Update 7/1/09

Happy Canada Day! K and I got back from Montreal yesterday after having a great time!

The hotel was in the perfect location for us because we were on the edge of Old Montreal to the south and Chinatown to the north. The metro was across the street. Chinatown was having a open air market for several days--when it didn't rain. We picked up a $4 umbrella there and a $2 sun hat. (The weather varied.) Best of all, I got a Chinese stamp made with my name in Chinese characters. I got the red ink, so now I can stamp my great works with my name. I don't think I ever would have come across that item for sale anywhere else.

The gentleman who made the stamp had a Chinese shop on the corner of the pedestrian street. He has books, calligraphy materials, art supplies, and various thing re: Chinese culture. The top of my stamp had to have a raccoon on it because of the month and year I was born. The shop owner carved my name in 30 minutes while K and I went to eat dinner. It was an interesting conversation because he spoke Cantonese and French. He understood some English. I spoke English and K spoke some French, so together we figured it all out.

We took pictures and walked all over Old Montreal. We went to two museums. Of course, we tried various restaurants. One we really liked was Chez Suzette. They had crepes, fondue, and spaghetti like the spaghetti in Romania. K especially liked the spaghetti.

We had a very nice time. I had my wallet stolen on the first day we were there. Luckily, I had just taken my debit card out of the wallet for safe-keeping that morning. I wish I had also removed my checks and military ID. The ID had Social Security numbers on it for R and I, plus his birth date. We are both at risk for identity theft now. However, the thief never had used the credit card or any checks by time I changed the accounts. Maybe he/she just wanted the cash. Pray that we stay safe from any fraud.

It was interesting how I reacted to the theft. I discovered it at a restaurant where we ate lunch. I stayed calm and walked back to the hotel to get cash--there was only $35 in my wallet. I keep my money in a few different places when I travel. When I returned to the restaurant, the server expressed concern over the loss of my wallet. I thanked him and said so many different things had happened to me in the last couple years, that this wasn't such a big deal. Five years ago I would have been much more upset.

I need to replace my health insurance cards, driver's license and military ID. I have signed up for any identity theft program. Richard already had one.

We still had a wonderful time. I acquired a small French vocabulary. It's easy to read French signs because the vocabulary is similar to Spanish, and, as K pointed out, everything is in the present tense. We picked up a few Christmas ornaments a the Christmas shop, and we had a very flattering cariacature done by an artist in one of the city squares. I brought home a T-shirt for each of us and many pleasant memories. I would go back again.

Catching up

Hi,

A.) R, K and I went to the Mission Inn last night (6-19-09) to collect on the dinner for two that I had won. (From Singh Chevrolet in Riverside. If you ever need a Chevy, buy one from them. They are the Perfect Attendance program in our school district. Without their generosity, there are no prizes for the students.) We had a great time. The limo came to our house at 5:30, so we were early for our 6:20 reservation. The table was all ready for us, so we went right in. We like to eat a little early to avoid the big crowds. It was delicious food with excellent service.

R and I shared the Chateaubriand and K had fillet minion. The adults got to enjoy some wine with dinner and relax. It's good that K gets some experience like this so she is prepared for dining in a fine establishment when she is older. We have taken her to the Sycamore Inn in Rancho Cucamonga, and just about every else we have ever dined. She started going into fine restaurants when she was about six years old. I still have the dress she wore.

B. I was in Houston, Texas last weekend for the Love Family Genealogy Conference. I was still working on Thursday, but arrived on Friday and met some lovely, friendly people. We had a great dinner at Pappadeaux. I had a crab cake with shrimp (rather than the crawfish).

What did I learn about our branch of the Love family. (a) we are either descended from some branch of the Love family which descended from 5 Love brothers who lived in Chester County, PA in the early 1700s. Then they spread in 3 directions. They are all over the place.
or (b) We descend from an independent line of Loves who came from Ireland soon before the Revolution and were clearing their land when the Rev. War broke out. There is a Henry Love who received a pension for being crippled in the war. His story sounds much like the family story we have. However, Henry's son remembers his father's brother as being named John. We are supposedly looking for a Robert, but we are not sure about that.

So the Chester County Loves have proximity on their side, but the Henry Love family has a similar story. I have to keep looking under rocks to find the missing link.

C. I have discovered that much of my muscle weakness when I'm working out at Curves is not from cancer! It may be from taking Zocor for the last several months. Statin drugs cause muscle weakness. Paula (at Curves) and I would grieve at my loss of strength, thinking it was cancer taking its toll. Instead it could be medication.
Pray for me as I need to start eating right and exercising again. My cholesterol was up to 200 even on Zocor because I couldn't exercise and I'm eating badly again. Thanks!

D. Tuesday I go to Montreal with Katie. It's her reward for getting A's in French for 3 years. We leave Tuesday at 7:50 am. Return next Tuesday morning at the same time from Montreal. I'm learning to use my digital camera. I will see if I can upload some pictures to this blog. I am on Facebook now and I have gotten a few pictures on there.

Have a Great Week!
Love,
Sharon

God Gives me Presents

It started last February. God began giving me presents to encourage me and let me know that He has not forgotten me.

On February 14th I took Kay and R to the fundraiser for Garden of Angels/Safe Surrender. (There is a link to their website on my first page.) Garden of Angels is a cemetery in Southern California for babies that have been abandoned by their mothers and are found dead. The Safe Surrender law in California is supposed to keep this from happening, but evidently, the people in need of safe surrender do not all know about the law. So I took my family to the fundraiser on Valentine's Day. It's about love and totally fitting that it is near Valentine's Day every year. This is the first year I have gone to the fundraiser.

At the dinner there was a silent auction and a raffle for various items that have been donated. I bought 5 raffle tickets and put 4 of them in a drawing for a beautiful pearl necklace. I prayed, "Lord, I'm 56 years old and I've never had a pearl necklace. I've only got about 5 years left on this earth, and I think it would be totally appropriate if I won this necklace." I left it at that. I enjoyed my dinner and bid in the silent auction. There were many nice things to bid on. In fact, I had such a nice time, I want to reserve a table next year, and take friends who would be interested in supporting Garden of Angels/Safe Surrender.


