After completing the third and final palliative radiation therapy (RT) session this week, I was finally able to return home from Memorial Sloan-Kettering Cancer Center (MSKCC) after being admitted on March 8, 2019. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Hopefully, the RT will also provide pain relief in the coming days/weeks and reduce my dependence on the other medications.
Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. With the press of a button, I can activate the fentanyl pump when/if the pain manages to break through the relief being provided by methadone, acetaminophen, gabapentin, and other oral analgesic drugs.
A hospital-style bed was waiting for me in our family room when I arrived home. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. It was a very smooth transition.
Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. Why was I awake so early? Perhaps it’s from the stimulative effects of the steroid medication. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA.
My mind drifts to the principle of Occam’s razor: that the easiest explanation tends to be the right one. My mind is reeling over the fact that today marks another beautiful milestone. One that I didn’t think I would live to see, but am so blessed to witness. Today, Lorie and I celebrate our 27th wedding anniversary (Figure 1).
Many people are thankful to witness the dawn of a new day. My father-in-law used to say that any day he could wake up and tie his own shoelaces was a good day. I couldn’t relate to the sentiment at the time, but now as a terminal cancer patient on hospice—it makes perfect sense.
I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. Happy Anniversary, Lorie!
The proverb that March comes “in like a lion, out like a lamb” implies that the month is a bridge between seasons, beginning with wild, bitter and blusterous winds and rough weather until winding up with mild breezes and gentler weather by April. So, as we turn the calendar to March, I’m hoping that my recent bouts of severe pain due to cancer progression in my spine diminish and go out like a lamb as the month progresses.
My situation is far from unique. Unfortunately, despite significant advances in oncology, cancer patients still often suffer pain. Also, pain in cancer is not one single entity and often doesn’t respond to one drug (or any drug). Interventional pain management techniques, such as a nerve block, are alternative options that can provide effective pain relief when conventional drugs fail or aren’t well-tolerated.
In addition to my weekly chemotherapy infusion, I had an appointment with Amitabh Gulati, M.D., a board-certified anesthesiologist and chronic pain specialist at Memorial Sloan-Kettering Cancer Center (MSKCC) this past Tuesday. Following a physical exam, and based on the suspicion that the new tumor located to the left of my T8 vertebrae is responsible for the referred pain in my left lower chest wall area, Dr. Gulati recommended an ultrasound-guided, paravertebral nerve block. Dealing with severe pain for weeks, I was ecstatic to learn that he could perform the nerve block immediately.
The spinal cord nerves branch out through openings between your 24 vertebrae and connect to internal organs, muscles, joints, ligaments, tendons and other areas and parts of the body (see Figure 1). For example, the nerves emanating from the T8 vertebrae map to the spleen, which is located near my painful left lower chest wall area. Accordingly, it makes sense that a tumor at T8 could send referred pain to that area.
During the nerve block procedure, the numbing effects of the local anesthetic can be felt almost immediately. This is diagnostic, as it helps the physician determine whether or not they are targeting the right nerves in “real time”. Being in the prone position for the entire procedure; however, it was difficult to reach under my body and confirm exactly which areas of my chest were numb.
Due to the immediate numbing effects of the local anesthetic, I was relatively pain-free after the nerve block procedure. Unfortunately, the impact of the local anesthetic can wear off after 24-hours. It can also take up to two weeks to feel the full results of the steroid. Sure enough, I started experiencing episodes of break-through pain by later the next day. Towards bedtime, I was in severe discomfort again despite taking pain medications.
While monitoring the effects of the nerve block, I am also scheduling an appointment with Dr. Nancy Lee, my radiation oncologist at MSKCC. Recall that back in October 2018, I finished the fifth and final session of radiation therapy to both my L5 and T7 vertebrae. I received a total dose of about 30 gray (Gy) to each site, which has provided significant pain relief in my affected hip/buttock area. Shortly, I’m meeting with Dr. Lee to determine whether or not the tumor near T8 could also be a candidate for radiation therapy—especially in the event that the nerve block fails to provide adequate relief.
Aside from managing my pain, I have two more weekly chemotherapy infusions before the next CT scan around mid-March. Depending on the outcome, I can consider continuing with the paclitaxel monotherapy or getting more aggressive by adding a second agent, such as carboplatin. There are also clinical trials to evaluate.
