I AM AL’S LYMPHOMA
More specifically, I am Al’s Primary Cutaneous T-Cell Lymphoma. Also known as Anaplastic Large Cell Lymphoma. Or, you could just call me Cancer. You’re better off not calling me at all.
Al is fortunate to have me. Really. There are many types of vicious lymphoma more aggressive than myself. For instance, NK T-Cell Lymphoma. The NK stands for Natural Killer. No kidding. Don’t get me wrong, I’m no wimp-phoma. While I usually affect the skin only, in one in ten people, I will progress further to the lymph nodes and/or internal organs, with serious complications.
I am often described as non-aggressive, indolent, and slow-growing. I personally find this insulting, but what can I do? I can do my best to ruin Al’s day, maybe even ruin Al. Goals.
So, where did I come from? Who can say? Theories abound. I do know this.
Al has ulcerative colitis. (See ”I Am Al’s Ulcerative Colitis.”) For the past several years, he has been treated intravenously with an immunosuppressive drug every 8 weeks. He sits in an infusion therapy room with other patients 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 exist.
In November, I manifested 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.”
My location causes Al to have to drop his trousers for every physician that wants to have a look at me. I laugh each 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”), it is suspected that this is my identity. However, the prescribed antibiotics that worked on staph infections don’t work on me at all. If anything, I have become angrier, bumpier, more purplish. The primary care physician refuses to see me any longer, and refers Al to see a dermatologist.
Truthfully, I had 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.
November 22. “Drop ‘em,” (or something to that effect) says Dr. Wilson, the dermatologist, “let’s have a look.” She stares at me curiously, as does her assistant. I enjoy the attention; Al, not so much. The doctor is doubtful that I am a staph infection. Nonetheless, the decision is made to cut me 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…. And so…back comes the scalpel. The physician cuts part of me away to run cultures 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.
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 to see the dermatologist again. Today, Dr. Wilson appears to be at somewhat of a loss. Nonetheless, she gets right to the point. “These are not the results we expected,” she says more than once. She thrusts 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, either. “Do I have cancer?” he wonders. He’s afraid to ask. Rightly so. Yes, Al, you have cancer of your white blood cells.
The dermatology office will now be calling the oncologist (specialist on malignant neoplasms, aka Cancer) to schedule an appointment for Al. Before we all part ways, Dr. Wilson pulls the stitches out of me. “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” when referring to me. Still, saying the word “lymphoma” (don’t shout it in an airport) seems to make everyone move a little more quickly and to 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, December 16th, it is time for Al and I to 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 will do a bone marrow biopsy right there 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 is performed by forcefully inserting a syringe in the back of Al’s hip (“A little sting, here…” Dr. Locke said. He really did!) and then forcing the needle 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 onto 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 are “Travelers,” (I have so many names!) and as such, I could show up other places. The plan is to radiate my area of origin (Al’s inguinal area) after performing a PET scan to see where else I might be hiding. Al agrees to the treatment plan.
It’s pretty clear that Al and I are not going to be friends. He is determined to kill me. I have the same intentions regarding him. As the scorpion says in the ancient fable, “It’s in my nature.” As long as it isn’t too much work. I yawn lazily.
Dec 21: Today is the day for Al’s PET scan. Al says that he doesn’t have any pets, and in fact, his plant died. The technicians smile dutifully. PET is an acronym for Positron Emission Tomography. Here’s basically how it is explained: Al will be injected with fluorodeoxyglucose, which is a sugar and a short-lived radioactive tracer isotope. Cells like to absorb sugar, especially cancer cells. Because Al hasn’t eaten anything for at least 12 hours, he is cranky, and his cells are hungry, so they eagerly uptake the radioactive (but not dangerous) solution. This process takes about an hour. That works out well; I am ready for a nap, and so is Al. While we nap, my cells will uptake a greater amount of the solution than normAl, non-cancerous cells will. And so, when it is time, Al is passed back and forth through an imaging device, which will leave me positively glowing! Then, they take a look to see if they can find me. They do. They also find two small stones in Al’s left kidney. (See “I Am Al’s Kidney Stones.”) The final impression of the PET scan reads like this: “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… this may represent the patient’s primary lymphoma. No other areas of abnormal uptake demonstrated; specifically no lymph node uptake is demonstrated.” So, for now, 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. We shall see.
Later the same day, it’s time for Al and I to meet the radiologist. 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 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 when he shows up at the radiation department, but he isn’t quite sure what to expect. As a result, like myself, he’s a little bit nervous. He jokes to himself in the radiology waiting area that the magazines on display, “Borrowed Time” are a bad sign. After waiting 40 minutes and watching other radiation patients go out of 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 caled back. He’s on the board for “Superficial Treatment.” Is that another insult to me?
Now it’s time for pants-on-the-ground 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. A lead template is placed around the oval, and the equipment, that is to say, the orthovoltage unit is maneuvered into place. Everyone (except Al and I) leaves the room. Two minutes later, they are back. “You’re done,” they say. That wasn’t bad at all. Neither of us felt a thing. 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.
After the first few treatments, I can’t tell a difference. Al can’t feel anything either, even though he is starting to get a pink oval on his leg. I am, however, starting to work at Al, as much as I loathe working. I’m starting to get inside his head. Not literally. I’m doing my best to psych him out. Every itch, every blotch he 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. I’m not too fazed yet, but there are several more treatments scheduled for us.
And so, each day, excepting weekends, Al and I go and have our radiation therapy. Al leaves on his lunch break and heads in to the hospital. The wait is usually very short, and the radiation continues to take only minutes. Al is back to work afterwards in no time at all. 12 treatments later, we are done. Al gets a certificate of completion for his efforts to kill me. I’m feeling more tired than usual. So is Al. He takes a lot of naps. I don’t mind, I like naps. The radiation has left me weak.
When we see the oncologist a week later, he declares victory. 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, though. I’m just tired. Already a couple other spots are forming, as the experts expect will continue to happen in the years to come. The radiologist has Already told Al that he will most likely be seeing Al “each year or so, with a spot here or there, and we’ll take care of it.”
I find all this writing too much work. It’s tiresome. I’m finished for now. You should see Al, though. He’s really feeling it. He has a tennis ball-sized red burn on his thigh, well, his inguinal area, with a painful raw blister in the center. I left my mark for now. I like what the oncologist said: “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.