When the winner of the pearl necklace was announced, I had my 4 tickets spread out in front of me. Kay was watching and when the winning number was announced, she said,"Mom, you won!"
I wasn't really surprised. When the MC asked me what I thought of winning, I said, "Amazing!" I really meant, "God is amazing!"

One day this spring I had a difficult time when I realized I'm not going to be around to see my grandchildren do things. I don't know if I will even get to see them. Kim, a secretary at work who also has cancer, was comforting me. She reminded me of simple things like birds singing are God's gift to us. So I've been extra aware of birds singing lately.

Sometimes, when I feed Spunky in the morning, I sit out on the patio for a few minutes with a cup of tea. The birds in my neighborhood sing and sing. The other day I realized I was hearing three different bird songs at once. Then another bird began chattering to the west, and the turtledoves returned on the house to my south, so I could hear their cooing. It's as if I live in an aviary. God is good.

Another gift from God is the healing of my marriage. I'm sure not doing it. R and I have not lived together for almost three years. He has been coming over on weekends and doing yardwork. We have found a place where we can go to church together where people don't know our history. We can worship and socialize like a couple that has been married nearly 24 years. One evening while we were eating hamburgers, Richard asked a couple men about the rings their wives were wearing. Both men had bought their wives new rings after they had been married some years. One man referred to his wife's "starter set" and said he had replaced it long ago.

Soooo, I now have a new ring! It has a large center stone with two smaller diamonds on the side. I just got it Friday night, and only a few people have seen it. So you are among the first to know!

But that's not all! God gave me presents on Thursday, Friday and Saturday! Thursday there was an assembly sponsored by Singh Chevrolet for our students with perfect attendance. Singh also gave a prize to a teacher of dinner at the Mission Inn and a ride there in a limousine. And I won! I was really surprised by that one. I was thinking about some teachers with good attendance, when Dave announced that I had won.

Saturday Kay and R and I went to a fundraiser for Foothill Family Shelter. This is a wonderful group in Upland that helps families have a place to live, gives them job skills, and teaches them how to save money while they are in the two year program. The Shelter has a 120 day program and a longer program. It was so inspiring listening to the families talk about all the help they had been given! The Shelter also helps them with therapy, job skills, parenting skills, and dental care. One of the dads said he had a new smile, and thanked the Shelter for giving an ex-convict the tools to go out and get a job. One son wanted to especially thank his therapist. The younger son said he was learning how to express his emotions in group therapy. A mother learned how to take care of her children and plan for a future together. Another dad had saved $10,000--the most money anyone who passed through the Shelter had ever saved!

I was so excited by the work at the shelter that I wanted to make a donation. One of the volunteers suggested that I buy raffle tickets for the jewelry that was being raffled off. I donated enough money for 8 raffle tickets. When the MC began reading the numbers of the winning tickets, I handed some to a lady at our table so she could play along. I didn't think I needed to win anything else this week. Kay asked if she could have some and just took one.

When the MC read the number for an amethyst cluster ring, Kay won! She was very excited. I told her God wanted her to have a present.

Isn't God amazing?

Update 5/30/09

Hi,

I have not written for a week. Last Saturday and Sunday I was going through such a difficult time that I couldn't write about it. A few days later, I could look back and see what had happened, but I didn't have time to write about it. So, one week later, I will try to reconstruct what was happening.

I had previously written that my Chromogranin A had only gone up to 93 in May. The April reading was 87, March was 76, February was 57 and January was 63. December had been 254 before I started taking medication. Those are small increases, but there is just one problem--my numbers aren't supposed to be going up at all.

My oncologist, Dr. Z, is following the protocol of a study being done at Philipps University in Marburg, Germany. The title is PROMID: Octreotide LAR delayed progression in neuroendocrine midgut tumors. This study found that the median time before the tumor progressed after starting Octreotide LAR @ 30 mg per month was 14.3 months. The patients on the placebo had their tumors delay progression for a median of 6 months. My doctor said the reason the disease went 6 months without progressing is because the tumors grow so slowly.
The problem? My tumor delayed progressing for only two months: January and February.

When I saw Dr. Z on May 12th, he said that unfortunately, it looked from my symptoms like my numbers were continuing to go up. He told me that if Octreotide stopped working for me, there was a study being carried on at City of Hope that I could qualify for.

So last weekend I was facing the following fears:

1. If my tumors keep growing like this, I'll be ill soon after school starts in August. I will miss work if the surgeon does a chemoembolization of my liver.

2. That's if they can find my tumor. It showed up in November, but wasn't visible in March. It has to be about 1 cm, so Dr. DI can see it well enough to stick a needle in it.

3. While I was on the LAR (long-acting injection) my numbers went up much more slowly than when I gave the injections to myself. I had to start giving myself shots again on May 26th to get ready for a scan to be done in July. (I can't have the long-acting drug in my body when the scan is done.) When I give myself the shots, the timing of the injections isn't exactly 8 hours apart, so the medication doesn't stay level in my bloodstream.

4. So every time I stop the LAR because of a scan, my cancer will grow more quickly.

5. How long until I am so sick I can't work?

6. If I get into a clinical study, what if I get put on the placebo? Would the researchers really just let someone die on the placebo, rather than switch her to the drug being tested?

These are the crazy kinds of thoughts that I have. I wanted you to know what it is really like to be me and have cancer. Everything is not OK all the time. God just helps me get through it.

Sunday morning I got down on my knees and prayed. I know that God always hears me. I know that because of His greatness--He says that He hears us and He does. I just don't always feel like I'm getting any response. So I got up and went on getting ready for church.

As I was getting ready, God told me to praise Him. I acknowledged that when I first became ill, all I could do was praise Him. I had no idea what the doctors could do. So I praised Him in song that morning.

