Erratic schedule

I can’t wait to call my doctor’s office in the morning; so much so that I’m up again in the middle of the night!

Well, it’s not quite the middle, as I’ve slept less than three hours, but I did wake up in mid-hot-flash, feeling like I might need some more pain medicine, and now waiting some until the right interval has passed and I’ve burned off a bit more energy.

Medication juggling act: Cancer involves a mammoth effort of pain and nausea management. I’m looking forward to the feedback on how to proceed. I think we’re on the right track, but I want to get back to figuring out whether Gleevec is “my drug” and if so, what’s the correct dosage

Day in the ER

I felt an odd sensation as I slept early this morning; the right side of my face became slack. I was worried it might be a stroke! The phone rang early and sure enough, I could barely speak. I blamed it on just waking up, but it was really the loss of facial control.

I called my doctor and my ex, and consensus seemed to be that it was Bell‘s Palsy, rather than a stroke, but that I should go to the local emergency room to have it checked out. I needed to take medications, but I wasn’t sure what I could keep in my stomach, and I needed to get hydrated, so it seemed a particularly good idea.

I’ll spare the details of a day with yet more doctors, procedures, bad weather, and just getting by. The short version is that I had a CT Scan, chest x-ray, and an EKG - the usual tests - and they came to the same conclusion, that it's Bell's Palsy. Just when it seems things can’t get more complicated, they do. I certainly hope this condition is short-lived; it can be.

My ex continues to be terrific. He spent the morning in the hospital with me, and my older daughter is home with me now to help me through the weekend. I’m ready to crawl back into bed.

Brutal day

I slept pretty well last night; fitfully, but relatively pain-free. When I woke up at 3am I needed to do something to get me back to sleep, so I got up and washed dishes!

By morning, however, the picture had changed dramatically. When my ex called to check on me, as he does every day, I was in a bit more pain, and my energy was so low I could barely move to get to the phone. A couple of phone calls to the doctor, and it became apparent I needed to see her, probably to address a recurrence of anemia.

Fortunately, Thursday is his day off, so my ex drove me to the city for blood tests and appropriate treatment. The lab numbers came as a surprise: No anemia and most counts as good as could be expected. But I was in a lot of pain by that point, and let me tell you: Fighting pain is exhausting!

There are other things going on, of course; I’m taking a huge number of drugs, each with its own influence on blood counts. The juggling act becomes complicated in that some of the drugs make me groggy to the point where I lose track of what I’ve taken.

My doctor, who’d just seen a patient with severe respiratory disorders from Gleevec, didn’t want me to also reach that state; she brought her intuition and recent experience to bear and said, “I think it may be a toxic reaction to Gleevec. I want you to go off it for a couple of days.”

NO!

She saw the panic in my eyes. “Not permanently; we may need to adjust the dose down. Every patient is different, and we have to find the correct level and schedule.”

In the meantime, we also need to get the pain under control. She wants me to be pain-free nearly the whole day, not just the four-to-six hours I’m now experiencing, and not just while I'm sleeping; then we can start cutting back on pain meds to where I’m not so dependent on them. And all this takes time, since changing too many variables at once calls reactions into question.

I left the Cancer Center with a couple more prescriptions, a huge checklist of drug doses and scheduled times, to keep my intake organized, and a lot of advice about how to handle situations like “breakthrough pain” and nausea.

On a more personal note, I’ve been trying to keep this blog up-to-date. In addition to keeping friends informed, it helps me to achieve organization and continuity. But it’s very difficult. The physical and energetic swings come fast and furious, and there are days, even if I can get out of bed, I can’t sit up and rouse my focus long enough to get something written. Tonight, I’m feeling a bit better, but am plagued by nausea and vomiting.

Tomorrow is another day.