How did you find out you were sick? What events led to the diagnosis?
I was sick for about a year prior to my diagnosis. Nothing concrete, just vague signs and symptoms including: skin rash that wouldn’t go away, chronic sinusitis, headaches and sinus pain of unknown origin, and I developed an allergy to tomato plants (of which I am not allergic to now). Basically, all immune system dysfunction. I became increasingly tired to the point where I cried because I didn’t want to get up.
I saw many doctors and let them convince me that I was depressed. I started taking naturopathic medicine for depression to no avail. I made a huge life change and decided to go to nursing school and in my second week, I found the lump in my neck. It was another five months before they did the surgical biopsy.
I was sent home with mono (I did test positive for Epstein Barr), did investigations for toxoplasmosis, infections, etc. It was a nurse at Humber College who convinced me to keep pushing. I knew something was wrong–I had that “feeling of impending doom” in the pit of my stomach. I started to lose weight and develop nausea. I kept going back saying, “Hey, this isn’t mono!” If I hadn’t been persistent, I know I would have been diagnosed at a much later stage.
I was diagnosed with Hodgkin’s Lymphoma Stage IIA Nodular Sclerosis. I had tumors in the left side of my neck and at the base of my heart.
Three years after my initial diagnosis, I relapsed. I even had to convince my oncologists that I needed to be scanned again. I found a lump in my neck on the opposite side, in the radiation field, and they basically sent me home and said, “It never happens in the radiation field; this lump is probably nothing.” But, fortunately, the doctor decided to run scans at my next appointment which was four months later. That’s when they found a tumor between my ribs. The lump in my neck showed on the CT scan, but not the gallium scan–however, it sure disappeared with chemo.
What year was it? What was your age at the time?
I was finally diagnosed June 9, 2000 at age 21. I relapsed in april 2003 at age 23.
At what level of education were you at diagnosis?
At my original diagnosis, I had a university diploma but had switched career focuses and was in my first semester of nursing school. Basically, I had no useful education yet.
Do you work? Yes, I work full time (wow!! I wasn’t sure I ever would again!).
What was your diagnosis?
Hodgkin’s Lymphoma Stage IIA Nodular Sclerosis. They never told me what stage I was when I relapsed but I assume about the same.
What are your career goals?
Currently working as a Public Health Nurse, working on my Master of Public Health. I want to get into Cancer Prevention and Supportive Care initiatives.
What were your first thoughts when diagnosed?
The room instantly turned to fog. I can still see that the air was thick and close and I felt like I wasn’t in my own body. After I realized what had happened, I resigned myself to fight. That was it–there was no other choice. I was going to beat it. Relapse is a different thing. No fog, nothing like that, just absolute doom, unshakable. That’s when I realized that I wasn’t invincible. That’s when I thought about death and thought about it hard.
How did your family react?
That is a topic that would take me years to figure out. Although supportive in many ways, they were a nightmare in others. My mother was a rock, an absolute rock, for my body, but not my mind. They resigned themselves to believing that there was no other option except survival. It was kind of like they went through the motions until it was finished. They were there physically to take me to appointments and my mother, being a nurse, was very supportive with medical concerns. But emotionally, my family was non-existent.
How did your friends react?
Some friends became non-friends. I received comments such as (and I quote…seriously), “If anyone was going to get cancer, Julie, it’s good that it’s you because you can beat it.” I also received a comment from a friend who was angry with me (I guess not so much a friend): “You would think that a debilitating disease like cancer would open your eyes a little.” That one I remember word for word.
There were the usual comments from school mates who didn’t know (I kept it pretty private for the most part): “Gosh, Julie, you look like shit.” or “Geez, aren’t you taking a lot of pills!” You just ignore it; it’s not useful to even be concerned, although it’s not easy to take!!
But they weren’t all negative. I made three friends who I will be friends with for life. A girl I had known for about a week offered to drive me back and forth from residence to Princess Margaret on any day she could and she drove me more times that I can count. That still makes me cry. Another girlfriend would sit there with me in the cafeteria as long as it took for me to nibble away at my plate until she was satisfied that I had eaten enough. “Eat your peas,” she would say. We still joke about that. People disappear because they can’t handle it and others are angels that come out of the woodwork. But for the most part, aside from a treasured few, my experience is that people our age are pretty useless, even now.
