My blog is an autobiographical account of changes in my life from 2004 to the present. It's rich in principles from the Christian faith. It's charismatic. I am writing about how God is walking with me through my experience with carcinoid cancer. Also, I have had Sjogren's Syndrome, an autoimmune disorder, for over 25 years. Join me on my Journey.
Quote for October
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!
Monday, April 12, 2010
I am the Scourge of Crabgrass, The Defender of the Iris
Crabgrass. Really. This began several years ago when the crabgrass crept through the fence from the yard to the east. At first it was content to stay in the planter, but it has slowly moved into the fescue on the east. A wall went up between the two yards, but the crabgrass remained.
Every year K or I would pull out crabgrass, spray it, or rake it unto some form of submission. The planter with crabgrass is also home to daffodils and jonquils in their season. At one time I had 12 irises there, but the irises lost the battle to the weeds. One huge clump of yellow iris remains, and a tiny rhizome* is making a comeback. I'll have to wait and see what color it is.
Last November I launched an all-out attack on the dreaded weed. Since the narcissus were beginning to come up, I couldn't start with Round-up and kill everything, so I used a weed spray that said it was particularly effective on crabgrass. I used it again the next month. The weeds began to die out from the weedkiller and because it was winter. So I did my first round off pulling weeds out. The planter looked better. I sprayed some isolated areas with Round-up in January and pulled out more dead weeds.
I'm writing of a planter that is 5 feet deep going back to the wall and about 10 feet long. After three months of work, the back 18 inches didn't have anything growing in the dirt, just dried remnants of old crabgrass. Areas of green weeds just remained next to clumps of daffodils and iris because they had been getting food and water there. On February 2nd, I began the first round of pre-emergent crabgrass killer on the planter and the grass. The second round was 6 weeks later, just like the directions say.
So far this has been successful! Last week on my spring break I pulled out the traces of antique weeds from the planter and replaced them with 35 gladiolus corms (bulbs to you). I also added two clumps of pale blue iris. I know iris are blooming now, and are not being planted in California at this time. However, Home Depot was still selling them, and I felt like giving it a try. (We have had lots of rain this year. It rained last night and it should rain one week later.) One of the rhizomes* was large, and I think it will live until next spring and bloom then.
The moral of this is: When I can't fix everything, I can fix some things. The day I put the winter fertilizer with the pre-emergent crabgrass killer on my lawn, I was extremely discouraged about my job. Our school has been in Program Improvement for four years, and the pressure to raise test scores is very strong. Every emphasis is to help students do better on the state tests. And the students don't care nearly as much as the teachers. That really bites. I'll have 8 students in one class who don't want to strain their brains. They want to make the teacher tell them all the answers.
Therefore, it helps to come home and takes steps that I know will work to improve my yard. That's one reason I love to garden; I always see results. I can make some things happen.
Also, one year ago I wrote in this blog about dreaming that my backyard was a bower of flowers. It was a night when I thought God was mocking me by showing me all the things I had not accomplished. When I told Richard about the dream he said we could make my dreams come true. So we have spent a year planting and refining the backyard. It should be very nice for our anniversary party to which you are invited next June 19th.
* rhizome: the root that irises grow from. I think it's technically an underground stem.
Thursday, April 1, 2010
MRI Adventures
I had an abdominal MRI done on Monday evening earlier this week. The oncologist and I decided to do an MRI because a CT scan exposes me to more radiation. An Octreoscan (the specialized test for carcinoid) requires that I stay off my medication for 3.5 days until all the scans are done. That makes my tumors grow, and I develop more symptoms. Also, these tests usually show NOTHING of my cancer. We thought an MRI would show slightly smaller growths than the CT does.
It was all to no avail. The MRI came back negative--no mass was found. I have microcarcinoids--they are about 0.7millimeters wide. The MRI might have shown a growth 0.5 cm wide. My doctor said a CT scan can detect growths about 0.7 cm wide--ten times wider than my tumors. So I'm still the woman with the invisible cancer.
I hate this. Why couldn't I have regular carcinoid cancer? At least the growths would be between 1 and 10 cm, and a doctor could see them. A surgeon could take aim at them with an embolization needle and kill them. Or at least cut off their blood supply. So my tumors remain untreatable except with drugs.
