Wednesday, May 14, 2008

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.

Friday, February 8, 2008

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.

Sunday, January 6, 2008

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.

Saturday, January 5, 2008

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.