When we checked into my isolation BMT room on February 14th, Taylor and I got to work hanging Christmas lights, pictures of friends, and a balloon banner. During the process, a nurse kindly hung up a color coded calendar on the inside of my door with the 21st highlighted as Transplant Day and spaces each day for staff to write my blood counts. If you know me, you’ll know that color coded calendars are My Thing. I love my calendar. I pester the staff to write down my counts, and every day I change the whiteboard to reflect what day of the process we are. Today is day +6. Tomorrow marks two weeks that we’ve been here.
Last week, while my doctor was visiting during daily rounds, he made a sweeping motion towards today and tomorrow’s zone on the calendar and said, “I call this The Doldrums”. He even used a fake scary voice, which is not usually His Thing as a serious researcher/oncologist.
So far, The Doldrums have been just about what they sound like; a listless, uncomfortable period where it seems like I’m drifting more than sailing, sinking more than healing. Right now, the inside of my mouth feels like the aftermath of taking a reckless bite of a scalding hot pizza. Burned Pizza Mouth. Food tastes like cardboard when I can be convinced to try and eat. My tongue has been described as “scalloped” and there are a few scabby mouth sores on the inside of my mouth. Swallowing my spit and water feels pretty similar to swallowing a rogue unchewed tortilla chip. Swallowing my gross mucousy spit makes me pretty nauseous. Oh, and I have menstrual cramps for some reason. (More TMI- all of my pubic hair came out in the shower last night. The rest of my hair is hanging on inexplicably.) The bottom tier of pain meds available is a small dose of OxyContin, so I’ve pretty much been in an Oxy-induced half-nap the last twenty four hours.
My white blood cells are at an undetectable level, and I’ve needed potassium transfusions every night the past few nights. My platelets will continue to drop before things start to get better, and I’m told it’s more likely than not that I will need a platelet transfusion here soon. Regardless, I actually don’t feel that bad. If this is the extent of the Doldrums, I would be a very happy camper. A happy, bored camper.
I don’t want to jinx anything, but if there were going to be massive complications with my transplant, they likely would have started already. Also, I’m told that another patient who was on the same clinical trial engrafted and went home on day +12, which is insanely early. According to my Nurse Practitioner, this person had a good 40 years on me, which gives me some hope that I won’t be trapped here for the full six weeks they told us to expect on the longer end. My goal is to not need a feeding tube because that may set me back a little bit, so choke down my pills I will.
Chemo and radiation weren’t nearly as bad as I was expecting them to be. The chemo during the initial induction phase was a lot harder on my body than the cytoxan I received for two days on the 15th and 16th. I did have one day where I felt really sick, threw up a few times, and I had the posture of a scared animal- my shoulders wouldn’t relax down from near my ears. Radiation was more annoying than anything else. I had to be carted from the main hospital to the cancer center across the street nine times. The only thing is, they can’t just push you across the street in a wheelchair, you have to be transported via ambulance. I had nine appointments, so I had eighteen 0.2 mile-long ambulance rides last week. Eighteen. That’ll be a fun bill to receive.
During my eighteen ambulance rides I had to make small talk with the EMTs. On the last day, I was so annoyed and over it (it was also 6am, in my defense) that when asked what I did for work I rudely snapped, “I’m disabled, obviously”. Technically the truth but I really didn’t have to do it to him like that.
Radiation itself consisted of me half standing with a bicycle seat between my legs, holding on to arm supports, with a “one-size-fits-all” harness wrapped around my crotch and torso while a laser was pointed at me in ten minute increments. I didn’t feel anything, but I did have to hold very still. Lead blocks were placed on a velcro board to protect my lungs and were lined up with some paint marker on my chest that I could not wash off. The hardest part was just feeling pretty un-human during the whole process. Turns out, radiology techs can be notorious for moving your body around like you’re a literal hunk of meat. Somewhat related, Taylor and I tried to watch HBO’s Chernobyl while all of this was going on and that was a Mistake. Bad bad bad idea.
The transplant itself was incredibly uneventful. I didn’t even take a picture of the bag of cells. I was premedicated with benadryl and ativan, it was 8pm when the first bag of cells got here, and I slept through the second bag. Because I’m participating in a clinical trial, I had to have my vitals taken every thirty minutes for four hours after the last bag, so I was awoken until like 2 in the morning by my nurse that night. She felt bad, but it was for science so I wasn’t that annoyed.
Mentally, I can’t tell if I should feel like I’m out of the woods. I’ve decided that I’m either at the edge of a clearing, looking into a deep, dark forest, or somewhere in the forest, barely able to see the suggestion of a meadow in the distance. Either way, the meadow will come eventually, and that’s really the biggest thing keeping me going. That and the luxury of eating a runny egg once I get off immunosuppressants. And going outside. That’ll be nice.
My window has a view of a hospital parking lot and a neighborhood with lots of trees. The street I can see is a popular spot for hospital employees to take a smoke break, and homeless people are frequently pushing their carts down the sidewalk. I catch myself looking at the cart-pushing people with uncomfortable envy. Their heads bob under shadows of trees, they kick garbage into the street, they yell at birds– they’re out there living.
3 thoughts on “Day +6: The Doldrums”
I love reading your posts. I’ll be going through all of this very soon. I’m batch cooking now but sounds like I won’t be eating much with scallop mouth. I love your sense of humor and how you’re keeping a blog about this whole experience. I need to go back and learn about your clinical trial. I have high risk MDS with FLT-3 mutation. Blast cells were down to 2% at last marrow. Hopefully those little suckers are gone now. Thinking of you (but not in a creepy way). I’m seeing glimpses into my near future. But your room looks way cooler than mine. Christmas lights. Yes! Great idea. I love them.
You are strong as hell but also a writer
Thank you for sharing your transplant with us. I like to follow you. U .C Davis . This is the same place I am looking at, with the same Doctor. It is nice to see how they care For YOU! The prossis you go though, how they help you though the thick and thin and all this Tromma your body is going through . You are brave and doing a grate job fighting this battle. I am not there yet but will be…….For one, I need a Care giver, and I have pets, dogs, cat and a parrot that I need to figure how to get care for them whille I am in transplanand and life after transplant with the pets. I send you healing thoughts dayle. Hang in there , I’m praying for all us fighting this battle.