Well, This has been a week!
I have had major events to run for six of the seven days. A busy time.
This got me to thinking.........what could I possibly do with the other day?
Thankfully, Dr. Patel, the oncologist, has come up with a solution. I can have chemo. Whew. I was worried about too much spare time.
We met with Dr. Patel last Thursday. The good news is that he was not concerned about my lymph nodes, but he was concerned about the liver. He made it clear that chemo is in order, not the maintenance kind, but rather the full event with Bob for two days every other week. We are looking at 4 sessions, followed by another petscan and then we will go on to maintenance for as long as appropriate and then perhaps other treatments. We start back next Tuesday.
The reality is that I will be doing something about cancer for the rest of my life. I intend to take advantage of the medicare/health system for many years to come.
Meanwhile, we are not giving up on alternate therapies. We have begun the first phase of the Bob Wright protocol. Some wonderful tasting sulphur crystals twice a day. I have experienced many things that have questionable taste, but this may take the cake. The research manager says that if you can't smell it, you can't taste it. I am not sure. I have developed an ability to just chug it down quickly, like I do with some other supplemental things. Just think what I could do if I drank!
This will be followed up in the next day or so with something called liph, which is an alkaline concentrate. Apparently cancer cells do not like alkaline. I have gradually moved my alkaline reading up to 7.5 or better from a starting point of about 6. I will also be continuing to drink alkaline water of 9.5 ph. We'll teach those cancer cells!
I don't drink often, but when I do, I chug sulphur crystals in distilled water. I aim to be the healthiest, if not the most interesting, colon cancer patient in the world.
So, I am looking at more trips to Morton Plant. I am hoping to work out how to minimize the stress on the research manager. She has begun to do more cooking of creative things that are good for me. You should try "Crustless Quiche." I love it. It beats my cheese omelets hands down. Obviously, a woman's place is in the kitchen! :) Oh and on the computer.
Thanks to the research manager for all she does. And thanks to so many of you that send me encouraging notes. My son reminded me in an email this morning that "Where there's a Gill there's a way!"
Wednesday, January 17, 2018
Wednesday, January 10, 2018
Jewish Prayers and more
I have had two days now to figure what to write in my blog this evening.
I was getting ready to wind down my blog and then on Monday, I learned that a new set of blogs is called for.
I had my blood work and the petscan done on Monday morning and was finished by about 1:00. The normal procedure is that I ask for a CD of the scan and then take it home for the research manager's analysis. I then go back to the radiology center on Tuesday morning to get a report on the findings. I had to wait for the CD because the "CD" person was at lunch. When she finally came back and produced the CD, I was surprised to learn that the report was done also.
The good news is that my blood work was very good, in some respects the best ever. (The CEA would not be ready till Tuesday afternoon though.)
The more challenging news is that the scan found "numerous" mestastases on the liver and also significant mestastinal activity in the lymph nodes.
What does this mean?
It means that I will get to write more blog entries than anticipated.
It means that in the last three months, the dormant cancer cells have resurfaced and are having a party in parts of my body.
It means that the oncologist will most certainly want to recommence chemo in some form.
It means that we will investigate alternatives to chemo and simultaneous treatments to go with the chemo to maximize the positive potential going forward.
Meanwhile, the CEA marker results came back with a reading of 2.2 ( 0 to 2.5 is normal), my second lowest reading. For what it is worth.
We meet with the oncologist tomorrow to discuss his thoughts and observations. We are viewing the meeting as exploratory, not decision making, and will continue with our own research and possibly a second opinion re alternative strategies. Then, in a week or so, we will make a decision.
One of the strategies from www.cancertutor.com is called the Bob Wright protocol. Apparently, it is superior to the Bob Left protocol, which makes sense if you have ever seen a left handed person attempting to bid while playing bridge.
Today, I was offered "Jewish" prayers without the prayer warrior knowing the outcome. I chose to keep this news quiet until tonight. And now that the cancerous cat is out of the bag, I welcome all prayers and positive thoughts for insight and wisdom as to how to proceed and for healing by whatever method is made obvious to us.
Thank you for your support and interest. I love you all for the energy that you give me.
I was getting ready to wind down my blog and then on Monday, I learned that a new set of blogs is called for.
