Quote for October

A Prayer for the Ephesians Eph. 3:14-21

For this reason I kneel before the Father, from whom His whole family in heaven derives its name. I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

Sunday, December 15, 2013

The Diet and Coconut Water Makes a Difference

For more than a month I have been feeling stronger and able to do more things. I think much of it is because of how I am eating. 

First of all, I have been drinking a big glass of coconut water every day which is full of potassium. About 12 ounces, sometimes more. I like the coconut water, and it delays the drinking of my daily Diet Coke.

I began drinking coconut water casually at the suggestion of a cousin during the heat of summer. I began to pursue it at the suggestion of the only other carcinoid patient I have met. We were both in the waiting room at the cancer center, and as soon as she began to talk about her case, I thought it sounded like carcinoid. I told her I had carcinoid and we talked up a storm! She suggested the water because of the potassium. 

In September I began drinking coconut water every day, and I am convinced the potassium is what helped me get my strength back. I also did a little advocating at my local grocery store to carry Kern's plain coconut water. They had been stocking only the chocolate variety for a few weeks, and I kept going home empty-handed. Now I noticed the store has increased the space for the product since they began to carry only the plain variety. It is considered a health drink, so I think more people would prefer it to be plain.

As far as foods, I have continued avoiding things on the list of products high in TYRAMINE and high in SEROTONIN precursors. To avoid making serotonin, it seems we have to avoid TRYPTOPHAN. Please do some reading about this, because I am not an expert. However, I have done pretty well at avoiding "bad" foods in restaurants and at home. The difficulty came when I went to a party with wonderful food and I had no idea what had gone into its preparation. 

To avoid making lots of serotonin, AVOID eating: TURKEY, CHICKEN, PAPAYA, MANGO, SWEET POTATO, CASHEWS, ALMONDS, ALMOST ALL NUTS, COTTAGE CHEESE AND MILK. This is a short list taken from an interview on Carcinoid.org.  

SEROTONIN is the chemical our tumors cause to be made in large quantities that causes diarrhea, so obviously we want to avoid making lots of serotonin.  I have not found that I have a big reaction to eating chicken, but I did have some diarrhea after eating a turkey dinner. I only ate a small amount of turkey (3 oz.) so I wasn't very sick.

TYRAMINE is an amino acid that goes into making the bio-active compounds that make us sick.To avoid TYRAMINE, decrease these foods: CURED MEATS (HAM, HOT DOGS, PEPPERONI); FERMENTED or AGED or PICKLED FOODS; OVERLY OLD FOOD; TAP BEER; AGED CHEESES; SOY SAUCE; SAUERKRAUT; TOFU; BOUILLON, SAUCES and GRAVY.

As food ages the amount of tyramine in it increases. Therefore, one nutritionist suggests we freeze meat on the first day that we buy it unless we are going to eat it that day. Eat fresh produce within 48 hours of purchase. I have not been able to make all these changes yet, but I got my husband to freeze most of our meat. He likes to buy in large quantities and then keep his options open. I am the one who uses the microwave to thaw meat; he just leaves the meat in the refrigerator.  

When I go out to a restaurant, I have had good success with ordering fish and chips or a steak and avoiding dishes made with cheese. The only cheeses I know of that aren't aged are American cheese and Jack cheese. So I need to keep a list of aged cheeses in my purse. However, at a party I had a less pleasant outcome because everything seemed to have cheese or a variety of ingredients in it. Afterwards, I realized that I need to have an eating plan before I go to a party. 

So far my plan to to load up my plate with any fresh fruit or salad that doesn't have cheese in it, eat some plain bread, and choose a simple meat. That's a little hard to do because many cooks soak meat in bouillon or a marinade containing soy sauce. The last luncheon I attended, I ate two types of salad, bread and cake. I didn't get sick, so it worked out OK.
I need to realize the food I eat at the party doesn't have to sustain me forever, and I can eat a little before I even leave home.
Good luck with eating well!

Sunday, November 24, 2013

Diet for Carcinoid

For three weeks I have been learning to follow a diet that is suggested for carcinoid patients. It is lower in two amino acids that are used to make the bio-active compounds that our tumors generate. The amino acids are tyramine and tryptophan. Tryptophan breaks down and increases the serotonin that our tumors create. 

