The drug names come at me in a blur. Single meds, combinations, cocktails all swirl around with unpronounceable names. After a while I get lost. Perhaps they should just call it eye of newt and toe of frog. I look them up and try to understand the side effects and primary effects. I research companies with cutting edge treatments and try to follow them. I try to find emails of companies who have experimental drug trials . Do we qualify? How can I find them? What is the next step? What is the nmae of that treatment center? They have to be good, they adertise on TV.

It becomes an act of desperation to try and follow everything.

I was meditating to try and find some peace and solace. It isn't happening. Slowly I sink into it and it is so very relaxing. I send out thoughts of good health and cure to her. Does she receive it? Does she know? Is it all about me disguised as all about her?

I may never know, but will she?

Dinner was great, just the two of us. We talked and laughed like we were 22 again. Inevitably the talk turned to the inevitable. Now I guess it probably isn't good to listen to Joni Mitchell while I write but there it is. The chemos are not working. We celebrated three years which we both thought would never come, Order another cappucino martini. The wizard said, I need some time to think about this when confroted with the realization that things are not working. That stopped her dead in her tracks (pun intended).

"You know I never thought I would see three years." She said.

"Neither did I" I replied.

"But here we are."

"Yes we are", I said. I played with the fork and then my wine glass.

"It makes me sad." She was getting teary.

"What makes you sad?"

"To know I won't be around. I mean it doesn't make me cry or anything but it makes me sad.
I'm not ready."

"I'm not ready either."

"You'll be okay though. We planned it well enough. I have about 300,000 in insurance and you have about 150 in insurance on me and we have our investments. You should be able to pay off the house and live off what you make. It will be all right."

"I'll miss you." I said it.

"I'll miss you too.Molly will be allright, Lilli too. Sam's okay now."

"Yep. It will be okay, I'm just not ready."

"Me either." she said.

We left it at that. It is just too tough to face except in small dooses. This dose was enough.
So we filled the remaining time talking about the abstract thinking that our children show and whether the short rib cannaloni was really a cannaloni or just a filled pancake.

Wine finished, martini done, we walked out into the night. The air stung our cheeks and her hand felt so right in mine.

No Conspiracy

"What are you doing home?" I said.

"Well the doctor said the chemo drug wasn't working so why give it to me?" She replied.

"Makes sense. So what is he going to do."

"He's looking at a couple of other ones but the office needs to get authorization which can take a week or more. I knew it wasn't working."

"So why didn't you tell him." I knew instantly I had stepped in it.

"I never get to see him and he doesn't do scans. I mean its been six weeks since I saw him so who was I going to tell?" I sensed a bit of agitation in her voice so i felt it was worth walking away. "Anyway the new one he wants to try needs to be approved by the insurance company and they are so slow. Their office doesn't move to fast either. I'm going to have to call them next week to see if they even filed the paperwork," She walked away in frustration.

That conversation is the essence of cancer treatment right there. Some things work but only for a while then you have to move to a different drug. You don't know if it will work until you are weeks into treatment. By that time the patient. No wait, by that time my wife has suffered six weeks of poisoning only to find it has not poisoned the proper thing, just everything else. Then the experimentation begins. Cancer patients are guinea pigs, plain and simple.

The experimentation is extremely frustrating to watch and worse to experience. There are regimens that work for some but not for others. There are dosages that are great for some and not for others. There seems to be no logical path to follow like a decision tree from BF Skinner. Nothing that says option A does not work so we go to option B. It seems to be in part based on the expertise and experience of the doctor which the doctor matches with the specific patient. Each new attempt and drug is costly and must be approved by the insurance company which pays for only a part of the drug. The remainder is supposed to be picked up by the secondary insurance or the patient. Now while it is against the law and ethics to deny a patient treatment because they can not afford it, a case can be made for that. I mean, we owe way more than we can pay in this lifetime. It is money driven.

That makes me think that no cure for cancer will be found. Now hear me out, I am not a conspiracy buff although I love the History Channel for that very reason. However, if there were a cure for cancer, the business of cancer would be eliminated. The money for treatment wold disappear, oncologists would largely be put out of business, radiotherapy would cease to exist, chemotherapy drugs and their manufacture wold no longer exist. The entire industry would be crippled and it is no small industry. There is a vested interest on the part of manufacturers, drug companies, oncologists and all there associates in keeping this business up and going. A cure would end that.

I'm sure it is no conspiracy but, I'm just saying, just throwing it out there..............

