medicine

Thanks For Letting Me Prep You

~ Lee Swanson ~ 7 Comments

One of the many interesting experiences of getting older, along with sore knees and failing hearing, is the invitation from your healthcare provider (read “doctor”) to have a colonoscopy.

After declining the invitation several times, the emails became more insistent until one day the phone rang and a pleasant-sounding woman said she was ready to schedule the exam and would Wednesday work for me. Feeling like a trapped animal, I briefly considered which would be the appropriate reaction—fight or flight—but then fright set in and I meekly said Wednesday would be fine, I guess.

It’s likely that you weren’t aware I was having a colonoscopy, and I’m sorry about that, but the tickets sold out before I could make a general announcement. I’m told there was popcorn in the observation deck.

Popcorn is, of course, one of the many foods I could not eat in the three days beforehand. In fact, I was largely restricted to overcooked vegetables and bananas. I took it as an opportunity to lose weight. The day before, the instructions said to drink nothing but clear liquids, and particularly nothing red or purple. I stocked up on vodka, gin and tequila before I read the fine print.

There was also a video I was supposed to watch that explained what I would have to go through, and what would go through me. I avoided that too, until I got several reminder emails. I’d been assigned a code number and they tracked whether I logged in. Bastards. So I logged in and played the video while simultaneously solving the New York Times crossword. I knew just enough to keep the volume up so that I could click over and answer every time they asked if I had questions.

Wednesday of the longest week finally came and I went in to the hospital. A nurse sat me down and asked all the standard questions. I gave all the standard answers.

“Weight?” “205.” (Down five pounds from the previous week thank you very much.)

“Height?” “Exactly the right height for that weight.”

“Have you fallen in the last six months?” “Not while sober.”

“Have you been out of the country in the last six weeks?” “No, although the last couple days have been like drinking the water in a third world country, so had I know it was an option…”

Here’s something fun to try. Everyone you encounter in a hospital or doctor’s office asks for your name and birthdate. I always say “November 13, 1951, what’s yours?” Without fail, they get a little flustered, and then tell me, because they don’t know what else to say. It’s a bonding thing. Sharing.

Don’t worry, I will spare you the rest of the instructions and processes. I would have rather they spared me the preparation too. Think about drinking a gallon of warm, unflavored Gatorade, and not leaving the house for two days.  Suffice to say getting there is half the fun. In fact, that’s all the fun. The day of the exam they gave me an IV and woke me when it was over.

And that was that, until three days later. I got an embossed notecard in the mail from my health group (read medical conglomerate). Inside were little personal messages from the nurses who had been on my “team.” Now, there are probably hundreds of things they could have written, and may even have wanted to have written, but instead, it was, essentially, a thank you note. “Thanks for letting me prep you for your procedure,” was the most interesting. I didn’t know I had a choice. “It was a pleasure to take care of you today,” and “Thanks for letting me take care of you,” were the others. I imagined these overworked nurses sitting down with a bunch of notecards at the end of their shift and having to write to the patients they had wheeled around all day when all they really wanted to do was go home. If it had been me, I would have given a stack of cards to student nurses and had them write up a month’s worth. And perhaps they did.

There’s been not a word from the doctor who did the exam because, you know, doctors.

I don’t know what consultant came up with this idea, but I found it ridiculous if not hilarious. And let’s just say the notecard didn’t make it into my scrapbook.

Cancer: The Video Game

~ Lee Swanson ~ 10 Comments

Science has always been a subject to be avoided in my life. I took just barely enough science credits in college to meet the minimum requirements, and put in the minimum effort to get through them. And that’s the last thought I gave the subject.

And then I got cancer.

Not that studying the subject on the Internet sheds much light. Most of the research is filed as papers aptly called “abstracts” and that would be fine if it weren’t so real and decidedly non-abstract to me.

And then there’s the problem that none of the abstracts or other material is written in English. Some of it is literally not written in English and the rest of it is not written in a syntax any reasonably intelligent person can understand.

