Don’t Discount The Hard Work

Me & Miss M at Rockefeller Center

Me & Miss M at Rockefeller Center

I know, I know…  I’ve been MIA lately.  I haven’t been writing nearly as many blog posts as I used to.

There are a number of reasons for this (none of them bad).  And most of it comes down to the fact that I’ve just been busy.  Busy with life.  Busy doing other writing (I entered a piece into the Glamour Magazine writing contest last week).  Busy traveling (another trip out east – which I’m still on).  Busy planning for the holidays.  Busy taking care of myself.  Busy having fun with Miss M.

This week Miss M and I took off for a week long journey to NY and Massachusetts.

I had three doctors appointments in NY.  Fortunately, Auntie L was gracious enough to drive down from Massachusetts to keep Miss M busy and happy while I was at the doctor.  Although I have to say, keeping Miss M happy in NYC is fairly easy task.  Just take a ride on the subway.  Of course, Miss M has her favourite lines:  the 7 train, the N & Q, and most recently the F train.  She would be in heaven just riding the trains all day long.  And we may just do that the next time we’re in town.

People often ask why I chose to have my surgeons in NYC even though I live in Ohio.  The answer is multifaceted.   Primarily, I chose NY because it is home.  Because it is familiar.  Because I am most comfortable here.  I chose the NY surgical team because they were recommended by a fellow breast cancer warrior and friend.  Honestly, I trust the NY doctors more.  They have more experience, impressive backgrounds, and amazing skills.  Plus, I have a soft spot for my team because they used to work at St. Vincent’s Hospital in the Village – where Miss M was born.

And of course I chose NY because it provides me with the perfect excuse to come back to my beloved Big Apple on a regular basis.  Being “forced” to return to NY every few weeks has been an amazing gift.  Spending time in NY gives me such a boost.  It allows me to reconnect with myself.  Brings me back to reality.  Re-energizes me.  Reminds me that there is life outside of suburban Ohio.

This week I received my usual check-in and saline injection from the plastic surgeon, as well as, my two-month follow up with the oncological surgeon who performed my mastectomy.  Both surgeons said all looks good.  I will return to NY two more times (later this month and once in January).  Then we will schedule the final surgery for April (where they remove the expander, put in my implant, and reduce & lift the other breast).

My third appointment this week was a consult with a new oncologist that a friend referred me to.  I was looking to get another opinion on what is next for me.  The oncologist is a young, charming, smartly dressed Park Avenue doctor.  One of the country’s top oncologists and one of New York’s best doctors, he is charismatic and dedicated to his patients.  He said I was a “complex” case.  He wanted more time to review my stack of medical papers before making further recommendations.  But he did seem to support the traditional stance that I should be taking meds for the rest of my life.  However, when I challenged this, by pointing out that my next set of scans will likely reveal no evidence of disease, and questioning if it is still necessary to take all these meds when there are no tumors evident, he admitted that is something to consider.

What I took away from the meeting was his recommendation that I stay on Herceptin for the rest of my life (or until my heart can’t take it anymore), and that I have my ovaries removed at some point in the near future.  He was impressed with the aggressive actions I’ve been taking thus far and encouraged me to stay on an aggressive path.

What I also took from this meeting was the feeling that I am being treated like all other stage four breast cancer patients.  Which I guess is to be expected.  Every doctor I see makes similar recommendations.  Seems to have similar expectations.  I get the sense that they don’t think I will live too long…  That they feel it is necessary to endlessly blast my body with pharmaceuticals (with minimal regard to long term side effects) assuming I won’t be around long enough to have those side effects.

This is where the difficulty lies for me.

I don’t see myself the same way.  Maybe I’m naive, or deluded with wishful thinking, but I honestly feel like I’m gonna be around for a long, long time.  And I don’t want to go through all this only to have a heart attack in 7 years as a result of some med I took.  Or die from another form of cancer or organ failure caused by the meds I am taking.

I still believe I can be the 1 percent that is cured.  The small percentage that keeps cancer at bay for the rest of my life.  And why not?  With all that I am doing, and committed to continuing, why can’t it be me?

I consistently feel like all the efforts I am making to live the healthiest life possible are not recognized by any of the doctors I see.  That anything outside of surgery or medication is discounted or ‘pooh-poohed’.

