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!
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!
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).
“Birthdays are good for you. Statistics show that the people who have the most live the longest.”—Reverend Larry Lorenzoni
I’ve never been a big birthday person. However, I have enjoyed celebrating some of my more significant age milestones so far—16, 18, 21, 30, and maybe even 40. But somehow approaching the big 5-0 tomorrow seems different; more momentous.
It may sound morbid, but my first thought was “at least now I won’t die in my forties.” Making it to 50 somehow sounds better. At my worst in the summer of 2017, Lorie and I were convinced that I’d never even see my 49th birthday.
I’m not sure what makes turning 50 so unique. Perhaps it’s because I’ve finally settled into my skin, even if I have a hard time recognizing my reflection in the mirror these days.
This is encouraging. Most popular cultural conversations around cancer focus on survivors and miracles. Their stories should be celebrated, but we don’t hear from terminal cancer patients as often—perhaps they are too sick or too busy to tell them. It’s their stories that may help inspire big questions and positive change.
“There are only two days with fewer than 24 hours in each lifetime, sitting like bookmarks astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious,” writes Kathryn Mannix in her book, With the End in Mind.
Between those bookmarks is where life takes place. When dealing with a terminal condition, some people decide to focus on quality versus quantity of life, rejecting medical options that might negatively impact their body image, cognitive functioning, mental health, fatigue, sleep problems, physical functioning, pain, and more. They have made their peace—if not with cancer, then with their living and their dying. They want their remaining valuable time to consist of more than a war against cancer.
This is where I have been since March 2018, with no systemic anti-cancer treatments, such as chemotherapy, during the period. My only therapy has consisted of externally targeted radiation to several painful metastatic sites on my spine and a bisphosphonate infusion to help strengthen my bones. Also, I’ve had radiation aimed at the tumor on my spleen as well as a few mediastinum/thoracic nodes to alleviate coughing.
The good news is that radiation mainly addressed the pain originating from my spine. However, destruction of the bone by the tumor left little remaining support for the L5 vertebral body, which subsequently progressed to a compression fracture and resulting pain. In a few weeks, I have an appointment with a neurosurgeon at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss options for stabilizing the spine. I’m also meeting with my oncologist to review recent CT scans showing growth in the pulmonary and thoracic nodes.
That’s the rub with cancer. There is always something going on; something else to be done. Another fire to be put out. Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Indeed, nothing to stand in the way of some upcoming speaking opportunities or tomorrow’s quiet birthday celebration with Lorie and the girls (and our small petting zoo).
We even started my birthday celebration a little early last night. The November evening was cold and dry, which made it possible to use the barbeque one more time this season. So, I grilled some steaks Lorie got from the store, and we had a delicious homecooked meal that everyone seemed to enjoy. Despite my stomach upset and taste issues, I was able to eat about half my usual serving (par for the course these days).
Hopefully, last night is a good omen for what life has in store for me after turning 50. Until then, I’m just going to keep enjoying each day as it comes.
Thanks in advance to everyone for the birthday thoughts and wishes!
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.
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!
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.
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
Bacterial cultures from the tips of two chest tubes that were recently removed revealed growth of a pseudomonas organism on one of them. These are fairly common pathogens involved in infections acquired in a hospital setting. Whether or not this was the source of my fevers, I was prescribed an antibiotic (levofloxacin, 500mg daily) since pseudomonas can lead to other nasty conditions.
I continued running fevers for a few days after starting the antibiotic, but was free of fever for the 48-hours leading up to my next scheduled chemotherapy round. Aside from the mystery fever, my blood counts have been good throughout the three weeks of chemotherapy that I received thus far. Accordingly, my medical oncologist (Dr. Pfister) supported resuming treatment.
On Tuesday, August 15, 2017, Lorie and I took the early morning train to NY so I could receive an intravenous infusion of paclitaxel and then carboplatin as planned. I was quite anxious to resume treatment after a one week break – especially after seeing the decrease in tumor size from the recent CT scan.
I looked at my blood test results from that morning and noticed my magnesium level was again low. Knowing that this “could” have played a role in the recent cardiac event, and that my daily oral magnesium isn’t keeping up, I requested an additional intravenous course of magnesium just to be safe and the medical staff agreed.
The chemotherapy infusions went well and we were able to take an afternoon Amtrak train back home. Benedryl® is one of the pre-medications they give me, so I slept a good portion of the trip home. Lorie was kind enough to capture me asleep with her phone.
