Wednesday, June 19, 2013

There's More to This Story


Having been a big fan of Melissa Etheridge’s music for many years—and cheering her on in her own very public battle with cancer—I was dismayed to read today her opinion regarding Angelina Jolie’s choice to have a double mastectomy.  To recap, Ms. Jolie elected to have a double mastectomy because she tested positive for the BRCA1 gene, which according to her doctors, gave her an 87% chance of developing breast cancer and a 50% risk of developing ovarian cancer.  After having her breasts removed, her chance of developing breast cancer dropped to less than 5%.  She was commended for bravery, not only in choosing to have the surgery but in telling her story, which she told in the hopes that more women will understand the risks of having the BRCA1 gene and what it could mean for their future health.  She also wrote in her op-ed in the New York Times that she hopes the $3000 that it costs to take the test isn’t a deterrent going forward for the vast majority of women who will inevitably want to take the test and make a conscious decision about their health.

Ms. Etheridge called Ms. Jolie’s choice “a fearful choice” and also said that she thinks that cancer stems from within and is not completely determined by genetics or mutations.  (I’m paraphrasing.)  She understands why she “got cancer”—in other words, it was due to stress and poor nutrition and presumably a host of other things that she now has control over, nine years after her diagnosis.

This issue—and Angelina Jolie’s decision—isn’t without controversy and I have had spirited discussions with friends about gene testing and the decision to remove one’s breasts in the face of a positive diagnosis of BRCA1.  But as someone who has had cancer twice, I feel that I have a little more insight into the discussion.  A two-time metastatic melanoma survivor, I am hoping that one day my children can get tested and do preventative maintenance to avoid a devastating diagnosis like the two I got.  I hope that by studying me for eight long years, my doctor has come a little closer to understanding how the sun changes the DNA in some people like me and alters their genes so that their cells become cancerous and malignant later in life.  Yes, we now know to wear sunscreen or UV protectant clothing, but for some of us, the damage is already done.  We know to get yearly skin checks but sometimes it’s too late.  We need to know more, to do more.  Education and knowledge are power and I believe that by going public with her decision, Angelina Jolie contributed to helping some women take control over their lives.

It does a disservice to cancer patients and survivors to say that by being stressed or by not eating right, we are putting ourselves in harm’s way or that by just minimizing stress and being careful of what we put in our bodies, we are lessening our risk of disease.  In theory, both of these things may be true—and probably are—but they are only one piece of the puzzle.  One of the well-meaning things that people say to you when you’re diagnosed is “Have a positive attitude!” which is a lovely sentiment but when it’s four in the morning and you’re tired and nauseated and scared to death—feeling the opposite of positive—you wonder if the negative thoughts that flood your brain are also giving cancer cells the fuel they need to prosper and thrive, dampening the immune system that is supposed to be fighting them.  Isn’t trying to feel positive or stress free in face of life’s stressors, both great and small…well…stress?

We were with a group of friends a few weeks back and in that group was someone who had lost a daughter, too young, to cancer.  Another in the group complimented me on how well I looked and proclaimed that the reason I had gotten better was because I had “been so positive.”  She was sure that was the reason that I was still here, despite being given a slim chance for survival.   Does that mean that the man’s daughter wasn’t a positive thinker? Or did it just mean that she and I had different types of cancer, different health circumstances, different treatments, and ultimately, different prognoses?  I believe it’s the latter.  She died because her situation was different—not because she didn’t smile as much as I did or put on the happy face while undergoing treatment.

I believe, and this stems from being in the trenches of cancer diagnosis and treatment for four years, that getting well and staying well is a mixture of faith and science.  Faith on its own is great but science needs to support it.  Science, in the form of treatment, is wonderful if it’s the right one and you respond to it, but you need to have faith that you will triumph.  Together, treatment and your belief in a healthy you go a long way toward helping you achieve the goal of being disease free.

9 comments:

  1. Good post, Mags. Jolie's story doesn't make me think better or worse of HER, but it brings up my quarrel with our over-all health care delivery system because it can't be denied that she has the resources so many others don't for testing, treatment or preventative treatment, excellent reconstructive surgery, very attentive post-procedure care, etc. I don't blame her at all for those circumstances and if I were her I'd use every bit of high-quality care I could get my paws on! Who wouldn't? I do, however, think it's awful that so many women and men and kids would need "resources" to get the same kind and level of care. THAT bugs me.

    As to the conflicting opinions and actions of Etheridge and Jolie, I think Etheridge was wrong because even when we can use science to find commonalities that will help across a wide spectrum of patients and sufferers, even scientists recognize and are sometimes puzzled by how EVERYONE IS STILL DIFFERENT, not just physically but mentally and emotionally. This is one reason, as you well know, why so much of cancer care is headed toward treatments that are tailored to each person's individual genetics. Chemo has gone way beyond "one IV drip fits all". So have all the other aspects of treatment. So, Etheridge has every right to her feelings and plans and actions about her own health, but it was wrong for her to be so negatively judgmental about the route someone else has taken. She could have disagreed without being such a scold.

