Up to Eleven

Late last month, I experienced severe pain in my left hip/buttock that warranted a trip to the urgent care facility at Memorial Sloan-Kettering Cancer Center (MSKCC). With random movement, a sharp, electric-like pain radiated down my left leg. It was like nothing I’ve experienced before. Lying down on my right side made the pain better, but sitting or climbing stairs was unbearable.

During my stay at urgent care, an x-ray of my pelvis showed no evidence of fracture. There was also no indication that cancer had spread to that area, which was naturally my initial concern.

While waiting to see the doctor, I was given a non-steroidal anti-inflammatory drug (NSAID) called ketorolac via intravenous infusion to help address the pain. It worked so well that I was later released. The pain was attributed to an inflammatory condition, possibly bursitis according to the discharge papers.

Since the cancer wasn’t responsible for my pain, I was instructed to follow up with a local orthopedist for further evaluation and treatment. In the meantime, I found it unusual that oral NSAIDs and even narcotics like oxycodone failed to address my growing pain.

An x-ray of my spine was taken by the orthopedist, which also came back normal. I was prescribed physical therapy for 4-6 weeks and a steroid regimen to help address inflammation that was possibly putting pressure on my sciatic nerve. I required a walking cane, as it felt like my left leg was going to collapse every time I experienced a bolt of pain.

Completing the steroid regimen and two weeks of physical therapy, I was feeling only marginally better. During a follow-up appointment with my orthopedist, I received a steroid injection directly into the left sacroiliac (SI) joint region. I was told pain relief could take a few days, for which I anxiously awaited.

At this point, I was due for a periodic CT scan of my chest, abdomen, and pelvis at MSKCC. It would reveal how cancer responded to the recent stereotactic body radiation therapy (SBRT) directed to three areas—a lesion in each lung and also my spleen. It was hoped that the SBRT would decrease the size of targeted tumors in the lungs enough to alleviate a nagging cough that I developed.

Given the unique pain I was experiencing, thoughts of cancer progression still swirled in my mind. Bone is the third most common site for the spread of cancer, with half or more of patients diagnosed with cancer experiencing bone pain.

Coincidentally, I became quite familiar with pain arising from metastatic bone disease (MBD) during my tenure as CEO of Cytogen Corporation. The company had developed and commercialized Quadramet®—an injectable radiopharmaceutical used to treat bone pain associated with cancer.

Pain from MBD results from bone destruction and fragility. A pain scale measures a persons pain intensity based on self-report, with pain levels between 0 (pain-free) and 10 (pain that makes you pass out). Since late August, my daily pain went from a low of 5 at rest up to 11 with movement (“Up to eleven” coined in the 1984 movie This Is Spinal Tap).

Since I was scheduled to travel to MSKCC for the CT scan, I asked my treatment team if an MRI of my spine made sense to plan for that same day. I couldn’t help but think the severe pain was caused by cancer progression to bone. They agreed, and both imaging procedures were scheduled for September 19, 2018.

Meanwhile, after completing oral steroids, two weeks of physical therapy, a steroid injection, and walking with a cane, my resting pain level slightly improved. Regretfully, I second-guessed my request for an MRI of my spine due to the modest pain improvement and canceled that appointment after consulting with my treatment team.

The day of the CT scan, my pain was back to full force. I knew that I couldn’t hold still long enough to complete the CT scan. It took 10 mg of oxycodone to sedate me and alleviate my pain just enough to get through the 10-minute procedure.

Yesterday, Lorie and I reviewed the CT scan results with my oncologist at MSKCC, Dr. David Pfister, and Nicole Leonhart, ANP, RN. My cough disappeared, so I was very confident that the inferior left hilar node decreased in size following SBRT. The radiology report confirmed that it declined from 1.3 cm x 1.3 cm on the prior scan to 0.6 cm x 0.6 cm.

Unfortunately, that was the only good news contained in the CT scan results. While the tumor on my spleen also received radiation, it nearly doubled in size from 4.0 cm x 2.7 cm to 7.4 cm x 5.1 cm. Could this be inflammation following the radiation treatment, or did it genuinely represent tumor growth? No one could be sure based merely on imaging.

Figure 1. Vertebral body

Our hearts sunk as the discussion turned to the suspicious new lesions found on my spine. Specifically, the L5 and T7 vertebral bodies—spool-shaped structures that constitute the weight-bearing portion of a vertebra (see Figure 1). Most spine tumors are metastatic, representing the spreading of cancer from a different part of the body. Unfortunately, metastatic or primary tumors, trauma, and infection are prominent pathologies of L5.

