More specifically, I am Al’s Primary Cutaneous T-Cell Lymphoma. Even more specifically, I’m Al’s Anaplastic Large Cell Lymphoma. Or, you could just call me Cancer, but you’re better off not calling me at all, and hoping that I never call you.
Al is fortunate to have me. Really. There are many types of lymphoma more aggressive than I am. I hear medical staff describe me as non-aggressive, indolent, and slow-growing, and honestly I find this kind of insulting. I’m no wimp-phoma. I usually affect the skin only, but in one in ten people, I will progress further to the lymph nodes and/or internal organs, with serious complications. And now, I’m doing my best to ruin Al’s day, maybe even ruin Al. Goals.
So, where did I come from? Who can say? Theories abound. Here’s mine.
Al has ulcerative colitis. (For more on that, see “I Am Al’s Ulcerative Colitis.”) For the past several years, he has been treated intravenously with an immunosuppressive drug. Every eight weeks, he sits in an infusion therapy room with other patients, most of whom are undergoing chemotherapy for cancer. There is some irony in the fact that he is sitting there having a drug infused that allowed me, a form of cancer, to sneak past his body’s compromised defenses.
In November, I manifest myself as an anonymous sore. My way of saying hello. Just an angry purplish bump on Al’s upper thigh—more specifically, his right inguinal area. “Inguinal” is a nice way of saying “groin.”
(Truthfully, I manifested myself much earlier in Al in the form of fatigue. To power myself up, I’ve been stealing energy from Al. As a result, he’s been exhausted, lethargic, and quite adept at taking naps for quite some time now.)
The bump’s location means Al has to drop his trousers for every physician who wants to have a look at me. I laugh every time. I know it isn’t nice, but neither am I.
Because Al is susceptible to staph infections (see “I Am Al’s Staph Infection”), I am initially misidentified. However, the antibiotics that work on staph infections don’t work on me at all. If anything, the bump has become angrier, bumpier, more purplish. The primary care physician refuses to see me any longer, and refers Al to a dermatologist.
“Drop ’em”—or something to that effect—says Dr. Wilson, the dermatologist. “Let’s have a look.” She stares at the bump curiously, as does her assistant. I enjoy the attention; Al, not so much. The specialist concurs with Al’s primary physician: she isn’t sure what I am, but I am definitely not staphylococcus. Nonetheless, she decides to cut the bump open and look at my insides. There’s not much to look at, and nothing to squeeze out, though not for want of trying. I might be indolent, lazy, and slow-moving, but I am one badass mass.
“This is probably scar tissue,” the doctor decides, but brings the scalpel back out to take a sample, just in case. The physician cuts part of me away to run tests on and sews Al’s leg back up. Doesn’t bother me so much; like I said, I’m tough. Al’s a tough guy too; two days later, he’s out on a hike in the mountains. He is grimacing a bit; I enjoy that. For the next few days, Al keeps busy while waiting to hear some innocuous results on me.
Which brings us to December 8. D-Day. Diagnosis time. Al calls the doctor’s office to check on his biopsy results. The nurse says, “Can you come in this afternoon?” This seems a little bit odd to Al, and I sense that he’s a little bit worried. Up until now he’s always been given the “all-clear” on his bloodwork and other tests by phone, not in person. Off he goes, to see the dermatologist again. Today, Dr. Wilson appears to be at somewhat of a loss. She gets right to the point. “These are not the results we expected,” she says, more than once. She thrusts a copy of the lab report at Al, as if to show him that she isn’t making this up, and reads from her copy:
“Both the routine histology and the immunophenotype are consistent with a T-cell lymphoma . . . The findings are more concerning for a systemic lymphoma.” Al is listening, but not completely. He doesn’t entirely comprehend what he’s being told. Do I have cancer? he wonders. He’s afraid to ask.
The dermatology office will call the oncologist to schedule an appointment for Al. Before we all part ways, Dr. Wilson pulls the stitches out of the bump. “Is there anything else we can do for you?” the doctor asks. No, Al thinks, you’ve done enough. He thanks the doctor, smiling tightly at the ridiculousness of doing so.
