Monday, August 23, 2004

After GK

Monday, August 23, 2004 11:57 PM CDT

MONDAY

Dave went to work today from 8 am to 3 pm and then football practice from 3-5 pm. He came home and looked great. His eyes are less puffy. He had a little headache, but it went away with tylenol. How strong is this guy, anyway?

He's icing his head and going to bed early.

We're still waiting to hear from Dr. Spence at UW. Guess I'll have to rattle some cages tomorrow.

KOKO (keep on keepin' on)
Love you all, Shelley

Dave's Story

Monday, August 23, 2004 11:56 PM CDT

THE HISTORY

For those of you who don't know the full story of Dave's brain tumor saga....here's the copy I just submitted to virtualtrials.com There's more to add, but this is the basic story.

Dave Meyer’s Story

In 1996, my husband, Dave, was 33 years old with two small boys and a baby girl. He was a high school history teacher who coached football and basketball, working out with his teams and riding his bike to school. He was full of life and energy and love for everyone around him. His life motto has always been, “Use things, love people.” He had a few headaches, but attributed them to fatigue. He was considering visiting the doctor, because he noticed during basketball games he’d occasionally be overcome with a funny, surreal feeling and sounds were distorted. But before he could make that appointment, the world crashed in. He was driving to Portland with his brother, early in the morning, December 23, 1996. They hit a patch of ice and the van rolled 3 times. The state patrol called our home to say he’d been taken to the hospital. It took me over an hour to locate the right hospital. By that time, I was frantic, but when I finally talked with the ER nurse, she said, “Yep, they’re cracking the nurses up. Your brother needs a stitch over his eye, but that’s it. You can come get them!” “Whew,” I thought, “That was close!” Little did I know.

When I walked into his room, Dave said, “There’s something growing in my head.” I looked at the doctor and said, “Is he okay?” thinking Dave was one fry short of a happy meal. The doctor said, “Not really,” and popped a CT film over the lights. They had done the scan because his heartbeat was irregular and his eyes were unequally dilated. Even to my untrained eye, the tumor was huge, taking up fully a quarter of his head and pushing his brain to the side. “That has to come out,” I said. “You got that right,” said the doc. “If he hadn’t been in this accident, he’d have been dead in a month or two.” Who knew you could be grateful for car accidents?

So, we were off to the nearest neurosurgery center, which happened to be in our hometown, Walla Walla, WA. We saw the neurosurgeon that night and they did an MRI. They put Dave on decadron and dilantin and sent him home for Christmas.

Dave had surgery on January 6, 1997. There were 20 people in the waiting room, pulling for Dave, all with “sympathy bandages” on their heads. The doctors were unable to remove the entire tumor because it was wound around some major vessels and his optic nerve. The diagnosis was anaplastic astrocytoma grade 2-3. The neurosurgeon had said earlier that if it was “cancer” that it was probably a slow-growing variety, since the tumor had grown so large with so few symptoms. Even though they said cancer, we were feeling pretty confident that it was slow growing and all would be okay. Until I got to ICU. The nurse was a friend of Dave’s from high school and she was crying. She wouldn’t look me in the eye. I knew I didn’t have the full story. So back to the neurosurgeon I went. “Tell me the story again.” Finally, he asked if I was asking for numbers. I said, “Yes, I guess I am.” He said, “With treatment, 80% of the people with this type of cancer live 2-3 years.” My mind reeled. WHAT??? He has 3 small children who need him. This cannot happen. But I knew that Dave had never been at only 80% his entire life. He had to be in the group that lived, he just had to.

I told Dave about the diagnosis. He smiled his famous smile and said, “Get me out of this place. Hospitals are for sick people!” He went home after only 3 days of charming the nurses. A few weeks after that, he made a surprise appearance at a community concert: “Conspiracy of Hope.” This concert benefits a different charity each year, and Dave was instrumental in getting it started a few years before. He sang a song that he wrote for our son, Kenny, who has autism. It was wonderful, and the crowd went wild!

Dave had 33 sessions of radiation. Our entire community was praying for him, bringing us meals, helping with the driving and the kids, bringing meals and groceries to our home. He went back to work right after radiation began. Staff had donated enough time for Dave to take the entire year off, with pay, but he went back to work after only a few weeks. The radiation oncologist said, “Well, what’s the plan here?” And Dave replied, “We’re going to kick its butt!” His strength and attitude are inspiring.

Dave continued to have MRI’s every 3 months. After 6 months, the residual tumor began to shrink away. Pretty soon the scans were deemed “clean” and only taken every 6 months. Dave just continued doing all the things he’s so good at, teaching, coaching, singing and inspiring. He often said, “It ain’t nothin’ but a thang. There’s a reason I’m still here.”

