The Lymphoma We Come Across, The Mo Problems We See

I thought I would be writing more. I spend a lot of time on the computer but it hasn't been happening. So I'll abandon any dreams of well-crafted essays and cheat with word vignettes.


* * *


I get chemo on Mondays and take the rest of the week off. I don't have to.

I feel okay for the most part during that week. On Tuesday, I'm pretty tired. I feel like I worked out a lot the previous day - muscles are a bit slow and achy. The rest of the week, I'm less tired, but might take a short nap in the afternoon. So I could definitely work some hours. But there is a staunch anti work from home policy, it seems, so I'd have to drive over there. And it doesn't feel great to drive. And then there's the matter of not caring enough. Am I going to look back on this cancer experience and think, "I wish I'd have worked more?" A hero might, but I won't.

The Monday I return to work, I probably feel worse than I did the previous five days. I stop taking high doses of Prednisone, a steroid, on Saturday, and they say you go through a Red-Bull-like "crash" when you go off the steriods. So I usually work until three or so that Monday and Tuesday, drive home, hit the couch and don't get up for the rest of the night.

Then I'm kinda back to kinda normal until the next chemo treatment.


* * *


I have large diffuse B-cell lymphoma. I don't really worry about my lymphoma that much. I donated forty bucks at Anastasia's Leukemia and Lymphoma Society fundraiser at the Granfaloon six years ago, so I should be all set.


* * *


Chemo has been fine. I show up to the hospital, sit in a recliner, and watch TV and DVDs for the five hours or so it takes to drip the drugs through my IV.

I have not had any nausea. I have not vomited a single time. But, probably because of the largest tumor's proximity to the sciatic nerve that runs down my right leg, I've been having pain in my tailbone and that leg.

Sunday I was on the couch watching football, and I was mad because the game was boring and that score/commercial/kickoff & touchback/commercial combo is real shitstorm, and I was uncomfortable sitting, and uncomfortable laying down, and earlier in the day it hurt walking around the grocery store. My toes had been spasming - as you saw in the previous post - and now it's my calf muscles spasming, and somehow it's making the ball of my foot very tender and I shuffle around like I have a sprained ankle.

So it's hurt to sit, stand, walk, and lay down. Sleeping is complicated.

And in the scheme of cancer symptoms, that is next to nothing. But I am frustrated, even if the doctors think it will work itself out.


* * *


I was prescribed valium for the muscle spasms but they didn't work. Speaking of drugs that didn't work and that you could purchase from me for a very reasonable price...

Before treatment, I had some rough insomnia. Looking back, I can't believe those nights. How can you not get to sleep, and then it's the afternoon, and you still couldn't sleep if you wanted to? What IS THAT?!

I would be on the couch, with the TV on. That served two purposes: entertainment and time measurement. If I did happen to pass out for a bit, the TV could tell me how long I was out.

There is very poor programming on late at night. One night I watched a "CSI" where models were being killed by paint cans. Or something? And I fell asleep for about 15 minutes at the end. So I don't know who the Paint Can Prowler was.

I watched an entire episode of "The Dukes of Hazzard". I'm told it was my favorite show as a kid. I'll say this: the actors playing Boss Hogg and Sheriff Rosco were fucking COMMITTED. The effort they put into a scene involving a malfunctioning popcorn machine was nothing short of heroic. The episode was about mail fraud. Boss Hogg put an ad in a paper promising lots of land in a nonexistent part of Hazzard County. People mailed him a check. A sexy female postal inspector came to investigate, and the Duke boys wanted to bone her. She found evidence of the fraud that pointed to the elderly lady that ran the post office - she delivered the mail around the county on a fast motorcycle. Motorcylin' Granny! Comical. But the evidence was planted by Rosco, and the Dukes had to hide Granny while they convinced sexy inspector that Hogg was to blame. Granny really wanted to bone down on Uncle Jesse, much to his dismay. There were about three car chases.

I was really disappointed in the History Channel during my insomnia. I feel like they should be airing stock footage of blenders being manufactured during the wee hours, so some other Modern Marvel.