The good part is there doesn't seem to be anything wrong with my pancreas--no visible growths. So the elevated blood sugar that I had in January is probably because of my diet and heredity. Plus not being strong enough to exercise. So I'm not being invaded by a rapidly growing pancreatic neuroendocrine tumor.
I'd just like to be like other cancer patients who can look at a scan and see their cancer. I would like to know if I have two tumors in one small space, or forty tiny tumors sprinkled across my whole liver. It seems easier to understand an enemy you can see.
I do have cancer.
I know because of the symptoms that went away after surgery, and came back two months later.
I can tell every day when I look in the toilet.
I can tell by the symptoms I develop when I don't get my medication.
I can tell by the cancer markers that go up and down.
I can tell by this pain in my chest behind the right ribcage.
I can tell by my fatigue.
I do have cancer, but no one can see it.
I hate this.
It seems as if having the MRI done this week was just to show me that I can do one more thing through Him that strengthens me: I can drive myself to and from a procedure where I was enclosed inside a tube that was only five inches wider than I was for 45 minutes and remain relatively calm. (Is that a run-on sentence?) It is all done through God who strengthens me.
Thank you to everyone who prayed for me or sent emails to me. Thank you to Paul , the technician, who was so calming and played my Cd for me.
While I was in the MRI tube I thought of the verses from 2 Corinthians 12 because I was certainly weak and not knowing if I would be able to stay in the MRI for more than a few minutes. I have gradually gotten over some of my claustrophobia after undergoing 4 or 5 Octreoscans where the plates are only about 4 inches from my face. I hoped that calmness would transfer over to the MRI. It seemed like a perfect opportunity for God's power to be perfected in weakness since I was pretty weak. And God did see me through.
And He has said to me, "My grace is sufficient for you, for My power is perfected in weakness." Most gladly therefore I would rather boast about my weaknesses, that the power of Christ may dwell in me.Therefore I am well content with weaknesses and difficulties for Christ's sake; for when I am weak then I am strong. 2 Corinthians 12: 9-10 The Open Bible, NAS
Love,
Sharon Joy
Friday, March 19, 2010
I Really don't Know How I am, but I'll Find Out
I haven't said much lately because I've been in a waiting mode again. Mostly of the time I've felt OK, even felt good. However, I have to have an MRI to figure out what's up with this pain I've had behind my right ribcage for a few months.
When I had the first two tumors I had a little pain behind ribs on the right side. The tumors were removed three months apart, and I had a distinct little pain with each. Each pain went away after each surgery. The only one who seemed to give it any consideration as a symptom was my internist. He just suggested that we wait and see if it would go away after the surgery, and it did.
The new pain is about 2 inches higher up the rib cage, and it's not always there. It was not there on Tuesday when I went to see my oncologist, but came back that evening when I was doing some work around the house. This time the doctor is seeing the pain as a possible symptom, and has scheduled an MRI for March 29, a Monday, at 5pm.
I don't have to take time off for the scan, but I might anyway. It's in an enclosed MRI at the UCI Med Center; they don't have a closed MRI. I'm claustrophobic. The last MRI I had done was of my back at an open MRI in Corona. That was the quietest MRI I ever had. Half the problem with the procedure is the loud noise making me feel like I am under attack. So I just might take the day off so I can spend time in prayer and do lots of stretches to get ready for lying on my back for an hour.
This month I had my oncologist's visit and my Octreotide LAR on the same day. It worked out expediently because I ordered my shot at the Infusion Center so it could be thawed out in the pharmacy. Then I saw the doctor, and came back to get the shot 45 minutes later. So I was on the 57 Freeway at 3:55. I got home at 5:10, so the timing worked out very well.
I didn't have any labs done, since I just saw the doctor three weeks ago. My blood pressure was 138/81 and 144/78 while I was there. I have been eating much less sugar for 5 weeks now, and that may have helped lower my b.p. I have to have fasting blood work done again for both the cardiologist and oncologist in two weeks, so I will see if my sugar has dropped very far.
My weight is staying between 138 and 140, so I have lost at least four of the pounds that I gained in the last year. I'm quite sure that my triglycerides will be noticeably lower; partly from the diet and partly from a higher dose of statin drug. My doctor will probably credit the drug: he has been determined to find one that would not have bad side effects. I wish I could go back on diet and exercise to lower my cholesterol again, but I don't have the strength.