After postponing their prior trip due to my hospitalization, my sister and her family are planning to visit us this weekend. Hopefully life is uneventful and we all get to spend some time together.
It was surreal that exactly one week after being in the intensive care unit (ICU) at Memorial Sloan-Kettering Cancer Center (MSKCC), I felt good enough to participate in a scheduled radio interview conducted in Philadelphia on August 10, 2017. Just goes to show there are good days and there are bad days. NPR member radio station WHYY host Dave Heller knew an awful lot about my book “A Walk with Purpose: Memoir of a Bioentrepreneur” and it was so great working with him during my first experience in a radio recording studio. Please take a moment to listen to a replay of this 20-minute segment and other events, along with reading newspaper and other media reprints, under the “In the News” menu tab at my memoir website by clicking here.
Hopefully I continue to feel okay the next couple of days and look forward to seeing family while in town. It should take a week or so for the latest treatment effects to materialize. If not, however, I’m sure Humphrey will provide them with endless hours of amusement!
I would be remiss if I didn’t mention in closing that the start of the new school season is a great time to schedule an appointment with your pediatrician to talk about an important immunization that could prevent 6 cancers in boys/girls. You can learn more about this vaccine in an earlier blog post by clicking here. Had this vaccine been available when I was a child, it could have prevented the cancer that’s killing me. Start the discussion with your doctor – today! And help spread the word by using the #DiscussHPV hashtag in your social media posts.
My recent hospitalization was the longest and most volatile, resembling that of a roller coaster ride at an amusement park. What started with a fever prompting our arrival at Memorial Sloan-Kettering Cancer Center’s (MSKCC’s) urgent care facility in New York last Thursday evening ended up escalating to a brief visit to the intensive care unit (ICU) as detailed in my prior post.
The isolated cardiac event appears managed by medication (metoprolol) and hasn’t reappeared. However, despite numerous blood cultures, chest x-rays, CT scans, and other diagnostics, the cause of my fever – the original reason for my hospital visit – remains a mystery.
After an infectious disease consult, bacterial infection was ruled out as the likely source of the fever and I was taken off the broad-spectrum antibiotics that were being delivered via intravenous infusion. Some of the cultures take time to process, so there is always a chance that something will materialize in the coming days.
One silver lining amidst the tight turns, steep slopes, and inversions on my roller coaster ride was the fact that my left lung appeared much improved in terms of fluid accumulation. This coincided with almost zero drainage from my two chest tubes over the past week or so and it was determined that removing both of them was in my best interest since they weren’t serving any functional purpose and there is always a risk of infection in having two foreign objects in the body.
Insertion of the two chest tubes (one while at the National Institutes of Health and the other at MSKCC) was done under twilight anesthesia, where I was awake but sedated. This is accomplished via administration of a concoction of agents including a benzodiazepine (midazolam) and the narcotic fentanyl. For both procedures, I had little if any discomfort.
Naturally, I expected that removal of the chest tubes would also be done under twilight anesthesia. Much to my chagrin, I was informed that the extraction procedure is normally done bedside and without anesthesia. Two medical professionals arrived at my room at MSKCC and provided a reasonable explanation for the lack of lidocaine or other local anesthesia (the injections would hurt more than the extraction, several would be needed to cover the entire area, and risk that the tubes could be punctured via the needles).
Ever since their initial placement, I’ve been anxious when cleaning or touching the plastic tubes that protruded from the front of my left chest. There was just something unnerving about seeing the foreign tubes that looked like they would be better suited on a Borg, a fictional alien group that appeared in the Star Trek franchise.
As such, you can imagine my surprise as one of the medical professionals from interventional radiology wrapped the first tube around her hand and proceeded to yank it with the same intensity as trying to start a lawn mower by pulling the cord. To be fair, the pain wasn’t terrible and this was one of those situations where speed was definitely better than dragging it out. Nonetheless, I was shocked by the experience and now had an idea what extraction of the second tube would be like.
The first tube was easy by comparison, as it was only placed a short while ago. The second extraction was more difficult as that tube was in place for 4-months and had grown quite attached to me. The first attempt yielded little, if any, movement from the tube. Fortunately, the second try was successful and I am now “tube free.” The tips of both tubes were cut and sent to be cultured in case either was the source of infection that was causing my fevers.
