Going Against The Grain

Treating myself to a glass of wine to celebrate the holidays with family & friends in Massachusetts!

Treating myself to a glass of wine to celebrate the holidays with family & friends in Massachusetts!

A big thank you to everyone who commented on my last post.

I am continually questioning my decision to go against the grain.  But the more stories I hear and encouragement I receive, the more I am committed to doing what feels right to me and not just blindly following ‘standard protocol’.

I recently started taking Herceptin again after a 3 month hiatus and the side effects are settling in…  Constant headaches.  Back pain.  Mood changes.  Hot flashes.  Exhaustion.  Cracking skin around my fingertips that renders them utterly useless and painful to the touch (there were a few days recently when I couldn’t even type).  Nose bleeds.  Dry eyes (no more contact lens wearing).  Forgetfulness and mental blocks.  And this horrible sensation of not feeling satisfied by the amount of air I inhale (otherwise known as “air hunger”).

And it’s not even these minor side effects that concern me.  Rather, it is the long term damage to my heart that really concerns me.

So now I am questioning my willingness to continue with the Herceptin.

The standard treatment for early stage HER2 positive breast cancer is 52 weeks of Herceptin (which I have almost completed).   However, those of us with metastatic disease are often told to stay on Herceptin indefinitely – Or for as long as our hearts can handle it.  But I’m not so sure that’s something I’m willing to do.

I just finished watching a disturbing documentary – Cut Poison Burn – about the war on cancer and how it’s not working.  As well as an intriguing book by Shannon Brownlee called Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer.

Both question America’s current medical system and treatment methods for common ailments such as cancer.  They ask us to consider why death rates from cancer haven’t really changed all that much.  Why more and more people are being diagnosed.  Why so many people end up dying from the treatment they receive and not the cancer itself.  They look at how the pharmaceutical companies, FDA, and politicians are caught up in an incestuous relationship that revolves around money instead of truly helping people.  Because lets be honest here, cancer is a multi-billion dollar industry.  If cancer patients get better, jobs will be lost, and a lot of companies will loose a lot of money.  It’s like the war on drugs.  We’ve been fighting the war on drugs for decades now but still don’t seem to be any closer to achieving a drug free society.  Instead, we’ve been funneling revenue to government agencies and creating a booming prison industrial complex.

It’s all about the benjamins baby.

This is another reason why I believe “alternative” non-toxic ways of treating cancer are not embraced or encouraged.  Do the doctors and pharmaceutical companies make money by me eating healthier and exercising and meditating?  Do they make money when I boost my immune system naturally?

Don’t get me wrong, I’m not saying my doctors don’t want me to get better.  I’m just saying the system is really really messed up.

In January I go for my next set of scans.  I believe they will show NED (no evidence of disease) – knock on wood…   If that is the case, then in my mind the battle becomes one of prevention rather than active treatment.  Regardless, most doctors want me to continue taking medications for the rest of my life.  However, I truly believe that if it’s all about prevention, all the actions I am taking to fortify and heal my body, mind, and spirit can work just as well as medications – without all the horrible side effects.

It all makes so much sense to me.  It feels right to me.  The difficult part is convincing everyone else that I’m not crazy for going against the grain and making such “radical” choices.  But, I’m learning to get over that.  I am listening to my gut.  I am honouring my feelings.  I am seeking information from all sources.  And ultimately, these are my decisions to make.

This is my life.  I plan on living it to the fullest.

Peace.  -T

Enjoying a beautiful day at Wegerzyn Gardens MetroPark in Dayton with Miss M.

Enjoying a beautiful day at Wegerzyn Gardens MetroPark in Dayton with Miss M.

photo 4photo 5

14 Responses

  1. Love to you, Marisa, Heron, and your whole large and lovely family. You’re faced with unknown territory — and like all pathfinders, you have to find your own way, as you are doing and will continue to do. Your formidable determination, grit, and tenacity, combined with your eminent reasonableness in those areas where reasoning and logic are useful, remind me of your mother — she, too, was and remains for me a true pathfinder and a trail blazer in her chosen art and in her life.

    • Me too, John…
      Terri, my beautiful, radical, resolute, authentic niece- I continue to be profoundly inspired by you.
      Deep gratitude, respect and love, Laurie

    • Thank you John. You always have such poetic and beautiful words to offer. (Guess that’s fitting, given your profession :-). I see and feel my mom’s presence within me and all around me on a very deep level… With all that she gave me as a mom and all that she continues to give me from ‘up above’.
      Warm hugs & smiles to you. – T

  2. I don’t believe for one moment that doctors don’t want to cure or effectively treat cancer (diabetes, heart disease, etc etc) because it would negatively affect their income. Most of the doctors I’ve actually known (many) got into medicine to help people. I do, however, notice that their initial and ongoing education is greatly impacted by pharmaceutical industry financial support of medical universities where, in fact, the drug companies are responsible for teaching classes in pharmacology.

