Moving Day

I wrote this a while ago and have sat on it for a lot of reasons. Number 1 the way I cope and the way Garry copes are very different. He wants privacy and I need to share everything. It’s a tricky balance between me feeling muzzled and isolated to him feeling exposed. But also, because I’m not very proud of myself for this one. I’m sad and a little ashamed. However a dear male friend of mine recently told me that he has always loved and respected my vulnerability. He encouraged me to never stop practicing vulnerability. Also, I started this blog for two reasons. It’s cathartic for me, but I also hope to give voice to things other people are experiencing. I had a really hard time finding resources that were relatable when Garry got sick. They all seemed very sterile and PC. Not my style. Life with cancer is a lot uglier than that. I’m uglier than that.

We’ve all experienced a moment when someone’s words force you to look at who you are. It’s as if they made you look in a mirror. Sometimes you like what you see and sometimes you don’t, but I’m getting ahead of myself. Let me back up a little.

Recently, I diagnosed Garry and myself with post cancer stress disorder. Granted it’s not a real diagnosis and diagnosing is outside of my scope of practice.  BUT the fact remains that we both freak out about things that never would have bothered us before. You know about my risk aversion. I am terrified of anyone I love or even myself getting hurt. Garry’s stress is more psychological and insidious, and I haven’t always alleviated it. In many ways I’ve compounded it.

When Garry was diagnosed I remember having the surreal thought of “So, this is what will make me a widow”. Slowly but surely I psychologically moved into what I call “the widows waiting room”. I knew I might be able to leave the widows waiting room by the same door I entered, but I also knew I was likely to have to pass through the other door, the door that leads to widowhood. I became obsessed with widows in my life. I watched them like a stalker. I wanted to know how they stayed strong, what got them through, and more importantly how were their kids coping? I obsessed on them and I made my peace with becoming one of them. What I saw was encouraging. These women were so strong and brave and kept putting one foot in front of the other, for their children if not themselves. It gave me comfort that I could walk that road too, if I had to. But Garry didn’t die. The cancer died. He’s here today with no evidence of disease, and I’m still living in a widow’s waiting room. I’m scared to move out. I’m not sure I know how, and I don’t really remember what life was like outside of this room.

Garry has been well for the better part of the last year, and I have very consciously decided to stay in the widows waiting room. I thought I could stay here and no one would notice, except maybe my closest friends. I know it’s counter intuitive. I know it seems like a place I should run from at the first sign of an opening, but it’s not that simple. Being plucked from my happy normal life and dropped in the widow’s waiting room was more painful than I can explain, but I’ve gotten used to being here. I’ve gotten used to pondering and preparing for all the bad things. I’m afraid to leave, because what if I have to come back? In my mind it made more sense to stay than to face the pain of leaving only to be forced back months or years from now. Staying in this room, in this psychological place, was purely for my protection. It was my way of buffering a potential fall. It is a way to anesthetize my life.

Kate Bowler, author of Everything Happens for a Reason and Other Lies I’ve Loved, writes about the realization that her cancer was the most painful thing that happened to those she loved the most. She goes so far as to say that she is the worst thing that’s ever happened to them. No one thinks that when they look at a sick loved one, but the sick person feels responsible for the pain they cause however out of their control it is. Cancer gives everything an edge. Even love and joy will cut you, because you know they may not last. Loving a person with a life limiting illness hurts, and it probably hurts them even more to love you back. You are potentially saying goodbye to them. They are potentially saying goodbye to everyone, even their children.

It is normal to start grieving someone before they die. It’s called early bereavement. There are counselors who specialize in this. I’d be lying if I said I hadn’t started grieving Garry’s potential death years ago. I probably started grieving him almost as soon as we had a diagnosis. It hurts. It will wreck you. When you suffer from a prolonged pain, physical or mental, you will eventually find ways to numb it. For me it was tasks. I stayed busy. I planned and worked towards making life easier if BD and I were to become a family of two. It numbed the pain. It was progress and motion and it gave me a sense of control. I got used to this life. I found other ways to cope that included distancing myself emotionally from Garry, and it became my normal, semi-comfortable life. I didn’t do it on purpose or plan it, but I did distance myself from him.

I’ve been in countless people’s homes throughout the end stage disease and dying process. It’s really common for people to disengage as they near death. I always assumed it was to help them leave this world. Disengagement was a means of softening the forever goodbye. Without intending to or even realizing it, I was disengaging for my own self-preservation. When Garry got well, I didn’t know how to let those coping mechanisms go. I didn’t want to. I felt like this continued state of being would protect me and keep me safe knowing the potential for the cancer to return. I had this illusion that I could secretly stay in the widow’s waiting room and Garry wouldn’t notice.

A few weeks ago we ran into a friend who is a breast cancer survivor. Like Garry, she is currently doing well and has no evidence of disease.  They started chatting about their current state and treatments or lack thereof. The conversation then shifted to how their marriages have evolved in the face of cancer.  They both acknowledged their awareness that their spouses were preparing for their death, and acknowledged that as painful as it was watching us plan a life without them, we needed to do that.  Then she said that thing. That thing that made me cringe, and feel so small, and ugly, and sad. She said, “Okay, so it looks like I’m going to be here, so you can come back to me now”. Garry didn’t say anything verbally but his body language showed absolute alignment and understanding with her statement. None of this was directed at me. It was a conversation between the two of them, and I was mostly standing to the side. It was, however, a bitch slap I needed and deserved. I know that was not her intention. She is very kind and thoughtful and I have a great deal of respect for her, and I think that is why her words carried weight with me. 

