In retrospect, the month of April was a blur. Between selling our former home, purchasing a new home, and my transition to home hospice care, there was a lot to do and consider. Through the fantastic generosity of family and friends, along with a lot of effort from Lorie, amazingly everything went smoothly.
It was tough for me to be a spectator for most of the events mentioned above since I’m restricted from physical activity due to cancer invasion of my spine. As just one example, I’m not supposed to lift more than 5-pounds or risk further fracture.
Making matters worse, I still don’t look like a terminal cancer patient. Other than seeing the hospital beds in our house, I’m sure that some of the people helping us pack questioned why I wasn’t lifting a hand with the move. Whether this was true or not, it affected me emotionally by adding to my depression. I wanted so badly to help.
As mentioned in a recent tweet, what’s been my biggest surprise since being diagnosed with terminal cancer? The people you thought you could count on but were wrong and the people you least expected to be there but rose to the occasion. So, for everyone who contributed financially, physically, or otherwise during the process — thank you from all of us!
I am also frequently asked whether or not I will be receiving further cancer treatment. In this regard, hospice stresses patient “care” over “cure”. The goal is to provide comfort during the final aspect of life. Therefore, no — I will not be receiving further treatment, such as chemotherapy, radiation, or participating in clinical trials. My ideal scenario, as described by Dr. Robert M. Wachter in a recent opinion piece for The New York Times is “death with dignity and grace, relatively free from pain and discomfort”.
Fortunately, our dog Humphrey did his best to reassure Lorie that he’d take good care of me as she returned to work after spring break. More comforting to her, however, are the weekly visits from hospice to monitor my vitals, change the bandage around my patient-controlled analgesia (PCA) device, and adjust my various medications as appropriate. I feel like we’ve made good progress in each of these areas over the past month and life is slowly returning to a “new normal.”
One remaining issue relates to sleeping through the night. The beds provided through hospice are adjustable and comfortable, but I tend to wake up in the early hours and then have trouble getting back to sleep. Accordingly, my nurse Linda suggested switching from Ativan (lorazepam) to Klonopin (clonazepam). Both medications are sedatives that can treat anxiety disorders, but they have differences in how long they work. Klonopin has a slightly longer half-life than Ativan, which may help me sleep through the night.
In other news, I decided to close my Facebook account this week (for a variety of reasons). Going forward, this blog and my Twitter account will serve as the best ways to keep track of my cancer journey. Sign up for new post alerts here using your email address to be notified each time there is a new blog entry.
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.
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.
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!
Last week, I underwent my first CT scan since stopping chemotherapy in March 2018. It would have been surprising for the tumors in my lungs and spleen to remain unchanged in size during this period. Nonetheless, I admit to secretly hoping that there was little or no growth.
Instead, all of my existing tumors roughly doubled in size. In my lungs, several nodules that measured one centimeter in diameter are now two centimeters. Cancer in my spleen grew from two centimeters to four centimeters.
A few new spots also appeared. In particular, in the mediastinum and thoracic nodes near the heart, thymus gland, windpipe, and large blood vessels.
In other words, cancer resumed its growth in the absence of chemotherapy.
However, with a taste of life without the toxic effects of chemo – I don’t want to go back. A point that I made in the recent Forbes article and video The Art of Dying.
In keeping with that theme, I’ve decided to remain off treatment. The obvious result is that cancer will continue to grow unabated. It wasn’t an easy decision, and it wasn’t made in a vacuum.
During today’s appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, we discussed a lot of topics: How quickly will my disease progress? When will my quality of life diminish? How long until I die?
All valid questions, but each very difficult to answer. I already witnessed the perils of making such predictions last summer when I didn’t expect to see my 49th birthday. And yet, here I am – having just enjoyed the best several months since first being diagnosed in late 2015.
When my treatment changed from curative to palliative intent, I knew that cancer would likely claim my life. It didn’t stop me from living. In fact, in many ways it made me appreciate life even more.
Some readers will offer battle/combat analogies. “You can still beat this.” “Keep fighting.” “Don’t give up.”
Fighting words may help some people, but I prefer to embrace acceptance. My patient advocacy efforts, such as raising awareness for the human papillomavirus (HPV) and various cancers it can cause (including mine…), are not made more or less successful based on my disease outcome.
Throughout my life, I did things my way (cue Frank Sinatra). And I don’t plan on changing that now. I feel good and plan on enjoying it for as long as it lasts. Quality, not quantity, of life, is what matters most to me now.
Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.
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. 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.
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.
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.
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.
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…