Prostate Cancer update: Charley's back at school and doing okay. It turns out that the biopsy of his prostate showed a tiny bit of much more aggressive cancer than the original biopsy showed. It was very localized and the blood test at one month showed he had no cancer in his body. So that means he was probably right to have his entire prostate removed.
On the other hand, recovery is a lot worse than we had been told by the doctor and his nurse. It's a lot worse than most of our well-wishers predicted. "Oh my uncle, brother, neighbor had that done and it was no problem at all." I think that uncles, brothers and neighbors don't like to complain to people outside their immediate family. That is understandable. But what I don't understand is why the hospital educational system was so misleading. For example, they told us many times that it would be 3 to 6 weeks before he was back at work. He was in no condition to go back to work at 3 weeks. He's a teacher, not a brick layer or something. He does have to stand all day, but he doesn't have to pick up heavy things. Even so there was no way he could go back at 3 weeks.
Even at 4 weeks, it was difficult, but he went back. This was partly because he was worried about work and partly because he was spurred on by the "3-6 weeks" prediction. He figured that he was still at the young end of people who have prostate cancer, so he "should" be on the short end of the recovery spectrum. When he went back to the hospital on Wednesday of week 4, the nurse asked him when he thought he'd be ready to return to work. She was surprised to learn that he was already back. None of the other guys who had the surgery the week he did had returned to work yet. So he IS at the short end of the recovery spectrum, but why in the world did they say 3 - 6 weeks if it's really 4-8 or even 6-10? That's just one example of their overly optimistic predictions. The entire process of recovery has been much more difficult and painful than predicted. Post-surgical catheter care is a whole other story and not a pretty one!
It was actually quite nice to have him home. I wonder how much of this was due to having 3 weeks away from school and how much of it was the shock of facing his own mortality. Whatever the reason, we had a chance to notice that we still really like each other! We spend so much time getting through life that it's hard to take time to notice why we are doing it and with whom we are traveling.
I've known Charley since I was 15 and we've been a couple pretty much since we met. I'm going to be 60 in August, so that's 45 years! He really is my "Life Partner." It was lovely to have the time to talk about that and talk about plans for the future without him jumping up to go to work or to work downstairs on lesson plans and IEPs.
Life is really hard and unpredictable. It's that way for everyone of us. It's easier if you go through it with a friend.
Musings From a Life Transformed by Unconditional Love
Thursday, January 27, 2011
Tuesday, January 25, 2011
I don't know how you do it
I went to the 40th birthday party of a good friend last Saturday. I had so much fun! She is the single mom of a very delightful fourth grader. I always enjoy these two because they obviously have so much fun together.
There were two conversations I particularly enjoyed. One was with a single mom of two active boys and the other was with a step-mom who is writing a book about her experiences navigating the very tricky waters of negotiating child care issues with the ex and her new spouse. I was delighted by the skill and wisdom of both these courageous women.
I had a great conversation yesterday with my wonderful DIL (Ben's wife) about the shock of having a 3 year old. ("Even if you say Puleeeze, no still means no.") She mentioned how much she loves Ben because he gives his time so generously and patiently to their three challenging kids. I remember the struggle of raising Ben. He was never aware that he had changed in any way. In his opinion, he was always exactly the same person he had always been, but annoyed by my failure to "get" him. Meanwhile, I had to scramble to adjust at least annually to this completely new person living in my house with new requirements and challenges for his faint but following mom.
My brother Bil and his wife also have three kids. The last time I visited, I was amazed at the skill with which she juggles, every day, the very different interests and needs of these three individuals. When I talk to Bil, he talks about the stage of development and the needs of each kid in a careful, thoughtful way that shows he is aware of how fast they change and how carefully a good Dad has to pay attention.
I stay home all the time with my adorable Peter Pan who never changes, never grows up and has such a fragile hold on life. We know way too much about medicines and hospitals. We also know all the toys at Target and Toys R Us from infant to about 3 years old because in the last 29 years, we have purchased ALL of them. Some of them twice. Whenever I manage to get out I get such lovely compliments, "You are amazing. I don't know how you do it." Well, right back at you, folks.
