Get Out of My Hair

So here's the thing about talking to a woman (this woman) about her (my) hair after chemo.  Don't.

If you really must, if you're dying to say something, just say, "you look great."  Even if I don't.   I have one friend who always tells me that I "look fabulous, very European," every time I see him.  That's okay too.  It's a very fine line.  Few people can walk it well.

I know, talking about someone's hair after chemotherapy seems like the nice thing to do.  I'm sure that I've done it before to people who have gone through chemo.  It's the most obvious and physical sign that cancer treatments are over, and everything is getting back to normal.

Maybe talking about hair feels like a good way to break the ice after a year of cancer.   As if to say, you're looking healthy.  In the beginning, after I stopped wearing my wigs, it was great and even encouraging to get so many compliments on my downy soft, new hair.  I felt like a rock star--a rock star who had just gone through a year of cancer treatment.

But, really, unless I bring it up now--my hair is off limits.  I don't care how great it might look or how great you thought it looked a few months ago.  It's not my hair by choice.  My hair (the good, the bad, and the ugly) looks the way that it does, because I had breast cancer.

My hair is a constant reminder that I had cancer.

No, I am not going to keep it short.  No, I don't know if it will stay curly (I've never had cancer before).  No, it's not easier to take care of when it's short.  (It take hours and a ton of products to keep this hair from not looking like Buckwheat's).  And, no, I do not like the new nickname "Curly."  Really, I got one that last week.

I may talk about about it.  But, my hair is a bit like a crazy family member.  I can say what I want about it, but it doesn't feel right coming from other people.

So, you see, it's a bit of a sensitive subject.  I have days when I'm not thinking about cancer--and then I look in the mirror or someone comments on my hair.  And, I am reminded that I still have to deal with this hair--and the fact that I had cancer.  I don't need a reminder.  I have and will always have many, many reminders.

It's true, these unruly chemo curls of mine are better than the old wigs for sure.  And, I know that I am incredibly lucky to be a breast cancer treatment survivor.  I am lucky that my biggest complaint is about my hair.  I am lucky.  I really am.

But, here's the thing that's hard, I just don't look or feel like me with this hair.  I survived a year of cancer treatment, and now I am (still) stuck with impostor hair on my head everyday.

It's a sensitive subject, because, I really just miss my old hair.

I have said it before, "it's all about the hair."  And, it seems it still is.


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Breast cancer alone can be terrifying, but the breast cancer community is empowering.

"Cancerexic"

With a clear PET scan a few weeks behind me, I'm trying to find balance in my life after cancer treatment.

I've said it before.  I knew this year would be hard.  When I was being treated, I had a routine, a protocol, a schedule.  Now, I'm left with a very passive treatment protocol--tamoxifen once a day, follow up appointments at Sloan Kettering every four to six months and little scientific data on lifestyle changes to help prevent a cancer recurrence.

Research indicates that increasing your MET levels (metabolic equivalent of task) 5 times a week decreases your chance of a cancer recurrence.  So I am on the treadmill 3-5 times a week increasing my MET levels.

And diet change.  Anti Cancer:  A New Way of Life by David Servan Schreiber cites research that shows that a diet low in refined sugar and flour and high in dark green vegetables and bright red fruits helps a body build a strong immune system and prevent a cancer recurrence.   The New York Times magazine recently had many articles about cancer, but one in particular ("Is Sugar Toxic?" by Gary Taubes http://www.nytimes.com ) was about levels of insulin and sugar feeding precancerous cells--specifically colon and breast cancer.

Watching what I eat and what I don't eat has turned into a bit of an obsession.  My obsession with preventing a cancer recurrence has turned me into what I call a cancerexic.

To be clear, I am not obsessed with my weight.  When I last weighed in at Sloan Kettering, I was back to my pre cancer weight.  All good there.  But, I am obsessed with following the best exercise and diet protocol for preventing a recurrence of cancer.

So I eat Brussels sprouts, kale, nuts, berries; I (try to) drink gallons of green tea; I reduce the refined flour and sugar and dairy in my diet. 

Some days it all works out just fine.  It's my new routine--my life after cancer.  I get on the treadmill.  I eat well.  I live my life.  And, I don't even think about it.  I'm on anti-cancer auto pilot.

But, other days I worry.  Actually, I obsess.  I obsess that I didn't get on the treadmill; I ate too much pasta at dinner; I had a brownie at Passover; I didn't eat kale all day.  

Cancerexia--obsessive compulsive thoughts of preventing a cancer recurrence. 

I recognize the value in my obsession.  It keeps me eating better foods and exercising regularly.  But, I some days I need a little (a lot) more balance. 

That's where my work is now--a year after breast cancer.  I am trying to find the balance in living my life and preventing a cancer recurrence.

It's my hardest job ever.

I plan to have it for a very long time.



If you know someone who could benefit from or would like to read this blog, please forward the link to them.beingmemovingforward.blogspot.com

Breast cancer alone can be terrifying, but the breast cancer community is empowering.

Luck and Laughter

A few years ago, Jay gave me a necklace with a pendant that says "may you have luck and laughter" written in ancient Greek.  I wear it every day.  The necklace is beautiful.  I love the way the gold feels.  Just touching the pendant makes me relax and smile.  The jewelry designer, Caroline Ellen, makes all of her pieces by hand.  They are beautiful and feel like satin. 

When Jay gave me the necklace, I thought the saying was fine but not particularly romantic or meaningful.  I didn't understand then how important laughter was and how little of it I had in my life.  I was so preoccupied and uptight about getting E. and A. to school on time, making sure A. had his naps and E. had play dates, and just getting through my daily, monotonous mom duties.  I forgot to prioritize laughter. 

