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.

Please click on the post title or the comment link below to post a response.

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.

18 Responses to “Lost and Found”

  1. What a beautiful post! You so captured it girl, all of it the sexy pink fest assumptions, the way people get it or don’t, and of course the way it taps you on the shoulder, even three years later.

    Thank you for the mention in your wonderful reflection. The PTSD aspect is so overlooked, and so must be honored. There is another one I wrote call the arrogance of lauren, that goes further into the sense we have when the sirens of treatment stop and we start to deal with all…

    I am so glad to have found your blog through you, and am honored.


  2. Well written Kathi! I am “you look like you need a beer girl” or “beergirl from bc.org. – February 11, 2008.

  3. Thank you, Lauren, and I’ll have to look for that ‘arrogant’ post!! I thank goodness for very excellent psychotherapy in my twenties, and my own willingness to reflect & perceive. And just for getting kicked around a few (several…) times before cancer. I was stunned to find out I had cancer, but I wasn’t heart-broken. Big difference.

    Barbra!! LOL! Funny you should mention your bco moniker…I was just thinking that I needed some alcohol! xxoo

  4. Kath,
    Great post here. You covered a lot of ground. So many of us relate to all of it, especially remembering all too well the exact moment we heard those dreaded words.

    I also thought your words, “grief and loss inhabit your cells forever,” to be quite profound and so true.

    Good luck with all the upcoming appointments and dates that trigger memories of the unwanted kind.

    Finally, I really like your ending. We are still here aren’t we? Not the same, but here.

  5. This is a beautiful piece of writing. You are eloquent and gorgeous. Thank you.

  6. It’s incredible how detailed the memory of diagnosis can be.

    I also love your insight into the ‘cancer as gift’ idea. Cancer is not a gift that any sane person would ever give to someone else. I had never thought of it in exactly those terms, but it makes perfect sense. How people transcend challenging, painful, traumatic, and life-threatening situations is based on their resources, personalities, insights, mental state, pain thresholds, etc. Would a holocaust survivor be grateful for the opportunity to move beyond a death camp experience? It’s stark to think about it that way.

    Happy Cancer Anniversary…

  7. Kathi, it does change you forever. I pared down my “team” as well: got rid of the rad onc who told me that radiation never causes lymphedema, got rid of the breast surgeon who asked me how to manage post-op complications and then told me she wasn’t responsible for them, still see my med onc–who is not the sharpest tool in the shed–but have someone at Dana Farber if I need him, and still with my primary and gyn.

    I do find the prevailing attitude amongst the doctors I no longer deal with to have been:” You ungrateful person, I saved your life, now stop whining about the collateral damage.”

    Life is never the same, yet we’re here and sharing and your post is beautiful, as always

  8. I usually go speechless for a while when I finish reading your posts. They carry very strong message and hits you hard. Your art is awesome too. I find you a very brave and inspirational person and it has been a great honor knowing you. Kick the cancer butt hard and celebrate those cancerversaries for years to come. Hugs and love

  9. WOW! This posting blew me away. Cancer isn’t a gift, but your blog sure is.

    The Cancerversaries are always tough.

    Thank you for addressing the fear of waiting for medical results. That validates things a lot. It’s such a mental battle for me dealing with doctors — even great ones. I’ve had panic attacks when there have been “routine” blood draws. I see a doctor at the end of this week, and I’m praying I don’t freak. And she’s a great doctor with a great disposition.

    As you can see, your posting resonated with me.

    Like you, I have constant pain, but mine is on the left side of my torso under my belly button, where some abdominal wall and all kinds of other neat stuff were tunneled up to create one of my new breasts. I am glad to have had the surgery, but my family and friends often forget because I look whole.

    But I don’t feel whole. Every pain is a reminder of cancer. And every pain scares me and darkens my mood.

    And you are right: cancer doesn’t necessarily change a person’s personality. For me, it has deepened my perspective, but I would never have wanted cancer. It’s not a gift but an albatross.

