Whatever Works

Fun adventure with Auntie N to the Newport Aquarium!

Fun adventure with Auntie N to the Newport Aquarium!

Everyone is talking about Angeline Jolie & her decision to have a preventive double mastectomy.  And everyone’s asking me what I think…

So what do I think?  I think preventive surgery is a very individual decision.  A decision that is best left to the individual to make.  Would I have done the same thing?  Who knows.  My doctors continue to push me to do surgery to remove my ovaries to shut down estrogen production and help “prevent” a recurrence but I have decided (for now) to refuse that surgery.  That’s what works for me.  Undergoing a preventive double mastectomy is what works for Angeline Jolie.

Whatever works.

In general, I feel the medical establishment relies too heavily on surgery and pharmaceuticals to cure all of life’s modern ailments.  I firmly believe everyone would benefit from a more holistic approach to medicine and healing – One that looks at your history, stress levels, outside influences, and mental space just as much as the physical details of our individual body parts. We are so much more than just our individual body parts.  And I can’t get behind any treatment that espouses a narrow-minded, exclusive approach.  Us human beings are complex folks!

The reality is that everyone has an opinion.  A preference.  A different path.  What works for some, may not work for others.  I know I am constantly searching for my path, trying to figure out what works best for me.  Aren’t we all?

My diet is one thing I’m still trying to figure out…  After 8 days with the fabulous Antie N in town my body is still reeling from all the fun we had…  Way more booze than I’ve had in a long time (what I would normally consume over the course of 2 or 3 months I consumed in the span of a week)…  Less sleep…  Lots of indulging (in sweet treats, extra helpings, nibbles of cheese, and empty carbs)…  But it was so worth it!!!   We had a week of fun adventures, play time, girl talk, and truly memorable moments.  So I don’t beat myself up for the indulgences.  It was one kick-ass week with one of my bestest friends.  That’s what life is all about.  My body will re-balance itself.  I’m getting back up on the saddle again. 😉

I actually have Part I of my much anticipated nutrition consult with  Andrea Nakayama scheduled for next week.  I’ve been following her since I read about her in Whole Living Magazine way back in October 2011 – A month before I was diagnosed.  She is a functional nutritionist with a holistic, whole-foods based approach.  I’ve listened to many of her online talks about balancing hormones and restoring the health of our bodies through diet and natural remedies.  I’m so excited to consult with her team about fine tuning my diet and figuring out what works best for me & my body.  If her detailed intake process is any indication of what lies ahead I’m sure our time together will be totally holistic, and very thorough & comprehensive.  I’m psyched.

The other thing I’m still trying to figure out is what’s up for the next chapter of my life.

Auntie N and I are both at a crossroads in our lives.  Having her here this last week, and being able to process that and compare notes was so helpful & therapeutic (for both of us!).  Many people have encouraged me to write.  So I did.  I started writing stuff (other than this blog – which it seems I haven’t gotten around to writing much lately either)…  But I can’t quite seem to get into it.  I don’t feel compelled to write the other stuff yet.  I can’t find my voice.  There’s always something else that takes priority.  Maybe I’m supposed to be writing something different?  Or maybe just doing something different.

One thing I keep feeling compelled to do is use my experience with cancer, the lessons I’ve learned, the insights I’ve gained, and my training as a social worker, to help others through their own difficult periods.  Try to help them figure out what works.

Honestly, I’m just so damn thrilled to even be able to have concerns like this – about my career or fine tuning my diet – instead of living in a haze of treatment side effects and obsessively thinking about my own mortality.  It’s been 5 weeks since my breast reconstruction and reduction surgery.  I’m back to driving again, squeezing in some light exercise here & there, and doing most of my normal every day activities.  The pain is pretty much gone.  I almost feel “normal”.  I guess this IS my new normal…  Normal concerns about what to eat, what job to take, how to stay healthy…  But yet always with this underlying current of questioning, worry, and unknowns.  But I guess we all have that to some degree or another, right?

For now, I will keep searching for answers while still trying to remain open to life’s mysteries.  I will enjoy life and continue making memories.  I will respect other people’s decisions while continuing to honor my own.

And in the end I’ll go with whatever works best.

Peace.  – T

Outdoor painting with Grandpa

Outdoor painting with Grandpa

Nature walk through Wegerzyn Gardens with Auntie N

Nature walk through Wegerzyn Gardens with Auntie N

Making memories at the aquarium!

