by Sharon Neff
Honourary Cancer Survivor
Whitewater Relay for Life
I am truly humbled to be the honourary cancer survivor chosen for Whitewater Relay for Life 2015!
Two years ago I never imagined standing here tonight sharing my story. I listen to people’s stories every day through my work supporting children and youth who have witnessed domestic violence.
On January 22, 2013, what started out as a regular ultrasound to aspirate cysts, turned my world upside down. I remember sitting in the office of the Radiologist at PRH, who is also a friend. When you get to this stage you just know something isn’t okay. She started with “It’s not good!” Then she showed me my Mammogram and pointed to the large white area indicating cancer. She estimated that the tumor was 4-5 cm and aggressive. She carefully tried to console me and gently described what to expect in the next few weeks. I was taken back to the examination room for a biopsy of the tissue in my right breast.
When I left the hospital my head was spinning. Where to go, what to do! I contacted my manager and explained that I wouldn’t be returning to work. By the time I got to my car in the parking lot she was there with a hug and said she was taking me for a coffee and a chat! We laughed and cried and ironically I felt somewhat better!
I think the hardest part was telling our families and our four kids. After we spoke to our kids we invited our parents over and shared the news. What a difficult task to portray the look of confidence and reassurance on the outside when on the inside I was totally freaking out!
I continued to work full time until the Mastectomy which was booked for Feb 26, 2013. I remember getting a call from Dr. McPhearson exactly a week after the biopsy to confirm that it was indeed Cancer, and to be more specific I had HER2 positive (estrogen) breast cancer. Things happened quickly during those 33 days from diagnosis to surgery.
There were MRI’s, CT scans, bloodwork, ultrasounds lymph node biopsy, ECG, bone density, chest x-ray and pre-op for surgery.
Recovery from the Mastectomy went better than I had expected. Follow up with Dr. Graham confirmed three lymph nodes were removed that were also cancerous. The size of my tumor had doubled by the time he performed the mastectomy. Dr. Graham wished me luck and told me to prepare for aggressive chemo treatment!!! At this time I had connected with an amazing three- time cancer survivor named Lisa Bradbury! She calmed my fears, gave me hope and explained the next steps of Chemo and Radiation in plain English.
Although one phase of this journey was complete, the bigger, tougher part was yet to come. By early March I had met with both my Chemo and Radiology Oncologists. There were more tests and lots of information sessions. I made eight trips to Ottawa in that month.
I was learning so much about chemo meds, side effects and radiation… and just when I thought I had a handle on things I was asked to consider participating in a double blind clinical trial study for HER2 positive breast cancer patients. I was given a huge package of information to read and told to make my decision by my first Chemo April 29/13.
The aim of this study is to investigate a new drug called Pertuzamub, which also acts on HER2 markers of the cancer cells, but in a different way than Herceptin. Herceptin is the standard treatment in Canada for breast cancer. Health Canada has not approved the sale or use of Pertuzamub for HER2 positive breast cancer patients, although they allowed its use in this clinical study. Approximately 4,800 patients will take part in this study, half will get the pertuzamub and half a placebo. We will never know which one we were given. Pertuzamub was given accelerated approval by the US food and Drug Administration for injection with standard chemo drugs June/2012.
I researched the drug and spoke with a trusted friend and pharmacist as well as my brother-in law’s friend, who just happened to specialize in the field of cancer research at the Fred Hutchinson Cancer Research Centre in the USA. Both men agreed that this was an opportunity not to be missed! So I agreed too! What’s one more drug in the cocktail mix….right???
Chemo #1 I can’t say went off without a hitch! I was violently ill and by Chemo #2 had top of the line anti-nausea meds!! Herceptin was started at chemo #4 along with the standard chemo drugs and the placebo/pertuzamub. I would be on Herceptin for a year with the same three week cycle of administration as the six chemo treatments. I told myself and believed that I was the half that was getting the Pertuzamub!!! Positive attitude is everything right? Leg one of this journey was complete and I rang the bell of hope and felt as if I was slowly crossing one finish line!
During Chemo I may have lost my hair but, we also celebrated our 25th Wedding Anniversary. We sold our family home of 22 years in Pembroke and with more love and support built and moved into our dream home in Golden Lake. I met complete strangers willing to share their stories and show me more compassion and kindness than I could ever have imagined.
Radiation began Sept 11, 2013. I would have 25 treatments. I was supported by an army of friends and family either driving me daily to Ottawa or putting me up for the week in their homes! One condition of being in the trial study meant that all tests, treatments, etc., happen at the Ottawa General for the duration of the study.
My last radiation treatment…. Oct 16, 2013.
So, tonight when the sun goes down If I start to glow…..don’t panic! Ha ha, they hate when you say that!! And yes, again I rang that bell!!
Christmas came and went and we celebrated by moving into our home. But I was developing a nagging pain in my left hip that was causing movement and returning to work difficult. My Onocologist was following this with caution. April came and went and we were still investigating this painful hip! Reality of bone cancer was invading my thoughts as more MRI’s, CT scans and x-rays were ordered to rule out if the cancer had metastasized into my hip!! Finally after consultation with an orthopedic surgeon and several Radiologists, my oncologist called and said, good news there is no new cancer in your hip! It’s just arthritis! I said “What, 29-year-old can get arthritis???
I celebrated completing Herceptin by participating in the first Whitewater Relay for Life last June!! I felt like I had to give back!! I returned to work full time with a clean bill of health Oct 6, 2014!!! I had now been off for 20 months.
By Feb 2015 during my two-year check up, I asked my Oncologist…” hey,when are you going to say….I’m in remission?” He said, “ As long as you feel healthy and your tests continue to be normal….it’s all good!” He was right!! From where I have just been, it is all good! I believe having a positive attitude, faith and hope are essential in moving forward! I’m not special, but I am grateful!! I have learned so much on this journey. I understand what it’s like to walk in those shoes, and I have fought to get here!! I’m now a Gram of a beautiful little boy named Finnley! And my husband and I have a bucket list that we are actively checking off!
Although I am elated to be technically “cancer free”, I am still sensitive to those who are struggling or have lost their battle!
My journey to date would not have been as successful without the love and support of my husband, our kids, my siblings, especially my sisters, (even though they used to tell me I was adopted!) my parents, in-laws, extended family, friends and neighbours. I felt very privileged to experience such kindness and support whether it was food, drives, gift cards, phone calls, visits or a hug on a bad day!!
I need to give a shout out to the wonderful care we also received form the PRH, Dr. Graham, CCAC and OGH. I would be remiss if I didn’t give a special thank you to our own family physician, Dr. McPhearson! His compassion, dedication and genuine empathy for our family and this process went above and beyond!!! He made himself available to discuss any concerns about my treatment or just have a good cry! He has been our Physician for 25 years, an amazing human being!!
To all of you I thank you from the bottom of my heart!
I still have re-constructive surgery to complete, I try not to think about next week or next year –but only because I have the attention span of a squirrel, so one day at a time works for me!! Chemo brain – right??
But I do think about spending time with people who I love and make me laugh!!
Relay for Life needs the same support to be successful! Whether it’s to research new drugs, improve technology, stem cell treatment, donations, training volunteers or sustaining the valuable cancer societies that provide updated information, education, fundraising or just a kind voice at the end of the phone to walk us through a difficult time in our lives.
So, if this is your first Relay for Life, be prepared to laugh, cry, remember, create new friendships, celebrate, fight and hope!!!
So in closing, from my team to yours………………….Moooove over Cancer, we don’t need your Bull!!
Thank you!
