On Christmas day I removed my final Fentanyl patch today is third day without it and it is a whorl wind dealing with the withdrawal symptoms, sick to my stomach, can’t sleep, and I am restless and don’t know what to do with myself. Each day it gets a little better no matter what there is no way I am putting on another Fentanyl patch. If you look up Fentanyl up on the Internet there are horror stories about people trying and not being able to get off it. I will make it. I have Vicodin to get me over the hump while I get over the withdrawal symptoms from the Fentanyl I hope a week does but how ever long it takes I will make it. A full night sleep would be nice, I am not sure the last time I slept all night, you can be sure that is one thing I look forward to.
I am starting to try food out a few bites of scrambled eggs, pudding; eating food is the next challenge.
My tongue, throat and mouth still hurt not like it did but it still hurts. It is still the effects of the radiation and it has been 3 weeks since I had radiation. Dr. Kwan my radiation oncologist told Patty and me it could take two months to recover from the radiation effects. I certainly hope not. I wish there was a way to speed up the process.
The next steps are follow-up visits to the doctors in January. Back to work on February 2nd which I can not wait for. Sometime in late February or March I will have a PET scan and that will tell the story if I am cancer free. If anything shows up on the Scan I will have surgery to remove it if it is clear then just regular follow-ups. Thinking about this is just a little too much for me right now so I will wait until the time comes.
Happy New Year to all of you and your families, God bless you all I hope 2009 is a healthy and healing year for all of us.
I for one will continue to Fight On!
Love Michael
Monday, December 29, 2008
Tuesday, December 23, 2008
Cancer Thoughts 18
From no updates in months to two updates in a week, it has been a good week so far.
First Patty and I walked Monday night not far but far enough, and then we followed it up by walking just a little farther tonight. It is not much but it is a start and up to me to continue it the more I walk, the farther I walk, the stronger I become and that has got to help. You are walking with me, not in person but in spirit we have started with a block did and then a block and little bit.
At the start when I first started writing the Blog I used it as motivation to stay strong as long as I could. I think about what I want to say and then I write it down and send it out to you. Now I have told someone that I would do something and I feel obligated to do it. You are all walking with me, I have a goal; two laps around the complex which is 1.4 miles once that is done for 5 nights in a row then I will go from there.
The second thing is I am on my second eight ounce bottle of water today, it has taken all day but I am swallowing water and that is a big deal when I can do that without it hurting my throat then I know I can start eating and that is key to my recovery. Food and water eating to live, I am not sure when that will start but I have to believe it will.
I feel very positive today and wanted to share that with you. Merry Christmas to Everyone,. Sunday night a lot of my neighbors came to our house caroling it was wonderful thank you for being there for me, for letting me know I am not going through this alone.
Be well and I still choose to Fight On!
First Patty and I walked Monday night not far but far enough, and then we followed it up by walking just a little farther tonight. It is not much but it is a start and up to me to continue it the more I walk, the farther I walk, the stronger I become and that has got to help. You are walking with me, not in person but in spirit we have started with a block did and then a block and little bit.
At the start when I first started writing the Blog I used it as motivation to stay strong as long as I could. I think about what I want to say and then I write it down and send it out to you. Now I have told someone that I would do something and I feel obligated to do it. You are all walking with me, I have a goal; two laps around the complex which is 1.4 miles once that is done for 5 nights in a row then I will go from there.
The second thing is I am on my second eight ounce bottle of water today, it has taken all day but I am swallowing water and that is a big deal when I can do that without it hurting my throat then I know I can start eating and that is key to my recovery. Food and water eating to live, I am not sure when that will start but I have to believe it will.
I feel very positive today and wanted to share that with you. Merry Christmas to Everyone,. Sunday night a lot of my neighbors came to our house caroling it was wonderful thank you for being there for me, for letting me know I am not going through this alone.
Be well and I still choose to Fight On!
Sunday, December 21, 2008
Cancer Thoughts 15
It has been a while since I sent anything out; I have written some updates but just have not sent them, they were too negative and were the same complaints over and over.
But there is an update all the treatments have been completed for the last 2 weeks. The side effects of the radiation are still with me, especially the damage to my tongue and throat that is still causing me some issues. Patty and I met with my oncologist toady and he said they will heal it will just take some time.
The issues I have now are from pain medication they are giving me to control the pain. We saw the Surgeon and my oncologist last week and they were both encouraging that they thought everything was going as it should be.
It is Saturday and I am off of everything but the Fentanyl patch and the Vicodin and that is changing fast. I took the Vicodin every 4 hours without fail, now I am using it two or three times a day once the sores inside my mouth, throat and on my tongue heal we will eliminate the Fentanyl completely and use the Vicodin as needed for a few days. I am hoping to be medicine free by New Year’s Day and then driving again the second week of January. That is my plans, but I have found that my plans do not always work out.
For all of this to happen I have to be able to swallow water and liquids first which I can do a little at this time. I will also have to be able to eat food by mouth. The doctors will not give me a time line when they think this will happen but all of them have told me when my mouth, tongue and throat heal getting off the pain medication, drinking, and eating small amounts of bland food will happen along with it.
When this all started I weighed 250 pounds and was a XXL now I am wearing a size Large and 200 pounds, the weight loss is amazing, the doctor does not want me to loose any more weight and I don’t either.
Today is Sunday, December 21, 2008 it is about 3:00 in the afternoon I have had no Vicodin today and I am hoping to get through the day without it. One more baby step on the way to recovery, for now we are taking it as it comes and that seems to be a minute at a time.
When this all started exercise was part of my daily routine, as the side effects of the radiation and chemo took there toll I could no longer exercise. I think that is turning around now and we Patty and I are going to start walking again; I will let you know next week how that goes.
Be well I still choose to Fight On.
Love Michael
But there is an update all the treatments have been completed for the last 2 weeks. The side effects of the radiation are still with me, especially the damage to my tongue and throat that is still causing me some issues. Patty and I met with my oncologist toady and he said they will heal it will just take some time.
The issues I have now are from pain medication they are giving me to control the pain. We saw the Surgeon and my oncologist last week and they were both encouraging that they thought everything was going as it should be.
It is Saturday and I am off of everything but the Fentanyl patch and the Vicodin and that is changing fast. I took the Vicodin every 4 hours without fail, now I am using it two or three times a day once the sores inside my mouth, throat and on my tongue heal we will eliminate the Fentanyl completely and use the Vicodin as needed for a few days. I am hoping to be medicine free by New Year’s Day and then driving again the second week of January. That is my plans, but I have found that my plans do not always work out.
For all of this to happen I have to be able to swallow water and liquids first which I can do a little at this time. I will also have to be able to eat food by mouth. The doctors will not give me a time line when they think this will happen but all of them have told me when my mouth, tongue and throat heal getting off the pain medication, drinking, and eating small amounts of bland food will happen along with it.
When this all started I weighed 250 pounds and was a XXL now I am wearing a size Large and 200 pounds, the weight loss is amazing, the doctor does not want me to loose any more weight and I don’t either.
Today is Sunday, December 21, 2008 it is about 3:00 in the afternoon I have had no Vicodin today and I am hoping to get through the day without it. One more baby step on the way to recovery, for now we are taking it as it comes and that seems to be a minute at a time.
When this all started exercise was part of my daily routine, as the side effects of the radiation and chemo took there toll I could no longer exercise. I think that is turning around now and we Patty and I are going to start walking again; I will let you know next week how that goes.
Be well I still choose to Fight On.
Love Michael
Sunday, November 2, 2008
Patty's Cancer Thoughts
http://cancerthoughts-sealbeachmichael.blogspot.com/
I write this because I am not sure that Michael will be able to write this week. You see since has last chemotherapy treatment this past Tuesday, he has been so very sick and so very tired. My heart is breaking for him. Sometime I see his smile come through, but usually I just see sadness in his face. This is a face that used to smile, but cancer changes that. I know this is only temporary I am counting down the days until this treatment is done. Because then each day should get a little brighter for him, a little less pain and my old Michael will return. Despite all the pain and sickness this cancer brings to him I am writing this to tell you what a caring person he is and what this man who is so sick did for ME today…. for the past two weeks he has talked about going to a support Group at USC campus. I thought that would be great for him and so of course I would take him. But his week came and he was just so very ill, I felt we would not be able to make it to the support group this time. The last 3 nights have been the worst; we have had no sleep only a few hours here and there. He has been sick to his stomach even when we have to drive to treatment he is sick the entire car ride; we have become very much attached to that little pink pail. This morning he said he still wanted to go to the support group. I asked are you sure you are up to it and he said yes. So I ran around got him his feeding since he hasn’t been able to eat much the last few days it was important that he get some nutrition into him. I went and got gas, tried to grab a slice of toast for myself and help Michael get going. I must admit as I am getting us ready to go I am thinking God I would just like to stay home there is no radiation today, maybe I could get an hour sleep, or maybe I could just watch some bad tv show and drink coffee, I felt like I really didn’t want to go. Not to mention I had no idea where we had to go so Michael would need to help by telling me what freeways to get on and off – we managed and got to USC campus in time for the meeting. On the drive there I watched Michael and I thought to myself you know he really is my hero because if I felt like he does I know there would be no way in heck I would drive all this way to listen to some people I don’t know talk, I would pull the covers over my head and just sleep, but that is not what he does as bad as he felt this was he knew important for his recovery.
As we arrived we were greeted by many lovely people all having some type of neck, throat or head cancer. As we sat down the meeting began and they told us today’s meeting is about thanking our caregivers. I immediately thought G r e a t… I needed this to be about him and cancer and how people like with cancer feel, to share their stories, not about the caregiver! I turned to Michael and said sorry, but he knew this was what the meeting was about, you see he had been exchanging emails with some of the persons who conduct the support group. The caregivers were given a potted flower and they went around the room saying thank you to each of us. Michael had written a thank you to me which he read and there was not a dry eye. It was very emotional and very touching. These people are very special at these support groups and they know just how you feel and what you are going through. It was much better than some bad tv
You see in spite of the pain and sickness Michael is going through, no matter how sick he has been this week. He got up this morning, must have forced himself to go to that meeting, just because he is worried about me is concerned that I am ok and wanted to let me know how much he love me. I cannot put into words how touched I was, and felt a little guilty for thinking I wanted to just stay home today. A very good friend of mine once told me that “Michael was my big angle, here to take care of me” and I truly saw that today.
I am also touch each day by all the people who touch our lives with emails, phone calls, cards, prayer… Thank you does not express how I feel.
Patty
I write this because I am not sure that Michael will be able to write this week. You see since has last chemotherapy treatment this past Tuesday, he has been so very sick and so very tired. My heart is breaking for him. Sometime I see his smile come through, but usually I just see sadness in his face. This is a face that used to smile, but cancer changes that. I know this is only temporary I am counting down the days until this treatment is done. Because then each day should get a little brighter for him, a little less pain and my old Michael will return. Despite all the pain and sickness this cancer brings to him I am writing this to tell you what a caring person he is and what this man who is so sick did for ME today…. for the past two weeks he has talked about going to a support Group at USC campus. I thought that would be great for him and so of course I would take him. But his week came and he was just so very ill, I felt we would not be able to make it to the support group this time. The last 3 nights have been the worst; we have had no sleep only a few hours here and there. He has been sick to his stomach even when we have to drive to treatment he is sick the entire car ride; we have become very much attached to that little pink pail. This morning he said he still wanted to go to the support group. I asked are you sure you are up to it and he said yes. So I ran around got him his feeding since he hasn’t been able to eat much the last few days it was important that he get some nutrition into him. I went and got gas, tried to grab a slice of toast for myself and help Michael get going. I must admit as I am getting us ready to go I am thinking God I would just like to stay home there is no radiation today, maybe I could get an hour sleep, or maybe I could just watch some bad tv show and drink coffee, I felt like I really didn’t want to go. Not to mention I had no idea where we had to go so Michael would need to help by telling me what freeways to get on and off – we managed and got to USC campus in time for the meeting. On the drive there I watched Michael and I thought to myself you know he really is my hero because if I felt like he does I know there would be no way in heck I would drive all this way to listen to some people I don’t know talk, I would pull the covers over my head and just sleep, but that is not what he does as bad as he felt this was he knew important for his recovery.
