Thursday, January 12, 2012

An Afternoon in Cancer-land

I had my 6-month oncology check-up a week ago, but I've been putting off writing about it.  I don't know why.  But now I'm stuck at home on a snow day...A is sick and still in bed.  I had to cancel my trapeze lesson due to pain/spasms in my lower back, but I can't even get to my chiropractor's office because that would mean shoveling the driveway, which my back can't handle.  So here I am stuck at home, and I might as well write, right?

Last Thursday was my 6-month check-up, and it was with a new oncologist, since my previous one is no longer practicing in the cancer center I go to.  It was also the 2-year anniversary of my lumpectomy.  It would have been an emotional, stressful day for me just because of all of that, but in addition, someone I love (who I won't name, out of respect for their privacy) had an appointment elsewhere in the building at the same exact time, because they had 5 out of 7 symptoms of a scary kind of cancer.  So my fear for my loved one's well-being pretty much eclipsed my fear for myself, and I was so distracted because of it.  We made plans to meet in the main lobby when we were both done with our appointments.

My new oncologist, Dr. J, spent 45 minutes with me because it was our first visit - I was used to these appointments being only 15 or 20 minutes.  We didn't hit it off too well, I'm sorry to say.  Then again, I totally got off on the wrong foot with my first oncologist, too, and then our connection improved perhaps I just need to be patient and give it a chance with Dr. J.  What stressed me out was that Dr. J wanted me to have what felt like a gazillion tests and procedures, not because she was really worried about my health, was the impression I got, but simply because that's how she does it with all of her patients.  I've been feeling really great for months, trying my best to eat well, sleep well, exercising (there's always room for improvement, but I've been walking fairly regularly), de-stressing, taking all of my anti-cancer supplements along with the Tamoxifen, and continuing to educate myself on/engage in activism against environmental toxins.  I haven't been worried about the possibility of a recurrence.  I felt like I was happily living far away from cancer-land.  But these stupid cancer check-ups are a reminder that I will never get away from cancer-land... I will need regular check-ups of some kind for the rest of my life.  Dr. J wanted me to schedule a bone density scan, a pelvic ultrasound (to assess the cause of my irregular/heavy menstrual bleeding - which I'm sure is a Tamoxifen side effect, not a third cancer, geez), and have more blood work, a flu shot, a mammogram, and consider genetic testing.  I only agreed to half of that, declining the last 3 items.  Dr. J is super bothered by my refusal of mammograms, telling me that mammograms really aren't optional.  But it's my body, and I'm not willing to have that much radiation.*

The appointment dragged on and on, and ended with her telling me she wants to see me again in four months, because she's still getting to know me.  I was dismayed, for I had been expecting to not need a check up with her for at least 6 months, maybe a year...considering I'm now over 2 years past diagnosis.  Having my oncology appointments instead increase in frequency - along with the increase in tests and procedures - makes me feel cranky, too immersed in cancer-land once again.

Once I got my clothes back on, scheduled all of the stupid tests and procedures, and had my 3 vials of blood drawn, I practically ran to the main lobby to find my loved one.  They were there, waiting to go into the lab for blood work and an X-ray.  Within minutes, they were whisked into the lab, and I had to sit there for a full hour, so scared, waiting to hear whether or not it was cancer.  Then, they came running out, gleefully telling me it was a virus, not cancer.  Relief washed over me.  Never before have I been so thrilled by someone being sick with a virus!

There are so many things I hate about cancer; I hate having the fear of it lurking about.  My logical brain knew that it was very, very unlikely that that person I love had cancer... but that's what I had thought about myself, too, and twice now I've had the experience of being told, "Oh, it's probably nothing," and then finding out, BOOM, it's CANCER.  That has skewed everything for me and it's a constant challenge to maintain perspective and logic and not let the fear win.  Even young,  healthy, fit people get cancer.  Even cancer survivors who have been given an excellent prognosis and have a low risk of recurrence and feel certain that cancer is a thing of the past can end up dying from the cancer a year later (see my previous post).  We really just never know and there are no certainties when it comes to cancer...or anything in life, really.  Do I sound like a broken record when I say that all we can do is take life one day at a time?  Sometimes it's one hour at a time, one minute at a time, one breath at a time.  Inhale, exhale, repeat.

