I Am Al’s Lymphoma

More specifically, I am Al’s Primary Cutaneous T-Cell Lymphoma. That is to say, I am Anaplastic Large Cell Lymphoma.

Al is a bit fortunate. 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. I don’t, however, consider myself a wimp-phoma by any means. 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 commonly described as non-aggressive, indolent, and slow-growing. I personally find this insulting, but what can I do? I can do my best to aggravate Al.

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. 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 at every doctor that needs 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 has had enough of looking at me, and refers Al to see a dermatologist.

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.

November 22. “Drop ‘em,” (or something to that effect)  says the dermatologist, “ let’s have a look.” She stares at me curiously, as does her assistant. She is doubtful that I am a staph infection. Nonetheless, the decision is made to cut me open and see what I have inside. Nothing to squeeze out, though not for want of trying. I might be indolent, lazy, and slow-moving, but I am one tough 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.  Al is pretty tough also. Two days later, freshly sutured,he goes on a mountain hike, wincing occasionally when he wants some sympathy. Al keeps busy while waiting to hear some innocuous results on me.

December 8. D-Day. Diagnosis time. Al calls the dermatology office to check on his biopsy. 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 received results on bloodwork and other tests by phone, not in person. So, this time, it’s off to see the dermatologist again. Today, she 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 isn’t completely comprehending what he’s being told, either.  “Do I have cancer?” he wonders.  Yes, Al, you do. I am a cancer of your white blood cells.

The dermatology office will now be calling the oncologist to schedule an appointment for Al. They pull the stitches out of me. “Is there anything else we can do for you?” the doctor asks. No, Al has had enough for one day. He thinks about asking to be blasted with liquid nitrogen, as he has been on previous visits, but he isn’t in a joking mood.

So far, nobody is using the word “cancer” when referring to me. However, 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. Indolent, indeed! I’m getting these folks moving, aren’t I?

And so, December 16^th, it is time for Al and I to see an 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.

The bone marrow biopsy is painless. For me. For Al, though, it is a different story. The bone marrow biopsy is performed by sticking a syringe in the back of Al’s hip (“A little sting, here…” the oncologist said. He really did!) and basically forcing the needle all the way into the bone. The doctor really has to lean into it, remarking, “You have good strong bones.” Al is holding onto the table for dear life. Even after the doctor is finally finished, Al has his fingers clenched tightly to the sides of the table. He’s gritting his teeth also. I think Al wishes he’d been given a bullet to bite. Or a shot of whiskey.

The oncologist 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,” and so 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.

I sense 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. Yawn.

Dec 21: Today is the day for Al’s PET scan. Al jokes that he forgot to bring one of his cats. PET, of course, is an acronym, standing 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, his cells are hungry, and 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 basically show me up as “glowing” areas. Wherever I am, they will find me. And 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 is 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 inguinal area, which is where they plan to radiate. Good news for Al, and not-so-good for me. We’ll 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 called 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.

G. Applegary

]]> http://www.applegary.com/2012/02/i-am-als-lymphoma/feed/ 0 http://www.applegary.com/2012/02/intro-to-i-am-als-body/ http://www.applegary.com/2012/02/intro-to-i-am-als-body/#comments Sun, 12 Feb 2012 16:30:45 +0000 Gary Applegary http://www.applegary.com/?p=1179  

Looking back, there’s been a quite a lot of famous bodies in the past several decades. Looking back at a few…

In 1946, Clarence Oddbody stepped in just in time to save George Bailey, and show him what a Wonderful Life he had.

X marks the spot of where the body of Mr. Boddy was found in the 1949 Parker Brothers game, Clue.

In 1965, Milton Bradley also got in the game, giving us a body to practice our Operation skills on, a Mr. Sam Cavity, whoops, make that Cavity Sam.. BZZZZZT! Hey, he’s got my nose..

Beginning in 1967, J.D. Ratcliff wrote a series of articles for the Reader’s Digest wherein different parts of Joe and Jane’s body speak up and tell their stories. This series was very popular; over seven million reprints of the articles were sold, and the 33 articles were later compliled into a book…

“I AM JOE’S BODY” is the definitive inspiration for “I AM AL’S BODY.” It seems some body parts and conditions have not had their say.. until now. Nerdal Ellington Body (N.E. Body), or Al, as he prefers, has come forward. Follow the series “I AM AL’S BODY to hear from Al’s lymphoma, his dandruff, his nostril hair, and the like. As always, we want to hear your feedback - unless you are Al’s bowels.

Thank you!

G. Applegary

Feeling bored? Got nothing to do?

Why not take a trip to the Zanimal Zoo?

All kinds of strange creatures live there,

Like the toeless toad, and the hairless hare.

The zanimals are all ready for show.

Get in your cage and off you go.

The APPLEEATER’S odd looking, I suppose.

Its tail’s not half the length of its nose.

It can reach the fruit at the top of the trees,

Just look out if one starts to sneeze.

No zanimal’s quite as popular as the BANANA EEL.

Everyone just loves it; it really has appeal!

CENTIPOSSUM is quite awesome.

A hundred teeth! Just watch it floss ‘em!

See the befuddled fur-feathered DOGUCK.

He doesn’t know whether to qark or to buck.

The ELETREE is a sight to see!

No branches has he, but trunks, has three!

The FLYING FRONG is chasing flies,

It zaps them with its sticky eyes.

Ever had to go without?

The GORFLER snorts without a snout!

The HOVERHORSE is hard headed, of course.

It thunks into walls, windows, and doors.

The ICE CUB is cool; his fur is like felt.

He stays in cold water so he doesn’t melt.

People crackers make tasty treats

To this JUBBLEJUM with a dozen feets.

Mama KIFFLE has a kite for a tail.

Just see how she and her kiffle kids sail.

Look at that – a LIZARBEE!

Like nothing else you’ll ever see!

Half insect, half reptile.

Watch him chase his tail a while.

MILLIMIRD! She never rests!

A thousand eggs in a hundred nests!

The NUVVERUVVER never ever gets enough.

Two mouths can eat a lot of stuff.

The OORAGNAK hops backwards.

See it? Boing! Boing! Boing!

Good thing it has eyes on the back of its head,

So it can see where it’s going!

Look who’s standing over there!

The fine upstanding PILLAR BEAR!

The QUIPPLE is good to put to use;

You can open cans with its big front tooths!

Next lets stop beside the lake.

Check out the tidy lake RAKESNAKE!

SPACE SMUNKEY seem a little out of place?

Of course! He’d rather be in space!

THUNGS are looking up here – oh my!

They just love staring at the sky.

The UNHUMMINGBIRD never makes a sound,

It’s hard to know when one’s around.

VUMBURGER is always on the run,

Doing its best to stay off of a bun.

WATERWORMS just love the aquarium,

But they’re just as happy if you bury ‘em.

XNARKY doesn’t like company.

His breath is bad – let’s let him be.

YUKYAK is looking for a snack.

He eats anything! Better stand back.

That’s all the ZANIMAL ZOO to show.

Goodbye! Back to Earth you go.

Can’t wait to see this illustrated? Submit your own rendition of any of the Zanimal’s listed and let’s see what we can zoo!

When my watchband went on the fritz, that is to say, started to fray, I turned to the fine folks at Fossil to help me fix the situation.

   As you can see, I was in need of a new band. What better to do than to ask…

  I received a quite prompt response…. 

   And, voila! The band marched into town! Hooray! 

 Even though it looks simple enough to install, I found that my puny skills were not enough, and a visit to the jeweler will be required to put my new band on my old watch. Wish me well! 

G. Applegary