What did your treatment consist of?
Medical Side: Initial treatment was eight weeks of radiation, four weeks (20 days) of full mantle radiation at 4500 gy. Then I had four weeks off and then another four weeks to the upper abdomen and spleen at 3500 gy. Second go-round, they discussed transplant. They brought my case to rounds and my radiation oncologist, who is chief at PMH, told me that she had only ever heard of Hodgkin’s relapsing in the radiation field, she had never actually seen it. They juiced me up with six rounds (I don’t know why they don’t call it 12– it’s 12 hits of the same cocktail) of ABVD (adriamycin, bleomycin, vinblastine and doxorubicin)–six months worth. I was on neupogen throughout and I gave the injections to myself. I was very fortunate that I was only hospitalized once, for a week with febrile neutropenia.
Non-Medical Side: Chemo is definitely harder than radiation or it was for me anyways. Part of it is the extreme longevity of it!! In the middle of it, it felt like it would never end. I was very nauseous on radiation and lost a lot of weight but the skin burns, sore throat, odd tastes, Lhermittes syndrome and extreme fatigue were more tolerable to me than the gaunt, bald, pale, red eyed picture of a vampire I saw in the mirror most days on chemo.
I had skin and body pain, costal chondritis, bone pain with neupogen, nausea, mouth and throat pain, constipation, fatigue and weakness, and postural hypotension. I had a bout of undiagnosed chest pain and difficulty breathing, phlebitis, fevers (Ooh! Fevers are the worst), trouble sleeping, I think I peed eight times a night every night because of all that water I had to take in to keep my BP up. Geez, that list is LONG! And I’m sure I missed something but really nothing at all compared to what some have to put up with. I shouldn’t complain, but chemo SUCKS! At one point, I thought I would die. I really did. I look at what others go through and what I had to put up with was pittance but really, I thought I would die sometimes. That’s where the mental part comes in. I was strong as cement through radiation and a total wreck during chemo. Anxious and depressed, I felt like the world was just a cruel place to be. It took a long time to believe that I might have a normal life afterwards.
I started chemo two days after graduation from nursing school. I felt defeated, what else can I say. I saw my dreams melting before my eyes. I moved in with my parents in the middle of nowhere and there I sat for six months. It was a pitiful sight but I persisted and somehow I made it.
In which hospital(s) were you treated?
What is your current medical status?
Remission!!! I haven’t felt better in years. I’ve had a few minor things along the way but so far, so good.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Honestly, most people think I’m strong. I hear that all the time but, truly, I think it’s crap. You don’t have a choice, do you? You get cancer and then you deal with it. The person beside you would have done the same thing. I’m pretty darned happy to be here though, I must say. I don’t take things for granted and I really see the world differently. Some things that others my age think are so important just bore me to tears! I don’t want to say I’m strong but I sure know how to fight and I do every day!
What is/was the toughest part of your challenge?
Not having someone to talk to about the reality of it all, to talk about my feelings and what I felt I was facing. You talk a lot about your body but not about your mind and your heart and your spirit. I felt that I had to believe in myself, all by myself. Everyone else believed in my body, the body that I felt had betrayed me. I had to find strength deep inside. Sometimes I had to dig deep but it was always there waiting for me to unleash it.
What is/was the best part of your challenge?
I know now that I can accomplish anything. That’s a pretty powerful feeling! The other really amazing thing is that I met the man I will spend the rest of my life with four days after my 10th cocktail. My head was bald as a baby’s ass. It was Hallowe’en and I hadn’t been out in months but Hallowe’en is my favorite holiday so when I was invited to a party by my cousin, I spent two weeks sewing a costume. I figured, “Hey! I’m bald, pale, and skinny–vampire obviously!” And my legs were so skinny, I made the skirt really, really short. Plus it’s fashionable to wear wigs! I was sooo in cognito. I recited to my family over and over again for two weeks that I was going to prove that bald chicks could pick up hot guys. And guess what, I did!
