The Last Six Months: An Update, A Story, A Truth
Hello, all. Yes, I am back. So before you hit unsubscribe for lack of updates, I bought a new laptop and fired it up. Today is December 14, 2023, and I am alive. I am going to share with you what I wrote last, in June, as I was preparing myself to receive the immune therapy, which is part of the conditioning before the donor’s cells are transfused. Meaning: conditioning is a shit ton of chemotherapy in a short amount of time. This writing was never shared because I ended up in the ICU and couldn’t send it out. So here it is: the beginning of the end of the transplant process for me. I couldn’t stop crying as I read it but I think it’s important to have. So here we go, back to the hot sticky days of summer on the Upper East Side of Manhattan at Sloan-Kettering Hospital. I wonder who my suitemates were. I wonder if they are still alive today.
Good morning. It’s Thursday, June 22 and I’m coming to you live from the transplant floor at Sloan. I began writing this newsletter at 4:56 am.
It’s hard to believe that I have begun the transplant process. This is day 6 and I’ve taken two doses of the drug that has made this trial unique and novel. But MAN, they kicked my ass good to the point where I developed pneumonia immediately. The first few days they had me lifeless and unthinking, watching VPR and not eating much. I began to perk up around day 4 or 5 when my cousin visited. Day 5 saw me hanging in my room, eating pizza with my cousins and brother, laughing, walking, and feeling alive.
But day 6 has bothered me so far. Yes, it’s 6:30 in the morning on day 6 but I woke up, bothered, itchy, and lonely. I tried to write around 5 am but I could not. My brain couldn’t connect with the keyboard; I couldn’t sleep and so I walked the floors in a loop, partly so the nurse would inform the therapy teams I was up and walking. But the IV pole was heavy and it was hard to manage. It made me feel alone because I had no one else to push for me, no little boy with red hair to name the pole something silly like a banana peel. I miss Leo Bergin and my dog so much. I have never realized how lonely walking with a Banana Peel could be.
My face is wet with tears and I’m realizing that I need to pull myself together before they stick a Post-It on my chart labeling me crazy, It’s almost 7 am and people will fill my room and then empty it and I won’t remember a damn thing they say, so I will put my mom on speaker phone so she can jot it down.
But maybe the truth is that I have been dreaming of missing a PT or OT sesh and laying in bed thinking of nothing instead. Except it’s never nothing. Somehow in the twisted, stressed essence of my brain in deep sleep, the missing of a class leads to an actual obsession, over the fact that this could KILL me, and soon. I’m not distracted by what I learn so my mind floats to these awful intrusive thoughts. And so I awake to this: death! Yikes! Death? Like, in a few days! It may be time’s up. I find it odd that I’m so freaked out since I’ve known for years that this was a possibility. I knew that every ICU admission came with the floating, unspoken, unwhispered word that death just might be near. I remember my many bouts with malignant hypertension and the one time they called a code blue as my head pounded, I vomited, and my pressure skyrocketed past 210/150. I whispered to my mom, a childlike ask at 34: am I dying? Tears pooled in her eyes as she whispered no and stepped aside to let the doctors get an arterial line and instruct my father to get to the Clinical Center ASAP.
In these moments I’m aware that yes, my disease will get the best of me, probably sooner than I'd like, and yeah, no one likes that they may soon say Sayonara to Kelly. Shit, I don’t like it either. And I promise, I’m not being negative, I just have a good memory of every time my body tried to kill me and I’ve lost count.
The bone marrow transplant, while bringing with it amazing, glorious hope and promise, also brings risk, isolation, pain, and a long recovery. There’s no way my Ford Pinto of a body is going to have zero issues with the drugs; it already has. I’ve already been scanned, cultured and tested a ton of times! It’s odd, knowing mortality could be so close, and also freeing. I’m buying shit I don’t need. I’m buying shit the kids don’t need. I’m finding solace in imagining them in the outfits I got them in pictures, perhaps wearing them as they climb a boulder in Central Park while I sit bald on a bench with a mask, so happy to see them again; in this imagined photo, all I can do is smile.
I am doing this transplant because the life I live now is not what I want and it’s not what I deserve. I am hoping that this transplant gives me the youthful vigor I haven’t had since I was 11 and puberty hit and my genes lit up with disease for the most serious of times until then; the freedom that comes with pain relief, a freedom that has eluded me entirely for the last 10 or so years; the ability to lift my luggage into the overhead bin so I can travel again; the time to date, to marry, to work, to have a child. I have sacrificed my fertility and a little bit of my sanity; my parents and siblings have sacrificed much as well. I am not alone in this disease hurting mentally.
I know life is more than hospitalizations and walking the dog… I know for me life is spent on the road, writing, connecting, exploring my queerness, guiding the kids, and finding joy in the everyday. I am so scared. On mornings like this, I am so alone; on nights like the last few, I’m surrounded by my cousins' teasing and laughter. I am also surrounded by a special, specific, helpful kind of love when my parents are here. But this experience will only be felt physically and mentally by me. And I’m so tired and scared.
