Find the Fun in Funeral

Photo: Daniela Edburg, Death by Lifesavers
When at first I found out that something was very wrong with me and that it had something to do with cancer, I cried a whole lot. I cried like I had never cried before, I sobbed incessantly until my belly ached. The word cancer loomed large like a sinister cloud over the life I knew, and over all that I had hoped to accomplish. During those terrifying first days when I crossed over into the world of the sick, I also thought a lot. I mused about my own death and about how my family would deal with the loss.

To be honest, way before I was diagnosed with cancer, when my life was completely normal without any signs of lumps or bumps, I sometimes imagined what would happen if I was diagnosed with cancer. I thought about how I would cope with all of those needles, how I would deal with hair loss, and how people would react. I also envisioned what my own funeral would be like.

I am fairly certain that I am not alone in terms of people who think in the abstract about how their own funerals would go. In fact, it really is a rather egotistical line of thinking. I am not referring to the concrete planning of one's own funeral with the knowledge that death is imminent - rather, I am talking about indulging in the fantasy of an event that is all about you (and beyond this, didn't Freud have a theory about the death drive, a desire to return to an inorganic state?) What would the eulogy be like? Would it be standing room only? Would any old boyfriends confess their undying love?

During those first few days, I really did think a lot about death, but it wasn't all gloom and doom. I lugubriously daydreamed about who would show up at my funeral. I pragmatically selected which friend would receive my Diane Von Furstenberg wrap dresses and who would be honoured with my highly coveted shoes, and whether perhaps the shoes could first be placed on display, perhaps at a small exhibition at the Bata Shoe Museum. I chose who of my friends I wanted my husband to marry, and who would receive my gorgeous dark wood, uber modern furniture. (But then I remembered that my husband was still alive and would still have a need for a dining room set).

Photo: Daniela Edburg, Death by Cake

Some of my thoughts during those early days were downright petrifying - like whether I would see my next birthday, whether I would ever be able to have children, or whether all the toxic drugs would turn me into a different person and make me lose my sense of self. Yet other thoughts, such as those that revolved around my own funeral, may have stemmed more from self-centeredness than anything else. Would the room at the funeral hall be packed? The death of someone who is still young tends to draw quite the crowd. Would I be buried back in Montreal or rather in Toronto, where I lived for the past nine years - and if I was to rest in peace in Montreal, who from Toronto would make the trip to Montreal?

When I began to educate myself about Hodgkin's Disease, I learned that in all likelihood I was not going to die anytime soon. Hodgkin's is not fun, but it is often curable. And for a while during treatment, all indications were that I would make a swift recovery. The PET scan that I had received mid-way through treatment showed no signs of cancer - it was gone. Based on this highly sensitive test, it seemed that I was cured, and I would only need to complete the rest of my chemotherapy to ensure the destruction of any renegade cancer cells still lurking beneath the radar.

Unfortunately, during a routine PET just a few weeks after I had completed chemotherapy, it appeared that the cancer cells were still there, and they were multiplying. That is when the doctors decided to try radiation.

This past Friday was my fourteenth day of radiation out of a total of twenty days, based on the current plan. I am hoping that all of this zapping will do the trick and nuke the last of the cancer cells, but if I am really going to be honest with myself, if I dig deep down, I am not entirely sure how well it is working.

With the risk of getting a little personal, it seems that I can monitor the growth of cancer cells by how much I itch. Several months before my diagnosis, I became increasingly itchy and grew obsessed with finding the cause of the itch and trying to get rid of it. At first I thought the culprit was the soap or detergent that I was using, so I switched to milder brands. When that didn't work, I tried everything from vacuuming my mattress (was the cause - horror of horrors - bed bugs?), eating a gluten-free diet and wearing only natural fibers. Nothing worked, until I was diagnosed with Hodgkin's Disease and things fell into place. A minority of cases list pruritis (itchiness) as one of the possible symptoms of the disease, and it seemed to me that I must have been one of those cases. The doctors however weren't convinced that a connection existed between the disease and my itch.

Chemotherapy seemed to do the trick for a time, and my itching decreased significantly. The doctors at that point were still skeptical but began to wonder if the itching and the Hodgkin's were related. At the time that I had my mid-term PET scan, which indicated that I was cancer free, I was itchy, but it wasn't so bad.

However, within a few weeks of completing treatment, the itch came back with a vengeance. I couldn't sleep, and on some days could barely function. The itch was so intense that it became a form of pain and nothing seemed to help all that much. At that point I was due for a follow-up PET, and to the doctors' surprise, the test came back positive.

And so, it was back to more treatment for me, this time radiation. Within a few days, there was a dramatic decrease to my itch - suddenly I could dispense with the cortizone, antihistamines and ice packs that I had been using to try and control the itch. The doctors gradually became convinced that the itching was connected with the disease. It seemed that a chemical was being released as the cancer cells multiplied, which may have caused my pruritis.

Well, I am more than half way through radiation treatment, and the itch is better, but it isn't gone. This has even left my radiation therapist concerned, because Hodgkin's Lymphoma is typically highly sensitive to radiation and it would have been preferable if my itch had disappeared by this point in the treatment.

It is also possible that the cancer is gone forever and that the itch will never completely go away, but remain a permanent vestige of the tumours that invaded my body. A lingering itch would be fine with me. What I am worried about is that the itch is an indication that the cancer is still there, lurking. If radiation doesn't succeed in eradicating it, I will need a stem-cell transplant. This is a life threatening procedure that I hear makes chemotherapy look like a walk in the park. Basically, you are given enough chemo to kill you and then are "rescued" with your own stem cells. It usually gets rid of the cancer for good, but not always, and it has toxic ramifications. After the "rescue" treatment, you are at a significantly increased risk for secondary cancers and you become completely sterile, not to mention the fact that you need to interrupt your life for a further six to eight months and lose your hair all over again, as well as your eyebrows and eyelashes. None of this thrills me. My disease was caught at a fairly early stage, so it would be quite rare - but not unheard of - if I wound up requiring a stem cell transplant.

It worries me that I am still itchy. Perhaps some of the cancer cells are resistant to treatment. This concern has renewed my thoughts about death. To be completely honest, sometimes I wonder if I might die in the next few years. I don't actually think it will come to this, but it is one of the possible outcomes.

I am not in the mood to die and, while nobody is ready to die, thirty years old is on the young side. I sometimes think about childhood cancers, about boys and girls who do not make it past the age of four, or seven, or twelve or fifteen. I have made it past my youth, I have experienced adulthood. At least I have that. But at the same time, I have so much life that I want to live.

So I am back to thinking some fairly morbid thoughts. Some thoughts are indulgent, while others are unbearable. I know that my death would take an unspeakable toll on my parents - it is not natural to bury your own child, and my parents are so devoted to me. I think about my husband - I look into his eyes and see a limitless capacity to bear grief. I know that he will be able to move on, but I am not quite so sure about my parents. My brother would be tormented as well.

I hope that I will be okay. I want to live, and I want to get over this. In some ways, I feel more alive these days than ever. While jogging outside in the crisp autumn air amidst golden leaves and under a bright blue sky, you can't help but brim with energy. While exploring how your body moves and contemplating your very breath in a hot yoga class, as I did this morning alongside my husband and sister-in-law, you can't help but feel present and happy and whole. After spending time on the mountain in Montreal and then warming your hands with a cup of hot chocolate, as I did yesterday with my wee nephews along with their Mommy and Daddy who came to visit from New York, you can't help but feel that life is good. So these days, I often feel wonderful. But I know that inside my body is fighting a war, and I just hope that it can win.