Dialysis. As I discussed in the post JOURNEY: waste removal, January was an introduction to ENRD (End Stage Renal Disease) that landed my dad in the new world of kidney dialysis. I am a learner. I love to read about and study new things. If it has to do with medical anything, I am in. Combine that with the fact that this particular JOURNEY is happening to my Daddy and I have planted myself smack in the middle of all things dialysis.

Just a few of my new informational tidbits for like minded souls:

From the United States Renal Data System’s 2017 report:

• In 1972, Medicare eligibility was extended both to disabled persons aged 18 to 64 and to persons with irreversible kidney failure who required dialysis or transplantation.
• ESRD requiring dialysis is one of only 2 medical conditions that give you access to the Medicare program between the ages of 18 and 64.
• Even though the ESRD population remains at less than 1% of the total Medicare population, it has accounted for about 7% of Medicare fee-for-service spending in recent years. That equates to 33.9 billion in 2015.

I am a novice in my dialysis knowledge. I am learning more each day. But with the resources of my dad’s care team, I have learned so much in the past 6 weeks about a disease that was foreign to me just months ago. The most fascinating (and honestly, depressing) part has been the actual process of dialysis. This offering is my way of processing. Writing is my therapy. My blog is my way of interacting and communicating and placing letters into words and words into sentences and sentences into thoughts. Some of this is raw. That’s how my brain and heart feel after the last 6 weeks. Tired, vulnerable, exposed, longing for clarity, holding on to promises. Loved.

When your kidneys fail, you need the help of dialysis to filter the waste. To make that happen, there are two types of dialysis. The most commonly identified is hemodialysis. “Hemo” is when a semi permanent IV line, or a more permanent graft or fistula, is placed that gives immediate access to begin blood filtration. This is how my dad started dialysis. Because it was emergent in nature, he had a port placed and began hemo that same day. For the next three weeks, he had hemo treatments in the hospital and at an outpatient dialysis center. 12 hours a week, 3 days, should be doable, right? While it is certainly life sustaining, for many patients including my dad,  hemo is also wickedly hard. The side effects include low blood pressure, extreme fatigue, cramps, nausea and headaches. These symptoms can occur during the treatment and can persist post treatment. During those three weeks, my dad was exhausted all of the time and had to be medicated for side effects. And then there are the emotional tolls.

Traditionally, hemo is performed in dialysis units. For many patients, this is a way of life. While waiting for transplants or dealing with acute renal failure, this is their saving ground. For others, years and decades have been spent on machines treating ESRD. After sitting at dialysis with dad in center, I am appalled at the number of elderly patients that are transported from long term care facilities (by medical transport companies) to privately owned dialysis clinics. If you can’t see where I am headed with this conversation, just google “medicare dialysis fraud”. The mental and emotional toll of this environment is exhausting. It is depressing. And the worst part is that it really doesn’t even make you feel any better. I say all of this with the full knowledge that my dad is almost 75 and his other conditions complicate the situation, but with all I know, hemo is HARD. In addition to in center hemo, some patients perform at home hemo. While you don’t have to be a nurse or have a medical background,  home hemo involves vein access and big needles and blood and most importantly, a trained caregiver. You cannot do home hemo by yourself because of the blood pressure issues and other side effects. This is not an option in many situations, including ours.

The other dialysis option is Peritoneal Dialysis. PD is a type of dialysis that uses the peritoneum (the lining of the abdominal cavity) as the membrane through which fluid and dissolved substances are exchanged with the blood. That is the option that we have chosen for my dad. On January 16th he had a catheter placed in his abdomen for PD. He continued to take hemo treatments while the port healed. After two weeks of healing, we (this is a team effort!) began training to perform his dialysis at home. After a week of daily training treatments at his home dialysis clinic, we were sent home to be independent. Whether they wanted it or not, mom and dad had a new houseguest beginning last Wednesday. For the next 72 hours we navigated the early days of this new way of life.

