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Staying the (cancer) course

Posted in Health, and Women's issues

wall-women

Being diagnosed with breast cancer in October is a double curse: it’s breast cancer awareness month, the time of the year when pink ribbons are trotted out, sob and inspiring stories fill the airwaves and surgeons are paraded on radio and tv to, in effect, market their hospitals. It’s inescapable. And yes, I am very aware.

I am doubly aware of the stupidity of those pink ribbons that will be mothballed in a week or so, meant to make a deadly disease more marketable.
I am aware that, wherever I turn, I am reminded I have cancer and I am not allowed to forget for longer than thirty minutes at a stretch (Amy Schumer has helped in that regard).
I am super aware of people’s ignorance of a disease that has been publicized to death and been reduced to sound bites. For a variety of personal reasons, I know more than most, and I am now realizing how hard it is to dispel myths and misconceptions about breast cancer. I want my friends and family to be comfortable asking me questions, and I certainly don’t blame anyone for not knowing – if anything, I blame the media for cherry picking the information that “sells”.

Among the things I have been asked:

  • have you been genetically tested? No, I am not Angelina Jolie and, as much good she has done in coming out publicly and perfectly explaining her (wise) choice, what stuck is that Angelina Jolie had her boobs cut off because of her genes. Women affected by the so-called BRAC 1 gene are a tiny minority of those diagnosed every year, less than 1%. I didn’t get tested because not a single woman in my family, going back three generations, has ever had breast cancer and there is no Eastern European Jewry in my family tree;
  • did you feel a lump? No, I didn’t. To this day, all the doctors who have touched me, pricked me, examined me every which way can’t feel a damned thing;
  • what stage is it? 2A and grade 1/2 and yes, those are good things because it means it is small but every cancer is different and, as slow-moving as mine is, nobody can give me the certainty one little cell hasn’t taken a hike around my body only to reappear ten years from now;
  • couldn’t they tell from your blood tests? No, routine blood tests do not detect cancer (unless it is so advanced white cells will alert a doctor something is wrong). There is no blood test to determine cancer or, at least, there are some in the pipelines, not widely available and not yet reliable on a large-scale;
  • did you take hormone replacement therapy for your menopause symptoms? No, I didn’t and yes, they are linked to cancer if taken for long periods of time;
  • and then, the one that hangs in the air but not quite uttered? Are you going to die of this? Maybe. I don’t know. Probably not in the short-term. Maybe never. There is no way anyone can tell me in certain terms.

JR_ShanghaiThe most difficult aspect of this ordeal is not the shock (it goes away), the acceptance (not much of a choice), the surgery (I am not scared) or the therapy that will follow (it will most likely suck but I can deal). It’s knowing this is forever. Knowing that every mammogram from here on will cause blood pressure raising anxiety, that every sniffle and harmless symptom will take me to THAT place, that this is indelibly imprinted in my makeup. And yes, a large amount of women never ever experience a reoccurrence. But I don’t know and I will never know and I will need to learn to live with this uncertainty, with this utter lack of control.

As I was navigating the meandering bureaucracy of the American health system, and sitting in my primary physician’s waiting room to see her for the needed referral, I yielded to the only pleasure afforded in those waiting rooms: gossip magazines. My dentist has the most current but, here, I had to make do with an oldish copy of People with Jackie Collins (see? inescapable) on the cover: her first interview since she declared she had breast cancer and swiftly died. In an instance of deep perversity, I read the whole thing: how she found a lump five years before being diagnosed; how she chose to ignore it; how she eventually went to the doctor because she had other symptoms; how her cancer had metastasized everywhere and was a whopping stage 4. Jackie Collins was doctor phobic and she had convinced herself her lump was benign. She was at peace with her decision and, as stupid as it sounds, I understand her. Every woman has a choice and should follow her instincts. In her words, she had five wonderful years in which she didn’t have to worry about disease.

Which brings me to what I really wanted to talk about: the new mammogram guidelines just issued by the American Cancer Society (when I say it’s inescapable…): amongst other things, they are suggesting to start screening at 45, rather than 40; to screen every year between 50 and 55, when most women go through menopause, and then  every other year (you can read the whole thing here).

Artist: Vinie Graffit
Artist: Vinie Graffit

I know many of my friends ask me questions to compare and assess their risk based on my story. I am here to tell you there is nothing I could have done differently, I have no reassurance to offer. All I can, and really want to tell you, is that the studies on which the (probably very wise) guidelines are based on are large population studies, from which data is averaged and extrapolated. They don’t, and cannot, speak to you directly.

What you can and should do is discuss your comfort level with your doctor. If your doctor doesn’t seem well-versed, find one who is. Do what feels right to you. Go every year or don’t go at all. Maybe the stress of a potential positive test that will require more tests is something you don’t want to submit to. Fine. Don’t let anyone judge you. But be informed and tune out the soundbites. No one else will do it for you.

My bit of deserved good news is that the MRI I took doesn’t show any further cancer anywhere else in either breast. So, with my surgeon’s blessing, I will be heading to New York this Thursday to join Sue on a Brooklyn sofa. Campari & Sofa takes New York. Stay tuned.

Wall Women by JR

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19 Comments

  1. I am so sorry, Claudia. Very brave to write this post.

    October 30, 2015
    |Reply
    • camparigirl
      camparigirl

      Thank you Stefan.

