Microcosm

This has been a tough week for me. I have wanted so much to be the helpful spouse and all I have succeeded in being is the miserably sick spouse who needs help. Ironic.
I have been fighting off pneumonia with antibiotics, and all the various medicines needed for fever, cough and the like. Good thing I went to the doctor and got treated. I actually just had an appointment for a physical, but while there found out my "cold" had turned into something a whole lot more.
Keith has been great, as has my daughter Kim. My bosses at school have been great as well, being very understanding.
I'm hoping (and hoping some more) that Keith will avoid this somehow. I hope everyone in the family does. We tried to be careful but this illness brought home how difficult it is to keep germs away. You can wash hands, disinfect surfaces but all those mysterious tiny organisms are waiting -- silent, invisible and potentially dangerous, even deadly.

I have always found the microscopic world fascinating. The hidden lives of things beyond our sight and even comprehension is so immense. How strange to think of it that way. Microbes and viruses live in an environment that is equivalent to the wide open spaces of our own universe. This innerverse is created by us. We are their environment. We are their planets, vast plains, wide skies and distant stars. Perhaps when we are struck down by a cold it is not really much different than one of us cutting down a tree in a forest. Its life is connected to ours, affects ours, but is completely unaware of our existence as separate organisms. It wants to live. We want to live. The universe is simply full of life striving to exist in whatever way given it.

So, I will try to understand the germ afflicting me is simply trying to live out its existence. I will feel no anger toward it. I will accept it as a part of the universe around me. And I will assert my own destiny as a living being to fill my body with chemicals to shake off its hold on me.

Cancer is much the same. The life of cells is a magical one that is beyond the understanding of most of us. Cells drive every part of our amazing bodies. They can adapt and change as needed. And sometimes they become unmanageable -- like a teenager that doesn't know when to stop a behavior that has become destructive. So we struggle to put the brakes on them. We have to force them to stop what they are doing. The life of those cells is in conflict with our life. It becomes a struggle to exist.

Innerverse. Universe. From tiny cell to galaxy -- life is everywhere. We can't become angry. But we can become determined to survive.

What is normal?

I can feel "it" starting to get closer. The cancer treatment is slowly closing in -- starting to take its toll on Keith. I can see it in his face, his body, his energy level. In spite of the fact that he still pushes himself to do many everyday things there is an encroaching fatigue that is now noticeable.

In spite of it all, though, he made eggplant parmesan for dinner and had Karen, Aimee and Luis join us. I guess the long nap helped.

I am mixed on whether it is better for him to keep trying to do things, or take it easier. Under normal circumstances a person feels better with exercise. Does that still apply now?

Questions. Questions. And more questions. Cancer turns everything upside down, sideways, backwards and every other way, but the right way. What are the best things to eat? What should be avoided? What is normal? What is not?

So we read. We write. We talk to professionals. We talk to friends. Then we read and write some more.

We hope that it will all just be over. We wait anxiously for that day. We just want to go back to normal again. Normal has become such a wonderful word. Who ever would have thought that would be a goal in life? We take so much for granted. But, I guess that is normal.

Flu bugs and worry

Never thought getting the flu (or bad cold, or whatever the heck this is) could be so nerve-wracking. I finally picked up one of the nasty bugs floating around my elementary school. This is after weeks of wiping down desks with antibacterial cloths, handing out tissues and telling the kids not to hug me if they're sick.

Ordinarily this wouldn't feel like a big deal, but I'm terrified that I'll give it to Keith. The last thing he needs is a fever, or other flu symptoms. When I'm not asleep or feeling like I can't move, I'm washing hands, disinfecting things and worrying.

Dr. Z told me not to worry too much about it. We told him we've been mostly sleeping in separate rooms while I've been sick. He said that's not really needed. He's probably right. We live in the same house. Touch many of the same things. Share the same bathroom. So we wash hands a lot. I try to keep my distance as much as possible.

