Amy Update - March 30th, 2007

The finish line is finally within sight. And on the other side…a new starting line awaits.

Week 5 of chemo and radiation is in the books. Next week was supposed to be our final week of treatment. Now, it’s not.

On the radiation front, we lost a day due to mechanical error, and we recently learned that from the very beginning, Amy was supposed to receive 33 doses of radiation, not 30 like we were originally told. So the last day of bombardment will be April 12. We’re looking forward to this. The commute is a grind, and as promised, the treatments are starting to take a cumulative effect; most every afternoon, Amy needs a 2-3 hour nap. The best part of the experience—besides the companionship of wonderful drivers—is the $2 parking for cancer patients, which amounts to a $10 –plus discount. To quote Amy: “This is the best kept secret in cancer.”

On the chemo front: the final day of pill popping is a week from today—April 6. But the bummer news we learned is that, after a month hiatus, Amy will begin another regimen of chemo. Instead of taking 140 mg of cancer poison every day, she’ll take 250-300 mg five days every month. One week of intense chemo every month, for about a year. As it is now, the dosage gives her some serious stomach-churning quease, even with the anti-nausea meds. Doubling the dosage… well, that could really be a whole bunch of no-fun.

In general, it was a frustrating week in Cancerland. The honeymoon is over with our doctors. They’re very good, but we did learn last week that one of them, the radiation doc, has been dropping the ball on some aspects of her treatment. For example, Amy is supposed to be having her blood drawn and tested on a regular basis. That only happened for the first time last week. And while we were told we would be meeting frequently with our doctors during treatment, that hasn’t been the case; this past Tuesday, we saw the chemo doc for the first time since Valentine’s Day. All of this is a little dispiriting, although I like to look on the bright side and attribute their negligence to the fact that they know everything is going to turn out just fine with Amy.

Looking ahead, the big marker we’re working toward is the post-radiation/chemo MRI, which will likely happen around April 26. We are praying for zero cancer cells in Amy’s brain.

As for the hair loss… well, she hasn’t gone bald, after all. Her hair has thinned considerably, and the top front third of her head is mostly bald. But everything else is staying put for now. (Amy says: “Think old man hippy—bald on top, long in back. But I look lovely in a hat.”) Those who see it for the first time are a little shocked; at long last, here is visual confirmation that yes, Amy has cancer. But you know, you kinda get used to it. And so has she. After some early days of sadness over her shedding, Amy has adopted a great attitude and sense of humor about it, as you can tell. She is often asked if she plans to shave her head and get a wig. The answer is “Maybe.” Which is an answer that really speaks to what I think is a healthy approach to all this. She has a peace about it—not a resignation, but a peace—and that is an answer to prayer. I’m glad that anxiety or vanity isn’t pushing her around. Perhaps at some point she’ll get a wig—but when she wants to, and when it’s convenient, and no sooner.

In other news, Ben turned six; I got two pink-eye infections and a cold; Lauren is exploding with cuteness; and my parents came down for a lovely stay last week. Now, we look forward to a weeklong visit from Amy’s parents. It’s awesome to be so loved and supported by our friends and family.

Finally, a shout out to our friends Jud and Mandy Ream, who gave Amy a great gift last weekend: a T-shirt baring our pet slogan: “Cancer’s a bitch… and I’m slapping it down!” Amy wears it well.

More soon.

Love to all,
Jeff and Amy

T-Ball Season

Yep, its that time of year again, T-ball. This year I have "stepped up to the plate" to coach the Husky Deli T-Ball team. Maddie and a number of others from her Hope class are on the team. So far we have only been able to have 1 outside practice, even with that we were hailed on as we were leaving. Our next practice we had to go indoors at the SLHS gym. Regardless, things are going well. We have a couple more weeks of practice before the first game. We will post game updates and pictures throughout the season.

Week 3 for Treatment

Dear family and friends,

Sorry for the radio silence. Truth is, until recently, there wasn’t much to report. After a rough first week, Amy’s nausea subsided, making the second week something of a cakewalk—the kind of week we thought the first week would be.

But as we round out the third week, calm waters have turned choppy, and I suspect rougher seas lay ahead. Perhaps the wasted energy of this past Tuesday was an omen: we trekked all the way up to Los Angeles, a 70 mile round trip for us, only to find out that the radiation machine was broken, and Amy’s appointment had been canceled, and that no one had called to tell us. We actually took this much better than I make it sound, but still, it was a bummer. We had been looking forward to the idea that by Friday, Amy would be at the halfway point of her chemo/radiation ordeal. Now, that day won’t come until Monday.

Then, Wednesday came, and with it came a cold, hard truth.

Amy is losing her hair.