*By refusing annual mammograms, I'm not making a fear-based, uneducated decision.  I have thought long and hard about it, and have read a lot about mammography and other breast cancer detection methods, and have talked with many people about it, including medical professionals.  And I'm choosing annual breast MRIs.  My surgeon, who is also the director of the Breast Care Program at a National Cancer Institute Designated Cancer Center, has approved that choice.  She told me, "You know that if I felt strongly about your need for annual mammograms, I would beg you to do it, like I did with radiation therapy."  And that right there is good enough for me!  If something shows up on the MRI, of course I will get the recommended follow-up ultrasound, mammogram, biopsy, etc.  And I'll continue having at least 3 Clinical Breast Exams (CBE) per year, from my oncologist, surgeon, and gynecologist, and possibly thermograms on occasion.  I will consider having an occasional mammogram.  I will consider having mammograms on a more regular basis when I'm older and my breast density has decreased.  I have very dense breasts, like most young women, and I have a report from the radiologist who interpreted my mammogram a couple years ago that clearly says that my very dense breast tissue decreases the sensitivity of mammography.  On mammograms/X-rays, dense breast tissue shows up as white, as does cancer, so it's like...what's that expression...trying to find a polar bear in a snowstorm.  I see no point in annually exposing my breasts TO A CARCINOGEN (radiation) for the next SIXTY FIVE YEARS (ish), when A) it's really hard to detect cancer via mammogram, given my breast density; and B) the more mammograms I have, the more my risk of cancer increases.  I've already had a shitload of radiation to my breasts (the radiation therapy, I mean).  And we're all exposed to so many carcinogens on a daily basis, most of which we're not even aware of, and cannot avoid.  Thus, if there are carcinogens I can avoid, I will avoid them.


  1. Have never commented on anyone's blog before thus going with anonymous status to avoid various cookies but I felt compelled to write to you. I am a regular trapeze flyer recently diagnosed with breast cancer. My double mastectomy is this Thursday and I decided to go with the reconstructive surgery that requires my pecs be stretched. I am terrified I will never fly again and am considering, against my boyfriend's wishes, and everyone's advice, to cancel the reconstruction, live with a scarred chest, and preserve my pecs. Any advice and feedback would be very helpful. I'm trying very hard just to sleep well and make good decisions prior to surgery so won't get to look further through your blog until tomorrow night, but what I've seen is already interesting and informative. Thank you! - Kat

  2. Kat, I'm so glad you found my blog, and I'm so sorry you have to go through this cancer journey, too! "Welcome" to the "club" no one wants to be a part of! You can email me at to talk privately, without having to give your email address on a public blog.

    You know what, we trapeze artists with breast cancer are quite rare, I think. We're paving our own path. My surgeon gave me the choice between lumpectomy and mastectomy, and I agonized over the decision. Seeking advice, I emailed a handful of very experienced circus women I knew - former Cirque du Soleil performers, Executive Directors of circus schools, aerialists who had performed internationally, etc. - to ask if they knew of any aerialist who had had a mastectomy and was still doing aerials. I figured that the women I emailed would know lots and lots of people in the circus world so they were my best bet. In response, I received much sympathy and good wishes, but not really the info I had been hoping for! Someone did pass on the name and phone number of an aerialist who I could talk with, but I didn't follow through with that because I have issues with the phone, ha. And someone else gave me the email address of a very-athletic-but-not-aerialist friend of hers who had had a double mastectomy without reconstruction. I emailed her and she said she "loves being flat-chested" and does yoga, runs, and plays basketball.

    SO, I don't actually know of an aerialist who has had a mastectomy (with or without reconstruction). It's quite possible that there ARE women out there who are trapezing post-mastectomy, but we just don't know who they are.

