Hi,
I have added an update near the bottom from my birthday, January 7th.
I haven't said much this month because I've been busy creating another blog about my McDowell ancestors. Remember the big photo of Fallingwater River that was at the beginning of this blog? It's decorating the "McDowell Family of White County Tennessee" now.
The new picture on this blog is from the Mission Inn in Riverside, California; it seems evocative to have my journey symbolized by a stairway and a door. (LOL. Don't read the sign at the bottom, or you will find out the door doesn't lead anywhere. Just pretend there is still a garden at the top of the stairs.) The photo is from our anniversary dinner at the Mission Inn in 2009.
I am doing well. My next oncologist appointment is not until February. I am convinced that the tumor in my liver is smaller than several months ago. I had a little Chardonnay with a Christmas luncheon on December 21, and it became a demonstration of how small my tumor had become.
In January 2010, on my birthday I drank one inch of Reisling (a white wine) with my dinner. I knew there was a possibility of having a reaction to the alcohol with a carcinoid tumor in my liver. I wasn't sure what was going to happen, so I drank just a small amount of wine. I have read of every reaction to alcohol from turning red to having a carcinoid crisis.
In the middle of the night I woke up drenched in sweat. My hair was wet and my pillowcase was wet. Somehow the alcohol in the wine stimulated the carcinoid so that it poured hormones into my bloodstream that produced excessive perspiration.
Last week on the 21st, I drank about one inch of white wine from a white wine glass. I slept through the night just fine. When I woke up in the morning a single trickle of perspiration ran down my chest. That small reaction tells me that the cancer has shrunk; it was too small to produce much hormone, so my reaction was less than 11 months ago.
January 7: When I went out to eat on my birthday, I tried a glass of Reisling with my dinner. This was a larger glass of wine, probably because the restaurant was charging $7.25 for it! Since I don't drink very often, I can feel the effects after only a few ounces, so I stopped at half a glass. That night I had no unpleasant reaction to the wine at all!
So now my scans, blood tests, and my body's own reactions match! The tumor is smaller than it was at the beginning of 2010. That's a good way to end the year! Thank you, Father. I love you.
Monday, December 27, 2010
Wednesday, December 8, 2010
Chromogranin A and Octreotide Scan Results
Hi,
Here's a recap on how I am doing. After becoming sick from Carcinoid on an increasing basis from August 25, 2010 through November 14, 2010, I am now doing much better. Much of the improvement is due to using Welchol almost daily in addition to Octreotide. Prior to the Welchol I was sick every day and had many activities cancelled. I also believe my tumor has gotten smaller; I don't know how else my Chromogranin A values could be below 5!
However, I have been flushing more often for two weeks. Almost every time I walk past a mirror my face is pink. This is another symptom of hormones being dumped into my bloodstream by my tumor. My oncologist, Dr. Z, says the flushing can be caused by serotonin, histamines, or several other chemicals. We have never checked for histamines in my bloodstream; that's one we can check next. I may be flushing more because I was giving myself shots at home every 8 hours for one month instead of getting one long-lasting shot every 28 days. Also, I went off Octreotide in order to have the scans done last week.
I went to the oncologist today. I had an Octreoscan done on November 29-30, then my blood was drawn on December 3. Usually, after my scans are done, my blood levels of my cancer markers are high because I have to go off my usual cancer medication. Please see the previous post for the explanation.
Chromogranin A (CgA) and gastrin are the two cancer markers for carcinoid that sometimes show up in abnormal amounts in my blood tests. [I am trying to type this in columns, but blogspot doesn't seem to do that, so I am working on something that will be organized.]
Here are some past numbers:
Normal Range FASTING CgA : 0-50 ng/mL; Gastrin < or ="100">
[Right here I had 2 paragraphs of data showing my cancer markers for 2009 and 2010. After a few weeks they disappeared. I don't know how I did that! However, in general the numbers for Chromogranin A were varied from 162 to about 50 ng/mL during 2009. For 2010 the numbers began to drop down from 40 to 20 to 15 then 8, 7, 3, 2.8 and 1.5. So praise the Lord! My cancer markers dropped precipitously!]
The great news is that last week, after going off of Octreotide for my scans, my Chromogranin A was down to 1.5 ng/mL. No new tumors were found in the scans, so that for once, my scans and my cancer markers match! The tumors are small and the production of the hormones is down.
Thank you, Father. I know how you love me.
I looked back at the blog I wrote after my pastor prayed for me on October 24, 2010. Possibly this good result from my scan and my blood work is from that night. God began shrinking my tumor down so that the hormones in my blood return to normal even when I wasn't on my medication.
Here's a recap on how I am doing. After becoming sick from Carcinoid on an increasing basis from August 25, 2010 through November 14, 2010, I am now doing much better. Much of the improvement is due to using Welchol almost daily in addition to Octreotide. Prior to the Welchol I was sick every day and had many activities cancelled. I also believe my tumor has gotten smaller; I don't know how else my Chromogranin A values could be below 5!