I had my blood work and the petscan done on Monday morning and was finished by about 1:00. The normal procedure is that I ask for a CD of the scan and then take it home for the research manager's analysis. I then go back to the radiology center on Tuesday morning to get a report on the findings. I had to wait for the CD because the "CD" person was at lunch. When she finally came back and produced the CD, I was surprised to learn that the report was done also.
The good news is that my blood work was very good, in some respects the best ever. (The CEA would not be ready till Tuesday afternoon though.)
The more challenging news is that the scan found "numerous" mestastases on the liver and also significant mestastinal activity in the lymph nodes.
What does this mean?
It means that I will get to write more blog entries than anticipated.
It means that in the last three months, the dormant cancer cells have resurfaced and are having a party in parts of my body.
It means that the oncologist will most certainly want to recommence chemo in some form.
It means that we will investigate alternatives to chemo and simultaneous treatments to go with the chemo to maximize the positive potential going forward.
Meanwhile, the CEA marker results came back with a reading of 2.2 ( 0 to 2.5 is normal), my second lowest reading. For what it is worth.
We meet with the oncologist tomorrow to discuss his thoughts and observations. We are viewing the meeting as exploratory, not decision making, and will continue with our own research and possibly a second opinion re alternative strategies. Then, in a week or so, we will make a decision.
One of the strategies from www.cancertutor.com is called the Bob Wright protocol. Apparently, it is superior to the Bob Left protocol, which makes sense if you have ever seen a left handed person attempting to bid while playing bridge.
Today, I was offered "Jewish" prayers without the prayer warrior knowing the outcome. I chose to keep this news quiet until tonight. And now that the cancerous cat is out of the bag, I welcome all prayers and positive thoughts for insight and wisdom as to how to proceed and for healing by whatever method is made obvious to us.
Thank you for your support and interest. I love you all for the energy that you give me.
Wednesday, January 3, 2018
COLD
I want to begin this note with an apology. Apparently almost none of you knew what an "eavestrough" is. The research manager did not know either, but predictably, she quickly did some research and exclaimed "Oh, you mean a gutter!" I guess eavestrough is a Canadian word. I think it sounds more sophisticated than "gutter."
I know that some of you will scoff, but it is COLD here in Florida. It is almost freezing where I live and it is actually freezing further north.
For the first two days of this COLD spell, the research manager decided that we did not need to put the heat on and I was COLD. While I was out of the house, I heard that the city was opening places for people that could not get heat at home. I was delighted to hear that and headed for home to get my bag packed and head off to a shelter I was relieved to get home and find out that the heat had been turned on. It is still cold though.
There are some good aspects to the cold weather.
I have not lost a tennis game all week.
The pain of being COLD makes my shingles pain seem like nothing. Update: I think that the shingles are not recurring, just that the pain is continuing (sometimes better, sometimes worse.)
Everyone around me is now sensitive to cold and so I do not feel alone. Though, my fingers may be slightly more sensitive than others' fingers.
However, we are still dealing with bowel issues, although things are largely under control.
As we approach the petscan and CEA test on Monday, we are focused on maintaining the regimen. I commented to the research manager that my morning routine is almost more than my stomach can deal with. There are so many items that get consumed between wake up and 11 am. I expect it is worth it, though.
I still am anxiously/eagerly looking forward to next week's tests.
Thanks for your encouragement, support and prayers.
I know that some of you will scoff, but it is COLD here in Florida. It is almost freezing where I live and it is actually freezing further north.
For the first two days of this COLD spell, the research manager decided that we did not need to put the heat on and I was COLD. While I was out of the house, I heard that the city was opening places for people that could not get heat at home. I was delighted to hear that and headed for home to get my bag packed and head off to a shelter I was relieved to get home and find out that the heat had been turned on. It is still cold though.
There are some good aspects to the cold weather.
I have not lost a tennis game all week.
The pain of being COLD makes my shingles pain seem like nothing. Update: I think that the shingles are not recurring, just that the pain is continuing (sometimes better, sometimes worse.)
Everyone around me is now sensitive to cold and so I do not feel alone. Though, my fingers may be slightly more sensitive than others' fingers.
However, we are still dealing with bowel issues, although things are largely under control.
