Monday, February 29, 2016

Empty Nesters, 2.0

It's been more than three weeks since my last post.  We've ventured out of this cocoon of cancer treatment and back into some semblance of our "normal" lives.

It's a little bit harder than I thought it would be.

Don't get me wrong, I am grateful, but I've had to muster all this energy for the fight, and now I'm not sure where to go with it all.

Alex is back at his group home and doing well.  Anxiety is an issue; most days he seems to do alright, but some days are just rough for him.  Anxiety is an issue for cancer patients, even those who didn't start with an anxiety disorder, so it's no surprise this is a challenge for him.  We see his psychiatrist next week for the first time since before the transplant, so the timing is good.

Right now, I have to figure out this whole empty nest thing again - "empty nesters, 2.0."

When Alex moved out, it was a huge adjustment.  The thing is, Alex needs round the clock supervision.  Usually, teenagers become increasingly more independent so that when they move out it's not quite so shocking for their parents.  Jessica was so busy her senior year, I sometimes felt like a barely saw her.  She had school, a part-time job, and school activities.  She kind of eased us in to the transition of her going away to school.

She chose to go to school in Boston.  We were thrilled for her and loved visiting her there.  When she decided to go to school so far away, we decided we would visit her at least twice a year.  She came home on school breaks.  Considering how far away she was, we saw her pretty regularly, but it was hard to have her so far away.  Then she got her dream job - in California.  She moved from one coast to the other.  We made travel a priority.

When Alex moved out, it was more similar to your toddler getting his own place.  For the first time since we had children, we could come and go with ease.  The freedom was nice, to be honest, but it felt strange.

The whole routine of our day changed.  John and I had only ourselves to get ready in the morning.  Not having Alex to make breakfast for and help get ready in the morning freed up an hour.  We no longer had to worry about unexpected things coming up at the end of the work day that would delay us in getting home.  When Alex still lived with us, we had to be sure to be home when his ride arrived bringing him home from his adult day service program.

When Alex got sick, obviously that changed everything.  For the first six months of his treatment, everyone's schedule revolved around Alex's chemo.  Jess flew home several times.  John and I worked as much as possible.  Cancer dominated everything. Alex continued to live at his group home, but he spent the night before every chemo treatment and procedure.  We also tried to fit in visits that did not include cancer treatments.

Little did we know, that first six months was only the dress rehearsal.

When we learned that the chemo didn't work and more treatment was required, we could no longer try and pretend to keep the rest of our lives going.

We had a month where we thought Alex was better.  We were sure his follow up PET scan would show his cancer was in remission.

During that month, Jessica was offered a job in Wisconsin.  The offer was unexpected.  On the one hand, the timing was not great because they had just bought a house in California and Rusty had started a new job.  Jessica loved the job she had.  But they had come to realize that California was not going to be their permanent home.  They were beginning to think about making a change at some point, a few years down the road.  Here was an unexpected opportunity with another dream job for Jessica.  Rusty has the ability to work from home and he was more than willing to give up the soul crushing commute he had in California.

Jess accepted her job offer, Rusty found a new position, and they made plans to move to Wisconsin.  They would stay with us while their California house sold and they looked for a new place to live.

We were beyond thrilled.  Our family was due for good news, and this was fantastic news.

Then we got the news that Alex still had cancer.

Cancer really was at the center of everything this time.  I took four months off work.

The three of us moved to Milwaukee for three weeks.  In a year's time, Alex spent 30 nights in the hospital and either John or I or both of us was with him every night.  One or both of us was with him nearly every minute of every hospital stay.  We also had a week of outpatient procedures in Milwaukee that required a hotel stay.

We had plenty of togetherness.

Jess and Rusty stayed with us for two months.  They moved into their new home about two weeks before John, Alex, and I left for Milwaukee for the transplant.

We got back from Milwaukee, and Alex spent three more weeks at home with us.

Now Alex is back at his group home.  I've been back at school for three weeks.  In many ways, it feels like I was never gone.

We're going through the motions of our old routine.

It just feels different.

