Skip to main content

Adaptation

Today is the last day of my second round of chemo. I thought this round would deliver a bigger punch, but I've been tolerating it a little better than the first round. It's been great not being constantly attached to Dmitry. And actually, I don't even have Dmitry anymore. I got a new pole. And as I write this I wonder, have I already told this story? I know chemo affects memory, so if you've heard all this before I'll just blame it on the chemo. I should be able to use that excuse for at least a year, right? My new pole doesn't have a name yet, but I'm asking all the Polish nurses (there are many) for their opinions.

I realize I haven't written in a couple days, and it's probably because I've been too busy eating. The steroids have induced me to eat a couple giant burritos, a quesadilla, Colombian (I think?) food truck goodies, and an array of Mediterranean food. There may have been some more Thai green curry in there somewhere. I've lost track. In any case, I feel my body adapting to this weird chemo stuff. But it's also my medical team adjusting my treatment to match what my body is doing. For instance, Dr. Thienelt, the current attending on the Hem/Onc team, just walked in and took a look at my cankles and decided to take me off IV fluids altogether. So now I can look forward to some of this swelling going down. And more time away from the pole. Hooray.

Other adaptations are in progress. Everyone is always curious about my current hair situation, or at least I imagine they are, and everyone wants to know how I feel about it. At least, I imagine they do. At this point, my hair is more of a curiosity. I'm watching the baldness grow, and arranging my hair in different combover styles, seeing how much baldness I can see at once, then how much I can hide it by fluffing my hair over it, then pulling it into a curly-Q to see if I can embellish the bald spot more. It's fun for a minute, but my scalp is very sensitive and I spend way too much time every day taking a lint roller to my various head dressings and sheets and shirts and everything else. It's time for the clippers.

But I will indulge you with some recent images before I take it all off. First, a couple artsy selfies:


And here's me with a fun wig, my nurses Khursha and Linda checking me out like I'm walking off the set of GLOW:


Maybe one of these days I'll be bold enough to post a combover. I definitely wouldn't put it past me.

There is one more adaptation that is probably the weirdest. And it has to do with the transition away from independence. I've always liked the feeling that I could do things on my own and take care of myself, not need anyone to take care of me, not be a burden on anyone. But now I am so far from that luxury. I have put my life in the hands of doctors to manipulate the deepest of my innards at their will. I can hardly leave my hospital room. I need someone to bring me every piece of food I put in my mouth. I have to ask someone else to bring me every single thing I ever want. Independence just walked right out the door.

But the pouring in of food and care and compassion is like taking a warm bath, and my resistance to accepting gifts and help and love is at an all time low. I know this for sure when Brent can help me take a shower, bloated and bruised body exposed, left arm wrapped in plastic, hair coming out in wet wads that stick to my hands and the walls and everything else. And he can still make me believe I'm beautiful.

The next pictures you see of me will hopefully involve some skull art. Any suggestions?

Comments

  1. Something Halloween themed like an open bloody skull with brain coming out!!!!!

    ReplyDelete
  2. The usual: extra eyeballs, anime fox face, sushi

    ReplyDelete
  3. I like abstract expressionism for your head. I also really like the photo of you with the nurses.

    ReplyDelete
  4. It's so awesome to have someone there who can make us feel beautiful at our worst. I'm glad you have that.

    Something funky and eclectic.

    ReplyDelete

Post a Comment

Popular posts from this blog

A Nearly Final Farewell from Sarah's Parents

Dear Friends - We are deeply saddened that Sarah has entered the ending chapter of her battle with this horrific cancer. The medical experts expect only days left to live. It would really lift her spirits to read about memories you've shared with her and any other comments that you would like to offer. We look forward to hearing from you very soon, and we will read all comments out loud to her. Sarah is doing her best to be her usual spirited self in spite of these difficult times. We are grateful for everyone who has been a part of her remarkable life. Sarah's Mom and Dad

Guinea Pig

Today is day 4 of my first, and hopefully last, clinical trial. It's the first day I haven't had an appointment at the Sarah Cannon Colorado Blood Cancer Institute. I think it might be good luck that the institute and I share the same first name. CBCI is attached to Presbyterian St. Luke's, just a stone's throw from Denver's city park, where you would find the zoo and the museum of nature and science. Brent and I keep saying we'll go to the planetarium one of these days before or after one of my appointments, but it hasn't happened yet. The first day of the trial was long, over 12 hours. It started with an icy drive in, followed by a few unsuccessful attempts to draw my blood before resorting to another picc line. I then met with Dr. Maris, who gave me news I should have been expecting. The results of my testing from the previous week were in, and they didn't look awesome. My bone marrow biopsy showed that the leukemia was back up to 30%. Since my las

What in the hell happened?

Well, I planned to use this domain for some cool, nerdy dev stuff, but "Sarah Develops...Leukemia" kind of works too. I decided to at least try to start a blog to let people know what's going on because I'd like to be in touch with everyone but I'm sure pretty soon I just won't have the energy to tell everyone everything separately. So, how did I get to be laying in a bed on the 5th floor of the Denver VA hospital? I got my first headache on July 15th, just over a month ago now. Brent and I and Pisco went on a long hike in Golden Gate Canyon State Park. All the wildflowers were out, and we saw a moose (my first Colorado moose sighting ever). It was a pretty ideal day. I drove home, parked the car, walked into the house, and was suddenly hit by a pounding stop-you-in-your-tracks kind of headache. I learned later that it was a thunderclap headache, and I started getting them every few days. Then they became more frequent. I took ibuprofen to keep the headac