As always, I hope that taking the time to tell my story will help raise awareness about HPV-related cancers and the importance of vaccinating both young women and men to prevent certain cancers. You can learn more about HPV from the Centers for Disease Control (CDC) by clicking here and join the conversation this Monday, March 4th for the second annual International Human Papillomavirus (HPV) Awareness Day by using hashtags like #HPV and #HPVaware on Twitter.
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.
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).
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.
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.
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.
It started with a runny nose and sneezing last weekend. Then came a cough and a mild fever that never went above 99.7 Fahrenheit – that is until the following Wednesday. A brief telephone discussion with the doctor on call late that evening confirmed that a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility was in order.
Following my latest round of chemotherapy, a fever of 100.4 Fahrenheit or higher is disconcerting. It could signal that I’m neutropenic – running dangerously low on a type of white blood cell (neutrophils) that serve as the body’s primary defense against acute bacterial and certain fungal infections. The chemotherapy I’ve been receiving can reduce the number of neutrophils circulating in the blood. Alternatively, a fever could be associated with the flu, which is particularly dangerous this season and breaking records.
Lorie and I started packing for an overnight stay at the MSKCC “bed and breakfast” as we like to call it. Before heading out, I hugged each of our dogs – just in case. Unfortunately, that simple action set into motion a rush of feelings and steady stream of tears down my cheeks. I was a total mess by the time Lorie backed the car out from the garage. Our daughters weren’t home at the time, which in retrospect was probably best.
Upon arrival at urgent care just before midnight, a series of tests were ordered – blood work, urine, chest x-ray, and nasal swab to test for influenza. The blood work came back first and my absolute neutrophil count (ANC) was 800 cells per microliter of blood. With an ANC below 1,000 cells per microliter of blood, the risk of infection increases. Combined with my fever, the medical team informed me that I was going to be admitted to the hospital and given a broad spectrum, intravenous antibiotic Zosyn® (piperacillin and tazobactam).
One by one, the other test results came back normal – that is until the nasal swab revealed I was positive for Influenza B. Influenza A and B are the two main types that routinely spread in humans and cause seasonal flu epidemics. Fortunately, I had received a flu shot this season, as this can help reduce the severity of the virus.
Alas, being hospitalized ended the longest “uneventful” streak of my cancer experience. But for six glorious months, living with cancer was relatively dull and boring. And it was wonderful.
With the source of my fever identified as the flu, I was prescribed Tamiflu® (oseltamivir phosphate) and the general plan was to release me from the hospital as soon as my ANC returned to 1,000 or higher. My prior chemotherapy was given on January 30th, so its adverse effect on my blood counts should be diminishing. Patients often have their lowest number (called a nadir) and highest risk of infection around 7 to 10 days after the start of chemotherapy.
By Friday, my ANC rebounded slightly to 700. Heading in the right direction, but still below the 1,000-level needed for my release home. I felt much better than when I was admitted, which was frustrating. In fact, the fever went away as did a runny nose, sneezing, and coughing.
A repeat blood test was scheduled for very early Saturday morning, with the expectation that my ANC would finally rise above 1,000 and we’d be sent home. Or so I hoped. But the test results showed a slight decrease from the prior day to 600.
I was then given a shot of Neupogen® (filgrastim), which works like a natural protein in your body to promote the growth of new white blood cells. Interestingly, Neupogen was among the very first biotechnology products that I learned about during my introduction to the sector in the late 1990s. It was approved by the Food and Drug Administration (FDA) back in 1991.
My blood counts will continue to be monitored until the ANC improves, but sometimes it can take 24-hours to see the effect of Neupogen. And so, we wait.
In my prior post, I referenced that more and more terminal cancer patients are placing their most private, personal journeys in this entirely public, impersonal domain we call the Internet. Among the blogs about fashion, food, home design, travel, and others, numerous blogs about severe disease and dying have appeared in recent years.
Personally, I find that writing a cancer blog is cathartic – and I’ve been doing it for more than two years now. It’s a great way to share updates and information quickly and efficiently to others who are interested in your health. Blogs and participation in other online patient forums also make the experiences of cancer illness publicly visible, provide alternative voices to that of the medical expertise, and challenge the traditional patient-doctor relations. What a remarkable era for patient advocacy.
