Good News again today. I am exhausted from running all around New England, from my home to Dana Farber and back, but it was all worth it.
My labs look beautiful, almost textbook. My platalets are 258, double what they were last week and NORMAL.
My white count and red counts are coming up, 4.1 & 2.96 respectively. H & H are 10.5 & 30.5, which are both a little low, but nowhere near transfusable.
My chemistry report (with electrolytes and liver enzymes) looks fabulous. No problems there. I’m looking like a healthy woman inside and out.
I never expected this to go so easily so far. Knock on wood and keep praying please.
Prior to my transplant, I had visions of all the terrible side effects that occurred in my last transplant, rare, excruiciating, life threatening side effects, but I haven’t had any of those.
My little dot is probably the start of shingles. My acyclovir was changed to valtrex 1gm three times daily, which is stronger and just as user friendly. We need to drop that little spot on its ass before it gets any ideas, like trying to send me to the hospital for intravenous antivirals.
The plan is to go back on Thursday to remove my hickman line (I will no longer have an extra appendage), get repeat lab work, and then get another “You look fabulous” from Alyea and Melissa.
At that point, I’ll be able to travel to Dana Farber only once a week. My prograf levels will continue to be checked, as well as the rest of my labs and a general assessment. I need the once over weekly.
At some point, my levels will begin to drop again. This is to be expected as the donor cells take over.
I’m going to explain the process in the analogy of falling in love.
The donor cells need to take their time to learn about me. I’d prefer that they be cautious and thorough, like exploring a new lover. I need to be strong enough to allow this in my life. My donor’s cells need to be comfortable with me and understand my body before diving head first. Neither one of us would want to get hurt.
During this period of getting to know each other, my cells will wane and make space within my body for the maturing & growing donor cells.
I’m slowly letting my new soul mate move in. I’ll start losing a part of myself to be replaced with them. For this to be allowed, my numbers have to dip. I have to give a piece of myself. Quid Pro Quo.
This is expected. It does not indicate a failure in treatment or a huge health setback.
Remember, it’s like falling in love. We both need to give and take until we can co-exist together, and then ultimately, settle into our permanent lifelong roles, where my immune system no longer exists.
I love this kind of theoretical science. It’s a little science, it’s a little bit art, it allows something very structured to walk a thin line.
I hope this helps you understand the process a little more clearly.
It’s a delicate balance, and this is the reason for my severe restrictions. I am home, but I would prefer to be left alone for the remainder of the week.
It is nothing personal, but I am too fragile right now. I do not want setbacks. I need rest. I’ll enjoy visitors next week if anyone is interested in visiting.
I’d prefer if you call first. I can not see you if you are sick, a getting/getting over being sick, have been exposed to someone who has been sick.
You must take off your coat and shoes in the mudroom.
You must immediately go to the half bath and wash your hands, put on a mask, and don gloves.
I’m not allowed to hug or touch you right now. Please sit on the couch in front of the windows.
I’m sorry to be so strict. I obviously miss my socialization and it is very difficult for me to remain isolated. However, I like my life better, and these are life or death restrictions. Thank you for respecting them.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."