Free Sony EBooks: Free ebook sample of "OUR ROSE" by Gusdavis Aughtry

PREFACE

Rose always wanted to hold a fundraiser for Alicia that she’d met in treatment. Alicia had done a newspaper chronicle about her illness and Rose recognized her one day and they formed the inevitable bond of breast cancer patients. Even at her sickest, Rose was constantly thinking of others. She was constantly talking about the excellent care she’d received from her doctors, nurses, and staff. From my perspective, Rose could not have received better treatment. Her fight for 10 years centered around her oncologist and the Infusion Center at UCSF (University of California, San Francisco).

Rose committed me to follow up on the fundraiser idea. She said, “Why don’t you start a blog and turn it into a book.” I don’t have a clue how Rose knew that I wanted to do it. I needed some way to channel my sadness which I recognized. Thus, “Blogging on Rose” began with Rose’s permission. I already had several going as writing is my hobby. Some have a garage full of tools, play golf, whatever, I write. So writing about Rose just seemed natural and I had just gotten an IPhone, so why not? Rose would say, “Look Out!, here comes his iPhone.” At first, I brought my computer, but somehow it seemed a little intrusive and distracting as I sat by Rose’s bed and pecked away. Rose mostly slept. ( iPhone users can just peck away). There’s no way for me to convey how significant to me and my own grief, writing about the struggle and the process truly was. Thanks Rose for allowing us to share your journey.

The trips to the Infusion Center were incredibly emotional. The staff at the UCSF Infusion Center are saints. There is no way for me to convey how great they are. It is almost worshipful as I watched them. I would not want to call them by name for fear that I might overlook someone. But, to me, once a patient entered those hallowed rooms, nothing else mattered but the care of the patient. It was no waiting, blood pressure, comfort, is this OK, want some water, tea. They’re a bunch of paratroopers, everyone of them.

I know sadness and a kind of nostalgic grief that seems to be a part of my life. When I shared this with friends, “it’s the nobody’s home look?” I’ve never viewed this as negative. For me, it’s probably related to Vietnam. To describe the kind of nostalgic grief that pervades me is often more reflective than anything. I want to cry, to kick myself for having been away from Vietnam for almost forty years and still dealing with that perculiar sort of grief. Like so many of my buddies, I’ve probably got a little or lot of PTSD (post traumatic stress disorder). I admit upfront, I have often been angry because of Rose? Or, my buddies in Vietnam? Grief has been a part of my life it seems for a long time and I’ve seen an enormous amount of death. I remember going on R and R (Rest and Relaxation), meeting Jackie for a wonderful week, but then returning to find my best friend had been killed. Anger filled me like some giant swelling. I cursed. I cried. I was so angry. In my infantry unit in Vietnam, over a six month period, five or more soldiers were killed every day. Over a twelve month period, my unit had a 70% either wounded or dead. When I was a chaplain at Letterman Army Medical Center on the Presidio (when it was a thriving, teaching medical center), we had at least one death every day. The population was older so it was understandable. In Vietnam, I thought that I had “bought the farm” at least three times. Maybe that is part of it. The memory is just as vivid as it was yesterday. And, when you are sure you are going to die and don’t, every day you live is a day you were never promised. I know this “sounds a little nuts”; but often, when I was with Rose, I would think of those times. My young soldiers in Vietnam and Rose didn’t deserve to leave us so early. Damn.

There is no timetable for grief. Because I have stayed involved with many of my buddies from Vietnam, the reminders come more rapidly. Occasionally, I want to share my feelings with some people and they want to give the inevitable answers. This is one of the real dilemmas for someone like me who knows many of the perceived answers, noway--no clear cut answers--there are no answers. Often I must admit that when I want to share my sadness, more often than not, I keep them to myself.

We all die, let’s face it. Just fact. The military chaplaincy is laden with experience; and, in combat, death is simply a given. Consequently, I came to this time with Rose with a kind of resignation--No Sweat, I thought. But nothing could have been further from the truth. As I got more involved with Rose--taking her to treatments--seeing her die slowly affected me more and more. It absolutely dug into my soul. The recording of Rose’s bravery became more than just an account; it became a wrestling with me, of forces both outside and within. I felt like Jacob in the Old Testament. He wrestled with the angel and wanted a blessing. All I wanted was to gain some understanding, to hide my grief, and maybe even put on a “good face” which didn’t seem a lot. Somehow, I made it through, probably because of Rose herself. Until the very end, she always wanted to move forward with the next treatment, the newest experimental study. Rose did not waste her time on grief.

I once read that writing is merely another form of conversation. The most wonderful compliment I’ve ever received about my writing is that it’s like sitting down and having a conversation with me. My greatest desire is that my comments be a dialogue that honors Rose. In this conversation, I can’t tell you how much I still miss her. It is very odd when I try to look at it objectively. We actually only saw each other for a few hours one day a week over several months. Yet our conversations and time spent together were so intense--an amazing experience--and I am determined to honor her life now. It’s all I can do.

Think of this book as a journal of time spent with Rose during the last few months of her life and thoughts after her passing. Some entries have been extracted from the “Hanging out with Rosey” Blog. Other entries have been added for clarity and explanation. The first entry titled, “The Worst Day Of My Life” was written as if Rose wrote it. It describes what happened the day of her last treatment and is seared into my soul and I wanted to share it.

