"I wish my story was like some of the others, with humorous anecdotes and filled with family love. To be honest though, I felt very much like I was on this journey by myself. My family was supportive and positive and with a nurse in the family, I was able to get small questions answered on the spot. I was numb for a long time though, and my focus was very inward. It was me and it was my reactions, my side effects that counted, not how others perceived them. I found very little funny for a very long time even if I did suck it up for outsiders and put on my happy face. I’m glad to be out of that place of self-absorption and back in the land of the truly happy now.
"My journey began with a routine mammogram on Oct. 29th, 2013. Things moved pretty quickly for a week or so, with a retest on the mammo, an appointment for a third mammo with ultrasound and the surprise biopsy on the same day. Then my first waiting period began as I was informed by phone nine days later that my biopsy results were in and I would have to see a surgeon on Nov 20th. My hubby, daughters (5), and son were as supportive as could be, but me being a bit contrary at the time, I rapidly got to the point where if one more person had told me ‘you’re going to be just fine,’ I think I would have screamed aloud. Having an ‘invisible’ disease was also tough on me. People kept saying, ‘cancer huh? Well, you look great.’
"I found Breastcancer.org before my lumpectomy and noticed several differences between the Canadian and US treatments. The first thing I noticed were the time disparities – I would have given anything to get my biopsy results in a day or two like some of my friends in the States.
"Things sped up again and I had the lumpectomy on Nov 28th, then time slowed as I waited for the results – my appointment to get my results wasn’t for 23 very long days and I worried for each one of them. Was it benign or not, were the lymph nodes clear or not, would they get good margins? Miscommunication resulted in me finding out 5 days early when I received my welcome kit to the GRRCC (Grand River Regional Cancer Centre) in the mail. I still wasn’t sure what that meant though regarding my diagnosis. My poor mother was beside herself and told me later that she wanted to call someone, anyone, to give them a piece of her mind for putting me through this discovery without medical support. My husband and I were in shock, numb, scared, and just trying to stay positive.
"December 19th, I was informed that they got it all with 6mm clear margins and 0 of 7 lymph nodes. I would have to see an RO (radiation oncologist) and MO (medical oncologist) for further treatment and again things sped up. I met my RO on New Year’s Eve where I found out I would have to have radiation, then my MO on January 7th and things came to a screeching halt. Her first question to me was, ‘Why did you only have 1 of the 4 lumps removed?’. I’m sure my face was white as I asked, ‘What 4 lumps?’ I was then the subject of a medical investigation and unable to participate in any treatment until the matter of 1 vs. 4 was answered. Good news, though, as it allowed my DH (dear husband) and I to go on a breast-cancer-free vacation in the Caribbean for a week. I really needed that and would recommend to anyone to take a cancer-free vacation if you can possibly manage it.
"Upon our return, it had all been resolved and now we had another delay. My MO wanted an oncotype [test] (since I was ER/PR+ and HER2-) and here in Canada the results take 3 weeks. Many don’t qualify for an oncotype [test] because of their hormonal makeup. They actually had to send my 15 little slices of me to California for testing as we don’t have the facilities here. Finally, it was back: I was a 28, which is moderate/high but with a type of cancer that reacted well to radiation alone and only gave me a 2.5% chance of reduced recurrence with chemo. For me, the choice was a no-brainer. No chemo. But yes to Tamoxifen, which brings up a small side story.
"I had an appointment with my OB/GYN in the midst of all of this. One of the ironies of life is that I had been on HT (hormone therapy) for 4 years before being diagnosed. The purpose of it was to up my estrogen count and we all know what breast cancer likes to bind to. Needless to say, he took me off HT immediately and I began Tamoxifen one week later. That drug works in opposition to the HT, blocking estrogen so that breast cancer has nothing to bind to. I am sure there are other ladies out there who have been on this therapy and all I can say is to be sure to talk this out thoroughly with your medical team as it had repercussions for me later. There was another difference for me – the medical team! My team consisted of an RO whom I saw monthly and my MO who I never saw again after treatment had been decided. Everyone else changed on a daily basis. My radiation was done under the Canadian Protocol, which is 20 treatments (16 whole breast and 4 boosts) done on weekdays. Four weeks of rads and if I saw the same tech three times it was unusual. I would have liked to have had a ‘team’ but because our insurance is different than in the States, we get what we are given. This being said, I do not feel that I was shortchanged in anyway other than bedside manner as it is all rather clinical. In my opinion, our coverage is better because everyone is entitled to medical treatment whether they are rich or poor and whether they have other insurance or not.