There are plenty of other possibilities to explain my fevers, including the tumors, blood clots, and others. For now, the plan is to carefully monitor my temperature and hope that it continues to respond to Tylenol®. If not, we’ll be back at the hospital.
In view of the current situation, my medical oncologist (Dr. Pfister) appropriately held back on this week’s cycle of chemotherapy to be safe. Encouragingly, the CT scan used to look for pneumonia and other potential reasons for the fever provided a sneak peek of how the tumors responded to the first three weeks of chemotherapy and almost all of them showed decreases in size. This is definitely better than having the tumors grow or stay the same size, but likely doesn’t change the “terminal” nature of my disease. It does, however, hopefully buy me some more time.
It’s great to be back home and I cannot wait to see my daughters and the petting zoo…especially Humphrey! And words cannot begin to express our family’s gratitude for all of the many people that helped out while we were at MSKCC the past 5-days.
On Tuesday, August 1, 2017, I received my third dose of chemotherapy. Everything went well and the next day I was feeling excellent, although some of that can be contributed to the steroid pre-medication. As an added plus, I was looking forward to having family in town for the weekend. Life seemed pretty good.
In the back of my mind, I knew that I likely hadn’t reached the nadir, or lowest point, in my blood counts from the prior chemotherapy. As such, there was a possibility that I might not be feeling 100% for my visitors.
Sure enough, by Wednesday evening I started running a mild temperature. No big deal – it was below the 38 degrees Celsius (°C) cutoff for an “official” temperature. On Thursday I wasn’t feeling energetic and napped most of the day. Then the real fun started.
My temperature rose Thursday evening and the physician-on-call at Memorial Sloan-Kettering Cancer Center (MSKCC) recommended that I come to urgent care to get things checked out. So, Lorie and I made the drive from Bucks County, PA to New York City for the third visit to urgent care within the past three weeks! We debated taking the train as opposed to driving, which would have been faster.
By the time we arrived at MSKCC, my temperature was above 39 °C and I felt the familiar muscle aches and general fatigue that I associated with influenza. Coincidentally, it was the diagnosis of influenza during my first week of chemoradiation in early 2016 that resulted in my first trip to MSKCC’s urgent care facility.
Flu season doesn’t usually begin until October, so this time concern focused on bacterial infection. With my white blood cell counts negatively impacted by chemotherapy, it was possible that my body couldn’t fight off an infection in one of my chest tubes or another location.
I was triaged with the usual battery of blood tests and a chest x-ray before being placed in an exam room. Urgent care was very crowded and I was just happy to have a bed and looked forward to resting horizontally for a while.
I sat on the bed, preparing to relax when I clutched my chest from a sudden, stabbing pain. Lorie could tell from the expression on my face this was no ordinary situation and called for the nurse who arrived immediately to assess the situation. As various cables were connected, I felt my heart racing and Lorie was shocked to see my pulse was 225 on the computer monitor.
Normally, the heart beats about 60 to 100 times per a minute at rest. But in tachycardia, the heart beats faster than normal in the upper or lower chambers of the heart or both while at rest. The episode ended within a minute or so, but tachycardia can disrupt normal heart function and lead to serious complications, including heart failure, stroke, and sudden cardiac arrest or death. Patches were promptly applied outside of my chest wall, which could be used if needed to provide a brief electric shock to the heart to reset the heart rhythm back to its normal, regular pattern.
My heart wasn’t the only one racing as the medical team placed a crash cart outside my door and a sense of urgency filled the room. The contents of a crash cart vary, but typically contain the tools and drugs needed to treat a person in or near cardiac arrest. I was sure that the end was near.
Fortunately, no further cardiac events occurred and I was admitted to MSKCC’s intensive care unit (ICU), where seriously ill patients are cared for by specially trained staff. While I have never had the misfortune to be admitted to an ICU in the past, I was amazed by the both the medical staff and technology used to monitor my condition and knew I was in good hands.
I was placed on an antibiotic and medication to stabilize my heart rate while the team worked to determine the source of the tachycardia and whether or not my episode had caused any damage to my heart. Preliminary assessments ranged from one of my tumors or chest tubes rubbing up against the sensitive tissue surrounding the heart to low electrolyte levels, which are important minerals in your body that have an electric charge. Maintaining the right balance of electrolytes is key for your body’s blood chemistry, muscle action and other processes.
