Be Like Steve.

I am publishing this with the permission of Steve’s wife, who is a brave badass and forever in my heart as are all the melanoma wives.

Steve was a guy I never met, but he changed my life in immeasurable ways for the better. I want to be like him, but I’m not. I’m entirely too selfish and pessimistic, but I hope to raise my son to be like him. 

When Garry got sick and we were in the early “notification phase” we were sent on a collision course to meet Steve.  The “notification phase” is the part where you have to decide who needs to know you have cancer and how much you tell them, and carry the guilt that you have just given someone you love the worst news of their lives. At some point I recall Garry saying, “I can’t keep doing this. I’m tired of hurting people”. We took care of family first and then chipped away at our friends. 

One of Garry’s early conversations was with his friend Jeff. Jeff is a teacher and a summer raft guide like Garry, and we go on family trips with them every summer. Jeff is also a coach. Two weeks prior to Garry’s call, Jeff had taken a similar notification call from his good friend and fellow coach named Steve. Steve had melanoma, the same melanoma. He also had a wife and a baby and one on the way. Jeff quickly connected Garry and Steve. 

At first they text each other, comparing notes on what they understood about their diagnosis and treatment options. Garry was scheduled for a massive surgical lymph node resection that would likely leave him with debilitating edema. Steve had already been to Anschutz in Aurora and was going to start a clinical trial that did not involve surgery. Garry was all on board for that. He didn’t want to lose his mobility. He had always been an athlete, and that defined who he wanted to be as a father. He wanted to teach Bo how to work an oar frame, and snowboard. He had no intention of being a sidelines dad. He told me almost from day one. “If I have to die I want to die snowboarding and rafting.” Mobility is key to my husbands quality of life, and that has driven most of the decisions we’ve made in regards to his treatment. 

I remember eavesdropping on their first conversation on the phone. It wasn’t hard, because Steve was loud and I could hear him pretty clearly. More than his words I remember his tone and his laugh. This guy was a breath of fresh air. He was the sun shining through the storm clouds. He was full of encouragement and grit. At the time, Garry and I were in a very bad place. My dad had died of a lesser form of melanoma not five years earlier. I was a hospice nurse and knew full well what a death sentence this was. We were grim. We were beyond grim. I couldn’t set us right. I tried to be encouraging and hopeful, but we were still listing hopelessly with no shore in sight. Steve’s conversations were like the hand of God reaching down and setting us back on our feet. I felt like Steve’s voice was the one convincing voice that told us to pull our heads out of our asses and get in the game, because we could still win this. Sometimes when you’re at the end of yourself, you need someone else to set your horizon line. Steve did that. Steve was a coach. He was our cancer coach. 

There is something remarkable about a man who can reach out of his crisis to pull you out of yours. Like I said I want to be like Steve, but I am so far from that. Garry and I joke about our level of compassion fatigue. Sometimes I can barely tolerate hearing about other people’s problems, let alone try and put them back on their feet. Steve paused his own crisis and reached out to us, he knew we were in psychologically worse place than he was, and he knew why. Garry had told him about my dad and my work. Steve said, “this is really in your face then”. He acknowledged that we were there and validated the reasons why, but then found a way to  grab us by the hand and pulled us out. He put us on the right road. He was sunshine. He didn’t have to do that. He was fighting for his own life. It’s a hard place to give from, but he gave. He gave abundantly. I will love him forever. It’s a debt I can’t repay. 

Steve died that July. We didn’t go to the service. I had hip surgery and was non weight bearing on crutches so getting around was hard. Plus, I don’t think we could face it. It was so close to home. I’ve always regretted that though. I would have liked to have been there. I would have liked to give thanks for a life well lived. 

I remember asking Garry if Steve had a wife and kids when they were first connected. He said he didn’t know, and I said I wanted him to find out so we could make them our new best friends. He said, “I don’t think they want to hang out with us. I don’t think they are as depressed as we are. I’m not sure we’d be good for them.”  I realized Garry was right. I don’t think we would have been good for them. 

