Tuesday, March 11, 2014, started out like any other day, and I thought it would finish that way as well. I was lying in bed watching TV, when I felt a lump in my right breast-it felt exactly like and was approximately the same size as a marble. I wasn't overly worried and figured it would turn out to be nothing. I woke up the next morning, went to work, and called my doctor's office for an appointment to get it checked out. When I told the receptionist what the appointment was for, she asked if I could come in that afternoon. I was surprised at the urgency, but figured I'd get it over with and checked for ease of mind. My family doctor felt the lump and said that 8 out of 10 times they turn out to be nothing. But, since I didn't know my father's medical background, and he had passed away from pancreatic cancer 2 years prior, he was going to send me for a precautionary mammogram and ultrasound.
I'm a 43-year-old, single mother of three amazing boys, who were 13, 11, and 9 years at the time. I have a solid family, great friends, a job I love, and three healthy children. Even though I definitely had my share of bumps along the way, I couldn't complain. One of those bumps was definitely when I lost my father in September of 2012 to pancreatic cancer. It impacted me immensely. We had a relationship that many would envy; he was the most amazing man, and I loved him so much. Watching him be diagnosed and pass so rapidly was heartbreaking. It seemed impossible that such a healthy man could be taken so quickly by cancer-it was a living proof that life is a gift and nothing is more valuable (Figure 1).
I got my appointment for my mammogram and ultrasound on Friday, March 21, and my girlfriend, Karen, insisted she come with me. I was more nervous and anxious than I thought I would be, so I was glad to have her there for support and to distract me through the waiting. I had the mammogram first and then went for my ultrasound. I could see the screen, and every time the technician went over the lump it looked like a big, black, solid mass. I had, of course, erroneously, googled a bunch of different things before going. The reality of this black mass with no white specks had begun to sink in. The technician was outlining the mass with a click here and a click there. She then went up into my right armpit and I could see her clicking and outlining some of my lymph nodes. I felt a knot develop in the pit of my stomach. I knew that couldn't be good, and felt a tear run down my cheek. As we left the hospital, I was told I would have to wait until Monday for my doctor to receive the results. I tried to keep busy and convinced myself that the results would be fine. I kept telling myself that worrying wouldn't change anything.
On the Monday morning around 11 a.m. my cell phone rang, the screen announcing it was my family doctor. He disclosed that the results had come back revealing that the mass was suspicious. This meant a biopsy was needed to determine what the mass actually was. I asked him about my lymph nodes, as I had noticed the technician outlining something in my armpit. He confirmed that one of my lymph nodes was enlarged, but that lymph nodes could be enlarged for many reasons. He told me that I would need to see a surgeon and that it would take approximately 2 weeks for my next appointment. I knew that appointment would only be a consult, and the biopsy would have to be scheduled after that... 2 weeks was beginning to feel like 2 months. Now I was numb. I think deep down, at that moment, I knew it was breast cancer, but I continued to tell myself that I was jumping to the worst-case scenario.
I hung up and texted another one of my dear friends, who's a pharmacist in oncology at a local hospital. I wanted to talk to her and have her reassure me. She called me right away. As I told her, sitting in my office at work, I started to cry. All I could think of was my children, and that they could not lose me, nor could I lose my chance to be there for them as they grow up. Allison was worried for me too. She told me that she was going to see if there was anything she could do to speed up the process. Within 20 minutes, she had called me back and I was in a cab on my way to the hospital to have a biopsy of the mass.
I met Dr. Nadine Norman, and she was wonderful. She explained the process and was prepared to do the biopsy right away. When I asked her thoughts on the look of the sample, she said it didn't look good, but also that she had been wrong before. After a promise to rush the results, I was told they'd be in by Thursday, March 27, the date I would find out if I had breast cancer.
Over the next 4 days my gut instinct screamed, "You have breast cancer, and you better be prepared to hear that." Then I'd tell myself I was worrying for nothing. One of my catch phrases is "85% of things you worry about never come to fruition." I tried to remain positive and continued to put one foot in front of the other. I had three tireless children with tireless schedules, and life had to continue.
Eventually Thursday, March 27 came. Karen drove me to the hospital and Allison met me at Dr. Norman's office. Dr. Norman confirmed that I did have breast cancer. After that it was all a blur, I couldn't retain a lot of what she said. Just that it was cancer-a Grade 3 Stage 2 invasive ductal carcinoma. She explained that I would need a lumpectomy, and noting the inflamed lymph node, I would undergo tests for metastasis. I was in shock. I was anxious. I was scared. But, most importantly, I was strong.
