Sunday, March 27, 2011

Bone metastases, henna head, and the senses

Dearly beloved,

So when you last rejoined me, I was waiting to talk to my oncologist about the latest PET scan. I get copies of things like radiology reports these days, but perhaps there's a reason they generally don't release these to patients - I almost always interpret the news more harshly than my physicians do.

The latest one was a real mixed bag - all the new lymph nodes were smaller in size - responding again to the same chemotherapy - but some of the bone metastases were up, and some were down. In addition, there were two new ones, putting the total count up from 11 to 13. Eight in my spine, one in a rib, one in each hip... and now another rib and another spinal.

NB - I am more freaked out by bone metastases, currently, than by brain stuff. This is probably because the brain tumors are old, and the bone mets are new. But my doctor says he's more concerned about brain mets. And he is, over and over again, the expert. I hate worrying about my personality or ability to think changing, it's true. Even more, I fear being trapped in a body that has completely failed. A wheelchair. A broken hip. Not being able to draw, to dance, to walk...I know it's trite, but I don't really fear death - I fear a cage. Or call it being buried alive. I've told Kevin, if I am alive, but non-responsive, do not wait a month. Wait three days. Imagine I am trapped inside, and that all I want is for you to let me go...

I know, harsh. We don't talk about this, in this Happy Face culture, but think about it. What do you really fear? Have you communicated this to your loved ones? If not, DO. I have a mutual pact with another cancer survivor, that we will unplug each other if it comes to that. He fears the cage as much as I.

OK. Back to the main topic.

Wonderful Dr. L exlained that they don't use PET scans or bones scans to measure progression (worsening of the disease). All a PET scan does is measure glucose uptake. So an increase in uptake CAN be cancer cells - but it can also be a bruise repairing itself, or the bone repairing itself. Darn those little osteoclasts and osteoblasts anyways. So some of the bone mets were up, and some were down. The response to the chemotherapy is better interpreted from the lymph nodes.

So. Good news, and I finish this chemo. We know I am still at least somewhat responsive to this chemotherapy, and we can continue to use it. Good for me, since I lobbied heavily for it, mainly so it slows the loss of nerve endings in my hands and feet.


On the up side, someone asked me a REALLY good question recently. Our divine Miss M, a young dancer who I would identify as an old soul if I believed in that stuff, asked me what HELPS endure the cancer and the treatment. My first, off the cuff answer was touch.

Part of the challenges of cancer treatment is, and you probably knew this, constant physical suffering. I go to something obscene like anywhere from 1 to 5 doctors' appointments per WEEK - and they always ask if there's pain. I think about it, and say, yeah, sorta. And then they ask, on a scale of 1 to 10? I usually say 3 or 4, since I know if I say 6 or above they will have to try to "cure" it. But the truth is, there is pain all the time. I just am oblivious to it, to the extent I can be. My pain tolerance has always been high, and I suspect now that it's close to being off the charts. But fighting pain is exhausting.

And, my body turns into what I'd have to describe as a rag bag. Not only pain, but Other Unpleasantness. Reflux. Nausea. Skin lesions. Wounds that won't heal. Other digestive malfunction that I will let you imagine for yourselves. Swollen feet, and lymphedema, which is pain and swelling in my right hand and arm. Neuropathy in my feet, which in English means constant pins and needles, or when it gets bad, burning. As in, I will happily put my feet in a bucket of ice for 20 minutes if it will get me two hours of relief, or let me fall asleep. Trivial each in their own, possibly. When you are enduring most of them all the time, and expect ALL to get worse over time, perhaps not so trivial.

So it's easy to forget that a body can feel pleasure as well as pain and discomfort. This is where feeding the senses comes in. TOUCH. SMELL. TASTE. Cooking with fresh basil, trying to differentiate a "melon" overtone from a "citrus" one in a champagne - and a red wine DH would love - overtones of "chocolate, espresso, and porter". The stout drinker's wine...

