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.
“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!
On Wednesday, I finished my fifth and final session of radiation therapy to my troublesome spine tumors at L5 and T7. I received a total of about 30 gray (Gy) to each spine site, which is the unit for radiation measurement of absorbed dose. As hoped, the treatment already alleviated some of my more severe pain, which should only improve as the radiation continues to exert its effects and decrease the size of the targeted tumors.
Sure enough, about 4 am ET Thursday morning I could not keep warm in bed despite layering several blankets (and a 90-pound golden retriever). I was shivering but didn’t have a fever. The buttock discomfort also came raging back, but this pain flare phenomenon is common with both radiation therapy and bisphosphonate use. I couldn’t do much at all yesterday concerning activity, but the symptoms usually resolve within a few days, and today (Friday) I’m already feeling better.
During my appointment on Wednesday, I also had a treatment planning procedure called a simulation for more radiation therapy targeting my spleen (I received about 9 Gy in a single session last time). The simulation is where your treatment site is mapped so you get the right dose of radiation directed to cancer with minimal exposure to nearby healthy tissue. During the procedure, my torso was marked with permanent little tattoo dots and CT scans were taken to identify the area that will be treated in subsequent visits. As of now, the spleen radiation is set for five sessions/appointments at MSKCC in late October.
Importantly, during Wednesday’s visit, I also received the annual influenza vaccine. While you should get the flu shot to protect yourself against the virus, it is also important to help protect many immune compromised cancer patients (and others at risk) who use public transportation and are constantly exposed to people sneezing and coughing. PLEASE get your flu shot today to help protect them (and do it for you!).
Late last month, I experienced severe pain in my left hip/buttock that warranted a trip to the urgent care facility at Memorial Sloan-Kettering Cancer Center (MSKCC). With random movement, a sharp, electric-like pain radiated down my left leg. It was like nothing I’ve experienced before. Lying down on my right side made the pain better, but sitting or climbing stairs was unbearable.
During my stay at urgent care, an x-ray of my pelvis showed no evidence of fracture. There was also no indication that cancer had spread to that area, which was naturally my initial concern.
While waiting to see the doctor, I was given a non-steroidal anti-inflammatory drug (NSAID) called ketorolac via intravenous infusion to help address the pain. It worked so well that I was later released. The pain was attributed to an inflammatory condition, possibly bursitis according to the discharge papers.
Since the cancer wasn’t responsible for my pain, I was instructed to follow up with a local orthopedist for further evaluation and treatment. In the meantime, I found it unusual that oral NSAIDs and even narcotics like oxycodone failed to address my growing pain.
An x-ray of my spine was taken by the orthopedist, which also came back normal. I was prescribed physical therapy for 4-6 weeks and a steroid regimen to help address inflammation that was possibly putting pressure on my sciatic nerve. I required a walking cane, as it felt like my left leg was going to collapse every time I experienced a bolt of pain.
Completing the steroid regimen and two weeks of physical therapy, I was feeling only marginally better. During a follow-up appointment with my orthopedist, I received a steroid injection directly into the left sacroiliac (SI) joint region. I was told pain relief could take a few days, for which I anxiously awaited.
At this point, I was due for a periodic CT scan of my chest, abdomen, and pelvis at MSKCC. It would reveal how cancer responded to the recent stereotactic body radiation therapy (SBRT) directed to three areas—a lesion in each lung and also my spleen. It was hoped that the SBRT would decrease the size of targeted tumors in the lungs enough to alleviate a nagging cough that I developed.
Coincidentally, I became quite familiar with pain arising from metastatic bone disease (MBD) during my tenure as CEO of Cytogen Corporation. The company had developed and commercialized Quadramet®—an injectable radiopharmaceutical used to treat bone pain associated with cancer.
Pain from MBD results from bone destruction and fragility. A pain scale measures a persons pain intensity based on self-report, with pain levels between 0 (pain-free) and 10 (pain that makes you pass out). Since late August, my daily pain went from a low of 5 at rest up to 11 with movement (“Up to eleven” coined in the 1984 movie This Is Spinal Tap).
Since I was scheduled to travel to MSKCC for the CT scan, I asked my treatment team if an MRI of my spine made sense to plan for that same day. I couldn’t help but think the severe pain was caused by cancer progression to bone. They agreed, and both imaging procedures were scheduled for September 19, 2018.
Meanwhile, after completing oral steroids, two weeks of physical therapy, a steroid injection, and walking with a cane, my resting pain level slightly improved. Regretfully, I second-guessed my request for an MRI of my spine due to the modest pain improvement and canceled that appointment after consulting with my treatment team.
The day of the CT scan, my pain was back to full force. I knew that I couldn’t hold still long enough to complete the CT scan. It took 10 mg of oxycodone to sedate me and alleviate my pain just enough to get through the 10-minute procedure.
Yesterday, Lorie and I reviewed the CT scan results with my oncologist at MSKCC, Dr. David Pfister, and Nicole Leonhart, ANP, RN. My cough disappeared, so I was very confident that the inferior left hilar node decreased in size following SBRT. The radiology report confirmed that it declined from 1.3 cm x 1.3 cm on the prior scan to 0.6 cm x 0.6 cm.
Unfortunately, that was the only good news contained in the CT scan results. While the tumor on my spleen also received radiation, it nearly doubled in size from 4.0 cm x 2.7 cm to 7.4 cm x 5.1 cm. Could this be inflammation following the radiation treatment, or did it genuinely represent tumor growth? No one could be sure based merely on imaging.
Correlation of the findings using an MRI was needed. Immediately, I regretted second-guessing my decision to get an MRI done while in town for the CT scan last week. Amazingly, I was able to get an MRI done the same day of my appointment at MSKCC. The results confirmed that cancer had now spread to my T7, L5, T5, and S2 vertebral bodies (see Figure 2).
When cancer spreads to the spine, it can replace your bones or compress your nerves, resulting in compression fractures, pain, and reduced blood supply to the spinal cord. Fortunately, cancer has not yet contacted my spinal cord. Otherwise, I would likely have been admitted for emergency spinal surgery. Spinal cord compression needs to be treated right away to try to prevent permanent damage to the spinal cord.
After finishing my third cancer treatment in March 2018 (nine months of combination chemotherapy—carboplatin and paclitaxel), I decided to take my first treatment break after being diagnosed (see Figure 3). As I had hoped, the past six months were precisely what I needed and left me feeling refreshed and reenergized.
Assuming my bone pain is addressed, I’m faced with the option of pursuing novel therapies or merely continuing my treatment hiatus. For example, I have not yet been exposed to cetuximab, a biologic agent that blocks the epidermal growth factor receptor (EGFR) and is FDA approved for the treatment of metastatic colorectal cancer, metastatic non-small cell lung cancer, and head and neck cancer. Alone or in combination with an investigational agent, cetuximab could be a viable treatment option that doesn’t negatively impact my quality of life in the same manner as chemotherapy.
As soon as I get past the bone pain issue, I plan on meeting with Dr. Pfister to continue hearing his thoughts on potential next steps that could achieve my goal of maintaining a decent quality of life while still pursuing active treatment. To be continued…