At this moment, I just wanted to be home... to be alone. My boys were with their Dad, and that gave me the space I needed to think. How was I going to tell them? How was I going to tell my family? My family that had just lost my Dad not even 2 years prior. I was able to settle on one thing though: that I was going to be strong. Was there any other option?
I told each of my boys individually; I knew they would all look to me, and watch how I handled it. Each one handled it a different way, but they were all scared. This was an obstacle in our lives, but one I had hoped would strengthen us, and them. Plus, I was going to have the opportunity to be home with my boys for the next 6 or 7 months, and I couldn't see a down side to that.
A magnetic resonance imaging (MRI) and computed tomographic (CT) scan were scheduled along with a lumpectomy for April 9, 2014. Going through these tests brought on several mixed emotions. I thought of my father and how he must have felt during his diagnosis. I thought about that enlarged lymph node, and what that could mean. Then there was the waiting, the constant waiting for results; it caused more anxiety than the results themselves. And as I waited, my feelings changed from "please don't let it be breast cancer" to "please only let it be breast cancer."
I finally got the results from my MRI and CT scans. My CT scan showed that my tumor was 2.4 cm, and that one of my lymph nodes was affected. My MRI results showed that the tumor was 2.6 cm, and that two of my lymph nodes had been affected. Dr. Norman explained that they would remove the tumor with generous margins, along with the first 5 lymph nodes. If it showed that the cancer had reached the fifth lymph node, they would remove more of them until they found no more evidence of the cancer. Upon discussing treatment, she decided that because of the size of the tumor, and the fact that it had entered my lymphatic system, I would require chemotherapy and radiation. She referred me to an oncologist, Dr. Orit Freedman. Even in the 3-week span I noticed a slight enlargement of the lump. I felt that lump every day. And I couldn't wait until it was gone.
On the day of surgery my brother and sister-in-law came to stay with me and the boys. The surgery went well and I was home that day. My follow-up appointment was scheduled for 2 weeks later, when I would get the results of the pathology and have Dr. Norman look at the surgery site. I was surprised at what a great job Dr. Norman had done removing the tumor, while leaving minimal evidence of the surgery. I could still wear a bathing suit and no one would notice that anything had changed! I felt strong, positive, and ready to deal with whatever treatment looked like. Including losing my hair-my long, beautiful blonde hair.
I went to get my results, and again Allison came with me. Dr. Norman explained that they had removed the tumor, along with margins of approximately 7 cm x 7 cm and 5 cm of surface skin. The margins were clean. She then informed me that they had removed four lymph nodes, and pathology confirmed that the cancer had not entered any. This was the most amazing news! I felt so positive in that moment. That's when she told me the "but"--I had triple negative breast cancer. The one cancer they know very little about. Except that it's extremely aggressive and, within the first 3 years, the recurrence rate is much higher than any other type of breast cancer. All I could remember was that I had been told that breast cancer was 93% curable if caught early, except triple negative. Less than 15% of breast cancers are diagnosed triple negative. She also let me know that because I had triple negative breast cancer, and I was so young, I should go for genetic testing. I was trying so hard to focus on the positives. It had not spread to my lymph nodes and my margins were clear. These were good things... I just had to take it 1 day at a time.
Allison, and her unwavering support, came with me to meet my oncologist, Dr. Freedman, who explained what triple negative breast cancer meant. It meant that the cancer I had didn't respond to hormones. That it didn't require anything specific to grow. That it just grows. And grows very rapidly. Since I was young and strong, she wanted to treat me very aggressively. She told me that it often responded extremely well to chemotherapy, and said she wanted me to have four treatments of dose dense AC-known as the red devil-every 2 weeks. If I was able to handle those treatments, we would then continue onto paclitaxel every 2 weeks for the last four treatments. She explained that if I was unable to handle the four paclitaxel treatments every 2 weeks, we could switch to once a week for 12 weeks, but every 2 weeks was ideal. In that moment, I made my mind up to do the four treatments every 2 weeks, no matter what.
She went on to tell me the other aspects of this kind of chemo regimen. The hair loss would begin in approximately 10 days. I would be taking numerous other drugs to help deal with the nausea. I would need a peripherally inserted central catheter (PICC) inserted, because the chemo could burn out my veins. The steroids, the weight gain, the pain--how each round was different in how long it would take to feel the effects.