I met a man and, for reasons that require a long story, I told him right then and there in a bar and made him feel my shiny head! The rest is history. We spent our third date in emerg, had a few interesting bald moments and promised to stay together forever before I was even declared remission. I’m still with him today; it’s been almost three years to the date.
I also learned to believe in myself. I went back to school, got my nursing degree, got the job I wanted and now I’m back in school to keep trying for more. I want to do something about this cancer, really do something about it. And I believe I can!
What really motivated you to keep going while you were sick?
I memorized the pattern of illness that I would have over the two week period. I would have different signs and symptoms that were somewhat predictable. I learned all about the different side effects of the drugs so that I could pin point what was happening to my body at any specific point in time. This was powerful and allowed me to stay one step ahead of the pain. It also allowed me to organize the symptoms so that I knew that, for example, in two days, I would be very sick to my stomach but on the ninth day, it would start to subside. I knew that on day six and seven, the depression would sink me to bottomless lows and knowing that this was a side effect of the medication, I could ride out the symptoms knowing that they would pass and take the feelings of doom as something to be expected, not something that might kill me. Once you are in control of your pain, you can deal with it in an organized fashion.
What lessons or messages have you taken away from your experience?
Believe. Believe in yourself. And even when the world seems like hell, wonderful things do happen, usually when you’re least expecting it. That it DOES get better but that better is what you make of it. Tomorrow might be worse than today but the day after tomorrow might be better. To take it one day at a time and learn to appreciate the beauty in the small things in life. The world IS a beautiful place if you only know where to look.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Geez–that’s a tough question. I have been diagnosed with Post Traumatic Stress Disorder. I’m supposed to be getting some psychotherapy but there is a waiting list. I think that anger pretty much sums it up. I haven’t moved past the anger stage of grieving and am going to need some help to do that. I think I’m going to live for now but I’m not sure for how long. The future scares the crap out of me but it’s been almost three years now and I feel good so it gets better as each year passes.
I figure that it’s a reality that I’ll have more crap to deal with in my life but I did it once and I’ll do it again. I feel that I’m only here for a limited time so I have to make the best of it. I really, really want to fix things, to do something so that HD rates in young women don’t continue to climb, so that little kids don’t have to suffer like this, so that no one will have to lose a breast, or a leg, or a spleen, or a mom or a son to this crap again.
I have to be honest, I persevere and I am functioning well in the eyes of some. I make money, I’m a grad student, I appear put together but I’m suffering inside. I am on an eternal roller coaster ride. Some days, I’m on top of the world and other days not so much, but the peaks and valleys keep me going somehow. The harder I suffer one day, the harder I work the next. Maybe I’ll pay for it someday but it’s the only way I know.
What are some preventative measures that people can take to lower their risk of having an experience like yours (if there are any you know of)?
1. Find people to support you, people you can talk to. I mean talk about the REAL stuff like infertility, the possibility of relapse, dying. Lots of people are too afraid to go there, afraid to discuss the really tough questions. Find someone who will go there with you because we all here know we have thought about it.
2. Find yourself something to do! When I was in radiation, I was in school. I put my heart and soul into my work and I even won an academic award. During chemo, I was stuck in the boondocks with no cable, no Internet, no video games, a 20 minute drive to rent a movie, no wheels, no close friends, squat. Doing nothing is the most painful thing in the world and it is a recipe for disaster. Find several things to do that you can tolerate and alternate between them. Put yourself in an environment with easy access to positive distraction and surround yourself with positive human (and pets if you like and are allowed!) support.
How are you connected with Young Adult Cancer?
The magic of randomness–surfing the net.
Getting real with it. I’m so tired of the happy pink ribbons (sorry breast cancer survivors, but I feel they are so disrespectful). Cancer isn’t happy; it sucks and we deal with it and we move on and do amazing things. Yes, I do believe we are better people for it I guess but let’s not sugar-coat the whole thing. What utter and complete denial. Let’s talk about the truth.