Figure 2: MRI images showing the location of cancer spread to the spine (dark areas near arrows). Click to enlarge.

Correlation of the findings using an MRI was needed. Immediately, I regretted second-guessing my decision to get an MRI done while in town for the CT scan last week. Amazingly, I was able to get an MRI done the same day of my appointment at MSKCC. The results confirmed that cancer had now spread to my T7, L5, T5, and S2 vertebral bodies (see Figure 2).

When cancer spreads to the spine, it can replace your bones or compress your nerves, resulting in compression fractures, pain, and reduced blood supply to the spinal cord. Fortunately, cancer has not yet contacted my spinal cord. Otherwise, I would likely have been admitted for emergency spinal surgery. Spinal cord compression needs to be treated right away to try to prevent permanent damage to the spinal cord.

The good news, if there is any, is that radiation therapy provides excellent relief for painful bone metastases and retreatment is safe and effective. Within a week or so, I will undergo both mapping and radiation treatment for the painful spine metastases. In the majority of patients, radiation therapy can provide substantial pain relief.

Figure 3: Michael Becker’s disease and treatment milestones. Click image to enlarge.

After finishing my third cancer treatment in March 2018 (nine months of combination chemotherapy—carboplatin and paclitaxel), I decided to take my first treatment break after being diagnosed (see Figure 3). As I had hoped, the past six months were precisely what I needed and left me feeling refreshed and reenergized.

Assuming my bone pain is addressed, I’m faced with the option of pursuing novel therapies or merely continuing my treatment hiatus. For example, I have not yet been exposed to cetuximab, a biologic agent that blocks the epidermal growth factor receptor (EGFR) and is FDA approved for the treatment of metastatic colorectal cancer, metastatic non-small cell lung cancer, and head and neck cancer. Alone or in combination with an investigational agent, cetuximab could be a viable treatment option that doesn’t negatively impact my quality of life in the same manner as chemotherapy.

As soon as I get past the bone pain issue, I plan on meeting with Dr. Pfister to continue hearing his thoughts on potential next steps that could achieve my goal of maintaining a decent quality of life while still pursuing active treatment. To be continued…

The Art of Dying

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.

Life’s a Beach

Last summer I was in terrible shape. I had not one, but two chest tubes to drain fluid from my left lung. My disease was progressing with each CT scan. I was contending with a newly discovered blood clot and bleeding issues from the corresponding medication. Also, a rapid heart rate required a brief stay in the ICU. The prognosis at that time was grim. In fact, if someone told me at the time that I’d still be here this summer—I wouldn’t have believed them.

However, after starting combination chemotherapy, my cancer regressed (still present, but smaller). Both chest tubes were eventually removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. An inferior vena cava (IVC) filter, a medical device, was implanted into my inferior vena cava to catch blood clots and stop them from moving up to the heart and lungs.

After finishing my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), I decided to take a treatment break in March 2018 at the suggestion of my oncologist. With each passing day, my energy and appetite have improved. Today, I almost look and feel “normal” for the first time since beginning treatment back in early 2016.

But this coming week marks my periodic CT scan to see how my disease has behaved (or not) without any treatment during the past few months. Understandably stressful and causing me great anxiety (scanxiety), I’ve had four migraines in a little over one week. Uncharacteristic enough in frequency to warrant a trip to the emergency room, but an MRI of my head showed everything was fine. Or, “f.i.n.e.” as far as my brain goes! (A reference to rock band Aerosmith’s acronym “Fucked Up, Insecure, Neurotic, and Emotional”)

For me, distractions are key during periods of scanxiety. So, my youngest daughter, Megan, and I spent the day at the shore (Ocean Grove Beach, NJ) on Friday. We’re the only two members of our immediate (and very pale) family who truly enjoy going to the beach. It was my first trip there since before being diagnosed in 2015!

However, more fun than the sun, sand, and sea were the impromptu singing sessions in the car ride there and back. Since they were young, I’ve exposed both our daughters to a wide variety of music. I’m proud they still know the words and can sing along to diverse artists such as Johnny Cash, The Beatles, Guns N’ Roses, Van Halen, and many others. I cannot carry a tune in a bucket, but Meg has a decent singing voice.