This has been a great week for the sensual reminders in other ways. Several people took me out to lunch for my birthday. Gorgeous Thai food, gorgeous american fusion in St. Helena's, between red wine and champagne tasting. I went also, lush that I am, to a tequila tasting, which is great because my stomach won't tolerate spirits. But, for some strange reason, it doesn't mind wine, hard cider, or agave - I can drink tequila (in small amounts) and margaritas. Apparently it can differentiate plant and grain spirits, smart gullet.

And the divine Miss M and Tess hennaed my baldy old head on my birthday, and it's the sort of thing that puts me into a happy semi-coma - head rubs bring out all my extant cat senses. I must, at some point learn how to purr.

So there's the advice for the week about your friend who is dealing with a chronic disease - what feels GOOD? Then go for it. A foot massage, a head rub, a wonderful dish, a glass of champagne. Feed the up side of that bodacious bod.

Love to all,

Wednesday, March 09, 2011

And now for something completely different

Dearly beloved,

Not really anything all that different. Just the latest update on the cancer treatment. Fourth bout of chemotherapy, eighth treatment. Surgery, radiation, two gamma knife surgeries. I'm going to run out of fingers to count on fairly soon.

This chemotherapy is not typical. By far the worst round was the first one, and it was the reaction to the Zeloda - a bone med. This most recent round was the third in a series of six, and I tried really hard to take it easy over the weekend. Amazingly, it worked, and I had a fairly easy day yesterday (day 4), in spite of the fact that I did ballet in the morning, went to work, and ran errands. I also took an hour of down time between ballet and heading to my office, which I don't usually do. I am almost getting the hang of this after five years - sitting still has never been my long suit.

So I'm now half way through this chemotherapy. I'll have another PET/CT scan in the next week or so. If I'm responding (cancer visibly going away), we finish this chemo, which will go until May 3, and then I get a break for a while. If there's not much change, I'll switch to a different chemo, probably Xometa, which is an oral chemo drug. If it looks nasty, and the cancer has progressed, I'll go on two - Xometa and Gemzar. More likely to get a response, but more side effects. Let's hope the PET scan looks good.

The most recent PET scan had one anomaly - the bone stuff was pretty consistent in glucose uptake, except for one, in my left hip socket, which was much higher than all the others. My wonderful family practice doc asked the right questions, and we realized that I had taken a really hard fall the week before the scan, and landed on my left elbow and knee - one the sidewalk outside of the grocery store. Very dignified. (And tore a hole in the elbow of my favorite cashmere sweater, dammit.) But the hip socket, we hope, was just a bruise from the fall, rather than another bone metastasis. From what I understand from the Metastatic Breast Cancer Babes, hips tend to be the place where you feel pain, because of the weight bearing. So I'm curious to see if the numbers go down, particularly that one.

I also saw my neurosurgeon yesterday, and that is mostly good news. Biggest one is that I can wean off of the damned steroid! Hurrah! He and I talked about it, and apparently when I get down to half a mg (I'm at two) I'll switch to hydrocortisone, or something? As one doctor friend pointed out last summer, my pituitary has apparently forgotten how to work, and needs to be noodged to start working again before I go completely off of the steroid. Amongst other things, I remember back in December when I was decreasing the dose, and there's definitely elements of withdrawal, much as I hate the side effects. The neuro said if I decrease too fast, I'll feel like hell. His words, which was pretty funny. Out of character.

Why do cancer docs get more human as they treat you? I thought this guy was a pretty cold fish the first few times I met him - young, handsome, a neurosurgeon (no ego there) and gay as a tree full of monkeys. He didn't seem to have the vaguest interest in me, although apparently, like everyone else on the world, he liked Kevin's accent.

But i managed to break through the facade on this visit. I made a wild guess, and asked him if he was the one in the practice interested in architecture and design. He lit up, and said yes, he's been remodeling his house here in Sac for years. I laughed, and said that Metropolis magazine was not the most common doctors' office waiting room reading. I also got to have my vitals taken by Sergio (unprouncable last name), from Russia, whose accent I want to steal. I guess I spend so much time in doctors' offices that I have to take my fun where I find it. It also turns out the neurosurgeon is mostly unavailable because he is only in clinic two half days - all the rest of the time he's doing surgery. Can you imagine spending four days a week cutting people's skulls open? I can't.