An MRI of my spine was taken earlier this week. This was scheduled to gain more insight into the “triangle of pain” that has been causing me severe discomfort for weeks. Compared with prior imaging studies from September/October 2018, the latest MRI showed additional metastases (the spread of cancer) along with both increased and new bone lesions, including a left rib lesion and bilateral iliac bone lesions. Disappointing, but not overly surprising in view of the fact that it has been over four months between spine scans.
Of particular note, there is a new T8 left paravertebral lesion. This could be causing referred pain in my left lower rib area as well as the changes in skin sensation (numbness, pain, etc.). Similar to how the hip/buttock pain I’m experiencing is referred from cancer invasion of the L5 vertebrae and resulting moderate fracture.
Next week, we will meet with a physician at the Spine Clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to review the MRI scans and pain management options. They are apparently not in any rush to do surgery but want to evaluate my symptoms directly.
With regard to treatment, I’m continuing on the paclitaxel (Taxol®) schedule of three weeks on, one week off. I’m looking forward to next week, which is my “off” week. I still need to commute to NYC for the neurologist appointment, but at least no chemo.
Of course, the highlight of this week was celebrating Lorie’s birthday and Valentine’s Day as a family. Lately, it has been increasingly difficult finding reasons to smile—but as you can see in the photo below, everyone was grinning that day while celebrating a very special woman.
No one has mastered the art of happiness quite like Humphrey, our Golden Retriever. If only we could bottle his positive energy and the laughter he brings our family. You can see him being a goof after a bath and grooming session in the video clip below.
In the weeks and months following my initial cancer diagnosis in December 2015, the disease status occupied my every thought. Did the initial chemoradiation treatment work? Or had cancer already spread below my collar bone, which would change my prognosis from curative to palliative? If so, where did it spread and how fast was it growing? It was all I could think about (rightfully so, as it turned out).
Lately, however, my focus has shifted to managing various debilitating side effects of cancer and its treatment. It started with hip/buttock/leg pain that ultimately was diagnosed as originating from cancer progression to my spine. That pain was primarily managed with a combination of radiation, steroids, and OxyContin®, along with the use of a walking cane. Next came breathing difficulty and coughing from radiation pneumonitis and fibrosis. Those effects are being managed by increasing existing steroids and adding a nebulizer.
As mentioned in my prior blog post, the latest issue is a sharp, stabbing pain near the inferior border of my left lung (see Figure 1). This has been accompanied by mild swelling and numbness near the skin surface. Coincidentally, this is also where three permanent radiation tattoos used to guide my prior spleen therapy can be seen (tiny blue dots seen within small, solid red circles in Figure 1). The pain, swelling, and numbness are all located within the red dashed lines—what I reference as a “triangle of pain.”
Recent CT and X-ray imaging of the area hasn’t revealed any anomalies, such as a rib fracture. I was already taking 10mg of OxyContin and 20mg of prednisone daily to help manage the spinal metastases and radiation pneumonitis/fibrosis, the latter of which was increased to 30mg to potentially help with the new rib pain. On chemotherapy treatment day, I also receive an additional dose of steroids via IV as part of the premedication course. Additionally, I have recently been prescribed 300mg gabapentin twice daily, as it can help treat neuropathic pain.
When I got out of bed the day after my first dose of paclitaxel last week, I noticed that the rib area pain was completely gone for the first time. The relief must have been due to the added dose of steroids, as the rib pain returned in full force the following day. I had a similar experience this week following my second treatment with paclitaxel yesterday at Memorial Sloan-Kettering Cancer Center (MSKCC).
While steroids can be very effective, the list of side effects they can cause is extensive. Of particular concern are osteoporosis (bone weakness) and osteonecrosis (bone death). Accordingly, my medical team has put me back down to 20mg of prednisone daily with the goal of finding alternatives for pain management, such as gabapentin.
Another option is to locate the source of pain and treat it instead. For example, it’s possible that the rib area pain that I’m experiencing is referred pain from further cancer progression to my spine. Similar to how the hip/buttock/leg pain I’m experiencing is referred from cancer invasion of the L5 vertebrae. To gain more insight, I will be scheduled for another MRI of the spine in the near future.
With spring around the corner, it would be nice to get these issues addressed so that I can feel comfortable doing normal activities again, such as simply taking the dogs for a walk. Currently, this is difficult to manage with a walking cane and breathing difficulties that are exacerbated by cold weather.
Closing the post on a positive note, like Lester Holt’s signature sign-off segments that help end his NBC evening broadcasts with a reason for optimism, we were fortunate to celebrate Rosie’s 21st birthday as a family this week. It was a beautiful day that started with a trip down memory lane—cooking her pancakes for breakfast. An important reminder that there are still beautiful moments scattered all along the cancer journey and reasons to continue the walk. In fact, up next…Lorie’s birthday and Megan’s high school graduation!
After completing two cycles of chemotherapy with Taxol® (paclitaxel) monotherapy, I had my periodic CT scan last week to determine the outcome. Recall that one full cycle of this therapy is defined as once-weekly infusions of paclitaxel for three consecutive weeks followed by a one week break typically reserved for imaging and/or rest and recovery.
The CT scan results were a mixed bag. On the positive side, the image showed minor decreases in the size of my lung metastases, mediastinal lymph nodes (the mediastinum contains the heart, thymus gland, portions of the esophagus and trachea, and other structures), and the tumor on my spleen since my prior CT scan on November 6, 2018. One lesion in my right kidney increased in size, while others remained stable or decreased.
With regard to cancer that has spread to my spine/bone, it is difficult to distinguish between cancer progression (bad) or treatment effect/healing from prior radiation treatment (good) on a CT image. Cancer that spreads to the bone is often characterized as osteolytic (causing the breakdown of bone), osteoblastic (causing increased bone production), or in some cases a mix of both. My latest scan showed increased bone formation activity with several new sites visualized, which could either reflect a healing response from radiation therapy or cancer progression. On a positive note, the compression fracture at my L5 vertebrae looks unchanged/stable from the prior scan.