On PD, the patient is attached by their catheter to a cycler.

Your dialysis prescription determines the length of time, the amount of fluid and the drain volume. Ideally, patients hook up at bedtime and cycle all night, waking refreshed and with a successful treatment completed. We learned quickly that treatments are not always smooth. Imagine being on an IV in the hospital that alarms every 1.5-2 hours. Not exactly restful sleep. Your position matters. Your drain flow matters. It all matters. Dad is on a “short” 8 hour cycle. As I have read and met people in support groups, some dialyze 15-16 hours a day. This machine is literally life support. Without daily treatments, the toxins in the blood will poison your body. Kidneys are vital. In ways that I did not even know.

So what’s my point in telling you all of this?

Perhaps you like to learn and this is fascinating to you. Yeah! I shared wisdom.

Perhaps you know someone on dialysis and you have no idea what life is REALLY like. Ask them. It can be very isolating.

Perhaps you know someone who is a caregiver of a chronically ill person. Love them.

There is nothing that reminds you that life is not “normal” like 41 boxes of medical supplies sitting in your home. What was once a storage for seasonal door decor is now boxes and boxes of solution. I can assure you that anyone loving someone in the midst of a medical crisis is impacted in ways that you will never know.

But above all else, I write this because WE NEVER KNOW. We never know what someone else’s JOURNEY is like. We don’t know the fear or the pain. We don’t know how much sleep someone has missed or how much worry has kept them from being soul settled. We don’t have a clue how finances have been affected. We don’t know what hard decisions have been made. We don’t know what part of their world has recently died in light of their diagnosis. We don’t even know if when they say that they are OK they really are. More than likely, they are just so damn tired its easier not to get into it. What if this week, your question to the person that comes to mind in reading this could be, “What was the hardest part of the past few days for you?” That question in itself says cut the BS, I want to know how you REALLY are. 

When I got home yesterday, I sat. I looked at my kitchen and kids and laundry and just sat. I have spent the last 24 hours trying to find words to describe what it’s like wear a mask in your own bedroom. I’ve thought about the drain that now runs behind my parent’s bed and disposes of the life sucking toxins that pollute my dad’s body. I have seen how everything – from foods, to schedules, to meds to doctors to driving – has changed in the 6 weeks that are 2018. Medical decisions and treatments are not new to us, but up to this point, everything has been “temporary”. Unlike many on dialysis, dad is not a candidate for transplant. This is our new normal. And I say “our” because when you love someone, you jump right in with both feet into the deep, deep well of heartache and pain and change.

Originally, my plan was to stay with my parents on Wednesday and Thursday nights and return to League City on Friday. Thursday night was not easy, so I washed some clothes and stayed Friday. As we talked about how I didn’t NEED to stay, I was reminded of all of the times that my parents didn’t NEED to take care of me. Times when they could have easily said, “you are an adult.” But we are never too big or too strong or too capable to be loved. And that is what working puzzles and trying to cook and advocating with nurses and changing dressings looked like this week. Next week, it may be something else and I will be here because once you peek into the unknown, you can’t go back.

And come hell or high water, my people will not go into the unknown alone.

I have learned after almost 43 years that I am quick to jump to irritation. I often default to (what in my mind is righteous) indignation. Therefore, I have waited a week to let these thoughts marinate prior to releasing my wrath. But I could not let them go. I have been more fueled than ever to put them on my computer as they have mulled in my mind and heart. Here is my forward:

This is not a moralistic rant. This is not coming through a lens of a parent that is raising sheltered kids. This is not even aimed from my place as teacher or church leader. This is a middle age mom and wife making a plea to her generation to think. Stop and think. What we say and do matters. Please, stop and think.

Our family loves live music. My oldest daughter and my husband will never find themselves at a daddy/daughter dance, but they don’t miss the opportunity to hear and experience the best of alternative music together. ALL THE TIME. This love for a good concert has been nurtured in my household. I’m a bit obsessed. I’ve seen everyone from Garth to JT to Bon Jovi. I have flown far and stayed up late to see many a good show. Last year, AJ added more than 50 bands to her 2016 checklist. We love a good concert. All this to say, we do not shelter the music of our kids, live or recorded.