Since I now can see that my tumors create excessive amounts of insulin; serotonin; Chromogranin A; histamines and others; I am trying harder to regulate how I feel.

For the low-tyramine diet I have been eating less of the following things: caffeine, chocolate, aged cheese, all cured meats, and pickled or smoked foods. One of the basic ideas in this diet is that foods gradually breakdown after we get them home, therefore the amount of tyramine increases as the food gets older. One nutritionist suggested eating all fresh produce within 48 hours of buying it. Also, either eat meat the first day it comes home or freeze it. Just putting fruits and vegetables in the refrigerator does not slow down the production of tyramine.

I can't quite eat everything  while it is fresh, but I have been eating less chocolate and drinking less caffeinated tea. (I don't drink coffee because I just don't care for it.) I have 1 cup of caffeinated tea in the morning and the others cups are decaffeinated. I also have only one soda per day. Today at a taco restaurant I got just one glass of iced tea, instead of the usual two. I have not eaten any ham or hot dogs for a month. At a restaurant, I did not chose the meal that had chicken with four cheeses even though it sounded good. I didn't know if they were aged cheeses.

Regarding decreasing serotonin, I have mostly been eating less turkey and chicken. We had our Thanksgiving in America, where a turkey dinner is traditional. I tried to eat only two or three ounces,but I was slightly ill on the next day. I had abdominal pain and diarrhea--which I have only had occasionally lately. So it seemed like there was a correlation between eating the turkey and having problems. If I had eaten my usual portion, I would have been sicker.

Researching a low-serotonin diet required me to look at the diets telling people how to raise serotonin---I guess it's good for some people! 

I have been feeling much better since I began following the diet. I do not have the weakness that plagued me from September 15 to November 15. Instead of having 40% to 60% of my energy, I am functioning at 80% of normal. Now I have to get over being so lazy, and get back to doing more for my family. They did so much for me while I was ill.

I will write more about this next later. If you are interested, a low-tyramine diet or low-serotonin diet can be researched on the Internet.

November 2013

How have you been this month? I'm glad I am better.

From approximately September 15 to November 15, I have been facing new challenges from carcinoid. My tumors have been producing widely varying amounts of either glucagon or insulin. The low blood sugar is frightening, but what I hate the most is the general weakness I have. I stayed home most days because I was afraid of falling if I went to the grocery store, for example. I really appreciate my husband for driving me to doctor appointments, and doing the shopping. 

I have been checking my blood sugar twice a day and giving myself Octreotide shots on a tight schedule every 12 hours. That has kept my sugars from wide variations. I had experienced sugar at 54 on October 3rd; 178 fasting on October 6th; and 59 on October 7. Once my internist saw that, he had me make sure to take all my shots and do it on schedule.
From October 14 through October 28, I gave myself shots every 12 hours, and the wide variations in sugar stopped. There were no exceptions. I am keeping a diary of my symptoms and what I eat. I noticed my face was red and I was hot and sweaty when I woke up, so I shifted my shots around so I was up at 4:00 am to have the Octreotide in my system before I went anywhere. Then I went back to sleep. It helped me tremendously for a couple days. Now I'm not sure it made a lasting difference, but it is something to consider when we are facing many symptoms. Find the best time of day to take your shots.

If you are interested in the numbers, my fasting sugar tends to be high, probably from genetics and from being on Octreotide. My fasting sugar on 2 regular shots ranged from 87 to 113. The day it was 113, I had eaten french fries at dinner the night before. I don't eat fries very often. 

Sooooo, having been successful at stopping the big variations in blood sugar by taking 2 shots per day, I decided to try 3 shots per day.  My prescription is written for 3 shots per day, just in case I suddenly got worse and needed to use more medicine. From October 29 through November 13, I took 3 shots a day and got these fasting blood sugars: 99-117. The last several days,  my fasting sugar was  110, 110, 117,112, 109, and 117. You can see why I went back to giving myself shots every 12 hours.

For a week I have been feeling much stronger. I have been to a play, shopping, and church services without needing my walker. Besides having the blood sugar more regular, I am feeling better all over. 