As we arrived we were greeted by many lovely people all having some type of neck, throat or head cancer. As we sat down the meeting began and they told us today’s meeting is about thanking our caregivers. I immediately thought G r e a t… I needed this to be about him and cancer and how people like with cancer feel, to share their stories, not about the caregiver! I turned to Michael and said sorry, but he knew this was what the meeting was about, you see he had been exchanging emails with some of the persons who conduct the support group. The caregivers were given a potted flower and they went around the room saying thank you to each of us. Michael had written a thank you to me which he read and there was not a dry eye. It was very emotional and very touching. These people are very special at these support groups and they know just how you feel and what you are going through. It was much better than some bad tv
You see in spite of the pain and sickness Michael is going through, no matter how sick he has been this week. He got up this morning, must have forced himself to go to that meeting, just because he is worried about me is concerned that I am ok and wanted to let me know how much he love me. I cannot put into words how touched I was, and felt a little guilty for thinking I wanted to just stay home today. A very good friend of mine once told me that “Michael was my big angle, here to take care of me” and I truly saw that today.
I am also touch each day by all the people who touch our lives with emails, phone calls, cards, prayer… Thank you does not express how I feel.
Patty
Tuesday, October 28, 2008
Cancer Thoughts 14
http://cancerthoughts-sealbeachmichael.blogspot.com/
I usually just sit down and start writing and the words flow, I write about what happened, how I feel and the words come out. I made the decision to try and just write about positive stuff. To limit how and what I think seems to have created writers block. Wikipedia defines Writer's block as a phenomenon involving temporary loss of ability to begin or continue writing, usually due to lack of inspiration or creativity, I think I just need to start writing and see what come out and just tell my story, which seems to change day to day and sometimes hour to hour depending on how I feel, but I think everyone must has mood swings, cancer seems intensify those mood swings.
Chemo showed me its bad side over the weekend I think I am throwing up more. There are times when I feel like I can’ move, times when I really do not care at all and all I want to do is sleep, in-between all of that I feel OK.
It is Tuesday so that makes it chemo day, I just got home for radiation and am I having lunch, I think I know how a pet feels now who has a good pet owner, I get the same thing every day for every meal, I have to admit I am not hungry so what more can you ask for. I have the same schedule, wake up and Patty has my breakfast ready, the exact same thing I had the day before, get up shave not much to shave since I have lost all of my whisker’s except for my sideburns, Patty cleans the area around where my feeding tube goes into my stomach. If it is chemo day I take the drugs for chemo, if not then straight to my chair and watch TV and wait for 10:15 at which time I go to radiation, we are home by 11:30 or so and lunch. I have the same thing as breakfast. On Chemo days at 1:00 we go to go chemo, Patty drops me off and I call about 30 minutes before I am done and she comes and picks me up and then home for the night.
Now the good part comes dinner, I can’t wait for dinner I just know it is going to be the best, wait oh my can it be? No it is just like all the other meals, did I tell you it is filling? Somewhere between 7 and 8 we walk, Patty trying to limit how far we go, me pushing to go farther. I told you it is kind of like a dog’s life, the only difference sometimes I go by myself and then I go and go and then go home. Patty worries about me pushing myself to hard and I worry about not pushing myself hard enough. Her problem is she thinks like woman and a caregiver. She thinks my problem is I think like a man. Imagine that a woman thinking different from a man, some things never change.
Please do not think I am treated like a pet, but it seemed funny to me when I draw all the comparisons and they don’t like to leave me alone too much. Seriously one day our Krista, Justin, Madison, Logan and Landon came by and Patty was out to dinner with her sister Sandy. Now Madison is 6 and when they were getting ready to leave she told me and her mom and dad that her daddy was not leaving and he would stay until Patty and her Granny got back, She calls me Buddy and I had to tell her Buddy doesn’t need a babysitter, her daddy left with her and the family but she made sure Patty got an ear full, it was sweet coming from a 6 year old, what can I say, it is dog’s life.
November 4th is 7 days from now, if I can vote so can you, be well. I still choose to Fight on.
Michael
I usually just sit down and start writing and the words flow, I write about what happened, how I feel and the words come out. I made the decision to try and just write about positive stuff. To limit how and what I think seems to have created writers block. Wikipedia defines Writer's block as a phenomenon involving temporary loss of ability to begin or continue writing, usually due to lack of inspiration or creativity, I think I just need to start writing and see what come out and just tell my story, which seems to change day to day and sometimes hour to hour depending on how I feel, but I think everyone must has mood swings, cancer seems intensify those mood swings.
Chemo showed me its bad side over the weekend I think I am throwing up more. There are times when I feel like I can’ move, times when I really do not care at all and all I want to do is sleep, in-between all of that I feel OK.
It is Tuesday so that makes it chemo day, I just got home for radiation and am I having lunch, I think I know how a pet feels now who has a good pet owner, I get the same thing every day for every meal, I have to admit I am not hungry so what more can you ask for. I have the same schedule, wake up and Patty has my breakfast ready, the exact same thing I had the day before, get up shave not much to shave since I have lost all of my whisker’s except for my sideburns, Patty cleans the area around where my feeding tube goes into my stomach. If it is chemo day I take the drugs for chemo, if not then straight to my chair and watch TV and wait for 10:15 at which time I go to radiation, we are home by 11:30 or so and lunch. I have the same thing as breakfast. On Chemo days at 1:00 we go to go chemo, Patty drops me off and I call about 30 minutes before I am done and she comes and picks me up and then home for the night.
Now the good part comes dinner, I can’t wait for dinner I just know it is going to be the best, wait oh my can it be? No it is just like all the other meals, did I tell you it is filling? Somewhere between 7 and 8 we walk, Patty trying to limit how far we go, me pushing to go farther. I told you it is kind of like a dog’s life, the only difference sometimes I go by myself and then I go and go and then go home. Patty worries about me pushing myself to hard and I worry about not pushing myself hard enough. Her problem is she thinks like woman and a caregiver. She thinks my problem is I think like a man. Imagine that a woman thinking different from a man, some things never change.
Please do not think I am treated like a pet, but it seemed funny to me when I draw all the comparisons and they don’t like to leave me alone too much. Seriously one day our Krista, Justin, Madison, Logan and Landon came by and Patty was out to dinner with her sister Sandy. Now Madison is 6 and when they were getting ready to leave she told me and her mom and dad that her daddy was not leaving and he would stay until Patty and her Granny got back, She calls me Buddy and I had to tell her Buddy doesn’t need a babysitter, her daddy left with her and the family but she made sure Patty got an ear full, it was sweet coming from a 6 year old, what can I say, it is dog’s life.
November 4th is 7 days from now, if I can vote so can you, be well. I still choose to Fight on.
Michael
Thursday, October 23, 2008
Cancer Thoughts 13
Joseph Fort Newton said “We cannot tell what may happen to us in the strange medley of life. But we can decide what happens in us, how we take it, what we do with it-and that is what really counts in the end”.
My stepson Rick loaned me a book of quotations entitle “be the difference”, he gave this to me after he found out I have cancer and I know this is a special book to him, as his mother gave it to him when he was going through a personal crisis. I read this book daily and always seem to find inspiration and things to think about when I read it.
After reading the quote by Newton, it occurred to me, that writing and journaling is my attempt to make the decision to not let cancer define me. I recently heard Christina Applegate say “I am not a victim”; now in the last two months I can not count the number of times I have said that to someone, and I will say it again I am not a victim, I will not be victim.
Life is to short, I have been given a 5 month time out and I am 2 months into it, cancer may have its way me right now, and if cancer was a person it would be taunting me, telling me you think I am bad well look what your two best friends chemo and radiation is doing to you. I just made you sick they are doing there best to kill you. No cancer they are killing you and no matter how bad it seems we are winning and you are loosing, one day, one cell at a time.
I know I am not the first person to go through this, and I refuse to fight this battle silently. This is personal I can not be quite, I will not be quite.
It has become my personal mission, to make cancer personal to let others know they are not a victim, they must speak out. Everyone knows someone who has cancer, but you don’t really know them, everyone talks about cancer, about find a cure, pink ribbons, breast cancer and fight against cancer.
The first day, Patty and I found out, I told Patty, I don’t want to talk to anyone, no phone calls, no visitors, don’t talk to me about this. But then a few days latter I knew that would not be possible for me to hide from this, I had to talk about it to share my fears, to share my experiences, and I think that one decision has made this battle easier, Patty and I are not alone we are all in this battle and I know you are all in it with me. During this process my life is an open book, I do not want to hide from this, but to share it, expose the good, the bad and the pain. It all goes into who I am I will not let cancer define who I am, it will have a roll, but where and when I can I will be the leader. I will be my own best friend, I will follow my treatment plan and if I fail it will not be because I didn’t try. I eat well 2000 Calories a day, you can do the math 250 calories of well balance nutrition in each can, three in the morning, three in the afternoon and two at night 8 cans x 250 calories = 2000 calories, add water, sit back in the recliner and relax and watch as it disappears down the feeding tube into my stomach, eating to live not living to eat. Add water, an hour a day of exercise, you may call it a slow walk I call it exercise. Shower, shave each day and be on time for all of my appointments, I have never missed a treatment unless a doctor said no not today.
They want me to drink water through the mouth, but that extremely hard to do, a sip of water is hard to swallow and the pills are almost impossible and they are very small, if there anything I can try harder at swallowing the water. It is easy to get lazy even with this, it is so much easier to just pour the bottle of water down my feeding tube into my stomach and no pain involved. I like it when pain is optional and not mandatory, what I need to learn to do it get tough and go with the pain a little more.
It is 5:30AM and I am going for a walk, I am not sure what the day has in store for me, but I am getting off on a good start, I am beating the sun up and will be outside to say good morning when it arrives.
I still choose to Fight On.
Michael
My stepson Rick loaned me a book of quotations entitle “be the difference”, he gave this to me after he found out I have cancer and I know this is a special book to him, as his mother gave it to him when he was going through a personal crisis. I read this book daily and always seem to find inspiration and things to think about when I read it.
After reading the quote by Newton, it occurred to me, that writing and journaling is my attempt to make the decision to not let cancer define me. I recently heard Christina Applegate say “I am not a victim”; now in the last two months I can not count the number of times I have said that to someone, and I will say it again I am not a victim, I will not be victim.
Life is to short, I have been given a 5 month time out and I am 2 months into it, cancer may have its way me right now, and if cancer was a person it would be taunting me, telling me you think I am bad well look what your two best friends chemo and radiation is doing to you. I just made you sick they are doing there best to kill you. No cancer they are killing you and no matter how bad it seems we are winning and you are loosing, one day, one cell at a time.
