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.
Thursday, November 15, 2007
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.
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.
Wednesday, November 7, 2007
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.
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.
Thursday, October 25, 2007
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.
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.
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.
Thursday, October 18, 2007
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.
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.
Sunday, October 7, 2007
16% 40% 90%
We are at the midpoint of the chemotherapy there are 18 weeks and we are at week 9. During the initial phase the tumor shrank rapidly and the doctor was elated. He pronounced at one point that things were going so well that my wife had a 90% chance of remission. How I held on to those words and still do.
Lately the tumor has stopped shrinking. Granted it is much smaller but it is not getting smaller in perceptible ways. At least not in the dramatic fashion. That worries me.
My love was sitting on the couch and looking at web sites about breast cancer. The sites give odds just like Vegas. One says a 16% chance of survival 24 months after the completion of therapy another 40% others much less. That worries me.
We have slipped into a normalcy that includes a constant cough and low energy. We think it normal to keep our daughter from being with people who have a cough or cold. We avoid crowds. We have enough hand sanitizer to keep us sanitized for months. We are at war. That worries me.
Lately the tumor has stopped shrinking. Granted it is much smaller but it is not getting smaller in perceptible ways. At least not in the dramatic fashion. That worries me.
My love was sitting on the couch and looking at web sites about breast cancer. The sites give odds just like Vegas. One says a 16% chance of survival 24 months after the completion of therapy another 40% others much less. That worries me.
We have slipped into a normalcy that includes a constant cough and low energy. We think it normal to keep our daughter from being with people who have a cough or cold. We avoid crowds. We have enough hand sanitizer to keep us sanitized for months. We are at war. That worries me.
Sunday, September 23, 2007
Normal
When I was a kid I went to church Sunday at about 8:30 in the morning, we had Sunday school followed by church. We went to lunch with other families from the church, went home and changed and were back at church for youth fellowship at about 3pm and came home around 9pm. We went to church Wednesday night as well and sometimes on Thursdays for prayer meeting. I thought it was normal. A friend of mine grew up in Brooklyn and shared his apartment with 6 other people. He slept on the sofa in the living room. He thought it was normal. I also knew a guy who went to summer camp all summer long, literally all summer long from the time he was 10 until he was 17. He thought that was normal. In short, we think things are normal which other people think are strange. I don't know any other kid who went to church three or four times each week, slept on the couch as their bed or was shipped off for eight weeks each year yet each of us thought it normal. We can accept as normal many odd things.
We are in the second cycle of chemotherapy. A writer asked me why I use we when my wife is the one taking chemo. I told him/her that my wife has the tumor but our whole family has cancer. It is true. Anyway, that is a digression.We now think it is normal to go through cycles of nausea and wellness, loss of energy and times when we can walk two blocks, fear over death and euphoria that she is getting better. It is normal.
Another normal thing is knowledge that she will never be cured, only better and worse and better. That is hard for her to process and accept as it is for all of us. People try to help by acting in abnormal ways. An example is that the people at work make decisions for her and do not include or even tell her. They think they are helping. Oddly, by engaging in decision making ad the setting of directions she feels better. Why because that is a normal part of her day and life. To not do that is abnormal.
So we have settled in to a normal routine. Mom can't do the things that she used to do, dad does them badly. Mom is ill all the time so we have to plan ahead. Tensions are high and periodically we all just sort of break apart.
I pray for the abnormality of more normal times.
We are in the second cycle of chemotherapy. A writer asked me why I use we when my wife is the one taking chemo. I told him/her that my wife has the tumor but our whole family has cancer. It is true. Anyway, that is a digression.We now think it is normal to go through cycles of nausea and wellness, loss of energy and times when we can walk two blocks, fear over death and euphoria that she is getting better. It is normal.
Another normal thing is knowledge that she will never be cured, only better and worse and better. That is hard for her to process and accept as it is for all of us. People try to help by acting in abnormal ways. An example is that the people at work make decisions for her and do not include or even tell her. They think they are helping. Oddly, by engaging in decision making ad the setting of directions she feels better. Why because that is a normal part of her day and life. To not do that is abnormal.
So we have settled in to a normal routine. Mom can't do the things that she used to do, dad does them badly. Mom is ill all the time so we have to plan ahead. Tensions are high and periodically we all just sort of break apart.
I pray for the abnormality of more normal times.
Monday, September 10, 2007
Joy and Sadness in One Breath
Among the things I detest about this disease is that it takes away with one hand what it gives you with the other. There are moments of pure joy followed closely by a tension and sadness. You move between dancing and throwing up.
We received news that made me and an 80 year old woman shout for joy and praise G_d for a pure blessing and answer to prayer (yes, I still believe). I was up in my office working on a nasty client whom I loathe. The phone rings and I recognize the number.
"Hey." I said.
"I have some news you will like."
"What's that?"
"I just came back from my appointment. They drew my blood and I looked at the numbers. They are down but not bad."
"That's great!" I said because the low white count means the stuff is working and not just robbing her of her hair.
"That's not all. Doctor A came over and ordered the PICC line taken out of my arm."
"Excellent." Except that if they need to do chemo or any other thing, they now have to poke her.
"He said, 'I never ordered that, who authorized it?' So he told them to take it out."
"Very good."
"Then he did a breast exam and told me that he had to search for the breast tumor. He then said it has shrunk drastically. He said before he could feel it right off but this time he had to search around for it and when he felt it, it was alot smaller."
"ALLLRIGGHHHTT!!!!"
"That's not all. He said that I now stand a 90% chance of it going into remission because it has responded so well."
I screamed and began to cry. I couldn't help it. I was as blown away as the moment I heard she had cancer but in a different direction.
I ran down the stairs from my office two at a time to greet her and hugged her like I would never let go. I showered her with kisses and noticed my teenage daughter was crying too. It was the best news we have had so far. I whooped and jumped and acted like teenager at a football game. Let the neighbors guess at the reason.
I emailed my sister and called my mother and told them both. My sister responded within minutes or seconds I don't really remember and shared every bit of joy. My mother, bless her, shouted for pure joy and as loudly as an 80 year old can shout.
I will take 9/10 as a bet any day and will live with 90%.
Two days later, I found out that my cousin is in the last stages of his life. It seems after returning from vacation he felt bad and sore in his back. After tests they determined he has cancer of the everything with more popping up all the time. He needed one more year to retire, get his pension and benefits for his wife. His kids are grown and with lives of their own but it is so hard nonetheless.
I had a friend who responded to the statement "Life is unfair." His response was "Fairness deals with conforming to standardized rules with no deception or self interest and to that point life is not fair as we all have self interest." "Worse," he said "is that it is not equitable as there is no sense of justice dictated by reason." All I know is that it is joy and sadness in one breath. I'm going to go throw up.
We received news that made me and an 80 year old woman shout for joy and praise G_d for a pure blessing and answer to prayer (yes, I still believe). I was up in my office working on a nasty client whom I loathe. The phone rings and I recognize the number.
"Hey." I said.
"I have some news you will like."
"What's that?"
"I just came back from my appointment. They drew my blood and I looked at the numbers. They are down but not bad."
"That's great!" I said because the low white count means the stuff is working and not just robbing her of her hair.
"That's not all. Doctor A came over and ordered the PICC line taken out of my arm."
"Excellent." Except that if they need to do chemo or any other thing, they now have to poke her.
"He said, 'I never ordered that, who authorized it?' So he told them to take it out."
"Very good."
"Then he did a breast exam and told me that he had to search for the breast tumor. He then said it has shrunk drastically. He said before he could feel it right off but this time he had to search around for it and when he felt it, it was alot smaller."
"ALLLRIGGHHHTT!!!!"
"That's not all. He said that I now stand a 90% chance of it going into remission because it has responded so well."
I screamed and began to cry. I couldn't help it. I was as blown away as the moment I heard she had cancer but in a different direction.
I ran down the stairs from my office two at a time to greet her and hugged her like I would never let go. I showered her with kisses and noticed my teenage daughter was crying too. It was the best news we have had so far. I whooped and jumped and acted like teenager at a football game. Let the neighbors guess at the reason.
I emailed my sister and called my mother and told them both. My sister responded within minutes or seconds I don't really remember and shared every bit of joy. My mother, bless her, shouted for pure joy and as loudly as an 80 year old can shout.
I will take 9/10 as a bet any day and will live with 90%.
Two days later, I found out that my cousin is in the last stages of his life. It seems after returning from vacation he felt bad and sore in his back. After tests they determined he has cancer of the everything with more popping up all the time. He needed one more year to retire, get his pension and benefits for his wife. His kids are grown and with lives of their own but it is so hard nonetheless.
I had a friend who responded to the statement "Life is unfair." His response was "Fairness deals with conforming to standardized rules with no deception or self interest and to that point life is not fair as we all have self interest." "Worse," he said "is that it is not equitable as there is no sense of justice dictated by reason." All I know is that it is joy and sadness in one breath. I'm going to go throw up.
Alternative treatment Part 2
She went to the accupuncturist recently and received her treatments, both Wednesday and Friday. The treatments had no imediate effect but her oncologist said that it is great because it will assist her in her immune response.
So we will continue and see where it leads.
So we will continue and see where it leads.
Sunday, September 9, 2007
MIlestones
mile·stone
(mlstn)
n.
