Monday, May 26, 2008

Breath In... Breath Out...

A dear friend of mine commissioned a little warrior woman goddess for me by an artist friend of hers. It’s a beautiful piece incorporating wirework, beads and other little wonderful trinkets. And it has the words “warrior” woven into it. It’s a cherished gift that gently helps to remind me daily that I am a warrior and that I have the strength to get through this. The card that accompanied the gift read, “Breath In…Breath out…repeat. “ I’ve hung the card as well. Something so simple…and yet so important. When it hits the fan, as it seems to all too often to around here, I try to remember this simple mantra.

On the front line, things seemed to have settled down a bit around here. We’re by no means in peace time…just a respite from the war going on within David’s body. We’re getting into new routines and learning how to navigate the latest turn this journey has taken us. David is recovering at home. There are fewer bouts of confusion and he’s having more moments of connectedness with the family. He’s begun his new chemo treatments and those seem to be going smoothly as well. It’s a bit different this time, since he’s receiving these intravenously, and previously his chemo was always by pill. It’s that whole wacky blood brain barrier thing. It’s extremely difficult to cross and thus, brain cancer patients tend to have pill forms of chemo. But he’s received 2 treatments and his body is tolerating it well. It’s an eye opening experience to be amongst all of the other patients. Cancer truly doesn’t discriminate. All races. Young and old. Men, Women and Children. And as I watched…It made me think. I’ve always thought brain cancer was especially insidious because of how it not only attacks the body but the mind. Effecting memory, insight and behavior. But in truth, all forms of Cancer are insidious. I just happen to have the inside track on the brain tumor kind. But each and every person going through this battle and fighting with the malignant little beast has their own equally nasty shit to deal with. And I commend every single one of you. All of the warriors….both patients and caregivers. Because it can get quite brutal out there.

But we’re doing it. Getting through the days. Just getting through. We spend entirely too much time at the hospital. Enduring treatments, doctor appointments, therapies and an unending battery of tests. I’ve been mistaken on more than one occasion as an employee in numerous departments and have even begun to get the employee discount (unasked for) in the cafeteria. You know I’ve been here too much! And when I’m walking down the halls and in the period of 5 minutes I have had a couple of nurses, a resident, a physical therapist and a doctor wave at me, I’ve realized just how much a part of the institution I’ve become. It’s surreal but this is my life. This truly has become my second home. Although on some levels I absolutely hate this place, for all it symbolizes and reminds me of. Strangely enough, despite all of the pain and fear that I associate with this damn place, I’ve also become extremely comfortable here. I have spent way too much time here over the last 2 years and the hospital and its staff have become a very big part of my life. For better or worse.

I’ve even found myself gravitating to the 5th floor just because I’ve spent so much time there. Both in the Neuro-ICU and the Neuro –Recovery wing. I’ll see nurses that have cared for David in the past and some even stop to chat and find out how we’re doing. The staff there is phenomenal and I am eternally grateful to have them in our lives. Many have gone well beyond the call of duty getting us resources we needed or just lending a shoulder for support. Many have taken care of David on more than one occasion and have gotten quite attached to him themselves.

You can see how that attachment has now begun to affect them. I’ve noticed a change in many of the staff in recent months since David’s last surgery and subsequent stroke. For many, David was the poster child for optimism and he made us believe he could beat it. Even the nurses, who have seen so many before and after him come and go…they began to believe. You could see it in their eyes and how they spoke to us. But now. But now he looks more the “part.” He looks like a GBM patient and it is disconcerting to all of them. Because they have let their walls down and he’s become a part of their lives too. And now they’re beginning to see that David…although absolutely amazing…is not omnipotent. And you can see the profound sadness in their eyes. Some have begun to distance themselves already, as if stealing themselves. Others who were once sassy and playful with David are now quiet and gentle. Many that David used to chat with and tease, he no longer acknowledges or even speaks to. Sometimes it is almost too painful for me to see. Because they have the look that I see only too often on our friends and family faces and is a mirror of what I am feeling myself.

Don’t get me wrong, their treatment is still impeccable. It’s just you can see how this latest turn has effected them...effected all of us. David is fighting a miraculous fight with that Glioblastoma Multiforme and although he was beating it down for an almost record 2 years. Things have shifted a bit. The battle is more equal now. And you can see how not only the Cancer…but the treatments and surgeries are starting to wear at David. Tearing him apart not only on the outside but from within.


At May 28, 2008 5:12 PM, Anonymous Anonymous said...

We haven't met, but I worked with David at Trisept, and went through my own Cancer scare (and continue to do so) last year. My name is Nancy - hopefully David remembers.

David was great to comenserate with and we would give each other "pep talks" every now and then.

I just today found out about your blog and just finished reading through the saga that the Fisher-Hewitt family has been going experiencing. As I'm still fighting my own struggle, I can't offer a whole lot of help other than...KEEP BELIEVING. Just about every time David & I would meet in the hall or otherwise "bump" into each other we would talk about keeping a positive attitude no matter what sort of adversity we were thrown.
I know it doesn't always seem fair, but I'm convinced it's all one GREAT BIG TEST of one's strength and faith, both the individual's and those around him. But it sounds as though you've already figured it out, hence the adoption of the "woman warrior" phrase.

Please tell David I have never stopped adding him (and now you and Alex) to my prayers. I hope we can meet someday and give each other a great big hug!
- Nancy Zompolas

At May 29, 2008 4:31 PM, Anonymous Anonymous said...

I know we haven't met either but I, too, also worked with David almost 8 years ago at Trisept. There are some who still keep in touch and therefore through a mutual friend I have come across your blog.

I have been reading your blog and your courageous and honest messages. I applaud you for your ability to say exactly what is on your mind- good or bad, happy or sad, frustrated or fine - you should because YOU are the only one living with David and going through it 24 hours a day, 7 days a week.

I, like you, am a full time mom who is a caregiver for my 14 month old special needs baby girl. She was diagnosed with a rare genetic disorder that currently only 60 people in the world have. We have limited information on the effects but know she will be mildly to severely mentally retarded, very low muscle tone and already has had a whole host of health problems.

We learned of her special needs when she waas 6 months old however I suspected when she was about 8 weeks old - what we learned was certainly not to the depth that I thought when I suspected. I think the biggest thing for me was having a dream and have that dream change in an instant - not able to adjust, fully understand or accept. As time goes by I still have challenges with all those emotions.

Learning about her diagnosis and accepting our future has been one of the hardest things for me. I so can relate to your warrior woman as I try to work full time to carry our insurance, take care of my 3 1/2 year old boy and the household. However, I realize I have my husband to help with this caregiving as well. Hats off to you for handling all this on your own - you are so brave.

I can relate to your last post where you said you knew the hospital and the staff very well. We just arrived home yesterday from a 3 day stay at Children's which will be our 4th in 10 months along with all her visits to specialists and other things. The nurses on her floor now recognize our name and her and stop by to see her even if they haven't been assigned to her.

The reason for telling you all this? You are not alone and often I think of you when I'm getting down about trying to be all things to all people. Your right - people are there for you in the beginning but what about the middle? Where is everyone that once flocked around you. I've been lucky to have a select few but I'm afraid of wearing them out as well.

I've thought about you, David and Alec often. I know you don't know me but I know the toll caregiving can take. Hang in there and keep being honest with yourself and others reading. Although our situations are different, I'm sorry your going through it and in some way, shape or form I can understand and cheer you on for all that you do...everyday.

Take care of yourself and don't lose faith.


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