Big Meltdowns in Small Packages

We all seem to hold in our feelings and emotions. We keep and control them, confine and imprison them until they break free. The emotions pour out in a place and time of their choosing and once it starts we seem to lose all the precious control we have exercised for so long.

A young girl I know well lives in a nice house in a smal town. She has a sweet little room with lots of stuffed animals and shares the house with several cats, a dog and a ferret. She allows her parents and her older sister to live there free of charge. She plays with her friends and has sleepovers, takes art and plays sports. She likes school, sings in the church choir and likes to sit and read on cloudy, rainy days. She fights with her best friend who lives across the street and dies when they can't play together. She is as normal and carefree as any girl anywhere. Except for one thing her life is a breeze; her mom is sick and from tme to time has no hair.

So this little girl without any curls sits and worries away. Her stomach hurts and she sleeps fretfully and her dreams are vivid and bright. Its a wonder sometimes she can sleep at night. In the morning she worries that the bus won't arrive, she worries at school that things won't be right and she worries that other little girls won't like her but there is one worry that lives deep inside and never expresses itself. She worries about her Mom.

So it was without great surprise that recently this little girl hit a rough patch. She was in class and couldn't solve a problem so the frustration brought on a few tears, the few tears brought on crying and the crying brought on great sobs. It was then that her teacher helped her calm down a bit and they went and had a chat with another wonderful and sympathetic person who, very perceptively, asked "Is there anything going on in your home?" That is when she spilled her beans and the emotions that were long held inside for so long came out, freed from the confines of her control. It was a meltdown, a big meltdown in a small package.

Her teacher and counselors helped and her cats and the ferret helped too. The stuffed animals were a joy and dad even tried his hand but it was her mom that helped the most. Moms do that so much better than dads and cats and ferrets. Mom reassured her, made her feel safe and secure and the little girl said, very perceptively, "Mom, I think I am woried about you being sick and that's what happened."

So comfort came and the little girl felt better. Perhaps she will be able to remember that comfort the next time that well comes bubbling up. Here is to Mom, may she be around to comfort forever.

Away from Normal TIme

Things were good, yes they were. For about two years the cancer receded into the mist. We knew it was there but it progressively went away. It was amazing. After a couple of years of therapy, illness, difficulty things began to turn around. The tumors responded to treatment and grew smaller. Then one happy day following a scan, the wizard said that he could not see the cancer.

So we began to live again, slowly at first then more and more. I bought her a dog, a Great Dane which she wanted for years. We began to go out for hikes, dinners at restaurants became easier and we enjoyed life. Our daughters responded by becoming easier to live with. I laughed again and played around with the girls. I even coached my youngest daughter's softball team. It was a good time. My youngest said she wanted to do some things for vacation so we did. We went on a long hike where she nearly stepped on an eastern diamondback rattle snake. We went to Split Rock and swam in the cold spring water. We slept out under the stars one night. We went to a water park. We went to Six Flags in NJ and rode roller coasters and ate ice cream. It was a good time in our lives.

As we were riding roller coasters and eating ice cream my wife sat down. It was a hot day and the pavement just made it hotter. She looked tired but our kid schedule was fairly relentless. After all, it was designed and executed by a 10 year old.

"You all right?" I asked her.

"No, my back hurts."

"You're probably just sore from the rides and the walking." I said that to her with a bit of hope and a great deal of denial in y voice.

"No, I don't think so", she laughed and leaned forward to stretch her back.

I shrugged it off and went with our teenage daughter to get in line for the next roller coaster. While the line snaked around I would steal glances back at her. She was in pain but she kept up the conversation with our 10 year old and sent her to get sodas and laughed and listened. All the time I could see that she was in pain.

The next week, the doctor told us the tumor was growing and she would need to reenter chemo. It was tough, no doubt about it but there we were. This time we knew what to expect. We began preparing.

She bought a wig, it looks nice. It is a bit longer than her hair but not noticeably. We got out the blanket she wrapped up in while she sat with the cold poison dripping into her veins. She found the bag she carried all her things in. We packed it and set it in the closet.

First chemo was on a Friday. We went early in the day and checked in at the patient desk. We sat in the lobby with all the others and waited. I have always hated waiting in the lobby. There are all manner of people waiting there. Old and young, rich and poor, sane and not so much. All wait their turn to be called, called back to the exam rooms, called back to treatment rooms, waiting and waiting for our name to be called. Some of the people look like they are checking out, others look like they have already but others seem to be healthy, hale and hardy.

