torn and frayed…

And his coat is torn and frayed,
It’s seen much better days.
Just as long as the guitar plays
Let it steal your heart away,
Let it steal your heart away.

– Mick Jagger & Keith Richards, Torn and Frayed

1:30 am

Since this blog is part health confessional, part personal purging of tales old and new, some sordid, some enlightening, I thought I might begin by sharing that the march towards February 28th (next MRI) slogs ever onward. My life, in between the laughter, tears, fear and anticipation about all that is yet to be, will be measured by three-month increments, when the MRI’s are held and we check in on the state of affairs within my brain. Most of the time, I simply carry on. As the dust from this dust storm settles, and the chaotic din of the initial event is filed away in the memory bank, the realities of simply finding a way to live with cancer have proven to be a physical and emotional mountain of a challenge. Frighteningly, particularly in the past several months, several dear friends have also been diagnosed with cancer, two of them with dire prognoses. As I dig in and continue my late night conversations via Skype, phone and email with leading research scientists, doctors, and others on the forefront of the resistance movement (Occupy Cancer?) I return to a phrase shared by a leading professor of neurosurgery and neuroscience who almost never, ever, uses the “C” word but instead refers to each of our own “personal hyperplasia” implying that cancer has become too much of a catch-all term fraught with generalizations and misinformation which only adds to the confusion and fear. Cancer is indeed a very personalized and unpredictable affair.

In the meantime I, along with many other of my peers, experience the slings and arrows (as well as the joys) of day-to-day living. When I was young, I would hear relatives and family friends in conversation and thought “when I’m that age, I hope my friends and I never spend our time talking about what ails us. Surgeries, breaks, tears, exams, tests, sores, medicines, and the like. How sad and boring! That I now have a pill box containing seven compartments for each day of the week only conjures up memories of my late grandmother Ethel, standing before an old porcelain sink in her fuzzy slippers and nightgown, doing the math of medicine.

Now that I am that age, that is to say the same age as my parents were when I deemed their topic of conversation dull, my friends and I do, in fact, have many other things to speak of: children, community, music, home improvements, cars, technology, arts, skiing, hiking, bicycling, politics, religion, (which, sadly, seem to be one in the same these days), concerts, food and of course, sex. (see politics and religion) The topic of health, however, continues to worm its way into more and more conversations, taking center stage as we all age.

The Thrill of Victory, the Agony of De Feet (sic)

Such conversation was evidenced by recent discourse among friends. On a recent nordic ski weekend at the Craftsbury Outdoor Center in Craftsbury, Vermont, where we have gathered with other families for many years, eating excellent family-style meals, staying in renovated dormitories and skiing into the night in what the late, great Vermont Governor Aiken referred to as “God’s Kingdom” or the “Northeast Kingdom,” we shared what has become an annual review of our collective aches and pains.

One friend had a “TENS” unit, strategically delivering mini-shocks to interrupt and confuse the nerve pathways which inform pain, to his broken collarbone. Among the crowd, four of us had cheilectomies performed on our large toe joints due to bone spurs (osteophytes) from what is sometimes called “skiers toe.” The injurious bone is simply carved down to ease the friction and irritation of regular movement. Old injuries rearing heads, new injuries added to the list. Bad falls and wipe-outs including one entanglement in a barbed-wire fence.  And yet we all forge ahead, driven by the inspiring beauty of the snow-covered Vermont back-country, the joy of being together and the aim to stay fit.

Between us all, we had created a very fine palette of injuries: ruptured tendons and ligaments, broken collar bones, arthritis and many other sports-related injuries as well as the more mundane events such as slipping on the ice. And then there were the other discussions, among them the indignity of prostate and cervical exams and the forced cleansing before a colonoscopy for which I am now preparing. (I have to drink a GALLON of that stuff? I can’t EAT?!)

I supposed to have one of these every year but time slipped away and it has been several years. Normally not needed until the time when one reaches their 50’s,  I have been identified as someone who carries the Lynch syndrome HNPCC gene (Hereditary nonpolyposis colorectal cancer) which is “an autosomal dominant genetic condition which has a high risk of colon cancer[1] as well as other cancers including endometrium,ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin. The increased risk for these cancers is due to inherited mutations that impair DNA mismatch repair.” (Source:Wikipedia)

I do hope Dr. Rawls is there to help…

And woe to Homer’s doctors…

Thanks in part to the work of famed news anchor Katie Couric, her husband, the late John Paul “Jay” Monahan, and their family, millions of people are now getting regular colonoscopies, resulting in a marked downturn of deaths from colorectal cancer. In 1998, when Jay, a father of two and noted attorney who also provided legal analysis for MSNBC, NBC News and CNBC, passed away from colorectal cancer at the age of 42, his wife and the family wanted to ensure that this disease would not kill more unsuspecting people and did so by and raising awareness of the importance of screenings. Katie actually held a live colonoscopy on national television, a landmark event in which the term “Couric Effect” was coined. Colorectal cancer is the third leading cause of death among men and women in the United States with 140,000 new cases predicted this year, resulting in about 50,000 deaths in 2012. These statistics continue a downward trend thanks to Jay’s legacy. The Jay Monahan Center for Gastrointestinal Health at New York Presbyterian Hospital/Weill Cornell Hospital stands as testament to Jay’s life and his faithful friends and family.

So what about brain cancer? Certainly every cancer needs its 15 minutes of fame, at least. Susan G. Komen (Planned Parenthood debacle not withstanding- shame on you Karen Handel, Nancy Brinker and Cliff Stearns) has given, thankfully, breast cancer countless hours of “fame” resulting in the prolonged or saved lives of thousands, if not more, women.

I have come to believe, based upon my own ongoing research and conversations with leaders in the field of brain cancer, that we are nearing the top of the mountain. Rather than treating only the symptoms, we will be able, using bio-markers and looking at cancer through the cellular, genomic lens, to attack mutations at the very earliest stages of cell development.

And what of the title “Torn and Frayed?” Oh yeah, I have completely shredded both of my shoulders with complete rotator cuff and shoulder tears. The left side popped from simply rolling over in bed (simply!) and the right shoulder from falling while ice-skating. I am not unconvinced that my years of asthma medication (steroidal) and the dexamethasone after surgery did not contribute to muscle weakness, leaving me susceptible to tears. This merely adds to my laundry list: two torn knees, one ruptured quad muscle (unrepaired) and one ruptured bicep tendon.

The “Being Patient with High-Maintenance Patient” award certainly goes to Barb who has endured more than her share of hearing my moans and complaints of aches and pains and until recently, my high-level of irritability which has since undergone a sea-change as I realized, however insidious, I was slowly becoming even more difficult to live with than I was even before the calamity and was going to scuttle everything we had worked towards with my bouts of moodiness and unpleasantness. I had to change and re-focus on the positive. While I do not run away from or deny the negative, I am working to channel those negative ions into a safer place.

And while the pain from these tears is often excruciating (I bought my own “TENS” unit, helping me get through the night) I take it in stride. “Bring it on! Demon Body Spirits!” I shout. If I can deal with cancer in my brain and chronic headaches, who cares about a few more tears here and there…I can still ski and bike. My javelin career? That’s finished. I have miles to go, however, before I sleep. Soon, it’s off to California with Hannah and Libby for the August vacation that wasn’t…”hanging ten” off the shores of La Jolla may need to be reduced to hanging two or three…

Meanwhile, Lewis Black provides me with a smile thanks to one of his many apoplectic rants:

And a nod to Keith and Mick….Torn and Frayed

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About moosevt

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