I found myself crying a lot today. Random spurts of tears streaming down my face, most of the time completely unprovoked, and me thinking to myself god damn.. stawp. wtf. It’s the realization that today is my last day out in the wild before I go into the hospital tomorrow for a month and a half. It’s the realization that things are about to get really terrible before they get better. It’s the realization that there is a possibility of mortality with transplant. It’s the realization that I could be in a spot similar to 2022 when I thought I wouldn’t make it out of the hospital alive. It’s the realization that my family is also going to go through a very traumatic several months, that my brother is donating 1.5 L of marrow to me and that is not a benign procedure either, and that my mom is going to be exhausted from caring for both of her kids.
I’ve been asked a lot of “How are you doing?” I usually answer with “I’m okay.” or “I’m fine.” And for the most part, I’m not lying. For the last several months, I’ve been getting 8 hours of sleep a night, getting fed elaborate home cooked meals by my mom three times a day, going on leisurely walks, taking a daily siesta since I’m fairly fatigued, and spending time with my family. All in all, a very simple and calm life, one of rest that my body craves. However, the thought of disrupting this calm for a potentially life changing future is scary AF. My transplant team came by today while I was getting my IVIG infusion and I got officially consented for the clinical trial that I’ll be on (link). I asked them to talk to me as if I wasn’t a pharmacist, and even though I know all of this stuff, hearing it out loud made it feel that much more official. Diarrhea, skin rashes, ulcers in your mouth so painful I’ll need a pain pump, vitals every 4 hours to make sure I don’t have a fever which could be a sign of infection, nausea, vomiting, hair loss, pain with urination, headaches, potential seizures, fluid overload, brain fog – 0/10 do not recommend any of these.
The other component to this all, which feels ridiculous to even express, is that my appearance has changed so much that I don’t even recognize myself anymore. I know, it sounds so vain, but here we are. I’ve looked at pictures from the past – the healthier version of me, the not so healthy versions of me, the bald me (I shaved my head on Friday). Beth had to remind me, “I love being forced to lose my hair to chemo and I feel great about being bald” said no one ever and that I’m allowed to feel all my feelings of anger, grief, disappointment, etc. But this fucking sucks.
In any case, a few things I’ve learned from having my head shaved:
- I totally understand why Maple hates getting groomed and why little boys cry when they go to the barber! The blade on your skull feels weird and kind of pulls at you.
- Your scalp is really itchy after.
- Your head gets COLD. I wear a little wrap around my head all the time now and feel a little bit naked without it.
- I’m thankful for my mom for making us switch positions as babies when we were napping because I’m told by folks that I have a round head. My mom & dad actually kept detailed journals on how many minutes I slept on each side of my head during our naps.
This experience also made me want to continue donating my hair when my chemo curls grow back. I’ve donated my hair 6-7 times since I was a teenager, and most recently in March when I knew I’d be losing my hair. I keep reminding my bald ass self that my hair will grow back eventually and it’s just temporary.
The two highlights of my weekend were a) seeing the therapy dog Keith and b) having a lovely dinner with the family on Mother’s Day. My mom really is the GOAT and I am so lucky.
