Notes from the Cafe Fiasco

MLTD - 8/31 - Sick

I haven't been posting to the blog lately because, ironically, I've been sick. Last weekend, I was taken suddenly and violently sick by some sort of flu bug and I've just now gotten back on my feet. In between the bouts of sleeping (my body tends to just shut down in order to deal exclusively with any sort of infection -- it seems to say the hell with this consciousness stuff), I got to reevaluate the possible treatments for my cancer.

For the first time since diagnosis, I was genuinely physically weak. On Monday, I managed to make it from the bed to the couch (a distance of about 15 feet) and I was strong enough to cook for myself and that was about it. I didn't even think of going down the five flights of stairs to get the paper and the mail since I would then have to go up the same five flights to get back to the couch. This was not so much unacceptable as it was probably undoable in any sort of reasonable period of time.

And as with so many life issues (if you can call getting up and down stairs a "life issue") these days this brought up a question connected with cancer: What does this tell me about getting through the potential Western treatments for the cancer? The big three are: Surgery, Radioactive Seeds, and External Beam Radiation. Each has it's own problems, complications, and all are guaranteed to lay me out one way or another.

Up until this week, External Beam was in the lead -- I really don't like the idea of people, even people I like and trust, fooling around inside my body. If they're going to do something to me, I want to be able to see it. But the big problem with External Beam is that I have to do it five days a week for seven weeks. Besides having to schedule your life around your treatments for almost two months, there's the problem of how your body is going to react to the radiation trying to kill a small part of it. Everyone reacts differently. Some folks sail through radiation without slowing down all that much; some have much more "sickly" reactions.

So what if the reaction that I have is that it's difficult for me to even get in and out of my crow's nest apartment? Does this take External Beam out of the mix? This has suddenly become much more real to me.

How did I get to the place where I'm even trying to think about this stuff? Cancerland is a strange place. Used to be that I'd just get a virus and, after a few days, I'd get over it. Now there are all sorts of implications for stuff that used to be, well, just life. For a disease that steals your future, it sure does force me to spend a whole lot of time there trying to figure out what things mean and how things will work.

Jim McAnaney 1952-2007

I didn't know Jim well. That process what just beginning when he went into the hospital again for a bone marrow transplant this spring. But I did know him well enough to feel cheated when news came of his death this Friday after a long struggle that resulted from the transplant. It was a hard way to die and he didn't deserve it.

He was a big gentle guy who had been around the block more than once and had let this process soften rather than harden him. This spoke of an internal courage that you don't find every day. I was looking forward to knowing more about how he did that when he was abruptly taken from us.

He leaves many who loved him and at least one, and probably many more, who just wanted to know him better. God speed, Jim.

MLTD- 8/19 - Meat

I was complaining that my energy wasn't what is was to my acupuncturist a couple of weeks ago and she suggested that I might want to try a little meat in the diet. She says that not everyone was built to be a strict vegetarian and maybe I was one of these people.

Friday I was in Harvard Square and remembered that Lee's Sandwich Shop made a decent burger so I thought that I'd try an experiment and see how the body reacted to meat after not having had any for two and a half months. One Beefburger Special later (with fries, of course) I went on to the library at Harvard to do some reading. They have these big wing chairs in the periodical room and I settled in to read about my favorite part of the 19th century. Half an hour later I woke up.

Looks like my body can still process the protein okay, I just have to be unconscious to do it. I'm not sure if this is good news for the cattleman's association or not.

MLTD - 8/14 - Language

I have to admit that it took a couple of weeks before I could say the word "cancer" and actually hear myself say it. This may have something to do with the fact that my mother was a cancer sufferer (breast cancer in both breasts) and, though it technically did not kill her, it did lead to an irreversable slide down in her quality of life until she did die of something else two years after her diagnosis. This was over 40 years ago and during that era the equation was simple: cancer = death. So, I guess that's it's understandable that I would not want to invoke the name of something that killed someone so dear to me especially with the attendant historical link to mortality that the disease has implied all these years.

It took me a while, but managed to get over at least part of this block. Now, with the fact that everyone I know has cancer, had cancer, or knows someone who in remission from cancer, I've managed to come to terms enough with the mortality issue (this appears to be one of those on-going, pain-in-the-ass type issues) that I can spit the word out and mean what I say. I don't like it, but I can do it.

My problem is no longer with this particular noun. My problem is now mainly with verbs.