Thus far, nobody is using the word cancer. Still, saying the word lymphoma seems to make everyone move a little more quickly and schedule Al’s appointments and tests a little bit sooner. They call me indolent? Ha! I’m getting these folks moving, aren’t I?
And so, on December 16, Al and I see Dr. Locke, the oncologist. The office staff runs some blood tests. The doctor explains that he’d like to see if I have reached Al’s bone marrow. He can do a bone marrow biopsy right here in his office, right now. Uh-oh.
I don’t even feel the bone marrow biopsy. For Al, though, it is a different story. The procedure involves forcefully inserting a needle in the back of Al’s hip (“A little sting, here . . .” Dr. Locke says. He really does!) and then all the way into the bone. The doctor really leans his weight into it, remarking, “You have good strong bones.” After his compliment, Dr. Locke bears down with such force that it brings tears to the nurse’s eyes. Al is holding on to the table for dear life. Even after the doctor is finally finished, Al has his teeth clenched, and fingers clenched tightly to the sides of the table. Maybe the good doctor should have given him a bullet to bite. Or a shot of whiskey.
Dr. Locke explains that he doesn’t expect to see any signs of me in Al’s blood or his bone marrow, being that I’m primarily cutaneous. However, as he says, T cells—white blood cells, part of the immune system—are “travelers,” and as such, I could hitch a ride to other places. The plan is to perform a PET scan to see where else I might be hiding. And then, assuming I haven’t spread, to radiate my area of origin (Al’s inguinal area). Al agrees to the treatment plan.
It’s pretty clear that Al and I are not going to be friends. I mean, he’s trying to kill me. To be fair, I have the same intention regarding him.
There’s a classic fable about a scorpion who asks a frog for a ride across a river. The frog is hesitant, fearing the scorpion will sting him. The scorpion points out that if it stings, the frog will sink, and the scorpion will have caused its own death. The frog agrees, but halfway across the river, the frog feels the scorpion’s sting. Sinking and dying, the frog cries out, “Why?” The doomed scorpion’s answer? “It’s in my nature.”
Like the scorpion, killing is in my nature. As long as it isn’t too much work. Remember, they call me lazy.
Now we’re at December 21, the day for Al’s PET scan. Al jokes to the technicians that he doesn’t have any pets, and in fact, even his plant died. The technicians smile dutifully. PET is an acronym for positron emission tomography. Basically, Al is injected with fluorodeoxyglucose, which is a sugar and a short-lived radioactive tracer isotope. Because Al hasn’t eaten anything for the past twelve hours, he is cranky, and his cells are hungry, so they eagerly take up the radioactive (but not dangerous) solution. Cancer cells really like sugar; they uptake a greater amount of the solution than normal, non-cancerous cells do, which leaves me positively glowing! (This process takes about an hour. That works out well; I am ready for a nap, and so is Al.) And then, Al is passed back and forth through an imaging device. The technicians look for me. They find me, right where the expected to: a bright spot in Al’s inguinal area. They also find two small stones in Al’s left kidney. (See “I Am Al’s Kidney Stones.”)
The final report of the PET scan reads:
Minimal uptake in the skin right inguinal region at the level of the hip likely corresponds to the patient’s biopsy site. Correlation with pathology findings [suggests]… this may represent the patient’s primary lymphoma. No other areas of abnormal uptake demonstrated; specifically no lymph node uptake is demonstrated.
I am confined to the right side of Al’s groin, which is where they plan to radiate. Good news for Al, but not so good for me, probably. We shall see.
Later in the day, it’s time for Al and me to meet the radiologist. At this point, I’m as tired of being stared at as Al is of dropping his pants. The radiologist looks at me with recognition. He’s seen my type before, and he’s also seen the PET scan results, and so he decides against a systemic treatment. He is confident that hitting me with orthovoltage radiation in a localized area a few times—okay, twelve times—will take care of me. The radiologist’s nursing staff (stop staring at me!) draw a purple oval on Al’s thigh so that the equipment can be aligned to focus the radiation in the exact same spot each time Al comes in for treatment. They give Al specific instructions to avoid using lotions on, excessively washing, or scrubbing the area, as the marking is important and needs to stay on. It will be a week before the radiation starts. “DON’T wash the marking off,” they remind him again as he leaves. By the next day, the purple oval is already beginning to wear off. Al draws it back on with a Sharpie.
