I haven’t previously shared this, but around the same time we heard the good news of the marrow biopsy, we were also dealing with an "incidental" ailment: A fast growing cyst on Kevin’s leg. Initially, the doc wasn’t sure what it was, thinking possibly it could be a benign sebaceous cyst since he is immune-suppressed during chemo. It quickly became apparent, however, that it was most likely not benign, as it was growing fast. Kev had it removed and simultaneously biopsied. The results showed that it was myeloma. At first we were somewhat okay with the news, since this may explain why he still had "cancer protein" in his blood but tested with clean bone marrow.
A couple weeks went by, however, and more and more of these cysts began to appear on Kev’s arm and back. The doc began to become more concerned, and thought it best to consult with our other team member, specialist Dr. J, in Chicago. We found out these cysts are called plasmacytomas and they typically don’t appear until after someone has had a remission and the disease is in relapse. The docs all agreed that this was very unusual, which is something you DON’T want to hear when it comes to cancer.
Ideas were being tossed about, drugs were being contemplated that we’d never even heard of at this point, and our complete response "high" was quickly doused with the reality that this cancer wasn’t going to go down easy.
We consulted with the transplant doc, our oncologist, and Dr. J, and it was decided that the best course of action would be to give Kevin an alternate form of chemo than what is standard prior to a transplant. It is called DVT-PACE (each letter represents a separate drug. He was on RVD before—3 drugs. Now it’s 7). This chemo isn’t messing around—it involves hair loss, severe nausea, and all the other lovely side effects of killing cancer. It also involves a weeklong hospital stay.
The transplant doc continues to be confident that complete response following the transplant is STILL very feasible for Kev. I’m scared and confused about these new symptoms, but I’m also thankful that the doctors are responding accordingly and wisely.
He will receive 2 rounds of DVT-PACE, and he is currently receiving round one. Each cycle is 28 days, so this now bumps his transplant process to the end of March/ beginning of April. I am very ready to get this transplant show on the road, and these scary cysts and delay in transplant is frustrating and very disappointing to us. It is very easy to feel like you're in the ocean at the mercy of huge waves; tossed up….down…..choking…..breathing—but I choose to not live this way. My foundation is firm and my anchor has been securely fastened. Although everything is crashing around me, I hold fast.
I was talking with someone today and they mentioned to me that they were feeling angry about what our family was going through. I want to please implore all of you to not be angry about this trial that our family, specifically Kevin, is going through. Although I have my angry moments and days, in all honesty, I am not angry about this. God has chosen to allow this for Kevin and our family and God LOVES our family. Everything God does is love and a manifestation of his love. I place this knowledge like an easy yoke upon me and it gives me a peace that is truly supernatural. Although I plead and pray and make sure God knows my preference for how all of this should turn out, I find rest in the basic tenets that Jesus offers to all of us.
"If anyone comes thirsty to me, and they keep coming to me to drink, out of their soul water will flow."
--Jesus
Love to you all,
Kristin