I think that is important to say upfront because you need to know that my kids have learned the smell of pot from fellow Mumford and Sons celebrants. They have witnessed pat downs from festival entrance points. As a helpful tidbit, they even know that drug dogs can find your weed in your dreadlocks, too. We think these are life lessons. We are there with them. We don’t avoid or look away. We talk about choices and consequences. In the same way we do with topics on TV and in movies and with friends. We allow our kids to see grown up things. So when they hit the age that their musical tastes advance from Disney, we moved from Dora to Taylor Swift shows. Perhaps Adam Lambert at 9 was a little far, but she loved it! #glambert4life

Our oldest turned 16 this week. One of her all time favorite bands is The Killers. For those that need a little refresher, they are a band that has had huge hits like “Mr. Brightside” and “Smile Like you Mean It” that both were released the year that AJ turned 2. They are not a new band, but they have new music and it is still great. Really great, I might add.  She saw them at ACL this year, and for her birthday, her dad bought 4 tickets to see their new tour. And it was a show. Such a good show. “Somebody Told Me” sounds just as good live as it did when Lucas sang it to me in the truck in 2004. The concert was amazing. But the fellow concert attendees….well…

While there were certainly some teens with excellent alt music taste that were excitedly attending the show, the vast majority of the fans were born in previous decades. My best guess places most of the fans firmly planted in Generation X. There were some Millennials, sure. Good taste in music is not bound by age. But for the remainder of this conversation, I cry out to my fellow 40-somethings.

Our kids are watching us. Other kids are watching us. Strangers are watching us. And how we act and play and live and love and celebrate matters. There have been very few times as a parent that I have wanted to deconstruct what my kid has seen more than I did that night. And, again, my kid is not naive. She has seen the things and read about the things. All of the things.

But this night in particular was something different. The venue was “nice”. The fellow concert goers looked much like her mom and dad on the outside. They had on Toms, and big earrings and mom bags. There were some that had obviously traded in the LuLaRoe leggings for the skinny jeans and spent some time getting fancy-ier. Thats what we do right? Its rare that we get a night to be grown ups and hear bands that remind us of the times when were young(er) and hip(er) and could stay up past 9pm. Ah, the days.

All of these are great things. I love those nights, too. I had one the next night with my hubby at a wedding. It was great. But here is where things went sideways. The ladies behind us were having a girl’s night. Before the show, the talk was PTA and kids and mom stuff. The group of guys that appeared mid-set were husbands and dads with starched dress shirts and loafers and lovely wedding bands. These groups did not know each other upon arrival, but after a few hours and a few tall boys, songs from their younger years provoked sloppy flirting. The number of impaired drivers was horrifying. The aisle mates that could not refrain from the 4th or 5th trip to the bar even when they clearly should have been cut off at the 2nd was heartbreaking. The really telling part of the night came when my BABY looked at me and said, “I feel safer at concerts with college kids than I do with this crowd.”

Drop. The. Mic.

Moms and dads and friends – we must do better. We must find ways to safely and responsibly enjoy the things that we enjoy without spreading fear and unease to others. We must value our marriages in a way that we understand that we don’t take (nor do we WANT) a “night off” from the covenant that we have formed. The way that we interact with others matters. The way that we talk to someone else’s spouse or put in harm’s way someone else’s mom matters. It matters to those around us, it matters to the health of our heart and it matters to the next generation that is learning from us what it means to be grown-ups.

My daughter still talks about the freshmen (one UT student and 2 Baylor girls) that she befriended at ACL. For hours they stood together and talked music and life and had fun. I was a Baylor student. I had plenty of fun. I know that most in this age group have tinkered with the very same temptations that those around us at The Killers were enjoying. The difference, however, was stark. They were not falling on anyone. They were not invading her experience with their lack of control. We must do better.