So this week I’m starting a clinical trial with only the most rudimentary understanding of what the pill is that I will be taking and what good it can be expected to do. On the other hand, the 40 page single spaced consent form is pretty good at spelling out in plain English what bad things the pill might do. Fever, sweats, chills, flu-like symptoms, cough, shortness of breath, feeling very tired, vomiting, nausea, diarrhea, irregular heart beat, muscle aches, skin rashes, burning when urinating. Dogs that have taken the drug have seen their hair turn gray and their sperm count go down. Some mice have had hearing loss. And then the big one: TLS, Tumor Lysis Syndrome. This more or less means that the pill does such a good job of killing cancer cells and shrinking tumors that the kidneys can’t handle it all, making uric acid and potassium levels go up so the kidneys and heart stop working. Not to worry, they promise to watch out for signs of that.

The good news is pretty much spelled out in one sentence: Laboratory and animal studies and early clinical data have shown that the study drug kills cancer cells and causes tumors to shrink.  What more do you need to know?

But here’s what I’ve figured out more on less on my own. The pill is called ABT-199 and it apparently attacks the alphabet. They are giving it to me because I have CLL, and one of the things that keeps CLL cells alive longer than your average white cell is a protein called Bcl-2. (I thought protein came from hamburger and eggs,pacman but apparently there’s a little more to it than that). Bcl-2 seems to only attach itself to CLL cells. So, they have pretty good evidence (I hope) that ABT-199 will run around in my veins playing Pac-Man against Bcl-2 and eating it up.  That knocks the CLL cells out of the game. If it works well enough, game over, I win. If not, well, buy more tokens and play something else.

The game starts Wednesday morning. I’ll be in the hospital for two days while they give me the first two doses and then stand back to see what happens. But don’t hold your breath. It’s about a two year study. The good news, when it comes, will take a while.

(Seemingly unnecessary disclaimer: No one should base any decision on, or give any credence whatsoever to the information and opinions expressed in this column.  )

 

Nobody Listens

~ Lee Swanson ~ 3 Comments

Odds are I spend more time in doctors’ offices and clinics than you do. Not that it’s how I really want to spend my day, but they keep inviting me back. Since I have this vast experience it seems only right that I share some of what I’ve learned about medicine.

The first thing to understand is nobody is paying any attention.

Here’s what happens every time I’m in a doctor’s office.

The receptionist hands me a questionnaire which must have something to do with a research project, since everyone gets the same questionnaire and none of the questions pertain to me or the reason I’m there.

It calls for yes-no answers, but I’ve decided not to let that deter me. The first question is, “do you want a chaperone in the room with you?” I check “no” and write “I’d prefer a doctor.” Does anyone want a chaperone, ever? I haven’t even heard the word chaperone since junior high school dances and we didn’t want them then either.

Next question: do you have trouble standing or walking? “Not if sober, which isn’t often, so that’s a Yes.”

Have you fallen in the last six weeks? “See question two”

Are you often confused? This is the only question I answer by just checking the box, and without fail I always check both yes and no.

I turn in the questionnaire when the nurse calls me to go from the big waiting room to the little waiting room, the one with the paper-covered table.  No one has ever asked anything about my answers, because quite obviously no one has ever looked at them.

The nurse opens the door to the inner sanctum and always smiles and says “hi, how are you?” That would be a logical question for a nurse to ask a patient, except that the nurse doesn’t care what the answer is. You can answer anything you want and she will nod and ask you to step on the scale. “I died out there in the waiting room.” “Mmm-hmm, let’s get your weight.” “I’m fine, why else would I come in for chemotherapy.” “Right you are, step up on the scale please.” I know it’s a throwaway greeting, but if anyone ever asked “how are you” and genuinely wanted to know, you would think it would be in a doctor’s office. If you don’t want an honest answer maybe you should ask about the weather.

So the next step is to get my weight and then ask my height. No one has ever actually measured my height. They just take my word for it. Big mistake. First I ask “how tall do I have to be for that weight?” and while the nurse fumbles for an answer I say I’m six foot two, or six foot three or six three and a half. I never give the same answer twice. They write it down on a scrap of paper but obviously never record it anywhere or someone would have noticed by now. “This is odd; you’ve grown an inch and a half since you were here a month ago.” But no one ever says that.  And isn’t it kind of a dumb question anyway?   Has your height really changed much since back in the days when you had a chaperone?   Mine only changes because I’m lying about it.  So I’m going to start really lying and see if anyone even blinks. “I’m five-four, do you think this shirt makes me look taller?”

