Why do we call ourselves 
Cancer Militia?  And whats up with all the camouflage?

Cancer is a threat to human lives.  A militia is a defense activity or service to protect a community by a group of persons who respond to a threat to public safety.  Our founder is a Melanoma cancer survivor.  Skin cancer can often hide or camouflage their appearance and can be difficult to see.  So we thought camouflage would be easy to remember us by.  When faced with a cancer diagnosis, we believe that it is  better for the patient to have a "fighter frame of mind" or "the warriors way" attitude.  

What Cancer Cannot Do
It cannot cripple LOVE
It cannot shatter HOPE,
It cannot corrode FAITH,
It cannot take away PEACE,
It cannot destroy CONFIDENCE,
It cannot kill FRIENDSHIP,
It cannot suppress MEMORIES,
It cannot silence COURAGE,
It cannot invade the SOUL,
It cannot conquer the SPIRIT...
Cancer is so VERY limited.
-Author Unknown

 About the founder, Shari Ellwanger

I was born in Denver and grew up in Boulder, Colorado.  I am currently living in Longmont, Colorado.  I enjoy 360 plus days of sunshine a year.  In the summer it’s hot.  In the winter it’s cold.  I think people assume that since Colorado is surrounded by mountains, that it must be snowy and cold all the time.  The sun in Colorado is very deceiving.  You can be freezing your “you-know-what off” outside on a wintry day and still get sunburned.  People just don’t give it much thought.   Skiers will ski all day and forget to put on sunblock, and then a few days later they are peeling off layers of skin from their sunburned faces and cracking jokes about it.  I see it and hear about it all the time.  Friends comparing their sock lines and farmer tans.  Teenagers harassing a friend about how pale their skin is.  You might even have a circle of friends that insist they have to be tan all year.  They frequent tanning salons and never use sunblock.  They don’t want to be seen with pale pasty skin.  Instead they damage their skin constantly and end up with red or brown leathery skin and think they look good.  I know this because I used to be a lot like them.

 I have blond hair, blue eyes and fair skin.   As a child I would spend all day at the local outdoor swimming pool.  As I got older, I would tan in our backyard with my older sister and our mom.  We would use baby oil, tin foil and dark colored towels to attract the sun,  so we could tan faster. I survived several bad sun burns as a child.  Revenge from a sun-kissed day.  Cold aloe vera gel was always on hand in our house.  It would sooth my skin and help speed up the healing process.  I would get the chills, my skin would turn bright pink, then a few days later it would start to blister.   My nose, chest and shoulders were always the worst.  The blisters would pop, the skin would peel off in chunks and then it would appear that I had a tan.  This ritual went on for years as a child and a teen.  We never once gave skin cancer or mela? what? melanoma a thought.  It wasn’t talked about very much in the 70’s and 80’s.  Boy, were we smart.

The sun is big, I am small.  The sun can see you through the clouds, even if you can’t see the sun.  I learned this the hard way.  The warning flags were there, I just chose to ignore them.   When I was in middle school, one of my cousins passed away.  He and his wife had just had a baby boy, and were starting their lives together.  He was a construction worker and spent a lot of time outdoors in the Colorado sun.  He found a lump behind his ear and put off seeing a doctor about it, until he started losing weight and feeling ill all the time.  Within 2 months of hearing the news that he had melanoma skin cancer, he died.  The melanoma had spread to most of his internal organs; it was too late and too aggressive to treat.  He was only in his thirties. 

In the early spring of 2002 when I was 29 years old.  I noticed something different about a mole I had near my left shoulder.  The weather was warming up, and I had just pulled out my summer box of clothes.  The mole was starting to get irritated by my bra and tank top straps, and the mole started to look red and puffy.   I blew it off for a little while.  I had already been to the Doctors office a few times the prior year.  I had been concerned about possible lip cancer, because I had a non-healing lesion on my lip.  Unfortunately the few dermatologists that I did see at the Kaiser Permanente medical offices couldn’t heal it with creams, antibiotics or freezing it with nitrogen.  The last dermatologist I met with was 45 minutes late to my appointment, and when I showed her the list of health concerns I wanted to discuss, she said the list was too long.  She could only discuss one or two concerns.  She said my lip was just severely chapped and told me to drink more water and try yet another ointment.  I asked her to look at a mole near my left shoulder, because I noticed it was growing bigger.  She told me that since it was not dark in color or large enough to be cancerous I should not be concerned. 

