Redheaded Step Child…

First, I made it to Philly. My mother and I have gone shopping together and we are waiting for my various siblings and their families to join us for dinner! I am very glad I could make it and I am glad my brothers and sister (and their families) will get an opportunity to see me before I start chemo/radiation, etc.!!!

Last night, after I had (mostly) recovered from my “porting,” I went over to the karate school and helped out with class. The main reason, though, was (a) so that “my” students (Thank you Mr. Quinn for allowing me to teach at AK) could see that I was up and about, and (b) so that I could reconnect with Ayanna TooveyGreen. Ayanna’s son had been taking karate at AK prior to my starting, but he was always “Smylon” and a (generally) happy disposition. Ayanna re-married last year to a man in the military and they were, sadly, re-stationed in Arizona. Earlier this year, Ayanna and her son moved and left a void in the AK family. Happily, though, Ayanna and her son were back in town and I wanted to spend time with them.

Her son is less than pleased with moving to Arizona (as he essentially lobbied everyone at the school for sanctuary (from Arizona). Ayanna, who is pregnant with a little girl, was met with hugs and kisses from both students and parents alike! So much so that, when all was said and done, I had to wait until after classes to get some time to sit down and chat. So Ayanna, her cousin, Star, and I went to get something to eat, and here is where the title of this post becomes germane.

We got dinner at a food court at a mall owned by the Simons corporation. Hanging in the food court was a huge banner that said Simons would donate $1 to the Susan G. Komen for the Cure fund. Now, this post in no way should be interpreted as suggesting that donating to support breast cancer research / treatment is not appropriate. Instead, it highlights my perception that pancreas cancer is the redheaded step child of cancers.

I had noted, while visiting the oncologist, a sign that listed a variety of awareness ribbons for different kinds of cancer: breast cancer (pink); prostate cancer (blue); leukemia (orange); bladder / liver cancer (yellow); etc.; however, there was no listing for pancreas cancer (though, I have since learned that “our” color is purple). Indeed, on the sign at the oncologist’s office, pancreas cancer would have been represented by the lavender ribbon (CNOS – “cancer not otherwise specified” — that was my interpretation; the sign did NOT say that)!!

I understand that pancreas cancer is very rare (an incidence rate around 0.01% in the United States, in general; even more rare is being diagnosed with pancreas cancer under the age of 50), but it remains the 4th (or 5th depending on the source) leading cause of cancer-related death in the country. Despite its prominence as a leading cause of cancer-related death, there is relatively little advocacy for pancreas cancer. Awareness was raised when Patrick Swayze announced he had it. Moreover, I have spent some time reading Dr. Randy Pausch’s blog and once the video of his “Last Lecture” became so popular on the Internet, he wrote that he was going to use his “D-list celebrity to do some good.” So he has recorded some public service announcements about pancreas cancer and even gone before congress to testify (check out his website for clips of his PSAs and his testimony). By the way, Dr. Pausch added to the information he talked about in his lecture and it is now available as a book (also entitled The Last Lecture).

His example has motivated me to do something, but I’m not entirely certain what. If nothing else, perhaps this blog will help others (outside of those affected by MY having pancreas cancer; a friend of mine, Renee, told me she shared my blog with a friend of hers who has severe environmental alergies who, as a result, lives a very isolated life. Renee told me he found some solace / inspiration from my blog). Feel free to let me know if you have any ideas!

There I go being all verbose again…

Merle

  1. Merle,

    This is Scott; Renee’s friend with environmental allergies. I just wanted to confirm what Renee had told you about your being an inspiration to me (and other’s I’m sure!). While our illnesses and situations are very different, we’re certainly both dealing with “good lives interrupted”, which I know is not easy. The example you’ve shown has truly been an inspiration to me and I thank you sincerely for that. I should add though that you shouldn’t feel pressure–either internal or external–to always be “inspirational”. Tough days–physically and/or emotionally–are just part of the deal when faced with a serious illness–we’re human after all! So I say just tell it like it is, and the inspiration will take care of itself by virtue of the kind of person you are. All the best! Scott

  2. Having been a redhead (albeit, slightly gray) my entire life, I have to tell you that flying under the radar is not always a bad thing. A golfing friend of mine uses only pink golf balls because her mother is a survivor of breast cancer. As silly as it seems, if I can manage to find them, I’ll start using purple golf balls in your honor. Now, you know how much I love to play golf, so you can also know that I’ll be thinking of you each time I hit that ball!!!! (Oh, the images that just went through my head :-) )

    And I’ll see you in San Juan, where I may try to sneak in a round of golf or two.

  3. Good afternoon, Merle! I am still a “Merle Fan” but I wanted to encourage you that while you may feel like a red-headed stepchild at times – any progress against cancer is progress! What is achieved in research against one is more than likely applied in research against another. Please understand – Ovarian cancer isn’t exactly on the forefront of everyone’s radar either, but I know there is progress being made and some of my treatment and planning for my treatment was because of success in treating other forms of cancer. We are all in the same boat, my friend. I may be jaded but for me, progress is progress. :)

    I hope you are doing well today. Let me know if you have any questions or run into anything you aren’t sure of. I can share my experience with you.

    In the trenches with you,
    Rhonda

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