I can do all things through Christ, who strengthens me.
Love,
Sharon
Saturday, February 27, 2010
Ask a Question, Get an Answer
Last week I was wondering why I was tired when my cancer markers are so low. I think I have an answer. When I had my routine bloodwork done, my fasting blood sugar was 119. For the last few years it has always been 95-99. I don't know why it would make such a big jump in only one month, but I will be eating much less sugar this coming month.
It makes sense now (3/3/10). When I went in to have the fasting bloodwork done(Jan. 27), I was not feeling well. In fact, I had taken two days off. I didn't know what was wrong: I was very tired and didn't feel like I could teach my class. Now I know that I didn't feel well because my blood sugar was too high. At the time I thought maybe my tumors were giving off lots of chemicals. Instead the labs showed just the opposite; all my cancer numbers are great!
For a year I have been weighing 10 pounds more than usual. I guess that has put a strain on my pancreas, or else it was just a matter of time. My younger sister, mother, paternal grandmother, and grandma's brother all had diabetes; so it's on both sides of the family. Also, I bet one of my many medications can raise blood sugar. I have one that can raise blood pressure. Soon I'm going to have more than 10 medications.
At any rate, I praise God that my cancer markers are very low! My Chromogranin A is only 8.8. I must have lacked faith in Him last week when I thought my cancer can't be so suppressed, even though the numbers were. So I give Him glory! He is shrinking my tumors. As Karen D. told me, with cancer you learn not to get too excited at the good news or too down about the bad news. Right now cancer doesn't seem to be the big problem. I have to get my sugar levels down.
Two years ago, having found out about carcinoid cancer and fibromyalgia and having had Sjogren's Syndrome for 23 years, I asked God, "Are you going to give me the world's longest list of obscure diseases, with the world's mildest cases of each?" I was laughing. I would still go with the worlds' mildest case of each, but now I think the list is long enough, Father. Your grace is sufficient for me. I'm st not sure I'm sufficient for all these diseases.
Three times I pleaded with the Lord to take it away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:8-9 NIV
Love,
Sharon Joy
Tuesday, February 23, 2010
My Labs are Fantastic! So why am I so Tired?
I went by Dr. Zell's at UCI Med Center today and got my latest lab results. They are so incredibly good! My Chromogranin A is 8.8 ng/mL. That is totally normal. In fact, the Doctor said it was suppressed. We have been happy because I've been having CgA numbers lately between 20 and 50 ng/mL. This is unbelievable. Praise God!
We have been following the amount of gastrin in my blood because the tumors seem to be gastrinomas. All my other values have been 138, 200 (non-fasting), or 600 (non-fasting). Normal fasting gastrin is 100 pg/mL or below. My fasting gastrin is down to 30 pg/mL. In January we checked the serotonin level in my blood, because too much serotonin in the blood can attack the heart valves. Normal serotonin is 26-165 ng/mL. Mine was below 10 ng/mL; too low for the reportable range. So I guess my heart is safe from attack by serotonin.
Today the doctor and I seemed to be on the same wavelength. I was telling him about the symptoms I've been having: diarrhea the day before my treatment; a feeling of fullness in the upper right quadrant of my abdomen; and a dull pain in the same quadrant. He said he had been wanting to get some images, since we have not done any nuclear medicine scans since August 2009, and he suggested doing a MRI. Unlike the nuclear medicine scans, an MRI does not require me to go off my medicine and it exposes me to less radiation than a CT scan. He had obviously been thinking about doing the MRI before I got there. He said we can use it as a baseline scan if nothing shows up regarding the symptoms I'm having. That sounds fine to me!
My next appointment is in three weeks. Dr. Zell said it takes about one week to get the approval from insurance, one week to schedule the MRI and one week to get the results. So I have my next doctor appointment and my LAR on March 16. I can race over to the Medical Center as soon as 5th period ends and get there on time.
So why am I so tired? I don't know. All I can think of is stress from my job. We have our district assessment on March 5 and there's lots of pressure to help the students learn to read and write better for the CST (state testing) at the end of April. I was surprised how much more relaxed I was after the district assessment was over last fall. I was much less stressed. I bet my blood pressure went down that week.
Romans 5:1-5
Therefore, since we have been justified through faith we have peace with God through our Lord Jesus Christ through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only this, but we also rejoice in our sufferings, because we know that suffering produces perseverance ; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our heartsby the Holy Spirit, whom He has given us.