The perfect ending to the day, I barbequed burgers for Lorie and me after arriving home late that afternoon. School is still in session, so she had worked a full day. It was quite a feast – fresh sweet corn, baked beans, and chips. Preparing a meal for her was nice for a change.

I’ve lost count of the fantastic times that I’ve experienced during my recent treatment break. But yesterday was one that will stand out for quite some time. It was a darn good day!

After this week’s CT scan and subsequent radiology report, I’ll post another blog update. So, stay tuned.

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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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.

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.

First Chemo of 2018

Early this morning, my youngest daughter Megan and I arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) to start round number seven of my current chemotherapy regimen (a combination of carboplatin and paclitaxel). What a fun way to welcome 2018!

Each treatment appointment is preceded by a blood test to look at the levels of various components (red blood cells, white blood cells, platelets, electrolytes, etc.). Not surprisingly, all of my counts were good enough to warrant treatment today as planned after a two-week break at the end of December 2017.

Michael and daughter Megan Becker in the chemo suite at MSKCC

Knowing today might be a bit crazy, I had scheduled an early morning appointment to try and get ahead of any delays. We arrived a few minutes before my 7:45 am ET blood test and ended up catching the 12:20 pm ET train from New York to return home. Everything went fine with treatment, although I don’t usually start feeling the side effects for a few days.

I met with my oncologist Dr. Pfister during today’s appointment. He discussed doing my next CT scan around the end of January 2018, which would be after the current chemo treatment cycle is finished. Depending on those results, he discussed maintenance treatment with just one of the two chemotherapies if the scan looks good. Otherwise, he might recommend switching to cetuximab (Erbitux©) if the chemo isn’t continuing to work. Either way, it looks like I’ll be coming to another critical treatment decision point early in 2018.

The best news of the week was being able to spend New Year’s Eve celebrating with my wife, Lorie. Actually, “celebrating” might be a strong word–unless you expand the definition to include sitting on the couch watching Dick Clark’s New Year’s Rockin’ Eve with Ryan Seacrest and going to bed before midnight. But, we were together for yet another milestone. One that, frankly, I was quite surprised to see.

To my family, friends, colleagues, researchers, health care providers, members of the media and anyone reading this blog post–thank you for your interest in my cancer patient journey. I wouldn’t be here today without such a robust support network. Best wishes for good health, plenty of happiness, and much prosperity in 2018 and beyond to all of you!

 

Good Luck Charm?

It was July 18, 2017 when I started my third line of treatment (carboplatin/paclitaxel) for Stage IV squamous cell carcinoma of the head and neck. Things weren’t exactly going great at the time and I remember thinking that I wouldn’t make it until my 49th birthday in November.

For example, I had two chest tubes to manage a pleural effusion (buildup of fluid in the pleural lining of the lung). My tumors were slowly growing with each CT scan. Additionally, I had an IVC filter put in to manage clots since blood thinners had caused bleeding issues. I was a mess and in-and-out of the hospital constantly.

Earlier today, however, I received my third consecutive CT scan report since starting chemo again that showed further decreases in my lung, spleen, and pleural metastases (where the cancer had spread). It looks as though the cancer continues to respond to the treatment, which is great news.

It just goes to show the perils of trying to answer the question every cancer patient wants to know: How much more time do I have left? It doesn’t stop us from asking physicians, but as a dear friend consistently points out to me – you just have to live in the moment and enjoy every day. Much easier said than done, but sage advice nonetheless.

Our pup Humphrey

I can’t help but wonder if our 8-month old golden retriever puppy, Humphrey, is perhaps some kind of good luck charm? We got him about a month before I started treatment and things have been going relatively well since then. Not that we need another reason to love him! He’s such a clown, always making us laugh and smile. We love all of our other pets too, but there’s just something about Humphrey that makes him special. At the very least, he’s a great therapy dog for me.

In any event, today is a very good day. It will be nice to bask in the warmth of some good news as the colder weather of the season approaches.

Two Years Gone

You’ll know from the opening pages of my memoir A Walk with Purpose that it was the day before Thanksgiving in 2015 when I first discovered a large lump on the right side of my neck. The discovery catapulted me on a journey that I never could have imagined, full of twists and turns and changing the very fiber of my being—physically, emotionally and spiritually.

A lot has changed in the past two years—some good, some bad, some perhaps downright ugly. But Thanksgiving has always been one of my favorite holidays—a time of reflection and giving thanks for the goodness of the season past instead of complaining about what we don’t have.

