Current Age (at time of profile): 37
How did you find out you were sick? What events led to the diagnosis?
I woke up in pain Monday, March 20th, 2000 in Florida. I was 7 weeks away from graduating with my B.Sc. in Business with an Accounting concentration. I had intense pain on my right lower abdomen and wondered if maybe I had appendicitis. (Looking back now I see that I had a lot of indigestion and gas that I ignored from December to March because I thought it was probably related to eating unhealthy college food.)
I made an appointment with a local doctor for that afternoon and tried to ignore the pain for a few hours to get through my morning classes. After the first class I nearly passed out when I tried to walk down the stairs. I couldn’t do anything that moved my right side so I slowly hobbled to the elevator, my car, and the local hospital ER.
At the hospital they ran blood tests and did an ultrasound to see what exactly was going on. The doctor on call then passed me off to an OB-GYN who explained that there was a very large mass on my right ovary and it was either a twisting of the ovary that had filled with blood, a large cyst, or very unlikely, cancer. “But don’t worry,” he said, “Because you’re way too young at 29 to have cancer.” No matter which scenario it was I had to have surgery immediately and the on-call OR team was paged. (I was lucky to be attending college near one of the top teaching hospitals in the southern US. I was also lucky to have paid $150 for Blue Cross travel insurance for the semester as a student as this one week ended up costing them $70,500).
The worst part was calling my parents in Nova Scotia while lying on the bed in the OR prep area and tell them their only daughter was going into emergency surgery in 30 minutes, in Florida. They both cried on the phone and I tried to tell them I’d be just fine. At this point I was so exhilarated that the pain might go away that even the surgery didn’t scare me. The not knowing scared me more. The doctor was great and he reassured Mom and Dad that he would call them as soon as he was finished operating to let them know what had happened. (I later found out that the doctor also took the time to contact my college and let friends there know what was going on in addition to following up with Mom and Dad.)
Once they started surgery, the doctor realized it was cancer, but it seemed to be early stage so he consulted by intra-operative phone with a Gyn-Oncologist (who really should have done the surgery since regular OB-Gyns are not fully trained for cancer surgery.) and they decided to just remove the affected ovary and the attached mass and wait for the pathology reports.
What year was it? What was your age at the time?
It was 2000. I was 29 years old.
At what level of education were you at diagnosis?
I was working on a second bachelors degree.
Do you work? Yes. As an accountant for a regional fitness company.
What was your diagnosis?
Serous Papillary Adenocarcenoma of Low Malignant Potential (Ovarian Cancer that grows a bit slower than usual) Stage IC (tumor confined to one ovary but the tumor ruptured during surgery).
What are your career goals?
I really don’t know. I am currently evaluating if I really want to stay in accounting long term or if I just want to get the bills paid off and try something else. My outlook and priorities have changed since my diagnosis and I’m taking time to explore the possibilities, now that I am beyond the initial survival stages. I want to do something I like that doesn’t demand so much of my time. I want my time to be used for family and friends and travel.
What were your first thoughts when diagnosed?
My thoughts were a jumble of: “Does this mean I’ll miss graduation; am I going to live to see 30; what on earth is ovarian cancer anyway?” While recuperating at my apartment I did some online research and the statistics were pretty scary. The average survival rate across the four stages runs about 40 per cent. I wanted to be part of that 40 per cent.
How did your family react?
Mom and Dad were very scared because I was their only child and Dad’s mom had just died in 1998 with breast cancer, although she was in her 70s when she was diagnosed.
|My sense of security was shaken because my own body betrayed me with this stuff growing inside.|
How did your friends react?
I have awesome friends! They were shocked when they heard and three of them immediately offered to take a leave of absence, farm out their kids and drive up to stay with me for as long as it took. That is friendship when it really counts. Friends and family kept my hospital room phone ringing enough that the nurse said I needed a social secretary! I have always felt I could talk with my friends about my hopes and fears and that has been a great blessing.
What did your treatment consist of?