1. A stone marker set up on a roadside to indicate the distance in miles from a given point.
2. An important event, as in a person's career, the history of a nation, or the advancement of knowledge in a field; a turning point.
The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2003. Published by Houghton Mifflin Company. All rights reserved.
d. On a bike trip on a stretch of desert long since forgotten in New Mexico history, a friend of mine pointed out to me a stone that was buried in the sand. He told me it was a milestone and that it had been part of the old road between Albuquerque and Santa Fe. He told me that when he was a kid his dad would show him several that still had what he was told were measures written in Spanish but that now they were worn off. We looked at the stone and dug around it and poured water on it to see if we could discern writing of any type. There was nothing I could see.
We now live by milestones and divine the signs for any indication of good or bad. First it was the nausea. that is a good bad thing as it shows the chemo is taking effect. Inability to keep food down, another good bad thing. Weakness was a bother but it was a good bad thing. Hot flashes and menopausal symptoms coupled with mood swings and depression (who wouldn't be) are good bad things. The deep vein thrombosis and risk of stroke though are bad bad things.
So it was with great pleasure that her pain was reduced and she was able to walk upright again. I was very pleased and when she lost her hair we knew it was working. I just can't wait until she throws up again!
"Oh Jesus I am so sorry."
"Its okay sweetheart, let me get a towel."
"Oh no I can't make it to the bathroom."
"Here let me help you over the mess."
Five minutes later.
"Are you finished?"
"I think so. I'm going up to bed. Is the trash can next to the bed."
"Yes, I cleaned it up and placed it there. I'll clean up and be right up."
Oddly we have learned how to eat dinner with the sounds of mommy retching in the background. It is odd because these things would cause great concern in normal folks in normal times. Right now we are neither and we may never be normal again. You see her disease is incurable. That is right, INCURABLE which is incapable of being healed and made well again. We can not go back to a before it was ever around condition. It will simply never be that way. So we look for signs that is getting better and we hope that it will be better enough that we can live together for a long and healthy time.
I had a dream the other night that I was back on the high desert plain and I was looking out over the sage and cactus. I was searching for a milestone or even a road to lead me out of there. There was nothing I could see.
(mlstn)
n.
1. A stone marker set up on a roadside to indicate the distance in miles from a given point.
2. An important event, as in a person's career, the history of a nation, or the advancement of knowledge in a field; a turning point.
The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2003. Published by Houghton Mifflin Company. All rights reserved.
d. On a bike trip on a stretch of desert long since forgotten in New Mexico history, a friend of mine pointed out to me a stone that was buried in the sand. He told me it was a milestone and that it had been part of the old road between Albuquerque and Santa Fe. He told me that when he was a kid his dad would show him several that still had what he was told were measures written in Spanish but that now they were worn off. We looked at the stone and dug around it and poured water on it to see if we could discern writing of any type. There was nothing I could see.
We now live by milestones and divine the signs for any indication of good or bad. First it was the nausea. that is a good bad thing as it shows the chemo is taking effect. Inability to keep food down, another good bad thing. Weakness was a bother but it was a good bad thing. Hot flashes and menopausal symptoms coupled with mood swings and depression (who wouldn't be) are good bad things. The deep vein thrombosis and risk of stroke though are bad bad things.
So it was with great pleasure that her pain was reduced and she was able to walk upright again. I was very pleased and when she lost her hair we knew it was working. I just can't wait until she throws up again!
"Oh Jesus I am so sorry."
"Its okay sweetheart, let me get a towel."
"Oh no I can't make it to the bathroom."
"Here let me help you over the mess."
Five minutes later.
"Are you finished?"
"I think so. I'm going up to bed. Is the trash can next to the bed."
"Yes, I cleaned it up and placed it there. I'll clean up and be right up."
Oddly we have learned how to eat dinner with the sounds of mommy retching in the background. It is odd because these things would cause great concern in normal folks in normal times. Right now we are neither and we may never be normal again. You see her disease is incurable. That is right, INCURABLE which is incapable of being healed and made well again. We can not go back to a before it was ever around condition. It will simply never be that way. So we look for signs that is getting better and we hope that it will be better enough that we can live together for a long and healthy time.
I had a dream the other night that I was back on the high desert plain and I was looking out over the sage and cactus. I was searching for a milestone or even a road to lead me out of there. There was nothing I could see.
Monday, September 3, 2007
Alternative Treatment
We have found an accupuncturist that trained at Memorial Sloan Kettering Cancer hospital in NYC. He is not a flavor of the month "healer" that decided to give up his job as a fry cook to become an accupuncturist and crystal healer. We used to call them sage monkeys and crystal hippies.
The decision was due to a few articles that said that in addition to traditional treatment certain alternative treatments have shown promise. We shall see.
The decision was due to a few articles that said that in addition to traditional treatment certain alternative treatments have shown promise. We shall see.
Old Yeller
I find that our family "disagreements" now tend to boil over and become very complex. Tonight is a perfect example. My 14 year old is insistent. She gets a note from school about supplies. They will hand them out on Wednesday for the "A" class schedule and on Thursday for the "B" class schedule.
It is her considered opinion that she must get her Wednesday things Wednesday and must get her Thursday things Thursday. You can not get both Thursday. To do so would cause a ripple at the least and a tear at worst in the fabric of time. If the space time continuum is destroyed then we all will die and that will occur if we do not go on both Wednesday and Thursday. There is no other option and to even consider it is unthinkable.
So, we have a problem. I am on a business trip Wednesday and not back until late. My wife can not drive as she is very weak and her brother does not return until late. So we have a problem. We have an immovable object and an unstoppable force.
Normally there would be a solution and some negotiation and compromise as we get to the point. However tonight there was no compromise. Wait, this is a 14 year old, there is never a compromise.
When you are accustomed to doing things and that is suddenly taken away from you you feel helpless and worthless, to some degree diminished. The cancer and its treatment have a cumulative effect and weakness has set in. She is tired and grows weary very quickly. Walking down the block and back is a chore, going to the store is an effort that results in over exertion and illness. Driving 30 minutes to go to a Target and back again is an almost Herculean feat for her and it results in a daylong recuperation. It is effort that a year ago was no more than a little outing with the girls.
The argument that ensued pitted a 14 year old's insistence against the weakness and it resulted in my love crying that she could not even take care of her children any longer and was useless and tired. I tried to reason with the 14 year old and it went no where. Then I blew up and yelled at her loudly enough that people in Lebanon surely heard. Her 21 year old brother rushed to her defense. I told him to stay out. My 14 year old cried and my 21 year old argued and I yelled.
We stopped and took account of the damage that was done. Even after apologies are issued the damage is done and cancer has hurt yet another person. I hate the disease and all it has done to us, every one of us.
It is her considered opinion that she must get her Wednesday things Wednesday and must get her Thursday things Thursday. You can not get both Thursday. To do so would cause a ripple at the least and a tear at worst in the fabric of time. If the space time continuum is destroyed then we all will die and that will occur if we do not go on both Wednesday and Thursday. There is no other option and to even consider it is unthinkable.
So, we have a problem. I am on a business trip Wednesday and not back until late. My wife can not drive as she is very weak and her brother does not return until late. So we have a problem. We have an immovable object and an unstoppable force.
Normally there would be a solution and some negotiation and compromise as we get to the point. However tonight there was no compromise. Wait, this is a 14 year old, there is never a compromise.
When you are accustomed to doing things and that is suddenly taken away from you you feel helpless and worthless, to some degree diminished. The cancer and its treatment have a cumulative effect and weakness has set in. She is tired and grows weary very quickly. Walking down the block and back is a chore, going to the store is an effort that results in over exertion and illness. Driving 30 minutes to go to a Target and back again is an almost Herculean feat for her and it results in a daylong recuperation. It is effort that a year ago was no more than a little outing with the girls.
The argument that ensued pitted a 14 year old's insistence against the weakness and it resulted in my love crying that she could not even take care of her children any longer and was useless and tired. I tried to reason with the 14 year old and it went no where. Then I blew up and yelled at her loudly enough that people in Lebanon surely heard. Her 21 year old brother rushed to her defense. I told him to stay out. My 14 year old cried and my 21 year old argued and I yelled.
We stopped and took account of the damage that was done. Even after apologies are issued the damage is done and cancer has hurt yet another person. I hate the disease and all it has done to us, every one of us.
Self Medication
9/3 I have been self medicating. I admit it. "Hi my name is X and I self medicate." It numbs the pain and fear and anxiety. I am anxious all the time. I am scared to death. I am also very depressed and no amount of sunlight will cure it or defer it. I think that by controlling the environment that I can make life easier and better for her so she will get rest and be able to fight this devil. In some respects that is true but it takes its toll. So, I self medicate.
My medication is two fold. I run. I run from things. I run for things. I run to save my life and sanity. I run 20-25 miles/week, not much by many standards but I am a 50 year old under duress. It goes like this: things pile up and I can't take it so I plan to get my gear and run but something comes up and I can't. So I put it off for a bit then my morning run becomes an afternoon or early evening run. I take off and do a mile on flat terrain. I think about how lucky I am to have great kids and a great wife and a great life. Then I pray. Then I think about all the things that happened and that are coming up and I get keyed up.
