This part was the worst thing ever. Before I went in for transplant I was obviously terrified so I read a lot of other people’s blogs and there were two in particular which I referred back to over and over while I was laying in my bed trying to remember that the pain wouldn’t last forever and feeling anxiety about whether my kim kardashian hollywood fake boyfriend would break up with me if I didn’t play for a few days (I risked it and he didn’t).
The first was a blog written by a guy named Austin in Boston. Weirdly, he had the same rare chromosomal subtype that I have (Philadelphia positive) except in ALL instead of AML. His blog is really cool and relatable especially since he was 23 when he was diagnosed. His writing is really good at capturing physical experiences so here are some quotes that I found especially relatable:
“My bones feel like they have angry little creatures living inside them and they want out. I can only imagine this is how you feel when you regain consciousness after being hit by a bus. The pain and side effects (mostly more mucositis and mouth sores) should continue to get worse through ~ day +10 as the cells graft to my bones.”
“After spending so much time in the hospital you expect a wave of relief when you get to go home – and while I was relieved, it didn’t last. As much as I was angry at the cancer for forcing me to confront my mortality before I planned on it, being home it forced me to evaluate what I really have left in my life. what if I don’t die? What life do I have to pick back up? Now that I’m 23 and most likely infertile I can tell you how much I’ve always wanted a little girl… I hate this cancer for forcing me, at 23-years-old, to miss the daughter I may never have.”
Austin relapsed after his transplant and died. His blog is at http://www.thisisaurl.com/ if you want to read more.
The second and most repetitive thing that ran over and over in my head was written by the mom of a patient here at CHO. His name is Bay and he is 9. He had relapsed AML and underwent 2 consecutive stem cell transplants (!!) after his first failed to engraft. His transplant happened on September 23, 2014 – one year and one day before mine. The day before my transplant I looked at his mom’s facebook page and saw a beautiful picture of him celebrating his first “re-birthday” (https://www.facebook.com/photo.php?fbid=10208107742240894&set=a.3435724621446.2160192.1520371947&type=3&fref=nf).
Anyway, the quote that ran over and over in my head was posted during his transplant: “He keeps saying ‘I feel like I’m dying.’ I tell him ‘this is what it feels like to be getting better.’ One day at a time.”
30 ‘one days’ later, I am looking toward discharge much earlier than expected (perhaps even Monday?). Leaving the hospital is scary. After 4 1/2 months of almost exclusively inpatient treatment, I have a whole new task ahead of me in the outpatient world. Meds, clinic visits, trying to live in the outside world without an immune system, leaving my lil baby cancer friends and the families, doctors, and nurses who have pulled me through the scariest, most intense moments of my life.
One of my strongest memories from this experience comes from my first admission. When I was admitted, my blood was 89% cancer and I had both pneumonia and RSV while doing my first round of chemo. My hair was falling out, I had constant fevers, I could barely remember my name. Taking a shower was so difficult that I would need at least 2 hours to rest afterward. When I fell asleep, my stats would fall even while I was on oxygen. The dry oxygen mask irritated my throat and had me practically coughing up a lung but the humidified mask made me feel like I was drowning. I remember laying in my bed for days, afraid to sleep because I was terrified someone would miss the monitor beeping and I wouldn’t wake up. I cried every time I woke up from anesthesia because I imagined that the absence in my consciousness from the surgery was what it would feel like when I died. I remember wondering how I would ever leave this place and trust my body to carry me through a night without constant vital checks and someone watching me sleep.
Last week, the doctors cancelled my 4 AM vitals. For 4 months I have had my vitals taken every 4 hours – I never slept longer than 3 hours at a time and in a way I was grateful for it. But now I feel ready. I trust my body and I am so excited to see my skin heal, my strength return, my hair grow back, my central line removed (2 more months), my body become my own. I want to climb Machu Picchu – I have been sick almost a year now (6 months of that undiagnosed) and I want to be strong enough to spend 4 days hiking. Most of all, I hope I will have the chance to see the incredible anxiety that surrounds relapse gradually fade until I am 2 years out and considered low risk for relapse. I am acutely aware that my risk of relapse is extremely high and this may not happen for me.
As I type this I am holding an 18 month baby named Abri on my lap. We were admitted 3 days apart from each other – both with high risk AML. Abri and her mama make my days so much better and we have many shared hobbies including frozen bowling, sticking our tongues out, and being exasperated with chemo. Abri’s AML is relapsed and she still has a long inpatient road ahead of her – more chemo and a stem cell transplant included. She is far from her home in Nevada and her family travels 4-5 hours each visit.
This is how we feel about chemo
^She stole my hat
Please consider donating to Abri’s journey here: https://www.gofundme.com/x8wx6pg8. Here is a message from Abri: f ppom m n
Anyway, I am going home soon and I know that many of these stories end in a relapse. I am scared. I am also honored to have survived AML once, to have confronted my mortality and to leave the hospital in remission and having endured ~115 days of hospitalization, 3 rounds of chemo, 5 major infections, and a stem cell transplant.