Making memories at the aquarium!

Having Cancer Does Not Feel Good

breast-cancer-ribbon-2A few days ago the NY Times ran an article in their magazine entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. Everywhere I looked people were re-posting it, adding links to facebook, emailing it to me.  Yesterday, I finally got the chance to read it.

Orenstein takes on a few important topics…   The risk/benefit conundrum of yearly mammograms…  The over-selling of “early detection” as the answer to breast cancer…  Questionable over-treatment and fear tactics…  The unchanged death rates…  And the beyond ridiculousness of the pink ribbon campaign to raise awareness –  I’m pretty sure we’re all aware now.  Breast cancer is big.  It’s wrecking havoc.  We know.  Now let’s use that money for a real purpose, like funding research to find a cure, figure out the causes of cancer, or help metastatic patients live longer.  The messages in Orenstein’s article aren’t necessary new.  But it is nice to see the NY Times giving it press and especially nice to see Orenstein acknowledging the small and often overlooked percentage of us with metastatic disease.

I personally am very leery of frequent mammograms (and other scans for that matter).  I keep reading that the cumulative effect of radiation from regular mammograms actually increases the chances of getting breast cancer.  Kind of ironic, eh?  Just like Tamoxifen increases your risk for uterine cancer.  And breast radiation may cause lung cancer.  And Herceptin may cause heart failure.  Gotta love it.  It’s a constant battle of weighing the odds.  The benefits vs. the risks.

Since being diagnosed in November 2011, I’ve gone through more scans than I care to count and my body’s been subjected to endless amounts of radiation.  In my new approach to this disease I am now saying no to scans every 3 months (as well as to radiation treatment, Tamoxifen, and Herceptin).  When my oncology surgeon recently suggested I get a mammogram & ultrasound prior to my second reconstructive surgery I opted to skip the mammogram and just get the ultrasound.  I mean, when they do find something suspicious on a mammogram they send you for an ultrasound to further confirm anyway…  So why not just skip the questionable mammogram and go straight for the ultrasound?

It wasn’t news to me that death rates from breast cancer haven’t changed in the last 20 years.  While early detection may be finding more cancer, we’re still dying at the same rate.  How can that be good?  Seems like an obvious red flag that the current approach is not working.  While many people realize this, it really sucks that the medical establishment hasn’t caught on yet.   And while I truly appreciate the efforts of researchers who continue to understand more & more about the inner-workings of cancer and how it forms and grows, I hate that what comes from their brilliant research is just more drugs and toxic treatments.

I love Orenstein for giving a shout out to us metastatic folks.  Acknowledging the paltry sums of research dollars we receive.  The terror we often strike in our non-metastatic breast cancer sisters.  Our absence from “feel-good” breast cancer events.  It is important for all those diagnosed with breast cancer to know that no one is immune from getting metastatic disease.  Denial is not going to help you live longer.  Awareness, prevention, and action will.  I know you don’t want to think about it.  But cancer can come back.

Which brings me to the point we should all be thinking about.  Why did we get cancer in the first place?  Illness is our body’s way of telling us something is not right in our lives.  When I was diagnosed with Melanoma-in-situ (basically stage 0 skin cancer) in 2008 I woke up for a few minutes, changed a few things in my diet, started to eliminate chemicals…  But never went beyond that.   Never did the deeper soul searching.  Never figured out healthy ways to deal with stress.  Never took a serious look at what wasn’t right in my life.  My body was trying to tell me something but I wasn’t ready to listen.

So now, with metastatic breast cancer I am asking the big questions…  Where did this come from?  Why is it here?  What do I need to learn?  What do I need to change?  How can I use this as an opportunity to turn my life around, love myself more, and give back to the world?

Cancer is a very complex disease.  It requires a complex treatment plan.  Simply getting a mammogram or changing once piece of the picture doesn’t guarantee healing.  I can eat 100% healthy organic food and exercise every day but if I’m not dealing with my underlying subconscious fears, childhood wounds, dysfunctional relationships, financial problems, or my stressful & unfulfilling career then true healing may not ever happen.

I’m on an endless quest to figure out what’s broken in my life and find ways to fix it or make peace with it.

The battle is multi-dimensional.  Cancer is tireless and all encompassing.  We have to be too.

Peace.  – T