The Journal
While undergoing treatment for Acute Lymphoblastic Leukemia (ALL), I kept a “leukemia journal” for a few months. I wish I had been more diligent and detailed about writing in it, but at the time, it wasn’t just ALL I was dealing with. About two weeks after my diagnosis, my younger son would die in a household accident.
My feelings were, are, so tangled up. Leukemia and Aidan’s death are so intertwined, so parallel, it’s impossible to deal with one without the other bleeding in, somehow.
The first leukemia journal entry is date is Saturday, July 28th, 2012. I had been released five days earlier from Lahey Clinic after induction chemotherapy and surgery to remove necrotic tissue that had gone septic while I was being treated. The entry starts off like this:
“I guess the hardest part is not knowing how to feel. There’s a lot mixed up in how I feel about Aidan, about my leukemia, guilt, fear, regret, helplessness, and so on. I talk to people…because…half the time I’m not sure I believe this myself.”
Is this Really Happening?
There is a lot of truth to that last statement. At first, I wasn’t entirely sure this all was happening. I felt knocked loose from my moorings and was drifting into a current that would inevitably crush my leaky little dingy. At some points, I was just waiting to get smashed on the rocks.
I was dealing with a disease that, left untreated, absolutely would kill me. And even if treated, had a good shot of killing me anyway. On top of that, I was dealing with such intense grief that I, at times, wondered how I could go on? Sometimes, I even allowed myself to wonder if I really should?
Of course, the larger part of me was in this to, if I may use a boxing metaphor, “go the distance.” But if you really believe that you can be in a situation like this and not think about all ends – good or bad – then you’ve clearly never been in this situation.
You think about it. You have to think about it. You have to come to terms with your mortality, the fact that you may die.
I had to come to terms with my own mortality. S0metines, I even thought of what my gravestone might look like.
The Good, the Bad, and the Crushing Anxiety
In most every leukemia journal entry, I have things about my situation that I classified as “good” or “bad” stuff pertaining to my recovery. Good stuff included going out with Sara, or moving easier, or not getting winded going up the stairs, or cooking dinner. Bad stuff included panic attacks, Sara not getting enough support, or anxiety, or fear.
After I was discharged on July 23rd, I had some real trouble adjusting to life at home. As previously stated, I had to have surgery on some tissue that had gone septic during chemo treatment. What I didn’t mention is that it was rectal tissue. So, a chunk of my left buttock had been removed and had to be packed with gauze which had to be changed every time I had a bowel movement. It felt like having a diaper changed. This all made me feel incredibly self-conscious and made it difficult to leave the house.
There were a lot of other things I was dealing with. I was having regular anxiety attacks, I was weak, and the idea of whether I’d live or die was constantly on the brain. It crowded out other thoughts, much like the lymphoblasts crowding out healthy cells in my bloodstream.
I had trouble sleeping. I had awful dreams of a long and withering death, wasting away in front of friends and family. I had difficulty sleeping with my wife. I was so used to being alone in a bed at this point, and I’d been so traumatized by the events of June and July that I wasn’t very comfortable unless I was alone.
Battling the Bad Feelings
When I could, I would lose myself in movies. Mel Brooks comedies, John Woo over-the-top action. I would watch boxing and sports movies like “Miracle” and superhero movies. Movies of the little guy taking on impossible odds and beating the big guy. Guess who, in my mind, was the little guy? That’s right. I was Rocky and ALL was Apollo Creed.
I wasn’t at all sure I would make it to my next birthday. I didn’t want the moral ambiguity of “Crime and Punishment.” I wanted black’n’white, good vs. evil, epic struggles of the “underdog” kicking the ass of the big guy.
Even as I enjoyed these movies, I was already feeling nostalgic for a time when I didn’t know that the world could be so dark and dangerous.
Ever since my first years as a reporter, I knew that the world just didn’t care about my safety or happiness. I had reported on numerous tragedies – fires, flooding, fatal accidents, and so on. On many levels, I knew how unfair the world could be, but if course it’s different when it happens to you.
I can’t speak for others in this situation, but when this all happened to me, I felt as if I was under siege. I felt barricaded in a stronghold while the forces of destruction waited outside, waiting for my defenses to fail.
Feeling Alone vs. Being Alone
I wrote this in my September 24, 2012 entry, about six weeks before I was to enter Brigham and Women’s Hospital for my bone-marrow transplant:
“I’m not really scared of the operation. I’m not really scared of the chemo and radiation beforehand. I’m scared of my time in the hospital and I’m scared of the isolation.”
In the end, I may have felt alone, but I was anything but. That can make all the difference in a situation like mine. I had my wife, my surviving son, my mom and dad, my brothers and sisters-in-law, my mother-in-law, my relatives and my friends. They all found ways to remind me just how much support I had and it was amazing.
Above, myself and my two brothers. They helped me remember I wasn’t alone.
Books, CD’s, and DVD’s arrived by mail. Money started arriving to pay for expenses. The Winchester Boat Club, Everett Public Schools, and other organizations began raising money for my treatment. I even received a check from a total stranger in Lowell.
Myth of Independence
A positive mental attitude obviously can help, but we have this bizarre mythology in American society about independence. That we, as individuals, can conquer anything alone. In my opinion this is very, very, very wrong.
Why do you think there were wagon trains? Why do you think multiple generations of family live together under the same roof? Why do you think there are professional associations, or unions, or even the concept of networking? Because we need each other and because we can always achieve far more as a group than we can as individuals.
Even Rocky had Mickey.
Was I really going to beat cancer alone without a doctor’s help? Was I really going to face all that grief and anguish and the possibility of death alone? Certainly, the medical aspect I couldn’t deal with alone. Maybe I could have tackled the mental aspect alone, but I probably would have emerged a thousand times more screwed up than I am now, which is saying something.
People often ask what they can do for someone in a situation like myself and so many others have endured. My advice? Just be there. Don’t worry about saying the right thing. Don’t worry about cheering the person up. Just be there.
Just be there.