Then He sent me a picture of myself kneeling at the altar in church and making myself very small. I had brought the graph of my Chromogranin A values. I laid it down at the altar and knelt. I had pictured this image of myself kneeling once before, but i thought i was just being overly dramatic about bringing in the graph. I guess God really wanted me to bring it in. So I did what He told me to do.

That lifted my spirits so I wasn't as frightened. That's how God helps me.

Update 5/15/09

Hi,

Tomorrow is the Relay for Life at Rancho Cucamonga High School. Kay and I will be there. I'll do the first 1-2 laps and go home. Kay does charity events because she is in Key Club at Colony High School. She is their historian, so she goes to take pictures. Tomorrow she will be there for 12 hours to take turns in the relay. She raised $100 for the American Cancer Society.

I had the best Mother's Day ever. We went to church and then to brunch, and we even had a reservation for brunch! Then I sat out in the garden and deadheaded flowers while Kay and R trimmed and planted a few things. They went over to see Grandma H afterwards, but I was too tired to go. I had to be able to go to work in the morning.

I am not doing very well. For the last three weeks I have added problems with fatigue on the weekends and have gone to sleep for three hours on a Saturday afternoon, or just sat out in the garden, instead of planting anything new out there. Of course, I'm tired during the week, so I don't cook for Katie and myself. Tonight I slept from 5:00 until 8:24. It's a good thing Spunky barked, or he would have been outside alone even longer.

This is where you can help. I have plenty of money for food, but I just can't cook it. This week I heated up some spaghetti sauce for Kay on one night, and she was able to eat that for two days. Otherwise, I buy Chinese, or she eats frozen food. Her Dad buys her fast food after school many days of the week. I'm not getting enough protein, and that may make me feel weaker. Sometimes I eat plain sliced ham or turkey, so I get protein. It's easier for me to come home and just eat fruit, cookies, or a peanut butter sandwich. I can't put a meal together.

I do my grocery shopping on Sunday or Monday. I try not to buy many things that will spoil, but I throw away too much food. I'll buy a package of Express Salad and sometimes use half before it goes bad. Tonight I cooked some strips of steak that I was going to use to make stir fry, but I never got that done. I hope the meat hasn't gone bad. I just pan fried it with some olive oil and soy sauce, so maybe I can use it tomorrow. I only thaw out one frozen meat per week because I only cook one or two times weekly.

I have plenty of money for food, and I can even buy the groceries, but I need someone who can cook for Kay and I. I would be happy to pay $20 for a prepared meal. It doesn't matter which day of the week it is, we can use it. R would help us, but he doesn't live with us, and he teaches and has office hours from 5-9 Monday through Thursday. Please let me know if you can help me. I've appreciated it when people cooked before, and the food was delicious!

I saw my oncologist on Tuesday for our monthly appointment. The chromogranin A test did not get done, so I had blood drawn for that test again. There are some fasting tests the doctor would like to have done to see what else my tumor might be producing. He said neuroendocrine tumors (carcinoids) can also give off insulin, gastrin, glucagon, and VIP, so he is checking to see if my tumor is producing those compounds.

For the record, my symptoms include my usual carcinoid digestion, feeling heated, high blood pressure, nausea, poor balance, and mounting fatigue. My chromogranin A level was at 87 last month. It feel like I have passed 100 now. My last tumor (June 2008) was removed when the numbers were at 170. I felt really well in the middle of the day today. I just get very tired.

God bless you all and Good Night!
Sharon

Update 4/4/09

I am feeling well these days. I got the Octreotide LAR (30mg) on Tuesday, March 31. The next morning I was able to get up a few minutes after my alarm went off at 5:55, instead of lying in bed until 6:10 or 6:24. So the medication helps me to not feel so exhausted. I should be able to stay on the LAR for a few months before I need to go off of it again for more testing.

Today I visited with Em, my younger sister. We talked about how God reveals himself to us. She, also, picks up a book and finds God has lead her to exactly what she needed to read that day. She told me our mother heard from God, and He would reveal things to her about her life or about our children. Em also has seen visions, so that is three generations in my family that God speaks to in a special way. I'm glad I brought up the subject of visions or I never would have had that conversation. Maybe I'll hear from some other relatives now, because bringing up what God told you last week doesn't come up in every conversation.

Em could talk with our Mom in a way that I couldn't. My older sister and I left at the same time to go live in the dorms at California Baptist College in the 1970s. Em was still at home for several years and she and Mom would talk. Over the years, Mom confided some of the things that God showed her.

Em and I talked about our children in heaven that are up there with Mom and our grandparents.
One day I'll write out the vision I had of my baby being received into Heaven in God's nursery. I saw a nursery lady with my baby in her arms, and when she turned around, there was my grandmother, grandfather, cousin Jimmy, and my great grandmother followed by others, coming down a few steps into the nursery. They were all there to see Sharon's baby. My grandmother sat down in a rocking chair and held the baby in her arms. My family gathered around to see my baby and they were taking her home to live with them. Em and I think there may be more grandchildren in Heaven than there are here on earth. My mother should be busy.

One thing I have more sympathy for is arthritis pain. My mother suffered pain for years. Now I've started to be in pain in my right hand and wrist and in my shoulder. Today I moved a leaf rake 3 strokes and my wrist began to hurt. It still hurts, so that is all for today!

Update 3/21/09 The Big One

Hi,

Thank you for your prayers. I know they got me through Tuesday, Wednesday and Thursday this week. I might not have gone to work without them. On Friday, some friends told me I looked much better than on Wednesday. So, thank you.

I saw my oncologist on Tuesday. The medical treatment with Octreotide is working well. The tumor in the liver shrank, and my tumor marker (Chromogranin A) is down to 57. A count of
0-50 is normal. So my numbers are almost normal.

