Nightmares of Death

Nightmares of me dying. Why do I dream I am the one dying? I have been dreaming that for months. It's not Charles, it's me. Maybe I wish it were me instead of him. Maybe I wish I could make some sort of deal with God or even the devil to exchange my life for his. If it were only possible. If it were possible would I really do it or am I just playing some sort of sick psycho game in my own head? I have but one life to lay down for my brother. Didn't someone famous say that? I know what they meant now.

Or was that, I have but one life to LIVE for my brother?

I know I've done all I can for Charles, but I keep hoping there is something I've overlooked that can make everything right and that I discover it before it is too damn late. I know I am grasping for miracles and bearing unnecessary and realistic "blame" and even guilt. Knowing that doesn't ease the pain or confusion, though. Knowing that only causes me to fear further that I am slipping over the edge.

Keep smiling, Tony, and telling the world you're okay. Maybe you can fake it till you make it and believe it yourself. Maybe you can force those death nightmares from your restless sleep.

Peace and Pain. I have both and one doesn't negate the other. Peace that I've said goodbye and have done all I humanly can. Pain at the loss of a dear brother I never truly got to know and enjoy the way I should have.

Last Week I Was With My Brother Charles

Okay, I've tried writing a summation of last week's events several times but have refused to post since none of it makes sense. I am still trying to work through it all in my own head let alone get to the point that I can tell others in a logical narrative what the hell happened. I am feeling lots of anger and confusion still. As I wrote I found that I was revealing a lot of "family secrets" about the asinine and terrible dysfunction my family suffers. Secrets, that if revealed, would doom me and my sister Teresa to be even further outcast from their ranks, if that is even possible. Jacklegs (interlopers) are what we are considered.

None of this is making any sense either. Maybe I should just give up and not try to relate what happened. No, I am writing it all elsewhere. A sort of stream of consciousness recounting of the week filled with pain and joy and fear and peace all at the same time. Maybe it will appear here in this blog and maybe not. I don't know. There are too many family secrets revealed. Too many personalities exposed for their true selves. Personalities that have remained hidden till the glaring reality of the hospital death bed revealed them for who they really are. Who they have been all along. Who I've known them to be most of my life.

This reads like nonsense. Like the sweaty hallucinations of a madman. I am not mad. I am angry. I am angry at people and their ignorance. I am angry at doctors and their inadequacies. I am angry at Charles for smoking. I am angry at myself for living so far from him. I am angry at myself for being weak and helpless to save him or comfort him. I am angry at myself for having to come back to Atlanta. I am angry at myself for not being able to write my thoughts clearly. I am angry at myself for being a coward and not telling the straight facts about what happened. I am angry for the fear I have of sharing the truth. I am angry at Death. Fuck you, Death, you filthy rotten bastard!

No, that didn't make me feel any better. In fact, it makes me a little bit scared.

All of this and yet... and yet, I have peace.

"A peace that passeth all understanding."

I got to spend quality time with Charles. The kind of time that only two brothers can share. Honest (finally) quality time with honest (finally) talk and honest (finally!) love. We held each other. I kissed him again and again and he never made a single crack about questioning my sexuality. We never could have done that before. Before this. Before Death stood in the doorway waiting for Charles to give up. For Charles to go "home". We wept together often and yes, we even laughed together. Especially when the thunder storm rolled in outside the hospice window and he reminded me of when we were kids all sleeping in the same room and we would claim the next thunder boom as our "fart" and giggle... quiet, stifled giggles so we wouldn't arouse our father's anger... late into the night stifled giggles under the covers between thunder boom farts. He laughed in Death's face with a childhood remembrance.

At this moment (and isn't that all we really have?) Charles is still breathing on his own with a trach (tracheotomy). He has new cancers attached to his brainstem, he has new soft tissue masses blocking his airway, the "old" cancers have not responded to the additional radiation and chemo treatments. There will be no further treatments and his remaining time is short. There are signs of his organs and bodily functions shutting down. Maybe only days or possibly weeks left.

