To say it has been a bit damp and stormy lately here would be an understatement. This past week is the first time that I can recall being forced into the basement to seek shelter from a tornado warning.
When the local forecast called for warm and dry conditions over the weekend, I couldn’t help but beg Lorie to go for a walk at Tyler State Park. While my breathing conditions deteriorated, a wheelchair had been dropped off on Saturday. Also, I received a prescription for morphine sulfate oral solution to help open up my airwaves. What could go wrong?
I haven’t been able to take our pup Humphrey for a walk in quite some time, so bringing him along was a must. However, I didn’t think through how little I would be able to help. Holding his leash in my hand(s) would be a sure-fire disaster — dragging me behind him at warp speed. Having Lorie hold one end of the rope while steering the wheelchair with the other hand was equally dangerous. Well, we’d figure something out.
I couldn’t see behind me, so I’m not sure what Lorie had worked out. Judging by her two scraped knees, it went about as planned. I felt awful. The struggle between my desire for freedom versus the safety of both Humphrey and Lorie was quite real. Humphrey only wanted to play with other pups he met in the park and who could blame him? But Lorie was running out of breath pushing the wheelchair through the rough gravel path, and it was clear my ill-planned trip needed to come to an end.
Next time we needed to enlist the help of a third person to handle Humphrey or leave him at home. We broke out the water bowl for Humphrey before heading home. Afterward, he quickly fell asleep in the back of the car.
While the trip was otherwise fun, it was a sad reminder that my days of doing speaking engagements and other patient advocacy activities have come to an end: “The spirit indeed is willing, but the flesh is weak.” (Matthew 26:41). Even with the assistance of Lorie, an oxygen tank, and morphine, I couldn’t manage to make the short trip.
This week was also the first anniversary when I returned to Chicago in connection with the year’s largest cancer confab — the American Society of Clinical Oncology (ASCO) annual meeting. At the time, I did a speaking event and second edition book signing for McKesson. I cannot imagine doing that event again now.
Terminal cancer patient releases his first public service announcement (PSA) aimed at encouraging faster diagnosis of head and neck cancer.
It was November 25th, 2015, the day before Thanksgiving and I was working from home. After responding to some emails that morning, I got ready and tiptoed gingerly up and down the cold white tiles of our bathroom floor, waiting for the shower water to heat up.
In the mirror’s reflection, I suddenly noticed something different about the right side of my neck. Placing my hand there, I could feel a solid lump just under my jawline that was about 3 centimeters in diameter (see Figure 1). The left side of my neck appeared normal.
The bulge wasn’t there the day before, or I would have felt it while shaving. It was a solid mass and wasn’t sore at all to the touch. It didn’t feel warm and seemed tethered to its location.
The same article continued with guidance that “in the absence of overt signs of infection, a lateral neck mass is metastatic squamous cell carcinoma or lymphoma until proved otherwise.” The results made me nervous enough to reach for the phone and call our family physician for an appointment that day.
My physician prescribed an antibiotic and instructed me to follow up with an Ear, Nose, and Throat (ENT) specialist if the lymph node didn’t decrease in size or got worse after the weekend. Unfortunately, there was no change in the size of my lymph node and subsequent testing confirmed the diagnosis of advanced oropharyngeal squamous cell carcinoma (OPSCC).
In retrospect, the month of April was a blur. Between selling our former home, purchasing a new home, and my transition to home hospice care, there was a lot to do and consider. Through the fantastic generosity of family and friends, along with a lot of effort from Lorie, amazingly everything went smoothly.
It was tough for me to be a spectator for most of the events mentioned above since I’m restricted from physical activity due to cancer invasion of my spine. As just one example, I’m not supposed to lift more than 5-pounds or risk further fracture.
Making matters worse, I still don’t look like a terminal cancer patient. Other than seeing the hospital beds in our house, I’m sure that some of the people helping us pack questioned why I wasn’t lifting a hand with the move. Whether this was true or not, it affected me emotionally by adding to my depression. I wanted so badly to help.
As mentioned in a recent tweet, what’s been my biggest surprise since being diagnosed with terminal cancer? The people you thought you could count on but were wrong and the people you least expected to be there but rose to the occasion. So, for everyone who contributed financially, physically, or otherwise during the process — thank you from all of us!
I am also frequently asked whether or not I will be receiving further cancer treatment. In this regard, hospice stresses patient “care” over “cure”. The goal is to provide comfort during the final aspect of life. Therefore, no — I will not be receiving further treatment, such as chemotherapy, radiation, or participating in clinical trials. My ideal scenario, as described by Dr. Robert M. Wachter in a recent opinion piece for The New York Times is “death with dignity and grace, relatively free from pain and discomfort”.
