Sonja

December 2011 - I am running in the cold with my best friend for a party. Why are we running? It’s cold - really cold! We are headed to a Christmas party, which my bestie has begged that I attend with her. The girl holding the party went to high school with her so she is unsure of who will be there – please come! Of course I will be there. Something is wrong though, I can feel it in my side as I am running. My side is hurting and it’s not a cramp, it’s a different hurt – but I am running so it must be that. I dismiss it – it is Friday night.

It’s now Saturday night. I’m at my boyfriends, and we are invited to our friends for a Christmas get together. We are in the kitchen figuring out what to bring to their place. My boyfriend has moved back into the living room and is on the computer. I felt a pain in my side, and discovered the lump. I can remember everything about that moment: the lighting, and the feeling of wondering what it could possibly be? I knew immediately that this was something that could not be ignored. My boyfriend finally asks what I’m doing. I walk over to him and he feels it - how can we figure out what this is? He is on the computer looking up lumps, and I am looking up a phone number for the 24HR line where you can phone with your health questions. The nurse on the phone says to go to my family physician within two days. She cannot speculate, but a doctor will know. When we arrive at my friend’s I get her to look at it, and she thinks it’s a hernia. I am distracted and feel her concern; there is nothing I can do until I go see my doctor – next week.

On Monday morning I call and set up the doctor’s appointment for the following day. I go there and my boyfriend comes with me. My doctor asks why I did not show him the lump at my appointment with him on the Friday. I did not know of the lump on that day, I only felt it that night running to the party. After some tests, the doctor says he will call me back next week, after doing more investigating. He sets up an appointment for a CT scan. The next week I was leaving for BC so I decided to get a cell phone, so that I didn’t miss any important calls. I went for the CT scan and then was off to BC. I got to Mom’s; we are both very worried, and it is a distracted visit with so many things going through my mind. My doctor finally calls saying he thinks it might be a desmoid tumor, but the plastic surgeon will remove it. All will be well; he has set up an appointment. Mom and I race to the computer. Desmoid tumors look removable, and we feel things will be fine. Whew.

Back to Winnipeg I fly. My appointment with the plastic surgeon takes a while as they are in high demand. I’d say it was mid-January before I go to the appointment. This appointment is the first indicator that there may be something seriously wrong. The plastic surgeon is looking at the CT scan and looks very concerned. He tells me he cannot help me; it is not a desmoid tumour. He is referring me to another doctor who is a specialized surgeon.

I have my appointment with the specialized surgeon. My friend comes with me as she knows that I need some emotional support. The specialized surgeon sees the lump and immediately takes a biopsy and books a colonoscopy. Another month goes by until the colonoscopy. I see the surgeon there and tell her that I feel the lump is growing. At that point I believe she becomes concerned, and says she will speed up the biopsy results. The colonoscopy goes well, and she afterwards tells me she did not find any polyps.

At that point I remember starting to read a book by Louise Hay. It was called ‘You Too Can Create an Exceptional Life’. In that book she says she had cancer early on in her life and had beaten it, and that she had learned many life lessons through that experience. I could not finish that book for a very long time; as I did not want those life lessons if it had anything to do with cancer. I also had a dream during that time period. My Grandma came to me and gave me a hug. I will never forget that it was like she was really there. It was very meaningful to me as she was the only person ever in my life to show me unconditional love -that hug meant the world to me.

One day my surgeon called me into the office for an appointment. I went to this appointment alone. She said that she was referring me to a couple of different oncologists; she did not tell me that I had cancer, but referring me to those doctors made me realize how serious this ‘lump’ had become. I remember walking to my car, feeling very small and alone and breaking down and crying, not knowing what to do. I ended up emailing my boss to tell him my appointment did not go well, that I would not be able to come back to work that day and that I had appointments for the next couple of days with doctors so I would not be back in that week. I went home and slept, emotionally drained, scared, and not sure what to do or who to tell. I didn’t know anything yet, but I could tell that something was very wrong. I still had not let anyone really know the magnitude of the situation, as I was trying so desperately to ignore the fact. I had at that time very little emotional support as I was spending most of my time with my emotionally unavailable boyfriend, rarely spent any time with my friends, and my Mom lives in BC.