However, I have been flushing more often for two weeks. Almost every time I walk past a mirror my face is pink. This is another symptom of hormones being dumped into my bloodstream by my tumor. My oncologist, Dr. Z, says the flushing can be caused by serotonin, histamines, or several other chemicals. We have never checked for histamines in my bloodstream; that's one we can check next. I may be flushing more because I was giving myself shots at home every 8 hours for one month instead of getting one long-lasting shot every 28 days. Also, I went off Octreotide in order to have the scans done last week.
I went to the oncologist today. I had an Octreoscan done on November 29-30, then my blood was drawn on December 3. Usually, after my scans are done, my blood levels of my cancer markers are high because I have to go off my usual cancer medication. Please see the previous post for the explanation.
Chromogranin A (CgA) and gastrin are the two cancer markers for carcinoid that sometimes show up in abnormal amounts in my blood tests. [I am trying to type this in columns, but blogspot doesn't seem to do that, so I am working on something that will be organized.]
Here are some past numbers:
Normal Range FASTING CgA : 0-50 ng/mL; Gastrin < or ="100">
[Right here I had 2 paragraphs of data showing my cancer markers for 2009 and 2010. After a few weeks they disappeared. I don't know how I did that! However, in general the numbers for Chromogranin A were varied from 162 to about 50 ng/mL during 2009. For 2010 the numbers began to drop down from 40 to 20 to 15 then 8, 7, 3, 2.8 and 1.5. So praise the Lord! My cancer markers dropped precipitously!]
The great news is that last week, after going off of Octreotide for my scans, my Chromogranin A was down to 1.5 ng/mL. No new tumors were found in the scans, so that for once, my scans and my cancer markers match! The tumors are small and the production of the hormones is down.
Thank you, Father. I know how you love me.
I looked back at the blog I wrote after my pastor prayed for me on October 24, 2010. Possibly this good result from my scan and my blood work is from that night. God began shrinking my tumor down so that the hormones in my blood return to normal even when I wasn't on my medication.
Tuesday, November 30, 2010
What Happens during an Octreoscan?
Hi,
New Information! 3/28/2014 Things have changed in the 3 years since I wrote this. I find my cancer center doesn't take as long to do the Octreoscan now. I had the 360 degree Spect done only at the end of the 24-hour scan. Also, the scanner goes faster, so the length of time is not as long. At Cedars-Sinai in Los Angeles,they do Octreoscans at 4, 24 and 72 hours. But the real news is that this scan is obsolete, and will be replaced by the 68-Gallium Dotatate PET/CT in a year or two in the USA. It is already used in Europe and Asia. I would recommend the newest scan there is and at the largest medical center you can get to.
Today I finished a round of Octreoscans, the nuclear medicine test for carcinoid and other endocrine tumors. Thank you for praying for my composure while I had all my "pictures" taken. I thought I would explain what happens when I go in for a scan. I don't think I've ever seen it spelled out, and I noticed someone found my blog by asking what an Octreoscan was. So I'll explain it from my perspective.
But first, I found a new verse today. I am almost done reading through Romans. This is Romans 15:13. May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. That is how I want to live: To go on with my life as if I expect to live a "normal lifespan". To hope that I can do most of the things I want to get done and that I will enjoy the time while I am here. Also, to find my greatest joy in knowing Christ Jesus my Lord.
When I go in for an Octreoscan, I have to go off of the LAR (long-acting injection) of Octreotide for 8 weeks. I have to start giving myself the injections of Octreotide Acetate in my belly every 8 hours. Also, three days before the scans I have to stop all Octreotide treatments because it can cause a false positive on the scan. Octreotide automatically goes straight to carcinoid tumors. It attaches to the tumors, and if it is in your body during the scan, then the radioactive Octreotide mixes with it and makes it appear that you have tumors. So all Octreotide has to clear out of your system before your scan.
The Octreoscan is a nuclear medicine test. I usually arrive about 9:15 am and get injected by 10:00 am with the radioactively-labelled Octreotide. I don't have to fast, but I am supposed to drink plenty of water the day before and the day of the first scan. After having 5 Octreoscans I have learned that the "be well-hydrated" is code for "don't be constipated." The staff won't say that before you come in, but a couple of the technicians have told me that I should eat lightly (She suggested I just have soup and salad for supper) and drink lots of water, so that the bowel will be easier for the radiologist to see inside of. It's hard to see any tumors when the bowel is filled up.
Note: I have learned since writing this post that there is another reason for being well-hydrated. It helps to flush the radio-active material out of your body. So you need to be drinking water the day before and the day of the injection. This is the post that is read by someone every day, so I want to have correct information here. 1/11/11
The first set of scans is done 4 hours after the radioactive Octreotide is injected. So I sit and read, shop, have lunch, visit my daughter, etc. Back at the laboratory there are actually three sets of scans to go through. You can listen to a CD player or ipod as long as the headphones are made of plastic because you can attach them to your head, and leave the metal part out of the range of the scanner.
