September 28, 2007

A Bump In The Road

Hi Everyone,

Well, we hit a little bump in the road yesterday. During our weekly meeting with Dr. Watson after radiation on Wednesday, Evan told him that he was having consistent pain in his right leg. Dr. Watson said that, among other things, it could be a blood clot. So he scheduled an appointment for Evan to have an ultrasound on his legs. Evan had the ultrasound done yesterday (Thursday) at 5:00 pm. His left leg tested fine and clear, but they found a significant clot in Evan’s right leg, from just above the knee down to his ankle.

They admitted him to the hospital, ran more tests to check for any additional clots in his lungs, and started him on blood thinners. We got the results back from the additional tests late last night, and they found two more clots (small ones) in his left lung. At the moment I’m not completely clear what all the implications of this are, except that he will definitely be on blood thinners from now on. He’ll be in the hospital at least until Monday while they adjust and manage the medication, and get his blood down to a safe level.

Thankfully we had the ultrasound done here in the American Fork Hospital, so that’s where they admitted him. I’ll be able to come home to sleep at night, it will be easy for the kids to see him whenever they want, and he’s got his own room – so it won’t be too bad. Plus, my Mom and Dad are here so they keep things running when I’m not at home.

In other news, Evan’s hair finally started falling out, in big clumps, last Sunday. By Wednesday he looked pretty mangy, so Wednesday night we had a little head-shaving party. I can report that Evan has a perfectly shaped head, and looks great! The Decadron that he’s taking, even though they’ve lowered the dose, is still causing a lot of swelling in his face and head so we were having a hard time finding any baseball hats that were big enough to fit him, but Evan’s good friend Harold surprised him with a Boston Red Sox hat on Wednesday night, and so far that one fits the best! Thanks Harold!

Anyway, that’s the latest – we’ll keep you posted! Thanks for your prayers!

Love,
Margot

September 21, 2007

2 Weeks Down, 4 To Go!

Hi Everybody,

Sorry it’s been a while since my last update – there just aren’t enough hours in the day (or energy cells in my body)! By the time I get to a point in the day where I could sit down and write a letter (usually late at night) I’m just too exhausted to think and type at the same time. Anyway, thanks for being patient and for keeping us in your thoughts and prayers.

Evan had his 10th radiation treatment yesterday (Wednesday). So that’s 2 weeks down and 4 weeks to go. Honestly, at the moment, that sounds like an eternity to both of us. Maybe next week it will feel a little better – then he can say he’s half way done (with radiation anyway).

The combination of radiation and chemo is starting to take its toll on Evan. However, we’ve been told it could get a lot worse, so we’re trying to be grateful for all the problems he hasn’t had yet. He hasn’t started losing his hair yet. He hasn’t had problems with nausea. His throat, mouth, & taste buds have only been slightly affected. His skin hasn’t felt burned or irritated. And his speech and short-term memory has actually improved (I’m especially grateful for that!).

What he does feel is tired, weak, and his muscles (especially his arms and legs) just ache a lot. He basically feels like he has a bad case of the flu right now (minus the runny nose).

The weakness and fatigue are caused by the chemo & radiation, but the muscle aches are actually caused by the anti-inflammatory/steroid he’s taking, called Decadron. He’s been taking a higher dose of the Decadron ever since the biopsy, to reduce the swelling in his brain. Unfortunately, it comes with lots of nasty side-effects including significant damage to muscle tissue. So, they’ve been gradually reducing his dose over the last two weeks because of the damage it can cause. However, as they lower the dose he may start having problems with speech and short-term memory loss again. So, it’s a catch 22 – we can’t live with it and we can’t live without it.

In addition to the Decadron, Evan has about 5 other medications he takes to minimize the side-effects of the chemo medication. Antibiotics, anti-nausea pills, stuff to fight the “thrush” or yeast infections in his mouth and throat, etc. It’s really crazy to see all the stuff he has to take. He has the mother of all pill boxes, I can tell you that. One cute thing about it though – Lindsay announced last week that from now on she wanted to be Daddy’s “Medicine Girl,” as she calls it. So, four times a day (if she’s home) she takes Evan his water glass and pills. She is very proud of this responsibility. It’s just about the cutest thing ever! I wonder if we have a future nurse on our hands.

I wanted to tell you about several other little “silver-lining” events, like that, that have happened over the last couple weeks also.

