Good Morning Friends,
I am back to talk about the past 774 days when I was incommunicado.
There are many tales to tell about edema, low sodium, the results of
over-medication, falls that resulted in some fairly serious wounds and brusing, trips to the hospital and ICU and my opinion about "modern medicine".
There are stories about just how low I can get, dragging my loved ones with me.
Perhaps the most important things I would like to tell you about is the decision to stop therapy and just try to live as normally as possible.
The other thing (and most significant I believe) is about Jo Ann, my caregiver and the strength she has given me and shown in herself through this whole ordeal.
For the most part, I won't be writing every day as in the past, but it is my intention to write at least once or twice a week,the good Lord willing.We will just have to see how it goes.
Thank you for all of your inquiries that never seemed to get answered. They helped us get through this rough period.
For now, that is all.
Doug
January 12, 2010 - Day 267
Good evening everyone.
I am okay, it is just that the last month has been kind of rough as the chemo starts to take its toll, causing severe fatigue and upsetting what little balance is left in my body.
I just didn't have the energy or where with all to sit down and write the blog.
I will try and start posting on a regular basis again tomorrow during the day.
Thanks for your concern.
Doug
I am okay, it is just that the last month has been kind of rough as the chemo starts to take its toll, causing severe fatigue and upsetting what little balance is left in my body.
I just didn't have the energy or where with all to sit down and write the blog.
I will try and start posting on a regular basis again tomorrow during the day.
Thanks for your concern.
Doug
December 15, 2009 - Day 239
The fog is rolling in and unless the sun comes out soon and burns it off quickly, I am heading into the big crash just like last week.
I was hoping that this would not occur again this week, but it looks like an inevitable outcome.
I guess that I can assume that this is the way things will be from now on.
Two good days and five lost days, not a very good ratio, but one I will have to learn to live with for a while.
Maybe it won't be quite as bad, but maybe it will be worse although I can't imagine what that would be like.
I don't think much of anything could be worse than last week.
We are going to see a pulmonary doctor tomorrow in order to try and start establishing some kind of coordinated care program for me along with Dr. Abe and a gastro guy to be named later.
I will make every effort to write tomorrow and let you know how it goes.
If I disappear for a couple of days, you'll know that I climbed back into my cocoon to ride out the week and I will be back as soon as I morph back into human form.
I was hoping that this would not occur again this week, but it looks like an inevitable outcome.
I guess that I can assume that this is the way things will be from now on.
Two good days and five lost days, not a very good ratio, but one I will have to learn to live with for a while.
Maybe it won't be quite as bad, but maybe it will be worse although I can't imagine what that would be like.
I don't think much of anything could be worse than last week.
We are going to see a pulmonary doctor tomorrow in order to try and start establishing some kind of coordinated care program for me along with Dr. Abe and a gastro guy to be named later.
I will make every effort to write tomorrow and let you know how it goes.
If I disappear for a couple of days, you'll know that I climbed back into my cocoon to ride out the week and I will be back as soon as I morph back into human form.
December 14, 2009 - Day 238
Hi, I am back. I don't for how long, depends on how hard the Velcade and Dexamethasone hit me this week I guess. If it is anything like last week, I may have to disappear again for a while.
I would like to thank those of you who missed my blog and inquired via email to Jo or by phone as to what was going on with me last week. You are appreciated for your caring attitude towards Jo Ann and me.
Round 3 Dose 3 of my Velcade/Dex was taken today so I am a little wound up from the steroids and feeling my oats this evening, so I am able to write again.
I don't know where to begin to describe what last week was like or even why it happened.
As usual, the steroids started kicking in by early evening Monday resulting in no sleep that night and a groggy transition into the day on Tuesday and by early evening, into a fatigue that I have never experienced in my body.
The fatigue was so intense that it paralyzed me at times, making it almost impossible to get out of the bed without assistance from Jo Ann.
A couple of weeks ago, I wrote about what I called "The Stare" to describe what I thought was a chemo crash.
Let me tell you, I had no idea what it was really all about until last week.
Little did I realize that I could lose such touch with everything around me and still be conscious.
I had no idea that I could feel so helpless and need to rely on other people to the extent that I did last Wednesday through Sunday.
I woke up today feeling half-way decent, but it is time to start it all over again.
I don't know what is going to happen this week, but I will in a couple of days.
We talked to Dr. Abe about it today and he explained that Velcade is a drug that ramps itself up the longer that you take it and that a crash would not be that unusual.
Add to that, the Lexapro I started last week, a double helping of Dexamethasone that we added into my regimen and you have a pretty potent cocktail flowing in your bloodstream.
As I keep saying, my treatment is all a grand experiment.
We mix up the ingredients, give them a shake, stand back and see what happens.
