Lost and Found

“Your biopsy is positive.”

Those were the words I heard when I found out I had cancer.   I’ll never forget those words.   I’ll never forget the day, the hour, where I was, what I was doing when I heard them.   I’ll never forget the strange, weirdly comic experience of having the stereotactic biopsy that led to them.   Or the nurse who prepped me for the biopsy.   Or the radiologist, elevating the table on which I lay prone, with one breast protruding through an opening, while she stood underneath, numbing the spot where she would extract my tissue.   Or that small pink cold pack the nurse gave me afterward, covered in a stick-on flowered bandage, that I placed over the site to ease the soreness.   I’ll never forget the radiation tech who told me she’d had one of these herself, a few months prior to mine, negative this time, but the one she’d had two years before wasn’t.   Even then, I wasn’t worried.   I was a little anxious, sure.   But me?   Have breast cancer?   Naw.   I was just the recipient of conscientious health care.

This Sunday, July 24th, it will be three years since I heard those words, and it still makes me swoon with disbelief to remember that moment.   It hurts just to look at that photo above, when I was punctured but still whole.   Just weeks before I took that photo, I could still regard my breasts as just another body part, still dismiss them wryly and think, “Hey! Middle-aged yet perky!”   Now when I look at that photo, it represents a kind of lost innocence that is so much larger than the flesh itself.   In her recent blog post, Klunkerland, Lauren Rockwell, a psychologist and sister traveler of this terrain, observed wisely, “the greater part of grief starts just as we get back to life and figure out how this huge life changing event fits into our jigsaw puzzle.”   And that process of getting back to life seems never-ending when, after years have gone by, some seemingly unrelated event can trip us up and toss us right back under the bus.   And our cancerversaries are not random events.   So, I should hardly be surprised that, even though I wasn’t conscious of it, as this July approached, that odd, familiar undercurrent of terror and grief and numbness began to creep up.   And I wondered vaguely, “What’s wrong with me?   Maybe I need a day off.   Maybe I need more vitamins.”   And then, light dawned.   Oh, yeah.   That again.

There have been a few other personal events that have imprinted themselves in similar fashion.   The deaths of my parents were two such.   My father died in late November, 1985, of his one and only heart attack, two days after Thanksgiving.   He’d just turned 65 when he died.   I was 31.   For years afterward, around about Halloween, I’d get that Feeling again.   And go through the same process, start wondering what the heck was wrong with me.   Ask myself why was I feeling so out of sorts.   And then have the same realization.   Oh, yeah.   That again.   I don’t recall now how many years it took for me to get to that time of year and not feel that way, or at least not only feel that way, but be able to remember my Dad with some fondness and joy and gratitude for who and what he was.   The same thing happened for years as August approached, when I’d get the creepy weepies as the date of my mother’s death grew near.   She died in late August of 1994, just shy of her 73rd birthday, the year I turned 40.   Just thinking of how wretchedly and suddenly she died, and how I found out, makes my stomach turn over.   To this day.   Grief and loss can do that, inhabit your cells, forever.   But with luck and time, the sharp edges of how death has robbed you get filed down and tempered by the rich memories of shared life.

The gift is in our choices.

This is different though.   There will never be a time when I remember that moment or those words with an overlay of fondness, joy or gratitude.   Never.   Once again, I’ve heard a few people say “cancer is a gift” lately.   A good friend, who is recovering from a recent mastectomy, said them recently.   “It’s a gift that I got breast cancer,” she told me.   “I appreciate what I have so much more now.   I love just watching the chickadees at the bird feeder.   They’re like my new best friends.   I love my family even more.   And my friends.   I love little things.”

“That’s not cancer,” I said, “that’s you.   That’s who you are, not what cancer is.   You wouldn’t give someone cancer, would you?”

“Well, no, of course not!   But you know what I mean.”

I do know what she means, and what she doesn’t mean.   But cancer itself is no gift.   It does not magically make our lives better, happier, simpler.   It does not make anyone a better person.   I know a lot of brass-plated asshats who’ve had cancer, and it hasn’t turned them into nicer people.   Some of them are bigger asshats than ever, in fact.   Some of the worst are the Pollyannas who insist that life after breast cancer is just one big sexy pink party, and we should all celebrate our membership in the Club with pastel thoughts and rosy enthusiasm.   I avoid those people.   I prefer validation and candor to denial and delusion.   As for the rest of us moody, imperfect gits, we do the best we can.   We may have to give up on ‘normal,’ but we don’t give up on life or joy or love or friendship or meaning.   We do our best not to let cancer take everything we have.   And what we do have, we hold fast and appreciate more.   That’s how we choose to respond to having cancer.   But we didn’t choose to have cancer.

People can be careless and glib with the phrases they use to describe this experience.   I didn’t feel heroic when I was diagnosed or went through treatment.   I didn’t feel brave, or stalwart, or noble.   I felt terrified and overwhelmed.   I was stunned.   I wanted to run away and hide and never come out.   But I didn’t.   Because mostly I wanted to stay alive.   So, I did what I had to do.   That’s what we all do.   We may choose how or where to do it, how to talk or not talk about it.   We may find ourselves moved to tears by unexpected kindness, or trembling with rage at unexpected thoughtlessness.   We may marvel with delight at all the ordinary things we’ve taken for granted, or feel betrayed by our bodies, which we can never take for granted again.   And somehow we endure.   But we could all have done without cancer.