I know I am not the first person to go through this, and I refuse to fight this battle silently. This is personal I can not be quite, I will not be quite.
It has become my personal mission, to make cancer personal to let others know they are not a victim, they must speak out. Everyone knows someone who has cancer, but you don’t really know them, everyone talks about cancer, about find a cure, pink ribbons, breast cancer and fight against cancer.
The first day, Patty and I found out, I told Patty, I don’t want to talk to anyone, no phone calls, no visitors, don’t talk to me about this. But then a few days latter I knew that would not be possible for me to hide from this, I had to talk about it to share my fears, to share my experiences, and I think that one decision has made this battle easier, Patty and I are not alone we are all in this battle and I know you are all in it with me. During this process my life is an open book, I do not want to hide from this, but to share it, expose the good, the bad and the pain. It all goes into who I am I will not let cancer define who I am, it will have a roll, but where and when I can I will be the leader. I will be my own best friend, I will follow my treatment plan and if I fail it will not be because I didn’t try. I eat well 2000 Calories a day, you can do the math 250 calories of well balance nutrition in each can, three in the morning, three in the afternoon and two at night 8 cans x 250 calories = 2000 calories, add water, sit back in the recliner and relax and watch as it disappears down the feeding tube into my stomach, eating to live not living to eat. Add water, an hour a day of exercise, you may call it a slow walk I call it exercise. Shower, shave each day and be on time for all of my appointments, I have never missed a treatment unless a doctor said no not today.
They want me to drink water through the mouth, but that extremely hard to do, a sip of water is hard to swallow and the pills are almost impossible and they are very small, if there anything I can try harder at swallowing the water. It is easy to get lazy even with this, it is so much easier to just pour the bottle of water down my feeding tube into my stomach and no pain involved. I like it when pain is optional and not mandatory, what I need to learn to do it get tough and go with the pain a little more.
It is 5:30AM and I am going for a walk, I am not sure what the day has in store for me, but I am getting off on a good start, I am beating the sun up and will be outside to say good morning when it arrives.
I still choose to Fight On.
Michael
Wednesday, October 22, 2008
Cancer Thoughts 12
What is the face of Cancer? Is it the little kid whose chemo therapy has robbed him of his hair and his youth? Is it that of the young mother fighting breast cancer whose only concern is what is going to happen to my children? Or is it the father holding his daughters hand, praying that he can make it long enough to walk her down the isle? Is it you? Is it me? It is all of this and more.
My favorite 6 year old Madison Murr likes to use the word hideous and when she does, it is funny and a crack up. How is it that a word like hideous make us laugh and cancer makes us cry?
I am so angry at everything not all the time just some of the time. I want to go hang out and do stuff but I can’t, I can’t fix anything, I want to drive and go places and walk down the isles of Costco and buy stuff I don’t need, but I can’t, well if my wife drives me and make me promise to ride in one of those motorized carts she will take me, but that is like shopping with your mom, sorry moms but when your 55 and want to shop by yourself having your mom take you is no fun. Energy is only given to me by drugs, I can not eat, and I can not drink. I love going to lunch with my friends and I can not do that. My teeth feel like a bed of nails and every time my tongue touches one of them it jabs my tongue like a nail. I am so tired of this. If I take enough pain medication then it doesn’t hurt as much, but then I can’t concentrate, I can not write, I can’t get it out how I feel. I can not put my feelings and thoughts in to words.
I walk at night when the sun is not up, I miss the sun. One of the last good long walks I took was to Seal Beach along the river bed that has a channel full of ocean water that leads from our track right into Seal Beach and the Pacific Ocean. It was a Saturday morning and there was a Seal swimming back out to the ocean he or she was playing making noise, it was so cool I love walking along that river bed and cancer has robbed me of that.
OK enough negative stuff, I had chemo on yesterday and today I feel wonderful, life it good, I am hoping I still feel this good after radiation today. If so then I have some big plans like cleaning out my drawers and closet, whoop pee now that sounds like a big day, not as good as good as shopping at Costco with my mom I mean wife, but it will have to do.
I spoke to a friend of mine Bob Dearing and he reminded me that is says in bible that God would give me the strength to endure and to trust in god and even though he slays me I can trust him. When this all started Patty and I went to our priest Father Bob and I was so afraid of the radiation and I ask him what prayer could say that would help me relax when I am strapped in and get through it without so much panic? He said why you don’t try what I say, I trust in you God, the same advice one from a Baptist and a Catholic. How about that? Radiation is no big deal now, at least not while I am getting it, I am very comfortable on the table and trust in the radiation techs as well, they are good at what they do.
It is the Ray’s and Phillies in the world series, Cub fans are now all gone, The California contingent is swinging it support to the Phillies in protest of the Rays band wagon fans, 13,000 in the park a month ago and all of there Ray’s gear is new, what this sad day in baseball land, we are left with no other move than to root for the Phillies. I will say I do like the manager of the Rays I have glasses like his but now I am rethinking my glasses and may have to go to a new style.
November 4th is coming remember to vote, I for one will.
Wednesday, October 22nd 2008 as always I choose to Fight On.
Michael
My favorite 6 year old Madison Murr likes to use the word hideous and when she does, it is funny and a crack up. How is it that a word like hideous make us laugh and cancer makes us cry?
I am so angry at everything not all the time just some of the time. I want to go hang out and do stuff but I can’t, I can’t fix anything, I want to drive and go places and walk down the isles of Costco and buy stuff I don’t need, but I can’t, well if my wife drives me and make me promise to ride in one of those motorized carts she will take me, but that is like shopping with your mom, sorry moms but when your 55 and want to shop by yourself having your mom take you is no fun. Energy is only given to me by drugs, I can not eat, and I can not drink. I love going to lunch with my friends and I can not do that. My teeth feel like a bed of nails and every time my tongue touches one of them it jabs my tongue like a nail. I am so tired of this. If I take enough pain medication then it doesn’t hurt as much, but then I can’t concentrate, I can not write, I can’t get it out how I feel. I can not put my feelings and thoughts in to words.
I walk at night when the sun is not up, I miss the sun. One of the last good long walks I took was to Seal Beach along the river bed that has a channel full of ocean water that leads from our track right into Seal Beach and the Pacific Ocean. It was a Saturday morning and there was a Seal swimming back out to the ocean he or she was playing making noise, it was so cool I love walking along that river bed and cancer has robbed me of that.
OK enough negative stuff, I had chemo on yesterday and today I feel wonderful, life it good, I am hoping I still feel this good after radiation today. If so then I have some big plans like cleaning out my drawers and closet, whoop pee now that sounds like a big day, not as good as good as shopping at Costco with my mom I mean wife, but it will have to do.
I spoke to a friend of mine Bob Dearing and he reminded me that is says in bible that God would give me the strength to endure and to trust in god and even though he slays me I can trust him. When this all started Patty and I went to our priest Father Bob and I was so afraid of the radiation and I ask him what prayer could say that would help me relax when I am strapped in and get through it without so much panic? He said why you don’t try what I say, I trust in you God, the same advice one from a Baptist and a Catholic. How about that? Radiation is no big deal now, at least not while I am getting it, I am very comfortable on the table and trust in the radiation techs as well, they are good at what they do.
It is the Ray’s and Phillies in the world series, Cub fans are now all gone, The California contingent is swinging it support to the Phillies in protest of the Rays band wagon fans, 13,000 in the park a month ago and all of there Ray’s gear is new, what this sad day in baseball land, we are left with no other move than to root for the Phillies. I will say I do like the manager of the Rays I have glasses like his but now I am rethinking my glasses and may have to go to a new style.
November 4th is coming remember to vote, I for one will.
Wednesday, October 22nd 2008 as always I choose to Fight On.
Michael
Saturday, October 18, 2008
Cancer Thoughts 11
My oncologist put me on the Fentanyl patch today; when Patty and I first went to the oncologist he promised they would not leave me in pain, he didn’t say anything about me being opioid dependent after this is all over. Knowing what I do about my Doctors and since one doctor recommended it and another prescribed it, I have to believe that it the correct thing. The last few days have been fairly easy, my tongue still hurts as the patch takes 14 hours to start kicking in but once it does, I think of it is an E Ticket ride.
Fentanyl is one of the most powerful opioid analgesics with a potency approximately 81 times that of morphine. It is also a highly abused drug, as a result being categorized as a Schedule II drug in the United States.
Mark Twain said “Humor is the great thing, the saving thing. The minute it crops up, all our irritations and resentments slip away and a sunny spirit takes their place”. There is really no humor in this disease but having a sense of humor and a wife whose sense of humor is one of her best assets, when she laughs people laugh, her laugh is infectious and that is one of the things that keeps me going.
I am so worried about becoming some drugged out old hippie who counts the hours until I get the new patch, or the next what ever, but of course I will tell you the pain is real, very real and the balance will be a challenge.
I want to write all of this down so when someone else goes through this, maybe they can find it and read about the human side of this. Nothing has prepared me for all of this and I have read books, literature from the doctors. I actually read those long things that come inside the prescriptions and make Patty sit and listen while I do it. I have read Chemo and Radiation for Dummy’s, 100 questions about head and neck cancer. I have read so much I can communicate with the doctors and understand why the decisions are being made and how. For now I am done reading about treatment. It is time to focus on recovery and prevention; this will be my next reading assignments I hope my mind will be clear enough to take it all in.
It has been a week of no treatment, but we actually spent a lot time with my entire set of oncologist this week, including my surgeon. One thing I did l learn is that Surgery is not the easy way out in fact the pain of the recovery from the surgery is as bad or mare painful than radiation, everyone talks about chemo being bad but for me it seems like the radiation is what is wearing me out, although my radiation is scheduled for 8 weeks and the chemo 6 weeks. I ask my medial oncologist about this and he said I would only get the week 7 and 8 chemo if I could handle it, like he knows what he is talking about, LOL. I get chemo this Tuesday so we will see how I do after that.
November 4th 2008 is the general election I have chemo and radiation that day and I plan on voting I hope you do to. Please vote, let’s make this the biggest turn out ever. I do not care who you vote for, what proposition or cause you’re interested in and please do not turn this into a political debate, just vote. Please do not make me regret asking you to vote and use a reply to this as a way get your political point of view out there. Thank for understanding and thanks for voting.
Congratulations to the Phillies go Sox as always be well and I choose to Fight ON.
Michael
Fentanyl is one of the most powerful opioid analgesics with a potency approximately 81 times that of morphine. It is also a highly abused drug, as a result being categorized as a Schedule II drug in the United States.
Mark Twain said “Humor is the great thing, the saving thing. The minute it crops up, all our irritations and resentments slip away and a sunny spirit takes their place”. There is really no humor in this disease but having a sense of humor and a wife whose sense of humor is one of her best assets, when she laughs people laugh, her laugh is infectious and that is one of the things that keeps me going.
I am so worried about becoming some drugged out old hippie who counts the hours until I get the new patch, or the next what ever, but of course I will tell you the pain is real, very real and the balance will be a challenge.
I want to write all of this down so when someone else goes through this, maybe they can find it and read about the human side of this. Nothing has prepared me for all of this and I have read books, literature from the doctors. I actually read those long things that come inside the prescriptions and make Patty sit and listen while I do it. I have read Chemo and Radiation for Dummy’s, 100 questions about head and neck cancer. I have read so much I can communicate with the doctors and understand why the decisions are being made and how. For now I am done reading about treatment. It is time to focus on recovery and prevention; this will be my next reading assignments I hope my mind will be clear enough to take it all in.
