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.

Saturday, January 7, 2012

Diana & Lily

In June 2009, I accepted a summer babysitting gig, for a sweet baby, just a few hours a week.  The family lived in New York but had a summer home here in New England, close to where I lived.  I had a really good feeling about the baby's mom, Diana, when I met her...and baby Lily was an absolute doll.  I wore her on my chest in a baby carrier, and we strolled in the summer warmth and light, over the covered bridge, and on the rail trail walking path.  The greenery was so lush around us.  And when the sun went down, I lay the big white cloth out on the bed, swaddled sweet Lily in it the way Diana told me she liked, and rocked her in my arms.

After just a couple weeks of babysitting for Lily, I showed up one afternoon as scheduled, and knocked, and no one came to the door.  I knocked and knocked, and tried calling Diana's cell phone, but she wasn't there.  I waited 20 minutes, and then I went home to check my email and see if there was any message from her.  And yes, she had emailed to tell me that the "flu" she'd had for a few days was more likely pneumonia, and she was in the hospital.   Two days later, another email... she told me she had leukemia, and was returning home to NY for chemo.  She closed with "I so enjoyed meeting you; your sunniness will stay with me as I start this journey," and I was so shocked and sad, because she had seemed so healthy and vibrant to me.  I was angry that cancer was stealing her and Lily away just as we had been getting to know each other.  Diana and her husband's wedding anniversary was in a little over a week and I was supposed to babysit that night so they could go out and celebrate.  Instead, she was spending that time in the hospital.

Three months later, Diana emailed me again to update me, saying how she was feeling so much better now, and that despite needing a bone marrow transplant soon, she was "completely certain that [she]'ll
get on the other side of this, get a huge tattoo that says 'Survivor,' and get on with life."  I wrote back with well wishes for continued healing... and a month later, had my breast lump biopsied, and was shocked to be given a cancer diagnosis of my own.

Six months passed.  I frequently wondered how Diana was doing, but we hadn't emailed...and then one day, the week I started radiation, I got the strangest voice mail from her - it was just 3 minutes of her having a conversation with someone, probably her husband.  It sounded to me like she had sat on her phone and called me accidentally.  I could hear Lily making happy baby noises, and banging some toys together, and I smiled.  I emailed Diana to tell her I'd received that probably-accidental voice mail, and asked how she was doing, and told her about my cancer.  Isn't it so strange, I mused, that she and I both had cancer when we met each other and had no idea.  And we were both in our 30s and so healthy!

Diana wrote back and was just as shocked and sad about my cancer as I had been about hers, but was glad to hear that I was recovering well and had such a good prognosis.  "I think my prognosis is excellent too...," she said.  " this point it's all recovery."  In that email, she shared with me her thoughts about cancer, and ended with:

"I had a vision, last time I visited the doctor (at an entire hospital for cancer patients), that cancer is a certain kind of demanding spiritual path, and everyone who has it has been chosen for it.  It's easy for me to see it that way now that I'm done with treatment and recovering.  But it's an interesting vision.

much love

That was a year and 8 months ago, and it was the last time I heard from her.  This past week, I was thinking about her, and made a mental note to email her soon and see how she's doing now...hoping we could share stories of how well we're recovering.  This morning, I woke up to an mass email from her husband, a "reminder" (although I never received the first notice) about Diana's upcoming memorial service.  She died last month.  I didn't know.  I had been picturing her happy and healthy and enjoying time with the now-toddler Lily.  Hearing of her death was such a blow....she was a vibrant and kind-hearted woman.

Diana and I signed our emails to each other with variations of "much love," even though we'd only had about 3 weeks together, because there is a kinship between those of us who have been face to face with the cancer monster.  We both had undetected cancer when we met each other.  We both were treated at the same hospital.  We both had excellent prognoses... so why am I so healthy, and why is she DEAD?  I hate cancer.  Cancer is an ugly serial killer that does not discriminate... it takes down parents of little children, and little children themselves; people of all ages, all races, all professions, all parts of the world.  When I was 19, cancer took away my friend Cory, a single mother in her 30s, leaving behind her 7-year-old son with autism.  Cancer stole Cory when "Chicken Soup for the Survivor's Soul" was literally open on the nightstand next to her hospital bed, just like it stole Diana, a young woman with a baby daughter, who was ready to "get her 'Survivor' tattoo and move on."  Cancer doesn't give a damn, it takes who it wants to, and having an excellent prognosis, and "complete certainty" that you'll fully recover, is no protection.  It makes me wish that cancer was a corporeal being so I could bash its kneecaps in with a hammer.

May you rest in peace, Diana.  I wish we had had more time together.

Monday, January 2, 2012

Happy New Year!

Several of my family members write New Year's Goals (note: not resolutions), and one of my family members even writes extensive lists of New Year's Goals in over a dozen categories - which works really well for him and is really important to him. I used to write New Year's Goals as well, due mostly to family pressure to do so, but I stopped years ago. For a few years I felt guilty for not doing it, assuming that some personal flaw made me averse to goal-setting. Now I'm secure with who I am and what my life is about - I'm process-oriented, not goal-oriented!