Thursday, October 24, 2013

A New Activity from My Tumor--Goofy Insulin Levels

As the title suggests my carcinoid tumor or tumors are now affecting my insulin levels. It began several months ago with an episode at my friend Janet's house.

I began to have my usual symptoms from low blood sugar about 12 noon: hunger, weakness, sweating. Janet offered me some crackers to eat, but I rapidly began to feel nausea and a hint of diarrhea coming on. Janet asked if I wanted to lie down in her spare room, but I thought I had better just get home in case the diarrhea began. You know how it is with carcinoid, and I didn't want to be at Janet's house for hours afraid to get in the car.

Basically, without eating anything my condition began to self-correct. I checked with myself every mile as I drove to see if I should pull off the road, but I never got any worse. It is an 8 mile drive, and I began to feel a little less shaky about 4 miles along the way. Another half mile and I was less sweaty. When I had driven 5 or 6 miles toward home, I was much better. I felt hungry and like my blood sugar was about 75, but not like it was 55, and I was shaking.

After hearing this story, my internist prescribed a glucose monitor for me in August, but I didn't use it much until the middle of September when my sugar did a really fast drop down to 54. It was about 3 minutes from just thinking I needed something to eat, to shaking and sweating again. 

I had another sugar drop down to 59, and one Sunday day I had morning blood sugar of 187. I felt bad for about 8 hours before my blood sugar dropped. 

So now my good internist has sat down with me and looked at my table of blood sugars, and figured out how to help me. I was scared that I was just going to go through this with no way to help myself except to eat frequent small meals. The doctor questioned me and realized that I was not giving myself my Octreotide shots on schedule every day.

Sometimes I will get busy doing something at the computer and I don't give myself my injection until 2 or 3 hours after I should have given them. Twice I did not give myself an injection until 4 pm, so I never got a second shot until the next morning about 9 am. 

Therefore, now I make sure to give my Octreotide injection between 11:00 and 11:30 am and pm. Since I have done that I have not had any unusual episodes. My blood sugar may start to drop and when I test it, it is at 75. So I have learned what the symptoms are for when my sugar is at 75, and I will eat then.
I still get a long-acting-repeatable injection of Octreotide at the cancer center every two weeks. I hope this information helps someone who is beginning to have these same 

Update on 12/27/2013: My sugar levels continue to stay level most of the time. One weekend during Christmas shopping season I had a low blood sugar while I was out shopping. Then the next day I had another one at home in spite of being on regular injections every 12 hours. Luckily, I was alright both times because I had some hard candy with me in my purse, and I slowly walked back to where Richard was loading merchandise in our car. God was good and Richard was still there where I could find him.

Tuesday, October 8, 2013

Help from Psalm 91

It's fall now, and I have returned to going to Bible Study Fellowship to study Matthew in the New Testament. We are reading about the early life of Christ, and one assignment was to read Psalm 91. We were to put ourselves in the place of Mary and Joseph when they had to flee from Bethlehem to Egypt and write how this Psalm may have comforted them. 

I could see how having to flee to and from Egypt would put Mary and Joseph in the mind to benefit from "If you make the Most High your dwelling--even the Lord who is my refuge--then no harm will befall you, no disaster will come near your tent. for he will command His angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone."

As I read farther in the chapter, I found verses that helped me, "Because she loves me," says the Lord, "I will rescue her; I will protect her for she acknowledges My name. She will call upon me and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life I will satisfy her and show her My salvation."

I realized how many illnesses I have that God has rescued me from in-a-manner-of-speaking. He has given me a very mild case of Sjogren's Syndrome. Several years ago my internist commented that my symptoms are milder than most patients after 25 years. At one point, the medication Restasis was released to the market just as I was no longer being helped by over-the-counter moisturizing eye drops. I have a dry mouth, but there are OTC medicines for that. I have developed neuropathy in my feet slowly. There are patients who cannot feel their feet very well and have even fallen off step-stools because they did not feel the bottom of their feet. Plaquenil helps to relieve the stiffness in my fingers.

I have been healed by God from fibrimyalgia and the extreme dryness in my left eye that caused stabbing pains. I have required only one incision to remove carcinoid  tumors; some patients have surgery every few years. I could be near death or crippled up due to arthritis, degenerative disk disease or carcinoid cancer. I don't feel very well today, and my blood sugar is shooting up and plunging down, but God has blessed me and I love Him. I love God and He has blessed me. It's a two-way street.

