Thanks to all who commented on my blog so far. Sorry for taing so long to approve the posts. Chemo is a time sink and an energy sink.
Watching television is about the only thing one can do some days. I am stunned at how many health-related ads there are on television. Drug after drug, bits of equipment (“we’ll bill Medicare for you”), catheters and Diabetes devices, to name a few. But I am most stunned that hospitals are advertising. Not just the local hospitals – though they are there in numbers. It’s the national caner centers that advertise in my area I find most amazing. Cancer centers in Atlanta, Pittsburgh, Baltimore, even Houston run television ads in the Washington DC area. Cancer must surely be a huge – and hugely profitable – business to make this worthwhile.
Ask my why I am for a single payer system.
Jim Carter and Phyllis Logan of Downton Abbey fame were chatting recently with a New Yorker writer and Carter noted “We have got a lovely future behind us.” I found that very comforting somehow.
This Chemo is not quite as much of a time waster as the old Monty Python computer game Monty Python’s Complete Waste of Time. But it’s too close for comfort. Ennui thy name is chemo.
I had a choice of two courses of Chemotherapy. In end stage patients one was 23% successful and one was 30% successful. So I asked my doctor – it seems one is better for my cancer than the other. And he said “We can’t say that because you are not end-stage and the two treatments have never had a head-to-head trial. “I asked “how do I chose.” He said “You just choose?”
How about that – a coin flip with your life at stake.
Of course neither odds are all that great but you have to start somewhere.
At our pre-Chemo briefing I met a young woman introduced as a researcher so I took the time to ask her what she was recearching. She said “all kinds of things.” One hopes that maturity will teach her to be a little more forthcoming in an audience of cancer sufferers – not all can wait for the answer. But she was sweet and also said that there is so little known about cancer that there are lots of topics.
This continues to stun me – how little the doctors know and how much they guess while the research millions pour in.
On the other hand there do seem to be quie a lot of cancer survivors around – many women breast cancer survivors, many others including some friends who kept their illness from me. Good for them that they survived. May we all eh?
My cancer is “all about me,” and if ever there was a time to be selfish this is it. So says my brother. But it doesn’t work that way, at least not for me. My cancer is also about my family, my friends and co-workers, certainly my doctors and care givers, my bowling team – everyone who has come to rely on me for something, tangible or emotional. The expectations of others surround us and navigating life is to an extent managing these expectations.
Since I always prided myself on being reliable, not being able to meet the expectations I so routinely met before is a source of guilt, frustration and, inevitably some resentment – why should I have to feel guilty about dying? But there it is.
I’ve encouraged my family to think, feel and say anything that is on their mind. Better for me that I know than that I guess.
For others, someone suggested applying the ring theory. Interesting idea even if not enforceable. http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
When I was a high school kid in Nebraska, we visited a research farm where they proudly showed us some cows fitted with a permanent point of access to their stomachs. You just unscrewed a cap on the side of the cow and you could look inside and dip out as much partially digested goo as you wished. The memory is still vivid after 50+ years. Didn’t seem to bother the cow nearly as much as it did me.
I’m getting fitted with a “portal” tomorrow which is substantially similar. It’s a semipermanent point of access to a vein under my clavicle. This makes drawing blood and administering medicines and chemo drugs oh so much easier, and it’s “minimally invasive,” a euphemism you have to love. “Minimally invasive” is still invasive and they even call it a “portal” to emphasize that it is a point of routine access to my circulatory system.
How long will it be in? As long as the docs want it in. It’s probably great in practice – for one thing they have trouble finding veins on my hands and arms. But I can’t stop thinking about those cows.
Welcome to modern medicine. I went to the doctor with stomach pains five weeks ago. Since then I have seen five doctors, talked with a sixth, had two CT scans, an MRI and a biopsy, seen and talked with five nurses/nurse practitioners, had blood drawn four times, attended a two-hour briefing and filled three prescriptions. And all this was just to agree on a diagnosis and course of treatment, which starts next week.
Two of the scans were done on Saturday – admirably convenient – but each one of these contacts took time, sometimes a lot of time.
I have new sympathy for folks who talk pretty much exclusively about their treatment schedules.
On the whole I’d rather be in Philadelphia.
I stumbled across a new word, or actually a very old word, dating from the first half of the 16th Century. It’s from the Greek for “bad condition,” and is defined as a wasting and weakness due to severe chronic disease. Like cancer. An estimated four cancer patients in five suffer cachexia.
Bad condition indeed.
Why is unexplained weight loss often the first sign of cancer? It took a bit of research – one site said you lose weight because you have lost your appetite, which of course does not amount to unexplained weight loss.
But the American Cancer Society came through with a plausible explanation:
“This may be because cancer cells use up much of the body’s energy supply, or they may release substances that change the way the body makes energy from food. Cancer can also cause the immune system to react in ways that produce these signs and symptoms.”
In fact the entire article is worthwhile; it makes a case for complaining to the doctor when you don’t feel right. This is something I didn’t do right away – I had occasional stomache aches for Pete’s sake. But it might have made a difference for me. They say a hypochondriac is the best patient.
Here’s the link: http://www.cancer.org/cancer/cancerbasics/signs-and-symptoms-of-cancer
By the way, one site I visited suggests countering weight loss by eating more. I love these guys.