The Gift of Time
My World Turns Upside Down – Again
Sadly, I am not unfamiliar with cancer, having lost my husband of 30 years to leukemia in 2010. A few years after losing him, I was introduced to a wonderful man who had lost his wife of 40 years to breast cancer. We were married in June 2018. I was 62. We had a beautiful wedding surrounded by our families, and were looking forward to our second chance, a fresh start, filled with plans of spending time with those nearest and dearest to us.
Six weeks after our wedding I was diagnosed with pancreatic cancer. Needless to say, we were shocked to the core. Hadn’t we already suffered enough from the cancer beast? My symptoms had come on quickly. I began experiencing pain in my back, then abdomen, which intensified almost daily. I called my GP who prescribed Prilosec and took me off Fosamax, which I was taking for osteoporosis. The pain persisted and was worse while lying down so that I had to sit up through the night. I knew something was not right. After a few more tests, my doctor ordered a CT scan. She called the following day, with the devastating news that I had a mass on my pancreas. Our beautiful new world shattered in an instant.
Our Past Coincidentally Becomes Our Future
One of the many coincidences my new husband and I discovered was that Dr. Jeffrey Wisch, at Newton Wellesley Hospital, was the oncologist who had taken care of both of our late spouses. Even though it had been years since either of us had seen or spoken with him, he was the first person we thought of upon hearing of my situation. I sent him a text shortly after I hung up with my GP, and he replied immediately and asked me to call him. When I did, I learned that he was no longer at Newton Wellesley, where he had started their new cancer center, but was now a Senior Physician in the Division of Gastrointestinal Oncology at the Dana Farber Cancer Institute in Boston. We were amazed. This was our first glimmer of hope.
We met Dr. Wisch along with Dr. Tom Clancy, the Director of Pancreatic Surgery, at 8:00 the following morning, armed with a disc containing my CT scan. We were deer in the headlights when they told us I had locally advanced pancreatic cancer, and that it was inoperable – the tumor was tightly wrapped around my celiac artery. Dr. Wisch explained the course of treatment would be FOLFIRINOX chemotherapy, a cocktail of four different drugs to be administered every other week for a period of three months, with the goal of knocking it back enough that hopefully I could then have surgery.
The Treatment Journey Begins
Step one involved the surgical insertion of a double mediport in my chest to receive the chemotherapy. The difficult infusions at Dana Farber (where the nurses were angelic and so helpful) were accompanied by going home after each treatment with a pump that continued to push more chemo into me for another 48 hours. My worst day was always the day they unhooked me from the 5FU pump, since there was so much in my system at that point that it made me feel really sick. But in the week between treatments I would start to feel a little better, only to have it start all over again the next week.
After three months of this, my scan showed that I needed to keep going with the treatment to shrink the tumor enough for surgery. Ugh! But okay, bring it on.
During my 11 rounds of chemo I had two hospitalizations due to blood clots, and a short delay in treatment due to an infection in my port. Towards the end I had begun to develop neuropathy in my hands and feet, so Dr. Wisch reduced the amount of Oxaliplatin, one of the drugs in my cocktail. But other than that, I withstood the treatment fairly well. It was no fun, that’s for sure, but I got through it.
Another Heartbreak and More Hope
After all this treatment, another scan showed I remained inoperable. Since surgery was considered to be the only “cure” for this disease, this was heartbreaking news. There really didn’t seem to be much more they could do, other than provide palliative radiation which would not free me from disease.
At this low point, I was wiped out and losing hope. I needed to think very hard about whether I wanted any more treatment at all. Larry understood, having been through this moment before with his late wife, and was supportive of whatever I decided.
But within a few days I had a call from Dr. Wisch who set up an appointment for me to see Dr. Joseph Mancias, a radiation oncologist at the Dana Farber. He suggested I see Dr. Christopher Crane, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City. Dr. Crane was having promising results with a trial using SBRT, then a new form of high-dose, pinpointed radiation therapy. Dr. Wisch said from his conversation with Dr. Crane, that based on the positive effects of the chemotherapy I had received, it seemed I might be a candidate for this treatment.
