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.

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. 

Love is White

I can’t remember the last time I visited my dad’s grave. I used to go religiously on holidays and his birthday. I would tell him all the news of my life, and the ways BD was growing and changing. I used to feel his presence there, but that faded overtime. At some point I knew he wasn’t there, and my visits declined. Plus, I read a terrifying statistic about women being sexually assaulted while alone in a cemetery. I told myself I’d get over my fear of guns and get one. Then I’d go back to regular cemetery visits while packing heat. I’m still scared of guns and still don’t have one. Additionally, life has been busy, and cemetery visits have been the last thing on my mind. 

Last night I had dinner with an old friend from highschool. I met her my senior year, and first year back in public school since the second grade. I was a senior and she was a sophomore. We took speech class together. On the first day of school we had to answer a bunch of questions as an ice breaker. One of the questions asked what “what color is love?”. She and I were the only ones that answered with the color white. We were friends instantly. To this day she’s one of the people I love, respect and admire most. 

We spent the evening catching up on my marriage, her recent divorce, and how we are surviving everything while trying to navigate the complications of a life we never expected to face. We compared notes on how to make good humans out of our children. She grew up without a dad, and mine died in 2011, so we talked about our moms and their politics. Somehow the conversation wound its way to my dad. She said he was wonderful, and recalled how gentle he was and how rational. He was always the voice of reason. When friends who knew him remind me of who he was it fills me a warmth I can’t explain. It makes my memories real again. I’ve come to doubt a great deal of my memories for a lot of reasons. Confirmation of how I recall him is very comforting. 

We had dinner in Old Town and the cemetery was on my way home. I wasn’t in a rush for once. I love that cemetery. It’s old and has lots of big trees. Often I see deer there. My dad is buried under a twisted pine tree that sheds all over the stone bench marking his grave. I used to bring flowers for him and apples for the deer, but last night I came empty handed. I hoped to see deer, but it was just me the tombstones and the mosquitoes. The evening was warm and the sun was low over the mountains. It was quiet and pretty, but it didn’t take long until the mosquitoes got the best of me. I got in the car and as I drove away a thought hit me. It was light at first, but the weight of it grew until I felt it push the air from my lungs, and the tears from my eyes. When dad died, I lost my softest place to fall. I realized I’ve been free falling for three years. In that moment I desperately wanted my dad to catch me, and I let myself slide into the misery of it all.  I’ve needed to have a good cry for a while. It’s been creeping up on me, and I’ve ignored it. I’ve escaped the tears through the protection of a busy life. Last night it wouldn’t be ignored anymore and I guess that’s okay, I’ve earned it. 

I didn’t know it growing up but my dad understood suffering in a way most of us never will. He was not a perfect man, but he was the perfect father for me. He was exactly the daddy I needed. He was everything I’m not and everything I wish I was. He was a listener more than a speaker, but when he spoke his words were measured and thoughtful and full of wisdom. His words carried a weight mine never will. His eyes were bright blue like my brothers, deep ocean pools. Mine are blue grey like my mother, but I have his smile. He was consistent and fair. He considered the position and intentions of everyone and encouraged me to do the same. He was a brilliant introvert. He loved a good story and books were his oldest friends. Profoundly slow to anger he would raise his voice once every five years. If he raised it at you it was terrifying, but only because it was so rare. He was gentle, and loving, and kind. I always knew my brother and I were his greatest joy. I knew he was proud of us. He was the person in life that I felt I understood most and was the most understood by. 

In many ways I believe he gave me all the tools I needed to navigate his death and life without him. I often know exactly what he would say if he were here, and I were to go to him for advice. I can still hear his voice in my head, but my heart longs to be a little girl again with physical access to him. I loved the comfort of being in his office, back when he smoked a pipe. Vanilla pipe tobacco is still my favorite smell in the world. I love bookshelves full of law books. I can remember the feel of their spines as I’d run my finger tips along them. My bare legs sticking to his overstuffed leather chairs on summer days. To this day I’m freakishly comfortable in an attorney’s office. I haven’t had many reasons to be in one as an adult, but when I am I don’t want to leave. 

When I was in college, my dad told me he didn’t worry about me. He said he knew I would always be ok. I would always find a way, and I’d always be happy. So he didn’t worry. In many ways he was right. I will always find a way, and I’ll be damned before I live a life in misery. I still believe that love is white. It’s pure, utterly without an agenda, and full of hope. Like the love of a father for his daughter. Grief is a funny little beast. It sneaks up so unexpectedly as if time and distance from the loss didn’t exist. It’s a jerk that way, but it often brings gifts if you are willing to really look it in the face. Sometimes grief brings comfort. Sometimes it has to bitch slap you in a cemetery to do it, but it’s worth it.  Go to the cemetery, and remember that love is white.