But maintaining open and honest communication with your health professionals is an essential part of the cancer patient’s care. Doctors, nurses and patients work best together when they can talk honestly and openly with one another. In this regard, it is essential that patients avoid blogging or posting anything on social media that could jeopardize this relationship. When in doubt, discuss material and images that you plan on blogging with them in advance – especially when the information pertains to participation in an ongoing clinical trial where sensitivities to confidential data may exist.
So far, healthcare professionals have embraced my public visibility. For example, I first met my incredible medical oncologist, Dr. David G. Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), in December 2015. Since that time, I published my memoir, more than 75 cancer blog posts, and three opinion editorials in various media outlets. It’s probably safe to say that I’ve been among his more “uniquely” visible patients during the past two years. But Dr. Pfister and others at MSKCC, along with my team at the National Institutes of Health (NIH), have mainly been accepting and supportive of my blog, book, and photojournalism. And, for the first time, my wife Lorie was even able to snap a quick photo of me with Dr. Pfister this week that I will treasure.
On the topic of this week’s appointment, we reviewed the CT scan results from last Friday’s imaging session. As updated briefly via social media, the results were favorable – stable disease (there were no new sites of disease, and the existing tumors stayed about the same size from the prior scan). Growth in the current tumors or new sites of disease would indicate disease progression and likely necessitate switching therapies. Since that wasn’t the case, and since I’ve handled chemo well with no neuropathy or need for growth factors, the plan is to continue with my current chemotherapy regimen. It consists of a four-week cycle starting with carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. I’ll have two more cycles and then do another CT scan around the second week of April 2018.
After the meeting with Dr. Pfister, I started my eighth cycle of this chemo regimen and was back home by late afternoon. The purpose of this treatment is palliative – to keep the tumors in my lungs and other organs from growing to a point where they cause pain, breathing difficulty, and other issues. It is different from care to cure your illness, called curative treatment.
When treatment is palliative, some patients may feel uncomfortable asking their doctor, “How long do you think I have to live?” The truth is that this question is often awkward for doctors too. Nonetheless, it is a question on the mind of many terminal cancer patients – including me.
Every patient is different, and a statistical prognosis is just an estimate, not a firm prediction. For example, last summer I was in terrible shape (two chest tubes, progressive disease, blood clot and bleeding issues, rapid heart rate requiring a stay in the ICU, etc.). The prognosis at that time was grim, and I wasn’t expected to live more than a few months.
But, effective treatments can sometimes dramatically improve a person’s well-being and even survival. After starting chemotherapy again, cancer regressed, and both chest tubes were removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. I celebrated my birthday, Megan’s birthday, holidays, and welcomed the New Year. It’s now likely that I will be there for Lorie and Rosie’s birthdays next month and even our 26th wedding anniversary in March. I have been given additional precious time.
My disease is still likely incurable, and the current statistical prognosis indicates a median life expectancy of less than one year. I suffer from fatigue, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding critical personal plans and life decisions.
I believe that blogging about life with a terminal illness can offer unique insights into how it is to live with cancer and to face the final phase of life. Hidden away and sequestered, removed from everyday experience, death has made a mediated return to the public sphere through digital and networked media.
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.
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.
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!
Yesterday marked the beginning of cycle number six for my third-line chemotherapy treatment. In this regimen, one full cycle is comprised of four weeks. During week one, two different chemotherapeutics (carboplatin and paclitaxel) are given along with the requisite premedication (steroid, anti-nausea meds, and an antihistamine). During both the second and third weeks of a cycle, I receive only one chemotherapeutic (paclitaxel) and the same premeds. Week four is a holiday/break, with no scheduled treatment that helps provide recovery time for blood counts and other markers. Then the four-week cycle repeats.
Having received five cycles over the past five months, my blood counts are slower to recover – particularly my white blood cells. As a result, my medical oncologist (Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC)) modified the last treatment to forgo the third week of chemo since that is usually about the time that my white blood cells are on the low side. In other words, the most recent two cycles of treatment have been “two weeks on, two weeks off” meaning that I get two chemotherapeutics (carboplatin and paclitaxel) on week one, only paclitaxel on week two and then a two-week break during weeks three and four before starting the cycle over again.
