Age at Diagnosis: 22 (1997)
Covehead, Prince Edward Island
How did you find out you were sick? What events led to the diagnosis?
I had night sweats, put on a lot of weight , and I was itchy everywhere. Six months (November) before my initial diagnosis I went to the doctor to complain of feeling tired and mentioned my itchiness and she gave me ‘gold bond’ which, obviously did nothing. (I would scratch myself with a hair brush until I was red raw, especially in the feet and legs). I then went out for dinner with friends one night (April) and felt a lump in my neck. We all laughed thinking it was a ‘fat globule’. After a couple months I noticed the ‘fat globule’ had grown, and I went to the doctors and he who said it was just a swollen gland and if it was still there in 3 weeks to come back. 1 week later I was at work and I had a huge pain in my neck and couldn’t swallow well. I met my dad the next morning and went to the doctors who seemed a little surprised with the size of the lump and 4 hours later I was sitting in the ‘nose, throat and ear’ specialists’ chair. I am fortunate to have had my dad with me, as I don’t remember much after he said that he ‘thought’ what I had could be cured by chemotherapy and radiation… 3 days later I was in the hospital for ‘day surgery’ for a biopsy of my lump. To shorten the story, during that routine biopsy, my jugular burst and I woke up 5 hours later getting my first two litres of blood (the lumps had grown around the jugular). I was in the hospital for a week before the oncologist came to tell me I had Hodgkin’s disease and I was to start chemo the next day.
What year was it? What was your age at the time?
1997, I was 22 years old
At what level of education were you at diagnosis?
Third year university (BSc)
Do you work? Working for the World Health Organization!
What was your diagnosis?
Hodgkin’s disease, stage IIIB
What were your first thoughts when diagnosed?
I was in the hospital one week before I was officially diagnosed, so I had read lot of books and had ‘sort of’ self diagnosed myself. However, hearing the doctor officially confirm that I had cancer, I remember crying. Crying a lot. The only words I could mutter, when asked if I had any questions, was if I would lose my hair I think that it is a valid question! I walked out of the hospital with tears rolling down my cheeks making the decision to start off chemo with an already shaved head!
How did your family react?
They were super supportive, but we were all a little scared as no one knew the ‘whats’ and ‘hows’ of cancer. We all had to deal with this in our own way.
How did your friends react?
I lost a few, I gained a few – I was really scared at first that I would be treated differently… I remember yelling at one friend and chanting ‘cancer – cancer’ at her in the hospital room, as she refused to say it.
What did your treatment consist of?
Medical Side: Out patient: chemo every second Friday for 6 months (6 cycles ABVD), then 20 days of radiation. I was diagnosed the second time in 1998, and then had one week in hospital chemo every 12 hours (2 cycles mini BEAM VP-16(Etoposide) Melphalan) and then 3 weeks off, and again one week every 12 hours (basically high-dose ablative chemotherapy with autologous stem cell transplantation 4 weeks after second dose of chemo).
Non-Medical Side: I was tired and mad, and sad. More mad at the people who looked at me without hair. Sad that I couldn’t do everything my friends were doing at the time – although I remember doing it anyway, like going sea-dooing the day after one of my chemo treatments I tried to prove the illness, and those around me wrong. I was really sad for my family, especially my sister, to have to go through this. It couldn’t have been easy for her.
In which hospital(s) were you treated?
Queen Elizabeth Hospital in Charlottetown, PEI. Windsor Regional Hospital in Windsor Ontario for radiation (at that time rad wasn’t available in PEI) and in the Queen Elizabeth Hospital in Halifax, NS.
What is your current medical status?
I am 6 years post BMT: first 5 years post meant intensive check up’s every year, and now I only have to get CT scans and check-ups every year until 2008.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Life is different, and I see things differently. I am fortunate and I count my blessings every day – and if I forget then I try to remember At first it was hard, as every bump and crook I self diagnosed as cancer, but I learned to live with my fears. I don’t work against them, and in fact that has helped heal me.
What is/was the toughest part of your challenge?
My toughest challenge was realizing who I was, and what I was – where did I fit in. What did I want , and where did I want to go, and why. I have never been a spiritual person, and this hasn’t made a big difference, although now I think I ‘feel’ more. I am fortunate to have my dad who sent me off to Switzerland within a year of my BMT. As soon as I graduated – actually 3 days later, I went for a 3 week trip across Canada and then flew to Switzerland; fortunate to find a job; and fortunate to have met someone who has helped me see that life is really, really good and that includes what to do with all those obstacles you face every day.
What is/was the best part of your challenge?
Realizing who it is you really are, and feeling it. Making someone else feel your warmth and happiness. Being fortunate to be someone others will remember.
What really motivated you to keep going while you were sick?
My mum and my dad, and especially my sister (who dutifully kept me smiling: standing on a chair in the isolation room singing and dancing to a mixed tape she made just to make me laugh!). I tried to stay strong, but my illness was never about me, it was all about them.
What lessons or messages have you taken away from your experience?