Saturday, February 20, 2010
Finding Encouragement on the Internet
I'm getting through the month of February OK. I went in for my cancer treatment on Wednesday: 30 mg of Octreotide shot into the hip. It was discouraging because I got sick from cancer on Tuesday night. Carcinoid has its own peculiar type of diarrhea. It's a sign that my medication isn't as effective as it was , if I'm getting sick on the 27th day after my last shot. I was sick and in pain for a few hours, but I slept alright.
What helped with my pain was reading an email I got from my Aunt Dottie regarding work in Haiti. I felt drawn to the Internet to find some comfort for myself with my gut hurting--I was looking for another carcinoid patient to connect with, but I checked my email first. Aunt Dottie had forwarded an email sent from Haiti by a volunteer with Radio Lumiere. (Radio Lumiere is a Christian radio station that my Uncle Jim (her husband) worked for in the late 1960's.) The President of Haiti had declared 3 days of prayer and fasting on the one month anniversary of the earthquake! I never read anything about that in the newspaper. I haven't had a chance to watch the news for a week. How wonderful! Everywhere people were gathering in open-air churches to pray and worship! The Americans couldn't understand how wonderful this is in a country where voodoo competes with Christianity. They wanted to go about business as usual.
I prayed that Haiti for Christ would emerge from the ashes. The Christians in Haiti have a strong faith. Praise God!
After that great news, I went to the website for Carcinoid Cancer Foundation. The link is on this blog. I found there was a page listing blogs and websites written by carcinoid patients, and I picked one to read. It's written by a Christian! I was so excited! Actually, it's written by his adult son, but when the man is well enough he write encouraging messages. The blog is DGWhealthnews.blogspot.com. DGW is a former pastor who retired just a couple years ago. He is ill from carcinoid cancer.
That was a blessing. So I felt much better from finding good news on the 'Net.
Sharon
Sunday, February 7, 2010
Even though it's Pouring Down, I can see You through the Clouds
This is a story about a beautiful song and how it helped me through my week.
The number of different things each teacher is being asked to do is steadily increasing month-by-month, and I have gotten discouraged that I can do all of them. Maybe I don't have faith that we can really pull this off. At least, that we can't do it all in one year. I have the feeling that I'm pedalling as fast as I can, but more keeps being added. I have decided to only work 50 hours per week, because any more leads to exhaustion and discouragement.
On Wednesday I felt that way. It's the day I have my drum lesson, and before I left, I snatched up Cd's by Sade, Carlos Santana, and Francesca Battistelli. I play hand percussion, and was looking for new music to play along with. Sade is an old favorite of mine to accompany. When I got to the studio, I handed Butch the Cd by Francesca because I had been listening to it on the way to my lesson.
This is where the beautiful song comes in. It's called "Beautiful" and was written by Francesca Battistelli, Ian Eskelin, and Andrew Fromm. I sang along and played to this for 10 minutes, then went home singing all the way.
" Don't know how it is You looked at me
And saw the person that I could be
Awakening my heart
Breaking through the dark
Suddenly Your grace.......
Chorus: Like sunlight burning at midnight
Making my life something so
Beautiful, beautiful
Mercy reaching to save me
All that I need
You are so
Beautiful, beautiful.
Now there's a joy inside I can't contain,
But even perfect days can end in rain,
And tho' it's pouring down,
I see You through the clouds
Shining on my face
Chorus: Like sunlight burning at midnight,
Making my life something so
Beautiful, beautiful,
Mercy reaching to save me
All that I need,
You are so beautiful, beautiful.
I have come undone, But I have just begun changing by Your grace..."
I had more discouragement Thursday and Friday from a student and his mother. He has been not working and has an F. His mom wanted me to email her all the time to tell her what he is doing. I have to write her every assignment that Hosea doesn't do. I won't do that. My policy is that the parent has to email me every week to check on their child. Also, the child has to write down his assignment, and I will sign it. That way the parent can see what needs to be done.
I will not do the work of the parent and the child.
So I went to work singing "Beautiful", and everything turned out alright. I still have to get the parent and child to follow my policies, but I was not so discouraged.
Saturday, January 23, 2010
You Capture Me, O, Lord, You Capture Me!
