Just a little update on what’s happening here in Snow’s Cancer land…
This last Wednesday, I had a new Trifusion Catheter put into the right side of my chest. This procedure is very painful and it took a couple of nights of a lot of painkillers to get through it. It’s entirely possible that I am a wimp… I was sleeping with a bag of ice on it and last time I got one, it took 4 days for the pain to go away. Other people get these and have no problem at all… I’m not one of those people, apparently.
Same day, they started my 7 days of Fludarabine, a less powerful chemo than the last bone marrow transplant, but enough to prepare my body to accept the donor cells. On Monday, I’ll get Total Body Irradiation and then the donor cells. Woot! Transplant Complete.
Then, I enter into ANOTHER 100 days of isolation where I have to be supervised at all times. If you’re interested in helping me out by sitting with me and doing a couple of chores or giving me a ride to the clinic occasionally during those 100 days, please contact me or Emily Chaney and we’ll describe what it’s like.
Somewhere in the range of 40-80 days after I get my cells, I’ll be heading to Seattle to participate in a clinical trial to hopefully guarantee that I will not relapse (of course there i never a guarantee, but this study is pretty awesome.) If you want to look at the details of the study, It’s at Fred Hutch in Seattle and it’s detailed information is here.
Wanna help, or just provide entertainment?
Caregivers are needed… We’ll probably have two people come at a time and sit with me and drive me to the hospital if I exhibit signs of infection or delirium. If you have my phone number, you qualify. Only good friends need apply.
Moving to Seattle for a month costs money. To Contribute, my friend and hilarious comedian and writer, Andrew Orvedahl not only started a fundraiser to cover the costs of my say in Seattle, but matched $2000 of it with his own cash. My friends don’t suck and this guy is super generous and amazing. I’m so incredibly grateful to everyone that pitched in and to Andrew for his efforts.
To help with the costs of my trip to Seattle for the innovative clinical study that will hopefully provide her and many others with long lives despite a high risk form of Leukemia,
I’ve been unable to work full time for almost 9 months. Luckily, my company is amazing and provides short term disability for descending periods of 100% salary, 60% salary and now 50% salary. Luckily I’ve been able to supplement this with PTO (vacation time) that I didn’t use and my coworkers have been able to donate. Also, Comedy Works has been collecting buckets after the shows and have been incredibly generous as well.
Go see the incredible comedians at the best venue in the country and support the club that has provided so much love and support to me. Their schedule is at https://www.comedyworks.com/shows/calendar
Finally, I’ve been staying in the hospital for another 30 days (my 4th time of 30 days) where I’m not allowed to leave the floor and section of the hospital. This can drive even the most creative people insane. But, I’m doing alright. Luckily the staff at PSL has an exceptional sense of humor. But, heavy medication and boredom will strike. One of the 30 day periods, I came home to two cases of salt and vinegar chips that I ordered online while I was heavily medicated on pain killers. I’m surprised that I didn’t find a puppy there. Luckily, I found the salt and vinegar chips a home. I’ve also received a lot of great gifts during my hospital stays, many of which I had to give away or passed along to friends because I didn’t need them and didn’t want anything to go to waste.
I can’t get flowers because I once again have no immunity… and I can’t have very many visitors because I’m so at risk of getting sick. So, I’ve made a wish list while I’m sitting here (it’s really a work in progress) on Amazon of silly things and important things that come to mind while I’m often in pain, often sick, and often bored.
c/o Presbyterian St Lukes
1719 E 19th Ave
Denver, CO 80218
You also have permission to just laugh at the list… it’s everything from gift cards to banjos. A girl can dream.
Thank you all for your love and support. Please keep me in your thoughts and prayers. I’m not out of the woods yet.