I found out Steve died because of an article in the newspaper about the death of beloved coach. Garry and Steve had text less and less as they started treatment. I think there was apprehension in wanting to know how the other person was doing. Unless they were both responding well it would be hard. For one of them to be successful while the other was not would be hard. I had never known Steve’s last name, so I wasn’t certain it was him, but I was pretty sure. It was a sucker punch. God, I wanted him to beat it. I wanted family barbecues with the two surviving dads and their families. That was the dream. Then I saw the name of Steve’s wife and I realized I knew her.  We had gone to college together. She played basketball and was very good. She was funny and smart and just a solid cool chick. My heart broke for her, and for her babies. It could so easily have been me and my baby. I was scared to tell Garry about Steve. Garry was responding well to treatment, and I was scared this news would have an adverse effect on that. That night I showed him the article. He held the newspaper and sat down hard on our hearth, one hand going to his temple. It was blow. I could see that. He had believed it would be Steve that would fly through treatment and beat this. He looked at me and said, “That was so fast”. I know this beast, and it’s brutal and fast. Steve’s disease course was very normal. Garry is the outlier. 

I won’t speculate on why Garry is here and Steve is not. That is a dangerous exercise in futility and nothing good will come of it. What I do know is Steve was that guy who saved us. Who set us right. I wish I had known him. I wish I could thank him. I will tell my son about him, and try to remember what he did for us, for me. I will try to be like him. I will fall short, but I will try. 

Helping Your Kid Find Resilience and Post Traumatic Growth (PTG) in the Middle of a Shit Storm (at least that’s what I hope we are doing)

Our son, B.D., was six when Garry was diagnosed with cancer. Two months prior to that our eight year old boxer, Dempsey, was also diagnosed with cancer. To be honest if I had the slightest idea Garry would be sick within months I would have gone a very different direction when talking to my kindergartner about his dogs illness and impending death. I’ve been a nurse for over two decades and the vast majority of that time I’ve worked in hospice and palliative care. So, I’m a little aggressive when it comes to conversations about death and dying

Hospice is always palliative care, but palliative care is not always hospice. Palliation is the relief of suffering. All suffering. As a nurse I concentrate on the physical, but true palliative care is comprehensive and covers emotional, spiritual, and so on. Hospice as we know it means end of life. In the true legal sense of the word you are eligible for hospice if your physician can certify that they believe you have six months or less to live. Palliative care, outside of hospice, is not time limited and can and should be accessible to anyone with a chronic or life limiting disease regardless of life expectancy.

This is the world I live in. It’s my profession and my passion. Last I checked the global mortality rate is still 100%, but we all act like its super rare and should only be discussed in whispers. I dated a very sweet guy in college who referred to death as the D-word…. It’s a good thing our relationship didn’t work out. I would have made him incredibly uncomfortable eventually, and although I may have found that immensely enjoyable I doubt he would have.

When Dempsey got sick we had a very direct conversation with B.D. that Dempsey had cancer, the doctors couldn’t fix the cancer, but they could make Dempsey more comfortable and we probably had a few weeks or months before we would have to say goodbye. B.D. appeared to absorbed everything very seriously until we said we would have to say goodbye, and then he looked at us incredulously and said “WHY?”. To which we replied “because he’s going to die”. And that’s when the wailing started… I realized pretty quickly that although he seemed to understand what we were saying he simply didn’t have a real grasp of disease and mortality to connect the dots, and when they were connected for him it was brutal. Not my best work.

That was February. By April we knew Garry had cancer. How do you tell a six year old??? Especially after the traumatizing way we busted out the news about the dog. Dempsey, by the way, was alive and well at this point. Steroids are wonderful drugs and bought us an extra six months with the old bear. They were good months too. He did really well, until he didn’t. I’m actually really proud of how we handled his final days and death with our son, but we can get into that later.

Telling B.D. about Garry. That was impossibly hard. There was no way to do it without showing our own emotion and fear, so we did the best we could. We waited. We waited until we knew how bad the cancer was and until we had a treatment plan, that we ended up scrapping and chose clinical trials instead. But we waited until  were able to say “this is what daddy has and this is what we are doing about it”.

B.D. is little. He was so little in kindergarten, and he sat in Garry’s lap barely visible beyond the giant arms and shoulders wrapped around him.  I could see the trust in B.D.’s eyes and the pain in Garry’s, so I started. We explained that Daddy had cancer, but there was lots the doctors could do, and that the best scientist in the world were working on Daddy’s cancer in labs and hospitals everywhere. It’s not the same as Dempsey or Grandpa Dave. Daddy is not the same. B.D. cried. He didn’t ask a lot of questions. We emphasized how strong Daddy is and what a fighter he is. We told him about people he knew who had survived cancer and we could see him relax. He was quiet the rest of the evening. He didn’t eat much dinner and then he threw up. He’s always had a stress stomach. His stomach was wrecked the whole weekend. I emailed the school and Jiu Jitsu to make sure they knew what was happening at home and could support him. We kept assuring B.D. that we would always let him know what the plan was and that we would tell him if anything changes. I became obsessed with making sure he could trust me. I was worried that soon I might be all he had, and he needed to know I’d be straight with him. No one appreciates a blind side and I needed him to know I’d be honest. I tried to keep things age appropriate, but I know he was the only kid in his class that could tell you what an oncogene was.