I had asked Christ to be my Savior as a child and grew in knowledge about the Lord as I kept attending church. Later I rededicated myself to the Lord several times as a teenager and young adult. Lately I have been wondering why I never made this commitment to be close to God earlier. Just today I figured it out--with God's help in my worship time.
There has been a change in the sermons preached from the pulpit over the last fifteen years. Perhaps it began earlier. I was looking at my sermon notes from the past, and I can see in the notes from New Hope Church that there has been a definite emphasis on individual Christians having a close relationship with God for several years. Relationships are what has been emphasized. Our relationships with each other as Christians; relationship with the community around us, and others. Most supremely, our relationship with God.
The only name I can give what for happened to me is totally surrendering my life to God. I can remember learning about this as a young woman about to leave college. The youth pastor at my church spoke to a small group of us about giving up our plans and surrendering to what God wanted us to do. I could not do it then: I was afraid. I was uncertain about who I was, and I wasn't sure I could do what God wanted me to do. I feared I would fail in my weakness. I also didn't want to go far away to some uncomfortable place. How sad that I didn't know that God would be beside me and He would develop the strength in me that I needed.
It's also sad that there was no one around I could talk to about this. The youth pastor was about to return home to Texas because his wife was very ill with an as-yet-undiagnosed illness. And I was on my way home to stay with my parents for the summer. When I came back I was in grad school and attending the Singles Sunday School class.
A huge factor in turning my life over to God was alternative Christian music. "I Want a Faith Like That" by Jonah 33 scared me to death, but fascinated me at the same time. I wanted a faith like that, but I wasn't ready for it yet. I knew better than to pray that song as I sang it.
Many other songs that we sang on Sunday by Matt Redmon or Chris Tomlin or Robert Ruiz and others promoted an intimate relationship with God. When I went to New Hope it was my first exposure to contemporary Christian music. LOL: I wondered where I could find these songs, and my then 11-year-old daughter told me to listen to Air1 radio. All the kids knew that; I just had to catch up.
Also, I have to credit the books I read. On the front page of this blog you see books listed by Larry Crabb (The Pressure's Off). He was the first influence leading me to understand that God really does have a plan for us, and it's not the one we wanted. But it will be the best plan to grow us into the person He wants us to be. Larry teaches us that God doesn't guarantee us that only good things will happen to us because we do "the right things". Life isn't like an equation, where if you do A plus B, you get C. God's ways are not our ways. Another helpful writer is John Piper.
This month I found a way to express how my life has changed in Jeremy Camp's song Capture Me.
"You took this life that once was frail
and gave it strength where hopelessness won't prevail,
and life more abundantly!"
"You opened up my heart and made a home in me.
You lifted up the weight the world has placed on me.
You capture me, O Lord, You capture me! "
"Your beauty, Lord, I know it captures me.
Your sweet embrace it brings me to my knees.
You capture me, O Lord, You capture me!"
Glory!
Mary Sitting at the Feet of Jesus
Now as they travelled along, He entered a certain village; and a woman named Martha welcomed Him into her home.
And she had a sister named Mary, who moreover was listening to the Lord's word, seated at His feet.
But Martha was distracted with all her preparations; and she came up to Him and said, "Lord, do you not care that my sister has left me to do all the serving alone? Then tell her to help me."
But the Lord answered and said to her, "Martha, Martha, you are worried and bothered about so many things;
but only a few things are necessary, really only one, for Mary has chosen the good part, which shall not be taken away from her."
I can remember the first time I heard this story in Sunday School. The teacher had a picture of Mary sitting at Jesus' feet listening to Him. I identified with Mary. I wanted to sit by Jesus, too, and listen to Him.
When the teacher told us that Mary's big sister came in and asked Him to tell Mary to go help in the kitchen, I was wary. I expected the big sister would get her way, and Mary wouldn't get to sit my Jesus anymore. I was sad for Mary.
But then the teacher said Mary didn't have to go and help. She could keep sitting by Jesus! Jesus said sitting by Him was a good thing to do! I was happy. Mary got to keep listening to Jesus; then I could sit by Jesus and listen to Him, too.
I still get tears in my eyes thinking about that. I think it was liberating. Sometimes little sisters got to have their way. Women didn't always have to go work in the kitchen. They weren't second class citizens. Jesus invited everyone to listen.