Hometown: Winnipeg, Manitoba
What was/is your diagnosis? Acute Myeloid Leukemia
What school did you attend?
University of Winnipeg for my bachelor of arts degree, University of Manitoba for my bachelor of education.
At what level of education were you at diagnosis?
I had two university degrees
What is your career goal? To find something I enjoy doing and to own my own business.
Your cancer experience:
How did you find out you were sick? What led to your diagnosis?
Well, I had noticed that my second and forth toes on both feet were getting purple during one winter. I thought it strange, but figured it would go away, and it did. However, it returned the next winter, so I decided to inquire.
I was told to go see a Rheumatoid Arthritis specialist and after some blood work was drawn, she immediately told me that I needed to see a hematologist at CancerCare Manitoba. She emphasized to me, “There is no need to worry—you don’t have cancer, that is just where she works.”
And so I went and we found out that there was a major problem with my counts: they were all low. My red and white blood cells and platelets were low, and my liver was not functioning properly.
We thought about doing a bone marrow biopsy, but the doctor decided against it at the time. That began two and a half years of trial and error tests.
Then, in the summer of 2011, about mid-July, bruises showed up without cause. I should have gone to see a doctor, but stubborn me waited until my scheduled appointment in September because I thought there was nothing wrong. That is when it all changed.
I had blood work drawn on a Thursday, I was called into do a bone marrow test the following Tuesday, and I received the worst news ever after that. I had AML and needed to be admitted into the hospital that day and treatments would begin on Friday.
What year was it? What was your age at the time?
September 21, 2011. I was 29-years-old.It was the day before my fourth wedding anniversary!
In which hospitals were you treated?
Health Science Centre on the GD6 ward
CancerCare Manitoba, BMT Clinic
What were your first thoughts when diagnosed?
My first thoughts—if my memory serves me well—was that I didn’t really react. I just listened to what the doctor was telling me and then I said, “Ok.” I do remember that calling my husband right after that, and he wasn’t able to answer his phone because he had no reception. Then I called my mom, dad, grandma, both of my brothers, and my in-laws. I guess that I just made sure I called who needed to be contacted. Finally, I sat down and thought to myself, “What does this all mean? Cancer? Me?”
How did your family react?
My brothers came over immediately to be with me because they knew that I was home alone and that I wasn’t able to get in touch with my husband.
My mom was very upset, but she kept saying, “We will get you in and better in no time, everything will be OK, Jenn.”
My dad didn’t know what to say; he couldn’t believe this was happening to his little girl.
My grandma was very supportive, she said I didn’t need to worry, as my grandpa would be watching over me and will make sure that I pull through this. (He passed away on May 31, 2010.)
My husband (once I was able to get a hold of him three hours later) immediately sped home, gave me a huge hug and said, “We are in this together, whatever needs to be done, were going to do it. We will get through this; let’s stay positive.”
My in-laws all started praying that night and haven’t stopped. It has been 13 months now.
How did your friends react? Were you treated differently, or did things remain the same?
My friends were all supportive as well. They all said, “Kick its ass, Jenn!”
Each one of them had nothing but positive things to say to me as well, like, “You are so strong,” “You’ll beat it,” and “Stay positive.” If there was anything I needed, they were always there for me. They also organized a fundraiser for us. Everyone was extremely supportive, visiting and calling often. I think many were very shocked that this had happened to me, but were all very involved in making me feel as normal as possible and that things would only get better.
It is times such as these when you see peoples’ true colors. I am blessed to have gone through something like this, as it has solidified many of my friendships and helped mend others.
What did your treatment consist of?
Stage 1: Induction chemo as an in-patient
- Daunarubisin—three days worth, and Cytarabine—seven days worth, and, had a ton of tests done for baselines (heart, lungs, teeth).
- We watched my counts/immune system decline every day.
- I found out I needed HLA-matched platelets (it was awful. I went had headaches, fevers, and chills).
- I had a lot of trouble with my intravenous lines.
- My hair started to fall out, it was very scary and upsetting. I ended up shaving it off.
- My stay in the hospital was longer than expected (a total of five weeks) as I didn’t recover as quickly as the doctors thought I would. That was the first problem that occured!
- Everyone seemed to visit during this time versus later on.
- My grandma called me every day!
- My husband stayed with me for the entire five weeks!
- I felt okay during this stage, there didn’t seem to be too many side effects other than losing my hair and ability to eat for a while. Mntally I was overwhelmed with so many decisions, visitors, tests, etc.
Stage 2: Consolidation chemo as an out-patient
- Cytarabine–seven-days worth.
- It was hard to travel and had to spend hours in clinic.
- Second problem that occured: I ended up with an allergic reaction to the chemotherapy (cytrabine syndrome) and was rushed back into the hospital. I had extremely painful migraines for two days. I couldn’t move or talk. They didn’t know what was wrong and preformed a ton of tests of me to try and figure it out. I was given a ton of fluids and antibiotics immediately, and as a result of it ended up with fluid in my lungs and needed to go for a bronchoscopy as well. They ended up giving me steriods which was successful, but not a fun experience. I was not myself and very depressed for two weeks.