Medical Side: The main treatment and diagnosis for ovarian cancer (OVCA) is surgery. You can’t have an accurate diagnosis any other way. I had three to four hours of surgery that Monday night in the ER to removed a tumor that was 13 cm x 12.5 cm x 8.5 cm (about the size of a large grapefruit) and then I stayed in a private room (women with Gyn surgery had a special floor with all private rooms) with my own nurse. It was like a hotel with great room service and wonderful food. I was finally released on Friday when my parents arrived. The doctor said I would take four weeks to recover and I did it in two because I wanted to graduate on time and not repeat a year.
Because my cell type was a slower growing variety (A rarity for this type of cancer) surgery was the only treatment. Radiation and chemo target fast-growing cancer cells so they are useless on the slower ones. I did have a recurrence and more surgery in March 2003 while working in Virginia. My Gyn-Oncologist in Virginia isn’t sure if this was a regular recurrence or related to the fact that my first surgery was done by a regular Gynecologist who could have missed something. (Studies show that regular Gyns miss more cancer cells than the Gyn-Oncologists in the first surgery which greatly affects survival for OVCA patients, and yet how many people know this?)
My second surgery was more extensive with the remaining ovary removed (there was cancer on the outside), a full hysterectomy, omentectomy, and full staging to determine if the cancer had spread. Again no chemo, but it took several months to get over the surgery and more than a year to get some energy back.
Non-Medical Side: I was pretty weak after the first surgery. Whatever they used for anesthesia really scrambled my brain. I am an avid reader and I couldn’t focus long enough to read a sentence for at least 3 weeks after the surgery. I still to this day don’t feel that my memory and focus are what they used to be and I forget a lot of things I never used to forget. The mental fog was not nearly as bad with the second surgery but I try and avoid courses that would demand a lot of memory or focus.
The second surgery took longer physically to get over. I was in the hospital another week and I had terrible gas for several weeks as my intestines rearranged themselves. They lift the intestines, bowels, all that stuff completely out of the way during surgery and then tossed them back in when they were done like a pile of noodles. I have the surgery transcripts. Interesting reading when you get beyond the fact that it happened to you. The gas pain was worse I think than even the surgery pain. I had 32 shiny staples holding my insides together and it was slow going to do my laps around the hospital floor toting the IV pole.
I felt extra tired for years after surgery and am finally getting my energy back with eating better and regular workouts at the gym. Emotionally I did better from 2000-2003 than I did from 2003-2006 as the second surgery involved more waiting and thinking than the first surgery. More time to be scared and wonder “what if?” I didn’t deal well with the fear and I had a lot of anxiety that got worse the farther I got away from the initial diagnosis. I should have felt better and instead I was worse. Part of this was the crazy work schedule and demands I had as an accountant in Washington, DC. I used food and binge eating to cope. After all, if I was going to die it would not be without chocolate and cheesecake! I found RealTime Cancer the summer of 2006 and attended Retreat Yourself 2006. It changed my life! (More below).
In which hospital(s) were you treated?
My first surgery was at Sacred Heart Hospital in Pensacola, Florida. The second one was at Fairfax Hospital in Fairfax, Virginia. Ongoing checkups at the QE II Dixon Building in Halifax, Nova Scotia. I’ve left body parts all over North America so I guess I am well traveled!
What is your current medical status?
Remission. No evidence of disease.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
Spiritually: I believe in God and accepted Him as my Savior at a young age. I’ve grown even closer to the Lord during my cancer journey and I do not think I would have managed as well as I did without His strength and encouragement. I do not waste time asking “why” because I know good and bad things happen to everyone.
Physically: Lack of energy is my biggest ongoing problem. Also forgetfulness and short term memory. I have issues dealing with stress and work to avoid it or deal with it depending on the circumstance. I am working with a naturopathic doctor to help get everything in balance and to increase my energy. I am still not up to my pre-cancer level but I aim to be close by the end of 2008.
Emotionally: This has changed me the most emotionally because having cancer at 29 really decimated my sense of invincibility, that feeling of having all the time in the world to do things. My sense of security was shaken because my own body betrayed me with this stuff growing inside. I’ve been working with several people over the years to learn to deal better with everything that I’ve been through and how to move forward in life after the challenges I’ve faced. I don’t have nearly as many “poor me” days as before but I do have to watch that I don’t push too hard and get too run down.
