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.

I want the magic pill too, but…

I want to say this gently, because I’m going to be talking about acts of kindness by people who love us or at least care about us. We live in a culture of fixers. We like to fix things and that’s hard to do when the problem is complex and not something you can wrap your hands around. In those cases we give advice, lots of advice.

We all have bodies and they fail at one time or another. Sometimes they downright betray us. It’s hard to watch this happen to someone you care about. It’s hard to feel helpless. Almost from the time we met Garry heard me complain about the goofy things people say to you in a crisis. I would always tell him “you can’t go wrong with a hug and saying I’m sorry”. So, when my dad died I got a lot of hugs and whispers of “I’m sorry”. I think he was scared to say or do anything else. I regretted painting him into a corner when it came to addressing my loss. He was one of the few people who probably could have said anything and it would have been right, because I know his mind and his heart.

At risk of painting people into a new corner I want to talk about the advice we give when someone is sick. I’m not talking about the compulsion we have to God-splain suffering to those who suffer (that’s another post for another day). I’m talking about the tangibles. The dietary recommendations, the supplements, and the exciting new world of legalized marijuana. I will probably get under some people’s skin, because there is a weird tendency to get down right evangelical about your diet, supplements and THC/CBD. I can appreciate this, when you feel something has improved your life you want to share it. I’ve been a pusher of acupuncture and essential oils for the same reasons. I’m not judging anyone. I forfeit that right a long time ago. I’m simply introducing some considerations and guidelines for recommending complementary treatments to the ill.  

Because words matter I’m going to introduce some definitions to keep us all on the same page.

Cancer: We think of this as one disease, and it’s not. It’s a multitude of diseases. The type, stage, location and genetics of the cancer have their own complexities and greatly affect treatments and outcomes.

Cure: to destroy the illness completely to the point of no return. It’s gone. Over. Dunzo.

Hypercoagulation: Forms clots faster and more often than one should in locations you don’t want clots, like within the blood vessels and organs of your body. It can kill you.

Palliation: to ease suffering or manage symptoms. Not a cure.

Poly pharmaceutical: heaping wads of prescription drugs.

Let’s start with supplements. I feel I should disclose that I have a fairly adversarial relationship with supplements. I do take supplements, but back up their use with either physician recommendation, peer reviewed studies or professional journal articles. I believe the supplement industry is the modern day version of the traveling snake oil salesman. Of all U.S. industries, it is the ripest for grifters, frauds, charlatans and swindlers. The industry is very nearly unregulated, they make too good to be true promises, and have an impressive retail markup.  Yet the industry is booming. The placebo effect and magical thinking are also very much alive and well. Almost every study in recent history finds that supplements either do nothing or cause harm. I’m not saying they don’t have their place and there aren’t some good players out there. I’m saying eat a balanced diet, be active, and get a little sunshine without the burn every now and then. It will save you money and you’ll have better results.

My greatest concern when it comes to supplements and the chronically ill is drug interactions. Here’s the thing, supplements can and will affect important functions like clotting and hormone production. People think they are either a miracle drug or relatively benign, but when mixed with some pharmaceuticals or disease processes they can be dangerous. There are also limitations on studies of supplements and drug interactions. There is a lot we don’t know. If you have a chronic illness you are likely on poly pharmaceuticals. Starting a supplement regime in addition to your prescriptions could adversely affect you, and/or counteract the care plan of your medical doctor. I know an 18 year old employee at a health food store can sound impressive, but did you give good advice when you were 18??? Why are you listening to the 18 year old in an apron? Listen to your MD! They may recommend some adjunctive supplements but please don’t go crazy on your own without consulting them.

We have a very well meaning family member who is also what I refer to as a supplement abuser. She has brought me supplements that increase the risk of miscarriages when I was pregnant, and recommended supplements for clotting disorders that are actually contraindicated and lead to an increase in stroke for patients that hypercoagulate. If you have a regime that you swear by, I kindly ask that unless you’re a physician or pharmacist, try not to recommend them to your friends and family when you don’t know their health history or current medications and treatments.  Above all else when you Google or Bing or whatever please add “study” or “professional journal article” to the end of your search terms. There is so much anecdotal bullshit out there you can get lost in it. Also, never trust the articles in the free magazine at the entryway of your health food store. Just don’t.

You are what you eat, and I’m fried, crispy, salty, and juicy sweet. But seriously, I find diet is a hugely important player when it comes to decreasing your symptom burden in chronic and acute illness. The diet you should be on can vary dramatically depending on the disease. When Garry was diagnosed with cancer he had been Paleo for five years. Five long horribly boring to the pallet years. The Paleo and Keto diets have been well studied and we actually know a great deal about the way they affect a person’s body, or rodents body (according to the literature there are massive amounts of keto rodents living in labs). The keto diet is known to decrease inflammation, can starve cancer tumors and even assist in tumor regression with the exception of two cancers. The Keto diet leads to an increase in breast cancer recurrence because of its high fat content, and it actually causes tumor growth in melanoma tumors. The mechanism of the tumor growth is continuing to be studied, but they think it has some genetic component. For breast cancer and melanoma they recommend the Mediterranean diet with low fat and healthy grains.

Like I said in my definitions, cancer is not one disease. Cancer is Legion. Each disease responds differently to its environment. Yes, cancer loves sugar, but not all rules can apply to all cancers. Depriving cancer of sugar may slow it down, but it is resilient and adaptable. It will eventually find another food source. Most oncology, diabetic, and cardiac clinics provide dietary counseling. If you are ever in need of any of these services please also meet with a dietician. There is a lot of wonderful research out there with very exciting results that not only improve quantity of life, but improve quality. Let someone qualified lead you to the right choices for you. Anything that universally reports to cure or fight cancer should be suspect, because no two cancers are the same, and no diet or drug can make a universal claim like that.

The legalization of marijuana is exciting to me as a clinician. I have never personally been a user either for recreational or medical reasons. Well, that is not entirely true, I did use a cosmetic night cream that had CBD in it, and I thought it was great. My experience with all things marijuana is mostly laughing at the bone-headed things potheads say, and being amazed by the comfort and relief it has brought my hospice patients over the years. I’ve had patients who utilized marijuana to manage their end of life symptoms long before it was legal. I’ve seen it relieve nausea, increase appetite, decrease anxiety and ease pain. At the time there was very little data to support what I saw, because it wasn’t entirely legal to study outside of a handful of cohort studies. So, my experience was just more anecdotal bullshit.