I wanted to look into getting a wig before losing my hair, in hopes that I would be able to look in the mirror and see a resemblance of myself. I was told to go to a shop in Yorkville, which the majority of medical staff had heard of, so booked an appointment for the following Thursday. I asked several questions over the phone and was beyond shocked to learn that the wigs were going to cost approximately $3,000, because the length and color. Then, one of my doctors suggested I try Paula's Wigs on Bathurst as well. I decided to look at more than one place and was able to get an appointment for the Wednesday. People always say, "Its only hair, it will grow back." But it's so much more than that... it's what makes you, you when you look in the mirror every morning. It's confidence.
I went into Paula's and met with Elizabeth. She was wonderful! She told me that they would be able to make something similar to my own hair. I tried a few wigs on to get the feel, while she explained how they fit. I could wear them over my own hair as it started to grow back; many women wear them as hair coverings. You couldn't tell by looking at them, but I learned that all the women who work there are wig wearers. She explained they make all their own wigs on the premises, so should there ever be a problem, I could bring the wig directly to them and they could fix it right there. I told Elizabeth that I had booked an appointment the next day with another provider, and she encouraged me to go see them, as it is such a big purchase. She then took pictures of me, my hair, and how I styled it. I left with such a feeling of relief; although I was going to lose my hair, I could still look like and have the confidence to be me.
The next day, Angie and I went to the shop in Yorkville. I felt better heading into this appointment because I now knew what to expect. I couldn't have been more wrong. We went in and met the owner of the salon, which was buzzing with activity. I sat in his chair and he started showing me wigs that looked far too shiny, and weren't near the length of my own hair. He told me I wouldn't have the true feel until I lost my hair, but the wigs fit too tight and the bangs came flat on my forehead. He went on to explain that his wigs were synthetic and came only in certain lengths. Plus, if I had any problems they would be sending the wig out for repair. Therefore, I would have to go without the wig until the repair was complete, which could take 2 weeks. I felt sick to my stomach-I had a wig on meant for Halloween. I started to ask about lace that could be put at the front of a wig so that I could wear my hair off of my face. He advised that it would look terrible, and that you would be able to see it. It wouldn't look real. He made me so uncomfortable, and the more questions I asked the worse he got. He contradicted everything that I had been told the day before. After pressuring me to select a wig, I told him I needed to take some time, as I had been to another wig store the day prior. He then became even ruder, telling me I was going to be very disappointed and what I had been told was not possible. He then took a step back and suggested that I go to the other salon if I had gone there for an estimate as well. Angie and I were both beyond shocked. He was cold, aggressive, and seemed offended that I had been somewhere else. It also had me in knots that I might not get what Paula's had said they could do. I called Elizabeth the next day and she assured me I would be happy. So, I ordered the wig and prayed for the best. With the total coming to $4,000 plus tax, and the fact that I was off work on long-term disability leave, I was so grateful my mom had offered to pay (Figure 2).
So, I had most of the hair loss situation figured out, but I was also going to lose my eyebrows and eyelashes. I just didn't want to "look" like I had cancer. Whenever I looked at someone with no hair and no eyebrows, it screamed, "I have cancer!!" Through my diagnosis, I learned that everyone copes differently, and it is everyone's right to do exactly what he or she wants and needs to, in order to get through it. For my boys and me, I wanted to continue to look somewhat like me. I heard of the "Look Good Feel Good" program and was told that they help you with makeup and skin care. I registered for the program and went down to Princess Margaret for one of their afternoon sessions. The sessions are offered in many different locations, and at different times of the day. I wanted to get there before I started my chemotherapy, in case I wasn't well enough to get there during. When I got there, there were eight of us in total, and we were given a package full of products. It included many different makeup and skin care products, which were for whatever skin type, shade, and coloring you needed. The makeup artists, skin care specialists, and other professionals were volunteers; they discussed all the products, how to use them, and how to apply them once hair loss begins. They answered all of our questions and were a really great, kind group of people-the program is a must for anyone who is going through the process. Some of the women I met there were much worse off than I: younger, different types of cancer, longer treatment. I remember leaving there feeling that, although I had been diagnosed with cancer, things can always be worse. I was definitely still smiling and had some great new products to try.
