Living a Whac-A-Mole Life – repost

I had my article published at Skincancer.net here:

https://skincancer.net/stories/scalp-treatment/

I”ve added a little more to it and the editors created the headings.  Skincancer.net is a wonderful support network.

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Living a Whac-A-Mole Life

The conversation with my dermatologist when he called me after I had sent him photos of yet more growths on my scalp went like this:

Doc: “It looks like we will have to take another biopsy.”

Me: “Well you know it’s like “Whac-A-Mole”.

Doc: (Big laugh) “I’m sorry I”ll have to carve up your scalp again.”

It’s like Whac-A-Mole

The biopsies were performed and the diagnosis was squamous cell carcinoma – A-GAIN. This is the 4th and 5th diagnosis since January 2019 (It is July 2019).

Scalp like a war zone

Today I just had them removed. My scalp literally looks like a war zone. Due to the rapid appearances of SCCs and AKs I will now be undergoing a 3-week treatment of Efudex in late September. In addition to the discussion with my doctor about Efudex I have conducted a lot of research on my own and sought stories and advice from those who have gone through this treatment.

Whac-A-Mole life is draining

It is like living in the arcade game Whac-A-Mole. After each procedure I have had to get rid of skin cancer cells, more growths pop up. My scalp is one big field of SCCs and AKs. Staying on top of this Whac-A-Mole life is draining and frustrating, but vigilance is necessary to ensure that treatment is immediate when necessary.

Tar Sands Resistance: Utah’s 7th Inter-generational Gathering

Each year humans of all ages gather on the Tavaputs Plateau at P.R. Springs Campground to behold the beauty of the mountains and life in them, as well as reflect on the impact of the destruction of the tar sands mine.

The mine operation can be seen from the camp – a stark reminder of the devastation that has occurred as a results only one thing:  Greed.

Although it has been nearly two years since there was any mining activity, it’s only a matter of time before it resumes….

 

…unless we stop it.

One only has to see the life that exists on this land to know that what is happening in the name of profit is just wrong.

Despite the unseasonable cold temperatures and eratic weather pattern (snow, hail, rain, bitter cold), a total of 18 participants hiked to various spots, including a tar sands seep, and the area of the springs known as Triangle Springs were we planted what is believed to be native plant species – Sweetgrass, Hops and Tobacco.

 

 

 

 

 

 

 

The next photos portray the abundant and various life forms that survive on the Plateau – and some of the humans who are protecting the land through a protest vigil.

“We only have One Water, One Air, One Mother Earth.”

Corbin Harney, Western Shoshone Spiritual  Leader, 1920-2007

What it feels like to live Whac-A-Mole

“It looks like we will have to take another biopsy.”

“Well you know it’s like “Whac-A-Mole”.

(Big laugh) “I’m sorry I”ll have to carve up your scalp again.”

This is the conversation with my doctor when he called me the other day after I had sent him photos of yet more growths on my scalp.

It is like Whac-A-Mole. After each surgery I”ve had to get rid of skin cancer cells, more growths pop up. This time I have detected four more new growths.

This will be three biopsies in 7 months (the first two positive for skin cancer resulting in other procedures). I  now have added Reishi extract  to my daily regime of vitamins and supplements.

 

 

Skin Cancer is Serious: Vigilance is Key

As Skin Cancer Awareness month is in its last week, it is far from stopping the stories. My story continues. The two “bullet hole”-like areas on my scalp where I had Squamous Cell Carcinoma removed are healing well. They still look like bullet holes, but will slowly fade. The SCC area on my forehead removed in November is barely noticeable. The bad news is that there are several more growths that have appeared on my scalp and are growing. I have an appointment on July 2. More to come.

Here is a story of a woman’s skin cancer experience with SCC, the type I am diagnosed with, as well as Basal Cell Carcinoma. “After my diagnosis, the strangest coincidence happened. I took a cab home, and the driver shared that his mother had died from squamous cell carcinoma. He was devastated. I felt like I’d been punched in the gut. Really, I thought, people die from this? Yes, while the statistics on nonmelanoma skin cancers are estimates, as many as 15,000 people in the U.S. die from advanced SCC every year.”

Skin cancer is serious. It can kill. I will remain vigilant. I hope others take my advice and do the same.

