That is a very good web page from the International Myeloma Foundation explaining the disorder, if you’d like to understand a little more about it. It will help to decipher the meaning behind some of the terms I will use.
Today I am writing on my iPad while I relax in my recliner and listen to “Soundscapes” play softly in the background. I woke feeling nauseous and achy in sharp contrast to yesterday when I felt really good all day. I would prefer to write at my computer, but this will have to do. I have exciting news and don’t want to wait any longer to share it.
I am about halfway through my second 21-day cycle of chemo. In addition to my daily oral med, Revlimid, I had two Velcade injections this week as well as my monthly IV of Zometa. On Friday I saw Dr. Joudeh. He is always upbeat and I look forward to our appointments. When he came into the exam room, there was a smile behind his mask as he told me he had good news to share. “Very good news. Almost too good, which is very good.”
I wasn’t quite sure what to think as he patted the cushioned stool that sat near the cabinets and invited me to sit near him at his computer so he could cover my lab results.
“As you can see here, when we first diagnosed you, your IgA marker was 1567. Now, after a full cycle of your RVD regimen and part of another, it has dropped to 800. Your kappa light number is nearly in normal range. The chemo is working, and you are tolerating it well. This is very good.”
For the sake of reference and to illustrate how good that number is, I am including a screen shot of my original lab results showing the normal range for the IgA heavy protein chain of 87-352.
What does this mean? I hoped perhaps it might mean I would not have to have as many cycles of chemo, and it actually might mean one fewer than first anticipated, but Dr. Joudeh told me I would still probably need three to four more. It will still be sometime this spring before I will be ready for the BMT (bone marrow transplant). I felt some elation nonetheless that the treatment is working and working quite well.
At each of the last two or three visits, Dr. Joudeh has asked me if I had thought about where I wanted to go for the transplant. I was still in the process of learning what I could about my options when my sister contacted me about speaking to my niece’s brother-in-law, Hunter, who is a physician at OU Health in Oklahoma City and who is himself a lymphoma survivor. She told me he and his brother, my niece’s husband, Luke, who is also a doctor, had discussed my situation recently at dinner together and wondered if I had considered the OU Health Stephenson Cancer Center. “You should call him and talk to him about it,” she told me.
So I reached out to Hunter in an email, and he responded with some very encouraging information about the new state-of-the-art facilities and the BMT unit complete with a gymnasium and ceiling-to-floor glass walls with beautiful views from the spacious patient rooms. He had trained with many of the physicians there and would confidently choose any of them for his own care in the event his cancer returned. But the most appealing factor is that it’s located in my hometown of Oklahoma City near my dad, who is 84 and no longer travels out of state, as well as my sister and her family and many old and dear friends — a built-in support group, if you will, who are not only lifting me up in prayer every day but would be close at hand to hopefully visit while I’m there. Of course, the specter of COVID-19 and its restrictions linger still, and who knows what impact they will have by the time I am ready for the transplant. No matter. My decision was made.
Now the only hurdle is getting approval from the insurance company.
Yes, things are moving right along. Praise God!
Here is a short video of my beautiful Christmas tree.
Thank you! My labs from last week showed the IgA had dropped again — to 691! Helps keep me positive.
Kelly, So good to read another post and so thankful that there is so much improvement and that the outlook seems to be looking good. It's truly amazing to me how our God works out details in our lives like the path to OKC for a BMT. Yes, Praise God! I wish you a Merry Christmas and a super positive 2021 my old friend!