"Rads, while the position was uncomfortable for me, weren’t that bad. I arranged to have them last appointment in the day, which sometimes meant I had to wait but reduced my time away from work. The worst thing about rads was the cumulative fatigue and I had to take the last 6 days off work due to my lack of focus. I was so tired all the time.
"I also was working with the heredity therapist, since my mom also has breast cancer and my uncle has prostate cancer. It is, however, very tough to get a BRCA test here. You must hit certain scores to do so and I didn’t. If I wanted to get it anyway, OHIP (Ontario Health Insurance Plan) would not cover it and it is approximately $3,600.00 to get it done. My daughters, on the other hand, were slightly more at risk than I due to the two generations of cancer in their history. Still not enough to warrant OHIP paying for the test, but enough to ensure yearly MRIs. Let me say at this point that at no time during these procedures did I have to pay anything. What wasn’t covered by OHIP was covered by my work insurance (thank goodness) which I pay $27.10 per month for.
"I was also involved with dietitians, the WELL-FIT program and the LivingWell program. The dietitian’s advice was to follow the Canada Food Guide as closely as possible and not to increase my intake of soy or flax. They explained that the new advice to do so was based on the China study but that people there had been eating those items since birth. We have not, and our bodies aren’t used to it, so if you have eaten it all along, go ahead, but if you haven’t, then don’t start now. I have followed this advice.
"The WELL-FIT program was 12 weeks of twice-weekly exercising done with a personal trainer and a room full of other people who had been diagnosed with one form or another. It was this program that started to enable me to begin re-entering the land of the happy people. It was such a relief to spend time with others who were going through what I was experiencing. I didn’t have to try to explain my feelings, concerns, and fears because they already knew. LivingWell is a 6 week program to help people live with the side effects of Tamoxifen. Although we did talk about how to manage, high on their list is walking as often and as much as is possible as exercise will relieve some of the side effects. Again, it was great to talk to women who knew what I was going through.
"All of these programs were covered by OHIP. In addition, we have a ton of other programs available: babysitting and transportation services so that women can go to their appointments; yoga & Zumba classes for exercise; hair & manicure appointments; ‘dealing with’ classes for children, parents & caregivers of people with cancer; houses for families of patients from out of town to stay in while treatment is in progress. I was very impressed with the range of support provided. I said earlier that I had repercussions from my HT before diagnosis. Estrogen helps to lubricate your joints, so going from extra estrogen to estrogen-blockers resulted in some very serious joint pain. I get to revisit the decision for Tamoxifen on Sept 25th as apparently even my MO didn’t think it would work for me. Why did she still prescribe it? Because it is still the best thing for me and she hoped I would be one of those ladies that it did work for. You don’t know if you don’t try!
"I am almost one year from diagnosis now and looking forward to my first anniversary, which I am counting from my day of surgery. I am exercising and walking daily. I am eating well and have stopped drinking (boooo!). Smoking is next on my list because I don’t think I can do that in moderation. I appreciate my family more than ever and find myself stopping often to listen to my son and grandson wrestling in the living room, or my daughters arguing about recipes and weight, or the quiet of the golf course when my hubby and I are on the back 9. I am storing happy memories and feel better about myself and much more positive about my future. I have also decided that a ‘bucket list’ is a terrible thing to have as it implies a bunch of activities that you would like to do but haven’t gotten around to. I am spending my children’s inheritance, with their blessing, and have now been to Italy and on a hot air balloon ride. Strike two things off. I’m going to keep striking things off until I have none left, then I’m going to keep going so that I don’t build myself a new one! Ziplining and Hawaii are next. I’m working my way up to roller coasters.
"I think I couldn’t have done it without Breastcancer.org. Different forums have helped me at different times in this journey. I even started 100 Days of Gratitude in order to try to keep my own focus on the positive things happening in my life. I’m pleased if it has helped others too.
"I know I couldn’t have done it without the patience and love of my husband, children and mom."
--RedReading, Ontario, Canada