New complication

I hope all of you who celebrate it had a wonderful Christmas. And those of you who don’t also had a wonderful down-day. Just a calm warm day filled with the simple pleasures of family, friends, love, and warmth.

That’s what we did: Cast aside any previous complications in our relationships with each other to enjoy dinner with both of my daughters, my ex, my ex’s girlfriend, and myself; a very congenial and caring group.

But today it’s back to reality; my reality being that I can sit or lie down for hours feeling strong and relatively pain-free, but as soon as I get up, or take a few steps, or put something in my stomach, I’m immediately winded and nauseous.

Wednesday I had yet another MRI on my neck and head; another procedure to attempt to explain some of my symptoms. Today I got the test results.

The MRI shows a tiny tumor in my cerebellum. My doctor is “concerned, but not upset” about the turn of events, since the situation is very treatable with Gamma Knife Radiation therapy, they work with a team of radiologists they regard very highly, the tumor is very small, and the size and position of this tumor explain most of my remaining symptoms.

The tumor is located in a part of the brain that controls motor coordination, motion detection, and nausea; in short, deals with equilibrium. They noticed it because, unlike the scan performed in the emergency room last week, the latest MRI contained contrast and included the whole head, not just my neck, producing a very fine-detailed picture.

I will need to consult with the radiologists early next week to schedule treatment. The procedure doesn’t require staying overnight in the hospital, but it is an all-day event, so it requires some coordination to get me to and from the hospital. Fortunately, my daughter who lives in Manhattan will be in town next week, and her apartment is conveniently located near the hospital.

I’ve entered into some scary territory.

On the one hand, there are certainly new risks involved with this new procedure. On the other, in order to restart systemic treatment for the cancer, I need to address the symptoms that are weakening me.

Getting things done

I have a friend visiting today; it’s great. She washed my kitchen floor (that’s love!), and brought me homemade potato pancakes (genetic), built a fire in the fireplace (warmth) and provided wonderful conversation and camaraderie (that’s priceless!).

There were times in our lives when we could practically dash around the corner for a cup of coffee or a drink together, but she lives on Long Island, while I now live in Westchester, so I don’t get to see her nearly as much as I’d like to. We’ve been friends for almost thirty-five years, share a lot of life elements, and we keep in touch regularly via phone.

Things can’t get much better!

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

A better day

I awoke this morning feeling a whole lot better than I have in a long time. For one thing, I slept through the night. And in addition, I was nearly pain-free! My face was less droopy, though not completely so, and it came and went through the day. I’m encouraged from the way the day started that this Bell’s Palsy nerve damage might be a transient condition. The cosmetic distortion is unsettling, but it’s not painful.

My older daughter is still here for the rest of the weekend. By Christmas Day we’ll be gathered again, with my younger daughter, at the home of my ex/her father. His girlfriend may also be there and it should be a quiet, lounge-around day of gratitude, life, and warmth.

I’m so glad we all have this time together. And I’m grateful for the many extensions of love from my very supportive online and offline family.

Thank you and Happy Holidays!

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.

Gleevec: Anecdote

My doctor has a patient who was ravaged by melanoma. The woman had reacted badly to many of her treatments and had reached the end of her rope. She entered hospice, where she expected to last out the rest of her life in relative comfort.

My doctor noticed that this woman’s melanoma had started in moist lesions, but initial suggestions to try Gleevec met with resistance. The woman was convinced her time was up and didn’t want to go through the pain of more experimentation. My doctor, however, prevailed, and the woman started taking Gleevec.

Several weeks later, the woman reports that she is back on the treadmill, back on the tennis court; and best of all, she’s been kicked out of hospice! She knows she’s getting better because her kids don’t call anymore.

Lately I've been thoroughly consumed by pain management and exhaustion management. It finally hit me this weekend, there's one outstanding question: will I respond to the drug? There will be anxiety in this household until I get an answer to that. But in the meantime, I do know that Gleevec is capable of miracles.