Drop the shoulders, lengthen the stride, even out the pace. Breathe and relax.
I turn and face the hill. It goes up for 1/2 mile. I put effort into it and my legs burn; it is catharsis. I power up thinking about how goddamn angry I am and how all this is just so unjust, and fucked up and she doesn't deserve it and I don't' and....
Drop the shoulders slow the pace, you have 30 minutes left.
I hit the first plateau and my mind clears a bit as my body reminds it that I am indeed 50 years old. I breathe and catch my breath better, realize my foot hurts and stride a bit.
Second hill comes and I charge it almost in tears. It hurts and I think that if I can just burn through this I will burn through my anger and feel better. I lean into the hill and work through the intersections as cars pass and people stare at this rhino charging up the hill.
I hit the top and turn right and cruise up a small hill and on to a flat. I get to the intersection and cross along the flat terrain. I am calm and peaceful but my breath is a bit labored. I slow my pace, drop my shoulders and relax my jaw. Sweat is pouring off my forehead and into my eyes.
I start down a hill and it hurts more than going up. I feel like the scarecrow in Wizard of Oz. I run past the college and the coeds. Most don't even notice me and I like the anonymity. It feels good. I notice some kids at the park and I relax, the endorphins kick in at 5 miles. I head up a hill that is just enough to make me lean in to it and I run through the little bit of pain. Turning right I complete my big square and try to run the last 1/2 mile. I finish my 6 miles out of breath and legs shaking. My mind is clear and I know what I need to accomplish and how to get it done.
I also have been drinking more than I should. I have a beer every other night or so and I finished a bottle of a decent Australian dry white from Marlborough in two days. It deadens the impulse and lifts my mood. It also screws up my sleep making me more tired and irritable the next day.
I realize I do not need liquid depressants and I should get on anti depressants to take the edge off and make things more manageable. I just don't like the idea of sacrificing the highs for the sake of diminishing the lows. I need the highs at this time in my life.
Maybe I will up my distance to 30 miles.............
My medication is two fold. I run. I run from things. I run for things. I run to save my life and sanity. I run 20-25 miles/week, not much by many standards but I am a 50 year old under duress. It goes like this: things pile up and I can't take it so I plan to get my gear and run but something comes up and I can't. So I put it off for a bit then my morning run becomes an afternoon or early evening run. I take off and do a mile on flat terrain. I think about how lucky I am to have great kids and a great wife and a great life. Then I pray. Then I think about all the things that happened and that are coming up and I get keyed up.
Drop the shoulders, lengthen the stride, even out the pace. Breathe and relax.
I turn and face the hill. It goes up for 1/2 mile. I put effort into it and my legs burn; it is catharsis. I power up thinking about how goddamn angry I am and how all this is just so unjust, and fucked up and she doesn't deserve it and I don't' and....
Drop the shoulders slow the pace, you have 30 minutes left.
I hit the first plateau and my mind clears a bit as my body reminds it that I am indeed 50 years old. I breathe and catch my breath better, realize my foot hurts and stride a bit.
Second hill comes and I charge it almost in tears. It hurts and I think that if I can just burn through this I will burn through my anger and feel better. I lean into the hill and work through the intersections as cars pass and people stare at this rhino charging up the hill.
I hit the top and turn right and cruise up a small hill and on to a flat. I get to the intersection and cross along the flat terrain. I am calm and peaceful but my breath is a bit labored. I slow my pace, drop my shoulders and relax my jaw. Sweat is pouring off my forehead and into my eyes.
I start down a hill and it hurts more than going up. I feel like the scarecrow in Wizard of Oz. I run past the college and the coeds. Most don't even notice me and I like the anonymity. It feels good. I notice some kids at the park and I relax, the endorphins kick in at 5 miles. I head up a hill that is just enough to make me lean in to it and I run through the little bit of pain. Turning right I complete my big square and try to run the last 1/2 mile. I finish my 6 miles out of breath and legs shaking. My mind is clear and I know what I need to accomplish and how to get it done.
I also have been drinking more than I should. I have a beer every other night or so and I finished a bottle of a decent Australian dry white from Marlborough in two days. It deadens the impulse and lifts my mood. It also screws up my sleep making me more tired and irritable the next day.
I realize I do not need liquid depressants and I should get on anti depressants to take the edge off and make things more manageable. I just don't like the idea of sacrificing the highs for the sake of diminishing the lows. I need the highs at this time in my life.
Maybe I will up my distance to 30 miles.............
How People Stop and Stare
This weekend we went out for breakfast. Now mind you that our little town of NP has more than its share of people to look at. Some days I think we are in competition for the greatest number of tattoo parlors/capita and most citizens of a town with a tattoo. One guy has his face tattooed (that had to hurt), a young woman has both arms and legs (and I am certain it does not stop there) tattooed. I think Iam the only one without a tattoo.
My love has a Power-Pic-Line in her arm that travels up the vein in her arm so they can deliver things and remove things from her body without poking her again and again. It is very convenient and a good thing but she has these two lines exiting her arm. It gives me the creeps to look at it. However I have adjusted.
We were heading to our favorite breakfast place and I began to notice people staring. Perhaps it was the near hairlessness, the cap, the pained walk, the pale skin or the Power-Pic-Line. I don't know but it made me wonder if I had given such looks to other people and if it bothered them or made them as self conscious as it made us.
The reactions seemed to range from slight horror to pity to amazement. I kept expecting mothers to grab their small children and hustle them inside. I also expected the tattooed to not look. I mean these folks have let someone draw on them and not necessarily very good drawings done very well. However, they looked at her like she was the freak! So much for tolerance and kindred spirit. So much for the community of the outcast.
So I did the only thing I could, I would slowly pull up the sunglasses and give them a stare back, locking their gaze and following them. A friend once said I had the stare of someone in a witness protection program, hard mean and intimidating to average citizens. I used it and it worked. I don't feel bad about it but it caused some conflict in me. I can guarantee you I will never stare at the guys on the bus out for a day away from the group home or someone who has a disability or a homeless person. It just isn't right and makes you feel like there is something not just wrong but deficient about you. I hate those sort of Epiphany's.
My love has a Power-Pic-Line in her arm that travels up the vein in her arm so they can deliver things and remove things from her body without poking her again and again. It is very convenient and a good thing but she has these two lines exiting her arm. It gives me the creeps to look at it. However I have adjusted.
We were heading to our favorite breakfast place and I began to notice people staring. Perhaps it was the near hairlessness, the cap, the pained walk, the pale skin or the Power-Pic-Line. I don't know but it made me wonder if I had given such looks to other people and if it bothered them or made them as self conscious as it made us.
The reactions seemed to range from slight horror to pity to amazement. I kept expecting mothers to grab their small children and hustle them inside. I also expected the tattooed to not look. I mean these folks have let someone draw on them and not necessarily very good drawings done very well. However, they looked at her like she was the freak! So much for tolerance and kindred spirit. So much for the community of the outcast.
So I did the only thing I could, I would slowly pull up the sunglasses and give them a stare back, locking their gaze and following them. A friend once said I had the stare of someone in a witness protection program, hard mean and intimidating to average citizens. I used it and it worked. I don't feel bad about it but it caused some conflict in me. I can guarantee you I will never stare at the guys on the bus out for a day away from the group home or someone who has a disability or a homeless person. It just isn't right and makes you feel like there is something not just wrong but deficient about you. I hate those sort of Epiphany's.
Hair Today Gone Tomorrow
9/01/07
"Okay, in right at 2-3 weeks you will start to lose your hair.", said the nurse. "Lots of women cut their hair really short just so it won't be so dramatic. Your hair will come back when you finish chemo and sometimes it comes back just like before and in some cases it comes back curly. You just never know."
We began chemo August 1. By August 14 there was no real hair loss then in the third week, it came out. She had cut it into a very feminine hairdo and it looked cute. I admit it, it looked cute. Then it came out in combs, in the shower and on the pillow. More was present on the towel and on her shirts.
It is amazing the difference our hair makes in our perception of ourselves. She cried and cried and tried to put it aside. We got hats, caps and berets. We got scarves and hoodies and more caps. No matter it was the same.
I love her dearly and have come to grips with the hair loss but it is still so hard for her to get used to it. At one point in her life she had hair that came down to the middle of her back and swung as she danced and ran ahead of me on the track. I loved that hair.
"Okay, in right at 2-3 weeks you will start to lose your hair.", said the nurse. "Lots of women cut their hair really short just so it won't be so dramatic. Your hair will come back when you finish chemo and sometimes it comes back just like before and in some cases it comes back curly. You just never know."
We began chemo August 1. By August 14 there was no real hair loss then in the third week, it came out. She had cut it into a very feminine hairdo and it looked cute. I admit it, it looked cute. Then it came out in combs, in the shower and on the pillow. More was present on the towel and on her shirts.
It is amazing the difference our hair makes in our perception of ourselves. She cried and cried and tried to put it aside. We got hats, caps and berets. We got scarves and hoodies and more caps. No matter it was the same.
I love her dearly and have come to grips with the hair loss but it is still so hard for her to get used to it. At one point in her life she had hair that came down to the middle of her back and swung as she danced and ran ahead of me on the track. I loved that hair.