Can we commit that we will honor each other by remembering that our actions are not in a vacuum? What we do and say matters. Our world needs us. Our kids need us. Our spouses need us. My commitment in writing this post is two fold. First, we need to talk about this. I think the only way we shine light into darkness is to be willing to flip on the flashlight. Second, I know that for some of us, we don’t know how to start making steps toward changing these norms in our own lives. If that rings true for you, I am here. I am passionate about this topic because I have failed in this area so many times. But I have learned that there is life and joy and so much fun to be had when you live into the best version of yourself – at concerts and in every moment of everyday.

We had a thing happen this week in our house. On Tuesday night, we were preparing for bed and my youngest came in to my room. “Something is wrong.” The tone of voice used to say those 3 words led me to believe that there was a visiting cockroach or perhaps a clogged toilet. Then things took a very different turn. The annoyed fussy tone turned to a shaky tear filled one, as the cause was established. In going to feed her hamster Missile (aka Missy Franklin), she discovered that she had crossed over to hamster heaven.

Grief. This word is one that many want to avoid. We don’t want to even talk about it, because doing so admits a loss. Grief is something that I historically fail on all fronts. I have been known to cover my feelings, stuff my sadness, turn tears into anger and power through with work and busyness. There is a reason that books and classes and sessions and lectures have been constructed around the “work” of grief.

You would think that as a do-er, I would enjoy any kind of work. This is false. Doing the hard work of grief is the opposite of what I enjoy. Grief requires you to stop. Stop moving and fretting and planning and caring for all. Stop going and calendaring and nursing. The hard work of grief is done in the sitting. In the meditating. In the music. In the journaling. In the thinking. In the praying. In the release.

When you are in the midst of get-er-done, there is little time to stop and think about the small daily losses. The loss of dreams. The loss of touch. The loss of filling water bowls. In the day-to-day task driven world that we live, being present in the moment and not just blowing past the little things has created some of my greatest opportunities to face grief.

This past Sunday, I was enjoying the singing and familiar faces of my church. I had been away for a few weeks and I knew that for that hour, I was going to slow down. I was going to be with those that give me permission and an invitation to pray and think. I was prepared for the music to stir my heart and perhaps my tear ducts. What I was not prepared for was my trip to the coffee bar. It was during an introvert’s most hated 2 minutes of the week – the greet your neighbor moment. In an attempt to avoid having to speak, I was refilling my motor oil when a familiar voice casually but lovingly asked, “How is your dad?”

I honestly don’t know if I said a word. But in that second, a wave of grief breeched the dam of hard ass that I have been sporting for the last few weeks. My hold-it-all-together-for-everyone-especially-myself  was overcome by the many moments that had happened in waiting rooms and dialysis centers and hospital rooms. Ones that had occurred in elevators and car rides and in ice filled parking lots. And without time and space to process and grieve, I have had many experiences, much like my go-go gadget 12 year-old, where I have been stopped in my busy tracks by moments of what can only be described as grief. There IS something wrong. And without the intentional moments to stop and say it out loud, this crazy journey of life can spin out of control.

And here is the crazy part of grief. When you say it, when you claim it, when you sit with the truth, you FEEL better. In the way that only stillness and listening can provide, being present in grief is healing. So why do I resist? I resist because I don’t like to do anything that requires me giving up control. Ever. But I cannot control blood pressure or oxygenation levels or creatinine. I cannot control dialysis schedules or wound healing or possible infections. I cannot control what is yesterday and I sure can’t control what is tomorrow. So for today, just today, I will choose to be right where I am supposed to be. At the corner of grief and the promise of hope.

