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I love going to the movies. It is the only place where I feel completely unplugged and immersed in someone else’s story, especially if it is a good movie. This year I have started ‘Wednesday is Movie Night’ and I go with a very good friend each and every week.

Even before the 2015 Academy Awards where Julianne Moore won best actress, I was interested in seeing “Still Alice”. My movie partner wasn’t as interested but went this week with me to see Moore’s Oscar winning performance. Continue Reading…

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As you are aware the end of the year and the holiday season may be a difficult time for The Nation of Cancer. It is a time of reflection; a time to look at where one is in their life. It is also a time that may exacerbate the loss felt if a loved one has died or is very sick. It can also be a time of sadness if you, yourself are dealing with your own illness. I know that there have been many years this has been true in my life and this year has been no exception.

As I have been writing out holiday cards, I have been struck by how difficult this year has been but also struck by the gratitude I feel for what I do have. For one thing, I feel very grateful that I was able to accompany Jean Shinoda Bolen on a trip to Ireland a few years ago. I am also grateful that she graciously endorsed my book.

I have read most of her books and have always learned so much from her. Her latest book: Artemis: The Indomitable Spirit in Everywomen is a prime example of her writing, another wonderful book full of stories of mythology and how they still apply to each of us. This book has helped in better understanding my nature, further identifying mythological archetypes and contributed to continuing my journey of knowledge of who I am and what I can be.

I am including an e-mail that I received from her that I think is something to ponder as we continue on our path of healing. As suggested, I am passing along the gift of Jean Shinoda Bolen.

December 11, 2014

“Still Here” is a short essay that I read in one of my workshops at Esalen and said that I would send it to them. Intuition after hearing from others about people they have lost:  send it out to all. Continue Reading…

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As many of you know I have a genetic defect called Li-Fraumeni Syndrome.

Per ‘’Medscape” Li-Fraumeni syndrome (LFS) is a rare autosomal dominant syndrome in which patients are predisposed to cancer. Li-Fraumeni syndrome is characterized by the wide variety of cancer types seen in affected individuals, a young age at onset of malignancies, and the potential for multiple primary sites of cancer during the lifetime of affected individuals.

(see http://emedicine.medscape.com/article/987356-overview)

This past year a group of friends that also are affected by LFS started a non-profit called LivingLFS.org. All of us ‘met’ in a ‘closed’ Facebook support group and then in person last year. It Continue Reading…

IMG_1185As you may or may not be aware, I have not been ‘out’ much lately. I am trying to come to grips with the latest cancer ordeal in our family. I’ve been digging in the dirt, watching mindless television, reading and shockingly – cleaning my house.

I have been saying that I am grieving. Grieving what? Am I grieving a dream, a vision of the future, an expectation? I realized that I’m not really grieving although it can feel pretty bad. Continue Reading…

Leiomyosarcoma

The wave is coming!

There has been so much going on since my last blog post necessitating my absence. In July, from a biopsy, my daughter was diagnosed with a leiomyosarcoma in her liver. This required finding a liver surgeon to determine if this was operable, while all of her and my usual doctors were on extended vacations. We knew the wave was coming and were trying to strategize how to get to the highest ground to be able to survive the hit. Continue Reading…

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On July 5th while my husband and I were visiting New York City we decided to go downtown to Ground Zero and see the new ‘Freedom Tower’, the ‘Memorial’ fountains and the 9/11 museum. It was a pure coincidence that we were the there the day after Independence Day and not one that the Freedom Tower was designed to be 1,776 feet tall. That day was also the day after the anniversary of the death of John Adams and Thomas Jefferson, both signers of the Declaration of Independence.

My husband and I met while working at One World Trade Center and here we were almost 27 years later peering into the fountains contained within the footprints of One World Trade and Two World Trade. I stood mesmerized as the water cascaded over granite walls and fell into infinity. Etched into the perimeter of each fountain were the names of those who died in the terrorist attacks of 9/11 and 1993. The fountain memorial was very profound and moving. For me it was symbolic of the collapse of the buildings and the vacuous plunge to a state of death and then infinity. It also reminded me of the initial and long-lasting hole left in the heart after the death of a loved one. Yet even still I mused that water was symbolic of life. I also noticed that the fountains were surrounded by rows of mighty oak trees outlining the outside footprint of the missing buildings. Continue Reading…

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An issue or an unmet need has come to my attention due to some recent personal experiences. For the purposes of Cancer, The Nation of Cancer, and the treatment of cancer there should be a new age group.

Now

Currently we basically have three cancer groups: Childhood Cancer, Young Adult Cancer and Adult Cancer.

The group Childhood Cancer includes babies up through adolescence, or age18. One can say with complete certainly that the needs of children and adolescents are unique to their group demographic. They are still physically growing; their brains are not fully developed. They are not legally responsible for their decisions. While they may be consulted, others, usually parents or other adults will decide what is to be done regarding treatment and care. And by equal measure the responsible adult will shoulder the financial responsibilities. Among other things, this group requires different doctors, drug dosages, social workers, case managers, and different support in general. Their training is even age specific. One could argue however, that this age group should be broken into a narrower age range.