When her name is called we pick up the bag and go in. Her regular doctor is not there and the one seeing her has been a bit nasty. I sit in the exam room almost hoping he will be rude and give me a reason to beat him but this time he is polite, almost cheerful.

My wife enters the treatment room and sits across from a fellow who is young, in his thirties, and ashen gray. His wife talks constantly. He drifts in and out of sleep.

The nurses there run the show. They are everywhere and provide the most amazing care. I just marvel at them as they insert needles, hang bags, commiserate with the patients and rejoice with them. Almost everyone is a friend and they never seem to be down. I am stunned by their ability to separate themselves from what they are doing.

My wife's drug is ixempra. She has researched it and knows it's symptoms, side effects, half life, effective toxicity in and out. She leans back in the chair, all hooked up. I make certain she is comfortable, has water and her book. The blanket is folded next to her.

"Want some lunch?" I venture.

"Maybe a small sandwich, some cheese and a soda. Share some chips?"

"How about something sweet?"

"Maybe later."

The hospital is busy and I get my hall pass and head toward the cafeteria. The deli has changed since we were regulars but I adapt. I pick up the lunch and get her some ice cream as a treat and head back. It is so surreal. I get back to the lobby and it is empty. I remember that these things take as long as four hours for a treatment.

We eat and chat as she sits there all hooked up.

"You know I will probably lose my hair soon. The literature says it takes about three weeks."

I eat and nod.

After the meal I put the blanket around her. The stuff flowing in makes her cold. Sometimes she shivers as she sits there.

"Can you get me another blanket?"

"Of course."

So I tuck her in under her two blankets. She drifts off to sleep. I move her book and water bottle to the table at her free hand and leave the room to go outside. I have some calls to make. So I walk out the door into the hot sunshine, pull out my cellphone and start to cry.

Shoes

I'm sitting in a hotel lobby and the guy across from me in the lobby is on the phone. He is giving it to his wife.She overspent the budget and got a ticket. She overshot the budget and he is getting louder by the moment. He throws in a "joke" and then rips her for not being able to take the joke then goes back to how she screwed up. Now let's deconstruct this a bit. He controls things and she did something which he could not control (perhaps on purpose). Now he must berate her to make her feel bad and reassert his dominance and control over her.

I want to go over and ask him if he really means for everyone in the lobby to hear. Perhaps he does. I only know one day he will regret it. It just isn't today. We all have regrets and they become more pronounced whenever a shoe drops.

Cindy hasn't been feeling too well and I fear the sound of another shoe dropping. I fear it more than my own death and I fear that plenty.

"We're the best partners this world's ever seen together were close as can be but sometimes its hard to find time in between to tell you what you mean to me you are the rose of my heart you are the love of my life a flower not faded nor falling apart if you re tired rest you head on my arm rose of my heart." Rose of My Heart - Johnny Cash

I can see the pain in her movement and in her face and it kills me that I can't do anything about it. I would take all the pain if I could but I can't.

That brings me back to the guy who is now far too loud about the money and regrets and a shoe which I hope never drops but I see is hanging by a thread more slim than the one that held the sword of Damocles. So say a prayer for threads and shoes, threads and shoes.

January chemo

We go in to the cancer center as we have for the last eight months. The receptionist is the same, the nurses the same. Some of the people are the same. There is one tight lipped fellow who takes his treatment with military bearing, ramrod straight, reading but no sleeping and never anyone accompanying him. Tough guy.

We start with the usual blood work. This time though the needle can’t find its mark. They have to search. Cindy is wincing. I’m about to pass out. I hold her hand as much for me as for her. It just gives me the creeps and hurts to look at it so I don’t. The nurse who is excellent, can’t find a good vein so she goes for a baby needle. That really creeps me out. They stick her in her hand for God’s sake! The blood is not moving quickly and I can tell it hurts. The nurse is apologizing and I am about to lose it. Damn my hand even hurts but Cindy just winces, no tears. Finally it is over, nice bruise too. No tears though, not a one was shed.

The doctor comes in and performs his examination and we wait anxiously.

“Fantastic, you look well. the tumor is just scar tissue now. Really below 1cm from what 6cm? Are you eating well?”

“A little bit.” (Liar)

“Are you stretching? Stretching is important.” , says the doctor.

“A little bit. Every morning when I wake up.” (Fibber)

“Getting plenty of rest? How about work how many hours are you putting in?”, he inquires looking over his glasses.

“I’m back up to a full schedule.” (Whopper, up to 60 hours now)

“Well I think we are through with chemo. We have done the 8 cycles.”

