Saturday, February 26, 2011

What Would I Say?

A dear friend just contacted me to ask if I would talk with a dear friend of her friend about her recent Stage 1 breast cancer diagnosis.   Of course I said yes.  And then I thought, What do I say?

My own first diagnosis was almost 14 years ago.  I did a LOT of research-- and this was pre-internet, y'all!  (Thankfully, I was not alone in this quest and I acknowledge Amy Zenger, first among others, for her efforts on my behalf.)  I amassed a small library of books about breast cancer from various points of view which I have loaned out to people over the years.  But the last time I lent them, I was aware that this information could hardly be considered current.  Breast cancer is a hot topic for research and surely things have changed since I started digging around.

Well, at least I hope so.

One of the not-so-well-publicized facts I discovered back in 1997 was that the number of women who die from breast cancer  each year had not changed much in the past 50 years or so. There were more women diagnosed with breast cancer and more "survivors," but mortality rate, the percentage of women who die from the disease-- even with all our medical advances-- remained about the same.  

Why do some people go through the whole AMA-approved medical tamale-- surgery, chemotherapy, radiation and hormone treatment--  and emerge scott-free, or at least never threatened with breast cancer again, while others have it return again and again?  Maybe it is the nature or tendency of some breast cancer (and it would seem, unfortunately, particularly the kinds that strike women under the age of 40),  to be more virulent, more aggressive, more resilient then others.  It is possible that the less-aggressive, slower-growing breast cancers --which appear more responsive to standard treatment -- might never have been aggressive enough to cause the death of the body they occupy.  At least not before some other disease, accident or mishap beats them to it.

The course of each and every cancer is unique--  as is the life and body of each person who has cancer.  We can make generalizations about how each of these unique entities is likely to behave, but those are educated guesses, not pre-ordined truths.  These educated guesses-- backed up with rigorous and expensive research and trials--  are what treatments are based on.  I won't veer here into how skewed I think our present system is in terms of what kind of research gets funded, and what happens if you follow the money, just a gentle reminder that the whole edifice is built on and then supports a particular view of reality.

Each of us produces cancer cells that our immune system routinely sloughs off as part of its day-to-day job.  Cancer cells, I assume you know, are by definition rogue cells:  rather then doing the job they were created for in the body, they party down on your vital resources (blood, protein, etc), reproduce like proverbially bunnies and refuse to die.   Yes, ladies and gentlemen, this disease that threatens to kill you is caused by your own cells' refusal to die.  Now that's ironic, no?

All this I discovered 14 years ago.  (I still find it arresting that the disease that strikes such a huge bolt of fear of death into modern Americans is a disease whose very malfunction is a refusal to die.  So much so that I am willing to state it twice nearly in a row.)

So.  What would I say to someone now?

1)  The single most important thing that I discovered survivors of all kinds of terminal diseases had in common is that they acted in accordance with their beliefs-- whether they prayed and took beet juice or left everything in the hands of a medical professional they trusted.  If you do not know what your beliefs are, there will never be a better opportunity to find out.

2)  Find some allies.  Reach out to your loved ones, or find comfort in strangers united by this one common thread.  Do whatever feels right to you, but do what you can to not isolate yourself.  The disease will do plenty of that on its own, you don't need to help it.

3) Put together your team.  Do not let anyone, including those wearing white coats, bully you.  This is your body, your life, and your decisions to make.  As exhausting and overwhelming as it can be (get some allies from above to go with you), keep going to doctors until you find one who feels like a good fit.  He and/or she is out there and you deserve no less.  And don't stop there.  Some of the most important members of my team(s) over the years have been naturopaths, Traditional Chinese Medicine doctors, acupuncturists, Tai chi, Qi Gong, Buddhist and yoga teachers, friends and family who volunteered to be my designated healthcare advocates, handle my insurance/medical billing issues, clean my house, walk my dog, make me food, arrange for flowers to show up at my door step on chemo days, and keep me company even when I consistently fell asleep while watching Netflix.

4)  Life is precious.  Life is ephemeral.  If you are alive right now, there is so much more going right in your body than going wrong.  And you are in the perfect place to recognize that there is so much more to you than your body.  None of us knows what tomorrow will bring-- certainty is an illusion.  You are just in a position to see that better than most people.  Everything that lives will die.  Death is not failure and death is not the enemy. Live and Love and Be Here Now.

5)  Some good sources of information online: (hate-the-name-love-the-service-- Y-Me's In Your Shoes Program can hook you up with a trained peer counselor who has been thru exactly what you are facing),  Dr Susan Love's Foundation, there are others, but you will find links to them on these pages.

I wish you well, and it goes without saying that all this is only my opinion, and I am not a doctor, merely a fellow being who has been there and has a story to share.

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