Last night I received a call from one of my childhood pillars. She is wise. She is admired. She is one of those people that you just don’t mess with. As my dad’s oldest sister, she rules the roost. And by roost, I mean that if you carry her bloodline, you will be expected to mind your manners, be attentive to your faith and tend to your business. We call her Ebby. She is a one of the strongest, most determined and most opinionated of our lot. You just don’t cross this red headed powerhouse in her 8th decade of life. And should you dare, my best advice would be to do it when she is not looking, listening or perhaps is on one of her many trips around the world. In that case, you may have a few days to hide the evidence.

From the tales of their childhood, Ebby was half sister, half dictator. With the love and care of a warrior protector, she has been in charge from the moment my Aunt Sarah, the second child, was born. And when my trouble making daddy came on the scene, she was a mature elementary school girl with the worldly knowledge to keep him in line. This path of empowered dictatorship was passed on to her nieces and nephews. We adore her. We also roll our eyes at her, but only when she has turned her back on us. There is not a doubt in any of our minds that in our 40s and 50s, we are still fair game for mouth washing, downright disagreement and a good long lecture on the err of our ways.

We not only tolerate these things, but fully expect them, knowing that on many subjects our worldview is just different. There is one thing, however, where we all stand in agreement. We protect each other fiercely. From our Granny Bain, we each inherited a powerful fight for family. We were taught to drop our differences at the door. Around the kitchen table, good cooking – and especially homemade rolls – were the uniting force of all things powerful. From the roots of her children have grown families that exude strength, hope and stories of redemption and connection. But the most important ingredient in our recipe is love. We don’t all look the same. We don’t all think the same. What others see as differences, I celebrate as the fullness of our story.

When I saw Ebby’s name on my caller ID last night, I was running my first good bath in far too many days. I had one child grounded in her room and the second in the midst of a Friday night study session. My bathroom was quiet. The water was on and the need to drown out my world was heavy. But to get her call on a Friday evening was unusual, so I answered.

“Lac-eeee!” she said with her strong East Texas twang. I immediately had a smile. She was calling to check on Daddy. She was hoping to catch me at my house so we could talk about a few logistical issues. You see, this is not her first rodeo. Ebby lost two of the most beloved people in her life in one year. In December of 1998 she buried her mom and lifetime sidekick. In May of 1999, she lost my Uncle Dado, her great love. With the passion of a tender pit bull, she led our family through a devastating year with grace and instruction. We learned from her. She taught us how to fight and love and grieve.

I had been married for less than a year, and I will never forget the lessons she gave me in that season on marriage. I can remember at the tender age of 24 that I had so much to learn from those that I respect. So for the last 20 years, I have listened and watched and modeled and tried to weave into my life the same strength of family that she, my aunt and dad have lived before me. We are so very far from perfect. Matter of fact, that is what gives me the greatest hope as I set out to launch my own kids. We stumble and fumble and hurt others feelings. We are so very human. But we are also committed to the long haul. We come back. We forgive. We return to the table and eat rolls together and laugh and show up when we need each other.

As we finished the checklist of “to-do’s” (I may have learned that from this master oldest child, as well), she said something that I will cling to forever. In her slightly cracking voice, these words blessed my phone,“You are standing by your Momma and helping your Daddy. That’s high praise in my book.”

This season is hard. And I feel as if I am constantly short changing a spouse or a parent or a child or a friend. I struggle to communicate and ask for help. So my immediate response to Ebby was guttural. “I needed to hear that.” Because I did. We all do. We need to hear from those that matter to us. We need to comprehend what they are saying as they encourage us. We ARE doing exactly what we need to be doing, whether or not it feels right. Because when life is hard, it does not always feel right. It feels messy and scary and unsure. And on those days, especially, we need to gather the pillars and we need to lean into their strength. May we know that there is support to get through today and tomorrow and wherever this JOURNEY may lead.

I can remember the day that it began. My sister was a teacher at River Oaks Elementary and I took my brilliant and helpful 2 year-old to help her set up her classroom. That 2 year-old turns 16 this month, so my feeble math tells me that more than 13 years have past since my mom, sister and I sat under the tree at ROE that day and I first heard that there was a problem with my dad’s white blood cell count.

