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.

Palliative Care - Waiting To Die

• "Palliative care is an interdisciplinary model that focuses on the comprehensive management of the physical, psychological, social and spiritual needs of patients with all types of progressive, incurable illnesses and their families. Palliative care ensures that values and decisions are respected; comfort is a priority; practical needs are addressed; psychosocial and spiritual distress is managed; and opportunities are available for growth and resolution."

Charles was transferred to Fort Roots VA Hospital, North Little Rock (NLR), Arkansas last Thursday. We grew up in NLR and Fort Roots was always known as the "Nut House" where insane people (veterans) were kept. How it came to be known as this is hard to say but the stigma still holds true in Charles' heart. Fort Roots was spoken of in whispers and images of decrepit, slobbering, child-murdering maniacs made us steer far clear of the old buildings that always looked vacated to me. Jokes and threats of "be careful or you will be sent to Fort Roots" were common.

Now the jokes are no longer funny or just scary stories to make children obey or stay away. The reality of Fort Roots in our lives today enlivens those childhood horror stories and engulfs us like the glowing green gelatinous blob devouring everything in its path in those old 50's horror movies. Devouring Charles. Devouring and suffocating our hopes.

• "Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families."--World Health Organization. Technical Report Series 804, Cancer Pain and Palliative Care. Geneva: World Health Organization 1990:11.

Charles was distraught to find out about the plan to transfer him to Fort Roots because all he could think about was that it was the end of the road for him and that he may never come out alive. That he may never go home again. He fretted over it daily and pleaded with family members to not let him die in the hospital. To promise him that. And not to die alone.

I tried to hold to that promise and lived in the hospital 24 hours a day most of my stay there, even sleeping by his side. A few nights I shared with my "little sister", Teresa who was down from Indianapolis but the sharing did little to ease the pain of watching what was transpiring with him. Sleep is impossible whenever you are awaken every few minutes either by alarms on the IV pumps, or nurses giving scheduled meds or pouring more anti-nausea and liquefied morphine into the tube protruding from his emaciated stomach, or by the wet gagging upheavals of the mucositis that threatens to choke him and drown him in his own fluids.

At some point during one of those agonizing time slowly slipping through molasses nights, I realized my own limitations, commitments and life responsibilities would not allow me to be the one who ensured his requests were met. I too was bound to fail Charles when he might be needing me the most.

• Palliative care specialists typically work in teams and usually are needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicted or unclear goals of care, distress related to the process of dying, and increasing family burden.

When Googling Fort Roots I was hard-pressed to come up with much on what is really going on inside. Charles is miserable and describes it as "the pits". He says, "It's a f***ing nursing home!" and gets angry with me when I ask him about the care he's receiving versus the care he was receiving in the primary care facility he was in while I was with him in Little Rock. He gets angry because he feels helpless and trapped. I get angry because I am helpless and trapped.

I feel guilt that I should have stayed just one more day to have been with him as he transferred to Fort Roots so I could see firsthand the difference between the two facilities. So I could have cornered his doctors and made them state explicitly if he was now considered to be under palliative care. If now, we are all just waiting for him to die without hope of a miracle recovery.

• The dying patient requires medical care for a variety of physical symptoms and needs. Medical treatment is now focused on making the patient as comfortable as possible. This treatment includes managing pain, fatigue, shortness of breath, and nausea and vomiting. The medical team should monitor the patient's treatment plan closely and review it to make sure that it is in the patient's best interests and in line with the goals of the treatment plan. This process may involve revising the drug regimen and discontinuing any unnecessary medications, deciding whether to continue nutrition, determining whether hydration (giving fluids) is appropriate, and providing comfort without artificial ventilation. The patient should be monitored by a nurse who can help to make him/her more comfortable by treating pressure sores (bedsores), bladder and bowel needs, immobility, and secretions. In some cases, when symptoms are unbearable and cannot be relieved, sedation may be offered to ease patient suffering.