Keith has been amazing. He's the one with cancer, hooked up to all kinds of weird stuff. Yet he has fetched drinks, and cool cloths and medicine for me. I have felt so helpless. I'm not the one who is supposed to need help right now. This whole situation feels upside-down.

I guess I just need to learn to say 'thanks.' It's good to have such a caring family.

Thanks, honey. I love you.

Goals

Keith is handling the chemo and radiation so well I find myself waiting "for the other shoe to drop." So far, so good. We're going out to dinner a lot. It's good for Keith to continue to get out and enjoy good food while he can still swallow pretty well. He needs to keep his weight up in anticipation of later difficulties. However, it's not doing much for my "diet" before our daughter Jenny's wedding, coming up in December. Oh well.


The wedding has become a goal and special marker in our lives. Keith's mom needs to get well enough to come to the wedding. Keith needs to be in recovery so he can walk Jenny down the aisle and dance with his daughter on her wedding day. It's the the good news of the family -- the one thing that we all look forward to. Family will come to see us. We will smile again. We will have fun together. We will welcome a son into our family -- one we already love from getting to know him over the past three years. Our family will grow and change in wonderful ways. It's such a great goal to have before us.

Another goal is harder to reach. Avoiding negative feelings. With cancer comes a certain amount of anger and irritability. Some of it is caused by lack of sleep. Some of it is caused by the overwhelming feelings of powerlessness against the disease.

Keith and I have been cranky with each other for a few days. There are times when I feel he is constantly critical of whatever I'm doing. At other times I know that he is saying ordinary things but it sounds like criticism because of the way that I feel at the time. I know it is likely because he isn't feeling well, emotionally or physically. But should I be "nice" about everything because he is ill? Probably. But, at the same time, that's not me. It's not normal for us either. We have always expressed our feelings, both positive and negative to each other. So, while we both avoid getting into any big arguments, once in a while we still get "snarky" with each other.

The negative feelings we avoid are the kind that relates to his illness. We talk of the future with a positive outlook. We talk of his recovery. We talk about getting better. It will happen.

For most of our lives as a couple we haven't really spent that much day-to-day time together since the kids were small. He worked nights. I worked days. At one point he worked days, and (of course) I got promoted to a job that had me on the night shift. My guess is that our sudden evenings together are both wonderful and a little stressful because it is such a change for us.

We need to get more sleep. We need to think before we speak. We need a banish as many "snarky" remarks as possible. But, will we never disagree while he has cancer? I doubt it. If I became some perfect little 50s wife who always agreed with her hubby and never had a bad day he WOULD think he was dying. So, we will settle for realistic goals -- to keep things in perspective, to enjoy our time together, to express our feelings as positively as possible. And, of course, to walk Jenny down the aisle and dance at her wedding.

The stuff of life

Tonight was interesting. We sat with other patients and family members at a workshop at the Cancer Institute in Winter Park. There was medical information, guidance from the social worker -- all useful in one way or another. Certainly just knowing there are people who are available to answer questions is helpful.

But at the end of the session there came a period when everyone started to connect on a deeper level. They shared some of their difficulties and fears. They also shared their hope and determination. Some were facing the early stages of cancer themselves. Some were in the process of dealing with the terminal condition of a spouse. Some were in recovery. Different stages, but all involved in the struggle for survival.

Isn't that all life ever really is? A struggle for survival?
In our modern world we don't fend off wild animals, search for food, build our own shelters or wonder why we fall ill. Many of us, with luck, live to a fairly advanced age. But ultimately, each of us faces our mortality while trying to keep it at bay as long as possible. We speak of death rates as if any of us can ever truly conquer death. Survival is measured in months and years. Although we are all made from the dust of stars -- we are far from immortal. Even stars eventually die.

Cancer, and other life-threatening diseases, force us to face up to our mortality. It reminds us that life is fleeting, precious and fragile. It challenges us to confront our beliefs and pulls us out of the mundane and the routine.

