My cancer story began long before I knew the cancer was there. In hindsight, which is, of course, 20/20, I can look back at an obstetrical ultrasound done March 5, 2002 and realize we should have questioned the “ill-defined area” that was my tumor. But the obstetrician did not question, and I had not yet learned that you should always read your own reports.
My son was born October 11, 2002 and I thought all was well in the world. But a year later I was still struggling to lose the baby tummy. Despite my attempts to eat well and exercise, my tummy just won’t get flatter. I felt very foolish, but finally in November 2003, I visited my family physician who, God bless him, took me seriously and sent me for an ultrasound.
Things moved fast. The ultrasound showed a large mass, and I was referred to the Kingston Cancer Center, suspected of having an ovarian or uterine tumor. Surgery was booked for Dec 19, 2003. Life was whirling around me, and before I knew it I was heading to the operating room. The tumor was a retroperitoneal myxoid liposarcoma measuring 25 x 25 x 25 cm. No clean margins were possible with this type of tumor, and no further treatment was suggested. At the time I was very unaware of the seriousness of liposarcoma and felt I had just had a one-time close call. I went on with life not really giving cancer a second thought.
Regular CT scan follow-up continued, and I really thought nothing of it. In fact, in fall of 2006 I had a requisition in hand and was to book my own scan with Northumberland Hospital, as it was closer instead of going to Kingston, and I hadn’t bothered to do it. My best friend likely saved my life the day she said, “Hey, shouldn’t you have gone for a scan? Give me your requisition, and I will book it for you.” Thank you, Brenda! She booked my scan in January, and I went and then left on a holiday. Upon my return the doctor’s office was trying to reach me. Something was suspicious on the scan, and they needed to see me. To make a long story short, I was back in the operating room on February 21, 2007 where they removed four tumors, all recurrent myxoid liposarcoma.
Between February 2007 and February 2008, I embarked on a personal mission to lose weight, eat well and exercise. I felt very successful and reached my ideal weight, taking 2-4 cycling or cardio classes a week and lifting weights. I felt great, had my stress level under control and was enjoying life with my husband and kids. If physical fitness could control cancer, then I should have never have had a recurrence, because I was the model of good health.
My health initiative did not stop the February 2008 scan from showing a new mass, and I was referred for a second opinion to Mount Sinai and Princess Margaret Hospitals in Toronto. Here is an entry from my diary in September:
On October 31, the sky fell in on my world. My case was discussed at the tumor board, and the decision was that my tumor was inoperable. Radiation was not recommended, and a cure was not possible. Perhaps chemo (doxorubicin) would slow down the symptoms.
I will never forget that day. I couldn’t really believe what I was told, that this tumor would slowly but surely take over my body. I began to fight…fiercely. I searched for other answers. I simply could not accept that this was it. I have heard it described as crazy, courageous, foolish, expensive, miraculous, understandable and even unbelievable, and I am not recommending this step to anyone else, but what I did next was seek cancer treatment in Mexico. Under the care of an oncologist, I was treated with a low dose course of radiation combined with chemotherapy. At that point in time my scans showed I had three tumors overlying the renal arteries, the vena cave and the pelvis. I spent the next two months at home, recovering strength and weight. In February 2009 I booked an MRI scan at a private pay-for-use clinic in New York. This scan showed dramatic shrinkage of the tumors, and I was encouraged to seek a surgeon to remove the tumors.
A surgeon with the KRCC was very cautious, but after discussing all of the potential risks with both me and my husband, he agreed to operate on February 17, 2009. I cannot thank him enough for his skill as a surgeon and his willingness to let me have my chance at living longer. According to the surgery notes “a long, tedious dissection was undertaken, and we were able to get this tumor off of the renal vessels and off of the vena cava and remove it completely…and again excised the pelvic lesion in a similar fashion.” All tumors were resected, and all three were identified as recurrent myxoid liposarcoma. Here is an e-mail I wrote in June 2009:
Hi Bernie – I think of you as one of the cheeriest people I know! I have always enjoyed talking with you. Of course it helps that you that you have a really awesome accent! Cancer changes you forever, but some of the changes are good. It taught me to enjoy the day that I have in front of me, right now. I have quit putting off doing things tomorrow. Today I am going on a school trip with my son. Last year I would have said no, I was too busy at work and I would have promised him next year I would go. Not anymore. I realize it may be 5, 10 or I hope 40 years from now, but there will come a time when I am not here to see him grow and I should be enjoying all I can now. Live in the moment. Love the day you have before you. You are so right; life is a play. You never know when the curtain call will come but we can do our best to make our play the best ever no matter what. Part of that is having good friends. You are my good friend. Thank you for being my friend. I hope I am a good friend to you. – Teresa
Again, I wish I could say this was the end of the story, but there is much more. As you read this it will seem that I keep getting my life waylaid by cancer, but when I look back on it that is not how I feel. I feel I have lived so much life between today and the original diagnosis in 2003. Events in my life stand out now, like pictures in pop-up books, and there are so many of them. I have been blessed by others who have shared their stories, I have learned, loved, grown. Life is so rich now. So don’t start to feel sad or discouraged as you read on. Know that each crisis was a platform from which I was able to spring from, up and onto the next step in life.