Monday, August 27, 2007
Superwoman
As a complement to the man of steel, Supergirl was his equal. She could leap tall buildings, stop a locomotive and all the good stuff. People are not quite like that.
Feeling a bit better, she decided to try a bit of work. It is good for the psyche and adds purpose to a life, right? So off she went for a bit of work. Monday was good with a three hour stint. Everyone was glad to see her and she had a number of well wishers. It was good for the soul.
Tuesday, still feeling fine she went off for the next round promptly at 8:00. I called around noon. I got voice mail. Finally around 12:30 I get a call.
"Are you alright?"
"I'm fine. I feel good and its okay."
"You sure? You wouldn't lie to me about this? You still need to take it easy."
"I'm fine, come and get me around 2:00."
Two o'clock came and I picked her up. She was fine but tired and that night she slept like a log. Wednesday she stretched it and Thursday the same. I was not happy but it is her decision. She is not my "patient" and I am not her "nurse". I do however have to deal with her decisions.
Wednesday night our son decided to get drunk, not just a few beers but snot slinging drunk. Drooling drunk, rubber legs and I can't walk drunk. Coming home from the bar he fell down the stairs and was loudly raving. I was up, he was down, his mother was up and worried. Sleep was denied. Finally after a long battle with a drunk and weepy moose calm returned. A few hours later we were up. Thursday, work started late for everyone but work she did. Chemo round two loomed Friday. Picking her up Thursday she looked tired and worn. A meeting dragged on for 3 hours! I had a boss who would hold meetings in a room with no chairs and no A/C everyone was given 15 minutes to state their case and the entire agenda was completed in less than 2 hours for a large hotel staff.
Friday came and chemo starts at 12:30. Work began at 9:00. I promised to be there at 12:30 and I was. She was sitting in the easy chair recliner and looked weak and drained and nauseous. I found out that she had thrown up on Thursday and did not tell me and had thrown up today. Her staff took her down to the infusion center and they were administering fluids and electrolytes to get her up to the point they could perform chemo. I was a bit upset.
"Look superwoman, you have to slow down."
"I know."
"You can't work at the same pace as before."
"I know, I know." (Obviously trying to blow me off.)
"It doesn't do anyone any good if you are here sick and unable to work. You can't even get treatment! What do you think you are doing?"
"I'm going to sleep now."
Chemo normally lasts two hours. Friday took five.
Feeling a bit better, she decided to try a bit of work. It is good for the psyche and adds purpose to a life, right? So off she went for a bit of work. Monday was good with a three hour stint. Everyone was glad to see her and she had a number of well wishers. It was good for the soul.
Tuesday, still feeling fine she went off for the next round promptly at 8:00. I called around noon. I got voice mail. Finally around 12:30 I get a call.
"Are you alright?"
"I'm fine. I feel good and its okay."
"You sure? You wouldn't lie to me about this? You still need to take it easy."
"I'm fine, come and get me around 2:00."
Two o'clock came and I picked her up. She was fine but tired and that night she slept like a log. Wednesday she stretched it and Thursday the same. I was not happy but it is her decision. She is not my "patient" and I am not her "nurse". I do however have to deal with her decisions.
Wednesday night our son decided to get drunk, not just a few beers but snot slinging drunk. Drooling drunk, rubber legs and I can't walk drunk. Coming home from the bar he fell down the stairs and was loudly raving. I was up, he was down, his mother was up and worried. Sleep was denied. Finally after a long battle with a drunk and weepy moose calm returned. A few hours later we were up. Thursday, work started late for everyone but work she did. Chemo round two loomed Friday. Picking her up Thursday she looked tired and worn. A meeting dragged on for 3 hours! I had a boss who would hold meetings in a room with no chairs and no A/C everyone was given 15 minutes to state their case and the entire agenda was completed in less than 2 hours for a large hotel staff.
Friday came and chemo starts at 12:30. Work began at 9:00. I promised to be there at 12:30 and I was. She was sitting in the easy chair recliner and looked weak and drained and nauseous. I found out that she had thrown up on Thursday and did not tell me and had thrown up today. Her staff took her down to the infusion center and they were administering fluids and electrolytes to get her up to the point they could perform chemo. I was a bit upset.
"Look superwoman, you have to slow down."
"I know."
"You can't work at the same pace as before."
"I know, I know." (Obviously trying to blow me off.)
"It doesn't do anyone any good if you are here sick and unable to work. You can't even get treatment! What do you think you are doing?"
"I'm going to sleep now."
Chemo normally lasts two hours. Friday took five.
Hats
The hats came. She opened the box and looked at them along with the scarves. She played around with them - a ball cap, a beret, a scarf and a winter hat. The girls looked at them and sat on the bed with her looking at the hats, commenting, admiring and playing with them. Then she put them up on the doll case that faces our bed. There they sat, staring down at us and a reminder of the things to come. The haircut came next and it was cute and short, a perfect summertime hairdo. It fit her and made her look up-to-date and feminine, not 20 but not 50 and not stuck in the '70s.
It started slowly, and we saw small amounts on the pillows and in the drain. Then we noticed that her pyjama top had more every morning. It is now everywhere. Her hair is falling out rapidly and completely. The hats are a help in public but at home it is hard as they sit and stare and the hair just falls like rain.
It is amazing how much of our identity is tied to our appearance. Yes, I know that is obvious but it is the obvious things that are making such impact. Our youngest child said that now Mommy's hair looks just like Daddy's. That resulted in both laughter and tears.
The good thing is that it means the chemo drugs are working and you get to buy more hats.
It started slowly, and we saw small amounts on the pillows and in the drain. Then we noticed that her pyjama top had more every morning. It is now everywhere. Her hair is falling out rapidly and completely. The hats are a help in public but at home it is hard as they sit and stare and the hair just falls like rain.
It is amazing how much of our identity is tied to our appearance. Yes, I know that is obvious but it is the obvious things that are making such impact. Our youngest child said that now Mommy's hair looks just like Daddy's. That resulted in both laughter and tears.
The good thing is that it means the chemo drugs are working and you get to buy more hats.
Of Straws and hope
We have certain milestones that give us hope and we look for them much as ancient wizards read runes and looked for signs in the heavens. We try to divine them and look for meaning in them as a sign of hope of things to come. One such sign came into our lives.
At the beginning of treatment the Oncologist said that the primary tumor "fed" the smaller tumors in the bone and that by killing the primary and drying up all the estrogen in her body, we would get rid of the ones affecting her bones. One particularly nasty tumor is lodged on her spine and is eating away at the bone material on her spine. This of course has caused extreme pain. It affected her walk and caused so much pain that we had to use a wheelchair as she could not walk.
We had the usual assortment of pain killers - morphine, Oxycontin, percocet. They would mask part of the pain and she could walk with a rocking gait, dragging her right leg along as much as employing it. Every step was painful and you cold see it in her face. Climbing even the smallest stair step was arduous. It was shear pain in action.
Last week she walked towards the car and I noticed that she had a smoother but still rolling gait. She also was not grimacing as she took steps.
"Hey, you're walking better." I said. "How do you feel?"
"It doesn't hurt as much. I can walk a bit better.", she replied.
I waited and watched as the next several days went by. Each day I looked to see if she was moving easier and more fluidly, normally. It appeared she was and each day I told her and asked if she was feeling better. Every day the reply was the pain is better, much better.
Saturday she said she was pain free and not taking pain meds.
I look into my crystal ball, throw bones and divine the signs. Perhaps I am grasping at straws, perhaps things are getting better.
At the beginning of treatment the Oncologist said that the primary tumor "fed" the smaller tumors in the bone and that by killing the primary and drying up all the estrogen in her body, we would get rid of the ones affecting her bones. One particularly nasty tumor is lodged on her spine and is eating away at the bone material on her spine. This of course has caused extreme pain. It affected her walk and caused so much pain that we had to use a wheelchair as she could not walk.
We had the usual assortment of pain killers - morphine, Oxycontin, percocet. They would mask part of the pain and she could walk with a rocking gait, dragging her right leg along as much as employing it. Every step was painful and you cold see it in her face. Climbing even the smallest stair step was arduous. It was shear pain in action.
Last week she walked towards the car and I noticed that she had a smoother but still rolling gait. She also was not grimacing as she took steps.
"Hey, you're walking better." I said. "How do you feel?"
"It doesn't hurt as much. I can walk a bit better.", she replied.
I waited and watched as the next several days went by. Each day I looked to see if she was moving easier and more fluidly, normally. It appeared she was and each day I told her and asked if she was feeling better. Every day the reply was the pain is better, much better.
Saturday she said she was pain free and not taking pain meds.
I look into my crystal ball, throw bones and divine the signs. Perhaps I am grasping at straws, perhaps things are getting better.
Friday, August 17, 2007
Don't Get Me Wrong
Now don't get me wrong. I love my wife. I love her so much. I will care for her and stroke the hair that is falling out and hold her hand. I will love her and care for her always. We all think we do not like our spouses for some reason or other from time to time. We look for tiny faults that will disqualify them. I've done it and I believe everyone has.
It does not matter now. I am so in love with her that I would (and have asked God to) have the pain transfer to my body if it would save her from a moment of pain, suffering, sickness and doubt.
All I want is for her to get well. I want to wake up tomorrow really hung over and find her saying "Man those were some bad dreams you were having last night."
