About a month ago my niece, Brittany posted her thoughts and feeling regarding the end of her son’s (Ward) chemotherapy, the removal of the port and what it feel like to be a family that has survived the initial phase of cancer treatment, in a way too young boy (diagnosed at 1 1/2 years of age). I wanted to share it with you because it is poignant and real. I get this as a cancer survivor. I get this as someone who saw their husband die from the disease. I get it and yet I don’t. Each of our experiences with this diagnosis are just a wee bit different. Here is what I know-the diagnosis of cancer sucks. Plain and simple. Yet, for those of us who survive we each must find a way to move on, figure out a new norm and try to remember to live and breath every day.

Brittany’s Caring Bridge Note.

“And just like he rang the bell, chemotherapy ended, a scan was officially clear and all cheered.

Except me.

Why?

I want to breathe out, I have been holding my breath since December 8, 2017 at 10:30 a.m.

I thought this was THE end.  But it’s not.  It is simply AN end.  This is the beginning for a new phase of cancer, living scan to scan.

His name is off the prayer list, the cards won’t come anymore, we won’t see our doctors weekly, and the average friend thinks we are done, praise God.  The only thing that will keep coming is advice, a blessing and a curse.

There is no back to normal, we live now as a family traumatized by cancer.

The life we used to live meant we’d be planning a vacation and buying plane tickets, but now I count how many scans are between us and that trip, and how many times do we have to all hold our breath and hope to hear the words, “the scan is clear” again.

The life we used to live included parties, lots of summer parties.  But now parties make me anxious. Who is coming?  Are they sick? Do they know he had cancer?  Will they ask the hard questions?  Will I be triggered into anxiety by something new I don’t even know will trigger me?

The life we used to live included trust.  Now I ask do I trust his doctors?  Do I trust my decision-making?  Do I trust we can keep living?  Do I trust that the floor won’t crumble beneath us?

December to May we lived in triage.

We woke up, put on our pants, took a deep breath and did the emergency work the doctors guided us to do.  We showed up on time, we held him, we medicated him, we cleaned up the messes, we hugged each other, we cried when necessary, and we loved harder than we ever loved before.

But the triage phase is over.  We have paused.  We look back.  We look forward. We look inside.

When will we breathe out?

It may never be all at once.  But we will slowly exhale over the years with each new day, each giggle, each birthday, and each milestone.  We will slowly exhale each clear scan and each year further from cancer.

Hope and love will remind us to breathe in the meantime.”