Spring has sprung and the flutter of cherry blossom petals has replaced the twinkle of snow. While this is a welcome time for most, we Wunders mourn the departure of winter, as hockey season sadly comes to a close.
Hockey has been, and is now more than ever, a very important part of our lives. As parents, Kurt and I have a passion to share with our children. Some of our fondest memories are playing with (and against) them. One of our greatest joys as parents is to watch our children compete as athletes. (It also doesn’t hurt that they’re good at it- certainly better than we are!) When Kurt was diagnosed with cancer and awaiting surgery, our son Spencer brought a hockey puck to the hospital for his dad. Yes, Kurt was concerned about what would come for all of us, but let’s face it- he was also worried that he wouldn’t be able to coach or play hockey again. But, he wouldn’t be stopped and while sad to see that yet again, the illusive Rizzo Rink 11-14-year-old championship title was not to go to his team, he had a team. He did it, even when he was nauseous, weak and tired. He even stepped on the ice to play himself. A few months ago, we received an email from a parent of a child I had taught and who Kurt, my children and I coached at Rizzo Rink, here in Philadelphia. If you knew this former player of Kurt’s, you wouldn’t be surprised by the tenacious, never give up attitude of his shown below. It was so kind of them to share the following (unedited) essay written by amazing Brendan: I will always remember my hockey coach. I will remember how great of a coach he was to me, how he believed in me and how he and his family instilled positivity into me. As good a coach as he was, he was even a better person. Now he is suffering through cancer and has just received four rounds of kimmotherapy. I will give the advice to my former hockey coach for two years to believe in himself, just like he believed in me. It was very sad when I found out Coach Kurt was diagnosed with cancer. Just like he supported me on and off the ice when he coached me and I needed it, I will support him when his health isn’t going his way, like right now. I will tell him to believe in himself that he will overcome cancer, and he will recover really quickly. I believe you must believe in yourself to overcome tough situations and my prayers are going to Coach Kurt that he will this overcome cancer extremely quick. In conclusion, I want to give the advice to my former hockey coach. To believe in himself the way he believed in me. When he was coaching me, the biggest message he instilled in me was the power of positivity. Now attempting to overcome cancer, he will need all the mental strength to believe in himself, and to use all of the power of positivity he has. But I believe in him, just like he believed in me. Thank you, Brendan for your strength, support, advice and for believing in the power of positivity. Thank you, Lori, for your love, the love of your family and for allowing us to share these powerful words with our community.
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The hardest part of living with and loving someone with cancer is just plain being normal. Cancer is, quite literally, all-consuming. It is that puffy cloud that covers the sun on a warm balmy June day, whispering “I will never blow away.” The sun may peek out for a minute or two, but just as you feel your skin begin to warm, it is gone and there you sit in shadow.
It is exhausting. While you are doing your very best to help yourself and the people in your immediate circle carry on, you have the added burden of making everyone else feel better about your loved one having cancer. Why is this our responsibility? My husband can fly a plane, run a business, play the trumpet, make things explode, run a gas line, plumb a toilet, ride a unicycle, fix a car, play ice hockey, unsnarl a fishing line, and pour a martini so perfectly that its curved meniscus rises above the rim of its chilled glass without spilling a single drop. Sooo, make you feel better about his having cancer? Sure- why not. He can’t help it. He loves you all so much. Making you feel okay gives me anxiety. I had my first real experience with an anxiety/panic attack the first week of Kurt’s treatment when, surrounded by loving family members who had nothing but the best of intentions- I felt like I was going to suffocate. Sad, kind gesture after sad kind gesture was so overwhelming that I needed out... Immediately. I’m working on that. I will try to allow you to be sorry for me without my feeling vulnerable. I am really, really bad at that, I must admit. Yes, we are still so, so tired. I see my children immerse themselves in school and sports and friends. Well, kind of. My son’s grades have slipped and my daughter needs to rewrite her college essay; the one she wrote in September is no longer relevant. She keeps putting it off because it makes her cry when she thinks about it. But they have friends- really good friends. Monday mornings are the hardest for me. I have a million playlists and music aps for my long commute to work, but usually it’s just cancer, cancer, cancer, cancer, cancer. I used to cry every morning. I’m working on that, too. Songs that I used to never think twice about are now loaded with new depth, forcing me to emote. So, yes one of the things that always grounded me, that defined me, now reminds me that we are a long way from normal. I can say that there are some things that I thought would be hard to accept in our need for normalcy that have been easy- well at least for me. We have all adjusted to the ‘tape hat.’ Sure, it still gets double takes and an occasional question or two, but we are settling into its arduous routine. I’ve gotten proficient at applying and trimming the arrays so that if I need to change them before I leave for work I can manage. If I am shuffling around in socks, have trained myself to touch something before my husband so that I don’t get shocked. (Yeah, that happens). Kurt has developed a system for carrying his apparatus and extra batteries. Losing hair was not a big deal as it was getting shaved anyway. Did I mention Kurt looks great without hair? Normal? It is going to take some time. We are putting some coping strategies into place. Some need work. My goal moving forward is to push for that normalcy without making things weird. That is the trick. How do we have normal, how do we work on normal without creating something forced? This journey is still new and we are all still coming to terms with so many drastic changes. As time goes by, that familiar warmth will return. The clouds may never completely fade, but I can hope for longer patches of sunshine. When my phone rang, I wasn't prepared for the news I was about to receive.
