Thursday, August 27, 2009

Take the Ca$h Cab

It's midnight and your nurse comes in for something or other, after which you get up to use the bathroom. Suddenly, you feel very odd, and your nurse sees it on your face. Your heart is beating a mile a minute. We are not figuratively speaking here.

Your nurse calls in another nurse whom she tells to page the doctor on call. The EKG machine is wheeled in and you are quickly hooked up to it. Your heart rate is not just irregular but high, very high. A doctor comes in and does a quick assessment, assuring you that it's probably not a heart attack. Still, you hear a nurse ask if she should get the crash cart. You are suitably terrified.

The doctor explains that she is going to inject you with a drug that will make you briefly feel like you've downed 100 cups of coffee. You can't imagine what that feels like. How bad could it be?

Bad, very bad.

You feel as hot as those 100 cups of coffee, but you also feel like you're about to explode. Is this it? Is this where it all ends?

No, your heart rate eventually returns to a nearly normal and rhythmic range.

Readers, that was me Monday night. After much testing, they're calling it a random event, but I will be taking medication for arrhythmia for a time. Now that your blood pressure is up, let me tell you a funny story.

I was telling my husband about the saga the next day, trying to give as many details as possible so he might have an idea of how I'd felt physically as well as mentally. But instead of saying I heard a nurse call for the crash cart, I said cash cab. We became hysterical, and could not stop laughing.

And to calm any fears you may have about my health, let me also tell you this:

I'm going home today!

Friday, August 21, 2009

White Cells to the Rescue

What every leukemia patient yearns for:
Healthy white blood cells. Thanks Emma!

This week has been a challenging one, downright cyclonic in its gyres and gimbles. As I staggered from one late-night MRI to the next, a CT-scan thrown in for good measure, all I asked for was a bit of unconsciousness.

Only one of the MRI's explained my shoulder pain, a slightly torn rotator cuff, which is likely to heal alone, with some physical therapy. The CT- SCAN showed that I had a small amount of fluid in my lungs, the pain compounded by all the violent vomiting I'd done. The doctors seem unworried but are covering me with a broad-spectrum anti-biotic just to be safe.

If you're wondering what on earth is that white blob I'm nuzzling, Why, it's a white blood cell, approximately ten million times its actual size. When I get enough white cells to effectively battle infection, they start talking about discharge.

Soon my friends, soon.

Saturday, August 15, 2009

More Transplant Fun

I've developed the requisite mouth sores (few transplant patients escape them), which means that only certain foods go down well. I have a mild case of it, so I have to limit myself to soft foods that aren't too hot. Oatmeal, which I fortunately like, but maybe not for long, fits the bill perfectly. Pudding is also a winner, as is cooled chicken noodle soup. Tomorrow, I plan to try a hard-boiled egg. Since I'm receiving supplemental feeding through one of the three lines that dangle from my chest, it doesn't much matter what I eat as long as I keep the system flowing. Otherwise, I would have to re-train my digestive track, much like a baby has to start off slowly adding new foods.

Today I needed two units of blood. This takes about five hours, so I was fortunate that Mariel was here to help me pass the time.

I still have arm/shoulder pain but it seems to be improving. A neurologist came and hammered, raked, and generally tortured me.

Also, I've developed a nasty, itchy rash that has everyone puzzled. The attending physician suggested that it could be gvhd (graft vs. host disease) in a very early stage. Gvhd occurs when the donor cells, seeing the recipient cells as foreign, launches an attack. The doctor was hesitant, however, to prescibe a steroidal cream, so for now, I apply lotion and try not to scratch. Easier said than done.

Transplant veterans know that what I'm experiencing is typical and not overly serious. So put those worry beads away and send me any soothing energy you happen to have lying around.

Monday, August 10, 2009

The Pressure, Oh the Pressure

Everyday my husband asks me if I've blogged today. Well, I did get my socks on by noon.

Don't get me wrong, there's plenty to blog about, but it takes energy, which I seem to have misplaced under the covers. And I love all your comments--heck, we've even managed to flush out some far-flung and feared-lost Canadians we haven't heard from in a long time.

My biggest problem is that my right hand (actually the whole arm from shoulder to fingertip) has been weakened, let's hope temporarily, most likely due to the radiation. I may have to ask Marty to be my scribe, except we tend to fight tooth and nail on grammar issues. Seriously, he is a good editor and catches and fixes my most glaring errors.

Except for the usual and expected issues (nausea, fatigue, bone pain), I'm doing okay. A friend sent a stuffed white blood cell I have suspended from the ceiling, constantly nagging at me to crank up production in that department.

And she sent a book about writing the six-word memoir. We could all use more of those.

Here's mine: Have as few transplants as possible.

Wednesday, August 5, 2009

Darkest Before the Dawn

This will be brief. I have had a rough few days of it--serious chinks have developed in my armor. The cytoxoxin caught up with me on Monday. On Tuesday, I started total body radiation or TBI. It feels like nothing while you're having it, but a few hours later you go comatose and just generally wish you didn't exist. This is a difficult mood to be in when you are surrounded by loved ones, some you're not even aware they're there.

My main problem is nausea. The little I eat returns to haunt me. Once they give me the anti-nausea meds, I sink into a dull stupor, or lose consciousness totally. This is probably a blessing.

A psychiatrist came in to see me the other day. She managed to compress the highlights of my life into about 20 minutes. It remains to be seen where we're going with that, but it appears I've lost some mental acuity with the radiation. I couldn't give the correct date. I failed to draw the hands on a clock correctly, and I drew 4 squiggles instead of 3. I still know my name and birthdate.

I have 3 more rounds of radiation, 2 today and 1 tomorrow. Friday, I get my donor cells.

My job is hard, but Marty's is harder. He has to sit here and watch me suffer. Fortunately, the staff here has been great.


Saturday, August 1, 2009

Small Slice of Sky

I checked into my room yesterday at 4 pm. It's smaller than a breadbox, but has some compensating features such as remote-controlled blinds and drapes. Last time I was here, I had a double-size room with a view of houses on a hillside. This room has a view of tall buildings topped with a dash of sky.

Today has been going well so far. My main activities have been pill-swallowing, pod-walking and reading. They're saving the really exciting event for later in the day when they will pump me full of saline and give me my first dose of cytoxin. Marty plans to be here for that. I plan to be on an ativan cloud floating over the rooftops.