Yesterday we received a thick envelope from our darling niece, Emma. Emma is the youngest daughter of Evan’s sister, Joy, and her husband Tim. They live in North Carolina. A few weeks ago at school, Emma told her teacher that she was worried about her Uncle Evan and explained the situation. Well, Emma’s sweet teacher decided to have all the children in Emma’s class make get-well cards for Evan. We had the most wonderful time opening and reading those cards yesterday. We just all sat around looking at them, saying “look at this one, look at this one.” They were absolutely delightful. We’re going to make a special scrapbook of all those cards. Thank you so much Emma!!!!!

Evan’s co-workers at BYU brought him a very cool “get-well-bear” from the Build-A-Bear Workshop. It was delivered by Evan’s wonderful boss and his sweet wife. It arrived wearing a BYU Cougars T-shirt, blue jeans, some very snazzy tennis shoes, and the coolest pair of sunglasses you’ve ever seen. It also came equipped with a little bear-sized football, of course! That has become a highly coveted item in our house. Even though it still belongs to Evan, Evan has graciously agreed to let the kids take turns having it sit in their bedrooms from day to day. Thanks to our friends in Financial Services at BYU – and especially those who have taken on extra work assignments to cover Evan’s responsibilities there. We just can’t thank you enough!

Our dear friend and neighbor organized a small army of men from our ward to take turns driving Evan to radiation twice a week for me. It has been such a blessing I can’t begin to express my gratitude. Not only has it eased the burden for me of driving time and gasoline expense, it has been the best thing ever for Evan. It’s been so good for him to have some interaction with other people, especially other men. It’s been so good! I think one of the hardest things for him has been not going to work and not having that interaction with co-workers, and other people in general, that was such a huge part of his life before. From the bottom of my heart, I thank you guys!

We have received so many other acts of kindness I can’t begin to list them all – phone calls, e-mails, visits, bread, babysitting, dinners, get well cards, gift certificates, lunches and movies with friends, and on and on. We have been so touched by the out-pouring of love and support. Thank you to each and every one of you! Also, a special thank you to my Mom. She has been here for two weeks already, and is planning to stay for another two or three. She’s going to need a serious vacation after this. Thanks Mom!!!

Well, hopefully that caught you up to speed a little bit. We send you all our love and gratitude!

Love,
Margot

September 9, 2007

Treatment Begins

Dear Family & Friends,

Evan started his radiation treatment on Thursday. We thought it would start on Wednesday, but it turned out that they needed to double check the alignment points for the radiation beams and make sure everything lined up the way they wanted it to. So they spent his Wednesday appointment doing that.

He had his first official treatment on Thursday and the second one on Friday. He hasn’t felt any side-effects yet, which has been a relief, but they told us he might not feel any significant changes until later in the second week.

As for the chemotherapy, he starts that on Monday. Again, we thought he would start chemotherapy on the same day as the radiation, but our insurance company requires that we order the drug through a specialty pharmacy that only delivers through the mail. Anyway, by the time we jumped through all their hoops and waited for them to process the order, Monday was the earliest delivery date. We’re learning that nothing is ever as simple and straight-forward as you think it will be.

So this coming week will be the first full week of both radiation and chemotherapy. For the next 6 weeks he’ll have radiation 5 days a week (Monday thru Friday), and take the chemo every day (7 days a week). It certainly won’t be fun, but they’ve given him lots of other medications to counter the potential side-effects so hopefully that will keep them to a minimum. We’re just crossing our fingers and hoping that the next six weeks go by really fast.

The most interesting thing about this past week has been sitting in the waiting room with all the other patients waiting for their radiation treatments. It’s a humbling experience to realize how many other people are going through the same thing we are. We’ve seen teenagers, elderly people, men and women of all ages and walks of life. They’re all there with little or no hair, in various stages of health, and various stages of life. I sit and wonder what each of their stories might be. Somehow it’s comforting to see them - to know that we aren’t alone, to know that we haven’t been singled out for this ordeal, to know that this happens to hundreds of people just like us everyday.

In the back, near the treatment rooms, they have a big brass bell attached to the wall. On your last day of radiation you get to ring that bell. Every day that we’ve been there, I’ve heard at least one person ring the bell. I’ve quickly grown to love the sound of that bell. It tells me that somebody else made it through this and we will too.

Thanks for all your prayers – we need every one of them!

All my love,
Margot