First Vacation

The cover photo of my book, A Walk with Purpose, is an image of me hiking on the Iceline Trail located near Field, British Columbia in Yoho National Park. Linda Becker took it during our first family trip to the area back in September 1998.

Photo of my parents, Linda and Ted Becker, with baby Rosie taken during our 1998 family trip to Lake Louise.

When I decided to take a break from chemotherapy treatment in March 2018, my parents generously offered to include us in a trip they already had planned. Unfortunately, Lorie and our daughters weren’t able to go due to a variety of logistical issues.

It’s been nearly 20-years since that initial visit, but last Saturday I returned to Lake Louise, a hamlet in Banff National Park in the Canadian Rockies. I knew a week-long vacation with my parents, grandmother, and aunt would be therapeutic—and I wasn’t disappointed.

The trip was my first vacation since being diagnosed with Stage IV cancer in late 2015. Moreover, for the first time, the word “cancer” didn’t enter my thoughts with its usual frequency. Instead, I was able to relax and finally appreciate what people mean when they say “live in the moment.”

With the deleterious effects of chemotherapy fading, my appetite and stamina improved enough to feel confident in making the journey far from home. My hair has also returned, although I don’t recall it being quite so thin or silver. My eyebrows have grown back, and my eyelashes are slowly recovering as well. So, I no longer look like a fetus when I remove my glasses—which makes me happy.

Lake Louise looked very different from our prior visit during the autumn season, but still quite beautiful. The Rocky Mountain Fir, White Spruce, Tamarack Larch, and other native trees had green foliage instead of the yellow hues I recall. The mountain tops were blanketed in more snow. Most of the lakes were still frozen, and many trails were closed due to avalanche risk (including the Iceline Trail).

Fortunately, we were blessed with sunny skies and daily high temperatures above 70 degrees Fahrenheit (21 Celsius). A short-sleeve shirt was comfortable during most of the trip, although it seemed out of place given the wintry backdrop.

Aside from nature’s splendors and the fresh, crisp air, it was nice to spend quality time with my family. Nowadays, we mostly see each other around holidays, birthdays, and other events. However, the trip provided ample opportunity to converse without the hustle and bustle of food preparation, cleanup, etc.

It was one of the most prolonged periods of time away from Lorie and our girls, so I’m happy to be back home now. Next month, I will have my first CT scan since stopping chemotherapy, and it will be interesting to see how cancer has behaved (or not) during my respite. Regardless, I’m glad that I took some time to simply enjoy life and thankful that my parents made it possible.

PS – I placed a selection of photographs from the trip in a separate gallery that can be viewed by clicking here.

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Second Edition

In January 2017, I first started writing A Walk with Purpose. It was quite an undertaking. To make the endeavor more challenging, I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. With great urgency, I completed and published the first edition by the end of April 2017.

In October 2017, I released a slightly updated version. Since then, however, a lot has changed. Quite a lot, actually. Aside from my cancer journey, I’ve grown both as a writer and as an individual.

So, I recently dusted off my keyboard and began writing the second edition. My pup Humphrey was not amused that I spent many, many days locked in my home office writing again. But, I’m pleased to report that the “new” paperback and Amazon Kindle versions are available as of today (click here). Coincidentally, published almost precisely a year after the original release.

The second edition of A Walk with Purpose is mostly a rewrite. The ending reflects my situation as of the current day. Some text was removed to make room for newer information. Spelling and grammar checked (and rechecked). And much more.

I’m very proud of the second edition. It’s finally the story that I wanted to tell.

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Metaphors of Spring

One thing cancer has taught me is to seize even small moments to enjoy being alive. Today’s beautiful spring weather made it irresistible to take our Golden Retriever, Humphrey, for a walk at nearby Tyler State Park. I had plenty of other things to do, but surely they could wait. Cooler temperatures and rain were forecast for the coming days.

I witnessed so many metaphors for life, death, rebirth, and hope during the walk. And while I’ve been to the park numerous times, it was refreshing to view the landscape through a very different lens.

I came across a pair of mallards wait patiently for eggs to hatch. I looked at barren trees wondering if they were dead or alive in the absence of greenery. Bright yellow and purple colors appeared out of nowhere among a sea of dead grass and branches. I saw the pure happiness of our pup, who was excited just to be outside and experience the scents of the season.

