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Sep 03 2012

Survivors Spotlight – Matt Sweeney

Matt Sweeney – by SCTA Volunteer Paul Knipler

Father’s Day, a day to celebrate a Father or, if you are a Father to celebrate you; 20 months ago our June Spotlight SCT survivor from Seattle, Washington wasn’t sure if he’d ever celebrate a Father’s Day in the same way his family had before ever again.

Today though, Matt Sweeney is grateful to be aFather to two wonderful children, Drummond (8yrs. old) and Caroline (11 yrs. old) and loving husband to wife Kristine. Drummond and Caroline are grateful that their Dad is still with them to celebrate and grateful for the many good things that have come out of their Dad’s surgery and for being a SCT survivor. As Drummond says; “One good thing is that you’re home more now and I can dribble past you when we play basketball.” Caroline is proud of her Dad and says he is “positive and confident” and he “inspires me to be a positive person even though you may be in a tough situation.” Kristine speaks of the “incredible journey” for Matt, their family and for herself as Matt’s wife.

Being very physical, enjoying most every sport he encountered and loving the outdoors while growing up in Spokane Washington, Matt has always been an avid biker, hiker, skier, kayaker and the like. He proposed to Kristine while they were on a bike tour of Ireland. Today, Matt and Kristine are involved in coaching and cheering for Caroline and Drummond as they pursue their own sporting activities. Drummond notes with some sadness that after his Dad’s surgery for removal of his SCT, he is not able to “play some things but we still have a lot of fun and I can run faster than my Dad now!” Caroline adds, “The worst thing that came out of it is he cannot show me a lot of things that he wishes he could when he coaches me. Like basketball moves, volleyball bumps, and show other kids what to do, or move heavy things around.”

Here is Matt’s story of his SCT in his own words: My tumor was a supependymoma, one of the most benign spinal chord tumors, located between T-9 and T-11. I didn’t need further radiation therapy and the threat of recurrence is very low for me. Another feature of this type of tumor is slow growth. This allowed for plenty of time to research and contemplate the surgical decision. I chose to have surgery a year and half after diagnosis when it became clear that my neurological symptoms were increasing.

I had a relatively good surgical outcome. The tumor was fully resected, though there were neurological deficits created from the surgery. I spent eleven days in the hospital before being released to home with in-home PT. I progressed from wheel chair to walker to arm crutches and was able to discontinue the crutches after three months. I am now 20 months post operation and able to walk unaided, though with a significant gait disturbance. For longer distances I use a trekking pole. I have dysethesia, intermittent nerve pain and burning and significant sensory deficits in my left hip and leg and across my buttocks.

I always want to be respectful when I talk about my personal challenges because, as survivors of SCT surgery, our results cover a broad spectrum and some have it so much worse than others. I feel very fortunate that I can still function at a very high level physically, but we all deal with the losses that stem from our tumors and surgery. I love that we can all share honestly, without judgment and support each other no matter where we fall on the spectrum. This forum has been a tremendous blessing to me in that regard and it has been a huge boon in so many other ways as well.

I do want to take a moment to recognize one individual from this forum in particular, Carol Miller. It has been such a gift of this forum to meet people like Carol. Carol has dealt with so much and has been a champion for us all. Every one of her posts is a treasure and deep gift of her self and her incredible strength and faith. So to her and the many of you who have served as such inspiration and given such valued advice, I will always be grateful.

Even with that deep inspiration it can be a challenge to accept my new limitations. I have always been so active and have prided myself on staying physically fit. I am physically unable to do so many of the things I loved to do but I have adapted. If there is one thing that has been my saving grace, it is exercise. It has been instrumental in my recovery as well as in maintaining range of motion, muscle mass and strength, pain management and getting good sleep. But ultimately, for me, it is the emotional lift that is the greatest benefit of exercise.

It does not matter if you have the engine and body of a Ferrari and three out of four good wheels. You can only go as fast as the fourth bad wheel will take you. So instead of covering 100 miles in an hour you can only cover 25 miles. That means deciding what 25 miles to cover and letting go of the other 75. Mobility is part of the problem for me, but fatigue and pain slow me down as well. It can be very isolating to go at this pace and letting go of things I dearly love has been difficult.

I can get frustrated and angry and feeling sorry for myself. The best antidote for this is the loving relationships with which I am blessed, particularly as husband and father.

I cannot put into words how important the love from my wife, Kristie and my children played in getting me through this difficult time. I am fiercely independent and don’t like to lean on others but I had to lean on Kristie, figuratively and literally, and she was there for me. I always tell my kids that I love them more than life it’s own self and that is a good thing because there were lots of times after diagnosis and surgery that I was a bit angry at life its own self, so it was great that there was something bigger then it’s own self to keep me going.”

Kristine remarks that “this has been an incredible journey for Matt, for our family and for me as Matt’s wife. From the time that Matt was diagnosed with a spinal cord tumor he has shown our children and me courage and strength in light of so many uncertainties. He continues to demonstrate unbelievable faith, even in the darkest of moments. Matt and I have grown closer, especially since the surgery. I feel privileged to be Matt’s confidant and the person that he shares his triumphs and difficult times with most often. I have hopefully become a better partner because I have been challenged to just listen more and not try to “fix” anything. It is difficult to watch Matt have bad days where he feels very sad and discouraged, uncertain about his “new” body. To me he is the same handsome, caring person that I married so many years ago. One of the most beautiful outcomes of this event is that we have had to accept help at times from our family, our friends, and our community. The outpouring of love, support, and prayers has been transforming.”

It appears as though this Father’s Day will be very special for the Sweeney family. There is much to be grateful for and although Matt the Father and Husband may have changed physically, being the survivor of an SCT has certainly changed the way that he thinks and feels about his life with Kristine, Caroline and Drummond and the way that his family thinks and feels about him.

Matt puts it all into perspective with a favorite quote and these words:

 “Nothing is more practical….than falling in a love in a quite absolute, final way. What you are in love with, what seizes your imagination will affect everything. It will decide what will get you out of bed in the mornings, what you will do with your evenings, how you spend your weekends, what you read, who you know, what breaks your heart, and what amazes you with joy and gratitude. Fall in love, stay in love, and it will decide everything.”

 ~ Pedro Arrupe

Matt goes on further to say: “This tumor sent my life down a path far from my choosing. I find myself in new territory with new challenges, both mental and physical. I have also found that this path has changed me in profound and beautiful ways. I love this quote because it is easy to get lost in unknown territory. So love serves as my North Star. I am blessed to have great love in my life, from family and friends and the community that we have formed through our church, school, neighbors and the like. With love all things are possible so I know I will embrace this new path. Thank all of you, again for your support through this forum.”

– By Matt Sweeney & Paul Knipler