Milestones

After completing the third and final palliative radiation therapy (RT) session this week, I was finally able to return home from Memorial Sloan-Kettering Cancer Center (MSKCC) after being admitted on March 8, 2019. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Hopefully, the RT will also provide pain relief in the coming days/weeks and reduce my dependence on the other medications.

In view of the relatively rapid cancer progression and difficulty in getting my pain under control, I made the decision that it was time for hospice. While many people believe that hospice care is only appropriate in the last days or weeks of life, it can be beneficial as much as 6 months before death is anticipated.

Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. With the press of a button, I can activate the fentanyl pump when/if the pain manages to break through the relief being provided by methadone, acetaminophen, gabapentin, and other oral analgesic drugs.

A hospital-style bed was waiting for me in our family room when I arrived home. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. It was a very smooth transition.

Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. Why was I awake so early? Perhaps it’s from the stimulative effects of the steroid medication. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA.

My mind drifts to the principle of Occam’s razor: that the easiest explanation tends to be the right one. My mind is reeling over the fact that today marks another beautiful milestone. One that I didn’t think I would live to see, but am so blessed to witness. Today, Lorie and I celebrate our 27th wedding anniversary (Figure 1).

Many people are thankful to witness the dawn of a new day. My father-in-law used to say that any day he could wake up and tie his own shoelaces was a good day. I couldn’t relate to the sentiment at the time, but now as a terminal cancer patient on hospice—it makes perfect sense.

Consider the plight of people living with Alzheimer’s disease (AD) and the impact of this awful condition on their caregivers. As time passes and the disease progresses, memory problems worsen. The AD patient may fail to recognize close relatives, which can lead to irritability, outbursts of unpremeditated aggression, or resistance to caregiving.

Similarly, cancer can induce cognitive impairment. This can be attributed to the direct effects of cancer itself and/or due to the adverse effects of the treatment(s) given for the disease. Most studies have identified attention, memory, and information processing as the most common cognitive domains impacted by cancer and cancer-related treatments.

I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. Happy Anniversary, Lorie!

Michael and Lorie Becker, March 29, 1992
Figure 1: Michael and Lorie Becker, March 29, 1992

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 The Death ProjectDarn 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…