Based on the latest CT scan, my medical oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, with Memorial Sloan-Kettering Cancer Center (MSKCC) feel that there is a very real component of my disease that remains sensitive to paclitaxel. As such, they are not inclined to add carboplatin back into the mix not knowing if it will contribute anything other than more side effects. And they certainly don’t want to abandon paclitaxel now, since I am still objectively responding. For example, having me switch to a clinical trial with a lot of unknowns and potential negative impact on quality of life.
So, I’m currently scheduled for two more cycles of paclitaxel monotherapy (3 weeks on, 1 week off x 2) and then reimage. My first dose was infused during yesterday’s appointment without issue (Figure 1).
As mentioned in my prior post, bone pain and radiation pneumonitis that emerged in late 2018 remain my biggest challenge. The bone pain is manageable with a combination of steroids and oxycodone, each with their own side effects. It’s no wonder that skeletal metastases remain one of the more debilitating problems for cancer patients. After experimenting with different treatments, my radiation pneumonitis is currently manageable through a combination of steroids and levalbuterol inhalation solution via a nebulizer.
The latest new issue to surface is a sharp, stabbing pain near the inferior border of my left lung (Figure 2). This has been accompanied by mild swelling and numbness near the skin surface, which is coincidentally where radiation tattoos used to guide my prior spleen therapy can be seen. The pain started just over a week ago and has been getting progressively worse.
Diagnosing the source of this strange new pain occupied the majority of my time at MSKCC during yesterday’s appointment. Normally I would have jumped to the conclusion that cancer had simply spread to that rib area, but my prior CT scan from a mere week ago didn’t show any anomalies. Nonetheless, an X-ray of my chest was taken to rule out a possible rib fracture that could have been caused by any one of my severe coughing attacks associated with the radiation pneumonitis. However, the X-ray came back clean with no sign of fracture.
In the absence of a fracture or cancer progression, other conditions could explain this new pain. One example is costochondritis, an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone. Or the pain, numbness, and swelling could be late effects from prior radiation to the spleen.
To further support that the new pain is related to an inflammatory condition, we monitored the response to increased steroids (anti-inflammatory agents). I’m already taking 20mg of prednisone daily to help with the spinal metastases and radiation pneumonitis, but I always receive an additional dose of steroids via IV as part of the premedication course for chemotherapy. Additionally, I was prescribed 300mg gabapentin twice daily, as it can help treat neuropathic pain. I took my first pill last night.
When I got out of bed today, I noticed that the rib pain was gone. The big question remains—what caused the pain in the first place? And did the double steroid dose eliminate the pain, or did the gabapentin play a role? As the additional steroids wear off over the coming days, it will be interesting to see how this plays out.
Lastly, I addressed the increased depression referenced in my prior post. Following an appointment with my psychiatrist at MSKCC, Dr. Jeffrey B. Freedman, my daily dose of Zoloft® (sertraline HCl) was increased and already seems to be helping. PSA—more cancer patients, especially men, should seek professional help for treating depression.
Call it the Winter Blues, Seasonal Sadness, or whatever. I always found myself feeling sad or blue as the days get shorter and the weather gets colder. Being on chemotherapy doesn’t make the situation any better. Watching the Chicago Bears lose to the Philadelphia Eagles didn’t help.
Since my prior post, I completed my first cycle of chemotherapy (paclitaxel) and started my second cycle on January 2, 2019. Related side effects such as fatigue (extreme tiredness), nausea, taste alteration, and cognitive impairment or ‘chemo brain’ have started to appear. I nap during a good portion of the day and am losing weight from a lack of appetite.
Each morning my pillowcase is covered with silver hair that has fallen out during the night. Being a kind soul, Lorie lint rolls my pillow clean in the morning before I notice. Trying to buy me at least another day of not knowing just how rapidly I’m going bald again. She is such an angel! Worse is the fact that my eyebrows and eyelashes will also fall out.
The bone pain and radiation pneumonitis that emerged in late 2018 remain my biggest challenge. Most days start with a coughing fit that lasts several minutes. This leaves me out of breath and dizzy. I recover in approximately 5-10 minutes and usually have a couple more episodes randomly throughout the day.
I transitioned from a systemic steroid (prednisone) to an inhaler around mid-December. My cough worsened, and I’ve been back on 30mg of prednisone daily for the past week. So far, 30mg of prednisone seems the best at managing my radiation pneumonitis issues. It also helps control my bone pain, although I still require a walking cane to be safe.
Given the aforementioned, our family had a relatively quiet Holiday Season. The highlight was actually staying awake until midnight to welcome the New Year. Perhaps made possible with excess energy from the steroid?
After two more chemo sessions (this week and next), I’ll have a periodic CT scan to determine the effects from two cycles of paclitaxel monotherapy. I’ll provide an update around that time unless anything significant develops in the interim.
If you’re like me, the holiday season often brings with it a certain bittersweet nostalgia. I reflect on the good times, such as Thanksgiving dinner gatherings with kindhearted neighbors who embraced our family after we moved from Illinois. I remember subsequently packing up the car with holiday gifts and traveling back home to celebrate with relatives. Other times I think about loved ones long gone or how life changed following my formal cancer diagnosis back in December 2015. It’s a period filled with both joy and stress.
This holiday season started off rough due to pain associated with cancer progression to my spine along with developing radiation pneumonitis (inflammation of the lung) following palliative radiation therapy directed to tumors in my lungs over the summer. Fortunately, my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, at Memorial Sloan-Kettering Cancer Center (MSKCC) were able to give me a “tune-up” in advance of Thanksgiving and two upcoming speaking engagements.
A new course of steroids (prednisone) helped address the coughing and breathing difficulty from the pneumonitis. Separate palliative radiation treatment to my spine tumors helped reduce, but not eliminate, pain from those sites. Bone is a frequent site of cancer spread and typically indicates a short-term prognosis in cancer patients. Following radiation therapy to my spine, I developed a compression fracture likely due to the destruction of healthy bone from cancer. So far, the remaining pain is mostly managed with oxycodone and prednisone. I still use a walking cane for those infrequent times when the pain breaks through.
