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.