I can't stand the pain she is in and it is only week three.
Week four is the end of the first cycle, 28 days. Then we begin again with drip infusion, nausea, tamoxifen on days 9, 14, 19, 24, 28. Each day is separated by periods of nausea and pain. Her waking hours are divided by naps and pain and nausea. My moments are punctuated by fear and worry with a small amount of gut wrenching terror thrown in to spice it up. I know that at some point we will have the waxing and waning of her care and hospital visits hit an imbalance with school and work scheduling and the kids will be abandoned with no support mechanism to provide for them. I know it will happen and I worry. Did I leave the toaster or coffee pot on? Oh well I can't worry about everything.
It does not matter now. I am so in love with her that I would (and have asked God to) have the pain transfer to my body if it would save her from a moment of pain, suffering, sickness and doubt.
All I want is for her to get well. I want to wake up tomorrow really hung over and find her saying "Man those were some bad dreams you were having last night."
I can't stand the pain she is in and it is only week three.
Week four is the end of the first cycle, 28 days. Then we begin again with drip infusion, nausea, tamoxifen on days 9, 14, 19, 24, 28. Each day is separated by periods of nausea and pain. Her waking hours are divided by naps and pain and nausea. My moments are punctuated by fear and worry with a small amount of gut wrenching terror thrown in to spice it up. I know that at some point we will have the waxing and waning of her care and hospital visits hit an imbalance with school and work scheduling and the kids will be abandoned with no support mechanism to provide for them. I know it will happen and I worry. Did I leave the toaster or coffee pot on? Oh well I can't worry about everything.
Throwing up
8/17/07
I hate vomit. I truly do. It stinks, it is messy it makes me want to throw up. There is nothing I can say in praise of it. I remember as a kid in elementary school that a kid named Robert threw up unexpectedly. He was walking towards the pencil sharpener and BOOM there it was. That caused the little girl upon whose desk it landed to throw up and her desk mate also. Soon several had thrown up and the janitor was in for a very bad day.
With chemo there is nausea. With the pain of cancer growing on your spine and eating away the bone, there is pain. With heavy pain killers there is nausea. So with both the chemo and the pain killers there is nausea. Fortunately there is anti-nausea medication. However, if you don't get out in front of it then there is nothing you can do. It just doesn't work and to believe otherwise is delusional. You must take the goddamned meds like they tell you or it does no good!
Tonight dinner came and went figuratively and literally. The janitor had a very bad evening.
I hate vomit. I truly do. It stinks, it is messy it makes me want to throw up. There is nothing I can say in praise of it. I remember as a kid in elementary school that a kid named Robert threw up unexpectedly. He was walking towards the pencil sharpener and BOOM there it was. That caused the little girl upon whose desk it landed to throw up and her desk mate also. Soon several had thrown up and the janitor was in for a very bad day.
With chemo there is nausea. With the pain of cancer growing on your spine and eating away the bone, there is pain. With heavy pain killers there is nausea. So with both the chemo and the pain killers there is nausea. Fortunately there is anti-nausea medication. However, if you don't get out in front of it then there is nothing you can do. It just doesn't work and to believe otherwise is delusional. You must take the goddamned meds like they tell you or it does no good!
Tonight dinner came and went figuratively and literally. The janitor had a very bad evening.
Of bad teeth and dreams
8/16/07
I am walking through a town and it there are dark skies behind me. I am walking away from them and as I walk there appears an old woman to my right. I try to tell her something but my teeth feel strange. I open my mouth but I spit out a piece of my front teeth. I put my hand to my teeth and they come back bloody. I pull on the teeth and they are rotten and falling out in my hands. My face is bloody from the teeth and I look into my rotten and decayed teeth. There is onion grass growing in the pieces that are in my hand and brown decaying dirt. I turn to talk to the now old woman next to me and I wake up.
Classical dream analysis says that Iam worried that my health is failing or that I am afraid of losing someone dear to me. The old woman is a reflection oor the object of the worry I am afraid of losing my dear.
I am walking through a town and it there are dark skies behind me. I am walking away from them and as I walk there appears an old woman to my right. I try to tell her something but my teeth feel strange. I open my mouth but I spit out a piece of my front teeth. I put my hand to my teeth and they come back bloody. I pull on the teeth and they are rotten and falling out in my hands. My face is bloody from the teeth and I look into my rotten and decayed teeth. There is onion grass growing in the pieces that are in my hand and brown decaying dirt. I turn to talk to the now old woman next to me and I wake up.
Classical dream analysis says that Iam worried that my health is failing or that I am afraid of losing someone dear to me. The old woman is a reflection oor the object of the worry I am afraid of losing my dear.
Wednesday, August 15, 2007
The Praying Life
8/15/07
I had a grandmother who believed in the power of things unseen. I had a friend who believed that there was nothing more powerful than prayer. I have many friends who believe it all to be fantasy and what you see is all you get.
My friend who belies deeply says that not utilizing prayer is like a man who receives a ticket and never goes to the banquet. He says it is included with the price that was paid for you. You are missing out if you do not take from that banquet. I like that. I tend to think it like a guy who only uses 3 tools in his box and never thinks of using the others. There is so much more he could fix and enjoy if he used all the tools at his disposal.
So I have enlisted prayer in this fight. I have asked prayer groups and prayer warriors. I have spoken with monks and carmelite nuns, Internet preachers and people who are genuinely concerned and pray for others as a mission in their lives. Some have responded personally and are quite compelling. One lady offered to pray for my wife at her church on Wednesday. One guy has taken it on as a personal mission.
Of course there are frauds. One lady directed me to her site where she would create a special memo for me, divinely inspired for a small and manageable fee. The card would be renewed monthly and she took credit cards to make it easy. Another asked for a donation right out of the box.
Most however are like one person who spoke to his Rabbi and asked if he would insert a prayer for healing into a niche in the western wall. The rabbi said he would and in some niche there now sits a small scrap of paper requesting that God heal my wife. Could I ask for more?
I wait now for a miracle. I pray for them all and ask for tiny mercies to be shown to them. That is all we can ask for and more than we all deserve, tiny, precious mercies.
I had a grandmother who believed in the power of things unseen. I had a friend who believed that there was nothing more powerful than prayer. I have many friends who believe it all to be fantasy and what you see is all you get.
My friend who belies deeply says that not utilizing prayer is like a man who receives a ticket and never goes to the banquet. He says it is included with the price that was paid for you. You are missing out if you do not take from that banquet. I like that. I tend to think it like a guy who only uses 3 tools in his box and never thinks of using the others. There is so much more he could fix and enjoy if he used all the tools at his disposal.
So I have enlisted prayer in this fight. I have asked prayer groups and prayer warriors. I have spoken with monks and carmelite nuns, Internet preachers and people who are genuinely concerned and pray for others as a mission in their lives. Some have responded personally and are quite compelling. One lady offered to pray for my wife at her church on Wednesday. One guy has taken it on as a personal mission.
Of course there are frauds. One lady directed me to her site where she would create a special memo for me, divinely inspired for a small and manageable fee. The card would be renewed monthly and she took credit cards to make it easy. Another asked for a donation right out of the box.
Most however are like one person who spoke to his Rabbi and asked if he would insert a prayer for healing into a niche in the western wall. The rabbi said he would and in some niche there now sits a small scrap of paper requesting that God heal my wife. Could I ask for more?
I wait now for a miracle. I pray for them all and ask for tiny mercies to be shown to them. That is all we can ask for and more than we all deserve, tiny, precious mercies.
Emergency Room 2
We have good days and bad days, some from the chemo and some from us.
The sisters came in on Friday and there was an air of love and reconciliation in the air. I prepared a big dinner and we all shared in it laughing and telling stories of good times. The two sisters that had been so far apart now seemed close. My wife tired and after helping her up and to bed I shared some moments with her sisters over a glass of wine. It was as though no storm had descended and a cloudless sky reigned.
The following day my wife was weaker and we visited a few places on a Sunday drive. It was nice but I could see her grow weaker. We stopped so she could have some rest and we sat on a park bench when she became ill, very ill. I helped her up and to the car and we packed everyone back in and drove home as quickly as possible.
Here is the thing, when you get fatigued the pain sets in and seems to increase. The pain becomes so great that you become nauseous. Once you are nauseous you can not keep medication for pain or water down so you become weaker and in more pain and then you become more nauseous and the cycle repeats.
We got her to bed and she had a fitful night with little sleep. In the morning she sounded dry and raspy and weak. I didn't know what to do so I called her oncologist. Then I called the infusion center and the ER. She needed liquids, an IV, probably some electrolytes and pain killers as well as nausea meds. We needed to get out in front of this wave, this tidal wave.
Doctors can not diagnose over the phone and without seeing the patient they can not get a feel for the extent of the problem. I realize that and understand that but it is still hard when the man in charge won't make a decision and leaves it up to the husband. "Well if you think she should go to the ER then she should go to the ER if you don't then she shouldn't." Sage advice. I wonder what I paid for that.
So I made the decision to take her in. Her sister the nurse traveled with us.
ERs are hard places to be and an ER on Sunday is sad and desperate. It is also a place where revelations occur and one occurred to me. A young lady was present and when it was her turn at the triage desk she was there for an earache which made her nauseous. She had no insurance and so was there with her small child seeking aid. How horrible that she needs to rely on an ER for that type of care and that she could not afford to get treated before it was at that point. We need to do something about that for compassion's sake if nothing else.