We know that Alex is at high risk for relapse.  That specter is there, but we try to not dwell on the possibility.

I feel like I'm adjusting to the kids being gone, all over again.  It does feel good.  Jessica and Rusty are settling into married life, a new home, new jobs, and a new puppy.  Alex is back at his part time job and living at his group home.

John and I are back at work, going to flying club meetings, and going flying.  This past weekend, we flew to NYC for my birthday.  It's a trip we planned and cancelled twice during Alex's illness.  We haven't been away in a long time.  We're trying to figure out our time together and to not have that feeling like we should be doing something else.

We're learning what it's like to have our daughter and son-in-law living only 35 minutes away, instead of 2,200 miles away.

Alex still has treatment, but only once every three weeks.  Our visits no longer have to be dominated by medical procedures.  He still has them, but they are not dominating our lives.

Today is a good day. I'm grateful for the good days.  It's been a long time coming.

Thursday, February 4, 2016

Hope Renewed

I’ll start with the punchline:  we got good news yesterday.

My last post was called “Tick, Tock, Tick” and I wrote about my “scanxiety” and anticipation of Alex’s post stem-cell transplant PET scan.

I figured if you read that post, you might be interested in the outcome.


We looked at the scan in our oncologist’s office, and we compared it to the previous scan, taken before transplant.

The new scan was a thing of beauty.  All of the dark shadows were gone.

A “negative PET.”  I believe the adjective “excellent” was used.  I may have cried.


I dared not hope.  It has been a year of disappointments.  I was prepared for more bad news.

I was trying to read the body language of our doctor and PA when they came in the room.  They asked how Alex’s recovery was going.  The doctor asked to see the stress ball Alex was fidgeting with (really?  I think the doctor was trying to build the suspense).  The doctor seemed to be smiling. The PA seemed to be smiling.  Maybe it’s good news?  Just get it over with.

“There is no sign of active disease.”

I find it more difficult to say the word, “remission,” than I thought I would.  My feelings are more complicated than I expected them to be.  Don’t get me wrong, I’m thrilled.  But I guess I’m also guarded.  There have been so many disappointments, and it’s been such a difficult year.

It’s almost like this feeling that if I say the word out loud, it will disappear.  This promise will vaporize before my very eyes.

I went looking for a quote about fear to help me explain my feelings.  I found some dialogue from a Will Smith film called “After Earth.”  I haven’t seen the movie, but I think this quote comes pretty close to describing my feelings:

“Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. Danger is very real, but fear is a choice.”

To me, this means that I can’t choose fear.  Danger of relapse is real, and there is nothing I can do about that, but to live in fear of that possibility, that is a choice.

Instead, I choose to allow myself to bask in the glow of remission.  To savor the victory.

Alex returned to his group home today.  There were posters all over his bedroom wall, made by his roommates and caregivers.  They celebrated by going out to Alex’s favorite restaurant, and his caregiver texted me a photo of Alex with his “Welcome Home” cake.  Monday, I go back to teaching fourth grade.  I haven’t been at work since mid-October.   I appreciated the opportunity to focus on being Alex’s caregiver.  Now I’m looking forward to taking back some other aspects of my life.  I realize that our lives are not exactly what they were before, cancer changes things, but I’m ready to figure out the new normal.

Alex is at high risk for relapse.  There are four factors that are predictors of relapse in his particular cancer.  He scores “yes” on all four, and yes is bad.  He has a perfect score when you don’t want a perfect score.  He’ll have a maintenance chemo, a fairly new drug specifically for post-transplant, relapsed and refractory Hodgkin’s patients.  The purpose is to keep him in remission and not let that relapse happen.

This treatment should be less brutal than the ones that came before.  We should be able to somewhat integrate it into our lives, rather than the treatment totally dictating every aspect of our lives.  The treatment will continue for up to a year.  Alex will have another scan in six months.  Every clean scan brings us closer to getting to call his cancer “cured.”

We must choose to live in hope, to allow ourselves to enjoy the sweetness of this good news, and to choose not to live in fear.

Good news at last.