Thursday, August 29, 2013

What Octreotide Does to Hair

My hair is like dryer lint. 

You know, that fuzz that you take out of the lint trap after a load of laundry is finished.  That is how I have thought of my hair for the last year. This week I have a revised comparison: my hair is like dust bunnies. I spotted one-a dust bunny- underneath the wooden bench at the foot of our bed. (We have a tile floor.) That gives a better visual--there is some hair in there, but it is surrounded with fuzz. 

All because of Octreotide. Now you should know that my hair is naturally wavy and coarse. Without calming influences applied as soon as possible after washing, my hair might resemble a bush. However, after shooting up Octreotide since December 2008, it hangs there more limply than a bush would; more like dryer lint. The texture of a single hair is fuzzy. 

I also have less hair than 6 years ago, but I doubt the loss is totally from Octreotide. Part of my hair loss is genetic. I think my Mom had a little receding hairline at the temples, but not much. It is her father who was bald. Is it true you inherit your hair loss from your maternal grandfather? I also lost 3x as much hair as usual in February and March last year due to stress, but it mostly grew back. My generally thin hair, I have decided, is due to Octreotide. (There is some data to back this up.)

Every several days when I wash my hair I have been working on this monologue. (Those of us with falling-out hair wash it less frequently.) How does one make dust bunnies on her head look like hair? I thought I had it figured out until two weeks ago when the curled hair on my head returned to dust bunnies in only 4 hours. That means members of the public got to witness strands that had looked like hair returning to dryer lint. 

Therefore, this Sunday I mounted a full frontal assault. I used one product to spray on wet wavy hair to reduce frizziness. Dry hair was curled with a curling iron. This actually straightens my hair, but it is what makes my hair actually LOOK like hair. I have been informed that it smooths the hair's cuticle. Cream was applied to reduce frizziness and coax out some curl. To me this looks fine, but I know it won't last, so I enveloped my head in a cloud of noxious gas called hair spray. (Don't worry, Diana, I have washed it all out so that I can come see you tomorrow.) 

I am glad to report that at the end of the day my hair still looked like someone had curled it in the morning. It was droopy, but it still looked like hair. Success!

Are ya'll finding that Octreotide has affected your hair?

Saturday, August 24, 2013

Moving slowly in August 2013

For two or three weeks, I have not gotten much done. I made the comparison of how I feel to  having measuring cups full of energy. I need 5 cups full of energy to do the things I normally do, but I have been getting only 2 or 3 cups of energy per day; so I have to choose what to do.

On Monday I went to have lunch with fellow retired teachers that I began working with in 1999. Several of them retired 5 or 6 years ago. We had a wonderful time catching up on recent news. My husband and daughter went with me, and we took our scrapbook of pictures from France. It was a lovely time.

On Thursday I cooked dinner using some chicken and vegetables that were already in the refrigerator. I stir-fried the food and it was delicious. I was very tired with aching legs afterwards. Friday I walked our beagle. On many of these days I also washed 1-3 loads of laundry. It's a quiet life, and I don't get much accomplished. Grrr.

I would like to garden. Our house needs cleaning. I have been trimming our very large day lilies and an iris by cutting away 1/3 of each plant at a time. That takes about 20 minutes. I did some gardening Tuesday and ran out of energy quickly.

That's how things are going. I have decided to ask my oncologist to do an Octreoscan when I have a regular appointment with him September 4th. Today is August 24th, and I have been weak since July 7th, so I think we should check to see if any tumors have gotten larger. It has been at least a year since an Octreoscan was done.

Thank you for your concern. God bless you all.


Friday, July 12, 2013

Good Music! Come Thou Fount of Every Blessing

I was reminded to listen to this great old hymn today when David Crowder posted on Facebook the line " Let Thy Goodness like a Fetter bind my Wandering Heart to Thee".

Mercy Me does an updated version of this old hymn. I enjoy this one so much. Bart Millard and the band do a big ending on the last verse, then quiet down to sweetly sing the very last line. I listened to this cd during my last MRI. It was a wonderful choice.