I know that every one of these superheros has bad days and days when they doubt their ability to cope with the challenges life has presented them. But they are doing absolutely amazing jobs juggling careers, relationships and the ever changing challenges of child-rearing. I don't know how they do it. I really don't. They are each so incredible.
So hats off to Sue and Emily; to Sara and her family; to the brilliant woman whose name I forgot with the two boys; to Ben, Cher, Tasha, Tahreq and Zora; to Bil, Lisa, Jack, Faith and Will and to everyone else out there who cares about raising children to be responsible adults.
Actually, I do know how we do it. We get out of bed every morning and try again because we love them. Great job!
There were two conversations I particularly enjoyed. One was with a single mom of two active boys and the other was with a step-mom who is writing a book about her experiences navigating the very tricky waters of negotiating child care issues with the ex and her new spouse. I was delighted by the skill and wisdom of both these courageous women.
I had a great conversation yesterday with my wonderful DIL (Ben's wife) about the shock of having a 3 year old. ("Even if you say Puleeeze, no still means no.") She mentioned how much she loves Ben because he gives his time so generously and patiently to their three challenging kids. I remember the struggle of raising Ben. He was never aware that he had changed in any way. In his opinion, he was always exactly the same person he had always been, but annoyed by my failure to "get" him. Meanwhile, I had to scramble to adjust at least annually to this completely new person living in my house with new requirements and challenges for his faint but following mom.
My brother Bil and his wife also have three kids. The last time I visited, I was amazed at the skill with which she juggles, every day, the very different interests and needs of these three individuals. When I talk to Bil, he talks about the stage of development and the needs of each kid in a careful, thoughtful way that shows he is aware of how fast they change and how carefully a good Dad has to pay attention.
I stay home all the time with my adorable Peter Pan who never changes, never grows up and has such a fragile hold on life. We know way too much about medicines and hospitals. We also know all the toys at Target and Toys R Us from infant to about 3 years old because in the last 29 years, we have purchased ALL of them. Some of them twice. Whenever I manage to get out I get such lovely compliments, "You are amazing. I don't know how you do it." Well, right back at you, folks.
I know that every one of these superheros has bad days and days when they doubt their ability to cope with the challenges life has presented them. But they are doing absolutely amazing jobs juggling careers, relationships and the ever changing challenges of child-rearing. I don't know how they do it. I really don't. They are each so incredible.
So hats off to Sue and Emily; to Sara and her family; to the brilliant woman whose name I forgot with the two boys; to Ben, Cher, Tasha, Tahreq and Zora; to Bil, Lisa, Jack, Faith and Will and to everyone else out there who cares about raising children to be responsible adults.
Actually, I do know how we do it. We get out of bed every morning and try again because we love them. Great job!
Saturday, January 01, 2011
Happy New Year
Happy 2011. This is the year that I turn 60 and I have three grandchildren. I think that endows me with certain inalienable rights among which are the right to rebel against certain absurdities. Why we do things is sometimes more important than what we do.
For example, there was this young priest who took over his first parish in northern Minnesota - or maybe it was Saskatchewan. After he celebrated his first Christmas Eve Midnight Vigil, he noticed a certain growing resentment on the part of his rural parishioners. So he went to his deacon and asked him what the trouble was.
"Well frankly, Father, many of us are having trouble getting used to your new ways. We aren't used to these shorter rites." The priest asked him to explain further and the deacon explained, "Well, many of us missed the way the old priest used to bless the church at midnight during the Christmas Eve Vigil."
Bless the church? The young priest had never heard of this, so he went to to see the old priest in the retirement community which was now his home. After an hour or so of discussing various parishioners, their children and cattle, the old priest asked, "And how are you settling in, young man?" This was the opening he had been waiting for and the young priest asked for an explanation of the rite of blessing the church during the Christmas Eve Vigil.
After staring at him blankly a few moments, a smile dawned on the wrinkled old face. "That old church is so cold and drafty!" He explained. "Even in mid-summer I got cold. But Christmas Vigil was the worst! So before I began to celebrate Eucharist, I used to go over to the radiator and warm my hands!"
