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 awkward 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 fatigue, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding critical 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.

10 thoughts on “Continuing with Chemotherapy (and Blogging)

  1. Wishing you luck and continued strength. Your writing, and attitude, are so honest and fair to your caregivers, your audience, and yourself. Keep up your clear-headed approach and priorities. You are an inspiration, and your writing is a pleasure to read.

      • I saw another reply of yours wondering who reads the blog. I have the same cancer. Tonsil, found first in neck node. Had tonsils and 43 nodes removed with clean margins. Now halfway through radiation.

  2. I think writing about cancer is both cathartic and helpful to others. No one knows what to do or say when it comes to cancer. I think by brining it out in the open and talking about the very real and often difficult issues involved, you hopefully help people get in touch with their own humanity and compassion, but ideally, help them communicate with their friends facing a cancer journey. Cancer can be pretty lonely. It doesn’t have to be.

  3. MedImmune MEDI0457 in combination with durvalumab (MEDI4736) successfully completed the phase 1 safety review portion of the study and has advanced to the phase 2 efficacy stage of the trial for Head and Neck cancer caused by HPV. Looks like this is perfect trial for you. Go for a chance of cure. Recruiting now in the Bronx, perfect timing.

  4. I treasure your clear-headed, analytical approach with this blog. As I have told you, I experienced the same cancer and same initial treatment as you did, about one year after you. My first post-treatment scan was “clean,” just like yours was. As you know, if this cancer recurs, it is often a year or more after completing treatment, so more scans are to come. I hope for continued positive results, but I am devoting some mental preparation to the 20% possibility of a recurrence. If it comes back, what will my life look like? What kind of treatments might I pursue? How will I keep a positive attitude? Your blog is providing extremely valuable answers. I pray for you and your family always. I cheer for you. Above all, I thank you for using social media to reach out and touch so many lives.

    • John – I can’t thank you enough for your interest and kind words. When I hit the “publish” button on a blog post, I always wonder – who reads the material, why are they interested, does it benefit anyone? And, with chemo brain, does my writing even make sense anymore? But, I’m glad that my blog is valuable to you and thank you again for the complements. Most importantly, my thoughts and prayers will be for you to have clean scans going forward for many, many years! Please keep in touch!

  5. Your last 2 paragraphs were absolutely heartbreaking but also a great insight into one’s perspective going through this. I was just a young kid when my mom was doingchemotherapy and I was unable to fully grasp what she was possibly going through. Thanks for sharing!

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