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.