Saturday, January 16, 2016

525,600 Minutes

525,600 minutes, 525,000 moments so dear. 
525,600 minutes - how do you measure, measure a year? 
In daylights, in sunsets, in midnights, in cups of coffee. 
In inches, in miles, in laughter, in strife. 
In 525,600 minutes - how do you measure a year in the life?
How about love? How about love? How about love? 
Measure in love. 
Seasons of love.
~"Rent" written by Jonathon Larson


Certainly the past 525,600 minutes of my family's life - and I choose the singular "life" because I'm thinking of the collective life of my family - have been among the most significant we've ever experienced.

Cancer
Marriage
New Jobs (Jess and Rusty)
Cross Country Move (including newlyweds living with wife's parents for two months)
Old Jobs (managing ours through a tumultuous year)
Death of a Parent
Significant Illness of another Parent
Sudden death of a friend
Sudden death of yet another Parent
New Puppy


I love the musical RENT.  I love musicals, and theatre, and books, and story telling.  This year, we have quite a story to tell.

Alex's favorite musical (mine and John's too, for that matter) is Wicked.  He's seen it three times.  Once, he got to meet the actress who played Glinda and she took us on a backstage tour.




Alex's sister, Jessica, and John's cousin, Lynn, sang "For Good," from Wicked for Alex's high school graduation.

I could associate a musical theatre song with every major life event or emotion I've experienced.

Which brings me back to 525,600 minutes from RENT.

It's just a year since I found the lump under Alex's chin.  The enlarged lymph node that it would take nearly four more weeks to learn was cancerous.

In the past year, I've learned more about cancer than I ever wanted to know.  I've learned a whole new language. I know now that the various seemingly random symptoms Alex was experiencing weren't random, they were classic Hodgkin's Lymphoma symptoms.

I've learned that my family can be shaken, but not broken.  I've learned that we all can be as strong as we need to be.

But this past year wasn't just about cancer.  Cancer was simply the eye of the storm.

At first, we tried to integrate Alex's cancer treatments into the rest of our lives.  John and I continued to work, Alex continued to live at his group home.  We tried to "keep as normal of a routine as possible," as his doctors suggested.

Jessica flew home every few weeks.

We continued to plan her wedding to Rusty.

In April, John's mom passed away have almost four years of living with the ever increasing effects of Alzheimer's.  She had lost her ability to communicate, and we have no idea if she recognized us in her final months.  John and Allison sat vigil at the end, and John and I were with her as she drew her last breath. Allison and Tom walked in moments later, followed by LaVerne's sister, brother, and her best friend.

We had to schedule her funeral around Alex's chemo.  John and I missed a week of work, going from funeral planning to funeral to chemo.

A few days before the wedding, a family friend died in a tragic plane crash, leaving behind a wife and two young sons.  They were supposed to be at Jessica and Rusty's wedding.  Newly widowed, our friend came to the pre-wedding BBQ to give Jessica and Rusty their congratulations and to tell them to cherish every moment.

Jessica and Rusty's wedding happened on a chemo week.  But by then, chemo had become a family event. We spent the day filling out table cards, acting silly, and laughing in Alex's treatment room.  

Jessica and Rusty were married on a picture perfect golden Saturday in June. Alex stunned us all at the wedding festivities.  He was so happy for his sister, he just beamed.  That weekend could not have been more perfect.

By June, we were looking forward to the end of Alex's chemo.  His final chemo treatment was at the end of July.  Jessica came home for AirVenture and for Alex's last chemo.  He rang the gong, and he was met with a crowd of friends as we left the oncology office.


During the happy month we were sure Alex had beaten cancer, Jessica received an unexpected job offer in Wisconsin.  She and Rusty had just moved into a new home in California, and Rusty had just started a new job.  The offer was a wonderful professional opportunity, and they decided that they were ready to leave California.  So, less than two months after their wedding, they left their jobs, took on new jobs, and moved across the country.

During that same month, health issues that my mother had been dealing with for a couple of years came to a stressful and difficult climax.  She tried to maintain her independence as long as she could.  My brother and I had been trying to help her for quite some time, but ultimately she resisted our advice and made decisions that were not in her own best interest.  Her healthcare power of attorney had to be activated, and I had to figure out new living arrangements for her.

I got my mom situated and Alex had a follow up PET scan just as I went back to school for the year.

A week later, we went to the doctor for the results of the scan.  We were certain we would receive good news.  We did not.

We had to go to a lymphoma specialist and begin the process of more chemo and preparation for a stem cell transplant.  The treatment plan would require us to move temporarily to an apartment near the hospital.  We would take turns sleeping in Alex's hospital room.  I had taken an extended leave of absence from teaching that begin in mid-October.  John kept working, but he made arrangements to work remotely and take unpaid time off while Alex was in the hospital.  At first, we planned that i would go alone, and John would stay home and work.  It became apparent that we needed to stay together.

As we were dealing with this news, and trying to figure out the treatment plan and what to do about work, Jessica and Rusty arrived with their dog.  They moved in.  It was great to have them here.  They were very easy houseguests to have, but it was clear that Jessica now felt like a visitor in her childhood home.  They both started new jobs, with Rusty working from our home.  They sold their California home and bought a new home near Jessica's work.  They moved in the week and a half we had in between Alex's stem cell collection and going to the hospital for his transplant.

As soon as they settled in to their new home, the took our dog for us when we went to the hospital with Alex.  Our Christmas and New Year's were spent in the hospital.


The day after Christmas, Jessica and Rusty picked up their new puppy.  A few days before they left to pick up the puppy, their dog came down with kennel cough.  They picked up the puppy, but they had to isolate the puppy from the other two dogs for a week.  They kept the two dogs at our house and the puppy at their house with one of them at each place.  They were all back under one roof in time for New Year's Eve. They had a party at their house to celebrate New Year's.

As New Year's approached, we all talked about how glad we would be to see 2015 go and that we were hoping for better things in 2016.

Shortly before midnight, I got a text from Jessica.  John was sleeping at the hospital, and I was staying at our temporary apartment.  (We took turns staying at the hospital with Alex.)  She called me.  Rusty's dad had died suddenly and unexpectedly.  At that point, they didn't know the cause.

It was another blow in a long line of too many blows in the last year.  Rusty left for Denver, and Jessica followed a few days later.

Alex's transplant went extremely well.  The doctors were thrilled, and he ended up being released from the hospital only 11 days post transplant.  We went to the temporary apartment, and the doctor released us to come all the way home only 14 days post transplant.

As he continues to recover at home, I reflect on this past year.  

Clearly, Jessica and Rusty's wedding and the unexpected move to Wisconsin are the highlights; happy events that our family desperately needed.  They begin their lives together in a new home, with new jobs, a new puppy, and lives full of potential.  My daughter now lives a 35 minute drive away, after almost nine years of living at least 1,500 miles away.

Alex's cancer has proven to be formidable, but so has Alex.  His treatment has been tough, but he is unwavering.  He is an amazing example of resilience.  He will have a PET scan in a couple of weeks to see if his treatment worked.  We expect that there will still be treatment in the coming year.  He hasn't kicked cancer yet, but he's still here, and he's still fighting.



We've suffered terrible losses, saying good-bye to people we loved very much.  We move forward, taking them with us, remembering the lessons learned from those relationships.

What will the next 525,600 minutes bring?

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