I often sit and think about this time now, and some of it really is a blur. I was doing exactly what I was supposed to, and when I was supposed to, but it all felt so unreal. I figured my boys would handle this exactly how I did. So I was going to keep moving forward with strength and dignity and find the silver lining during every part of this journey. I never let myself believe anything different. This was a bump in the road, a major bump, but still only a bump. Make no mistake, I cried, and hard at times. I would let myself cry when I was in my shower, where my boys couldn't see me. Not because I didn't want them to think it wasn't okay to cry, because they did. I just knew that if they saw me cry, it would be scary for them. They needed my strength. When they would cry, and they did at times, I would hold them and tell them it was all going to be fine, because I believed that, and I needed them to believe that too. So I cried only when I was in my shower. Then I would stop, dry off, and get on with whatever I was doing. It helped.
A friend and fellow hockey mom had been diagnosed with breast cancer just 2 weeks before me; she had her breast removed but didn't require any further treatment. Now her and some other friends were heading to Punta Cana. I decided at the last minute to join them and escape with my boys for a week. I thought it would do us some good to get away and have a fantastic time before my treatment started. I didn't tell the boys until the morning we were leaving. We had an amazing time! The spontaneity of the whole thing made it that much better, and something I would not have normally been able to do with my work schedule. We still talk about how great that trip was.
As soon as we got home, I had my PICC put in. The treatment process was starting. I thought of my Dad and how he must have felt going through all of this. You can hear about it, you can read about it, but you can never understand it until you experience it. It made me so sad that he had had to go through this too, but had also been told there was no cure. I didn't care what it took; I was going to make sure I did everything I could to get all traces of cancer out of my body.
I picked up my wig right before my first treatment, and it was amazing! I tried it on with Elizabeth's help, and the stylist cut it to look like my own hair. I left feeling so much better-I would be able to be me, even when I lost my hair. I was also given what was called a drop wig as an extra; it's a wig with only lace on top and hair starting just above the ears. It's great for not being near as hot when putting on a hat if I wanted to go walking, or even when I needed to throw something on quickly. They were incredible people, and I encourage anyone going through this process to go to Paula's. I have recommended it to so many people and they have come away with amazing wigs.
I went for my first chemo treatment, which was always on Tuesdays, and was so shocked at the incredible number of people in the waiting room. We were all waiting for our chance at 1 of the 35 chairs in the clinic, which surprisingly only took about 20 min. When my name was called, the nurse hooked up the first of two syringes to my PICC and slowly administered them by hand. It really gave me a chance to get to chat with them. The nurses at Scarborough General in the chemo clinic were amazing! I can't imagine working in those clinics with the diagnosis people have, and maintaining an amazing attitude. They run around like crazy and often work without breaks; all while making you feel like every time you're there, they're truly happy to see you. I can't say enough about them and the fact that I actually looked forward to seeing them every 2 weeks (Figure 3).
I left my first treatment feeling no different and completely fine. My mother had come to stay with us in case I was unable to look after my boys. I felt tired on the Tuesday night and slightly unwell, but nothing too serious. Wednesday came and I felt the same. I chose to give myself the dose of Neulasta (pegfilgrastim), which is a needle given 24 hours after every chemo treatment, to help increase the white blood cell count. I started to experience the metal taste in my mouth, caused by the chemo, which made food taste not so great, but overall it wasn't too bad. Thursdays were always when my boys went to their Dad's for the weekend. Thursday night the symptoms set in. The nausea was unbearable; I felt like I might be sick 24 hours a day, and if that wasn't enough, I was exhausted and light headed. I had many different antinauseants, which helped a bit, but I was never too far from a bathroom or bucket. It was like the worst hangover I had ever had, for 7 days straight. Then I'd start to slowly feel better before the next treatment.
My hair started to come out right around the seventh day... right on schedule. Not in clumps, but everywhere! Being so long, it was on everything. It then started to look thin and limp. I called my hairdresser, who is also a dear friend, and asked her if she would shave it-the time had come. She told me to come in that night after 9 o'clock, once the shop was closed and we could have some privacy. I drove to Erin Melinda Hair Studio with my wig in tow and cried all the way. Once I got there, I told myself to stop and embrace it. I was so fortunate to be able to have the wig that I had, and I would get through this. Erin shaved my hair to a brush cut, put my wig on, and cut it again so that it looked exactly like me... there really was no other option. She highlighted it a bit more and cut it into exactly the same cut I had. It looked so much like my own hair. I came home to my sister-in-law and was here to help with the boys. They were all so shocked at how good my wig looked. I took it off so they could see what I looked like, once my youngest kept asking. When my boys went to bed that night, and each one cried as I tucked them in. To them, I now "looked" like I had cancer and that scared them. They didn't want to see me without my wig, so I wore it whenever they were home.
