11/13/09

Is it Live, or is it Memorex?

There are lots of things that come with the privilege of having a terminal illness.

I am trying to think of some good ones, but the only thing I can think of is that you get to park in the handicapped spaces, which saves you money on the meter and is handy in icy parking lots between Black Friday and the end of 'Xmas Present Exchange Week'.

The rest of the effects are less desirable. For me - at least for now - the biggest issue is that decisions of all sorts become vastly more complicated by the fact that you don't know if you are going to be functional in X period of time. You don't even know if you will be around in X period of time. What you invest in, what you speed up the timeline for, what you ignore, what you get done Right Now... even what you dream about can change from day to day, depending on the configuration of your doctor's eyebrows during your last visit, the most recent mysterious twinge, the certain look in your child's eye as he gazes at you instead of the television screen. So right at the time when every decision you make becomes more urgent and potentially life-changing, making decisions becomes a much more complicated, uncertain, and tangled process.

One of the big decisions you have to make involve treatment options. And in my type of situation, you don't get to make the decision just once and then take a deep breath and move on. One of the only fairly sure things your doctor can tell you is that whatever treatment you decide on, it is not going to work forever. Sooner or later, nobody can say exactly when, it will stop working (if it ever works at all), and you will have to make more decisions. And each decision is likely to be on a shorter timeline than the last.

Cancer is clever, it learns and adapts on an accelerated basis as it goes along (unlike my brain, which forgets and gets distracted on an accelerated basis as I go along).

One of the side-effects of this is that doctors qualify nearly everything that they say to you as you try to get information on which to make a decision. They aren't trying to sidestep responsibility so much as they are just trying to be truthful; cancer is still mostly a big foggy unknown in which Stuff Happens.

So when you get a lumpectomy or mastectomy in hopes of getting rid of the primary cancer site, your doctor will warn you that although the tissue in which the tumor was nestled is gone, this is no guarantee that it will not settle back in at a later date. You can get rid of your breasts, but you can't get rid of your chest.

And that, Dear Reader, is where this past few weeks come in. Because I have a little lump in my chest, just an inch or less from where the original tumor was. My doctors inform me, with just that note of hopeful dubiousness that frequently leavens their statements about my future, that cancerous lumps usually aren't as easy to push around as this lump is. I guess the hope is that this might be scar tissue forming around the partly-dissolved Lemon Drop a nurse absentmindedly spit into my open chest during the surgery. I am to 'watch' the lump for signs of growth, and report back for surgery if it gets bigger. Theoretically it can be taken out 'fairly easily' - one gets the impression that it could, for instance, be popped out during a casual lunch date.

I can only hope that a passing teenager doesn't accidentally drop a scar-tissue-inducing french fry into me while my surgeon is ordering her half-caf latte.

In the meantime, this whole 'watching' thing is driving me nuts. Well, okay, more nuts than is occasionally the case. I show every sign of repeating the anxiously obsessive behavior that I displayed towards the original tumor:

Check to see if the lump is bigger, can't really tell; watch a bit of tv, check again in case the lump has grown in the last five minutes, it could be a little bigger than it was at the doctor's office, is it bigger? can't really tell; read a chapter of my latest library book (mostly funny book, but inevitably we have gotten to the Pathos Chapter where someone dies), cry a little, check the lump again, move it around a bit to prove that it still is in the 'not as likely to be cancer even though it could be' category; finish listening to a podcast while knitting a self-designed and dubious-looking hat for the husband, check the lump again, for some reason it seems tender (maybe from being prodded and pressed every five minutes, I really need to leave it alone); check my email, head to the bathroom and brush the teeth while struggling against the urge to check the lump again, snuggle up to the snoring husband, adjust my pillow, lay rigid for five minutes, check the lump again, it really could be bigger, I think it is... or maybe I just think it's bigger because I'm fretting about it, or maybe it's bigger because it's inflamed by all the messing about it's getting; grit teeth and make determined silent oath to leave the lump alone; lay in the dark, staring at the ceiling for at least two hours, thinking about the lump and the advisability of having a third surgery in one year; spend another hour thinking about how if I go to sleep now the husband's alarm is going to go off just as I really settle into slumber; lose control of hand, check the lump, startle guiltily as the alarm sounds; try to take advantage of subsequent lack of snoring companion by snuggling into his slumber-warmed cave of blankets; give up the effort when son's alarm goes off; lever self off bed, stumble out to the living room, check email, fuss at scruffy offspring as he runs out the door without his lunch or coat; remember to take bone-strengthening supplement only when I'm hungry, resent having to grudgingly wait another hour before eating. Check the lump.

Yesterday I had better control over myself, perhaps because I was able to talk about the lump to several people, mostly folks whose job it is to listen to me fret for fifty minutes. So I only checked the lump three times, and one of those didn't count because I only checked to see if the skin over the lump indicated something was there. It did. But I didn't check that before seeing my doctors, so I don't know if that's a sign of growth or not.

Obviously this behavior is not good for me, and it might be better just to get the damned thing out so that I could just deal with it, whatever the resulting biopsy might show. But again, another surgery so soon after the others, with the inevitable hit to the immune system and the eye function. If it's just scar tissue, I'd be weakening an already stressed system right when I need my immunity function to be as strong as possible (already asking a lot, since it was never very functional in the first place).

Decisions, decisions...

3 comments:

Roberta said...

I totally get where you are. Wait and see...watch and wait. My tumors have names at this point. And constantly asking my docs when I can have the next scan to see if they have changed and having them say "you have to wait more than 4 days, deary" doesn't do anything to calm the obsession. I know it isn't nice, but I spitefully enjoy listening to other people who have drama going on, so I have something else to focus on for 5 minutes besides the tumors (Henry, Isabel, Sebastian, and the group in the Pancreas is the same symbol Prince uses...I just can't find it on the keyboard)

krex said...

How frustrating for you...Half my scars are simply because I could not "not" pick at that nonsmooth area .
Grrr.....reminds me of Mcbeth...."weither tis nobler" speech...I really hate to make decisions that involve unknowables .
Why is it taking science so long to catch up to Star Trek health scanners . I suppose an MRI is out of the question ?

(You were kidding about the cough drop, right....? I mean they do wear masks during surgery ? )

The Violet Hoarder said...

Yes, please tell us you were kidding about the cough drop!
I, too, am well acquainted with the kind of obsessive thinking you're talking about.It takes you over and you lose your grounding---at a time when grounding isn't that deeply rooted anyway. If you can, get out in nature--it brings things into better, bigger perspective. And--if you can manage it without exploding with anxiety--meditate and get very quiet. It let's you breathe, and take a step back from the fear. I wish I could reprint what you've written here for every woman who's ever had a serious health issue. You've summed up the experience so well and beautifully--as usual.