Considering that the latest 2/5 cycles have been reduced in terms of the total amount of chemo I’m receiving, it is encouraging to see that each CT scan still shows decreases in the size of some tumors. For example, take the largest tumor (on my spleen) that originally measured 6.4 cm on its longest axis and 6.0 cm on its shortest axis back in early January 2017. Since starting third-line chemo over the summer, those dimensions have decreased on each subsequent CT scan: 5.4 x 4.8 cm, 3.2 x 2.6 cm and most recently 2.9 x 2.0 cm. Many other lymph nodes in my lungs and abdomen are also now 1 cm x 1 cm or smaller, which is typically the size of a “normal” lymph node—although PET imaging would help inform whether or not there is still disease activity.
But just exactly how unusual or encouraging is all of this? During the MSKCC appointment, I gathered that the general expectation would have been decreased disease from the first treatment cycle, perhaps stable disease on the second cycle and then possibly progressive disease on the third or later cycles. Bottom line: my cancer continued to decrease across all three recent scans, which is better than normally expected.
I’m happy about the results and extremely thankful that I received strong encouragement to give chemotherapy another chance. And it’s not just about tumors shrinking, there have also been meaningful improvements in my quality of life. For instance, at the start of chemotherapy I had not one but two chest tubes placed to help reduce fluid around my left lung. Both have since been removed, as the fluid buildup is gone. Associated side effects with the fluid, such as coughing and difficulty breathing have also disappeared. Oh, and it is a lot easier to shower without wrapping your chest and abdomen in plastic wrap each time to avoid water getting into the tubes!
I’m a curious person by nature and seeking potential answers as to “why” my disease is responding a bit better than expected to the current chemo regimen. As a long-time champion of immunotherapy, I can’t help but wonder about my prior second-line therapy with M7824, an experimental bispecific fully human antibody designed to simultaneously block two immuno-inhibitory pathways (both PD-L1 and TGF-β) that are commonly used by cancer cells to evade the immune system. The aim of this investigational drug is to control tumor growth by restoring and enhancing anti-tumor immune responses.
While receiving M7824 at the National Institutes of Health (NIH) as a participant in their Phase I trial, results from biopsies of both my tumor and pleural fluid provided evidence of immune system activation in the vicinity of the tumor, indicating that the experimental agent M7824 was performing as designed. In particular, the presence of tumor-reactive CD8-positive T-cells, which have emerged as the predominant effector in most cancer immunotherapy settings. In fact, one published study in head and neck cancer patients whose tumors were densely infiltrated by CD3-positive and CD8-positive T cells had a significantly longer overall survival (OS) and progression-free survival (PFS) compared with patients whose tumors were poorly infiltrated.
It’s quite possible that based on the large tumor burden in my body, the immune system activation resulting from M7824 might not have been able to overpower the disease. However, with my tumor burden now having decreased substantially through subsequent chemotherapy, I can’t help but wonder if M7824 could be playing a role in my ongoing disease improvement.
While answering this question is purely academic, it could help inform the design of future combination studies with M7824 and chemotherapy. From a personal perspective, it would also validate that I made the right decision to jump into the M7824 trial after failing first-line therapy (chemoradiation).
As someone with no formal medical training, my initial thought was to have the largest, most accessible tumor biopsied to look for residual immune system activation. Unfortunately, the largest remaining tumor is on my spleen and my oncologist frowned on the prospects of poking needles around that area. A good to time to remind readers that while I have a fair amount of working knowledge in biotech, I always rely upon the wisdom and experience of the treating physician. They’ve gone to med school…I have not.
But I do feel it is very important, to the full extent possible and without substantial added risk to me, to find some signal—even if anecdotal—that M7824 did something good. For my friends in the medical community, please feel free to email me any ideas or thoughts!
 Targeting CD8+ T-cell tolerance for cancer immunotherapy. Stephanie R Jackson, Jinyun Yuan, and Ryan M Teague. Immunotherapy. 2014 Jul; 6(7): 833–852.
 Tumour-infiltrating lymphocytes predict response to definitive chemoradiotherapy in head and neck cancer. P Balermpas, Y Michel, J Wagenblast, O Seitz, C Weiss, F Rödel, C Rödel and E Fokas. British Journal of Cancer (2014) 110, 501–509. doi:10.1038/bjc.2013.640
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.
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.
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!
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.
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.
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.
The purpose of my blog and entries is multifaceted. Some are designed to entertain, while others focus on education and enlightenment for those suffering from cancer and the people who surround them. Others are simply updates on my disease for family and friends.
I don’t consider myself an optimist or pessimist, but rather a realist. Accordingly, I prefer to let the facts in my blog speak for themselves and let you, the reader, decide if the glass is half full or half empty.
