in and day-out. And that’s my point. It is important to me that my fellow myeloma patients and caregivers understand that they are not alone–that feeling anxious–or even depressed–is all part of our new normal.
But I’m usually able to bounce-back quickly. Your kind words and suggestions help so much!
I have learned over the years that Living with Multiple Myeloma is like riding a roller coaster. Ups and downs, with way too many thrills and chills. That’s why I don’t like to ride roller coasters any more. I have more than enough drama in my life.
Check-out what I wrote about my BMB report yesterday:
My bone marrow is a wasteland! I couldn’t shake the image of knocking on by my bones and hearing a hollow echo. Or gazing across a vast desert, with only a few cactus and some scrub brush growing along the horizon…
It’s called cellularity. And at only 15%, my bone marrow is not active enough to overcome the constant assault by ongoing maintenance chemotherapy and still fight-off infections.
But as long as I don’t come down with a serious infection, I should be fine. I realize that. And many of you have helped remind me that this is simply another sudden dip on my multiple myeloma driven roller coaster ride.
That said, I have also received dozens of questions about why Dr. Alsina has chosen to do what we are planning to do. Let me try and answer some of those questions now.
1) Since your bone marrow is myeloma free, why change anything? Isn’t your doctor overreacting? No. because all we are doing is going back to the dosing schedule that I was taking when I achieved remission in the first place. Dr. Alsina recommended going back to a four weeks on and two weeks off Velcade cycle, replacing the four weeks on/four off schedule we had adopted in what I called “RVD light.” And I will be taking 20 mg of dexamethasone the evening after my sub-q Velcade injection. Dr. Alsina believes we need to hit my awakening myeloma hard and keep it in bed sleeping, under the covers. Hard for me to argue with that–especially since my new treatment regimen isn’t much tougher to take than RVD light.
2) Are you planning to re-test? Yes. My medical oncologist runs a SPEP each month. Last month my M-spike was still zero. But Florida Cancer Research’s lab has proven to be less sensitive than the in-house lab at Moffitt. It will be interesting to see what that test shows next month. I won’t re-test at Moffitt until just before Christmas.
3) Should I be seeking a second opinion? Not now. Not enough has changed–and my treatment regimen is basically the same. When the time comes to make a significant change in my treatment regimen, I will ask the opinions of several myeloma specialists that I know. Those of you that are concerned we may be overreacting can take comfort in this middle of the road approach, right?
4) How am I doing? How do I feel? I meant what I wrote at the beginning of the post. I’m OK! But I will be writing about the underlying anxiety riding a real-life roller coaster can cause. The unexpected experience has jolted me back to reality. It reminds me that my “I’m going to at least another ten year plan.” isn’t going to be easy! Physically, I don’t feel much different, although I can tell when my ANC count is way down. I get tired more easily. And of course I cramp more and my peripheral neuropathy worsens the more drugs I take.
I will be writing more about the emotional side of this latest “dip” on my ride soon. For now, ASH news is breaking and I need to focus on the research and technical side of myeloma again for a few weeks. I’ll be flying to Atlanta to cover the meetings in less than a month.
Feel good and keep smiling! Pat
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