Besides, “How are you feeling?” one of the most common questions I have been asked through my cancer journey is, “So, how did you know you had cancer?” or some variation of this question. At one point, early in my treatment I thought people were just curious and that they wanted to soak up details about my misfortune the way everyone slows down at a car wreck to see if there is any visible carnage or limbs lying on the pavement. But over time, I have realized that what people are really asking with this question is, “How would I know if I have cancer?” Like most of you, I was a healthy person. I was 31 years old, normal build, height and weight. I never smoked, I never did drugs, I liked to have a few beers at a cookout and a glass of wine with friends, but otherwise did not drink. When I filled out my health insurance application, it was just a looong series of no’s. No, I never had that disease, no I don’t have high blood pressure, no history of this that and the other thing in my family. I was active and exercised.
Fortunately, most of us are not accustomed to being faced with our own mortality and if I could go from that picture of health to Stage 3 cancer without knowing it, it is not unreasonable to think that many of my friends, neighbors, colleagues and acquaintances, upon seeing for themselves the misery my disease brought to me, would start questioning just how healthy they were and wondering how they would know if their own bodies were harboring a disease that might be out to kill them.
So, for those of you who never heard, don’t remember, or are just finding this site for the first time and want to learn about how I got started with Hodgkins Lyphoma, here is a chronological timeline of everything I can remember that might have been involved in my diagnosis.
June 2007 – I am on vacation with my wife and 10 month old son in the Caribbean. We had dinner at a beachfront bar where the dining room consists of half a dozen picnic tables half sunken in the sand. It was past sunset when we ordered our food and as dusk settled in, hordes of little bugs started coming out from the sand. We packed our food up and walked back to our hotel room not wanting our little Dominic to get bit up by the bugs. Later that night, my ankles were itchy and dry and I thought it was from the bugs on the beach. Maybe it was, maybe it wasn’t.
August 2007 – While attending a convention in Chicago, I develop a wheezing feeling in my chest and it becomes very painful to take a breath. I go to a primary care doctor as soon as I get home and am diagnosed with Pleuresy, an inflammation of the fluid surrounding the lungs. I am given a prescription and feel like normal within two days.
December 2007 – The itching on my ankles has recurred a number of times since that trip to the Caribbean, so I go to a dermatologist who gives me some creams and some kind of pill prescription. My ankles get better within a few days, but shortly afterward, a similar rash breaks out up and down my legs.
March 2008 – The rash has gotten worse, so I go to a primary doctor who prescribes a steroid. It helps and the rash gets under control, temporarily.
April 2008 – Traveling again, this time in Washington, D.C. After a day at the convention center, I am out for an evening walk with Angela and Dominic along the Mall. We stop in at the Air and Space Museum to use the restroom and while walking back across the Mall I start coughing. It feels like there is a dry ticklish something, like a piece of a feather, stuck at the back of my throat and no amount of coughing, hacking or spitting can get it out. I finally get control of myself by concentrating on long slow breaths. It was a very strange coughing experience because it came on so suddenly, was so intense, happened in a memorable place and because it happened again the next day.
May 2008 – The cough is still troubling me on a fairly frequent basis, so I go to the Walgreens Minute Clinic and get a prescription for some kind of antibiotic. The cough seems to improve a little.
June/July/August 2008 – I occasionally experience heavy sweating during the night. I wake up to go to the bathroom and realize my bed sheets are damp to the touch and the back of my shirt (I always sleep on my back) is soaked right through. I blame this on the pillow top mattress we bought two years prior which has formed two hollows where each of us lay. I blame the sweating on the fact that I sleep in a little fluffy hollow in a thick mattress, with a down comforter on top. I never knew that night sweats are a symptom of something being wrong. I had never heard of that, so call it naivete or ignorance.
August 2008 – We now live in Atlanta and the cough has become a daily companion. Every morning, I get up and spend several minutes coughing and producing a small amount of phlegm. By the time I am done with breakfast, it has passed and I spend the rest of my day feeling fine. The rash is mostly under control except for a bit that is present in my groin, and it causes a fair amount of uncomfortable itching every day.
September 2008 – I don’t have a doctor in Atlanta yet, so I go to an urgent care clinic in Alpharetta and explain the cough and the itching. The doctor hypothesizes that it could be an infection, an allergy or adult onset asthma. He explains that an infection is the most likely cause and sends me home with a prescription.