The cancer came back in the summer of 2010, and through the help of an online support group called ACOR, I met other Canadian Sarcoma patients who encouraged me to seek a second opinion from the Segal Cancer Center in the Jewish General Hospital in Montreal. I met an oncologist there in the young adult clinic and was impressed with how, while being candid about my prognosis, he also offered me the hope of treatment options. The tumors were scattered this time, like a dusting of cancer all over my abdominal wall. These were a few of my thoughts before treatment started:
I was out running this past Saturday morning and it was a typical fall day, breezy and cool. The leaves were blowing off the trees and swirling around on the road in front of me. I felt God was speaking to me, wrapping around me like the wind. I heard him say “It’s okay, it’s your fall season and all seasons have a reason. Your fall, just like the trees, is a time to let go of your leaves, to quit growing and focus your energy into your roots. It is a time to use your inner strength and prepare for winter. Winter will be a time of rest, regeneration and renewal. It will be a quiet time, with peace and sleep, a healing time. Though you won’t be able to see it, a lot will be happening deep in your roots as you build strength in preparation for Spring.” When my Spring arrives I will once again flourish, growing, reaching for the sun, showing my leaves for all to see.
Chemotherapy was suggested, and I embarked on a new adventure. Every three weeks I would go to Montreal for a three night stay in the hospital to receive chemo infusion by IV. I became bald, which was kind of cool in a twisted way. I discovered I have a well-shaped skull, and since I don’t like fussing with my hair, putting on a scarf or hat suited my style just fine. Chemo also made me tired, fat, nauseous, irritable and forgetful. Chemo brain was the worst – I became incredibly forgetful under chemo treatment. The worst was I lost my vocabulary. It’s hard to describe, but I would be talking to someone and the word I needed would be missing. It was like a cloud…I knew the word was in my brain somewhere but I couldn’t see it.
Here is an excerpt from my diary during treatment in February 2011:
I am finding things difficult and it bothers me that I can’t get over it. In my mind I know this not reasonable, but I don’t seem to be able to make my heart know it. Here is the embarrassing part – my disappointment is because I thought I had wonderfully skipped past the need for surgery. Yet today, when we saw the oncologist, not only was surgery back in the plan but he also tossed in two more chemo cycles. Double POW. Like I said, in my mind I know all the good stuff. The chemo is working exceptionally well, we are getting better than expected results, and I am now a surgical candidate which was not possible six months ago. It’s all very, very good. I can see the disappointment in people around me too. I guess what happened is for a week we lived without cancer and then we had to take it back. I am actually really angry at myself for jumping into saying the cancer was gone and no surgery was needed. I should have read that report more carefully and been my usual questioning self. I let my guard down there, and now it has hurt a lot of people around me.
It’s also making life crazy. Last week we were filling up my week with plans, and now I am leaving for chemo and all this stuff I was going to be responsible for I cannot be. It’s hard to push all that off of my plate; it makes me sad to not be able to do these things.
There, that is the ugly truth of it all… Please know I really needed this chance to vent. This is the worst of it, and I feel much better for having put it into words. Just don’t hang onto to this message too long; it’s like a good cry – once it’s done it done and we can move on.
It was a long seven months, and although my family won’t admit it, I bet I was a little unpleasant to be around. However, it was all worth it, as the cancer was going, going, gone, and by April 2011 my scans were showing no evidence of disease!
Summer 2012 found me with the cancer back again…this time the scan showed one tumor but it was growing fairly quickly. Surgery was recommended this time, and they operated on me at Kingston General on July 19th. My incision is always pretty impressive, and this one was 29 staples. And surprise – instead of one tumor the surgeon found three of them. I am appreciative of his skill as a surgeon. I healed, spent the summer playing with my kids and celebrating life.
I do more of what I enjoy now. I garden and grow food, I ride my horse, I sit on the porch and marvel at the thunderstorms, I listen to the rain, feel the wind and get kissed by the sun. I love my husband every day. I appreciate my kids every day. I get frustrated and angry at things in life, but those feelings are not my life. My life is full of marvel. I smile, a LOT. I do struggle now with digestive issues from the surgeries but I just work with it, seeking medical therapies that will help. I talk a lot about my sarcoma experience, as I find it helps others. I am very open about all of it, sharing publicly my journey and the need for more awareness and research.
I get scared at times, but I have learned how to not worry. I pray – I love – I laugh, and when the scary creeps in I respect the feeling, honor it for what it is, and then I look at my life with my eyes wide open and see how incredibly wonderful it is. Right now, at this moment, I can’t help but smile and feel blessed. I live soaking up each moment as it comes, rejoicing in the awesomeness of it all.
There have been so many lessons learned through by cancer journey. I wish there was room to write them all down here, but I feel that would be more of a book than a story. I have learned lessons of love, giving and accepting help, courage, fear, determination and giving in, commitment, honesty with my kids and giving them space to grow, reaching out, reaching in, the power of fresh air, good food and knowing that no matter what, my husband is here with me. I am a fortunate woman.
I wish I had known how complicated and dangerous sarcoma was, and I wish I had sought opinions from larger sarcoma centers before going for my first surgery. I would encourage a friend just diagnosed to seek second opinions, read and understand your own medical situation, and advocate for yourself. And join a good support group like the Liposarcoma Support List, rely on sound information such as the Liddy Shriver Sarcoma Initiative’s website. Find what inspires you to fight for your life. I like Crazy Sexy Cancer by Kris Carr, The Cancer Crusade, Lance Armstrong, and The Cancer Fight Club. There are many to choose from, so look around the web and find what inspires you. There are often free publications available as well. Most of all – believe in you.