THE WORST DAY OF MY LIFE

Rose passed transitioned from this life into the next in October 2008 after a ten year battle with breast cancer. Rose was always so brave. This was her very last treatment. If this wasn't the worst day of my life, it was in the top two. I began to replay it in my mind and thought: if it was bad for me, it must have been three times as bad for Rose. I decided I would recount the day I imagined how she might have experienced it When I was wrestling with this book, these thoughts grew out of my thinking that we might do at least a portion of the book as if she was writing it.

I have got to get out of the bed. I wish I could stay here all day. This is going to be such a hard day. How can I skip it? Why am I keeping this up? (Crying)

"Mom, I have to get ready." I feel so badly for Mom. I know it is going to be so hard for her when I'm gone. Am I talking about the day or am I talking about dying. I think about it lots. Mom won't have to worry and fret. It is so hard on her. Maybe it's time.

Oh, I hurt so much. How am I going to get down the steps? Jerry will be here soon. He will figure it out. I hurt so much. "Mom, see if I can sit up." Crying.

"I can't do it. Get on this side and let's try it."

"Rose, I'm here, let's do it." Is he really that upbeat and cheerful always? Who is with him?
"Rose, this is my friend Adam, he's a lawyer but let's not hold that against him.
He's kind of cute.

"Rose, I think that if we put you in a chair, we can do it." ( The struggle down the steps is always a challenge) I don't think so. Ohhh, I'm in so much pain.

“The chair doesn't work. Let's try the wheelchair. Slowly Adam.” Oh, this is hurting so much.

Finally with them and the wheelchair, we make it down. Jerry picks me up and puts me in the front seat. Just as we are about to leave, one of my friends from high school sees me. I feel so bad. She comes over.

"Oh Rose, how are you? I'm so sorry". She starts to cry.
"Don't cry."
"I'm OK. I'm so sorry, Rose."
"I'm just headed to Mount Zion for my treatment.”
She keeps crying. "Rose, I am so sorry." She reaches down and hugs me.

I have to rest. Jerry is quiet, thank goodness. We turn onto Union, up toward Van Ness and all the lights are synchronized. How many times have I done this? A beautiful day. I turn to Jerry. "Maybe we could ride out to the beach."

"That would be great." Both of us know it's not going to happen. How many times have we said this? When today is over, all I will feel like doing is falling back in the bed. I'm so useless. If one more person tells how inspirational I am, I'm going to scream.

"OK Rose, we have to have parking karma. There's nothing in front. Whoa, look at this, Somebody is coming out. Rose, you did it again. HooAhhhhhh!"

"Hang on, have to get the wheelchair out. OK, Rose, here we are.
Now, let me lift you in."
"You know I can't help you, don't you?"
“Got ya."
"I know you have back trouble, can you do this?"

"No sweat Rose, piece of cake. Don't forget, I'm a paratrooper, well, an ex-paratrooper.” She only weighs 80 pounds, no sweat at all. “OK, the wheelchair is stable."

Jerry slides his arm behind my back. He's trying to be gentle, but Ooohhh, it hurts so much. I can't cry. Please God. I'm in the chair, some nice man offered to help. Everybody's so helpful.

I'm so tired. So glad that I can rest I'm in the lobby for a minute. I know this person. I can't remember her name. Thank God, Jerry is intercepting her. He is so good at this. I am so tired. I don't know how much longer I can go on like this. At what point do we stop. I think I'm going to talk to Michelle today.

This is taking forever, but I guess I don't mind. Jerry is pretty quiet today. He's over talking to this guy. I don't think he knows him but he regularly talks to strangers. Amazing, acts like they are old buddies.

Here we go. I don't remember the tech's name. I don't think he's ever told me. He's always so kind. He smiles, "Rose, let's get you on the scale here." I can't do it. I can’t stand, no strength in my legs. I feel myself about to cry. "Oh, no problem. Let's see on that blood pressure." It won't fit. He wrestles with a cuff and then put my finger in the whatever it is called. I smile to myself. Where did I hear that word? I think at the Boys and Girls club. I wish I was back there. Funny how you think of things.

Michelle’s office is pretty stark. The usual players are there. A couple of clinical trial types. One is the same-been with me before. I've been through so many. What I thought all along? That there is some magic bullet that would take care of it all. There isn't. Michelle comes in.

"How are you, Rose?"
"OK, I guess."

Michelle puts her stethoscope on and says, "Let's get you up here." I try to move and fall out of my chair. Everybody seems motionless, except Jerry. He is on the floor instantly with me, holding me up so I don't fall backward. Michelle and the nurse immediately kneel down and sit on the floor. I guess it could be a funny scene if somebody came in. Here we all are sitting on the floor.

"Are you OK, Rose?” Michelle says. I nod. She examines me. I am still sitting on the floor. This is the second time when I am so weak that I could die. At the PET scan I was so bad. What a mess. What can I do? I hear talking. It is Michelle.

"Rose, it seems that what we are doing is not working. There is another possible trial."

I look at her. “I know.”

She knows. “Why don't you think about it?"

The Infusion Center seems quiet. Oh, somebody's in the bed here. Oh, I do hope Bruce got me a bed. Here he comes. "

Darlin’, I have you a nice quiet room at the back. Come on.” He pushes the chair back to the bed. Bruce reaches under my arms and slightly lifts and moves me to the bed. He's so gentle. I stare at the ceiling. I am cold. Here is Bruce with warm blankets. I love Bruce.

