Continuing with Chemotherapy (and Blogging)

In my prior post, I referenced that more and more terminal cancer patients are placing their most private, personal journeys in this entirely public, impersonal domain we call the Internet. Among the blogs about fashion, food, home design, travel, and others, numerous blogs about severe disease and dying have appeared in recent years.

Personally, I find that writing a cancer blog is cathartic – and I’ve been doing it for more than two years now. It’s a great way to share updates and information quickly and efficiently to others who are interested in your health. Blogs and participation in other online patient forums also make the experiences of cancer illness publicly visible, provide alternative voices to that of the medical expertise, and challenge the traditional patient-doctor relations[1]. What a remarkable era for patient advocacy.

But maintaining open and honest communication with your health professionals is an essential part of the cancer patient’s care. Doctors, nurses and patients work best together when they can talk honestly and openly with one another. In this regard, it is essential that patients avoid blogging or posting anything on social media that could jeopardize this relationship. When in doubt, discuss material and images that you plan on blogging with them in advance – especially when the information pertains to participation in an ongoing clinical trial where sensitivities to confidential data may exist.

Michael Becker and David G. Pfister, MD

So far, healthcare professionals have embraced my public visibility. For example, I first met my incredible medical oncologist, Dr. David G. Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), in December 2015. Since that time, I published my memoir, more than 75 cancer blog posts, and three opinion editorials in various media outlets. It’s probably safe to say that I’ve been among his more “uniquely” visible patients during the past two years. But Dr. Pfister and others at MSKCC, along with my team at the National Institutes of Health (NIH), have mainly been accepting and supportive of my blog, book, and photojournalism. And, for the first time, my wife Lorie was even able to snap a quick photo of me with Dr. Pfister this week that I will treasure.

On the topic of this week’s appointment, we reviewed the CT scan results from last Friday’s imaging session. As updated briefly via social media, the results were favorable – stable disease (there were no new sites of disease, and the existing tumors stayed about the same size from the prior scan). Growth in the current tumors or new sites of disease would indicate disease progression and likely necessitate switching therapies. Since that wasn’t the case, and since I’ve handled chemo well with no neuropathy or need for growth factors, the plan is to continue with my current chemotherapy regimen. It consists of a four-week cycle starting with carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. I’ll have two more cycles and then do another CT scan around the second week of April 2018.

After the meeting with Dr. Pfister, I started my eighth cycle of this chemo regimen and was back home by late afternoon. The purpose of this treatment is palliative – to keep the tumors in my lungs and other organs from growing to a point where they cause pain, breathing difficulty, and other issues. It is different from care to cure your illness, called curative treatment.

When treatment is palliative, some patients may feel uncomfortable asking their doctor, “How long do you think I have to live?” The truth is that this question is often uncomfortable for doctors too. Nonetheless, it is a question on the mind of many terminal cancer patients – including me.

Every patient is different, and a statistical prognosis is just an estimate, not a firm prediction. For example, last summer I was in terrible shape (two chest tubes, progressive disease, blood clot and bleeding issues, rapid heart rate requiring a stay in the ICU, etc.). The prognosis at that time was grim, and I wasn’t expected to live more than a few months.

But, effective treatments can sometimes dramatically improve a person’s well-being and even survival. After starting chemotherapy again, cancer regressed, and both chest tubes were removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. I celebrated my birthday, Megan’s birthday, holidays, and welcomed the New Year. It’s now likely that I will be there for Lorie and Rosie’s birthdays next month and even our 26th wedding anniversary in March. I have been given additional precious time.

My disease is still likely incurable, and the current statistical prognosis indicates a median life expectancy of less than one year. I suffer from chronic fatigue, shortness of breath, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding important personal plans and life decisions.

I believe that blogging about life with a terminal illness can offer unique insights into how it is to live with cancer and to face the final phase of life. Hidden away and sequestered, removed from everyday experience, death has made a mediated return to the public sphere through digital and networked media[2].

References:

[1] Andersson Y. (2017 Jan 1). Blogs and the Art of Dying: Blogging With, and About, Severe Cancer in Late Modern Swedish Society. Omega (Westport).

[2] Lagerkvist, A. (2013). New Memory Cultures and Death: Existential Security in the Digital Memory Ecology. Thanatos, 2(2), pp. 1-17.

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 many other cancer patients and me. 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 the writings of other cancer patients. 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 about the importance of cancer awareness and protection methods needed to help prevent melanoma. My heart sunk a little more profoundly 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 public and 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…