David Crowder Band does a version more like what my family might have sung in the past. It has more of a bluegrass feel. This video posted the lyrics.

Enjoy the music. Do you have a version of this old hymn that you would recommend ?

Thursday, July 11, 2013

I am not Ready to Make Trips to the Emergency Room, Yet

One thing that (sort of) amuses me is the way our symptoms are referred to as being "flushing and diarrhea". Flushing, like my face just turns pink or red. Why doesn't anyone show a flushed face with sweat running down from the front hairline to the ear? How come they don't show the back of the head with wet hair on the neck? 

When I was suffering from diarrhea this week, I kept waking up at 4:00, 5:00, and 6:00 am bathed in sweat from my head to my waist. How I longed to take a shower, but I didn't want to wake up my husband. He takes care of buying the groceries, cooking meals and cleaning up when I am sick. He has been in pain from gout; so I wanted him to sleep. (I did bathe, but it was later in the day.) I seem to really overheat before dawn when cancer makes me sick.

Early on the third day of being sick, I got my body out of bed and pulled the pillowcase off the sweat-soaked pillow, as a reminder to wash the sheets. I managed to lift the shower chair out of the bathtub, and put it in place. I wasn't strong enough to take a complete shower, but I could sit down and get the water to run over my upper body and wash off the worst smells. So I succeeded in getting washed off before I started my day, but I was horribly weak.
  So, why not go to the Emergency Room and get an IV of electrolytes when I am so weak? I know that was probably what I needed because of the fluid loss from diarrhea and perspiration. 

OK, Update! 7-18-2013: I talked to my gastroenterologist about being dehydrated. He says I should be OK by just drinking water and Gatorade when I feel better. Unless I have very dark urine or no urine, my body should replenish its fluids in the next days after being ill.
So, what causes the weakness? Well, I am somewhat dehydrated, but it's the cancer making me feel weak. I have been having the D-word and feeling ill for nearly 2 weeks. My face is flushed. That's just carcinoid syndrome.

I am not ready to begin making visits to the ER, yet. I guess it's just an attitude. I am not ready to begin that pilgrimage that will go with me for the rest of my life. Other patients write of the strong pain that develops later in the progress of carcinoid cancer. They go in for shots of dilaudin or other painkillers to relieve chest and abdominal pain. Others have heart and lung problems, and, of course, our livers begin to fail. I don't want to go from France to an ER in 21 days. So for now, I am depending on Gatorade and fresh fruit to help adjust my electrolytes. I am getting stronger every day.

Wednesday, July 10, 2013

Tracking Variations in my Health

After posting just last week about our trip to France, I am going through a rough patch in my carcinoid symptoms. From the evening of July 6 through July 9, I had repeated diarrhea. Usually, I am only sick for a day or for the morning, and then I just collapse into bed. When  I get up after sleeping, the diarrhea is often gone. I take Welchol at the first sign of unusual bowel activity, and I keep up with my Octreotide shots.

I just want to track that this does happen. I was sick for 3 days and today I am noticeably weak. I took a loooong time to walk 30 feet  toward my car from the doctor's office today.  I had a regularly scheduled appointment with my oncologist today. 

One change we made was to start a standing order to have my Chromogranin A and Gastrin checked every two weeks. Whenever I get sick suddenly, I can go in and use that standing order to see if I have high levels of either compound in my blood. I would really like just one time to catch my cancer markers in the act of making me suddenly sick.

The last time I went through a period of being sick over several days was in March this year. I wrote about it on March 16, 2013. One thing I want to do is to keep track of the regularity of when I get sick. Here we have a four month time again when I gradually got better, then got worse. I would like to figure out why the tough times come around.

I realize that I have not written much lately about drawing strength from scripture or from music. One verse I have known was in the Bible, but I didn't know the location of was found by me while on the Seine!

Psalm 118:17 I shall not die, but will live, and proclaim what the LORD has done. The LORD has chastened me severely, but He has not given me over to death.