“What now?”

“We need to start you on hormone therapy. We will need to see you once per month for that and to give you something to strengthen your bones. This stuff robs you of the bone mass so we need to get you back up.” he says. Then he turns and exits searching for the nurse.

That’s it? No band, no parade no nothing but we are done? How do we know? How about the other tumors? How will we be able to tell if it comes back? Can anyone answer our questions? A little help here!!!

So we exit the exam room and head into the infusion room. She has to take the meds by IV and it hurts. Now the tears start.

“I thought I wouldn’t have to do this anymore.” She cries.

“I understand but at least your hair will start to grow back.” I never know if I say the right things but this one sits on the fence for a long time before falling into fair territory.

“Yeah, at least that.”, she says and cries.

Back to School

We send Sam back. When we first sent him off there were enough tears to fill a room. This time we wait until he is checked in, eat at a restaurant in the terminal and spend a few moments. There is a lady who has a yapping little dog. Sam cringes.

“Man I just know she is on my flight and sitting next to me. What happens when the thing won’t shut up? What if she decides to let it out of it’s cage and it craps on my seat?”

The lady enters the gate to get on a flight to Israel. Sam thinks he has dodged a bullet.

We finish and walk around for a bit then it is time for us to go. JFK sits on the opposite side of Manhattan and rush hour starts soon. We have to get to the other side.

This time there are no tears. We say goodbye and leave. It is good to see him come home and good to see him leave home too.

Christmas Day

It is a great day. The kids are happy, family calls, the meal is good and life can get no better. Enough said, just enjoy it.

December Chemo

We go in for chemo. It is the usual which starts with facing the ladies behind the glass who take your name and then grab the chart, tell you to sit down. I look out around the room and it is filled with people either entering into the process, in the grip of it or coming out the other side. I saw a guy there who brought his kids. Man if that doesn’t scare them then nothing will. “Geez yes Mom I will eat those brussel sprouts. I don’t want to end up like Dad.” I bet it is more like “Did I do anything to make Dad so sick?”

Her name is called and we go to get blood drawn. If your white cell count is too low then you can’t get chemo. There is an irony there, being too sick to take treatment which is designed to nearly kill you to make you better. Anyway the blood is drawn and we are escorted to an exam room while the lab work is done. As we pass by there is a lady who is in an adjacent exam room. The door is open and I catch a part of the doctor’s lecture to her.

“You should start to lose your hair in3-4 weeks. You should probably cut it short so it isn’t such a shock. Hats are a necessity to keep your head warm.”

I remember those words. She has a little smirk on her face and her husband stands next to her and he is white as a sheet with the deer in the headlights look. He is living a nightmare and his wife is smirking at the doctor like it is a joke. Man, just wait lady and mister you better get your act together quickly. You two have no idea.

I think that guys whose wives or significant other is just beginning to walk down that road need somebody to be a guide for them, sort of an escort through hell.

The doctor says that things are really great. It is mostly scar tissue and the other tumors are probably in serious decline. That is all good news. He sets her up for chemo and a new appointment. We are a bit confused. Isn’t this the last one? What then? He has no time.

The chemo seems to take forever. Cindy is sleeping and a lady comes in and takes her place in a chair. The nurse greets her and then looks at her chart. The conversation that follows is a spirit killer.

“ Did you speak with your insurance carrier?”

“ No what’s wrong?”

“This treatment isn’t covered.”

‘What? You’re kidding.”

“No, you need to call your doctor’s office.”

The conversation continues and the lady leaves to sort things out. Now imagine if you will that you are faced with a threat and someone denies you the only alternative and solution to that threat. That is academic enough so think about this. You could die without the treatment and you can’t have it because your insurance carrier won’t pay for it and without it you need to come up with $3-5000 now. It may be fair under the rules but it is inequitable and I hope there is a particularly hot corner in hell for the insurer.

December

December

Sam came back today. It is always good to see him both coming and going. At 21 you are all about yourself and your needs. It goes without saying. It is still hard because he needs the attention.

We have one more chemo left and it comes just before Christmas. We then descend down into the tiredness and fatigue. It finally gives up its hold on her after about ten days which is just in time for the next round.

Almost all the presents are purchased and once again we have spent liberally. I don’t think it portends any hollowness or lack of spirituality. It is just a way to give to the kids. The season is not so great anyway to me. I have a long rant about Christmas that shows my general disapproval of celebrating a high point of worship by commercializing it. I think it is the end of the year that does it more than just Christmas.