Michelle comes in. She sits down, stands up. She acts like she wants to say something. Is she crying? She leaves.

"Darlin, you need some juice, potassium, let's see what else?” I smile at Bruce and Susan, another nurse that I know well. I know them all. They are so wonderful. She comes in and pats my arm. I close my eyes. I'm so sleepy. Jerry is sitting at the end of the bed, looking forlorn. Poor guy. He looks like he wishes he could do something.

I do feel better. All those juices I guess but usually it lasts for just a little while. I guess my body can no longer fight off anything. Bruce and Jerry slide me off the bed onto the wheelchair. I smile. "Don't let me go again. One scene is enough for the day." Bruce looks a little bewildered. "Oh, I didn't tell you. I fell out of my chair in Michelle's office." Poor Bruce, he looks stunned. "Oh. Bruce my baby, it's OK, just trying to give everybody a thrill."

On, the way out, I want to check on my next appointment. We stop. I change my mind.

"Let's go,"
“I thought you wanted to check on your appointment.”
“Changed my mind.”

I pat Jerry's hand. He smiles. We get in the elevator and head down. We go out the door, it is a little overcast. We are walking to the car. Well, we are not walking, I am in the wheelchair. Jerry opens the door. He slides the wheelchair close to the car.

Jerry tries to reach under me. I'm trying to help. I try to move over on the seat. I can't help. This hurts so much. Oh no, I'm not on the seat. I'm sliding off. Help, I'm going to hit the pavement. This hurts, Jerry's hands are under me. He has cushioned the blow. I know this must have hurt. I sit on his hands for what seems like a long time.

"I've got you, Rose, just relax." He slides me back up and across the seat and hugs me. He buckles me in. I sense the relief as he goes around the car. I’m resting but where is Jerry? Finally he gets into the driver's side.

Our next challenge is getting up the steps. I do hope Glen is there. I don't know how we'll manage if he isn’t. I think I'm going to cry. I'm so tired again. Poor Jerry. I'm going to lay my head back and relax.

Silence.

Oh no, Glen isn't here. He is usually standing outside. Jerry is going in to see. Here’s Mom. I had to call my Aunt because my Mom couldn’t hear the phone. Happens a lot. Poor Mom. I hurt so bad. I can't go through this again. Here comes Jerry.

"Rose, Glen isn't here. I can carry you up the stairs."
“I'm afraid you'll hurt yourself."
"No sweat, Rose, I'm an ex-paratrooper. We can't forget that."
"I know but what about your back?”
"What back? Rose, just put your hands around my neck and no sweat."
I hurt so. He's doing it. We going up the stairs, I think it’s OK
"Rose, I'm going to lay you on the bed now."
“Thank you this is fine.”

July 17, 2008

INTRODUCTION

Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections, but instantly set about remedying them - every day begin the task anew.

- St. Francis de Sales

Rose worked with Jackie, my wife, for almost twenty years. She was Human Resources person and when the company was sold, became the health benefits administrator. Rose was great at it, always pleasant and cooperative. Jackie would always say that she was a master of forms. And, often when Rose would bring something into her to sign, the refrain was, “Rose, just tell me where to sign.” Always, Rose was the kind of person who never forgot a birthday and always thought of others. The mantra was “Everybody Loves Rose.”

Jackie tells me that all the office staff remembers the day that Rose got the call, "Come in for a consult." And then the diagnosis, malignant. How did this happen? Rose’s family and friends, in a sense, were more devastated than she was. Rose’s response was “OK, what do I need to do next."

**In April, Rosey had her anniversary of having survived cancer for ten years. Since that time, the cancer has spread about everywhere in her body: brain, back, bones. Here it is ten years down the road and she is still going. What an inspiration!

I have been Rose's primary transportation for several months. Jackie was taking a turn and one day couldn't so I stepped in. Since then, it has mostly been me. Why? Pure inspiration for one. Rose is so brave, like the energizer bunny who is not quite so energetic but keeps right on truckin’. In the last year or so, I've lost track-so many things have happened around Rose. I've seen what it means to be brave, not only with Rose but all those who share her diagnosis. The bravest of the brave!  Ten years fighting an insidious disease where others would have quit. And, I constantly am saying to myself, why? Well, who knows other than Rose. Her quality of life is not good to say the least. She is weak, every new medicine reacts with another, creating these enormous side effects but she keeps on going. I asked my doctor daughter; "Well, Dad, I can only tell you what the doctors will do. When you have someone like Rose who is young, regardless of the prognosis, as long as Rose wants to fight, they will do it." Well, Rosey is fighting.

This isn't meant to be sad. I'm afraid it will be, but it’s life. When I get down about it, I think of Rose and it is "suck up" time. God bless us all.

**I will probably mention this several times but I’ve wrestled whether or not to do this as present tense as I did the blog, present tense. I think so. From time to time, I might switch but mostly but mostly it will be present tense. God bless us all.

CANCER'S SUPPORTIVE COMMUNITY

I can't say enough about the professionals that I've met through Rose at the Infusion Center. They go about their work with an efficiency that is unreal. They hustle and bustle around. God bless them. I don't know how the staff gets paired with the patients, but Rose got lucky. Bruce, Rose's nurse is absolutely phenomenal. So super. Bruce comes in and talks to Rosey, "Today, we are going to do this. Your potassium is not where it should be, the blood count looks OK but maybe we ought to do this." And on and on, He is in and out, swishing around, interjecting a few personal tidbits into the conversation: his dog, his potential trip to New York. He hugs. He is great. The fact that Rose's life may or may be ebbing away and ending at some indeterminate time never enters Bruce's mind. I am often simply overwhelmed. In short, the care is magnificent. What can we say or do to convey appreciation.