    All you can do is make whatever decision feels right in your heart. What feels right to YOU is most important, regardless of what your boyfriend, family, doctors, society, etc. wants you to do. It's your body and your decision. Since whether or not to do reconstruction is not a medical decision, it makes it very personal. There is no "right" choice, objectively speaking - it's a matter of what feels right to you and what your priorities are. There are pros and cons to everything. I don't know whether you'd be able to trapeze after recon/pec stretching...I don't think anyone can know that for sure. Do you have to have the reconstruction immediately following mastectomy, or is it a delayed reconstruction that happens in stages? As you probably know from my blog, I ended up having a lumpectomy + radiation instead of a mastectomy. I don't know much about reconstruction (other than there are multiple types and it confuses me! :)), because I had felt strongly that if I chose to have a mastectomy, I wouldn't want reconstruction. I felt that way because my body's functionality/ability was more important to me than its appearance, and I did worry that reconstruction would limit my trapezing. I didn't want to go through any more surgeries than medically necessary, because any surgery is dangerous. The idea of having reconstructed breasts was also unappealing to me because my new breasts wouldn't have had any if they were for "looks only," I didn't want them. At the time, I was single and planning on staying single, so I'm not sure how being in a relationship would have affected my decision to not have reconstruction.

  3. (cont.)

    Kat, you're faced with such difficult decisions that I wish no woman had to make! If it's possible to get the double mastectomy on Thursday but delay reconstruction so you can think more about it, I'd recommend that. If the reconstruction has to immediately follow the mastectomy and you thus have to decide by Thursday, then I'd say, go with your gut. I know it's hard to even hear your gut with so many other voices around you.

    I'm guessing that not having reconstruction would be the option that would be best for trapeze purposes, in the sense that you'd be preserving your pecs, and you would recover from surgery quicker, and thus be back on the bar sooner. And there are plenty of trapeze tricks that would be so much easier without breasts, you know?? But the question is whether not having reconstruction would be the best for you *psychologically*, and how to weigh that against your desire to keep trapezing. Would you feel okay with having a scarred chest and no breasts? Would you get used to it? There are prosthetic breast options that you could choose to wear, or not. At one of the breast cancer message boards I used to go to, there was a discussion of whether or not to get reconstruction... some women said that they wanted reconstruction because they didn't want people looking at their flat chests/didn't want the effects of the breast cancer to be so visible, because people would be judgmental. Other women said that they felt like their flat chest would be an "instant asshole-detector" - anyone that was bothered by their flat chest wasn't someone they wanted to associate with anyway, because true friends will love you for who you are. Some women felt a sense of freedom when they no longer had to wear a bra, and even enjoyed mowing the lawn topless in the summer. Some women got beautiful tattoos on their mastectomy scars, instead of reconstructed breasts. Other women felt like having no breasts would be too great a loss to their femininity, and they needed breasts to feel whole. The extra surgery was worth it to them, to have their bodies looking as similar to their pre-cancer bodies as possible.

    It really just is very personal. I wish you lots of luck and strength. It's great that you're resting and sleeping well; that will help with everything. Email me if you want to talk more!!

  4. OH, and you might have already figured this out, but you can go to the "tag cloud" to the right and click on "trapeze" (it's alphabetized) to see the blog posts that are about trapeze...without having to wade through every entry!!

  5. Happy to find another aerialist in the air after breast cancer. Everyone's breast cancer is so specific and individual with so many variable, and with that being said I am a trapeze artist and have had a double mastectomy and breast reconstruction and have been able to do aerials and bungee trapeze through my reconstruction and 2 weeks ago I just took my first swing after after 1 year. I worked closely with my surgical oncologist and plastic surgeon to get me back in the air. I feel very lucky that I will be able to probably get back to more flying soon.

  6. ps... this was a different anonymous replying than Kat. Kat was actually the one who found me and told me about you, Britta. I do know a couple of other reconstructed aerialists that are performing. So far I am the only flyer that I know of and certainly the only one my surgeons have faced. So it is possible.... :-)