This may not seem like the best way to do things, but that is all I have for now.
Stay tuned in for the results of the latest trial, we will play it by ear, day to day.
I would like to thank those of you who missed my blog and inquired via email to Jo or by phone as to what was going on with me last week. You are appreciated for your caring attitude towards Jo Ann and me.
Round 3 Dose 3 of my Velcade/Dex was taken today so I am a little wound up from the steroids and feeling my oats this evening, so I am able to write again.
I don't know where to begin to describe what last week was like or even why it happened.
As usual, the steroids started kicking in by early evening Monday resulting in no sleep that night and a groggy transition into the day on Tuesday and by early evening, into a fatigue that I have never experienced in my body.
The fatigue was so intense that it paralyzed me at times, making it almost impossible to get out of the bed without assistance from Jo Ann.
A couple of weeks ago, I wrote about what I called "The Stare" to describe what I thought was a chemo crash.
Let me tell you, I had no idea what it was really all about until last week.
Little did I realize that I could lose such touch with everything around me and still be conscious.
I had no idea that I could feel so helpless and need to rely on other people to the extent that I did last Wednesday through Sunday.
I woke up today feeling half-way decent, but it is time to start it all over again.
I don't know what is going to happen this week, but I will in a couple of days.
We talked to Dr. Abe about it today and he explained that Velcade is a drug that ramps itself up the longer that you take it and that a crash would not be that unusual.
Add to that, the Lexapro I started last week, a double helping of Dexamethasone that we added into my regimen and you have a pretty potent cocktail flowing in your bloodstream.
As I keep saying, my treatment is all a grand experiment.
We mix up the ingredients, give them a shake, stand back and see what happens.
This may not seem like the best way to do things, but that is all I have for now.
Stay tuned in for the results of the latest trial, we will play it by ear, day to day.
December 13, 2009
Hi Everyone-
It's Jo Ann posting tonight. Many of you have called, while others have expressed concerns through email. Doug is doing OK. He is completely fatiqued from his last round of Velcade. For the past five days he has rested in bed with little energy to move. He has not opened his computer since his last post. I thought I would write to let you all know that he is hanging in there. We will be heading to Dr. Abe's office tomorrow, presumably for the next round of Velcade. We will see if Dr. Abe thinks Doug should take a week off before moving forward, or perhaps we will continue with the regime as planned. We will let you know.
I thank you all for your kindness and attention. It is very comforting to know that you all are there, watching over Doug from a distance. We both appreciate your caring so very much.
Until tomorrow, have a good night.
Jo Ann
It's Jo Ann posting tonight. Many of you have called, while others have expressed concerns through email. Doug is doing OK. He is completely fatiqued from his last round of Velcade. For the past five days he has rested in bed with little energy to move. He has not opened his computer since his last post. I thought I would write to let you all know that he is hanging in there. We will be heading to Dr. Abe's office tomorrow, presumably for the next round of Velcade. We will see if Dr. Abe thinks Doug should take a week off before moving forward, or perhaps we will continue with the regime as planned. We will let you know.
I thank you all for your kindness and attention. It is very comforting to know that you all are there, watching over Doug from a distance. We both appreciate your caring so very much.
Until tomorrow, have a good night.
Jo Ann
December 8, 2009 - Day 232
Tonight's blog will be fairly short because I am feeling extremely low physically, perhaps the side effects from the Lexapro that I started taking on Monday. A couple of people I know that take it, told me that I might expect the first couple of weeks to be full of surprises that will eventually calm down. So what else is new in this grand experiment?
We went to see the cardiologist today and once again, my blood pressure was fairly low.
Dr. Ravitsky believes that it may be due to the way that I have been dosing on the Furosemide.
I have been taking 40mg in the morning and 20mg at night and he thinks that the 40mg may be too much at one time, so we are going to try 20mg three times a day and see if that helps.
The theory is that I am removing the fluids too fast, causing the low blood pressure.
Imagine that, we want some edema to help straighten this out.
The second reason for a condensed blog is that I have been researching a topic that has piqued my interest and deservedly warrants a discussion with all the facts and figures.
I haven't been able to put it all together yet, but hope to have it ready for tomorrow.
The subject is the insane and incomprehensible laws and restrictions that the FDA places on new drugs and techniques in the medical field as well as drugs that have been around since the beginning of time.
There are at least three items for this discussion, the most controversial being the medical marijuana issue which seems to stir emotions akin to abortion and the Middle East wars.
For me, it's a no brainer.
If there is something out there can give comfort or help me or someone else, it should be our choice whether to participate in its use or not.
I understand the mission of the FDA, but they need to have a more flexible policy when it makes sense.
Chronic disease treatment for the most part is experimental, so why not make it easier for people to participate in it?
