Blogging for the Terminally Ill

The days preceding my periodic CT imaging sessions to determine if my cancer is regressing (good), progressing (bad), or unchanged are often very difficult for me and many other cancer patients. Stressing about the results won’t change the outcome, but that doesn’t stop me from mentally exploring all of the various scenarios. There’s even a term for it – scanxiety – coined by fellow cancer survivors.

Humphrey suffering from writer’s block

I find that writing helps keep my mind occupied during periods of scanxiety. Even when I am writing about cancer, the process of organizing my thoughts or researching a topic online is a welcome distraction that helps me pass the time.

So, this morning, I decided to Google “terminal cancer blogs” to research what other cancer patients write about. I was looking for common themes among the multitude of cancers, not just my particular diagnosis. I was also generally curious how many “other” bloggers there are like me.

The exercise started innocently enough. Within 0.54 seconds, Google informed me of the approximate 580,000 search results. I clicked on the title of the first one that caught my eye – “Terminally Fabulous.” With a positive name like that, I hoped to find an inspirational blog.

Suddenly, I was engrossed in the life of Lisa Magill, a Brisbane, Australia woman who started her Terminally Fabulous blog in February 2016, three years after being diagnosed with an incurable rare form of stomach cancer at the age of 30. Ominously, the first thing I noticed upon visiting her blog was that the most recent post was from nearly a year ago (February 24, 2017). Only by following the link to the Terminally Fabulous page on Facebook did I learn that Lisa succumbed to her disease in early March 2017 at the age of 34.

Reading previous entries on Terminally Fabulous, I appreciated Lisa’s writing – full of humor, brutal honesty, and courage. In one entry, she referenced Emma Betts, a friend, cancer survivor and inspirational fellow blogger. Through her Dear Melanoma blog, Emma (like Lisa…) shared her cancer journey to help educate others of the importance of cancer awareness and protection methods needed to help prevent against melanoma. My heart sunk a little deeper after reading the opening text of the Dear Melanoma blog: “Hi, I’m Leon, Emma’s dad. By now I’m sure you’ve heard that Emma passed away in April 2017.” She was 25.

After visiting several more terminal cancer blogs from my Google search results, including Darn Good Lemonade, Anna Swabey: Inside My Head, Tina’s Journey, Cancer in Context by Debra Sherman and others, the grim common theme became clear: Terminal cancer indicates a disease that will progress until death with near absolute certainty.

Yes – of course, there are always exceptions (and I still “hope” to be one…). Take blogger Sophie Sabbage, diagnosed on October 13, 2014, at the age of 48 with Stage 4 terminal cancer – multiple tumors in her lungs, lymph nodes, bones and brain. According to a recent blog post from December 22, 2017, her brain scan showed EVERY tumor had gone except for an 8mm spot. She even states that her cautious oncologist called this “fantastic”. Twice.

What I learned is that more and more terminal cancer patients are placing their most private, personal journeys in this most public, impersonal domain we call the Internet. Take some time to read these brave stories and embrace their author’s vulnerability. They serve to remind ALL of us that our time on this planet is limited and some even provide inspiration to lead happy and more meaningful lives as a result.

I hope to provide an update on my CT scan results early next week, so stay tuned…

Cervical Cancer and HPV

What a relief that the weather for yesterday’s periodic commute to New York for chemotherapy was much warmer than the bone chilling, windy cold backdrop of the past several days. Even more pleasant was a punctual public transportation commute, which got me to my appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) on time. Work on the signals and tracks at NY Penn Station frequently delayed my trains in recent weeks, so I never know quite what to expect these days.

My blood counts were amenable to the scheduled dose of chemotherapy, which was infused as planned. My positive transportation karma continued and I was back home resting in Pennsylvania by mid-afternoon. No more treatment until after my CT scan later this month for an update on my disease status (queue “scanxiety”).