- I was recovering in the hospital for another four weeks.
- It was really upsetting because this was an unforseen issue.
- I was there during my 30th birthday, but I was able to be discharged over the Christmas holidays!
Stage 3: Bone marrow transplant
- I received chemo and total body irradiation
- I had to spend New Year’s Eve in the hospital, which was yet another bummer
- The transplant went well and only took a couple of hours
- The third problem that happened to me: I had some sort of negative reaction or over-reaction to the combination of the chemo drugs and radiation that resulted in almost third degree burns on many parts of my body (armpits, mouth, behind my ears, underneath my breasts, tummy, genital area, behind my knees, ankles, hands, and feet). I also couldn’t walk for about three days, I was not able to eat for 15 days, and I couldn’t talk for two days. I ended up requesting steriods again to help me with the extreme pain and to hopefully heal whatever was happening to me. It worked and I slowly began to recover.
- I was in the hospital for five and a half weeks this round.
- I was painfully ill this time around and I dropped to 86 lbs, lost a lot of muscle, experienced severe depression, couldn’t eat, couldn’t sleep. To sum it up: this was the lowest I had gotten.
- As time went on, though, I saw my counts going up and things started to get better. The next thing I knew, I was going home!
Stage 4: Recovery at home
- I am currently taking a lot of medication and supplements to help with the transplant and graft vs. host symptoms. We are slowly trying to taper me off.
- I have drug-induced diabetes that will hopefully resolve once off I’m of the steriods.
- I went through shingles.
- I am going through menopause, which is really upsetting as my husband and I were planning on starting a family before this all happened.
- Resuming my normal activities has been a struggle, but I am trying and each day is a new day and a better day.
What is your current medical status?
How is life different for you now post diagnosis?
Life is good. It’s hard and different, but good. It has been hard to miss events and other regular stuff, but I remind myself what I am able to do right now, and that is OK.
I am gaining more strength and working out every other day.
Emotionally, it is a struggle, but I am happy to have made it this far and will continue to get better.
Socially, I am regaining friendships, and enjoying every moment I have with the people I love.
Spiritually, I am learning to accept me for me, that life is precious, and to not take anything for granted.
What is the toughest part of your challenge?
The toughest part for me is knowing that whatever life I had before is gone. I have to work on a new life now. I do however, feel that I owe cancer my life because I have become a better and healthier person because of it.
I am a planner and it is very frightening to not be able to be in control of my own life.
It has also been difficult to have some of life’s options taken away from me. From something so small such as eating whatever I would like, to really significant things like having children.
What was the best lesson you took away from your challenge?
To love, to show and speak your love, and to live and appreciate every moment we have with the ones we love and the time that we have on this earth.
To not stress, to not be afraid, to trust myself and listen to my inner wisdom, and believe in myself and that I am worthy.
What really motivated/motivates you to keep going while you were/are sick?
In the hospital (during treatments): I would always think about the people who were counting on me and praying for me to pull through it and to not let them down. It wouldn’t have been right for me to give up.
My mom and my husband were there with me each and every day. I wouldn’t have been able to do it without them. They helped me pull through the really gloomy times and laugh with me during the really great times!
Out of the hospital (recovery): I think that remembering what I have made it through thus far makes me such a better women than I ever expected and that I am grateful for that. I aspire to bring joy and happiness into the lives that have supported me through my struggles.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Some of my thoughts haven’t changed, such as I still wonder why me? What am I supposed to learn from this? I am still scared.
I am, however, optimistic of my future and what it may hold. I also feel privileged to have met the people I did throughout my journey. I am part of the Cancer Clan now and I am proud to be a SURVIVOR!
It has also allowed me to see the world through gentler eyes and whispered to me the secret to happiness. I wish to live the rest of my life with the people who are dear to me and love them with all my heart.
What are some preventative measures people can take to lower their risk of having an experience like yours?
I would have to say to eat a balanced diet, exercise regularly, go to your doctor, do not smoke, do not drink excessively, treat your body with respect and don’t take it for granted, and only you know what is going in your body so trust your instincts. Iinquire if you think something is wrong, don’t just think that you will get over it because sometimes it is out of your control.
Did you attend any support groups during your challenge?
Yes–Mindfulness Based Stress Reduction (fall of 2012) and I plan on attending the art therapy classes in the spring of 2013.
If so, what was it like? Did you find it helped?
I enjoyed it a lot more than I thought I would. I was scared at first, but then I realized that I needed it. I did it to prove to myself that I can do things on my own, that I can commit to things, and learn how to be less stressed and enjoy life more.
I hope the art therapy will allow me to release even more of my negative feelings about this experience and appreciate life as it is now and moving forward.
How are you connected with Young Adult Cancer Canada?
It was mentioned to me by one of my mothers co-workers at CancerCare Manitoba.