The next group is the Young Adult group of cancer patients. These are people in their late teens up to what? 30? 35? The needs of this demographic are unique as well. Some of these patients are in pursuit of their education, starting careers or businesses, dating, forming relationships, and starting families. This group is starting out on the adult journey of their lives. Then cancer hits, the journey is suspended. Changes in body image, trust in one’s body, fertility, desirability, loss of time, wages, starting over again, are all issues. ‘Stupid Cancer’, ‘First Descents’ and other groups support some of their needs but not all needs are being met. There are financial issues, insurance issues. The issues of autonomy vs. dependence are huge.

The demographic of the Adult Cancer patient begins where Young Adult ends until the developmental stage of old age and herein lies the problem: We are missing the stage between the group Young Adult and the older age adult!

Personal Experience

In my personal experience, at 36 years old and even more than a decade later, I did not have much in common with many people in my ‘Adult’ cancer cohort. Most people in the chemotherapy treatment rooms, oncology floors in the hospital and in the support groups were people much older, patients in their sixties and beyond. Other than having cancer, I really didn’t have much in common with most of them and where they were in their lives. I was their daughter’s age, my children, their grandchildren’s age and so on.

I was a Young Adult cancer patient if you stretched the age group to 36 when cancer first hit.  I was working full-time, was already having some career success, and was the mother of a toddler and a preteen. I was very involved my children’s schools and activities. I was married, had a mortgage, my salary was depended upon. In reality, I was too old to be a young adult. My parents were becoming elderly. I was too young to get cancer.

Proposal

I propose a completely new group:

THE PRIME OF LIFE CANCER GROUP

This is the group of adult cancer patients say between 30 or so and 45 or 55. These patients are old enough and experienced enough to know who they are. They may own homes, be married or in other committed relationships. They may have children. They may be caring for these children as infants, or while the children are in school, or possibly starting college. They are well on the way up the ladder of their career. They have responsibilities. They have very busy lives.

This was the age when I had five different cancers, was juggling a job, chemo, working and raising kids. This group is not getting enough support. For example for many, too many decisions need to be made: medical leave vs. career, childcare issues during treatment, after school activities. How does one manage it all? What about cancer’s effect on sex and sexuality? What about dealing with cancer’s effect on the children? What about cancer’s effect on the non-effected spouse or partner? This is a funny term since they are absolutely affected. (affect/effect, who cares, on a roll here) What about their career? Dreams? Who picks up the slack and shepherds the family through the crisis? What kind of unique financial needs does this group have? I would say most certainly as a group they are unique unto themselves vs. the needs of a 22 or a 55 year old. What do you think?

The cancer patient in The Prime of Life Cancer Group currently is falling through the cracks and is held up by friends, family and community support. The problem is the friend group is also in their prime of life and they are busy too. Family and the community can help but it is not structured by any means. So as the cancer patient you may be reduced back to your younger days of the Young Adult group or the Older Adult patient group, not really able to relate to either.

Please share your experience if you find any of this true. Please share if you know of services directly and specifically helping the cancer community in The Prime of Life Cancer Group. If you can think of more issues please share and I will post on the blog. (Since not everyone is on Facebook, I prefer comments on the blog). Please share this if you think there is a HUGE GAP in cancer care and support for people in The Prime of Life Cancer Group! Unfortunately, I know too many people with cancer in this age group.

 

Is there a better name? What other groups of cancer patients do you think have unique demographic needs that are not being adequately addressed? Do you think cancer demographics should be more finely stratified to appropriately, successfully and inclusively address the needs of all ages?

 

Photo credit: Copyright: <a href=’http://www.123rf.com/profile_Tawng’>Tawng / 123RF Stock Photo</a>

 

 

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A few weeks ago I had the opportunity to be interviewed at a recording studio by a wonderful talk show host, Jim Foster. He has been the host of a weekly radio author interview program called “Conversations on the Coast” for many years. The studio was in the main office of Clear Channel Communications and iHeart Radio. My friend drove me to San Francisco for the appointed time since I was still on crutches and in a leg stabilizer, not yet able to walk.

Jim Foster was a very gracious gentleman and, it seemed, had read the whole book. In the interview he focused on my ability to overcome adversity and my resilience. I honestly felt a sense of pride at my accomplishment in living the life of ‘A Kick-Ass Fairy’. But after I left I felt a bit uneasy and didn’t know why. Continue Reading…

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It has been a few weeks since I wrote anything!

The Accident

My husband and I took a much-needed vacation for ten days in Hawaii. It was at least 7 days until we both could unwind enough to get into the ‘hang loose’ groove.

Then on day 7, my husband slipped on some wet tiles in the lobby of our hotel and hit his head on a large tree pot and saw stars. I had food poisoning that night. The next day was beautiful weather and slathered in sunscreen under an umbrella, we sat on chaise lounges on the beach enjoying the surf. Continue Reading…

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On April 14, 2014, I was very excited when I heard the news that Toms River: A Story of Science and Salvation by Dan Fagin won the 2014 Pulitzer Prize for general nonfiction. That day, I tweeted to congratulate Mr. Fagin and I was excited when he tweeted his reply ‘Thanks’. I tweeted to my followers that this was another win for The Nation of Cancer. The Emperor of All Maladies: A Biography of Cancer by Dr. Siddhartha Mukherjee had just won the same award in 2012! Continue Reading…