In talking or telling about the diagnostic news with people something hesitates in me when I go to say that I "have" cancer. This may the same problem that I have when people talk about "having" sex. It seems to me that neither cancer nor sex is about "having." Even in a mercantile culture, this is a misplaced commodification of a process or a relationship. I can't sell my cancer, hide it in a box in the basement, or get rid of it on one of those "clean the house" reality shows. The verb feels wrong. I don't have cancer; if anything, cancer has me.

Then there's the sentence: "I've contracted cancer." This isn't correct either. The word "contracted" is usually reserved for communicable diseases and unless you are one of those persons who believe that cancer is caused by a virus, the connotation of the word "contracted" is not accurate. Besides, I didn't set up a contract with anyone to get this disease no matter how many lawyers would like to be involved in such a process as this.

"Suffering from cancer"? Many people suffer from cancer everyday, but not me. There's no physical pain and my slightly overweight, aging body with the bad knees doesn't feel much different from the way that it felt before the diagnosis. If things go badly, I may suffer from this cancer, but I'm not there yet and to claim to be would be a cheapening of the experience of those who really are suffering. This doesn't work either.

So the verbs aren't really working for me. And there are other related phrases I don' t like either.

"Cancer Victim" is defeatist and usually inaccurate. Almost everyone that I have met who has wrestled with this disease has shown amazing courage and fortitude, some in the face of what is probably certain death. They are not "victims."

"Cancer Patient"? Who decided that we're patient? If anything, I've been less patient in the past two months than I've been in years. While I haven't been shoving little old ladies out of my way, the lesson that "life is short" has hit home lately and the new attitude is that if I really want to get somewhere and you are in my way, you'd better move. This especially applies to the American medical system. Patient? No, don't think so.

"Cancer Survivor"? Not yet. Though I have thought about creating a T-shirt that says: "Cancer Survivor (so far)", the term is probably closer to "Cancer Engager."

So, all in all, the language surrounding this disease is a mess and this only makes the mess that is cancer even worse.

So why is any of this important?

I've learned that a large part of getting the correct treatment for any disease, and especially this one, has to do with correct identification of what exactly is wrong and a part of that is having the correct and concise language to express what it is that's wrong. Linguistic concision is a treatment tool as strong as any MRI. If you don't have the correct word for what it is that's happening to you, it's very hard to make sense of the experience and formulate the correct response that will keep you alive.

Also words have magical properties that involve framing how you look at the world -- including how you relate to something as intimate as your body not functioning properly. How you relate to your cancer has a major effect on your survivability and this relationship is many times moderated by words. If you consider yourself a "cancer victim" then literally the chances are greater that you will not survive than if you picture yourself a "cancer warrior." One label is passive, the other active, and how you view your chances has a great deal to do with what those chances are.

And you have to be able to name your opponent before you can defeat it. I'm glad that I can now say the word: "cancer". Now I can move on to the word: "gone."

MLTD - 8/3 - The Grind

Well, the exciting part of all this is all over for a while.

I now know where I stand medically since that the diagnostic tests are done for the nonce. No more interesting dances with members of the medical establishment for a while. We now have a strategy with an official name ("watchful waiting") and I have a hazy idea of what I'm supposed to be doing for the next three months until we do the next round of tests at the end of October.

All I have to do is do it.

Rethinking and renovating your life without an immediate impending crisis has been every bit as difficult as I thought that it would be. I think that I've got the dietary supplements figured out, but I run into new information about adjusting them all the time (Who knew that pink grapefruit is a good source of lycopene? What to do with the conflicting information about flaxseed?). The new vegetarian diet is an adventure in American culture (not) as I try to figure out how to get what I need without relying on dead animals or joining a cult. I have to decide which energy exercises/meditations are likely to be the most effective on my particular type of cancer since if I did all the ones that I've found or had recommended to me I'd never get anything else done. And then there's the small question of how I position my life so that if I get really sick I can pay the rent and feed the cat.

It's in my face everyday now. I knew that there wasn't going to be a vacation this summer when I heard the diagnosis in early June, but I didn't know that all this was going to be so much damn work and that I would have this constant gnawing feeling that I'm losing time while I fumblingly attempt to get it together. I've learned the hard what the there's no black and whites with this disease, just the shades of gray - the gray of doing the best that you can with no clear feedback as to whether you did the right thing - except, of course, for the dying part. But you can do everything right and still die. No clear feedback there either, actually. And even if you manage to "beat the cancer" there's always the significant chance of recurrence.

I'm the sort of person that's built for crises. Growing up Yankee has given me the ability to be as cerebral and analytical in emotional situations as the best of them. But the crisis is over, at least for a while. Now I get to test myself against The Grind.