I woke up for my appointment with the oncologist on a very cold morning. I asked my boyfriend to start my car as I did not have a block heater at the time. The car started and my boyfriend was off to work. I woke up an hour or two later and my car would not start. I called the number I was given and remember talking to the clerk. She said it was very important that I come in to another appointment as soon as possible. As I missed the original appointment I would be assigned a different oncologist, Dr. Shantanu Banerji. Although this may have been just a coincidence that my car would not start, I truly believe that is was fate that my case was moved to Dr. Banerji as he became a saving grace in my life.

My appointment with Dr. Banerji is on a warm spring day at St. Boniface hospital. I am given the worst news of my life: “You have synovial sarcoma. It is a rare cancer that is treatable, but not curable, and you will have to start chemotherapy.” I revolt in my mind; there is no way I am doing chemotherapy. Both of my grandparents had passed away from cancer. My Grandpa had gone through chemotherapy - I had watched him pass away from very painful chemotherapy treatments, and I believe that it eventually killed him. I am told that I may want to think about harvesting my eggs if I would like to have children. This threw me for another loop, my mind swirling, I am crying and once again I find myself facing terrible news alone. No way, I was NOT going to get chemotherapy – NO WAY!

Who will I tell first? I have to tell my Mom. I couldn’t drive yet because of the tears so I called Mom. I then email my boss and phone my best friend, who tries her best to console me. What I really need is someone to be there physically for me. I am off to the Pharmacy to get my pain pills. I phone another friend, and she says not to tell her what has happened. She will meet me at my place. Thank God, someone to be with me at this time, exactly what I needed. We head to the Forks for some strong drinks and discuss what we think may happen.

My next appointment is with the radiation oncologist, who does not agree with my assumption on chemotherapy. He said he would rather do chemotherapy then radiation because of the side effects. I did not listen to him; I wanted to do the radiation, and so radiation began.

Just before I start my treatments, my best friend called me to come over to her place, she and her family were there. She called everyone into the living room and they presented a gift to me. Her kids had fundraised for me at school for the expenses of parking every day at Cancer Care Manitoba where I would get my radiation treatments. They had also put together a binder of positive messages that I could look at for strength while I was going to my appointments. It was so overwhelming, what amazing children to do this on their own. They were supporting both me and their Mom in a very beautiful way in which I will forever be grateful. Each time I went to pay for parking I would think of the support I had and it helped me through.

I had learned through a book I had read to think positively and you will do well. So every time I went to radiation I would keep repeating over and over to myself, ‘Thank you for healing and health’. I was also going through some very low points in my life. Not only did I have to face my mortality, my boyfriend was not at all supportive. Not once did he ask me about my radiation treatments. 

One day I was running across the street to catch the bus to go to work and it felt like a car had hit the back of my leg. I fell to the ground and looked around for the car that hit me. For 3 weeks I could not walk and was in lots of pain. Finally my best friend, who is one of my biggest supporters during this whole experience, took me to emergency to find out what was wrong with my leg. She finally turned to me and said, “You know your boyfriend should be the one here right now and not me”. He had been avoiding the fact that I was sick by not talking about it, ever. This in turn was not supporting me at all. Some people just cannot handle it when other people get sick and that is what happened with him, so we broke up. I was crushed. I truly believed we would be together for the long term, which is what I had asked him when I was well, and he was committed. But once I was sick, I had broken the rules: new game, new rules. 

Now two years later, my heart is healed and I know I am better off without him, but that experience hurt, it really, really, hurt and for a very long time. I still haven’t found the courage to find another boyfriend, but soon I know I will find someone will love and accept me for me, cancer past and all.

I am still trying to handle all of the changes in my life. Radiation is now ending and all of a sudden I am sick. There is no way to even describe the pain. I am now being given so many pills but it still hurts. I’d say it is not until a couple of months after radiation is completed that the pain subsides. I am still working most of the time, with the exception of two weeks when the pain is at its worst. Because of my fresh break-up from the man I love, I am now at a very low point in my life and going regularly to see a counsellor.

