My experience with cancer

My experience with cancer

In April of 1999, at age 27, I was diagnosed with low-grade follicular Non-Hodgkin’s Lymphoma after discovering a small, painless lump in my right groin area. Before getting the results of the biopsy I was hoping it was just a hernia from lifting heavy baggage into an overhead bin for passengers on an aircraft. At the time, I was a flight attendant. In the back of my mind I knew cancer was a possibility, but I was still shocked to learn that I had lymphoma. I didn’t know much about lymphoma, but I had a feeling it was going to be a lot worse than some other forms of cancer and I was scared to death.

I quickly lost confidence in my first oncologist. After having further tests to show the stage the cancer was in, he determined I would have chemotherapy AND radiation. After a bone marrow test (which was not half as painful or scary as I thought it would be) he decided to give me radiation only (20 times at Princess Margaret Hospital Toronto), and after that we would “watch and wait,” reacting upon the cancer’s return.

This was unacceptable! I had NEVER heard of watching and waiting for cancer to return, all of the people I’ve known with cancer underwent aggressive treatment as soon as possible, the theory being the earlier you “zap” it the better your chances of survival. My doctor explained that my cancer was non-aggressive or indolent. It’s not aggressive, that has to be a plus, right? This means it grows slowly. It is possible to treat the cancer with chemo so that CT scans show zero signs of the cancer, but it tends to “hide” in little pockets around the body and grow back again. Boy, that sounded like a death sentence I tell you! Besides, did my doctor even know what he was talking about? He first said I would be treated with chemo AND radiation and now he’s changing his mind all of a sudden, was he even competent in this matter? I switched oncologists, for a second opinion.

By the way, a second opinion is a very smart thing to do when you’re dealing with a life threatening disease. Don’t ever feel bad about getting another doctor’s opinion–it’s your life you’re talking about! Cesides, oncologists are used to people getting second opinions for reassurance!

I really trust my new oncologist–he was of the same opinion about my case as my previous doctor, but that was ok, I could now accept the diagnoses. This doctor gives me the facts but avoids the scary statistics, unless I ask him. He lays out the possibilities in a clear, down-to-earth manner and uses examples of other patient’s experiences to put me at ease (without revealing their names of course). I have been asked to think of my lymphoma as a chronic disease. It’s been difficult to get my head around this!

After taking a couple of months off work for radiation and mental health relief, my husband Paul and I had our dream wedding, thanks to my mom’s careful planning! I decided to quit my job as a flight attendant, this was one of the positives which came from my having cancer as I went on to work as a customer service rep in a call center, a dream I always had but did not have the nerve to pursue. This is significant because prior to my new fate I did not know if I would be good enough to work in an administrative role since I had not touched a computer in years, and my computer knowledge was minimal. I had not completed university, and my work experience was with the airlines. My confidence and self-esteem were not the greatest at the time, and I was really pushing myself to get up the nerve to make this change.

Another positive to come out of this was taking better care of myself: getting more sleep, eating more and better, and knowing my limits. Knowing my limits means I monitor the day-to-day stress in my life, and I know when it’s time to recharge my battery. I am not perfect, I still pig out on junk food from time to time but I am much better than I used to be!

Important realization along the way: Doctors consult with other doctors, and this is a good thing. Even when they talk like they know a lot, and they do know lots, one doctor cannot possibly know EVERYTHING about all types of cancer. Technology in the medical world changes at a rapid rate and doctors are constantly learning.

About a year later I started to develop a lump on the left hand side of my groin. Similar to my first lump, it was painless and small. I was not too shocked and I continued follow up appointments with my doc every six months. He assured me that unless it was causing me any pain or cosmetic grief, we would be ok just watching and waiting. I continued to work full time. I decided I was not going to tell anyone I worked with about my cancer unless I absolutely had to. That way there was no risk of people treating me any different, and I could pretend all was well.

After two years you’d think I had come to terms with my situation, and I had for the most part. I had excelled in my customer service job to a Team Leader position, was happily married with the love and support of amazing family and friends. But surprisingly the fears and doubts returned as my husband, Paul and I were contemplating purchasing our second home, an upgrade from the first. What if the cancer comes back and my salary is reduced due to long term illness? This house would be located 20 minutes further away from Toronto, did we want to face longer treks to the hospital for repeated treatments in the future? The normal stress of buying and selling a home was bad enough! My mom settled my mind by telling me that no one knows how long he or she are going to be alive on this earth, and you just cannot think like that or you could miss out on so many wonderful moments.

Any time a life altering decision such as buying a house comes up I will undoubtedly have a little return to my fears. Whether or not to have a child is another example. Fortunately, Paul and I are “on the same page” with that decision and are ok to put that dream on hold, permanently if need be. It’s hard, you know, the “what ifs” always linger near. Paul and I decided to buy the home and we are so happy it’s beyond belief!

Well five years later I have been promoted to manager of 15 people in that same customer service department. Needless to say, I have a bit of a “carpe diem” theory going on, and I don’t let inhibitions stop me much these days. Usually, if something comes up that I would like to do but am afraid, a little voice in my head says, “what have you got to lose” and the next thing I know I am doing it! This is yet another positive that has come from having cancer. I feel good, too. Luckily, the only systemic symptom I sometimes have is night sweats.

The painless lump in my groin continued to grow, as did two others behind my ear: one on the side of my neck, one under my arm and a small on under my chin. All were small enough that they were not noticeable by those around me. The one in my groin had grown to five inches by seven inches (on the outside, I could measure it with a fabric measuring tape). It was becoming more difficult to hide this with my clothing and I talked to my doc about my concern. The doc said it was time to have chemotherapy. My mother flew from Newfoundland to join me for six rounds of chemotherapy (a mild version in which I did not lose my hair). My sister would attend meetings with the doctor, taking notes for me on everything he said (doctors tend to talk real fast). He set up an appointment for me to talk to a doctor who specializes in allogenic stem cell transplants.

After carrying around the knowledge that I had cancer for five years (since it’s an indolent or “slow growing” lymphoma), I finally had to tell the folks at work about my situation. This was by far the hardest thing I’ve had to do. Not only was I shocking people with the news, but I was admitting to being ill in the only place that still seemed “normal” and unscathed by the cancer news. My co-workers and boss were very supportive, and we have decided to hire a “team leader” to help me manage the department until I go for the transplant. It’s amazing how good people are, you know? And it’s amazing what good things can come out of something as crappy as cancer: newfound confidence to be the best I can at what I do, enjoying every moment, and changing all aspects of life that do not make me completely happy. It has a profound affect on other’s lives too, it helps them put things into perspective and to love and respect each other a little more.

I found out the most amazing news, my father is a five out of six HLA match for a peripheral allogenic stem cell transplant. My disease is “chemotherapy sensitive” which means it is responding to the chemo. I had one more round just to decrease the disease a little more before going for a transplant. I have been scheduled to have high does of chemotherapy followed by the transplant on November 11, 2004 at Princess Margaret Hospital Toronto. I am looking forward to getting this done and getting well again, but I am a little overwhelmed and fearing the unknown right now. I will keep you posted how things go later on!

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