Today we met with #bestdocever and we talked about how I am doing health wise. The reality is this: I am dying. My brain has bled from the mets that are in my brain, and I’m still experiencing problems from those bleeds. We are having them treated with whole brain radiation, which is hopefully killing them, but will know when we are finished with radiation how that went. This course of radiation should be complete in the middle of October. In September I spent several days in the hospital with pneumonia and sepsis from the pneumonia. We had to leverage morphine to combat the cough so that I could get out of the hospital. The X-ray in the hospital showed that 1/3 of my right upper lung was white from pneumonia. I had to take time to recover to try to breath. 2 weeks later, I’ve had another lung x-ray that still didn’t look good. It got better, but now its back. It makes me tired a lot. It’s exhausting walking to the car, the bathroom and I ride around in a wheel chair. I find myself winded a lot. We don’t know if this will get better, but I’m able to get around without coughing too badly.
My platelets have remained extremely low, 150k-300k is the normal range. Mine have been as low as 8k and as high as 52k out of the ICU. When my platelets are below 20k, I’m not allowed to have whole brain radiation, so I’m having almost daily infusions of platelets to raise the level high enough to make that bar of 20. Starting this week, I’ll have HLA platelets twice a week that will hopefully do a better job of raising my platelet count and allow continued radiation. If they work, great, if not, I’ll go back to having daily infusions of platelets. My overall blood chemistry has been off for weeks, so I’m not able to have any chemo right now. Chemo goes after fast dividing cells, which hits cancer, but also my bone marrow. Until my bone marrow recovers, my overall blood counts will be off (white blood cells, red blood cells, platelets, etc.).
When I talk to #bestdocever today, we talked about the amount of time left. He told me that that he thinks I have about 2-4 months with brain radiation and no further treatment. We have discussed Death with Dignity which is an option in our state. I’m grateful to have a doctor who supports what ever I need, whither I choose that to be Death with Dignity or other options.
I don’t want to die. I don’t want have the conversation with the children about me dying. I don’t want to have to tell them that Mommy will die soon. I’m in denial. But someday, I’ll have a conversation with them and I have to decide how to make this work. In the mean time, there so much advocacy work I wish I could accomplish; there is so much work that our community needs. When I ask myself “what advocacy to do for our community?” I think about Jenny Grimes, who helped found MetUp with me, and I ask myself “Will this help save Jenny’s life?” If the advocacy will help keep people like Jenny alive, then the advocacy is worth doing. If it won’t help keep people alive, then it isn’t worth doing.
I can’t do the work anymore given how sick I am. I hope others in our community will remember that the only important thing they can do as advocates; the thing that is most important, is keeping people alive. I know its not easy, but it HAS TO BE DONE. It has to. I’ll do my best, as time goes on, to talk about the life I’m having to live. I can’t share my story all the time, every day, but I’ll keep doing what I can. I’ll hope that somehow I’ll get better. And if I can’t, I’ll live the life I have as best I can.
I’m grateful to all of you for supporting me, and I wish, oh how I wish, things could be different. I love all of you.