Four days earlier, Kurt was driving our daughter Georgia home from a tournament in Canada. He needed to pull over because he experienced sudden, violent spinning sensations. He made phone calls to myself and to my brother and despite our advice, drove to the community hospital in Cornwall Ontario. After blood work and tests, Doctors concluded that he was experiencing vertigo, gave him some illustrations of exercises that he could do and then recommended he not drive for a couple of hours. (Luckily, a teammate and parent were selflessly able to escort the two and drive them home). When they returned, I knew something wasn't right. Kurt was disoriented. I described him as moving through our house like a 96 year-old drunk man. Although we had heard how awful vertigo could be, It had to be more; that couldn't be it. Something was neurologically wrong and I was nervous. He was unsure of where his body was in space and he felt awful. We followed up with our general practitioner's office; they also concluded that it was most likely vertigo and gave us referrals for a visit to his neurologist and PT as well as some prescriptions. The neurologist had Kurt perform some balancing and eye tracking exercises. He couldn't walk a straight line. The neurologist, concluding still that it was most likely vertigo, expedited a referral for an MRI (though while unlikely) was referred 'just in case' to rule out a stroke. She noticed how unhealthy he looked. He had lost weight and hadn't been sleeping regularly. "You need to take care of yourself," she said. Kurt had an MRI done a little more than a year earlier and there was NOTHING on it... I sneak away from our table to answer Kurt's phone call. "They found a mass on my brain," He said, and as I crumpled in the entrance way of the restaurant, I thought to myself, "Everything is about to change." With the help of my brother, I was able to race to the hospital, while he picked up Georgia from hockey practice. My son, Spencer, had earlier escorted Kurt to the MRI, and when they found the tumor, the two were rushed to the emergency room. Poor Spencer. There, I found Kurt and my son, and despite his insisting on staying, I made Spencer walk home with me. I packed a bag and headed back to the hospital. The emergency room was, of course, unusually busy and we waited for quite some time. I snuggled next to Kurt and we cried and laughed and joked and cried. He had two masses; one quite large and the other small and too deep and within too much vital brain business for removal. The neurological surgeon, despite a very busy day in surgery, took the time to go over the images and describe how the surgery would go and what to expect. We named the tumors Fluffy and Snuggles. Then we waited. We waited with a flood of friends and family that crammed into Kurt's tiny hospital room from before visiting hours until well-past. The outpouring of love was wonderful, but we were exhausted. My fingers hurt from the endless texts and updates I needed to send. Kurt was so strong the day of the surgery. He was ready. He was in a good place. We have lived a wonderful life together full of love and adventure. We were raising two amazing children. We were okay. Everything would be okay. About six hours later, the surgeon calls me out of the waiting room. I could tell by his expression, that the news I would receive wasn't going to be the news I wanted to hear. They got the big tumor, but it was glioblastoma. The tumor would be back. It was possible that Kurt had 12-18 months. Six days later, he was home. Six days later we had a finite timeline and an overwhelming list of things to do. Being in the hospital helped to keep all of this surreal, and now that he's home it is all just, well, sad. We hurt. We are raw. As I write this, our children don't yet know just how short our time with their father will be. Before you read this, they will. Will they be angry with us for waiting, or just angry? Will they give themselves permission to feel the myriad of feelings that Kurt and I are experiencing? How will they keep moving forward? How will we facilitate that? What coping strategies will they use to remain 'normal?' Maybe they will share their thoughts with you. I hope that they do... |
AuthorKurt, Margo, Georgia and Spencer share their thoughts about living with and loving someone with brain cancer. Archives
April 2019
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