Fast forward through more than a decade of heath care blips, 4 wonderful and determined oncologists,  countless bone marrow biopsies, a diagnostic trip to Mayo Clinic in Minnesota, kidney biopsies, 5 types of chemo, bone scans, and thousands of blood tests. If you have ever met my dad, you know that he is one of a kind. I have never met anyone that can combine profound and ridiculous thoughts into one conversation like Frank. Bully, Bully.

Unfortunately, his body and it’s quirky medical gems are equally as novel. After being seen by some of the smartest doctors around, I have learned that you do not want to be medically unique. I think the next person to use the term “unusual” or says “this is first time I’ve seen this” or “you don’t fit the norm” may receive a collective boot up the tailpipe from all 3 of the Bain children. With these words come treatment options, but really these are just educated guesses. They bring about more questions than answers. They bring on head scratching and the common feeling of wheel spinning. I’ll leave out the long names and the complicated challenges and summarize this 14 year adventure with an image. The Texas Cyclone.

If you are over 30 and a native Houstonian, you know exactly what I mean. The Cyclone was a large wooden rollercoaster that proudly took the breath of riders for almost 30 years. Located on the 610 South Loop in Houston, this fear inducer boasted a 80′ drop and packed tears, screeches of terror, laughter, joy and accomplishment into a 2 minute ride. That image completely incapsulates the last decade and a half of trying to get to the bottom of a myeloma protein that has attacked my dad’s body.

Today was a milestone. A new step in the JOURNEY. In December, we faced the reality that the kidneys were not able to be salvaged. The damage was too far reaching. After an unplanned twist in our best intended plan, an emergency forced a new fork in the road. This afternoon, my dad received a port and began kidney dialysis. With the miracle of modern medicine, today is possible. But in many hard ways, today changed our lives forever.

The details are murky, the road ahead is not super clear. But what I can assure you is that once again, I have been brought to my knees by the grace and love of the people in my life. Today, this is particularly true of my parents and siblings. These four humans are extraordinary. I wish it did not take days like today for me to realize the gift in front of me, but I need to stop and set a marker on this date in the JOURNEY.

The strength and laughter and faith and hope and shared fear and love and freaking fight of this family of 5 is something else. As we cooled our heels today waiting (hospitals are a great place if you need some practice in this department), my dad made continual laughter possible. My sister balanced her many plates and one of my favorite moments was looking around the room to see her – in full school administrator professional dress – lying in my dad’s hospital bed. When they took my dad to connect him for the first time to dialysis machine, my brother provided my dad with food and Baylor basketball as a perfect distraction. Oh, and they both kinda like each other, so that helps a little.

And then there is my Mom. Oh, this Diet Coke sucking, Pop Tart eating, hoodie wielding Mimi of strength. She is tough and loves hard and is living before her kids what marriage is all about. She doesn’t leave him. Not physically. Not emotionally. Not even when he would probably enjoy a quiet room. She has spent more nights on hospital sofas than her back should allow. She learns and listens, and best of all approaches each decision with Dad’s desires and best interest at heart. The last 47 years of her life are a living love letter.

As my dad’s kidneys have failed, his body has filled with toxic fluid. Dialysis removes wastes and excess fluid from the body so you can live. As I watched Mom, Dad, Liz and Bo today, I was reminded that they have been a similar filter for me throughout my life. They are my original dialysis unit and they have helped me develop a skill set and team of people in my life that continually point me to a cleaner and more whole way to live. The path has not always been straight. The adventure factor has been high. And for all 42 years of my life, they have been the place where I need to reconnect when things get murky and confusing and full.

Today was a huge day. Today was a hard day. We will never go back. And neither will I. I have been gifted a team, a precious, precious, team of filters. They come in every shape and size. They have spanned my lifetime. They have taught me the best and the hardest lessons. And they have allowed me to live another day with a bit more energy and clarity to face what may come.

So, we buckle up for the next drop or twist or turn in our roller coaster. Together.