The Wall of Silence

New Focus Daily’s Cindy Chafin has been chatting with Colleen Johnson – also known as Granny Ruth Hogg – to discuss her amazing story of survivorship and triumph.  You can read Colleen's earlier May interviewhere.

New Focus Daily’s Cindy Chafin has been chatting with Colleen Johnson – also known as Granny Ruth Hogg – to discuss her amazing story of survivorship and triumph.  You can read Colleen’s earlier May interviewhere. This inspirational lady is at it AGAIN and we are sharing her own words below about her next race and breaking the “Wall of Silence” about endometrial cancer.

 This article is text from a letter Colleen wrote to the National Comprehensive Cancer Network (NCCN) in response to questions asked of Colleen.  The NCCN has power in the cancer community, and they are on board to trying to help give the Manchester, TN “A Race for the Ages” which is Colleen is participating in, attention as well.

 This article is scheduled to post at the exact time Colleen begins her race, 9:00 p.m. CST on Friday, August 31st.  By clicking this link, we can follow Colleen’s progress. All results will be posted live online, and will automatically update each time a runner crosses the start/finish line. Visit Colleen’s website below to see the results  – www.ultratimingpros.com– or through this direct link.  #GoColleen! #WallofSilenceDestroyed

Colleen’s Words:

My most important goal that I am working on right now is the 100-mile race that I am scheduled to do over the Labor Day weekend, 2018.  The race is A Race for the Ages (ARFTA), an annual ultra-marathon held each year in Manchester, TN.   This will be my third year to do 100 miles in the race.

Marathons are only 26.2 miles — so doing 100 miles in a race is almost the same as doing 4 marathons back to back.  (26.2 x 4 = 104.8 miles).

These types of extreme ultra-marathons are very tough to do, even for somebody who is young and healthy.   And I am neither young, nor healthy.

I will be 63 years old when I cross the start line of the Manchester ultra-marathon – a cancer survivor with borderline osteoporosis (bone thinning – the result of 5 years of cancer treatments) plus pretty bad arthritis in my knees, especially the right knee.  To run, I must wear a special brace on my right knee especially prescribed for me by my orthopedic doctor.

In addition, I am a type 2 diabetic.  In normal, daily life, I have enough control over my diabetes that my blood sugars now routinely test in the “normal” range, and my GP considers me to have “reversed” the type 2 diabetes.  100 pounds of weight loss coupled with regular, vigorous exercise really can reverse type 2 diabetes, in at least some cases. However, when I run extremely long races like ARFTA, they are so taxing on the body that I must measure my blood sugars periodically during the race despite the fact that my diabetes is generally under excellent control.  If my blood sugar reading is off, I have to adjust my nutrition plan on the spot.  Even with “reversed” diabetes, I run a slightly greater risk than the average 63-year old runner of experiencing hypoglycemia when I run ultra-marathons.

On top of these issues that are unique to me, there is the fact that this ultra-marathon is being held in the heat and humidity of a southern summer.  It is not unusual for ambient afternoon temps to be well into the 90s, with the heat index well over 100 degrees. Nights tend to be cooler, so I gear myself to run most of my miles after dark.

So the 50 cent question is:  Why would any (presumably sane) 63-year old lady cancer survivor ever run 100 miles under these circumstances?  The short answer is that there is a “Wall of Silence” surrounding uterine cancer, and I am determined to do whatever I can to break that wall down.

The American Cancer Society predicts that over 63,000 ladies will be newly diagnosed with uterine cancer in the year 2018 alone.  That makes uterine cancer the 4th MOST COMMONLY OCCURRING CANCER found among women in the United States. In addition, uterine cancer is — by far — the most common of the gynecological cancers. The number of newly diagnosed uterine (endometrial) cancer patients outnumber the number of newly diagnosed ovarian cancer patients almost 3 to 1.  Uterine cancer patients outnumber cervical cancer patients 4 to 1.

The American Cancer Society estimates that somewhere over 700,000 survivors of uterine cancer currently live in the United States. This makes them the second largest group of female cancer survivors in the nation, behind only the breast cancer survivors. YET, the mass media almost never mentions uterine cancer.  There are no public campaigns to educate the public about endometrial cancer – to tell them what endometrial cancer is, or what its warning signs are, or what controllable lifestyle factors place a lady at greater risk of getting it — the way that there is for every other commonly occurring cancers, and a number of rare ones as well.

There are almost no support services for the ladies with uterine cancer, other than the few services that the American Cancer Society offers all cancer patients regardless of diagnosis.