    I used to buy used Physician’s Drug References at the hospital I worked and volunteered at, until one year I arrived too late for the sale and they were all gone. The head librarian, an RN I’d worked with for over 20 years, recommended the American Hospital Formulary Service instead. She also said that, interestedly, side effect rates reported in the PDRs, published by the pharmaceutical industry and sold at a discount to doctors and hospitals, were noticeably lower than in the Formularies, in which the statistics were supplied from inpatient side effects reported by hospital staff to the hospital pharmacies.

    Nutritional classes for medical students? One, based on data decades old and incomplete. Who would be contributing to those classes? Same for alternative medicine.

    I think the truth is that doctors just don’t get much information about or exposure to alternative medicine and natural health and nutrition, especially once they’re in a busy practice. Their patients are their main source for this aspect of medicine! Because I do research on my own, I help my primary doctor and friend of over 35 years – and she appreciates it and passes it on, often to her residency students. So help your docs! Just go to the source of your information whenever possible, for documentation – that helps ;-).

    • I love your ability to really explore all your truths, of which there may be a few, I know for me I can often see things from many angles and they all make some sense, so to choose the best thing for me is the hard thing. And then being able to settle my mind on the decision can be hard. So YES, all of what you said is so true, and much of it troubling. So I say you go girl, and do what feels the rightest (is that really a word?) to you. I love preventative approaches….

      • Amy, you described me to “T”… I do exactly the same thing… Explore every side to an argument & find validity in all sides which makes it so hard to make a decision. I guess that’s when you just have to go with your gut.
        So great to see you guys last week!!! We always have a good time at your home with the family. Hope to spend more time there in the future.
        Lots of love! – T

    • I completely agree Elizabeth. I too, believe that most doctors genuinely care about their patients. They want us to get better. And became doctors with the intent of helping people. My problem is more with the pharmaceutical companies and the medical “system” in general. I know the doctors are following protocols they believe to be helpful.
      It makes me happy to hear stories about doctors (like ours) who are willing to consider other paths to wellness and admit they don’t have all the answers. None of us do. Life is just one long learning lesson. When you think you know everything there’s a problem :-)

  3. Girl, you are right on! You do what you feel is right for you, and don’t let the “pros” tell you any different. I admire your commitment to a healthier lifestyle. Wish I could say the same for myself. Wishing you nothing but health and happiness in the new year.

  4. Terri your father’s writing had brought me much joy as I was growing up. I was saddened by your mother’s passing and to be honest, shocked, to read of your illness.

    I’ve worked in a hospital for the past 16 years, and yes doctors want to help you, but they are not gods. All choices are yours, it’s your life, your body, I see that you know that, please remember it always.

    I learned this lesson when my wife was having our first child, a big part of her wanted to have that baby at home. She ignored that feeling (knowing I’d be against it), our baby’s birth at the hospital was one mistake after another by nurses and hospital “protocols”. The worst being the nurse charged with my wife’s care not believing the baby was coming when my wife kept telling her. The nurses response was “honey you will be here for hours”. Luckily a resident happened to hear my wife screaming and checked her and delivered the baby just in time and calling a code for the NICU team.

    Our baby girl almost died, she spent two weeks in NICU due to medical errors. There were more mistakes made, but it’s too long a story to go into here.

    My wife, right then decided never again. Her next two births were in our living room in a birthing pool with two nurse midwives attending. The two most beautiful moments of my life were seeing my wife give birth to our two other daughters by candle light. Nothing else comes close.

    I know, crazy, some people will say. I would have said the same thing myself. But most births are uneventful and natural. The main issue with my wife’s first birth was a nurse who knew it all, instead of focusing on the fact that every woman is different. It turns out my wife is vey good at giving birth, her labors only last an hour or hour and a half.

    Let me say home births are not for everyone. Hospital births are needed sometimes and for most people the hospital setting reassures them. In my wife’s case it just was not going to be possible she had lost trust in what reassures most people, so a very hard decision was made knowing the risks and benefits based on my wife’s and baby’s health.

    I guess my point is, make your own decisions based on all you have learned on this journey you are on, and on who you are and what you believe deep down in your heart and soul, of course with your husband and little girl, because in the end whatever choices you make are yours to live with, not your doctors. May God bless you.

    My prayers go out to you and your family, may you live a long and joy filled life.

    • Wow! What a story! Thanks for sharing your family’s birthing experience. I too chose to have an all natural water birth at home with midwives in our apartment in the Bronx when I had Miss M. So your story does not seem so weird to me :-). Unfortunately after 30+ hours if laboring sans medicine Miss M still wouldn’t come out. So I ended up at the hospital with a bunch if interventions & drugs I never wanted but was glad to have because it helped Miss M and I stay alive and well.

      I read somewhere that the medical establishment is really good at helping with emergency & trauma situations but not so good at managing chronic conditions or uncomplicated procedures. I totally agree.

      Thanks for your story. I will continue to chart my own path and hope you & your wife do too.

      All the best, – T

Leave a Reply