The bad news is that the doctor was very blunt about making sure I understood that I will not recover from carcinoid cancer. He said even if the tumor in the liver was able to be removed, the tumors are being spread through my bloodstream, implying that the tumors can't be stopped. In the meantime, I should continue to be in good health for the next two years. The progress of the disease should slow down for a couple years, so that I can continue working.

Outside of asking God for healing, I always ask God for the least invasive procedure, with the best possible results. I have continued to ask God that I will be able to work, so I can have my income and my health insurance, and so that I'm not stuck at home. I like using my talents and training, plus 7th graders can be very funny. So, in one way, this is an answer to prayer.

I was devastated on Tuesday and Wednesday. Pat and Sandy at work wanted to talk with me, but I told them, "If I start to talk about it, I'm going to cry."

I got help on Wednesday evening when I talked to my friend Gerry. Gerry had thyroid cancer and had her thyroid removed in April 2008; so we went through cancer surgery together. We are in a prayer group on Wednesday nights. She is going through higher counts of her cancer marker, so we are both in need right now. What a cancer patient most needs is another cancer patient to talk to; so I felt much better after talking to her. We comfort each other.

The irony is that Gerry and I both have the gift of healing, and we have been healed from other diseases. So now the healers need healing. Its good to talk because we are both mature Christian women, and she understands where I am in my walk with Christ. So it's not like Job talking to his friends. Gerry understands where I am.

I saw the surgeon on Thursday. He doesn't put thing quite so badly. He has a PAC (physician's assistant cancer) who remembers me and the symptoms I've had in the past, so it's nice to talk to her. On the record for other patients; I have poor balance, fatigue and hot flashes even on the Octreotide. I always have this odd change in my digestion that is the first symptom I get from carcinoid tumors. However, I'm still working, and in January I was passing several days per week where I felt like I didn't even have cancer. That was after a two week vacation and Octreotide shots.

The surgeon (Dr. DI) told me that when we can see the tumor, he will take it out. He also said that in the next two years the technology may improve, so that doctors can discern the microcarcinoids that I get and remove them sooner. He said, "You get those tumors that only need to be a few cells, and they make you sick! That last one we removed was the size of a pinhead." So Dr. DI didn't make any false promises, but he left me some hope.

And Then God 2008

This is finished! 10:10 pm, March 23, 2009

Removal of the First Tumor

After the tumor could not be removed in February 2008, the surgery was postponed until March 27, 2008. I was badly disappointed. The Monday morning that my internist, Dr. B, called me to say my pre-op chest x-ray showed pneumonitis, was the same morning that I got the call from UCI to schedule my surgery. I had to tell the UCI nurse that I had pneumonitis. That pushed out the removal of the tumor two weeks farther into the future. I just wanted to get that tumor out of there before it could do any more harm.

Unfortunately, the tumor spent March metastasizing. I was amazed. The doctor was amazed. Dr. L removed the tumor endoscopically with me under general anesthesia. He is a surgeon in the Chronic Digestive Disease Center at UCI Medical Center; he’s not an oncologist or a cancer surgeon. I remember the phone call Dr. L made to tell me the results of the operation.

Dr. L said the tissue he had removed was 0.7 cm and the tumor inside of it was only 0.7 mm. That makes the whole tumor about as big a crystal of salt or sugar. I remember the doctor sounding amazed as he told me the tiny tumor was metastasizing. I think it’s one of the smallest tumors to ever be caught in the act of sending cells down a lymph vessel. I think his expression was, “I don’t know what to make of this!” He wanted me to get a second opinion from another surgeon, and, as we were speaking on the phone, decided I should see an oncologist, also.

Becoming a Cancer Patient

So I became a patient at the Chao Family Cancer Center at UCI Medical Center. I didn’t know that was where I was going as I parked my car in April 2008; I thought I was just looking for a surgeon’s office in building 22. When I saw the name on the building, it became official; I was a cancer patient. Oddly enough, no one had used that word to speak to me. They all said “tumor” or “carcinoid”, but I had to admit that if a tumor is metastasizing, it must be cancerous.

I had my Bible with me that day I went to see the surgeon. As I was waiting, I read from Philippians chapter one. When I got to verse 19, I knew that God had sent me to a special passage.

“For I know that this shall turn out for my deliverance through your prayers and the provisions of the Spirit of Jesus Christ, according to my earnest expectation and hope, that I shall not be put to shame in anything, that with all boldness, Christ shall even now, as always, be exalted in my body, whether by life or by death. For to me, to live is Christ, and to die is gain. But if I am to live on in the flesh this will mean fruitful labor for me; and I do not know which to choose. But I am hard-pressed from both directions, having both the desire to depart, and be with Christ, for that is very much better; yet to remain on in the flesh is very much better for your sake. And convinced of this, I know that I shall remain, and continue with you all for your progress and joy in the faith, so that your proud confidence in me will abound in Christ Jesus through my coming to you again.” Philippians 1:19-26

I finally had found someone who understood how I felt! It was the apostle Paul so many years ago. Especially verse 23 when he says he is hard-pressed from both directions. No one I speak to ever understands that. If I spoke with more people over 80 years old, I think they would understand. As we age, we get to the point that so many of the people we have loved have gone to heaven, that heaven becomes a welcoming place. By that age, maybe we are less obsessed by this world, and ready to rest in our Savior’s arms. Plus, I was very excited that day because Jesus had planned for me to read a special passage when I was scared.

In theology when someone reads a passage that applies directly to them, even though the circumstances may not be exactly the same as in the Bible, it is called a rhema. A rhema is an insight into a passage or application of a passage to someone’s life. When you think, “That sounds just like what I’m going through”, that’s a rhema.

So I met my surgeon, Dr. DI, in April 2008. He was very direct when he spoke with me, but clear and friendly. As he told me my situation, he echoed some of the things I had read about carcinoid tumors. Dr. DI explained the typical situation:
 If a patient comes in with a 1 centimeter tumor, the tumor is not functioning or metastasizing. (It has usually been found incidentally to some other problem.)
 If a patient comes in with a 2 centimeter tumor, the tumor may be functioning and metastasizing.
 When a patient has a 3 centimeter or larger tumor, then it’s more likely that the tumor is functioning and metastasizing.