It has been a week of no treatment, but we actually spent a lot time with my entire set of oncologist this week, including my surgeon. One thing I did l learn is that Surgery is not the easy way out in fact the pain of the recovery from the surgery is as bad or mare painful than radiation, everyone talks about chemo being bad but for me it seems like the radiation is what is wearing me out, although my radiation is scheduled for 8 weeks and the chemo 6 weeks. I ask my medial oncologist about this and he said I would only get the week 7 and 8 chemo if I could handle it, like he knows what he is talking about, LOL. I get chemo this Tuesday so we will see how I do after that.
November 4th 2008 is the general election I have chemo and radiation that day and I plan on voting I hope you do to. Please vote, let’s make this the biggest turn out ever. I do not care who you vote for, what proposition or cause you’re interested in and please do not turn this into a political debate, just vote. Please do not make me regret asking you to vote and use a reply to this as a way get your political point of view out there. Thank for understanding and thanks for voting.
Congratulations to the Phillies go Sox as always be well and I choose to Fight ON.
Michael
Tuesday, October 14, 2008
Cancer Thoughts 10
Saturday, October 11th Today is a good day, I feel as normal as possible given the circumstances. My mouth is dry as usual, my lips are chapped and I have not had to medicate to control the pain in my mouth since about 4 AM and it is 9:30 AM so that is very good. My head is clear, I had a good nights sleep and it is College Football Saturday. The night before and the day of chemo I am given Dexamethasone which wikipedia gives the following information “a potent synthetic member of the glucocorticoid class of steroid hormones. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone.”
The problem comes when the Dexamethasone wears off and that is when the crash comes. Which could be anytime but who knows. I have learned that how I feel in the mornings has nothing to do with how I will fell in the afternoon or night. But for now I am as normal as I can be.
Monday, October 13th the crash has come I am tired; everything hurts especially my mouth and tongue. Patty and I tried to walk to tonight and I didn’t make it very far about 100 yards round trip, will try to do better tomorrow. Radiation was uneventful and I sleep a good part of the day.
Tuesday, October 14 My mouth and tongue hurt so much I had Patty call and make an appointment with the dental Oncologist and then we went to radiation, I ask to see the doctor he did the normal stuff put on his gloves and his high tech light grabbed a tongue suppressor and ask me to open up, took one look at my tongue and then said “Well we don’t need this” and put the tongue suppressor and other stuff down and told me or what I heard him say was he was stopping treatment, what he meant was for the week, what I heard was just stopping treatment. As usual Patty was there to get me off the wall. I have a week of no radiation and rest which my body needs.
The Dental oncologist spent a lot time talking to us and going over everything including my medication, gave us some recommendations to talk to the medial oncologist about, made sure Patty wrote everything down and had the spelling correct. His name is Dr. Nelson Lowe he is simply the best, he is USC grad and as he is going through all of this with us he says “you know worst part of this? What happened in Oregon? We laughed and I was able to relax and settle down a bit, Patty and me both think not only is he a wonderful doctor but a great man.
Thank you to everyone who has sent me cards, Emails, flowers and prayers. They all are great one Email from my friends mom who I have never met prior to her sending me an Email, her name is Phyllis Varipapa, Phyllis told me “please don't give up, Keep the faith and persevere” Phyllis if you can take the time out to write; I promise to never give up and with faith I will always persevere.
Thanks to everyone, be well I still choose to Fight On.
Michael
The problem comes when the Dexamethasone wears off and that is when the crash comes. Which could be anytime but who knows. I have learned that how I feel in the mornings has nothing to do with how I will fell in the afternoon or night. But for now I am as normal as I can be.
Monday, October 13th the crash has come I am tired; everything hurts especially my mouth and tongue. Patty and I tried to walk to tonight and I didn’t make it very far about 100 yards round trip, will try to do better tomorrow. Radiation was uneventful and I sleep a good part of the day.
Tuesday, October 14 My mouth and tongue hurt so much I had Patty call and make an appointment with the dental Oncologist and then we went to radiation, I ask to see the doctor he did the normal stuff put on his gloves and his high tech light grabbed a tongue suppressor and ask me to open up, took one look at my tongue and then said “Well we don’t need this” and put the tongue suppressor and other stuff down and told me or what I heard him say was he was stopping treatment, what he meant was for the week, what I heard was just stopping treatment. As usual Patty was there to get me off the wall. I have a week of no radiation and rest which my body needs.
The Dental oncologist spent a lot time talking to us and going over everything including my medication, gave us some recommendations to talk to the medial oncologist about, made sure Patty wrote everything down and had the spelling correct. His name is Dr. Nelson Lowe he is simply the best, he is USC grad and as he is going through all of this with us he says “you know worst part of this? What happened in Oregon? We laughed and I was able to relax and settle down a bit, Patty and me both think not only is he a wonderful doctor but a great man.
Thank you to everyone who has sent me cards, Emails, flowers and prayers. They all are great one Email from my friends mom who I have never met prior to her sending me an Email, her name is Phyllis Varipapa, Phyllis told me “please don't give up, Keep the faith and persevere” Phyllis if you can take the time out to write; I promise to never give up and with faith I will always persevere.
Thanks to everyone, be well I still choose to Fight On.
Michael
Friday, October 10, 2008
Cancer Thoughs 9
The radiation has damaged my mouth and tongue to the point I can no longer eat. The feeding tube is how I receive all of my food. I am very lucky the doctors insisted on me having it prior to the treatment starting. Thursday morning I was able to eat my standard scrambled eggs and cottage cheese, by lunch eating caused so much pain in my tongue and swallowing was impossible. Patty then tried mashed potatoes for dinner and I could not even get that down. So we simplified the process and used the feeding tube. Of course I still have a fair sense of smell and that is what is so frustrating smelling food you know that used to taste so good and not being able to taste or eat it. To find a silver lining in this, the health experts say you should eat to live not live to eat. I for one have always chosen the later but now eat to live.
The feeding tube is simple, no taste but I do get full. My nutrition comes from a product called Jevity each can is 250 calories and I will be having 2 cans for each meal, which along with 2 bottles of vitamin water will give me 1750 calories for the day. What I noticed today is an hour after the feeding I felt full so the product does it job and will enable me to keep up my strength and continue my treatment.
Chemo was a challenge yesterday, when the nurse first started the Taxotere I had an allergic reaction, my face got very hot, I threw up but the nurse handled it like a pro she quickly stopped the Taxotere, give me a shot a Benadryl and an IV after that I was fine. She then restarted the Taxotere at a slower rate and I was able to finish the Chemo.
I have already had my radiation today, so nothing to do as far as treatment until Monday. I am tired but am hoping I can stay awake long enough to finish watching the end of the Dodgers, Phillies game. The Phillies won last night but we were in the game and all we need to do is win one in Philadelphia and then bring it home and finish it there. I am hoping all the cub fans are rooting for the Phillies that should be all we need to put us over the top.
I now have to take 2 different pain medications for my mouth, which both are heavy narcotics, I like the fact that it lets me at least have some comfort in my mouth, but it also make me tired and drugged out and that I do not like, it hurts to talk sometimes and my voice is changing. With all this I am quite as well. My personality is changing outwardly but inside I am still the same. This is just something I have to get through and with the help of my wife, family and friends, I will.
Patty, I promise you this is just temporary. I won’t always sleep all day and be sad. I am so sorry for what I am putting you through. I feel you do not have anyone to hold you up, like you have been doing for me. Without you I am not sure how I would get through this. Everyone is so worried about me and I wish you could get out more and do something for yourself instead of having to do everything for me. I love you more than you will ever know and thank you for all you do for me, it does not go unnoticed and I know I am not always nice right now. You are the light of my life and becoming a good husband who participates in this marriage is my goal and keeps me going, I know the best thing I can do for you is to be a good patient, do what the doctors tell me to and get well. Of course when they stop filling me full of radiation and chemo drugs that will happen and with Gods help the cancer will be gone. Patty you make it all tolerable and I love you with all my heart.
I still choose to fight on, be well.
Michael
The feeding tube is simple, no taste but I do get full. My nutrition comes from a product called Jevity each can is 250 calories and I will be having 2 cans for each meal, which along with 2 bottles of vitamin water will give me 1750 calories for the day. What I noticed today is an hour after the feeding I felt full so the product does it job and will enable me to keep up my strength and continue my treatment.
Chemo was a challenge yesterday, when the nurse first started the Taxotere I had an allergic reaction, my face got very hot, I threw up but the nurse handled it like a pro she quickly stopped the Taxotere, give me a shot a Benadryl and an IV after that I was fine. She then restarted the Taxotere at a slower rate and I was able to finish the Chemo.
I have already had my radiation today, so nothing to do as far as treatment until Monday. I am tired but am hoping I can stay awake long enough to finish watching the end of the Dodgers, Phillies game. The Phillies won last night but we were in the game and all we need to do is win one in Philadelphia and then bring it home and finish it there. I am hoping all the cub fans are rooting for the Phillies that should be all we need to put us over the top.
I now have to take 2 different pain medications for my mouth, which both are heavy narcotics, I like the fact that it lets me at least have some comfort in my mouth, but it also make me tired and drugged out and that I do not like, it hurts to talk sometimes and my voice is changing. With all this I am quite as well. My personality is changing outwardly but inside I am still the same. This is just something I have to get through and with the help of my wife, family and friends, I will.
Patty, I promise you this is just temporary. I won’t always sleep all day and be sad. I am so sorry for what I am putting you through. I feel you do not have anyone to hold you up, like you have been doing for me. Without you I am not sure how I would get through this. Everyone is so worried about me and I wish you could get out more and do something for yourself instead of having to do everything for me. I love you more than you will ever know and thank you for all you do for me, it does not go unnoticed and I know I am not always nice right now. You are the light of my life and becoming a good husband who participates in this marriage is my goal and keeps me going, I know the best thing I can do for you is to be a good patient, do what the doctors tell me to and get well. Of course when they stop filling me full of radiation and chemo drugs that will happen and with Gods help the cancer will be gone. Patty you make it all tolerable and I love you with all my heart.
I still choose to fight on, be well.
Michael
Thursday, October 9, 2008
Cancer Thoughts 8
Side Effects
Be forewarned that what you are about to read below will definitely come under the heading of to much information and I am sure you will wonder why I am sharing it. For me the reason is simple, I keep thinking I am prepared for what’s about to happen next and no matter how much I think I am, I am not at prepared. Writing about it, sharing it with others for me takes away the shame of it all. This battle is getting harder, and the mental part is starting to take its toll, I am already tired and don’t always feel like fighting and I am only at the end of the second week. The side effects are piling on and I need to get back into the game which right now is very hard when I all want to do is just give up.
Patty was out working in the garage getting ready for a garage sale on Saturday and thought I was a sleep so that is why she wasn’t around to help.
Friday night I went to bed felt normal and good and then all of sudden I woke up and was sick to my stomach like I have never been before. Like everyone else I do not like to throw up and want to maintain some dignity in my life, Friday night I didn’t care about anything so I laid a towel down on the bathroom floor there was a unopened bundle of toilet paper that I used for a pillow and I just laid on the floor and leaned over and threw up into the toilet until I couldn’t throw up anymore. Finally I banged on the wall and Patty came in and helped me it was a horrible experience for both Patty and me. When she came in she thought I had fell and passed out but we got through it, I am guessing that will not be the last experience like that.
