I am still in the hospital and will stay here at minimum through the weekend. Still a lot of pain. The mouth is healing, albeit slowly, but there are a couple new sores in my throat. Those are caused by my second chemo treatment, the one I had last Friday. If you consider the fact that I had at least five times as many sores caused by the first treatment, I’m doing pretty good. I’m not reacting anywhere near the way I reacted the first time.
(Eileen’s son is in the room right now and he is one of those people who eats in such a way that his gums smack and he kind of breathes through each chew as though his mouth is open, but I will not look over to find out if it is. He just licked his all his fingertips; Eileen just scolded him saying, That’s not a lunch, a doughnut, so now I know what food is the culprit in that horrid sound.)
I knew that mucositis was a possibility with this chemo and when I developed it and ended up in the hospital, unable to control the pain, I wondered how I had never heard about how awful it was, given that some people experience it each and every time they have chemo. I mean, I had heard it was terrible but this is beyond any type of pain that I would think could be considered acceptable.
But then I talked to my clinical oncologist and I found out that this is the worst case she has seen in years, if not ever. There was nothing to indicate that I or anyone else on this trial should experience mucositis of this magnitude. If this was common, if it was seen in several patients enrolled in this trial, the trial would come to an end quickly.
It’s more than just ulcers. All the tissues of my mouth and throat are swollen and painful, even where there aren’t sores. Some of the ulcers are more than a centimetre in diameter. It is difficult to swallow, at times nearly impossible.
I am tired of suggestions of ways to eat food. I am tired of offers of food people think I can eat. I apologize to everyone who has asked if they can bring me mashed potatoes, soup, smoothies, popsicles, juice, etc. These offers of help are extremely kind. But when I say I can’t eat, I literally mean I can’t eat, with limited exception.
There are three things I’ve been able to ingest in the last two days. A cream of potato and leek soup that Lauren brought me (by request) that I water down so it is thin enough that I won’t choke when I try to swallow. I had one watered down cupful last night and one the night before. Chai ice cream (also from Lauren, also a request). I was able to eat half a cup last night and half a cup the night before. Finally, Starbucks lattes (also requests). The coffee there is not so strong as to be injurious to my throat and there is enough milk that I can drink them (from a straw, cooled to just above room temperature). All three are quite painful to eat, but I need to eat something, and these are the most reasonably painful of all the painful things to eat. The caffeine in the lattes is a necessity at this point — it is the only thing that cuts through the fog of the drugs, the only thing that allows me to look at the computer screen without seeing double for at least 45 minutes.
But everyone keeps making offers or suggestions and it becomes more and more difficult to graciously decline. Believe me, I have thought of everything, of every possibility. I try small bites or spoonfuls of things to see if I can tolerate the pain that it will cause by eating it, and the pain that will remain after eating it. I asked Colleen to get me some split pea and ham soup from the deli downstairs earlier in the week, and it was delicious and I was able to eat about a third of it, but then I realized the tiny pieces of ham were like thousands of swords stabbing my throat and mouth.
It makes sound kind of ungrateful, kind of a jerk, but please don’t offer to bring me food. Please don’t offer to bring me even the food I’ve listed here. When it comes to food, let me ask you to bring something specific. If I want a latte, I will ask for it. Ditto for watered-down soup and ice cream.
Visits are definitely appreciated over the weekend, though not the unexpected kind. The amazing Eileen is gone for the weekend, and there will be far fewer doctors and nurses visiting me considering the holiday, and so I’m looking at the next three days as Manulife-funded writing retreat. I need to devote blocks of time to simply writing, but in between those blocks, I’d love visitors to come and hang out with me, go out on walks with me, maybe watch a movie, or paint nails, or give me a shoulder massage. See how I slipped that last one in? I can’t eat food, but I can accept pampering, wink wink, nudge nudge.
So this little food freak-out aside, I want to say to everyone thank you so much for everything. Thank you Colleen for cleaning my entire house. Thank you Lauren for taking my food and fanny pack requests. Thank you Kailey for unpacking my luggage and setting up my hospital room (that I keep calling a hotel room — it’s nice, but it’s not that nice) and bringing things for Eileen and going over and above what I asked for in doing so. Thanks Beck and Zile for taking care of the dog and bringing me tights and emailing work documents for me. Thanks Jenna for driving me around. Thank you Natasha for driving me around and checking in on me and letting me pay rent late so I could buy a new laptop. Thank you Estan for all your advice that helped me buy a laptop and for helping me discover that a latte was indeed something I was willing to suffer a little bit extra for. Thank you everyone who has visited so far — I can’t make this list because I will forget someone and I don’t want to. Thank you everyone who has emailed and messaged me and chatted with me — I can’t respond all the time because sitting at the computer and typing is like being a toddler who finds the coordination to perform the Dance of the Sugarplum Fairies, but I’m reading everything and thinking about how I would respond.
And finally, thank you to all the people who keep appearing in my dilaudid…hallucinations? Delusions? I don’t know what to call it, but one of the effects of dilaudid on me is that I often feel like there is someone sitting next to me or at the end of the bed. Generally, this is kind of distressing, but this latest experience with the drug hasn’t been so bad. I usually think it’s someone I know sitting next to me.
I don’t know how long I’ll be here, but like I said, it will be through the weekend. And if I find myself still hanging out at the Princess Margaret Hotel next week, everyone should come out to the next Raconteurs — I’ll definitely be getting a pass to leave the hospital for for that if I need to.
Sorry that I can’t keep these posts shorter. I’m having a hard time editing myself these days, whether talking or writing, and I do tend to go on. But there really isn’t much else to do in a hospital but blather to anyone who will listen.