Fortunately, our dog Humphrey did his best to reassure Lorie that he’d take good care of me as she returned to work after spring break. More comforting to her, however, are the weekly visits from hospice to monitor my vitals, change the bandage around my patient-controlled analgesia (PCA) device, and adjust my various medications as appropriate. I feel like we’ve made good progress in each of these areas over the past month and life is slowly returning to a “new normal.”
One remaining issue relates to sleeping through the night. The beds provided through hospice are adjustable and comfortable, but I tend to wake up in the early hours and then have trouble getting back to sleep. Accordingly, my nurse Linda suggested switching from Ativan (lorazepam) to Klonopin (clonazepam). Both medications are sedatives that can treat anxiety disorders, but they have differences in how long they work. Klonopin has a slightly longer half-life than Ativan, which may help me sleep through the night.
In other news, I decided to close my Facebook account this week (for a variety of reasons). Going forward, this blog and my Twitter account will serve as the best ways to keep track of my cancer journey. Sign up for new post alerts here using your email address to be notified each time there is a new blog entry.
After completing the third and final palliative radiation therapy (RT) session this week, I was finally able to return home from Memorial Sloan-Kettering Cancer Center (MSKCC) after being admitted on March 8, 2019. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Hopefully, the RT will also provide pain relief in the coming days/weeks and reduce my dependence on the other medications.
Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. With the press of a button, I can activate the fentanyl pump when/if the pain manages to break through the relief being provided by methadone, acetaminophen, gabapentin, and other oral analgesic drugs.
A hospital-style bed was waiting for me in our family room when I arrived home. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. It was a very smooth transition.
Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. Why was I awake so early? Perhaps it’s from the stimulative effects of the steroid medication. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA.
My mind drifts to the principle of Occam’s razor: that the easiest explanation tends to be the right one. My mind is reeling over the fact that today marks another beautiful milestone. One that I didn’t think I would live to see, but am so blessed to witness. Today, Lorie and I celebrate our 27th wedding anniversary (Figure 1).
Many people are thankful to witness the dawn of a new day. My father-in-law used to say that any day he could wake up and tie his own shoelaces was a good day. I couldn’t relate to the sentiment at the time, but now as a terminal cancer patient on hospice—it makes perfect sense.
I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. Happy Anniversary, Lorie!
My initial diagnosis of Stage IV SCCHN was relayed to me in December 2015. Three years later, cancer spread to my spine. If the time from identification of metastatic bone disease to patient death is no higher than eight months, then my expiration date should be somewhere around May/June 2019.
Friedrich Wilhelm Nietzsche, a German philosopher, was quoted saying, “To die proudly when it is no longer possible to live proudly. Death of one’s own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there.”
Today (Friday) represents the two-week mark for my current hospital stay at Memorial Sloan-Kettering Cancer Center (MSKCC). Fortunately, I’ve had several wonderful visitors including Lorie, Humphrey and my oldest daughter, Rosie.
After completing all three palliative radiation therapy (RT) sessions targeting the tumor next to my T8 vertebrae, I plan on going home this coming Monday. Today I had the second RT session without incident.
Assuming all goes well, we have already made arrangements for hospice to come to our house. They will help us achieve the following goals of their care: (a) to help relieve my pain and suffering; (b) to make possible a “good” death; (c) to help Lorie and our daughters; (d) to assist in the search for meaning.
Before Saturday, I was familiar with the potential magnetic field concerns of an MRI but unaware of the bio-effects of radiofrequency fields (RF) that can cause tissue heating in the human body. All of my prior MRI imaging took place on the tried-and-true 1.5 Tesla (1.5T) machines versus the 3.0 Tesla (3.0T) used on Saturday (note: Tesla is the unit of measurement quantifying the strength of a magnetic field). A 3.0T MRI provides higher clarity and better detail because the magnetic field is twice as strong as 1.5T. Based on my recent experience, however, the stronger 3.0T MRI may have been just enough for me to sense the increased temperature in my chest and abdomen towards the end of the scan.
Regardless, given the differences between the 3.0T and 1.5T machines and not knowing what to expect in terms of a potential internal warming sensation likely resulted in my having a rather decent panic attack. Stuck in a tube and unexpectedly feeling like you could be boiled from the inside is a bit disconcerting. Technicians already inform patients about what to expect once a contrast agent is injected as part of the MRI procedure. Going forward, additional disclosure to patients about other differences between T3.0 versus T1.5 might help patients avoid unnecessary anxiety.
