Not So Nifty Fifty

I cannot recall a time when I was this upset with myself. I’m not a doctor, but I feel my background should have allowed me to piece together the clues and help come up with a differential diagnosis much earlier. The perfect opportunity to participate in my healthcare by joining in the discussion and raising the right questions.

Lorie and I made a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care center last Tuesday (11/6/18). This was due to a fever and breathing difficulty both after going up/down stairs and following coughing episodes. Consider what was known at the time:

  1. X-ray at urgent care suggesting pneumonia
  2. Shortness of breath
  3. Non-productive cough
  4. Low-grade fever
  5. History of radiation therapy to lungs in late July/early August

Pneumonia is a bacterial infection that inflames the air sacs in one or both lungs, but a subsequent CT scan and blood work didn’t confirm. Nonetheless, to be safe and in the absence of any other condition, I was prescribed one week’s worth of the broad spectrum antibiotic levofloxacin (Levaquin®) and instructed to follow-up with my oncologist.

Figure 1: Still untouched birthday ice cream cake

During the following week, all of the symptoms persisted. Between the breathing issues and fever, I didn’t feel like doing much other than resting on the couch all day and writing. Thankfully, I did manage to rally for an early birthday barbeque celebration this past Sunday. Then again, perhaps I jinxed myself by celebrating and posting early! Right, @23aloha? 😉

Aside from the aforementioned, recall that I’ve been suffering from back pain due to the progression of cancer to the spine. In early October, I met with a neurosurgeon at MSKCC in advance of receiving targeted radiation to two areas of my spine. To help prevent or minimize the pain flare that is common following radiation treatment to the skeleton, the neurosurgeon prescribed a steroid (dexamethasone).

Among other side effects, patients who are on steroids for three-weeks or longer are more susceptible to infections than are healthy individuals per the product prescribing information. After finishing radiation treatment to my spine on October 18th, I inquired with my health care team at MSKCC and began gradually reducing my dexamethasone dose to zero beginning on November 1st and finishing on November 6th (hint: day of my trip to urgent care, didn’t seem relevant at the time).

As referenced in my prior post, I’m not a big “birthday” person, but I was looking forward to celebrating my 50th milestone this past Monday. I hoped that the antibiotic would work and I’d be feeling somewhat better by then. No such luck. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. No restaurant celebration or interest in my favorite ice cream cake (Figure 1). I took two acetaminophen, which brought the temperature down, and made an appointment the next afternoon to see my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN.

Of course, it wouldn’t be a commute between home and NYC without experiencing some significant delay. This time, a tugboat struck the Portal Bridge and we were held for close to an hour as the bridge was inspected for safety. We arrived at our appointment an hour late, but MSKCC was very accommodating.

After reviewing a new chest x-ray, my medical team offered a differential diagnosis of radiation pneumonitis based on empirical evidence. As soon as I heard the words, it made perfect sense. How could I have missed that! I knew radiation pneumonitis was a potential risk.

Radiation pneumonitis and pneumonia share many clinical features, including inflammation of the lung(s). Radiation pneumonitis is one of the most common toxicities of stereotactic body radiation therapy (SBRT). Most cases are either asymptomatic or manageable, with the reported rates of symptomatic radiation pneumonitis after SBRT range from 9% to 28%. However, most patients develop late pulmonary toxicity characterized by localized pulmonary fibrosis (scarring) in the region receiving the high-dose.

Sure enough, the suspicious areas on my chest x-ray correlated almost exactly with the areas targeted with SBRT over the summer. The sudden appearance of symptoms corresponding with tapering of the prior steroid dexamethasone also provided an important clue. It is likely the steroid meant to address potential bone pain flare issues was also treating the radiation pneumonitis. When I stopped the dexamethasone, the radiation pneumonitis was left untreated and suddenly became symptomatic. Ta-da!

The good news is that with adequate steroid treatment, most patients achieve complete recovery from their symptoms. As a result, I was prescribed an initial two-week supply of another steroid (prednisone). But a diagnosis of pneumonitis does increase the risk of developing subsequent pulmonary complications, including fibrosis, a permanent scarring of the lungs.

While it wasn’t a perfect birthday in the traditional sense (whatever that even means), I prefer to focus on the fact that Lorie, Rosie, and Megan (and the zoo!) were with me on this 50th milestone, and that the recent symptoms weren’t due to further cancer progression (my initial concern) but rather a manageable radiation treatment side effect. Honestly, that is the best gift I could have received.

I would be remiss if I didn’t also acknowledge how important all of the happy birthday calls, texts, gifts, and social media posts were to me. It is one thing to hear from family and friends, but some messages from people I’ve never met in person were also truly lovely and brought a smile to my face. I do read EVERY post! So, to everyone who took time out of their day to acknowledge my birthday—thank you from the bottom of my heart!

 

Fifty (50)

“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.

Or maybe after reading and reflecting on mortality during the past three years, it is comforting to see progress in breaking down the cultural silence around death and dying. For example, in recent years, there has been a slew of books authored by “expert patients.” Doctors, scientists, and writers who are reflecting on their departure and have sought to show us different, kinder ways of ending (Atul Gawande, Paul Kalanithi, etc.).

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).

Steak on the grill

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!