"Cover Your Butt. Schedule Your CRC Screening"

If you ask Roger Rojas the choice is simple. "I'm just hoping someone will listen," he wrote to me.
          He's talking about colorectal cancer screening.  A tweet he wrote this morning caught my eye: 
          "At work, not feeling well. Tried to convince co-workers to get screened for colorectal cancer, maybe they can avoid this pain and discomfort."  
         The father of three had few of the usual symptom associated with colo-rectal cancer and at 34, was not a candidate for the screening.  Yet his hope is that those of us who CAN be screened take the opportunity to do so.
         My two cents worth?  I scheduled my first colonoscopy at MD Anderson when I was 46 since my breast cancer diagnosis and family history raised my risk to some degree.  Let me tell you something.  This is nothing.  A pap smear feels more invasive than a colonoscopy, if that helps you at all.  And the prep?  I think it's designed for people who weigh 250 pounds and eat hamburgers and french fries.  I rarely eat red meat, enjoy a lot of fruit and vegetables and the prep wasn't nearly as bad as I expected.
          If you want to understand more about the procedure colon cancer advocate and CBS anchor Katie Couric talks with Harry Smith before his procedure at: http://bit.ly/bO3m8E
          For more terrific information go to the ColoRectal Cancer Coalition:  http://fightcolorectalcancer.org/
          Nip a cancer in the bud (butt)... so to speak.  Like breast cancer, if caught early colon cancer is easily treated.  The physician can remove the cancer by scope before more invasive surgery is necessary, and before the cancer has spread.  Do what you can.


Livestrong,
Jody


Photo courtesy of C3: Colorectal Cancer Coalition.

perspective in grey

On June 30th it will be three years since my first clean scan, after the cancer had spread to my liver.

For almost three years, I have had no evidence of disease (been NED, in cancer lingo).

And yet I remain in treatment.

I am asked frequently why I continue to receive chemotherapy and Herceptin, if there is no sign of cancer in my body. And the truth is that I often ask myself the same question. Certainly, I don't feel like I have cancer. And I do feel that the cumulative effects - both physical and emotional of ongoing treatment are wearing me down.

I am stuck in cancer's grey area.

My oncologist said to me last summer, "For all we know, you could be cured."

We just don't know enough.

Another oncologist I spoke to, hinted that some would take me out of treatment at this point. A third suggested that some doctors might take me off the chemotherapy and leave me on the Herceptin.

But they all agree that we just don't know enough to make any decision based on certainty. There are just too few women in my situation, younger women who have been diagnosed with metastatic breast and responded so well to treatment, to know what to do with us in the long term.

There are more of us every year, though.

In ten years' time, there will almost certainly be more answers.

And when I get too frustrated, I remind myself that if I had been diagnosed ten years earlier, I would almost certainly be dead.

So, for now, I'll take the grey.

re-emerging

I don't know whether it's the unseasonably warm and sunny weather (It's about time I noticed that I get depressed every winter and recover every spring), a recent change of scenery or just the passage of time but I feel myself re-engaging with the world.

Shortly after writing my last post, I decided to "give up" on forcing myself to write. I was spending tons of time staring at the blank screen or coming up with creative ways to avoid writing - and feeling pretty miserable about it. What I was doing wasn't working and I had to make a change. So I decided to walk away.

But lately my heart beats a little faster when I think about putting pen to paper and fingers to keyboard. The creative synapses are buzzing and I have lots of ideas for new projects and a whole new approach to how I go about doing them.

It feels good.

I'm on a yarn crawl, I'm on a yarn crawl!

No I am not at home. My husband and the giant cat are home to guard the house so burglars forget it. They are also supposed to be repainting the upstairs bathroom.

I left Friday morning to visit my brother who lives in Rochester, NY. I have to drive 400 miles in each direction. When you get to Albany, after over 2 hours in the car, the GPS says "Take I 90 west for 200 miles, then take exit 45". That's very depressing. I don't use the GPS any more until I get off the highway. (Just don't tell my brother I don't know how to get to his new place from the highway without directions.)

So with anticipation of this fun drive, even if I refill the CD player, I have decided to make a few yarn store stops. I have picked out two to stop at on the way there, two for while I am there, and two the trip home. That will be six total which is plenty. I will probably buy too much yarn but it will be fun.

For those of you who don't know, I knit and crochet scarves, cowls, and headbands which I sell at craft fairs in November and December. This keeps me busy year round and gives me some extra spending money in time for the holidays.

I am getting away for a change. I have had a lot of stress and too much to do at home so I need some time away. I think it is relaxing because in addition to spending time with my brother, I have fun with my nieces and nephews and the two new kittens. I am screening my phone calls as well as ignoring my email.

I return home tomorrow night. With a big bag of yarn. And will see a newly painted bathroom I hope. Maybe we will even be able to pick up our new car - which is another cause of stress in itself.

stepping in the right direction

On the Saturday evening of the 10th Annual Conference For Young Women Affected By Breast Cancer, a group of participants went out for dinner.

Many of us had not met before that evening. We came from Texas, California, Massachussetts and Georgia. I was the lone Canadian. It was a truly lovely evening. The food was great and the conversation flowed - from the trivial to subjects of greater import, from the general to the intensely personal.