But I honestly believe that everything I am doing – from the vegan, plant based diet, to the daily exercise, vitamins & supplements, ongoing psychotherapy and mental/emotional work, removing toxins from my environment, and devotion to living my best possible life – makes a big difference.  I have flipped my life upside down and committed myself to a whole new way of living.  If my body/soul/and mind are healthy and balanced how can disease possibly take root?  I am not just doing one thing here…  One thing there…  I am doing EVERYTHING I possibly can.  And I will do this for the rest of my life if that is what I need to do to keep living.  And the beautiful thing is that the side effects of my new healthy lifestyle have me feeling and looking better than ever.  I have the energy to enjoy life.  I am more centered.  I am in a better place – despite having stage four cancer.

I am not done here on this planet, in this body, with this life.  I have so much more to give.  To teach.  To enjoy.  The doctors and their “standard treatment” options can take their death sentences and endless pharmaceuticals and shove ’em.  Do not discount my hard work!

I continue to embrace all possibilities.  And live with hope and faith rather than fear.

Love to all…  And I’ll try to start posting a little more often :-)

– T

Family dinner at Candle Cafe - one of many amazing NY vegan restaurants.

Family dinner at Candle Cafe – one of the many amazing NY vegan restaurants – with Miss M, Cousin J, and Auntie L

Times Square fun!!

Times Square fun!!

19 Responses

  1. I have no doubt that YOU will teach the doctors a thing or two about surviving stage 4 because you WILL be with us for a very long time!

  2. The pictures are wonderful — thank you for them. I keep you and Heron and Miss M. in my thoughts and prayers — and I am constantly inspired by and admiring of your truly amazing efforts in all aspects of your life, and your level head. Everything you do that makes you fitter and more energetic can’t but be steps in the right direction, of that I feel certain. And of course you are also surrounded by the love of your beautiful family and friends. Much love to all of you — John

  3. I am happy that you are doing so well. God bless you. A very close friend of mine turned me onto your blog a year ago. She had just been diagnosed with stage 4 lung cancer. She got so much inspiration from you. She even started doing some of the things you were doing like a vegan diet, supplements and even yoga. And she was doing ok until the doctors changed her chemo, one dose of the new stuff and she went from living it up to flat out yucky. It is with a heavy heart that I tell you we lost her Monday night, half an hour before her 50th birthday. I tell myself that she is in a better place, but the shelfish me wants her here. I just wanted to say a big thank you Gracefull Woman Warrior for inspiring my friend. I wish you a very long and healthy life.

    • Oh Cecelia… I know of the friend that you speak of. And I was so sad to hear that we lost her. She and I were friends on facebook (introduced to each other by Maureen) and we checked in on each other every now and then. I was hoping to see her when I was in Massachusetts last week. But I was a week too late. I had no idea that her downturn happened after the doctors changed her chemo. That really freaks me out and PISSES ME OFF!!! I know the doctors think they are helping and are only going by the usual “standard practices” but I hear stories like this way too often. It’s so sad.
      I’m glad I was able to inspire her. She was also an inspiration to me – living life fully, having fun, and finding the humour in life. She will be missed.
      Wishing all the best for you too. Take care. – T

  4. Of all of your posts so far, this one is my favorite. You’re attitude is both impressive and inspiring. You’re taking care of yourself. You’re sticking up for yourself. And it sounds like you really believe in yourself, which is the most important part! You obviously put a healthy amount trust in the people who you’re going to HAVE to trust, but at the same time you recognize that nobody knows you like you know yourself, and you’re not surrendering the reigns of your destiny at all. ^5 for being so freaking awesome. I just know you’re gonna be one of the lucky ones. <3

  5. You are just such an amazing, beautiful inspiration, dear friend. Your words have such an impact on so many of us… And by the way, love the pictures! We miss you and Miss M so much, see you when you get back to Overfield! XOXO Jennifer and Henry

  6. Great to hear from you! And I think you’re on the right track in keeping your body and your life as healthy as possible. There is a link between cancer and a trashed immune system, and chemo and radiation stress the immune system, of course. When I was a hospice volunteer, I helped a woman dying of leukemia. Our head nurse, who used to be in charge of teaching Surgical Nursing at this teaching hospital, stated unequivocally that the patient’s radiation ten years before for breast cancer had caused her leukemia.

    Cancer “cure rates” are based on a *5 year* survival rate. My previous doctor’s husband, who interned under the Mayo Clinic oncologists at St. Mary’s Hospital, then went on to teach oncology at the University of Minnesota, said his mentor told him that newer diagnostic methods had made diagnosis occur earlier in the disease’s progress, but people were still dying *at the same stage of their illness,* no matter the treatment. He claimed that in ten years, people would be asking, “Where were the police?!” That was over twentyfive years ago. Big Pharma has big bucks.