The radiation has finally caused my throat to hurt beyond description, the question is always ask on a scale from 1 to 10 how bad is it, well it is way past 10. I can no longer swallow most anything soft bread or a scrambled egg is almost impossible to get down. My tongue has pain beyond belief and it feels like it is twice its size and my mouth is dry all the time. Everything taste like metallic cardboard, and it is like I have a salt pellet in my mouth all the time.
On Monday I received my daily shot of Amifostine and had a sever allergic reaction, throwing up, my blood pressure dropped in the he 80’s and they had to call 911, The paramedics came in gave me an IV, transported me to the hospital and I was give more medicine and test and threw up some more, finally about 4 PM I was stable enough to go home and my medical oncologist was contacted by the ER doc, and he ordered the Amifostine to be stopped. I will so miss the 2 minute shot into my stomach and red blotches, the pain, the itching. We are hoping that eliminating the Amifostine will lessen some of the reactions I have had to the treatment but who knows.
This has not been a good week and I miss my dog and it is only Wednesday. I am not sure what the rest of the week will bring and have been told that the 3rd chemo treatment is when the side effects hit the hardest. God knows what that will be I am planning for the worst and hoping for the best but at this point I think I am afraid of the best as well.
I would like to tell you something positive about my health but I just do not have anything for you.
What I do have is an incredible caregiver in my wife Patty who when I see I believe that everything will be OK. My family, friends, neighbors, have stepped up beyond anything I could ask for and I am a very lucky man to have the support, love and care from all of you.
No matter the struggle, no matter the pain, no matter how bad I feel I still choose to Fight On.
Wish me luck tomorrow and in the days following chemo. Be well
Love Michael
Be forewarned that what you are about to read below will definitely come under the heading of to much information and I am sure you will wonder why I am sharing it. For me the reason is simple, I keep thinking I am prepared for what’s about to happen next and no matter how much I think I am, I am not at prepared. Writing about it, sharing it with others for me takes away the shame of it all. This battle is getting harder, and the mental part is starting to take its toll, I am already tired and don’t always feel like fighting and I am only at the end of the second week. The side effects are piling on and I need to get back into the game which right now is very hard when I all want to do is just give up.
Patty was out working in the garage getting ready for a garage sale on Saturday and thought I was a sleep so that is why she wasn’t around to help.
Friday night I went to bed felt normal and good and then all of sudden I woke up and was sick to my stomach like I have never been before. Like everyone else I do not like to throw up and want to maintain some dignity in my life, Friday night I didn’t care about anything so I laid a towel down on the bathroom floor there was a unopened bundle of toilet paper that I used for a pillow and I just laid on the floor and leaned over and threw up into the toilet until I couldn’t throw up anymore. Finally I banged on the wall and Patty came in and helped me it was a horrible experience for both Patty and me. When she came in she thought I had fell and passed out but we got through it, I am guessing that will not be the last experience like that.
The radiation has finally caused my throat to hurt beyond description, the question is always ask on a scale from 1 to 10 how bad is it, well it is way past 10. I can no longer swallow most anything soft bread or a scrambled egg is almost impossible to get down. My tongue has pain beyond belief and it feels like it is twice its size and my mouth is dry all the time. Everything taste like metallic cardboard, and it is like I have a salt pellet in my mouth all the time.
On Monday I received my daily shot of Amifostine and had a sever allergic reaction, throwing up, my blood pressure dropped in the he 80’s and they had to call 911, The paramedics came in gave me an IV, transported me to the hospital and I was give more medicine and test and threw up some more, finally about 4 PM I was stable enough to go home and my medical oncologist was contacted by the ER doc, and he ordered the Amifostine to be stopped. I will so miss the 2 minute shot into my stomach and red blotches, the pain, the itching. We are hoping that eliminating the Amifostine will lessen some of the reactions I have had to the treatment but who knows.
This has not been a good week and I miss my dog and it is only Wednesday. I am not sure what the rest of the week will bring and have been told that the 3rd chemo treatment is when the side effects hit the hardest. God knows what that will be I am planning for the worst and hoping for the best but at this point I think I am afraid of the best as well.
I would like to tell you something positive about my health but I just do not have anything for you.
What I do have is an incredible caregiver in my wife Patty who when I see I believe that everything will be OK. My family, friends, neighbors, have stepped up beyond anything I could ask for and I am a very lucky man to have the support, love and care from all of you.
No matter the struggle, no matter the pain, no matter how bad I feel I still choose to Fight On.
Wish me luck tomorrow and in the days following chemo. Be well
Love Michael
We Lost Tucker Today
We lost Tucker today; for those of you who do not know Tucker was our dog, but so much more. Tucker was and will always be a part of our family. Like all family members Tucker had a unique relationship with each person in our family he was closest to Rick and me.
I love Tucker like I love any other person in my family, I spoke to him like a person, said hello when I came in the house, said goodbye and had conversations with him, which I fully believe he understood. I am very sad, when Tucker passed on Marcela, Rick, Patty and I were with him along with the vet. There is a hole in heart right now; Tucker was such a pretty dog, handsome, big, strong, beautiful brown eyes, Tucker was hairy to leave that part out would be a disservice to how much hair he actually had which was a lot, and it was everywhere we went through a vacuum cleaner every year, Tucker’s dog hair was everywhere and I will miss it.
Tucker was a big dog 110 pounds full bread German Sheppard. He had a big bark, the kind of bark that kept people out of your house. We never had anyone come in who didn’t say that is a big dog. He was very protective of me and our family and enjoyed letting you know he was there. If someone was afraid of Tucker and he knew it he would give them a deep growl to make them feel more uncomfortable. Now if you were not afraid of him, he was gentle, kind and loving. One of his favorite things was to have his chin scratched, very softly.
I would like to end with this. Our entire family loved Tucker all in our different ways and for that our lives were better. He was smarter, prettier, and handsomer than all of us. I miss you Tucker, I always told you I love you and you were favorite dog. Tucker I do love you and you are will always be my favorite dog.
With deepest sorrow Michael
I love Tucker like I love any other person in my family, I spoke to him like a person, said hello when I came in the house, said goodbye and had conversations with him, which I fully believe he understood. I am very sad, when Tucker passed on Marcela, Rick, Patty and I were with him along with the vet. There is a hole in heart right now; Tucker was such a pretty dog, handsome, big, strong, beautiful brown eyes, Tucker was hairy to leave that part out would be a disservice to how much hair he actually had which was a lot, and it was everywhere we went through a vacuum cleaner every year, Tucker’s dog hair was everywhere and I will miss it.
Tucker was a big dog 110 pounds full bread German Sheppard. He had a big bark, the kind of bark that kept people out of your house. We never had anyone come in who didn’t say that is a big dog. He was very protective of me and our family and enjoyed letting you know he was there. If someone was afraid of Tucker and he knew it he would give them a deep growl to make them feel more uncomfortable. Now if you were not afraid of him, he was gentle, kind and loving. One of his favorite things was to have his chin scratched, very softly.
I would like to end with this. Our entire family loved Tucker all in our different ways and for that our lives were better. He was smarter, prettier, and handsomer than all of us. I miss you Tucker, I always told you I love you and you were favorite dog. Tucker I do love you and you are will always be my favorite dog.
With deepest sorrow Michael
Cancer Thoughts 7
Changes in Latitude, Changes in Attitude
That is the theme for me this week; it is the end of the second week Chemo is done for the week and I have one more radiation treatment to go on Friday and two days off. I am so looking forward to the weekend.
I have the radiation process down now, and it goes like this.
• Go into the room shirt off
• Go to sink get my mouth guards and tongue protector out rinse wipe and take my glasses off put them by the cover for my mouth guards.
• This is the most important part, wipe every part of my face and make sure I scratch and double scratch even it doesn’t itch. Repeat the process and wipe the corners of my mouth.
• Lie on table, get strapped in and then Tino says here we go, and they leave the room to go into the control room they watch me on TV to insure everything is OK.
• Now this is usually when my nose starts to itch that little dribble comes out of my mouth, even thought the other 23 hours and 59 minutes of the day my mouth is dry.
• I say my prayers and do my best to ignore the itches and dribble.
• The next part is the longest part it is the x-ray and the computer takes x-rays of me and then the computer moves the table to the exact same position each time when that process is complete the x-ray part of the machine moves out of the way.
• Now the radiation part moves in to place which is al the way to the extreme right Position 1a, I call it.
• A 25 second or so blast of radiation the machine repeats the process from the same position at a different angle.
• When it is done it move to position 2 with two shots of radiation at each position all the way to position 8 which is on the extreme left side.
• At that point I can see what I like to call a wonderful red led and when I can see it I know it is the last position.
• They come in remove the straps and I am done.
It is a lot like start wars lasers with laser and computers doing all the work and sighting everything up and very cool technology they have a full time physicist who does the programming. Now before this I never really thought of what a physicist looks like but this guy looks exactly what a physicist should look like, head in the computer thin and kind of like a nerd, but it is so reassuring that he does look like what I feel a physicist should look like. If he looked like Tom Cruise or Brad Pitt that would bother me, I feel confident they have the right guy but who knows.
So far other than a dry mouth, a small continuous sore throat and upset stomach no other side effects, other than a short trip to the ER. I had a temperature of 102.7 on Wednesday night and we have been told any temperature over 101 I have to go the Emergency room, they gave me a Tylenol and an IV and hour later my temperature was normal again, and they let me go home, no big deal. The whole process took 3 ½ hours. I had a great attitude the whole time regardless of what Patty tells you. It is hard to accept normal medicine when I have the privilege of working with what I like to think of as world class doctors and there equally qualified staff. The truth is now I only see the doctors once a week we talk, they read the notes, we talk some more and they are gone I am working with the nurses and Radiation Techs, who all like and care about there job, they do not say it in words but in actions and attitude. By the way the daily shot in the stomach is hmmm well just that, I have actually thought myself a deep breathing technique that most often helps me relax and most important the mussels in my stomach relax, I am told somewhere under the fat there is some type of mussel I hope they find it soon so I can see it as well.
So what does this all have to do with Changes in Latitude and Changes in Attitude? That is going to be my theme for the next weeks to come. I still have moments of frustration, anger, and self-doubt and allow too many low points in. My attitude is important and I have to keep it at an even keel.
No more football predictions, Go Dodgers they are up 2 games to none over the Cubs who knows what will happen the Cubs are a good team but I rooting for the goat and its curse to continue over the cubs. Sorry Cub fans.
I still choose to Fight On and stay positive.
With Love Michael
That is the theme for me this week; it is the end of the second week Chemo is done for the week and I have one more radiation treatment to go on Friday and two days off. I am so looking forward to the weekend.
I have the radiation process down now, and it goes like this.
• Go into the room shirt off
• Go to sink get my mouth guards and tongue protector out rinse wipe and take my glasses off put them by the cover for my mouth guards.
• This is the most important part, wipe every part of my face and make sure I scratch and double scratch even it doesn’t itch. Repeat the process and wipe the corners of my mouth.
• Lie on table, get strapped in and then Tino says here we go, and they leave the room to go into the control room they watch me on TV to insure everything is OK.
• Now this is usually when my nose starts to itch that little dribble comes out of my mouth, even thought the other 23 hours and 59 minutes of the day my mouth is dry.
• I say my prayers and do my best to ignore the itches and dribble.
• The next part is the longest part it is the x-ray and the computer takes x-rays of me and then the computer moves the table to the exact same position each time when that process is complete the x-ray part of the machine moves out of the way.