For example, despite the fact that research has established that newly diagnosed cancer patients do best if they are able to connect with others who have gone through their same cancer, few cancer centers anywhere in the nation offer this support to their uterine cancer population either by individually matching uterine cancer patients one-on-one, or by offering specialized psycho-support groups exclusively for those with gynecological cancer.   This is the case nationwide, even though these same cancer centers routinely offer specialized support groups for those with other commonly occurring cancers -for example, specialized support groups for breast cancer patients only, or prostate cancer patients only, or brain cancer patients only, or for those with blood cancers, etc.

Research dollars for uterine cancer are also sorely lacking for the ladies with endometrial (uterine) cancer.   Recent published research revealed that – of the 13 most commonly occurring cancers in the United States – uterine cancer received by far, the fewest research dollars from the National Cancer Institute in the years 2007-2014.

This is particularly devastating when you consider:  Who – other than the federal government – offers any money at all for research for uterine cancer?

Have you ever run into a charity group or cancer clinic holding a fundraising event to raise funds for endometrial cancer research?  Do you know of any 5K road races – other than the one that the Foundation for Women’s Cancers has in our nation’s capital in November – that are held to raise funds, or even just awareness, for the ladies with endometrial/uterine cancer?

Is it any surprise — given the lack of money spent researching uterine cancer — that the number of ladies dying of uterine cancer is SKYROCKETING at the very same time that deaths due to almost every other type of cancer is going down? There was an astounding 56% increase in the number of ladies who died of uterine cancer in the years between 2000 and 2015, according to the official government statistics from the Centers for Disease Control.

Meantime, the American Cancer Society is predicting a 28% increase in the number of women dying of uterine cancer in just the 5 years that I have been road races, that is between 2013 and 2018.  There is NO OTHER CANCER (with the possible exception of liver cancer) that is experiencing such rapid increases in the number of persons dying of the cancer.

The American Cancer Society is quick to remind us that research saves lives. Is it any surprise, then, that women with uterine cancer are experiencing rapidly escalating death rates, when there is almost no research being done to save the lives of those ladies with high risk or metastatic uterine cancer?  There is no foundation, no political action committee, no charity at the national level, that is dedicated to addressing the unique medical, financial, medical research and psycho-social needs of the ladies with endometrial cancer.  It is the ONLY major cancer in the United States that has no organized charity fighting for those afflicted by the cancer.  Many RARE cancers have at least one (sometimes more than one) organized charity to fight for it.   Uterine cancer, on the other hand, is NOT a rare cancer at all — it is the 4th most commonly occurring cancer among women, and yet they lack an organization dedicated to fighting for research, or better treatment for them.

Heck, even DOG cancer now has an organized group to give it a voice! PetCo sponsors it, if I recall correctly. Think about it.   As a society, we even offer DOGS with cancer an advocacy group to speak up for them, and to fight for research in their behalf — but we offer no such advocacy group for the ladies with the fourth most commonly occurring cancer among women in the United States!

I am only one person. A 63-year old diabetic, endometrial cancer survivor.   A lifelong, obese couch potato who didn’t even begin running until she was 58 years old.   A cancer survivor who lost 100 pounds and (at least thus far) has managed to successfully outrun her cancer. A woman who was given only a 20% chance of surviving 5 years — back almost six years ago.  I have no money.  No political influence.   And since there is no formal support group to support ladies with uterine/endometrial cancer, I have no support behind me other than my husband, few close friends from the mid-south running community, and a few other supporters that I have picked up here and there, along the way.

I have only three resources to draw upon in my fight for the ladies with endometrial cancer:  my special running shirt, my well-worn running shoes — and a willingness to do the near impossible for yet a 3rd time during Labor Day weekend, 2018 – my willingness to run/walk 100 long, sometimes painful miles in ARFTA to raise awareness of endometrial cancer.

FYI: Last year, I had to run the first 14 hours of my race during the torrential rains of Hurricane Harvey (mercifully only of tropical storm strength by the time it hit Manchester), as it slowly made its way its way through central Tennessee.  While the streets of Nashville were making national news for their flooding, I was running my race an hour south of Nashville, and had to run in heavy rain and wade through as much as 8 inches of water at some points along the course, in order to achieve my miles.  That, in turn, left me having to run the rest of my miles-after the storm finally passed through- with painful, blistered feet.  There is only one reason why I didn’t quit the race right then and there — the ladies with endometrial cancer.  I knew if I quit on them, there would be no one who would carry their banner into September – into Gynecological Cancer Awareness month.

There is a “Wall of Silence” that surrounds endometrial cancer. And I am willing to run the rubber right off of the souls of my running shoes, if need be, in the effort to try and break down that “Wall of Silence.” 

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New Focus Daily
New Focus Daily (Formerly NOU Magazine) is a women’s lifestyle magazine, providing a go-to guide for health and wellness, cancer survivorship, finances, career, relationships, inspiration and more.
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