Throughout the process of writing my memoir, I was constantly amazed to see how all the gifts and experiences of this world came together like tiny puzzle pieces to reveal the bigger purpose of my life. In particular, how an unlikely career path to the biotechnology industry would help forge key relationships, open new doors, and help me navigate a cancer diagnosis and treatment through the knowledge gained over decades of service and leadership. Most importantly, how I could use all of the aforementioned to help others facing head and neck cancer caused by the human papillomavirus (HPV).

In some ways, my revelation was reminiscent of the first time I saw the movie Signs written and directed by M. Night Shyamalan. In the movie, a father and former priest lives with his asthmatic son, his daughter who constantly leaves glasses of water sitting out around the house, and his younger brother, a failed minor league baseball player, on an isolated farm in Bucks County, Pennsylvania (coincidentally where we have lived for more than 15-years…). The father lost his faith and gave up his priesthood after his wife died in a local traffic accident. Towards the end of the movie, a crucial scene reveals the unlikely connection between asthma, glasses of water, and the mother’s final words to her husband instructing his brother to “swing away.” At the end of the movie, the father is shown returning to his priestly duties, apparently having regained his faith.

During 2017, I was fortunate to write and publish (then rewrite and republish…) my memoir. Since my diagnosis, I’ve also published a total of 70 posts (gulp!) on my patient blog. Supporting these efforts, I’ve worked with a publicist and conducted numerous interviews and penned guest editorials for various media outlets. All of these actions designed to: 1) help increase awareness of HPV and its link to six cancers in men and women; 2) underscore the need for additional prevention efforts for HPV-associated cancers, including efforts to increase vaccination coverage; 3) correct the misperception that HPV is mainly a disease affecting women; and, 4) highlight how HPV can be spread in the fluids of the mucosal membranes, which line the mouth, throat and genital tracts. Looking back at my efforts, I hope you’ll agree it has been a productive year.

I’m currently going through my third treatment regimen (chemotherapy) with the simple hope of buying more time. My body is weary from repeated assault with toxic chemicals aimed to keep the cancer at bay—hoping to see the day when a better treatment option becomes available. Fortunately, my current quality of life allows me to continue my walk with purpose. In fact, today I am doing a couple of media interviews and meeting with a head and neck cancer patient support group in Princeton, New Jersey.

My next CT scan has been scheduled for the last week of November. The results of which will inform whether or not my cancer continues to shrink, stays stable, or is progressing. Regardless of the outcome, I strive to simply live in the moment and take advantage of the Thanksgiving period to consider how we can spread more happiness around, to look back at all the great memories and good people who came into our lives.

May the good things of life be yours in abundance not only during November but throughout the coming year. Thank you to everyone with an interest in my story for your continued support and for keeping in touch!

Book Re-Released

When I first started seriously writing my memoir in January 2017, I was in a bit of rush to get it completed. At the time, my disease outlook was less than favorable and I didn’t know how much time I would have to write. Somehow, I was able to complete and publish “A Walk with Purpose: Memoir of a Bioentrepreneur” before the end of April that same year.

Since then, my cancer has responded well to the current chemotherapy regimen. Six-months after publishing my book things are still stable — although I’m living from CT scan to CT scan.

After stepping away from my book for a while, I recently took the time to reread it with a fresh set of eyes. Besides, a lot has transpired over the last six-months. With the benefit of more time, I sought to revise some sections and remove others. I also updated the ending of the story to reflect my current prognosis.

If you have purchased an eBook version of the novel in the past, the new version is now available via Amazon at no cost. Simply update the content on your “Manage Your Content and Devices” page (www.amazon.com/gp/digital/fiona/manage).

Customers who download eBooks through Kindle Unlimited will receive the updated content as long as they haven’t returned the Kindle Unlimited borrow before the content update is initiated.

At this time, customers who download eBooks through Kindle Owners’ Lending Library don’t receive updated content.

Going forward, anyone who purchases either the paperback or eBook version will receive only the new, updated copy. To verify whether or not you are viewing the new/updated version, look for the text ***Second Edition*** on the copyright page.

While it’s not a complete rewrite, there are substantial updates throughout for those considering whether or not to reread the book.