1. The first scan I have is always the Nuclear Gamma Camera. This takes about 1 hour for the full body scan. This does not emit any radiation; you emit the radiation! The camera detects the radiation and it shows up on the computer monitor the tech is looking at. It is normal for the liver, kidneys, bladder, spleen, etc. to light up from the radiation. It is the job of the radiologist to interpret what is abnormal absorption of of the radioactive Octreotide.
The first few times I had this scan I felt a little claustrophobic because the panel comes to an inch above my face. The good part is that you slowly scoot out from under the panel,and your face comes out first.
2. The second test I have is a 360 degree CT scan. This one is 30-40 minutes long. It's cool because the panels rotate around around your body. It is not claustrophobic because there's wide open spaces between the panels.
3. The last scan is a nuclear medicine scan. It's also 30-40 minutes and seems to go quickly after the other two,
The next day I come back again and go through the same scans. There's no more injecting the drug because the doctor is watching to see what happens 24 hours after the injection.
New Information! 3/28/2014 Things have changed in the 3 years since I wrote this. I find my cancer center doesn't take as long to do the Octreoscan now. I had the 360 degree Spect done only at the end of the 24-hour scan. Also, the scanner goes faster, so the length of time is not as long. At Cedars-Sinai in Los Angeles,they do Octreoscans at 4, 24 and 72 hours. But the real news is that this scan is obsolete, and will be replaced by the 68-Gallium Dotatate PET/CT in a year or two in the USA. It is already used in Europe and Asia. I would recommend the newest scan there is and at the largest medical center you can get to.
Today I finished a round of Octreoscans, the nuclear medicine test for carcinoid and other endocrine tumors. Thank you for praying for my composure while I had all my "pictures" taken. I thought I would explain what happens when I go in for a scan. I don't think I've ever seen it spelled out, and I noticed someone found my blog by asking what an Octreoscan was. So I'll explain it from my perspective.
But first, I found a new verse today. I am almost done reading through Romans. This is Romans 15:13. May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. That is how I want to live: To go on with my life as if I expect to live a "normal lifespan". To hope that I can do most of the things I want to get done and that I will enjoy the time while I am here. Also, to find my greatest joy in knowing Christ Jesus my Lord.
When I go in for an Octreoscan, I have to go off of the LAR (long-acting injection) of Octreotide for 8 weeks. I have to start giving myself the injections of Octreotide Acetate in my belly every 8 hours. Also, three days before the scans I have to stop all Octreotide treatments because it can cause a false positive on the scan. Octreotide automatically goes straight to carcinoid tumors. It attaches to the tumors, and if it is in your body during the scan, then the radioactive Octreotide mixes with it and makes it appear that you have tumors. So all Octreotide has to clear out of your system before your scan.
The Octreoscan is a nuclear medicine test. I usually arrive about 9:15 am and get injected by 10:00 am with the radioactively-labelled Octreotide. I don't have to fast, but I am supposed to drink plenty of water the day before and the day of the first scan. After having 5 Octreoscans I have learned that the "be well-hydrated" is code for "don't be constipated." The staff won't say that before you come in, but a couple of the technicians have told me that I should eat lightly (She suggested I just have soup and salad for supper) and drink lots of water, so that the bowel will be easier for the radiologist to see inside of. It's hard to see any tumors when the bowel is filled up.
Note: I have learned since writing this post that there is another reason for being well-hydrated. It helps to flush the radio-active material out of your body. So you need to be drinking water the day before and the day of the injection. This is the post that is read by someone every day, so I want to have correct information here. 1/11/11
The first set of scans is done 4 hours after the radioactive Octreotide is injected. So I sit and read, shop, have lunch, visit my daughter, etc. Back at the laboratory there are actually three sets of scans to go through. You can listen to a CD player or ipod as long as the headphones are made of plastic because you can attach them to your head, and leave the metal part out of the range of the scanner.
1. The first scan I have is always the Nuclear Gamma Camera. This takes about 1 hour for the full body scan. This does not emit any radiation; you emit the radiation! The camera detects the radiation and it shows up on the computer monitor the tech is looking at. It is normal for the liver, kidneys, bladder, spleen, etc. to light up from the radiation. It is the job of the radiologist to interpret what is abnormal absorption of of the radioactive Octreotide.
The first few times I had this scan I felt a little claustrophobic because the panel comes to an inch above my face. The good part is that you slowly scoot out from under the panel,and your face comes out first.
2. The second test I have is a 360 degree CT scan. This one is 30-40 minutes long. It's cool because the panels rotate around around your body. It is not claustrophobic because there's wide open spaces between the panels.
3. The last scan is a nuclear medicine scan. It's also 30-40 minutes and seems to go quickly after the other two,
The next day I come back again and go through the same scans. There's no more injecting the drug because the doctor is watching to see what happens 24 hours after the injection.