Or there were three generations of women who passed on family traditions faithfully. As each one got older, her daughter would take over the task of preparing the Christmas Dinner for the extended family. Each mother carefully taught her daughter all the family secret recipes. As the youngest daughter was being inducted into the mysteries, she was told, among other things, that it was important to cut off the end of the Christmas Ham before putting it in the oven. "Why?" she asked, bringing the proceedings to a screeching halt.
"Because you'll ruin it if you don't." Said her mother. "Isn't that right, mom?"
"I don't know," replied the grandmother, "That's just the way it's done."
"But why?" asked the rebellious daughter. "Let's go ask Great-grandmother." So they went out into the living room where Great-grandmother sat in state, knitting, of course, and asked her why it was so important to cut off the end of the Christmas ham.
"Because" she told them, "my old wood burning stove was so small the whole ham didn't fit in."
So back to being almost 60. I'm old enough to start asking why and stop worrying about the "Right way." Well, maybe I've always been a little that way, but I'm going to be a lot MORE that way from now on.
Beginning with knitting. Why do we pull from the center? It's a neat little magic trick that goes wrong about as often as it goes right. But why do we do it? I just spent 40 minutes trying to find an end that didn't come out of the center smoothly. I'm done. The only reasonable reason I can think of for pulling from the center is if I'm knitting with a double strand and only have one ball. Otherwise, I'm knitting from the outside from now on.
If I want magic, I'll buy a Fushigi.
For example, there was this young priest who took over his first parish in northern Minnesota - or maybe it was Saskatchewan. After he celebrated his first Christmas Eve Midnight Vigil, he noticed a certain growing resentment on the part of his rural parishioners. So he went to his deacon and asked him what the trouble was.
"Well frankly, Father, many of us are having trouble getting used to your new ways. We aren't used to these shorter rites." The priest asked him to explain further and the deacon explained, "Well, many of us missed the way the old priest used to bless the church at midnight during the Christmas Eve Vigil."
Bless the church? The young priest had never heard of this, so he went to to see the old priest in the retirement community which was now his home. After an hour or so of discussing various parishioners, their children and cattle, the old priest asked, "And how are you settling in, young man?" This was the opening he had been waiting for and the young priest asked for an explanation of the rite of blessing the church during the Christmas Eve Vigil.
After staring at him blankly a few moments, a smile dawned on the wrinkled old face. "That old church is so cold and drafty!" He explained. "Even in mid-summer I got cold. But Christmas Vigil was the worst! So before I began to celebrate Eucharist, I used to go over to the radiator and warm my hands!"
Or there were three generations of women who passed on family traditions faithfully. As each one got older, her daughter would take over the task of preparing the Christmas Dinner for the extended family. Each mother carefully taught her daughter all the family secret recipes. As the youngest daughter was being inducted into the mysteries, she was told, among other things, that it was important to cut off the end of the Christmas Ham before putting it in the oven. "Why?" she asked, bringing the proceedings to a screeching halt.
"Because you'll ruin it if you don't." Said her mother. "Isn't that right, mom?"
"I don't know," replied the grandmother, "That's just the way it's done."
"But why?" asked the rebellious daughter. "Let's go ask Great-grandmother." So they went out into the living room where Great-grandmother sat in state, knitting, of course, and asked her why it was so important to cut off the end of the Christmas ham.
"Because" she told them, "my old wood burning stove was so small the whole ham didn't fit in."
So back to being almost 60. I'm old enough to start asking why and stop worrying about the "Right way." Well, maybe I've always been a little that way, but I'm going to be a lot MORE that way from now on.
Beginning with knitting. Why do we pull from the center? It's a neat little magic trick that goes wrong about as often as it goes right. But why do we do it? I just spent 40 minutes trying to find an end that didn't come out of the center smoothly. I'm done. The only reasonable reason I can think of for pulling from the center is if I'm knitting with a double strand and only have one ball. Otherwise, I'm knitting from the outside from now on.
If I want magic, I'll buy a Fushigi.
