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.

Let them try it for a week...

Well, I guess I brought down the house with the last post “Warrior Woman.” It was pretty raw and from what I’m hearing it stirred a lot of emotions in people. Didn’t intend it to. I was just putting it out there. Trying to release all of the crap that is going on in me internally…so I can continue to move forward and not get so bogged down in this stagnant place of sadness, fear and anger. It’s a fucked up situation and it will continue to be fucked up. I need to pull myself together without dwindling the few remaining emotional and physical reserves I have left, so I can keep plowing on ahead. Plowing on ahead would be an optimistic term at best for me to say at this point. Honestly it’s more like blind and stumbling in the dark. But I know eventually we’re going to see some light in this heartbreaking situation. I just don’t know when or how.

But onto updates…
David has since lost his job. Not due to the incredible people he works with, it’s just that his short term disability ran out and the only option was long term disability or nothing. It was one of the hardest things I’ve ever had to tell David…besides the day I had to tell him that he had a really nasty malignant brain tumor. That was a bad day too. But this day sucked because through all of his kvetching, he loved his job. It gave him focus and kept him moving and thinking. It gave him something to strive for and he felt like he was contributing to the family. This became more and more important as our finances became increasingly messed up due to the Cancer treatments and the frequent periods off work. Although he never intended any of this to happen, I know that working was extremely important to him. Both financially and emotionally. He always was a social person and work was someplace he could go and interact with people all day. And to tell him that he no longer was able to go back there, at this time, in a working capacity was awful. It was yet another blow and for him another thing the Cancer had taken away. God I hate this disease.

I on the other hand have begun working full time, so that Alec and I could have health benefits since those were lost as well. My job has been fabulous and supportive. They’ve taken me on 30-hours a week and given both Alec and me benefits. To say I’m grateful is an understatement. But trying to juggle 30-hours a week in work, being a caregiver to my husband, raising our child and then wadding through the paperwork, appointments and everything else that comes along with his disability is insane. I wake up in a flurry …getting both boys dressed, fed and moving. I continue at mach speed for the remainder of the day only to end when I wind down for 30 minutes before bed with a good book. I know I can’t continue at this pace, and yet what choice do I have? The support continues to come in from friends and family and they’re keeping up on all of our life errands that I never seem to have time to get to. And yet with all of this support…it’s still difficult.

How on earth do people do this without support, I ask yet again? I can’t comprehend it. The doctors release patients’ home, needing 24-hour support and yet look scathingly at you when you say this will be difficult. Not that I would ever not do it…just that it will be difficult. I ask just one of them to live a week in our shoes. Would their friends rally around them like ours have? Would their family come and help out their loved one while they’re at work? Let them try it for a week and then see how much more empathetic they are. Because it is hard…no matter how much love and support you have. It’s hell to watch the man you have loved for 16 years fade before you. To have him unable to care for himself and the frustrations and anger that he experiences and exhibits because of it. To have him have good moments and then be completely and utterly confused the next. To be trying to keep it together so your son can have at least some sense of stability and take moments away from the chaos to play and be a mom, and then do all the other stuff that needs to get done on top of that. I know. I sound bitter. It’s just staggering the lack of support for caregivers at this stage of the game. If the patient is in the “final stages” there is a bevy of support. But for where we’re at now…there isn’t much from the system. There are a lot of programs out there for the patients, which is critical as well. But very little for the caregivers. I’ve asked and been told, “Oh, you’re just the caregiver…that program is for patients only.” Don’t get me wrong. I’m not belittling what David is enduring by any means. He is going through hell as well. It’s just that the system needs to help out the people who take care of their patients, because they are what keeps the household together and they are the one’s that care for the patients. And to them…they aren’t patients. They are husbands, wives, mothers, fathers, children and friends.

Quick Clarification

I just wanted to add a little clarification on my last blog. I guess I may have not explained it as well as I could have, but David is having the disconnect. He's very disconnected from both Alec and I and most of the world around him. It's not an uncommon thing with right-brain surgeries and only time will tell as to the extent he will come back. It's not that he doesn't care, it's just that he doesn't have as much emotional attachments he once had. Certain pathways have been damaged and he just handles emotion differently now.

Warrior Woman

Well, where to begin. I have no clue where to start or what to say. It has been so insane here on so many levels and the insanity seems to have no end in sight. Our world has been shattered and I don’t know if I or anyone for that matter has the power to put it back together again. David survived the surgery and we’ve beaten down the Cancer once again. But at what cost?

David is at home and doing outpatient rehabilitation including: Physical, Speech and Occupational Therapy. Each day his strength seems to be increasing…albeit minutely. But over the weeks it becomes more substantially noticeable. He is able to walk across rooms with the assistance of a cane…and sometimes when he forgets his cane…he’s still able to do it quite aptly. He still needs 24-hour supervision and there are still many things he needs help with. He’s no longer delusional and seeing elements of our home that are not in existence…but he still tends to get confused sometimes. His short term memory is wonky at best and he has trouble focusing and processing simple tasks like using the Itunes or TV remote control. In his moments of clarity…it frustrates him. I can’t imagine the frustration he must feel at times, when he in unable to complete tasks that were once so simple. But more often he’s unaware of his inability to complete the tasks and feels he has no deficits mentally and few physically. Many of these symptoms are common with right-brain surgeries and clinically from what his body has endured are not that extreme.

For me on the other hand, they’re down right disheartening. David has become more distant and lacks a connectedness to either Alec or I. He sees us, and knows who we are but there’s a distance there. It is hard to explain. David was always such a passionate and romantic man. It’s one of the reasons I fell in love with him. He was always so tender and would reach out to touch my hand or kiss me. But now. But now, he tends to talk to me only about the next meal or what he may need. But not much more. He rarely reaches out to touch me or even smile. This too is not uncommon in right-brained surgeries. They tend to get extremely emotional or very distant. Obveoulsy David's brain went the disconnected route. And although I know this isn't "David"...it's the damn surgery, It’s breaking my heart nonetheless. Because I love him so much. He’s my soulmate and my lover. And these treatments are slowly breaking him down. Tearing away at him slowly…a piece at a time. Some nights, I watch him sleeping beside me. And I just cry. I cry for David. I cry for what we’ve lost. I cry for our future. And I cry for Alec.

I’ve been doing a lot of that lately it seems. Crying. I saw a quote the other day, “I may cry easily but I never give up.” It struck a cord with me. Because even amidst all this heartbreak…I know I will never give up. I may not know how I’m going to survive this…let alone get through the next 24 hours. But I will.

My dad the other day called me a warrior woman. He said something to the effect that I amazed him and that I truly was a warrior. I just laughed. David before the last surgery always used to say that as well. I used to tell David how amazing and strong he was, and he would say it was because of me. And that I gave him strength and that I was his warrior woman. Sometimes I thought it was so absurd. Me? The emotional Gemini? Are you kidding me? But over time…he helped me see the real me. The strength that lain within me. And through this whole nightmarish experience it is the one good thing that has come of it. I’ve learned that I’m stronger that I ever thought possible. I’ve learned that you have a choice of whether or not you will let events break you. And I’ve learned that I am one hell of a fighter. So, thank you David. Thank you for all your love, support and wisdom. Although I can’t talk to you right now. I have your words and your inspiration. Because you my love, are my warrior.