It bothers my love and I am sure it rubs off on the kids. My psychiatrist says it is normal to a degree but it also is because I am coping with too many stresses – life threatening disease, reconciling with death, demands of the kids to live and live vibrantly. Perhaps he is right. Everyone around me says I need to be on antidepressants. I disagree. The key to it is not a little pill but the end of the threat or my reconciliation to it. Neither is happening any time soon.

Thanksgiving

Thanksgiving is our best holiday. There are no religious biases or commercial expectations. It is just a nice holiday for us. We have a lovely routine that we have kept for a number of years. First we get up and have a special breakfast then we watch the parades and cook dinner. We eat around 2pm or so then take in a movie, coming back in time for a dinner of left over turkey sandwiches with cream cheese and cranberries, a bit more dessert and then we waddle off to bed.

This year we have so much to be thankful for. The news from the X-ray puts us in a very hopeful mood. Last week we went to the treatment center. She had her blood drawn and then the exam before treatment began. Her doctor was back and he is in my mind, a genius. You would have to be a fool not to notice but many are fools and complain bitterly about him. He comes in with a swift flourish and looks scattered. He is usually carrying charts from his last patient and asks about his current patient while finishing his last patient. It can give the impression that he is not focused on you but that is not the case. He is thinking ahead and it evidences itself as he speaks with you.

"Let's look at your chart. You had the x-ray. How did that go?"

They said that there were no lesions just wear and it was probably arthritic pain. I don't know?"

"There it is. It looks fine to me. If it was cancerous you would have had all sorts of scarring and a mass on the bone. So, your blood count looks good. How is your attitude? It has to stay sharp and positive how is it?"

"Fine."

"Aw come on honey you have to do better than that to beat this thing. Let's see, did we give you the medication for your bone last week? Gotta keep them strong. Yes, there is is. Now let's look at you."

He begins the physical examination and pokes and probes asking her to breath n and out. At the same time he starts on some of his novel ideas.

"Did you get rid of your deodorant? It's bad for you. All you are doing is wiping chemicals on your under arm which is designed specifically to perspire. We did not start doing that until mid 20th century and breast cancer boomed among young women almost immediately following. Also are you still eating meat? Don't eat mammals, chickens and fish, lots of fish and take fish oil too. Are you still getting acupuncture? That's good but not too much of it. It will support your immune system but we don't want it to completely counteract the effects of the chemo. Now lay back."

How can it completely counteract the effects of chemo? Think about it. When people put this into you, they wear protective coverings. They don't want it to drip on them or the machinery. Now the doctor has given a quick review of his philosophy. Become more natural in your clothing and what you wear, don't pollute your system with foreign chemicals and be careful what you eat. Very sensible stuff yet we need to be told that? We have come a long way from that and paid the price.

"OK let's look at this lump. Can you find it?"

"Yes, its still there."

"Yes but it is a lot smaller than when we started. It was 6cm and now its maybe 1cm to 1.5 cm. that's pretty dramatic. How long have we been seeing you? That's right since August no?"

The exam is over and he begins another philosophical outburst.

"After we beat this thing we need to work on your weight and diet. You need to be careful what you put in your body. My wife and I have almost completely eliminated sugars and meat form cows and pigs. We also are pretty careful about the chicken and fish. Don't buy fish from polluted waters and go for the ones that have deeper colors. Cold water fish are best. Also watch the chickens as they pump the feed full of chemicals and antibiotics. Same with farm raised salmon and other fish. Go for wild caught. Are you eating enough grains? Remember 30 minutes of exercise daily." He pushes out the door and calls for the nurse. We follow as we want to ask questions about the treatment plan.

It is too late as he is off on another visit. We manage to get a few moments of his time and he tells us when we are done in February we start hormone therapy. Off we go for treatment.

So Thanksgiving is here and I am thankful, deeply thankful. I try to help Cindy but she wants to prepare things herself. So, I wash dishes and chop onions and help as much as she will allow. Fatigue sets in and her weariness shows. Her patience lags and before long she snaps at Molly and Lilli. Molly just shrugs and goes off to find the TV. Lilli stands and fights.

"Why are you yelling at me? I didn't do anything. You never listen to me and you are always criticizing me."

Cindy responds. I step in and move Lilli off. Cindy sits in the chair to collect herself and get a breath. I take Lilli into the next room. I try to be comforting and supportive but it is hard.

Finally dinner is ready and we eat our fill and set off to find a good movie. It is hard but I am thankful. Nothing like a good movie on a chilly day.