Good News and TGIF

Earlier this week, I had my periodic CT scan to determine whether or not the chemotherapy I’ve been receiving is continuing to work. I just received word from MSKCC moments ago that indeed many of the tumors continued to shrink compared to my last imaging procedure in August (which showed a decrease in tumor size almost across the board). Importantly, there weren’t any new lung metastasis.

Raspberry flavored, oral contrast agent to drink before CT scan

Clearly, this is very good news. In a perfect world, one would like to see all the tumors completely disappear. That would be highly unusual, so I will gladly accept serial decreases in the tumors from period-to-period.

This coming Tuesday, I should receive my chemotherapy doublet (provided that my blood counts are sufficient).

That’s all for now…short and sweet…as I am going to hug my family and enjoy the weekend.

Day Number Four in the Hospital

Life has been hectic since this past Sunday when Lorie and I drove to New York City for another visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility. Drainage from my chest tube once again changed from amber fluid to the color of a fine Cabernet wine, which signaled that bleeding resumed. More alarming was the accompanying shortness of breath and increased coughing. I was out of breath even from walking a short distance to go to the bathroom.

We arrived at MSKCC around 10am and, following a brief review of recent events, had a chest x-ray taken to get a quick read on the situation. The resulting images showed a complete “white-out” in the left lung, which indicated that fluid had essentially filled the entire space. Normally, the lungs look transparent or black on an x-ray due to air in the lungs.

The fact that I had only one viable lung explained the shortness of breath and coughing. What the x-ray couldn’t reveal was the composition of the fluid (serous fluid, blood, tumor) or its source. For more information, a CT scan was required and scheduled. Unfortunately, weekends at any hospital can be hectic and my CT scan didn’t take place until close to midnight and I was admitted.

Monday morning, we had the pleasure of meeting again with surgeon Dr. Bernard Park, deputy chief of clinical affairs, thoracic service at MSKCC. In December 2016, Dr. Park had successfully performed a bronchoscopy procedure to biopsy a suspicious lymph node near my airway. We knew that we were in good hands.

Dr. Park explained the situation and the requisite next-steps were abundantly clear. For whatever reason, the Aspira Pleural Drainage Catheter in my left lung wasn’t fully draining the fluid – especially towards the top section of my lung. That fluid needed to be drained in order to alleviate shortness of breath and coughing. How to best accomplish this was a source of significant discussion.

One short-term solution was to temporarily insert a plastic tube straight through the front of my chest into the top section of the lung to manually extract the fluid. This would require a brief stay in the hospital while the tube was present and it would be removed prior to going home. A longer-term solution was to place a second PleurX catheter that could be accessed whenever needed at home to extract fluid from the top section of the lung.

In either case, a potential pitfall was that the fluid in the upper section of the lung may actually be fibrotic scar tissue (called loculation) or tumor, preventing effective drainage. Dr. George Getrajdman, an interventional radiologist at MSKCC, proposed a step-wise procedure. First, he would try to extract the fluid near the top of the left lung using a syringe to see “if” anything could be extracted. If so, he could confidently proceed with placement of a second catheter (Option A) or the fluid could simply be drained with the syringe to see if that provided symptomatic relief before proceeding with more permanent catheter placement (Option B). Placing a temporary plastic tube was also a consideration (Option C), with the downside being that fluid accumulates again in the future – requiring another procedure. If no fluid could be extracted with a syringe, then the space was being occupied by something more solid (fibrotic scar tissue and/or tumor mass) and a catheter would be pointless. Ultimately, I decided to proceed with Option A.

Requiring more urgent resolution, however, was the recently discovered blood clot in my iliac vein near the pelvis and its potential to detach and cause a pulmonary embolism (PE) – a condition in which one or more arteries in the lungs become blocked by a blood clot, which could stop blood flow to the lung. With essentially only one lung functioning, a PE in my remaining viable lung would likely be fatal. Hence the sense of urgency.

Due to the recurrence of blood in the drainage from my original chest tube, we reached the point where taking anticoagulant medication (Lovenox®/ enoxaparin sodium) to treat and prevent deep vein thrombosis (DVT) was no longer viable and was discontinued. The only alternative was placement of an inferior vena cava (IVC) filter device designed to trap/prevent my blot clot from traveling from the largest vein in the body, the inferior vena cava, to the lungs or heart.