Socially: Well I didn’t have too much of a social life before cancer and I’d say it’s about the same now. Lots of work and things to be done and not enough free time – something I’m working on getting more of. Trying to find Mr. Right is now much harder because he will have to accept that I have had cancer and I will never have kids of my own. I am okay with adopting or finding a pair of really cute dogs. But the no kids thing can be an issue with a lot of guys. I know “the right one won’t care” but he’s certainly been nowhere around lately and I would like to get married before I collect my old age cheque!
What is/was the toughest part of your challenge?
Facing my mortality and the lost time in my career. I am so far behind where I should have been without cancer and now I don’t even care. In fact if I could afford to change careers I really would.
What is/was the best part of your challenge?
I’ve learned so much about my friends and myself. I have a clearer picture of what really matters to me and what my priorities are.
What really motivated you to keep going while you were sick?
The knowledge that tomorrow has to be better and one day I’d get through it and move on.
What lessons or messages have you taken away from your experience?
The main things I’ve taken from this: Life is precious, make it count for eternity. Learn what is important to you and do it. Try to not waste time doing things you don’t want to do.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Pre-diagnosis I was terrified at the idea of ever having cancer. Now I’ve learned to live with it most days. Sometimes I’m a bit more daring than before. After all, what should I be scared of? I’ve faced cancer. Been there, done that, and have lots of t-shirts.
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’ve asked my specialists and they all say they do not know what causes this in younger people.
I’m guessing it was the blueberry field spraying around our home when I was growing up. There was no cancer in my family.
The general recommendations to avoid OVCA are: eat well, keep a healthy weight, have at least two children (more pregnancies equals less estrogen exposure and number of periods), use birth control pills for at least five years. I was never overweight before cancer, used birth control for several years for hormone regulation, ate fairly well except for university and was active.
The biggest thing for ovarian cancer is awareness. There is currently no test that can detect OVCA. If you experience bloating/swelling around your abdomen, ongoing gas/indigestion, change in bowel/bathroom habits, pain during intercourse, and these symptoms last longer than two weeks or get worse, see your doctor and get OVCA ruled out. A combination of a CA125 blood test and a trans-vaginal ultrasound can tell the doctor if something’s not right but neither test on its own is absolute. My CA-125 was low the week before my recurrence so I obviously don’t use that test anymore. If you keep having symptoms do not let your doctor ignore you without running the appropriate tests. The difference between Stage I and stage IV can be as little as two months. Stage I survival statistics run about 85 per cent: Stage IV run closer to five per cent.
Did you attend any support groups during your challenge?
If you did not attend a support group, why?
There were none available within a two hour drive for the first five years. Then the ones after I moved were for seniors, and I have a hard time feeling connected to someone who has already lived their life, had kids, married and retired and now has cancer. There is never a good time to get this, but I’d much rather face it after living my life than before I even get out of the starting gate.
Try juggling student loan payments, oncologist visits, university, and then some dating in your spare time. There’s a world of difference facing this in your 20s and 30s compared to what seniors face.
If there had of been one available I would have attended and I think it would have helped.
Retreat Yourself did more for me than words can express. I can’t imagine what a group of my peers would have been like going through this. I probably wouldn’t have had as many emotional issues and feelings of isolation as I did.
I’ve just heard there’s one for young adults starting in Halifax. I plan to be there.
How are you connected with Young Adult Cancer?
I found Young Adult Cancer the summer of 2006 and attended Retreat Yourself 2006. It changed my life! There are no words to describe the comfort of finding other young survivors who felt exactly the same as I did and who had gone through the same emotions. The mindfulness meditations helped me to be aware of myself as I lived life and to be in the present instead of focusing all the time in the future and the past. The sessions surprised me as I never realized I had so many things I hadn’t dealt with.
I love Young Adult Cancer! You are a part of my family. You guys gave me my life back and let me know I wasn’t alone in this! If I ever win money, I will be wiring some your way.