While there wasn’t a dramatic progression of my cancer based on Saturday’s CT scan of my abdomen/pelvis, the overall picture looked different when combined with the results from the MRI of my spine and the increasing level of pain. Bottom line: a relatively rapid advancement of cancer in the bone occurred. Taxol alone isn’t cutting it; a change in course is recommended.
Accordingly, we are forgoing the last dose of Taxol this week (should have been dosed today…) and moving forward with plans for radiation therapy (RT) to the new tumors next to my T8 and L3 vertebrae. The goal of this round of RT is to alleviate my pain and potentially reduce dependence on steroids, opioids, gabapentin, etc.
In the background, arrangements are being made for me to be seen in the Early Drug Development clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss clinical trial options after I’m discharged from the hospital. Hopefully, this occurs on Friday, which represents the one week mark for my current hospital stay.
Note:I finished this post and went to walk a lap or two around the hospital floor. Turning one of the corners and who do I literally bump into? My wife came to visit me by surprise! I’m just SO darn lucky and blessed to have her by my side now.
On Friday, I had an appointment with Dr. Nancy Lee, my radiation oncologist at Memorial Sloan Kettering-Cancer Center (MSKCC). Upon arrival in the exam room, we discussed the area of increasing, severe pain in my lower left chest/abdomen region.
Dr. Lee noticed the distension in my abdomen, which had slightly increased in size following my earlier appointment with medical oncology on Tuesday. This gave rise to concerns about a potential gastrointestinal blockage and the desire for more diagnostic imaging. Accordingly, I was sent to MSKCC’s urgent care facility. A short elevator ride, as it is conveniently located in the same building.
During my urgent care visit, I received stronger pain medications via IV infusion, including Dilaudid® (hydromorphone) and fentanyl. The fentanyl seemed to work better, but the amount of relief was still minimal. I was given a patient-controlled analgesia pump that allowed me to dose as needed (Figure 1).
By early evening, a preliminary review of the abdominal CT scan didn’t reveal any significant issues—at least none that would explain the severe pain. For example, there was some moderate growth in the lesion on my spleen, but nothing that seemed to support the level of discomfort I experienced. I was admitted to the hospital by early Saturday morning for more testing.
I made it through the majority of the MRI imaging procedure—before the point where the contrast agent would typically be administered (after approximately 20-minutes). At this point, my chest and abdomen started to feel increasingly warm. It was different from any prior MRI procedure and caused me to alert the medical staff to stop.
My heart and mind raced as I tried to calm down after being removed from the MRI tube. Unfortunately, anxiety got the best of me (as I feared being boiled alive…) and I couldn’t bring myself to finish the procedure. I deeply regretted not requesting a dose of Ativan® (lorazepam) before the MRI.
In the past, I’ve experienced an overall warm, flushed sensation with iodine-based contrast agents during a CT imaging procedure. The feeling is short-lived and not as severe as what I experienced in the MRI. Besides, gadolinium-based contrast agents are used during an MRI procedure, not iodine-based agents. And again, my MRI was halted before the contrast infusion.
Without additional diagnostic information from the MRI, it is difficult to pinpoint the source of my pain. The best option is to complete the remaining ~15-minutes of the MRI with the contrast agent, which hopefully I’ll be able to manage today (Sunday) without issue.
In the meantime, I continue pushing away on my fentanyl pump between getting a few hours of sleep in the hospital. While still in varying amounts of pain, at least it isn’t “constant” as it has been over the past few days. Small progress, but I’ll take it.
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.
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).
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.
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!
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.
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!
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.
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.
Despite the hectic backdrop of late, I’ve been busy researching treatment options for patients like me with incurable squamous cell carcinoma of the head and neck (SCCHN). My first inclination was to pursue another immunotherapy, as there are a lot of clinical trials with novel immunotherapies and combinations currently recruiting. With my disease progressing, however, I felt that perhaps a more aggressive approach backed by data was warranted.
For example, one viable option is the chemotherapy-based “EXTREME” regimen with 5-fluorouracil (5-FU), cisplatin or carboplatin, and the monoclonal antibody Erbitux® (cetuximab). Initially, I discounted this option because 5-FU-based regimens can be associated with significant toxicities. Nonetheless, a multicenter phase III trial in SCCHN demonstrated a 36% longer median overall survival using the EXTREME regimen versus chemotherapy alone (10.1 months vs. 7.4 months, respectively). It was the kind of data-based treatment I was seeking, but I was really against receiving 5-FU.
One of the many nasty side effects from 5-FU is palmar-plantar erythrodysesthesia (PPE), also known as hand-foot syndrome (HFS). There are currently no treatments or preventions for HFS, which is characterized by tingling in the palms, fingers and soles of feet and by erythema, which may progress to burning pain with dryness, cracking, desquamation, ulceration and oedema.
