Journal entry by Rebecca Nye —
90
It has been awhile since my last update. Here are some odds and ends as we stand now:
Overall things have been progressing well. My numbers had been good and other than some minor nausea and fatigue, I feel well. My skin rashes (GVHD-sort of like rejection) have disappeared after high doses of steroids.
This past week I did have a couple of concerning labs....immunoglobulin g, which is key in fighting infection. I'm waiting to find out what we are doing about it but it indicates that I have to be even more vigilant about being exposed to anything that could make me sick.
On Friday I have a bone marrow biopsy under sedation. This will tell us the health of the bone marrow, if the mds is gone, if my sister's cells have engrafted and if that troublesome RUNX1 mutation is gone. Thank you to my friend Nan for taking me.
I had the experience of gout last week. Not fun. Fortunately an increase in prednisone helped promptly. I am hoping that doesn't return.
March 3 is my milestone 100 day. It indicates that the most critical, dangerous period has past. Restrictions are slightly loosened and hospital visits become monthly rather than weekly. I think with my poor numbers, however, I won't be able to loosen up at this point.
I am pushing myself to be more mentally active and busy. I began reading as I have a bit better concentration. I highly recommend Fannie Flagg's The Reunion of the All Girl Filling Station and The Tender Land by William Kent Krueger. Today I did a little project of making apricot oat bars. It feels like a victory to get little things done.
I joined a research study at Dana Farber looking at wellness and happiness following a stem cell transplant. There will be weekly exercises on things like meditation, gratitude, journaling etc. There are so many feelings and emotional challenges after a stem cell transplant that the study looks at what strategies can help with coping.
Lanie says she is starting to see stubble but there still is a lot of smooth head. I am working on embracing my baldness because I am so much more comfortable without my beanies.
I will update more after day 100 and after my bone marrow biopsy results are in.
Thank you for your interest and concern.
❤
It has been awhile since my last update. Here are some odds and ends as we stand now:
Overall things have been progressing well. My numbers had been good and other than some minor nausea and fatigue, I feel well. My skin rashes (GVHD-sort of like rejection) have disappeared after high doses of steroids.
This past week I did have a couple of concerning labs....immunoglobulin g, which is key in fighting infection. I'm waiting to find out what we are doing about it but it indicates that I have to be even more vigilant about being exposed to anything that could make me sick.
On Friday I have a bone marrow biopsy under sedation. This will tell us the health of the bone marrow, if the mds is gone, if my sister's cells have engrafted and if that troublesome RUNX1 mutation is gone. Thank you to my friend Nan for taking me.
I had the experience of gout last week. Not fun. Fortunately an increase in prednisone helped promptly. I am hoping that doesn't return.
March 3 is my milestone 100 day. It indicates that the most critical, dangerous period has past. Restrictions are slightly loosened and hospital visits become monthly rather than weekly. I think with my poor numbers, however, I won't be able to loosen up at this point.
I am pushing myself to be more mentally active and busy. I began reading as I have a bit better concentration. I highly recommend Fannie Flagg's The Reunion of the All Girl Filling Station and The Tender Land by William Kent Krueger. Today I did a little project of making apricot oat bars. It feels like a victory to get little things done.
I joined a research study at Dana Farber looking at wellness and happiness following a stem cell transplant. There will be weekly exercises on things like meditation, gratitude, journaling etc. There are so many feelings and emotional challenges after a stem cell transplant that the study looks at what strategies can help with coping.
Lanie says she is starting to see stubble but there still is a lot of smooth head. I am working on embracing my baldness because I am so much more comfortable without my beanies.
I will update more after day 100 and after my bone marrow biopsy results are in.
Thank you for your interest and concern.
❤
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