Strangely, it replaces some of those things with an odd rhythm and routine of its own. Radiation, chemo, scans, blood work, appointments, medicines. Rather than taking out the trash or cooking dinner life becomes a series of appointments. We watch. We wait. Then we wait some more.

We ask questions. "How do you feel?" (Please say ok.) "Can I help?" (Please say yes.) Someone else must take out the trash. Someone else must cook dinner. The job of the patient is to live.

Say that again.

The job of the cancer patient is to live.

"Then what is my job?" I ask myself.

The job of the cancer patient's spouse is to love unreservedly. To behave normally. To help when needed. To stay out of the way when required. To ask questions. To be silent. To let him sleep. To encourage him to eat. To do as many things together as is possible.

The job of the cancer patient's spouse is to live. For him. With him.

That is the job each of us has in this brief life of ours. To know that we are mortal. To fight to live as long and as well as possible. And, during that time, to love and care for each other. To enjoy the mundane and the sublime.

We are stardust. We are a part of the universe. We share life and death. Cancer can't take that away from us. Nothing can take that away from us.

About children

I have been amazed by the affection and support I have received from my young fourth grade students. I believe we don't give children enough credit when it comes to their empathatic abilities. After the first stressful week at school when we were waiting for a diagnosis I finally found it necessary to explain to my students, in simple terms, why I had missed school several times and why I wasn't always my usual cheerful self. They were interested, supportive, sympathetic and anxious to share their own stories of parents, grandparents and other family members who had experienced similar challenges.

There were so many who knew about cancer -- knew about the dangers and the fears -- who had lost people they had loved to it. Others knew about heart attacks, accidents, diabetes and more. They understood that people could become ill, get hurt, even die. They felt these things deeply.

They ask about Keith often. They ask about my mother-in-law as well. They care about more than their small, sheltered lives in school and understand the wide world, at least a bit.

I will never again underestimate a child's understanding. They are capable of so much more than we think they are. They are not afraid to show their love and affection and they want the adults in their lives to be happy.

Since that day I am calmer and more focused as a teacher. I don't have to hide my feelings every moment of the day, because they know there are big things I am worried about. Because of that shared experience it is possible to live each day from moment to moment and take care of learning new words, reading new stories, writing paragraphs and all the multitude of minutia that is a part of the elementary school day. And sometimes, we talk -- about big things like life and love and the people we care about. About the wonderful things and the sad things. About what is really important -- being a caring, loving person who takes time to empathize with others.

Kid stuff, really.

On writing

I always thought I would be spending my time writing the great American novel by now. It seems that my writing has become more personal, intense and important than that. Through writing I can say many of the things it is hard to articulate verbally. Through this blog I am able to share my thoughts and feelings in a way that is both immediate and honest.

From the time I was a child my father told me that someday I would find myself doing this -- working, writing, and living with the computer. It is now almost as easy as breathing to sit down at the keyboard and let the words flow onto the screen. Although not always the right words.

Keith is discovering the power of the computer in a new way as well. So many people are sharing his journey, including myself and our children. Wherever we are we can stop and read Keith's blog. Each day's writing is like a tiny miracle. Words that touch someone else for a moment. "Take a peak at me," it says.

I remember a long time ago, when I was quite young, riding in a car on a long trip across the country. My face pressed against the cold glass of the window I looked out at the cars zipping by. Glanced into other backseats filled with children and pillows and toys, also traveling to new places. I remember thinking that each individual is so locked inside their own little world that it would be impossible to get inside. How could we ever really get to know someone else? What were their lives like? Were those children happy, peaceful, contented, cared for, anxious, fearful? What were they thinking? As a child I was taught that we could never understand any of the mysteries of the universe until the afterlife.