To insert an IVC filter, I was given medication to help relax and a local anesthetic to numb the area of insertion. Implanting the IVC filter was Dr. Getrajdman, who inserted a catheter through a small incision in my neck. Using X-rays images to guide the procedure, he advanced the IVC filter through the catheter and into the inferior vena cava. Once the IVC filter was in place, he removed the catheter and put a small bandage on the insertion site.

X-ray image following drainage of 1.5 liters of fluid from left lung showing air returning to the top portion (red circle).

Fortunately, Dr. Getrajdman was also able to deal with the left lung issue during the same procedure. Approximately 1.5 liters of fluid were successfully acquired from the top portion of the lung, so he proceeded with placement of a second catheter as planned/hoped. Both procedures took about 1.5 hours in total to complete. Afterwards, an x-ray confirmed that the top portion of the lung was free of fluid as shown in the accompanying image.

My breathing improved immediately following the procedure and I felt fine with all of the pain medication. However, waking up the next day (Tuesday) I felt like I’d been hit by a truck. There was a fair amount of pain at both the incision on my neck from the IVC filter insertion and the newly placed catheter site. As the day progressed, the pain diminished and I started feeling much better.

By late afternoon, tissue plasminogen activator (TPA) was injected through my original Aspira chest tube to help clear the line by breaking down blood clots. Afterwards, we were trained on using the “new” PleurX catheter and then proceeded with draining fluid from both the top and bottom catheters. The top PleurX catheter rapidly drained 500cc of fluid, which looked far less bloody than what had previously been extracted from the bottom. We were only able to drain 200cc of fluid from the bottom Aspira catheter, which was still bloody and thicker. It’s speculated that the fluid from the bottom was left over from before and there was no active bleeding, which will be confirmed by monitoring hemoglobin levels.

With the IVC filter in place and the ability to drain both top/bottom fluid from my left lung, I was able to proceed with my second dose of chemotherapy while in the hospital. This consisted solely of paclitaxel and then next week should be my initial loading dose with cetuximab.

We’re planning to try draining both chest tube sites today (Wednesday) and looking for further improvement in subsequent chest x-rays. Assuming all goes well, I should be released from the hospital but need to stay in NYC overnight and see my oncologist tomorrow. I’m feeling much better now, but the coming days should be when the effects of my first week of chemotherapy (paclitaxel/carboplatin) start materializing. In any event, I’ll be happy to get home hopefully tomorrow and see how big our new puppy Humphrey has grown in the short time we’ve been away.

It Could Always Be Worse

After a full day of activities yesterday, Lorie and I decided to grab an early dinner in Bethesda, MD at a restaurant recommended to us. We really haven’t explored much of the local establishments, so it was nice to venture out and try something new.

We sat down and I immediately focused on the cheese appetizer selection and ordered three different types. Half way through the appetizer, however, my cell phone rang. It was Dr. Strauss from the NIH.

I could tell from the initial line of questioning (are you still at NIH, where are you now, are you alone, etc.) that bad news would shortly follow. Sure enough, yesterday’s CT scan revealed a deep vein thrombosis (DVT) on the left side of my pelvis and Dr. Strauss requested that we promptly return to NIH to start treatment with Lovenox (enoxaparin). With that, we paid our restaurant bill and left our dinners behind to take an Uber back to NIH.

VIDEO CAPTION: 3D CT image from NIH showing tumor locations highlighted in green. The largest mass (lower right) is from my spleen.

Both Dr. Gulley and Dr. Strauss met us back at NIH in the day hospital and we went to an empty treatment room to talk in private. Unfortunately, the blood clot was merely a sideshow for the bigger news, which was that several tumors increased in size from the prior scan taken 6-weeks ago. For the first time, my outlook was black & white: the cancer was winning the tug-of-war with my body’s immune system. Receiving further treatment with the experimental agent M7824 would be hard to justify and more aggressive treatment, such as chemotherapy, appeared to be the favored next step.

After a brief tutorial on self-injecting Lovenox twice daily, we returned to the hotel and planned on meeting early the next morning to review the CT scans and have further discussion. The mood was somber and neither one of us slept very well.

Michael and Lorie Becker reviewing CT images with Drs. James Gulley and Les Folio of NIH. Photo credit: Daniel Sone of NCI

The NIH is only one of two places to have advanced imaging technology that was truly fascinating and dramatically improves the ability to visualize and follow specific tumors over time. Personally, I was amazed by the progress radiology has made since I last reviewed such images. We were engrossed in discussion about the various images displayed on the three monitor screens when Lorie’s phone rang. It was our oldest daughter Rosie.