Today the data is rolling in hot and fast and generally supports all the anecdotal bullshit of my early career. We all have cannabinoid receptors in our bodies. We are designed to receive and process cannabinoids just like we are with opioids. The main difference between the two is where the receptors live. Unlike opioid receptors you do not have cannabinoid receptors in the part of your brain that can make you stop breathing and die. This is an obvious benefit to cannabinoids over opioids, however nothing is without its risks and those risks should always be weighed against the benefit.

CBD and THC are the two components of marijuana most often manufactured and marketed. THC is the psychoactive component and CBD is non-psychoactive. In other words THC will get you high and CBD won’t. In fact, in some studies CBD actually balances the psychoactive traits of THC. There are multiple other chemical components found in marijuana that have not been studied independently and we may find other benefits in the future. On the whole, if you were my patient and were not concerned about THC I would recommend straight up smoking marijuana the old fashioned way. If my anecdotal bullshit experience means anything, I have found that patients have greater relief when they smoke. Theoretically the plant works best as a whole. What we do know is that smoking bypasses the stomach and the user has a rapid feedback method to more safely adjust dosing. Although a large dose of marijuana won’t depress your respiratory system, it does have adverse effects. Police officers and emergency department employees can tell you all about them. When using the edibles you won’t feel the effects as rapidly, and sometimes people keep taking more because they think its not working, only to go bat-shit crazy when it finally peaks in their bloodstream.  Keep in mind, my patients were hospice patients, and the risk benefit model is different in those cases. If you are or intend to use medical marijuana talk to your physician, I am not a physician, and I have no idea what your medical history or needs are.

Cannabinoids provide a type of neuro protection that makes them ideal for affecting conditions of the nervous system such as anxiety, sleep deprivation, pain, and even seizures and some types of brain tumors. We’ve all heard the stories about children with seizure disorders finding relief through medical marijuana. The evidence supports that this is not a placebo or crazy hippy parent thing. However, the utilization of medical marijuana for pediatric seizures has not been embraced by pediatric medical societies because of marijuana’s adverse effects on brain development. I have never met a physician who recommended marijuana use until after the age of 26 when your brain is fully developed. Before we go all judgy-parent on those who use marijuana on children let’s consider the fact that seizures aren’t good for brain development either. Plus if you have ever watched anyone have a seizure it’s about the most helpless feeling you can have. I can’t imaging watching my child go through that once let alone on a daily basis.

Cannabinoids can stabilize or even decrease the growth of some cancer tumors such as neurologic cancers, but they tend to increase growth in others specifically cancers of the male sex organs. I have found absolutely no evidence that cannabinoids have cured any cancer. Inhibiting growth is not a cure. It may prolong life and improve quality, but it’s not a cure.  In fact, it remains illegal to market cannabinoids as a cure for cancer, because they’re not, and although they may inhibit one type of cancer, they may also promote another, and the average consumer does not know the difference. Please don’t perpetuate the claim that they cure cancer. It’s dangerous and irresponsible.

Cannabinoids are wonderful in the palliation of cancer symptoms. They work both as a pain reliever and an anti inflammatory. They can increase appetite which can prolong life and add quality, because food is part of quality life. Anxiety and nausea are worse than pain in my mind. Cannabinoids are shown to decrease both of these symptoms. Another debilitating symptom is sleeplessness. I am a sleeper. I can sleep through anything especially stress, but I am aware that I am often sleeping soundly next to a guy that is wide awake and probably resenting my slumber. Cannabinoids can help adjust sleep cycles which will decrease stress, increase coping, and all the other wonderful things that go with a good night’s sleep. Including not hating the person sleeping next to you because they are sleeping.

My primary concern with promoting marijuana in cancer and cardiac patients is that CBD can potentiate the action of blood thinners. So, if you are already on coumadin or xarelto or even taking aspirin or ibuprofen, CBD can increase the thinness of your blood. Thinner blood means a decreased ability to clot and an increased risk of stroke. I’m not a giant fan of having my husband beat cancer only to have a stroke or internal bleeding or any other such tragic end.

As unpopular as it is, I am a giant fan of big pharma. I know they have been very bad lately. Very very bad, and they should be punished. The price of insulin is a dick move. There’s no two ways about it. It’s a dick move. However, there needs to be some shared accountability for that. For one thing the fuck-nuts we’ve elected have some political responsibility to sort this mess of a medical system, and stop benefiting from it. But please don’t throw the baby out with the bath water. Big pharma and the fuck-nuts also brought us some amazing miracles. I sleep next to one every night. Good dads don’t grow on trees, and my kid has one. Big pharma let us keep him. If it weren’t for big pharma Fathers Day would suck around here. So at the end of the day, I appreciate all the advice. I know it comes from a kind and hopeful place, but if we don’t do the thing that you believe will save us, it’s probably because we trust the science behind big pharma and the fuck-nuts more than you…. But (for what it’s worth) we are grateful you put yourself out there and took the time to speak up with care. We love you and hope you have a great fathers day! We will be enjoying the gift of another year with our big pharma miracle.


This piece may sound grim and imply that we are still in the thick of it. We aren’t. We are moving to a place of health and trying not to look over our shoulders too much. My hope is that our process can help someone else, and it also helps me evaluate where I’ve been and where I’m headed. Transitions are hard. Letting go of dynamics that have served you well in the crisis but might be detrimental now that it’s over is not an easy trick. We are all students. I’m learning too.

Analogy has always informed the way I view the world and life with cancer is no different. The best way I can describe how my family lives with cancer is with the analogy of a house. Very early on Garry built us a house of cure. He needed to live in a house of cure, and he quickly laid the foundation for it. BD and I moved right in and that is where we live. Life happens in the house of cure. But within the house we each have a private secret room of our own. I call them the “what if” rooms.

All the hard work happens in our “what if” rooms, but they can be dangerous places. It’s where I have to contemplate the potential of life without Garry. How will I get BD through it? How will I help him with his math homework and teach him to drive, when I’m no good at either? I’m really good at taking care of a little boy, but I don’t know how to raise a man. What will Garry need if his body fails him? If he can’t mind over matter it anymore. Will he ever forgive himself if he reaches the point that his mind doesn’t matter because his body can’t help him. I don’t think he will. I think he will always see it as a failure, as a frailty. How do I support him and bring him peace if he has the impossible task of saying goodbye the to the life he wants with us? These are my “what if’s”. This is the work I do in my “what if” room.