All that is only partially true. This tiny miracle of instant communication allows each of us to gaze into the minds and hearts of the other. Keith is able to chronicle his fight with cancer and, in doing so, touch the lives of others. We both share each other's thoughts when we read the other's writing as well. Personal, universal -- intimate, public -- it's a dichotomy of inner and outer worlds colliding in a beautiful explosion of technology and one of the oldest forms of communication -- the written word.

Miracles daily. Who knew?

Some words about communication

Keith is going to see his mom today with our daughter Aimee. I hope he has a glib tongue to explain why he shaved his head, or that Bea is still a little fuzzy with drugs, because he doesn't want to tell her yet about what is going on with him. She is very fragile and finally starting to make some progress in her own fight to survive. She doesn't need the stress of worry added to her already difficult days in the hospital.

While he is gone Kim and I are going to tackle some of the practical aspects of living. All those boxes of stuff from the medical supply house have to go somewhere. The house needs to be cleaned and disinfected top to bottom. I want everything as clean and comfortable as possible for when Keith is not feeling as well as he is right now.

I am so proud of my husband. Not because he doesn't express fear -- because that isn't true and would be stupid, to say the least. Fear is normal and needs to be expressed. And not because he never gets grumpy or anxious. That would mean he isn't behaving normally.

I am proud because he does express his fear, gets irritable at times, feels anxious about the future. I am proud of him because he expresses these things in his writing, his conversations, and in his moments alone with me. There is no phony "macho" thing with Keith. I don't have to guess how he feels about something. I am able to be myself around him as well, because he remains true to himself. He is not pretending to be fearless or stoic. He allows us to share his fears and anxieties, along with his sense of humor, his warmth and his enthusiasm for life.

It's so nice to be married to a "real man." One who knows that communication is the key to a good relationship. It is through that communication that we have weathered some very hard times in the past. This is now (I hope) the hardest time of all for us. It is through sharing and talking that we will get through this together. For 27 years we have stood by each other. It is almost a miracle in our generation to accomplish this and a great deal of the credit goes to Keith for his ability to stick through a difficult situation and say the things that need to be said.

I am grateful that he never shuts me out and that he allows me to try to help as best I can. It may seem strange to say about a man I've lived with for so long, but I am honored by the trust he places in me every day. It's a rare gift. One I treasure.

Amazed and Amused

I have to say that reading Keith's blog about the vanilla flavored "stuff" for the feeding tube really made me smile. Like any good joke there is a wonderful, marvelous insanity to it. Who comes up with these ideas? How much have they really thought about their product and its uses?

I am always delighted when Keith finds these little funny details in life. It is that observation of the absurd that makes living with him so great. He notices the ridiculous and the sublime. He appreciates the beauty of living and the delicious silliness of it all.

He will be getting dressed and turn to me and become "Borg Keith." Fiction suddenly starts to feel like reality when your body starts to sprout tubes and wires. It's all serious. It's all important. And, it's all just a little bit bizarre.

Machines surround him with unseen rays bombarding his body -- targeting the evil cancer cells. Didn't this happen to Bruce Willis in 12 Monkeys? Should we just tattoo a bar code on and get it over with?

The chemo pump clicks and buzzes for a few seconds. And I thought cell phones were intrusive! I find myself afraid to hug my husband because I might jostle some piece of technology. I think back to all those days when I became exasperated with Keith and told him "it's like you are glued to the computer!" Again, fiction becomes reality. The computer really is glued to him now. Can I take it back? I want a hug. I want to snuggle in bed and watch silly television shows.

Modern medicine is very efficient, very scientific, very logical. It is also very cold. It lacks the warmth of the human heart and the breath of kindness. Cancer abstracts talk about cost effectiveness and trials and mortality and morbidity. Doctors try to be professional and detached. Studies talk about drugs and methods and formulas and protocols.