That pretty much sums it up where we are today. At Fort Roots waiting. The one hope that I hold out for is the promise of Charles' primary care oncologist that told him that if it ("it" being death) became an inevitability then he would release him (at Charles' request) with pain medications to keep him comfortable and send him home. He told him that right in front of the entire family. Promised him.

Why do I have the feeling the doctor is lying? Why do I, in a way, hope he is lying? Why do I feel that my family doesn?t want Charles to come home even though they all promised Charles they would support that and not let him die in the hospital? Maybe because, in private, they have all reneged and told me they can't handle Charles being at home and dying and no one can care for him as he will need.

Who am I to bring into question or expose their secret (secret at least to Charles) whenever I myself cannot afford (in time and money) to be there to take care of him the way he will need to be taken care of at the end. Who am I to sanctimoniously criticize or question their love or devotion of Charles by their unwillingness to sacrifice and watch him die in his or their home? I can't. I simply can't, though it angers me to know I am hiding from him the obvious truth of the broken promises made. But I can't because I too am guilty and realize that not all promises can be kept no matter how sincerely pledged.

Emotional Twilight Zone of the Brain Dead Zombies

After driving back to Atlanta from Little Rock through the pouring rain I finally arrived home around 11 p.m. EST feeling like I was drained of all capabilities to think or feel anything. Yet, I was up by 5 a.m. the next morning going over the nearly 300 work e-mails that have accumulated during my absence of the last 11 days. I found myself merely clicking and staring without comprehending much of what was being said. The only things that stood out were the glaring lack of apparent support I've had from my staff while I was gone. More on this later, I am sure.

I went through the motions of getting ready for work and dreading trying to concentrate beyond my own skull. I spent much of my day shuffling papers in an attempt to organize an overwhelming workload and unable to pick up my phone to talk with anyone for fear of getting too involved or being unable to speak without choking up. Staring blankly at my computer screen and counting the ceiling tiles doesn't get a lot accomplished, I found.

I also discovered I was more tired than I think I may have ever been in my life. Tired to the bone, as they say. Tired and drained emotionally (how many times have I cried over the last several weeks? How many times SHOULD I have cried over the last several weeks?). Exhausted to the point of mental shutdown beyond the basic functions necessary to keep my heart beating and my lungs breathing. Seriously tired.

My loving wife recommended an early bedtime after drinking some chamomile and valerian root tea and I took the opportunity without hesitation. I slept better than I had in several weeks and am feeling much better today. However, the work is still almost insurmountable and intimidating but I think a lot of that is because my head still isn't screwed on straight. Hopefully, I will make some headway today and use the weekend to do some more catch up and resting. Is it possible to catch up on work AND rest at the same instance?

Ayden Harper Stowell Arrives

My first grandchild, Ayden Harper Stowell, born: February 22, 2005 @ 7:25 p.m. CST in Little Rock, Arkansas USA. 6 pounds 14 ounces and 19 3/4 inches long. Mother Shannon Marie O'Connor-Stowell and Father Mark Stowell are doing well and are jubilant at his arrival after a worry-free delivery at Baptist Medical Center.

The irony isn't lost on me of the potential for losing my younger brother while gaining a beautiful new life in my grandson. My emotions are so balled up in me right now that I cannot really comment too much further but will only say I am blessed beyond measure.

I am opting to be called Papa and hope this sticks. Seems a bit more dignified and "classy" as compared to "grandpa" or some other such moniker. I am still amazed that my little girl has grown up so quickly and is now a mother herself. I had constant flashbacks of her own birth while awaiting Ayden's arrival.

Life is so short...

The Normal Life

I am sitting in the waiting room of CARTI waiting for Charles to have his first radiation treatment with this new bout of cancers. He continues to decline and weaken. This morning he told me he didn’t know it took so long to die. I had no response for him and my mind searched frantically for something positive I could say. “Maybe you should be thinking about how long it takes to live, Charlie,” I was finally able to whisper. He looked at me and smirk spread across his partially paralyzed lips. “Yeah,” he croaked. “Yeah.”