Dave’s tumor showed some growth 6.5 years later, March of 2004. After much consultation, he had another surgery, this time at the University of Washington. Then he began a regimen of high-dose temodar. He took this chemo for 21 days then rested for 7, as opposed to the usual take for 5, rest for 23. And right after he started chemo, we decided to take the kids to Disneyland. Kate came down with chicken pox the morning of our second day there. Isn’t that just typical? Oh well. Even then, Dave managed to smile.

Dave continued on the chemo for 14 months. During all this time, he continued to teach, coach, play music, and encourage hundreds of kids, especially his own three.

Just this last week (8/19/04), Dave was at UW again for gamma knife radiation to treat two tiny tumors that were found on his last scan. On his website, www.caringbridge.org/wa/davemeyer you can see his incredible smile as they screwed the frame into his head.

Today, he’s 41 and grateful for every day. He celebrates his survivor status by saying, “Well, sometimes you have to excuse me if I act like a kid…I’m only 7 and a half in my new life!”

When he first found out about his tumor he said, “My first goal is to be home for my baby girl’s first Christmas. My next goal is to dance at her wedding.” We all have no doubt…he’ll be there!

Saturday, August 21, 2004

After=GK Update

Saturday, August 21, 2004 9:52 PM CDT

SATURDAY

Hello all. Dave continues to do amazingly well. He went to football practice today. 9-12 and 2-5. It wasn't too hot today, only about 87, so that was a blessing.

He does have a lot of swelling on his forehead and puffiness around his eyes today. I think he's probably been on his feet too much. He's putting ice on it and resting now.

Thanks for all your continued prayers and support. Dave says he can definitely feel it. He says he feels lifted up. I say, okay, as long as Jesus doesn't lift you ALL the way up. :-)

Friday, August 20, 2004

Home Again

Friday, August 20, 2004 11:36 PM CDT

FRIDAY NIGHT

TO CHECK FOR NEWS ABOUT THE GAMMA KNIFE, SEE JOURNAL HISTORY

TO SEE PICTURES OF THE GAMMA KNIFE, SEE PHOTO ALBUM

We're home now. Dave was sooo glad to see the kids. He looks really great. He's been on the phone non-stop since he got home.

He's planning on going to football practice tomorrow. They have daily doubles in 100 degree heat, from 9-noon and again from 2-5 pm. He's amazing.

Forgot to tell you all that he wore his Walla Walla Blue Devil Football shirt that says "COUNT ON ME" like he did for both surgeries.

The picture on the front page is a picture of Dave playing guitar at Erik & Evy's house last night. He stayed up way too late singing and playing with Erik, but as he says, "It was good for my soul." He was so happy to be with Erik again and to play music.

Sonja and Canute, Evy & Erik's two children, were also a trip highlight. Canute sang along with Dave a number of times, and Dave danced the Charlie Brown dance while Canute played Charlie Brown's theme song. Sonja played and sang as well, and watched the Olympics with me. It was a very special time, and seeing them, as well as Peter and Mark, made us miss living near Seattle, it's easy when it's not raining!!

Thanks for all your support. Thanks to Denise for sitting with me yet again, and always being there when I need her. And to the grandparents for watching the children. And to Peter for a lovely post-GK dinner!

Please continue to pray that over the next 4-6 weeks, the radiation will do its job and as Diane Phillips says, "annihilate that annoying sucker!"

Love, Michelle

Thursday, August 19, 2004

Harborview III: Back to Chez Haroldson

Thursday, August 19, 2004 9:03 PM CDT

THIRD THURSDAY UPDATE -- CHECK JOURNAL HISTORY FOR PREVIOUS UPDATES

Hi everyone, it's 7:00 and we're back at Erik and Evy's house. Dave came through the procedure remarkably well. He did have a pain pill after they took the frame off his head. He's been icing it, trying to prevent swelling where they screwed the pins in.

Right now, he's sitting with Erik and playing Erik's guitar. It's wonderful to hear him play and sing. He has an incredibly happy heart. It's amazing to see the affect Dave has on people. The nurses at the hospital just love him. His generous spirit touches all those around him. He even helped Denise and I finish the last answer on the crossword puzzle!

Now we wait. They said that we could expect headaches, fatigue and nausea in about 4-6 weeks. That's when the tumor cells will begin dying off. They'll do an MRI around that time frame to see what's happening. They did say that if other small tumors do pop up, they can use the gamma knife again. This is good news, although we're praying REALLY hard that we NEVER have to do that.

Meantime, we'll be blasting it with a new chemo. Hopefully we'll find out very soon what that will be.

