chemotherapy

Step One, All Over Again

~ Lee Swanson ~ 5 Comments

I would say it started all over again this week, but the truth is it never ended. This was just the next step.

My appointment was at 11, vital signs, consent forms and a lot of waiting. Then a little exam room, the familiar upholstered table with a paper sheet.  Lie on my stomach and wait some more.  A lot of idle chatter about the weather and then she jams a sharpened metal drinking straw into my hipbone.  Poke in a needle and draw out some fluid, and then some kind of gizmo that reaches in and snips off some bone marrow. They tell me it’s supposed to be painful. And this time it fulfilled that promise.

Then a band aid and I walk out to the car and drive home.

I’ve had five or six bone marrow biopsies since I was diagnosed with chronic lymphocytic leukemia six years ago. You would think by now they could just go in the same hole, but I guess it heals shut.  Usually my doctor orders a biopsy because he “wants to see what’s going on in the marrow,” whatever that means. This one is a little different. This is a precursor to starting treatment.

If you’ve been reading this blog for the last five years or so, you are a) my wife, or b) tired of hearing the whole story all over again. And there’s a lot of that going around. I’m tired of it too.

I’m in stage four now.

So the next step will be to get the results and then talk about the options. We did this five years ago and he recommended a trial of a chemo combination. It kicked the leukemia back but also left me without a lot of good white cells or platelets. And they never have really come back to normal.

And finally he’ll say he’s especially partial to this clinical trial or that. Because the truth is I’m part patient and part subject and while I’m pretty sure he is choosing the thing that’s best for me, there’s a part of me that thinks he just wants to see what will happen with the newest concoction.

That’s when they drag out the paperwork. There’s a chance of complications ranging from hangnails to death. And since it’s a clinical trial I have to agree to come by the clinic once a week for a blood test.

My preference is to put it off until the first of the year. No one wants to hang an intravenous bag on their Christmas tree. I don’t know what it will be and I don’t know how. But I do know why. Because my doctor says I should. I feel fine, and always have. But somewhere around 40 percent of the white cells running through my veins are leukemia cells. And nobody wants that.

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.