An hour or two later the doctor finally walks into the room and does listen, some, now and then.  Most of the time he’s staring at the computer screen.  I think he’s playing Angry Birds.

Treatment

~ Lee Swanson ~ 3 Comments

I woke up this morning pain free for the first time in about a month.  My ears were ringing from the ibuprofen and there was a dull ache behind my left eye from the scotch that washed the ibuprofen down.  But the back pain that had kept me awake the last two nights was gone.  And more than that, my swollen hands and wrists were close to normal size and able to open wide and close tight.

Maybe I’d turned the corner.

It was a far cry from just two days ago when the cry was of pain and misery and just plain sorrow.  Sitting in a recliner at the infusion center in the hospital, still wrapped in blankets though the uncontrollable chills had passed, an IV attached to the back of my hand, I was not a happy camper.   “He seems a bit depressed.”

Depressed?  Me?  Why would I be depressed?  I have incurable leukemia, am four years out from chemotherapy for a disease with a five year survival rate of seventy percent.  My bone marrow never really recovered from the chemo and my immune system hovers just slightly above bubble boy.  When my granddaughter came home with an innocent little childhood virus it appears to have picked me as its next victim and threw me on my ass.

My hands swelled up like the Michelin man.  I squeezed the rings off my fingers the first night just before my knuckles disappeared.  My watch that usually hung fashionably from my wrist now clung to it like it was painted on, until I could not wear it any more.  I didn’t sleep much because every time I moved in bed my hands got in the way of something and woke me up.  Throwing the covers back to get up was painful.  My ankles and knees started to ache.  I swore that if this ever cleared up I would go back to doing crunches and exercises so I could stand up without pushing myself off the chair with my hands; hands that aren’t capable of pushing anything anymore.

I went to see my primary care doctor who mostly puzzled over it and ordered some blood tests.  He’s careful about doing much of anything for much of anything without consulting my cancer doctor because I don’t react to normal treatments in normal ways.  (The last time I took an anti-viral pill for a little canker sore on my tongue I was in the hospital with pneumonia for a week.  Seems the pill reduced my white cell count even further and in walked the pneumonia.  Who knew?)

Anyway, the blood test didn’t say anything about the swollen hands but my cancer doctor saw the numbers and called to say he wanted to do a bone marrow biopsy.  Again.  This will help my swollen hands and pain exactly how?  It won’t, but my red cell count and platelets were way down and he wanted to know why.  The Internet says that’s one thing that happens when adults get this virus from kids so it made sense to me, but he was looking for other answers.  He’s all about blood cancer.  And when you’re a hammer the whole world’s a nail.

So we do the biopsy.  Actually the nurse practitioner did the biopsy.  My part is to lie on my side with my legs curled up toward my chest.  I’m used to it, but they always seem to forget they have a hell of a time getting this done on me.  Something about a strong pelvic bone.  The first time she tried to drive the spike into my hip, it bent.  I suggested that maybe she had hit a knot but she didn’t understand.  I guess she didn’t take wood shop.

The results come back and I’m told I have red cell aplasia.  Which means something is preventing my blood from making red cells.  The treatment is intravenous immunoglobulin.  They think.  They’ve hardly ever encountered this before in a leukemia patient.  From what I hear they’re all atwitter over it.  I just want to use my hands again one day.

That gets us back to the infusion center and the IV and the blankets.  See, I got a reaction to the immunoglobulin and it gave me a headache and the worst chills you can imagine. Tears ran down my cheeks.   So here’s a fucking news flash for you—I’m depressed.

I’d be suicidal but it’s redundant.

But then I got up Friday and the swelling was gone.  Today the backache is gone.  I’m going to mow the lawn, clean the pool and after my nap, because I’m still anemic as all get out, I might hit a bucket of balls.

It’s a beautiful day. Let’s go outside and play.