Prayer Warriors November

Some people think it is cultish, others think it hopeful and trusting. I think it is one more weapon in the arsenal and it gives me some sense of peace. I do not know if there is anything to substantiate or contradict that people for whom there are prayers respond better to treatment or not. In fact my recently departed cousin had many prayers yet succumbed to cancer quickly. I only know that it is a promise that I hold on to.

I submitted my wife's name to several groups for intercessory prayer. One group was a Catholic monastery and one a group of nuns. My son calls them a coven as in witches. I also sent her name and a prayer request to a group of "prayer warriors". These people pray for others as part of their routine and make special group prayers for people. Her name filtered back to a group that resides in my old hometown and soon I was getting emails from people I had not heard from in 30 years. I was stunned.

Another group is from way out west in Wyoming. If anyone needs prayers it is people who suffer through a Wyoming winter. This group promised to pray for my wife. Now most prayers are generally soft spoken things where people ask for something and use softer language and phrases like "love" and "His will" , as if death and suffering were all part of god's will. Not this group.

I received several prayers from people who took control and demanded and backed it with the hard language of someone in battle. No quarter was given or expected. They made perfectly clear what they wanted, why they wanted it and when they wanted it. I was stunned. I had never heard of such things. These were little old ladies and they sounded like warriors, prayer warriors. In fact, I am reprinting one prayer I received which I still find remarkable.

I am standing in agreement with you John that your wife will be delivered from all cancer in her body. It does not belong to her. It is an intruder in her body and must be evicted, in Jesus name. I stand in agreement believing that God will lift her spirit and let her see His love for her and His mighty plan for her life. I pray that all pain will leave and the cancer will die at the roots and be detached from it's source and I cancel the agenda of the enemy against your wife and your family. I ask Father, that the blood of Jesus will bathe her and take every vestige of cancer from her body. I ask that you, Holy Spirit, will speak to her heart and reveal the great love that the Father has for her. I ask that you will show her that Jesus died so that she could, not only be saved, but also be healed. Your word says in I Peter 2:24 that by His stripes we were healed, so healing belongs to her, in Jesus name. I thank you, Abba, for the opportunity to see the enemy pushed back by your presence. We call upon you to apply your mercy and grace to this family and bring healing, peace and joy in the place of sickness and pain. And we thank you that you are doing just that. I also ask, Father, that you keep your hand on these children as their Mama comes through this. Give them your peace and give John your peace that passes all understanding and to you be all the glory as you fulfill you purpose in their lives.

I will pray for you and your family every day. And I will share this need with our prayer group here. We will pray tonight, corporately, for you and your family and I believe that there will be several who will commit to pray daily until we see the manifestation come forth. My brother, you and your wife and children, are not alone.

In His love,
Sis. Jeanne

My goodness Sister Jeanne, I am still in stunned admiration of your strength and faith. I would like to have only a small portion of it, more than that would be impossible to handle.

X-ray Results November

It is one week before Thanksgiving. It is already cold and the sky looks like snow is coming. The days are noticeably shorter and the nights longer. In short it is another gloomy November day in upstate New York. My bet is that winter will arrive soon.

We are preparing for Thanksgiving which we all love. I got out the decorations and the turkey made years ago has a worn look about him. The tail feathers are in need of some glue and patching. That is a perfect job for an 8 year old girl and set Molly to doing it.

Cindy comes home and I ask the usual questions. Today she had her blood drawn to check the levels of white blood cells and her total blood count. It is an indication of how the chemo is working and whether her body is fighting the effects or allowing it to work its dark magic. She says they are good and about where they always are which tells me nothing. I ask more specific questions and then I ask the big question. "Did anyone take a look at the x-ray?" It is like pulling teeth to get any information. She believes that if I truly know what is going on it will scare and hurt me and that by not telling me she protects me. Not knowing is worse than knowing. If I can label it, give it a name and know what it is doing I feel like I can battle it, do something about it.

"Yes and they said they saw no lesions. It looks like arthritis. I don't believe them but they were the ones who read it."

Hooray! It is only degenerative arthritis! How weird is that? I am happy because my wife has a degenerative bone disease. When compared to the alternative it is wonderful in this crazy logic that now rules our household. I am ecstatic!

"Why don't you believe it?"

"I don't know it just feels like, you know."

"But this is the same group that read the first x-ray right? Why wouldn't they get it right this time? That's gotta be it, arthritis."

"I don't know it just feels different from the other times my hips used to hurt when I ran."