A Hole in My Head

 

Pets: Forever Enriching Our Lives

 

This week we helped the most beloved member of our household move on to her next life. She epitomized the word “cuddle” and was always full of kisses. She traveled to the desert and mountains with us and clear across the country to visit our family. For the entire 13 years of her life, she never complained and always showed nothing but love. There was not a mean cell in her soul. There is a void now in our family household, but she is at peace now. Dearest sweet June, faithful companion, never complaining, full of love and vigor for 13 years until blindness, deafness and arthritis took hold over the last year and in the past few days she just wore out. Up to the very end she was loving, even in her weakened state. Our lives are so enriched by her presence. Her passing was peaceful. I could just envision our pets that had passed on before June, all who had lived with June – Star, Sokrateez and Simba –  waiting for June as she passed into their realm, tails wagging. 

Thank you our lovely June for everything you were and are to us over these years.

June Carter-Cash Pope
April 17, 2006 – May 23, 2019

May is Skin Cancer Awareness Month: For some, it’s awareness every day

This  month is Skin Cancer Awareness month; a month dedicated to educating people about skin cancer, how to incorporate regular skin checks into your wellness regime, stories, and other prevention strategies. For some, this may be a yearly reminder of skin cancer and how to be aware. For many, the awareness is an every day reality. I have a friend who is suffering from the effects of stage 4 Melanoma.  My father has had many instances of skin cancer in his life, and one of my earliest childhood memories is of his  head wrapped from a skin cancer surgery. In his older age he has had to have a skin graft to his ear for treatment of a malignancy.

Even with my relative awareness of the dangers of skin cancer, I find myself new to the daily awareness reality and the journey that is to potentially take me through the rest of my life.

November 27, 2018: I received a notice on my phone that my biopsy test results, from a spot on my forehead, had been posted in my online chart.  I opened it and while skimming through it, stopped at the words “Squamous Cell Carcinoma, in situ”. I showed it to my husband and we both froze on those words for a few minutes. The next day I set up an appointment to have the area treated with an “ED&C” (Electrodesiccation and Curettage) procedure, to remove any remaining cancer cells.  Due to my schedule and doctor’s availability, I had to wait until January 2, 2019. During that time I did a lot of reading and research and found out that in situ means the cancer cells had not spread.

January 2, 2019: I had the ED&C done which took only about 10 minutes.  Several days earlier I had noticed some small growths on my scalp, areas which had been treated in November with Cryosurgery (using liquid nitrogen) to remove suspect spots. I made an appointment for July, 6 months out from the ED&C treatment to have a follow-up and head to toe exam.

April 25, 2019: The growths on my scalp had grown exponentially and I sent photos to my doc comparing January to April.  I  was asked to come in immediately, First the area on my forehead that that been previously treated was examined.  Looking good!

Then my scalp was examined. There were three growths.  One was treated with cryosurgery and other two biopsied. My doctor told me it was good that I came in now instead of waiting until July. I had a massive headache the rest of the day and off and on head pain for the next 6 days.

May 1, 2019 – First day of Skin Cancer Awareness month, six days after the the biopsy. The test results came in:  Squamous Cell Carcinoma, *at least* in situ, possibly more deep since the margins were affected. Fortunately I was able to get this treated the very next day after the results had been posted. The two areas on my scalp s were treated via ED&C, with three passes and confidence that remaining cancer cells were eradicated.  I have been cautioned to look for any appearance of scaly areas around the treated areas and to come in immediately if that is noticed.  We all chuckled over my comment that I could now be called a “numb-skull” due to the anesthesia that numbed by scalp.

May 5, 2019: My scalp looks like it has two bullet holes in it.  The next 3 weeks will be spent attending to the areas as instructed to ensure proper healing.  I’m not sure if the damaged hair will grow back, and frankly I don’t care.  I am resigned to covering my head as needed and appropriate.

Three  diagnosed skin cancers in 5 months.  I’d like to think this is the end, however I thought that with the first one. “Hindsight is 20/20,” “It’s just skin cancer,”  “Be thankful it’s not melanoma,”  are all phrases I keep hearing.  My self-education and awareness, however, have led me to the realization that all skin cancer is serious, and not to be taken lightly. All one has to do is just read the stories of those diagnosed.  If that doesn’t help one’s awareness, a personal diagnosis of skin cancer for sure will shock you into awareness.

