W. Barry Jones

Survivor

Iconic phrases are just that, symbols of a specific, time and genre. “Boss, the plane, the plane”, “Book ‘em Danno”, “Up in the sky. It’s a bird, it’s a plane…etc.” “Who was that masked man?”, and from a more literary perspective, “Call me Ishmael.” Perhaps none is more evocative of the Boomer Generation than, “To boldly go where no man has gone before.” Despite its grammatical and gender specific idiosyncrasies, this describes the abduction that I must now, kicking and screaming endure. I refuse to call it a “journey”. That is something you choose, and look forward to doing. There’s nothing about cancer that fits those criteria.

I too am the lucky one-out-of-2,400 expected cases annually in the US of male breast cancer. It took me a long time to accept those words. Over a year past diagnosis and six months past treatment, it still sounds a little weird. Well, I’m now preparing to shout from the rooftops that, “Breast cancer is an equal opportunity disease”!

I was diagnosed at age 69. I had a habit of hanging by my arms from a “noodle” in the YMCA pool in order to help relax a severely damaged back (In retrospect, that 1989 L5-S1 spine surgery may have, ironically, saved my life.) Over several months I noticed a lump in my right breast where it rubbed against the noodle. Like most males, I assumed it was a fatty deposit and ignored it…until it started to ache. As it turned out, this was as unusual as it was fortuitous. My wife examined it and said it felt unusual to her.

So, on May 3, 2016, I saw my family doc. He was suspicious and sent me for a mammogram. On May 10, I underwent what many women, but few men, experience. The “squeeze” wasn’t as uncomfortable as I’d anticipated, but the wait for a sonogram was. You guessed it, the radiologist was also suspicious and 2 hours later, the sonographer did her thing. A half hour later I saw the attending physician who suggested a core biopsy, which he performed an hour later. Five hours after entering the center I returned home to a wife who thought Scotty might have actually beamed me up.

Another wait, this time for 6 days, when my GP called with the diagnosis, Invasive Ductal Breast Cancer. Shock! Disbelief! Fear! Anger! This does not happen to MEN. This cannot happen to ME!!!! Surgery was prescribed. Luckily (if anything about getting cancer can be so) I live near a world class cancer research facility with a world class staff. Fortunately, I had sufficient insurance to support my decision, so Roswell Park was a no brainer. I got even lucky having Dr. Helen Cappuccino and Dr. Ellis Levine as my surgeon and oncologist respectively. May 31 (2 days after our 24th wedding anniversary) I was wheeled out of surgery no longer bilaterally symmetrical. The good news was that the sentinel lymph nodes were clear. The bad was that on June 13, my surgeon said that the cancer had jumped the sentinel nodes and three downstream nodes were affected. One of them was breached. June 21 and I was back in the OR for a complete lymphadenectomy of the right axilla and arm. While healing from that, drain tubes once again dangling, I developed lymphedema. Two surgeries in less than two months, and a swollen arm to boot!! Given that both tumors were high-risk (Wait… aren’t good things supposed to come in pairs?), that the surgical margins were not clear and that a lymph node was compromised, Dr. Levine recommended chemo followed by radiation. He at first recommended Taxotere as part of the chemo, but this can cause peripheral neuropathy which, as a violinist was unacceptable. I asked if there were another protocol, perhaps somewhat less effective, but without the risk. I’d rather be playing my fiddle for as long as I can even if that time were to be somewhat reduced. He agreed and decided on a Gen 1 protocol cytoxen/methotextrate/4-flurouracil every 3 weeks for 8 sessions. That followed by daily radiation for 8 weeks. I tolerated chemo pretty well with little nausea, though the dreaded constipation was very much present. My hair thinned considerably, but at least I kept it and I didn’t lose my sense of taste, though I did experience some minor “metal-mouth”. Again, “lucky”? I was initially more effected by the steroids, which disrupted my sleep and energized me to a point of mania. That’s when I rearranged the garage and bought a convertible! Eventually fatigue settled in and it was then that CHEMO-BRAIN came a-knockin’. I lived for two weeks in a dizzying slow-motion fog that was worrying enough for my doc to order a brain MRI. Well contrary to common belief, I do have one, a brain that is. And even more wondrous, it is normal, well at least from an anatomical perspective. Now if anyone says that radiation is not such a big deal, don’t believe them. By the time I was done, the affected area was red, sore and itchy. I doused myself with moisturizer and was stained purple with gentian violet (yep, the same thing I used to stain cells when teaching biology.) Nothing, beyond ending the treatments, worked.

All during this time I was periodically emailing an extensive list of friends and relatives who provided unlimited encouragement and support. I connected through the Komen foundation with another man who was a 14-year survivor, and through the internet, with the very editor of these stories. I armed myself with research and found this community of men, survivors who are willing to share their stories (Male Breast Cancer Coalition, MBCC). Yet, without my wife, I could not have gone through this process well at all. She was my nurse, driver, secretary, “memo pad”, but mostly my best friend, confidant and lover. A strong support network is almost as important as chemo in this battle. Well, I’m now more than a year past diagnosis and for the moment am clear! This is when the real healing begins, the return to a “new normal.” I’m on a life-time daily dose Tamoxifen, as I was “lucky” for my tumor to have been ER+ and PR+, and am tolerating it well. I’ve intentionally trimmed down from 220 lbs. to 188 lbs. in response to an onset of chemo-induced Type II diabetes. I completed the “Live-Strong-At-The-Y” program for cancer survivors. I’m continuing to, exceedingly slowly, reduce the lymphedema with therapy and I have returned to Tai-Chi classes. I’ve reduced my A1C from 6.7 to 5.7 and my LDL to 99. My wife is cooking me healthy meals and I’m exercising on a regular basis. I’m also becoming an advocate for MBCC awareness in my community. But there is always the niggling fear of recurrence or metastasis. And we MBCC blokes have the added “benefit” of an expected 30% increase in the risk of contracting prostate cancer. I’ve been told that my prospects for long-term survival are good, but as a survivor, you either die with cancer or because of it. All I can do is appreciate and be thankful for all that I have and let tomorrow fend for itself. Where there is fear, there is no hope. Frankly, I choose the latter.