How Did I Get Here? (A Not So Brief Timeline)
The past few months of my life have been a whirlwind. I’ve gotten a lot of questions about how all of this happened and how I went from working aboard a ship in Svalbard to receiving cancer treatment back home. Rather than trying to explain it piecemeal, I thought I’d put together a timeline of the events that brought me here. So, let’s jump right into it:
Mid May to Mid June - I was on a work contract as an expedition guide aboard a ship in Svalbard. During this time, I began to experience muscle tightness and discomfort in my back, specifically in two locations. It was annoying and uncomfortable at times, but not bad enough to ever keep me from doing my duties. I managed the pain with lots of stretching, plus NSAIDs and some low-grade muscle relaxers as needed. I was convinced this was nothing more than some very bad knots in my back that needed more attention, though during my last week on board my discomfort increased to the point where I received a few pain-killing injections to help me get by.
Mid June - Courtney and I began what was supposed to be a one-month vacation around Europe, starting in France. My back pain continued to increase as I had to haul around heavy luggage, squeeze into taxis and trains, and sleep on uncomfortable mattresses.
Late June - We were now in Turin, Italy. Here, I booked a few appointments with an osteopath, hoping that they would be able to “unlock” the knots in my back. After each session, I felt immediate relief, but overnight the pain would come back even worse than it was before, making sleeping difficult.
Early July - We were now in Bologna, Italy. Here, I booked an appointment with a well-regarded sports massage therapist. Similar to the osteopath, I felt great immediately after the session but even worse overnight.
July 5-6 - I had picked up some stronger pain medication but at this point nothing was relieving my symptoms, so I decided to go to the emergency department at a hospital in Bologna, where I’d spend the next 30 hours. They took me in right away for bloodwork and scans. While doing an ultrasound on my lower back they discovered some cysts on my left kidney that were very concerning. The initial impression was possible parasitic infection but further studies would be needed for a proper diagnosis. Given the ominous findings I requested to be discharged so that I could go home to pursue further testing and treatment.
July 7-8 - I cancelled the remainder of my trip and booked the next flight home, which got me back to Boston around noon on the 8th. I also contacted my PCP and passed along records from the hospital in Italy (thanks to ChatGPT for translating!).
July 16 - CT scans of my abdomen and chest were done. When I read the report I had a hard time wrapping my brain around the finding reading, “Results suggestive of metastatic renal cell carcinoma.” At this point, it was just words on a page. No doctor had told me I had cancer yet, so in my mind it couldn’t be real.
July 18-19 - I had a few bouts of blood in my urine, so we decided it was best to go to the ED at Beth Israel Deaconess Medical Center (BID), where I was admitted overnight. The issue resolved on its own while I was there and I was discharged.
July 20 - I had a kidney biopsy done as an outpatient procedure - no complications. I did feel discomfort in my back later in the evening though as the local anesthetic for the procedure wore off.
July 21 - In the late morning I went to a urology appointment at Mt. Auburn but was told nothing could be done there until I was seen by an oncology team and given a care plan. I was in a great deal of pain now so I went back to the ED at BID where I was admitted again for observation, pain management, and another CT scan. The new CT scan reinforced the findings of the previous one, while adding more detail about the metastatic nature, particularly in my bones (“innumerable lytic lesions”). At this point I fully acknowledged that I had cancer, despite wanting it to be anything else. Prior to being discharged the ED doctor provided me with a referral to the BID Oncology Department.
July 22 - I called BID and was able to secure an oncology appointment with Dr. David McDermott on August 4th.
July 23-27 - These days were extremely uncomfortable for me and I had difficulty sleeping because staying in any one position for more than a few hours became painful, despite all the medication I was taking. On the morning of the 27th, I called the BID oncology office to explain my symptoms and they agreed to move my appointment to later that same day instead of waiting until August 4th. This came as a huge relief as I didn't know how I was going to make it much longer in the kind of pain I was in. We had a great meeting with the oncology team and laid out a treatment plan, which would start soon. It was an incredible turn of events in getting to see the care team that day, and it gave me a huge amount of hope and empowerment that I truly needed in just that moment.
July 31 - I was started on my first daily dose of an oral medication to be taken at home called Lenvima. The drug inhibits tumor growth and cuts off the blood supply feeding the tumor. It felt great to finally start on the pathway to healing instead of just managing pain.
August 3 - In the afternoon we drove up to BID to receive my first drug infusions, Keytruda and Zometa. Keytruda was prescribed to help my immune system fight cancer cells directly, and Zometa was prescribed to help repair the damage caused from the metastatic lesions on my bones. Unfortunately, on the drive up we hit a nasty pothole and it caused me to feel a big, painful jolt in my back. While the immediate pain went away I continued to feel tightness and discomfort in the area between my shoulder blades for the rest of the night.