Sunday, November 28, 2010
Carcinoid Status Update
It's scanning time again. Tomorrow I go in for an Octreoscan. That is the special nuclear medicine scan done to detect carcinoid tumors. The tumors do not necessarily show up in a PET or CT, probably because they can be small. I had a scan done on November 20, 2008 that showed abnormal absorbtion of the radioactive compound in the dome of my liver. That would indicate carcinoid tumors there. Then I began using Octreotide as medication, and the tumors got smaller.
I have not had an Octreoscan done this year because all through 2009 they did not show anything. [Plus, they cost my Insurance company over $10,000.] So, this year we tried doing an MRI in the spring. An MRI exposes me to less radiation, too. The images from the MRI were very clear and show a couple lesions in my liver that were only 2mm. However, those are not the carcinoid tumors. The surgeon removed one of those lesions in 2008 just so my oncologist could be reassured about what it was, and it was harmless. So, the MRI found structures that are only 2mm, which was nice to know. The two carcinoid tumors that I have had removed have been less than 1mm.
So Monday and Tuesday I'll be back at UCI Medical Center in Orange, California. I'll arrive at 9:15 and be hooked up to some radioactive Octreotide about 10:00 am. Then I wait about 4 hours for the first scan. I'm free to move about the campus or go shopping across the street. At 2:00 pm the technician does the first scan. I'll probably leave about 4:00 pm.
Tuesday morning I return at 9:00 or 10:00 to have the second scan done, and we go through the whole routine again. It takes about 1.5 hours for the longer scan that follows one that's only 40 minutes long. Immediately after the scan, I will go across to the Chao Family Cancer Center and have an injuction of my long-acting Octreotide. Then I should be set for medication for 28 days.
Lately, my lab results keep coming back normal. My Chromogranin A is below 10 and my gastrin is normal. That's a great frustration for many carcinoid patients. (I follow what they write on Cancer Compass.com.) Some patients don't get diagnosed because the high amounts of hormones in their bloodstream don't always show up when they are at the lab. I joke about hiring a phlebotomist to follow me around and draw blood right when I get sick. I have been reading comments lately that the ourpouring of chemicals into our blood is in cycles, not constant. That would match what I have been finding.
Since I was put on Welchol I have been much better. Thanks for your prayers. It seems to work very well for me, and I have not been sick for a few weeks. So I continue to use the Welchol and Octreotide to treat carcinoid. So as long as I can take a 3-hour nap five days a week, I'm doing OK.
Love,
Sharon
I have not had an Octreoscan done this year because all through 2009 they did not show anything. [Plus, they cost my Insurance company over $10,000.] So, this year we tried doing an MRI in the spring. An MRI exposes me to less radiation, too. The images from the MRI were very clear and show a couple lesions in my liver that were only 2mm. However, those are not the carcinoid tumors. The surgeon removed one of those lesions in 2008 just so my oncologist could be reassured about what it was, and it was harmless. So, the MRI found structures that are only 2mm, which was nice to know. The two carcinoid tumors that I have had removed have been less than 1mm.
So Monday and Tuesday I'll be back at UCI Medical Center in Orange, California. I'll arrive at 9:15 and be hooked up to some radioactive Octreotide about 10:00 am. Then I wait about 4 hours for the first scan. I'm free to move about the campus or go shopping across the street. At 2:00 pm the technician does the first scan. I'll probably leave about 4:00 pm.
Tuesday morning I return at 9:00 or 10:00 to have the second scan done, and we go through the whole routine again. It takes about 1.5 hours for the longer scan that follows one that's only 40 minutes long. Immediately after the scan, I will go across to the Chao Family Cancer Center and have an injuction of my long-acting Octreotide. Then I should be set for medication for 28 days.
Lately, my lab results keep coming back normal. My Chromogranin A is below 10 and my gastrin is normal. That's a great frustration for many carcinoid patients. (I follow what they write on Cancer Compass.com.) Some patients don't get diagnosed because the high amounts of hormones in their bloodstream don't always show up when they are at the lab. I joke about hiring a phlebotomist to follow me around and draw blood right when I get sick. I have been reading comments lately that the ourpouring of chemicals into our blood is in cycles, not constant. That would match what I have been finding.
Since I was put on Welchol I have been much better. Thanks for your prayers. It seems to work very well for me, and I have not been sick for a few weeks. So I continue to use the Welchol and Octreotide to treat carcinoid. So as long as I can take a 3-hour nap five days a week, I'm doing OK.
Love,
Sharon
Tuesday, November 16, 2010
Finding Encouragement in the Bible
Hi,
As I looked over that stats on this blog, I saw someone had located My Journey to Joy by entering the key words "finding encouragement." They were linked to my earlier blog about finding encouragement on the Internet. I wonder if this helped them. It recounted how I was in pain from carcinoid and looked on my computer for some hope. I didn't mention that I had come here with a prayer in my heart that God would lead me to something that would work for me.
