Continuing The Conversation About ‘Outside In’ And Stories of Illness

CommonHealth's first meetup, a screening of "Outside In" and panel

We’re happy to report that our first CommonHealth meetup last night, featuring a screening of the provocative film “Outside In” about one woman’s extraordinary journey through ovarian cancer treatment, was a rip-roaring success. The WBUR conference room was packed, the audience’s questions were thoughtful and the panel discussion was heartfelt and robust.

But as folks filtered out of the room, many approached us with more questions. So we’re hoping to keep the conversation going here. You keep asking or commenting below, and we’ll also seek responses from our panelists: the film’s star, Dr. Kasia Clark; its director, Kat Tatlock; Jonathan Adler, a psychologist and assistant professor at Olin College of Engineering; and Marie Colantoni Pechet, a CommonHealth contributor who writes about managing her stage IV colorectal cancer.

Some initial questions:

Money

Both Kasia and Marie talked about some of the travel they’ve done as ways to feel less like patients, more like normal people and as a means to “live in the moment” with friends and family. These trips include visits to waterfalls in Costa Rica, ski slopes in Utah, and contemplation of jaunts to Italy and Thailand. Clearly, the adventures cost money. One audience member wondered: What about all the regular people facing cancer with far less disposable income?

‘Fighting’

When an audience member suggested that Marie was surviving cancer because she had “such a will to live” and was “such a fighter,” that was offensive to at least one other audience member, and probably others who have lost loved ones to cancer. The implication, it seemed, was that others don’t have a strong enough will to live or didn’t fight hard enough. The whole “fight” metaphor is controversial among people with cancer. Could Kasia and Marie please respond?

What worked?

Kasia and Marie talked a little bit about the alternative therapies they tried, but didn’t actually say outright which of their many treatments they think have been most effective. Could they comment?

If you attended, we welcome all other feedback on the evening. This was a first-time experiment for us and we’d be deeply grateful for any suggestions for next time. Please post in the comments below or click on “Get in touch” at the bottom of the page. And thank you for coming!

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  • Bevevans

    I am wondering if Kasia knows about the MD in this area who is doing I think lazar or massage on the vocal cords to get them back to normal function. I saw a program on one of the stations within the last month —Ch.4, 25 or 5 I usually watch so thought she could check them out–it is very none invasive and appeared to be a short simple procedure.

  • Marie

    What worked:

    When I wanted to have a baby, I would look at pregnant women and women pushing young babies in carriages, and I wanted to ask them, “What worked?” I tried everything popular at the time: acupuncture, only organic seasonal foods, meditation, yoga, special teas, etc. 

    When I got pregnant, I had no idea what worked. 

    This feels very much the same to me.That said, I still try everything that comes my way. Here is a sampling:
    reiki, yoga, energy medicine, raw foods diet, macrobiotic diet, juicing, wheatgrass, Chinese teas, supplements, exercise (though, I am not as regular with this as I should be), mediation, prayer, cancer patient workshops, reading websites like How Chis Beat Cancer, removing every potential stress from my life….

    The list continues. Because I cannot do everything, I try to do what feels good and right to me.

    Before I dive into my list, I will say that I also do chemotherapy. I took a chemo holiday last year and the tumors grew, so I don’t have the secret for how to do this without using chemo.

    That said, here is what I do….

    My current list includes yoga (with a specific teacher), energy medicine (because I have seen results from this), juicing when my stomach can handle it, a vegan diet that does not include wheat or sugar. Believe me, cutting out all sugars (including honey, agave nectar, etc is difficult!). Acupuncture. Spending time with friends I love. And therapy. By the way, therapy does not need to be expensive to be good. I was quite impressed with the palliative care doctor I see!  I started Tong Ren, and those classes are also free. I do regular meditation and pray all day long, but especially in the evening.

    I knew the raw foods diet was making a difference in my body when I returned from a one-week immersion class at Hippocrates Health in Florida (originally started by Ann Wigmore) and the doctors commented on how amazing my blood numbers were, better than every. And they had no idea of the changes I made.

    Those are the kinds of things I look for. One acupuncturist helped me immensely with my nausea. She is on maternity leave; my current on focuses on my energy levels. That works for me.