Thanks to the successful cancer tune-up at MSKCC, I was able to honor the kind invitation by Matthew Herper, Senior Editor, Pharma & Healthcare at Forbes, to speak at the Forbes Healthcare Summit, held November 28-29, 2019 in New York. Participating in the event was a fantastic experience, although I underestimated the emotional impact and fought back the tears during most of my speech titled “It’s Time to Talk About Dying.” A video replay of the seven-minute talk is available below:
My last dose of systemic (versus local) cancer treatment was in March 2018 after completing nine months of a chemotherapy doublet (carboplatin and paclitaxel). Systemic treatment means affecting the entire body, as opposed to local treatment that targets a single organ or body part. I was exhausted, as I had little if any break in treatment since January 2016. It was suggested that I take a treatment break for a month or two to give both my body and mind some time to recuperate. I agreed.
As my strength, energy, taste, and hair returned, however, I began to appreciate “quality” of life over the “quantity” of life potentially afforded by toxic treatments. It was the best I felt in three years, which made me decide to extend my systemic treatment hiatus indefinitely. As appropriate, I could still opt to receive local palliative treatment, such as external radiation. Those side-effects were minimal by comparison.
In the absence of chemotherapy or other systemic treatment, my disease progressed during the nine-month break. Existing sites of cancer returned to their pre-treatment sizes, such as the tumor on my spleen and certain lung tumors. New locations also appeared, including my spine. None of this unexpected given the lack of systemic therapy.
Initially, I envisioned having a good quality of life for a few months during the treatment break before cancer came roaring back and then succumbing to the disease in approximately six months. In other words, I REALLY didn’t expect to still be here today. Sure, adverse events could still occur at any time without notice, but nothing is suggesting my imminent demise.
Chasing a few sites of cancer using external radiation worked well initially, but as the disease progressed, I found myself spending more time traveling to/from New York for simulation appointments, treatment, and follow-up. I wondered, was it time to revisit systemic therapy?
Since the beginning, Dr. Pfister and Nicole have been terrific about customizing treatments based on the concerns I expressed. This included forgoing treatment that included 5-fluorouracil (5-FU) and/or cetuximab (Erbitux®) based on my reservations. (Disclaimer: Both 5-FU and cetuximab are approved agents with established efficacy and roles in cancer treatment. In addition, I am not a doctor and do not have formal medical training—my treatment decisions are not recommendations or medical advice).
During a recent office visit, we discussed various systemic treatment options. Among the available alternatives, restarting the chemotherapy doublet was proposed. The treatment was quite effective for nine-months, but the toxicities negatively impacted my quality of life. I spent most of that time napping on the couch, many foods tasted bad, and towards the end, my blood counts were slow to return to normal.
Of the two drugs, it was carboplatin that I really disliked. It was the harsher of the two chemotherapeutics. Accordingly, Dr. Pfister proposed starting with paclitaxel alone for a cycle of treatment (approximately one month). It’s “possible” that the paclitaxel was responsible for most of the favorable treatment effects and the carboplatin was only adding toxicity to the equation. Since I’ve always received the two in combination, there’s no way to tell. At the end of the paclitaxel cycle, we can see whether it has any benefit as a monotherapy. If not, we can decide whether or not to reintroduce carboplatin in a subsequent cycle.
Lorie accompanied me for my first infusion of paclitaxel yesterday afternoon. In contrast to recent trips, there were no problems with our commute to MSKCC via train from Pennsylvania. Even better, my infusion was uneventful and started earlier than expected. This left us both in good spirits!
Writing this blog for the past three years has taught me that some readers will view a post as the glass being half full, while others see it as half empty. So, just for the sake of clarity, my prognosis is unchanged. I’m a terminal cancer patient who will eventually succumb to the disease. Exactly how and when no one on earth knows. There are currently no curative treatment options. Palliative treatment might prolong my life to some degree and minimize discomfort.
Despite my extended treatment break and disease progression, I remain healthy enough to continue advocating for myself and others. I plan on doing so for as long as I am able, as there is still more to do concerning issues that are important to me (human papillomavirus/HPV and its link to six cancers, HPV vaccination, talking openly about death/dying, patient rights, and more). In this regard, I look forward to my role as keynote speaker at BioNJ’s upcoming Third Annual Patient Advocacy Summit being held on December 13, 2018, at Celgene Corporation (click here for details).
I cannot recall a time when I was this upset with myself. I’m not a doctor, but I feel my background should have allowed me to piece together the clues and help come up with a differential diagnosis much earlier. The perfect opportunity to participate in my healthcare by joining in the discussion and raising the right questions.
Lorie and I made a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care center last Tuesday (11/6/18). This was due to a fever and breathing difficulty both after going up/down stairs and following coughing episodes. Consider what was known at the time:
X-ray at urgent care suggesting pneumonia
Shortness of breath
History of radiation therapy to lungs in late July/early August
Pneumonia is a bacterial infection that inflames the air sacs in one or both lungs, but a subsequent CT scan and blood work didn’t confirm. Nonetheless, to be safe and in the absence of any other condition, I was prescribed one week’s worth of the broad spectrum antibiotic levofloxacin (Levaquin®) and instructed to follow-up with my oncologist.
During the following week, all of the symptoms persisted. Between the breathing issues and fever, I didn’t feel like doing much other than resting on the couch all day and writing. Thankfully, I did manage to rally for an early birthday barbeque celebration this past Sunday. Then again, perhaps I jinxed myself by celebrating and posting early! Right, @23aloha? 😉
Aside from the aforementioned, recall that I’ve been suffering from back pain due to the progression of cancer to the spine. In early October, I met with a neurosurgeon at MSKCC in advance of receiving targeted radiation to two areas of my spine. To help prevent or minimize the pain flare that is common following radiation treatment to the skeleton, the neurosurgeon prescribed a steroid (dexamethasone).
Among other side effects, patients who are on steroids for three-weeks or longer are more susceptible to infections than are healthy individuals per the product prescribing information. After finishing radiation treatment to my spine on October 18th, I inquired with my health care team at MSKCC and began gradually reducing my dexamethasone dose to zero beginning on November 1st and finishing on November 6th (hint: day of my trip to urgent care, didn’t seem relevant at the time).