About half-way through dinner, the subject of health care reform was raised. I said that, as a Canadian, I couldn't understand why anyone would oppose universal health care, especially anyone who has had a life-threatening illness.

Most around the table agreed with me, while one woman stated that she was resistant to any more government interference in people's lives. I soon found myself addressing the pervading myths about our health care system and was asked whether it was true that Canadians were cut off from health care when we turn 75.

I said, "No, that's not true and we don't have death panels, either."

The conversation was very respectful and never tense (unlike many, many other debates on this issue) and soon we moved on to other subjects.

And today, I want to congratulate my American friends for ignoring the fear-mongering and taking a significant step towards greater access to health care.

Please take a nanosecond to feel sorry for Myriad Genetics

They have become lawsuit happy. The Supreme court has said no company can hold the patent to a gene last summer. This means that Myriad Genetics has lost their monopoly, huge prices, and ability to strong arm the breast cancer population with their patent on the BRCA genes Okay that nanosecond is now long over.

Now we can get on the road to reality. Myriad has decided that since they have lost their patent, their lawyers are going to get rich. They are in the "let's sue so we can keep our monopoly as long as possible".

"Last week's ruling by Judge Shelby is perfectly clear about all that is at stake for Myriad:

Although Plaintiffs [Myriad Genetics] have shown that they are likely to suffer irreparable harm through erosion of their test pricing structure, loss of their share of the testing market, and loss of their exclusive patent terms if an injunction does not issue ... Plaintiffs are unable to establish that they are likely to succeed on the merits of their claims.

In other words, Myriad's earnings will undoubtedly take a serious hit from increased competition, but this fact cannot override the substantial doubt about whether they will prevail in their legal claims."

I hate people that are lawsuit happy.

But this underscore additional issues with genetic testing and personalized medicine.

"Not only have the courts pushed back on Myriad's monopoly, at the end of 2013, the Food and Drug Administration (FDA) moved to stop the direct-to-consumer genetic testing company 23andMe from marketing and selling its DNA testing service without approval.

As with all medical drugs and devices we must balance the desire for innovative new treatments with our demands for safety and efficacy. As more labs and companies enter the BRCA testing market, we must ensure that these tests are properly regulated to protect public health and patient interest. Genetic tests claiming to provide medical information must be analytically and clinically validated so we know that what companies are telling customers is in fact accurate. Nor should companies be permitted to overpromise the benefits of genetic testing or to drum up people's fear of disease in order to sell more tests. All genetic testing should be accompanied, both before and after testing, by independent and professional genetic counseling so that potential customers understand the limitations of testing, their individual test results and all of their medical options.

Finally, we should refuse to allow companies to hoard, for their own gain, our medical and bio-data collected through the process of testing. Critics of Myriad have long noted that the company stopped contributing to the primary international database on genetic mutations related to breast cancer, in what is widely seen as a move to further capitalize on their monopoly access to more than a million women's family history and genetic information. Similar critiques have been made that 23andMe is using its customers' bio-data and familial information to launch new business products."

Genetic testing is the new thing. I'm  not ready to turn my DNA over to just anyone. And I would be very upset if they tried to upsell me on additional tests based on what I already have...

But I will follow this story and see where it ends up. But I never felt sorry for Myriad Genetics.

Fearless Friends

Last Sunday the Discovery Channel launched a seven-part series, "The Frozen Planet," an epic documentary of the earth's polar regions and the very real threat posed by global warming.

         
I could spend the rest of my life watching television like this, or studying animals in general and dolphins in particular.

Dolphins stay in small units, or pods, and communicate via an elaborate system of whistles, clicks, and squeaks.  We all know about the squeaks from Flipper and bad Disney films. But their group behavior is something that can constantly teach us.

Instead of casting a weaker or ill member aside, as many other animals do, a pod of dolphins will often surround an ill dolphin and work as a team to bring her up to the surface for air to prevent her from drowning.  In other cases, bottlenose dolphins have been seen biting and pulling through nets to save a captured companion or staying close to a female dolphin in labor.

While these "empathy-based" behaviors are difficult not to anthropomorphize, I'm sure that's exactly what led a friend to leave us with a beautiful figurine of a dolphin leaping from the ocean's surface when she and her husband moved from our community to Florida several years ago. The dolphin was her gift to us.

The tightly knit pod, she said, reminded her of the breast cancer support group where we all met. And that when one of our members - first Theresa, then Judy - sickened and ultimately died - we all pulled together, and brought our ill friends to the surface for air, so they might breathe easier, if only for a moment. We stayed with them, by them, around them, until there was nothing else we could do. Then water, life-giving and always mysterious, flowed in to fill the space.

In Loving Memory --
Judy Halinan, Denell Hilgendorf, Elizabeth McCready, Rachel Cheetham Moro, Susan Niebur, Monica Phillips, Anne Robinson, Theresa Walleye.

The term "Fearless Friends," was coined by Rachel Cheetham Moro in a tweet chat on January 23, 2010.  She died on February 6, 2012.  We will always miss her.