    I’m actually not anti-established medicine, and it’s true big strides have been made since then. Still, I believe your support of your body, mind and spirit are going to make a huge difference in your lifespan. It’s obviously helping already, and at the very least your quality of life is so much better, that alone is worthwhile!

    More power to you – and more joy, too :-).

    • Thanks Elizabeth. I think about this stuff all the time. What is the lesser of two evils??? Which med or treatment can I risk not taking? Is it a bigger risk to do the treatment or not to do it? Finding the middle path is increasingly difficult. But I SO appreciate all the stories that everyone is sharing – yours included. I am not anti-established medicine either. I just wish the established medicine worked better and didn’t run the risk of killing me. Sending joy back at ya! – T

  7. You are an amazing woman! Your hard work and bright spirit are awe inspiring. It was wonderful to see you and your beautiful and smart little girl. I love you!!! XOXOXO

  8. Wow. I SO get what you mean getting the sense from the doctors that it seems as though they don’t expect you to live. My husband’s oncologists are the same. They load him up with drugs with no regard for anything but the cancer…in spite of the fact that he’s had two heart attacks already and has Diabetes…at one point, after he had had about 10 CT’s in 18 months, I started jumping up and down and saying “enough!” From what I was reading if he hadn’t already had cancer, he would have gotten it from all the radiation – on top of his other treatment radiation. It was like they had lost sight of the fact that he was a PERSON, not a diagnosis. Most of his doctors tend to ignore me when I’m in the room, after all, I’m not the patient. But as a caregiver and a wife, no one…and I mean NO ONE pays closer attention to all the med-speak than me. And I’m not shy about voicing my objections to the pharmaceutical interventions that may or may not be necessary. It seems they take him to the brink of death hoping to kill the cancer cells and in so doing, almost kill him.
    You are a brave, positive soul. You may well be in the 1%…I hope so and I hope my husband is too. I think the future of cancer treatment lays more with learning to control and live with the disease as opposed to outright curing of it…much the same way as HIV/Aids has progressed, no longer being a certain death sentence. There is no doubt in my mind that a positive attitude and a healthy lifestyle are key to longevity and quality of life. There is a lot to be said for being the captain of your own ship…the doctors are only part of the crew – essential but not the total answer. I applaud you and wish you the very best.

    • Treating cancer is insane. I can only imagine what your husband is going through… But I’m so happy to hear that you are not afraid to voice your objections and opinions. It makes a difference. I couldn’t agree more with your belief that successful treatment lies in turning this terminal illness into a chronic disease. I often think of how far they’ve come with HIV/AIDS and wonder why they haven’t had such success with cancer yet. I swear, the whole medical establishment has gotten way off course when treating cancer. We need to flip everything on its head and figure out some new ways of doing things.
      I so appreciate you sharing your experiences. I think about you and your husband and often. Stay strong! I’m rooting for ya! Big hugs, – T

  9. Lovely, positive post. My Dad was recently diagnosed with lymphoma, after scans & fluid taken of the lump. Or rather they told him it was 99% certain lymphoma and a biopsy was needed to confirm the type. However, after the biopsy he was one of the 1% gang and turns out he is fine

  10. You know YOU best. Not “them.”
    Do what YOU think is best for YOU.
    Then you’ll surely live a LONG TIME.
    And then, enjoy it all,.

  11. Just read your latest entry. In one small way I kind of envy you–getting back to NYC, where I grew up (south Brooklyn). But I know it might be kind of a mixed feeling for you, for the obvious reasons. On another level, you reminded me of something my dad told me more than once, with your reaction to the doctors’ attitude about the meds–“You gotta do what you gotta do.” You’re making an informed decision, or series of them, on how you want to handle all this. That means you’re doing what you feel is right, after thinking it over with some care. And that’s what counts, especially since you’re not hurting anyone doing it.

    I wasn’t sure I should mention earlier, but I was also thinking about two of my cousins, whom I lost to cancer years ago (one lung, one pancreatic), both of whom smoked like chimneys. (And why I always try to get friends off smoking.) That’s part of why the wife and I cheer for you so hard–I know we’re not close friends or anything like that, but every time you take another step, I remember Hawkeye Pierce’s line from M*A*S*H–“Don’t let the bastard win.”

    Give him hell, Terri. :-)

  12. My biotechdaily online research news is full of new breakthroughs in understanding cancers’ mechanisms and treatment options, and I’ve seen researchers’ references to the cutting edge goal of making cancer a chronic, manageable illness. I know this stuff isn’t mainstream yet, BUT: options are being developed much faster than they used to be. There IS real hope out there.

    Furthermore, those “1%” longterm survivors? They were once exactly where you are, in their own journeys… And that’s history. YOU are the future!

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