    My yoga teacher makes me laugh, and my body feels so much better afterwards. He helps me to modify the poses based on how I feel that day, too.

    There is nothing that feeds my soul more than connecting with others, especially friends. I love to hear their stories and to build new ones together!

    Given up sugar was like giving up crack cocaine, but I did it! I no longer get hot flashes, and I feel so much better. I gave up caffeine ages ago, but would recommend dropping that, as well as anything artificial from your diet.

    It helps to talk with someone who understands this crazy cancer world, like the palliative care doctor or a therapist.

    The meditation helps me to visualize my body and work on any aches, pains or flow.

    The strongest, I have to say, is prayer. I have seen more direct results from prayer than from anything else I have done. I could write a whole book on just the impact of prayer and miracles along the way. 

     

  • Marie

    Fighting:

    First, full disclosure: The woman who asked the question is a friend of mine, and we started our cancer treatments at the same time. She knows me well, and I think that maybe her word choice wasn’t ideal – that she was just trying to form a question in front of a large group of people. As she said, she is also dealing with stage IV cancer, and I saw her at the infusion center today. She knows that I don’t think of myself as a fighter or with an exceptionally strong will to live. To the contrary, there have been points when I thought dying would be easier.

    I don’t think of cancer as a fight. Intellectually, I can think that it doesn’t belong in my body, but emotionally, my mental pictures are more along the lines of my good cells escorting my bad cells our of my body.

    I recently read an obituary of someone I knew who died of cancer. It said, “He ran a good race, and while he may not have won, he made it to the finish line.” I loved that. 

    So, I don’t apply the “will to live” and the “fighter” or war analogies. Maybe I should.

    I know five people, just off the top of my head, who had my same cancer. None of us had the risk factors currently known, suggesting there is much unknown about the cause. We are all younger than the average patient, non-smokers, healthy eaters, with little to no family history of the disease.

    All of us, I believe, are vibrant people, some are very spiritual and religious. 

    All of us have gone through incredibly dark periods where we felt there was no way out. Eventually each of us found our way, and we all were and are finding joy in each day.  

    I don’t like the idea of judgment in the cancer world. Some people get it, some don’t, and we all do the best we can with the cards we are dealt. 

    I hope that helps.

  • Marie

    Money:

    I’ve thought about this often, especially because, no matter what your income level, you have to pick and choose what you decide to do. In fact, we realized that we were repeating a pattern: I get a dire diagnosis, and then we spend money like drunken sailors on leave. When that wears off, we take a look around and go, “Whoa – what have we done?” and scramble to repair the damage. We also learned to recognize when a action is based on desperation, as in, “We should get a swimming pool NOW.” vs something that I have just always wanted to do, and shouldn’t put off longer. The ski trips are like that: We want the boys to learn to ski, they are at a good age, and we can’t “wait” till I get well to do this. We have to do the best we can now. That didn’t feel desperate. It just felt right, like moving on with our lives and what we want while managing a chronic illness.Now, when we come up with ideas for things to do, we wait a bit before we act on them, see how they feel, and how they fit in with our finances and our family and personal goals.All that said, there are countless things that I now do regularly that give me joy, and they don’t cost much money if any at all. I probably should have mentioned these, so I appreciate your follow-up question. For example, last Friday, I attended my yoga class. After class, I walked to my car and drove to met a good friend at my house for a visit. In church that following Sunday, a friend pulled me aside and said that she was driving down the street and saw someone radiating happiness. So looked more closely and noticed that it was ME!That made me feel good, and it is an example of how you can feed your soul and spirit with activities that do not break the bank or take you far from home. Other activities that give me joy include cooking meals for my family, reading a good book, connecting with a friend, being open to whatever miracle might appear that day. I love to write, and try to get that in almost every day.I try to view the times with my children as blessed moments, and we have alot of mundane moments in every day – serving and cleaning up meals, doing homework, etc. Those are just as much opportunities for growth as travel can be.When I look outside myself and connect with others, I feel less like a patient. I saw that in Kasia’s film as well. And when I pray, I feel like my life is in a larger context and it makes me more humble. That carries me through.None of these are outside the realm of what most people can do, and I am sure there are other things that feed their souls without breaking the bank.

