Tuesday, December 12, 2017

5 months

It has been 5 months since my cancer was declared in remission. 

So armed and ready I headed to the cancer center for my appointment. 

I chose to go on my own... returning to the hospital is physically and emotionally exhausting. There is a lot of waiting and I needed the time on my own to gather my thoughts and questions before seeing my doctor. 

I am struggling and I realize that part of the struggle is self imposed. 
I viewed remission as a destination. 
Throughout the challenges of chemo I kept my eyes on the prize. 
I could face  the infusions knowing that I was one step closer to finish. 
With each new side effect and symptom I knew that relief was not too far out of reach. 

But the infusions finished, and my scans are clear and the symptoms linger (with the introduction or awareness of new symptoms). 

I feel like I have fallen into a new trench, just as I had climbed out of the previous one. 
But unlike before, my journey is less visible. 
Others do not see what I know and feel 
I realize that is part my fault for not being open and part the the reality of the unknownness of this leg of the journey.

I  am left with the imprints this disease has left on my life- both body and mind. 
There are times I am crushed by anxiety and fear, desperate to find control in a situation that is uncontrollable. 
I am highly alert to where I was only a year ago and how possible it could be to be right back at the start line. (Sometimes wishing to go back as it is familiar and controlled) 
I live in a fog that keeps me from staying on task, struggling to engage fully in what I am doing and trying to remember even the most basic of things proves to be challenging 
I find myself guarded to open up and reach out, instead choosing  "turtling" inward part out of fear and part out of survival. 

I am wandering around in the realm of "I don't know what I don't know" and that is an unsettling place to be. 
And when I do "know" I am easily overwhelmed, discouraged, frustrated and lately just a little bit pissed.  

While my hair is growing back and my cheeks are gaining color I am not "me" yet. I look in the mirror and I can only see the "damage" and the long road ahead. I see the physical reminders of the last year and what will forever be changed and I am saddened and discouraged that I am right where I am. 
Because I feel like I should be past this point that I should further along this road- 
I shouldn't feel the same way as I did during infusions because infusions are done, 
I shouldn't need a wheel chair now because I didn't use one then, 
I should be getting stronger instead of feeling weak.
 I should, I should, I should...
But I can't. I just can't. 

To see it in print, to put it out there is both freeing and frightening. 

And I realize that I have a choice.

For the last year, my focus has been on healing. 
Fighting the disease and conquering with Joy the path before me. 

And now my focus needs to shift to RECOVER.... 

Because to recover means: return to a normal state of health, mind, and  strength.

Unlike the path to healing, the road to recovery is an undetermined amount of time and very individualized. 
There is nothing I can do but to live each day and to accept that this is where I am regardless of where I want or wish to be and its really hard. 

So I keep choosing Joy 
I am deciding to Live Brave 
I give myself permission to feel the fear but to do it anyway 
and I will focus on the blessings and the many things to be thankful for.

Thanks for sharing the journey and for being among the list of blessings 

Thursday, December 7, 2017

Christmas Concert

I love the Sparkles elementary school.

They do things, and they do them well.

One of the things I enjoy most is the split of concerts and programs. In the winter the 1st and 2nd grade students WOW us with a Christmas show that is sure to get anyone into the Christmas spirit and then in the spring the 3rd and 4th graders bless us with a program filled with laughter and memories.
The programs are short and sweet and after,the hallways are filled with student art work to admire.
As a former teacher, I am grateful for the teachers that work so hard to put this on, as well as, the recognition that less is best.

So Thursday evening we attended the winter program "A December to Remember".
We chuckled at jokes,  heard songs about "Procrastinating" and "Wiping Out" and smiled at the contagious joy of these children.
After weeks of hearing Cooper humming bits and parts, it was cute to hear how it all came together.

Here is Cooper- front and center (first row standing behind the girl sitting in the teal sweatshirt)
He wasn't a huge fan of standing the entire time but it didn't stop him from singing and dancing with his classmates.

 This was the piece Cooper decided to hang in the art show... I can't wait to see his other creations in his portfolio.

A wonderful evening and another memory to cherish.

Wednesday, December 6, 2017

Expert Parking

Driving with Madi is an adventure.