As referenced in my prior post, I’m not a big “birthday” person, but I was looking forward to celebrating my 50th milestone this past Monday. I hoped that the antibiotic would work and I’d be feeling somewhat better by then. No such luck. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. No restaurant celebration or interest in my favorite ice cream cake (Figure 1). I took two acetaminophen, which brought the temperature down, and made an appointment the next afternoon to see my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN.
Of course, it wouldn’t be a commute between home and NYC without experiencing some significant delay. This time, a tugboat struck the Portal Bridge and we were held for close to an hour as the bridge was inspected for safety. We arrived at our appointment an hour late, but MSKCC was very accommodating.
After reviewing a new chest x-ray, my medical team offered a differential diagnosis of radiation pneumonitis based on empirical evidence. As soon as I heard the words, it made perfect sense. How could I have missed that! I knew radiation pneumonitis was a potential risk.
Sure enough, the suspicious areas on my chest x-ray correlated almost exactly with the areas targeted with SBRT over the summer. The sudden appearance of symptoms corresponding with tapering of the prior steroid dexamethasone also provided an important clue. It is likely the steroid meant to address potential bone pain flare issues was also treating the radiation pneumonitis. When I stopped the dexamethasone, the radiation pneumonitis was left untreated and suddenly became symptomatic. Ta-da!
While it wasn’t a perfect birthday in the traditional sense (whatever that even means), I prefer to focus on the fact that Lorie, Rosie, and Megan (and the zoo!) were with me on this 50th milestone, and that the recent symptoms weren’t due to further cancer progression (my initial concern) but rather a manageable radiation treatment side effect. Honestly, that is the best gift I could have received.
I would be remiss if I didn’t also acknowledge how important all of the happy birthday calls, texts, gifts, and social media posts were to me. It is one thing to hear from family and friends, but some messages from people I’ve never met in person were also truly lovely and brought a smile to my face. I do read EVERY post! So, to everyone who took time out of their day to acknowledge my birthday—thank you from the bottom of my heart!
“Birthdays are good for you. Statistics show that the people who have the most live the longest.”—Reverend Larry Lorenzoni
I’ve never been a big birthday person. However, I have enjoyed celebrating some of my more significant age milestones so far—16, 18, 21, 30, and maybe even 40. But somehow approaching the big 5-0 tomorrow seems different; more momentous.
It may sound morbid, but my first thought was “at least now I won’t die in my forties.” Making it to 50 somehow sounds better. At my worst in the summer of 2017, Lorie and I were convinced that I’d never even see my 49th birthday.
I’m not sure what makes turning 50 so unique. Perhaps it’s because I’ve finally settled into my skin, even if I have a hard time recognizing my reflection in the mirror these days.
This is encouraging. Most popular cultural conversations around cancer focus on survivors and miracles. Their stories should be celebrated, but we don’t hear from terminal cancer patients as often—perhaps they are too sick or too busy to tell them. It’s their stories that may help inspire big questions and positive change.
“There are only two days with fewer than 24 hours in each lifetime, sitting like bookmarks astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious,” writes Kathryn Mannix in her book, With the End in Mind.
Between those bookmarks is where life takes place. When dealing with a terminal condition, some people decide to focus on quality versus quantity of life, rejecting medical options that might negatively impact their body image, cognitive functioning, mental health, fatigue, sleep problems, physical functioning, pain, and more. They have made their peace—if not with cancer, then with their living and their dying. They want their remaining valuable time to consist of more than a war against cancer.
This is where I have been since March 2018, with no systemic anti-cancer treatments, such as chemotherapy, during the period. My only therapy has consisted of externally targeted radiation to several painful metastatic sites on my spine and a bisphosphonate infusion to help strengthen my bones. Also, I’ve had radiation aimed at the tumor on my spleen as well as a few mediastinum/thoracic nodes to alleviate coughing.
The good news is that radiation mainly addressed the pain originating from my spine. However, destruction of the bone by the tumor left little remaining support for the L5 vertebral body, which subsequently progressed to a compression fracture and resulting pain. In a few weeks, I have an appointment with a neurosurgeon at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss options for stabilizing the spine. I’m also meeting with my oncologist to review recent CT scans showing growth in the pulmonary and thoracic nodes.
That’s the rub with cancer. There is always something going on; something else to be done. Another fire to be put out. Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Indeed, nothing to stand in the way of some upcoming speaking opportunities or tomorrow’s quiet birthday celebration with Lorie and the girls (and our small petting zoo).
We even started my birthday celebration a little early last night. The November evening was cold and dry, which made it possible to use the barbeque one more time this season. So, I grilled some steaks Lorie got from the store, and we had a delicious homecooked meal that everyone seemed to enjoy. Despite my stomach upset and taste issues, I was able to eat about half my usual serving (par for the course these days).
Hopefully, last night is a good omen for what life has in store for me after turning 50. Until then, I’m just going to keep enjoying each day as it comes.
Thanks in advance to everyone for the birthday thoughts and wishes!
Pop the champagne! Today is the publication of my hundredth (100th) blog post for My Cancer Journey.
I still remember typing the inaugural post on November 25, 2015. That was the day I first discovered a suspicious lump on the right side of my neck. In many ways, it feels like yesterday. In other ways, it seems so very long ago.
At the time, I opted to start blogging versus keeping a private journal about my experience with Stage IV oropharyngeal cancer after being formally diagnosed in December 2015. Beyond finding writing cathartic, blogging allowed me to efficiently keep family and friends updated about my disease progression and treatments.
Blogging is a unique experience. And it isn’t for everyone. Sharing your personal thoughts and feelings with the whole world can be unnerving. In the beginning, I often wondered if anyone was even reading my material. Maybe my words weren’t reaching or inspiring anyone. Was I wasting my precious remaining time putting words into the ether?
But over the past nearly three years, I’ve heard from so many of you who have been following my blog and leaving comments after my articles. I’ve even been able to meet some of you. Traffic to my blog has grown substantially. All of this inspires me to keep publishing, to put myself out there, with the hope that my words might be making a difference to somebody.
While I’ve always enjoyed writing, it’s now quite valuable. When fatigue or pain restrict my physical activities, I can usually still muster the energy to write. And like everything else I do in life, I write—with a purpose! Raising awareness for the human papillomavirus (HPV) and its connection to six different cancers, advocating for preteen HPV vaccination, fighting for patient literacy, rights, safety, and more.