I learned a lot about HFS while serving as CEO of VioQuest Pharmaceuticals. The company was developing a 1% uracil topical formulation to prevent HFS. Uracil is a naturally occurring substrate that directly competes with 5-FU for the enzymes that metabolize 5-FU to its toxic metabolites. When applied topically, the concentration of uracil in the skin greatly exceeds the concentrations of 5-FU, thus blocking the formation of 5-FU’s toxic metabolites. Unfortunately, there haven’t been any updates on the product’s development status since April 2010 according to ClinicalTrials.gov.
When we arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) late Sunday evening, I had already decided that if it came down to the EXTREME regimen as my best option – I would simply forgo further treatment, contact hospice, and let things progress naturally.
Fortunately, my medical oncologist at MSKCC, Dr. David Pfister, suggested replacing 5-FU with weekly paclitaxel, resulting in a chemotherapy regimen known as PCC (paclitaxel, carboplatin, and cetuximab), that has been found to be efficacious and well-tolerated in patients with SCCHN when used as induction chemotherapy. As a result, 5-FU and paclitaxel can be viewed as somewhat interchangeable, but paclitaxel offers a more favorable toxicity profile.
Unlike the two chemotherapeutics, cetuximab is a chimeric human-murine monoclonal antibody (mAb). MAb therapy, the most widely used form of cancer immunotherapy today, is a form of “passive” immunotherapy that often does not require the patient’s immune system to take an active role in fighting the cancer.
Cetuximab targets and binds to epidermal growth factor receptors (EGFR) that are found on the surface of many normal cells and cancer cells. Doing so stops the cell from continuing the signaling pathway that promotes cell division and growth, effectively stopping the cancer by stopping the cancerous cells from growing and multiplying.
I’m a big believer in the power of immunotherapy and believe that my recent treatment with the experimental M7824 (first-in-class, bispecific fusion protein of an avelumab-like antibody linked to two molecules of TGF-beta trap) had a positive effect on my disease. More importantly, there may even be synergy between what M7824 has done so far in combination with the PCC regimen. Even if the PCC regimen only shrinks my lung tumors, the reduction in disease burden could help future immunotherapy treatments be more efficacious.
Having plenty of time to weigh the future treatment options while the bleeding issue with my chest tube was being addressed, I decided that Dr. Pfister’s proposed PCC regimen made a lot of sense. Much to my surprise, I was able to start treatment with the two chemotherapeutics (paclitaxel and carboplatin) on Tuesday and return home that evening. Next Tuesday I will receive my first loading dose of cetuximab.
Regarding the bloody drainage from my chest tube referenced in my prior post, I had a liter of fluid drained using a vacuum-like device connected to my catheter and the drainage returned to a healthier apple juice color. I was started on Lovenox again while continually monitoring the fluid output through the tube looking for the color to change back to bloody. Fortunately, the color remained the same and it looks like Lovenox wasn’t the likely culprit. I’m back on Lovenox and so far, so good.
I never thought I’d say the phrase “I’m back on chemotherapy.” But here I am, continuing the fight. Why? Because Lorie slept at a hotel on our second night in NYC to get some much-needed rest and my mind went drifting down memory lane as I sat alone in the patient room at MSKCC. I thought about all the good times we shared, the family we raised, and how much we love each other. I cried and cried. Suddenly, I knew that if chemotherapy could give me even just one more day with her, it would be worth the drug’s side effects.
And yes, there is still the hope of doing better and living longer than expected. The chances are remote, but not zero. More updates soon…
As discussed in my prior blog post, the recent CT scan at the National Institutes of Health (NIH) didn’t turn out as we had hoped. Not only did the cancer show signs of progressing, but a blot clot was also found in my left iliac artery near my pelvis.
I had been on Lovenox (enoxaparin) for just under one week, when I noticed that the daily drainage from my chest tube looked much more like blood than the usual straw color. Equally disconcerting, the volume of drainage was greater than usual.
At the suggestion of my treating physicians, we stopped at the emergency room at a local hospital in Bucks County (which will remain nameless) on Sunday morning around 10am simply to have a complete set of blood work done. The concern being that the loss of so much blood via the chest tube could necessitate a transfusion.
Fortunately, my hemoglobin levels were okay (low hemoglobin count may indicate you have anemia) and a transfusion wasn’t needed. However, a big problem remained – finding the cause of bleeding coming from my pleural effusion and how to stop it.