My surgeon wants me to do surgery to remove the lump. She says it will be 2 weeks in the hospital without moving and then 8 to 9 months of physiotherapy to restore full walking with a possibility of limping my whole life. My Mom comes in from BC and is committed to staying with me while I have surgery and get back on my feet. Her husband drives with her so she will have her car. My surgeon sends me to do a PET scan, and then I wait for the date of the surgery. Mom and her husband go to my Aunt’s, which is a couple hours away. 

The surgeon’s office calls me at work to make an appointment with a lung surgeon; I totally lose it, why would I have to go see a lung surgeon now – what is going on? Remember this surgeon made appointments with the oncologists without letting me even know I had cancer. The clerk on the phone says she will call me back. When she does, she tells me to to come in later that day for an appointment with the surgeon and lung surgeon. I right away start phoning Mom who is at my Aunt’s. I do not want to go to this appointment alone. I have been to too many appointments alone, and have faced too much bad news alone. I get a hold of my Mom, and she races to Winnipeg to pick me up and go to the appointment. My surgeon comes in with the lung surgeon, and they both look very morose. They break the bad news to me. My PET scan has showed I still have cancer; it has now spread to my lungs. I am now facing Stage IV cancer and she says to me I have to go to chemotherapy, it’s my only choice.

Mom and I can barely find our car after that appointment and I’m unsure how we even drove. We ended up at my favorite neighborhood pub staring forward, our thoughts tumbling and both Mom and I could not stop the tears from pouring down our faces. The surgeon has signed a form that is a doctor’s note that pretty much says I am too sick to work, with no end date. That scared me too. How was this all happening to me? Chemotherapy? I had been so adamantly against it this whole experience and now it is my only choice going forward. I knew at that point I really needed my friends. They had always been there for me, my chosen family. I called them that evening and told them the bad news, and it felt so surreal. They all needed to see me. When you hear your friend’s cancer has spread you know it is for real and you need to see them immediately. All three of my best friends came over. Crying can be such a great release of emotion and is needed at times like these. I remember crying so often from that point on that sometimes I was not even embarrassed or even tried to hide it. 

Mom and I went to see the chemo oncologist, Dr. Banerji. He said I could start chemo anytime. Since my Mom was there from BC and she had planned to stay with me for the next two months for my surgery, I decided to start as soon as possible. We both were so unprepared emotionally to take on cancer it was ridiculous.

My Mom is physically there and wants to support me, but emotionally she had checked out. I was crying all the time and found myself in a constant pity party. My counsellor finally told me that I needed to allow myself 10 minutes a day to feel sorry for myself and then move on. Friends now say that I was ‘strong’ but I don’t ever remember being strong. I finally started leaning on friends for strength and they came through. My three best friends got me through the worst days of my life. The prayers of strangers, friends and family held me high even though now I was at my lowest point ever. I know I am very lucky to have had that much support and love because those are the things needed most. I searched for a support group to join at that time but since my cancer was so rare there were none available. 

I am hoping through the Sarcoma Cancer Foundation I will be able to start a support group here in Winnipeg so that those going through this cancer will have people going through with them. I always saw so many supports for people with breast cancer. I remember them having a sign that I would inevitably stare at while waiting for my appointments, I have to say I felt some resentment about having sarcoma, this disease that I had to face without others as it was so ‘rare’. My best friend even talked to our members in Parliament. The most they could come up was with an internet support group which I was not interested in or a phone call from someone who had gone through Sarcoma. The social worker at St. Boniface could only come up with a ‘young adult’ support group, but with me turning 40 soon, I felt that it was inappropriate to attend. I did speak to someone on the phone that had Sarcoma but I felt it wasn’t the right support needed at that time. 

After my first chemo treatment I was so sick right away and mostly nauseous. I barely moved the whole week so my joints also ached. It was about then I started getting hot flashes. Dr. Banerji came by a lot during this time to check on me, and he was adamant that I start walking while in the hospital; I did not listen to him after the first 2 chemotherapy sessions in the hospital as I was too sick to walk, which I later regretted. I did four sessions of chemo, each session was a full week in the hospital 18 hours a day doing chemo, with a three week rest period between sessions. I had mostly private rooms, as I was very susceptible to other people’s germs and had a lowered white blood count. My Mom and I, during the weeks between chemo treatments, would walk; nature and sunshine meant so much more to me as I would be in the hospital for the full seven days without leaving. My joints ached for months and months as I had lain in bed for the first two sessions of chemo. We would also go to my Aunt and Uncle’s farm for the week and the slow pace of the farm helped me to recuperate after all those chemicals being forced into my system. 

