Archives For The Caregiver

img_7830This past Sunday one of our dogs, Kenyon, appeared to be fine. On Monday he was throwing up mucus and pieces of grass. This type of throwing up is not unusual for either of our dogs. They eat grass when they are having digestive problems, like constipation. His vomiting continued intermittently throughout the day. I went to dance practice Monday night. On Tuesday morning my husband left me a note telling me that Kenyon hadn’t eaten Monday night nor Tuesday morning. He informed me that the dog had ingested part of 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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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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During the past few months, I have been the main support person for my very good friend. Our journey began when her doctor wanted her to get a colonoscopy due to a steady decline in her red blood cell counts. I was there functioning as her ears after the procedure when the GI doctor described the ‘mass’/’lesion’ in her sigmoid colon. I was with her when she received the surprising news that the pathology came back with no cancer cells evident. I was with her when she was told that she needed surgery anyway due to an imminent occlusion of her bowel and continued risk of finding cancer beyond the biopsy. Continue Reading…