At first, it was just a few strands a day. Now, we’re talking clumps. The chemo is killing the roots; brushing hair is like pulling weeds. You can’t see scalp yet, but Amy’s hair, that beautiful head of hair, is thinning by the day, and it’s only a matter of days before her tactical, artful combing begins to fail her. Her prediction is that by Monday, she will be bald.

Now, what does this REALLY mean?

You could say it means nothing. After all, it’s hair, so it’ll all grow back. It might take awhile, but hey: small price to pay in the long run. Right?

Or you can say it means everything. We had been praying that this wouldn’t happen. And because God has answered so many of our other prayers, we had every reason to believe he would grant this one, too. But because he hasn’t, perhaps we have reason to worry that God has turned against us, or worse, that God was never there to begin with, and all those “answers to prayer” were just projections on our part. Right?

Or you can say this: God is good, and grants our prayers for the same reason he doesn’t grant our prayers: The dude has a plan, and he wants us to trust him, for better or worse, hair or no hair. But this truth doesn’t make the emotional truth of the experience any less valid. This sucks. It’s an insult to injury, and it burns. It’s just not fair. Of course, any number of theological doctrines would tell us that this IS fair—but screw theological doctrines! Besides, even Jesus wept when his life got hard. And who am I to disagree with his example? Trust. Cry. And trust again. That’s what Jesus would do. And that’s what we’re trying to do, too.

Last week, we were blessed with a week-long visit from my Mom, and at the moment, we are being blessed by a visit from Amy’s Dad. We continue to be loved by our church family with their meals, prayers, and support. Taken together, we’ve been showered with as many miracles as strands of hair falling from Amy’s head, if not more so.

Still sucks, though.

Love to all,

Jeff and Amy

Maddies goes to work

For awhile now, Maddie has wanted to ride the bus to work with Dad, so on Friday we made it happen. Maddie didn't have school due to parent/teacher conferences so we decided this would be the best chance. Maddie put on jeans and her REI coat, just like Dad, and we headed out the bus stop. We left just a little bit earlier since Maddie loaded up her backpack with a bunch of "stuff" and after just a few minutes she was asking, "Daddy, when is the bus going to come?" Pretty quick the bus came by and Maddie had her $1.50 ready to go. Lucky for her, she didn't have to pay since her 6th Birthday isn't until April 19th. We got the best seats on the bus and Maddie was giddy with excitement of the "accordion" and how fast the bus was going.



We made it to work and everyone was excited to meet Maddie. It had been a long time since her last visit, and with all the growth at eProject, there was also a lot of new people that had never met her. Maddie settled into my office and right away setup shop. By far her favorite activity was drawing on the whiteboard. Here is a picture I took with my cell phone. You can see she is right in her element.







After a few meetings, we headed over to Red Robin for lunch and shared a cheeseburger. Afterward we played some ping pong, rode razor scooters, saw the Segway in action, played with the mini-basketball hoop, etc (we really do work, honest). By the time we knew it it was around 2:30 and thoughts of having Mom come and get her didn't make sense. So, she just stayed with me the rest of the day. I had a couple other meetings in the afternoon, and Maddie was a trooper. She just hung out in my office and did her thing.



I was super proud of Maddie and how good she was. I think she really enjoyed it...and so did Dad!

Happy Birthday Steph

For those who don't know, today, March 7th, is Steph's Birthday. Here was our day:

I took the day "off" and stayed at home. This allowed me to take Maddie to school, get coffee and breakfast for the birthday girl, and hang out. Around 11:30, Julia took Steph out for a nice lunch at the Dahlia Lounge while I stayed at home with Kenzie. After a quick grocery store visit to pickup some Tulips for Steph, Kenzie konked out for a little nap. Steph got back from lunch in time for us to buzz up and pick up Maddie from school then we headed out to a bead store. Steph has been spending time on some creative bead bracelet creations. We made it home in time to change and get up to Angelina's for Steph's birthday dinner. It was a little crazy as the kids were starting to run out of steam. Luckily there wasnt a lot of other people in the resturant as Maddie and KK had the run of the place. Our last stop was for a Shamrock shake at McDonalds and a quick drive around the beach.

We had a busy day, and I think Steph enjoyed herself. Happy Birthday!!

Off to a good start to the week

While we were driving to radiation the other day, Amy and I got to talking about T-shirt slogans that could adequately sum up our current cancer-battling moment. My wife has a plethora of riffs on a singular theme: even though she has cancer, she is not defined by her cancer. To wit: “I AM NOT cancer girl!” and “I AM NOT MY TUMOR!” Amy is a font of creativity; she came up with so many possibilities. Her husband, on the other hand, came up with one idea, fell in love with it, and like a dog with a bone, refused to let it go: “Cancer is a bitch… AND I’M SLAPPING IT DOWN!”