But, during all this efficient, modern treatment there needs to be something more. Something enlightening and spiritual if you will. This patient is not a patient. He is a man. A husband. A father. A grandfather. A co-worker. A nephew. A cousin. A son. He is gentle, but sometimes impatient. He procrastinates over yard work and house repairs, but will fix a computer in a flash. He will take a drive across the state on a whim and sit in the sand and build castles with his children. He will get up in the wee hours of the morning after working late at night to pick up a daughter from the airport. He will pile unopened mail on his dresser, then wonder what happened to the debit card he was waiting for. He will tell me I'm beautiful when I feel like a wreck. He will mean it, too.

Humanity cannot be forgotten in the rush to heal. Love is healing too. Caring, compassion and empathy should be the cornerstones of medicine. The will to live is powerful. It is spurred by the amount of love and support we feel from those around us.

My husband. My best friend. My lover. My companion.
Cancer does not define you. Love defines you. You are surrounded by it -- enveloped in a swirling cloud of affection. It is also a powerful a medicine in your arsenal against this disease.

Emotions

It's been hard to write the past day or so. I've found myself fighting profound saddness which seems to manifest itself as apathy. Strange to think of it as apathy, as I'm so busy I can hardly breathe -- but some things just seem overwhelming right now.

Saddness is an odd feeling since at times it is almost an absence of feeling. Fighting tears back at one moment, then wishing you could get the tears out in another moment. Feeling that all you want to do is hide and sleep -- blessed, peaceful, dreamless sleep. Curling up in bed is like a sheltering womb. But it is an illusion. The cause of all the saddness does not fade -- does not disappear.

The worst of it all is that my role in all this is to provide support and love, but the saddness robs me of the ability to tackle that role. There have been hours when exhaustion just sweeps over me, leaving me feeling irritable, and even more terrible -- closed off emotionally.

I think this depression is easing up a bit. I will try to push it back and throw it aside so that I can return to the task at hand -- Keith's life.

Random thoughts

Today was Keith's last day at work for awhile. I was touched by the outpouring of support and offers of help from his colleagues. I was not surprised, however, as Keith is a loving and supportive person and he brings those feelings out in others. I know in the days and weeks to come that those offers of help will become part of a lifeline that keeps our family moving forward.

It's so hard to even think of Keith being sick -- he seems fine on the surface. It all seems slightly unreal. The edges of life are fuzzy and blurred like a dream. We keep waiting to wake up.

I feel very proud of how he has managed the first steps of treatment. Placing tubes and objects must add to the dream-like quality of his life right now. He shows real courage and acceptance, whether he feels it or not.

Courage, it seems, is about actions, not feelings. Fear is always a part of this. But what should we do with that fear? Do we nurture it? Do we dwell on it? Do we succumb to it?
Keith has decided that it is important to face his fears and move forward as an example to his children. His strength in the face of this challenge demonstrates his values and the depth of his love for his daughters. They draw their strength from him.

One way to conquer fear, at least to some degree, is to find time for laughter. Humor is a healthy response that makes both the body and the mind feel better. Keith's writing continues to have his dry sense of humor in spite of the underlining seriousness of the situation.
Smiles help ease the underlying fear. It helps us to stay grounded in the here and now.
This morning we watched our granddaughter Liz stacking coffee creamers -- making houses and castles out of little containers. How can anyone not smile while a child discovers such tiny joys.

And, after all, life is funny at times...
We look for something for an hour only to discover it is right in front of us.
"Where are my glasses?" "On your head, silly!"
The call at night from the son who says his car won't start, he'll need to call a tow truck. (out of gas!).
Walking through the department store past lingerie and Liz yells out for all to hear "Look, grandma. Boobies."
Me mispronouncing the word "stoic" as "stoyk." (Keith found that very funny.)
Lying in bed on a Sunday morning, enjoying the quiet and then hearing several bumps and an "ow" and we both say, "Kim's up."
Me losing every mini-challenge on my new Wii game and still beating the kids -- they still can't figure that one out.
Keith calling me to "say hello" and I say "you bought ...." I'm right, of course. And he says "how do you do that?" -- we both do it actually, it just comes from being married for a long time.