Vigilance will be my companion from here on out.  Advocacy, education, setting the example, checking myself, photographing suspicious spots ( I have files in folders on my computer now), wearing protective clothing, daily thoughts of living with skin cancer on my mind….all that and more are part of my daily existence now.

I say “part” because my existence is filled with so many good and positive aspects that help direct my focus and for which I am thankful.  And so my vigilance is the measure I must take to continue living  my life in those positive and fulfilling ways.

The photos throughout this post are representative of me in my life, often outdoors without protection.  I have always been a happy person and plan to continue my happiness, despite any obstacles I encounter or changes to be made as a result of those challenges.

 

 

What it Takes to Build Movements

I find it interesting to hear the sentiment that one person built or builds a movement.  I see it differently.

Throughout history there have been movements for numerous causes.  They have usually grown out of the concepts, ideas and inspiration of a collection of individuals or one individual who dedicated their lives/life to ending injustice. The ideas blossom into inspiration which in turn creates a domino effect of various forms of the ideas into movements. Sometimes it is hard to differentiate between movements and organizations, so we have to dig a little deeper to discover the inspiration behind the creation of the organization.

Here are a some examples of movements that have grown out of concepts, ideas and inspiration, with links provided to read more details.

Food Not Bombs

Food Not Bombs was born out of the concept  of feeding people, not war. FNB started after the May 24, 1980 protest to stop the Seabrook Nuclear power station north of Boston in New Hampshire in the United States. The people that started Food Not Bombs shared their first full meal outside the Federal Reserve Bank on March 26, 1981 during the stock holders meeting of the Bank of Boston to protest the exploitation of capitalism and investment in the nuclear industry.” Today there are Food Not Bombs groups all over the world.

Boycott Movements

Boycotting, Divesting and Sanctions are concepts that have long histories in a variety of forms,such as Fossil Fuel Divestment, the British Anti-Apartheid Movement / InternalResistance to Apartheid .  The original “Boycott Movement” was founded in London in 1959 at a meeting of South African exiles and their supporters. Members included Peter Koinange, Claudia Jones, Steve Naidoo and Ros Ainslie. The Boycott/Divestment/Sanction (BDS) movement was organized in 2005 by the Palestinian BDS National Committee.

Green New Deal

Green New Deal is a concept that was given prominence by journalist Thomas L. Friedman. Green New Deal has taken on a variety of platforms by numerous groups and individuals, inlcuding Van Jones, Jill Stein, Colin Hines (Green New Deal Group),The Green Party of the United States and The European Green Party.

Non-Violence

Mahatma Ghandi is credited for the inspiration that ended the colonial occupation of India. He gained notoriety due to his British education and ability to articulate to the issue of non-compliance with the demands of the colonizers.  His vision and bravery inspired a movement of actions by the people that ultimately resulted the end of British rule. His influence is the catalyst for many peace and justice organizations today.

Civil Rights

Civil Rights Movements are numerous throughout history. An example is the Civil Rights Movement for African-Americans in the United States in the 1950’s and 1960’s.  Dr. Martin Luther King, Jr. is largely credited for leading the civil rights movement from 1954 until his death in 1968. His visibility and outspokenness influenced and resulted in a mass movement of non-violent direct action by millions. Dr. King’s vision is carried on by numerous organizations and individuals promoting the concept of non-violence in activism.

Dr. King also organized the Poor People’s Campaign  which is an economic justice and  human rights campaign for poor Americans of diverse backgrounds, spurring a movement that has grown and continues today.

The list is endless. There is the Occupy Movement , Black Lives Matter, Human Rights Movement, Animal Rights Movement,  Victory Gardens, etc. Again these are just a few examples, for the purposes of invoking thoughts on what it takes to “build a movement”.   Not one person for sure.

An example in my own life is an annual event that I help organize, inspired by a similar event in another part of the county – our Annual Community Coat Exchange – the day after Thanksgiving, which (strategically) is also Buy Nothing Day (another movement that inspired the Coat Exchange nationwide). We have been doing this each year for 13 years.  If we all do our part – our small part – in the larger scheme of things, we are inspiring ever increasing social justice movements globally. It takes many people to build and idea into a movement.

What are you doing these days in your part of movement-building?