Picture of the suspicious looking mole (see left shoulder area) below.

A month passed and the mole was looking worse.  It now had a red ring around it and was itching and burning really bad.  I had lost confidence in the dermatologists I had seen.  This time I made an appointment to see a nurse practitioner because all the doctors were booked.  Finally someone who was willing to listen to me and take my health seriously.  This woman is saving lives!  She listened to my concerns and did a thorough skin check.  The nurse at the time was a 9 year breast cancer survivor and seemed very concerned with the mole near my shoulder.  She wanted to do biopsies of my lip and shoulder.  She mentioned the possibility of cancer on my shoulder.  I told her what the last dermatologist had said about the mole not being dark enough in color to be cancer.  But this nurse had seen moles that were non-pigmented (meaning skin toned in color) that had been biopsied and came back cancerous.  Though not as common, but possible.  I agreed to have the skin biopsies.  And then I waited to hear the results.  

3 weeks and no news as of yet.  I played phone tag for 2 weeks with my doctor and the nurse.  The nurse was growing impatient with the lab and the lack of results.  Somehow the lab had misplaced my results (for 2 weeks).  I’m guessing they ended up underneath a pile of paperwork on someone’s desk.  I felt I was regarded as a # on a lab report and not a human being.  After 3 very long weeks, I got the phone call that would forever change my life. 

I was at work that day.  I was an office manager for a company in Boulder.  I answered the phone for the office as I did all day every day.  This call did not need to be transferred.  It was for me.  I heard a familiar voice on the other end.  It was the dermatologist that had not taken me serious in previous appointments.  She did not try to soften the blow I was about to get.  She said frankly, “Shari, your lab results are in.  You have malignant melanoma (the deadliest form of skin cancer).  You will need to make an appointment right away for further tests with an oncologist and treatment options.”  I can’t stand this woman, why is she telling me I have cancer.  I was shocked and surprised that something of this sensitive nature would be discussed initially over the phone and not in person. 

 I met with an oncologist at the Rocky Mountain Cancer Center in Boulder.  The doctor ordered a CT-Scan, chest x-ray, brain MRI and blood work.  Luckily, at the time I had a health insurance policy that would cover most of the costs.  The initial biopsy of the site with melanoma was diagnosed as desmoplastic malignant melanoma.  A very uncommon form of melanoma with an aggressive behavior.  In addition to the tests above I had another procedure called a Sentinel Node Biopsy.  To figure out if the melanoma had traveled into nearby lymph nodes they injected a small amount of radioactive material near the site of the primary melanoma.  Then they used a scanning machine to see if any areas would “light up” which could indicate spreading of the cells.  During the re-excision of the melanoma  they also removed breast tissue and a few lymph nodes.  I woke up from the surgery with a drainage tube coming out the left side of my body just below my armpit.  This was a lovely accessory that I got to carry with me for the next 5 days.  It helps to drain blood and fluid from a wound and reduces the risk of infection.  The surgeon then rips this tube out of your side (about 4 inches of the tube is inside your body).  It is extremely painful.    

Final diagnosis, no metastatic (spreading) disease was present in the lymph nodes.  Desmoplastic Malignant Melanoma, Stage IIB, Clarks Level IV, Breslows thickness 2.32mm.   I have some nerve damage in my left arm from the surgery and pain in my chest and arm frequently due to lymph edema (fluid retention).  It is common after a sentinel node biopsy. 

I have a 10 year, 60%  survival rate.  This year I will be a 8 year survivor.  I have had 32 plus skin biopsies with several wide re-excisions to remove precancerous cells.   5 chest x-rays, 4 brain MRI’s and 7 CT-scans.  A lot of stitches, a lot of scars and a lot of blood work.  Unfortunately I lost my job in 2002 just 6 months after being diagnosed with cancer.  Along with that I lost my paid health insurance benefits.  It is not easy to pay for an additional $450.00 monthly bill, let alone pay for other bills without a job.  So I decided that working for other people was too risky, you could be let go at any time (I spent 4 years of my life, dedicated as an office manager at a company  that let me go at the drop of a hat).  So over the past  8 years my husband and I have been self employed.  We have had some good years and some bad years.  But it has molded us in to better and stronger people and we have learned a lot of hard lessons along the way.  We are finally realizing what is most important in life.  And to us that is Faith, Family and Friends. 

American Cancer Society, Relay for Life-Me and my Aunt walking with other cancer survivors in 2008.