Dave has certainly felt your prayers and support today. He said that after they put in all the lidocaine (which was pretty ouchy) and were beginning to place the first screw, he felt overwhelmed with anxiety. Suddenly, he felt a sense of deep peace wash over him and he was completely calm.

I've got to get some sleep. Thank you to everyone, please continue to lift Dave up in your prayers for healing. Thank you to the prayer warriors who met at church today. Thank you to Denise for sitting with me. Thank you Peter, for making us laugh. Thanks to Mark for your hugs. Thanks to Janet for "McDonalds" money. Thanks to Erik, Evy, Canute and Sonja for opening your home to us.

Love, Shelley

Harborview II: MRI Results

Thursday, August 19, 2004 1:02 PM CDT

It's 10:00 am. Dave is in the machine, receiving the radiation right now. He is listening to Switchfoot, Audio Adrenaline & Relient K. He'll be in the machine for one session of 62 minutes and then a second session of 24(?) minutes.

The MRI did not have good news for us. The lesion that they had seen before has grown since July 19. They also noted several other areas of growth. One area that was significant is in the motor area. These other new lesions are very small, but they feel they represent true growth, not just an abnormality of the scan. The good news is that they can treat these lesions as well, so they are going to treat all the tumor growth that is visible.

We'll need to meet with Dr. Spence at UW about a new chemo regimen to take care of the cells that are growing, but are not yet visible on the MRI.

It's very scary news. Please keep praying. Dave is holding up well, and taking strength from all of you.

Love to all. Michelle

At Harborview

Thursday, August 19, 2004 12:05 AM CDT

Hello, we're at the hospital now. Dave has had the frame placed without any medication at all. He's feeling very tough and macho about that! He had a snack (thanks Evy!) and will be going into the machine about 10:30.

Thank you all for your prayers. He's really feeling the support, says he's feeling a great sense of peace.

Will update you on the progress as we go.

Denise and I have almost finished the jigsaw puzzle!

Love you all!

Tuesday, August 17, 2004

Tumor Board

Tuesday, August 17, 2004 1:13 PM CDT

We met with doctors at Harborview yesterday. Dave has a new growth in his right frontal lobe. This new growth is very small, but it was not evident at his MRI in May, and shows on the MRI in July. It's quite scary that it has grown so quickly, and is in a new place. It's also scary that it grew while Dave was on temodar (chemo).

The doctors from the tumor board are recommending gamma knife. Gamma knife is high intensity radiation that is very accurate and focused on the tumor growth. There are 201 beams aimed at the tumor. (See the main page for a link to information about gamma knife, you have to scroll to the bottom.)

On Thursday, August 19, 2004, Dave will undergo gamma knife at Harborview in Seattle. We are hoping that this will halt the growth of the tumor.

He will go into the hospital at 7:00 am and they will place a halo or frame around his head, by screwing it into his skull (ouch! They will give him some IV pain meds). They took x-rays yesterday to determine the exact placement, because they want to avoid the area of his past surgeries, because this area is vulnerable to fracture.

Then they will do an MRI to determine the exact area of the tumor. Then they meet to plan the radiation exactly. Then Dave will be placed into the gamma knife machine. Depending on the shape and size and complexity of the growth, he will receive 1-4 "shots" of radiation, each consisting of 201 beams. They say this takes 1-3 hours.

The first MRI after radiation typically looks worse than before because of the swelling. The radiation will ruin the DNA of the tumor cells so it cannot multiply. So we won't know for 3-6 months how well this worked.

Most people tolerate the procedure pretty well, with minimal headaches and nausea. It can induce seizures, however, so they want him to stay in Seattle on Friday. Long term, there are two scary things. One: Dave has a large blind spot in his left eye, a result of the last surgery in June 2003. This gamma knife procedure could possibly damage the vision in his right eye. If that happens, he won't be able to drive. As you can imagine, he's not too keen on that happening.

Another danger is that since Dave has had radiation previously, he has about a 15 percent chance of developing radiation necrosis, which is proliferation of dead cells. This can cause the same problems the tumor does and would have to be removed via another surgery.

We will also have to meet with the neuro-oncologist in Seattle, because the temodar is obviously not working, and we need to decide what route to take.

So, please, please, pray for Dave on Thursday, pray for the doctors, too. Pray for God to heal him of this new tumor completely.

Monday, August 02, 2004

Caringbridge begins...

Monday, August 2, 2004 3:39 PM CDT

This page has just been created. Please check back for additional updates.

I am moving the journal updates from Dave's Caringbridge site to here. They're easier to link to on the blog. On Caringbridge, they are one big chunk. This was the very first post.