25 years ago, at about this time of year, while anxious over finishing my Ph.D, I found out that I had cancer, and I made an appointment to see the cancer specialists at Dana Farber Cancer Institute. We now return to the narrative of my cancer journey.
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Before we get back to the story, I must insert a point outside the main flow of the story. Receiving a cancer diagnoses can be disorienting. It is difficult to face and hard to share with friends, and family. When I first told my labmates, they thought I was joking. What 27 year old gets cancer? Of course once they understood, I got great support. It was about this time that I did the stupidest thing I have ever done in my life. I did not tell my family right away. I don't understand my actions. My rationalization was that I needed to find out my prognosis so I could know where I stood. I also did not want them to worry, and wanted to give them the best information that I could. It seems silly in retrospect. I called my parents about halfway through my treatment, and told them my diagnosis. Needless to say, it was my hardest phone call, ever, by far. In retrospect, I think telling my family that I had a disease that could kill me made it real and clearly made evident the gravity of the situation. If you ever get cancer, make the first call to the ones who love you the most. Establishing a support system early can be very important.
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I finally got to meet with the doctors at Dana Farber Cancer center. Dana Farber is a comprehensive cancer center meaning the main focus is treating all kinds of cancers as well as research. Founded in 1947 to treat childhood cancers by Sidney Farber, the hospital expanded to all ages in 1974. It was generously supported by the Charles A. Dana foundation, and this was recognized in the change to the current name in 1983. It employs more than 4000 people who serve over 300,000 patients a year, as well as conducting numerous clinical trials. It is funded by many government agencies and foundations. Baseball fans may have seen Jimmy Fund billboards at Red Sox games. Money for this charity goes to Dana-Farber. It is a teaching hospital affiliated with Harvard. It is located in the Longwood Medical Area in western Boston near the Back Bay Fens (a fen is marshy lowland) that gives Fenway Park its name. Nearby are the Harvard Med School, Boston Children's Hospital, Brigham and Women's, and several other medical facilities. You can read more at their web site: Dana Farber Cancer Center, Boston
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It was about a 30-40 minute subway ride from my department to the Institute. A nice little spell to think. There was no internet, so I did not know anything about the place, but I had read about my cancer, so I had a general idea about what the staging and treatment would be, but I was really heading into unfamiliar territory. I arrived and filled out some paperwork, and saw the doctors shortly. We went over the pathology. There are about 16 types of Non-Hodgkin's Lymphomas. Some are aggressive, and some are slow growing (medical term = indolent). The initial classification was changed after Dana Farber's lab analyzed my tumor. I luckily had one of the aggressive types. Lucky because aggressive cancers are rapidly dividing which makes them vulnerable to chemotherapy.
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Next I gave a long, thorough, invasive medical history. Every aspect of my health, and habits was questioned. Do you drink? Do you smoke? How often do you exercise? What is your diet? What major illnesses? What major illnesses in close family members? Any one have cancer? Sexual history? Do we need to give you an AIDS test? I am introvert, so I was initially felt this was an invasion of privacy. I came to realize this probing was necessary because the more they knew about me, he better they could treat me.
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Next was a thorough head to toe examination. Poking, proding, listening to every part of my body. Every tiny deviation from normal was questioned and had to be explained. Most previous physicals I had were for football where the doctor would usually take a blood pressure reading and listen to your chest and turn your head a cough and that was it. I went down to the clinical lab where more blood was taken out of me than has ever come out at one time. A urine sample was also taken. After this I returned to talk to the doctors.
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They discussed the techniques that would be used to stage the cancer. A thorough analysis of the blood and urine, and a careful reevaluation of the tumor slides. They told me I could get a second opinion, but each new case is discussed by the entire lymphoma group, so in essence I got 20 second opinions all at once. A bone marrow biopsy taken from my hip bone. This would determine if the cancer stared in the marrow or had spread to there. A CAT scan of my entire torso. This is where the major lymph nodes are located. A radioactive gallium scan of my head , torso, and the junctions of limbs and trunk. Gallium shows where iron is being taking up which is common for tumors.
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Regardless of what the test found they told me the usual treatment for this type of cancer was several rounds of chemotherapy to try to get rid of every single cancer cell. The drugs would be administered through a device called a port-a-cath that would be surgically implanted in my chest. I will describe the test and the port-a-cath in subsequent posts. As I was leaving, I mentioned that the doctors were very calm talking to me and were very matter of fact about everything. He told me that he loved treating patients like me. With lymphomas and leukemias and some other cancers, the treatment protocols were established, and a little chemo and cancer is gone. I knew I was in the right place.
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Stay tuned for more of the story.
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(Cancer Chronicles is a series of status updates that account the events of 25 years ago when I went through a bout with cancer. Its purposes are multi-fold: catharsis, education, information, celebration, etc. )
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This originally was posted to facebook October 8, 2012.
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