It has been wonderful being home, after being away for a month and a total of 24 days in the hospital (24 days!!!).
I have had some very exciting news from Dana Farber. My free light chains (one of many myeloma markers) have completely normalized. My heavy lightchains have gone down by lalmost half and my M-Spike is also down by almost half.
Lisa, Erica, and Kirsten “watched” me this week while Scot worked. Next week (my last week that I am required to be watched) Erica and Sarah are on duty. Sarah will take me to my Dana Farber visit on Thursday (bone marrow biopsy, blood work, EKG, and 2 MRI’s because insurance is denying the PET scan again).
I’ve been feeling pretty well. My legs have been sore, I think from laying in a hospital bed for all that time. The only remaining bone pain seems to be my lower back. I had aggressive lesions at L1 and L5. I get tired and nap every afternoon.
When I am not at home being watched I am at Smilow (3 days a week) getting blood work and transfusions as needed. This is because of my lingering cytopenia. Here is some information about cytopenia from Healthline:
Cytopenia occurs when one or more of your blood cell types is lower than it should be.
Your blood consists of three main parts. Red blood cells, also called erythrocytes, carry oxygen and nutrients around your body. White blood cells, or leukocytes, fight infection and battle unhealthy bacteria. Platelets are essential for clotting. If any of these elements are below typical levels, you may have cytopenia.
Several types of cytopenia exist. Each type is determined by what part of your blood is low or decreased.
- Anemia occurs when your red blood cells are low.
- Leukopenia is a low level of white blood cells.
- Thrombocytopenia is a deficiency of platelets.
- Pancytopenia is a deficiency of all three parts of the blood.
The symptoms of cytopenia depend on which type of the condition you have. They can also depend on the underlying problem or condition that’s causing the low blood cell counts.
Symptoms of anemia include:
- shortness of breath
- poor concentration
- dizziness or feeling lightheaded
- cold hands and feet
Symptoms of leukopenia include:
- frequent infections
Symptoms of thrombocytopenia include:
- bleeding and bruising easily
- difficulty with stopping bleeding
- internal bleeding
My hemoglobin held from my transfusion at the hospital last Friday, until this Friday. My platelets did not fair as well. They were 24 last Sunday, 11 on Wednesday (I received a transfusion of platelets) and 10 on Friday (received more platelets). My ANC (absolute neutrophil count – what they follow for the leukopenia) has been ready at 200 even as I give myself Neupogen shots every day.
I did some research and found a study with this chart showing how long it takes CAR-T patients to recover from low blood counts.
The research nurse at Dana Farber threw out 2 months as a time frame. We’ll see.
What it means for my day-to-day is that I have to flush my trigger-lumen central line every day, give myself the shot of Neupogen and go to Smilow 3 days a week. If I need a transfusion the visit can be 4-6 hours.
Trying to be patient, but you know that’s not exactly my forte!
Let me also take an opportunity (again) to thank everyone who has reached out, sent food, babysat me, sent other gifts and treats. I am so blessed to be loved and cared for by so many. Everyone’s generosity has been mind blowing.