Having such a purpose is critical to me. Being a productive member of society, or just being able to go out and do normal things, can make all the difference to a cancer patient. Throughout my journey, cancer has robbed my family and me of many “normal” aspects of life—loss of work, income, physical stamina, future plans, and much more. I’m sure others feel the same.
I used to think that my purpose in life was to develop new medicines and bring them to patients who need them. And it was a very fulfilling job. But cancer gave me a new walk, a new purpose. One that I never saw coming. And so far, no other activity compares with the level of personal satisfaction and self-esteem derived from my current role as an expert patient.
And every time I think that I’ve run out of things to do or say, my cancer journey takes a new turn, and the words continue to flow. Next week I’m scheduled for an additional radiation session targeted to my spleen tumor at Memorial Sloan-Kettering Cancer Center (MSKCC). I will also have another MRI of my spine, as the recent radiation treatment didn’t completely knock out my pain.
Until the next post, thank you for reading my blog and for your interest in me and my cancer journey!
On Wednesday, I finished my fifth and final session of radiation therapy to my troublesome spine tumors at L5 and T7. I received a total of about 30 gray (Gy) to each spine site, which is the unit for radiation measurement of absorbed dose. As hoped, the treatment already alleviated some of my more severe pain, which should only improve as the radiation continues to exert its effects and decrease the size of the targeted tumors.
Sure enough, about 4 am ET Thursday morning I could not keep warm in bed despite layering several blankets (and a 90-pound golden retriever). I was shivering but didn’t have a fever. The buttock discomfort also came raging back, but this pain flare phenomenon is common with both radiation therapy and bisphosphonate use. I couldn’t do much at all yesterday concerning activity, but the symptoms usually resolve within a few days, and today (Friday) I’m already feeling better.
During my appointment on Wednesday, I also had a treatment planning procedure called a simulation for more radiation therapy targeting my spleen (I received about 9 Gy in a single session last time). The simulation is where your treatment site is mapped so you get the right dose of radiation directed to cancer with minimal exposure to nearby healthy tissue. During the procedure, my torso was marked with permanent little tattoo dots and CT scans were taken to identify the area that will be treated in subsequent visits. As of now, the spleen radiation is set for five sessions/appointments at MSKCC in late October.
Importantly, during Wednesday’s visit, I also received the annual influenza vaccine. While you should get the flu shot to protect yourself against the virus, it is also important to help protect many immune compromised cancer patients (and others at risk) who use public transportation and are constantly exposed to people sneezing and coughing. PLEASE get your flu shot today to help protect them (and do it for you!).
Last night, we boarded the 6:02 pm New Jersey Transit train to New York for the first of five radiation treatment sessions at Memorial Sloan-Kettering Cancer Center (MSKCC). My appointment was scheduled for 8:45 pm, so we left plenty of extra time for the unexpected. I had my walking cane, pain medications, and most importantly my wife, Lorie, for support.
As the train departed Trenton station, I noticed the engines ran for only a short time before we began merely coasting. Eventually, the conductor announced over the PA system that our train wasn’t working properly and we’d be returning to Trenton to transfer to another train. No worries, we still had plenty of time. Or so we thought.
Arriving at Secaucus, the last station stop before our destination (New York Penn Station), we were asked to change trains again. This time, due to a derailed train blocking one of only two open tunnels to the city. No estimate for when traffic would be allowed in and out of New York Penn Station again.
Lorie phoned MSKCC to inform them that we were going to be late for my appointment. Their correct response—”just get here safely, we’ll be waiting.”
We briefly disembarked from the train in search of a taxi or Uber to drive the balance of the trip from Secaucus. After being told there was at least an hour wait for alternate transportation, we returned to the train and awaited more information.
Around 9:10 pm, MSKCC called my cell phone for a status update and estimated time of my arrival. Fortunately, the train started moving at that very minute. My best guess was that it would be another thirty minutes before arriving at MSKCC—assuming no other delays. If it was going to be more than an hour, however, MSKCC suggested rescheduling.
At Penn Station, Lorie (aka—momma bear) ran ahead to grab a cab as I hobbled behind with my cane. Sitting is among the most uncomfortable positions for my back at the moment. And three hours of sitting on the train was not what I needed.
In all of my years going to NYC, I’ve never asked a cab driver to get me to a destination as quickly as legally possible. That is, until last night. Lorie relayed our travel situation, my cancer prognosis, and that we were running very late for treatment. The compassionate cabby made terrific time (earning a big tip!), and we arrived at MSKCC around 9:40 ET.
Radiation treatment was uneventful, and everyone at MSKCC was delightful despite the fact I was late and the last patient of the night. However, towards the end of the radiation session, my pain level was increasing. The result of sitting for hours on the train and now being flat on my back for 45-minutes.
Late at night, the trains don’t run express. We caught the 12:14 am local train home. I stood during most of the ride since it was a more comfortable position. We arrived back in Trenton to get our car around 2 am. Home, washed up, and in bed by 3 am. A long day to say the least!
Radiation therapy for bone metastases is associated with limited side effects. However, I knew from my background with radiopharmaceuticals that a pain flare, or transitory aggravation of bone pain after treatment, can occur in 2% to 40% of patients. The exact cause of the pain flare is unknown. It has been suggested to arise through temporary inflammation of the irradiated bone resulting in nerve compression or the release of inflammatory cytokines. Dexamethasone, a steroid, has shown potential for preventing and treating pain flares. This medication was added to my opioid pain treatment arsenal and appears to be helping already.
We go back to MSKCC this evening for my second treatment session. Hopefully, our commute will be less eventful this time! Then I get a break over the weekend before my final three radiation treatments Mon-Wed next week.
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.
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.
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.
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…
It’s a common misperception that the human papillomavirus (HPV) vaccine is intended only for females. However, new data makes it alarmingly clear why both boys and girls should receive this critical cancer-preventing vaccination.
What replaced cervical cancer as the most common cancer associated with HPV infection in the United States? Oropharyngeal (head/neck) squamous cell carcinoma (SCC) in men, according to the August 24, 2018 edition of the Morbidity and Mortality Weekly Report (MMWR) by the Centers for Disease Control and Prevention (CDC).