While it’s been a long, cold winter, the arrival of spring signals relief. Flowers bloom, leaves grow, and nature comes alive again. Similarly, after much cold and suffering, my body and mind are starting to come back to life during a recent reprieve from toxic treatment.

And although the flowers start to bloom again, there are still chilly mornings and evenings that serve as a stark reminder that winter only recently passed. Summer is yet to come, but we’re not there yet. Today was just a glimpse.

Cancer survivors often worry about things to come. Nature, however, appears immune to this concern. The budding leaves and flowers don’t seem worried they won’t make it to blossom. The pair of ducks didn’t look panicked that they will find ample food and successfully raise their young. Nature didn’t appear to have a “plan B” if things didn’t work out this time. Nor do I.

Yes, today I appreciated spring’s arrival, and it brought me great happiness. More importantly, it made me anticipate the days ahead. The chance to explore new ideas and opportunities. An opportunity to start over and reinvent once again.

The Pause that Refreshes

For the past few years, I’ve received three separate cancer treatments with little reprieve from many of the associated toxicities. This month, I finished my ninth cycle of therapy – a combination of two chemotherapeutics (carboplatin and paclitaxel). The chemotherapy has significantly reduced the size of tumors in my lungs and spleen, but they have not entirely gone away.

This week, I had my periodic CT scan to assess whether the cancer is progressing, regressing, or continuing to remain stable. The positive results, which came today, show no new metastases (the spread of cancer) and unchanged disease in my spleen and lungs since my last CT scan from January 19, 2018.

Michael Becker’s CT scans from June and December 2006, which show the initial progression of disease in both lungs.

After a great deal of consideration, I have decided to take a well-deserved break from treatment. It will allow me to recharge, improve my quality of life, and even allow me to travel and hike. In a few months, I’ll have another CT scan to see how my cancer behaved during the break. I hope that it remains stable or perhaps progresses slightly, although anything is possible during this period. I still recall how quickly I went from “no evidence of disease” to the progression of disease in both lungs and spleen (see accompanying image).

I’m quite proud of everything that I’ve accomplished since my initial diagnosis back in December 2015. I wrote and published my memoir, significantly raised awareness for the human papillomavirus (HPV) and its link to six cancers through numerous articles, radio, and television interviews, authored more than 80 blog posts, vehemently opposed the Right to Try Act, and even published a collection of my photography work.

I believe that my current “walk with purpose” as a patient advocate is far from finished. But with spring and summer around the corner – I want to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy.

The title of this post reflects the 1929 slogan used in advertising for Coca-Cola. It takes on special meaning for me, as I hope that this pause in therapy helps me heal both physically and mentally.  And that would indeed be very refreshing.

‘Right to Try’ Legislation is a Trojan Horse

The House will vote tonight (March 13th) on a revised Right to Try Act that was unveiled over the weekend. On a positive note, the new House version appears to reflect some changes FDA Commissioner Scott Gottlieb recommended in October testimony before the House Energy and Commerce Subcommittee on Health regarding a previous version of the bill that passed the Senate by unanimous consent last summer. But the new bill is still nothing more than a Trojan horse positioned as the “first step on a longer path to push the Food and Drug Administration (FDA) to loosen up on its oversight.”

Proponents of Right to Try know precisely how to wage an effective public relations war by tugging at people’s heartstrings. They tout grim statistics, such as the fact that over 600,000 Americans with cancer are projected to die in 2018 – supposedly because they are waiting for access to experimental therapies that haven’t yet been approved. Pitchforks and torches in hand, libertarians use the FDA as a scapegoat for blocking patient access to a mystical treasure trove of investigational treatments.

Politicians and other opponents of Right to Try have been quiet or slow to act. This is because a lack of support for Right to Try can be perceived (albeit incorrectly…) as not being sympathetic to the needs of terminally ill patients. Encouragingly, nearly 40 patient advocacy groups argued that Right to Try would “likely do more harm than good” in a letter sent to House leaders of both parties last month.

The fact remains that under existing regulations, patients can already seek expanded access, sometimes called compassionate use, to experimental therapies that are currently being studied for safety and effectiveness but that have not yet been approved by the FDA. For the past decade, the FDA has received approximately 1,000 such requests for expanded access each year. But with more than 600,000 Americans dying each year from cancer alone, Right to Try supporters argue that red tape and government regulations must be restricting access to promising new treatments for the other 599,000 patients. Hence their desire for an alternative parallel pathway that eliminates these barriers.