Sunday, December 19, 2010
All Right
Yesterday Charley was in so much pain he took 2 narcotic pills (maximum dose) and he was bleeding rather profusely outside his catheter. He can't control it, so I've got blood drops all over the floor. There was such a quantity of blood and pain that the nurse advised us to go to the ER. Barb H generously agreed to come over and sit with Sam while we went. She not only sat with Sam, she gave him his treatments twice, fed him, and came up with some good ideas for taking care of him. Oh and washed dishes. What a rare and wonderful person she is!
Anyway, as we drove to the hospital, Charley knelt in the back seat, rocking to control the pain and singing "He's A Ridiculous Man". He sounds a little bit like Bono! That was a moment to remember. I was driving, trying not to have an accident or hit too many potholes, and listening to my poor, pain filled spouse sing amazingly well. I could live in that moment, unwrapping it, for a long time!
Turns out that his catheter was clogged, and he's having bladder spasms. Neither situation is really very serious, it's just that we've never dealt with this situation before and we over react, apparently. Once again, we see the difference between the medical point of view and the experience of the patient!!!! They think everything is going well and we think this is one incredibly bad experience!
Anyway, as we drove to the hospital, Charley knelt in the back seat, rocking to control the pain and singing "He's A Ridiculous Man". He sounds a little bit like Bono! That was a moment to remember. I was driving, trying not to have an accident or hit too many potholes, and listening to my poor, pain filled spouse sing amazingly well. I could live in that moment, unwrapping it, for a long time!
Turns out that his catheter was clogged, and he's having bladder spasms. Neither situation is really very serious, it's just that we've never dealt with this situation before and we over react, apparently. Once again, we see the difference between the medical point of view and the experience of the patient!!!! They think everything is going well and we think this is one incredibly bad experience!
Well-wishers keep telling me "It's going to be all right." What does that mean exactly? When is it going to be all right? What is this "it" that's going to be all right?
Actually, my past holds lots of moments. They fall into many categories like absolutely wonderful, pretty shockingly awful, sad, painful, joyful, funny and all right. I'm pretty certain my future holds a similar list of moments.
In fact, today, this moment, "It's" all of the above. Most moments are. I think that's why people recommend we learn to "live in the moment". This moment is so complex that, if I focus on it with all I've got, I still won't realize all of it before it's over and the next moment begins. This moment holds the whole world. And that is riches enough for anyone.
Thursday, December 16, 2010
Caregiving
I'm running an ICU here. I've been neglecting Sam while I take care of Charley and Sam is in not so good shape. Charley continues to be in pretty bad shape and I've got blood and urine soaked rags everywhere. He's like a new puppy - dripping bloody urine all over the floors. Thank goodness we have all hardwood floors! I have to add that I'm so very grateful for the support I'm getting. The surgeon's nurse has a direct line and is very nice about talking to me whenever we're worried about something and the guys I get Sam's allergy supplies from have spent a lot of time on the phone giving me advice about keeping this place sanitized and disinfected. (Aller-Caire The Allergy Store 1-800-547-8095)
Last night I was in tears because it took me 25 hours to get Charley's pain medicine prescription filled - problem after problem, long story - and then he didn't want to take it. So I got him some ibuprofen and he took some baby aspirin. And the nurse said both of those were wrong - they thin his blood and he won't heal. So I had to go back to the pharmacy and get acetaminophen. Charley said, "You aren't taking care of yourself. You have to take better care of yourself." So I skipped Sam's last breathing routine and went to bed.
This morning Charley was mad at me because Sam had a bad night and because he had a LOT of blood everywhere. It reminded me of something - I kept trying to remember what. Then I finally remembered. He reminds me of ME - when I was in labor!!!! Cranky, scared and easily confused. Actually he kind of goes back and forth between sort of labor pains and really bad menstrual cramps. So I got him some of those pads that you put on your belly and they warm up. This morning the nurse said the blood is from the aspirin yesterday and he should "TAKE THE NARCOTIC." If he doesn't maybe I will!
But today's a new day and I did get a good night's sleep. I just have to stay calm and do absolutely NOTHING extra. (Well, except knit.) Everyone keeps saying, "I don't know how you do it." Well, I don't do it very well. I do it pretty much the way anyone else would do it. I just do what I can and then hope no one dies.