Cancer is all around us.  Skin cancer is one of the most common cancers.  My father  was diagnosed with stage II melanoma a few years after I was diagnosed.  There are a lot of things you want to share with your parents, cancer is not one of them.  My Aunt is a breast cancer survivor. One of my husbands Aunt’s lost her fight with breast cancer and his Uncle and Dad (brothers) both had cancer as well.  

 

Melanoma Militia was formed, finally after years of stress, anxiety and anger that I have felt over the lack of awareness of this disease among young adults and children.  Over 75% of high school students have never heard of melanoma or skin cancer and others disregard the seriousness that goes with a diagnoses of melanoma.  Of those that have heard of melanoma and skin cancer (but have not had it themselves), think that a doctor removes some damaged skin and your cured.  This may be true at an early stage skin cancer.  At a later stage it is more difficult to treat, because the cancerous cells may have already traveled through your blood stream and started nesting in another organ.   Once you are diagnosed with cancer it is like having the letter “C” branded on your forehead.  The health insurance company Kaiser Permanente of Colorado decided very early on that they would do everything in their power to get rid of me.  By increasing my monthly health insurance premium by $45.00 every 3 months until it topped $600.00 a month.  I was actually using my insurance benefits that I had paid for, and now that I have cancer, they do not want my business.  Since I had a history of cancer, I had to have insurance.  But we could not afford the constantly rising premium for the whole family.  So first we dropped my husband from the plan, then our daughter and finally me.

I do not want this to happen to anyone else’s family.  I continue to get denied the benefit of health insurance because I had melanoma 8 years ago.  I apply each year to several health plans and wait 2 months to receive the denial letters in the mail.  I am only 37 years old.  I am not over weight, I do not smoke, I exercise regularly, I look healthy but I am too big of a pocket book risk to the insurance companies.  A Ct-scan I had  in 2005   showed several new masses on my liver that were suspicious of  metastatic melanoma (spreading), as well as a  stable mass on my liver  (not growing) that was seen in a scan from 2004.  I was advised by my oncologist that they would just wait and watch the masses.  I was supposed to have another scan in 2006 to see if the spots on my liver were stable or had grown.  3 years later, still no insurance.  Ct-scans are in the $4500 range per scan.  In 2009 I did manage to get a CT-Scan for a discounted rate.  My liver is still Stable, but my thyroid is enlarged, has solid and fluid masses in and around it.  A few needles in my neck (biopsies)  and a couple of thyroid ultrasounds later I learn that the Doctor is "pretty sure" he is looking at benign masses and that the unplanned 20 lb weight loss in the early part of 2009 is of no signifigance.  No treatment plan, just a big ol thyroid with lumps on it.  

This past December 2008, an acquaintance of my Father and my husband (old business relationship) was diagnosed with melanoma.  She was a red head, fair skinned and in her fifties.  She left work one day with a really bad headache and then several days later on Christmas Eve morning woke up and didn’t have any feeling in one of her legs.  Tests at the hospital revealed that she had Stage IV melanoma.  She started chemo right away, but further tests showed that the melanoma had already spread to her brain and lungs.  And sadly, she died about a month or so after the diagnosis.  That was the final straw for me.  I had been hearing of more and more people being diagnosed with melanoma in the later stages with unfavorable outcomes.  I felt it was time to put a stop to this deadly disease.

 

 By raising awareness, teaching prevention and early detection in our community, we can hopefully save lives!  I realize that there are a lot of uninsured people living in our community.  I hope that through inspiration, fundraising, teaching and providing resources and sun protective products to our community we can limit the number of deaths and increase survival rates of skin cancer and melanoma.  I hope you will check out our 2009/2010 schedule of events.  And if you want to help us with our mission and have the fighter frame of mind, please check out our donation page for several ways to make a positive difference in your community!  Thank you for taking the time to read my story.  To be continued… 
 
July 12th 2009 I lost my Dad to Stage IV melanoma.  A recurrence of his Stage II melanoma diagnosis from 4 years prior.   It all happened so fast.  I miss him terribly and can't believe that he is gone.  I started Melanoma Militia in February of 2009 and was shocked when I learned that my dad's cancer had returned just 3 months after the militia was formed.  A year has almost passed, but the images are still fresh in mind and they haunt me.  It angers me to know that people still say to melanoma patients "your lucky its "just skin cancer".  Ignorance is not bliss, its reckless! 
-Shari MM 

 

 

 

 

 

 

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