• Now the radiation part moves in to place which is al the way to the extreme right Position 1a, I call it.
• A 25 second or so blast of radiation the machine repeats the process from the same position at a different angle.
• When it is done it move to position 2 with two shots of radiation at each position all the way to position 8 which is on the extreme left side.
• At that point I can see what I like to call a wonderful red led and when I can see it I know it is the last position.
• They come in remove the straps and I am done.
It is a lot like start wars lasers with laser and computers doing all the work and sighting everything up and very cool technology they have a full time physicist who does the programming. Now before this I never really thought of what a physicist looks like but this guy looks exactly what a physicist should look like, head in the computer thin and kind of like a nerd, but it is so reassuring that he does look like what I feel a physicist should look like. If he looked like Tom Cruise or Brad Pitt that would bother me, I feel confident they have the right guy but who knows.
So far other than a dry mouth, a small continuous sore throat and upset stomach no other side effects, other than a short trip to the ER. I had a temperature of 102.7 on Wednesday night and we have been told any temperature over 101 I have to go the Emergency room, they gave me a Tylenol and an IV and hour later my temperature was normal again, and they let me go home, no big deal. The whole process took 3 ½ hours. I had a great attitude the whole time regardless of what Patty tells you. It is hard to accept normal medicine when I have the privilege of working with what I like to think of as world class doctors and there equally qualified staff. The truth is now I only see the doctors once a week we talk, they read the notes, we talk some more and they are gone I am working with the nurses and Radiation Techs, who all like and care about there job, they do not say it in words but in actions and attitude. By the way the daily shot in the stomach is hmmm well just that, I have actually thought myself a deep breathing technique that most often helps me relax and most important the mussels in my stomach relax, I am told somewhere under the fat there is some type of mussel I hope they find it soon so I can see it as well.
So what does this all have to do with Changes in Latitude and Changes in Attitude? That is going to be my theme for the next weeks to come. I still have moments of frustration, anger, and self-doubt and allow too many low points in. My attitude is important and I have to keep it at an even keel.
No more football predictions, Go Dodgers they are up 2 games to none over the Cubs who knows what will happen the Cubs are a good team but I rooting for the goat and its curse to continue over the cubs. Sorry Cub fans.
I still choose to Fight On and stay positive.
With Love Michael
Cancer Thoughts 6
The end of week 1 of treatment 4 of 40 radiation treatments and 1 of 8 chemo therapy treatments completed, 36 and 7 left.
First under the heading of the USC Oregon state game, I have nothing for you on that. The best team won Thursday,
Nothing exciting until the 3rd radiation treatment as you know I have a face and shoulder mask that snaps to the table that I lay on and keeps me strapped in. For the past 6 months I have been having unrelated issue with a nerve in my neck that causes pain in my right arm only when I am laying flat as I do in radiation. So my arm is in agony the entire 25 minutes I am on table. So I ask the radiation technician if he could tie my arm down to see if the support would help the pain, which he did. Now the treatment starts and I panic, keep in mind I have both top and bottom mouth pieces in and a wax protector in between, I am pined down and now my arm is tied. I managed to get my arm out of the tie as they had left the other arm untied. They had to reset leave my arm untied and everything went OK with no more panic.
For me getting through this has required a lot of prayer, prayers as simple as help me god, I trust in you Jesus, and some like the Lords prayer, which I say before and during the treatment, on Thursday when I was panicking, my mind when get me out here. On Friday I spent the morning being calm and in prayer and it seem like the radiation was over before it started. I do know my mental attitude will go along way in helping me get through this.
Jim Valvano said “Now I'm fighting cancer, everybody knows that. People ask me all the time about how you go through your life and how's your day, and nothing is changed for me”. That is the difference between famous rich people and normal working class people, for me everything has changed and that is what I am trying to learn to adjust to.
I have no projects at work to finish or start, I have no place to travel to. I have no boss (I have a wife), I don’t always drive now. My schedule Monday – Friday is not determined by work or social outings it is determined by doctor’s visits, treatments, blood test, shots, when I am suppose to take what pill. It is a very unexciting life, but very necessary. I am also very lucky I do not have to the burden of working, I am sure trying to do everything would make this very tough for me, so the thing is that I am trying to adjust to is the thing that make this easier to deal with. Everything about cancer is backwards for me. I have a lot of thoughts on that and I am working on putting my thoughts down about cancer, my rage, and my anger about this battle we are in with cancer. Cancer affects everybody not just the person who gets it; it is a family disease, I see it everyday, in ways I never thought I would. Enough about cancer for now, I will talk about that much more in the weeks to come.
For now the side effects are almost non-existent I do get tired quickly and after chemo I was a little nauseated but other than that I am good. I had a play day with Madison on Friday she is 6, for those of you who don’t know, she is my niece’s daughter (actually Patty’s niece) she calls me Buddy and is my best little friend we went bike riding, swimming, played play dough, her and patty made me dinner and then we made cookies, and then we watched Shrek now that was a good day. I am hoping for a few more Friday’s like that but I have been told one more might be all I get who knows what will happen in the future but now I am well as I could hope for.
Thank you for listening and being there for me, I still choose to fight on.
Michael
First under the heading of the USC Oregon state game, I have nothing for you on that. The best team won Thursday,
Nothing exciting until the 3rd radiation treatment as you know I have a face and shoulder mask that snaps to the table that I lay on and keeps me strapped in. For the past 6 months I have been having unrelated issue with a nerve in my neck that causes pain in my right arm only when I am laying flat as I do in radiation. So my arm is in agony the entire 25 minutes I am on table. So I ask the radiation technician if he could tie my arm down to see if the support would help the pain, which he did. Now the treatment starts and I panic, keep in mind I have both top and bottom mouth pieces in and a wax protector in between, I am pined down and now my arm is tied. I managed to get my arm out of the tie as they had left the other arm untied. They had to reset leave my arm untied and everything went OK with no more panic.
For me getting through this has required a lot of prayer, prayers as simple as help me god, I trust in you Jesus, and some like the Lords prayer, which I say before and during the treatment, on Thursday when I was panicking, my mind when get me out here. On Friday I spent the morning being calm and in prayer and it seem like the radiation was over before it started. I do know my mental attitude will go along way in helping me get through this.
Jim Valvano said “Now I'm fighting cancer, everybody knows that. People ask me all the time about how you go through your life and how's your day, and nothing is changed for me”. That is the difference between famous rich people and normal working class people, for me everything has changed and that is what I am trying to learn to adjust to.
I have no projects at work to finish or start, I have no place to travel to. I have no boss (I have a wife), I don’t always drive now. My schedule Monday – Friday is not determined by work or social outings it is determined by doctor’s visits, treatments, blood test, shots, when I am suppose to take what pill. It is a very unexciting life, but very necessary. I am also very lucky I do not have to the burden of working, I am sure trying to do everything would make this very tough for me, so the thing is that I am trying to adjust to is the thing that make this easier to deal with. Everything about cancer is backwards for me. I have a lot of thoughts on that and I am working on putting my thoughts down about cancer, my rage, and my anger about this battle we are in with cancer. Cancer affects everybody not just the person who gets it; it is a family disease, I see it everyday, in ways I never thought I would. Enough about cancer for now, I will talk about that much more in the weeks to come.
For now the side effects are almost non-existent I do get tired quickly and after chemo I was a little nauseated but other than that I am good. I had a play day with Madison on Friday she is 6, for those of you who don’t know, she is my niece’s daughter (actually Patty’s niece) she calls me Buddy and is my best little friend we went bike riding, swimming, played play dough, her and patty made me dinner and then we made cookies, and then we watched Shrek now that was a good day. I am hoping for a few more Friday’s like that but I have been told one more might be all I get who knows what will happen in the future but now I am well as I could hope for.
Thank you for listening and being there for me, I still choose to fight on.
Michael
Cancer Thoughts 5
Hi everyone,
So the end of the first week is coming, this is one week I will not soon forget. For me time and life has and is changing beginning last Monday.
If you are getting this Email you are family, a close friend and someone both Patty and I care about. I also know that everyone does not process information and deal with life the same way. For me writing down how I feel, what I think, my fears and my hopes is therapeutic. I also know that not everyone wants to know how I feel and or what I think. If you do not want to continue to receive these E-mail’s please let me know and I will remove your from this list. One thing you should know I can not and will not always be hopeful and or positive, I am sure at some point some of these updates will be angry and full of rage and I understand if you do not want to read my rants and raves.
I am planning on writing a journal and sharing some of those thoughts, hopes, frustrations and fears along the journey that Patty and I are on. I know Patty is not sick but she is absolutely part of this and has already made easier for me. A lot of times I will say we saw the(insert doctors name here) and when I say that I do mean we. I can not image what it would be like to go through this alone. The doctors never just address me, they speak with both of us and make sure we both have an understanding of what is going to happen, what they are going to do or what they hope to do.
All of the doctors I am now seeing are some type of Oncologist, a medical (chemotherapy), a Radiologist, we are going to see the ENT Oncologist (Surgeon) tomorrow at 2:30 and that should complete the main team that will be treating me. We are hoping that he does not practice his medicine on me, as in my case both the other Oncologist have said that the plan is for them to kill all of the cancer using Chemo (once a week for eight weeks) and Radiation (five days a week for eight weeks), and then surgery would be done to remove anything that may be left, but of course we are hoping that is not necessary.
As long the surgeon agrees with the treatment plan set forth by the medical and radiation oncologist we are good to go. But both of the other oncologists have told me that he holds the trump card and will call the shots, so tomorrow will be a big day. If you do not hear from me you can assume that all is well and we off to Hawaii on Saturday. I am so looking forward to being in Hawaii with some of the people I love and care about. Well enough of this be well and have a good week I plan on it.
So again please let me know if you want me to take you off the list.
Me (me is much easier than Michael, Seal, Buddy, Mike)
So the end of the first week is coming, this is one week I will not soon forget. For me time and life has and is changing beginning last Monday.
If you are getting this Email you are family, a close friend and someone both Patty and I care about. I also know that everyone does not process information and deal with life the same way. For me writing down how I feel, what I think, my fears and my hopes is therapeutic. I also know that not everyone wants to know how I feel and or what I think. If you do not want to continue to receive these E-mail’s please let me know and I will remove your from this list. One thing you should know I can not and will not always be hopeful and or positive, I am sure at some point some of these updates will be angry and full of rage and I understand if you do not want to read my rants and raves.
I am planning on writing a journal and sharing some of those thoughts, hopes, frustrations and fears along the journey that Patty and I are on. I know Patty is not sick but she is absolutely part of this and has already made easier for me. A lot of times I will say we saw the(insert doctors name here) and when I say that I do mean we. I can not image what it would be like to go through this alone. The doctors never just address me, they speak with both of us and make sure we both have an understanding of what is going to happen, what they are going to do or what they hope to do.
All of the doctors I am now seeing are some type of Oncologist, a medical (chemotherapy), a Radiologist, we are going to see the ENT Oncologist (Surgeon) tomorrow at 2:30 and that should complete the main team that will be treating me. We are hoping that he does not practice his medicine on me, as in my case both the other Oncologist have said that the plan is for them to kill all of the cancer using Chemo (once a week for eight weeks) and Radiation (five days a week for eight weeks), and then surgery would be done to remove anything that may be left, but of course we are hoping that is not necessary.