I was prescribed Ambien. I was told by those who had taken it before to get completely ready for bed, swallow the pill, and immediately jump in bed before I'm rendered unconscious. I did. I lay perfectly still, and started to feel the drug go to work. I felt like it was dragging my brain down. Down down down. Down toward sleepyland. Still moving down. Still have the feeling of my brain being pulled into the sleep abyss. Still trying not to move. still waiting to be unconscious. How long have I been being pulled down? I don't feel that pulled anymore. If I open my eyes it means the drug won't work and I'm screwed. But I have to move my body now it's been like this forever. Whoops, it's been an hour. I feel normal again. Very awake. Goddamnit.

The doctor said we could try Lunesta - it worked a little differently so maybe it would do the trick. The same thing happened. Bonus: it's not a generic drug yet, so Kim got to pay $100 or so at the pharmacy.

I've been asking around and I haven't found anyone else who has defeated Ambien and/or Lunesta.


* * *


Aside from one really good cry, not many tears. I did have several start-to-tear-up moments that did not materialize to full crying. Those episodes were triggered by:

The Jayhawks - "Smile"
Frightened Rabbit - "Foot Shooter"
The New Pornographers - "Go Places"
Benji Hughes - "Country Love"
The Antlers - "Putting the Dog to Sleep"
The opening minute of the Pod F. Tompkast (as previously documented)
The performances of Christian Bale and Mark Wahlberg in "The Fighter"
Johnny Giavotella's family's reaction to his first major league home run
The "How I Met Your Mother" episode where they attend Marshall's dad's funeral


* * *


Chemo can cause peripheral neuropathy, or numbness in fingers and toes. Currently I have slight numbness in my fingers. I don't notice it much, but two days ago I was opening a bottle of medicine and got the lid off no prob but I couldn't pull the paper safety film thingy off. "Oh, so this is what it feels like to be one hundred years old," I thought.


* * *


I was mailed approximately forty cards in the few weeks the word got out about the cancer. My coworkers cooked me food and delivered it to my house, and some of them pooled some money and bought me an iPad. They bought me an iPad for my cancer. This gift was roughly four times as expensive as what the same group contributed for my wedding present. I took it back and used the cash to purchase most of my new Panasonic Viera plasma HD television.

People have been super nice to me, and looking back I try to remember when I did similar nice things, but I think I've just been the guy that calls people and talks to them.


* * *


When I'm crashing from the steroids, sometimes I notice I can't speak as quickly as usual. I'll be thinking of a word, and find it, and the process to move it from brain to mouth takes twice as long as usual. There's something called "chemo brain" that people talk about and maybe this is what it feels like. I hate it. I always thought that I would hate living somewhere I had to speak a foreign language, because even if I learned to speak that language I fear I wouldn't learn to be quick and witty in that tongue.


* * *


You would think that losing your hair would make it easier to pull the glasses off your head, but no. The bare scalp has more friction than hair. Lame.


* * *


For the past four weeks or so the only way to sleep well is on my couch, on my right side so there is pressure on my right leg and foot to keep them from tingling or spasming too much. I like my couch - sometimes I'd sleep on it for funsizies back in my single years - but it is a big official bummer to say goodnight to my wife and walk away from our bed and down the stairs to the couch.

And while I'm no longer having insomnia, I'm not getting great sleep. I get a solid seven hours, I think. I can't remember the last time I slept in. I'm really looking forward to staying unconscious for an obscene amount of hours someday soon.


* * *


I was looking forward to this "50/50" movie where Joseph Gordon-Levitt gets cancer and pals around with Seth Rogen, but then I got cancer and now I don't have hair and now I don't want to be the cancer guy watching the cancer movie. "Hey look this subject matter speaks to that hairless man," theatergoers would think and probably say out loud during the entire running time of the feature film.

Toe Talk

Try to wiggle your fourth toe and ONLY your fourth toe. Can't do it?

I think I can pinpoint the problem - your right calf muscles haven't been twitching for the last several days, and the involuntary spasms aren't somehow causing your fourth toe to curl.



It hurts, but not a lot. Very annoying, though, especially around bedtime. Typical lymphoma stuff. I guess?