August 4 - I woke up just after midnight with excruciating pain in my back and shortness of breath. It was bad enough that we called an ambulance and I was transported to BID-Plymouth and admitted for pain management. A CT scan showed a compression fracture of my third thoracic vertebrae. Clearly, the new drug I had just started to strengthen my bones was needed if I could suffer such an injury from merely hitting a pothole!
August 5 - This marked the one month milestone of my hospital visit in Bologna. It’s crazy to think how much my life changed in such a short amount of time.
August 8 - In the evening I was transferred from BID-Plymouth to BID-Boston so that I could be cared for in closer collaboration with my oncology team.
August 9-11 - The big emphasis for these days was getting my pain under control with an appropriate drug regimen. The palliative care doctor put me on a PCA machine that gave me a constant drip of IV dilaudid, plus a button that I could push every half hour for more medication as needed. Given that I was on so many opioids I was also having a big issue with constipation, so there was a huge emphasis on getting me to poop before I developed any serious outcomes like a bowel obstruction. I won’t get into the details of this, but let’s just say that they have some drugs at the hospital that can really get things moving along.
August 12 - My birthday! I started off by being woken up around 2:30 in the morning for a full spinal MRI. My back was already in quite a bit of pain, so laying on a hard, narrow table for an hour wasn’t ideal, but I had to get it done. The toughest part was that it was HOT inside that tube after a while, so when I came out at the end I was drenched in sweat and had the worst dry mouth ever. Fortunately, as the day went on it got better and better. An overwhelming amount of love and support came flooding in over the course of the day. The best part was in the afternoon when my parents came to visit along with my sister and one of my nephews. Together we ate cupcakes to celebrate. The whole thing just put a smile on my face.
August 13-20 - This week I had to meet a few goals to ensure I’d be able to return home. First, I had additional MRIs on my brain and sacrum that needed to come back clean. Thankfully, neither site showed anything unexpected that needed immediate attention. Getting a clean brain MRI was a particular relief for me. The next goal was getting me off of a PCA machine for on-demand pain medication and back onto oral treatment only. To do this, my doctors slowly adjusted my medication regimen over the course of 3-4 days. In an effort to reduce my back pain, I also underwent a 5-day course of radiation therapy on my spine. Lastly, PT started taking me on short walks (<100m) around my floor to start getting some strength back in my legs after being bed-bound for so long. I was amazed at how weak and unstable I’d become in such a short time. Each day during this week came with its own set of challenges including pain, constipation, fatigue, and boredom.
August 21 - I’d still been having significant pain coming from the vertebrae that broke a few weeks ago, so the doctors wanted to look into an additional procedure called a kyphoplasty to help stabilize the fracture and hopefully provide relief from the pain. The procedure would involve a type of “cement” being injected into the open space in the bone to keep it from moving or breaking further. The doctor described it somewhat like getting a cavity filled. I had a CT scan that the doctors would analyze and make a plan of action based on that.
August 22-23 - I started suffering from esophagitis, or inflammation of the esophagus, which is a side effect of the radiation treatment that I received. This caused me to have quite a bit of difficulty swallowing, and therefore, eating and drinking. It also gave me acid reflux and caused a loss in appetite with some intermittent nausea. My back pain continued, but in a more manageable state. I was due for my next infusion of Keytruda on the 24th but had to be an outpatient to receive that dose (it has something to do with insurance, don’t ask for a logical explanation). Due to a mix-up, my infusion appointment was cancelled without me knowing so it needed to be rescheduled.
August 24 - After 3 weeks as an inpatient I was discharged home mid-day! It felt so damn good to be outside for the first time and get some warm sun on my skin and fresh air in my lungs again. After all that time stuck in a hospital bed tethered IVs and monitors I finally felt some freedom again. Unfortunately, in my enthusiasm to be back home I immediately made a mistake that set myself backwards in terms of health. Going from the car into the house is only two steps up so I tried to take them without any help - bad idea. Halfway up the first step I began to lose my balance and had to step back down to the driveway, but did so in a hard, bracing manner. Given my condition, this hard step down caused a lightning bolt of pain to streak across my upper back, leaving me breathless and bent over, trying to process what had just happened. Courtney and my mother quickly got me into bed where I could start recovering and let the pain subside. Not an ideal way to kick things off at home, but hopefully it was just a small blip on the long road to recovery.
While the care I received from the nurses and the entire care team at BID was exemplary, there’s nothing like being at home. The plan going forward is that I’ll continue to have follow-up visits with my oncology team along with my scheduled infusions to ensure I’m progressing on the right track with everything. There have been a slew of challenges so far and I know many more will arise going forward, but I am taking everything in stride and keeping positive that there will be better days ahead.
