Thursday, March 10, 2011

The identity of illness.

As I was leaving work last night, I ran into somebody who took care of me after surgery and whom I'd not seen since. She squealed and we hugged, and she said what everybody--even my surgeon--says: "You look so *good*!"

Everybody says I look good. The people I've known longest, since before I grew my hair out for Beloved Sister's wedding, look at my buzzcut with satisfaction and say that I'm the Jo they knew "before".

I am the Jo they knew Before. I'm also the Jo that's here After: after diagnosis, after surgery, after PET and MRI scans and Dilaudid PCAs and the long-to-me-but-actually-short recovery.

I look good, if good is still the forty-pounds-overweight, silly, rubber-faced me that you've all grown used to. I feel good--better than I did before surgery, that's for sure. I take more care in what I eat and what my habits are and how hard I work out, and I have a lasting (I hope) gratitude for things like sunny days and unexpected afternoons off. All in all, things haven't changed that much.

(That is, by the way and parenthetically, the weird thing about a diagnosis like CANSUH. You expect that your life or your *self* will change in some way, but it really doesn't. Not in any way that you can put your finger on, anyhow. Which is kind of disappointing, and kind of reassuring. The human animal is immensely adaptable.)

But now, added to all of the stuff that Jo was before, is Jo the Cancer Survivor. That's an identity I'm not completely comfortable with for two reasons:

First, mine was a baby cancer. Compared to people who had to have radiation and chemo or who lose their hair for real or who fucking DIE, mine was the sort of cancer that slumps along and doesn't do much. I don't feel like I can really claim a Survivor Badge, because what I went through? Really wasn't all that bad.

And second, and this is the hard part, the five-year mark means nothing with PLGA. It's most likely to recur in years seven through twenty...which means that it's most likely to recur just when the plans I'm making are finally coming to fruition, or after I think it's gone for good. I try not to be pessimistic, but I wonder: am I celebrating too early? Should I be making plans for the day when the rest of my mouth is gone?

Cancer is gonna be a part of me from here on out. Even if everybody I work with changes jobs, even if I move, even if I shut the blog down and delete six years' worth of posts, I'll still have it in my head that I've had cancer. I'll have it in my head that it could come back.

I'm not sure how to integrate this illness into my identity.


inkgrrl said...

Right here, right now, you've kicked it's ass. It took a piece of you as payback, sure, but it's gone and you're not. Definitely celebrate babe. You've earned it.

joykenn said...

Ah, but Jo, the fact that your aware of that sword over your head of a possible recurrence and that you cut your hair and worried so much and didn't sleep well and feared and went through all the other emotions that having cancer cause MEANS you are a cancer survivor. It isn't how big or visible is your scar but you've joined the "elite" club of folks that can no longer pretend that they are going to live forever. That's why you particularly enjoy that sunny afternoon. Face it, you've changed and you DO deserve the Cancer Survivor badge.

Kirstin said...

Do you want to hear from someone who's been fighting melanoma for three years, has brain mets, has had chemo, is getting radiation... and looks fucking invincible?

Because I get it.

Celebrate now. This is what you know you have. It's never too early.

Celeste said...

You had valuable bodily real estate amputated. How could you NOT be a cancer survivor? It's not a baby cancer when it costs you part of your body. It was the real deal, not some little sunspot on your nose.

As far as integration goes, maybe there is some other painful or unpleasant thing you came through that you can look to for inspiration.

TheSchaft said...

I think you have integrated this illness into your identity already.

Your priorities are modified, your self-view is changed, your mortality is more apparent to you.

RehabRN said...


I'm with Kirstin.

Have fun doing whatever the hell you want to do. Make those plans and keep going.

And if Mr. C. comes back again, beat the crap outta him. Again. And again, if you have to do it to get what you want.

I truly believe life is too short. I have lost too many friends in the last year not to appreciate the moments I have had.

I'm gonna take every one I can get.

Anonymous said...

Listen to Kristen. You didn't know it was there before; you don't know if you're going to get in a car accident tomorrow. Not much point in organizing your life & your thoughts around something that might happen more than a decade out.

I've sent a couple of other messages - I'm the too-lazy-to-create-an-id brain cancer "survivor" & I've asked myself the same questions often. Although my cancer is very scary sounding (sure scared me!), in reality I've had surgery with little pain & easy recovery, and a whole lot of MRIs. Kinda feels like cheating to call myself a survivor. People can have a much worse time falling off their bikes.