After his diagnosis it took me a solid nine months of focusing on tasks and what Garry and BD would need before it dawned on me that I could lose my best friend. He’s my best friend and he’s fighting the beast that killed my dad. I sit with that in my “what if” room, and I want to vomit. I think about what it means to be a widow. I write his eulogy in my mind and it doesn’t begin to honor him, so I rewrite again and again and I still hate it. I think of ways to keep him alive for BD and our grandchildren, and myself.

Please, don’t misunderstand. I don’t plan on him dying. We live in the house of cure, because we want him to live. The plan is that he lives. Our intention is for him to live, but I have to be prepared for him not to. BD will need me prepared. Garry will need me to be prepared.  I can’t afford a blindside, and I know this beast. I’ve watched it kill throughout my hospice career and then personally with my dad. I know this beast. It’s this familiarity that built my “what if” room. Maybe if I didn’t know what we were facing I wouldn’t have such a robust “what if” room. When my dad was sick he liked to say that if he never went to the doctor he’d either be happy or dead. I never liked that philosophy. I don’t care how ugly the truth is. I can’t affect what I don’t know. I’m getting good at doing hard things, but it helps to see them coming.

This is what makes me a paranoid optimist. I am in a constant state of failure planning. I realize that sounds pessimistic, but it’s really not.  I have a goal, an outcome, a mission, and failure planning will get me there. There is a lot in life you don’t control. You can’t build your plan on around uncontrollables. A failure plan helps me focus on what I can control when the uncontrollables kick in. I do believe I can affect enough opportunities in life that I have the ability to reach a positive outcome, or not (it’s a choice). It may not be pretty or exactly what I had hoped for, but things can always be awesome again. I do have enough at my disposal to impact how quickly I get back to awesome, and that is why I failure plan, all the time, everyday, because things happen. In many ways my “what if” room is my war room.

BD has a “what if” room as well. I don’t think he spends too much time there, especially not lately. I like to think he invites me in most of the time, but I’m not sure about that. His “what if” room is a place of quiet contemplation where he honors his sadness, but only briefly. I hope. He was six years old when his dad was diagnosed and that summer our dog died of cancer. One Saturday Garry had volunteered to take kids with life limiting illnesses rafting (I love this because he was probably the sickest person on the boat and no one knew it). BD and I were home alone. I was watching TV and he was playing at his Lego table. He suddenly turned to me with eyes full of tears and said “Mommy, if Daddy dies this is how it will always be. It will just be us.” I said, “come here baby” and opened my arms, but he didn’t come. He shook his head and turned back around to his Lego’s. He will sometimes mention how sick daddy is and the “what if’s” that circulate in his head, but he quickly follows it with “I don’t want to talk about this anymore” and moves on. We’ve never made him any promises that we can’t keep. I feel like the best thing I can do is ensure he has the information he needs and the reassurance that dad and I will make sure he is ok. No matter what. That’s our number one job. I think he knows I’m his soft place to fall too. I will catch him. I will carry him. If I can give him anything to take with him into his “what if” room, I hope it’s the knowledge that I will tell him the truth and be a safe place.

Honestly, BD’s “what if” room is an easy place for me to navigate. Experience builds empathy and his “what if” room is not that dissimilar to mine. Additionally, although I was in my thirties when my dad was diagnosed, I do know what it’s like to have a dad with cancer. I know what it’s like to have a dad with very nearly the same cancer. The problem for me was being a hospice nurse with a lot more skepticism and first hand knowledge of disease and death and dying. BD doesn’t have that, and he has a stronger dad fighting the disease. He also has better medical and scientific methods to fight than my dad did. BD’s “what if” room is hopefully the least used one in the house. I hope it’s more of a dusty closet he frequently forgets about.  When he runs across it he briefly pops his head in just to see if anything has changed.

My husband has a “what if” room as well. This is the scariest “what if” room. It’s the worst “what if” room. I hope it’s not the most frequently used “what if” room, but I suspect it is. His room is vastly different than ours because his worst case scenario is not the same as ours. In a worst case scenario, we will still be here. He will not. They are both variations of hell, but they are not the same hell. To be honest I try very hard not to consider the “what ifs” from his perspective. It’s too hard. It hurts too much. There are too many things we don’t know about what is beyond us, and there is so much we have planned in this world. Together. With our son. People like to remind me that “our God is a God of restoration”, to which I reply “I want the God of keeping what I have”. It’s true. I don’t want restoration. I want what I have. However, if I’m a widow I will keep much of what I have of what I know and brings me comfort. When you are the one leaving you don’t take anything with you except hopefully the love and wisdom of the life you left. Cancer is already isolating, and I worry about anyone facing these “what ifs” alone. I find there are very few people willing to take a walk on the dark side with me, and there are even fewer probably willing to walk with him.

As spouses we don’t often share our “what ifs” with each other for all the right reasons. We want to protect each other. We know the other person is hurting and we don’t want to burden them with additional pain. It feels loving to keep them out of your “what if” room, but I don’t think it is. It shuts down communication when you need it most. However, like all things under pressure sometimes “what ifs” escape their rooms and explode out on the other person. It’s not fun. It strips you down and makes you vulnerable. It’s incredibly uncomfortable, but it’s also healing and validating and can turn into a place of love and growth.

There are people that I do freely let into my “what ifs”. I’m grateful for those willing to explore the darkness with me. I was surprised by who in my life has been willing and who ran for the hills. I don’t judge them. If you can’t do it, you can’t. You won’t do anyone any favors if you pretend you will be all in and then have to retreat. But if you have capacity for it, and are ever asked to take a stroll in the valley of the shadow of death. I hope you do it. It’s an honor to be invited in someones “what if” room. It’s messy and ugly, but so is life, and if you can be the source of light in a dark place, you should.

Why Technology Should Honor the Sabbath, and Other Wack-a-doodle Things You Learn at Christian School

When my brother was in third grade he was sent home with a homework assignment to look up his horoscope, and that was the end of our lives at public school. Well, not the end because we both graduated from public school, but it ended my life in public school until my senior year. I know you’re wondering why looking up your horoscope would lead to all of this. Let me explain it with a little Bible story.