Enduring

In the Infusion Center, a quilt hangs on the wall across the hall from one of the treatment room. On one square is a quote by Anais Nin. At the bottom, the name “Rose” is signed. I don’t know if it was our Rose, but regardless, what a metaphor for us: Life shrinks or Expands according to our Courage. What in the hell does that means?

It is very hard to know how much emotional pain Rose endures for family and friends. This has been a good function for me. Rose doesn’t have to “buck” up for me. On the road home once, Rose was leaning back on the car seat, eyes closed. I looked over at her and and just at that moment, she opened her eyes and gave me a faint smile. She said ever so softly, “I am so glad I don’t have to pretend with you.” I knew exactly what she meant and only hoped that I never betrayed that feeling. Inwardly, I wanted to cry.

I think there are times where we are all overcome with grief when we think of Rose and her suffering and prospects. We want to comfort and yet need comforting. In some ways, this irritates the daylights out of me for myself. The worst thing is that Rose needs to be worrying about is us. It is her that we think about. But, it’s impossible to get away from our feelings. We want to cry, curse, shout, or be in abject denial of what is. But, we must put on a “good face.” I’ve got to hide my feelings from Rose. I always want to say: God bless Rose and God bless us. 

July 19, 2008

Grief

Grief is a title wave that overtakes you, smashes down upon you with unimaginable force, sweeps you up into its darkness, where you tumble and crash against unidentifiable surfaces only to be thrown out on an unknown beach, bruised, reshaped. Grief makes what others think of you moot. It shears away the masks of normal life and forces brutal honesty out of your mouth before propriety can stop you. It shoves away friends and scares away so-called friends, and rewrites your address book for you.

Stephanie Ericsson Compassion through the Darkness

I’ve said this so often: there is no timetable for grief. Grief, death and dying have always been a mystery to me even though as a minister/chaplain, I’ve been involved in it more than most. Grief is so pervasive and there’s no set way that people face their grief. This morning, I’m feeling it. Rose has me by the arm. She is unsteady and I’m always thinking that I need to catch her if she stumbles or falls. My heart seems to be heavier than usual but Rose is upbeat. Well, what is new! Thank you Lord. Rose says hi to someone in the elevator that she knows. And the person hugs her. Later on Rose tells me that she knows her from the Infusion Center. I smile thinking that Rose is one of these people who is born with a kind of intense human compassion. I can’t help but think of what all of us are dealing with. We are on this elevator and everybody on it is facing their own personal trials. God bless them. I look at the floor and make up my mind to put away my sadness. I think of Vietnam. The elevator ride reminds me of going to the “field” (euphemism for the battlefield) for the first time. I was in the helicopter with four other guys and for forty years, I’ve wondered what happened to them. Did they make it? Where are they now? It’s amazing how the mind works.

I know many of the answers about grief; after all, thinking on issues like grief have been part of my life seemingly forever. The guru of what grief means is Dr. Kubler Ross who defined the stages in her book, On Death and Dying. Her first stage is SHOCK. Wow, I can’t believe this is true. How did this happen. I don’t have anybody in my family with cancer. What does it mean? The second stage is DENIAL. This can’t be happening to me. I am not ready for it. I have plans. I feel great. Then ANGER. How dare God! I am healthy, lived a good life. No Way! In the book, Voices of Breast Cancer, I was so inspired that many of the women didn’t hesitate to voice their feeling of anger. And, a couple of times I saw it come out in folks who were in treatment. God bless them. Then, BARGAINING. I’ll do anything if this passes, what about another test. Let me live to have children or let me see them graduate. This is one of those times when someone wants to delay or postpone what may be the inevitable. So sad. Lastly, the dreaded DEPRESSION. What difference does it make? I’m going to die anyway. There’s no point to anything. Finally, ACCEPTANCE. It’s going to happen. I’m going to do the best I can.

I don’t know where Rose was in these stages, but I can tell you this. I saw the stages in most that came for treatment. Rose seemed to never waver in where she was. There were times when I wish I knew what she was thinking. But, often, I asked her and she’d tell me. For instance, once on the way home, Rose looked out the window and was deep in thought as I was prattling on. She said, “You know I want to live for my Mom.” She had some secret compartment in her that made her keep going. Dang if I knew what it was. We talked lots about death and dying and even Kubler Ross’s book. I asked Rose if she wanted me to get it for her. “No, you just tell me what it says.” I laughed, “OK, Rose!” as I went on wallowing in my own grief as I was “bucking up”. If I had to put Rose in one of Kubler Ross’s stages, it would definitely be, ACCEPTANCE. She was at peace with it as she kept on “truckin.