The first few calls were easy to dismiss since we were in an important meeting, but then came a text – “emergency.” Driving home from class, Rosie apparently veered into the lane of oncoming traffic and hit another car going 30-40 MPH. All of the airbags deployed and the car is totaled. She was taken to the local hospital for x-rays, but nothing was broken and she was released. We understand the driver of the other car is okay as well.

Immediately, my mind wandered from my own mortality being visualized on the computer screens to how Rosie’s accident could have been far, far worse – perhaps even fatal. I’m not sure exactly how I would have reacted to that news on top of my disease update, but I do know it would pale by comparison to my own situation.

On more than one occasion, Lorie and I have uttered the words “it could always be worse.” Lately, it has been harder and harder to make that statement. However, with Rosie largely unharmed in what could have been disastrous, today definitely could have been worse.

I will blog more about my condition and treatment options in future posts after digesting all of the information from the past 48-hours. In the meantime, with no infusion of M7824 today, we are on the train home to be with Rosie.

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Collecting More Information

Following Tuesday’s news that several of the tumors in my lungs actually increased in size and a new spot appeared on my spleen, Lorie and I headed back to the NIH on Thursday for more tests to help better guide subsequent treatment decisions.

The first test was a CT image of my brain taken Thursday mid-afternoon, which would be used to rule out the spread of cancer to that particular organ. Patients with brain metastases are often excluded from clinical trials due to historically dismal survival and concerns about blood brain barrier drug penetration. Fortunately, we learned the next morning that this test came back negative for cancer progression to the brain.

The second test on Friday was an image-guided biopsy of a single lung nodule to help guide between cancer progression and inflammation as the reason for the increase in size seen on the recent CT scan on the lungs. In my case, a core needle biopsy was performed, which is less invasive than surgical biopsy and doesn’t require general anesthesia.

Early Friday morning, Dr. Elliot Levy, an interventional radiologists at NIH trained in radiology and minimally invasive procedures, met with us first to discuss the procedure. He pulled up a cross sectional image of my lungs, which showed several of the suspicious nodules.

CT scan of my lungs, showing target nodule for biopsy with two lines representing potential needle angles for biopsy. Other nodules within the lungs circled in red, which could be more dangerous to biopsy.

One in particular was located in the pleural cavity – normally a thin membrane that lines the surface of the lungs and the inside of the chest wall outside the lungs. In the bottom of my left lung, however, fluid built up in the pleural cavity where one of the nodules was located. Dr. Levy explained to us how this nodule could be biopsied without puncturing the lung lobe, which can result in a longer hospital stay.

Sometimes, a collapsed lung (pneumothorax) occurs after a lung biopsy.  As a precaution, a chest x-ray is taken after the procedure to check for this before sending the patient home.

After meeting with Dr. Levy, I was escorted back to the biopsy procedure room and placed on my right side on a table. I was consciously sedated, produced by the administration of two medications: a single dose of fentanyl given intravenously that can produce good analgesia for 20-45 minutes, and midazolam, which has a fast-acting, short-lived sedative effect when given intravenously, achieving sedation within one to five minutes and peaking within 30 minutes. The combination produces an altered level of consciousness that still allows a patient to respond to physical stimulation and verbal commands, and to maintain an unassisted airway. Midazolam is a primary choice for conscious sedation because it causes patients to have no recollection of the medical procedure.

Dr. Levy worked out of sight behind me to perform the biopsy, as he went through my back side. I was fairly nervous going into the procedure, but everything went extremely well with absolutely no pain or unexpected events due to the sedation.

After recovery, a subsequent chest x-ray confirmed that the lungs were indeed fine after the biopsy and we left NIH shortly thereafter to head back home to Pennsylvania.

Thumbs up; recovering after biopsy procedure at NIH

The preliminary results from the biopsy should be available early this week. If the biopsy shows ample evidence of immune stimulation, an argument could be made to stay on the current drug and that the “pseudoprogression,” or the initial radiologic appearance of an increase in tumor burden, might actually be inflammation and followed by tumor regression. A remote possibility in my type of cancer, but worth confirming.

Should the biopsy results instead demonstrate increased tumor burden, then we could consider switching to another investigational agent or even chemotherapy to shrink the tumors before proceeding again with one of the immunotherapy clinical trials.