Once upon a time there was a Hebrew king named Saul. The Hebrews were at war with a tribe called the Philistine. King Saul was freaking out because Samuel, his prophet and chief advisor, was dead.  Saul tried to go directly to God himself for advice, but God was silent. So Saul asked the other Hebrew prophets who also came up with nothing. Previously, Saul had removed/killed all the mediums and magicians in the land, because they counted on sources other than God for their power. However, the Philistines were badass and Saul was terrified, so he asked his buddies to find a medium to advise him. His servant told him about a medium from Endor. I really want it to be the same Endor that the Ewoks are from, but I’m pretty sure it’s just some town. Anyway, Saul and his buddies disguised themselves because they knew this woman wouldn’t meet with Saul if she knew who he was. As it was, she was skeptical and refused to conjure anything for them because Saul had killed all the other mediums. They finally convinced her and she conjured up the spirit of the recently deceased Samuel. Apparently, she didn’t know that was who she was conjuring, because as soon as she realized she had conjured Samuel she figured out the guy in disguise was Saul and freaked out herself. The spirit of Samuel was not thrilled about his conjuring either, and reminded Saul that he had already prophesied that all of this would happen, because Saul never obeyed God and God was dunzo. Samuel told the Saul that the Philistines would kick ass the next day and Saul would die, and he did. And that is why you do not look up your horoscope.

I was eight years old and this was the explanation my mom gave for moving us to private school. I was sad about leaving my friends at public school but grateful my mom had rescued my brother and I from certain death by Philistine. My brother was devastated we had to switch schools and has never forgiven the Witch of Endor. To this day I rarely look up my horoscope and when I do I have anxiety about it. I was scared to read the Harry Potter books too, but they are amazing and I think Jesus would approve. Of note, we never had any problems with fortune cookies when I was growing up, so the moratorium on fortune telling was not consistent.

Within my first month at Christian school I made a huge mistake when answering the “what did you do last summer?” question. Much to my fathers chagrin, my uncle had taken us on a tour of nude beaches in Northern California. As an eight year old there was nothing sexual about it, but there was a great deal of hilarity to it. To be honest, in my forties I’m more likely to find a skinny, hairy, naked hippy running and jumping to catch a frisbee way more funny than sexy, so I’m not sure my perception of that summer would have changed much. My former boss once described me as “verbally graphic”. I suspect that day in my third grade classroom I may have shown some early verbally graphic enthusiasm as I explained what I did that summer. At some point I realized I was the only one laughing. I remember the saucer sized eyes of my fellow students staring back at me, and then I saw the rage on my teachers face. I remember her pointing her finger at me and yelling “You’re a liar. You made that up. Confess your sin.” I dropped my butt back in my desk, put my head down and started sobbing as any confused child would have done. My teacher responded by grabbing my wrist and pulling me back to my feet. I recall my hips hitting the desk as she stood me up. I also remember her nails digging in to my wrist. My response was to promptly become a liar by “admitting” that I was a liar who made up my family vacation at the nude beaches, and apologized to the class. I also spent the next recess ironically writing the sentence “Thou shalt not lie” over and over until my friends returned from the playground. I should have learned something about oversharing, but I did not.  I do feel sorry for that teacher though. If you can’t see the humor in a child’s perception of a nude beach, you have no capacity for joy and I pity you. Also, I’m never going to be forced into lying about lying again.

In the eighth grade my Bible teacher told us technology works better if you allow it to honor the sabbath. He was a lovely man with a large square head and an impressive comb over. He truly cared about us and was paid almost nothing to teach us. I adored him and believed everything he said. Granted, when I was an eighth grader technology was my brothers Casio keyboard, our Atari game system, and my Texas Instruments calculator.  I did my damndest to make sure I didn’t use them on Sundays, and tried to get my dad to find a church we could walk to so the car could have a break. My dad said it was hogwash, and our poor car was never allowed to honor the sabbath. As a result of my Bible lesson, I’m still very good about turning off lights and the computer when they are not in use. I may not give them an actual sabbath, but I do give them breaks that might add up to a day off. Admittedly, my phone and car never get a day off, but lets face it phones are decidedly pagan, they wouldn’t honor the sabbath anyway. A friend of mine thinks that this crazy notion has probably decreased my carbon footprint. Full disclosure, I need all the help I can get. I can’t recycle for shit. I try. I really do, but my husband and son are constantly taking things I put in the recycle back out and saying “you can’t recycle that”. They do the same thing with what I put in the trash asking “why didn’t you recycle that?”. To which I remind them that I was raised by republicans and went to Christian school, who the in hell was going to teach me to properly recycle?

My husband is forever amused and delighted by lack of knowledge on earth sciences, and how I was raised to regard Charles Darwin the same way I regard Hitler and Stalin. When I’m feeling particularly frustrated and competitive with Garry because I’m constantly coming up short, I’ve actually considered challenging him to a sword drill. For those of you who don’t know what a sword drill is allow me to disappoint you. The sword drill I speak of has nothing to do with an actual sword. No my friends, the sword is the bible itself (Ephesians 6:17). A sword drill involved all of us pupils standing at attention beside our desks “swords” in hand. Our teacher would yell out a bible reference “Psalms 118:5-11” and whoever found it and started reading it first was the winner. I bet you wish you had this life skill. I challenge any of you to a sword drill anytime anywhere. I don’t even need a bible with tabs indicating the chapter. I’m that good. I’m kidding, I’m not that good. I completely lacked any motivation to win. When you’re dyslexic and winning means you get read aloud from the King James Bible, you are more than happy to lose.

Easily the most fantastical things I learned in Christian school regarded sex and dealing with the opposite gender. As a child I was taught that Jesus loves me this I know, for the bible tells me so. Once I hit puberty there were a few caveats thrown in. Jesus still loved me, but my value was inescapably tied to what may or may not be happening between my legs. We were divided into male and female groups for sex education. I’m told the gym teacher, that had to teach the boys, couldn’t say the word “penis” without stuttering, he was so uncomfortable about the topic. Abstinence till marriage reigned supreme, although it was not very effective judging by our astronomical pregnancy rate. My English teacher told me “a lady should not wear black patent shoes because they are reflective and boys could see your underwear”. During my naughty school girl phase, in my twenties, you bet I rocked a pair of black patent heels. Wearing white cotton skirts made boys think of bed sheets. Modest is always hottest. The difference between a good Christian girl and toilet seat is a toilet seat warms up to you when you touch it.  I look back at much of my sex-ed with amused disdain. When I was in my twenties a male friend from church took me to lunch to tell me that I was a “stumbling block to Christian men” and needed to evaluate the way I dressed and acted. I complained to a non-christian friend about it, and he said “that is the rapiest thing I’ve ever heard”. It wasn’t until that moment that I really began to see how much the onus of “sexual sin” was placed on the girls. When a girl got pregnant she was expelled. The father of the child was benched for a handful of basketball games. We, the girls, MADE men lust and it was our fault when they faltered. Stumbling block, my ass… my saggy grandma ass.