We Go To New York City
We decided we would certainly give this treatment a try, if Dr. Crane would take me on, and so we went to NYC to meet with him. After reviewing my scans and blood work he told us he could treat me, explained the process, and once again, we had another glimmer of hope. There was, in fact, something more that we could do.
After having gold “seeds” implanted around my tumor (a guide for the radiation), Larry and I took the following week off and flew to Florida to put our toes in the sand before treatment began the following week, a much-needed break for both of us.
For five weeks, I had radiation every day, five days a week. Each radiation treatment lasted only about 20 minutes, and despite the dosage I felt okay throughout. I did have to take an oral chemo as well, but it was much easier to tolerate than the FOLFIRINOX. Fatigue and a little nausea were my biggest issues during that time, which wasn’t too bad but meant we did very little sightseeing in the Big Apple.
When the treatment was completed we met with Dr. Crane one last time before leaving the city. He was pleased with how things went, saying though they were able to reach 100% of the tumor, I would need to be closely watched from then on. Before leaving his office, I asked what advice he might have for me, and all he said was, “avoid stress as much as possible.”
“Avoid stress” was a profound statement for me, and I continue to hold it closely in my thoughts on a daily basis.
All’s Well That Ends Well, So Far
We returned to Dr. Wisch and the team at Dana Farber to begin the follow up care. They waited a few months to scan me following radiation, as it causes inflammation at the site and make the tumor look bigger on the scan, even though it is “dead.” When I did have my scan and bloodwork, my tumor marker CA19-9 was in the normal range for the first time since diagnosis, and the scan looked good. I was checked every three months after that, and after each good scan we felt we have been given another season and continued to squeeze joy out of every day.
After a year of post-treatment follow-up, our wonderful doctor, and friend, Jeff Wisch, decided it was time for him to take a much-deserved retirement. He left me in the excellent hands of Dr. James Cleary at Dana Farber, who has been taking care of me since then.
Déjà vu and a New Reality
Dr. Cleary had been watching certain spots in my abdomen and lungs, which for the most part were stable. After my scan in September 2020, however, he saw some growth in one of them and wanted to put me back on chemo. It was to be FOLFIRINOX again and I would never be able to be off it. This was such sad news, since I still felt really well.
I told Dr. Cleary that I had to think about it, and that I might choose not to have the treatment. As long as I felt well, and my quality of life was excellent, I wasn’t willing to give that up. He understood and agreed to take another look in two months and see where we were.
That was two years ago, I still have not gone on chemo, and I continue to feel really well.
In April, 2022, Dr. Cleary found a lymph node that had grown to the point of needing treatment. The good news was that in the two years since I had received the high dose radiation at MSKCC, Dana Farber had installed a new MRI-guided radiation machine, and Dr. Mancias decided they could treat this spot with radiation.
In June 2022, I had five days of treatment which gave me the same amount of radiation received in five weeks two years ago! Instead of 20 minutes per session, each lasted about an hour in an MRI tube. This caused me some consternation, as I am extremely claustrophobic, but they are very good at what they do, and got me through it, with the help of Ativan and Zofran.
Through these past four years since diagnosis, I have met and spoken with many fellow pancreatic cancer patients. It is difficult to see so many not do as well as I have, and some who have not made it. I have just had my first post-radiation scan, all still looks good, and I continue to feel really well. But each scan, especially this last go-round that found something that needed attention, brings up all the anxiety and fears familiar to anyone with this disease. Larry and I both hang on tight as we ride this scary and emotional roller coaster.
I truly believe that each one of my doctors has gone above and beyond “the normal treatment.” They have listened carefully to me, understood me, and have come up with treatment plans that have allowed me to continue to live a full and beautiful life for as long as possible. They have given me the gift of time, for which I am deeply grateful each and every day. As strides are made on better treatment for pancreatic cancer, my hope grows for all of us who are on this path together.
Being surrounded and supported by positivity, love, and my outstanding medical team has given me the strength to get this far in my journey.