Hi! Here I am at Day+160! I’ve been busy, happily getting adjusted back to my “normal” life.
I’ve still been dealing with stomach issues. After learning that I acquired a new cinnamon allergy, new gluten intolerance, possible soy and yeast intolerance, add that to my good ‘ol IBS on overdrive, it’s been kinda difficult to find a diet that won’t upset my stomach. FODMAP diet + lactose-free + gluten-free + soy-free + yeast free + no almonds, strawberries or cinnamon = AIR…I can eat AIR. So, if I look thinner it’s because I’m no longer on steroids…also because I CAN’T EAT! I’ve been adding “the foods” (nothing that brings joy) into my diet a little bit at a time and sometimes I can tolerate them no big deal. Other times “the foods” are horribly wicked evilness disguised as something that tastes really really good and then they destroy my entire day…or two. Doctors are still trying to figure out what it is. It’s a process, we’ll figure it out. My other issues so far have been minor and are the result of being on steroids for a looooong time, and basically putting my body through a nuclear blast. I just need time.
I really have held back from posting this update because so much recently has been unknown and I didn’t want to write about it until I knew more details. I am confident in my doctors and what they have told me so now I feel I can finally share the news.
Back in December, very soon after coming back home, I noticed some spots or “lesions” on my skin that were alarmingly familiar. I was seen by the dermatologist at Mayo and a biopsy confirmed that the cancer has returned on my skin. My recent PETCT was clear and bloodwork has also been clear so they are confident that it is only on my skin. *sigh*
To say that I was disappointed when I heard this is the biggest understatement of the century. I wasn’t just disappointed, I was scared, angry, in disbelief and completely inconsolable. I immediately thought that the transplant failed. My cancer had returned not even 3 months after the transplant. I did not even have enough time to be home and feel well, and here we go again. What does this even mean?! This thing failing was not even something I had considered. Well, the news knocked me off my feet and my heart was in pieces. Fear had taken over and I had already resigned to giving up. Not because I don’t want to live, but because I know how hard it has been physically to survive. If it weren’t for my faith and my family talking me through those first few days, I’d be lost. But it was God’s peace (and a few days at the beach) that finally allowed me to breathe and pull my strength together. I had many questions still unanswered and I was definitely jumping to the worst possible conclusion without knowing all the facts.
When I returned to see the doctors again, I was in a better place emotionally but still very anxious to hear what my relapse meant. My transplant team (oncologists) were very reassuring. (I’m so thankful for them-I really do love them.) They had 3 doctors come into the room, basically just to talk me off the ledge. After explaining what a relapse meant for me, they assured me that they are still optimistic about my eventual remission. It DOES NOT mean that my transplant was a failure. It DOES NOT mean that my disease was too aggressive or become immune to treatment. My disease has just been “reset”. I will still need to treat it but they are still confident that my disease will respond to basic therapies and will not be aggressive like before. I still need more time for my new system to work. After meeting my team and the new dermatologist, I feel so much more hopeful and at ease. No, I can’t claim to be cancer-free like I’d hoped. And yes, I will still need to do treatments and see doctors, but I am NOT back to where I was before transplant. I could easily look at this and say, “Oh great! I have to start all over again? NOOOOO!” But instead, I choose to say, “Great! I’m starting over again! New immune system-new chance at life! I still got this!” I am getting stronger every day and I still believe that I will live a long healthy life.
Thank you for keeping up with me. Thank you for your continued prayers. They are so very much appreciated and have definitely kept me going, especially these last couple of months. I thank God for each of you!
Here’s a short video of My Journey