  • Catharine David

    How can I find out more about Jonathan’s work regarding people’s stories and how we tell our own tales?

  • Jonathan Adler

    Jonathan:  I thought I’d weigh in on the “fighting” metaphor since it so directly relates to the science of narrative, even though the question was directed at Kasia and Marie.  As I discussed last night, one of the key themes in people’s stories that we’ve found to relate to mental health is this theme we call “agency,” or people’s sense that they are in the driver’s seat of their lives.  It seems to me that casting oneself as a “fighter” is one way to bring agency to the situation, and indeed in an early qualitative study I did we found that people who were doing well, psychologically, often told the story of their struggle as a battle with a formidable villain (the problem – not cancer in this study) that they ultimately vanquished.  But I certainly don’t think this metaphor is the only way to find a sense of agency.  And, as I also mentioned last night, there is a point when narrative and reality bump up against each other and in the case of cancer, sometimes the reality is about “losing the fight.”  I actually think there are also ways of shifting into this phase of the experience with a greater and lesser degree of agency (“mindfully accepting” versus “giving in,” for example).  So the fight metaphor does seem to intrinsically pull for agency, but it’s not the only way to do it.

  • Anonymous

    Kasia: with regards to the money question…I have been in an unusual position financially, as a consequence of winning a malpractice lawsuit; and now, by virtue of having a great disability policy in my last job as a physician.  Also, I have never been without health insurance.  This enabled me to pay for the production of a feature film, travel, purchase of a fine violin, and many other things.  For other people, without this advantage, I can imagine that the financial pressures of dealing with chronic cancer could be daunting, especially without continual access to health insurance.  On the other hand, many people find their deepest satisfaction comes from other aspects of life, which are less costly: such as going to church or going into nature close by (Walden Pond for example), and especially friendship, spouse, children.  These more spiritual and affiliative activities, together with my continuing passion for music performance (it does not cost anything to take the violin out of the case), are becoming much more important to me now, late in the game…

    “Fighting” and being a “survivor” are kind of shopworn terms…However, I do feel that, in my case, discipline (especially around diet and exercise) is required to enable me to dig out of the holes that illness thrusts me into.  For example, I am just out of the hospital after a 16 day stay over Christmas and New Year, for a partial bowel obstruction.  I have been steadily working my way back into a state of fitness, after loosing most of my muscle mass and barely being able to walk up stairs.  This means eating enough protein as well as going to the health club every day and using machines and the swimming pool; walking most days, etc. etc.  I have a history as an athlete, so I know how to do this, and have done it many times over the 11 year course of my illness.  But I think it has made a difference in my longitivity.  See my Facebook page at “Outside In” for more details on the current rehabilitation process.  I understand that not everyone has the energy to respond in this way to their condition; and I have no proof that it is essential, though new research is out now about a hormone called “irisin” that is released during exercise which modulates human physiology to improve health.

    In addition, I sometimes feel that I do have to “fight” to counteract the mental health impact of living with chronic disease/cancer.  The mental health consequences include feelings of anxiety, depression and isolation.  At times, an aggressive approach works best in counteracting these phenomena; to essentially contradict these emotions via vigorous efforts of various kinds…as shown in the film.  Is this the same as “fighting”?  This is a matter of terminology.  The alternative for me and perhaps some other people, is to withdraw from the world and give up.  Once one gives up, I think the body declines more rapidly.  

    Regarding alternative/complementary therapies, most beneficial for me have been: balanced diet attuned to the condition and function of my digestive tract, exercise, massage (I think getting whole body touch is very comforting and reassuring to an ailing body), psychotherapy of various kinds (both traditional and more emotive varieties like process psychotherapy or bioenergetics), surrounding myself with loving people, being in nature, and playing or listening to music.  I have done colon hydrotherapy, acupuncture, juicing and juice fasting but am not convinced that these made a difference.  I have also looked into Ann Wigmore/Optimum Health Institute, but was not convinced enough to actually attend these retreats.