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 19, 2024 to Friday, June 28, 2024 – Days 21-30 It’s been over a week since I’ve made it to the outside. It’s a big milestone to leave the hospital, and often times we think that the patient is so much better at this point, but that’s the farthest from the truth. I […]
Life on the Outside (Days 21-30) Read More »
Big news: Discharge is happening! I know the road is still going to be winding, but I am so happy that I’ll be able to sleep in a real bed. I haven’t been to the outside in 5 weeks!!! Saturday, June 15, 2024 to Sunday, June 16, 2024 – Day 17 & 18 The weekend
Jailbreak (Days 17-20) Read More »
Trigger warning: discussions surrounding bodily fluids so if you’re not comfortable with that, move along. Thursday, June 13, 2024 – Day 15 Today was an okay day. A lot of the dead flesh in my mouth sloughed off this morning. It’s great because it means my body is healing, but unfortunately, that also means the
I’ve been thinking a lot about the cost of being sick as a young adult (yes I know I’m almost 40), not just the financial aspect of this whole situation, but the grief that comes from having to deal with something like this my entire life when most others don’t until much later in life.
The Cost of Being Sick Read More »
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 »