Traveling alone, I took time during my commute to listen to music on my headphones and catchup on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. This caught my eye, as cervical cancer and oropharyngeal cancer (tongue, throat, and tonsil – as in my particular diagnosis) collectively account for more than two-thirds of the cancer cases caused by high-risk human papillomavirus (HPV) infection. According to the CDC, more than 30,000 new cancers attributable to HPV infection are diagnosed each year.

HPV is the most common sexually transmitted infection in the United States. Nearly 80 million people — about one in four Americans — are currently infected and about 14 million people become infected with HPV each year. Nearly all sexually active people get infected with HPV at some point in their lives.

For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these individuals, HPV can cause changes in the body that can lead to the development of:

  • Cervical, vaginal and vulvar cancer in women;
  • Penile cancer in men; and
  • Oropharyngeal (the tongue, tonsils and back of the throat), anal, and rectal cancer in both women and men.

The good news is that HPV infections and the seven cancers attributed to them are highly preventable with available vaccines that protect against the high-risk HPV 16 and HPV 18 types responsible for 90 percent of HPV-related cancers. The bad news is that despite strong data showing the safety and benefits of the vaccines, the rate of vaccination in both sexes is disappointing. Across America, only 49.5 percent of girls and 37.5 percent of boys were up to date with the recommended HPV vaccination series, according to a 2017 CDC report. Interestingly, around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.

So, with PLENTY of room for progress in vaccinating both girls and boys against HPV, please schedule time to talk to your pediatrician now to eradicate this cancer-causing virus.

PS – There is undoubtedly a role for gender-specific cancer awareness activities, such as Cervical Cancer Awareness Month. From pink ribbons to professional sports apparel, breast cancer awareness advocates have done an amazing job spreading the word that October is National Breast Cancer Awareness Month. But each September, during National Prostate Cancer Awareness Month, the color blue doesn’t consume the country with the same verve. And reduced awareness correlates with less money*, as prostate cancer research receives less than half of the funding as breast cancer research from the American Cancer Society. On this note, perhaps it is time to at least consider “HPV-Related Cancer Awareness Month” or something gender neutral?

* Of course, correlation does not imply causation…

First Chemo of 2018

Early this morning, my youngest daughter Megan and I arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) to start round number seven of my current chemotherapy regimen (a combination of carboplatin and paclitaxel). What a fun way to welcome 2018!

Each treatment appointment is preceded by a blood test to look at the levels of various components (red blood cells, white blood cells, platelets, electrolytes, etc.). Not surprisingly, all of my counts were good enough to warrant treatment today as planned after a two-week break at the end of December 2017.

Michael and daughter Megan Becker in the chemo suite at MSKCC

Knowing today might be a bit crazy, I had scheduled an early morning appointment to try and get ahead of any delays. We arrived a few minutes before my 7:45am ET blood test and ended up catching the 12:20pm ET train from New York to return home. Everything went fine with treatment, although I don’t usually start feeling the side effects for a few days.

I met with my oncologist Dr. Pfister during today’s appointment. He discussed doing my next CT scan around the end of January 2018, which would be after the current chemo treatment cycle is finished. Depending on those results, he discussed maintenance treatment with just one of the two chemotherapies if the scan looks good. Otherwise, he might recommend switching to cetuximab (Erbitux©) if the chemo isn’t continuing to work. Either way, it looks like I’ll be coming to another key treatment decision point early in 2018.

The best news of the week was being able to spend New Year’s Eve celebrating with my wife, Lorie. Actually, “celebrating” might be a strong word–unless you expand the definition to include sitting on the couch watching Dick Clark’s New Year’s Rockin’ Eve with Ryan Seacrest and going to bed before midnight. But, we were together for yet another milestone. One that, frankly, I was quite surprised to see.

To my family, friends, colleagues, researchers, health care providers, members of the media and anyone reading this blog post–thank you for your interest in my cancer patient journey. I wouldn’t be here today without such a strong support network. Best wishes for good health, plenty of happiness, and much prosperity in 2018 and beyond to all of you!