Day +100: Reasons I missed the month of December

I’ve been in the hospital since before Thanksgiving. Surprised? Me too!

Before I start – I have been very sick but I am still in remission!! The cancer treatment can take longer to heal from than the cancer itself.

I’m now going to write about a month that I apparently participated in. I remember bits and pieces, but a lot of this is second-hand. This has been the most difficult period of my treatment (and to be honest, my life). It has taken me a few weeks to even try to put this into words because I am sure that I will not be able to convey the experience as accurately as I want to.

I was admitted near the end of November for dehydration/low counts – not really a big deal. It wasn’t getting better so we did an endoscopy and found Stage 4 Graft vs. Host Disease in my gut. Stage 4 is the highest stage. Ugh.

Graft vs. Host Disease is truly 10/10 misery. A lot of pain, nausea, puking, etc. But it’s really a 10/10. For the first time the thought crossed my mind that I could not handle this. I want to re-scale all of my past pain rankings and give the ovary an 8 and the typhlitis and mouth sores 7’s. I did not respond to the steroids usually used to treat GVHD so it was pretty much the whole month of December before we found something that worked. During this time one of the meds I was on made me extremely confused and it took some time to figure out which it was and take me off of it. My first real lucid memories since before the hospital begin the week of Christmas.

But wait, there’s more! During this period of GVHD my central line broke yet again and needed to be replaced surgically. There was an error in the surgery and the new central line malfunctioned and ended up dumping all of my meds and fluids into my chest cavity instead of my veins. Eventually, I couldn’t breathe due to all of the fluid. It appeared to be an anaphylactic reaction so I was stabbed with an epi pen, then another, then another. They weren’t working (duh) and I was rushed to the ICU. I ended up intubated and sedated with tubes put into my chest to drain FIVE LITERS of fluid from my chest cavity.

When I got back to the oncology floor, I had lost all of my strength and even fine motor skills. I still had chest tubes, an NG tube in my face to drain my stomach, and I’m attached to an IV pole, so a trip to even the bathroom was a major ordeal.

In the last week or so we have finally been able to get the GVHD under control. I am getting stronger every day and have gone from not being able to move my legs to taking my first steps all over again. It occurred to me the other day that I am essentially doing preschool right now –  learning to walk and use a pen and gaining fine motor skills from coloring books.

IMG_0032-2  coloring + NG (face) tube so cute

As far as this all affects the future – I can’t eat for awhile (and haven’t since I was admitted), my time being immunosuppressed will be longer (not sure if I will make fall quarter), I am no longer doing any more chemo (yay!!! the GVH actually has an anti-leukemia effect that means I don’t need it), I will likely be in the hospital through the rest of January.

Oh yeah also today is Day +100 which is supposed to be a big deal so…that’s cool. I have survived due to my body dragging me here and through no willpower of my own. Goodbye 2015.


3 thoughts on “Day +100: Reasons I missed the month of December

Add yours

  1. Hey Brooke,

    Thank you so much for sharing your updates with us. I lived with Saige this summer in SF, and I’m completely blown away by how strong and positive you’ve been in the months since you’ve been diagnosed. Please keep writing- I’m praying and thinking about you, and I hope I get to meet you someday soon. Good luck with your treatments, and stay strong!

    Stanford senior


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