As most of you may know, we are almost finished with the latest new six-episode installment of the show ‘The X-Files’. For the uninitiated, ‘The X-Files’ is about a fringe group of the FBI that is tasked with investigating alien abductions and beings as well as other unusual phenomenon. The two agents, Fox Mulder and Dana Scully, over time, believe that there is a larger government conspiracy to cover up the aliens, the abductions Continue Reading…
Archives For Psychological
The last tumor, a leiomyosarcoma, was removed from my daughter through a liver and gall bladder resection in July of 2014. I am happy to report that she is well. Something, if not multiple things are scanned every three months. When she says she’s tired, I worry. When she doesn’t feel good, I worry. I’m always worried. I am so grateful she is still here.
At the time of my daughter’s last cancer diagnosis, I was recovering from a broken leg and still had contractors working in my house repairing the extensive damage caused by a broken water line to the icemaker behind the refrigerator. I am happy to report that my leg has healed completely. The contractors are gone. Now anything that normally happens in a home – a burnt out light bulb, a faucet leaking, even a dead plant causes stress and triggers my well-worn trauma response. The record drought has not helped. But I am grateful to finally have some peace and quiet. Continue Reading…
As most of you know, my daughter had another tumor removed last July. This was her second occurrence of leiomyosarcoma. She had a liver resection. Two institutions opined that it could not be determined if it was a new primary tumor or Stage IV as the cells of leiomyosarcoma were exactly the same. She was 6 months shy of her 5-year anniversary.
As a parent, at first I was first in warrior mode, then caregiver mode and then when the dust had settled became completely distraught. I have complex PTSD and this event was a trauma trigger on the magnitude of an 8.0 earthquake collapsing the entire house. I went into the usual grieving over whether she would live or die. I had to wrestle with Can I stand by and watch my daughter die from this? Would I rather be dead? Even after all I had been through, fighting to live, living through my first husband’s death, could I do this again? I asked myself these questions and more. Continue Reading…
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…
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…
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.
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!
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.
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>
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…
“All morning they watched for the plane which they thought would be looking for them. They cursed war in general and PTs in particular. At about ten o’clock the hulk heaved a moist sigh and turned turtle.”John Hersey, writer Hiroshima
During the past few months I have been seeing various physical therapists, first for tendonitis in my wrists and arms. The pain then moved to my right shoulder where my shoulder blade is now protruding hence necessitating a new physical therapist. The quest to release this pain and get back in alignment is also augmented by seeing a myofascial release practitioner. See: http://www.mayoclinic.org/diseases-conditions/back-pain/expert-answers/myofascial-release/faq-20058136)
Trigger point massage at physical therapy is highlighting the fact that my muscles are frozen in spasms and knots not just in my right shoulder, but also throughout my entire back and along my spine. I wonder, how is it I can be in so much pain and for the most part am not even aware of it until I am touched or it becomes so bad it then enters my awareness?
The physical therapist does not think this is the result of any injury or trauma, at least on the physical level. So what is left – emotional injury, psychological injury, repressed feelings, stress trauma? This is the next quest in my journey of healing—to determine what is causing this and fix it. Continue Reading…
November is Lung Cancer Awareness Month
With the holiday of Thanksgiving being celebrated this week in the United States, I am in the spirit of being thankful. The Nation of Cancer is very thankful for life’s gift of breath. Currently, my Aunt Marion (my god mother) is dying of metastasized lung cancer at 84. The cancer has a massive presence in both of her lungs, her kidneys, lymph nodes, her liver and has eaten through several vertebra in her thoracic, lumbar and sacral spine. She has not smoked in 20 years.
So this begs the question, ‘What is the cause of her lung cancer?’
I’ve included some current facts about this difficult cancer.