I know I was posting daily updates then haven’t posted since I got home. I’ve been so exhausted and also trying to process everything my doctor recently told me — which was upsetting. I also had Cesar’s family in town which was wonderful to see everyone, but I anticipated having higher blood counts by the time they arrived. It’s much harder to have guests when I’m at a high risk of infection.
Here’s the update:
Doctors sent me home with VERY low counts — something they normally don’t do considering we live so far away from the hospital. They anticipated my bone marrow to rev it’s engine and start producing MANY white blood cells, red blood cells and platelets quickly. But, my body didn’t do that. 7 days later I STILL had only 19 platelets. My white count and red went up too but very slowly. Yes it’s cumulative and should take longer but not THIS long.
When I saw my doctor Friday he said:
” I’m concerned your body isn’t clearing the chemo well. it is toxic and can damage the organs. It is cumulative and builds up in the body but your body isn’t recovering well. While I think you need another round of chemo. I don’t think your body can take it. I will wait for another biopsy and think hard over your case.”
He is concern about damaging my liver, kidney or other organs while trying to kill the cancer. So the question is do we stop treatment ? Do we wait and watch for a month or two, and see if the cancer is gone ? Was it enough to do the job? I might look fine on the outside but internally I’ve been beaten down. AND If I need a transplant I will need chemo again and my doctor might want to save that “chemo” card for a transplant when it’s really needed.
So we sit and wait.
My doctor has pushed back my bone marrow biopsy three times now. It is now rescheduled for Sept. 5th. The hope is my body rebounds, produces enough cells to do the marrow by then, and we get a good reading. If the marrow is empty and the stem cells are clear — my doctor will carefully decide how and when to proceed with the next HIDAC (High Intensity Dose of Ara-C). If there are any signs of cancer. I need a transplant which also requires chemo.
Again. Another reason to #ArmorUp for LIFE and get fit.
I started off fit and keep getting knocked down. Imagine if this if you or someone you love and you show up weak to fight this.
While I want to be home with my son. I do want another round of chemo if that’s protocol so I can get well and move on with my life. I’m tired of living out of a suitcase for 8 months. Gabriel needs to get settled. Get into pre-school and be a normal kid.
But while we wait–I’ll be home longer than usual. The silver lining is that means I get more time with my son. I’m hoping he will rejuvenate me. He certainly makes me so happy. He knows more than we think. Fighting cancer is part of his life too. Every night we both wear our Mickey Mouse masks and he watches me or Cesar use syringe to flush my Hickman line. The convo normally goes like this:
Gabriel: “What doing Mami?”
Me: “Taking my medicine”
Gabriel: Ohhhh Kay. My Mami ALLLLLL better now???. Yay.” And then he claps.
It’s so cute. Truly unconditional love. Then after we say our prayers Gabriel leans over and kisses my Hickman on my chest. He says “I wuv you Mami. I kiss your boo boo. all better. No more medicine.”
This little boy keeps me fighting and keeps me one step ahead of cancer. Tomorrow the alarm goes off at 4am for an early drive to Johns Hopkins for more blood tests and hopefully more answers.
Thanks for the prayers, love and support.