Sunday, July 7, 2013

Doing Well in June 2013


I hope things are well with you! In May and June I have been quite well, and even went on a trip I have been planning for a few years. All three of us were able to go via Air France to Paris and spend 12 days in France! We didn't spent much time in Paris, but saw Reims and Chantilly, and then headed to Normandy. About 8 days were spent in Normandy because it may be the home of my Lesueur ancestors. My ancestor, Joseph Lesueur or Lazzieur, was married in Maryland, in the American colonies in 1702. We are not sure specifically where his family was from as there were many Lesueur's in Normandy, Picardy, and Paris by the time Joseph came along. That story would make another blog.

However, I have wanted to go to France since I was 15 and saw pictures of Versailles. I spent time last year working out where I would want to go, and began praying about when to go. As I was looking up airline schedules and hotel locations, ads for group tours started to pop up on my computer's monitor. After studying several, I realized only one of them would go to the places I wanted to see and stay in one place the length of time I wanted to remain there. So we made the arrangements to go with a tour that would start from Paris and go overland to Chantilly, Reims, and Cabourg. Then we would board a riverboat that would go down the Seine and take us to Paris.

It worked out very well! If you have carcinoid, of course, you wonder, "What will I do on the days I get sick?" I got sick one day while we were at the Grand Hotel in Cabourg and on another day while we were travelling down the Seine. I was sick in the morning and went on the afternoon excursion at 2:00 pm. We never had to change any travel plans.I did miss going to see the famous tapestry at Bayeux, but I began to get better by 9:00 am, and had a lovely walk around Cabourg. I visited gardens, the shopping district, and a local creperie by 1:00 pm.

These photos show the Chateau Chantilly; Reims Cathedral; American Cemetery; Normandy Dancers; Eifel Tower; Notre Dame du Paris, and a garden in Cabourg in Normandy.

Monday, May 13, 2013

I have an Email Address for the Blog part 2


The second part of the eddress is : urney@aol.com

Please don't send ads and unsavory things in the email, or I will remove it. I hope this is a way I can help someone.

God bless you,

I Have Created an Email for This Blog part 1


In the last 6 months I have had more readers asking if I could answer a question for them or commiserate with them that I had before. Therefor, I have made us an email address to keep us in touch.

I will write the first half of the address in this post and will follow with the second half in the next post. The first half is; A5YRjo

The case of the letters does matter.


Thursday, April 18, 2013

We Need an Update! Really Good news!

Well, looking back at last month's post I see I need to let you know I am fine. I had to adjust to being on a lower dose of medication, and then get back to "normal".  So I'm sick in the morning a few days a week, but I do very well during the week after my long-acting shot while the Octreotide is at a high level in my blood.

The good news comes from my meeting with Dr. Imagawa, my surgeon, regarding my MRI. The scan, as usual, didn't show any sign of my tumor. It is not any larger than 3 mm, so it still cannot be seen. I asked the doctor if there is any way to know if I still have just one tumor or if they are like tiny grains of salt across my liver. He said there is no way to know when the tumors remain tiny.

The good news is that the tumor has grown so slowly for the last 4 years that Dr. Imagawa doesn't think it will be the cause of my death! He said I will still be sick, but I won't die from the oncology of carcinoid cancer. He said I will live long enough to die of something else.

This caused me to chuckle because I have spent five years wondering if I have five more years or 10 more years. Now I don't have to think about that, and I'm glad I already have been following the advice of my cardiologist since my recent female ancestors have had heart disease.

I asked him about a case like Dennis Woods who was pretty well the first six years he had carcinoid cancer, but during the next 7 years his liver filled with tumors. His liver is failing and he has brain damage from  the ammonia produced by his liver. The doctor interrupted me and said that I won't do that. That was what I needed to hear!

If my tumor gets large enough to be seen, the good doctor will take it out.

Regarding the phrase saying I will not die of the oncology of carcinoid cancer: he means that I still have carcinoid syndrome. That means my tumors are busy pouring chemicals into my bloodstream: that's why I am sick. The serotonin overload affects the heart, and the leading cause of death of carcinoid patients is actually cardiac insufficiency. That is why I already have a cardiologist watching my heart valves with an echocardiogram

 I feel like I am in good hands. Now I no longer feel like there is a giant pan lid over my head ready to clamp down on my life and confine me until I die. I feel more like a normal person.

Thank you, Father for your grace!