But, he does have some time he wouldn't have had if the plans of last Monday had come to fruition. Had "the family" had it's way and "pulled the plug" at 1 p.m. Central Standard Time. Had not the doctors wanted to hear from Charles himself and administered a "narco" shot to counter the sedatives so they could present him with a possible alternative to suffocation I may be writing a totally different post now.

So Charles continues his fight for life. He refuses to cave in and let the cancer beat him. He moves along his spiritual path and has become an even greater blessing than before his illness. Charles is a good man and people have come forth to thank him for saving their lives in various ways. Charles wrote, "That's what made life worth living for me. I never felt more alive than when I was helping someone else better their life."

If the doctors hadn't awaken Charles I would not have gotten my chance to share what has been probably the most traumatic and wonderful week of my life with my brother. A week I will never forget and will always be grateful for. The week that ended with us both finally saying a real "good bye". I will still fax and call Charles every day but we've said our good byes and I have a peace that all is as it should be.

Charles isn't giving up even though his body is. Today he went fishing at the pond on the VA grounds with his son, Jason and his little brother Carroll. He was telling me how much he wanted to go fishing and catch one of those big ones that all the other Vets were talking about. Stocked pond, catch and release enforced, lots of big fish waiting for Charles. Can't wait to "hear" his fish story tomorrow. He can't talk... just taps on the phone once for yes and twice for no or has someone talk for him while he writes. I can just see him now being wheeled down to that pond and anxiously waiting for his fish to bite.

From ICU to hospice in a week. From pulling the plug on life support to a trach tube and breathing on his own in a week. From emotional hell to blessed heaven, "There are no tears in heaven," he reminded me. I cling to the hope that he is right. He told me that he would figure out a way to let me know that he got there alright and he would be waiting for me when I arrived myself. He told my sister to be looking for him in her dreams because he would do his best to be there. Oops, there I go talking silly craziness again. 'Scuse me, folks.

So, I couldn't write all the gory but factual details at this point in time, the way I really wanted, because of my fear of riling the demons of family dysfunction and causing further emotional destruction. So be it. What has come out here is what will remain here for now. The rest will surface over time as I exorcise my own demons in writing as I deal with the thick ugly scars of my past as revealed in the present behaviors of some "family members" during this trying time. Somehow I am looking forward to that.

Yeah, none of this rambling makes any real sense, does it?

Things Change

I am sitting in the ICU waiting room writing this on my Treo 650 mobile phone. Charles is still with us and is breathing on his own. He came out of surgery this morning from having his trach installed. All treatments have ceased as nothing has been effective on the tumors. In fact, the respiratory distsress was caused by a new soft tissue mass restricting his airway.

Doctors are giving him less than two weeks. Of course, no one knows what to expect. We are attempting to arrange hospice care to get him out of this hospital and let him die with dignity. What am I going to do? I don't know. All I know is these are the last moments I will ever be able to spend with Charles on this earth. Nothing else matters.

I walked beside his bed holding his hand on the way to surgery. He kept looking up at me with his one good eye and squeezing my hand. "This is as far you can go, Sir," said the med tech pushing the bed. Charles and I looked at each other, "I'll be waiting for you when you wake up, Little Bro'." He nodded his head yes.

They wheeled him through the big double doors of the surgery ward. He looks so frail yet he is very brave and courageous. Greedily clinging to every last moment of life he can squeeze out of this existence. All day yesterday he was focused on CNN and the Terri Schiavo case. I think he empathizes with her plight that is so similar to his own at this moment.

Just before the surgery doors closed between us he gave the thumbs up sign...

Charles' Final Hours

Charles will be removed from life support tomorrow (Monday, March 21, 2005) at 1 p.m. CST. Doctors expect he will transpire any where from a few minutes to 24 hours after the respirator is removed. I am leaving soon to make the 10 hour drive to be there in time. My heart and mind are filled with all sort of emotions that I don't have the time to discuss here now and probably couldn't do justice in conveying them anyway. I have only slept an hour in the last 48 but will try to grab a couple hours sleep before departing.

I want to thank all of you who have offered your support and kind words of encouragement before I am absent from this blog for at least the next few days. You don't know how much some of the simplest comments have meant to Charles and I. Remember, your words and thoughts have power beyond what most people imagine.