Dr. Pena (not his real name but because his real name is so hard to pronounce he tells us all to call him that), briefed us on the results of his evaluation. There is a “slight” overlap of soft tissue that was the uppermost area of his previous treatments that will be exposed to radiation again during these treatments. He is concerned over this but feels he can reduce the impact by only giving ¾ of the dosage recommended in hopes of shrinking the tumor enough to be able to retarget the radiation cone outside of the overlapping area. He wanted us to know the risks of radiating this overlap area. It may mean anything from surgery or antibiotic treatments to correct the problems that could occur… or even possibly death caused by the very radiation that we are hoping will save (or at least, extend) his life.

I am sitting in the waiting room of CARTI waiting for Charles and praying. God, are you really listening? I am sitting here wondering what I am going to do as my time draws closer to having to leave and go back home and try to live a “normal” life. Back to my wonderful wife and 9 ½ year old son and the life of being father and husband. Back to my job that I have tried not to think about for over a week while all of my emotions and thought processes have been consumed by grief and grasping for hope in the slightest signs of improvement with Charles. Back to being out of the loop and only hearing second hand updates on Charles’ progress that never seem to contain the answers to the questions I would have asked had I been there in person. Back to waiting for that phone call that I don’t want to answer that will tell me that Charles’ suffering is finally over and he’s gone. Back to the life that I have so often taken for granted and now cannot allow myself to do so again.

Things must be different for me. I must take the soul searching lessons I have learned these last months and apply them to my own life so that when it is my time to face death I can do so knowing I have given it my best shot and will leave the world somehow better than when I was born into it. Honestly, I have not done that to this point in my life. I have half-stepped when I should have leaped. I have procrastinated when I should have been proactive. I have complained when I should have praised and counted my blessings. I have sat when I should have been running. I have dreamed when I should have been making those dreams a reality. I have been depressed when I should have been filled with joy and awe of life. I have succumbed to fear when I should have had bold courage. I have remained silent when I should have been shouting from the rooftops.

God forgive me for I have not lived or loved as I should have. God forgive me for I have sinned in what I have done but more importantly, in what I have not done.
I have a lot of internal rewiring to do…

Charles’ biggest fear is dying alone. I am powerless to promise him that that will not happen. All because I must soon return to my “normal” life and leave him to whatever his destiny is in my absence. I can never have a “normal” life again. Of that I can indeed promise him.

Smoke In My Eyes

I just walked back inside from having a cigarette. The guilt and shame of smoking hangs over me even more than the stench of the cigarette I just put out. I have quit smoking many times in the past but have always found some lame excuse for picking back up the habit and continuing just as if I had never stopped.

Mark Twain is quoted as saying,

“Quitting smoking is easy… I’ve done it hundreds of times.”

It would be funny if it weren’t so damn true and so tragic of an assessment of my own experiences with quitting.

Here I am struggling with the emotions and fears of my younger brother fighting to live through his experience with throat cancer that most assuredly was caused by his life-long habit of smoking (mixed with alcohol) and I myself am exposing my body to the cancer causing agents of his disease. What stupidity and ignorance… what a fool I am when I know the risks and dangers of something I should be able to control. How weak I am and what a poor “witness” to him in a time when he needs my utmost support and considerations. God forgive me. God help me.

I picked up a flyer at the hospital yesterday on one of my breaks from my bedside vigil. It was a positive piece on the benefits of quitting smoking and how your body heals itself beginning as soon as you snub out that last cigarette butt. Maybe contemplating it here in my blog will be an encouragement to me and others who are battling the demon of tobacco. (I don’t use “demon” here as a spiritualization or personification of tobacco but only as literary license to personalize my own struggle with this nasty habit)

When you stop smoking, your body begins to heal itself immediately. If you are thinking about quitting, you should know:

20 Minutes After Your Last Cigarette
Blood pressure drops to normal
Pulse rate drops to normal
Temperature of hands and feet increases to normal