Lorie and Michael Becker in front of cherry blossoms

Determined to stay positive, Lorie and I took advantage of the warm spring day on Thursday to stop outside NIH and snap a picture in front of some cherry blossoms. Unfortunately, snow and cold returned on Friday for the commute home.

We’ll know more this week, so stay tuned…

Not as We Had Hoped

The results of today’s CT imaging procedure were not as we had hoped. Ideally, the dozen or so tumors in my lungs would have shown signs of shrinkage – indicating that the investigational drug was having a positive effect on the cancer. Instead, several of the tumors actually increased in size and a new spot even appeared in my spleen.

One of the hallmarks of immunotherapy, such as the checkpoint inhibitors, is the potential for a “delayed” response, which is not routinely seen with chemotherapy or other cytotoxic agents. Another biologic phenomenon unique to immunotherapy is “pseudoprogression,” or the initial radiologic appearance of an increase in tumor burden subsequently followed by tumor regression¹.

The CT imaging study cannot distinguish between cancer progression or inflammation as the reason for the increase in tumor size, so there is a chance that it’s due to inflammation and subsequent imaging tests in a month could demonstrate a reversal. However, it is also possible that the cancer isn’t responding to the investigational treatment.

To get more details, I’m undergoing a biopsy this Friday so that one of the lung tumors can be sampled. The preliminary information from that biopsy, which should be available next week, will help guide between cancer progression and inflammation. Decisions regarding how to proceed will depend on that outcome.

Needless to say, everyone’s hope was to have seen some sign of cancer regression on today’s CT scan and many teardrops were shed. The chances for a favorable outcome have diminished and must be acknowledged, but for now I’m persevering and will evaluate next steps following the biopsy results.

Sincere thanks to everyone who has offered their positive thoughts, prayers, and support. It is difficult to respond to each and every communication, but please know that I read “everything” and your time and effort is greatly appreciated. Special thanks to everyone at NIH for being so wonderful — even when faced with delivering bad news.

Now, more than ever, please keep all those positive vibes coming my way.

References:
¹ Amidst the excitement: A cautionary tale of immunotherapy, pseudoprogression and head and neck squamous cell carcinoma. Baxi SS, Dunn LA, Burtness BA.
Oral Oncol. 2016 Nov;62:147-148. doi: 10.1016/j.oraloncology.2016.10.007. Epub 2016 Oct 21.

Review CT results with ENT

IMG_6876At the physician’s office, the CD took a while to load on his laptop.  I suggested that while we were waiting for the images to load, perhaps we could discuss the accompanying radiology report.  I knew that the radiologist would provide a written assessment of his/her findings, so I wanted to get straight to the results.  My physician, however, excused himself for a bit since the CD was taking a while to load and to me, this was another red flag of bad news to come.  When he returned a short while later, the discussion centered around the enlarged lymph node and the fact that it “may” show evidence of necrosis at the center. I was more certain than ever that I had cancer and based on everything I read it was likely squamous cell carcinoma.  The real question was where the cancer originated – my lungs? The next step was to biopsy the enlarged lymph node to obtain more information through a procedure known as fine needle aspiration.

The physician injected novocaine directly into the enlarged mass prior to inserting a needle twice to extract fluid from the area.  He remarked that not a lot of fluid was easily obtained, which helped rule out to some extent the possibility of a cyst.  Once again, all arrows pointed to cancer.  The novocaine injection was the most painful aspect of the procedure, with the minor exception of some discomfort towards the end of the second needle stick.  The physician laid out a series of glass slides on the counter an applied the contents from the syringe onto them all.  That was it; now to wait for the pathology report.  Much to my chagrin, the doctor indicated that it could be up to a week to receive the report.  More waiting!  I wasn’t sleeping at night, so I was prescribed Ativan (lorazepam) to take before bed.

CT Scan

PET/CT scanI’m not usually claustrophobic, but even the open nature of the CT scan made me a bit uneasy.  The CT involved iodinated contrast, which is a form of intravenous radiocontrast (radiographic dye) containing iodine to enhance the visibility of vascular structures and organs during radiographic procedures.

Immediately following my CT scan, I received a CD with the results.  In view of my background with radiopharmaceutical companies – I loaded the CD in my computer to try and peak at the results.  Unfortunately, the CD was only for Windows computers and I only had access to a Mac. Nonetheless, I had a general idea of what wouldn’t be a good sign – such as a dark center in the enlarged lymph node, which could indicate necrosis.