Space Aliens and Your Pelvic Floor

This is a follow up to Not Smelling Like R. Kelly’s Sheets. So if you haven’t read it, go back into my archives and enjoy, or be horrified. The choice is yours. 

In April I started physical therapy for my pelvic floor. I made my appointment. The receptionist asked for my email to send me a “packet” that I would need to read and complete before I arrived. It was 16 pages. It included a detailed bladder function diary, and details about what to expect. There were multiple references to vaginal and/or rectal sensors (AKA alien rectal probes) for biofeedback and electrical stimulation. I decided I should stop reading or I’d cancel the appointment. I figured this would be invasive, but had not considered the potential for probes of any kind.

I tried to keep an open mind. I’ve had a baby and all sorts of modesty and respectability go out the window in that experience. I’m not particularly shy anyway. It would be fine. Clinical and fine. My physical therapist was bubbly and chatty and very passionate about the pelvic floor. She had just returned from a conference on the subject and loved to educate her clients. She also informed me she tried not to use probes (not an alien in disguise). Thank the sweet baby Jesus.

She took a brief history of my life and lifestyle. Focusing on the late in life baby, 18 months of breastfeeding, my activity level, and being a homecare nurse for most of my career. Then she looked at me sternly and said, “You have to stop power peeing”. I’d never heard the term, but I knew exactly what it meant and I had no idea how to stop. It’s the way I pee. Is there another way to pee? Apparently there is. You’re not supposed to use your muscles to shove the urine out of your body as fast as possible. You’re actually supposed to sit there, relax and let gravity do its trick. Who knew?

In a nutshell, I have a chronically overworked pelvic floor. She likened it to lifting a fork to my mouth with the same effort I’d use to curl a 25 lbs weight. Tension to task. It makes sense. My pelvic floor is locked up. I need to relax my vagina.

She would apply tension to my pelvic floor muscles (use your imagination) and I was supposed to relax them and then tense them for five seconds. I couldn’t do either without a lot of focus and coaching. When I tried to contract the muscle I could only hold it for 2-3 seconds. It’s like I have a level of constant tension that makes me already fatigued and unable to increase that tension. My pelvic floor is a hot mess. 

This woman was the most enthusiastic vagina expert I’d ever met. She gave me article after article and recommendation after recommendation for my tissue health and hormone balance. I actually bought a product she recommended called V-magic, and all of the affected parties in my house found it pleasant. She was a wealth of information and seemed to delight in the many ways I was a textbook case of jacked up pelvic muscles. 

  1.  I started ballet when I was three and have been in some type of athletic activity most of my life. She would laugh and say “this is why I like to stay fluffy” and pat her voluminous lower abdomen. “All that muscle tension is bad for you”.
  2. I’m a woman. We are perpetually sucking in our stomachs to impress stupid boys, who quite frankly are plenty excited by an ounce of flesh. I don’t know why we try so hard.
  3. I had a baby and breastfed for 18 months. The hormone swings of pregnancy followed by breast feeding relax some important muscles, and it makes you feel like all your organs are going to fall out through your pelvis. Naturally you lock up a little to decrease that horrible sensation. Apparently I never stopped. 
  4. I had a second pregnancy and had to end it because the baby implanted in my Fallopian tube and not my uterus. This is a sudden death scenario for all parties, unless it’s discovered in time. Our baby didn’t stand a chance, but I would survive if we ended the pregnancy. It was either that or bleed to death, so the choice was pretty obvious. However,  the hormone swings of being pregnant to suddenly not being pregnant did a number on my tendons and ligaments. They loosened for pregnancy and then had to tighten right back up. All of this action threw off my pelvic floor, once again. 
  5. I’m a nurse. To be clear, I’m a homecare nurse. Ask any nurse or teacher and they will tell you they don’t pee. So not only am I in a profession dedicated to bladder retention, I upped my game by working out of my car. I don’t like to pee in patients homes, so I look for gas stations, churches, relatives homes on my route and so on. If I had a patient in Redfeather or by the Wyoming border, forget about it. I can hold my bladder like Hercules and I release it the same way. I’m a power pee-er. All very bad things. 

It’s pretty deflating to find out that you don’t pee right. It makes you wonder what else you think you’ve had figured out since toddlerhood and are completely jacking up. I probably don’t walk right either and am systematically disintegrating my joints every step I take. Evolution at its finest. #weaklink

I think I saw her weekly for 6 weeks. She gave me homework and asked if my husband would be willing to help. I laughed and said he’d be delighted. She said you’d be surprised how many men are uncomfortable helping their wives do these exercises. That baffled me. Who are these men??? My husband is not big on PDA. If you see us in public you’ll think he finds me completely unattractive. Don’t let him fool you, when we are alone he expects to be treated like my personal stripper pole. 