Sometimes, I think, there’s an inevitability in what is coming. Some have accused me of being morbid. Not so, I don’t think. Death is simply inevitability and why should we mind talking about it. One of my Vietnam buddies that I’ve lost track of and hate. He was one way out character. He would come to see me when I was the hospital chaplain at Letterman. U. S. Army hospital on the Presidio). Riding his Harley, dressed all in leather, hair half way down his back, big bushy mustache and a few tattoos. When he came in the front door of Letterman, all traffic stopped. I would usually meet him in the lobby. I loved the guy. He was a great soldier and who knows about his life. But, I will never forget the last time I saw him. His long time soul mate, as he called her had been diagnosed with breast cancer and was dying. When He told me this, he fell into me and sobbed and sobbed. It was heart rendering. Just a short time after then I got a note from his Helen, asking me to do a couple of things after she departed this life. And, then she said, “please don’t fret for my passing. Death, after all, is merely a natural course of living.

July 20, 2008

Hanging On

One night on the TV program, Sixty Minutes had do do a cancer patient (John Kanzius), who invented a machine that may kill cancer using radio waves. The treatment would not cause side effects and would diminish the need for a lot of medicine. He wasn’t even a doctor but a radio and TV engineer, didn’t even have a college degree. His interest had been piqued because his own treatment for his non-Hodgkin’s lymphoma was so devastating: the sickness, nausea, weakness and overall problems with chemo. I thought of Rose and always asked her after treatment, "Rose, how do you feel? Better?" What I am always hoping for, (more an assurance for me than Rose) is that she feels great. What it usually came from Rose, "OK," when in fact, it was probably awful.

This treatment described by Leslie Stahl is incredibly promising with possibilities for all cancer patients. The imagination is staggering as I think of Rose. Rose, who has survived ten years of excruciating treatment. The hope for Rose’s future is more of the same: chemo, sickness, weakness, chemo, more chemo. But if she hangs on, with an invention like this, WHEN it works, Rose could be cancer free, get a shot at a real life. Wow!

Short of that, what to do is a big thing. Rose is where she is. When you have cancer, there are lots of decisions to make. I just read a story of a cancer survivor who talked about them and without warning she said the “F” word. I confess, it is my Janice Farringerfavorite word because it conveys anger and frustration for me. F…!

(The 60 minutes story last aired July 16, 2008. John Kanzius passed away in February 2009 but his work continues through the Kanzius Cancer Research Foundation. )

July 22, 2008

PAIN

Henceforth, I will accept what I am and what I am not. With my limitations and my gifts, I shall go on living life as long as I am in this world and afterwards. Not to use life- that alone is death.

George Sand (who had adopted the male pseudonym to cover the fact that she was a woman)

Pain is a heavy duty issue for those who are seriously ill. Figuring it out and finding something that works is no small thing. I once had shingles and without a long explanation, let me say that it is nerve pain and excruciating. It lasted for months and part of my problem was that I couldn’t take any of the pain medicine. It made me sick. This surely doesn’t equate to what cancer patients have to endure, but I have a smidgen of understanding. And, to me, there really should be no reservations. Whatever works.

I’ve read somewhere that what those who are really ill fear most is pain. My experience tells me this is true. Over the course of several months in hanging out at the Infusion Center, guess what seems to work better than just about anything? Pot/Cannabis-- what works for those suffering is all that matters. Rose and I would joke about it and I don’t think she ever went the pot route but didn’t have any objections. Pain drains and takes away their vitality. So, my view is if pot helps, go for it.

Rose and I had this intense conversation once about it. She asked me what I thought. “Do you think we’ll ever legalize it she wanted to know? If so, what would I do.

I would sometimes watch the nurses stick Rose, see her winch and on very rare occasions, cry: a kind of silent crying. Then there would be times, I would leave the room. Now that I look back on it, I don’t know why. Maybe the pain of it. Did those like Rose get use to it. I don’t think so but it was more a kind of resignation. I think being nauseous was worse than pain for Rose. Then again, what the hell do I know.

July 24, 2008

Paperwork

You may think the world is black and white, and you’re dirty or you’re clean. You better watch out you don’t slip through them spaces in between. Life ain’t nothing but a cold hard ride. But I ain’t leavin’ til I’m satisfied. Cross Your Heart, Bruce Springsteen

The thing that has always gotten to me since I’ve been hanging out with Rose is the paperwork. I really don’t know any way around it, but it can be so frustrating. Think about it: a person is fighting for their life and suddenly, is confronted with issues of insurance and often other things which have to be enormously frustrating. Rose was good at it and I’ll have to say she had it down to a science. There were times that she discussed the issues with those in the waiting room who were struggling with filling out one form or another. Rose, when asked, would say, “Check this box or say this.”. It was not that those who were charged with the administrative tasks were uncaring, but there was sometimes the attitude of, “the paperwork is important” when it really isn’t.

When I didn’t accompany Rose to see her doctor, I would sit in the waiting room and observe patients struggling with the paperwork. This isn’t criticism as much as the reality of life. On one occasion, a patient burst out crying and in frustration left. I wanted to get involved but didn’t. As best I understood, her insurance had not switched to her present carrier. Something about leaving her job, going on Cobra, I didn’t get it all. I do know this that she ended up leaving the hospital. This reminded me a little of what we often encounter in the real world. Remember when you could actually get someone on the telephone as opposed to voice mail? Those who first meet the public are the clerks, receptionists who often are overworked and underpaid. What kind of message are we sending? The clerks and receptionist aren’t paid to work with patients who are at their most vulnerable and stressed out times. (I will have to say this for Mount Zion, UC, the admin types really tried) For God’s sake, these patients have cancer.

What should a treatment center do? It ought to be prepared. Have someone available to answer questions or find someone that can be “be there” for patients in crisis. When I was a hospital chaplain, in a crisis at the front desk or clinic, you better believe, the “front desk was calling the chaplain.