As we approach the petscan and CEA test on Monday, we are focused on maintaining the regimen. I commented to the research manager that my morning routine is almost more than my stomach can deal with. There are so many items that get consumed between wake up and 11 am. I expect it is worth it, though.
I still am anxiously/eagerly looking forward to next week's tests.
Thanks for your encouragement, support and prayers.
Wednesday, December 27, 2017
Christmas Morning in Okeechobee
Hmmm, I got some pushback this past week from people telling that I don't know anything about cold. Apparently the northern states, Canada and even England offer far colder climes than Florida. Who knew?!
Since my last post, we have had Christmas. This Christmas was an interesting one that found the research manager and me eating luke warm eggs (me) and a bagel (the research manager) in the breakfast room of the Best Western Hotel in Okeechobee, Florida. We were there on our way home from visiting one of the research manager's clients in Jupiter. It was a wonderful visit and well worth it, despite ending up having breakfast in these circumstances. We met a few others at breakfast. After "Merry Christmas," the next thing uttered was "What are doing in Okeechobee on Christmas morning?"
I was inspired to write a part fiction-part reality story about our time. Email me at cfgill@verizon.net if you would like to read it. It is not funny, just a story.
We spent the rest of the way home playing "Is it open?" This is an exciting pasttime in which we predict, observe and celebrate stores/restaurants that are open on Christmas Day. All the McDonalds around Okeechobee were closed so that their parking lots could be repaved. Interesting, eh? We sure do live an exciting life!
What is happening with me?
Chemo brain is an issue. I often forget my cell phone and recently left car keys on the floor of the car.
I am getting Eavestroughs. See below.
My neuropathy continues. My fingers still drive me nuts.
We have added bone broth and coloidal silver to the regime this week. All of these things are helpful. I kind of imagine all the vitamins and supplements meeting each day in my stomach planning how to attack cancer cells and/or build up the immune system.
It is now in less than two weeks that I will have a petscan and CEA reading. I am beginning to get anxious, not so much about the results as to get the tests done.
What are Eavestroughs? Eavestroughs are on the edge of the roof, which is covered with shingles. And, so, I think I am on the edge of getting shingles back. Not sure. Not 100%. But I have slight feelings in that regard. The pain is slightly more elevated and there are a few suspicious spots..
But life is good. I am back to red shirts after two days of other colors in view of my cold.
I was even given a "It's a red shirt day" mug for Christmas to use at the club.
Since my last post, we have had Christmas. This Christmas was an interesting one that found the research manager and me eating luke warm eggs (me) and a bagel (the research manager) in the breakfast room of the Best Western Hotel in Okeechobee, Florida. We were there on our way home from visiting one of the research manager's clients in Jupiter. It was a wonderful visit and well worth it, despite ending up having breakfast in these circumstances. We met a few others at breakfast. After "Merry Christmas," the next thing uttered was "What are doing in Okeechobee on Christmas morning?"
I was inspired to write a part fiction-part reality story about our time. Email me at cfgill@verizon.net if you would like to read it. It is not funny, just a story.
We spent the rest of the way home playing "Is it open?" This is an exciting pasttime in which we predict, observe and celebrate stores/restaurants that are open on Christmas Day. All the McDonalds around Okeechobee were closed so that their parking lots could be repaved. Interesting, eh? We sure do live an exciting life!
What is happening with me?
Chemo brain is an issue. I often forget my cell phone and recently left car keys on the floor of the car.
I am getting Eavestroughs. See below.
My neuropathy continues. My fingers still drive me nuts.
We have added bone broth and coloidal silver to the regime this week. All of these things are helpful. I kind of imagine all the vitamins and supplements meeting each day in my stomach planning how to attack cancer cells and/or build up the immune system.
It is now in less than two weeks that I will have a petscan and CEA reading. I am beginning to get anxious, not so much about the results as to get the tests done.
What are Eavestroughs? Eavestroughs are on the edge of the roof, which is covered with shingles. And, so, I think I am on the edge of getting shingles back. Not sure. Not 100%. But I have slight feelings in that regard. The pain is slightly more elevated and there are a few suspicious spots..
But life is good. I am back to red shirts after two days of other colors in view of my cold.