I was doing pretty well for a while, but then summer came and vacations and other distractions. I kind of ignored all I’d learned and drifted back to my locked up pelvic ways. Muscle memory is a bitch. It hit home a few weeks ago at CrossFit when we did something in the warm up and I felt the drip I hadn’t felt in months. “Damn it, I deserve that” was all I could think. I told Garry I needed to get back to my exercises. He was elated. 

Sadly, it was probably a bit too little too late, because within a week I had horrible hamstring and calf pain. This pain eventually worsened from soreness to nerve pain, numbness and tingling from hip to foot. I also developed a limp and felt as if my muscles weren’t firing right.  This is when it sucks to be a nurse. We get the slightest odd sensation, and we will find a terminal illness to go with it. We are amazing players in this mind game of terror. I was pretty sure it was sciatica, but I was also considering a deep vein thrombosis, multiple sclerosis, Lou Gehrig’s disease, and a brain tumor.

Life has taught me that early intervention is key. I went from mild to aggressive treatment in a matter of days. Acupuncture didn’t fix it on Monday. Urgent care’s muscle relaxers and anti-inflammatories didn’t fix it on Tuesday. By Thursday it was clear I was getting worse and not better. So I limped my poor broken ass to the emergency department. The PA who saw me was clear I wasn’t dying. I did have a bulging or slipped disk and needed a higher dose of steroids followed by physical therapy. He said I could swim, but no bending, twisting or lifting more than 30lbs for two months. I took that to mean no CrossFit. 

At this point we were two weeks into the CrossFit open, and surprisingly I was bummed I wouldn’t finish. It’s surprising because I didn’t ever want to be in the damn open. I didn’t sign up for it. So, it was a mystery when I received an email welcoming me into the CrossFit open. The open is the annual ritual of separating the men from the boys, so to speak. It’s composed of a series of 5 particularly grueling workouts over a five week period. You get to log these workouts for the world. They have the prescribed workout and a scaled workout option.  I don’t need the open to show me or the world how I rate, but other athletes think it’s fun, my husband is one of them. He thought it would be even more fun to do it together. He’s romantic like that. I did a great deal of bitching, and even cried while making dinner one night. “You don’t know how much I scale things already! I can’t do the open scaled workouts, I know I can’t.” I knew I’d suck at the open. Sciatica should have been a welcome reprieve, but I really hate not finishing something I started even if I’d make a lousy showing. 

At my first PT appointment the therapist started right in on how strengthening my pelvic floor will be my ticket to recovery and maintaining good spine health. Damn it! The pelvic floor again! She didn’t make any mention of probes, but did give me some hints and exercises to relax and strengthen the muscles (no probes needed). 

Currently, I’m on day four of my steroid burst and I’m feeling a little violent. One more day and I’m off them. I’m trying to mitigate becoming a danger to self and others for the next 48 hours. I’m planning on swimming tomorrow and I’ll bring up the stationary bike next time I see the physical therapist. My limp is lessened, although still present. 

When push comes to shove, I’m shallow-vain-girl. It’s important to me that I age well. I know CrossFit is great for my muscle mass and bone density. It promotes mobility and balance and all the other wonderful things. More importantly, I love the way I look. All the things that weren’t so high and tight are getting higher and tighter. In the next two months I’m terrified my boobs will sag. I was going to put my membership on hold, but in discussions with the manager we agreed to let it ride. I used to work with her at a rehab hospital and I trust her with my spine (and boobs). They have worked with injuries more significant than mine. It is surprisingly possible to scale a workout more than I already do. My one claim to fame might be that I can scale the shit out of any workout. Like.no.other. 

I’m going to get past the acute part of this injury and live a life dedicated to my pelvic floor health. My grandmother lived to age 105, so I really do need to be kinder to my body parts. If you have my genetics and are looking down the barrel of a long life. You should probably do all you can to ensure prolonged quality of life or that long life is going to suck ass. Unless you are one of the fortunate individuals to experience alien abduction complete with rectal probing. I am now convinced that these benevolent space creatures are deeply concerned for our pelvic health and maintenance. If I have learned anything this year its that a functional pelvic floor appears to be central to species survival, or at least mine.

Moving Day

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

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

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

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

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

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

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

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

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

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

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

Love Letter

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

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

My Love, 

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

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

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

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

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

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

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

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

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

Be Like Steve.

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

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

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

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

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

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

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

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

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

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

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

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.

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.