There is bureaucracy let’s face it, but still I hate it. In the Army, we use to say, “It ain’t over till the paperwork’s done.” The bottom line is this: I wish that those who are often crushed down with life threatening illnesses didn't have to deal with paperwork. They have a job and that job is doing what is necessary to save their lives. It is one of the reasons I wanted to be Rose's main driver so she wouldn't have to sweat who was going to drive her--calling and asking around for a ride, even though Rose’s friends were more than ready, still, it took enormous effort.

July 29, 2008

Support System

When I enter that beautiful city and the saints in glory draw near, I want someone to greet me and tell me, it was you who invited me here! Anonymous.

Being the consistent support is important to those seriously ill. To me, one of the key issues is for support types to put one’s own needs aside for time spent, to stay in the background but step up when needed. My observation have been that people get pretty excited and involved; but, for most, it doesn't last. This is not a judgment as people have to do what they do and as Dr. Stevenson, my college professor once said, "Most people do the best they can." I think so.

Rose has had a wonderful support system as I can see. She is so loved. Friends, in particular, have been willing to step up to the plate. Friends surface from time to time wanting to take Rose to her appointments. One said to me once, “This is the most wonderful thing I have ever done in my life. I must do it for myself. It is more my need to do something for Rose; me specifically than Rose needs to have me doing it." I understand. I do not know a single incident when friends of Rose did not come through. For most of us, we've felt constantly, "if only I could do more." It has not been, "if you need me, let me know" rather "Rose, tell me what to do and I'll do it."

When you are the support person, how exactly to make sure you are at your best is no small things. Rose has come to this time in her life, having made lots of decisions. Ten years, a third of her life when she was initially diagnosed. Dang! Some of her decisions have been philosophy, even if she didn’t put them in that context. I think that every seriously ill person does many things they don’t think about: cogitate their navel. Rose just “did” but there’s no doubt she became more intentional in what she wanted to do toward the end. A cancer patient’s life is out of control and it doesn’t take some “drugstore cowboy” like myself to know that. Treatment works, it doesn’t work, clinical trials, pet scans, radiation. What to do? Out of control. No right or wrong or yes or no.

August 5, 2008

Why Me? Why Not Me?

For any seriously ill person, not to think, Why me would be unusual. To ask this question is almost always the usual course of action and understandable. Not Rose. From the very beginning of her illness, Rose appears to simply have made up her mind to put one foot in front of the other: Just do it. And once Jackie was telling me she kind of broached the subject, "Rosey, do you ever feel like, Why me, justifiably feeling sorry for yourself?” Jackie's thought was: maybe Rose needs to talk about this. Rose's immediate response, "No, not really, it is not Why me?' maybe the better question is, 'Why not me?' "

Truly, there is every reason in the world to think, why me and a thousand and one other things if one is inclined in that direction. No doubt Rose has the best philosophy and personality to make it work: JUST DO IT!

I always felt that I had a much greater need to cry out or curse and say “why Rose” than she did. I tried to be philosophical. There is a side of me that believes beyond any doubt that death is simply an event, a natural occurrence but it is very hard to rest in that reality when the flesh and blood is sitting on the seat beside you. Somehow, I know it is true that it isn’t the event that is the enemy but it is the disease. Cancer is such an insidious disease. I always think of that short piece I read in the book, Voices of Breast Cancer, the author was making a point. I am human, I’m who I am and I’m fighting this disease. "I will never win the lottery, see an alien spaceship or get attacked by a black bear. What are  the chances? And although the odds are much better, about one woman in eight, I never thought I'd get breast cancer. Not me. Why me? I stopped smoking after college. I practice yoga, donate to charity. I buy breast cancer research stamps at the post office when they have them. I've been a runner for thirty years; I ran the Boston Marathon twice. I eat fish. I don't drink nearly as much as I want to. I never lose at Monopoly.

On the flip side, I cheat at Monopoly, eat entire bags of popcorn, speed on the turnpike. I scream and holler when the boys (she has three) come home smelling like beer. My favorite word is fuck. I haven't washed the upstairs bathroom since last summer. I keep a joke going until it irritates, hold a grudge, enjoy gossip. I re-gift, buy clothes I don't need, lie to my kids about my past: I never inhaled. Studied every Saturday night. Always told my parents the truth. I lie about my age and I need to lose ten pounds. I screen my phone calls. And, my faith is eroding like beachfront property. "

August 5, 2008

Laughter

We need to laugh more and seek stress reducing humor in our everyday lives. Laughter is the human gift for coping and for survival. Laughter ringing, laughter pealing, laughter roaring, laughter bubbling. Chuckling. Giggling. Snickering. Snorting. These are the sounds of soul saving laughter which springs from our emotional core and helps us feel better, see things more clearly, and creatively weigh and use our options. Laughter helps us roll with the punches that inevitably come our way. The power of laughter is unleashed every time we laugh. In today's stressful world, we need to laugh much more. Laughter therapist Enda Junkins

To be honest, I've heard of the benefits of laughter in one's life. I agree, has to be benefits. We would surely be better in life if we laughed more. Who would not believe that!

I had a great laughter experience at the Infusion Center once. The Center is divided into little alcoves where patients sit in big chairs and receive chemo. There are acres of folks it seems--all battling for their lives in one way or another. Beside the patient's chair is a small one for those like myself if we choose to hang out. I do. In Cancer fact, I've asked myself why? I could easily wait down in the lobby, which is much more comfortable, but, somehow, I always think, "It's the least I can do."