I was even given a "It's a red shirt day" mug for Christmas to use at the club.
Wednesday, December 20, 2017
New novel titles
The man who came home with a cold.
That is the story for this week. I got back from a weekend away and by Tuesday, I had a sore throat. It is now in my nasal pasaages. This is serious......it might be a non-red shirt day today.
The fingers that came home not liking cold.
It seems as if my fingers are getting more neuropathic (if that is a word). I am increasingly sensitive. We are now drinking bone broth which helps the finger nails among other things, perhaps a residual benefit to neuropathy?
The avocadoes that taste better cold.
We have put avocadoes that are ripening too fast in the fridge and they taste pretty good. Himalayan sea salt also adds to the flavor.
The tea that comes out of the cold.
We store the chaga tea in the fridge and also the Essiac tea. I drink both as I leave to out in the morning and as I go to bed at night.
The man who comes down from the cold.
Leave some cookies out for Santa. Gluten free, no sugar! Stevia is ok. I was actually given such a thing by my barber (made especially for me!)
Greetings that are not cold.
Warm holiday greetings to you all. I hope this coming weekend is a good one for all.
That is the story for this week. I got back from a weekend away and by Tuesday, I had a sore throat. It is now in my nasal pasaages. This is serious......it might be a non-red shirt day today.
The fingers that came home not liking cold.
It seems as if my fingers are getting more neuropathic (if that is a word). I am increasingly sensitive. We are now drinking bone broth which helps the finger nails among other things, perhaps a residual benefit to neuropathy?
The avocadoes that taste better cold.
We have put avocadoes that are ripening too fast in the fridge and they taste pretty good. Himalayan sea salt also adds to the flavor.
The tea that comes out of the cold.
We store the chaga tea in the fridge and also the Essiac tea. I drink both as I leave to out in the morning and as I go to bed at night.
The man who comes down from the cold.
Leave some cookies out for Santa. Gluten free, no sugar! Stevia is ok. I was actually given such a thing by my barber (made especially for me!)
Greetings that are not cold.
Warm holiday greetings to you all. I hope this coming weekend is a good one for all.
Wednesday, December 13, 2017
One positive thought
It is Wednesday night. It is below 50 degrees Fahrenheit outside. I am finally home after being away for 12 hours and I am tired.
I am reacting badly to the cold. My fingers feel the neuropathy as much as ever. I have been trying to cut back on the shingles pain medication to one a day and right now, that seems like a mistake. My digestive system is a little off. We are experimenting with the "bile salts," which is actually called Cholestyramine. We have to try to take it well away from when I take supplements and vitamins so that the medicine does not bind to the supplements and reduce their effectiveness.
You would think that all this would have me down. Only partly because this past Saturday, I attended a conference on the newest possible treatment for cancer - immunotherapy. This surely is the solution to not ever having chemotherapy, right? I may even qualify for a trial of an immunotherapy treatment for those that have had colorectal cancer (that's me) and have a serious risk of recurrence. (I will keep you posted on this.)
Well, not so fast, It seems immunotherapy tends to be for those with not many alternatives and.......at this point in its development, it is at best 20% effective and may be as low as 5% effective.
Of course, all of the above is bound to get you down.
My sister, Cindy, gets down .............she uses it for quilts. She mentioned the idea of a "Positive Quilt," in which quilters each make a square with a positive thought and all the squares are sown together to make the "Positive Quilt" to help those with illness.
I have a positive thought. I am going away for 4 days to take it easy. It has been a busy time and I am very much looking forward to a rest.
And so, I am far from down and in fact, I am looking forward to a warm soak and an early sleep. What is more, I understand that the temperature will rise 10 degrees over night and so, tennis is in the cards before I leave.
Life is ultimately good. I may even be able to wear the red hat that I was given this week.
I am reacting badly to the cold. My fingers feel the neuropathy as much as ever. I have been trying to cut back on the shingles pain medication to one a day and right now, that seems like a mistake. My digestive system is a little off. We are experimenting with the "bile salts," which is actually called Cholestyramine. We have to try to take it well away from when I take supplements and vitamins so that the medicine does not bind to the supplements and reduce their effectiveness.
