Waking up from ‘confusion’ (as the doctors and my family have nicely put it) has been a fairly confusing experience. I mentioned in my last blog post that a drug I was on (sirolimus) was making me ‘confused.’
I hallucinated that I only had one leg and it was a tree trunk. I was paranoid that there were more colors in the world than I could see (crazy-induced color blindness?) I also had full conversations with people in my head that I thought were real and told my dad all about a book I was reading (you might be able to guess I wasn’t getting much reading done).
Other than that, I don’t remember much. I consented to several surgical procedures including an endoscopy, power line, and the full ICU experience but the only thing I remember is that one time I signed one of the forms with my left hand (unclear why).
So anyway I feel very traumatized and it has been quite the process uncovering this hospital admission. It has helped me when people explain what I’ve been through and I am grateful to have no lasting damage. Overall, I have been told that it’s better I don’t remember. I am really controlly about scheduling my life so that’s tough for me but I am working on letting it go. On the bright side, I earned a new title when a 10-year old asked his nurse who that “really sick girl” is. There was definitely a stretch of time where it felt like they really should just throw me in the trash and not in a sad self esteem way but because I was so profoundly ill that I couldn’t imagine ever being normal again.
Oh yeah also I forgot to mention in my last blog post that the gut GVH made my stomach look approximately 12 months pregnant. And all 12 months’ worth hurt what I feel was an unfair amount (also it contributed to my “really sick girl” look). I went from 62 kg to 78 (!!) and then back down to 55. I became aware of this when I ‘woke up’ from my ‘confusion’ around the week of Christmas and proceeded to have the most miserable, painful week of my human existence. Luckily, the swelling has gone down now and my main discomfort is constant hunger/thirst. I am on IV nutrition and people ask me often if I still feel hungry/thirsty. The answer is YES. Seriously yes.
When I was first diagnosed with Graft vs. Host disease (which, by the way, is a transplant complication and NOT cancer if you don’t feel like googling) I was SO THIRSTY it was uncontrollable I had to drink water and I totally cheated and paid for it dearly. Now I’ve settled into the constant background of thirst/hunger where it’s always there but I’m handling it. Honestly it reminds me of Twilight like they are always thirsty for blood but they restrain themselves for the good of their souls/love lives. Also at first sometimes they cheat. Re-reading that makes me feel like my literary talents and tastes have really regressed.
I know this covered a lot of the same stuff as my last blog post but I was still in such a haze last time that I wanted to try again. It’s been hard – really, really hard. Sometimes I forget that what I am dealing with is seriously next-level. Today at rounds my doctor told me maybe I can have some broth next week and I was like oh, okay that’s not too far away but then as I was writing this I realized that it’s pretty absurd that another week of consuming literally nothing by mouth is nbd to me.
There is something that I really wanted to write about in my last post but I could not find the words – Abri’s death. I still don’t and will never really have the words but I will try. Abri and I were diagnosed with AML three days apart from each other back in June. She was 13 months old. We spent the next six months together in the hospital and I became incredibly close with her and her family. I have written this before but I want to repeat it – they truly made every day better.
Watching Abri grow up before our eyes while on chemo was inspiring. How do I capture a baby soul in words? Really, how can you capture any soul? She was strong-willed (not afraid of using the word no) and she had the cutest baby tongue she would stick out and her favorite color was purple and she was learning both English and Spanish and she had a really cute pair of pink Nikes and she was a little obsessed with our Frozen bowling set and she had this ridiculous stare where she would just look at you and it was almost expressionless but also a little haunting. Her cancer relapsed and stopped responding to chemo and I hate that. There is a huge hole in my life and I have no idea how to deal with it but I am learning. Most of all, I am sad for Abri and the future she deserved.
At around 5 in the morning on December 8, I had the privilege of rubbing Abri's feet as she passed. Abri was and is surrounded by love, dignity, and courage and we miss her terribly. To everyone who participated in her fundraiser – I cannot thank you enough for making this time just an ounce easier for her family. Abri: fly high baby girl, we're watching #FuckAML
I am closing with a homework assignment, which is to read these two NYT pieces – the first is written by a Stanford neurosurgeon who recently died of lung cancer at 37 and the second is written by his widow, who is also a Stanford physician. In the first article there is a reference to a quote that really encompasses this admission for me – “I can’t go on. I’ll go on.”