I wore the necklace through all of my treatments.  And, on the days that I really didn't look or feel like myself, the necklace reminded me of who I was before cancer--and who I would be after the year of treatment was over.   

I still wear the necklace everyday.  And, four years later, I get it.  May You Have Luck and Laughter.

I get it. 

Luck and laughter.  I'm ready for a lot of luck and laughter.

Caroline Ellen pendant*

* Caroline Ellen at carolineellen.com and peridotfinejewelry.com

short phonecall . . . giant relief

I just got the call from my oncology nurse, Kathleen, with the news that yesterday's PET scan was clear (http://en.wikipedia.org/wiki/Positron_emission_tomography).
 
Ovaries, bones, lungs, liver--all clear. 

No Evidence of Disease.  Anywhere.

I promised myself that if this test was clear, I would give myself (and Jay) a long break from worrying about cancer.  The worrying has become all consuming--like back in the days of my original diagnosis.  And, quite honestly, it's been ruining my life.  I'm a worrier.  But, worrying about metastasized cancer is worrying on a whole new level.  It is bottomless, and it is dark.

So, now, I'm done (and relieved).

The PET scan is clear.  I'm moving forward, really.

The Overexamined Life

The last part of my breast cancer treatment is a small white tablet, Tamoxifen.  I take one a day, and I will take it for five years.  The side effects vary.  But, for me, they have been minimal.  I don't sleep through the night, and my joints are a little stiff every morning.  But, it's hard to tell if that's from Tamoxifen or a year of breast cancer treatment.

Tamoxifen is interesting.  Here's a little science and the history.  Tamoxifen was first developed and tested as a fertility drug as it affects estrogen production.  But, it also inhibits cells from receiving estrogen.  So it was a failure as a fertility drug, but it is perfect for women with estrogen receptor positive breast cancer.  It works as an estrogen blocker.  Cancer micro cells are unable to receive the estrogen they need to grow.

So I take it every day, my little white pill of insurance that my estrogen will not feed any lingering cancer micro cells.

Tamoxifen can also cause thickening of the uterine lining (which can lead to uterine cancer) so it it standard to have a baseline uterine sonogram and biopsy after taking Tamoxifen for a few months.

I went to my gynecologist Friday for my first routine, standard uterine sonogram and biopsy.  She told me my uterus looked great, the uterine lining looked thin (also great), my copper IUD was in the right place (more good news).  And, then she said, "oh, (pause) that's interesting."  NOTHING DURING A ROUTINE BIOPSY IS INTERESTING.

"It looks like you have a cyst on your right ovary.  Do you get cysts on your ovaries?"  NO, I DO NOT AND HAVE NEVER HAD CYSTS ON MY OVARIES.

More probing and sonogramming, and again she said "oh, (pause) and it looks like you also have a cyst on your left ovary."  THIS IS NOT WHAT I CAME IN FOR.  

She went on to tell me that both cysts were approximately 4 cm and did not look suspicious at all--liquid filled, not surrounded by fluid, yadda, yadda, yadda.  But, because of my history, she said, I should follow up with my oncologist and see how she wanted to proceed.

When my radiologist found my breast tumor, she also told me that my tumor did not look suspicious.  Deja vu all over again. 

I held it together for the rest of the appointment. I got dressed, walked out of the medical building, got into my car and called Jay.  And, I just started to cry and cry and cry in that full on "I have had enough cancer, cancer talk, and cancer scans cry."

I have put in my time and been optimistic for a whole year.  I am done.  I'm tired of looking on the bright side.  I'm tired of not worrying until it's time to worry.

I'm not an optimist by nature.  I've been working hard at it all year.  Healthy attitudes yielding greater life expectancy and all that.  Blah, blah, blah.

Some people are Tiggers, some are Eeyores.  I am a Rabbit.  I am a full on worrier.  To the outside world I may look like a relaxed woman with a husband, two kids and a regular yoga practice, but no.  My name is Barbara, and I am a worrier.

And, I had really just stopped worrying about a cancer recurrence every day--all the time.  I had stopped thinking about how many of Elizabeth's and Andrew's milestones I would be around for.  (Elizabeth's bat mitzvah in 2013, definitely.  Andrew's bar mitzvah in 2016, no guarantees).  That's how I had been walking around for awhile.

In the past few weeks, though, I had really started trying to live my life like a regular person with regular life expectancy.

And, then, BOOM!  Ovarian cysts.

I called my oncology nurse when I got home and left a message.  When she called back (an hour later) she told me that ovarian cysts are normal in all women, and she was not worried.  She was not worried--at all.  And, I should not worry.

I am going to Sloan Kettering for a PET scan this Wednesday (scheduled before the ovarian cyst discovery).  PET scans find any and all tumors (not micro cells, but full on angry tumors).  I will have the results a day or two after the scan.

This is my life now.  I am going to be examined and over examined.  (Is the unexamined life worth living?)  And, doctors are going to find things--cysts, polyps, tumors.  And, every time I am going to be on this emotional cancer roller coaster hoping that what they find will be nothing. 

So, now, today, I am doing what Kathleen, my oncology nurse, told me to do.  I am not worrying.

That's a big fat lie.  I am terrified that there is cancer growing in my cancer factory body again and that I will have to meet a new team of experts at Sloan Kettering and start the whole awful cancer treatment ride--again.

That's Rabbit, the worrier, talking.

I'm trying hard to be more like Tigger.

by A. A. Milne

Hoo, hoo, hoo . . . TTFN!

If you know someone who could benefit from or would like to read this blog, please forward the link to them.

beingmemovingforward.blogspot.com

Breast cancer alone can be terrifying, but the breast cancer community is empowering.