July 24, 2009

I could write about a lot of things this week. I could write about our excruciating battle with the stomach flu, and you might laugh about how after Gaye (Ward’s mom) came and watched the kids so I could go to the doctor, and cleaned up more than her share of sickness, McCady said, “Mom give her a check, she deserves it.”

I could write about Ward’s 35^th birthday, where we bought him a bike that was too tall for him. I mean, really, I might be bike-naive, but he’s not the shortest guy in the world!

I could write about my friend who offered to do anything for me, including finding me some marijuana, you know for medicinal purposes! (BTW She was completely joking!)

It would be really funny to write about how I ordered all my kids school clothes online—and then accidentally shipped them to my friend’s house in Ohio!

There’s a lot to write about, but what I’ve been avoiding the most is what I have to write about.

Disclaimer: It’s long and involved and if you don’t read it I won’t feel bad.

Since I arrived home from Colorado last Friday things have taken a sharp turn in a direction I never expected. I didn’t really feel comfortable about the two phase I trials they presented to me. So Saturday, Sunday and Monday I began a search of clinical trials across the country, just to see what my options are.

I’ve been holding out for the trial at UCLA—it is called a RAF inhibitor. Its purpose is to inhibit the growth of the melanoma cells from their beginning. If you were to see the growth of the cells they would grow

RAF-RAF-MEK to create the tumor.

The study had closed, but Dr. Gonzales said in a couple of months they would open it up in Colorado, UCLA and Harvard. I don’t have a couple of months to do nothing.

So Monday after lots of research, and running into huge roadblocks in my trial research, I talked to Maude. She is Dr. Gonzales’s right hand and she’s been the one guiding me through this whole process. Long story short, Dr. Gonzales found out that I was excluded from the RAF study because I have thyroid cancer along with the melanoma. She offered me a MEK inhibitor phase I trial. The problem with this is that I would basically be living in Denver for the first cycle of the treatment away from my kids and Ward. Plus the purpose of a phase I trial is to determine what the side effects are, as it has never been tested on humans. There are no foreseeable benefits for helping my disease. Additionally I spoke with the study coordinator who let me know that one lady had quit the study because she lost her vision.

I asked Maude to honestly tell me what we could do, now that I was excluded from the trial I’d wanted—what was my future? I’ve never seen Maude get emotional—never, but she broke into tears and said, “It’s just this damned disease, Anne. You’ve fought it hard for 18 months. If we had something for you, we would give it to you in a second.” She went on to say that I’ve exhausted all my options for approved clinical treatment, and now because of other factors I am excluded from the rest of the clinical trials.

Sure there were Phase I trials, but they are what they are, a trial to see how much a human can take of an experimental drug. They require huge amounts of time on site, and since there are none offered in Utah then I’d have to be away from my family. She told me that I have to decide what I’m going to do, if I’m going to spend my limited time here searching after trials across the US and out of the country, or if I’m going to spend that precious time with my family.

You’re probably saying to yourself, “That’s crazy, there’s got to be something.” I said the same thing, however in my search for trials I found that there are two main things that exclude me. Phase II trials for melanoma will A. not accept a patient who has two different types of malignancies. (And I have the blasted thyroid cancer too) B. Not accept patients who’ve had prior systemic treatment. (I’ve had plenty).

I’ve been angry and frantic and working my tail off amidst a week of terrible stomach flu to find something, anything, anyone who would take me for their trials. I’ve contacted the National Cancer Institute, and MD Anderson, and UCLA, and Harvard, and Huntsman Cancer Institute, and Las Vegas Cancer Institute and Johns Hopkins, and Goshen Medical Center. All have been helpful to different levels, but all have given me the same answer, “We’re so sorry for your situation.”

So, it’s been a week of reflection and prayer and tears, and begging for help. I can say that I got some relief on Wednesday when I went to see Dr. Gray. He understands me and my situation in a different way than any other doctor. He told me he would help me in any way he can. He’s going to try to help me get a drug called Avastin, which is not approved for Melanoma, but is being tested in trials I’m excluded for. He’s going to help me contact some drug companies to see if they can help me get some drugs that I just can’t get any other way. I’m grateful for him and his understanding and a glimmer of light.

So where am I now? I am literally sitting by a swimming pool (under an umbrella, shaking my head at all these sun-worshippers) in Park City with Ward and my girls—we ditched everything, including the stomach flu, and just got away. Where am I mentally? I don’t know. We’ve known from the beginning this is a terminal disease.

We know that we have been blessed beyond measure to have the time we’ve had this last year. We know more than anything that we are in God’s hands, and he knows much more about this that we do. How grateful I am to have a testimony of the atonement of Jesus Christ, that he knows how I feel, and that because of His sacrifice, and the promises I made in God’s holy temple that I will live again and that I will be with my family for eternity.

Whatever the next few months bring, I want you to know that I am grateful for you. For being my friends and my support.