Rose is asleep. I often don't know how to relate to those around me. Surely not be my friendly, gregarious, talkative self. This is not the Pig and Whistle bar. Usually, you glance at those clustered with you in your little alcove. After all, you have a connection. You are a hostage to cancer in a way: hostage in that you are sad for the people around you, that you are thinking about your life, that you are in a cancer center. Outside is the sun and the beach is just a figurative stone's throw away.

I am sitting there cogitating my naval, thinking about all of this and across from us are a Latino lady and my counterpart. The Latino woman looks to be about mid-forties, slightly disheveled, not that it is a big deal, and we’re not there for fashion. She has an angelic face. Sweet. A nurse and one or two others come in and explain in Spanish the details of her chemo treatment. She nods. With the treatment flowing into her veins, she and her friend are talking in Spanish. I'm wondering what they are saying. Suddenly, the one getting the treatment busts out laughing. She glances at me. I start laughing. I don't even know why I'm laughing but for thirty minutes at least, we are laughing back and forth: stop, start. Like when you are in church as a kid and get a giggling fit and can't stop. I’m shaking, I’m laughing so hard. It was hysterical. Rose, in her half sleep, wanted to know why we were laughing. I don't know.

Later on as I’m smiling about the event, I can’t help but think of what a universal language cancer is. Issues like immigration status, etc. are absolutely minuscule. God bless her.

August 11, 2008

WHEN TO TALK OR NOT

This may sound simple but not so. Talking about one's illness says Rose can get to be a drag. Most of the time, we support types fit in two categories: we either want to ask questions:

• How are you doing, how do you feel?

• Is the treatment working?

• What does the doctor say?

SEE WHAT I MEAN? Or, the other category is that we don't talk and consequently, we can deny and maybe feel less bad. No judgment here. My experience is that somewhere in the middle is the key. Rose's level of sickness, i.e., feeling badly most of the time dictates it. She usually wants to talk while others are content to be silent. Someone I met at the Infusion Center recently told me that she preferred not to talk because she didn't want it dominating every conversation. And, she said something like, "I simple don't want everybody to know that I have cancer, merely because most would see me differently and that is not good for my psyche." OK!

Then there was the Rose philosophy. Rose had this idea that it was something she was willing to talk about if she could turn it around and talk to the people where they wer. Rose got a great deal of pleaure out of emails that people sent to her. One of the things she told me was that especially if they gave her news about their lives. Here’s what I observed with a few folks. In fact, one told me. Getting an email from Rose to her was like Christmas. But, then, it made her so sad. She emailed Rose and asked how she was doing, wanting to talk about Rose’s cancer. Rose wanted to know “how you are doing, how is your family.” In someone, this might be denial but not with Rose, she really was interested. Now, was this denial. No, I don’t think so. Did it get her mind off her own self. Probably. Rose gave reports from time to time about her illness, where she was, what was happening, her treatment plan. Toward the end, Rose decided not to do this. She saw the inevitability I believe and simply let it go.

One thing I remember about our trips back and forth was that Rose often wrote herself little notes that she wanted to do. She would write down people she wanted to call, to check on things like insurance, talk to her lawyer, change her appointment. And, on occasion, she wrote out her feelings and then she’d crumble the paper up and sometimes, I would find one on the floor of the car. This one I saved and was pretty poignant. “I want the truth about where I am. Michelle is always hopeful but I think I want the truth. Why am I saying this? I know the truth. Still, I think I’ll asked Michelle. I love all of them, they have become like my family. I’ve got to remember to get her babies gifts. Is she going to leave I wonder.”

When I read this crumbled up note, I threw it away but wrote in my Daytimer: “I guess Rose would like to know some finality about her journey. Wouldn’t we all about all our journey which is not over but we can see the end. Damn, I hate this. Rose’s story is still unfolding as well as all our stories. God bless her.

August 12, 2008

Bad News

Just got the word that Rosey has more spots in her brain. What does this mean? I am devastated. Will this never end? Damn! To Rose, it is just matter of fact; but, for me and others, I'm sure, never never just is. DANG! I don't know what it means? Regardless, she has to go in for a day of treatment, gamma knife or something like that. I have to get myself together. If I take her, just have to be like it is routine. This always brings up those questions to me. Is Rose getting any better? Maintaining the status quo, what? Or worse, at what point does a person say, "this is it or enough or does the body finally say enough." WHAT! I want to always be upbeat but also realistic and face what is.

Last night between Olympic events, there was an announcement of the Faith Fancher run/walk to benefit breast cancer. Faith was a bay area newscaster. I always thought that Faith was so sincere and had a great sense of humor in her on air persona. I remember when she was diagnosed with breast cancer and decided to go public and chronicle her treatment. Quite inspirational. She went into remission, was doing great. Then suddenly in what seemed like overnight, she died--such a great loss. In the great beyond, a question I can't wait to ask God is why someone like Faith goes before her time and all these ne'er-do-wells keep right on truckin’. The truth is that I don't think God is very involved with us down here--doesn't make sense that he/she would be. Way too arbitrary, "OK, I'll zap this one, not that one." Please! If He were that arbitrary, I, wouldn't be interested in embracing Him for sure. My thoughts. My rational mind says that it is simply life and guess what? Life ain't fair. 

