On Wednesday (May 1) I went for my weekly clinic appointment with Dr. Bixby and my trial appointment where they draw my blood and do an EKG immediately prior to me taking my study drug. At the appointment with Dr. Bixby we discussed some of my new side effects which included mouth sores, the overall body aches, and an increased frequency and urgency with going to the bathroom. When i described the last symptom they decided they wanted to test me for c-diff infection and gave me a kit to take home and bring back to the lab on Friday.
On Thursday I was in pretty bad shape, slept most of the day before we went out for food. Alan was craving coffee and donuts so we went to Krispy Kreme where I could only eat half my donut. I was craving tacos so we went to this new place in Troy and I couldnt even finish one taco. Dont get me wrong, the tacos were good my appetite was just bad. Once we got home I started feeling chilled and when we took my temperature around 7:45pm it was 101.7 so we got started packing up to go to the ER.
We decided to make the drive all the way to Ann Arbor, and by calling ahead to the leukemia on call doctor I was already pre-admitted to the ER and got put in an ER room pretty quickly. They got me started on fluids, antibiotics, magnesium, potassium pretty quickly. Drew blood cultures and took other samples and the c-diff which is a GI infection came back positive.
I finally got admitted to a room at 5pm Friday, after 20 hrs in the ER. Alan had slept in the car part of Thursday night and I finally sent him home at like 10am Friday. Once I was admitted he came back to bring my stuff, but my actual room wasnt much bigger than the ER room so he wasnt able to stay.
Now today is Tuesday so including the night in the ER I've been here 5 nights. They are talking about possibly sending me home today, but I'm still hitting the bathroom about 8x per day so I'm not sure how i feel about that. I've also still been getting low grade 99.x fevers every night around 7 or 8pm despite being on antibiotics. Dr. Bixby has paused my clinical trial meds until I'm no longer fevering, so that's freaking me out too as I've now skipped 5 days of them.
Today I talked to Heather, the PA for Dr. Bixby and she said they've talked to the study sponsor about my infection and now they want me off the drug until the biopsy results come back, so at least another week. I'm so nervous about what this could mean for my disease progression during this time.
Oh and my hair finally started falling out on Friday. It's been tingling for a while but Friday was the first day I ran my hand through it and came away with a handful. All my showers while I've been here have resulted in a huge amount of hair loss and my pillows are covered in hair too. Alan is coming today and bringing the hair clippers so I can just shave it.
Back before I started the trial I requested free hotels through the American Cancer Society for Tuesday and Wednesday night so we could potentially not have to make the early morning drives and not have to drive back again Thursday for transfusions and other stuff. This is the first week it worked out that they were able to find a hotel to fulfill the request so Alan is able to stay in a nearby hotel for the next 2 nights if I'm still inpatient or if I get discharged today we will still stay there since I'll have my appointments tomorrow. This is helpful since my room is not good for having him sleep here but now he can visit me without driving back and forth.
No comments:
Post a Comment