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.

Gleevec: Explanation

I was talking with a friend about my previous entry about Gleevec, and found she’d come away with some confusion, an unintended interpretation. I’ll try to put my own understanding into better perspective and explain a bit more clearly.

Results of initial Gleevec testing with CML (Chronic Myeloid Leukemia) came as a surprise to researchers. Ten years ago they were only looking to verify its safety to test on people rather than its effectiveness; they weren’t expecting to find such high response rates in such early trials. But what they saw drove them to look at the patients more closely to see what was common about them. That’s when they discovered the “Philadelphia chromosome”, named for the lab where it was discovered. This chromosome malformation they had discovered led them to identify the first protein identified as a cancer-causing agent.

When they looked around at other cancers, they found similar reactions and high occurrence of the defective chromosome with GIST (Gastrointestinal Stromal Tumors). Soon after that, the FDA approved Gleevec for use with CML and GIST, making the drug commercially available.

In the meantime, other researchers in other types of cancers jumped on the bandwagon. Maybe they’d find a similar genetic mutation and the high response rates in their disciplines as well. Some of those other researchers, of course, dealt with melanoma.

There are experimental trials currently underway with melanoma to prove the concept. In order to get into such a trial, the drug company requires a four-week genetic workup to identify presence of the deformity. But the doctors on the battlefront have their own anecdotal evidence to identify who is most likely to be receptive to Gleevec treatment. My doctor and her geographically far-flung colleagues have independently observed that melanoma patients whose primary lesions start in two different ways tend to be the best candidates, while other, more “traditional” forms of skin lesions don’t usually respond. The responsive cancers start in moist places of the anatomy, or on the palms of hands and on the feet.

My doctor added her own 2-plus-2 and realized that I’d be an excellent candidate for Gleevec. She didn’t want us to wait four weeks for the drug company to come up their own verdict about me when her own intuition told her to go ahead. We were able to start me on the drug right away because it is commercially available.

Jewish penicillin

Generations of Jewish mothers have believed that chicken soup has restorative powers. And if it doesn’t, so can it kill you?

My latest doses of the remedy have come by way of my ex. Last week he brought me a quart of wonton soup, a modern day, Chinese-American variation, and he laughed when he saw the way I guzzled and relished the delicious broth.

This evening he called as I was out picking up a prescription and informed me he’d just made a big pot of his own delicious version. Would I want to stop by for some on my way home?

I did. And it was truly wonderful. I had dinner of salad and chicken soup with him and his girlfriend. They treated me royally.

I need to say a few words about my ex.

Divorce isn’t easy… no kidding. I’ve never regretted ours, though it hasn’t always been easy in the last ten years since, or especially in the years leading up to it. But it gave both of us our lives back and allowed us to become better friends.

The past several months I’ve had some very serious problems to deal with and he has been a tremendous help to me. I had to come to grips with some of my own demons in order to ask for and fully get his attention, but once I did, he was there.

Most recently, he has been extremely concerned about my health, and helpful beyond anything I would have expected at less stressful times when it's easier to keep at arms length. He picks things up for me, brings me food, drives me places, and sits and keeps me company when he sees I’m ailing. He’s observant and smart, and knows firsthand what kind of distress I’ve been in, and he’s reacted empathetically. In short, he’s been terrific.

This should come as relief to some of you who have heard anecdotes about some of our less pleasant interactions. His behavior can leave people scratching their heads, but I’ve always believed in his basic decency (well, almost always). The past months, and the chicken soup, have brought that home to me very clearly!

Catch-up: More pain and tiredness at home

Thursday morning I was still high from my infusion of steroid the day before. My back pain was greatly reduced, but I was very anemic, causing a push-me-pull-you kind of effect. I’d bend and reach and stand and everything seemed okay. Then I’d take half a dozen steps and collapse, winded, against a wall.

I was already scheduled for a blood transfusion this morning to address the anemia. I didn’t sleep well last night, or nearly long enough, so by the time I arrived at the Cancer Center, I was in such agony that we had to deal with the pain first before getting on with the transfusion.

Another cocktail of intravenous drugs: steroid, Dilaudid (said to be a Lenny Bruce favorite), anti-nausea, hydrating fluids, followed finally by two units of blood. I was in the Center all day, drifting and dozing and accepting the mix of fluids into my body.

Now that I’m home, I’m very much needing to sleep, but wanted to get some information up here first that I know some friends have been waiting to hear.