December 28: Radiology Day One. Al is upbeat, if a little nervous, when he shows up at the radiology department. He isn’t sure what to expect. He jokes to himself in the waiting area that the magazines on display—borrowed Time—are a bad sign. After forty minutes of watching other radiation patients pass through the waiting room, Al is beginning to get a little antsy. How long will all of this take? Did he check in correctly? Does anyone know he’s here? Finally, he’s called back. He’s on the board for “superficial treatment.” Is that another insult to me? (Are they saying I’m shallow?)
Now it’s pants-on-the-ground time again. It’s also time for what I’ll call Introduction to Bodypainting. The radiology nurse uses a paint marker to trace out a fresh, more permanent, purple oval on Al’s thigh. It’s not the worst mark he’ll end up with from this whole experience. The orthovoltage unit is maneuvered into place over a lead plate with a cutout for the oval, and everyone (except Al and I) leaves the room. There’s a barely audible click, a flash of light and a slight warm feeling, and two minutes later, they are back. “You’re done,” they say. That wasn’t bad at all. All that waiting, for just mere seconds of treatment. I think I will be able to hack this thing they call radiotherapy, or radiation therapy. Everyone is quite pleasant. I might even like them if I didn’t know that they are trying to kill me. “We’ll see you tomorrow,” they say, this time not bothering to remind Al not to scrub the mark off his leg.
I feel fine after the first few treatments. Al can’t feel any difference either, though he is starting to get a pink oval on his leg. While we wait to see what else happens, I am starting to wage a little psychological warfare. Indolent I may be, but I can’t have everyone working so hard to off me without putting in a little effort of my own. I believe in the power of negative thinking. I’m going to get inside Al’s head—figuratively, if not literally. I need to remind him that the scorpion stops the frog from reaching his destination. I will win.
Every itch, every blotch Al gets on his skin now, even the tiniest red spot, he automatically thinks of me. As the days go by, he can’t tell for sure if he has begun to feel the effects of the radiation or not. Sometimes he thinks his leg hurts; other times he thinks he’s imagining it. I have noticed that he’s walking with a limp a lot of the time.
Each day, excepting weekends, Al and I go and have our radiation therapy. Al leaves work on his lunch break and heads to the hospital. The wait is usually very short, and the radiation takes only minutes. Al is back at work in no time at all. And then, after two and a half weeks, without even a pause to celebrate the New Year, we are done. Al gets a certificate of completion for his efforts to kill me.
Al’s really feeling it, though. He has a tennis ball-sized red burn on his thigh—well, his inguinal area—with a painful, raw blister in the center. He takes a lot of naps. I don’t mind, I like naps. The radiation has left me weak.
The oncologist declares victory at the follow-up meeting, a week or so later. He doesn’t even feel the need to look at any other areas of concern to Al. “Unless you have a lesion that becomes a tumor, gets biopsied, and diagnosed as lymphoma, we have nothing to do . . . but wait.” This is how to deal with a non-aggressive, indolent, slow-grower like myself. For now, he reiterates that I am defeated.
I’m not defeated, though; I’m just tired. Already I have plans to open up a few branch offices. You know what they say: if you’re not growing, you’re dying. The radiologist has already told Al that he will most likely be seeing Al “each year or so,” and if there are any cutaneous clues that I am setting up shop again, “we’ll take care of it.”
I take comfort in remembering what the oncologist said at our first meeting: “I don’t trust lymphoma.” He shouldn’t. I will be back. Whenever I get around to it.
I wish Al the worst. It’s in my nature.
AUTHOR’S NOTE: The lymphoma diagnosis initially felt surreal to me, as if I were observing it from outside my body. I learned that I had trespasser, a malevolent entity that was determined to be the end of me. When I began treatment, I viewed it as a physical battle, but also a battle of wills. I began chronicling events with the intent to share the story, but without making it all about myself. I used part of my middle name (Allen) to provide some degree of separation and to make it easier to share even the most personal details. It became clear just how much the disease and its treatment affected my day-to-day routine and my state of mind. I thought, why not tell the story from the antagonist’s point of view? And so, I gave voice to Lymphoma for this work.