Trial 2 update

 I was really hoping that I would be updating everyone to say that I’m home and things weren’t as bad as the doctors said they’d be. Unfortunately it was pretty awful. I have had constant fevers, with periods of Tylenol induced reprieve, from Monday afternoon through early this (Thursday) morning. With some of these fever spikes I would get rigours, which the nurses here affectionately call the “shake n bake”. You start by feeling a bit chilled which quickly progresses to shivering and then to violent shaking… it’s a trip. Luckily they can calm it quickly with some demerol. I also have a mystery rash that feels and looks like a sunburn and then over night last night I developed a mouthful of sores. The mouth seems similar to the mucositis I’ve had previously… but the combination of symptoms along with low platelets is making the doctors nervous… so a Wednesday discharge has turned into a “hopefully Friday” discharge. 

Overall, I’m feeling much better today, mouth soreness aside. I have more energy (could be the prednisone they decided to give me today) and haven’t had a fever since 6:30am. I’ve done some laps of the unit which felt like a big deal because I wasn’t able to get out of bed for almost 2 days. I’m hoping to start to clear some of the fluid I’ve gained this week. I’m basically up 6kg since Monday so to say “I’m bloated” is an understatement.


I know that seems to read like a laundry list of yuk… and I’m not meaning to be a downer… it’s just been a really hard week. Probably one of the worst weeks of side effects I’ve experienced.


Poor Ian has now made the drive here two days in a row to pick me up, only to find out that I wasn’t leaving. The kids are now coming home from school asking “Is mom home today?” So the cancer-mom guilt is also hitting hard. If I’m being honest… I’ve had a couple good pity party crying episodes the past two days but it was also kinda hard to just have a good cry when your roommate and their family are 6 feet away and doctors and nurses are coming in like a revolving door. Although my clinical trial nurse, that I deal with predominantly, was with me for one crying episode, as I was shaking violently and Ian was holding my legs down to try and help stop the shaking. I apologized for being emotional and she basically said that I have every right to cry right now because this sucks … which I appreciated. Because it did really suck.


Saying that, I’m thankful that everyone is being SO attentive. The care I have received is incredible and everyone is so kind. Even the guy who comes in to deal with the garbage etc, asks me how I’m doing (by name) and if he can get me anything. So if I have to do this… I’m really glad Im doing it here!


I will sign off now as I receive my evening IV Benedryl in hopes of knocking me out. Hopefully I can update you with a quick “I’m home!!!” tomorrow. Take care everyone and have a very Merry Christmas (or holiday season if you don’t celebrate Christmas) and a Happy New Year.


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