My earlier posting recounted how I found a blog belonging to a Christian carcinoid patient: dgwhealthnews.blogspot.com. I was encouraged to find this because it meant I was not alone. Also, Dennis G.W. writes such an excellent email called "The Encourager" which is attached to his blog. I hope that reader went on to read Dennis' blog.
I can't go back and fix the past, but I can offer some encouragement here. One time when I felt like my cancer battle had me wandering in the wilderness, I had prayed hard for help. The next morning I was making a cup of tea, and to my amazement a preacher on TV spoke exactly to my situation. I didn't even know who he was. I had turned on the TV to see the news, and God sent me the word I needed.
It was a sermon that referenced Psalm 57. In this psalm David had fled from Saul and was hiding in a cave. David had been anointed the next King of Israel while Saul was still the current King. David writes:
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of your wings
Until the disaster has passed.
I cry out to God Most High
to God, Who fulfills His purpose for me.
He sends from the heavens and saves me
rebuking those who hotly pursue me;
God sends His love and His faithfulness.
I am in the midst of lions;
I lie among ravenous beasts--
men whose teeth are spears and arrows,
whose tongues are sharp swords.
Be exalted, O God, above the heavens;
let your glory be over all the earth.
They spread a net for my feet--
I was bowed down in distress.
They dug a pit in my path--
but they themselves have fallen into it.
My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.
Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.
I will praise You, O Lord, among the nations;
I will sing of You among the peoples.
For great is Your love, reaching to the heavens;
your faithfulness reaches to the skies.
Be exalted, O God, above the heavens;
let Your glory be over all the earth.
Psalm 57: 1-11
A psalm of David.
NIV except that I capitalize pronouns refering to God, and the NIV does not.
Other Psalms of encouragement include 40, 91 and many more. That preacher that I just happened to find on TV was Joel Osteen. At that time I did not know who he was. God just made sure I was there to hear what he had to say.
Thanks,
Sharon
As I looked over that stats on this blog, I saw someone had located My Journey to Joy by entering the key words "finding encouragement." They were linked to my earlier blog about finding encouragement on the Internet. I wonder if this helped them. It recounted how I was in pain from carcinoid and looked on my computer for some hope. I didn't mention that I had come here with a prayer in my heart that God would lead me to something that would work for me.
My earlier posting recounted how I found a blog belonging to a Christian carcinoid patient: dgwhealthnews.blogspot.com. I was encouraged to find this because it meant I was not alone. Also, Dennis G.W. writes such an excellent email called "The Encourager" which is attached to his blog. I hope that reader went on to read Dennis' blog.
I can't go back and fix the past, but I can offer some encouragement here. One time when I felt like my cancer battle had me wandering in the wilderness, I had prayed hard for help. The next morning I was making a cup of tea, and to my amazement a preacher on TV spoke exactly to my situation. I didn't even know who he was. I had turned on the TV to see the news, and God sent me the word I needed.
It was a sermon that referenced Psalm 57. In this psalm David had fled from Saul and was hiding in a cave. David had been anointed the next King of Israel while Saul was still the current King. David writes:
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of your wings
Until the disaster has passed.
I cry out to God Most High
to God, Who fulfills His purpose for me.
He sends from the heavens and saves me
rebuking those who hotly pursue me;
God sends His love and His faithfulness.
I am in the midst of lions;
I lie among ravenous beasts--
men whose teeth are spears and arrows,
whose tongues are sharp swords.
Be exalted, O God, above the heavens;
let your glory be over all the earth.
They spread a net for my feet--
I was bowed down in distress.
They dug a pit in my path--
but they themselves have fallen into it.
My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.
Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.
I will praise You, O Lord, among the nations;
I will sing of You among the peoples.
For great is Your love, reaching to the heavens;
your faithfulness reaches to the skies.
Be exalted, O God, above the heavens;
let Your glory be over all the earth.
Psalm 57: 1-11
A psalm of David.
NIV except that I capitalize pronouns refering to God, and the NIV does not.
Other Psalms of encouragement include 40, 91 and many more. That preacher that I just happened to find on TV was Joel Osteen. At that time I did not know who he was. God just made sure I was there to hear what he had to say.
Thanks,
Sharon
Friday, November 12, 2010
Wow! Thanks for Reading Me in China!
Hi,
I just discovered there is a way to view the numbers of people reading my blog, and what countries they are in. I was aware I have friends and relatives in Canada, Australia, and the USA who read my blog. What is super amazing are the other countries where people have found this blog. That's the wonder of the Internet.
So, "Hello!" to those of you in Hungary, South Korea, China, Slovenia, Austria, Italy, the UK and everywhere else! I don't know how you found My Journey to Joy.
Actually, I am aware how a few of you found it. You clicked on the hyperlink from the Carcinoid Message Board on Cancer Compass. Some of you were searching Dave Thomas and carcinoid cancer, or Steve Jobs and NET. Some I'm glad you found me. That is really neat.
I hope I encouraged some of you or gave you information that was helpful. I know that many of us are on the same journey, but at different points along the way. Thank you to my loved ones who check here just to see how I am doing, and to pray for me.