For me, life is usually viewed in absolutes. Things are either black or white; rarely, if ever, shades of gray. And I like it this way…nice and neat. This is probably why uncertainty, which falls into the shades of gray zone, doesn’t sit well with me. Unfortunately, living with a terminal cancer diagnosis introduces a fair amount of uncertainty – almost from day one.
It starts with waiting for the initial diagnosis. Is it cancer or not? Usually this is a black or white analysis. The diagnosis of cancer then leads to a myriad of uncertainties. The patient wants to know details about the treatment options, their side effects and quality of life, and whether the potential for cure exists. Lots of gray zone issues suddenly appear.
Although clearly outside of my comfort zone, I’ve been able to successfully navigate the sea of uncertainties for the past two years with one notable exception: how much time do I have remaining? Or at the very least, how much time remaining where my quality of life allows me to function as a productive member of society?
Right now, life isn’t horrible. Sure, I suffer side effects from weekly chemotherapy treatment, such as loss of appetite and fatigue. And I lost my hair but save a ton of money on haircuts and shampoo. Nevertheless, I’m able to enjoy time with family and friends and keep busy with my mission to help raise awareness of the human papillomavirus (HPV), six cancers that are directly linked to HPV, and the available vaccines that could prevent such cancers for others in the future.
Enduring weekly chemotherapy is made easier given the fact that my tumors decreased in size according to my last imaging procedure. Exactly what the tumor regression means in terms of extending my life is unknown. Reality check – published scientific literature still favors that celebrating the New Year isn’t a likely event for me.
However, every patient is different – and there is one absolute truth in life: no one knows exactly when or how they will die. While perhaps the exception versus the norm, we’ve all heard dramatic stories about people living longer than originally expected. My realist nature makes me reject such anecdotes, but it does allow me to consider the fact that progress in treating cancer is advancing at a rapid pace and perhaps my existing treatments will buy me just enough time to receive some new exciting approach that keeps my disease in check.
In the interim, my greatest challenge is what to do with the “space between.” I’m talking about the period between now and when I eventually die, which could be measured in as little as one, two, or three months or as many as several years. No one knows for sure.
For example, I could start to write a new book. Although having recently gone through that process, it is a tremendous investment of time and focus away from spending quality time with family and friends. While it could be a worthwhile sacrifice, I just couldn’t bear the thought of embarking down that road again without knowing that I had sufficient time to finish it.
My other passion, photography, is made challenging since I really don’t know how much energy or how I’m going to be feeling on any given day. This makes scheduling photo sessions weeks in advance to allow adequate preparation time a risky proposition at best. For example, I never could have predicted ending up in the hospital on three separate occasions in July/August (including a trip to the intensive care unit). While life has been quite calm as of late (thank goodness…) there is always the chance that something else is lurking around the corner.
Besides, I was already able to complete two significant bucket-list items this year with the publication of both my memoir A Walk with Purpose and large format, high-quality, coffee table photography book, Strength, Confidence, & Beauty. In the near future, could I really top what I’ve already accomplished in each area?
Equally important to projects that produce legacy materials of a life well-lived, there is that pesky task of providing income to help support my family. I haven’t quite found an appropriate place on my resume for “terminal cancer patient” and I suspect few employers would find that an attractive attribute. On the flip side, freelance work or part-time positions might be workable solutions.
Don’t get me wrong, I’m not laying on the couch every day pondering the “space between” and wallowing in depression. I’ve been keeping plenty busy promoting my books and taking advantage of the plethora of amazing media outlets that express an interest in helping me with my HPV awareness mission. Perhaps that is simply how I’m meant to fill the space between?
At first, I thought if I could simply touch one person’s life through my efforts then I made a difference. But I’ve been inundated with messages from family, friends, and complete strangers who share personal stories about having their children vaccinated for HPV as a direct result of my efforts. Is there anything else I could do that would be as gratifying?
If you or a loved one is affected by cancer, I’d love to hear how you deal with the space between. Rather than messaging me directly, please feel free to comment on this post so that others can benefit from your shared experience.
It’s been a few weeks since my last blog post, so I wanted to provide a brief update. The good news is that life has been rather uneventful – no trips to the emergency room, no new side effects, etc. Let’s face it, we were due for a break!
