An Honest Update
It’s March 13. It is sixty degrees and the lionly weather has turned gentle and warm, like a lamb licking your face. It is March and I’m okay. Today marks 8 weeks without vomiting.
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January 10, 2024
I still have good moments and good days. How do you decide when it’s enough pain and suffering?
I have been considering this a lot lately. I wonder if it’s something you know, like when you develop feelings for someone you’ve always considered benign, suddenly and strongly.
For the last few months, I have been vomiting more days than not. The strong will of delayed stomach digestion has confronted me often; sometimes I am fine all day and then a soda I drank for low blood sugar comes back up. I’ve lost track of the foods I like that I can still eat and haven’t seen in reverse. I’m sorry, I know it’s gross. But imagine fighting the stomach flu every week. I can’t plan dinners or dates; I forget what it’s like to socialize with friends because the only people I see are my parents, sister, brother-in-law, and nieces and nephew. Rachel has been in town for weeks and I haven’t been able to see her because this paralysis paralyzes me: this particular piece of my overall shit health is called gastroparesis and it’s ruining my life.
It begins with my body being overtaken by insane high blood pressure and a blinding headache, accompanied by a loud pounding of my heartbeat in my ears. 210/150 isn’t an uncommon number on my automated blood pressure machine. I break out the high blood pressure meds and I call my mom to ask her what to take. She’s also damaged by this new stage of disease; I see the stress unspool in her shaking hands as she takes my pressure manually. We work with the number and pray my food stays down. But when it’s very high, the food doesn’t stay down; another round of hourly vomiting begins. She begs me to let her call 911 or to bring me to the hospital, but I promise I’ll get better when the meds kick in.
At first, I believed I could track the vomiting episodes, like I tracked my period, on an app where it made sense. But it doesn’t compute. I can be vomit-free for 4 days or 24 hours; I am never far from my head in a bowl.
The unknown scares me. I was spending more time in the city but now I’m afraid a vomiting episode’ll strike me, so I don’t get on the train. I don’t spend time where I feel happiest and most at home.
My walks have stopped. Pete is getting fatter from the lack of movement, but he refuses to leave my side when I am sick.
My disease is threatening everything. It has taken my peace, my joy, my stability, my walks, my social life, my parents’ mental health, and my ability to eat and drink.
I have never felt more like a hostage to my diseases than I do right now. I want to give up, to stop all my meds and let the disease take me. I don’t think I’d qualify for state-assisted patient suicide; a death from this genetic mutation will not be dignified.
It scares me that I’m looking into this; that I know what’s legal in New Jersey. That I know what hospice would look like. I have spent years researching my death from this genetic mutation because I am told often that my life is at risk, that many patients die as children. And I was always so game to fight back, but this last year has muffled my fight. It has finally worn me down. And I’m scared.
I’ve got to go. I can’t sit up and type. I’ll try to come back to this newsletter soon. I’ll try to find my fight again. I’ll try to keep going. I love you.
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March 2024
My bone marrow transplant failed at the end of June 2023. The vomiting started soon after, but it wasn’t every week until the fall of ‘23.
I couldn’t write, I couldn’t look at my phone. I was spiraling. I was finally giving up.
It was okay to feel like this. I’ve earned giving up! I have been through more than almost everyone I know. I have been sick since I was born. I have so many traumas settled into my skin and it felt like I was finally digging them up, examining them, and realizing they were too vast to conquer.
I’d always been proud of my survival but now I was wishing I didn’t survive that ICU admission at Sloan Kettering or all the ICU admissions before that; I kept remembering the really bad ones, the one at NIH where I was certain a nurse was torturing me via arterial blood sticks every hour.
I was vomiting every 10 minutes six days a week. I wasn’t sleeping, at all.
It was not an existence worth sustaining, and we all knew this. And the wrinkles on my mother’s face deepened, and I had to teach my dad how to breathe through the anxiety that this reality was triggering.
I didn’t know how to feel, because this part is not often discussed in gray matters like this. It’s the rare doctor who tells you it’s time to let go when your death is perhaps not imminent but your quality of life has whittled down to nothing; the good doctors know, but most push treatment till the very end. Losing a patient is distressing, and doctors are human like the rest of us.
My mission statement has always been to keep going, to pay attention, to seek joy. And I was paying attention, and the pain and sickness were bigger than any beauty I could find.
Toward the middle of January, I felt ready to look into palliative care. My mom was aghast but I’d looked at my past, read every journal article on my disease, and I didn’t see a solution. This seemed to be untreatable; I’d been to so many doctors, tried so many medicines, and failed on everything. The one curative treatment for my underlying genetic mutation had failed at Sloan Kettering, and now this disease caused by the mutation was sinking me. I was ready to wave the white flag.
And then one day, I didn’t vomit. My diabetes stabilized with a new insulin pump, and my blood pressure calmed down.
The first day that I didn’t vomit was a Tuesday. A rep from Medtronic came to help me set up my new insulin pump, the so-called artificial pancreas; it’s a pump that operates on auto mode, treating your high blood sugars without prompting you for permission. It learns from how your sugars react to insulin and then uses that information to adjust its settings. My genetic mutation causes extremely brittle diabetes, so the pump doesn’t work as well for me as other people, but my sugars are in range 65% of the time, which is a vast improvement from what it was before-- 31%. The pump is still learning and I still have a lot of lows, but my high blood sugars have decreased significantly.
Earlier that same day, I saw my doctor and started a higher dose of my blood pressure medication. And they have been stable since then.
I’m not sleeping well, or at all, and my labs are a bit of a mess. I have to go for a transjugular liver biopsy in April. I’ll be inpatient for 4 days down at the NIH. I have a massive amount of skin cancer, I’ve got broken bones in my foot, and my period and its PMDD is back after a years-long hiatus but…I feel lucky right now because I’m not vomiting six days a week.
The difference between now and a few weeks ago is truly astonishing. I’ve spent time in the city, I’ve planned and had a night out with my girlfriends from the neighborhood (ok yes I call them my mom friends), I hosted my best friends and cousins at my house and got to meet my best friend’s baby. I’ve played a ton of basketball with Sadie. Pete and I have taken countless walks and hit personal bests for the longest distance and fastest pace. We go to the dog beach at least three times. We’re losing weight we needed to shed (yes, I am still referring to myself and the dog).
And my family and I mourned the loss of my aunt, who we all loved for her kindness and generosity. We watched my grandmother lose another child and we felt that pain. We held hands wordlessly as we walked behind my grandma and my aunt in the coffin. We buried her in a swampy graveyard. We prayed for peace and we prayed for guidance and we prayed for my grandmother and cousin.
I have found my life to be one of extremes, especially the last 7 years since my disease has continued to progress relentlessly. When I am in the hospital, I am desperate for distraction and so I plan trips that I’m never able to take. I make plans with people and then have to bail. I promise to see my grandma more and then I’m too sick to drive. I book flights to LA and then my liver numbers skyrocket and I cancel my ticket. I save for years for a trip to Disney and then I am unable to go and witness the kids’ experiencing the magic.
I am always looking for ways to engage and live and experience things when I am stuck in bed. But in the last few weeks, I’ve been able to do more and more. And that has saved me.
I am looking forward too. I think I might be able to do some things this summer. I am cautiously optimistic. I haven’t been any kind of optimistic in years, but perhaps I am getting a small reprieve after years of inexorable health. Yes, the liver, and the lymphocytes and the pain and the insomnia are wearing me down like they always have, but I am stronger now mentally. I am allowing myself a small piece of hope to cling to. I am dreaming of days like this to continue.
I wish you all peace, joy, and resilience.