Please leave a comment when you stop by again. It would be fun to know your first name and where you are living. Last year I got the nicest comment from Richy F.; he found me on Facebook. I still treasure that.
God Bless You All,
Sharon
I just discovered there is a way to view the numbers of people reading my blog, and what countries they are in. I was aware I have friends and relatives in Canada, Australia, and the USA who read my blog. What is super amazing are the other countries where people have found this blog. That's the wonder of the Internet.
So, "Hello!" to those of you in Hungary, South Korea, China, Slovenia, Austria, Italy, the UK and everywhere else! I don't know how you found My Journey to Joy.
Actually, I am aware how a few of you found it. You clicked on the hyperlink from the Carcinoid Message Board on Cancer Compass. Some of you were searching Dave Thomas and carcinoid cancer, or Steve Jobs and NET. Some I'm glad you found me. That is really neat.
I hope I encouraged some of you or gave you information that was helpful. I know that many of us are on the same journey, but at different points along the way. Thank you to my loved ones who check here just to see how I am doing, and to pray for me.
Please leave a comment when you stop by again. It would be fun to know your first name and where you are living. Last year I got the nicest comment from Richy F.; he found me on Facebook. I still treasure that.
God Bless You All,
Sharon
Wednesday, November 3, 2010
How my Medication works
When I picked up my Octreotide (Sandostatin) today, I noticed the excellent list of uses for Octreotide. Nurses are aware that it is used for diarrhea, but most people don't know it is the treatment for some rare cancers.
This is a quote from the brochure that comes with the prescription when the Rx is purchased at Rite Aid.:
"Octreotide is used to treat watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g. carcinoid tumors, vasoactive intestinal tumors) that are found usually in the intestine and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. By decreasing watery diarrhea, octreotide works to reduce the loss of body fluids and minerals... This drug is not a cure for these conditions. This medication is usually used with other treatment (e.g. surgery, radiation, other drugs). "
Since I wrote last I have added Welchol to my treatment. Last week on Monday as I was telling my cardiologist about my increased carcinoid symptoms, he suggested that I use Welchol to combat the diarrhea and decrease my LDL a little more. (It's at 69, yes, 69. The man's a fanatic about low LDL. Actually, he wants my LDL low because my HDL is at 39, and my triglycerides stay above 150 unless I am being REALLY good. Also, the people having heart attacks now have LDL at 130.) I the idea about Welchol past my internist, and he thought it was a great idea. He said patients complain bitterly about how constipating Welchol is, and he had used it before in a patient before who suffered from a nasty digestive disease.
So, what is Welchol? It comes in a packet and you mix it with water. It is tiny resin beads that absorb cholesterol from the intestine. Having used it for 9 days, it seems to be working like a great little plug. I continued to have diarrhea for 8 days after starting Welchol, but it slows everything down, so I didn't get as dehydrated. Also, once I begin to get sick, I take the Welchol, and it seems to work in about 90 minutes. Before this, it was taking 2-3 hours before I would stop being sick. So I am better.
Thank you for your prayers. I am sure prayer and God's influence helped Dr. Chen come up with the idea of the Welchol. Also, The Lord has been blessing me with some days that are either really good all morning up until 1 pm like yesterday. Or a day like today when my cognitive function was impaired until the afternoon,and then I began to feel better. How I would like to get by brain, prayer, and Bible study all together, so I write a blog that is worthy of Him.
Love,
Sharon
This is a quote from the brochure that comes with the prescription when the Rx is purchased at Rite Aid.:
"Octreotide is used to treat watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g. carcinoid tumors, vasoactive intestinal tumors) that are found usually in the intestine and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. By decreasing watery diarrhea, octreotide works to reduce the loss of body fluids and minerals... This drug is not a cure for these conditions. This medication is usually used with other treatment (e.g. surgery, radiation, other drugs). "
Since I wrote last I have added Welchol to my treatment. Last week on Monday as I was telling my cardiologist about my increased carcinoid symptoms, he suggested that I use Welchol to combat the diarrhea and decrease my LDL a little more. (It's at 69, yes, 69. The man's a fanatic about low LDL. Actually, he wants my LDL low because my HDL is at 39, and my triglycerides stay above 150 unless I am being REALLY good. Also, the people having heart attacks now have LDL at 130.) I the idea about Welchol past my internist, and he thought it was a great idea. He said patients complain bitterly about how constipating Welchol is, and he had used it before in a patient before who suffered from a nasty digestive disease.
So, what is Welchol? It comes in a packet and you mix it with water. It is tiny resin beads that absorb cholesterol from the intestine. Having used it for 9 days, it seems to be working like a great little plug. I continued to have diarrhea for 8 days after starting Welchol, but it slows everything down, so I didn't get as dehydrated. Also, once I begin to get sick, I take the Welchol, and it seems to work in about 90 minutes. Before this, it was taking 2-3 hours before I would stop being sick. So I am better.