[Functioning: in carcinoid tumors, it means the tumor is giving off the hormones and neurotransmitters that make the patient sick. The chemicals given off are things like vasodilators or vasoconstrictors, serotonin, prostaglandins, histamines, chromogranin A and more!]

The doctor said, “Your tumor is only 0.7 millimeters and it is acting like a 2 or 3 centimeter—no, a 3 centimeter tumor. This is going to be a case report.”

What Dr. DI said matched what I had read. I had searched literature on the Internet. Recently, there had been an increase in information on microcarcinoids. However, there have not been many studies done on those tumors to indicate what the prognosis was.

[Case report: Researchers report on an individual rather than a large study of 200 patients, for example. The information about the individual is considered significant to advancing the knowledge about her condition.]

In April 2008 my doctors began tracking the amount of Chromogranin A (CgA) in my bloodstream. That is the definitive marker for carcinoid cancer. Other chemicals are given off by the tumors, but this one gives the best info to help you see if the tumor is growing. The normal range for CgA is 0-50. Mine was 132: more evidence that a tumor was growing. It backed up my symptoms.

My oncologist and my surgeon do not necessarily see my cancer from the same perspective. The oncologist had never dealt with a case that was just beginning. He usually sees patients that have progressed in the course of the disease to a point where the tumors are too numerous to remove or they cannot be removed. Frankly, carcinoid patients are curable only when they have just one or two tumors. The average time it takes to get a correct diagnosis of carcinoid cancer is five years; the patients usually get to a cancer center when they have many tumors across the abdomen or in the lungs. So doctors rarely see a patient at the curable stage.

Dr. Z, my oncologist, had the attitude that we were going to manage my cancer with medication. (That is a new concept in cancer treatment: you manage the cancer. I have seen it demonstrated by breast cancer patients who realize that their disease is terminal, but in their remaining years they will go through the necessary treatments and surgeries to help them live as long as possible. One mother with a fourteen-year-old daughter said she planned to live long enough to see her daughter graduate from high school and college and get married. I hope she does that.) I was coming in for regular check-ups, blood-work, and scans. Since we couldn't see the tumor, there wasn't much else to do. That is when I sent out the email saying that I was going to Romania; my doctor said I was good to go.

I went in to see my surgeon in May 2008, thinking that I could go on the Romania missions trip in July. My daughter, Katie, had gone two years earlier, and she loved it there. She wants to be a missionary. I was finally willing to get out of my comfort zone to go serve God in Romania. He was calling me there, and I was willing to go through the discomfort to be there. I was also excited that we were to give our testimonies, so I could tell how much God loves us and how God had been with me through my latest adventures. I had no idea that 20 minutes after I entered the examining room, I would be consenting to major surgery.

Dr. DI wanted to surgically resection my small bowel. He wanted to remove the portion of the small intestine where the first tumor had been, based on his experience that other tumors show up nearby the site of the primary tumor. While my surgeon was on the phone with my oncologist, the resident explained to me that Dr. DI hoped to effect a cure by removing this two-inch section of the bowel (the proximal duodenum). The doctors never said two-inch, they just held up their fingers that far apart. So I was set to have surgery as soon as I finished teaching in June.

I continued to teach until the end of the school year. It was difficult. I was weak and dizzy. My brain didn't function very well and I had to find easier ways to say things and do things. I would wheeze when I coughed, another carcinoid symptom. All the symptoms I have mentioned earlier in this blog continued. And I was very, very tired.

I told a friend that I didn't want to go straight into surgery on June 12th. I was exhausted and needed to rest. And, as she pointed out, I needed to be stronger to recover from the surgery. Her doctor had told her not to have her cancer surgery until she was ready. So I called the surgeon's nurse two weeks before I was scheduled to have surgery and asked for a one week delay. She could only arrange it two weeks later on June 27th. That was fine. My resection of the proximal duodenum was scheduled for June 27, 2008.

I remember driving home from the Cancer Center before my surgery thinking that it really was going to go through, and I was going to have part of my intestine removed. There was nothing I could do to stop it. I felt alone. So as I drove up the 57 freeway to get on the 91, I suddenly noticed what was playing on the CD I was listening to. It was a new CD by delirious? called Kingdom of Comfort. The song is "Stare the Monster Down." I had listened to it a few times before; suddenly I noticed that Martin Smith was singing about his father's cancer.

"Eighteen weeks of chemo; six doses of hell.
A family bucket of pills a day to keep my father well.
Stare the monster down! Stare the monster down!
Is there, is there any room in Your arms of love to carry us, carry us away?"

One more time God sent me a song that was exactly what I needed when I needed it. I wasn't alone. God was with me right then and He would carry me through my cancer.

The Second Surgery, June 27, 2008

My surgery was on a Friday afternoon. I went through the preparation the day before and stopped eating. I didn't realize that the swallow of water I had on Friday morning would be the last one until Monday.

My friend, Paula, drove Katie and me down to the hospital in Orange, California. My father and Richard came soon after. The surgery was at UCI Medical Center. They are building a beautiful new hospital connected to the old hospital. What was funny is that there was no restroom in the pre-op area. An employee explained that there would be one in the new hospital, but until then, I needed to use the visitors' restroom. It was just kinda funny to wait in line with the moms and children to use the facilities.

There is a point before a procedure, when I have to go into my shell like a turtle. I usually listen to music: Messiah by Handel, or anything by David Crowder*Band or Jeremy Camp.

The nice thing about surgery is that you get to sleep right through it; you don't realize 4 hours have gone by. When the anesthesiologist gives me the "happy juice" in pre-op, I may not even remember going down the hallway. After this surgery I did remember something about being the the operating room. It was probably after getting to the operating room and being moved around. I remember movement or someone being near my head and right arm. I didn't see anything.