Enjoy, smile, laugh and talk to everyone — with a smile. Everyone needs a smile, even if they may already look happy. I also realized that not everyone thinks about illness cancer the same. We are all very different people and we all have to be there for each other.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
6 years later, I am so fortunate : 1. to be who I am; 2. to have met the people I have met; 3. to be able to smile and laugh everyday; 4. to ‘feel’ with all of my emotions; and 5. to be alive. I wouldn’t wish cancer upon anyone, but if you asked me who I would be now, without having gone through cancer, I couldn’t tell you. I am fortunate to have had this ‘pain-in-the-neck’ (literally!) and to still be here to talk about it. This has only made me stronger. I think it actually happened at a good time in my life – it was the nudge I needed to ‘see’ what life really was about: love, family and living.
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
I have never read anywhere something that says “this causes Hodgkin’s Disease”, all I know is that it MIGHT have something to do with people who had tonsillitis (although I didn’t and my sister did) and it might have something to do with the Epstein virus (the virus that can give mononucleosis and I had mono at 15). We could also blame it on environmental factors: like I do… who knows think about pesticides and agriculture. I believe that a healthy diet, physical activity and happiness will boost your immune system to hopefully fight whatever your body comes across in life – it might not but I know from experience that this boosts, not only the physical state, but the mental state.
Did you attend any support groups during your challenge?
I had a connotation of what it was (think alcoholics anonymous) and I was hesitant to go. I tried to go to one, once, and it was a lot of ‘old’ people and it smelled ‘old’ and I ended up trying to make them smile it wasn’t really my thing. I cannot dwell on the ‘sickness’. I need to talk about it in a practical way, and laugh about it or cry about it but not have any pity thrown at me. There was no other support group : I knew no other young people. I was alone until my first week in hospital on my first high dose chemo treatment to prep me for my BMT. Elaine. She was one year older than I was. We became each others support. We used to meet at Tim Hortons for ‘bitchin’ sessions (ended up to be laughing and giggling sessions!). She had leukaemia and died a year after we met. I really, really miss her. I think to have others around you that are your age, that know what you are going through helps a million. You cannot always connect to the ‘older’ lady sitting in the ‘chemo chair’ next to you…
How are you connected with Young Adult Cancer?
How funny!!! I was on a crazy trip (Young Entrepreneur course) in Victoria BC and I met a guy who had a friend Geoff he gave me his email and there you go… my first real support system! I wish I had known about it at the time.
How long has it been since your last treatment?
My last treatment was in September 1998 when I had a BMT.
How do you feel today, physically (any short or long – term affects of your diagnosis/treatment), emotionally, spiritually?
7 years post transplant I have to go to a cardiologist to monitor my heart as I have been told that chemo/rad could have side effects on the lungs and heart. I have just had a test and an endurance test but everything looks good. I have to get my thyroid checked every year as I am close to being in hypothyroidism.. what ever that may mean!! I must get a mammogram done this year as well and all being well, then again every year after I turn 35.
I still get scared and stressed at every annual check up stressed something may be found. It doesn’t help that I have started to get my annual tests done in Switzerland, so I don’t have the same circle of support I did when I was in PEI . It feels different (and very new to me). Well we pay a lot in medical fees so it is in their interest to be nice to us I guess! My Oncologist is extremely helpful, and constantly asks me if I understand everything she is saying. She calls me when tests come in just to tell me she received them (we get copies of the blood tests sent directly to us : not always a good thing as I try and analyze it myself!). When we meet, she gives me the latest up to date research and what is going on concerning any follow-up tests I should get. She is extremely helpful and very preventative, as my chances of having four different cancers are higher now because of the treatment I received to cure the first cancer I had. At first I was terrified by the thought of this knowledge (it seems easier to live in the dark!!) However, now I am informed. I know my risks and my chances and I take that with a smile. I am alive because of this first ‘toxic’ treatment so anything after that is going to be a breeze!
How has your physical, emotional and spiritual well-being changed since the last time we checked in with you?
The first time I did the profile, it brought up a lot of memories and it felt like I had to deal with them all over again. But in short, it was a blessing in disguise, as it helped me to reconnect with myself. I am still not a spiritual person, but I have become a bit fanatic about working out (if we were to get psychological, you could say it was because I don’t want any of these heart and lung side effects to stop me living life!). Exercising is also a great way to stay happy, healthy and feeling wonderful about yourself. However, waking up at 5.45 am every morning doesn’t always make my partner, Antonio,happy – but good excuse to both go to bed at 8.30pm!!
What are you doing today? (school, work, recovery, etc)
I am still working – but have changed jobs. I now work in human genetics that deals with genetics (concerning cancer, CVD, asthma, diabetes and birth defects) so I am up to date on a lot of things that have personal meaning to me, which makes it easier to come to work!
What are you goals for the future?
Have been twiddling with the idea of training for a marathon and possibly doing my PhD . But these are just thoughts at the moment.
When you see yourself 10 years down the road, how does the picture look? What’s in it, what do you like, what do you not like?
In 10 years I’ll be 40 years old. Therefore, I have surpassed the 30’s. Now, that means I have to decide what I want to accomplish in my 30’s like my PhD??! At this time in my life, the future’ is next week, and at the moment I cannot decide what to wear this weekend, so I am not going to stress too much! As my mum always said, you live by your choices and your consequences and so every path I choose I will take as a challenge and thus a new experience to add to my list.
Do you have any advice for other survivors who may be where you once were?
Stay safe.. and as my dad always said if you cannot be safe, be careful. We only have one life; use it to its maximum.