  10. Wow. You hit a home run with this post. So much of it resonates with me. I can remember so well hearing “the words”.

    I was out of town.

    One of my PCP’s nurses just blurted it out over the phone to me because she was unwilling to put me through to my PCP. I told my PCP that I didn’t want to ever have to talk to her again. Turned out not to be a problem, as she got fired.

    To add to that day, it was the day before my Mother’s funeral. I was in shock.

    This was no gift, and I’m still here too after 2 years and one month!

  11. Oh Kathi,

    “Oh yeah. That again.”

    Yes, THAT. Even reading those words – as far away as my diagnosis is now – that awful visceral sense appears.

    Wishing you well, my friend, and personally? I’d love to throttle your radiologist. Doesn’t know where the cording came from? Wow. Gee, musta been the lidocaine!


  12. Thanks, everyone. I got through the annual physical today with my primary care doc, and for the first time in three years, I could tell him I actually felt better than I did last year, not ‘fantastic,’ but better.

    Oh, Betty… I found out on the phone, too. I got a call a few days after the biopsy from the scheduler at the imaging department, telling me the breast doc had scheduled me for a breast MRI the same day I was to see her for follow-up. Well, I put two and two together, called the doc on her cell phone, and, apologizing for having to confirm the news on the phone, she said, “Your biopsy is positive.” Lovely. But oh, how awful for you to get that news from that idiotic nurse when your mother had just died! Massive hugs to you!! I think I would have had a complete meltdown dealing with both things at once. I’m glad you’re still here, too. xxoo

    Judy, we really have to do lunch — soon! It’s amazing how unhelpful our respective cancer docs have been, isn’t it? Honestly, if you want to turn someone into an activist & trouble-maker, just treat them like crap when you’re supposed to be treating them for cancer. I will also never forget that numb-nuts rad onc sending me home without a prescription for an antibiotic after my 10th radiation treatment when I had a raging upper respiratory infection. “We can’t treat that. You have to go to your regular doctor.” Yeah, sure. I was within walking distance of 1600 doctors, at a so-called “Comprehensive Cancer Center,” but none of those docs could evidently write a script for Cipro or Zithromax. Felt like asking for his prescription pad so I could write it myself.

    Jody, for the above and for many other reasons, I’d like to throttle that rad onc, too, and wrap the CT-scan showing that shows the pleural scarring around his neck while I’m at it. As my GF from Mississippi says, ‘he was as useless as tits on a bull.’

    But, yes, we are all still here, and I’m glad to know you all. You’ve helped keep me sane.

  13. What a richly layered post this is Kathi – there is so much to reflect on here but my main take away is your final sentence which resonates so deeply with me !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.” Words to live by!

  14. […] Kathi’s post was the one that moved me to tears this week as it resonated at a very deep level with my own […]

  15. You touched so many things here Kathi that I can so relate to…. I was so moved by your description of another year post diagnosis. Living with it, all the time, and the tedium that brings. Tests, checks, doctors…. sigh. I love so much what Marie picked up on – I’m still here… yes you are and am delighted to have you as one of my ‘new’ friends who ‘get it’. Mwah.

  16. Kathi, what a beautiful expression of the thoughts so many of us harbor! From relationships with doctors that went south to cancerversaries and parentversaries, and the differences. I’m still reeling from the anniversaries of the deaths of my parents in 2004 and 2007. But year by year the grief softens into fond memories, unlike the cancer anniversaries. Thank you for your profound insights into what must be universal for all of us if we are honest enough to grasp it: cancer is truly not a gift.

  17. Kathi,
    WOW! You get it and got it – I am blessed by your phenomenal talent of taking mere words and creating a masterpiece – you are an artist. Beautifully written -golden nuggets for life – inspiring.

  18. OMG, Nancy!! I’m so glad you commented so that I could discover your website!!!

Leave a Reply