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Meet Terry

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Time to meet another "neighbour" in our online community. This month I'm pleased to introduce you to Terry - better known on our community as Windancer. Here's a bit about him, in his own words, starting with his mantra:     
 

This has been my mantra for life for many years now. It is how I live my life, I have a framed photo on my wall (see photo above) that I wake up to every day and it’s one of the first things I see. That’s me in the yellow hat in the lower left corner. I also have a fridge magnet with that saying on it, which unfortunately I also see far too often, but that is another story for another time.
 
My name is Terry,I am a 3 time survivor of this insidious disease. I was first diagnosed with Mantle Cell Lymphoma (Stage 4) and in 2002, It has been a difficult 12 years of my life, all the highs and lows that I have experienced during my journey. I am definitely stronger for all that I have experienced. I know we all have cancer stories to tell, here is a shortened version of mine.
 
It was a beautiful Labour Day afternoon and I was competing in the Provincial Windsurfing Championships at Regina Beach when a gust of wind blew me off my board and ruptured my spleen. In a fraction of a second my life changed drastically, I now tell people that the sport that I love more than anything else probably almost killed me and saved my life at the same instant. I went to the hospital where I received the awful news that I had Stage 4 cancer. To make a long story shorter I had an autologous (my own cells) Stem Cell Transplant in Saskatoon RUH in May 2003.
 
In 2006 I developed testicular cancer for which I had successful surgery for and I seemed healthy. In the spring of 2008 I was 5 years out and I figured that I was done with cancer. I was severely wrong, at this time I was informed that my cancer had returned stronger than ever and I would need another SCT, this time an allogeneic one (donor cells). I flew to Montreal (where my brother and sister in law lived) and had the transplant done there, eventually finding a compatible donor in Texas.
 
Everything seemed to go well, I left for Montreal in August of 2008 and returned home to Regina in early January 2009 seemingly okay. In late February, I was readmitted to Saskatoon RUH where I quickly lost a100 lbs and became very sick, After 3 weeks my brother came to Saskatoon where they told him to take me home to die because they figured I had a week or two to live. When the 2 weeks had passed and I was still alive, things changed for me, I looked at that fridge magnet and decided I was not ever going to give up. For the next 3 months I was under Palliative care, I could not walk initially, progressed to a wheelchair, a walker, a cane to nothing.
 
Today you would never know I had been sick, I gained back the 100 pounds although I am like everyone else I would like to lose 20 of it. I lead a very active and fulfilling lifestyle. I know my story is not indicative of everyone so please keep that in mind.
 
I have been involved as a volunteer with the Canadian Cancer Society's peer support program for nearly 4 years now. Because of all the hardships that I went through, I felt I really wanted to give back to the cancer community, I know how scared and alone I felt back in 2002 and I certainly didn’t want someone else to feel that way today. In the past 4 years I have talked to people all across Canada mainly about Mantle Cell Lymphoma and Stem Cell Transplants. In a very ironic twist of fate last year I talked to someone in PEI, who was seeing the same doctor the very next day in Halifax that oversaw my first SCT in Saskatoon.
 
I feel I am very resilient and patient, one of my greatest achievements is overcoming this insidious disease, so far at least. If there is one small nugget of knowledge I can offer to someone, it would be know your disease, become aware of all your options, I know cancer can be scary but do not let it consume your life because it will just drag you down. It may sound somewhat odd but in a small way I owe my life to my dogs, when I was first sick Hercules and Haley depended on me, they provided me with companionship and forced me to get some exercise by taking them for a mile long walk every day. Unfortunately I lost both of them a couple of years ago but I now have Samson to take care of.

I think that a sense of humour both in me and my caregivers was very important in this ordeal. It has allowed me to go back and do some of the things that make me the most happiest like windsurfing, although when I was sick my balance was compromised so I kayak a lot more today. I visited the Johnstone Strait (off of Vancouver Island) and kayaked with the Orcas for 6 days in 2010 and last November I went on a 11 day 120 mile paddle in Baja, Mexico. 
 
There are still many things I want to do still, I really want to visit Machu Pichu in Peru. It truly amazes me that a city could be built at an elevation of nearly 12,000 feet that was not discovered until the beginning of the 20th Century. I am totally fascinated with the Mayan, Aztec and Inca people, they had so much knowledge. I plan on taking a 2 week cruise on the rivers in Europe from Amsterdam to Budapest next year.
 
If you think I could be a benefit to you please get a hold of me, I can listen very well.
 




