How research, an empathetic support system, and progressive treatment are paramount in overcoming this disease
By Gary Jobson
The phone rings. I check and notice that it is a familiar number. “Hello,” I answer with my usual enthusiasm. The voice on the other end sounds dower, and with good reason. The first words I hear are, “My husband has cancer. I don’t know what to do? Please help.” I wish I wasn’t an experienced hand in such heart-wrenching matters, but I am. Several years ago, I received my own diagnosis of lymphoma. I clearly remember when the doctor leaned into the table and gave me the news. I tried to be light hearted at that moment, and responded, “Doc, I don’t know which is tougher, me hearing this news, or you having to tell me?” I detected a faint smile, but soon I could feel a tear rolling down my cheek. I knew deep down, that I was in serious trouble, just like my friend’s husband. With the help of time, I have reflected often about dealing with cancer. There are no easy answers, but I hope my experience has been helpful to the hundreds of patients who have called me for advice.
For me it was a long and, at times, lonely battle that stretched over two years. In the process, I endured endless rounds of chemotherapy, and eventually a stem cell transplant. I made a slow recovery. Today I am cancer free. I don’t like to say I am cured, or in remission. My description is simple; the cancer is ‘gone.’ The fact that I was even diagnosed with cancer was an ironic twist of fate for me. In 1993, I was a volunteer on a committee to help raise funds for leukemia research at a sailing event. More than 100 boats raced in the regatta and by the end of that weekend we had raised $30,000. A few months later, I was invited to a meeting of the Leukemia and Lymphoma Society in Washington, D.C. I put my hand up with a suggestion. (This is always a dangerous move in a volunteer organization). My idea was creating leukemia cup regattas all around the USA. After some discussion, I was asked if I would serve as the “honorary chair.” I signed on for three years. (With a smile I should note that my tenure has continued for the past 25 years). Each year, we host about 45 leukemia cups around the United States. As of this writing, these events have raised over $63 million.
When I signed on as chair, I did not expect that I would be the beneficiary of all that research we funded. A researcher might spend about $100,000 per year on a trial or experiment. Our annual net is over $4 million now. So, we fund about 40 researches annually. There is a nice lesson here. When you help someone else out, like we were doing with the nameless and faceless patients receiving cancer treatments, the person that might be helped the most just might be you. I am grateful to this day.
While most of my career has centered around racing sailboats, and working in the media, I have spent considerable time in the healthcare field. I am currently the chair of the board of trustees of Anne Arundel Medical Center. This is an active position that demands daily attention. I also serve on the board of the Hope Funds for Cancer Research, and I was on the board of Blue Cross Blue Shield of Virginia for 15 years. In appreciation of the doctor who saved me, I was able to raise funds to establish the Jobson Chair of Medical Oncology at the University of Maryland Medical Center for Dr. Aaron Rapoport. All of this background has been a big help to me when I speak to cancer patients.
There are many treatments available today, and the success rate of battling cancer has greatly improved over the past 40 years. In the 1960s, more than 90 percent of children with leukemia passed away. Today, that percentage has been nearly reversed. I am happy to report that it has been 14 years since my stem cell transplant. When my phone rings, I don’t start giving suggestions at that moment. I arrange a time when both the husband and wife can be on the phone at the same time. So, I arrange a convenient time, and ask that we spend about 45 minutes talking. My first advice is not to panic. I state that there are many treatment options available, and the success rate is very encouraging. This is the time to get educated and ask questions. There are never any bad questions. The medical staff is well aware of the trauma families go through and are very helpful. The Leukemia & Lymphoma Society website is resourceful with lots of information. By reading up on the topic, one has a better idea of what questions to ask.
Always get a second opinion. This will not offend your primary doctor. The second opinion will likely confirm that you are on the correct path. And if not, all parties will want to know if something else has been found. During my battle, I arranged to have three opinions. All three medical groups came to the same conclusion on the diagnosis and subsequent treatments. It gave me comfort.
Be prepared for an emotional roller coaster ride. There will be good days and bad days. The key is to not get down when things aren’t going well. At the same token, don’t get too excited on the good days. Just try to be as even keel as possible. Some treatments are painful. I learned to take pain medicine and not be a hero. You make better decisions when you are not in severe pain. It is important to understand that you get to make all final decisions. Just like a sailboat race, where I welcome lots of input, in the end the big decision is yours.
It is easy to get depressed during chemo treatments. I spoke with a mental health expert on a weekly basis during my two-year battle. When I got better, the need for a psychologist went away. But, I found it helpful to speak with someone openly, who had no personal connection with me.
Everyone around you will want to help. This is human nature. Most of the time people are not sure how to act with a cancer patient. The best thing the patient, and spouse, can do is to act normal in the presence of others. It eases the tension. A good attitude is essential. Thank everyone frequently who is lending assistance. It’s funny how the nurses seem to come around a little more often when one is thankful.
Be sure to get a lot of rest. Before my diagnosis, I was not used to napping frequently. Resting helps the body fight the cancer. It might feel like you are being lazy, but the rest really helps. I listened to a lot of classical music during those years, (and some Beatles, too). As difficult as it might be to accept, fighting cancer is a full-time job. A positive attitude makes a big difference.
Throughout my treatments, I received a li ary of books from friends. I read a few of them, but had a better result writing in my own journal about the experience. I found this to be really helpful therapy. During that two-year period, I wrote a book about yacht-racing technique. I also hired a writer to conduct weekly interviews with me. Six years later, I used the interviews as the basis for my memoirs, An American Sailing Story. I used my story of overcoming cancer as the backdrop to my life on the water. During my chemo treatments, I was also offered all kinds of alternative medicines, including a bag of marijuana. Yikes, what do I do with this? When the person left the hospital, I flushed it down the toilet in small doses. Stay away from all “alternative” anything, and fully discuss with your doctor.
The treatment process is often harder than you might anticipate. Recovery from the treatments is also hard. Expect weird things to happen. One nurse told me my hair would fall out on the 18th day after my first round of treatments. On the 18th day, I woke up with all my hair. But, when I took a shower, it all fell out. One will experience perpetual nausea, frequent anger, depression, and extreme fatigue. This is normal. Spend time discarding bad thoughts. One of my recurrent thoughts was, “Why me?” I rationalized that unhelpful notion by saying that getting cancer was a statistic and by my getting it, others would not have to. Small things can make you feel better. Try to stay clean, and hydrated. Keep moving every day. Time passes slowly, especially at night. Have a ritual every day, like reading, or going for a short walk. I became a fan of watching Turner Classic Movies. It gave me something to look forward to each night. Your taste buds will usually change. Something that you usually enjoy will suddenly taste foul. For me, strawberry ice cream still tasted good. Since I lost considerable weight, eating lots of ice cream was a good thing.
My phone calls with patients are very rewarding. I sense the listeners feel better after hearing about my experience. Many of the people I speak with don’t follow-up for a long time and then, out of the blue, a few years later, a letter will arrive. The author will thank me for my words and advice early in their ordeal. It gives me great satisfaction. Cancer is horrible. Maybe someday we will find a way to wipe it out. Fortunately, at this time, a cancer diagnosis doesn’t equal a death sentence. Being a good neighbor during a time of need is one of the greatest satisfactions you can have in life.