I made mistakes that first six months and one of them was putting a premium on Garry and B.D.’s time together. I found myself stepping back and letting their relationship take center stage. I lost time and interaction with both of them that summer, and it wasn’t good. It wasn’t good for Garry and I. Their relationship is important, but I’m part of that relationship.  It was a tactical error on my part. One that I’ve always regretted. There was no permanent damage, but I can’t stress enough the importance of moving together as a family, not as individual relationships. You can not let that family relationship fracture. You can’t. Your intentions may be good, but it’s a dangerous stupid game. Don’t do it.

Garry started his first clinical trial and we knew pretty quickly it was working. We took a four night raft trip on the North Platte and Garry was in his element. Strong and solid. Life was good. We waited for the first scan and it showed improvement on the tumors. They all shrunk, and no new spots appeared. With this disease no growth is a win. Shrinking tumors is amazing. We were teasing out our new normal, because there was no going back. The only way out was through, so through we would go. I wanted B.D. to see Garry in treatment, and meet the doctors and clinical team caring for him. Garry was gifted an Elitches Six Flags pass by his coworkers,  and he and B.D. would go to Denver for treatment every other Friday and then spend the rest of the day at Elitches. That fall B.D. told me “it was the best summer ever”. I disagreed, but I was so pleased that was his experience.

Pro-tip: Life can always be fun. Sometimes “jumping for joy” means you actually need to work for it. It may feel like it’s out of your reach, but jump for it. Get it. Do it for you, and do it for your loved ones.

Midsummer Dempsey started to decline. His mobility decreased and breathing was hard. He dug a hole in the back yard and would go lay in it at night. Garry would carry him inside and lay with him on the floor. Dempsey had been MY dog until I was pregnant with B.D. I spent a few month on bed rest and it was then that Dempsey declared his allegiance to Garry. I had gotten fat and lazy and Dempsey was over it. Garry had his heart now and he never looked back.

Garry was watching his dog die of cancer while battling his own. He kept his heartbreak to himself, but I knew this cut deep and in ways I couldn’t possibly understand. I was at work and Garry called me. I could tell he was holding back tears and he said “Dempsey can’t walk. It’s time.” I grabbed my things and went home.

I found Garry sitting on the floor Dempsey in his lap his breathing labored. Garry looked up at me helplessly. I had called the vet and they knew we’d be coming. B.D. was at the neighbors across the street I told Garry “I want to get B.D. I want him to have a chance to say goodbye”. At the neighbors I dropped down eye level with my son. I said “Dempsey is dying. There isn’t much time. Do you want to say goodbye.”

If you know my son you know he is never in a hurry. He hates to be rushed. The world spins a little slower under his feet. He can spend twenty minutes getting his shoes on, but that day he’s never moved faster. He had his shoes on and was out the door almost before I finished the question. We returned home to Garry and Dempsey still on the floor. Our puppy Rose anxiously pacing around them. I explained to B.D. that we were going to the vet and they would give Dempsey medicine to be comfortable because his body wasn’t helping him any more, and then Dempsey would let go of his body and die. B.D. nodded his understanding and said he wanted to come with us. He stayed in the treatment room with us while they gave Dempsey his sedative, and once Dempsey was sleeping his breathing regular and peaceful B.D. said he was done and wanted to leave. Garry stepped out with our son and I stayed with Dempsey for the final injection. I held him until he was gone. I found the boys outside. I told B.D. how proud I was of him for staying with Dempsey as long as he did, and how brave that was because death is hard, goodbyes are hard, but mostly because he listened to his heart and knew when he was done and needed to leave. I told him most adults don’t know how to do that.

B.D. was only eighteen months old when my dad died, and although they were very close he was much too little to understand death. Dempsey wasn’t the first, but it was the first one my son could process and that was really important to me. This was foundational for how he would process death and dying the rest of his life, and given our circumstances it was really important that we did it right. Everyone should have choices in how they approach the death of a loved one. Control is comfort. Control is safety in the face of something scary. I wanted B.D. to have as much control as possible, and that meant understanding what was happening and being able to decide what he could handle for himself. I didn’t want to deprive him a chance to say goodbye because I thought it would protect him from pain. Studies on children and post traumatic growth show that protecting them from their circumstances inhibits growth. I grew up very protected and not at all prepared for life as an adult, and I’ll be damned before I do that to my son.