However, two key steps are required before the FDA even receives a request for expanded access, which demonstrates that the FDA isn’t the logjam. First, a physician must certify that the patient seeking expanded access has exhausted available treatment options and is unable to participate in a clinical trial involving the desired experimental drug. Second, the physician contacts the drug company developing the investigational drug to ask permission to test the treatment. Assuming that the drug company agrees, the physician then completes and submits paperwork to the FDA. At this point, more than 99 percent of such requests are approved within days (24-hour turnaround for emergency cases), and the FDA even suggests important changes approximately 10 percent of the time to help improve patient safety. Nonetheless, the Right to Try Act being considered by the House eliminates this critical FDA oversight.

Beginning in 2014, Right to Try has now been signed into law in at least 38 states. FDA regulations cannot preempt state laws that preserve constitutionally protected rights, such as the fundamental right to life and medical self-preservation (e.g., the legalization of marijuana in individual states while still illegal under federal law). And yet, there is scant evidence that patients have successfully accessed investigational drugs through state Right to Try programs who wouldn’t otherwise be eligible under the existing expanded access program. This provides further support that the FDA isn’t the bottleneck.

Since the FDA clearly isn’t the problem, why are Right to Try supporters so intent on creating a ‘parallel pathway’ that excludes them? Why not collect more data to understand exactly why there are only 1,000 requests for expanded access each year? More importantly, if Right to Try is the solution – why hasn’t it been successful in state programs over the past several years?

The simple truth is that physicians and drug developers understand better than most the concept of “first, do no harm” that is attributed to the ancient Greek physician Hippocrates. In the case of cancer drug development, the probability of progressing from Phase I to FDA approval is only 5 percent. Accordingly, if all 600,000 terminally ill cancer patients received access to experimental treatments under Right to Try this year, only 30,000 would likely benefit. The other 570,000 patients could suffer toxicities that hasten their death, severely diminish their quality of life, and lead to uninsured medical expenses.

While Right to Try is being positioned as pro-patient, in reality, it’s nothing more than a libertarian Trojan horse designed to weaken the FDA. And once this dangerous precedent is set, I fear it could easily be expanded to include patients with less severe diseases.

No one, especially myself as a terminal cancer patient, wants to deny patients the right to receive potentially beneficial drugs. We already have that right today. Our current expanded access framework is meant to protect patients, and the FDA has a program that approves nearly 100 percent of all expanded access requests it receives. My sincere hope is that the House votes today to put the safety and best interests of patients before politics.

Whirlwind

The past week is a blur. It started last Saturday with the airing of a national television segment on CBS during both their morning and evening broadcasts. Reported by Dr. Jon LaPook, Chief Medical Correspondent for CBS News, the show highlighted the recent rise in head/neck cancer in men due to “oral” human papillomavirus (HPV) and featured my story as an example. Special thanks to everyone who played a role in creating this important segment! A replay is available below:

On Monday, I traveled to Washington, DC via train to speak at the Rare Disease Legislative Advocates 2018 Legislative Conference in the session titled, “Right to Try – Is it a Solution?” I haven’t been shy about my cynical perspective on this pending legislation. You can learn more by reading my opinion article on the topic (click here) and listening to a replay of my interview with NPR’s Scott Simon (click here).

Panel session titled, “Right to Try – Is it a Solution?”

Tuesday morning marked the beginning of my ninth cycle of chemotherapy at Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC, which will slow me down a bit. Recall that each chemotherapy cycle is four weeks, beginning with both 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. Towards the end of March, I’ll have another CT scan to determine if my disease is still stable or progressing. In this regard, I’m hoping March indeed goes out like a lamb!

Michael Becker receiving chemotherapy at MSKCC on 2/27/18

In the meantime, I’m participating in several additional media opportunities to help tell my story and create more awareness for HPV and its link to cancer in both men and women. Interestingly, the International Papillomavirus Society (IPVS) has declared this Sunday, March 4th as “International HPV Awareness Day” to promote awareness of and education around HPV infection, how it spreads, and how HPV infection and the cancers it causes can be prevented. Click here for more information.

Just A Walk

Finally. The type of day that begs you to go outdoors. Sunny and warm, with just the hint of a breeze. Time to go outside and shake the winter blues. Just a walk; no purpose this time.

Usually, I would have traveled to NYC today for chemotherapy treatment at Memorial Sloan-Kettering Cancer Center (MSKCC). However, my recent hospital stay due to low white blood cell counts led my oncologist to postpone treatment for an extra week just to be safe.