Thank you for your prayers. I am sure prayer and God's influence helped Dr. Chen come up with the idea of the Welchol. Also, The Lord has been blessing me with some days that are either really good all morning up until 1 pm like yesterday. Or a day like today when my cognitive function was impaired until the afternoon,and then I began to feel better. How I would like to get by brain, prayer, and Bible study all together, so I write a blog that is worthy of Him.
Love,
Sharon
Sunday, October 24, 2010
It's Me, O Lord, Standing in the Need of Prayer
Hi,
Postscript written 12/2/10: Since I wrote this I have seen the gastroenterologist and begun taking a new medication. My cardiologist started me on Welchol, which I write about in another column. The gastro didn't think I had any other digestive conditions and he thought the Welchol was a good idea. I was nice to see him; we had not seen each other since he did the biopsy that found my first carcinoid tumor. Also, I have resumed taking Nexium and Mobic, which did not cause any of the illness. So my symptoms are much relieved. Thank you for your prayers.
Original Post:
I'm in a quandary. All my labs tests for carcinoid cancer are coming back normal: Chromogranin A, gastrin, even the special urine test I asked my oncologist to do [5-HTP.]
However, the diarrhea is getting worse and worse since August. Wednesday I was sick most of 13 hours from 7am to 8pm. I got a few hours of rest in the middle of the afternoon. I am
giving myself rescue shots of Sandostatin and taking Lomotil the maximum dose my doctor allows. Some days I am not sick, but it has become more common for me to be sick.
Last night I had the faith to believe God might heal me. Sometimes I don't think He is going to heal me because it's been so long since I first got sick. My pastor and others were praying for people during church. He prayed for me and others. Then the pastor said, "This might sound odd, but as I was praying for Brandon, I was told to pray for someone's liver." No one else stepped up, so I did, since my cancer is in my liver. It is exciting to think that God recognized I was there, and He sent a special message to Joel (my pastor) to pray for me.
I haven't felt any different since that prayer, but I know I was prayed for regarding healing. That makes me wonder, what if God is healing me, but I can't tell because of the diarrhea? All the data coming back from the labs shows good results. What if the diarrhea is being caused by something else, and not carcinoid cancer? My doctor and I have considered that possibility, so I have an appointment with a gastro-enterologist on November 15. This week I began to wonder if the diarrhea could be caused by one of the many medications I take.
Therefore I am not taking Mobic or Nexium for a week to see if that improves my digestion at all.
So I appreciate your prayers. Very much.
Sharon
Postscript written 12/2/10: Since I wrote this I have seen the gastroenterologist and begun taking a new medication. My cardiologist started me on Welchol, which I write about in another column. The gastro didn't think I had any other digestive conditions and he thought the Welchol was a good idea. I was nice to see him; we had not seen each other since he did the biopsy that found my first carcinoid tumor. Also, I have resumed taking Nexium and Mobic, which did not cause any of the illness. So my symptoms are much relieved. Thank you for your prayers.
Original Post:
I'm in a quandary. All my labs tests for carcinoid cancer are coming back normal: Chromogranin A, gastrin, even the special urine test I asked my oncologist to do [5-HTP.]
However, the diarrhea is getting worse and worse since August. Wednesday I was sick most of 13 hours from 7am to 8pm. I got a few hours of rest in the middle of the afternoon. I am
giving myself rescue shots of Sandostatin and taking Lomotil the maximum dose my doctor allows. Some days I am not sick, but it has become more common for me to be sick.
Last night I had the faith to believe God might heal me. Sometimes I don't think He is going to heal me because it's been so long since I first got sick. My pastor and others were praying for people during church. He prayed for me and others. Then the pastor said, "This might sound odd, but as I was praying for Brandon, I was told to pray for someone's liver." No one else stepped up, so I did, since my cancer is in my liver. It is exciting to think that God recognized I was there, and He sent a special message to Joel (my pastor) to pray for me.
I haven't felt any different since that prayer, but I know I was prayed for regarding healing. That makes me wonder, what if God is healing me, but I can't tell because of the diarrhea? All the data coming back from the labs shows good results. What if the diarrhea is being caused by something else, and not carcinoid cancer? My doctor and I have considered that possibility, so I have an appointment with a gastro-enterologist on November 15. This week I began to wonder if the diarrhea could be caused by one of the many medications I take.
Therefore I am not taking Mobic or Nexium for a week to see if that improves my digestion at all.
So I appreciate your prayers. Very much.
Sharon
Friday, September 24, 2010
God Expects Me to Keep my Promise
September has been a month where I learned that God really hears what I pray to him. He also hears my promises and expects me to keep them.
When I wrote a blog at the end of the school year, I said that I felt God was calling me to be a woman "of one thing"--someone who spends her time worshiping Him. To minister to the heart of God. I quoted a passage from Captivating, a book by John and Stasi Eldredge. Little did I know that this calling was not a product of my overactive imagination.