Most of us are living experimental lives and would be more than willing to take the chances associated with experimental treatment, drugs and techniques.
Just give us the chance.
We went to see the cardiologist today and once again, my blood pressure was fairly low.
Dr. Ravitsky believes that it may be due to the way that I have been dosing on the Furosemide.
I have been taking 40mg in the morning and 20mg at night and he thinks that the 40mg may be too much at one time, so we are going to try 20mg three times a day and see if that helps.
The theory is that I am removing the fluids too fast, causing the low blood pressure.
Imagine that, we want some edema to help straighten this out.
The second reason for a condensed blog is that I have been researching a topic that has piqued my interest and deservedly warrants a discussion with all the facts and figures.
I haven't been able to put it all together yet, but hope to have it ready for tomorrow.
The subject is the insane and incomprehensible laws and restrictions that the FDA places on new drugs and techniques in the medical field as well as drugs that have been around since the beginning of time.
There are at least three items for this discussion, the most controversial being the medical marijuana issue which seems to stir emotions akin to abortion and the Middle East wars.
For me, it's a no brainer.
If there is something out there can give comfort or help me or someone else, it should be our choice whether to participate in its use or not.
I understand the mission of the FDA, but they need to have a more flexible policy when it makes sense.
Chronic disease treatment for the most part is experimental, so why not make it easier for people to participate in it?
Most of us are living experimental lives and would be more than willing to take the chances associated with experimental treatment, drugs and techniques.
Just give us the chance.
December 7, 2009 - Day 231
A little bit of history fact for today.
"...Deceember 7, 2009, a day which will live in infamy ..."
The Infamy Speech was delivered at 12:30 p.m. on December 8, 1941, by United States President Franklin D. Roosevelt, one day after the Empire of Japan's attack on Pearl Harbor Naval Base, Hawaii. The name derives from the first line of the speech.
Within an hour of the speech, Congress passed a formal declaration of war against Japan and officially brought the U.S. into World War II. The address is regarded as one of the most famous American political speeches of the 20th century.
Perhaps no other date is more significant in the history of the United States other than July 4.
The courses of millions of lives, the path of technology and the eye opening cruelty of war were forever changed in the minds of an innocent United States on this day.
Please remember what happened and who it happened to on this day.
Dr. Abe's was on tap for today. Vitals were okay, my blood pressure was a little low again, but no one seemed that concerned so neither am I.
My blood numbers were good again which is real bonus. I may be dodging some of the peripheral problems associated with chemotherapy and amyloidosis.
Today I received Dose 2 Round 3 of Velcade/Dexamethasone.
It seems to have hit pretty hard but it is manageable.
When we arrived home from Dr. Abe's, I went to bed and slept a good part of the afternoon away.We'll see how the night goes as the Dex starts to kick in.
I am pretty tired right now so maybe I'll be able to sleep despite the steroids.
Tomorrow we go to see Dr. Ravitsky, my cardiologist, for his turn at poking and prodding. Everything he is concerned with seems to be working properly (except my BP) right now so there is no reason to expect anything but a decent report.
I also started the Lexapro today, but it can take several weeks to reach full potential.
We'll just have to wait and see.
"...Deceember 7, 2009, a day which will live in infamy ..."
The Infamy Speech was delivered at 12:30 p.m. on December 8, 1941, by United States President Franklin D. Roosevelt, one day after the Empire of Japan's attack on Pearl Harbor Naval Base, Hawaii. The name derives from the first line of the speech.
Within an hour of the speech, Congress passed a formal declaration of war against Japan and officially brought the U.S. into World War II. The address is regarded as one of the most famous American political speeches of the 20th century.
Perhaps no other date is more significant in the history of the United States other than July 4.
The courses of millions of lives, the path of technology and the eye opening cruelty of war were forever changed in the minds of an innocent United States on this day.
Please remember what happened and who it happened to on this day.
Dr. Abe's was on tap for today. Vitals were okay, my blood pressure was a little low again, but no one seemed that concerned so neither am I.
My blood numbers were good again which is real bonus. I may be dodging some of the peripheral problems associated with chemotherapy and amyloidosis.
Today I received Dose 2 Round 3 of Velcade/Dexamethasone.
It seems to have hit pretty hard but it is manageable.
When we arrived home from Dr. Abe's, I went to bed and slept a good part of the afternoon away.We'll see how the night goes as the Dex starts to kick in.
I am pretty tired right now so maybe I'll be able to sleep despite the steroids.
Tomorrow we go to see Dr. Ravitsky, my cardiologist, for his turn at poking and prodding. Everything he is concerned with seems to be working properly (except my BP) right now so there is no reason to expect anything but a decent report.
I also started the Lexapro today, but it can take several weeks to reach full potential.
We'll just have to wait and see.
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