There will be more tomorrow….

Catch-up: Off chemotherapy

“You’re not getting chemo today.”

For a variety of reasons, my doctor pulled the plug on this latest course of chemotherapy treatment. Wednesday’s blood labs showed low platelets again, which alone would have postponed this round of treatment, but in short, I haven’t tolerated it well at all, and it’s not working.

But that wasn’t the whole reason. My doctor was grinning.

“I was hit with divine inspiration. There’s a new drug. It’s experimental for melanoma and I can get you into the next round of study, but there’s a four week wait while they work up a genetic profile to see if you meet the criteria. I don’t want us to wait and we don’t have to. The drug has been approved for other forms of cancer, so it’s available commercially. I just wanted to talk to you about it first so I can have it overnighted to your house and you can start taking it tomorrow. I guarantee, by the time they can get the study done, we’ll know by your response if you fit the profile.”

She then proceeded to tell me about Gleevec.

Gleevec is not chemotherapy. It’s not toxic, has minimal side effects; it doesn’t cause you to lose your hair. It’s a drug that takes a different approach. Instead of targeting cancer cells and everything else in its path, it goes after specific proteins exhibiting a particular genetic mutation. A high correlation of response was initially noticed in patients with Chronic Myeloid Leukemia (CML) and certain gastrointestinal tumors (GIST), which tend to exhibit these defective proteins, the first case of proteins known to cause cancer.

Now here’s the kicker: studies are underway to find other cancers that exhibit the same type of genetic abnormality. In the case of most melanomas, Gleevec has no effect. But various independent studies have shown that there are a couple of forms of melanoma that start in “non-standard” areas, which do tend to have the defect. The first type is in moist areas of the anatomy, such as sinuses, mucosa, and vagina. The second type is when the primary lesion is on the palms of the hand and on the feet. If you remember, my initial lesion in 2002 was on the side of my heel!

My doctor’s excitement about this new drug is contagious. I took my first pill last night. There’s so much more to write about it, but I need to get some sleep tonight. Look for new posts tomorrow.

Catch-up: Doctor visit on 12/10

So much has happened in the past couple of days, it feels like a week has passed since my last post, so I’ll probably have to break this up into multiple entries.

I was due to see my doctor on Wednesday for treatment and to discuss scan results. When she walked into the examination room, I was curled up on the table, asleep.

“This isn’t you,” she said, shaking her head.

“I’m exhausted all the time,” I explained. “and in pain.”

I told her about my experience with Advil the previous afternoon, how two little blue gel pills had done more to address my pain than the morphine I’d been taking for a week before.

“It’s obvious the pain is inflammatory. We can fix this.”

She had already included the usual dose of Decadron in my premeds, and she prescribed the same steroid for me to take in pill form at home on a daily basis. Steroids are longer acting and don't interfere with clotting, as ibuprofen can. When we begin to see reduced inflammation from the steroid, we can also start tapering back the Fentanyl patch dosage, since it's not a good idea to alter too many variables at once.

Also, Fentanyl is a strong, addictive, narcotic, and we’ve all read stories and seen movies about “cold turkey.”

So for now, we just add daily steroid.

Drugs

The last few days have been more misery for me.

When I reported how much pain I was in, the doctor recommended I replace my anti-inflammatories with yet more narcotics. She gave me a prescription for a drug called MSIR; that’s Morphine Sulfate Immediate Release. I’ve been taking MSIR for about a week, and the pain didn’t seem any less. The more I took, the groggier I got, so I limited myself to one pill a day. Walking became more of a chore. I was exhausted, achy, and less and less able to function. But at least on one pill a day I was able to stay awake for six to eight hours at a stretch.

I was scared.

This evening, before my first nap of the day, I took two Advil. When I woke an hour later, my pain was greatly diminished and my head a whole lot clearer! What a relief to make this discovery. I knew I was reacting badly to the morphine, but I didn’t realize the extent to which it was robbing me of my vitality.

In a conversation with my ex earlier today he recommended that I not drive. He was concerned that my reflexes and reaction times were slow and that I was a danger to myself and others. Although upsetting, I had to agree with him. He offered to drive me to the train station for my doctor’s appointment in the morning and I sadly agreed to the arrangement. Post-nap, I now feel that my head is clear enough that by morning I’ll be able to drive myself!

I will, of course, discuss all this with my doctor. And I plan to stay away from morphine!

