Thursday, January 13, 2011

What it's like to have had cancer.

You expect things to be different after you get the diagnosis. You expect things to be easier somehow, or more clear-cut, or somehow more differentiated. It doesn't happen that way.

Instead, what you find is that you have the same decisions to make as you did before diagnosis, but now they're complicated by how much energy you think you'll have at a given time and how much nausea you think you can get through at a certain point in your treatment.

I'm thinking about next week: I'll have my second post-op, first-post-healing checkup with my surgeon, and a mammogram (baseline) and a molding for the intermediate fucking prosthetic all in the same week. It's not a question of what I can manage physically any more; that excuse went away about six weeks after surgery. Now it's a question of what I can handle mentally, and there's really no excuse there.

Low-grade. Low-grade. Very little chance of recurrance, excellent prognosis. Yet the reaction is never low-grade; it's always the same, whether it's a high-grade lesion or not. Either way, you behave as though the hyenas are circling. The only difference is how long you have to behave that way.

Next week, next week, next week. On Tuesday I see the surgeon and get my breasts x-rayed for the first time, as a baseline for the future. Given that I had a PET scan less than four months ago, I'm not worried that they'll find anything nasty in my mammogram. (I looked like a bug on a string in the PET scan's outline: arms and legs splayed out as they instructed me to hold them, and a big round-bellied body outlined with radioactive glucose solution.) It's just a reminder that cancer might still get me, and in a different part of my body than it tried before.

If they do an MRI, they won't see any regrowth of tumor at this checkup; it's that low-grade. Same with a CT scan. PETs only catch things that are larger than a half-centimeter in diameter. The last PET barely caught my tumor. So, realistically speaking, we can't do much until any tumor that might regrow has gotten large enough to merit notice outside of any special screenings.

Which, given the habits of this type of cancer, might take ten or twenty years. Low-grade, low-grade, low-grade. Excellent prognosis, especially with wide excision.

I had a dream the other night in which I was speaking clearly. I was just dozing, so I woke up with a start as the dream barely began to take hold.

Wide excision.

There is a plastic surgeon at work who's done pioneering work with muscle flap transplants in people who've lost their soft palates to surgery or accident. I wonder if it would be worth it to talk to him. As it is, I have to decide what's worth saying before I take the prosthetic out to go to bed. Sometimes this could be a good thing.

Years and years ago, I had a lover who was deaf. This was before the days of cochlear implants or small hearing aids. It bothered him immensely that he couldn't hear anything after he'd unhooked his aids and put them on the bedside table, whereas I thought it was unusual and romantic to have to trace letters on his hands. Now I understand how he felt, a little.

Low-grade, low-grade. Small chance of recurrance with wide excision; good prognosis.

What if the wide excision I had wasn't enough? What if I have to sacrifice more than I already have?


Penny Mitchell said...

I won't insult you by asking you to look on the bright side. I think it's okay to be human and have doubts. I don't have any answers for you, but I love you to the ends of the earth and beyond. I don't know if that helps any.

Lurkette said...

Nothing to say, sugar, except... I know. I know.


Laura said...

If not enough was excised, if you're asked to give more than you already have, and more than you think you even'll deal with it then. You pick yourself up off the floor, just like you did the first time around, and kick the cancer's arse a second time.

For the meantime? Enjoy the dog and the juvenile delinquent cats. Keep regaling us with tales of socially inept doctors and Highly Inappropriate chaplains. Play Fairy Godmother to the child of the Man of God and his Lovely Wife (has she popped yet?). Generally, keep on being the awesome Auntie Jo we all know and love.

Lynda Halliger Otvos (Lynda M O) said...

What if you have to sacrifice more than you already have? The adage that you never get more than you can handle rolls lightly off the tongue of many people in this situation; I don’t believe that we can handle it all, all the time. I do get taking it one day at a time, though.

With a smile, hope and a hell of a good insurance policy, good readers and good medical teams, keeping the rest of you as healthy as you can while the cancer gets wiped out. Wish I could hug you-I’ve been told I give good hug.

Are we still donating to helping others? I have a couple bucks I’d like to throw into the pot...

Anonymous said...

What is you have to call 911 in the middle of the night? Can you speak well enough without the appliance to be understood. This was a worry my mother had and she would keep hers in at night.


shrimplate said...

It's my hope that you can be comforted knowing that people you haven't even met are wishing you all the best.

bobbie said...

Holding a space for you of comfort and ease ~
It is OK to worry ~~~

danielle said...

what if...what if....what if we erased the phrase "what if" from all languages in the world? wonder what we would come up with to replace it? this can be the saddest phrase in the world - or the most exciting think of all the new discoveries that began with that phrase). Sorry, you jsut got me thinking about words....

Anonymous said...

Yeah, after my surgery, I asked a friend who had been through much worse surgery a year earlier if she still thought about it every day.

Yes, she said, but not the same way.

It's like a lot of parts of your life; now you're a driver, and you're aware of it on some level, but it doesn't feel the way it did when you were 18 & still thinking about that new license day & night; now you've had cancer, but it's history now. Yesterday's history is fresh in our minds; the Viet Nam war? Well, yeah, it was important, and we'll never forget it (those of us who are old enough, anyway - choose your age group's special history) but it is no longer at the front of our minds.

Trust me. Your cancer will do the same. You just have to give it the time.

Recurrence? Always possible, but then it is always possible that a car will knock me over, or an asteroid will fly into the atmosphere and destroy my house, but those things don't keep me awake.

Live today with today's joys and problems; don't spend any more time than you can help trying to second guess what they'll be twenty years down the road.

Easy to say, I know, but having been through the process, I also know you'll be able to let go of a bit more every day.

RehabNurse said...

Yes, it's a pain in the arse to think about all this stuff.

So far the score is Jo 1, Cancer 0.

You're just looking to keep it that way.

And if it dares darken your door again, you'll beat it up with the broom again, until it's gone.

So far, it's not around. Just keep the broom handy.

I'd put my money on you, jo.

terri c said...

What Shrimplate said. Also, if you weren't having these kinds of feelings at this point I would be afraid you had lost your mind. And you have not lost your mind. Many of us are virtually with you; if it helps, imagine the waiting rooms next week filled with all of us, there to just be with you.

messymimi said...

The healthy have a cocoon. Once you get diagnosed with something, anything, you never get back in that cocoon again.

I know. I start the rounds of docs again this week. We'll see what plays out.

Either way, i've been out of the cocoon since i lost that 3rd pregnancy, so i understand, as much as any of us understand each other.

You are in my prayers.