Sunday, October 31, 2010

Chutes and Ladders

Bendamustine has given me quite a ride over the past three weeks. Despite being just a one-drug cocktail, it packs a punch. Kind of like the effects of drinking jungle juice made with vodka vs. grain alcohol. The latter is never a good idea. But unfortunately, I don't have a choice in this matter. If I did, I would choose straight up Hi-C.

Week 1: lukewarm hell – the debilitating fatigue, head fogginess, acid reflux, indigestion, constipation, and overwhelming malaise left me to do nothing but float around the house like a groaning blob.

Week 2: better, much better. I started to get out and about again and the gloomy skies started to clear. All systems were once again a go. Lots of hikes. Lots of lunch dates and outings. Miss cocky pants probably pushed herself too much with all the renewed energy I had.

Week 3: down again. It was expected that my blood counts/immunity would drop around this time, but the weekly CBC checks never revealed a plummet. No transfusions were needed. I guess this means my bone marrow still has steady cell building power. Maybe it was my marrow in overdrive that sent me into a bad place this week. I felt the familiar swelling in my chest. It is like having an elephant inside of my chest – not one sitting on it like I'm about to have a heart attack, rather one becoming painfully large within it. I could tell that the elephant was not happy in this constrained space.

It was tough to take deep breaths, I'd often get dizzy, and a deep cough crept in, especially when I laid down. My heart was also pumping extra hard. I could feel it push the blood through my ears loudly anytime I tried to lay down and rest. A lymph node on my left collarbone waxed and waned in size, especially if I pushed myself too much. This scared me because the feelings were all too familiar. They are the same ones I've felt every time a recurrence of the cancer has crept in ... and the trend has been for this to happen near the one month mark.

I had daily talks with my nurse practitioner (aka "bestie") at Sloan and laid very low. I diligently took my temperature and did a lot of yoga and visualizations of a chest cavity filled only with bright, white light, not damaged DNA replicating all over itself. This fear of recurrence led to a lot of anxiety, leading to chest tightness on top of the fullness, making it hard to distinguish what was going on.

I had a couple of rough mental and emotional days and a lot of nightmares. One night I was a complete wreck and tried to explain to Craig that I just wanted to take a pumpkin carving scraper to my insides. I wanted to go in and just scrape out everything growing inside of me until I was left with a heap of stringy, orange slop. He gave me a warm washcloth, instructing me to wash my face with it and stayed with me until the screaming sobs ceased.

Week 4: I'm entering this final recovery week feeling comme ci, comme ├ža. Neutral? The big positive is that the chest fullness is gone. The prominent lymph nodes on my collarbone and up and down my neck have at least stabilized. The cough is gone and my breathing is much improved. I'm looking forward to telling my nurse, Brynn, that things have improved. Oddly, it was after a night outside in the frigid wind at a UConn football game tailgate that I felt remarkably better. Maybe a prolonged shot of fresh air, a glittery pumpkin sticker for my cheek, and a cup of hot, hard cider is an ancient remedy of some kind – put that in the clinical trial notes. Maybe what I was feeling was a strange bug, or allergies, or paranoia. One of the struggles of being a cancer patient is to remember that I am also still a human and to not always jump to the conclusion that everything is related to cancer activity. A little post nasal drip shouldn't cause me to start making funeral arrangements.

It's been a game of Chutes and Ladders. I feel like I've climbed a few ladders and made some progress, but unfortunately the chutes have been fast and windy. This Thursday my little plastic playing piece with the pigtails, plaid skirt, and knee socks will be back at the "Start" space to begin the adventure all over again with Bendamustine round 2. At least this time I'm prepared for how high up and how low down the side effect game may take me.


  1. It's so easy to take everyday symptoms and turn them into more but it sounds like this stuff is potent and will do it's job!! As always let us know if you need anything--xoxo Bev&Blake

  2. I LOVE the Chutes & Ladders analogy! Hang in there, and know I'm here for you if you need anything... Michelle :)

  3. Ah Chutes and Ladders and Candyland - 2 first games of total chance, no skill involved (ok you need to be able to count or know your colors) - to win and lose.
    And here you are years later, after I imagine the last time you played - to be using the game in comparison to where you are in your life right now (no doubt about it - a great analogy, like the previous comment commented). But though your life has all these 'chutes' and 'ladders'- may the end result of 'your game' be no chance - may it end with you winning because of the planning, the strategies and the finely orchestrated treatment.