As long the surgeon agrees with the treatment plan set forth by the medical and radiation oncologist we are good to go. But both of the other oncologists have told me that he holds the trump card and will call the shots, so tomorrow will be a big day. If you do not hear from me you can assume that all is well and we off to Hawaii on Saturday. I am so looking forward to being in Hawaii with some of the people I love and care about. Well enough of this be well and have a good week I plan on it.
So again please let me know if you want me to take you off the list.
Me (me is much easier than Michael, Seal, Buddy, Mike)
Cancer Thoughts 4
Monday, September 22, 2008
Today I went in for the trial run for the Radiation, which is done with an X-Ray instead of the normal radiation strength beam. They also tattooed my face mask, back in the old days they did the tattooing on the person, so I am still ink free.
I also wanted to talk a little about my last update; I may have given the impression that this is all horrible and I am not doing well with all of this, when the opposite is true. I am doing very well and so far I have not had any bad weeks, I have had a few bad days and some very bad moments, but over all I am doing very well.
I have a schedule now, Monday - Friday at 10:15 am I go and get a shot of amifostine, at 10:45 they start the radiation treatment and I should be through by 11:15. This week my Chemo is on Thursday at 12:15 and that takes about 3 hours. Of course there is no side effects yet, the amifostine will cause my blood pressure to drop and may make me stick to my stomach. In anticipation of this I am taking compazine every morning along with Clartin (I have no idea why I am taking the Clartin).
For the Chemo I will be taking a steroid the night before, and then the morning of the chemo. They will also give me an injection of steroids at the time of the chemo. One of the side effects of the steroids is a feeling of euphoria. My Oncologist says I will feel great the day of the chemo, he didn’t comment on how I will feel the day after but you have to take the good with the bad. I will also be taking some other medicine for the nausea.
I have 3 sisters two of them live very close to me, so I am able to have dinner and see them, we all went out to dinner Sunday night.
The following comes under the stupid thing I do.
I know they are worried about me and are concerned as I would be if they were in my shoes. So I wanted to make sure I ate all of my dinner, to show them I still have an appetite and I am OK. Now I was not hungry and I certainly should not have eaten all the food I did, and of course knowing that I will soon not be able to eat spicy food I had my fish blackened. So not only did I eat too much but I ate to much spicy food. Now we all know the results of eating to much spicy food, which is why stuff like TUMS is sold so much. Sunday night was miserable not because of Cancer, but because of stupidity. So Sandy and Gayle I am fine, I ate too much Sunday night and I will not do that again.
I am not sure what is going to happen in the next 12 or so weeks, but I do know the gastro doctor has ordered food that comes in a bag and is designed to connect to this thing coming out of the middle of my stomach. I have no intention of using the stuff. I have been told by 6 different doctors, 4 of them oncologist that I will definitely be using this product. They seem to think they know what they are talking about and everything they have told me has been consistent and happened so far, I think they all must be incredibly lucky, but it may be there years of experience and education. They all seem to think the next two weeks will be fairly easy and the side effects will start week 3 or 4, only time will tell. For now I am strong, healthy and happy as I can be, except I have cancer.
I hope everyone has a good week, I plan on having a good week and watching USC beat Oregon ST on Thursday night. The Trojan motto is Fight on, that is exactly what I plan on doing.
Fight On, Michael
P.S.
I have been asked if it is OK to forward this message, the answer is Yes. Also if you know anyone who wants to be included on these EMail please let me know and I will add them to the list. Be well.
Today I went in for the trial run for the Radiation, which is done with an X-Ray instead of the normal radiation strength beam. They also tattooed my face mask, back in the old days they did the tattooing on the person, so I am still ink free.
I also wanted to talk a little about my last update; I may have given the impression that this is all horrible and I am not doing well with all of this, when the opposite is true. I am doing very well and so far I have not had any bad weeks, I have had a few bad days and some very bad moments, but over all I am doing very well.
I have a schedule now, Monday - Friday at 10:15 am I go and get a shot of amifostine, at 10:45 they start the radiation treatment and I should be through by 11:15. This week my Chemo is on Thursday at 12:15 and that takes about 3 hours. Of course there is no side effects yet, the amifostine will cause my blood pressure to drop and may make me stick to my stomach. In anticipation of this I am taking compazine every morning along with Clartin (I have no idea why I am taking the Clartin).
For the Chemo I will be taking a steroid the night before, and then the morning of the chemo. They will also give me an injection of steroids at the time of the chemo. One of the side effects of the steroids is a feeling of euphoria. My Oncologist says I will feel great the day of the chemo, he didn’t comment on how I will feel the day after but you have to take the good with the bad. I will also be taking some other medicine for the nausea.
I have 3 sisters two of them live very close to me, so I am able to have dinner and see them, we all went out to dinner Sunday night.
The following comes under the stupid thing I do.
I know they are worried about me and are concerned as I would be if they were in my shoes. So I wanted to make sure I ate all of my dinner, to show them I still have an appetite and I am OK. Now I was not hungry and I certainly should not have eaten all the food I did, and of course knowing that I will soon not be able to eat spicy food I had my fish blackened. So not only did I eat too much but I ate to much spicy food. Now we all know the results of eating to much spicy food, which is why stuff like TUMS is sold so much. Sunday night was miserable not because of Cancer, but because of stupidity. So Sandy and Gayle I am fine, I ate too much Sunday night and I will not do that again.
I am not sure what is going to happen in the next 12 or so weeks, but I do know the gastro doctor has ordered food that comes in a bag and is designed to connect to this thing coming out of the middle of my stomach. I have no intention of using the stuff. I have been told by 6 different doctors, 4 of them oncologist that I will definitely be using this product. They seem to think they know what they are talking about and everything they have told me has been consistent and happened so far, I think they all must be incredibly lucky, but it may be there years of experience and education. They all seem to think the next two weeks will be fairly easy and the side effects will start week 3 or 4, only time will tell. For now I am strong, healthy and happy as I can be, except I have cancer.
I hope everyone has a good week, I plan on having a good week and watching USC beat Oregon ST on Thursday night. The Trojan motto is Fight on, that is exactly what I plan on doing.
Fight On, Michael
P.S.
I have been asked if it is OK to forward this message, the answer is Yes. Also if you know anyone who wants to be included on these EMail please let me know and I will add them to the list. Be well.
Cancer Thoughts 3
So it has been a few weeks since my last update.
Since we have been back from vacation, it has been a non-stop two weeks, going between doctors, multiple blood test, treatment plans, dentist, mouth guards and a wax protector for my tongue, having a mask made for radiation, a surgical biopsy, a feeding tube or as the doctors like to call it a G tube and a tumor board.
Let me talk a bit about the mask, now that was an experience. I am not sure what I though but I certainly was not prepared for that experience. I walked into a room with what looks like a standard CAT scan machine, except where you put your head is a square with snaps along the top and sides. Now the technician takes this white piece of plastic out that resembles a flat colander, and she puts it in this tank of hot water and then tells me lay on the table, she has me put in my mouth guards (they look exactly what you see football players wearing, except I have one for both the top and bottom). Then I have to place this piece of wax in between them which holds my tongue down, and then my hands are strapped to the table with the strap going down around my feet. Now comes the fun part (not that kind of fun) she takes the now very pliable hot wet plastic and places it over my face pushes it down and snaps it into place, pushing and molding the plastic to my face, the hot water is running down my face and then she takes and put cold wet towels on top of the plastic which now puts me in total darkness and I can not even began to protest since the mask has now hardened enough that I can not move my mouth. So I am in the dark tied down wet and completely immobilized and then they do a 15 minute CAT scan on me. Then after the CAT scan she asks are you OK? No, I wasn’t ok, but I got through it. I have been told that they will not tie my hands and feet, and it won’t be wet and I am hoping I will have some light when I have the radiation done for real. I was mortified when I left that place.
The feeding tube, now I was sure that would not be a big deal and maybe medically and surgically it wasn’t.
Now I know all of the medical reasons for the tube and they are sound and it is good medicine to have it in place. It may save my life and let them continue treatments they would otherwise have to stop if it wasn’t in place
I was not at all prepared for what I saw when I came to from the surgery, I have a 3 foot IV tube coming out of stomach with fittings and attachments. For the first time since this started I felt and looked like a sick person. My stomach hurts, I am embarrassed and I am not dealing with this with any grace or dignity. I am pissed off, angry and mad and all I can do is just go with it and somehow learn to accept it.
The Tumor board now that was an experience. If you have ever watched Gray’s anatomy it was something like that, except they let all of the medical student practice looking through the scope that was put in my nose and then down into the back of my throat. Now some were OK and some pushed it so far I could feel it on my tongue and thought it was coming out of my mouth. There were also heads of the departments and doctors who I was lucky to have see me. The tumor board recommendation was the same as my current treatment plan so that is a good thing. I was OK with that and was happy to have them practice on me. I think it was much harder for Patty who was watching the whole thing.
So next week the treatment starts, radiation every day, chemo once a week, with doctors visits in-between. All of the stuff is now done and the treatment is starting, I will keep you updated on how it is going at the end of next week.
With Love Michael
Since we have been back from vacation, it has been a non-stop two weeks, going between doctors, multiple blood test, treatment plans, dentist, mouth guards and a wax protector for my tongue, having a mask made for radiation, a surgical biopsy, a feeding tube or as the doctors like to call it a G tube and a tumor board.
Let me talk a bit about the mask, now that was an experience. I am not sure what I though but I certainly was not prepared for that experience. I walked into a room with what looks like a standard CAT scan machine, except where you put your head is a square with snaps along the top and sides. Now the technician takes this white piece of plastic out that resembles a flat colander, and she puts it in this tank of hot water and then tells me lay on the table, she has me put in my mouth guards (they look exactly what you see football players wearing, except I have one for both the top and bottom). Then I have to place this piece of wax in between them which holds my tongue down, and then my hands are strapped to the table with the strap going down around my feet. Now comes the fun part (not that kind of fun) she takes the now very pliable hot wet plastic and places it over my face pushes it down and snaps it into place, pushing and molding the plastic to my face, the hot water is running down my face and then she takes and put cold wet towels on top of the plastic which now puts me in total darkness and I can not even began to protest since the mask has now hardened enough that I can not move my mouth. So I am in the dark tied down wet and completely immobilized and then they do a 15 minute CAT scan on me. Then after the CAT scan she asks are you OK? No, I wasn’t ok, but I got through it. I have been told that they will not tie my hands and feet, and it won’t be wet and I am hoping I will have some light when I have the radiation done for real. I was mortified when I left that place.
The feeding tube, now I was sure that would not be a big deal and maybe medically and surgically it wasn’t.
Now I know all of the medical reasons for the tube and they are sound and it is good medicine to have it in place. It may save my life and let them continue treatments they would otherwise have to stop if it wasn’t in place
I was not at all prepared for what I saw when I came to from the surgery, I have a 3 foot IV tube coming out of stomach with fittings and attachments. For the first time since this started I felt and looked like a sick person. My stomach hurts, I am embarrassed and I am not dealing with this with any grace or dignity. I am pissed off, angry and mad and all I can do is just go with it and somehow learn to accept it.
The Tumor board now that was an experience. If you have ever watched Gray’s anatomy it was something like that, except they let all of the medical student practice looking through the scope that was put in my nose and then down into the back of my throat. Now some were OK and some pushed it so far I could feel it on my tongue and thought it was coming out of my mouth. There were also heads of the departments and doctors who I was lucky to have see me. The tumor board recommendation was the same as my current treatment plan so that is a good thing. I was OK with that and was happy to have them practice on me. I think it was much harder for Patty who was watching the whole thing.
