To summarize, 2024 is going to be awful, but it is also going to be beautiful. In between feeling terrible and not wanting to eat, I’ll try and share snippets of how this whole process of a bone marrow transplant is. Some days I’ll be sad that this is the reality of my life; other days I’ll be so grateful that we’ve come so far along in science that this is even possible and that I have the support of family and friends to get through this process. So bear with me on this non-linear journey of healing. <3
Wednesday, June 12, 2024 – Day 14 I engrafted today! That means that my absolute neutrophil count is above 500. Morning Labs Afternoon Labs WBC 1.18 1.98 Hgb 9.3 9.8 Plt 19 27 ANC .61 not done in afternoon Woot woot!!! While I still have a long way to go, this is a HUGE milestone. […]
Engraftment (Day 14)!!! HBD Mom! Read More »
Monday, June 10, 2024 – Day 12 Today is the first day in a long time that I finally could sit up and talk/whisper to someone. I was also able to go on a 10-minute walk today too. It’s not much, but it’s so much more than what I’ve been able to do this last
Baby Steps (Day 12 and 13) Read More »
Monday, June 3rd, 2024 – Day 5 Today was pretty miserable. I don’t even know how to explain it but my mouth is on fire, and it burns to swallow anything. I can’t eat so they decided to start me on tube feeding today. Thanks to my home team (Dr. Chau) for convincing me to
Hell Week (Days 5-11) Read More »
Saturday, June 1, 2024 & Sunday, June 2, 2024 – Day 4– Day 3 Good news is that this weekend is the last part of chemotherapy. Bad news is that the next few weeks will suck while I wait for engraftment (aka for my body to accept Gordon’s marrow). Today I start cyclophosphamide for two
Chemo Part 3 (Day 3 & 4) Read More »
Wednesday, May 29, 2024 – Day 0 Today was a lot of emotions. From a medical perspective, though, it was actually a much bigger day for Gordon than for me. A transplant can happen in two ways – peripheral stem cells or bone marrow harvest. There are pros and cons to each of these, but
Happy Birthday to Me (Day 0) Read More »
Thursday, May 23, 2024: Day -6 I’ll be getting two different chemotherapies the next four days: busulfan and fludarabine. Today’s dose included busulfan, a 3-hour infusion that started at 4am. The reason we had to start so early is that we have to do something called pharmacokinetics to determine the optimal dose to give me
Chemo Part 2 (Day -6, -5, -4, -3, -2) Read More »
Saturday, Monday, May 18, 2024 I have a 5 day break from chemotherapy after doing 3 days of Campath (alemtuzumab) on Wednesday, Thursday, and Friday. The weekends at the NIH are eerily quiet but it also means it’s a good time to get out of my room since there are barely any people in the
Drug Holiday (Day -11, -10, -9, -8, -7) Read More »
So the countdown officially starts. Tuesday, May 14, 2024: Day -15 I got my central line placed. A central line is similar to an IV line in that you can get IV medications. However, central lines can stay in place longer than an IV in your arm. It also makes it easier to draw blood
Campath (Day -14, -13, -12) Read More »
I found myself crying a lot today. Random spurts of tears streaming down my face, most of the time completely unprovoked, and me thinking to myself god damn.. stawp. wtf. It’s the realization that today is my last day out in the wild before I go into the hospital tomorrow for a month and a
The Calm Before the Storm Read More »
This week is part 2 of meeting all the doctors. I found out on Monday that I might have some permanent hearing loss (womp womp). As I mentioned in my last post, I started to have some hearing loss last week. At first I thought maybe I had gotten water in my ear when I
Transplant Workup Week 2 Read More »