Saturday, March 16, 2013

So,This is How it's Going to Be? Day by Day and with Each Passing Moment


Well, I guess the big experiment was a bust. A couple weeks after having my medication reduced by 6 mg per month, I am all the way back to giving myself two 200mcg shots per day at home. I am also getting a 20mg long-acting, repeatable (LAR) injection at the medical center every two weeks. So I am back to total of 52mg per month.

Unfortunately, I have had a couple of rough weeks. Last week I was ill for a few days, then this week I was pretty well Sunday through Wednesday, but sick for three days so far. Even on days where I don't camp out in the bathroom, I am still weak. I use the support of  my cane and my walker when I need their help. It's becoming more common to be ill. I am developing the philosophy reflected in the title of this post: so this is the way it is going to be.

Disclaimer! See the change that occurred just a week after I wrote this post by reading below! 8/10/13.

God is good. This morning when I woke up He brought to mind an old hymn:"Day by Day and with each Passing Moment." The link above has several great scriptures before the singer begins the song. Just wait, she does sing and the lyrics are posted. It's a lovely hymn from 1865.

You probably Do NOT want to read the section below unless you are a patient with bowel issues.

I must express my appreciation for Welchol one more time. From all the posts on this blog the one about Welchol being effective on diarrhea is the most popular. It is read every day.  So, let me repeat some information about it one more time.

I use the packet of 3.75 grams of the powdered Welchol and mix it with water. It is made of resin beads called colesevelam hydrochloride that attract cholesterol to cling to them. I was having frequent diarrhea a couple years ago and mentioned my problem to my cardiologist. The Holy Spirit must have impressed it on me because it busted into my thoughts twice while I was talking to him. After I told him, the doctor instantly lit up, and told me how this cholesterol-lowering drug also causes constipation.

Welchol is the reason I was able to sleep last night. I took a dose about midnight and slept until 8:50 am. It is effective for me 60-90 minutes after taking it when I have been in the middle of hours of diarrhea. If I have already emptied my gut, Welchol can hold back the next bout for 3-48 hours. Typically, it gives me one night's sleep or rest for a few hours in the middle of the day.

I hope this helps someone.

Post Script on August 10, 2013:
A week or so after writing the paragraphs above, I was doing better.  I had good health from late in March until July 7. For the second time in two years I had particularly good health for 3.5 months: in 2012 it was from about the middle of February through the end of May. I do not know why this happens, but I am certainly grateful for it, Father! This year we went on my "bucket trip" to France, and I only missed a couple of events.

As I was writing the original post in March, I came across this version of "Day by Day and With Each Passing Moment," but I uploaded the other one because the verses with it are encouraging. However, I do prefer this rendition by Russ Taff from his album Faroe Islands.

Thursday, March 7, 2013

The Results of the Experiment!


After one month on less Octreotide, the doctor and I have reached a conclusion. I will gradually resume using two shots per day of Octreotide at home until I can reach a happy balance that removes the dyspepsia and the weakness from too much Octreotide, but avoids the diarrhea and sweaty heat from the tumor!

Now, how will we achieve this perfect balance, you ask? For one month I have been taking just one 200 mcg shot per day about 10 am. I will begin to add in another 200 mcg about 10 pm on Mondays and Thursdays, and then do 3 shots per week. Maybe 4 nighttime shots per week will do the trick.

It is important to note that when my tumor is putting the chemicals into my bloodstream that make me sick, it is probably growing more capillaries, also. Octreotide works by decreasing the capillaries that supply carcinoid tumors. Therefore, when the level of the medicine gets too low in my body, my tumor might be growing.

In general, when I first decreased my shots at home, I felt stronger! I was going up and down the incline at the Grove Theatre where we have church without my cane. I even had my friend Raquel take my arm to walk down the aisle to her seat. Also, my upset stomach  went away after a week. (It was just dyspepsia. My stomach felt unsettled and some days I lost my appetite until after 12 noon.)

However, after 3 weeks of less medication, the cancer symptoms came back. I have had diarrhea on several days and the weakness that continues after it.  Plus, I can't go many places. And I get covered in sweat typically after 9 pm, when the medication in my bloodstream decreases. So the amount of medication needs to go back up, gradually.

Welchol still works for me! Thank God! See my other posts for what it does.