My brother and I begged to go back to public school pretty much from the time we left it, and were finally allowed to finish there. I actually regret it though. I had been at the same school from third grade on. Well almost, I spent half of fourth grade and all of fifth grade at a different Christian school. Oh, and I was briefly expelled in eighth grade for telling the music teacher I was praying for him to get fired. So, I was home schooled spring semester. But aside from that, I had grown up with these people and done everything at that school. I regret that it’s not my Alma mater. I regret that I’m not alumni and invited to reunions. Although, I did learn many of the things my senior year at public school that had been missing at private school. AIDS was still terminal and spreading, and we practiced putting condoms on bananas in at least three classes. If you ever need to encase your fruit in a condom, I’m your girl. I don’t do pineapples though. The boy that was my egg-baby-daddy in my Sociology of the Family class taught me what a 69 was. Up until that point I had no idea it was more than a number. He started by having me look at the number, then progressed to a yin-yang which also didn’t help. Finally, he drew people. He was a very good artist, and I got the gist of it pretty quickly. My new public school friends loved the novelty of having a completely naive play thing. They were all very respectful and kind about it though. I didn’t drink at parties so I was a handy designated driver. I was also petrified of sex and pregnancy and pulled more than one drunk friend out of a frat guys clutches. I would later discover that I have no capacity to separate my body from my heart. You get my body, you get my heart. The fear of Christ’s rejection for not saving my “special gift” for my husband, probably saved me a few years needless heartache.

The best teacher I ever had was at Christian school. She taught literature, speech, and drama. She added layers and depth to the great books and encouraged my flair for drama and performance. She was sarcastic and wickedly smart. Her only agenda was to teach and inspire, and she did that beautifully. Mostly, I think she really liked all of us. Every year we took a Bible class and once a week we had chapel. I know my Bible. I don’t read it the way I did then. I have life experiences that have changed my perspective. I’ve rejected a great many of the philosophies and some of the theologies that I once accepted without question. But I know my Bible. I know when someone is using it out of context or has lost sight of the intended audience or historical setting in which it was written. Context is important. The Bible without context is dangerous. It’s a sword. My husband still marvels at some of my naive moments and ah-has in life, but I like to think it makes me endearing to him. I will always make fun of my Christian education, but I will also be grateful for it. I know my Bible, and I won’t easily be fooled (at least not in that front) and that is of great value.

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.

Grandma Butt

We’ve recently had our house remodeled and one of the greatest things about it is our new six panel doors. When we got rid of our crappy-almost-cardboard 1979 doors I also got rid of my cheap Target door mirror. I have replaced it with a big glorious metal framed full length wall mirror that hangs on the other side of the room between our two bedroom windows. It is a huge mirror and has access to a lot of natural light. All good things right? Wrong. It shows all the details, and trust me when I tell you the devil lives in my details. Hunny, I’ve got some details.

This all went down last fall before I started CrossFit or was even considering starting CrossFit. There I was looking at my bare ass in said mirror while my husband lay on our bed staring at the iPad. That’s when I noticed that sometime (hopefully in the recent past) I had developed a nasty case of grandma butt.

***Apparently not everyone knows what grandma butt is just like not everyone knows what a car poo is, and I find that baffling. So let me break it down for you. A car poo is a black chunk of ice and snow that falls off the bottom of your car. They are everywhere this time of year. You have them in the garage and on your driveway and they are all over the roads. They are also totally unrelated to this blog post, but I’m always shocked by how many people don’t know what a car poo is, so consider it a blog post freebee. You’re welcome.

Grandma butt is, as the name implies, a sad fact of the aging body. As you age you lose collagen (God, I miss you collagen), fat and muscle mass. All of these lost ingredients can lead to grandma butt, which is the loose skin one develops at the bottom of their butt cheeks. It kind of hangs there like a turkey wattle. Don’t get excited gentlemen, grandpa butt is alive and well, and just as prevalent as grandma butt. You boys are not immune.

I don’t know if every woman is as eager to point out their flaws to their significant other as I am, but it’s one of my favorite pastimes.

“Babe, I have grandma butt!”

Not looking up from the iPad, “what’s grandma butt”.

I explained it, and he responded, “Babe, you’ve had that for years.”

Inside I gasped in horror that I’d had a turkey wattle for an ass “for years” and not known it. I was also kind of mad because he knew it and didn’t tell me. My friend Libby’s dad is a marriage counselor and he claims that people only get married because they can’t see their own butts. I like this theory, because it means Garry only had one job. ONE JOB, and he failed. So, my grandma butt is now officially his fault and not mine. On the other hand Garry’s completely indifferent reaction reminded me how men really aren’t the least bit particular, and we think they are much bigger critics than they are. In the fifteen years that Garry and I have been together I have been all sorts of shapes and sizes. Although there were times I was pretty sure only one of us should do it with the lights on, he has never complained. Lets face it, dudes like flesh. He likes me jiggly and juicy and he has no complaints about my grandma butt. He’s just pretty happy when he’s getting attention and I’m showing flesh, even if that flesh resembles a turkey wattle.

If you have never been to a Crossfit gym you should Google or Bing CrossFit athletes, and you will see the most perfect derrieres on God’s great earth. After eight years of Garry begging me to join CrossFit and workout with him, it was becoming a viable option. Behind the scenes in this whole scenario we are planning some big celebrations. First there is Garry’s miraculous response to the last three years of cancer treatment, and I’m finishing my Masters of Jurisprudence in Healthcare Compliance Law this May. This summer we will do our usual week long raft trip, but we are also going to Costa Rica, and I have been buying bikinis like crazy. One in particular is a little problematic. For one thing it is not age appropriate for a 45 year old, but whatever, I’m leaving the country and mommy’s still got it. I’m wearing it. It’s super cheeky. It’s basically a thong with little mud flaps to cover my butt cheeks. A slight breeze and that baby is a thong. I kind of want to rock it, though. Which means I have work to do, unless I can figure out a way to get my crossfit coaches butt on my body.