(Incidentally, if anyone CAN wiggle their fourth toe by itself, I am VERY impressed.)

Hair Ye Hair Ye

Almost everyone loses their hair due to chemotherapy. Uh, of those people who receive chemotherapy. Good first sentence. Great start. All-Star form right off the bat.

So, duh. You've seen a movie before, and you know that people lose their hair when they are given drugs that disrupt rapidly growing cells. You might be surprised about what order your hair disappears - why is my ear hair holding on strong, but my nose hair not so much? Why do I even have ear hair? Is that the grossest hair I have, or is it the little strands the grow up through the two moles on my right shoulder? Do you love reading my blog?

When the lady at the hospital went over our "Welcome to Cancer" booklet or whatever, the subject of hair came up and she asked if I was concerned about losing every bit of hair on my body. It was an easy "No". I've got bigger things to worry about, yeah? But I'll admit some disappointment when it started to leave my scalp, primarily because of the WAY it fell off. It lost its will to stay anchored. When watch yourself in the mirror, easily removing chunks of your hair from your head, you feel pretty strange, because that's not what hair is supposed to do. I wondered if it was a Samson-type thing, a virility thing, but I think I figured out why it makes you feel so weak. It's because you look like Steve Guttenberg's character in "The Day After"


(Watch the scene - filmed in Allen Fieldhouse!)

Of course you're going to feel discouraged if you remind yourself of Steve Guttenberg! I mean, the man is a star and a legend, but his Icarus-like journey can be too much to contemplate. You've got to re-frame the situation. The Mom approach is to show you've been here before.



After a brief flirtation with Captain Jean Luc Picard, I decided to adopt a more modern and real role model for this hair phase. With thanks to Shawn's photoshop skills, I fear that I am ordinary, JUST LIKE EVERYONE:

Very Chairy

Remember how new and classy my new office looked?

Well, when you need a very cushioned surface before you can comfortable sit in a typing posture, your room looks a bit less classy.



The chair of unknown age and origin is on loan from my next-door coworker. "Please take it so people will stop hanging out in my office," she said. She's fun. (She really is.) I brought the beige pillow in from home, and yes, I was daring anyone I passed on the way to the second floor to make fun of the guy carrying the large cushion to his office.

This isn't really new to me, but now that I have such an excellent excuse to walk slowly in the hallway or take use the elevator to move one floor, I'm on edge about possible challenges from strangers.

"Feelin' lazy today, huh?"
"Yeah, I took the stairs earlier today but the chemotherapy makes me tired."

You know. My mind is cluttered with possible retorts. Let's hope I get to use a few.

Worst Bucket List

I had the idea to make the world's lamest Bucket List after I saw a commercial for Keno. I enlisted Shawn's help and here's what we've got so far:

1. Learn to play Keno
2. Learn to polka
3. Read the novelizations of the "Back to the Future" films
4. Write a comprehensive history of German comedy
5. Try every fountain drink offered at Quik Trip
6. Sail across Lake Huron
7. See the Blue Man Group
8. Pet a horse
9. Read a Danielle Steele novel
10. Learn to speak Welsh
11. Get a tramp stamp

Love Buzz

Today Kim buzzed my hair, and I shaved my biopsy beard. We documented the whole thing, of course.


gif from picasion.com

My captions are as follows:

1. Let's do this!
2. I have too much hair.
3. I have too much beard.
4. When I'm not stealing meth, I'm wrenching with my dirtbike.
5. Where did I put the fourth graders' dodgeballs?
6. Last time I rocked this cut I played tee ball and drank Shasta.

Back From The Honeymoon

I started writing again on Thursday, July 7, but I ran out of steam before anything was posted online:

Man, it's been a while. Been busy, dudes. Been pretty busy. Went to Ireland. And Northern Ireland. Annoying that you have to specify both, but that's imperfect post-WWI treaties with the British, I guess.

I've also been busy being sick. Sick? Injured. Pained. On May 10, I sat through a four-hour meeting at work. Afterward, my hindquarters felt sore. (HAHAHAHA GAY!) That's not an unusual feeling for me (HAHAHA COULD YOU BE ANY GAYER GAYWAD??), as my haunches are tiny and poorly padded -- I was never very comfortable when sitting for long periods, so some pain was not out of the ordinary.