I love those moments. It is when we laugh about something together that I feel most connected.

I also find myself thinking a lot about the years we've spent together -- remembering hardships and triumphs. I treasure our spontaneous trips whether they worked out or not. I treasure sharing the births of our children, even if Keith did take some pictures of me in some very embarrassing positions. I even treasure the arguments, because out of them we always gained a better understanding of each other.
Maybe we both like roller coasters so much because it reminds us of our life together. A series of ups and down, loops and turns -- thrilling, exciting, heart-pounding climbs and dives and when it stops you want to go again.

Reflections and contemplations

Went back to work teaching school today. I found that my mind was often elsewhere. It is just so hard to care about anything else right now. I want to spend my time with Keith and all else just feels as if its stealing my moments away from him.

I have hope for the future -- Keith is strong, young, healthy in every other way except the cancer. He is a good "candidate" (as the doctors say) for treatment. But, it's still all risky. Can't help but feel that every moment should belong to us, just in case.

I understood Keith completely when we were in the hospital and contemplated (for a moment or two at least) the option of just going away together -- traveling and enjoying life for as long as possible. But doing that is giving up and admitting defeat. We're not at that point. Hope is paramount -- hope is tangible -- survival is a possibilty -- it is within reach, so we will reach for it.

I hate seeing Keith have to go through all this. It is his struggle -- one that he ultimately faces alone, no matter what kind of "support" we give him. No one can really share that interior life that is uniquely our own. The voices and visions, the memories and moments, shift and change and make up our dreams and thoughts. I think of James Joyce and how he takes us into that interior life and how difficult it is to fathom, even when it is put into words for us. Each of us is connected, but yet we are ultimately alone -- each like a small universe -- isolated, but part of an infinite and overpowering whole that we don't really grasp.

Fear, love, hate, anger, joy, tenderness, despair, acceptance, affection, uncertainty, hope -- the emotions we all feel flicker from moment to moment and never settle into place. Should I still tell Keith to pick his clothes up off the floor, or take out the trash, or turn off the television? Do we continue with the mundane? Do any of these things matter? Does it matter that these things don't really matter? Don't those simple actions ground us in the here and now of our lives? Doesn't the trash still have to go out even when cancer alters our lives?

I guess I will continue with the mundane, at least just a bit. But, I also find myself looking up at the night sky, or into the sleeping face of my husband, and think -- life is a series of moments like these, precious, fleeting, and desperately sweet. The universe within and without is a magnificent mystery. By capturing those moments we also capture the meaning of life. There is no justice or fairness in life and death. There is only the mystery. There is only the truth. Love is all there is. It has to be enough.

First steps

It's so hard to know when to "be there" for someone. When to take off work, when to smile and make jokes, when to cry, when to act like everything is normal.

I'm glad I went to the hospital for Keith's first procedure -- I think it helped us both. I was able to meet the doctors and have the "port" and feeding tube explained. Laying on a hospital bed waiting for doctors and nurses to do something is unnerving if you don't have someone with you to provide some distraction.

Just someone to talk to -- that's so very important. Keith needs it, of course, but so does the entire family. We talk of big things, like cancer, but also little things like bills and shopping, errands and work.

We talk about odds -- what they mean -- what they might mean. We weigh and balance the odds of survival. The odds of treatment vs no treatment. The odds of getting better later against wellness now. Life becomes a game of craps. How ironic is that? Hasn't it always been, but we just don't usually pay attention?

This past few weeks have put love and marriage into focus. This truly is what marriage is all about -- being with someone heart and soul. It is about saying the words I Love You and meaning them with every fiber of your being. It's about finally understanding the depth of your marriage vows and that how we manage to hold on to each other through the most difficult times of our lives is what those vows were really all about.

If cancer can bring a gift along with the fear and sadness -- it is that. Love at its deepest and most meaningful. I understand now, at the very core of my heart, that the man facing this terrible challenge is not just a part of my life -- he is my life.