"Well remember the doctor gave you meds to strengthen your bones and increase the production of white cells right? Maybe its that." I won't let go of this slim bit of hopeful news. I won't let her dash it either.

"Maybe your right. It was in the last treatment. Maybe so." She lets it go and doesn't argue the point anymore.

So there you have it, a microcosm of the disease cancer. We start with pain, then add fear, unknowing, the desire to protect, anxiety, anticipation then hope again. I understand why it is difficult because if you hope too much it just sets you up for disappointment.

Xray Day November

It is x-ray day and she goes in to work. She will have the x-ray and it won't be read until a week from now. The tension is high and it will come out in small arguments and angry responses from everyone.

The pain is still there and she did not ask for pain medications. I get so furious with her about that. She doesn't take care of herself and then she is in pain and suffering. She deserves better and it teaches a bad lesson to our daughters. Still she is resolute, as if she believes she deserves the pain.

She had the x-ray and I quiz her endlessly about the results. She knows nothing but the anxiety level it produces in me is almost intolerable. Did they look at it, did the technician give any indication, did anyone freak out and offer you pain meds? This comes from the first x-ray. At that time, the radiologist was on hand and took one look at it and said, "Do you need any drugs? Whatever you want, just tell me." In short he freaked out badly. This time there is no such indication from anyone. Which means we will have to wait.

Earlier I wrote about milestones. Sometimes I think I look by the side of the road we are on looking for milestones overgrown by weeds, just something to give an indication of where we are in the process and journey. It just seems like endless routine and no real sign of progress. I don't do well on long journeys with no end in sight. It drains hope from you.

Long Haul November 2007

So it is time for the long haul. It is time for the grind. Each time Cindy gets drip chemo the cycle begins:

• Day of chemo - it is tough to sit and watch her receiving chemo. Many of the people there are on the verge of death and look like they are checking out. One young lady ran out of insurance funds to get chemo and so the staff was telling her to go to Medicaid and seek funds but they still gave her treatment. I am also one of the few people who come with the person getting treatment. I can't understand that but it is hard to sit there. Eventually she falls asleep and I place the blanket around her. The fluids are not warmed and even in a heated room she shivers.
• Day 1 following - she is tired beyond words. It takes all her effort to stay awake. That Saturday is spent sleeping off and on. I try to keep the girls occupied and out of the house.
• Day 2 following - she is still tired and rests more often than not. She also begins getting depressed. It is tough to deal with but easy to understand. If I catch on early enough then I can deal with it. Lilli does not catch on and besides, at 14 it is all about her. Age appropriate I guess. Molly becomes a vegetable at the TV and I try to clean up the house and get laundry and shopping done. Sometimes I send Molly to the neighbor's house and hope she is not a burden there.
• Day 3 following - her energy is on the upswing but the depression lingers and stays for the next several days. The kids are back in school and she gets up to go to work and makes the drive and will spend the day there. I will work and worry, calling and emailing to determine mood, energy, aches and pains.
• Day 4-7 following - this pattern of fatigue, recovering energy depression and recovery will continue until 7-10 days following the chemotherapy.

Her hip has been hurting her badly and she is out of pain killers. "Ask for some." I say. "Too much trouble," she replies, "besides I can just take 5 Advil." Now that is logic that stuns me. It is easier to take 5 Advil several times each day and complain of pain than to pick up the phone and call the doctor to get painkillers prescribed? I don't understand and so I argue with her. She assures me she will do it but really just wants me to stop. I know she won't make the call.

She has scheduled an X-ray to determine what the issue is. She thinks it is another and new cancerous spot. Her regular doctor was not in and his substitute scheduled it. I have not told the kids and will wait to hear back. We will deal with it as it comes, possibly grinding out a new treatment schedule.

The sword

The sword hangs by a thread. We received a reprieve three weeks ago. The doctors said no to radiation and surgery. We were elated. Now we see the sword and we are not elated. We are watching the thread.

The sword has some words printed on it and unless you get right under it you can not read it. The words are "because it won't matter". Let me explain.

In the normal process of things cancerous there is a primary tumor. If you are lucky enough to find it early then you can attack it and get rid of it. The result is freedom. If you catch it a bit later then you can attack it with chemo and surgery and a bit of radiation and the result is freedom. If you don't catch it in time then chemo is your shot because it has become systemic and widespread. Surgery won't get it and radiation can't cover all of the items. They don't matter because they would not work.