In August I was having difficulty exercising at Curves because of a pinched nerve at the base of my spine. I could only use 5 out of 12 machines: the ones for the upper body that don't pull on the base of the spine. I was discouraged because I wanted to reduce my waistline. It seemed like the only thing I could do to burn calories was to go for walks. Because of the excessive heat, I decided to take my walks in the morning about 8:30 and walk the dog at 7:30 pm. My plan was to walk every day immediately after breakfast.
There was just one problem. That mean I set out walking before praying and spending my time with God. When I would return from my walk, I'd get busy with the errands of the day. I didn't spend much time in prayer. I prayed, but I didn't sit in my prayer chair very long and worship God. My gradual study of Acts was crawling along. This isn't the behavior of a woman who wants to minister to the heart of God. So He called me on it.
On the last day of August, I set out for my walk and became sick after passing 5 houses. The next day, I walked past only one house, and turned my right foot. I fell down on my foot and broke the 5th metatarsal. It only took me a few days to figure out what God was telling me.
God has been giving me a greater desire to study the Bible. I have had the book When I Don't Desire God How to Fight for Joy by John Piper since Christmas. I read a chapter of it, then set it aside so that I could read a book by Phillip Yancey. As has happened in the past, when I would need the information, God developed the desire in me to read John Piper's book. When I Don't Desire God, has chapters on how to use Bible study and how to use prayer in the fight for joy. Also, there is a chapter on scripture memorization. So it is just what I need to read now. Thank you, Father, for getting me the book I would need.
Lastly, I have joined Bible Study Fellowship, BSF. They are studying Isaiah this year. We have homework every day and meet together once a week. It's a great study, and I have a friend who has been in BSF a few years. She really enjoys it and has grown so much. I can see the change in her, and she is much happier. God is meeting her needs and meeting her in a variety of places. Like at a shoe store, but that's another story.
A quote from John's book- I also saw, moreover, that it was not my good frame of heart that made my righteousness better, nor yet my bad frame that made my righteousness worse, for my righteousness was Jesus Christ himself, "The same yesterday, today, and forever." Now did the chains fall of my legs indeed. I was loosed from my afflictions and irons; my temptations also fled away; so that from that time those dreadful scriptures of God [about the unforgivable sin] left off to trouble me now; now went I also home rejoicing for the love and grace of God.
John Bunyan Grace Abounding to the Chief of Sinners
When I wrote a blog at the end of the school year, I said that I felt God was calling me to be a woman "of one thing"--someone who spends her time worshiping Him. To minister to the heart of God. I quoted a passage from Captivating, a book by John and Stasi Eldredge. Little did I know that this calling was not a product of my overactive imagination.
In August I was having difficulty exercising at Curves because of a pinched nerve at the base of my spine. I could only use 5 out of 12 machines: the ones for the upper body that don't pull on the base of the spine. I was discouraged because I wanted to reduce my waistline. It seemed like the only thing I could do to burn calories was to go for walks. Because of the excessive heat, I decided to take my walks in the morning about 8:30 and walk the dog at 7:30 pm. My plan was to walk every day immediately after breakfast.
There was just one problem. That mean I set out walking before praying and spending my time with God. When I would return from my walk, I'd get busy with the errands of the day. I didn't spend much time in prayer. I prayed, but I didn't sit in my prayer chair very long and worship God. My gradual study of Acts was crawling along. This isn't the behavior of a woman who wants to minister to the heart of God. So He called me on it.
On the last day of August, I set out for my walk and became sick after passing 5 houses. The next day, I walked past only one house, and turned my right foot. I fell down on my foot and broke the 5th metatarsal. It only took me a few days to figure out what God was telling me.
God has been giving me a greater desire to study the Bible. I have had the book When I Don't Desire God How to Fight for Joy by John Piper since Christmas. I read a chapter of it, then set it aside so that I could read a book by Phillip Yancey. As has happened in the past, when I would need the information, God developed the desire in me to read John Piper's book. When I Don't Desire God, has chapters on how to use Bible study and how to use prayer in the fight for joy. Also, there is a chapter on scripture memorization. So it is just what I need to read now. Thank you, Father, for getting me the book I would need.
Lastly, I have joined Bible Study Fellowship, BSF. They are studying Isaiah this year. We have homework every day and meet together once a week. It's a great study, and I have a friend who has been in BSF a few years. She really enjoys it and has grown so much. I can see the change in her, and she is much happier. God is meeting her needs and meeting her in a variety of places. Like at a shoe store, but that's another story.
A quote from John's book- I also saw, moreover, that it was not my good frame of heart that made my righteousness better, nor yet my bad frame that made my righteousness worse, for my righteousness was Jesus Christ himself, "The same yesterday, today, and forever." Now did the chains fall of my legs indeed. I was loosed from my afflictions and irons; my temptations also fled away; so that from that time those dreadful scriptures of God [about the unforgivable sin] left off to trouble me now; now went I also home rejoicing for the love and grace of God.
John Bunyan Grace Abounding to the Chief of Sinners
Subscribe to:
Posts (Atom)