Dr. Banerji had consulted with an expert on curing nausea and my last two sessions of chemo where so much better, as they had figured out which pills I was to take and when. At times I would go get blood transfusions as my white blood count was low. Somewhere in there I decided that 4 sessions of chemo where enough, that I would do no more than that. The long days in the hospital drove me crazy. My place of work at the time was Truth and Reconciliation Commission of Canada. They held a benefit for me and what better day to hold it but on my 40th birthday? Again, it is so overwhelming the support and love I was receiving from everyone. I enjoyed having most of my friends and family at a fun filled evening put on by all my co-workers that had become such good friends. I even had friends come in from Thunder Bay to join us. My place of work when I lived in Thunder Bay was Thunder Bay Charity Casino where I had been a receptionist for six years. The staff there had also taken donations in my support. At the benefit I was presented with a healing blanket and birthday cake and I even gave my first decent speech. 

At that point I only had one more chemo treatment to complete which was the following week. I will never forget the last day of chemo as it was the longest day of my life. I stared at the clock for nine hours straight waiting for it to be over. I was in so much pain from all the chemicals and that recurring pain from radiation in my stomach. Mom, my bestie and my bestie’s husband, who drove, they were all so kind in picking me up from every single chemo treatment. I woke up early on the day I was to be released, and I got to say goodbye forever to all the attentive nurses who looked after me. I was finally my done with my chemo treatments - it was over. Dr. Banerji looked at all the tests after and it seemed like the cancer in my stomach had gone, which was such fantastic news. As for the cancer in my lungs, I would have to go to the lung surgeon and see if he could do surgery to remove it. So I was going to more doctors’ appointments. 

My family from Texas came in to see me at that time so I remember there were a bunch of us who all went to that appointment to find out if the lung surgeon would do it. Yippeee!!! Yes, it was a go. I could finally see the light; this too may pass. My Mom went back to BC, as she had now been away from her home for four months. I then had two lung surgeries, one for each side of lungs. They were both extremely painful surgeries. I called my friend very early the morning after the first one to come pick me up. Once she had gotten there and the doctor prescribed pain pills, I was discharged from the hospital. Thank goodness that for the next lung surgery my Mom and her husband came back. For that surgery I was ensured I would be hooked up to a morphine machine and every time I felt any pain I  could administer it myself by pushing a button. After the two surgeries I went for my appointment to find out if the lung surgeries had gotten rid of the cancer – again fantastic news. No cancer was found. It is now November 2012. My surgeon still wanted to take out the original lump but I thought about it and I was ok with having a lump. Two more weeks of lying in a hospital bed and 8 to 9 months of physiotherapy seemed to me like a lot of pain and aggravation for a lump. I may change my mind one day, but for now I’m just so happy to be in remission.

It was so strange and surreal for me to go from the biggest fight for my life to all of a sudden being told by Dr. Banerji that I was in remission and to go home and forget about it. Every six months since then I go in to have a CT scan to see if I am ok. I always end up extremely anxious waiting for the results thinking that the cancer is going to come back. I know logically that I will be fine, but I for some reason I always feel a pain in the lump during that time, just to be told that my lump has reduced in size since the last CT scan and that I am still in remission. Dr. Banerji is always so kind listening to me panic and calming my anxieties and he tells me I am not the only one to in react that manner. I am so grateful to my God and to Dr. Banerji to have this new lease on life. Sometimes, though, I wonder why I was spared from death. Synovial sarcoma cancer is hard enough to beat, but I beat it to the amazement doctors and truthfully myself. Every day I thank my God for one more day and I am so excited for the rest of my life.

Perhaps someday we can find the cure for Sarcoma. What is desperately needed right now is more funding for doctors such as Dr. Banerji to be able to research this. At this time there is very little funding for Sarcoma research. It would be great if we could all start supporting research by donating in order to eliminate it entirely.