Chemo is like a hammer that goes after all the fast dividing cells whether they are cancerous or hair cells. It goes after them all. Surgery is designed to pick out the obvious and larger item. Radiation is a pinpoint accurate device. If the problem is widespread then you can't get it all with surgery and there are too may pinpoints.

I am watching the sword for signs of movement.

Vampires

Vampires come in all shapes and sizes. Regardless of size or shape they all suck the very lifeblood out of you. It is hard to defend against them at first or to even recognize them. As time goes on it becomes easier to see them, know who they are and defend against them.

I knew a guy who went to a funeral for a friend's son. The ex-wife was complicit in the child's death and the difference in the two could not have been greater. My friend felt compelled to sit behind the ex wife whom he knew, as no one else in the chapel would sit behind her. On the ex husband's side a full contingent of people sat in support. There was no difference in grief but only in solace. My friend sat there through the entire ceremony and Mass then paid his respects to both the mother who was alone and the father who was supported.

We had a drink later and he told me he could feel the grief and suffering and hate and it was both visceral and tangible. He experienced it as an outsider but also as an insider. He felt so bad but he couldn't let go. He was a vampire in a room full of vampires.

I spoke with a friend the other day and this guy wanted details, as many as I would provide. I fended him off because I knew he was a vampire. He wanted some vicarious experience. I figured this out quickly as he turned the first few points back to his own experience and his pain at some earlier time. I excused myself and swiftly left the room.

Another friend truly has concern and he listens and never prompts. He never speaks about his own experience but sometimes commiserates saying things like "That is a real kick in the head, man. I don't know how you guys deal with it." We don't either but the care and concern he has makes it easier.

Another vampire friend wallows in the experience. This person is an acquaintance and they want all the details and rock back and forth and moan and cry. I used to tell them details but I caught on and now I give vague statements.

I know it seems harsh but tragedy and suffering bring out the strangest things in some people. People seem to be either truly concerned or they are in denial or they are vampires. After talking to them it is easy to see them hiding there in the shadows waiting to bite.

Scurrying

I am watching a small cockroach scurrying across the tub floor in the bathroom of a fine Ramada Inn in Dallas, Texas. I see it because the wireless access doesn't work unless I sit in the doorway of the bathroom. Why, I do not know. However the creature is scurrying around, oblivious to the larger world. I want to be like that.

I love my wife so much and it isn't a foxhole conversion. I have always loved her. I just love her now with a passion and intensity that I have not had for far too long. I want to get everything from every moment. It makes facing what lies ahead a bit easier. It isn't that what lies ahead is bad but it will be rough for an undetermined amount of time.

When we go to chemotherapy I see the people around her. We quite often skew the age average down by a number of years. I also look at their faces and see how they are suffering. Many are checking out. Yet they grasp on to the chemo like they are holding on to a tiny branch of a larger limb on the tree of life. It is like they are hoping that this limb will grow into a tree and pull them out. It won't and it can't and it is sad. I have to leave. I don't want my love to suffer like these people are suffering. I can't bear the thought of her enduring so much pain ultimately for nothing but to die which leads me back to the scurrying little beast.

I want to scurry of oblivious to the larger issues at hand. I don't want to deal with the details and the pain and the decisions and all of that. Lucky little roach. Maybe I'll squash him.

A Reprieve of Sorts

In the old movies, the cop would come up to the prisoner standing behind the bars. "Its your lucky day Lefty. The governor has given you a reprieve." The prisoner, usually a James Cagney ripoff would look at him and make a cynical remark about how he would "rather die than live in this dump."

The Merriam Webster Dictionary defines it as the delay of punishment or to give relief for a time. Good old Merriam telling us it is for a time or it is a delay. That is a key element, the time period. It sort of tells you the sword of Damocles is still hanging by a thread or horse hair to be more exact. Life seems good until you look up and notice the sword hanging by the horse hair thread and like Damocles you want to return to the safer former life.

The doctor saw my love and she asked what the process was to be. "Well he said the tumor has shrunk dramatically and that I am walking without much pain. I told him I still got pain when I stood for a long time and he said he did too. So I asked him what we were going to do once the chemo stopped in a few weeks? Would we move on to surgery then radiation and hormone therapy? He said that he wanted to continue the chemo cycles until we complete eight cycles. That would be in February. He said we would probably start hormone therapy and be on it for about five years. He took surgery off the table and said we wouldn't need it."

Did you catch that? The doctor took surgery off the table, said hormone therapy for five years but did not mention radiation. Perhaps I am reading things in to it about the radiation, perhaps not. Anyway it is a reprieve of sorts. Now if we could just get rid of that sword.