The time from 1:00 to 5:00 was not all spent on surgery. I realize the staff must have spent some time positioning and draping my body. I had a special IV put in next to my left collarbone and stitched in place. Then the doctors did an endoscopy with an ultrasound to locate the new tumor and find the location of the primary tumor. They were going to remove that section of my small intestine. Before removing that tissue, they did a laparascopic exam of my liver. I had four lesions there that showed up in a CT scan, and one of the lesions was removed. A six-inch incision was made to remove a section of the small intestine next to the stomach.

When I woke up, one of the female residents was walking past me saying, "We didn't need the Octreotide. What do I do with it?" I was glad to hear that. Octreotide is administered during surgery if the patient has a carcinoid crisis (heart stops). So I didn't have a carcinoid crisis, but I did have a doctor who was aware of them. It's nice to know Dr. DI is up-to-date. Some carcinoid patients don't get adequate care for years because the disease is very rare.

After the surgery, I went into a unit that was in between intensive care and regular care. It was the unit where the patient has be be able to administer her own drugs by pushing a button on the IV. I was on morphine.

I was in the hospital for 5 nights and 6 days. Five nights of sleeping for one hour before midnight, then sleeping from 1:30-3:00 am, and sleeping another hour (maybe) before 8:00 am. The intern assigned to my case, Dr. Washington, stopped by to see me about 5:50 each morning. He was a tall, strapping fellow with a broad smile. Dr. DI and his medical students would come by later in the morning.

I remember my first morning in the hospital. Dr. DI and troops arrived at my door. He let the two ladies come in first, then followed them. Dr. DI was shorter than the women, so he leaned to the right to see me. "Your liver looks great!", he said. Good news because carcinoids can go to the liver, and he's a liver expert, so he would know what a healthy liver looks like. He's a hepatobiliary surgeon.

God is With Me in the Hospital

I passed some very painful nights in the hospital, but it gave God an opportunity to minister to me in a very special way. During the first night, I woke up almost unable to move because of the fresh incision and surprising weakness in my arms. I had slid down in the bed and couldn't move. I had an IV in each arm and nasal-gastric tubes coming out of my nose. I took a look at all the tubes intertwined and gave up trying to move. All I could pray was, "Help me! Help me!"

Instantly, God gave me a picture of what was happening. It was as if I was in the room one floor above me and looking down. I could see myself in the hospital bed. Three inches away from the right side of my head was a shining, golden orb. It looked like a small oval platter, but it was a few inches thick. As I looked, I jerked my head to the left, and the "platter" moved to the left. When I turned back to the right, it followed me to the right, always staying only three inches away from my head. I remembered a verse I had not thought of since childhood, "There is a friend that sticketh closer than a brother ." KJV

So God showed me that he was right beside me; I was not alone. I marveled that He helped me to remember a verse from so long ago. I had hope that when I needed it, other verses I had learned would come to mind. I think of these visions as pictures that God sends to comfort me.

Since then I have done some reading, but not a whole lot, to ascertain what I saw. Was it God? Was it my guardian angel? I learned that people don't actually see God, in most cases. Moses saw the backside of God as He passed by. Then Moses' face glowed so much when he came down the mountain that he had to veil his face. (Please leave a comment if you know another instance.)
The others in the Bible are agents of God. The men who came to talk with Abraham were agents of God, not God Himself. Humans cannot look on the glory of God.

Therefore, I decided that the glow represented my guardian angel. Others have seen their angels as a light or a glowing figure, so I'm going with that. Many years ago, I think it was on the Phil Donahue Show, there was a woman guest who could see a person's guardian angel. Woman after woman in the audience asked if she could see her angel. The guest would tell the woman what color her angel was. One woman had two angels. I wish I could come across that information again because the color of the angel had significance.

After a few nights in the hospital, the pain from the incision was eclipsed by the pain in my neck. One morning Dr. Washington, my intern, came to check on my pain level. I told him about the pain in my neck and ranked it a 7. It really felt like an 8, but I didn't want to sound like a baby. Then he asked me how the incision felt. "Oh, it's not that bad, more like a 5." He wondered if I had been positioned in the wrong way during the surgery.

The next night, I remember Elena was my attendant, I woke up after the nap I took around midnight. (Elena was a wizard at arranging pillows to make me comfortable.) The pain in my head and neck was excruciating. I called Elena and had her help me get out of bed. It felt like my neck was collapsing down on itself, as I slid down in the bed. My neck felt compressed, so I wanted to stretch it out. God must have given me the idea, because I didn't even think about it. I said I need to sit up in the chair with a pillow between the top of my head and the wall, and pillows to bolster me on the sides. Then I wanted to have my feet pushing against something strong for support. Elena didn't protest. She set me up with pillows, and moved the bed over so that I could brace my feet against the rod that stretches down the side of the bed about 1 foot off the floor. I leaned the top of my head against the wall so it would stretch my neck, and started to pray.

I stayed awake for half an hour. I didn't realize I had fallen asleep until I woke up 1 hour and 15 minutes after I got out of bed. When I woke up the pain was completely gone. The cool peacefulness of the Holy Spirit was in the room. I called Elena. She helped me get back in bed, and I fell asleep. I never had any more neck pain while I was in the hospital. It was the first time God had ever answered my prayer to take away my pain. Twice in my life others had prayed for me and pain went away, but I couldn't do it for myself.

People Who Helped Me in the Hospital

I'm writing about the different people I met in the hospital partly so I remember them and partly so I remember things that give God glory. I remember the Monday morning I first sat up in a chair. The nurse and attendant got me out of bed, bathed me and washed my hair. I sat up in this plastic chair feeling totally forlorn, old and alone. I could hear other people with visitors, but I was alone. Then Dr. Washington, my intern, came striding down the hallway. When he saw me, he stopped from his appointed rounds, and came into my room with a big grin on his face.

He said, "You look great! How are you feeling?"

