I’m supposed to be in California right now, visiting friends, and instead I’m in a hospital bed. It’s been an extremely weird week all around, personally and California-wise, with the shooting tragedy and the terrible wildfires. I wanted a last-minute getaway when I booked my flight, and I couldn’t shake a gut feeling that I shouldn’t stay here this weekend.

However, as I joked to friends on Friday, my guts were increasingly unreliable because of antibiotics. On Thursday, after feeling increasingly short of breath, I called MSKCC. I’ve had this feeling before. Sometimes I feel as if I’m coming down with something and I’ll fight it off only to get mild pneumonia. I asked if I should go to CityMD or another doctor, and they advised coming to urgent care here. After some tests revealed mild pneumonia, I was given antibiotics. I felt increasingly upset in my digestive tract, but I thought it was just normal antibiotic side effects. I woke up at 3 am on Saturday, however, and called the on-call doctor, who advised I cancel my trip and go to urgent care again. Instead of taking a cab to the airport, I took one to the hospital, where I’ve been since.

After being evaluated in urgent care, I was put in the Clinical Decision Unit for 24 hours for hydration and to see if I should be admitted. My room had a light that mimicked a window that reminded me of the “Fifteen Million Merits” episode of Black Mirror. I really loved the way it seemed like it was daylight, but when I woke up in the middle of the night and was convinced it was morning, I finally had to shut it off.

I had a scan this morning that shows some inflammation. The tumors don’t seem to have increased so that’s encouraging. I have been terrified that the PRRT has stopped working. I am still worried that my symptoms have come back for good. I’m not ready for that. I’ll never be ready, but I thought I had more time. I’ve been a bit quiet during this hospital stay. It’s brought up a lot of past things, like the anger and sadness I felt when they asked me who takes care of me at home. The last time I was here, I was unknowingly a few weeks away from being left. I had to fill out a new form. I ultimately put my mom’s name, but I took comfort in that I could have put so many names down as people who would care for me for a bit.

The past can’t hurt me so much if I don’t let it. It’s the future that I’m worried about. This is physically a taste of the past and what awaits me once this current treatment wears off. I thought I had at least another six to eight months of wellness. I don’t want this. I’m grateful for these five months I’ve had on my terms but I’m not quite ready to begin dying again.

I hope I can improve to get out of here. I’m on the BRATT diet, so my food choices are limited to breads, plain pasta, plain rice, Egg Beaters, egg whites, and potatoes five ways. A friend helped me create a hack with soy milk and peanut butter to create a peanut sauce for my pasta. I amused myself today by ordering both the Boiled Skinless Potato and Skinless Boiled Potato. (Some say there’s might be a difference as to when the skin is removed. It looks the same to me and they tasted better than I thought. I want to believe they needed to make the menu choices symmetrical and this was the solution.) I hope I can get better. I still have more living to do.

 

Comments

  1. Stephen says:

    You are a great inspiration, words would never do proper justice. Rewind time and you would find me desperately clinging to your writings for hope and insight on what was in front of me. I would be remiss to not say thank you for being the light on my path. I was diagnosed with Hodgkins shortly after you and found myself reading this blog to have a glimpse into my future. You had been diagnosed before me so I felt like your story was giving me the truth on what was ahead of me. I could never appreciate you enough. I can only hope the best for you… But years have passed and I continue to check in on you. I am shy and and don’t say much often but I wanted to let you know how profound of an impact you have had on my me.

    • apainintheneck says:

      I just saw this! Thank you so much for your kind words! It means so much that I could have helped someone. I hope you’re doing well and in good health.

  2. Scooter Yerow says:

    Josie! This is my first time reading your blog. You are really inspiring! Just the fact that you are writing and sharing your anguish and your triumphs is such a good deed for humanity. You were a really bright light in Cuba, and i wish I had engaged with you more. Sending you big love, with a big helping of courage and fortitude.

    • apainintheneck says:

      Aw, thank you! I am so glad we got to hang out in Cuba! Come to New York! 🙂 Hopefully I’ll see you and the crew soon!

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