The catheter comes out next Thursday and then we'll see how incontinent Charley is. I haven't reminded him that he will continue to be incontinent AFTER they remove the catheter - I don't think he could stand to hear that now. But it WILL get better as time goes by...
Last night I was in tears because it took me 25 hours to get Charley's pain medicine prescription filled - problem after problem, long story - and then he didn't want to take it. So I got him some ibuprofen and he took some baby aspirin. And the nurse said both of those were wrong - they thin his blood and he won't heal. So I had to go back to the pharmacy and get acetaminophen. Charley said, "You aren't taking care of yourself. You have to take better care of yourself." So I skipped Sam's last breathing routine and went to bed.
This morning Charley was mad at me because Sam had a bad night and because he had a LOT of blood everywhere. It reminded me of something - I kept trying to remember what. Then I finally remembered. He reminds me of ME - when I was in labor!!!! Cranky, scared and easily confused. Actually he kind of goes back and forth between sort of labor pains and really bad menstrual cramps. So I got him some of those pads that you put on your belly and they warm up. This morning the nurse said the blood is from the aspirin yesterday and he should "TAKE THE NARCOTIC." If he doesn't maybe I will!
But today's a new day and I did get a good night's sleep. I just have to stay calm and do absolutely NOTHING extra. (Well, except knit.) Everyone keeps saying, "I don't know how you do it." Well, I don't do it very well. I do it pretty much the way anyone else would do it. I just do what I can and then hope no one dies.
The catheter comes out next Thursday and then we'll see how incontinent Charley is. I haven't reminded him that he will continue to be incontinent AFTER they remove the catheter - I don't think he could stand to hear that now. But it WILL get better as time goes by...
Wednesday, December 15, 2010
Prostate Surgery
The really important thing to understand, when you are offered DaVinci Prostate surgery, is that when they talk about how simple and easy and almost fun it is - they are talking about the SURGEON'S experience. THEY have a great time. Doing this surgery is more fun (for them) than playing Donkey Kong. What the DON'T tell you is that they blow your stomach up with CO2 so they can see your insides better and THEN they paralyze your bowels so you can't get rid of it. Recovery is really, really painful. Then (while your manly man iswhimpering in pain) they tell you that the catheter they have already put inside you will cause bladder cramps which may be mild or excruciating. "Just expect that". (Query: Will Midol help? I went out and purchased some of those menstrual cramp pads that warm up. Bladder is in the same region as the uterus, maybe the same stuff I used for menstrual cramps will help. I tried getting him to do childbirth breathing when the pain was really intense, but he couldn't focus.)
I brought Charley home late last night. He was very nervous about coming home. The pain has been so intense that, if a CIA operative had walked into the room, he would have gladly confessed to killing Lincoln, Kennedy, MLK AND Lennon.
The down side is that this at-home "hospital ward" has no shifts and only one nurse - me. The upside is that I don't get distracted and I give pain meds on time. (When I got to the hospital last night at 7:30, I asked around and discovered the last time he'd had meds was 11 am - he was very fretful and not thinking straight because of the pain.) So Charley is doing much better at home because I'm making him take his pain meds and stool softeners. Except for bullying him regarding meds, I'm letting him do whatever he feels like doing. He is going up and down stairs to get what he wants, managing his own catheter and getting himself dressed. He is also finding out what things hurt and what things he can do. Sam is better, too. He didn't get enough treatments the last two days because I was running to and from the hospital and he didn't really like having his parents missing. Those two ladies were not great substitutes as far as he was concerned. (Personally, I think they were close relatives of angels.) They kept watching the WRONG shows on HIS tv. He was polite and charming to them, but once they left he let me know that he wasn't very happy. A mother's place is in the home, waiting on him.
So I'm actually doing ok, too. It is too cold to go outside anyway and we're just focused on healing and knitting. It was absolutely great to have him home again and I slept really well. It's cozy and intimate and we're all three really aware of how important we are to each other.
