Everyone keeps asking how I am doing, so I guess it’s time for an explanation. For some reason, I haven’t wanted to speak publicly about what I’m going through, it’s kind of confusing and disorienting and all happening too quickly. So in case you're interested, here is the long version of an answer . . .
I thought I was doing well on monthly Darzalex immunotherapy maintenance – my M-spike has been pretty much flatlined at 0.1 for the past nine months, so I assumed I was at remission. Wrong! I sort of wondered why I wasn’t feeling as well as I should, with that kind of number, but was holding off having an MRI done until the one-year anniversary of the last one in late October, despite a pain in my shoulder.
The pain produced some badly swollen glands under the arm, so I spent an entire month getting this diagnosed: three ultrasounds, a mammogram (not breast cancer!), a needle biopsy (ouch) and then a PET scan. What was determined from all this was that it was plasmacytomas which had invaded the lymph nodes. Those are cancerous tumors which form from the myeloma cells. The PET scan revealed that they are also in various other places on my body as well. Which is why I’ve been so tired.
I need to have a specialist answer for me WHY this happened when my numbers were so good. I guess the myeloma can get busy behind the scenes and shape-shift to such a degree that it no longer puts out the protein which is what they measure your disease progression with (M-spike).
So in one month I’ve gone from thinking I was at remission and feeling pretty good about that, to having this thing sort of taking over my entire life again.
So . . . what we are doing . . .
I’m set to begin a 14 treatment course of radiation next Monday. I went for the setup today. They can’t get me started any sooner. Then after that, and probably even while it’s going on, I will start Dr. Chen’s recommended treatment of a four-drug combination which has cured several of his other myeloma patients of plasmacytomas. He is most confident it will work and wants me started on it ASAP. I always like to delay the taking of drugs, but can really feel the need for it; if something isn’t done, and quickly, I will no longer be around (and quickly). So time is of the essence. So per his request may even start while still on the second week of radiation, even though it will involve a 25 mile drive down a crowded freeway and back, on top of the half hour journey to the radiation clinic in the opposite direction. It’ll only be one day, as it’s a once a week treatment. Oh, and before that, I need to have a port surgically implanted in my chest. That is a device, sort of like a pacemaker, that they use to more easily give you IV infusions. This is a several hour surgical procedure, and will also happen on a radiation day.
So I call this the summer of no fun for me. My friends are in places like Alaska and Iceland, and my summer outings are to the overcrowded chemo room and radiation machine. Oh well, let me not lapse into feeling sorry for myself and try to find the blessings in each day, no matter how small. You don't need to be on top of a mountain or viewing amazing scenery to feel God's presence. When I need inspiration, I read scripture or look to the daily offering from Pastor Steve Garnaas-Holmes' Unfolding Light poems. He has a way of getting to the heart of what's real and what matters.
So please pray for me to weather and get through this fifth major crisis since diagnosis. I got through the other four and lived to tell the tale, but somehow this seems qualitatively different. My system feels weaker from all the previous treatments. (And part of me even possibly suspects at times that this could be from all the drugs themselves, which can cause secondary cancers.) But that is just conjecture, nobody knows what makes myeloma resurface or become aggressive. I like to blame myself for this, that or the other . . . “If only I’d eaten this way, or taken that supplement . . .” But it really doesn’t matter at this point, as it’s all hands on deck to deal with what’s going on and I can think about it later.
Thank you for your concern, love, and prayers for healing, it means a lot to know you all care.