From 1999–2015, cervical cancer incidence rates decreased by 1.6% per year on average, going from 13,125 in 1999 to 11,788 in 2015. During this same period, oropharyngeal SCC incidence rates increased by 2.7% per year on average among men, more than doubling from 6,966 in 1999 to 15,479 in 2015. See Figure 1.
The decline in cervical cancer from 1999 to 2015 is the continuation of a favorable trend since the 1960s when cervical-vaginal screening increased significantly as Americans endorsed the Pap test. The incidence of cervical cancer plummeted from 21.6 per 100,000 women in 1969 to 10.4 per 100,000 in 1990. According to the latest CDC report, the rate of cervical cancer further declined to 7.2 per 100,000 women in 2015.
Early detection through routine screening has reduced the death rates from cervical (via Pap test), breast (via mammogram), and other cancers. Currently, there is no routine screening test for HPV-associated diseases other than cervical cancer. Oral dental screening may detect cancer or precancerous lesions that may lead to oropharyngeal SCC at an early stage. However, it is difficult to determine from a visual examination which abnormal tissues in the mouth are worthy of concern. The average person routinely has conditions existing in their mouths that mimic the appearance of pre-cancerous changes, which could lead to unnecessary biopsies and invasive testing.
The combination of comparably lower vaccination rates with a lack of screening tools is helping fuel the oropharyngeal SCC epidemic among males. Continuing at its current growth rate, the annual new cases of oropharyngeal SCC in men could reach 17,685 by 2020 and 20,204 by 2025.
The CDC estimates that nearly 80 million Americans are currently infected with some type of HPV, with about 14 million people newly infected each year. If your preteen (boys and girls) hasn’t been vaccinated against this cancer-causing virus yet, talk to their doctor or nurse about getting it for them as soon as possible and please read my passionate plea to parents of preteens.
In my prior post, I discussed a worsening cough and recommendation from my oncologist, Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), to consider stereotactic body radiation therapy or SBRT. This treatment is designed to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.
My radiation oncologist, Dr. Nancy Lee at MSKCC, developed a treatment plan using SBRT to target single tumor sites in each of my lungs and spleen. Starting with my left lung, the first treatment took place Monday, July 23, 2018, and continued on Wednesday and Friday of that same week. The same schedule was used the following week for my right lung. A single SBRT session was used to target the lesion on my spleen, which was completed last Wednesday, August 15, 2018.
The unit for radiation measurement of absorbed dose is “gray” (Gy). I received a total of about 27 Gy to each lung site (9 Gy per session / 3 sessions) and about 9 Gy to my spleen in a single session. In contrast, I received about 70 Gy to my head/neck over the course of 7 weeks back in early 2016 as part of my conventional chemoradiation treatment.
With SBRT, only a small area of your body is exposed to radiation. This means that SBRT usually causes fewer side effects than other types of radiation therapy. According to patient education materials provided by MSKCC, about half of the people who have SBRT don’t have any side effects from treatment.
So far, the SBRT “experience” has been exactly as billed. Other than post-traumatic stress from going through the radiation procedure again, along with some mild fatigue, I haven’t experienced any significant side effects from SBRT. Encouragingly, my cough has already diminished both in frequency and severity. So, the radiation is likely doing its job of shrinking tumors that may be obstructing my airway.
Towards the end of September, I’ll have another CT scan to see how the radiated (and non-radiated) tumors responded to the SBRT. Radiation can cause inflammation in the short-term, which hampers the interpretation of scan results. Accordingly, it is prudent to wait at least a month before imaging.
Until then, I’m continuing my human papillomavirus (HPV) awareness activities and encouraging vaccination of preteen boys and girls to help prevent six cancers linked to HPV. Sadly, there is still a lot of room for improvement in vaccination rates.
In 2017, nearly 49 percent of adolescents received all the recommended doses to complete the HPV vaccination series according to a new study. This is less than a 5% increase from 2016 when 43.4% of adolescents (49.5% of females; 37.5% of males) were up to date with the HPV vaccination series. Today, 51 percent of adolescents still have not completed the HPV vaccine series!
As I compose this post, I cannot get the 1985 song “Radioactive” by English rock band The Firm out of my mind. But perhaps this will make more sense in a moment.
At the end of June 2018, I announced my intent to remain off cancer treatment. A decision so complex that it couldn’t be adequately addressed in a blog post. Simply put, after going through three very difficult therapies from 2016-2018, I decided to emphasize the quality of life over quantity of life.
My last palliative systemic treatment consisted of nine cycles/months of combination chemotherapy (carboplatin and paclitaxel). For a while, it significantly reduced the size of tumors in my lungs and spleen. Most importantly, it prolonged my life—and for that, I am very grateful.
But most cancer treatments are associated with toxicities, which can range from mild to severe. For example, my initial treatment consisted of daily radiation to my head/neck in combination with chemotherapy and was brutal with regard to side effects. In exchange for these toxicities, however, chemoradiation offered the “potential” for a cure at the time. It seemed like a fair trade.
Once my disease spread (metastasized) to distant sites, including my lungs and spleen, the intent of treatment switched from curative to palliative—providing relief from disease symptoms and helping me live longer. Accordingly, I became less willing to endure the side effects of palliative systemic treatment (chemotherapy, cetuximab, etc.) with cure no longer a likely option. This largely resulted in my decision to discontinue treatment.
However, I discussed my worsening cough during a recent appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN. Absent chemotherapy, the tumors in my lungs continue to grow and create additional problems—chronic coughing, wheezing, shortness of breath, etc. To address my cough, Dr. Pfister introduced the concept of stereotactic body radiation therapy, or SBRT, to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.
In fact, localized radiation can infrequently trigger systemic antitumor effects, called the “abscopal effect.” Recent studies presented at ASCO 2018 have explored SBRT in combination with checkpoint inhibitors to potentially improve the abscopal effect with mixed results.
For now, a treatment plan was developed using SBRT to target tumor sites in each of my lungs. Starting with my left lung, the treatment takes place Monday, Wednesday, and Friday of this week. The same schedule will be used next week for my right lung. For reasons still unclear, questions remain regarding the use of SBRT to also target the lesion on my spleen.