Garry is, as always, my greatest supporter and fan when he knows I want something. He sees me lifting my butt into place in front of the mirror and will smile and say encouragingly “it’s looking good, Babe. It’s getting better”. Although I’m pretty sure all men are willing to lie to us about how we look out of a survival instinct, I think the turkey wattle is shrinking and being replaced by actual beefy muscle. I’m never going to have the butt I had in my twenties…. But I can have a pretty good butt for a middle age woman who pees her pants when she jumps rope, and I’m totally cool with that. Plus my husband thinks I’m hot.

Lookout Costa Rica, my grandma butt in a pseudo-thong is coming your way.  Sorry. Not Sorry.

You can’t get your old life back, but you can build a new one.

WARNING: I swear a little/a lot, and make references to Marvel Comics characters. If you are sensitive to language or not very nerdy you may be offended or confused.

Thirty-six months ago my husband told me “I have a swollen lymph node but I’m not sick and it doesn’t hurt”. My first thought was “he’s wrong, and I can make it hurt”. He pointed out a walnut sized lymph node in his left groin. I knew it was walnut sized before I touched it, because I could see it bulging under the skin. I poked it hard and asked if it hurt. He shook his head “no”. I knew he had cancer.

A year prior to that Garry had developed a knee to groin blood clot in his left thigh. He had no risk factors for a DVT (deep vein thrombosis) so much so that I decided it was an impossibility and stupidly said so as the ultrasound tech rushed out of the room to notify the radiologist of his giant DVT. We spent the better part of the next year trying to figure out how a non-smoking, active, thin, 39 year old male who was obviously not taking birth control pills could develop a DVT. The only reasonable assumption could be that he had a genetic clotting disorder. We knew cancer can cause hypercoagulation. My dad had multiple clots in his lungs during his battle with Melanoma just a few years prior. Garry even asked “could I have cancer?”. The answer was always a “no” without hesitation.

Garry always said he’d stop rafting commercially when he was 40 years old. He developed the DVT the spring before he turned 40, and because he would have to be on blood thinners decided it wasn’t worth it to raft that summer, but he’s never forgotten his stolen final summer on the river. A year latter he was gearing up to take that summer back. He decided he would go off his coumadin and try to thin his blood with fish oil and aspirin. He would raft. I agreed with the stipulation that he would consult a hematologist before he put his plan into play. He already had the appointment with hematology/oncology when the lymph node made its presence known. I told him to show her the lump.

After that first visit it was decided that we would wait a month and see if it changed. It didn’t, and a biopsy was scheduled. Garry had a pre-op appointment with the surgeon the following Wednesday. I did not plan to go with him and had meetings and a training that afternoon. Garry is the oldest of five boys and his love language is largely based on teasing. If Garry fucks with you, it means he loves you. He loves me a lot. He started texting me that the surgeon thought they lymph node was superficial enough that he could remove it at the pre-op appointment in his treatment room. I was certain this was bull shit and pretty much told him so. What I didn’t know is he barely had a signal and his texts were going out but he was not receiving mine. I continued working because I figured I was being had, but still worried he might actually be getting cut open at the same time. I finally told my boss who said “go to him!”. I told her I thought he was messing with me, and she said, “what if he’s not”. Irritated I finally got a hold of him as I pulled into the parking lot. He was already done and out and walked up to my car. I rolled down my window and said “you pulled me out of a meeting, did you really have surgery?”

“Yes” he replied.

“I don’t believe you. Prove it”

“You want me to drop trou in the parking lot”

“Yes!” I said emphatically.

*****Nurses are great empathetic caregivers until we’re not. I have friends who didn’t believe their kids had broken bones and made them suffer for days before going to the ER. I knew I had appendicitis, but was so worried I’d be the girl in the ER with gas that I suffered all night until the pain localized to my left lower quadrant. Admittedly we are not always to best caregivers even to ourselves. This was not my best moment.*****

Garry dropped his pants in the parking lot and sure enough there was a nice surgical dressing on his left groin complete with shadow drainage of blood through the gauze. “You married an asshole” I told him and he agreed.

    I didn’t think we’d hear back from pathology for a week. I fully expected a cancer diagnosis, but had convinced myself Garry had a nice treatable follicular lymphoma. At work we were going live with a new electronic medical record (EMR) and me and our IT person were running point on the project including moving all current patients from the legacy system into the new one. The first week in a new EMR is always a nightmare. It was the Friday after Garry’s biopsy and our go live was Monday. When Garry called me that Friday, I was in my office just off our education room. My boss and three or four other coworkers were in the education room working on transferring patients into the new system. What happened after that is foggy and incredibly clear. Time stopped and sped up all at once. I’ll do my best with the recollection, but I make no guarantees that any of it is 100% accurate.

    Garry never called me during work. I figured maybe it was about the biopsy, but remained unworried, because I felt prepared for manageable bad news. I shut my office door and answered the call.

    “The doctor called. Are you sitting down.” I could hear the stress in his voice and started rehearsing my comforting speech in my head.

    “I’m sitting.”

    “I have melanoma. It’s melanoma. They want me to come in at 3pm.”

I heard someone wail the word “nooooooo!” and maybe a scream. I remember thinking “who is doing that? That is not helpful”, but also realizing it was me. This defied reason. This was outside any concept I had of the existence of a loving God. God was drunk. He was drunk and had forgotten that my dad died of melanoma less than five years prior. The world shattered. My world shattered. I remember sending an angry prayer to the heavens, “sober up and fix this!”.

    “Where are you?” I asked.

    “At work. They just called.”

    “What are you doing until 3?”

    “I don’t know. I don’t know what to do.”

    “I’m going home. I’ll meet you there.”

I clearly remember packing up my things and walking out of my office. They had heard the screaming and knew things were terribly wrong. Cathy, my boss, stood up. I told them I was leaving and Garry had melanoma. I remember Cathy’s hug. It was a mothers hug. She took my face in her hands and said, “You will be off next week. Let us know when you are ready to come back. We will be fine”. I remember thinking that was crazy. I’d be back on Monday. Cathy was right though. There is no working the week after a diagnosis like that.

I think I called a couple friends on my way home. April and Meghan. I don’t know if I actually spoke with them or just cried into their voice mails. I don’t remember how we spent those hours waiting to see the oncologist. I think we talked about how and when to tell our six year old son, and Garry’s mother.