    One last thing--I've never been on the Brad Pitt team (holy cow, get a damn haircut and take a shower and shave!), but I found in the Jolie story the most offensive thing was people giving him a biscuit for being a good doggy and "staying by her side", as if that is "extraordinary" and brave of HIM! All of us who've had rough times and have faced them with loved ones who loved us know that it is EXPECTED that your partner and father of your kids would be right in the fight with you! Sure, that partner may have to be brave sometimes, but the choice to stay with who they are committed to isn't the brave part. This weird thing of "isn't he just extra-dreamy for actually staying with her even if she had to get new boobs and might get the big C one day!" is disgusting.

    ReplyDelete
  2. Vicky, I agree with everything you write above. Health care is a mess (that's a post for another time!) and I had resources to deal with my terminal diagnosis that many others will never have. That's why I'm here. It's getting to the right person and being able to afford (and then withstand) treatment and that's just not something that if available to everyone. I hope this public discussion about what Jolie went through sparks further debate and most importantly...ACTION. Maggie

    ReplyDelete
  3. Such a thoughtful and honest post, Maggie. I'm also glad that this issue is being discussed and is in the news. Can you imagine living in the days when a diagnosis of cancer wasn't just shattering, it was something that had to remain a shameful secret, too? Glad times have changed, in that sense. Now, health care is the next mess to tackle.

    ReplyDelete
  4. Deborah, thank you. I feel passionately about the whole discussion...can you tell? :-) Yes, health care needs a total makeover so that everyone has the freedom to make the decisions I made...and fight the best fight they can. Maggie

    ReplyDelete
  5. Excellent post, Maggie! I find it really teeth-gritting that so many people feel so judgmental about health issues and feel they have the right to express their judgments. I have a son who nearly died from ulcerative colitis and stays on powerful (and horrendously expensive) meds to keep it under control and not bleed to death internally. He's overweight (not hugely, but visibly) from a side effect of the meds (which have many awful and dangerous side effects) and the limited diet he's allowed, but people feel free to tell him he should eat more fresh fruits and veggies and he'd get slim and well, etc, etc. (His diet forbids most fresh fruit and vegetables because the fibers cause the ulcerative colitis to flare up and start the internal bleeding.)

    People need to consider that, every second of every day, the only thing that separates them from those dealing with cancer or other major illnesses is primarily the luck of the draw. Tiny children get these diseases. Saintly nuns get these diseases. In general, they are not issues of virtue and diet (which anymore is conflated with virtue) but of physical causes, and most of the people dealing with them are fighting a hard fight that's only made harder by self-righteous people who "know" that positive attitude or their special diet is all anyone needs to be healthy.

    End of rant.

    ReplyDelete
  6. My mother had breast cancer at the age of 29, a radical mastectomy - scars down to her elbow. At 48 she died of a fast acting leukemia. Within the past year, I have lost a 30 year old cousin, a 55 year old cousin and 3 friends to different cancers. I believe that cancer is at war with us. And we must be vigilant in our response to the attacks.

    Maggie and ladies, I believe that how we care for ourselves as well as our genetic makeup has an affect on whether we get cancer and how we recover.

    I believe that for one person to determine what is the right health care tactic for another person is not wise. Each of us have different perspectives, and that is as it should be. Even our physicians, our family members, our dearest friends can only provide their opinions, they cannot make our decisions.

    Maggie, I am proud of you, for speaking up, for being successful in your battle, and for being courageous enough to say what many of us feel. Thank You, Ma'am.

    ReplyDelete
  7. Thank you, Linda and Annette. When I was diagnosed--and my situation went to the dreaded Stage IV--people asked me if I really wanted to go into a clinical trial. Was it safe? Did the doctors know the proper dosing? Couldn't I just do "regular chemo"? What I never said at the time was that it was my only option for survival. I had to do it.

    I've learned many a valuable lesson during the last eight years and one of those lessons is to never question someone who on a particular treatment path. I have no idea what they are going through, went through, or will endure to get to better help. Better just to support and keep quiet. :-)

    I truly appreciate your support and comments on this charged topic. Maggie

    ReplyDelete
  8. Brava...to each of you who have the courage to stand up for your convictions. I love the support I see here. My prayer is that there will come a day when every one of us has the healthcare we need and we make preventive measures common practice. So that we have a choice.

    ReplyDelete
  9. Ronda, I couldn't agree more! Thank you for stopping by the Stiletto Gang. Maggie

    ReplyDelete