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!
Saturday, May 30, 2009
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.
Friday, May 15, 2009
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!