On Friday, my temperature returned to normal and there were no further cardiac events. Still, I couldn’t help but feel that perhaps it was time to contact hospice and let the cancer take its course. I had faced my share of obstacles since being diagnosed with cancer in late 2015 and three recent trips to the hospital resulted in further erosion of my quality of life with two chest tubes, being back on chemotherapy and its side effects, and now the prospect of potential cardiac issues. Lorie and I discussed the topic of hospice and she rightfully pointed out that such a decision shouldn’t be made while sitting in the ICU.
I shared my thoughts about hospice with one of nurses while he assisted me with walking a few laps around the floor. Much to my surprise, he shared with me that it was about 11-years ago that he underwent a bone marrow transplant at MSKCC and how it caused him to pursue a career in medicine. He discounted my outlook on hospice, stating that I was young, up-and-walking, and seemed otherwise quite capable of enjoying further quality time with my wife and daughters. When my quality of life truly diminishes, that would be the time to consider hospice.
Our daughters, Rosie and Megan, traveled by train to NYC and were able to visit me briefly in the ICU. However, they all stayed overnight in a nearby hotel thanks to my father and step-mother. Being in the ICU wasn’t conducive for the planned family visit, which unfortunately got cancelled.
I was released from the ICU to a regular room very late Friday evening. I’ll be here for at least another day or two because the source of the fever still hasn’t been identified. With the fever gone, it appears the antibiotics were successful in treating the infection, but without knowing the source or strain – treatment can be challenging.
Viewing my Twitter feed briefly from the ICU on Friday, I was delighted to learn that Adam Feuerstein, Senior Writer at STAT News (statnews.com), Tweeted that he was dedicating his Pan-Mass Challenge ride to me.
Each year the Pan-Mass Challenge brings together thousands of impassioned cyclists, committed volunteers, generous donors and dedicated corporate sponsors. Together, they strive to provide Dana-Farber’s doctors and researchers the necessary resources to discover cures for all types of cancer.
“Michael, we love you, support you. Your strength will inspire me tomorrow.,” Tweeted Adam. Well, Adam, your Tweet and the many acknowledgements on Twitter helped brighten my day and I’m still here giving cancer everything that I’ve got. Godspeed on your ride and thank you for an amazing gesture!
And special thanks to all of Lorie’s friends who have helped our daughters get to NYC and/or babysit our small petting zoo while we’re away. It’s a lot to ask, and we’re so grateful for the help since it is one less thing to worry about. Humphrey appears to have made new puppy friends, as evidenced by the photos and videos that I love seeing.
It’s Saturday afternoon as I finish writing this blog update. Lorie, Rosie, and Megan are able to visit longer since I’m in a regular room now. Seeing people in the hospital isn’t tops on most teen’s lists of favorite activities, but it means so much to me having them here.
Friday marked the last day of my seven week chemoradiation therapy journey. Aside from some routine follow-up appointments and recovering from lingering toxicities, I will now wait several months for the repeat PET scan that will provide some insight as to whether or not the treatment was a success. Of course, I’m trying to stay optimistic that the combination of radiation and chemotherapy treatments that I endured over the past seven weeks successfully eliminated all of the cancer – but there is always that nagging thought that it did not and that leaves a pit in my stomach.
Fortunately, on Friday I was able to take home with me the dreaded radiation mask (see enclosed image). No longer will I need to wear this mask for daily radiation therapy, which makes me VERY happy. The nuclear technicians offered humorous insight as to what other patients do with their masks after radiation treatment is done. Some make decorative items, such as flower pots. Others simply burn them in a sadistic revenge ceremony, which I must admit holds a certain type of appeal. Although it somehow conjures up thoughts of Darth Vader’s helmet, last seen burning in a funeral pyre in ‘The Return of the Jedi,’ winding up in the hands of Kylo Ren in the ‘Star Wars: The Force Awakens’ movie…
Regardless of what I do with my mask, I am enjoying a certain freedom knowing that I’m no longer beholden to a daily treatment schedule and that I have received the very best treatment possible for my disease by the entire team at Memorial Sloan-Kettering Cancer Center (MSKCC). It is amazing how quickly the seven week treatment cycle passed and it all seems like a blur right now. While I did not look forward to the daily radiation treatment, the appointments were at least a reminder that I was doing something to treat the disease. Now I have that same empty feeling that plagued me when I was first diagnosed and searching for the best treatment – the feeling that I should be doing something but cannot.