Back to my wife. We secured a room because she is one of the staff and so gets attention lavished on her in a manner that others can not get. They start her on an IV drip and she ends up taking nearly 3 liters over the next 24 hours along with potassium and other electrolytes. They also can not seem to get out in front of the pain and nausea. After almost two hours she is still in pain and feeling sick, in fact, throwing up. They finally hit her with dilaudid in a fairly strong amount. The pain lessens and she gets an anti nausea medication that also works in tandem with the dilaudid to make her quite euphoric. Then the anti nausea meds kick in and she begins to have a lowe blood pressure and her pulse rate declines somewhat. We are four hours into the experience and the afternoon is drawing to a close.
They decide that they need to determine if there is something they missed on a previous scan and so she gets a cat scan and x-ray of her abdomen. Then they decide she is staying overnight. Her sister decides she will sleep in the chair and my beloved slips into a peaceful sleep.
I exit after 8 hours in the storm and need to rive home to take care of my daughters, cook and get my little one into a bath then close the day. Tomorrow will come early once again.
The sisters came in on Friday and there was an air of love and reconciliation in the air. I prepared a big dinner and we all shared in it laughing and telling stories of good times. The two sisters that had been so far apart now seemed close. My wife tired and after helping her up and to bed I shared some moments with her sisters over a glass of wine. It was as though no storm had descended and a cloudless sky reigned.
The following day my wife was weaker and we visited a few places on a Sunday drive. It was nice but I could see her grow weaker. We stopped so she could have some rest and we sat on a park bench when she became ill, very ill. I helped her up and to the car and we packed everyone back in and drove home as quickly as possible.
Here is the thing, when you get fatigued the pain sets in and seems to increase. The pain becomes so great that you become nauseous. Once you are nauseous you can not keep medication for pain or water down so you become weaker and in more pain and then you become more nauseous and the cycle repeats.
We got her to bed and she had a fitful night with little sleep. In the morning she sounded dry and raspy and weak. I didn't know what to do so I called her oncologist. Then I called the infusion center and the ER. She needed liquids, an IV, probably some electrolytes and pain killers as well as nausea meds. We needed to get out in front of this wave, this tidal wave.
Doctors can not diagnose over the phone and without seeing the patient they can not get a feel for the extent of the problem. I realize that and understand that but it is still hard when the man in charge won't make a decision and leaves it up to the husband. "Well if you think she should go to the ER then she should go to the ER if you don't then she shouldn't." Sage advice. I wonder what I paid for that.
So I made the decision to take her in. Her sister the nurse traveled with us.
ERs are hard places to be and an ER on Sunday is sad and desperate. It is also a place where revelations occur and one occurred to me. A young lady was present and when it was her turn at the triage desk she was there for an earache which made her nauseous. She had no insurance and so was there with her small child seeking aid. How horrible that she needs to rely on an ER for that type of care and that she could not afford to get treated before it was at that point. We need to do something about that for compassion's sake if nothing else.
Back to my wife. We secured a room because she is one of the staff and so gets attention lavished on her in a manner that others can not get. They start her on an IV drip and she ends up taking nearly 3 liters over the next 24 hours along with potassium and other electrolytes. They also can not seem to get out in front of the pain and nausea. After almost two hours she is still in pain and feeling sick, in fact, throwing up. They finally hit her with dilaudid in a fairly strong amount. The pain lessens and she gets an anti nausea medication that also works in tandem with the dilaudid to make her quite euphoric. Then the anti nausea meds kick in and she begins to have a lowe blood pressure and her pulse rate declines somewhat. We are four hours into the experience and the afternoon is drawing to a close.
They decide that they need to determine if there is something they missed on a previous scan and so she gets a cat scan and x-ray of her abdomen. Then they decide she is staying overnight. Her sister decides she will sleep in the chair and my beloved slips into a peaceful sleep.
I exit after 8 hours in the storm and need to rive home to take care of my daughters, cook and get my little one into a bath then close the day. Tomorrow will come early once again.
Monday, August 13, 2007
ER 1
8/6/07
I am on a brief business trip. My adult son is with his mother and the daughters are safely off to activities. I make my business train to DC and am working with a client. I am getting things done.
The cellphone goes off in my pocket. I see the number from the house excuse myself from the meeting and answer normally. It is my wife. She is in pain and nauseous. Her voice is raspy and dry. She sounds tired. We talk and she keeps repeating that she is very tired. I can tell there is a problem.
"Let me speak to ---."
"Hey dad."
"What's up with Mom"
"I dunno I was watching Law and Order."
"What the f--- are you doing watching the tv? You're supposed to be helping your mom."
"Wait dad, she said she is alright and doesn't need any help."
"She says she is in pain and feels sick to her stomach."
"She did not tell me, I swear it. So what should I do?"
"I don't know, let me think. Is she hot?"
"She asked me to up the AC."
"Crap! Can she drink any water?"
"Nope, she says it makes her feel really sick."
"Okay, I'm going to call her point person at the cancer center."
I make the call and they ask me questions and then look at her chart. My wife had just received an injection to increase her white cell count on Friday. It would cause her pain and in pain she would take meds which would cause her to get nauseated and throw them up. I needed to get her in for a little IV rehydration and meds.
I step out of the building and call the house. A long time before an answer, not good or am I paranoid. She answers.
"Okay, you need to go in to the ER and get some fluids."
"No, I'm okay really. I'll be fine."
"You're not listening. The nurse at the center said go."
"No, I'm fine."
"I'll call back."
I hang up and get my son on his cell phone.
"Take your mother to the ER and don't take no for an answer. Nag her, force her."
"Why what's up."
"She is dehydrated and soon she will throw up and then get an elevated temp and we have problems. Get her there now so we won't have problems."
"But dad, she doesn't want to go."
"I'M NOT ASKING YOU! I'M TELLING YOU. I'M 400 MILES AWAY AND CAN'T GET THERE SO DO WHAT I TOLD YOU TO. HER POINT NURSE WILL MEET YOU AT THE ER."
"You don't have to yell and I'm not going to.."
I hang up and call my wife. I tell her what the point nurse said and tell her she has to go now. She agrees and they start off.
I rejoin the meeting and maintain a calm demeanor. I go outside at a break and make a call to her cell.
"So, what is going on?"
"Well I've been sitting here for about an hour waiting."
"I'll call back."
I pull out the number of the lady on my wife's staff who makes things happen and dial her up. I explain the situation and she asks me to hold for a moment. I hear her get on the other line and can tell that someone is getting some direct questions. I hear her call and speak to another person. She rejoins me on the line.
"Im on my way to make certain it happens. You call anytime and tell her to call me if she is feeling bad."
I call back to my wife and strangely things began to happen and move. I call to arrange pickup for daughter 1 & 2. I leave her alone and complete my meeting.
Late that evening I get a call back from my wife and she is crying. She did not know how dehydrated she was. The pain meds are adjusted and a new anti nausea med is prescribed. She now has dilaudid along with oxy contin. I can't even pronounce the nausea drug but she says it makes her euphoric.
My son calls with a shaky voice. "I'm really sorry dad. I didn't know how bad it was."
The nurse in charge and the point nurse call to tell me we caught it in time. We broke the cycle of dehydrate, nausea, ineffective nausea med, throwing up, dehydration, etc. Apparently if the temp gets too high and she can't get the nausea to work then things can get bad.
Note to self, no business trips just yet.
I am on a brief business trip. My adult son is with his mother and the daughters are safely off to activities. I make my business train to DC and am working with a client. I am getting things done.
The cellphone goes off in my pocket. I see the number from the house excuse myself from the meeting and answer normally. It is my wife. She is in pain and nauseous. Her voice is raspy and dry. She sounds tired. We talk and she keeps repeating that she is very tired. I can tell there is a problem.
"Let me speak to ---."
"Hey dad."
"What's up with Mom"
"I dunno I was watching Law and Order."
"What the f--- are you doing watching the tv? You're supposed to be helping your mom."
"Wait dad, she said she is alright and doesn't need any help."
"She says she is in pain and feels sick to her stomach."
"She did not tell me, I swear it. So what should I do?"
"I don't know, let me think. Is she hot?"
"She asked me to up the AC."
"Crap! Can she drink any water?"
"Nope, she says it makes her feel really sick."
"Okay, I'm going to call her point person at the cancer center."
I make the call and they ask me questions and then look at her chart. My wife had just received an injection to increase her white cell count on Friday. It would cause her pain and in pain she would take meds which would cause her to get nauseated and throw them up. I needed to get her in for a little IV rehydration and meds.
I step out of the building and call the house. A long time before an answer, not good or am I paranoid. She answers.
"Okay, you need to go in to the ER and get some fluids."
"No, I'm okay really. I'll be fine."
"You're not listening. The nurse at the center said go."
"No, I'm fine."
"I'll call back."
I hang up and get my son on his cell phone.
"Take your mother to the ER and don't take no for an answer. Nag her, force her."
"Why what's up."
"She is dehydrated and soon she will throw up and then get an elevated temp and we have problems. Get her there now so we won't have problems."
"But dad, she doesn't want to go."