And I think, well, it'll probably come back some day. Maybe I should worry a little now so I don't get blindsided by a great big worry then. But 1) that might not even work, and 2) I've thought it over & would just as soon risk the shock and enjoy things here and now.

I think that's the really big thing we can learn from that close encounter with the scary disease. Don't leave stuff on your to-do list that you'd really kick yourself for not doing. Go for it. And since it's obvious that you love lots about your life, keep on living it.

Anonymous said...

Ditto to all the above from me too. I thought having cancer was't something that changed who I was but then I noticed I didn't worry anymore like I used to. And I had generalized anxiety disorder, lie-awake-at-night anxiety, since forever. Now, I am like, whatever. I want to enjoy the now rather than fill my time with fears for the future and regrets about the past - I used up all my worry getting through treatment I guess. And I feel a deeper sense of myself and connection to spirit although not in a formal, churchy, way. So cultivate mindfulness Jo, it keeps you centered.

Penny Mitchell said...

This is not the same situation, but it bears mentioning here: Friend Kim's paternal grandfather was convinced every day of his life that he was dying. I am in no way exaggerating. Every. Single. Day. he was convinced that the twinge in his arm was a heart attack or the ache at the base of his head was cancer. He started doing this when he was in his 20s, according to family legend. He kept it up to the point where very few people wanted to hang out with him. ALL he could talk about was his health, and how he knew FOR REAL THIS TIME that he was going to die soon.

He lived to be 103.

I've never had cancer, but I could die tomorrow from a blown aneurysm/stroke/bad driving decision. So could you. Or you could live to be 103 like Grandpa Mann. You basically can't control how you die. How you spend your last 24 hours (whether you're in the middle of them right now, or they're going to happen at some point in 2074)...that you CAN control.

Easy for me to say, I know, but: Don't let the fear win.

Rosanna said...

Jo, I haven't ever had a diagnosis of cancer, (although, through the years, I've had "suspicious" biopsy tissue sent from my cervix, uterus, and breast to the Pathology Lab).

Something else that might bear mentioning here, too, is that IF you can gradually/successfully integrate your illness, (i.e., your cancer), into your identity NOW, it might, in a way, help you to integrate something else----(in the far distant future)----into your identity THEN.

And that "something else" is............ your retirement from active, Direct Patient Care Nursing.

Right now, your genuine; honest-to-God; no kidding; almost complete-and-total; astonishingly/admirably competent; and extraordinarily intelligent/compassionate personal identity is that of............ "NURSE JO." When you eventually have to give all of that up, at some point in the far distant future----(as we all, as nurses, will eventually have to do, or have done)----WHO will you be, then, if you won't EVER be "Nurse Jo"............ again?? Not *EVER* again, either on a weekday shift; a weekend shift; or on a holiday shift, doing Direct Patient Care; (or proctoring other nurses/students)??

IF you can gradually/successfully integrate your illness, (i.e., your cancer), INTO your identity NOW----(and I definitely think you will)----in the far distant future, integrating "Not Being Staff Nurse Jo Anymore" INTO your identity THEN............ maybe won't be as hard.

Two honkin'-big "Life Tasks," you know, Jo, i.e., integrating "Cancer" INTO your core identity now - integrating, (in the far distant future), "Retirement" INTO your core identity, even though............ (and I kind of think that most of the readers of your HN Blog would maybe agree here)............ that even when you're "Retired Nurse Jo"; and you never-ever take care of an "official" hospital/clinic patient again; (or proctor other nurses/students), that you will ALWAYS BE "Nurse Jo"............ *inside*............ and to your friends/family/others.

Suzy said...

I'm a two year cancer survivor. And I use the term survivor even though I had no chemo or radiation. I lost a kidney, have a huge scar (16 inches long) and was told I would never get off the operating table. Showed them! And I will continue to show them, even though cancer is forever a part of me, I am surviving.

You are too. Of course it changed you, but, you will find a way to integrate it into who you are.

My cancer has a 50% 20 year survivor rate. Scary as hell as I am only in my 30s, but, you have to let it go and live and plan like you aren't going to have a recurrence. If you don't you'll just go crazy.

I say this as someone with anxiety and depression issues. I've had to let a lot of it go so I don't lose it completely.