Wednesday, November 10, 2010

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.

Sunday, October 17, 2010

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..............

Thursday, October 7, 2010

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.

Wednesday, September 29, 2010

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.

Wednesday, May 14, 2008


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.