"I'M NOT ASKING YOU! I'M TELLING YOU. I'M 400 MILES AWAY AND CAN'T GET THERE SO DO WHAT I TOLD YOU TO. HER POINT NURSE WILL MEET YOU AT THE ER."
"You don't have to yell and I'm not going to.."
I hang up and call my wife. I tell her what the point nurse said and tell her she has to go now. She agrees and they start off.
I rejoin the meeting and maintain a calm demeanor. I go outside at a break and make a call to her cell.
"So, what is going on?"
"Well I've been sitting here for about an hour waiting."
"I'll call back."
I pull out the number of the lady on my wife's staff who makes things happen and dial her up. I explain the situation and she asks me to hold for a moment. I hear her get on the other line and can tell that someone is getting some direct questions. I hear her call and speak to another person. She rejoins me on the line.
"Im on my way to make certain it happens. You call anytime and tell her to call me if she is feeling bad."
I call back to my wife and strangely things began to happen and move. I call to arrange pickup for daughter 1 & 2. I leave her alone and complete my meeting.
Late that evening I get a call back from my wife and she is crying. She did not know how dehydrated she was. The pain meds are adjusted and a new anti nausea med is prescribed. She now has dilaudid along with oxy contin. I can't even pronounce the nausea drug but she says it makes her euphoric.
My son calls with a shaky voice. "I'm really sorry dad. I didn't know how bad it was."
The nurse in charge and the point nurse call to tell me we caught it in time. We broke the cycle of dehydrate, nausea, ineffective nausea med, throwing up, dehydration, etc. Apparently if the temp gets too high and she can't get the nausea to work then things can get bad.
Note to self, no business trips just yet.
Caregiving
Caregivers suffer fatigue and I never once considered it. When I knew of my wife's cancer after I picked my self off the floor and could finally take a breath, I set a plan. I contacted the HR department of her work for an insurance review, contacted our financial advisor, looked at the supplemental insurance and disability plans, reviewed our life insurance. I then created a plan to deal with almost any contingency and began acting on it.
I found places and activities for our daughters. I got assurances of cooperation on picking up one and taking the other and had things well scripted. I found people to bring food and do shopping, people who could be with my wife so I could do my job.
I looked at menus to cook and marshaled the kids to clean and do the laundry (I love my pink socks) and everyone had a responsibility. I would organize and prepare and make it all fit into a neat little plan. Then I could take care of my wife's needs as they grew.
I spent time with each daughter so they could cry or question and be emotional. I patiently answered questions and wiped tears. I handled anger and rage and gave pep talks which I believe. I was all over it for them.
I left out a small item, which was down time and sleep for me. In two short weeks at the front end of this experience I was dead on my feet. I was also emotionally exhausted. In fact one day the man of steel was returning from dropping off daughter number one for a little R&R when I put on a bluegrass CD and cried for 30 minutes while I was driving 90 mph down I84.
Then I began missing a beat. The synapses weren't firing. In fact I wasn't firing on all 8 cylinders, maybe 5 at the most. I was not thinking logically and having to search for words. My normally quick and witty responses became slow and dull. I answered questions incorrectly and incoherently at one point. What was the matter, I was getting 3-5 hours sleep each night.
My running was suffering. I was up to 20-25 miles/week and it was now 3 miles/day of running through mud. My breathing was not good and I was dead after 30 minutes of level ground workout.
So I was spent. I slept last night and I slept like the dead. I got up and discharged duties and went back to bed. I got up and mid afternoon I fell asleep at my desk. I was massively hungry and thirsty too and fueled up probably 4000-5000 calories along with nearly a gallon of water.
Not oddly, I feel better. Note to self, take care of yourself. You are no good to anyone superman when you are down and out. Also find someone to talk with.
I found places and activities for our daughters. I got assurances of cooperation on picking up one and taking the other and had things well scripted. I found people to bring food and do shopping, people who could be with my wife so I could do my job.
I looked at menus to cook and marshaled the kids to clean and do the laundry (I love my pink socks) and everyone had a responsibility. I would organize and prepare and make it all fit into a neat little plan. Then I could take care of my wife's needs as they grew.
I spent time with each daughter so they could cry or question and be emotional. I patiently answered questions and wiped tears. I handled anger and rage and gave pep talks which I believe. I was all over it for them.
I left out a small item, which was down time and sleep for me. In two short weeks at the front end of this experience I was dead on my feet. I was also emotionally exhausted. In fact one day the man of steel was returning from dropping off daughter number one for a little R&R when I put on a bluegrass CD and cried for 30 minutes while I was driving 90 mph down I84.
Then I began missing a beat. The synapses weren't firing. In fact I wasn't firing on all 8 cylinders, maybe 5 at the most. I was not thinking logically and having to search for words. My normally quick and witty responses became slow and dull. I answered questions incorrectly and incoherently at one point. What was the matter, I was getting 3-5 hours sleep each night.
My running was suffering. I was up to 20-25 miles/week and it was now 3 miles/day of running through mud. My breathing was not good and I was dead after 30 minutes of level ground workout.
So I was spent. I slept last night and I slept like the dead. I got up and discharged duties and went back to bed. I got up and mid afternoon I fell asleep at my desk. I was massively hungry and thirsty too and fueled up probably 4000-5000 calories along with nearly a gallon of water.
Not oddly, I feel better. Note to self, take care of yourself. You are no good to anyone superman when you are down and out. Also find someone to talk with.
First Treatment
8/1/07
We walk into the lobby of the infusion center and it is very pretty. There is a string quartet playing as patients enter and leave the treatment center. A man is talking to another man. He compares it to the string quartets playing at the Nazi prison camps as the trains unloaded. That chills me.
A man is seated in the lobby. He has no hair whatsoever on his head, face, eyebrows or arms. His sons who are young sit with him. That has to scare the shit out of them.
"How was your day?" "Great, I watched dad get chemo, it made him sick and nearly killed him and there were all these people there who looked like skeletons. I can't wait to go again!"
The horrors we visit on our children.
More later.
We walk into the lobby of the infusion center and it is very pretty. There is a string quartet playing as patients enter and leave the treatment center. A man is talking to another man. He compares it to the string quartets playing at the Nazi prison camps as the trains unloaded. That chills me.
A man is seated in the lobby. He has no hair whatsoever on his head, face, eyebrows or arms. His sons who are young sit with him. That has to scare the shit out of them.
"How was your day?" "Great, I watched dad get chemo, it made him sick and nearly killed him and there were all these people there who looked like skeletons. I can't wait to go again!"
The horrors we visit on our children.
More later.
Testng and Horrors
7/30/07
The tests were horrible. The hospital where she worked arranged for same day service on all the tests and the staff was alerted. We were ushered in without registration and she was escorted to the area without delay. Usually for a non - hospital/medical person the tests would have occurred two or three days later and on successive days and results would have been processed at the doctor's pleasure and a week later you would have the answers. All that is precious time lost.
Now I have to say that survival rates from what I have found are affected by how quickly and thoroughly the process is run. Also they are affected by the education level of the patient, willingness to submit to treatment, the ability of the hospital and the experience they have. If the hospital treats two or three a year versus two or three a day then there is a gap in the ability to effectively treat. Also I wish everyone could get the treatment a hospital accords one of their own. It is not fair and I am sorry but I want my wife to live and will take every advantage I am given.
The MUGGA scan and the other tests require a great deal of poking and prodding and drawing of blood. It is gruesome. Then comes the radiology where they inject a radioactive dye into the bloodstream and then track it as it makes a picture of it's path and the heart's efficiency in pumping. The blood tests require more poking and leaches. Then comes the biopsy where they insert an 8mm needle into the breast and into the lump to get a core sample.
The tests take all day and she is exhausted. We go home. Tomorrow if all is well she begins chemo.
The tests were horrible. The hospital where she worked arranged for same day service on all the tests and the staff was alerted. We were ushered in without registration and she was escorted to the area without delay. Usually for a non - hospital/medical person the tests would have occurred two or three days later and on successive days and results would have been processed at the doctor's pleasure and a week later you would have the answers. All that is precious time lost.
Now I have to say that survival rates from what I have found are affected by how quickly and thoroughly the process is run. Also they are affected by the education level of the patient, willingness to submit to treatment, the ability of the hospital and the experience they have. If the hospital treats two or three a year versus two or three a day then there is a gap in the ability to effectively treat. Also I wish everyone could get the treatment a hospital accords one of their own. It is not fair and I am sorry but I want my wife to live and will take every advantage I am given.
The MUGGA scan and the other tests require a great deal of poking and prodding and drawing of blood. It is gruesome. Then comes the radiology where they inject a radioactive dye into the bloodstream and then track it as it makes a picture of it's path and the heart's efficiency in pumping. The blood tests require more poking and leaches. Then comes the biopsy where they insert an 8mm needle into the breast and into the lump to get a core sample.
The tests take all day and she is exhausted. We go home. Tomorrow if all is well she begins chemo.