Comments

Terry, thank you for sharing your story & for your candour. You give us all inspiration and hope. I also enjoyed hearing of your explorations and your hopes for future travel. I have the same magnet on my fridge and it has been my salvation. As my mother faces Stage III Inflammatory Breast Cancer and we are in the midst of chemo, I am trying to instill the same 'fighting' spirit in her. Any words of wisdom you could share for the dark days?
  • Posted Wed 17 Dec 2014 10:48 AM EST
Thanks for your post.....It is amazing how or where we draw inspiration from. In 2010 I spent 6 days kayaking with the Orcas and dolphins in the Johnstone Strait off of Vancouver Island and in 2013 I spent 11 days in the Sea if Cortez on the east side of Baja paddling 120 miles from Loreto to La Paz.
  • Posted Wed 17 Dec 2014 01:35 PM EST
Wow Terry what a story, I am only a 2X survivor. but the positive attitude is what did it for me. Silly of me but I used to tell the cancer that it was not welcome in my body and I wanted it gone. Well after 15yrs I'm still around to bother every one that I can. So Keep moving and it was my cat who saved me. Wow can animals every make you live longer. Enjoy your trip next year I'm jealous....
  • Posted Mon 15 Dec 2014 09:30 AM EST
Thanks for your post, my mantra keeps me going all the time, I have said it many times "I will not let this disease beat me"
  • Posted Wed 17 Dec 2014 01:37 PM EST
Date Posted: Aug 30, 2014 at 10:01 AM by IRENE: Terry thank you for your inspiring story. I was diagnosed with NSCL adeno carcinoma back in April 14. I went from healthy, active, never sick to being diagnosed with this stage IV illness. I have been keeping very busy and very upbeat but there are days and moments in those days when it all hits and I realize the magnitude of what's happening to me. How did you keep going during the darkest hours? I have been fortunate in that I am able to use Iressa as a first line treatment - I am EGFR positive! Problem is there doesn't seem to be many people taking this medication. I would love to talk with others at various points of using this drug and have not found any to date. Did you make long term plans or did you stick with short term only? Thanks for being there and listening.
  • Posted Tue 21 Oct 2014 12:31 PM EDT
Several people have privately emailed me, thank you. I am very happy my story provided some inspiration to them. I guess what I am trying to convey is never ever give up hope. The human body's desire to live is an amazing thing.
  • Posted Tue 18 Nov 2014 09:54 AM EST
Date Posted: Aug 30, 2014 at 12:31 PM by WINDANCER: Thanks for your comments, I certainly appreciate them. It was very difficult to keep going in the darkest hours, I know not everyone will agree with me, but I am not the most religious person so I felt that praying now was a little hypocritical at this point. I certainly don't to turn this into a religious debate. I guess I just kept positive As far as my plans are concerned, I must admit as I was getting stronger, I planned further out. This was very important to me in 2010 when I went kayaking in the Johnston Strait for 6 days. It showed me that I was capable of taxing myself this way. Everyone on the trip knew the hardships I had been through. As I said before know your limitations and keep them in mind, but it is my opinion that you have to "push" yourself a little to get stronger. I went to the Baja last year and paddled a kayak 11 days, 120 miles from Loreto to La Paz, as I mentioned in my story I want to go to Europe and take a river cruise next year. So to answer your question, I guess I am making longer term plans. terry
  • Posted Tue 21 Oct 2014 12:37 PM EDT
Date Posted: Sep 21, 2014 at 9:06 AM by DAUGHTER: Hi Terry just wondering what would be the best advice to give to a caregiver who is struggling to keep it all together
  • Posted Tue 21 Oct 2014 12:36 PM EDT
Date Posted: Sep 30, 2014 at 1:06 PM by WINDANCER: Daughter I apologize for the very late reply, I did not see your comment until now. You ask a very good question and I really don't have a definitive answer because I was the one afflicted with the disease not a caregiver. In my case what I was looking for in a caregiver was someone who could be objective under very trying circumstances, a person who was very patient who could take the necessary time to effectively listen and provide support and that objective opinion that I needed to hear. This was me and maybe the person you are caring for is much different, I think you have to know and really understand that person to know how you can effectively help or support that individual. When in the Cancer Peer Support Group, I often tell people know and understand the disease, know your options and treatments but under any circumstances do not dwell on it because it will only serve to bring you or your loved one down. I truly hope that this little tidbit of info helps. Terry
  • Posted Tue 21 Oct 2014 12:35 PM EDT

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