Aftermath

By the time I got to Grand Central yesterday afternoon after leaving the client, I was Cinderella and my gown was starting to shred. By the time I got home I could barely walk again.

Per doctor’s orders, I increased the dose of my pain patch and got into bed at 7:30. I didn't take an anti-inflammatory before falling asleep, hoping the patch would do it by itself, but I woke during the night in a great deal of pain, so I took a Naproxen then. I was in pain a lot of the night, but managed to sleep until 10:30am when I woke up groggy and still in some pain after more than fourteen hours sleep!

My doctor says I probably overdid it.

The doctor’s admin just called to let me know she’d gotten the next scan approved and scheduled for tomorrow afternoon. She’s the greatest at getting things done!

So it’s been another lost day: naps, pain, lack of focus. I hope we can get to the bottom of this soon.

It worked

I’m so grateful for the drugs I got yesterday; I couldn’t have gotten through today without them!

I got up really early to finish preparing materials for my class, and I was on my feet a good part of the day from 10am to 4pm, presenting new skills to a very mixed group of nearly twenty students, and walking around to help those who had trouble getting it. A lot of up-down-sit-standing. I’m tired and achy now, but not nearly as bad as I was a few days ago.

I'm "coming down" from the steroids, but I actually feel kind of high through the haze of tiredness; it feels so good to feel productive again!

Feeling some better

When I got to the City this morning for my appointment, I had to take a cab to the Cancer Center. I usually welcome the exercise, but this was the first time I was unable to walk the ten blocks from Grand Central.

The nurse who took me in looked twice. “You don’t look so good.”

“Is my color grey?”

“You’re very pale.”

She sent me down to the treatment floor while the lab tested my blood. Sure enough, I’m anemic, very much so. My hemoglobin counts were almost low enough to consider a blood transfusion! That accounts for some of the tiredness. And it occurs in reaction to both chemo and melanoma.

I got a massive infusion of “fluids” in addition to the steroid. And at the end I got a shot of something that boosts red blood cell production.

I left with prescriptions for more and stronger pain patches, a new anti-nausea drug, Reglan, an increased appetite, and a confidence that I can get through tomorrow without passing out.

Lost a month

I slept through most of November. Serious sleeping. Twelve hours a night plus another three to four hours of naps. The only place I could get close to comfortable was in bed. I’d get up and walk into the bathroom, my office, or downstairs to the kitchen and be completely winded. The effort to remain upright made me nauseous. Sometimes I just lay in bed listening to the radio. (But how many times can you hear the same sordid news stories without going crazy?!) I didn’t have the focus or concentration to do much of anything.

And I was in pain: lower back, shoulders, upper arms, thighs, and occasional shooting pains through my spine.

It was a lousy month, culminating in exhaustion throughout the Thanksgiving Day weekend.

There were good things about the weekend, of course. My daughters were home and we all shared quality time. I lay on the couch and gave directions while my younger daughter baked a wonderful pumpkin, cheese fondue appetizer for the holiday meal. My daughter drove us to New Jersey for a terrific meal and a day full of family, love, and warmth in my niece’s home. While others drank wine, I filled up on some of the best apple cider I’ve ever had, made by my younger daughter and her boyfriend with their antique cider press. Thanksgiving is my favorite holiday!

But by Sunday I was in tears. I’d expended more energy than I had in weeks and I was paying for it. I contacted my doctor via email and told her how I felt. I asked to come into the office on Tuesday for an infusion of steroids in order to get me through a client commitment on Wednesday.

“Sure,” she said when she called back, “and I want to have you scanned sooner, rather than later.”

I’d been scheduled for my next scan on December 31, but all of these unexplained symptoms were a surprise. Were they from the chemo? From the Fentanyl pain patch? From the melanoma? She’d been expecting me to feel better after my second infusion on November 12 but here I was, in pain and getting weaker and more listless. I could hear the concern in her voice.

So the plan is to go to the office for steroids and rehydrating fluids tomorrow, in order to shore me up for the client presentation on Wednesday.

In the meantime, I increased the dose of the pain patch last night and was pleased to find it made me feel better already. Well, that’s a little misleading. I got up in the middle of the night to go to the bathroom and was surprised at how little pain I felt. I wasn’t winded. All good, until I got to the bathroom and was overcome with nausea; I vomited before I had a chance to take an anti-nausea pill. In the morning I woke up nauseous again.

One step at a time.