That night, my back hurt badly enough that I skipped my weekly basketball game (WITH ALL DUDES, HANGING OUT WITH SWEATY DUDES AND BALLS YOU'RE A TOTAL GAY!). The pain subsided, then migrated down to some upper leg muscles, then felt better a few days, then the reset button was punched and more back pain was followed by more leg and tailbone pain. On Sunday I'll celebrate two months of chronic pain! (During this time there have been many visits to physical therapy, where I am consistently surprised and saddened to think about the vast number of people coping with constant pain in the world.)

(Can you do two consecutive parenthetical expressions? Fuck it, I'm doing it anyway! I actually played basketball the week after I'd bowed out, and we only had enough personnel for 2 on 2. My right leg hurt, particularly when I would bend my knees during the first motions of a jump shot, but the muscles warmed up enough for me to play normally. Normally? Spectacularly! I never lost a game, and in the final game I scored 18 of my team's 20 points. The final shot was a dn staple, driving right toward the top of the lane, then spinning clockwise on my left leg before rising, floating (in the sense that a white 31-year-old with limited physical prowess "floats"), and releasing a perfect mid-range jumper. The pessimist in me thinks of this as a decent end to my underwhelming but highly enjoyable basketball career.)

So. The grim specter (specters are ALWAYS grim) of nerve pain has seasoned my past few months, which happens to include my honeymoon journey. I will be writing about the fun and interesting aspects of the journey soon. For the moment, though, please let me show you my map of pain.

[stopped writing for the day]


* * *


On Friday, July 8, I had a CT scan first thing in the morning. Before I had made it home with my three Muncher's Bakery self-pity donuts, my doctor's office was calling to schedule another appointment. The nurse wanted me to come by in a few hours to discuss the scan results. Since my everything still hurt when I drove, Kim agreed to take me.


* * *


We started the puzzle that weekend, as a way to pass the time until Monday's biopsy. I activated my mp3 player to start the live recording of The Pod F. Tompkast.

"It's nighttime on the internet...
...a graffiti artist suspects an E-Harmony profile of deceit...
...a 2,000 year-old vampire views her Netflix queue with disgust...
...a raccoon Googles 'raccoons'."

Kim was above the puzzle at that moment, and I was walking to the sink to fetch a glass of water. "Raccoons" had barely emitted from the speakers when I began to well up. I'll never understand why. It just seemed like a perfect joke - maybe my mind raced ahead to consider how much additional perfect humor I could miss out on.

I calmed myself and took a drink.


* * *


The biopsy results took a long time, and we were finally told the lymphoma was malignant, as we'd expected. It was several more days before we could meet with an oncologist, who assured us the scenario was far from worst-case, and that chemotherapy should treat it sufficiently. There was a heart test, a PET scan, blood tests, a bone marrow biopsy - every time we walked into the hospital they found another reason to perform another test. The final summary:

Large (~10 cm) mass in right presacral space, pushing against muscle and the sciatic nerve.

Smaller masses nearby, all below the diaphragm, all of which can be managed simultaneously without extra treatment.

Up to 6 rounds of chemotherapy, starting Monday, July 25.


* * *


When I was a kid, I would fantasize about having cancer. It wasn't because I needed an in with the Make-a-Wish racket - I wanted to be an inspiring, famous person that courageously beat the odds. It was weird, especially considering that person already existed. His name was Sterling, he overcame brain cancer, and he was in the class above me. We played summer baseball together.

I never liked the analogy of cancer management as a "battle". Fighting is reserved for an odd assortment of diseases, and if you've got diabetes or malaria you're somehow not a soldier, just a participant. I don't feel like I'm in a battle with cancer, which is great, because I've always considered myself too much of a realist to fill the shoes of a brave soldier. Fight or flight? If given an option, I'd apologize to cancer, sign a treaty, and retreat back to safe territory. I am intimidated.

But there is no option. A month ago Kim and I were exploring Ireland. Monday they try to shrink my tumor. Life is overwhelming and impressive even when it's threatening.