A year and a half later, after eighteen months of promising scans, Garry’s tumors started growing. Worse still he had what we call distal mets. That is metastasis or new tumors growing far away from the primary tumor, and it’s a bad sign. We needed a new drug trial and that takes time. We would spend Christmas knowing the cancer was spreading and not actively combating it. It was grim, but we were determined to make it a special time. It was a break from cancer treatment and in some ways Garry felt better. Our son knew what was happening, but we tried to put the best spin on it for him and ourselves. B.D. knew enough to be worried though. He told me one night during prayers that he liked the old treatment and he was scared of the new treatment. We talked about how new things are scary, but how the old thing wasn’t working anymore. We trusted Daddy doctors and knew they had a plan. Again I reassured him that he would always know what was happening and we’d figure things out together, because this is happening to him too and that matters.

Earlier I mentioned that I notified B.D.’s school and Jiu Jitsu gym almost immediately. I knew our son would need a support system outside of us. He was pretty established with the school, but had only just started Jiu Jitsu and we wanted him to stick with it. Physical exercise is so good for coping and mental health. In my twenties I competed in martial arts and I love them. It’s a thinking physical exercise. There’s strategy, there’s defense and offense, and the body mechanics you learn in martial arts translate well into any other sport. Plus you learn to lose and win with grace. You learn to fail and keep trying. You have to get back out on the mat because every time you lose you learn. It’s about bouncing back. It’s resilience, and my kid needed resilience. It’s a life skill that couldn’t wait. They’ve been amazing. The coaches and owners are amazing. B.D. still goes twice a week. It’s consistency and commitment and it’s good for the soul.

As a kindergartener and first grader B.D. told very few friends about his dad’s cancer. I would encourage him to pick friends that felt safe and share with them. I explained how much my friends helped me. I frequently reminded him that cancer isn’t a secret. It’s nothing to be ashamed of and it doesn’t define us. It’s something that happened to us, but it isn’t us. We would talk about how his friends mostly wouldn’t understand what life was like for B.D. and the fears he has, but that many of them understood the concept of uncertainty and may have experienced that in big or small ways. I also brought up that it was a good thing his friends didn’t know what it was like to have a parent with cancer and we hoped they never would. B.D. always agreed with this. Over the past two years he has built a support group of friends who know about Garry, and they share pretty openly with one another. Peers are only going to become more important, and he will need them. I’m glad I pushed. In my exploration of kids and PTG I’ve learned that peer support becomes pivotal to growth especially as he moves closer to his teen years.

Last summer Garry completed a TIL (Tumor Infiltrating Lymphocyte) trial and it meant two weeks in the hospital. He came home home twenty pounds lighter, septic and without an immune system. B.D. given the choice spent most of the time in Denver between the hotel and the hospital. When he’d had enough he asked to go stay at his uncles and we got him there. As the summer faded away, and B.D. was preparing to go back to school he told me he wanted to talk to the school counselor and see if she could help him forget about our summer and what they did to Daddy. I agreed it was hard to watch, but I was so happy we had that opportunity and how it was likely saving Daddy’s life. I suggested that sometimes you can “re-frame” a hard or bad memory and make it a good memory. By Christmas break he was calling the time in the hospital our “Denver vacation”. He re-framed the memory into something fun.

When it’s all said and done, B.D. is much better at this than I am. In no way will that trial ever be a vacation for me. Nor will that first summer after diagnosis be “the best summer ever”. All of it has tested me, and overall I’m proud of what we’ve done as a family. I think I would be proud of that even if we didn’t have the good outcome we are enjoying now. As I see my son thriving, I find I worry about myself. Have I grown? I have over-functioned. I love to over-function in a crisis, but I know it’s not sustainable. Garry got cancer and I handled it by losing 20 lbs, going back to school, changing the course of my career, and starting a blog. I’ve watched my son honor his sadness and grow from it. I have two gym memberships and very nearly have my masters degree, but have I grown? Is it durable? Is this all borrowed and I haven’t really done the work? When school is over and we are living life, real life, not scan to scan life, I think my kid will be ok, but will I? As parents we teach by example and although I do think I’ve given him the best tools I could, have I lead by example? I don’t know, and that’s hard.