Not a holiday.

July also means that, starting tomorrow and during the coming weeks, I have to endure all my cancer check-ups.   I have to have my diagnostic mammogram, my lab tests, my office visits.   I have to see my breast surgeon, a woman who was gloriously kind and wonderful during my first visit, but whose care and attitude and behavior has worsened with every visit since.   Since our first few visits, she makes me feel like she can’t wait to shoo me out of her office.   I don’t look forward to seeing her.   But I do.   Because she insists.   And I don’t want to break in a new doctor.   And she has a fantastic medical assistant who is an angel.   I usually partake of some retail therapy afterwards.

I don’t bother seeing my radiation oncologist anymore.   He was useless.   According to him, my nearly three years’ worth of cancer related fatigue, pulmonary scarring, asthma, cording, tissue fibrosis, shoulder and chest pain, and chronic muscle tightness have nothing whatsoever to do with radiation.   My experience, as well as documented research findings, say otherwise.   But he doesn’t want to hear it.   I gave up on him early on.   Good riddance.

My med onc is a lovely woman, smart, rational, respectful, but I don’t need her anymore.   That’s a good thing overall, but should I need her again, I’ll hate having to, but I’ll be glad she’s the one I can call.   My primary care doctor is the one I’m starting with this year, tomorrow.   He’s my friend, my teammate, the best of the lot.   But I hate having to see him, too, because I remember when my annual physicals were a breeze, when I felt hale and hearty.   And I don’t feel that way anymore.   I wish I could see him tomorrow and tell him I feel fantastic.   I wish we could go back to the old days, when we would laugh, commiserate about the healthcare system, kid each other about entering middle-age, not have to fret about anything worse than a few extra pounds.   We don’t do that anymore.   Now, we have a long list of things to discuss, and I have to donate a lot of little vials of blood for lab tests.   And I hate that.   And I hate having to wait for any test results now.   I dread them.   I remember when I didn’t. I remember when I never gave them a thought, never feared that any results, even the less than perfect ones, would result in anything worse than maybe having to take a pill or lose a few pounds or get more exercise.   Not any more. I know better now.   I know now that test results might turn my life upside down.   Again.

Lost and found.

The good news is that I haven’t felt any lumps lately.   But then, I didn’t feel a lump three years ago either.   The good news is that I don’t have to take drugs to stay awake long enough to get through the day.   The good news is that I still have a job, and I can do it most days without dragging myself through each hour, each patient visit, until I can get home and collapse into bed.   I still come home and collapse into bed.   But I wake up now, after a nap, and can function a little before I go back to bed for the night.   Sometimes, on my days off, I can even exercise or mow the lawn or run up and downstairs to do my laundry, without having to spend the rest of the day in bed, overwhelmed with fatigue.   Progress.   I couldn’t say that a year ago.   Or two years ago.   It’s not exactly normal, but I’ll take it.

I made some new art this year, and won an art award, and had a gallery show last month.   And sometimes, my arm and shoulder don’t hurt so much that I can’t draw or use the computer.   My shoulder hurts every day still, but sometimes it’s not bad, not numb, not so painful that it keeps me from sleeping.   And I haven’t had any cording for a while.   And that’s good.   Cording is icky.

And, as amazing as it seems at times, I’ve never lost my sense of humor.   Occasionally, I misplace it, but I always find it again eventually.   I have lost a few friends, those who stopped communicating when they heard about my diagnosis, or who stopped communicating when, after months or a year or two years, I wasn’t ‘all better.’   My cancer experience has been very tedious for some of the people around me.   Hey, I understand that tedium, I really do.   I live with it every day.   I have no choice.   I’ve also lost a few friends to metastatic cancer.   They had no choice either.

The good news is that for every friend who couldn’t cope with my having cancer, I have ten new ones who are funny, smart, compassionate, articulate, who just ‘get it.’   Who know because they belong to the Club themselves.   And some of my old friends have become better friends.   And I love them for that.   The good news is that, even before I had cancer, I knew about pain and loss and anguish, and I knew that those feelings could hurt me but not destroy me.   Before I had cancer, I’d learned how to bear witness to other people’s pain and loss and anguish as well, to listen with compassion, not to feel compelled to fix everything.   I knew how to be present for someone else, to let them know I was not afraid of anything they felt or said.   And in doing so, I learned how stillness can impart a sense of safety in chaos.   Now, after cancer, I’ve learned to be an even better witness for my patients, for my friends.   Perhaps the hardest thing I’ve had to learn is to bear witness for myself, to listen to myself with compassion and patience and acceptance.   I don’t always like what I hear from that quarter, and I can’t always fix what’s wrong.   But that’s okay, even when it’s not.   I’m still learning that lesson.

The best thing, maybe the only thing that really matters after these three years, is that I can say that I’m still here — asymmetrical, imperfect, not my old self.   But I am present, and in that presence, I can still strive to be estimable.   And that is perhaps all that any of us need do.

“Beneath the Veil,” digital art, Kathi Kolb, 2011.

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This entry was written by Kathi, posted on Monday, July 18, 2011 at 10:07 pm, filed under Art & Music, Attitude, Diagnosis, Recurrence, Screening, Health & Healthcare, Nitty Gritty, Radiation, Surgery & Reconstruction, Survivorship and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

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