Words I Don't Understand
7/30/07
I was told by a person wise in the know that I needed to take a notebook and write everything down that is said between the doctor and my wife. She may understand the things the doctor is saying but it will all be a buzz to the uninitiated. My wife is a nurse. I am glad I took the notebook. Here is a sample of the words:
biopsy, stage 4, lumpectomy, nodes, lymph system, metastasis, chemo, estogen driven, 8mm needle biopsy, systemic therapy, cyto-toxic, alkaloids, taxains, MUGGA, Zymeda, epidemiology, phytochemicals, methotrexate, mscontin, arimidex anastrozole, tamoxifen citrate, nonsteroidal antiestrogenic, her2 overexpression, anthracycline antibiotics, cytoxan
We started with a review of the MRI and x-ray. The primary tumor had spread (metastisized) into the lymph system and into the bone. There was a spot on the liver that was small and did not concern him, same for the lung. The doctor wants to start the chemo immediately following the next tests. Over 50% of the breast cancers are estrogen driven which is good because they can give chemos to dry up every bit of estrogen in the body. They couple that with a poison that kills all fast replicating cells and then hit it with a dose that goes after the RNA and destroys it. The doctor says that Stage IV is terrible but most women (90%) go into remission.
As a note, 1/7 of the women in the US get cancer. A cancer is a unique organism. Your cells in your liver know they are not like the cells in your stomach and not like the cells in your skin. Also cells have a life cycle. They are born, live, reproduce and die much like Lutherans. Cancer cells don't know they are different from the surrounding cells and so they invade by growing on to the surrounding area. They also get into lymph and blood systems and travel. They also do not understand the life cycles. They are born, live and reproduce and reproduce and reproduce much like Catholics and Mormons and very poor heathens (I was all three so I get a pass).
The tests will determine if my wife's heart can take the stress and pump efficiently and whether the cancer is estrogen driven. They will give medication for pain, nausea, chemotherapy and to build up the white cell count.
If she can't take the strain then it is terrible. If the cancer is not estrogen driven thn taht is terrible but treatable. I can't atke any more bad news.
I was told by a person wise in the know that I needed to take a notebook and write everything down that is said between the doctor and my wife. She may understand the things the doctor is saying but it will all be a buzz to the uninitiated. My wife is a nurse. I am glad I took the notebook. Here is a sample of the words:
biopsy, stage 4, lumpectomy, nodes, lymph system, metastasis, chemo, estogen driven, 8mm needle biopsy, systemic therapy, cyto-toxic, alkaloids, taxains, MUGGA, Zymeda, epidemiology, phytochemicals, methotrexate, mscontin, arimidex anastrozole, tamoxifen citrate, nonsteroidal antiestrogenic, her2 overexpression, anthracycline antibiotics, cytoxan
We started with a review of the MRI and x-ray. The primary tumor had spread (metastisized) into the lymph system and into the bone. There was a spot on the liver that was small and did not concern him, same for the lung. The doctor wants to start the chemo immediately following the next tests. Over 50% of the breast cancers are estrogen driven which is good because they can give chemos to dry up every bit of estrogen in the body. They couple that with a poison that kills all fast replicating cells and then hit it with a dose that goes after the RNA and destroys it. The doctor says that Stage IV is terrible but most women (90%) go into remission.
As a note, 1/7 of the women in the US get cancer. A cancer is a unique organism. Your cells in your liver know they are not like the cells in your stomach and not like the cells in your skin. Also cells have a life cycle. They are born, live, reproduce and die much like Lutherans. Cancer cells don't know they are different from the surrounding cells and so they invade by growing on to the surrounding area. They also get into lymph and blood systems and travel. They also do not understand the life cycles. They are born, live and reproduce and reproduce and reproduce much like Catholics and Mormons and very poor heathens (I was all three so I get a pass).
The tests will determine if my wife's heart can take the stress and pump efficiently and whether the cancer is estrogen driven. They will give medication for pain, nausea, chemotherapy and to build up the white cell count.
If she can't take the strain then it is terrible. If the cancer is not estrogen driven thn taht is terrible but treatable. I can't atke any more bad news.
Sunday, July 29, 2007
The Floor Fell Out From Under
Friday July 27 5pm
The floor fell out from under me in such a way that all I could see were dark clouds beneath me as I fell. There was nothing beneath me and I could not find the bottom.
What could cause such a fall?
"John, I have cancer. Its in my breast and spine and pelvis." Her voice trailed off and I tried to catch my breath.
"Oh shit, sweetheart. Oh my god."
"Please don't say I told you so. Please don't say it. I know I should have gone to see someone earlier...." Again my love's voice trailed off.
"I would never say that, never. What the fuck are we going to to do?" I said.
"I don't know. I go for a CAT scan tomorrow and then on Monday I have an appointment with the doctor."
"We have an appointment love. I'm going with you." I said.
"We won't know how bad it is until Monday. The CAT scan will show if it is in my liver or lungs."
"Let's sit down and let me get you a glass of wine."
So that is how the floor fell out from under me. We both cried and cried and drank a bottle of white wine until the girls got bored with TV and came to determine what we would eaat for dinner.
I cooked grilled scallops with diced summer squash sauteed in olive oil and garlic and served them over pasta. We opened another bottle of wine.
Talk was sparse and our 14 year old daughter sensed something was wrong but did not really know. Our 8 year old was as boisterous as, well, an 8 year old.
Later I put the little one to bed and joned my love in bed. We cried again and I kissed the tears away. I wrote a poem for her and left it on the pillow and we held hands while we fell asleep or as close to it as one can get.
Later that night she got up and told our older daughter.
That was the end of day one, the day the floor fell out from under me.
Let's back up a bit though and get a bit of perspective on this. I think it is important. Without it there is nothing for a frame of reference.
Back in January of 2007 my love told me her back was hurting. She had stumbled on the ice and I thought it was from that. Later I was to fall off a downhill sled and hurt mine so it wasn't anything that would or should raise concern.
We went through February, March, April and it was not getting really any better. I encouraged, begged and demanded she see someone and sh found a Chiropractor in May and got an appointment. He deduced that it was a muscle injury then a slipped disk. After treating my love for a month without positive results he sugested she see an MD. Additionally a counselor suggested the same. My love promised.
We went on vacation in early July and the wheels ground slowly forward. There was a visit and pain meds, a scheduled X-ray then MRI. Each required a week or so between appointments. The chiropractor continued and the pain increased. She could not wal or climb the stairs.
Finally on Friday July 20, 2007 she could not get up from her desk at work, a regionally famous hospital Vassar Brothers. They rushed her to the ER and told her it was a back spasm and gave her percocet. Drug them up and move them out! The doctor gave many well meaning nods of assention as he and my love decided it was nothing more than a bad back.
The X-ray was not conclusive, the MRI much more so, the mammogram horrifying and the hammer blow deliverd by the CAT scan. Monday we will know more and so we wait.
The floor fell out from under me in such a way that all I could see were dark clouds beneath me as I fell. There was nothing beneath me and I could not find the bottom.
What could cause such a fall?
"John, I have cancer. Its in my breast and spine and pelvis." Her voice trailed off and I tried to catch my breath.
"Oh shit, sweetheart. Oh my god."
"Please don't say I told you so. Please don't say it. I know I should have gone to see someone earlier...." Again my love's voice trailed off.
"I would never say that, never. What the fuck are we going to to do?" I said.
"I don't know. I go for a CAT scan tomorrow and then on Monday I have an appointment with the doctor."
"We have an appointment love. I'm going with you." I said.
"We won't know how bad it is until Monday. The CAT scan will show if it is in my liver or lungs."
"Let's sit down and let me get you a glass of wine."
So that is how the floor fell out from under me. We both cried and cried and drank a bottle of white wine until the girls got bored with TV and came to determine what we would eaat for dinner.
I cooked grilled scallops with diced summer squash sauteed in olive oil and garlic and served them over pasta. We opened another bottle of wine.
Talk was sparse and our 14 year old daughter sensed something was wrong but did not really know. Our 8 year old was as boisterous as, well, an 8 year old.
Later I put the little one to bed and joned my love in bed. We cried again and I kissed the tears away. I wrote a poem for her and left it on the pillow and we held hands while we fell asleep or as close to it as one can get.
Later that night she got up and told our older daughter.
That was the end of day one, the day the floor fell out from under me.
Let's back up a bit though and get a bit of perspective on this. I think it is important. Without it there is nothing for a frame of reference.
Back in January of 2007 my love told me her back was hurting. She had stumbled on the ice and I thought it was from that. Later I was to fall off a downhill sled and hurt mine so it wasn't anything that would or should raise concern.
We went through February, March, April and it was not getting really any better. I encouraged, begged and demanded she see someone and sh found a Chiropractor in May and got an appointment. He deduced that it was a muscle injury then a slipped disk. After treating my love for a month without positive results he sugested she see an MD. Additionally a counselor suggested the same. My love promised.
We went on vacation in early July and the wheels ground slowly forward. There was a visit and pain meds, a scheduled X-ray then MRI. Each required a week or so between appointments. The chiropractor continued and the pain increased. She could not wal or climb the stairs.
Finally on Friday July 20, 2007 she could not get up from her desk at work, a regionally famous hospital Vassar Brothers. They rushed her to the ER and told her it was a back spasm and gave her percocet. Drug them up and move them out! The doctor gave many well meaning nods of assention as he and my love decided it was nothing more than a bad back.
The X-ray was not conclusive, the MRI much more so, the mammogram horrifying and the hammer blow deliverd by the CAT scan. Monday we will know more and so we wait.
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