Walking with my Mom

 

My mom is pretty amazing.

For starters, she’s been the source of unconditional love and support to me and our family throughout our lives.  She has always believed in me and encouraged me to pursue my dreams.  She has always been there to comfort me when things were tough and listened when I needed to talk.  She’s everything I could want in a Mother.

 

But it’s more than that.

She’s a beacon of strength.  For the past 3.5 years, she has been battling stage IV Sarcoma.  The diagnosis would change our lives.  It started with pain in her arm at the end of 2013.  

 

We are an athletic family, and being a competitive tennis player, she initially thought her muscles were sore.  When the pain continued to intensify, she eventually consulted a doctor.

 

That’s when we discovered it… a 15cm tumor in her left arm.  It was so big, that doctors estimated it had been growing for two years prior to it’s discovery.  Sarcoma is primarily treated through surgery, so a procedure was expedited to try to remove the tumor.  After surgery, radiation followed, and we were optimistic that the procedures could remove the Cancer from her body.  After all, she was receiving the best treatment from the best doctors at one of the best Cancer Hospitals in the US (UC San Francisco).

 

In addition, my Mom took the battle very seriously.  Her diet, already quite healthy, became 100% organic and consisted of lots of vegetables, fruits, seafood and other superfoods.  She went to bed early, gave up the occasional glass of wine and walked twice a day.  She talked about her recovery and made plans for the future.

 

However, when she went back in to be scanned, we discovered the Cancer had metastasized to the lungs and liver, and later to the brain.  In the last three years, she has undergone six different chemo drug treatments, lost her hair, had someone else’s hair grow back, lost it again and had a third person’s hair grow back.  She’s withstood four different radiation procedures and eight surgeries to her arm, liver, spleen, both lungs, kidney, esophagus, and brain.  She’s an anomaly amongst Cancer patients.

 

I wasn’t prepared for this situation and the emotions that came with it.  In my life I have had many experiences.  I’ve become educated, played competitive sports, traveled the World, made friendships, been in love, and started a business.  I’ve had successes and failures.  But I’ve never faced a challenge where I felt powerless to affect the outcome, until this.

 

I had lived my life on the premise that I can overcome any situation with intellect, logic, and determination.  Learning that the best medical, oncological, and integrative care, combined with exercise, sleep, diet, and family support were still not enough to make any impact has been confusing and confrontational.

 

It has taken me a long time to acknowledge the danger she is in as being real.  Since she is a superhero in my eyes, I believed each treatment would be successful and that recovery was near.  She was taking a new clinical trial drug that had showed some promise with Sarcoma patients.  Then, just after her birthday on March 27th, she went into Septic shock on March 31st, causing her to be hospitalized and new lesions to be discovered.  As new complications arose my denial turned to anger and depression.

 

As I experienced these emotions, I searched for how to process them.  I didn’t want to feel, because feeling felt so bad.  Sometimes I buried myself in my work.  Sometimes I avoided the gym.  Sometimes I stayed up late so I was too tired to lie awake with my thoughts in bed.  Sometimes I drank a little too much.  I wanted to run away from the pain.  It felt so unfair – my heart went numb.  I made some choices that hurt the people I love the most.

———–

It’s a Saturday and we’re about to leave the USAW meet.  My mom had checked into the hospital a few days earlier due to labored breathing.  I get a message from my Dad that her oxygen dropped so low that they had to perform an emergency intubation, inserting a tube into her throat, knocking her unconscious and putting her onto a ventilator.  I collapsed to the ground – I had just spoken with her a few hours earlier, and now I wasn’t sure if I ever would again.

 

She stayed comatose for 36 hours, as we waited until Monday to speak with the right specialists.  I arrived that afternoon.  While I was on the airplane, my Dad had met with a pulmonary specialist and come up with a plan.  The Dr. believed he could freeze the tumor and possibly remove it.  If it didn’t go smoothly, it would be fatal, but if successful, it may unrestrict her breathing.

 

For hours we remained in the waiting room.  We talked about Mom, and accepted that we may not see her again.  We spoke with a social worker about death and the funeral process.  I reflected on my life and my relationship with her.  Finally, the Dr. appeared – the surgery was successful and Mom was in the ICU for recovery!  I went to see her.  Seeing her in that condition was sad, but also joyous and overwhelming all at the same time

 

The next few weeks would be both difficult and amazing.  They told us we could not know what to expect when they tried waking her from anesthesia.  She could have sustained a brain injury from low oxygen or not be able to breathe independently.  Every step involved complex emotional decisions about resuscitation orders.  

 

But when they took the tube out she took a breath.  It took two more days for the sedation to wear off enough for her to be able to say any words or understand her surroundings.  Slowly, she recovered her speech and started thinking more clearly.  She hadn’t eaten in ten days due to nausea and stomach pain.  For three days she tried to eat and for three nights she threw it up.  The doctors told her she wasn’t going to be able to eat enough to survive and wanted to give her a feeding tube.  I didn’t think she could eat either, and I begged her to do it, but she refused.  She had had enough tubes.  I cried in despair.

 

But then something happened.  The next day she tried eating again and she didn’t throw up.  Three days later she ate more and continued to keep it down.  She started to get stronger.

 

I came to the hospital a few days later.  Mom had been confined to a bed for two weeks.  When I approached her room, I saw something amazing… she was standing! And taking a few steps with the help of two physical therapists and a walker.  I said to her:

 

“Mom, you’re amazing! I can’t believe you’re walking – I’m so proud of you.”

 

She replied with a smile, “Yep, I’m training for a 10k!”

 

Her positivity in the face of such difficult circumstances is inspiring, and it amazes me that she is able to demonstrate such radiance and determination.