8 Hours After Your Last Cigarette
Carbon monoxide level in blood drops to normal
Oxygen level in blood increases to normal

24 Hours After Your Last Cigarette
Chance of heart attack decreases

48 Hours After Your Last Cigarette
Nerve endings start to regrow
Ability to smell and taste is enhanced

72 Hours After Your Last Cigarette
Breathing becomes easier
Lung capacity increases

2 Weeks to 3 Months After Your Last Cigarette
Blood circulation improves
Walking becomes easier
Lung function increases up to 30 percent

1 to 9 Months After Your Last Cigarette
Coughing, sinus congestion and shortness of breath decreases
Your body’s energy level increases
Your lungs are better able to fight infection

5 Years After Your Last Cigarette
Lung cancer death risk decreases

10 Years After Your Last Cigarette
Lung cancer death risk drops
Risk of other cancers drops

Fighting the Good Fight

Over the past week, nearly 24 hours a day, I have stood by my brother Charles’ bedside in a VA (Veterans Administration) hospital called John L. McClellan Memorial Veterans Hospital in Little Rock, Arkansas. In July of 2004, Charles was diagnosed with throat cancer. That cancer had a hideous and horrific sounding name of Squamous Cell Carcinoma and the family was devastated.

Over the months I have observed Charles decline in health from an approximate 160 pound healthy man to a 94 pound skeletal wraith barely making a huddled mass under the rough government issued hospital blankets. In fact, it is hard for me to focus enough to even consider the husk of a human lying there as being the same person I know as my younger brother.

Charles is an Air Force veteran and thus qualified for treatments through the VA. He was a part of a phase II experimental protocol clinical trial that consisted of large doses of a three drug chemo cocktail and 35 consecutive days of concentrated radiation treatments… the last two weeks of which were two-a-day treatments. The treatments were considered the best hope of beating the Stage IV cancer even though it was unknown if he would survive the treatments themselves. The last radiation treatment was just before Halloween of 2004 and the following December he was declared “cancer free” after his CT scan. Charles and the family were elated and whispers of a miracle circulated even though there were some who felt uncomfortable with such a pronouncement.

Charles struggled with recovering from the treatments and continued to lose weight and fight dehydration and malnutrition and trying to control his pain. Several more stays in the hospital to keep him hydrated finally led to one night when he burst a blood vessel in his throat and found himself once again back in the hospital with complications. Emergency surgery to cauterize the wound ended up revealing that there was what looked to be new tumors and the nightmare deepened.

That brings us to this week and the long hours I’ve spent at his bedside as we all wait for what is to come next. A two inch tumor as been discovered behind his nasal passages and is pressing dangerously against his brain cavity. He has partial paralysis of his face and right eye. It is unknown if this is new cancer or a metastisization (to spread to another part of the body, usually through the blood vessels, lymph channels, or spinal fluid) of the old tumor. He has already undergone another round of standard chemo and they are pumping him with steroids and electrolytes to prepare him for radiation in hopes of reducing the tumors in size and thus relieving the pressure on his brain.

He will be treated at CARTI with the rare and famous Three-dimensional (3-D) conformal radiation therapy. This treatment is an innovative high-technology radiation technique. Computer simulation produces an accurate image of a tumor and surrounding organs so that multiple radiation beams can be shaped exactly to the contour of the treatment area. Because the radiation beams are precisely focused, nearby normal tissue is spared. CARTI is one of only four locations in the United States that has the equipment and technology to do this sort of treatment. I believe this is also called Tomo-Therapy (also read this and this) and is considered a second great hope for those who have a recurrent cancer or one too large to remove with a gamma knife treatment near the brain.

All of this is a severe over simplification of what is going on with my brother and what he is facing in his battle with this insidious disease. I thought that maybe putting some sort of verbal “face” on it here may help me to cope with what’s going on. It doesn’t. The tears and fears are all still here in my heart.