      November 2, 2015
      |Reply
  2. Ah, the guidelines and questions about breast cancer. Like you, I know a little more than the average person (I worked for a national cancer database back home, and my job was to write down the info I had on the medical files into a computer, including diagnosis methods and types of treatments). Sometimes I think the press likes to glamourise everything, and make everything “fashionable” – so instead of informing people, they just use the info that’s useful to them and make headlines that sell. As for how things are to be done, it’s certainly not the first time test guidelines have been changed due to costs, nor can we say doctors know it all and can help us all the time.

    I think, in the end, your advise is the most sound: trust yourself. Trust yourself to research if you want to, or just go with your gut and do what you feel is appropriate for you. Never mind the soundbites – all it matters is you, and how you’re at peace with your decision. All in all, I’m just glad you trusted yourself to get tested every year and now have decided which course to take – and by that, of course, I mean the trip to NY 🙂

    October 27, 2015
    |Reply
    • camparigirl
      camparigirl

      I happen to be married to a cancer researcher which turned out to be extremely useful! I have always been a big proponent of being our own advocates when it comes to health matters but I find it really sad that so much is left to the patient to research, evaluate and eventually decide upon. I am right now researching all the side effects of different treatments for when I meet with the oncologist, as I want to be prepared instead of just being told what to do. A lot of medical care is routine treatment, without taking into consideration the individual and I would not rather fall into that trap.

      October 27, 2015
      |Reply
  3. Best news about the MRI and I’m so happy that you get to go on your NY trip. I hadn’t heard about the new guidelines and that upsets me. My overseas, regular care, was mammogram AND ultrasound. Since I have dense breasts, the extra screening always made me feel secure. Here in the U.S., I fight every year to get both approved. You know my biopsy horror story, and I remember so well the concept of “maybe I’ll be living with this forever.” I was lucky, this time, but the fear is still there. But then again, I fear the LA freeway. I fear Nextdoor app and reading about so many burglaries in my neighborhood; I fear our upcoming earthquake and am frustrated that I still haven’t made our emergency kit. I empathize with your situation: as you you stated: “every sniffle will take you to THAT place” THAT does, indeed, suck. But maybe as time goes on, and years pass, and you see how strong and healthy you are, every sniffle will just be a sniffle–at least I hope so.
    Love and best wishes.

    October 27, 2015
    |Reply
    • camparigirl
      camparigirl

      I declined to accept my neighbour’s invitation to subscribe to the neigbourhood network and, when it comes to freeways, I am probably one of those who cause terror. Another three years in this city and you will be fine!

      October 27, 2015
      |Reply
  4. Hmm I’ll admit I’m a bit doctor-phobic too. Before last week, I probably couldn’t tell you the last time I saw a doctor (a combination of not needing one, and believing I could self-manage/self-medicate). But after spending a week thinking that I’d developed an arrhythmia, I finally saw a doctor …and was told I had nothing to worry about. Of course, I was relieved, but, me being me, I’m still a bit worried about false negatives. Just can’t win, hey?

    October 27, 2015
    |Reply
    • camparigirl
      camparigirl

      I absolutely understand. Which is why I would never sit here and deem Jackie Collins an idiot. I am at the other end of the spectrum but it’s our individual life and, as long as we are informed and conscious individuals, why judge?

      October 27, 2015
      |Reply
  5. Awesome post. Great information too. All questions I would have (ignorantly) asked.

    October 27, 2015
    |Reply
    • camparigirl
      camparigirl

      Totally ok to ask. In a way, talking about it makes it feel more real and the acceptance easier.

      October 27, 2015
      |Reply
  6. Campari Girl and Sofa Girl reunited in New York? Sounds awesome, and I know you will both make the most of it. Wishing you well…

    October 27, 2015
    |Reply
    • camparigirl
      camparigirl

      New York doesn’t know what is about it her!

      October 27, 2015
      |Reply
  7. Elena
    Elena

    You are a wonderful woman. Love Elena

    October 26, 2015
    |Reply
    • camparigirl
      camparigirl

      Not sure it is wholly deserved – I have my moments – but thank you Elena.

      October 27, 2015
      |Reply
  8. I am sorry you are going through this. You certainly bring this disease from a commercialized byline to a much more personal issue. I wish many blessings for your full recovery and “fuck cancer”. xx

    October 26, 2015
    |Reply
  9. I caught a TV segment on the new guidelines this week myself (thought of you…inescapable) and there was a panel of doctors reacting to the guidelines. I watched the discussion all the way to the end, seeking definitives…All the doctors disagreed with the guidelines, said they could result in even more undiagnosed cancers.
    I left with only one conclusion: we’re fucked.

    Anyhoo, woo-hoo you’re Brooklyn bound! I got a list to make!
    XO!

    October 26, 2015
    |Reply
    • camparigirl
      camparigirl

      As I was lying very still for my MRI, trying to distract myself, I started thinking of the wondrous and giant steps medicine has taken since “The Knick” (do you watch it? I am a big Clive Owen fan). But for all the amazing progress, a lot of how to treat and face disease is left to the individual.
      Looking forward to the list.

      October 27, 2015
      |Reply

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