I’ve sat with that for the last two weeks. I’ve tried to justify staying in the widows waiting room, because “what if”. I even wrote his Oncologist and let her know where I am at emotionally. I asked if I’m being pessimistic/crazy. I told her, I’m stuck and I don’t know how to move on. She wrote me back within hours because she’s a brilliant physician and an even better human. She told me I wasn’t pessimistic, and that the cancer could come back, but then she gave me all the reasons to have hope. I can’t really explain how, but she kind of opened the door for me. It was probably a door that only she could open.

For the first time I started asking myself if I’d regret staying in the widow’s waiting room. It wasn’t about safety for me anymore. It was about regret, and I would regret staying here. I would regret it profoundly.  I don’t care if Garry has months or decades left. I don’t want to spend them in here anymore. I want to go home. It’s moving day. I need to pack my shit and go home. All of me, with nothing held back. I can take the hit of bad news down the road. I’m well-conditioned to take that hit, but I may not have to, and time in the widows waiting room with a healthy husband waiting for me is wasted time. I don’t want an anesthetized life. I don’t want a life of regret. I want a life of deep connection with the man I chose, and would choose again.

Love Letter

Love and acceptance are not the same thing. We can all think of people we love who have things in their lives that we can’t accept. Transversely we can all think of people who we know love us, but we also know they do not wholly accept us. Both relationships hurt. But what’s worse is when we do that to ourselves. We’ve all wexperienced looking in the mirror and not accepting the person looking back at you. When that’s the case it bleeds into all of your other relationships. These waves of love and acceptance travel with us through our families of origin, our friendships, marriages and relationships with our own children. Some of it is defined by our beliefs, but it can all be altered by life experiences and circumstances.

Today is my twelfth anniversary and I want to take a moment to immortalize my love and acceptance of Garry publically. He will hate this, but public praise is my love language and he needs to accept it. See what I did there.

My Love, 

Fallin in love is so fun. There is nothing like it, and falling in love with you was amazing. I had a feeling it was the last time I’d fall in love, and I was okay with that. You were so kind to me. You were interested in everything I said and did, but more than anything you made me feel safe. I was safe with you, body, soul and mind. You were my shelter. It was the most mutual relationship I had ever had.

The best relationship advice I’d ever received was from the husband of one of my hospice patients. He was a little gruf and called me Peach, because according to him “as far as nurses go, you’re a peach”. He told me, “50/50 relationships are bullshit. You give 100% and find someone who will give you 100% and that’s the only way marriage can work.” It didn’t take me long to figure you out, you’d give us 100%. 

Beyond that you are funny. I’ve always been a sucker for a guy that can make me laugh and tell a good story. The fact that a solid half of your story’s started with “So, I was drunk and naked”, made you irresistible. You are my favorite travel partner, and I love sharing this world with you, especially when we are drunk and naked.

You have a keen sense of fun and adventure tempered with a grounded thoughtfulness and stability. You are my match. You are the earth to my sky, and the ice to my fire. I love discussing politics and religion with you, even if we have different political affiliations and faith backgrounds. We have very different parenting styles but BD needs us both. He thrives when you challenge him, because he knows he can always crash and burn in the softness of mom. We are very good parents and I’m so proud of the work we do with our son. 

We have our failings of course. We can’t move a piece of furniture without arguing. We are often better at dividing and conquering than trying to work on a single project together. You are fiercely protective of your privacy and I don’t believe that too much information is a thing. I also lack the capacity to keep a secret, especially my own. 

We’ve had a lot of loss in our marriage, two dogs, grandparents, my dad, and a baby we never got to hold. You were my rock through two terrifying pregnancies and the joy of our only child. You took care of me in multiple orthopedic surgeries and a demon possessed gallbladder. Being a caregiver is not your favorite thing, but you’ve done a good job. 

Recently you told me, “I’m not the man you married”, and you’re not. You’re better.  You’re refined by fire. You are a polished river rock. Since your cancer we’ve done our best work as a couple, and we’ve done our worst. We’ve come very close to each other and at times very far away. Through it all the love has remained. Love is the easy part.  Accepting ourselves and each other as cancer has molded us and changed us is hard work. Luckily, you’ve never been afraid of hard work. Especially when that hard work is me. 

We are not the same, but I still choose you. You are still my match. You still make me laugh and tell great stories. You remain my rock. We have both been broken and mended over the years. I’m in awe of the battle you’ve fought and continue to fight. I’m in awe of the community you’ve built around you, the friendships you build and maintain. 

I have had to imagine a world without you, and it terrifies me. You are my best friend. You are my safe place. When I chose my husband I did a really good job. You are my best decision. Making a baby with you is the only thing that equals it. I love you. I accept you, all of you. You’re beautiful to me. Never leave me. Never leave me.

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.