She is cautious and at times overly mindful.
She is eager yet timid
She is always willing to take the keys

So Wednesday evening, when I had forgotten a few errands she was quick to offer to drive us to the stores and finish the lists.

I will be honest and admit that riding passenger in the dark, rush hour traffic with my still learning 15 year old daughter was not high on my evening agenda yet I was reminded that she won't learn if we don't try.

The Littles are quite excited when Madi drives and are often quick to "help" her with their backseat driving suggestions.

With everyone buckled we headed down the road to the first stop- Walmart.

Overall, Madison is a great driver. She is mindful of the other cars and gives her self plenty of space and time to react.
If there is one area that she is most unsure its parking.
She is very concerned about hitting another car.

As we pulled into the parking lot, I told her to find where she was most comfortable and to park there.   It was an opportunity for her to build her confidence and skills.

Here is where she decided....
Her Joy was bubbling over, she was so proud of herself and her park job- perfectly situated between the lines, no risk of hitting anything. (there was not a car within 40 spaces of us)
We laughed the entire cold walk to the entrance... all 167 steps.

Sunday, December 3, 2017

Friday, December 1, 2017

Christmas Palooza

It is the Sparkman tradition to transform our house during Christmas into what is fondly called
Christmas Palooza

We decorate each room in the downstairs of our house with themed Christmas trees and beloved decorations.

It is something that most years I highly anticipate with joy and excitement.

But this year was hard, I even asked if we could skip it all together.
I tried to simplify and only do what was most important to the Sparkles.
I asked each of them what they loved most... and the answer was EVERYTHING.

They love the trees in all the rooms, and were quite upset to even consider a tree being "left out."
They love the themes and display of the many ornaments we have collected throughout the years.
They love the twinkle of the lights in the otherwise dark rooms.
They love singing snowman that climb the stairs
They love it all.

So down came the boxes
and up went the trees (there are 12 this year all ranging in size from 1-7.5 feet).
On went the Christmas music
and Palooza began.

My joyful Sparkles

 So as I sit with coffee and admire the trees, I am thankful that I could give my Sparkles their wish.
It was a lot of work and my heart wasn't really into it. But I had choice and I chose JOY.

The Joy on the Sparkles faces as they decorated.
The Joy of the memories made
And the reminder that we have this time together and we are blessed.

Another year of Palooza and a house filled wth JOY

Monday, November 27, 2017

My yi yi Birthday

As a surprise birthday gift, Rob and I went to the Billy Joel concert.
Rob was able to fly home and whisk me away to Downtown. (I had no clue)

I love Billy Joel and to see him live was a wonderful experience.

A perfect night with my love- great music and many memories.

Wednesday, November 22, 2017

D Day

Today marks 1 year since my diagnosis
It was originally a day I thought I wanted to mark with celebration- time with friends and joy filled memories

But I am just not ready yet to celebrate. 

I spent this day a year ago tucked into my turtle shell quietly processing the journey ahead
I slunk away from loved ones and curled inward to prepare to face outward the impending journey. 

A year later, no matter my brave intentions, I am slinking back into my shell to quietly reflect on where I was a year ago and the journey that is still ahead. 

Remission is its own journey with knowns and unknowns and unlike treatment, there is no "normal" or set series of milestones. Much of the information is based on how I feel and often is difficult for me to articulate. 

I am easily overwhelmed and often feel short circuited. 
Sounds are amplified, multiple noises (crowds) are hard to filter. 
I grasp to hang onto concentration and often feel as if I heard nothing. 
There are times that I am overstimulated by anything more then silence  and even times when silence is too much to process. 

To others this may look like I am short tempered, frazzled, stressed and easily overwhelmed- which may be true but there is so much more to it. 

And I am discouraged  that there is still so much out of my control and so much unpredictability. 

There are days when the only visible growth is my hair (in all it’s beautiful curliness) and progress is sometimes unrecognizable 

Days when I feel stuck on a long narrow road... the past not that far behind and the future still too distant and uncertain to be hopeful. 

I am not ready to celebrate... 
but I am ready to embrace this milestone-
a day that changed the course of my life
a day I chose Joy 

May you you also choose joy in your journeys