So That Sucked

Today I discovered that I am completely tapped out when it comes to unnecessary risks. Tapped out. A few months ago my husband signed our son up for a 1000 meter open water swim. It was ambitious and BD wanted to do it. Eventually, we realized it was probably more than a nine year old on his first open water should have to do, so we dropped him to the 250 meter. There were three open water training sessions prior to the actual event and BD was able to make it to one of them. The first one. The only one in a pool. We got him out in a lake once with a friend of ours who was great. It was eye opening and clear to me that dropping to the 250 was wise. Plus our schedule and the pace of our lives would make it impossible for him to adequately train for the 1000. 

Last night I decided to look at the weather for today and realized we’d be throwing our skinny-ass kid in a 70 degree lake, with 58 degree air temperature. This was the beginning of my shit spiral. I started texting my brother and sister in law who were both colegate swimmers and they agreed it was cold and they wouldn’t do it without a wetsuit. By 8:30pm I went on record with my husband that I was not a fan of going ahead with this stupid event. 

It’s important to remember that I’m an old hospice nurse and watching people die for 15 years kind of normalizes death. My mom was a pediatric audiologist who used to treat all children like they couldn’t hear. I, on the other hand, am constantly expecting people to drop dead. Being married to an oncology patient has not helped. My current job involves a lot of data and chart reviews on what can go wrong with kids and babies, so I also have that to fuel my paranoid little fire. 

I’m not in a good place right now for unnecessary risk, but I went to bed completely convinced they’d cancel this shenanigans and we’d have a lovely day without it. They didn’t. As soon as we were up my husband reminded me that BD’s mood tends to mirror mine and I better keep it together. I’m not good at containing how I feel, but I gave it my best shot. I tried to keep it light, but made sure he got the ‘listen to your body and do what is safe” lecture. I told him “if you feel like you can’t make it to the buoy and back don’t try to do it”.

Truth be told I’ve always been a cautious safety girl. Even before kids and cancer I’ve never understood our gladiator culture around extreme races. I was beyond baffled when extreme races came out with electric shock obstacles. There isn’t much that will make me give my husband a hard no, but there was no way in hell I was going to let him spend our hard earned money to overtax his cardiovascular system and simultaneously receive an electric shock. Seriously, what is wrong with us? Are we that bored, or broken, or both? In my mind this is the result of a bored culture of excess that needs to do unnecessary “extreme” things because we are dead inside. Fix your life people. 

So there we were at the reservoir and no one seemed bothered by the potential environmental impact on our skinny children. We are dicks, the whole lot of us. This youth event was happening. God save our souls. I was seething. I got to the point I didn’t want to talk to other parents, and I couldn’t look at my husband. He pushes BD in ways that I never will, and it’s usually so good for him. Additionally, there isn’t much BD wont do to make his dad happy or proud. But this felt like it crossed a line and was a breech of my son’s trust. I mean there is no way either of his parents would have willingly swam in those conditions. Honestly, I blamed myself. I’m the parent who’s judgement isn’t blinded by testosterone. Everytime I hear someone ask “but did you die?” I want to throat punch them. Really, is that the new standard? We are all going down in a blaze of bravado and machismo, and I’m over it. 

He had a great attitude. He was having fun with his friends, and from my vantage point happily got in the water. They all took off and he stayed with the herd until they rounded the buoy. He started to slip behind after that but had a friend close by. I watched him struggle and rest and make all the smart moves. He would call out to his friend and check on her. The safety boaters were keeping a close eye on them and I could hear them verbally check in with him. He was ok, but I was not. 

I could go on and on about how unnecessary this was. There are perfectly good heated pools he can swim in at anytime. This is hardly a necessary life skill. But more than anything I’ve spent three and a half years terrified my husband would die. It’s always with me. Always. Things are so good right now. He is literally without any measurable cancer which is nothing short of a miracle. Cancer is hard on a marriage, but our marriage feels like it’s in a really good place. I’m relieved and happy and trying to figure out how we do life in a cancer free world. But today, I lost my shit. It hit me like a hammer. I can’t be scared for my family. Especially when it’s not necessary. I can’t be scared. Don’t make me be scared anymore. I’m still scared for Garry. That will take a long time to go away, probably decades. I can’t be scared for my kid. 

I am not ok. I am altered. I imagine I will be finding out all the ways I’ve become jacked up in the weeks and months ahead. Good things can be taken away so fast, and I can’t unknow that. I don’t want to give morbidity or mortality an assist. That probably makes me a helicopter mom, but so be it. I’ve got one kid. He’s my best job. He’s my most important job. 

He is fine. He had fun and he wants to do it again. I do not believe that a good outcome means good decisions were made. I will have to weigh that in the future. I will probably have to decide if I do the hard no, or I don’t watch, or I do watch and take xanax. I have lots of options. I want my kid to live his life, but some things aren’t worth it. However, some risks are worth it. I know that, and I don’t want him living in a bubble. I just want to stop living on the knife’s edge of panic and I don’t know how to move forward. For now, I’m going to over react and throw impressive adult fits, and lose my shit, because honestly that’s more fun than being sad and scared. My husband will be so pleased. 

Love Letter

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

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

My Love, 

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

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

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

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

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

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

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

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

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

Be Like Steve.

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

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

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

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

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

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

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

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

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

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

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

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.

Rooms

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.