Saturday, April 26, 2014

'Clouds' and Seasons

Today was a glorious day.  There was plenty of sunshine and decently warm weather.  It was clearly a day to get in the yard.

I have to admit that gardening, one of my former passions, has taken a hit lately. We have been in our home for nearly nine years (whoa--that doesn't seem right, but I just did the math)  We have spent most of our efforts converting grass to garden, and garden to grass.  We are perpetual work in progress.

We need to have some trees removed, which I have said is one of the least sexy ways of spending money, right behind new tires for the car, a new furnace, or a new roof.  These are expenses that no one will ooh or ahh about.  But if you fail to plunk down the cash, and it subsequently rains in your living room, well, people will notice.

There is a lot that we intend to do, with our limited time, and limited budget.  Happily, this will mean that I will be required to dig in the dirt, getting back to my roots so to speak.  While the gardens have been largely neglected by us for years, they have had the attention of the 100 pound puppy (who, now, nearing on the two year mark, is rapidly approaching the point of being simply considered a dog of questionable training...sigh... We have been a wee bit busy)

So, I was back in my element today, working the soil, weeding and moving some bulbs.  Busy hands and a free mind.

I woke this morning, hearing the song "Clouds" by Zach Sobiech in my mind.   Yesterday was the kick-off for the middle school Kick-It campaign, which lasts the month of May every year. The children raise money for pediatric cancer, devising their own fundraising events, pooling their ideas and gathering the funds as a school unit.  They see the impact of their collective effort at the end of the month, last year raising $32,000.  Pretty awesome if you ask me.

They showed our Flashes of Hope video to the school, which was hard for me, revisiting our struggle.  Children (including Lauren) gave short speeches about how cancer has impacted their lives.  And one girl got on stage to play the piano, "Clouds" by Zach Sobiech, whose story I know all too well.  The entire school joined in singing, and I had to slip out of the auditorium, too overcome with emotion to remain.  They sounded amazing from the bathroom, fyi.

In the garden today, I was working through my varied emotions. Zach, who lost his battle with Osteosarcoma last May, was an amazingly positive, generous and loving person by all accounts.  Despite having never met him, this loss, well, it lands a little too close to home for me to be at all comfortable with it.  But, I choose to be inspired, and to take the lessons that were offered in his story.

While I worked the soil this afternoon, I worked this song out of my head, one of impending separation.  It was replaced with Ecclesiastes...which Lauren had read at her great-grandfather's service not that long ago. But I tend to hear it in my mind as the Byrds sang it...all Forrest Gump like:

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.

I am cognizant that there is a time for every purpose, I just do not always know what season it is and that is not just because of the crazy weather here in northeast Ohio.  It would seem however, that this is the season for planting.  A time to heal.  A time to laugh.  A time to build.  A time to speak.

And always, a time to love.

Wednesday, April 9, 2014

Perception matters

Brent began treatment Monday.  I said 'treatment,' rather than 'chemo.'  I have thought about this quite a bit, and it really shouldn't matter what I call it.

But it does.

Brent, as we were heading down to the hospital corrected me about Interferon.  "It isn't chemo, Mom."

Chemo, in his world, means poison...and neutropenia, and hair loss and weeklong stints in the hospital, nosebleeds and vomiting. With Interferon, we are making daily trips to the outpatient clinic after he finishes his classes at school for infusions of something that is a bit different.  And to Brent, this distinction matters. Kind of a lot.

I wasn't in a great position to argue with him, as I explained, because I hadn't done much in the way of research on this.  Brent found this positively shocking, because I am always reading up on the latest research that comes my way. 

I explained that my research on interferon was limited to listening to the opinion of all of the doctors that we had contacted and consulted.  They were all in agreement about this course of treatment for him. I had learned about other treatments of course, but these were for more advanced disease than he has.  These other therapies are not appropriate for Brent, sort of the equivalent of dropping a bomb on a city that has a couple of criminals in it.  We would learn more about Interferon when we went in.

So, when we arrived, I asked Dr. Stearns to clarify for us. "Is Interferon considered chemotherapy or immunotherapy?"

He smiled with a twinkle in his eye, and responded "Yes."  Because it is a bit of both, killing melanoma cells as well as causing an immune response to be mounted against them.  Well, then.

I always aspire for clarity.  But for Brent, calling this chemo is problematic.  We settled on Chemo-Lite, given that it will be much easier than the very harsh treatment that he received for osteosarcoma.  If calling Interferon 'treatment' rather than chemo makes this more palatable to Brent, well, 'treatment' it is.

While the semantics do not change the truth of what we are doing, it does change his perception of it.  His focus is on the ways that this is far easier than what he has already done, rather than on the ways that this is hard.  I do not want to in any way minimize what he is doing, but I can certainly embrace his philosophical position.  This is doable. This is manageable.

Most importantly, this is what Brent must do to get better, the microscopic cancer mop up. Call it whatever you like.

And I have always said “Whatever gets you through.”