Humphrey

I didn’t need to ask our three dogs if they were interested. As soon as I grabbed a leash, they all swarmed me like I was holding leftover steak. I used to be able to manage two at a time for a walk, but not anymore. Three guesses as to which one got to go first.

I’m not sure who is in worse shape – me or Humphrey. Before we embarked, I set my expectations low. If I could manage only a few blocks, then so be it.

As soon as we got out the door, the warm air and sun on my skin felt amazing. I wore a sweat jacket over a t-shirt but took it off after only a block or two. Before I knew it, Humphrey and I had made it to my stretch goal – the Garden of Reflection 9-11 Memorial. Approximately a 2-mile roundtrip walk from our house.

Humphrey

When we arrived back home, I was sweating and Humphrey didn’t stop panting for 30-minutes. Clearly, we need to do this more often.

They’re an increasingly rare event, but days like today when I’m both motivated and have energy are a blessing. Hopefully, tomorrow will be the same  and I can walk the other two pups!

My Valentine

Valentine card symbol – birds in love

Valentine’s Day is widely recognized as a day for celebrating romance, with people buying flowers, candy, jewelry and other gifts as a sign of love and devotion for their beloveds. While no one has pinpointed the exact origin of the holiday, its romantic association is apparently related to the time of year when birds choose their mates.

Regardless of its origin, Hallmark Cards began mass producing valentines in 1913 and February 14th hasn’t been quite the same since. But “Valentine” comes from the Latin word valentia, which means “strength” or “capacity,” and it’s those attributes that serve as the inspiration for this blog post.

It’s strange how certain moments can really stick in one’s mind. For me, one such memory is from the beginning of Deadpool, a 2016 American superhero film based on the Marvel Comics character of the same name. A comedy seemed appropriate, as I was undergoing initial cancer treatment at the time and needed a good laugh.

Watching the movie alone from the comfort of my home on cable television, there were many moments when I chuckled. However, one scene caught me off-guard. You see, after learning that he has advanced cancer, lead character Wade Wilson (Deadpool/Ryan Reynolds) breaks up with his fiancé Vanessa rather than subject her to life with a terminally ill man.

“Listen, we both know that cancer is a shit-show. Like a Yakov Smirnoff opening for the Spin Doctors at the Iowa State Fair shit-show. And under no circumstances will I take you to that show. I want you to remember me, not the ghost of Christmas me.”

“The worst part about cancer isn’t what it does to you… but what it does to the people you love.”

– Wade Wilson (Ryan Reynolds) in Deadpool

Sure, it was only a movie. But the dark cancer message “what it does to the people you love” haunted me for days. Would my wife and children actually be better off not being subjected to my forthcoming shit-show? It wasn’t just a Hollywood moment, but rather a genuine concern.

Studies have shown that wives who encountered the unexpected and uncontrollable situation of having a husband with diagnosed cancer experienced a multitude of coping difficulties. In addition, wives underwent psychological disorganization, disequilibrium, and emotional imbalance. Not surprisingly, they also reported that their children had coping difficulties. Partners of patients who are experiencing a recurrence of their illness or who are in the metastatic stage of the disease are more vulnerable to increased distress and problems of adjustment.

Yup, running away. Disappearing. Going off-the-grid so that no one could find me. Deteriorating, suffering, and ultimately dying alone. No record or witness for what I went through. Those who knew me would simply remember me for who I was, not what I had become – a terminally ill cancer patient. I foolishly gave it all serious consideration in the name of protecting my family. Acquiring superhero powers just didn’t seem as viable.

Fast-forward to today and clearly, I did the exact opposite of simply disappearing into obscurity. I started this blog, published my memoir, and became a vocal patient advocate. Through radio, television, and numerous articles and interviews, I helped increase awareness for the human papillomavirus (HPV), its link to cancer, and the importance of HPV vaccination. Knowing that I couldn’t shield my family from the shit-show, helping others avoid my plight seemed like the only logical alternative to extract some good from a bad situation.

I suspect many people on the outside will have strong opinions as to whether or not I made the right decision. Entering my third year of treatment, I can say that I’m still not completely sure. There is a long, long list of sights, sounds, and sadness during this period that I would gladly erase from my family’s memory. But there are also many good times that I truly treasure.

Fortunately, I had complete faith in my wife, Lorie. I knew her resolution, inner power and confidence, which I found attractive qualities from day one, would help get her through the shit-show. She possessed the requisite strength and capacity.