I had also started to put on weight. I looked swollen and wasn't fitting into any of my clothes. It certainly wasn't overeating that was causing it, but the drugs to counteract the nausea. Thank goodness for maxi dresses is all I can say! I didn't lose my eyebrows or eyelashes during my AC treatment, or the hair on my arms. But, my underarm and leg hair were gone... so far the hair loss-minus the hair on my head-seemed to be working in my favor!
My family would often come to stay with me and help me out on the Sunday nights when my boys came home from their Dad's. Thursday night until the Sunday was so bad I didn't want anyone there, I wanted to stay in my bed and fall in and out of sleep. I did eat, but not a lot. I was also in forced menopause due to the chemotherapy and was having terrible hot flashes. I didn't want to feel like I had to get up to talk to anyone during these days.
It wasn't the greatest experience seeing yourself 25 lb heavier and bald. I did learn that I do have a perfectly round head though, something not everyone can say. Sometimes, I would look in the mirror and wonder how this happened. I had always taken such good care of myself. I'm a runner, I eat well, I don't smoke, I enjoy a few drinks now and again, but certainly nothing excessive. I couldn't get through those treatments fast enough, each one being worse than the last. I knew the next round of four treatments was pain inducing, but I would take the pain over the nausea any day.
I had been asked to speak to a few women who were struggling with the whole process... the hair loss, the chemo, the weight gain. It felt really good about to be able to share my experience, and although it was definitely an extremely tough process, it was necessary. Having a positive attitude and surrounding yourself with an excellent support system make all the difference in the world. I consider myself so fortunate to have the family I have, and the amazing group of friends I have in my life. If there was any way I could help someone else, or provide even a bit of the support I had been shown, I wanted to help. It gave new meaning to paying it forward.
I met with my radiation oncologist, who said that I should do 36 days of radiation when my chemotherapy was complete. He explained the side effects: how it can affect your hair; the burns on the breast, which is worse if you're bigger breasted, and I was; the changes to your underlying ribs and lungs; and the small second malignancy risk. He also stated that should I need the mastectomy, and it was done within 4-5 months, I would not need the radiation if it was also determined that I did not have any lymphovascular invasion. He looked into this further and determined that I didn't, in fact, have lymphovascular invasion. Another piece of good news to hold onto!
I've never been one to sit still for too long and always have things that need to be done. However, during this time, I accepted what I was going through and just took it 1 day at a time, at whatever pace I was able to manage. I learned to accept help, which was a huge step for me, but I needed it at times. I also found it was interesting to see the people who really stepped up to help. It was surprising to see that it wasn't always the people you expected, and that someone you thought would be right there, wasn't there at all.
So many people offered to help. Karen, her daughter Sierra, and husband Hugh took me to chemo treatments and were with me every step of the way. They made me laugh during the process and made themselves available to drive me to and from appointments; they have always been like a second family to me. Friends brought prepared meals. Two of my boys play hockey, and my hockey families were excellent, helping with driving wherever they could. My sister-in-law and brother were a godsend with my kids and helping where they could. My mom was a constant support and there to listen whenever I needed an ear.
I inevitably started my second type of chemo: dose dense paclitaxel. Dr. Freedman gave me a prescription for Percocet (acetaminophen and oxycodone), which I was sure I wouldn't need, because I have an extremely high pain tolerance. The treatment took approximately 4 hr, and I had to have someone drive me to and from the clinic. When I got to the clinic I was given three intravenous antihistamines prior the treatment, because many allergic reactions are common with this type of chemo. I couldn't keep my eyes open once the antihistamines were dispensed, and slept through the entire treatment. During the following treatments, I often had to have my arm wrapped in a warm towel because of the pain. My PICC became blocked after my second treatment and had to be removed. Fortunately, it wasn't necessary for the paclitaxel treatments as they weren't as toxic to my veins. That was a huge relief-I was now able to shower without having to wrap my arm and could swim if I wanted too!
