Friday marked the last day of my seven week chemoradiation therapy journey. Aside from some routine follow-up appointments and recovering from lingering toxicities, I will now wait several months for the repeat PET scan that will provide some insight as to whether or not the treatment was a success. Of course, I’m trying to stay optimistic that the combination of radiation and chemotherapy treatments that I endured over the past seven weeks successfully eliminated all of the cancer – but there is always that nagging thought that it did not and that leaves a pit in my stomach.
Fortunately, on Friday I was able to take home with me the dreaded radiation mask (see enclosed image). No longer will I need to wear this mask for daily radiation therapy, which makes me VERY happy. The nuclear technicians offered humorous insight as to what other patients do with their masks after radiation treatment is done. Some make decorative items, such as flower pots. Others simply burn them in a sadistic revenge ceremony, which I must admit holds a certain type of appeal. Although it somehow conjures up thoughts of Darth Vader’s helmet, last seen burning in a funeral pyre in ‘The Return of the Jedi,’ winding up in the hands of Kylo Ren in the ‘Star Wars: The Force Awakens’ movie…
Regardless of what I do with my mask, I am enjoying a certain freedom knowing that I’m no longer beholden to a daily treatment schedule and that I have received the very best treatment possible for my disease by the entire team at Memorial Sloan-Kettering Cancer Center (MSKCC). It is amazing how quickly the seven week treatment cycle passed and it all seems like a blur right now. While I did not look forward to the daily radiation treatment, the appointments were at least a reminder that I was doing something to treat the disease. Now I have that same empty feeling that plagued me when I was first diagnosed and searching for the best treatment – the feeling that I should be doing something but cannot.
One of my wife’s favorite artists is Georges Seurat, a French post-Impressionist painter known for his role in devising the painting technique called “pointillism.” This technique uses small, distinct dots of color that are applied in patterns to form an image. Looking at such a painting from afar, our eyes and brains blend all of the dots of color into a fuller range of tones that then form an image.
Yesterday’s meeting with the radiation oncology team at Memorial Sloan-Kettering reminded me of pointillism. Prior to the visit, I saw the complete picture from afar – it would be 6-7 weeks of treatment and the associated side effects, but there was the prospect of being cured by the end. After the meeting, however, I started seeing the hundreds or thousands of individual dots of color that represented my treatment.
For example, during the day they created the “mask” that will be used to keep my head and shoulders in the exact same place for my daily (Mon-Fri) radiation treatment. The mask is secured where you lay and prevents any movement of the head and shoulders (see example image). Unlike the older masks, there is a cutout for your eyes, nose, and mouth but coverage of the jaw largely prevents you from speaking. Frankly, it is terrifying! They did three imaging procedures in the afternoon (MRI, CT, and PET) and each one involved the mask being worn for about 30-minutes. Each time I was rolled into the imaging tube, I couldn’t help but think – what happens if I start coughing or choking? With my jaw immobilized I wouldn’t be able to do much. Trying to get past that fear, I quickly realized – wearing the mask would become a daily routine for the next 6-7 weeks.
The side effects of radiation therapy were another one of the individual dots of color that came into focus as I looked more closely at my treatment “image.” I’ve lost count of how many physicians and nurses have told me to “bulk up” now before starting therapy. Gain 10 pounds or more they say. This is due to the fact that in a few weeks it will be difficult to chew, swallow, etc. as a result of oral mucositis and dry mouth from the radiation therapy. As a result, weight loss and fatigue are to be expected.
During the day, I enrolled in two clinical trials – one for imaging and another for blood tests. The imaging study looks at levels of oxygen deficiency (hypoxia) in the tumor tissue. Hypoxic tumor cells are resistant to radiation and to many anticancer drugs and therefore tumor hypoxia influences the outcome of treatment with radiotherapy, chemotherapy and even surgery. The hope is that ruling out hypoxia in the area of the tumor could reduce the amount of radiation therapy needed to cure the disease – and thus reduce side effects. The blood test can be viewed as a type of “liquid biopsy” that detects circulating tumor cells and fragments of tumor DNA that are shed into the blood from the primary tumor and from metastatic sites. Changes in these markers may be able to predict the likelihood of disease recurrence after therapy.
It was a very long day with my first appointment starting at 9am and not finishing until around 6pm, but aside from the aforementioned and putting aside more poking and prodding (including my fourth endoscope procedure – see tiny camera getting stuck up my nose in the embedded image…), by the end of the day I felt somewhat better knowing the timeframe for starting radiation treatment, which looks like it will be Monday, January 18. In addition, I felt much better after meeting my radiation oncologist Dr. Nancy Lee (you can watch a video interview with her under the “Videos” menu tab at the top of my blog). She is fantastic! I have a follow-up appointment with my medical oncologist this Thursday, where I will learn more about the timing for starting chemotherapy.
Since I couldn’t eat all day due to potential interference with the imaging tests, the best part of the day was grabbing a quick dinner in NYC with my wife before taking the train back to Pennsylvania. It is so great having her by my side during this ordeal!