Last week was not only the Labor Day Holiday but also a scheduled break from chemotherapy to allow my blood counts, etc. to recover. As a result, as of Monday morning I was feeling better than any time in recent memory. My appetite has been good and my energy level afforded us an opportunity to take our puppy Humphrey with us to walk around a local art fair this past weekend.
This week, however, I’m back to week #1 of my treatment schedule starting with a doublet of chemotherapies (paclitaxel and carboplatin). For me, the carboplatin results in greater side effects, particularly stomach upset, decreased appetite, and fatigue. My typical four week treatment “cycle” looks like this:
Week #1: paclitaxel + carboplatin
Week #2: paclitaxel only
Week #3: paclitaxel only
Week #4: holiday/break (no treatment) Lather, rinse & repeat
Before this week’s chemo appointment, I had time and energy to visit with another one of my social media connections for the first time (@BursatilBiotech). She traveled from Argentina to New York with a relative for vacation and we had arranged a brief meeting in the morning while she was in town.
My next chemo break falls during the first week of October. At that time, I’ll have my periodic imaging procedure to see if the cancer is continuing to respond favorably to the treatment. Based on improved air flow to my lungs, I’m hopeful for some continued good news.
In the meantime, I’ve been keeping busy with my mission to raise awareness for the human papillomavirus (HPV), its direct link to six cancers, and the available vaccines that can prevent HPV. For example, my guest editorial on the topic appears in this week’s issue of BioCentury and is freely available to view on their website by clicking here. In addition, last Thursday I did a television interview with CURE Today and you can view the first segment on their website by clicking here. I’m so very grateful to these and other media outlets that have provided me with a platform to advance my mission!
Most importantly, today is another gift that I will truly treasure…as I get to celebrate my youngest daughter’s birthday. Happy 17th birthday Megan!!
Thankfully, yesterday’s cardiology appointment and weekly chemotherapy session were both uneventful. The mystery fever hasn’t come back and I haven’t had any more rapid heart episodes since my last visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility.
Before my first appointment, we had a chance to stop by and say “hello” to Dr. Susan Slovin at MSKCC for a few minutes. She specializes in prostate cancer, clinical immunology, and other genitourinary malignancies. If you’ve read my memoir, you are aware that we’ve known each other for quite some time and that she is a trusted resource and friend. As always, she had some words of wisdom to share and put a smile on our faces. Truly a great start to the day – thank you Dr. Slovin!
The cardiologist did change my medication, as the beta blocker I was taking (metoprolol) also resulted in some fairly low blood pressure readings and lightheadedness when going from a sitting to standing position. But again, minor complaints compared to being in the intensive care unit (ICU) a short while ago. My latest EKG looked fine and I simply need to follow-up in one month.
The consensus seems to be that my rapid heartbeat was caused by a perfect storm consisting of a high fever, low electrolytes, and possible bacterial infection. So, my job is to help make sure not to repeat these circumstances by keeping hydrated and getting plenty of electrolytes.
In terms of chemotherapy, my blood counts are doing well – especially after last week’s doublet of carboplatin and paclitaxel. While I only get carboplatin every three weeks, it does seem to hit me much harder than the paclitaxel alone – especially with regard to appetite. In any event, yesterday’s chemo session went as planned with just the paclitaxel and various premedication.
We finished everything by early evening and planned on staying in NYC overnight rather than rushing to get home. Since I was hungry for a change, Lorie and I went to the hotel’s rooftop bar and enjoyed dinner outside under the stars. It’s moments like those that make everything worth it – and I savor every one.
The rescheduled visit by my sister and her family went well this past weekend. I haven’t made it back to Chicago to see them in a while and I was amazed by how much their two boys had grown since I last saw them. It meant a lot to be able to spend some quality time with all of them and I appreciate their long drive back-and-forth from Illinois to Pennsylvania just to see me (okay, perhaps they really came to see Humphrey…).
The plan for now is continued weekly chemotherapy with a possible break during Labor Day week. Treatment would then resume with an eye towards imaging in early October to see how things are progressing – or perhaps more optimistically “regressing.”
Knock on wood, things will remain calm for a bit as Lorie goes back to work and our girls return to school. It’s always a stressful time for them, so it would be nice for my disease to behave for at least a little while.
Lastly, I recently gave my book website a makeover, so please take a look and let me know what you think at www.awalkwithpurpose.com