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. 

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.

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

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

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

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

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

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

“Yes” he replied.

“I don’t believe you. Prove it”

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

“Yes!” I said emphatically.

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

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

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

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

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

    “I’m sitting.”

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

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

    “Where are you?” I asked.

    “At work. They just called.”

    “What are you doing until 3?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When I started CrossFit I had three goals;

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

I have a new goal.

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

Jumping rope predisposes me to fail at goal #4.

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

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

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

“They have a surgery” he offered.

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

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

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

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

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

Wouldn’t it be great if it did?

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

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

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

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

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

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

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

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

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

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

Dear Grandma

Today I find myself paying the high price of mortal love. I should have written you long ago. I’m bad about writing. You wrote the sweetest letter to me when Garry got sick, in your shaky script. You were 102 years old and still handwriting letters to your granddaughter.

I’ve cancelled our flight, hotel and rental car that I had reserved for our annual visit on your birthday. You told me last year I wouldn’t be back because you weren’t having anymore birthdays, but you’ve said that before. However, I believed you and we all said goodbye. Then the months dragged on and you were still beating everyone at Uno and Bingo, and I booked a new trip. I figured we take you to Red Lobster. You’d jump out of the car and run in the building before anyone had a chance to help you walk, because you hated help. You’d get a margarita and my son would ask you questions about growing up in Chicago. Instead we will make other travel plans to say our forever goodbyes at your funeral. I will have a margarita.

When I was twenty-four you told me “in my time you would have officially been considered an old-maid” and you suggested that I marry the first boy who was nice to me. I followed your advice, but it took me six years to find a nice boy and another four to convince him to marry me.

You referred to yourself as dopey because school was hard and you never finished. School was hard for me too. I’m dyslexic and it’s genetic. Perhaps it’s one of the many things I shared with you. You were never dopey. You read more in a year than I will probably read in my lifetime. You raised three brilliant boys and you were so proud of their academic and professional accomplishments. I have lost track of the total of degrees between my father, uncles, cousins and brother and me. Not to mention published works. You loved books. You loved history and westerns. You loved big band music and you could dance. You love teddy bears.

My dad loved teddy bears and would buy them for me when he traveled, which was all the time. I love teddy bears and still have part of my childhood collection. My son is literally swimming in them. Garry has a strict “no more stuffies” rule that I make a practice of ignoring and getting the lecture when I get caught. Today after I received the call that you had died, I decided my broken hearted boy and I needed bears. I defiantly told Garry I was getting more bears, and his response was a simple “as you should”. It was extenuating circumstances after all. You always had bears on the door of your apartment, on your bed, and on the walker that you tried not to use. You began to give them to the other residence in your facility because they brought so much joy and comfort and you would say “everyone needs something to hug”.

I remember you told me that you grew a cup size with every pregnancy. You warned me that other women would tell me my boobs would shrink with pregnancy, but not to believe them. You were right. It’s a good thing I only had one baby. You had three and you had a rocking figure all 104 years and 50 weeks of your life. You were a babe, Grandma.

The single greatest thing about you was my dad. He attributed his phenomenal parenting skills to you. He read to us until we were late into our teen years, and his love of books was decidedly from you. When my Dad died the hardest part for me was calling you. I was a mom of a little boy and couldn’t fathom a call like that. It didn’t matter that you were 97 years old. You are not supposed to outlive your children. I’m so sorry that happened to you.

When I shut my eyes and think of you the image that stands out the most is one I saw countless times. It’s of my dad rubbing your soft wrinkled cheek with the back of his hand and saying “you are a very good mommy.” There is no greater legacy than that. I hope someday I have that in common with you. When my son is a grandfather if he still looks at me and thinks “you are a very good mommy” then I will have succeeded in the very best part of life.