What a cluster fuck 2024 has been, and it’s only January. Where do I even start?
I got a percutaneous endoscopic gastrostomy (PEG) placed on January 5th. It’s basically a tube that goes from my stomach out of my abdomen and will allow me to eat if I can no longer eat for myself through my mouth.
I also got this tube placed because I was having a lot of oral ulcers and by the time Thanksgiving rolled around, I wasn’t really eating at all. I had a lost a lot of weight and was back to being below 100 pounds. I was supposed to go down to California to visit my brother and spend the holidays with my family, but I was so tired, fatigued, and failing to thrive that I called my brother the morning of my drive down to NorCal that I wasn’t going to be able to make it. Instead, we booked a last minute ticket for my mom and my dad to come from Orange County to Seattle to cook for me and help me around the house.
They said it wasn’t a big surgery, but man did I feel terrible after. I stayed in the hospital for a night, couldn’t eat for two days, and finally, when I was able to start eating solids, I vomited for 3 days straight. My poor Maple was confused why I didn’t leave my room for 3 days and why she wasn’t allowed in. Maple would sit outside my door and whine, and when I was able to finally stand up, I’d prop the door open and stick my hand out to give her pets.
By January 12, I got an email from Fred Hutch canceling my transplant (I was originally supposed to be admitted on to the service on January 24, chemotherapy on February 6, and transplant on February 13). The whole experience with the Hutch has been underwhelming to say the least. After having my consult date changed three times to three different doctors, I finally had a consult in November 2023, only to be told in December by the scheduler that the original plan that was discussed would no longer be the plan. The doctors at Seattle Children’s reached out to the adult team to discuss my case after they saw the note from December pop up on my chart (wouldn’t it have been nice if this was all done before speaking to the patient?). In any case, long story short, after that initial consult in November, I never heard from another doctor at the Hutch again, and the only form of communication I received was from a scheduler over email.
Over the weekend, while I was vacillating among the five stages of grief, still insisting to stay in Seattle to do the transplant, being really angry that the process to the NIH didn’t start earlier, bargaining with my doctors to see if we could still do the transplant here in Seattle but consult with the doctors out in Maryland, crying randomly while doing puzzles, my brother Gordon and my village did some sleuthing. I have a group of friends who are do’ers, and while I normally pride myself on this quality of mine, I just didn’t have it in me anymore.
One of my childhood friends, Michelle, is currently a bone marrow transplanter at Cincinnati Children’s Hospital. We talked about how this is the one shot I have to get this right. Her research focus is childhood cancers, but she does see immunodeficiency kiddos like me when she is on call, and when she has a immunodeficient patient, she is on more high alert with them because they’re just less predictable. One of Michele’s old co-fellow, Dani, is now at the NIH and in speaking with her, Dani has had patients with NFKB1 haploinsufficiency. The NIH also has an entire department of providers who focus specifically on transplants for patients with immune deficiencies. It all makes rational sense, but as you all know, deleting something off my holy calendar is anxiety inducing.
Another one of my friends, Alisa, reached out to various friends in biotech who connected her to top folks at the NCI. She emailed them on my behalf, and ultimately connected me to one of the docs whom I emailed on MLK day. To my surprise, she responded the next day, telling me that the NIAID (National Institute of Allergy and Infectious Diseases) and NCI (National Cancer Institute) had already discussed my case, and that a research nurse would reach out soon.
The research nurse actually called me the next day. I don’t know why it’s so surprising when things actually go as planned and I don’t have to chase people down to follow through on things they say they’ll follow through on, but I’ll take it.
All of this has been very humbling, and I’m grateful for the community who’ve helped me navigate a healthcare system, even when I could not do it on my own.
I’m scheduled to be out in Bethesda, Maryland on March 2-9. I’ll be inpatient that whole week, doing all of the tests to get my baseline numbers. I don’t know when the transplant date will be but I’m sure once that week comes, they’ll be able to come up with a plan. I’ll bring my coziest sweatpants, but let’s be honest, I really haven’t changed out of them since March 2020.
But in slightly more uplifting news, Gordon came to visit. We took a lovely trip up to Blaine and got to explore Bellingham as well. Time with family and being in nature always resets me.