Instead of setting goals that can be checked off a list when accomplished, I set life-long intentions for how I want to live:

Always put love first.
Keep growing and learning.
Maintain an awareness of my place in the interdependent web of life.
Be honest and real.
Support and strengthen my health.
Support and strengthen the health of the Earth.
Try my best.
Increase sisterhood and women's freedom in whatever ways I can.
Do what I can to make the world a better place for children.
Say "Thank you" and "I love you" on a regular basis and never take my blessings for granted.

These are my life-long intentions that I try to live by. Of course, I don't always succeed in that...not only do I of course make mistakes and poor decisions like all humans do, but I know those intentions are rather lofty. It would be impossible to follow them to a T at every moment. :) But I try! These intentions are not just for 2012, nor are they ever things I can check off as "done." They can be approached in many ways. My problem with goal-setting is that it feels too concrete, and doesn't leave room for the ways in which life is constantly changing - often in ways outside of our personal control. If you set a goal to do X, and then decide that doing X is not right for you, are you a "failure" because you didn't "accomplish the goal"? I spent 15 years working non-stop/often full time with young children, and then I burnt out, and quit childcare as my 30th birthday present to myself. Had I set a goal of "Be a teacher" or whatever, I would have had to count that a "failure." But really, my life's mission from the time I was a teenager was to "do what I can to make the world a better place for children." There are many, many ways of doing that, which don't necessarily have to involve being the direct caregiver for children on a daily basis. After I quit childcare [or rather, seriously reduced my hours - I must admit that I still spend time with kids because I can't not :)], I wrote a grant application that resulted in scholarship money for disadvantaged kids to take circus classes. Still a way of following my stated intentions!!

In the fall of 2009, I was all prepared to facilitate a Girl's Circle for a group of 10- and 11-year-old girls at a local library. I had gone through the training, purchased the curriculum and made changes to it to suit the group's needs, gathered materials, arranged my work schedule, etc. I had already facilitated an 8-week Circle and it had gone really well, and this was to be a continuation of it. Two girls were already signed up and as excited as I was. Then... you know where this story is going, right?.... I was diagnosed with breast cancer. And my surgery date was set for 2 days before the Girls Circle was scheduled to start. I had to cancel the whole thing. Had I set a goal of "Facilitate Girls Circle at the library in Fall 2009/Winter 2010," I would have had to say I failed to meet that goal. But I didn't fail at all. I succeeded by surviving cancer, both physically and mentally, and continuing to live a happy, healthy life. Facilitating a Girls Circle would have been a wonderful expression of my lifelong intention to increase sisterhood and women's freedom, but life through me a giant curveball and I had to find new ways. During the 2 years since then, I haven't facilitated any Girls Circles (maybe I still will?), but I have instead increased sisterhood and women's freedom by loaning money to businesswomen in developing countries (through Kiva), volunteering at a fundraising event for research on breast cancer and the environment, helping plan and implement a local fundraiser for two women in my community who are undergoing cancer treatments, volunteering at an event put on by the local Women's Freedom Center, and engaging in online activism in a variety of ways.

I don't set goals that are destinations I must arrive at, because I have NO IDEA what's coming up ahead in my path. Thus, I set intentions for how to travel the path. These are intentions I can try to live by no matter what happens in my life. When I was in college, I set a bunch of now-seemingly-arbitrary goals, like learn to play the fiddle by the time I'm 35, live in a house by the ocean, become a mother, go to Paris again. MAYBE I WILL, MAYBE I WON'T, but I'm taking life one day at a time and defining success so differently now. My life's intentions are ones that can be practiced whether one is a hardworking, married CEO and bestselling author and mother of 5, or a solitary person confined to a hospital bed...because it's not about what you accomplish, it's about who you are.

When I was in the midst of breast cancer treatments, I had bouts of depression because I felt so disconnected from the rest of the world/my "normal life" and unable to "do" anything. Had my goals been as specific as "facilitate a 12-week Girls Circle by Spring of 2010," yeah, I would have "failed." But even during cancer treatments, I could try to follow my life's intentions... I was filled to the brim with love and gratitude for all of my amazingly loving and supportive friends and family, and I was certainly growing and learning (haha, whether I wanted to or not! My mom refers to that 6-month period as my "cancer semester"), and while I was frustrated to not be able to do more/do what I wanted to do in the realm of helping women, I could at the very least write supportive messages to other breast cancer patients on the message boards, blog about my experiences in hopes that my words would be helpful to others, and sign up for a clinical trial that would result in data that would improve breast cancer treatments for future women. And, I comforted myself by trying to remember that while part of me felt useless/isolated/self-centered by not being able to do anything other than be a cancer patient, reality was that I NEEDED to focus on my own personal healing in order to be at all helpful to other women in the future! You know, that whole "put on your own oxygen mask first" thing.

So, if any of you reading this failed to accomplish last year's resolutions or goals, or are feeling apprehensive about the ones you've set this year, or guilty for not setting any at all, I say, don't sweat it! :) Be you. Be the best YOU that you can be, knowing that there are infinite ways of approaching that....including by setting specific goals and objectives if you really want to. If you include "Always keep learning and growing" as one of your goals, then you can't EVER fail, right?? Failing to meet some goal or objective you set is certainly something you learn and grow from, so, you're really always succeeding. :)

What are your New Year's traditions or rituals? Do you set goals or resolutions or intentions of some kind? What works for you? I know that some of my family members really get a lot out of goal-setting, so I hope this post hasn't sounded too anti-goals in general! It's just not MY thing, and that's okay! :)

Happy 2012!!!