For several years, I have used this blog site to write about the Camino de Santiago. It started as a way of keeping family and friends aware of my progress. Later, with the unexpected and untimely death of my wife, Jean in June of 2018, the blog site took on an additional meaning. It was therapy for the intense grief I was feeling. I continued to write and post about Camino friends when we met for a mini reunion in Madrid in 2019 and again with my two short Camino adventures in 2022. The first from Sarria to Santiago with my brothers and my children and another short Camino from Santiago to Finisterre and Muxia following that in 2022. Now, I would like to take some time to tell the story of another Camino. My diagnosis of a blood cancer, Hodgkin’s Lymphoma, it’s effect on me and my several months of treatments. I hope that my telling of the experience will help others.

The story begins several years ago, perhaps in 2017 when I noticed three small lumps on the right side of my neck. I mentioned them to Jean. Jean, of course insisted that I make an appointment to see a doctor. I was not concerned about the lumps. I was getting older and lumpier. There was never any cancer in my family and I was in excellent health. Of course I went to see my Primary Care Doctor anyway. He referred me for a biopsy which came back “inconclusive”. I thought that perhaps I would check again in a year or so. What I did not know at the time was that within a year my beloved Jean would suddenly and unexpectedly die in an emergency room while we were in Connecticut attending a wedding. She was the healthiest, most alive person I knew. I was suddenly and totally an emotional wreck for the next two years and did little to nothing to take care of myself. This period of grief and self pity was immediately followed by two years of COVID isolation and all that came with it for all of us.

Suddenly, it is 2022 and plans to walk the Camino with my brothers Joe, 79, Greg, 63, daughter Amanda, 46, son John 41, and nephew Scott 30 were becoming a reality. We were all training and arrangements were being made for flights, trains, and albergues from Sarria to Santiago. I also had a plan to walk to Finisterre and Muxia with a college classmate and his wife. I was excited to be able to “share” the Camino experience and how much it meant to me with friends and family.

We started our walk from Sarria on 6 September 2023. We flew from Washington, DC to Madrid and took a train from Madrid to Sarria. In spite of my experience on the Camino and all the training I had done, I was having a very difficult time physically. This was embarrassing and unacceptable for me. I am not supposed to be the one who is having a hard time! I found myself sweating profusely and I was having serious pains in my legs (which I later found out to be IT Band syndrome). In spite of the difficulties, I was able to complete the two routes I had planned.

Upon returning home from Spain, I sought medical attention and physical therapy for the IT Band problems. I also read an article in the Mayo Clinic Newsletter about Lymphoma. The article was in a doctor’s office and it looked interesting. In the article, it had a diagram of all the lymph nodes on the human body and the symptoms of Hodgkin’s Lymphoma, a type of blood cancer. I could clearly identify the lymph nodes in my neck (which I had never gone back to have biopsied) as well as a list of symptoms to watch for. Among the symptoms were night sweats and profuse sweating. I was impressed at the plain language of the article as they stated “We are not talking about night sweats where you wake up with a moist brow. We are talking soaking wet and having to change your cloths and your sheets.” This is what I had been experiencing for years from time to time. I dismissed these occasions and assumed that they were diet and perhaps alcohol related since they only happened occasionally. In January of 2023, armed with this new knowledge, I went back to my Primary Care Doctor, he referred me for a biopsy and it came back Classic Hodgkin’s Lymphoma.

Now dealing with the emotional toll of a cancer diagnosis, I was scheduled for a PET Scan to determine the degree or stage of the cancer. This process was complicated by scheduling issues among the hospitals in the Charleston area as well as machines breaking down. Finally, on 10 January 2023, I had a good scan and an appointment with a highly recommended Hematologist/Oncologist. I met with the Doctor and his team on 19 January. The Doctor examined me and told me that he was referring me to the best Hodgkin’s Lymphoma Doctor in the area at the Hollings Cancer Center of the Medical University of South Carolina. After all the angst and waiting, suddenly I was on a fast track to treatments. Within three days I had an echocardiogram at my Cardiologists, a Lung function Test with a specialist, and a port placed in my chest just below my right collar bone (in order to facilitate the chemotherapy infusions). These procedures were required for the treatments as the chemotherapy drugs are notoriously hard on lungs and the heart so they were needed to establish a baseline before treatments.