Yesterday was my first SBRT session. Lorie stopped me for a quick kiss before I disappeared into the men’s locker room at MSKCC to change clothes. It was traumatic to see the same rooms and equipment from my prior chemoradiation experience. And while my body needs to be kept in the same position for each treatment, thankfully this is accomplished through the use of a mold of my back instead of being pinned to the table by a face/shoulder mask like last time.
The SBRT session was quick and painless. I thought readers might enjoy seeing what the process is like, so embedded in this post is a brief time-lapse video of me holding still on the table in my shorts and shoes as the linear accelerator components twirl around me.
I’ll update the blog with any significant updates on my SBRT experience. For now, I’m simply hoping to get some relief from coughing.
Celebrities, charlatans, homeopaths and other people who are entirely unqualified to advise on medical issues promote genuinely heartbreaking images and stories of teenagers suffering paralysis, bodily pain, convulsions, and even death, which they attribute to autoimmune disorders directly caused by HPV vaccination. It’s a natural claim to make. After all, a vaccine, by its nature, is designed to provoke an immune response.
Scientists believe that sex hormones may play a role, as many autoimmune disorders occur in women soon after puberty. Some examples include systemic lupus erythematosus (lupus), postural orthostatic tachycardia syndrome (POTS), Guillain-Barré syndrome, and complex regional pain syndrome (CRPS). My heart breaks for anyone affected by these terrible diseases, especially children.
The Centers for Disease Control and Prevention (CDC) recommends that BOTH girls and boys begin getting the HPV vaccine series at age 11 or 12. This is because the vaccine produces a better immune response at this age than during the teenage years. For the HPV vaccine to work best, it is also essential to administer prior to coming into contact with the virus. That’s why the vaccine is recommended for children before they grow up and start kissing or become sexually active.
Because autoimmune disorders are more common in women and begin to appear around the age that they receive the HPV vaccine, the potential to use autoimmune disorders to discredit the vaccine is high. In statistics, when two variables are found to be correlated, it is tempting to assume that one variable causes the other. However, this is a perfect example that correlation does not imply causation.
According to the World Health Organization (WHO), since licensure in 2006, over 270 million doses of the HPV vaccine have been distributed worldwide, with many countries monitoring vaccine safety post-licensure. A 2017 report by the Global Advisory Committee on Vaccine Safety (GACVS) concluded that HPV vaccines are extremely safe and found no evidence to suggest a causal association between HPV vaccine and CRPS, POTS or the diverse symptoms that include pain and motor dysfunction.
Why am I so passionate about HPV vaccination? Because I was diagnosed with Stage IV oropharyngeal (head and neck) cancer caused by HPV in December 2015 at the age of 47. After undergoing aggressive chemoradiation treatment, I was cancer-free for six months. Then, in December 2016, doctors discovered distant metastasis (spread) in both of my lungs. Recurrence of this disease is often lethal—no effective treatment exists.
Had the HPV vaccine been available when I was a preteen, I could have been spared a terminal disease and the numerous toxicities of cancer treatment. Parents, I beg you—please vaccinate your children against HPV. Believe in high-quality medical and scientific evidence, not social media anecdotes. Instead of speaking to well-meaning relatives and friends, talk to a knowledgeable pediatrician about the HPV vaccine and make an informed decision. Follow Australia’s example, where the HPV vaccination program is so successful that within 10 years, it is expected that no women will develop cervical cancer there. In doing so, we can eliminate high-risk HPV and the resulting six cancers.
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.
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.
During a recent speaking engagement, there was an audible gasp from the crowd as I relayed a startling statistic from the 2018 Cancer Survivorship Symposium: The mortality rate due to suicide in head and neck cancer patients is more than double the suicide rate of the most common other cancers in the United States. Only male pancreatic cancer survivors have a higher suicide ratio. (see Figure 1)
In the general population, suicide is already one of the ten leading causes of death in the United States. The recent deaths of fashion designer Kate Spade and chef Anthony Bourdain only heighten concerns of “suicide contagion” among mental health experts who fear that vulnerable youth are susceptible to the influence of reports and portrayals of suicide in the mass media.
Following a period of nearly consistent decline from 1986 through 1999, suicide rates in the United States have increased almost steadily from 1999 through 2014. The average annual percent increase in the age-adjusted suicide rate was about 1 percent per year from 1999 through 2006 but rose to 2 percent per year from 2006 through 2014.
Coincidentally, on January 9, 2007, Apple first introduced the iPhone and the percentage of the United States population using any social media soared from 24 percent in 2008 to 67 percent in 2014. In a study published in November 2017 in Clinical Psychological Science, Jean Twenge, a psychologist at San Diego State University, correlates the increasing use of social media, gaming and internet browsing with rising symptoms of depression and suicidal behaviors in teenagers.
One particular at-risk group are cancer survivors, who have nearly twice the incidence of suicide compared with the general population. And patients with head and neck cancer have more than three times the prevalence of suicide compared with the general population.
Depression and hopelessness are the strongest predictors of a desire for death among terminally ill cancer patients. Despite the impact of depression on people with cancer, available studies to assess the efficacy, tolerability, and acceptability of antidepressants for treating depressive symptoms in adults with cancer (any site and stage) are very few and of low quality.
However, there are several other factors than depression that could drive a cancer survivor into suicide. This is especially true for head and neck cancer survivors who deal with unique physical, social, and emotional issues after their treatment.
Significant psychosocial distress in patients with head and neck cancer throughout their illness is well-documented. Depression, suicidality, posttraumatic stress disorder (PTSD), substance dependence/abuse, issues with body image, self-confidence, interpersonal relationships, social stigma, and loss of work and productivity almost universally afflict those with head and neck cancer in some combination.
In one study, hypopharyngeal, laryngeal, and oral cavity and/or oropharyngeal cancers were associated with the highest rates of suicide. Increased rates of tracheostomy dependence – a surgical procedure to create an opening in the neck for direct access to the trachea – and difficulty swallowing and/or feeding tube dependence in these patients may help explain the higher rate of suicide observed. The impact of newer technologies with reduced side-effects, such as transoral robotic surgery (TORS) and intensity-modulated radiation therapy (IMRT), have not yet been investigated.
