Kicking some mass ass…
Photo: Ben White
Being a neophyte to the world of medicine and the healthcare community as a whole, hospitalization was a new experience for me. You have loads of extra time on your hands to think about the world at large, or the space in front of you. Some thoughts are deeper than others, some are quite small:
Did they get a price break on tan paint?
There's nothing good being served over all this ice!
Who made this food and have they actually tried it themselves?
Where can you get more attractive hospital gowns?
The hospital is no spa or hotel--in fact it’s pretty high on budget and low on amenities. But the people there are so exceptional and caring, and with all the subsequent visits I was always glad for their constancy and commitment to well being.
One thing I came to realize is that you’re no longer in the driver’s seat and most of what’s happening is well out of your hands. There is a certain rhythm to the hospital that became clear and I learned to embrace their flow of time. It kept me sane to peg my days to what was happening next and fill in-between with plenty of reading, music, and conversations.
During the first weeks of my stay, which was the longest stretch, they hit me with as much as they could of the chemo, steroids, and other medications to make up for lost time and ensure they could aggressively attack this mass. There were a few things that seemed slightly unreal during these weeks (a few?).
First thing was a sensation in my chest and torso that didn’t feel like other sensations you’d normally sense. They were inconsistent but present over the first weeks, like a funny tickling sensation inside. Apparently this isn’t uncommon although there are no scientific reasons for it. I envisioned that the chemo was flooding into my system and dissolving a ball of tangled fiber like some kind of strange Pacman game.
Then there were the dreams. Crazy, drifting, situational dreams. The vividness and repeated scenarios night over night seemed like my brain was working out the same situation and trying to manage a conclusion. To what end I’m not sure. I slept long and hard and surprisingly never had issues with it even while on steroids. But it’s curious that you can drift into a deep sleep state and then never remember what was going on in your head. Maybe that’s a protective measure our brains give us during strange times.
Sense of taste, appetite and smell all went off the range. Perfume, cleaning products, and especially the food they served—all hit me wrong. Meat was unpalatable and my best guess is that this is what a metal pipe would taste like—if you were into metal pipes! I quit eating eggs just to be sure that when I was done, I’d want them again. So diet and food became a central preoccupation.
Finding the best food sources and combination of protein and carbs was important to maintain strength and muscle. And important that they tasted good. In my search, I’d found some good information and recipes for food that was working well. The running joke was that I brought a larger bag of food items with me to the hospital each time than I had of clothes and toiletries! I would make oatmeal bars, bring granola mix, nuts with salt (nothing had salt on it!), fresh fruits (when not neutropenic), dried fruit, hard candies, poundcake that my fabulous husband would make me, soy milk and protein powder with a shaker, packets of honey and full fat yogurt. Sodium and fat are a highly controlled dietary item in the hospital but when you’re struggling to eat and have food that tastes good, and your weight is dropping off, these are key to getting the right calories into you. Normally the nurses would stash the perishables for me if there was no refrigerator in the room, or they’d bring it on the food tray. It made a difference to have things that tasted good and were familiar when you get hungry at odd hours of the day or night.
We all have our own methods of coping and it’s my hope that people find their own survival guide and combination of things to get through the process. My oncologist told me “it’s a marathon” and she meant it. You have to plan for this and prepare for your own self care as this goes on. I’ll share what I discovered in the resources of this site, but am open to learning how you managed to overcome some of these issues—and others—so please feel free to contact me!
