Have you ever noticed how the medical community has a tendency to use terminology that helps to obfuscate or maybe even minimize the reality behind what is involved with a particular procedure? I hadn’t really thought about it much until I found myself on the receiving end of a number of procedures where I had to ask the question “how is that going to be done?” followed by “you are going to do What?” ….. scared witless by the explanation. Some questions may be best left un-asked.
Take the 30+ days of the first phase of Leukemia treatment called Induction. I’ve seen people inducted into all kinds of clubs/groups….Boy Scouts, Sports Halls of Fame, Knight of Columbus and when it was over, I’m not sure any of them would say…I’ll never do that again. Heck I went through a week long induction into a fraternity and other than some embarrassing moments it was a rather enjoyable adolescent experience.
As I mentioned last week the Leukemia Induction has two phases; Chemo (we covered last week) which goes by the catchy name of 7+3; and there’s the recovery period (which lasts 3 weeks). Of course I had to ask the stupid question “why am I hanging around for 3 weeks if I’m done with Chemo? This is when DRs start shuffling their feet and you get a bit more detail about what I ultimately have named the Dead Zone. This is a 14 or so day period where you have no immune system, no clotting function and limited or no ability to generate new red blood cells. A sneeze from a person with a cold can be deadly, a cut or a bruise could bleed unabated (as I was to find out), and a fever can spike into the 102-103 area without notice or explanation. Add to this, keeping fluid levels up to avoid damage to liver and kidneys from all the meds, diarrhea, rashes, spiking fevers, and mouth sores to name a few and you have an idea of the complexity the issues the DRs and nurses are trying to balance, sometimes literally on an hour by hour basis. The Dead Zone is where the battle is waged…it’s your body, the DRs and nurses, and your cache of drugs vs the world of bacteria, fungi, viruses and your own occasional ineptitude (like a trip and fall).
When I entered the Dead Zone I was pretty optimistic about getting through it with minimal discomfort. I had only the 4 jobs I mentioned last week…Eat, Drink, Sleep, Walk (of course scattered amongst those was some serious talking with the creator as well). Sounds pretty simple. First monkey wrench in the works was the volcanic cysts on my back.
None of the continuous stream of DRs could figure out what it was, what caused it or why it was getting worst. Lots of tests, pictures, poking, and the second worst words you can hear from a doctor examining you, “Interesting…I’ve never seen anything like that before.” Tests ruled out shingles, and a few other items that scare the crap out of the DRs because of high contagion rates and difficulty treating in the dead zone. Much discussion over a Lidocaine reaction from the bone biopsy but no one has seen anything like this as a reaction before. While the DRs ponder I’m stuck with trying to find a position where I can get comfortable enough to sleep. Nights typically involve 1-2 hour segments of sleep interspersed with hallway walks or trying to catch a cat nap in a chair. Sitting in a chair can be more comfortable than lying down although even that only lasts an hour or so. Pain from the site turns bad at times and for reasons I don’t understand. Even without any direct contact it can stat firing off burning pulsing pain from the spine to the hip. One of those nights I spent the entire time either in a chair rocking back and forth or walking the floor. A definite low point….the Dead Zone can be a lonely place.
Seven days into the Dead Zone and I have a much better feel for what I am up against. In addition to the cyst and sleeping problems I’ve totally lost my appetite. Initially it was because my stomach always felt full partially because of all the water weight I was holding and partially because of the burping. Once they got the burping under control (more drugs) and nausea (even more drugs) I had lost my sense of taste. It’s a really strange experience to not be able to tell what you are eating. I actually couldn’t tell the difference between chocolate and vanilla ice cream.
In sympathy with my two pregnant daughters I’ve decided to align my symptoms with there’s. I gained 30 lbs. (in 10 days), have to pee all the time, have a bed full of pillows to try and find a comfortable position to sleep, swollen feet and ankles, and the thought of eating makes me nauseous. I dreamt the other night that I was pregnant with an alien being and it was going to crawl out through the cysts in my back. And that was before they put me on any of the good drugs.
From the neck up I have the scraggly somewhat crazed hollowed eyed look of Tom Hanks in Castaway. From the neck down I look like the Pillsbury dough boy except with the all body rash it’s more like the Raspberry Dough Boy.
Because everyone needs a bit of excitement in their day we threw in a spontaneous nose bleed. Sitting talking to my wife and blood starts pouring out of one of my nostrils. Clamping the nose shut and tipping the head back just caused all the blood to rush down my throat. Without getting into the gory details, it was three hours of spitting up blood clots and clamping the nose until a nose specialist could come and pack the nose to stop the bleeding. BTW…that joins bone marrow biopsies as another item for my “Bucket Black List” (things I don’t want to do (again) before I kick the bucket). Packing the nose involved shoving a stiff piece of card board like material about the size of a nail file up your nose till it feels like it’s coming out your eye and then spray it with saline to make it expand. And because no good deed goes unpunished, my eye swelled shut for the next couple of days until they decided they could pull the packing out.
Seems every day there is a new problem/symptoms (rash, sore throat, headaches, back/wound pain, swollen eyes, fevers, nose bleeds, etc.). For each problem there is a treatment which in turn often has side effects that generate new problems which in turn have other treatments….you get the picture. Nose bleed was a classic example. Antibiotics for spiking fevers results in a rash which in turn itches and has to be treated with another med which in turn affects the heart rhythm which requires constant heart monitoring.
All that said, I have survived the Dead Zone, or at least the first two weeks of it. It’s been an obstacle course of tests and experiences that taught me a lot about patience, pain, flexibility, resilience and prayer.Next week if all goes well we will talk about turning the corner and the body’s recovery.
PS…2 weeks to the Boston Marathon. There is still a chance I could get out of here in time to make it to the starting line. Making it through the first mile however would be a totally different discussion.