You would think that all this would have me down. Only partly because this past Saturday, I attended a conference on the newest possible treatment for cancer - immunotherapy. This surely is the solution to not ever having chemotherapy, right? I may even qualify for a trial of an immunotherapy treatment for those that have had colorectal cancer (that's me) and have a serious risk of recurrence. (I will keep you posted on this.)
Well, not so fast, It seems immunotherapy tends to be for those with not many alternatives and.......at this point in its development, it is at best 20% effective and may be as low as 5% effective.
Of course, all of the above is bound to get you down.
My sister, Cindy, gets down .............she uses it for quilts. She mentioned the idea of a "Positive Quilt," in which quilters each make a square with a positive thought and all the squares are sown together to make the "Positive Quilt" to help those with illness.
I have a positive thought. I am going away for 4 days to take it easy. It has been a busy time and I am very much looking forward to a rest.
And so, I am far from down and in fact, I am looking forward to a warm soak and an early sleep. What is more, I understand that the temperature will rise 10 degrees over night and so, tennis is in the cards before I leave.
Life is ultimately good. I may even be able to wear the red hat that I was given this week.
Wednesday, December 6, 2017
Great excitement - a new rubber duckie
You know that things are decent when the most noteworthy event of the week is the gift of a fifth rubber ducky, This one is a little bigger than the others and is black and white striped. He arrived with a name...."Zed" because he is a Canadian duckie. This is a good thing because, we just ordered 20 pounds of bath salts instead of the 10 pounds that we have been ordering and they came without a rubber duckie. The 10 pound ones come with a duck
Things have been good this week. I still get tired, have slight, but improving shingles pain and the finger neuropathy is ever present. Did I tell you that I eat an orange each morning before I play tennis so that I have sticky hands and can hold on to my racket?
Speaking of tennis, I am improving slightly, moving a little faster and actually have won a few sets, including two today.....but that was against two women.........oops*...... er, I won playing with a woman yesterday. So there.
I am wondering about the research manager, however. Each day, I slice open the avocado for the day. Today, she was looking on the internet for an avocado slicer. Whoever, he was, he was only charging $2. So, not likely much of a threat. Besides, I could use the $2. However, she then went on to look for a collard green stripper. I think this was one of those Australian guys (Thunder from Down Under) who uses collard greens as part of his act.
That's okay. My receipt from Earth Origins yesterday charged $4.99 for "Blondie." I explained that was for spending 5 minutes with Blondie in one of the back rooms. The research manager did not believe me. It was actually a creative employee's technique to charge me a little less for my carrot juice which I get every day. I am actually starting to enjoy it.
All of our routines are in place. I am starting to take salads with me to the bridge club when I am going to be there over dinner. I am looking forward to January 8 when I get a petscan and bloodwork.
Meanwhile, I am doing this blog a little early since I will be out late tonight at a Christmas event.
*I will go right to bed when I get home so that I can play tennis in the morning if those women don't kill me first.
Things have been good this week. I still get tired, have slight, but improving shingles pain and the finger neuropathy is ever present. Did I tell you that I eat an orange each morning before I play tennis so that I have sticky hands and can hold on to my racket?
Speaking of tennis, I am improving slightly, moving a little faster and actually have won a few sets, including two today.....but that was against two women.........oops*...... er, I won playing with a woman yesterday. So there.
I am wondering about the research manager, however. Each day, I slice open the avocado for the day. Today, she was looking on the internet for an avocado slicer. Whoever, he was, he was only charging $2. So, not likely much of a threat. Besides, I could use the $2. However, she then went on to look for a collard green stripper. I think this was one of those Australian guys (Thunder from Down Under) who uses collard greens as part of his act.
That's okay. My receipt from Earth Origins yesterday charged $4.99 for "Blondie." I explained that was for spending 5 minutes with Blondie in one of the back rooms. The research manager did not believe me. It was actually a creative employee's technique to charge me a little less for my carrot juice which I get every day. I am actually starting to enjoy it.
All of our routines are in place. I am starting to take salads with me to the bridge club when I am going to be there over dinner. I am looking forward to January 8 when I get a petscan and bloodwork.
Meanwhile, I am doing this blog a little early since I will be out late tonight at a Christmas event.
*I will go right to bed when I get home so that I can play tennis in the morning if those women don't kill me first.
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