I’m telling you, someone’s going make a mint hawking that one at Cancer Walks!

(Ahem.)

Anyway, as you can tell… we’re in pretty good spirits right now. Much better than last week—the first week of chemo and radiation—when Amy was beset by seizures and persistent queasiness that basically kept her in bed for three days with a vomit bucket to keep her company. It’s hard to say what really made her so nauseous. It could have been a reaction to the chemo. Or it could have been some kind of stomach bug; it seems that the chemo really saps your immune system and makes you more vulnerable to crud and stuff. But the good news is that by Friday of last week, Amy was feeling better and moving about and eating something more than crackers and water. To be clear, the chemo can still leave her feeling a little queasy… but right now, she’s taking it in stride.

The past several days have been filled with blessings. On Saturday, we went to the beach and had some pictures taken by our good friend and professional photographer, Dane Sanders. It was a beautiful afternoon and the photos Dane took are even more beautiful; we’ve included one with this Blog.

The photos of Ben with his Mom really touched me. As I’ve shared earlier, Ben has been showing signs of struggling emotionally amid all of this. But seeing him snuggle next to his mother for these photos—well, he looked very happy, very content, more so than I’ve seen him in recent weeks. I could be projecting all of this, of course. But that was my perception. It was wonderful, bonding experience for our family, and we’re grateful to Dane for his generosity, creativity, and love.

On Sunday, my Mom arrived for a week, and we are blessed by her presence, as well as her willingness to help with the kids and the house. Special thanks to Dad for once again sparing her for a spell. By having her here, I will be able to return to work for a couple days this week—I’ll be visiting the set of the TV show “Heroes” for a story I’ll be writing later this spring.

Of course, I don’t have to travel anywhere to meet a hero, since I’m living with one. I am deeply moved and inspired by Amy’s strength, perseverance, grace, vulnerability and honesty in the course of this experience. I found myself thinking today, as we walked the corridors of the cancer center at Cedar Sinai, that I really need to be taking notes. Because one day, something like this will happen to me, too. It might be cancer, might be something else. Whatever it is, it is bound to be unexpected and certain to be deeply unsettling, and . my hope is that I will be able to handle it like Amy is handling her illness. My prayer is that her example will leave a mark on me and inspire me to courage when mortality decides to whack me upside the head.

But to be clear, even heroes need prayer. Voluminous amounts of sustained, unceasing prayer. So keep them coming. Pray that the cancer in her brain will be taken away from her. Pray that she will be given at least three more decades of life. AT LEAST. Pray that her anti-nausea medicines will take hold and keep the quease at bay. Pray that the seizures will go away. Pray for our kids. Pray for me.

We are grateful to God for all of you. Thank you for your love and support—for the meals and the rides, for mowing our lawn and cleaning our house, for your love and your hugs. We are walking a tightrope—and you have been and continue to be our net. That we know that you will be there to catch us when we fall has given us the boldness to walk this stretch of life with guts and good humor. Thank you for helping Amy to heal. Thank you… for slapping this thing down. Much love,Jeff and Amy

Father - Daughter Dance

On one hand the weekend seemed very mellow and laid back, but at the same time busy busy. On Saturday, after a swimming birthday party, Maddie and I went to the Hope Lutheran "Spring Fling." This was the re-scheduled "Winter Ball" that was cancelled a few weeks ago by snow. We just learned about this re-scheduled on Tuesday, but we don't need to go there.

The evening was fun. We started out with aspirations of hitting Elliot Bay Brewery for a casual dinner. However, upon driving by and seeing the line out the door we had to improvise. Given that it was close to 6pm (the dance started at 6:30pm) my first thought was something like Luna Park, but then Steph recommended Angelina. Maddie was up for that since it sounded like Angelina Ballerina :-) We got in really quick, and had a great dinner. Maddie colored some pictures, had some bread, and gobbled down here cheese pizza...no sauce. I had my staple, Chicken Parmesan. FLASHBACK: I used to work at Angelina's back in high school and got hooked on Chicken Parmesan.

From Dinner we made a quick stop at the grocery store for some gum...couldn't go to the dance with garlic breath. When we got to the dance, things were jammin'. The mini-stereo system was busting out the tunes, kids were running everywhere and there was a contingent of dads hanging out. As the night went on, the music got better (kinda), we had a few "dances", a few glasses of Apple Juice, and of course a cookie or two. Once the dance was over, we wandered over to Husky's for a scoop of ice cream. I knew that Maddie was tired when she could only get through 1/2 of her Root Beer ice cream...usually she gobbles that down.

So, our first ever "Father-Daughter" event was in the books. We had a great time!