The paclitaxel caused pain in my joints. I only experienced it in my hips and lower body, but my knees were terrible. I could feel it getting worse the day after, and it was terrible at night. It felt like growing pains... times 10. I ended up having to use the Percocet at night--I needed something to help me get to sleep. But I didn't care about the pain-it was a cake-walk compared to the nausea from the AC treatment. I only took the Percocet for 3 or 4 days during the 2 weeks in between treatments. Although I had always been a great sleeper and loved my sleep, I began to experience sleeplessness. I was told it wasn't a side effect of the treatment, but in talking with other patients undergoing the same treatment, every one of us experienced it. It's not that I had trouble falling asleep, but couldn't stay asleep; I would often sleep for 2 or 3 hr over a 48-hr period. It was so frustrating being so desperately tired, but unable to sleep. I finally gave in and got my doctor to prescribe me a sleep aid.
I went for genetic counseling at Lakeridge Health in Oshawa, where we reviewed my family history. There's no breast cancer on my mother's side, and my father was adopted, so his family's history is unknown. He did, however, have pancreatic cancer, which can be linked to the BRACA gene in men. Everyone kept saying, "thank goodness you don't have girls," but there was no comfort in this statement. I had done some reading, and in boys it can cause pancreatic, prostate, and breast cancer. Much lower rates than if they were girls, but nevertheless, the risk was there. Once the testing was done, I had to wait 6-7 weeks for the results. During those weeks, I did a lot of thinking and made the decision that regardless of the results, I was opting for a prophylactic bilateral mastectomy.
One of the worst things about cancer and its testing is the waiting. The waiting is relentless and never ending. I watched my children worry, my family worry, my friends worry, and myself worry. I didn't ever want to go through or put any of them through this again. I have to go for mammograms every 6 months and wait, and go back if they see something, and god forbid it is something. But, my cancer had grown so quickly and I didn't want to take any chances, or have to go through this treatment again.
I met with the oncologist at Lakeridge Health and she explained my results in full, but the end result was that I was not a BRACA carrier, and my cancer was not genetic. I was so overwhelmed with relief. Another piece of great news!
I relayed my decision to Dr. Freedman and I was referred to Dr. Semple and Dr. Escalon at Women's College Hospital. I went for a consult before my last treatment and felt very comfortable with both of them. I'll never forget when Dr. Escalon told me he thought I was making the right decision. Even though I had never met him before, it made me feel so liberated. While I was there for my consult appointment, one of the nurses told me I should attend BRA day-Breast Reconstruction Awareness day. It was being held at St. Michael's College, and there would be a group of doctors speaking about all the different options available for reconstruction. My girlfriend who was also looking into reconstruction, two other women, and I went down for the presentation. For anyone who is even slightly considering reconstruction or has reservations about it, I would encourage you to attend this night. It's held in October and is so informative. It really helped me understand my options in regard to the process, the different kind of reconstructions, and nipple reconstruction or three-(3D) tattooing that's available.
Willow Breast & Hereditary Cancer Support had a "show and tell" lounge after the seminar; only women were allowed in this room. In the room were several women who were topless from the waist up, who had all had mastectomies and gone through reconstructions of some sort. Some had nipple sparing, nipple reconstruction, or 3D nipple tattooing. It enlightened me on what to expect from the reconstruction process, the scars, and the stories. Again, something that I cannot speak highly enough about and would recommend to anyone considering the process of reconstruction. I left there with a better understanding of what my body would look like, and that it wouldn't be perfect, but I would have my shape back.
I finished my chemotherapy in September, and it was bitter sweet. Although I was glad to be done, it was also scary. I couldn't wait to start feeling better, but I also missed feeling horrible. I struggled with the fact that I was no longer receiving any type of drug treatment to fight the cancer. The hope is that if anything had gotten away microscopically, the chemotherapy would kill it, treating your body as a whole. That's the difference with triple negative breast cancer: there's no hormone to be taken when you're done, so there's really no follow-up unless there's a problem. I was scared; at least when I felt terrible, I knew the chemo was working. I knew I was fighting. It took me some time to be okay with feeling okay.
During this whole process, I had been seeing a psychologist so I could talk about the different things I was feeling and dealing with. It helped me keep things in perspective and gave me an outlet to talk about things when I wasn't sure how to talk about them. Although my breasts and long blonde hair definitely did not define who I was, they were a part of me-a big part of me. It took me time to accept these changes, and that I could not change them at that time.