On 7 February, I met with the team at the Hollings Cancer Center and was counselled about the fact that I was stage 3 . (See the scan above. Note the dark lymph nodes on my neck) I was also informed that this should not concern me since Hodgkin’s Lymphoma was curable especially with this particular protocol of a combination of drugs. On 17 February, I had my first infusion. The treatments started ay 7:00 AM where they accessed the port to take samples for blood work that was amazingly comprehensive. This was followed by a meeting with the doctor and his team at 8:00, and on to the infusion nurse. They started me with three drugs that were referred to as Pre-Chemo drugs. These are designed to assist me in handling the side effects of the chemotherapy drugs. They generally consist of an anti-nausea drug, a steroid to boost your energy level, and an anti-viral drug. The first two infusions I had (two infusions 2 or 3 weeks apart are called one cycle) were Brentuximab Vendotin (BV). This is known as a targeting drug that specifically attacks Hodgkin’s Lymphoma. The infusion process was about a three hour ordeal. I had company, a snack, and plenty to read. I was warned to dress appropriately as three hours of pumping fluids into you in an air conditioned room can make you quite cold. There are warm blankets available. I also have learned that you can wheel the pole where the drugs are hanging into the men’s room without much problem. This was important for a man my age. My BV infusions were on 17 February and 9 March. Picture below is of my first infusion wearing a shirt with the hand prints of all four grandchildren, 19, 14, 4, 1nd 1).

I then entered a phase where I would have infusions every two weeks of the standard cancer chemotherapy “cocktail” of three drugs. They are Dacarbazine, Vinblastine, and Doxorubicib (DVD). These were to be every two weeks and they occurred on 29 March, 12 April, 26 April, 10 May, 25 May, 7 June, 21 June, and 6 July. These are the scary drugs that require the infusion nurses to don a sort of hazmat suit and call over another nurse to assist in making sure that all is right. The nurses were always professional and took great care to make sure that I was comfortable and getting all that I needed. The side effects of these drugs were an ordeal and will be for just about anyone. It is over these five months that I had my most difficult time. I had difficulty sleeping, I was constipated, light headed, and lost my hair and my beard of 25 years. The chemotherapy drugs attack cells that rapidly reproduce like cancer but also, those in your stomach and mouth, your skin, and your hair.) Since the chemotherapy reduces your white blood cell count, any spike in temperature over 100 is extremely dangerous and I was instructed to go immediately to the Emergency Room. This happened to me four times like clockwork four days after infusions in April, May and June. On 14 June, I was hospitalized for intravenous fluids and antibiotics. Early on, I also suffered from a rash, an allergic reaction to the chemo or combination of medications. We were able to isolate the offending drugs after a few weeks of trying and the rash cleared up.

On 25 May, I had a mid term PET Scan to determine our progress. It showed NO VISIBLE SIGNS OF CANCER. (See the scan below). This was thrilling news but the doctors reported that they would have to continue the chemotherapy since the cancer could be hiding in bone marrow or organs where it would not be visible. I was disappointed to learn that I would have to continue for several more months (well into 2024). Alas, at my 6 July meeting with the medical team, I was informed that the team had consulted with the doctor/author of the protocol and since I was doing so well (my bloodwork has been excellent), that they were going to eliminate two months of my chemotherapy (four infusions of the DVD). I would then have four final infusions of BV starting on 20 July. The knowledge of being cancer free and having an end date to my treatments does wonders for your attitude. I am thrilled.

I know that my recovery will take months after the last infusion. I have lost strength and stamina as well as body hair. I will also be immunocompromised for several months. Living like a shut-in hermit for seven months has not exposed me to even the common cold. I thank God for this recovery. I could not have done it without the tremendous support of family, friends, neighbors, and classmates around the country that continued to check on me and give me encouragement. I know how to get back in shape. It is on me now.

Thanks for listening. I hope this helps someone who may have to go through this or some similar ordeal. You can do it.