Jackie and I have this hobby: movies, mainly on net flicks. We rarely go out after dark. I’m scared of the dark and blame it on Vietnam. Another story but we watch a movie almost every night. Movies are a great way to look at life especially if you’re a good iNtuitive. Here’s a couple that relates: Safety of Objects which is essentially a kind of "Crash" movie if you remember Crash (won academy award as best picture). It all takes place in this one neighborhood and deals with the tragedies that befall these peoples' lives. What fascinates me is that you could go into any neighborhood and realize, "everybody has a story." The most compelling one in this movie was Glenn Close's (can’t remember her character’s name) story. Her son, a great kid, terrific musician, all around super, had been in an accident which left him paralyzed, really in a vegetative state. Much of the movie was tied to this kid. Glenn Close said something so interesting when she was relating to one of the characters; she was talking about praying and said, "When you pray, you must be specific, you don't pray that you want your son to merely live but that you want him like he was."

I’m also reminded of one of the writers in the book, Voices of Breast Cancer. She was writing to all her friends and telling them what she needed them to do. (Her main premise was that she didn’t want to talk about herself, rather wanted to hear from her friends about their lives. She was tired of talking about her needs. But, knowing her friends would asked, she dealt with it upfront with, “if you praying sort, please do.” She left the option and here it is in this movie. A little like my buddy, Andy, who is always claiming to be an atheist but says, “May the God of your choice bless you.” I like it.

The other movie and made me think of some comments of Rose’s Oncologist but I’ll hold that for now. The movie was called Pieces of April. And, if you think you know a dysfunctional family, they are not even in the galaxy of this one. However, as you get into the movie, becomes very sobering. Mother played by Patricia Clarkson, one of my favorite actresses (also, in other movie); is dying of breast cancer and much of the movie deals with how the various ones handles the mother's illness: all different and weird. The mother is the most weird about where she is with the illness. And, some things are a little implausible at the end but it is the great thing about the movies, they can make anything happen they want and the way they bring this movie “home” is brilliant.  

Both these movies have the potential to be downers but aren't; again, great thing about movies, can bring about what they want. Not quite so easy in real life.

August 14, 2008

THE TREATMENT

I'm still moping round, thinking about Rose's Gamma Knife treatment. Here is what little I know: Despite its name, the Gamma Knife isn't a knife but is a machine that delivers a single, very finely focused, high dose of radiation precisely to its target, while causing little or no damage to surrounding tissue. Cancer spots in the brain can be treated very effectively with the Gamma Knife. The device aims gamma radiation through a target point in Rose's brain. She'll have to wear a specialized helmet that is surgically fixed to her skull so that the brain tumor remains stationary at target points of the gamma rays.

Talking to various ones as I took Rose to treatment, I pondered “the journey” a great deal, especially the sense of courage, even if those like Rose did not put it in those terms. I think maybe a kind of loneliness that only someone on that journey can really know. Combat is not terribly different than what I was seeing in the Infusion Center. John McAfee, who wrote one of my favorite accounts of Vietnam, said it like this in his book, Slow Walk In A Sad Rain, “I have seen most of these events. Those I haven’t have been told by the old warriors, who talk of such things around poker games, over beers, or when they’re alone and think no one is listening. These are secrets, forged in the hot fires f combat, pressed on the soul like a medal, and polished years later--still gleaming, still hurling”.

Yesterday as I was talking to one of my friends, she became really sad thinking about Rose's suffering. As Jackie is fond of saying, "it is what it is." In our culture, denial is a big part of life but each person must cope in the unique way they can. God bless us all.

August 17, 2008

Perseverance

Is there anyone in the world who appears to have more perseverance than Rose? Nobody that I know. And, it should inspire all of us who are privilege to help. What I’ve come to believe is that we don't get overwhelmed with the process. And, our dedication has to be complete. Honestly, we need to put everything else aside when Rose is on our list. For someone critically ill, it is not possible always to be right on top of every situation. Things change, health changes. Once, we were all prepared to go to Rose's appointment and she was simply too sick. We canceled. Another time, a scan saw new spots in the brain. I was sitting in the waiting room and a doc came in and looked around and left. He came in again and I introduced myself. We walked into the hall and he said something, “I can’t remember what but then I asked, “What about Rose?” “Well, he said, we got a few spots but there are so many more.” I guess I was looking at my feet as the gravity of it had already penetrated me: it surely was no surprise, he said,

“This is about all we can do.”

“How long”

“Maybe six months.” We stood for what seemed like forever, saying nothing and then we shook hands and walked away.

There is only so much that medicine can do. And, I am always fond of saying, “Doctors don’t know. Nobody knows.” I usually find myself saying this as a means of comfort. I’ve heard the stories. My buddy Andy, age 77, is fond of telling how he was diagnosed with cancer 20 years ago and given six months and he’s still around. There are the miracle stories but there are also the more frequent ones. Six months to two years which a doc at Letterman (Letterman Army Medical Center where I was the chaplain for four years.) use to say to me that the standard diagnosis of life and death for the docs with a terminally ill patient was six months to two years. He would say, covering the himself. Most of the time, in my experience, it was pretty accurate. And, while I was with Rose, I saw several who surely left before their time. It is the process but I still hated it. The doc goes by the science of the process, I guess. He or she has to figure out where they want to be or maybe say to the patient and the loved one, “here’s my best guess.”

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