I went for a routine follow-up 6 weeks after I finished my treatment, where I saw Dr. Freedman and had the usual blood work done. Later that day I received a call from Dr. Freedman, letting me know that my liver enzymes were elevated and that she wanted me to go for an ultrasound of my liver. To say I was scared was a huge understatement. I was terrified. I could only think that my breast cancer had metastasized. I prayed and cried hard. I didn't tell anyone but Karen and Allison... I couldn't. I could barely say it out loud.
I drove to the hospital the next day and went for the ultrasound. The results came quickly. They showed that my liver was enlarged, and there was a spot on it. Then it was all a blur... again. They thought the spot was a hemangioma but wanted to be sure. I was sent for an MRI, and again, waited for the results. Now one line was being chanted in my head, "if it has to be cancer, please let it just be liver cancer, not metastasized breast cancer." It was amazing how much my thinking had changed.
The results said that it was a benign hemangioma and had been there prior to my diagnosis in March 2014. The radiologist had gone back to my original CT scan and found that it was already there and had not changed during my treatment, which was such an amazing sign. I went back 3 months later for another ultrasound that confirmed everything was remaining unchanged. I will have to repeat this again in August 2015, just as a precaution. Apparently this rise in liver enzymes can happen as a result of the chemo, but often to less than 1% of people. To put it into perspective, I had poisoned my body for 5 months, and there had to be some repercussions to that.
In December, I drove to Peterborough to Cosmetic Transformations for a consult with Kyla Gutsche. She had spoken at BRA day and does 3D nipple tattooing. Her work was incredible, as was Kyla and her attitude. She was so positive, empathetic, and an amazing artist. I left my consult feeling fantastic, and with an appointment to receive my first ever set of tattoos on December 17, 2015.
I took some time to recover from the chemo, as required, but Dr. Semple and Dr. Escalon made time to get me into have my mastectomy within the 5-month time frame. Meaning I didn't have to have any radiation! For that, I am so grateful. On January 6, 2015, I underwent a bilateral mastectomy and simultaneous reconstruction; expanders were put in once all my breast tissue had been removed. I had chosen not to have nipple sparing surgery since I was informed that by saving my nipples I had an 11% chance of recurrence. I wasn't leaving anything to chance. If I was going to this length, I might as well remove them also, especially knowing what Kyla could do for me.
Seeing my breasts for the first time after the mastectomy was definitely a shock. Even though you know what's happening, I don't think you're ever fully prepared for it. After the first month, I started seeing Dr. Semple's nurse, Helen, every 2 weeks to have my expanders filled. That is another amazing process. Every 2 weeks I had 100 ml of saline put into each of my expanders. I often giggled at how quickly my breasts were growing back into breasts. They started to fill out my shirts. I was able to wear a bathing suit. I felt feminine and very much like a woman again. The process was sometimes painful for a day or 2 after they're filled and stretched, but once they settle a bit they look great. Once my filling had been completed, I had just over 900 cc's put into each breast. Dr. Semple was a very kind man, who was also very empathetic to the process I was going through, and my feelings about my body along the way. My next surgery was to have the expanders removed and implants put in. So far, I have gone through that surgery but I will need at least one more to hopefully complete the process.
It's been just over a year from my diagnosis, and my hair is starting to grow back, I'm starting to have a bit more energy, and feel more like myself as the days go by. There are times that I feel discouraged that I haven't been able to get all the weight off, that my hair isn't growing fast enough, that I still need an afternoon nap, that I experience sleepless nights or don't have near the endurance I had before all of this started. But, I have realized that it's okay to feel that way. I try to look back and recognize that although slow, I am getting better. I can do more now than I was able to do 3 months ago... baby steps. I'm moving forward and that's always the right direction.
So much has happened in the last year. I've had 5 months of chemotherapy, three surgeries so far, and I'm still standing, I'm smiling, and I'm strong. I feel a bit like a walking cliche at times, but life truly is a gift and I will never take it for granted again. I still have another surgery in my future, and further recovery, but I have learned so much about myself during this time. I now have such a different perspective of life. There is positive in everything. Sometimes you just have to look for it, and hang onto it. I have another 2 years to get through with a high rate of recurrence, but I truly believe I am going to be just fine. Plus, I've been able to be home with my boys and watch them grow and mature. Now, I'm hoping to pay it forward for all the people and places that have been so amazing during my journey.
People often say "you only live once." This couldn't be more wrong, you only die once, you live every day. Embrace it!