More than 15 million individuals in the United States are currently living with a cancer diagnosis, 430,000 of whom are head and neck cancer survivors. Many of these patients will experience distortions of voice, hearing, taste, chewing, swallowing, and breathing for decades after successful treatment. Although a relatively rare event, additional research and effort should be devoted to the psychological toll that cancer, treatments, and resulting morbidity have on patients to help prevent more suicides in the future.
 Osazuwa-Peters N, Simpson MC, Zhao L, et al: Suicide risk among cancer survivors: Head and neck versus other cancers. 2018 Cancer Survivorship Symposium. Abstract 146. Presented February 17, 2018.
 Heron M. Deaths: Leading causes for 2013. National vital statistics reports; vol 65 no 2. Hyattsville, MD: National Center for Health Statistics. 2016.
 Gould M, Jamieson P, Romer D. Media Contagion and Suicide Among the Young. American Behavioral Scientist, Vol. 46 No. 9, May 2003 1269-1284.
 Curtin SC, Warner M, Hedegaard H. Increase in suicide in the United States, 1999–2014. NCHS data brief, no 241. Hyattsville, MD: National Center for Health Statistics. 2016.
 Anguiano L, Mayer DK, PivenML, Rosenstein D. A literature review of suicide in cancer patients. Cancer Nurs. 2012;35(4):E14-E26.
 Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907Y2911.
 Ostuzzi G, Matcham F, Dauchy S, Barbui C, Hotopf M. Antidepressants for the treatment of depression in people with cancer. Cochrane Database Syst Rev. 2018 Apr 23;4:CD011006.
 Smith JD, Shuman AG, Riba MB. Psychosocial Issues in Patients with Head and Neck Cancer: an Updated Review with a Focus on Clinical Interventions. Curr Psychiatry Rep. 2017 Sep;19(9):56.
 Kam D, Salib A, Gorgy G, Patel TD, Carniol ET, Eloy JA, Baredes S, Park RC. Incidence of Suicide in Patients With Head and Neck Cancer. JAMA Otolaryngol Head Neck Surg. 2015 Dec;141(12):1075-81.
 Osazuwa-Peters N, Arnold LD, Loux TM, Varvares MA, Schootman M. Factors associated with increased risk of suicide among survivors of head and neck cancer: A population-based analysis. Oral Oncol. 2018 Jun;81:29-34.
In my March 21, 2018 blog post, I wrote about taking a break from cancer treatment. I had just finished my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), which significantly reduced the size of tumors in my lungs and spleen since last summer.
Over the past few years, I received three separate cancer treatments with little reprieve from many of the associated toxicities. At the encouragement of my oncologist, Dr. David Pfister at MSKCC, and with my disease stable since January 19, 2018, it was an opportune time to try and heal – both physically and mentally.
I was nervous about what my cancer would do during the break. Actually, I’m still very apprehensive. But what I experienced during this period exceeded my wildest expectations. In fact, it was nice to feel “normal” for a change. Or at least normal for a Stage 4 cancer patient.
Beginning in April 2018, my energy slowly returned. Just in time for the arrival of beautiful spring weather. After a long winter, I was finally able to get outside and go for extended walks with Humphrey. Flowers bloomed and the landscape was green again. Hope and renewal filled the air.
Feeling more confident about my energy levels, I accepted an invitation to speak at the Global Cancer Clinical Research, Drug Development and Therapeutic Accessibility Workshop in Bethesda, MD on May 1, 2018. The session focused on access to clinical studies and cancer treatment from the patient’s perspective.
On May 3, 2018, I published the second edition of my book A Walk with Purpose. I wrote the first edition in three months, as I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. But now I was afforded much more time to carefully review, edit, and rewrite the story. I’m finally happy with the result.
Shortly thereafter, I spent a week-long vacation with my parents, grandmother, and aunt in Lake Louise, a hamlet in Banff National Park in the Canadian Rockies. The company, weather, food, and scenery were wonderful. For a whole week, I almost forgot about cancer – especially as my appetite returned. So did my eyebrows and eyelashes – thank goodness.
Having not satisfied my zeal to hike, upon my return home from Canada I took Humphrey for a 5.5-mile walk on the Appalachian Trail. The Delaware Water Gap National Recreation Area is home to 28 miles of the Appalachian Trail and is less than a 2-hour drive from where we live. The heat, humidity, and insects were a sharp contrast to hiking in Canada, but it was important for me to get back to another one of my favorite places.
Lorie and I attended a fabulous Memorial Day barbeque with friends. This only reinforced the sense of normalcy during the period, including imbibing a few adult beverages. Certainly not one of my healthier decisions, but for a brief moment, I wasn’t that terminal cancer guy. It was nice.
Just last week, I returned to my hometown of Chicago in connection with the year’s largest cancer confab – the American Society of Clinical Oncology (ASCO) annual meeting. I did a speaking event and second edition book signing for McKesson. In my 25-years working in the industry, I’ve never felt more welcomed as I did that night. It was truly humbling.
During the Chicago trip, I also had an opportunity to see many individuals for the first time in a while. This included Dr. James Gulley of the NIH, Brad Loncar, and many other longtime industry friends. Most importantly, I was able to reconnect with one of my younger cousins for the first time since Christmas 2012. It was exciting to hear about her husband’s brand new coffee business – Sandhill Coffee.
For the past two months, I’ve enjoyed being able to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy. It’s been amazing and definitely the “pause that refreshes” – just as I had hoped.
But there is still so much to be done with regard to education and awareness of the human papillomavirus (HPV), its link to many cancers, and the available prophylactic vaccine. Accordingly, I hope that my “walk with purpose” as an expert patient is far from finished.
Towards the end of June 2018, I’ll have my first CT scan since being off treatment to assess whether my disease is progressing, regressing, or continuing to remain stable. The results of which will profoundly shape my future plans.
Until then, I’m going to continue to maximize this break from treatment and continue to enjoy every moment I can. I’m especially looking forward to school being out soon, so I can spend more quality time with my wife and daughters!
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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).
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!
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.