It’s hard to explain what those first hours and days were like. Agony. It was agony. On diagnosis we knew it was metastatic melanoma, and that is bad. Eventually we learned it was mucosal, and had started in Garry’s gut. This was on some level a relief to me, because if I had missed something on his skin…. I’m a nurse. My dad died of this. If I had missed something. I couldn’t live with that. But on the other hand mucosal melanoma is much more aggressive than its cutaneous cousin, and much less responsive to treatment. If cutaneous melanoma is Ronan the Accuser than mucosal melanoma is Thanos.

The week was spent finding out how bad is bad. There were blood draws and scans and waiting. There was very little sleep and lots of nightmares. There was too much Googling. Ultimately Garry had no metastasis beyond the localized lymph nodes, and that was good. It meant he had somewhere between a 20-30% chance of being alive in 36 months. He would look at me and say “I just want to be his dad”. When given all the choices we decided to pursue clinical trials. We would roll the dice and hope for better odds in the experimental world than in the known world.

So far the gamble has paid off. At Garry’s last scan I asked what were the chances that he would have no more measurable cancer on his next scan. The answer was “It’s likely”. Coincidentally his next scan will be on the anniversary of his diagnosis. Fuck you, Thanos. I spent the rest of the day walking on air. It was a medical miracle. It was not possible when my dad was sick. This was amazing. But then while I was making dinner the rage hit, the gratitude melted, and I was pissed. “Are you fucking serious?” I thought. “Is this it? I want the last three years back! This shit changed me. I’m not remotely the same. He’s not the same. Our son is not the same. This is bull shit. We need payment for the last three years! It took our time and our money and who we were. I want it back. I want it all back!”.

It’s so very human to critique a blessing. To find the flaw in the diamond. Our oncologist can’t give us our life back. It’s not what she does, but she gave us time to build a new one. Maybe a better one, but that is up to us. There is no living like cancer never happened. Cancer casts a really long shadow, but great things happen in shadowy places. Life adapts, we evolve, we thrive, or we don’t. I think it is the creatures who spend their lives looking for a way to return to the place that is no more, who can’t survive. The poor souls stuck in the “I want it back” that fade away. I’m angry. He’s angry. We get to be angry, but we don’t get to be stuck. We have a life to build, and we have the infinity stones. Fuck you, Thanos.

Not Smelling Like R Kelly’s Sheets and Other Lofty Goals

If you were hoping to read an impassioned speech on the evils of sexual harassment and assault, I’m sorry. This blog post isn’t about that. This blog post is about piss, my piss. If you don’t understand the reference you clearly haven’t acquainted yourself with the lyrical genius of Macklemore, specifically his song Thrift Shop. Go do that now, and then come back. This blog ain’t going nowhere.

I came home crying from CrossFit this morning. Tears were the second form of secretions I lost control of today. The first was piss. This is not new for me at least not since I had my son.

We have a trampoline park in town and I have never joined my child for the bouncy enjoyment. When he was really little and I explained that bouncing makes me pee he earnestly assured me they have a bathroom and I’d be fine. Oh, you sweet tiny man with a long urethra that you can angle up to defy gravity…. My urethra is about an inch and a half, and it points straight to the center of the earth, the very source of earth’s gravity. Additionally, I pushed a giant noggin through its next door neighbor about nine years ago. I don’t want to brag but I can push a baby out like a rock star. That baby popped out in three pushes. I hemorrhages my eyes I pushed so hard. I looked like I’d been strangled, and I’m convinced I eternally rearranged my innards.

Approximately, one in three women between 35 to 55 years have some stress incontinence. Over age 55 the percent only increases. Stress incontinence is considered leaking or dripping urine when sneezing, laughing, jumping, lifting, etc. For me it’s only a problem when I jump. Jumping rope is my kryptonite nemesis. The evil male trolls that invented CrossFit are in love with jumping rope. Yeah F—- those dudes.

I’m going to go ahead and declare that jumping rope is an ageist-sexist exercise. If one in three men pissed themselves during a particular exercise no one would do that exercise. Think about it. NO ONE WOULD DO THAT EXERCISE. Once again F—- those dudes.

So there I was at 7am with yoga pants clearly soaked at least halfway to my knees. I don’t do double unders either. I do singles, and I can barely do those because I’m so distracted by my ever increasing drip rate. At some point it ceases to be an effective workout. It’s mostly an exercise in humiliation and misery and has become my official deal breaker with CrossFit. F—- those dudes. All the dudes. If you have a penis, I resent you.

When I started CrossFit I had three goals;

  1. Build muscle mass.
  2. Build bone density.
  3. Look good enough to do it with the lights on.

I have a new goal.

     4. Don’t smell like R Kelly’s sheets.

Jumping rope predisposes me to fail at goal #4.

By the time I arrived home I had regressed to a three year olds level of irrational stubborn frustration. I found my husband in the shower and proceeded to berate the evil bearer of a penis on my mornings trauma and how I’m NOT GOING BACK THERE IF THEY EXPECT ME TO JUMP ROPE. Then I left to take my own shower and wash my piss off like the sexy classy woman I am.

My husband and I have traditionally had some intense conversations while one of us is showering. Some of them result in life changing behaviors or decisions. When we were newlyweds I was the clinical director of a facility and worked ALL the time. I was supposed to have a Saturday off with him, but someone called in sick and I couldn’t get it covered. So there I was crying the shower because I had to go cover another shift. He popped his head in and looked at me sympathetically. With the best of intentions he said “Awe Babe, even your boobs look sad”. I quit that job within the month. I’m willing to work hard and go the extra mile, but not if it gives me sad boobs.

Within five minutes of my melt down during his shower, he was sticking his head in my shower and doing his absolute best to comfort me while holding back laughter.

“They have a surgery” he offered.

“I’m not going under general anesthesia so I can jump rope! I fail to see the benefit over the risk!” Of all the first world problems…..

He tried several other solutions all of which I dismissed, because I was still an angry three year old, and angry three year olds are not solution oriented. Plus it’s not like I haven’t tried exercises or over the counter interventions. To be honest some of those things have made it worse. However, I have not tried physical therapy which probably makes the most clinical sense, and I have friends that swear by it. Garry brought physical therapy up as well, but I was still playing by preschool rules and stubbornly told him it wasn’t going to happen.

Throughout the day I have received multiple text on how sexy and beautiful I am (in spite of my incontinence and personality issues). As a result I have forgiven him for his impeccable bladder control and I am feeling less frosty to his earlier suggestions.