For patients who want to know the number of milligrams of Octreotide we are talking about, here goes: (200 micrograms is 0.2 milligrams)

0.2 mg aqueous shot at home every day
20 mg LAR February 14
0.2mg aqueous shot at home every day
20 mg LAR February 28

That is a total of 46 mg per month. I had been taking 52 mg per month by taking 2 shots at home per day. Now I have to figure out if 48 mg, 49 mg, etc., is the best amount for me.

This is something where prayer can be very effective so that God guides me to select the best amount of medication. Thank you for your prayers!


Abdominal MRI 2013

For the last year I have been seeing my surgeon (Dr. Imagawa) at the University of California Irvine Medical Center every six months. I seem pretty stable, and my scans of all types don't show any tumors, so the doctor has decided to just see me periodically. Just because the scans don't show tumors doesn't mean there are no tumors. I have the microtumors of carcinoid.

When I went to see Dr. I in January, he noticed that I had not had an MRI since 2010, so one was scheduled. I went in on February 27 and had the scan done. I was supported in prayer by friends, and felt peaceful about going in. For the previous scan I had been afraid of claustrophobia causing me to panic during the MRI, so I had prayed, had asked 10 friends to pray, and took my regularly prescribed Effexor and muscle relaxant. That had worked very well, so I did that again. One other detail that really helped--I can see daylight if I look past the top of my head while I am in the MRI tube. It turns out there is open space only 9 inches away from my scalp!

So this time I was calm and the MRI even went faster! I brought in a CD by Mercy Me, and listed to the first two songs while the IV was put in and instructions were given. We were done with the scan before the last two songs were sung! I estimate I was in the tube about 30 minutes while last time it was 45 minutes.

It was good to lie in the MRI and hear "Where can I go from Your spirit? Where can I flee from Your presence? If I make my bed in the depths, If I go up to the heavens, You are there!" Those are lines from Psalm 139 (You are There) by Bart Millard and Kendall Combes from the cd MercyMe The Worship Sessions.

There is a beautiful version of the hymn Come Thou Fount on the same cd. The last verse is so exciting! "O that day when freed from sinning, I shall see thy lovely face! Clothed then in blood washed linen, now I'll sing Thy sovereign grace! Oh, I'll sing my song of grace, I will sing my song of grace! Come Thou Lord, O, do not tarry, Take my ransomed soul away! Come my Lord do not tarry, Take my ransomed soul away! (quietly) Send Thine angels now to carry me to realms of endless day." 

I found out the results of my MRI at a regularly scheduled visit with my oncologist. There is nothing new in the MRI. The same things are still in my liver. Now, I haven't seem the surgeon, Dr. Imagawa, yet. He might decide to do more exploring, and if anything changes, I will let you know.

God bless you!


Monday, February 11, 2013

Hello everyone,

I've not written in a few months because I just can't get the words to flow. My health has changed so that I am not well for as long as I was before. In the past I was able to see improvement in my strength from Feruary to May 2012, but now my strength seems to vary from day-to-day.

In November I had a rough time for 8 days with much diarrhea and dehydration. I don't know what caused the diarrhea to begin. Now I seem to catch more of the viruses that go around than I like even though I had a flu shot. I have not had the flu, but I get upper respiratory viruses monthly.

Beginning in February 2013 my oncologist and I have started an experiment with respect to my medication. I have gotten a 20 mg LAR of Octreotide every 14 days since January 2012. I also began giving myself  a shot of Octreotide 200 mcg per day last spring. Then in the fall I increased the dose at home to 200 mcg twice per day. This helped with the flushing, sweating and diarrhea.

However, I have had more frequent exhaustion. Therefore, the doctor and I have decreased my at home dose to only one 200 mcg per day. This should lead to less fatigue and dyspepsia. (The dyspepsia began about July 2012.) These are two side effects of Octreotide that can be confused with the cancer symptoms.

Having my face flush red is only caused by the cancer. It does not come from Octreotide. So I am tracking my (1) strength (2) dyspepsia (3) flushing (4) feelings of heat and sweating.

After several days, I am having a greater area of my face turn red. The dyspepsia is better, but my strength is good on some days and not others. I will let you know the results of the experiment about March 7.

God Bless,