After we exchanged comments, he went on his way. I tried to figure out how the heck he thought I looked great. Then I remembered he had never seen me before Saturday morning. He had just seen me with grey hair sticking out in all directions, no make-up, and in great discomfort. So I guess to see me sitting up with a clean face and wet hair going in only one direction was a great improvement. Plus the nasal-gastric tubes were gone.

That was an adventure. The two guys that did my x-rays to see if the *nasal-gastric tubes could be removed were a hoot! Imagine my delight when I hadn't been allowed to eat or drink anything for days and was told I needed to have an upper GI x-ray done on Monday morning. How the heck was I going to swallow that stuff?

So that was the first thing I asked the technician when I was taken downstairs to have the x-rays done. He said I didn't have to swallow barium; it was more like a nectar, but it didn't taste like nectar. He saw that I had about the same amount of grey hair as he did and decided I was a kindred spirit. He told me about his previous line of work managing inventory in a warehouse. Several years earlier he decided to make a change and became an x-ray technician.

He was still telling me stories when the doctor came in. The doctor hardly had any hair, so he fit right in. So the two of them helped me to lie down on the table that raised me up so I could be x-rayed. They needed to see if the stitches were holding all around my small intestine before I got to eat or drink anything. The tech would ask me if I was in too much pain to lean to the left, then farther left, etc. Then he would move my body and hold on to me during the x-ray. The two men even did the old joke about, "We haven't dropped anyone this week!" They were great fun, and I got to go upstairs and start on a liquid diet afterwards. (I saw the technician at the hospital on 3/09/09 in the cafeteria. I thanked him for giving me the laughs I needed.)

*Nasal-gastric tubes remove liquid from the small intestine and send it out through nasal tubes that emptied somewhere behind my hospital bed. Without having them in place my abdomen would have been very distended from the bile that was coming out from my liver, but didn't have any food to work on. The nurse told me that Dr. DI is unusual in leaving those tubes in place for a few days after surgery. Other doctors remove them more quickly, and their patients get all swollen up. Dr. DI liked to use the nursing unit I was on because they understood his practice.

I also want to remember Alice. She was my primary nurse. She worked the night shift, and I saw her on two nights. She told me usually she sees her patients more often than that.

I wish she had been my nurse for one more night. That was the night I had to get out of bed and go to the nurses' station and insist that I get to see my nurse or attendant. Twice another attendant from across the hall had run in for a few seconds to help me, but then he would run back out. The last time he had placed a pillow firmly against my back, but got out of there so fast he left the door open. So I went to the nurses' station and insisted someone stay with me until I was 100% situated to go to sleep. My nurse appeared and stayed until I was comfortable. She had been with a patient that was isolated because of a contagious disease, so she had to put on protective clothing and stay with him for awhile.

Alice was there the first night I was in the hospital. She explained to me about pushing the button on the IV to release a dose of morphine. I don't remember anthing else about that night except God showing me my guardian angel. In the morning Alice was laughing when she checked the counter on the IV. I had pressed it 100 times during the night. I don't know how I pressed it that often, unless I pressed it while I was asleep. Alice explained the IV would only give one dose per 10 minutes. After that I tried to wait 15 minutes before I asked for more morphine.

The second night Alice was my nurse it was very quiet in the ward. My left wrist had gotten swollen and red at the IV. She moved the IV to a different spot. She also removed another IV that was near my left collarbone. It was held in place by a stitch. This was a special IV that was put in just in case I went into a carcinoid crisis during the surgery. The stress of surgery can cause a carcinoid tumor to release lots of chemicals, so this IV was installed so the doctor could send a bolus of Octreotide toward my heart if necessary. A carcinoid crisis can kill a person.

(A bolus is a big chunk of something. You can have a bolus of food moving through your small intestine, or it can be a big dose of a drug.)

So "Dr. Alice" operated on me in the middle of the night. This collarbone IV seemed like it had a tube in it to direct the drugs toward the heart; it wasn't something that could be taken out easily, or my day nurse would have taken it out. I laid there quiet and still so Alice could remove it. I marvelled at how quiet the ward had been for at least 30 minutes. Alice pulled the tube out and told me I was very brave. I said I figured it would be easier for her if I was as still as possible.

Back at Home

When I got home on July 2, 2008, Richard and Katie took care of me. I remember wondering if I would have trouble sleeping with the discomfort from the incision. Instead, I fell asleep two seconds after my head hit the pillow. I remember Spunky coming into the room to sleep by me.

A day after returning home, I was awake with very strong abdominal pain at 2:00 am. I turned to my Bible and looked up references to pain. They pretty much were all about pain being the result of doing something wrong. That wasn't what I was looking for; I needed some comfort from pain.

One passage sounded better than the rest, so I turned to Job 33:19 and kept reading.

Or a man may be chastened on a bed of pain
With constant distress in his bones,
So that his very being finds food repulsive
and his soul loathes the choicest meal.
His flesh wastes away to nothing,
And his bones, once hidden, now stick out.
His souls draws near to the pit
and his life to the messengers of death.

Yet, if there is an angel on his side
As a mediator, one out of a thousand,
to tell a man what is right for him
to be gracious to him and say
"Spare him from going down into the pit;
I have found a ransom for him."
Then his flesh is renewed like a child's;
it is restored as in the days of his youth.

He prays to God and finds favor with Him,
he sees God's face and shouts for joy;
he is restored by God to his righteous state.
Job 33: 19-26 NIV

I read the passage three times. By the time I was finishing the third reading, the pain was gone. That was the second time God answered my prayer for relief of pain!

At first, I recovered quickly. One week after my return home, Katie was leaving to go on the mission trip to Romania, so we went out to dinner to celebrate. I remember sitting up in a wing backed chair eating filet mignon and talking. In the next few weeks, I didn't have as much strength as I did in early July and I was baffled. Later, I found the weakness was because I was suffering from infections.

