About three weeks ago we felt our village come together to support us in our pursuit of the trial offered by UW Wisconsin. My friend Amanda drove, and we had a generally lovely experience of road-tripping, and hotel-staying, and endless chatting about our decade (+) long friendship. I even learned they have draft Gatorade at Taco Bell!
The day of tests at Madison started off a little grueling but fine – 3 full hours of eye tests and images where everyone commented on my super bad vision (yeah, I know guys). Followed by blood tests and an EKG (I think). And then being propped up in a doctor’s office to wait. He apparently couldn’t be found. My appointment wasn’t on his calendar. I sat alone in that room for 2 hours, drifting in and out of sleep imagining all my future Madison visits and how this trial was going to give me some time back.
When he finally arrived apologetically at 4pm, I was ready
to talk about next steps. He was not ready.
The blood texts from that morning had eliminated me from the
trial. Likely from any trial. There are a lot of problems in my gut, but a major
one is bilirubin, and mine is sky high.
“So what now?” I asked. “I just go home?”
“Yes. We don’t have anything else to offer you.”
I didn’t cry, but I certainly felt a piece of my self snap off inside, that little piece that I had been allowing to hold hope, to hold positivity, that little part of me that saw Ruth and I on Kayaks this summer, and me reaching my 40th birthday – even if not much longer.
He also gave me what was an obvious Hail Mary, which I don’t
think he or I believed. I could go get
an MRI in Chicago, see if there was any way to stop that bilirubin up
surgically, and bring down the numbers. So an MRI was scheduled, and I spent
another day at the hospital getting rock-tumbled. And, to no ones surprise,
there is no quick fix. This is is.
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Shortly after the results of the MRI test came back Ruth and
I had a sad chat with my doctor in which he confirmed there are no further
treatment options and referred me to hospice. His guess by the state of my
liver and other fighting organs that I have weeks to live. MAAAAAAYBe months, but
that would be pushing it.
Each day I get weaker, sicker and standard things become my more
difficult to do. I cant eat much at all -current success with gatorade, chocolate boost,
and Keifer yogurt and 4% large curd cottage cheese. My body is swollen in weird
ways so my clothes don’t fit (again), and the pain is pretty constant no matter
the current regiment. We hope hospice will help with this.
Thank you to everyone who pulled out their wallets to help us. This money may not be used for trips to Madison, but it will be used for food, help at home when we need it, and eventually funeral expenses. Believe you me, we are sorry its working out this way, too.
I don’t want to stop the blog entirely, but we will see how my
energy levels go in the coming weeks. Thank you all for your love and support.
xoxo
JD, RD, EtC
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