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.

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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,
grundoon