One month after my surgery, I was in the emergency room at UCI. I'd had a region alongside of the incision where it felt firmer than most of the incision. I thought it was scar tissue. After some days passed, that area felt tender to the touch. Then there was the day the area was red, hot, and swollen. That's when I went to the ER. The resident who had been with Dr. DI in the hospital drained the wound for me and prescribed the antibiotics. A few weeks later, in August, I realized I must have a UTI from using a catheter in the hospital, and I got that treated before school started. So I went back to work eight weeks after the operation in reasonably good health. Note well, I did not feel well at 6 weeks yet, so don't be discouraged if your recuperation takes up to the last minute to be complete.

God Reminds Me that He is There

During 2008, I realized that I had developed a greater trust in God. I knew it was different than having faith in God, so I looked in my Bible dictionary to see the definition of trust. My Bible dictionary said that trust is the same as faith; the two words have the same root word. But what is happening to me wasn't saving faith or healing faith. I already had those. I was learning that faith grows through experience. Now I was totally (at times) relying on God to figure out what was happening to me and to take me through it.

As I continued reading books that I was drawn to, I found an excellent explanation of trust in Joyce Meyer's book, How to Hear from God. In the book I noted that I read it on Oct. 3, 2008.

Quoting Joyce Meyer: "Many Christians memorize Proverbs 3:5-6 which says
'Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all your ways acknowledge Him and He will direct and make straight and plain your paths.' But they tend to forget that trust is for the times they can't get answers as quickly as they want them.

It isn't necessary to trust God when we have full understanding and knowledge of what He is doing on our behalf. The Hebrew word translated "trust" in verse 5 means to be bold, confident, secure, and sure.* Trust is needed in those times when, for whatever reason, we are not hearing from God as clearly as we would like.

Before we hear from Him, we need to learn to rely on His character, ability, and strength during the times we are not hearing from Him. If we trust Him during those times, He promises to make clear the way we should go."

* Joyce's footnote: James Strong, "Hebrew and Chaldee Dictionary," Strong's Exhaustive Concordance of the Bible (Nashville: Abingdon, 1890), p.20, entry #982, s.v. "trust," Proverbs 3:5, batach, "be bold (confident, secure, sure)."

God had sent me the answer to my question, "What is trust?" I just had to wait a few weeks to find it.

One morning during the summer I was driving back to Orange to the medical center for a wound check. I was reviewing what had happened during the summer, and I suddenly began to panic about what would happen if there was a third tumor. After each surgery I hoped that it was the last one, but I was frightened because my tumors are less than 1 cenimeter across. How could the doctors find it? Where would it be? The doctors had removed the area in my small intestine where the first two tumors developed. A third tumor could be anywhere in my body and too small to show up on a CT scan!

Suddenly, I was aware of what was playing on my CD. delirious? was singing the song "Miracle Maker" The song is about the paralyzed man at the pool in Bethsaida. He thinks of Jesus as the miracle man and hopes Jesus will heal him. He watches Christ come closer and closer, and at the point where I tuned in he was singing, "I'm looking in the face of the Miracle Maker!"

I heard that and I totally relaxed. Yes, that was how the doctors would find the third tumor. The Miracle Maker would lead them to the tumor. I still believe this today March 23, 2009.

Symptoms Begin Again

School was to start on August 25, 2008 and my surgery had been on June 27, 2008. So I went into my classroom on August 20th to clean up and set up bulletin boards. I felt well enough to begin the school year, and things went well. By the end of the first week, I noticed that one of my cancer symptoms was back, but I thought it might have been from stress. Another week later, I still had that one definitive symptom that is always the first one I get, and the next week I started feeling the hot flashes. So I began the round of doctor appointments again.

Taking My Body Back from Cancer

I'm looking back at the inches I have lost since I started going to Curves on July 7, 2004. I weighed 152 pounds then. I have a graph that shows a consistent decrease in inches from my beginning date until Nov. 2005. Then I struggled with going up and down for awhile. I remember my weight would keep going back to 138. My lowest weight and lowest number of inches on my body was the summer of 2007. So I have been thinner in the past than I am now.

I’ve been doing well at losing weight and exercising on the diet I began at the first of February 2009. In three weeks I’ve lost 5 ¾ pounds, taken two inches off my hips and 2 ¾ inches from my abdomen. I’ve lost an inch from my chest and an inch from each thigh. And I've lost a whole 1/2 an inch from my waist! Will wonders never cease? (sarcasm) To lose over 5 pounds in 3 weeks is unusual for me. Usually I lose 5 pounds in 5-6 weeks if I stay motivated. That’s IF I stay motivated.

I don’t feel deprived this time because I’m approaching this from a position of power. I’m claiming my body back from cancer. I was strong and fit before I developed the tumors, and I’m going to be strong and as fit as I can be with cancer. I realize I’m going to have to repeat this each time I have surgery or have an increase in tumors. However, right now I feel well enough to take on a challenge.

In the summer of 2007 I was finishing up three years of going to Curves. Five years earlier my weight had climbed to 166 and I didn’t want to see how heavy I had gotten, so I quit weighing myself. A few months later a group of women at church began a class to lose weight together. My goal was to lose 40 pounds, and in five years, I had done that; I weighed 127. My muscles were strong; I even had muscle definition in my arms and legs! In August 2007 I thought I just had to lose 3 more pounds of belly fat to be just right. I had worked out 300 times at Curves and had the T-shirt to prove it. So for the first time in my life I was slim and strong at the same time. And I didn't start excercising regularly until I was 51 years old.

By November 2007, I could hardly excercise at all. I would go to Curves, but be too tired to complete a circuit. In December I remember being in pain when I would work on the machines. In December I also began to have chest pains at times when I was excercising. This is when I acquired a cardiologist and a rheumatologist. My internist, Dr. B, was very thorough in trying to figure out where the problem was.

Now I have cancer. It began when I was at that strong place in 2007. My body was as good as it was going be. All I know now is the song about God that says,

"Let not the rich man boast in his riches. Let not the strong man boast in his strength... I will boast in the Lord most High; I will boast in the One who's worthy!"