“Roads We’ve Traveled” won’t always be long feature stories. Starting today, we have the first of series of shorter blog posts based on what’s current – the news, seasonal events, or relevant book or music releases, and so on.
The new series will be called “Notes from the Road” and today’s post is about being sick when you’re a recovering cancer patient and a lot of the time, it’s not as simple as dealing with a cold!
I really do miss the days when I could just “get sick.”
Before cancer treatment, getting sick was not a big deal. I just did what we all do. That being: Rest, fluids, and copious amounts of Vick’s “NyQuil.” Eventually, the malady would run its course and I would get on with my life. And if it was a real infection, say strep throat, I could always get some antibiotics from the doctor. It wasn’t a big production. Maybe I needed a day off, but there was rarely the threat of being hospitalized.
As I said, I miss those days.
As a cancer patient – even a recovering one – a cold isn’t always that simple. Especially if you have my kind of cancer – Acute Lymphoblastic Leukemia (or ALL for short).
Acute Lymphoblastic Leukemia: The (Very) Short Version
According to the “Leukemia and Lymphoma Society” website, doctors are unsure of the exact cause of ALL. They do know that some genetic factors can be involved. They know that, irony of ironies, previous exposure to radiation and chemotherapy can be a cause. Certain lifestyle choices and environmental factors can play a role, too. Or, maybe it’s combination of all of the above.
It begins as a random mutation in your bone marrow that produces cells called “leukemic lymphoblasts” and they grow and multiply at an uncontrolled rate. Spreading throughout the bone marrow, lymphoblasts kill healthy cells and attack the body’s functions from the inside. And, since ALL starts in the bone marrow, its main target is your immune system.
Treatment for ALL
Treatment of ALL, for me at least, involved one round of “induction” chemotherapy, one round of “maintenance” chemotherapy, and a bone-marrow transplant. Induction chemo wipes out the initial leukemic cells. In fact, I was told that I had a 90-percent chance of going into remission after induction chemotherapy. But, as I was told, the problem wasn’t necessarily getting into remission in the first place (although it’s by no means a guarantee). The challenge is in keeping the body leukemia-free. Certain genotypes, like mine, make leukemia relapse more likely. Lucky me. That’s where maintenance chemo comes in. It keeps ALL from coming back. I was hospitalized for induction chemotherapy, but I was lucky enough to be an outpatient for the maintenance chemo phase.
OK, so, you’ve survived induction. You’ve survived maintenance. You’ve got your seven shots of drugs in the spine to keep ALL from spreading to your brain. You’re fortunate enough to have a good bone-marrow match for your system. Now, you’re ready for the “big leagues.”
Now comes the grand-daddy treatment of all and what my favorite nurse at Lahey Clinic dubbed as “chemo times a thousand”; a bone-marrow transplant.
In this procedure your body is just pounded with drugs and radiation with the goal of completely wiping out your immune system. And then, donated stem cells are put into you and they do their amazing work, rebuilding your body’s immune system.
Your Immune System After Treatment
So, as you can guess, after ALL treatment, your immune system is like that of a newborn’s. It’s sensitive. It’s delicate. It needs to be slowly re-introduced to the world around it. And while that’s happening, you are very vulnerable. For months, whenever I left the house, I had to wear a mask and gloves. But the odd thing is that, after your bone marrow transplant, it is actually good to be just a little bit sick.
After treatment, you want to have some symptoms of what they call “graft-vs-host” disease. This is what happens when your body (the “host”) struggles against the introduction of something new (the “graft”). In my case, the graft was the new immune system. And you want just a little bit of fight between the two.
Why do you want a little bit of GVH?
The short answer is that a little bit of GVH shows that the immune system is doing what it’s supposed to do: Fight. You want your immune system to be ready to “throw down” when it has to. So there you are. And believe me, mine’s still fighting.
Getting Sick These Days
But getting sick these days isn’t as simple as picking up some cold medicine on the way home from work. Because of my situation, I have to be very careful when I even have a sniffle. A sniffle, in my case, can lead to something pretty serious (like a major infection, or fluid in the lungs) pretty quickly. To help fight this, I’m on a low, daily dose of antibiotics. And when I’m sick (and during the winter I often am), I usually go right into Dana Farber Cancer Institute, bypassing my primary care physician. So, a simple trip to the family doctor can often be a multi-hour ride into Boston.
At the same time, I am so, so very grateful for new immune system. The transplant was on November 8, 2012. It is now February 2017 and I can safely say that every year since the transplant, I’ve more or less felt sick all winter long. I’ve been hospitalized three times for health issues related to GVH.
And yet, and I kid you not as I say this, I’m still one of the lucky ones.
Severe GVH Symptoms
Sometimes, GVH symptoms can be so severe and painful that it can limit someone’s mobility and quite literally sidelines someone.
It can be difficult to be sick so much, but at least I am recovering and I can play with my son. I can go to gym. I can go on hikes and on vacations. And I can work every day. Not everyone is so lucky.
Some of you who’ve been reading this blog since its inception may notice that I say I’m “lucky” a great deal, and I’m sure some of you will say: “You’re not so lucky. You did get ALL after all.” And you would be right to say this.
But still, and this is an idea I think we all should focus on a lot more than we do: Sometimes, you have to know what you can lose before you can truly know what you have.