In defense of CrossFit, no one MAKES you do anything. In fact it’s been my experience that they work very hard to ensure you push yourself but in no way compromise your health and safety. I’m fully aware that all I have to do is ask a coach to give me an alternative to jumping rope, but in the moment, rage born from humiliation is more fun than reason or problem solving.

If the last three years have taught me anything it’s that somethings aren’t worth it. Nobody is or ever will pay me to jump rope. It’s completely replaceable in my life. I have no fitness goals that require me to jump rope. In fact, as of today I have a no piss policy and jumping rope is the prime violator, so it can piss off. That said, I’m going to try the physical therapy because there is nothing wrong with a healthier pelvis, and if I can jump on a trampoline with my kid or even someday do a double under it might be nice. In the last few years I’ve also learned that there’s nothing wrong with prevention and taking control of what you can, or at least giving it your best shot. In the meantime that cute pink jump rope I bought can F— it!

Wouldn’t it be great if it did?

Lucy Kalanithi is a physician and a widow. Her husband, Paul, died of lung cancer. He was diagnosed as he was completing his neurosurgery residency. They had a plan before cancer. She was already working as an internist and when Paul would finish his residency they would have the time and finances to start their family. If you’ve heard Lucy speak you’ve heard this story. They knew he was terminal and discussed the possibilities of going ahead and having a family. Lucy asked Paul “Don’t you think saying goodbye to your child will make your death more painful?” and Paul replied, “Wouldn’t it be great if it did?”.

Nothing has ever made more sense to me. Nothing. I can’t explain why. There is knowledge and there is knowing. Knowledge is explainable it lends itself to language and description. Knowing has no language, because the soul is without speech. “Wouldn’t it be great if it did?” is something I am deeply knowing.

Early in his diagnosis my husband said “This would be so much easier if I didn’t have you and our son”. I was not offended. Easier rarely means better. Having us to worry about, to care for, to fear leaving was not easy, but it was better. It was so much better, and infinitely more difficult.

My dad died of melanoma in 2011. He was diagnosed nine years prior. It was discovered in a small black spot behind his right ear. Our family physician removed the spot and sent it for biopsy. Skin cancer was not new to my family lineage, but melanoma was. We were of Scandinavian descent and prone to highly treatable skin cancers. Both of my paternal grandparents had had multiple excisions on their faces and ears, with no additional treatments needed. The cancers were cut out and by nature of their removal cured. Melanoma is a different beast entirely.

Cancer in its simplest form is unmitigated growth. Cancer is not simple, but that is my simplest explanation. There are countless variations and complexities that exist under the formidable umbrella of cancer. Melanoma is one of the uglier ones. Melanoma cells grow quickly and worse still spread to other parts of the body. We call the spread metastasis. When my dad was diagnosed from an initial small biopsy of his skin. We went to Uchealth Anschutz Pavilion to see Dr Renee Gonzales. He was the regional melanoma expert at the regional teaching and research hospital. We were lucky to be living within 70 miles of his expertise. They removed a larger section of skin and a local lymph node. The pathology report came back clean. They had removed all the cancer. The treatment plan was to have annual checks for the next five years to make sure it didn’t come back. We left rejoicing in our good fortune. But secretly I heard the echoes of a nursing professor whispering in the back of my mind, “I hate melanoma. It’s like breast cancer. You think it’s gone but then five years later it shows up in their liver, lungs or brain.”   

I interviewed for my first hospice job on April 20, 1999 in Denver, Colorado. I sat in reception waiting for my interview. The receptionist was busy on the phone because nurses in Littleton were finding it hard to get to their patients as there was a large police presence and road closures around the high school. As I interviewed for the job that would become my passion, children and a teacher were being massacred at their high school a few miles away and because of that I have never forgotten the date. They hired me, and those initial patients of mine have not been forgotten any more than I can forget the events of the day.

One of my first hospice patients was a consummate lady and a consummate Texan. She sat comfortably in the sunny living room of her daughters house. Her family had moved her from Texas to Colorado, as she was widowed and her cancer had advanced. She was dying and needed to be with family for care and comfort. She was impeccably dressed and very at ease. In her slow soft drawl she explained what was already clear in her demeanor, she was not afraid to die but did wish to be more comfortable. Transversely her daughter stood the whole time, ringing her hands and anxiously awaiting an opportunity to get something or do something that might ease her mother. We signed paperwork. I ordered medication and medical equipment. I instructed them on how to give the medications and why. I suggested dietary changes and positioning that might aid swallowing. Finally, I asked if they needed anything else or had any other questions. Her daughter with face tight and desperate eyes asked “have you ever known anyone with cancer before. I mean, not a patient. Have you ever loved anyone with cancer before?”. My answer was “no”. I was twenty five years old and looked eighteen. I understood why she was asking. I knew my answer was disappointing. I didn’t know what she was going through. I didn’t. How could I?

Five years after Columbine and two months before my wedding day my dad developed a weird cough and upper respiratory discomfort. I talked him into getting a chest xray to humor me. They found a spot. It was completely unrelated to the cough, but I had a gut feeling…. They removed the tumor in his lung, but two days before my wedding they found a spot in the liver. They gave my dad three months to live. My mom picked up her phone to call me, and my dad took it away. He forbid anyone telling me until I returned from my honeymoon. It was a huge sacrifice on his part and the best wedding present we would receive. My aunts all cried during the father daughter dance. I found it extremely uncharacteristic. My dad, who never sang, tried to sing the song to me. It was Butterfly Kisses, and his voice kept breaking. I should have known, but I didn’t. I was in love, and in my mind all was well with the world.

He didn’t die in three months. He lived until the day after our fourth anniversary, and passed away peacefully in my parents home. In those last months we spoke about dying. I remember asking “what is the hardest part? Are you afraid of dying?”. He said, “No, I’m not afraid of dying. I’m afraid of the goodbyes”.

My husband would develop melanoma within five years time. Only his diagnosis of mucosal melanoma was much worse than my dads cutaneous melanoma. It’s incredibly rare, highly aggressive and has a poorer prognosis. My husband, like my father choose clinical trials over the normal standard of care, and has been incredibly, miraculously successful. Although he carries a sort of survivors guilt that he is living and thriving when my dad died. He feels guilty that I am living through this disease again, and although its brutal and cruel and I often think God must be drunk. Isn’t it great that it hurts? Because it can only hurt when you have loved deeply and are loved deeply. I wouldn’t have it any other way. Isn’t it great that it does?