But I’m ready to fight.
So let’s effing go.
As you well know, we did not effing go. I woke up a few days later in the neurological ICU; I had no idea what the kids names were. I thought it was December and I thought it would soon be my birthday. (My birthday is in February!). I scared the shit out of my family and friends. Everyone was waiting for me to come to. And when I did, I thought I was at my hometown hospital and I was looking for my mom. I waited 3 hours until it was 8am and I called her. I will never forget the relief in her voice; the sound of a deep breath finally being let out. It brings me to tears even thinking of that sound.
My doctors came in and informed me that the schedule would have us starting chemo tomorrow. But my main doctor shook her head no. She didn’t think I’d survive it. The founder of the study, who had a lot riding on me, tried to encourage us that I would be okay. But I trusted my main doctor, who had spent a nearly year studying every inch of my body. And so we left Sloan. As soon as we said that we agreed with Dr. T and that we didn’t think I’d survive chemo, everyone heaved out a similar deep breath. I had become a friend to some of these doctors and no one wanted to see me die an ugly death.
I came home and have been mostly asleep since, but that’s a story for next week. I ended up at NIH, my bone marrow hollowed out by the ATG (immune therapy). My hemoglobin was so low, I shouldn’t have been able to walk. I had two blood transfusions and a bone marrow biopsy so I will write with the results when they all come in. Hopefully, it’s just a virus.
Mentally I am crying more than I ever have before. I’ve spent the last 2 weeks in my parents’ house because I’m so lonely, I break down into sobs when I move back over there. Today I called my dad an hour after he moved me back into the apartment and he came and moved me back into my brother’s old room. Things are so upside down and backwards. I don’t recognize my life without the hope of a bone marrow transplant. There’s nothing in the pipeline, nothing I can point to and say hey, maybe that will work.
The good days are few but I am documenting each one on Instagram. I am living day by day. That’s all I can do.
More next week. Love you all.
And now 2024 has begun. What a crappy ending to the year. I had a bone marrow biopsy, blood transfusions, hospitalizations, and more times throwing up into a bowl than I can possibly count. It seems I get a few days off here and there and then the vomiting returns. I cannot stop it. I cannot calm myself down to breathe enough, to disentangle my normal brain from the barrage of negative, nasty, scary, intrusive thoughts. The kids went to Disney without me, a trip we’d be planning for years and it absolutely shattered my heart. But my sister pointed out that if I was vomiting on the trip, I’d ruin their vacation too. And she was right. But I was angry and sad and I was told to get over it so many times that I held on even more.
The ATG drug given to me at Sloan seems to have finally left my body. I am still having liver issues and so I am scheduled for a transjugular liver biopsy for this month at the NIH. The NIH is back to being my full-time physician. I cling to them and they don’t grease the pole and leave me flying away. Speaking of which, my parents have also been of great help. My mother’s 40 years as a nurse has been so immensely helpful. She knows when to go inpatient and when we can ride it out at home. She manages the malignant hypertension and she provides a safe space.
What’s next? I am trying to get an appointment at a gastric motility clinic in New York City so that they can schedule one of two surgeries. There’s one option which features placing a gastric pacemaker into my stomach to reawaken the nerves that have been paralyzed by the neuropathy caused by diabetes. Then there’s the G-POEM which involves cutting a stomach muscle to give my body more time to digest food before I throw it up. None seem like a walk in the park for me and lately the vomiting has truly gotten to my mood. I’ve considered stopping all treatment and going on hospice but I’m not really there yet. And I don’t want to die.
Speaking of which, I have quit almost all my painkillers. I cannot underscore the damage the Fentanyl did to me: not only to my memory but to my social life as well! I was triggering for a lot of friends who have lost those close to them to opiate addiction and I couldn’t be more sorry. I was, at times, taking more than prescribed and I was on the slippiest of slopes. I really could have gone somewhere bad. I have been on 10mg of Oxycodone 2-5 times a day since jeez, I don’t know…maybe 2013. I am now on 0-1 dose a day. Usually 0. I was forgetting so much. I still am. I feel brain-damaged. I feel so immensely hurt by the friends who I don’t blame for leaving me but I am heartbroken. I am heartbroken that this is my life.
But this is why I don’t want to go to hospice. I’m not done fighting. As my late hero Lyon Herron said, for years, until heaven finally was, “Heaven ain’t ready.” I don’t think heaven is ready for me. I’ve taken up cooking walking and yoga again. I am spending the good days with the kids and my siblings. I am walking in the warmth of my parents' love and support.
Heaven ain’t ready-late fighter Lyon Herron
Thank you all for listening. Love, Kelly Bergin