The plan we have been anxiously awaiting has finally been clarified today. The test results are all in and the results are what we expected: significant cancer involvement. The interesting thing is that the tests we have previously relied upon (bone marrow biopsy, M-protein level, free lite chain levels in the urine) are actually not telling an accurate story right now. These tests are showing that he has very little cancer involvement...which isn't true. So, what has happened? The cancer has changed to "non-secreting" (this sounds better than it is). The cancer has essentially left his bone marrow and is now almost totally manifested in the form of plasmacytomas (it was found in his bone marrow, but very little). This means that now we need to rely on the test that does tell us the story of what's happening: The PET scan.
The PET scan shows multiple plasmacytomas--they are really all over. Some we can see when we look at his skin (they look like round, raised bruises), but the scan shows that there are some tumors in the muscles and bones that we cannot see. We expected this, and this was not a shock to us. We already knew that this cancer was back and we already knew we needed more treatment.
We received some great news that the neuro-axis radiation was very effective and there is no evidence of myeloma cells in the cerebro-spinal fluid or brain meninges. This is actually good news on two levels because continued brain involvement would have been a barrier to moving forward with systemic treatment. We take this good news in stride as we move forward in what will hopefully be the final phase of treatment.
Kev will be admitted this weekend to the hospital transplant unit at Butterworth where he will undergo another auto transplant (His own stem cells. Recall my earlier post that they harvested enough cells for 2 or 3 transplants back in March) The best way to treat myeloma is to dose it with drug agents that it hasn't seen before, so instead of Melphalan, he will be getting BEAM chemo. Super strong combo that actually penetrates the blood/brain barrier (should've been used the first time, you think?! But brain involvement is so rare, and I understand this...my disgruntlement is improving). He will get this BEAM for six days, wiping out his bone marrow and plasmacytomas to the point where his stem cells will need to "rescue" him.
I wish the treatment stopped here--but recent research and the experts feel that this won't give us a long-term remission. His cancer is very aggressive and his first auto wasn't successful. So what we need to do is give him an entirely new immune system. This is where rockstar #2, Matt VanZanten, comes in.
When his levels rebound after the auto (hopefully 2-3 months), he will be readmitted for an allo transplant (Matt's stem cells). This transplant is slightly different than the auto in that the chemo they give to Kev beforehand isn't as intense, but the recovery takes a long time. We will deal with graft vs. host disease (hopefully not severe) and greater possibilities of infection and set-backs. Kev and I are being gently prepped by the docs that he will probably never be the exact same (speaking in the physical health sense) as he was "before." After almost a year of treatment--we'll take it. The allo will hopefully be the final phase of treatment for a long, long time. The cancer field has even begun naming this a "curative" approach for myeloma. Praying, praying.
Throughout the testing--these last 2 weeks-- Kev has been going to work and functioning very well. The radiation side-effects are still lingering on, but his arm strength is improving along with his eyesight, and his pain levels are under control. Some days are great emotionally, some are hard. We're learning so much about the importance of grace with each other, and continue to enjoy God's renewed blessing on our marriage.
As I travel this faith journey, I am learning that in many ways I have fallen into the same trap that the Galatians fell in to: that Jesus isn't enough. That if I just had more faith, read this verse, confessed this sin, changed this behavior--that things would get better and that Kev would be healed. But Paul tells the Galatians that we cannot be made right with God by obeying "the law (religion)" and that Jesus Christ is the only way to freedom (Gal 3:21-22). Sometimes things are just too good to be true! I don't need to DO anything?! I imagine myself lying down next to a seated Christ and Him placing his hand on my head telling me, "this is it, Kristin. This is all you have to do." The pull of religion is strong because it allows me a sense of CONTROL. But when I remind myself of God's LOVE I'm learning that instead of feeling panic that I don't have control, I feel this peace in understanding that the God of the universe has plans to prosper me, not harm me (Jer 29:11) because he loves me.
I loathe not knowing how this will turn out, it rails against my fleshly desires like nothing I've ever experienced. Jesus felt this too: "The spirit is willing, but the flesh is weak." (Matt 26.41). He knows how this feels, how I feel, how Kev feels.
God bless you all. We don't have enough thank-yous to capture what an amazing blessing you have all been to us. Whether it was a meal or a prayer or a vacation, or a clean house-thank you.
If you can recall from my last post, I shared that we were leaning away from a second auto transplant. If you enjoy nerd medical info, I will share below why this reasoning changed. If not, stop reading here :-).
Kristin
**Our original hope was that Kev could be treated with some novel chemo agents in order to get a remission prior to the allo (donor) transplant. However, we learned that unfortunately these are considered "light" chemo and that Kev's cancer needs to be hit with a "large bat." This would mean intense, inpatient chemo over several months. The doc felt that we would be held up with dose delays due to Kev's levels not rebounding quickly enough and that the myeloma won't wait for his blood counts to improve. So the consensus was to hit this "hard and to the point." Dosing him high with chemo and rescuing him with his stem cells will get us a better removal of disease bulk than undergoing months of systemic chemo and probable dose delays. I asked if we would still go into the allo if we don't achieve remission following the auto, and the answer is, yes, we will. This will simply slightly lower the probability of a successful allo transplant. Good job if you have hung in this long.**