 

I’m at home right now.  Inside, my mom is meeting with the Hospice Chaplain, Bette.  After spending two weeks in the hospital plus a week in a skilled nursing home she was able to come home.  I’m sitting outside in the backyard, writing.  It’s beautiful here.  

 

We’ve had many great conversations lately, ones where I’ve received wisdom, advice, and love.  Staring death in the face, and the ongoing high stakes bring a new level of intensity to my listening.  I feel open, reciprocal, and wanting to absorb all I can.

 

We’ve talked about plans for the future, what her wishes are, and I’ve heard stories from her life I never knew before.  Despite being in a lot of pain, she is able to sit and even walk a little for several hours a day. Bette asks her, where does she draw this strength?  Mom talks at length about how much she loves her family, and how she wants to have more time with us.  She also says that she comes from a long line of fighters, and she feels she wants to carry that torch.  We just don’t give up easily, a trait I have inherited from her (and my Dad).

 

My Mom has a certain fearlessness that I admire and can’t fully comprehend.  She says what she feels, she tells me what I need to hear, she expresses herself clearly and she doesn’t spend much time worrying about death.

 

After ruminating on this for a while, an idea struck me:

 

What if I lived as if I was dying?

What choices might I make differently?  What might I say or not say to the people I care about?  Am I on the path I envision for myself, and do my choices and goals align with that vision?

 

The fact of the matter is, we have only a finite amount of time to accomplish everything we dream for ourselves, and we don’t know how long that will be.  So if we’re going to make an impact, we better live with a sense of urgency.

Get busy living, or get busy dying.” -Andy, The Shawshank Redemption

 

I’ve had the unique opportunity to spend extra time with my Mom, time that I may not have gotten, and I’ve learned the following so far:

 

Family Is Number One

My mom cites her main reason for staying alive is she wants to spend more time with her family, and now I get it.  I’ve always been close with my family, and for a long time that was enough.  I held off on starting my own – I’m very ambitious, and it was easy to focus on career and achievement instead.  I’m really happy for all the experiences I’ve had.

 

But now I can see, plain as day, that I want my own family.  I want to create the experience that my family has with me, and I want my future children to have an experience like I did growing up and still do with my folks.  I’m excited to create the possibility of my own family.

 

A Positive Attitude > Anything

No matter what medical information my Mom has received, she has always believed in her recovery.  She even jokes about the 10k she’s planning to run and returning to the tennis court to defend her club championship. She’s a celebrity at the hospital amongst the nurses and doctors because she’s so damn polite and pleasant, no matter what.  Her strength lies in her ability to transform pain into grace and fortitude.  She doesn’t suffer a lot because she chooses not to.

 

I have encountered some big challenges in my life too, and at times I have felt down about a situation. And in some of those situations, I have complained, sulked, blamed, or even lashed out.  I’m not proud of those times.  But I realize now that while I may not have control over a given situation, I have a choice as to how I’m going to react to that situation.  My Mom has shown me that maintaining a positive attitude can not only help me survive a situation but also achieve joy and quality of life regardless of the circumstances.

 

Live As If You are Dying – Be Kind and Love Urgently

You don’t know how much time you have, or how much time you have with other people.  Be kind to your people, love your people, and love them urgently.  This one is simultaneously exciting and hurts the worst.  Due to the circumstances, my conversations with my Mom have been kind, loving, and urgent.  I listen carefully and am generous with my presence.  She can feel it and she appreciates it.

 

I can acknowlege times in my life where I haven’t been as kind or loving as I could be.  I haven’t always listened as well or been as present as I could be.  For most of my life I have dealt with my emotions internally and I haven’t always noticed the opportunity to process them externally with support from the people who love me.  From the bottom of my heart, I am sorry.

 

In acknowledging this regret I am aware of another possibility.  If life always went the way we wanted it to, we would never learn anything new.  How then, would we ever grow into our best self?  Just like in training, we would never learn any new skills if we knew how to do them all already.  Setbacks in life do not need to be considered failures because they are also opportunities to grow.

 

I know how I want to show up in this world.  I want to show the love I have inside me to my people and others around me.  I am committed to being generous with my listening and presence,  I am committed to loving openly and urgently, and I am committed to kindness.

 

In Reflection

As I set out to start this week, many things lay in front of me, projects, employees, members, family and personal relationships representing many different priorities.  Here’s what I have to say about it:  I will accept these challenges with an open mind, a positive attitude, and view each one as an opportunity to learn.  I will be kind to myself and others and show up as the type of leader I say I am.

 

I love you, Mom and Dad.  For teaching me what family is and how to take care of myself and one another.  For showing me how to be a good person by leading by example, encouraging me, and letting me know if I was off-track.  For always supporting me, cheering my biggest victories and helping me regroup after setbacks.  For serving as my North Star as I navigate the ocean of my life.  I am so lucky to have you both.

 

I love you, Paige.  For your magnanimous spirit, your passion for life as well as your compassion.  For your emotional brilliance and showing me how to love boldly.  For being self-made, for being selfless, and how you add value to everyone in your life and mine, as well as the Foundry community.  You have helped me to learn about myself and grow as a person.  You are the most caring and generous person I know.  In all of my adventures, knowing you is the best experience I have come across.  Thank you for being a part of my life.

 

And to our coaches and community, I love you as well.  Thank you for doing something that is hard, but worthwhile.  Thank you for believing in me and in this place.  Thank you for pushing yourself to improve and standing for those around you.

 

Life is not perfect.  The Foundry acknowledges this and is about creating better humans.

 

I couldn’t be more excited to be on this wild journey with all of you.

 

-Justin Quandt

CEO

 

Dedicated to my Mom, Linda Quandt.