November 2008 – I am sweating every night to the extent that I am dreading night time. It is interfering with my sleep and making my side of the bed smell bad. I still don’t think it is anything more than a bad mattress purchase though. I also notice that many of my pants are fitting looser and when I weigh myself I realize I have lost about 25 pounds since the spring of the year. In that time, Dominic also went from just being able to walk, to running and spending time at playgrounds. So, I credit the weightloss to being more active and to the extra work required to walk up and down the hills of our new neighborhood in Atlanta which is in sharp contrast to the absolute flatness of Florida. We also take a vacation to Mexico in November and my cough is very noticeable to my friend Joe, who has joined us there and my parents who are along for the trip. The cough now comes and goes at all times of the day.
In late November, I think after Thanksgiving, we are doing a lot of work on the house one weekend and on Sunday night, I sit down with a portable chair massager we own. I am feeling very tense and sore from all the heavy work of the weekend and sit through two full cycles of the massage. When I wake up in the morning, I feel a lump under my right arm. It is small and not painful in any way, it is just there and I can feel it pressing against my arm when my arm is straight down and pressed against my right side. The next day it is gone. So, I assume it was an inflamed lymph node, caused by the massage the night before and the subsequent release of acids and toxins.
December 2008 – We travel to Michigan for Christmas and several people comment on how much weight I have lost. My Grandma is the most surprised by it and asks if I am sick. I laugh that off and assure her I am not sick. I explain that a combination of more physical activity, hills and some work related stress have caused me to lose weight. I also joke that I had gotten a little heavy and had some extra weight to lose. During the week of Christmas, the lump under my arm returns and this time it does not go away. I am finally giving in to the fact that something may be wrong. After months of dealing with rashes, coughing, night sweats and weight loss, I tell Angela that my New Years Resolution is to get completely healthy. I spend a lot of time researching doctors to find one that I feel would be a very good primary care physician and make an appointment for January 5, the first day of the new year that his office is open.
January 5, 2009 – I wait nearly 45 minutes in the waiting room, then another 30-40 minutes in the exam room before getting so annoyed that I walk out. As I am walking past the front desk, one of the nurses asks me where I am going and I explain that I am fed up with the wait time and will not give my business to a doctor that has no respect for his patients time. She encourages me to stay a little longer and promises to get someone in to see me right away. I had typed up a list of all the problems, big or small, that I had been experiencing so that I don’t forget to ask about anything, and I decide to go back and wait just a little longer. I finally see the doctor and give him the list. He immediately takes on a concerned tone and tells me he would like to test for a number of theories. The theories he explains to me are a very bad infection, tuberculosis, and ruling out that it could be something worse. Months later, when I get my own copy of his patient records I see that he has written on his initial exam form from that day, in fairly big letters, “Possible Lymphoma.”
I get an x-ray, pulmonary function test, EKG, and they begin a TB test.
January 7, 2009 – I go back two days later and learn that the skin test has ruled out tuberculosis, but he is still very concerned about a bad infection. At one point during that appointment, Dr. Gupta grabs me by the shoulders and tells me, “I am very glad you decided to stay on Monday, and no matter what the problem is, we will fix it. And I will be here for you the whole time.” I thought that was a little strange and overly personal for a doctor. That day he ordered more x-rays and based on those, he asked me to get a CT scan.
January 9, 2009 – Early in the morning, I go to Emory Johns Creek Hospital to get the CT scan. It is uneventful, as radiology appointments typically are, and I go home. We are having a houseful of people that night for a neighborhood party and there is a lot to do. Two hours later, a nurse calls from Dr. Gupta’s office and says he would like me to come in as soon as possible so he can discuss the CT results with me. I am annoyed by this, but still mindful that if a doctor wants to talk “right away,” then I should probably go.
I am sitting in the same exam room that I had started the week in and Dr. Gupta walks in. He wastes no time, sitting down in a chair across from me and says, “I have bad news. You have Lymphoma.” I tense up because even though at that moment I had no idea what Lymphoma was, I was afraid because the doctor said it was bad news. We have a short conversation in which I learn that Lymphoma is a cancer and that I will certainly need chemotherapy. Other than this basic information, Dr. Gupta will not discuss any other details and walks me out to his front desk where he makes a phone call and sets an appointment for me to see a Hematologist/Oncologist in 5 days.
And that is how I found out I have cancer.