In December of 2008, I discovered a 'hard lump' underneath my collar bone. Because it felt odd, I tried to research it on the Internet. It 'appeared' to have the characteristics of some type of lymphoma and that scared me, but I wasn't feeling ill, so I waited a little. When you use the Internet for medical information, you have to separate fact from innuendo.
Eventually, in March of 2009 I went to my general practitioner for allergies. Maybe there was some part of me that wanted the doctor to look at me, but I didn’t show him the lump. On a second visit the Nurse Practitioner, diligent in a way that I didn't realize at the time, suggested a chest x-ray – just to take a look. I had a chest x-ray and it showed a 'shadow' in my chest. They said that it didn't look proper, it was occluding my Superior Vena Cava artery – not good- and that it's something that should be checked out right away. That same day I had a computed tomography (CT) scan, and the doctor saw the four cm tumor clearly. Of course at this point I was totally scared to death. I called my general practitioner back, and I told him that I was really worried. A couple of days later, I visited him and showed him where the lump was. It wasn't visible, but he felt it. It was hard and immovable. He asked me why I didn't tell him about it before. I explained that I thought that if it was something serious he would have just known. He told me that I had to work with him, that examinations are more useful when the patient communicates. He concluded that I should see an oncologist right away.
I didn't have typical symptoms like extreme night sweats or fever, but the oncologist didn't like the look of the scan or the feel of the lymph node and sent me for a biopsy, where the lymph node in my neck was removed. It wasn't a bad surgery, if anything it was more scary than painful because you have to wait a few days for the analysis. The doctor called and said, "It's Hodgkin lymphoma (HL)".
Although I didn't believe it, the doctor told me I was 'lucky.' I asked, "You just told me that I have cancer and this is a good thing?" And he said, "It's better than most other cancers because about 95 percent of people are cured."
40-50 years ago this kind of diagnosis was a death sentence.
A few weeks later, I had a positron emission tomography (PET) scan, many blood tests, and a bone marrow test - which was very unpleasant. I didn't have cancer in my bone marrow, which was a good thing. As a result, within a few weeks I started a chemotherapy regimen - for six months, I received treatment every other Thursday for the entire day. The chemotherapy was ABVD (adriamycin, bleomycin, vinblastine, dacarbazine)–the 'gold' standard for this kind of HL. It was unpleasant, but they give you tremendous medicines for the nausea. I was on an airplane every week for my job, so I was fortunate to never get sick or miss a week of work. I went out every weekend. My life didn't change - except that I lost a lot of hair, and I looked pale and pasty.
Because my doctor was conducting a study about the prognostic effect of PET scans after a month of chemotherapy, I had a series of these scans. After the first month of chemotherapy, the PET scan was negative. This meant that I was responding well to the chemotherapy. I went for another month of chemotherapy and had another PET scan; it was negative. I didn’t have another PET scan until after the six-month treatment was over. Since the six months of treatment, I have had five additional PET scans, all with negative results, the most recent being only this past March. I'm getting closer to that five year 'in remission date' – that lets the Doctor say those amazing words – 'you're cured.'
During a PET scan, both a glucose solution and a radioactive substance are injected into your body. The solutions flow through your system and after about an hour, you lay in what looks like a hollow tube. Since the glucose (sugar essentially) becomes radioactive and sticks to cancer cells, the solution will light up under the scan if cancer is present. They used to have to do exploratory surgery to determine which organs were affected, but now they just do the PET scan. It's not uncomfortable, but you can't go near people for about an hour because of the radioactivity. It's nerve-racking because you want to see the results. It's certainly been quite a journey.
There are books and websites that describe what ABVD will do to you, and for the most part it didn't do much of anything. They say that the vinblastine can give you some numbness in your fingertips. It did, but it wasn't a big deal because it went away quickly. Bleomycin on the other hand, is a very powerful drug, and it can be damaging to your lungs. I frequently had Pulmonary Function Tests (PFT) where you go into a cage and blow into a tube to determine how your lungs are functioning. About half way through the treatment, my PFT rates were decreasing, and the doctor stopped giving it to me because it can cause lung fibrosis, and he thought that I'd be fine without it. Dacarbazine also is really a powerful drug. If you took it and didn't have anti-emetics - you would most likely get very sick. Also when you take adriamycin you receive an intense heart work-up prior to the start of treatment, because you can only have a certain amount of it in your life, and this course of treatment is about the maximum.
Being communicative about something like this is really important. Cancer is a scary thing for other people in your life, too. People may look at you differently, as if you have some kind of contagious illness. I was very open with the people that I'm close to. At first, I didn't share it with my employees, but they understood after a month or two when my hair started thinning. In the end, I told everyone exactly what I had been through.
There is nothing to be ashamed of. We usually don't do anything to get cancer, we're just unlucky. If you survive cancer, the visibility of your own mortality is extremely transformative and is a gift. You lead your life much differently than you did before. I wouldn't want to do it again. I certainly would have wanted a pass from this experience, but having no choice but to go through it, I feel like it made such a difference in the way that I conduct myself and the way I live my life.
Knowing what I know now, the advice I would give a newly diagnosed patient is to ask your medical team questions. Ask, "What do you recommend to fix this? What is the cure rate? How are my odds? What are my treatment options, and how will it impact my life? Am I going to be able to exist the way I'm existing. For example, in my case, can I go to work? How will I feel during treatment?" The doctor will usually tell you that everyone reacts differently. I think I'd like to hear from my doctor that it's going to be a little uncomfortable, and you aren't going to feel perfect, but you will get through it. It's not as bad as you think. On a scale of one-ten, it's about a four. I'd also ask about what will happen after treatment is done—which is that they watch you, do more scans, and in a few years hopefully there will be no reason to continue to be monitored.
My doctor was honored by the Lymphoma Research Foundation (LRF) in 2010, so I wanted to be supportive. I am sharing my story on LRF's Stories of Hope website and was asked to be an Ambassador to talk to media, the medical community, and to help to explain the disease to other patients. The LRF is a very devoted group of people, with a very specific focus on lymphoma, and they do a super job. They have programs like Ask the Doctor where a panel of doctors and patients sit and talk about lymphoma and answer questions. They also have an Advocacy Program with the government.
It always feels good when you can participate and give back. After going through this journey, you just have to do something. There's just nothing better than beating cancer. And through more contributions and more research, more and more people will be able to say they are survivors. Without a doubt, years of research – long before I was diagnosed – saved my life. A disease that was almost a certain death sentence is now treatable. A testament to the ingenuity of great doctors and the power of research.