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.

A Young Girl's Dream

"So dad, I had the craziest dream last night. I want you to tell me what its about." My daughter Lilli always greets me at 6am with a question, never a "Good morning daddy!" followed by a hug and a peck on the cheek. That was only on Father Knows Best or the Donna Reed Show. Mine starts with an interrogative. Coffee comes first though.

This morning I settle down in the chair with a cup of coffee. It takes a few moments after feeding the dog, letting the cats in and out and in and out to get the coffee and sit for a moment. I don't think as quickly and clearly until I have had a few moments.

"So dad, I was having this dream. There was a dragon in the basement. We couldn't see it but we knew it was there and it made the house hot and uncomfortable. Every time it breathed its fire on us we could feel it but we couldn't really see it. So the downstairs was getting hotter and hotter and we could feel its breath so I like grabbed Molly and we went upstairs cause the house was on fire. We went into you guys' room and Sam went into your closet and kicked the window out. He went out the window and was like in the front yard and he kept calling up to us to jump and wanted Molly to climb out but she couldn't and then the fire kinda went out and I like woke up. Can you tell me what that's all about?"

Sometimes I'm lucky and get a softball like this. Most times I don't and have to ask about what's going on in their personal life. This one is easy. I took another sip of coffee and she asked about it again. I waited and then began.

" So what do you think it is about Lilli?"

"I don't know?"

"What dragon is in our life right now dear?"

"Mom's cancer?"

"Very good. The dragon is mom's cancer and when it breathes its fire like when she is sick, we all feel it. It burns us and we retreat. It is funny that we retreated in to our bedroom though. Sam found a way out by going to Oxford and you two could not get out because you have to live here even though he wants you to be able to get away."

"Why did he want Molly?"

"She is the youngest and he worries about her more than he worries about you. He knows you have friends and spend the night at their hose and you have other things going on. Molly doesn't, she is just a little kid."

"Oh okay. Gotta take a shower now." And off she danced.

She has very vivid dreams and she is having them more and more often. I wish she were not but there you go, there you go.

Ordinary Time

Ordinary time is the time in the Christian calendar when it is not Christmas, Advent, Epiphany or any other celebration time. It is a time when things are ... well... ordinary. We are in that time right now.

The chemo is officially half over. It ends in late November. The lump in the breast is very much smaller and the ones in the spine are little trouble now. We look forward with some bit of hope. However we know that chemo is followed by hormone therapy which is followed by surgery which is followed by radiation. It is still quite frightening.

I guess we should be happy and thankful for the peace and calm. However we are coming in to cold and flu season. I guess one can find anxiety in almost every situation. We did that last week and it was yet one more time when the floor fell completely out of from under us and me in particular.

My love was reading a web site related to breast cancer. It has become her habit to troll the sites. She was looking and stopped then said, "Says her that the survival rate for people as advanced as me is 16% in 24 months." The floor opened up and I fell through it. I hate that feeling. It is completely without any sense of control and besides overwhelming it is full of despair.

I know there are caveats to that rate. First, it depends on the age of the person. It depends on the access to medical care that they have. It depends on how good the medical care is and whether they avail themselves of it. It depends on whether they have the will to live. It depends on the education level of the person. It depends, it depends, it depends. I am bone tired of it depends and I want some certainty. I don't want the certainty she will die but some certainty that she will live. I was beyond depressed for days.

I know that she has the best, the will to live and will avail herself of every opportunity to do what is right. The bets are on her side of the ledger. Still I want some certainty and I want the floor.