Age: 35

Hometown: St. John’s NL

What was your diagnosis?  GIST (Gastrointestinal Stromal Tumour)

What school did you attend?  Memorial University

What are your career goals?  I don’t have any career goals, just a life goal to remember to live each day to the fullest; who knows what tomorrow will bring.

What is your occupation? I was on maternity leave from Bell Aliant when I got sick. I continue to work there, now as a Service Support Technician.

 

Your Cancer experience:

How did you find out you were sick? What led to your diagnosis?

At the time, I was a mother of newborn twin boys who had quite a number of medical issues. It was constant appointments for our boys; I was at hospital with one if not both of them weekly for months. I knew I was sick but I kept pushing ahead. I did speak to my GP about feeling unwell and she suggested I stop breast feeding and see if I could get my strength back.

In the fall I ended up in the ER with what presented like a heart attack (actually severe esophageal spasm). The EKG came back normal, but as an afterthought the doctor suggested an upper GI series (barium swallow) the next day just because he wasn’t sure what was going on. Since one of my boys was still very sick—spitting up constantly and not gaining much weight at nine months of age—and was having that exact test at the exact time the next day as mine was being scheduled for, I felt I had to be there for him instead of getting my test done. But the ER Doctor pushed for it and my husband made the necessary arrangements.

I can remember saying and thinking that evening while in hospital whatever it is that is going on with myself and my son, let it be wrong with me, let my boy be well. I was the adult I could take whatever life threw at me, but not my baby. Within a week my son was keeping food down for the first time in his life. He stopped crying all the time. For the first time I had a healthy baby. Meanwhile I began rounds and rounds of further testing, to discover a lemon sized tumor at the junction of my stomach and my esophagus.

What year was it? What was your age at the time? That was in 2004, I was 28.

In which hospitals were you treated? The tumour was removed at St Clare’s Mercy Hospital. Once they determined it was GIST, I was then referred to the Dr. H. Bliss Murphy Cancer Center

At what level of education were you at diagnosis? Bachelor of Science (Hons.)

What were your first thoughts when diagnosed? Grateful it was me and not my son.

How did your family react?

My husband and my in-laws were shocked, and of course saddened, by the news, but they came through for me. My husband never left my side; I did not spend one night alone in hospital—every test, every appointment, he was there with me. Of course, that meant our boys needed care. My in-laws made a bedroom for them in their house and took care of them while we couldn’t.

How did your friends react? Were you treated differently, or did things remain the same? Since I was on strict bed rest for the majority of my twin pregnancy (both in and out of hospital), I had already weeded out who my real friends were. It’s strange how difficult times can do that.

What did your treatment consist of?

Medical side

I had a complete resection of the tumor and in the process removed a large portion of my stomach. A second surgery was discussed since there was no clear margin, but after seeking other medical opinions, it was decided to wait and see about re-growth to see if it would be caught in time with CT scans. GIST does not respond to chemo or radiation and the only option presented to me was Gleevec which was considered more of an experimental drug at the time and therefore not covered by any drug plans (provincial or private). Given the cost, it really wasn’t a viable option for me.

Non-medical side

Physically, it was a very difficult surgery to bounce back from. I found it difficult not being able to care for my boys when they needed me. I was not able to carry them, bathe them, or even lift them to change their diapers. Emotionally I was just grateful that both of my boys were healthy and growing. I felt stubborn and defiant when given my survival rates. I know what it is like to grow up without a mom; my mom died of Non-Hodgkin’s Lymphoma when I was 14, but it felt like I lost her years before to the disease. I just knew that couldn’t happen to my boys. I had to be well for them.

What is your current medical status?

I am well. I have oncology appointments every six months and I pushed CTs (given their radiation) out to yearly with my GI doc doing a scope yearly as well.

How is life different for you now post diagnosis?

Physically, I will never by the same, and I am not just referring to major scars. I will be on medication every morning and evening for the rest of my life to prepare my stomach for food. I have to be very careful of what I eat and drink, and even still I often times have digestive issues.

I have changed as a person I am not the same as I used to be. I see the good more often in my life now. The glass is always half full. Everyday moments that once passed me by, I now take enjoyment in. I am living life now and I don’t think I did before.

What was the best lesson you took away from your challenge? To enjoy Life, and not to sweat the small stuff.

What really motivated you to keep going while you were sick?

That one is easy—my boys; husband and sons. It would have been so easy to give up; fighting is hard but just thinking about them makes the fight worthwhile.

How are you connected with Young Adult Cancer Canada?

I was at the cancer clinic waiting to see my social worker when I noticed a poster for Retreat Yourself 2006 in Montreal. I had just finished doing some work with Relay for Life and felt very disconnected. The survivors I had met were so much older than me. I had my boys walk with me for the survivor walk and all the other walkers were talking to me about their grandchildren. Even though surrounded by other well-meaning survivors, I felt very isolated like they just didn’t get it. Ever since the retreat I have been connected to YACC and always will be.