I will return as soon as I am emotionally capable.

Wake Up Call About Charles

I couldn't go to sleep last night. I was so tired but couldn't make myself go to bed and stayed up surfing blogs till about 2 a.m. I made several half-hearted attempts to write a post that has been in my mind for a week about Charles, but each time I ended up deleting versus posting because the content just didn't seem like what I really wanted to say. I wanted to call Charles. In fact, I felt an uncanny urge to call him but mentally talked myself out of it several times. I justified not calling him by the facts I had already talked with him earlier in the day and that he was hopefully resting and didn't need me to wake him up. I wanted to talk with him but didn't know what I would say even I did call him at such an odd hour of the night.

At 3:25 a.m. our house phone rang. I had been in and out of sleep but never reached that sublime state of rest where I am oblivious to the real world. Deep and restful sleep. I was instantly wide awake before the first ring was completed and fumbled around my nightstand in the dark with my heart pounding while thinking, "This is it." I answered and the voice of a strange woman who was obviously at a party said, "Doug?" Realizing that it wasn't "the call" I kindly told her she had the wrong number. After her apology I hung up the receiver and snuggled under the covers spooning against the backside of my wife feeling like I needed additional comforting but not knowing why.

Again, I went through the insomniac's ritual of trying to force myself to go to sleep and began the roller-coaster in and out of acute consciousness and semi-dream state without ever achieving the unconsciousness I so desired. Then I heard my mobile phone ringing downstairs and rolled over to look at the clock and see that it was 4:30 a.m. and thought, "This is it," but then quickly adjusted my thoughts to, "No, it's gotta be the Message Center calling because they cannot find my on call engineer for a customer problem." That made more sense... didn't it? By this time the call was missed and I knew I needed to get up and head downstairs to see who had called and probably end up calling the Message Center back to get the facts of what was going on and who I needed to chase down at this ungodly hour. Customers... sheesh.

Before I could get my robe on the house phone started ringing. My heart stopped... "This was it," I sensed. No one would call my house phone after missing me on my mobile unless they were family and it was an emergency. No one else had both numbers. "This is it," I kept repeating in my mind, "This is it." I grabbed for the cordless handset on my nightstand for the second time tonight only to find its battery was dead. Damn it! "Screw the robe," I thought, as I headed naked down the hall and then down the stairs in hope of getting to the phone before the answering machine kicked in. No such luck was with me tonight.

The answering machine picked up the call. "Hello Georgia," came my Dad's voice over the speaker. "This is Arkansas calling and it is around 3:30 a.m. our time." His voice sounded wide awake and almost cheery. What the crap was going on? "Don't know when you Georgians get up on a Sunday morning but when you do, give me a call." And just as I picked up the cordless downstairs phone and pressed "talk" he hung up.

Damn it! Why was this happening like this? I immediately got my mobile and clicked on "Return Call" to my Dad's mobile phone. He answered in the middle of the very first ring.

"Hello, Tony OH," he answered cheerfully just as if it were the middle of the day and we were having a scheduled conversation versus what I knew was going to be a disturbing call.

"What's up?" I asked. The strained relationship he and I have had for most of my life was making this more difficult. More about that maybe some other time some other post.

I won't go into the details of the needless banter that was exchanged between us until he got around to saying what was the reason for the call. Charles had been moved back to McClellan VA hospital and was in ICU on a respirator. His lungs were filling with fluids and they were trying to pump them clear. He appeared to be conscious but not truly responsive due to the extensive drugs they put him on.

I found myself surprisingly calm with no emotion in my responses. That strangling feeling of helplessness wasn't scrambling up my throat and I was, at least for the moment, in control of my emotions without much effort. I listened to the assessment of Charles' condition and the only thing running through my head was if I should load up the car and hit the road to be by his side. I caught myself only half listening as I realized that leaving immediately wasn't necessarily the right idea.

"So, that's about it for now," I heard my Dad say. "I'll give you a call when we find out anything else."

"Okay," was all I could eek out.

"Okay, have a good day," he said and disconnected.

"Have a good day?!?" flashed in my brain. "Have a good day?"