One thing was almost certain – the anticoagulant Lovenox likely played a role. Discontinuing Lovenox could help reverse the bleeding, but I would be left with an untreated blood clot that could cause major problems if it moved from its current location. Damned if i do, damned if i don’t.
Quite the conundrum and not one to take lightly. As such, after waiting around the local hospital until early evening with no solutions, nurses, or physicians in sight, Lorie took control and requested that I be immediately discharged. Shortly thereafter she drove us to New York City to visit Memorial Sloan-Kettering Cancer Center (MSKCC). I already had an appointment scheduled with my medical oncologist (Dr. David Pfister) for Tuesday to discuss possible next-steps for treatment, such as chemotherapy, and the drive to NYC is shorter than going to the NIH in Bethesda, MD.
We arrived after midnight, but the urgent care team at MSKCC promptly assessed my condition. More blood work was drawn along with a chest x-ray and CT scan. Simply looking at the chest x-ray, I could tell that the pleural effusion was quite large. This shouldn’t be the case, as I drain it daily.
For now, stopping the internal bleeding is more important than addressing the blood clot – although both issues require immediate attention. I’ve already discontinued the Lovenox and the MSKCC team will assess various options to access and drain the large amount of fluid still trapped in my left lung. The impact of the fluid is not insignificant, as I am short of breath walking short distances or up/down stairs. Coughing also has gotten worse and leads to feeling light-headed or dizzy.
Assuming the pleural effusion can be controlled, the next step would be to deal with the blood clot. One solution is to place a filtering device in the Inferior Vena Cava (IVC, a large vein in the abdomen that returns blood from the lower body to the heart) that could help prevent a pulmonary embolism, which is fatal in one-third of patients who suffer from it. The filter essentially traps blood clots and prevents them from reaching the lungs or heart.
Of course, aside from the aforementioned, I am interested in exploring potential new treatment options and look forward to upcoming physician appointments. Until then, I’ve been admitted to MSKCC for at least a day or two and will provide any meaningful updates via Twitter, etc.
In recent blog posts, I discussed my interest in trying new things, such as transcendental meditation, acupuncture, sound therapy, etc. I connected with other terminal cancer patients and found that some of them were pursuing similar avenues.
Through these interactions, I was introduced and started reading The Tibetan Book of Living and Dying by Sogyal Rinpoche, Patrick D. Gaffney, and Andrew Harvey (thank you @StacieChevrier). I haven’t read much of the book yet, but so far it is chock full of valuable insights and memorable quotes. For example:
“Tibetan Buddhists believe that illnesses like cancer can be a warning, to remind us that we have been neglecting deep aspects of our being, such as our spiritual needs. If we take this warning seriously and change fundamentally the direction of our lives, there is a very real hope for healing not only our body, but our whole being.”
The quote implies that cancer could actually be a good thing. Similarly, in the past I’ve come across posts from other cancer survivors talking about the various ways they were actually “thankful” for getting cancer. I must admit, at the time I found such notions absolutely ludicrous. I certainly wasn’t thankful for having cancer. F@ck cancer!
However, I am starting to perhaps better understand and appreciate the nature of such remarks. For example, as stated in the quote above “…cancer can be a warning, to remind us that we have been neglecting deep aspects of our being.”
In the past, I was very skeptical of meditation, acupuncture, and other spiritual needs. Cancer opened my eyes to at least try new techniques, and now I am a believer and realize the void that they can fill.
Through my cancer diagnosis, I also started connecting with amazing individuals and received overwhelming support from mere acquaintances to complete strangers. Just yesterday, a few of my Twitter buddies (@bradloncar and @SheffStation) made the long trip to rural Pennsylvania just to spend some quality time together. To be fair, it’s completely possible they just came to see our new adorable puppy Humphrey – but, hey, I’ll still take it. (In all seriousness, many thanks to Brad, Sheff, and others that have visited in recent weeks and months!)
I learned to “live in the moment,” appreciate the little things, and slow my life down a bit. Of course, some of this didn’t come by choice, but rather the diminished energy and fatigue of battling cancer.
Before cancer, I was wandering aimlessly with no real goal in life other than a desire for material wealth. Now, I am on a mission – to raise awareness of the human papillomavirus (HPV) and its link to six different cancers with the hope of getting more children vaccinated so they don’t suffer my same fate. I am someone with a deep motivation, a purpose in life, a definite direction, and an overpowering conviction that there will be a reward at the end of it all.
And so, I asked myself: “Am I thankful for getting cancer?” At this point, the fears and future uncertainties prevent me from answering with a resounding “yes.” But, I am warming up to the idea that cancer has changed me for the better, and for that – it is hard not to be thankful.