Reset! Day -28 (Maybe?)

The last week has been a super hella challenge and I’ve been trying my best to just make it through. I’m sorry for not giving more updates, but there wasn’t too much to update until today- mostly just lots of being sick and waiting for answers.

After returning from the hospital, I mostly just stayed in bed all week last week. I continued taking my clindamycin, in addition to the zofran and gravol. It helped with the nausea and vomiting- but I honestly didn’t feel like I was getting better. Towards the weekend, I felt like I was getting worse, but in a different way than with a cold. I couldn’t really explain it. I was exhausted, I felt confused. I kept tripping over my words, and misspeaking. My husband raised an eyebrow at me more than a few times, when it was obvious something had come out of my mouth that made little sense.

I wasn’t able to eat, I had zero feelings of hunger, and I also wasn’t able to go to the bathroom, no matter how many over the counter treatments I took. It was very uncomfortable. I developed night sweats and my body felt shaky and tired. I started to develop a cough much deeper than before and I felt very out of breath. My heart felt like it was pumping so hard, and I could hear it in my ears when I was trying to sleep. Something was off and I knew it but I couldn’t put my finger on it.

On Sunday I went to the second support event, this one my family had hosted for me and it was a little bit closer to home. I was able to see my grandparents and great aunts and such, and see so many friends and family, which was such a wonderful experience. I wasn’t really feeling up to going, but I’m very glad I went, I felt truly loved and I truly appreciated all the time and effort everyone had put into making sure I had all the emotional and financial support I needed for this journey.

When we got home from the event, Bill and I climbed into the shower together, and he said “What’s up with that rash on your back?”

Sunday was the first time I’d really gotten out of bed for more than an hour or two all week. I’d been sleeping in pyjamas because I was so cold, and I had been showering alone during the day while Bill was at work. Shit, How long had it been there for?

When we got out of the shower I inspected it, It looked a little like a neutropenic rash I had experienced before, so I didn’t really think too much of it at first. I tried googling things, probably the worst thing ever to do, and decided it would be best to let a real doctor tell me what was going on.

On Monday after Bill got home from work, we returned to the Condo, where I will be staying pretty much full time until my next transplant date, which is now tentatively scheduled for April 18th. I was starting to feel really shitty, and my rash was out of control. It was starting to look a little bit like measles or chicken pox and it was suddenly extremely itchy. I was starting to panic.

The next morning I called my Hematologists office and asked for an urgent consult due to the rash and continuing illness. They at first referred me to my dentist who prescribed me the antibiotic as it sounded to the nurse like an allergic reaction. (I cursed myself silently for already taking my dose of antibiotics that morning before calling her! Why hadn’t I considered that!?) I was seeing my dentist that day anyways, so I went to see him for a check on my teeth which went great. They were able to save the second tooth, so once my transplant is finished they will reface it with a nice cap. He took a look at my rash and said it looked like an allergic reaction to him, but that I should really see my doctor to confirm and have it entered into my records.

I called the nursing line back and explained what the dentist had said, and that since my transplant was delayed, I still needed to see my original Hematologist one more time to check my counts as a buffer. The nurse was unaware my transplant date had changed, and once she understood was able to accommodate me for an appointment today.

Today they were able to confirm that I do have a suspected allergy to Clindamycin and that the reason I’ve been feeling so shitty ALL WEEK was because of the drug allergy. It is likely the reason I ended up in the hospital the first day after taking them with vomiting, but the zofran and gravol kept my stomach quiet enough to tolerate it much longer than I should have been taking them, which resulted in the rash, trouble breathing and a bit of fluid in the lungs. If I had continued to take the last few days, I could have ended up with a much more severe response- including anaphylaxis. If you ever experience something similar, please see a doctor straight away! All of the symptoms should hopefully get better now that I have stopped taking them.

It’s definitely a concern of mine, since I already have two suspected drug allergies, and this adds a third. When you’re about to enter into a treatment that leaves you with no immune system and relying heavily on drugs for survival, eliminating major drugs can be a huge complication.

I’m feeling much better today physically for the first time in over a week. I can finally eat again, which is nice. I lost 9 pounds in the last week because I completely lost all sense of hunger. I’m sure I’ll put it all back on again before the transplant eating the delicious desserts from the cafe they just opened beneath the condo. Yes , you read that correctly. There is a massive dessert cafe beneath my condo in Toronto, in case you needed any further reasons to visit me. Did I mention they have three flavours of chocolate fountains that they will dip your slice of cake in? ??‍♀️