So next week the treatment starts, radiation every day, chemo once a week, with doctors visits in-between. All of the stuff is now done and the treatment is starting, I will keep you updated on how it is going at the end of next week.
With Love Michael
Cancer Thoughts 2
The end of week two and already seems like a lifetime. The last two weeks have been filled with ups and downs.
Week one was results from the first biopsy and the words highly likely were used, a doctors appointment and another biopsy with the doctor asking for a definitive prognosis.
Week two started Monday morning with a 9:00 AM doctor’s appointment with the medical oncologist. We are on the way to the appointment and my cell phone rings and the doctor’s nurse telling me they do not have the results of the second biopsy and doctor may not see me. But she says go ahead and come down here and I will let you know when you get here, if he will see you. By the time we got in the doctor had the results.The first thing you notice is when you sign in no one wants to leave the sign in place until they are acknowledged by someone who can actually get you into see the doctor. With each person who signs in, including me the receptionist has to tell you to go sit down and let the person behind you sign in. The second thing you notice is that for every patient there is someone with them, the caregiver and they are very important and everyone in this situation knows this. The caregiver does all the hard and frustrating things and does there best to keep you off the wall. In my case Patty signs me in, talks to the front desk people, makes my appointments takes care of any phones calls and all I have to do is just show up and let them poke, prod, stick me and promise not to bite the doctor. I have been told it is ok hit and kick them but I can not bite them. They seem to like to poke their fingers in, around and down my throat. I get the impression this will be something I am to expect from now on. The news was absolute and without recourse I definitely had cancer, there was no mistakes in the previous diagnosis. The doctor did not tell us anything we did not already think, but his news left us with no wiggle room there was not going to be any mistakes or sorry we told you the wrong thing, it isn’t just a lump it is cancer and we are going to radiate and poison you to fix this.
Friday August 29th, we are seeing are third oncologist of the week this time it is the ENT surgeon. This appointment is at UCI medical center which is one of those mega medical centers. Unfortunately for me and all of the other head and neck cancer patients who have to see the ENT surgeon you have go to the appointment in the regular ENT clinic not at the cancer center. The front office people do not care and they have no problem letting you know just how much you are bothering them by having to nerve to check in with them and god forbid you actually ask them a question. Now I know not every place is like this and the Chow cancer center is world class, but up to this point the ENT front office staff at UCI is by the far is the least caring and most incompetent group of people I have been exposed to at any medical center.
Patty and I were there and a man walked in by himself, he was very thin and about my age. You could tell he was well into or maybe just complete his radiation for his neck cancer his neck was very brown; his skin had the look of leather and kind of a turkey neck. Now the reason I tell you this is that two days before we had just been with the radiation oncologist who had described that this is what was going to happen to me when the radiation started to kick in. When I looked at him and in his eyes, I saw what could be me in just a few short months, now maybe I will not be that thin but he was me and I was him. I am about to walk in his shoes and begun the same journey he is already on.
The big difference between him and me, is that he was alone and I have Patty. Like most cancer patients he had his binder with all of his stuff. Not unlike the binder Patty keeps for me; it has biopsy reports, test results, authorizations, doctor’s cards and appointment times.
Patty was up paying to co pay and they called him up and the receptionist tells him they can not see him because the doctor’s visit had not been approved by the insurance company and that each visit has to be pre approved, and this visit was not yet approved. You could see the anger and rage in his face and the frustration was far beyond anything I have yet to face. He was alone, his hearing was almost completely gone from the radiation and this uncaring and indifferent woman was screaming at him. He pulls out from his notebook what he believed was the authorization to see the doctor but she was not having any of it and he tuned and walked out, one more time, one more disappointment and no one cares and no one to help him.
I looked at Patty and her at me we were both crying and we both wanted to help, but we to paralyzed and afraid to help. We have are own problems and he was gone, Patty and I went into our appointment into the examining room and we did get to see the doctor.
He was your typical surgeon capable, cocky but still caring and I didn’t bite his hand; he is going to do a surgical biopsy on my tongue, which is thought to be the primary site of the cancer. He is going to make sure there are no other tumors hiding anywhere they do not already know about, and this biopsy will also rule out a second form of cancer inside of me called lymphoma, as well. He does not think it is but he would rather error on the side of caution. The biopsy should be September 11th I will send an update after that.
One last thought on the man in the ENT office, I know there was nothing I could have done to help that man see the doctor and I am not sure what I would have said, but I wish I would have said something. I will always regret not trying to reach out and I will always wonder how he is doing.
So now I am sure you may think I am depressed when actually I am as happy as I can be at this time in my life. I have my wife and some of my family with me. I have sisters and a very extended family and friends that care and love me, I think maybe I am starting to understand a little bit about what Lou Gehrig meant when he said he was “the luckiest man in the world”, I to believe that with all my heart
Somewhere over the Pacific Ocean with love Michael
Week one was results from the first biopsy and the words highly likely were used, a doctors appointment and another biopsy with the doctor asking for a definitive prognosis.
Week two started Monday morning with a 9:00 AM doctor’s appointment with the medical oncologist. We are on the way to the appointment and my cell phone rings and the doctor’s nurse telling me they do not have the results of the second biopsy and doctor may not see me. But she says go ahead and come down here and I will let you know when you get here, if he will see you. By the time we got in the doctor had the results.The first thing you notice is when you sign in no one wants to leave the sign in place until they are acknowledged by someone who can actually get you into see the doctor. With each person who signs in, including me the receptionist has to tell you to go sit down and let the person behind you sign in. The second thing you notice is that for every patient there is someone with them, the caregiver and they are very important and everyone in this situation knows this. The caregiver does all the hard and frustrating things and does there best to keep you off the wall. In my case Patty signs me in, talks to the front desk people, makes my appointments takes care of any phones calls and all I have to do is just show up and let them poke, prod, stick me and promise not to bite the doctor. I have been told it is ok hit and kick them but I can not bite them. They seem to like to poke their fingers in, around and down my throat. I get the impression this will be something I am to expect from now on. The news was absolute and without recourse I definitely had cancer, there was no mistakes in the previous diagnosis. The doctor did not tell us anything we did not already think, but his news left us with no wiggle room there was not going to be any mistakes or sorry we told you the wrong thing, it isn’t just a lump it is cancer and we are going to radiate and poison you to fix this.
Friday August 29th, we are seeing are third oncologist of the week this time it is the ENT surgeon. This appointment is at UCI medical center which is one of those mega medical centers. Unfortunately for me and all of the other head and neck cancer patients who have to see the ENT surgeon you have go to the appointment in the regular ENT clinic not at the cancer center. The front office people do not care and they have no problem letting you know just how much you are bothering them by having to nerve to check in with them and god forbid you actually ask them a question. Now I know not every place is like this and the Chow cancer center is world class, but up to this point the ENT front office staff at UCI is by the far is the least caring and most incompetent group of people I have been exposed to at any medical center.
Patty and I were there and a man walked in by himself, he was very thin and about my age. You could tell he was well into or maybe just complete his radiation for his neck cancer his neck was very brown; his skin had the look of leather and kind of a turkey neck. Now the reason I tell you this is that two days before we had just been with the radiation oncologist who had described that this is what was going to happen to me when the radiation started to kick in. When I looked at him and in his eyes, I saw what could be me in just a few short months, now maybe I will not be that thin but he was me and I was him. I am about to walk in his shoes and begun the same journey he is already on.
The big difference between him and me, is that he was alone and I have Patty. Like most cancer patients he had his binder with all of his stuff. Not unlike the binder Patty keeps for me; it has biopsy reports, test results, authorizations, doctor’s cards and appointment times.
Patty was up paying to co pay and they called him up and the receptionist tells him they can not see him because the doctor’s visit had not been approved by the insurance company and that each visit has to be pre approved, and this visit was not yet approved. You could see the anger and rage in his face and the frustration was far beyond anything I have yet to face. He was alone, his hearing was almost completely gone from the radiation and this uncaring and indifferent woman was screaming at him. He pulls out from his notebook what he believed was the authorization to see the doctor but she was not having any of it and he tuned and walked out, one more time, one more disappointment and no one cares and no one to help him.
I looked at Patty and her at me we were both crying and we both wanted to help, but we to paralyzed and afraid to help. We have are own problems and he was gone, Patty and I went into our appointment into the examining room and we did get to see the doctor.
He was your typical surgeon capable, cocky but still caring and I didn’t bite his hand; he is going to do a surgical biopsy on my tongue, which is thought to be the primary site of the cancer. He is going to make sure there are no other tumors hiding anywhere they do not already know about, and this biopsy will also rule out a second form of cancer inside of me called lymphoma, as well. He does not think it is but he would rather error on the side of caution. The biopsy should be September 11th I will send an update after that.
One last thought on the man in the ENT office, I know there was nothing I could have done to help that man see the doctor and I am not sure what I would have said, but I wish I would have said something. I will always regret not trying to reach out and I will always wonder how he is doing.
So now I am sure you may think I am depressed when actually I am as happy as I can be at this time in my life. I have my wife and some of my family with me. I have sisters and a very extended family and friends that care and love me, I think maybe I am starting to understand a little bit about what Lou Gehrig meant when he said he was “the luckiest man in the world”, I to believe that with all my heart
Somewhere over the Pacific Ocean with love Michael
Cancer News
I have started this over and over again and I can not find an easy way to say what I need to say. A few months ago I found a lump in my neck it was just after a root canal and the doctor thought that they were related. I got the “let’s watch this and if this goes away in a few weeks, then we will do an MRI.
The weeks went by and lump didn’t go away. I had the MRI and the radiologist report stated that the lump needed further evaluation.
I was then sent to an ENT who ordered a biopsy which has come back as highly like to be Squamous Cell Carcinoma, which in it self is confusing because if you look it up you will find that that most of the information on it will be related to skin cancer, mine is of the type that is found in a lymph nodes in my neck.
So what does this all mean?
First Patty and I are going to Hawaii with Rick, Marcela (our future daughter-in-law, which Patty and I are very happy about), Brian and Erin August 30 – September 6th.
Between now and then another biopsy, doctors appointments with a surgeon and an oncologist.
This is serous but manageable while no one knows the long term outcome; this is not life threatening at this point. I wish I could tell you more but I don’t really know much more, we are waiting for insurance authorizations and doctors at this point.
I am going from being as normal as you can be with something like this to very mad to sad, confused, scared and then the process starts again.
Patty and I will keep you updated as we know more.
Love Michael (AKA, Seal)
The weeks went by and lump didn’t go away. I had the MRI and the radiologist report stated that the lump needed further evaluation.
I was then sent to an ENT who ordered a biopsy which has come back as highly like to be Squamous Cell Carcinoma, which in it self is confusing because if you look it up you will find that that most of the information on it will be related to skin cancer, mine is of the type that is found in a lymph nodes in my neck.
So what does this all mean?
First Patty and I are going to Hawaii with Rick, Marcela (our future daughter-in-law, which Patty and I are very happy about), Brian and Erin August 30 – September 6th.
Between now and then another biopsy, doctors appointments with a surgeon and an oncologist.
This is serous but manageable while no one knows the long term outcome; this is not life threatening at this point. I wish I could tell you more but I don’t really know much more, we are waiting for insurance authorizations and doctors at this point.
I am going from being as normal as you can be with something like this to very mad to sad, confused, scared and then the process starts again.
Patty and I will keep you updated as we know more.
Love Michael (AKA, Seal)
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