I'm going to put in a PeaPod order later today, so we're okay food wise. So really we need prayers and peace. You could add my hearing aides to your prayer list: I have lost them (They HAVE to be here in the house someplace, I just got distracted) And praise: yesterday I hit a really big pot hole which blew out my tire and bent the rim, but I'm okay and I'm driving Charley's car until we can focus on fixing that. I hit the pot hole right next to a shell gas station and they patched it up enough for me to get home. There are TWO tire places in our alley! So I will be able to get it fixed without driving it again!
I didn't manage to get all the Christmas presents in the mail yet, but the last few are all boxed up and I'll get to it asap.
Tuesday, November 16, 2010
Parenting a Child with Cognitive Issues
I was just watching part of a movie called "A Child is Waiting". I didn't see much of it because my child was waiting for me to change the channel. But I did hear this angry parent instructing his autistic child's caregiver to "just give him everything he wants and make him happy" because he is has a cognitive level of a five year old.
I just have a few things to say about that attitude.
First of all, if your child has the cognitive level of a five year old, I envy you. You can talk to your child and get an answer.
But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time. So you probably want to look into what are the best parenting techniques for a 5 year old. As far as I know, "giving them everything they want" is light years removed from "making them happy"! Practically no one enjoys being around an over-indulged 5 year old! An over-indulged 5 year old in the body of a 50 year old is a big problem.
5 year olds need boundaries, security and new challenges. They need to know that they can make mistakes and someone will still think they are terrific. They need to know how to obey and cooperate and help to feel important.
But really, people with cognitive disabilities are never "stuck" at any age. That's just someone's short hand method of describing a person's limitations. Who wants to be described by their limitations? Raise your hands. What? No one?
I thought not.
People continue to change throughout their lives. It's nice if there's somebody around to notice. Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years. In that time there have been so many changes and delightful discoveries. He has met and loved so many people and grieved their loss. He has been depressed and elated and everything in between. He is curious about everything and loves to investigate. He is a precious valued member of whatever community he enters. And he needs me to take care of and challenge him.
I need him. I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed. He is part of a family and he is part of a community and he is wise and funny and precious.
Which brings me to what the caregiver in the movie said in response. "The child does not know he is a tragedy. Maybe the tragedy is in you." Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies. "Normal" is kind of a myth anyway. We are so much more than what we know. Getting an advanced degree in college and a high paying job are not guarantees of a happy life.
Tragedy is a society that has upside down values. We should celebrate the people we love and delight in discovering their unique abilities. That doesn't mean life will be easy. Most lives are not. That's something we can call "normal".
I just have a few things to say about that attitude.
First of all, if your child has the cognitive level of a five year old, I envy you. You can talk to your child and get an answer.
But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time. So you probably want to look into what are the best parenting techniques for a 5 year old. As far as I know, "giving them everything they want" is light years removed from "making them happy"! Practically no one enjoys being around an over-indulged 5 year old! An over-indulged 5 year old in the body of a 50 year old is a big problem.
5 year olds need boundaries, security and new challenges. They need to know that they can make mistakes and someone will still think they are terrific. They need to know how to obey and cooperate and help to feel important.
But really, people with cognitive disabilities are never "stuck" at any age. That's just someone's short hand method of describing a person's limitations. Who wants to be described by their limitations? Raise your hands. What? No one?
I thought not.
People continue to change throughout their lives. It's nice if there's somebody around to notice. Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years. In that time there have been so many changes and delightful discoveries. He has met and loved so many people and grieved their loss. He has been depressed and elated and everything in between. He is curious about everything and loves to investigate. He is a precious valued member of whatever community he enters. And he needs me to take care of and challenge him.
I need him. I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed. He is part of a family and he is part of a community and he is wise and funny and precious.
Which brings me to what the caregiver in the movie said in response. "The child does not know he is a tragedy. Maybe the tragedy is in you." Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies. "Normal" is kind of a myth anyway. We are so much more than what we know. Getting an advanced degree in college and a high paying job are not guarantees of a happy life.
Tragedy is a society that has upside down values. We should celebrate the people we love and delight in discovering their unique abilities. That doesn't mean life will be easy. Most lives are not. That's something we can call "normal".
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