I am here and okay. There have been some changes but I feel strongly that they are the right ones. I am no longer pursuing inpatient IVAC. It did not hold the disease for more than a couple of weeks and for the massive side effects it caused and all the required transfusions and hospital time it required, it seemed against all logic to keep going with more cycles. I’m having unmistakable lymphoma pain.
We’ve regrouped – long conversations with Dr. D, Dr. O, my therapist, family, special friends and most importantly, myself, over the past couple of weeks. I have decided not to pursue a third transplant at this point. I am trusting my gut and my instinct on this one, which are speaking to me very strongly. I am not on board mentally, physically or emotionally and I’m most concerned about quality of life right now. I would need to be in close-to-perfect remission
With that said, tomorrow we head for a beach vacation in Rhode Island where we’ll spend time with my brother- and sister-in-law and niece and nephew and then my parents, sister and maybe brother and wife with friends dropping in and out as well. Sam Dog is coming, too. I know that the sea and the sand will do wonders. We secured the house rental months back, and I'm so excited that the timing actually worked out for us to make it.
I’m starting up an oral low-dose chemotherapy regimen today, which I’ll be able to bring with me. I’m getting hooked up with at-home Neupogen shots in case I need them. I’m able to get bloodwork checked at a lab down there. I’m in the hospital right now getting two units of red blood cells to boost my energy as my counts were very low and I’ve been very symptomatic (hematocrit of 7.4). Dr. O and his team are doing everything to accommodate this vacation realizing, as always, the importance of being able to manage this disease while still living my life.
I hope to have some quality writing time with my laptop over these two weeks away as well. I’ll write in more detail about what this all means but that’s the gist. I’m looking forward to sunsets over the ocean, lobster rolls, outdoor showers, and plopping my toes in the water, ass in the sand.