It has been anything but easy, yet I believe our relationship is even stronger now as a result of cancer. Or, perhaps Lorie is just experiencing the Florence Nightingale Effect, as she has become quite a skilled cancer caregiver.

As we approach Valentine’s Day (also her birthday!), a special “thank you” to Lorie for simultaneously juggling work, caregiving, housekeeping, raising our daughters, being a strong role model for them, managing our small petting zoo, and much, much more. Happy Birthday and Happy Valentine’s Day, Lorie! You didn’t deserve a front row seat at the shit-show and I’m very lucky to have you by my side.

Uneventful Streak Ends

It started with a runny nose and sneezing last weekend. Then came a cough and a mild fever that never went above 99.7 Fahrenheit – that is until the following Wednesday. A brief telephone discussion with the doctor on call late that evening confirmed that a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility was in order.

Following my latest round of chemotherapy, a fever of 100.4 Fahrenheit or higher is disconcerting. It could signal that I’m neutropenic – running dangerously low on a type of white blood cell (neutrophils) that serve as the body’s primary defense against acute bacterial and certain fungal infections. The chemotherapy I’ve been receiving can reduce the number of neutrophils circulating in the blood. Alternatively, a fever could be associated with the flu, which is particularly dangerous this season and breaking records.

Lorie and I started packing for an overnight stay at the MSKCC “bed and breakfast” as we like to call it. Before heading out, I hugged each of our dogs – just in case. Unfortunately, that simple action set into motion a rush of feelings and steady stream of tears down my cheeks. I was a total mess by the time Lorie backed the car out from the garage. Our daughters weren’t home at the time, which in retrospect was probably best.

At first, I failed to appreciate why Lorie attempted to set a new land speed record for shortest travel time between Bucks County, PA and New York City. Then, I remembered how I narrowly missed having a tachycardia event (abnormally fast heart rate) on the New Jersey Turnpike during our last trip to MSKCC’s urgent care facility in August 2017 when I ended up in the ICU.

Upon arrival at urgent care just before midnight, a series of tests were ordered – blood work, urine, chest x-ray, and nasal swab to test for influenza. The blood work came back first and my absolute neutrophil count (ANC) was 800 cells per microliter of blood. With an ANC below 1,000 cells per microliter of blood, the risk of infection increases. Combined with my fever, the medical team informed me that I was going to be admitted to the hospital and given a broad spectrum, intravenous antibiotic Zosyn® (piperacillin and tazobactam).

One by one, the other test results came back normal – that is until the nasal swab revealed I was positive for Influenza B. Influenza A and B are the two main types that routinely spread in humans and cause seasonal flu epidemics. Fortunately, I had received a flu shot this season, as this can help reduce the severity of the virus.

Alas, being hospitalized ended the longest “uneventful” streak of my cancer experience. But for six glorious months, living with cancer was relatively dull and boring. And it was wonderful.

With the source of my fever identified as the flu, I was prescribed Tamiflu® (oseltamivir phosphate) and the general plan was to release me from the hospital as soon as my ANC returned to 1,000 or higher. My prior chemotherapy was given on January 30th, so its adverse effect on my blood counts should be diminishing. Patients often have their lowest number (called a nadir) and highest risk of infection around 7 to 10 days after the start of chemotherapy.

However, my next ANC count was 400. When ANC falls below 500 cells per microliter (severe neutropenia), the risk of infection increases significantly. Accordingly, my stay at the bed and breakfast was extended.

Michael and Lorie Becker at MSKCC

By Friday, my ANC rebounded slightly to 700. Heading in the right direction, but still below the 1,000-level needed for my release home. I felt much better than when I was admitted, which was frustrating. In fact, the fever went away as did a runny nose, sneezing, and coughing.

A repeat blood test was scheduled for very early Saturday morning, with the expectation that my ANC would finally rise above 1,000 and we’d be sent home. Or so I hoped. But the test results showed a slight decrease from the prior day to 600.

I was then given a shot of Neupogen® (filgrastim), which works like a natural protein in your body to promote the growth of new white blood cells. Interestingly, Neupogen was among the very first biotechnology products that I learned about during my introduction to the sector in the late 1990s. It was approved by the Food and Drug Administration (FDA) back in 1991.

My blood counts will continue to be monitored until the ANC improves, but sometimes it can take 24-hours to see the effect of Neupogen. And so, we wait.

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.