A Week of Yes and No’s

I can’t arrange the thoughts in my mind.

They’re all too loud. (Thanks, Jodie)

The past week has been a blur of too much and not enough.

We’ve had the 3K walk for the Brain Tumor Center at Duke last week. Followed by a week full of paperwork, rejections and a doctor’s appointment.

Then, we ended the week with a 5K that some of our dear friends ran in Chris’ honor.

Needless to say, the week was full of up’s and down’s.

The 3K walk at Duke was wonderful. A magical group of people that actually know the pain that I feel on a day to day basis. A gathering of souls that are beaten down by the word, “Brain Tumor”, but still manage to rise above the hurt and anger and fulfill their own or their loved one’s legacy. The main highlight being the group of survivors standing on a stage and beaming with pride out upon a crowd of people who wrapped their souls around their hearts and lifted them up. Probably higher than they ever imagined.

There was a lowlight, though.

A sobering reminder of my future.

A raw and unexpected feeling suddenly washed over me at one point.

The “In Memorium” shirts.

The team shirts with pictures on them. Printed with dates of birth and dates of death.

Smiling photos of people who fought the same fight my husband is fighting.

Smiling photos that reminded me of reality.

I was so happy to go to this event. So happy to take part in a walk with my family, with Chris by my side, holding my hand. So damn happy that, for a moment, I actually forgot the truth.

Chris’ brain cancer isn’t curable.

One day I will be wearing one of those shirts. One day my smile will be forced and my hand will be empty.

One day will come.

And that was the undeniable reality that I overlooked in my happiness. And I believe Chris felt that reality, too. His eyes were wide. His sentences shorter than normal. Obviously, clipped by fear. All I could do was rub his back as we walked and whisper, “I’m right here, love.” Only then would he smile. Only then did I see a glimpse of my fighter.

We left quickly. He was complaining of headache. And while I don’t believe he was lying, I do believe the headache was brought on by something more than four brain surgeries. I believe it was brought on by heartache. He’s only human and had a natural human reaction to what most would call a reality check.

So, we came home. Somber and restless. Needing to be busy and needing to rest.

My week was full of paperwork and tireless hours of research and phone calls. You see, I want to dot every I and cross every T. I can’t miss a thing. Be it a prior authorization for a new medication to phone calls to various and sundry doctors, doctor’s offices, government agencies, pharmacies, aphasia groups, home care nurses, speech pathologists, social workers and the occasional friend. Without constant diligence, my world will crumble beneath the weight of uncertainty. It’s all about keeping organized in a disorganized world.

And I do that. Stay as “on top” of everything as possible because the one phone call missed or the one email that doesn’t get sent could be the downfall of this teetering thing I call life.

I took Chris to the doctor on Friday and boy was he happy to get his stitches out! He wanted to cut his hair so bad he could barely stand it!

But, they didn’t take them out.

They weren’t ready to come out.

Another blow to his self esteem. Another no, when all he wants to hear is yes.

Damnit! Somebody tell this man yes! Give him control of at least one thing.

But, no.

No is all we have heard so far. And little by little, they are taking control of a man that once prided himself in his appearance and intellect. They’ve taken thirty five percent of his skull. He won’t say it, but I know he shudders when he looks at himself. I know he curses at the mirror. He gets frustrated when words don’t come. He knows they may never come. And he knows he’s lost control. Watching someone that fills your heart with overcapacitating love lose control is a hell I wish on no one. A hell I live every minute of every single day.

But, then there was Saturday.

How to explain the way Saturday made me feel? This is one of those times when words can’t possibly be enough. There’s no way I can explain how love and pride feel.

On Saturday, a group of our friends ran a 5K race in honor of Chris and his fight. There were tee shirts made and worn with his favorite catchphrase “Padgett Magic” on them. Team Padgett Magic was full of love and hope. I was filled with a sense of gratefulness that is undefinable. Watching each and every one of them cross the finish line, knowing that it was their love of Chris that propelled them to it, was beautiful.

You know what was more beautiful?

Chris’ face when he saw each person. I live for that face. His smile was big. His eyes sparkled and I’m sure I saw his chin quiver when he hugged one of them. He was happy, y’all. And it was the love of others that made him happy. I am thankful. I am grateful. And, for once, I was speechless. How do you say thank you to someone who spent their precious time getting special tee shirts made? How do you say thank you to the people that bought them and wore them with pride? You can’t. But, I hugged each and every one of them after they finished and exclaimed, “Thank you, thank you, thank you!”

They will never know how they touched my heart. They will never know the depth of my gratitude. I can only hope they know that my hug was genuine. And despite everything, they made me forget, if for only a moment, the reality of my life.

So, now we look forward to another week. Another week of diligent work and mindful living. Another week of our fight.

And that’s all I can ask for.

Another week.