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It is now several hours later and the update that just came in is no better than the original call. Is this it? Who knows? I find myself praying that some miracle happens and Charles makes an amazing recovery and baffles Science, yet another voice is praying, "Father, please let him pass over in peace." I feel gnawing pangs of guilt when that voice rises within me.

Us Kids Back Then

(Left to Right - My littlest brother Carroll, My Baby Sister Teresa, cousin Tiffany and Aunt Paula. Back row left to right - Charles and Me)
Squinting into the sun not knowing what the future held. (around 1968)

How Do You Say "Happy Birthday" to Someone Who's Dying?

Tomorrow is Charles' birthday. He will be "celebrating" it in between radiation therapy, stomach tube cleaning, eye bandage changes, pain medication administering, and whatnot. And that's if it is a "good" day. If it's not a good day, then he will be laying in agony and exhaustion in between bouts of vomiting and constant waves of nausea. You definitely don't want to know what it would be like if it is a worse day.

So, with all of this in mind, how do I call him tomorrow and tell him "Happy Birthday"? I have dreaded this for over a week already and am not any closer in my mind to pinning this monster fear to the mat. There has to be a way for me to convey to him that I am glad he's alive for another day of life even if he is in torment and losing the battle with cancer. How glad I am that he's still fighting. Surely I can find some way to put a spin on the whole conversation so it isn't obvious that both of us know this will be the last birthday.

No, there's no easy out for me. No softer way. No possibility of avoidance of the uncomfortable "chore" before me. I have to call him, just like I do every day, and tell him once again, "I love ya', Little Bro'." And then I need to tell him how much ... how very, very much I wish ... No, I WANT ... how very much I want him to have a Happy Birthday.

God grant me the serenity.

Grief Counseling

Tonight I attended my first grief counseling session at the insistence of my wife. I don't think I will be going back to this particular group. Everyone there was dealing with loved ones who had already died, some recently and some from several years in their past. I am dealing with a different type of grief. A grief that is tough to define as I am grieving someone who is suffering and dying not already dead and gone. I am not at a place where I have the luxury of trying to put it behind me because the actual death part has yet to happen. I am grieving because I know the inevitable is coming and there isn't a damn thing I can do about it. I am grieving because I am helpless to ease his suffering and unable to give him hope. I am grieving because I cannot be by his side attempting to comfort him or to just be there when he awakes alone in the middle of the night.

I am suffering from all the classical signs of grieving and severe depression. Unable to focus, unable to sleep (and when I do I dream I am the one dying), feelings of my own mortality, numbness to the realities of daily living, misperception of time and more. I may need "assistance" in coping with what I am going through but I doubt it will be through this group tonight.

Time is Running Out

Okay, I've been avoiding writing about what's really on my mind the last few days. Of course, what's on my mind is Charles, my brother who is dying from cancer. I tried calling to talk with him tonight and we couldn't have a conversation over his vomiting. The last thing he said to me between heaves was, "I love you, Tony" and then the retching sound before the click of the receiver in my ear. I just sat here with the phone up to my ear not wanting the conversation to be over and wishing that he wasn't living through the hell he is on the other end of that disconnected line.

Charles has now been declared terminal with zero percent survivability chances. At least, that's the third hand information I am getting from those on the front lines with him, namely my Mom and Dad. They are not the best at relaying medical information in an objective or concise manner. But that's another story that may never be told in these posts.

Charles is declining further and has lost more weight. His body is rejecting the tube feeding of the Ensure drink they've been feeding him from a drip bag so now they have moved him to Similac in hopes he can keep it down... yeah, same thing I thought... that's baby formula. Well, from the way our conversation went tonight I would say that the Similac isn't working too well, either.

They are continuing to give him radiation hoping to reduce the size of the tumor mass to relieve pressure from his brain and to keep it from shutting down his heart and lungs. It is a lost cause and the doctor says is mainly a gesture to Charles to encourage him not to give up. Prolong his agony? He is scheduled for another round of chemo in two weeks. There is question if he will make it that far. My question is why keep poisoning him further if it isn't going to help him and only makes him sicker?

I'm not making much sense right now. Need to rest.

Good night, Charles. May the angels comfort you in your sleep tonight.