New Plan of Attack!!

So in the words of Emeril: We're KICKING IT UP A NOTCH!

So what does that mean? Well, Daddy's doctor didn't like what he saw on this month's MRI....it basically showed that the little pea-size satellite tumor that couldn't be removed in surgery appears to be growing....just a bit, but any growth is bad. So Temodar is out. New treatment in....

The good news is that Daddy is getting a very new and promising drug protocol. Well, the drugs themselves are not new, but the combo and the use for brain tumors is. Duke University has been doing some trials on this treatment, and results have proven promising. So promising that this has become an accepted "next stage" treatment after regrowth occurs during treatment with Temodar, even though the FDA hasn't approved the drugs for brain cancer treatment. We're very thankful that there wasn't even a QUESTION whether or not Daddy gets this treatment. I know from my internet research that quite a few people have problems with their insurance over this.

Now's the bad news: This is not an oral medication like Temodar. He's taking two different drugs, Avastin and CPt-11. Both are infusions. Which meant Daddy has to spend three hours every other week getting this done. He had a port installed in his upper chest/front of shoulder area. He's not really thrilled with it. His first treatment was today, Mary Anne said he watched a John Wayne movie during treatment. Tomorrow and the next day will bring the side affects, hopefully not too bad. He's used to feeling tired from chemo, but we're hoping he won't have too much of the other stuff, like nausea and intestinal distress.

But enough about that! Let's keep a good thought!

Daddy and Mary Anne and I spent an interesting day together last weekend (the 8th) attending a Brain Tumor Workshop here in town. It was a full day of treatment updates, caregiving tips, nutrition, stress managment, and inspiring testimonials of fighter/survivors. The very best part was at the end. We almost missed it, we were all really tired and overloaded with information, ready to go home. The presentations were running long, and Mary Anne was keen on getting home and I have to admit my tailbone was killing me because of the chairs. But I knew the last was going to be important for all of us, so I said we needed to hang in there. We were all so very glad we did.

When we went back into the room after the last break, we got seats up front. We see a microphone and a guitar. A tall thin guy walks in with a tiedye do-rag on and sits down and picks up the guitar. I didn't look at daddy's face, but I knew he was thinking "what the heck?".

He started picking riffs on his guitar, talking at the same time, using the guitar almost as an extension of his own voice. He talked about being diagnosed ELEVEN YEARS AGO with the same type of brain tumor Daddy (and many of the other folks there) has. As he told his story, he went through every stage of grief and ultimately his new outlook on life....all punctuated by music, songs he had written to inspire himself and others. The highlight for me was what he called a "song with no music". He said "some people might just want to call it a poem" but "I like to call it a song with no music". He read it aloud, not using his guitar this time, but just using his voice to create the mood of the "song". It was the words that hit me though. I felt like he had reached right into Daddy's brain and extracted every thought and feeling he didn't know how to say. I'm pretty sure Daddy felt the same way, if the look on his face was any indication.

I won't post the words, because they are copyrighted. But I will send you over here to read them at David M. Bailey's web site. You can listen to a few of his songs at the web site, and read a little bit about what he's all about. He's an amazing performer, Daddy's calls his show "intimate", which is exactly the feel Mr. Bailey is going for. If you ever have an opportunity to see him, you need to go!

Thank you for coming back to check on Wes' progress. Please drop a line to his e-mail if you wish, let him know how you are!

Is it spring yet???

January has to be one of the dreariest months of the year, the holidays are over, true winter weather hits. At least our version of "winter". Most of us (especially those of us who live in California) go a little stir-crazy when we can't get outside and do things we enjoy. Gardening and dog walking are two of Daddy's favorite activities, but he's been severely limited by yucky cold and rainy weather. Whever it's dry and the sun is out a bit, Daddy gets out as much as possible with the doggies.

January was round two of the 5-day on 23-day off chemo treatment, and this next week he will enter round three of the 5-days on. Before each treatment round he gets blood work done to be sure his counts are strong enough. His numbers are very good, and the effects of the particular chemo drug (Temodar) he is taking are being tolerated very well. From the research I've been doing on the internet, people either tolerate Temodar or they don't. And being able to tolerate the drug is a strong indicator of successful treatment. I'm really hoping that's the case for Daddy, of course.

The month hasn't been all dreary, we had this to look forward to:

Yes, Ladies and Gents, That's Joe! And of course, his lovely bride Erica. When they were planning the wedding they said they were hoping for rain, because it would look so pretty through the windows in the chapel. See the pretty rain? I didn't think so. Okay, maybe a little bit. It was a little bit pretty. But mostly wet. And COLD. And did I mention wet?

Nobody really minded, we had a wonderful time, and it was really nice meeting Erica's family. Erica has a great big warm heart (just like Joe) which is reflected in the rest of her family. Although we almost had a SMACKDOWN between the "Aunt Terris" (Not really). Get this: Erica's Aunt Terri has the same birthday that I do. Not just the date, but THE YEAR. I mean, like twins or something. I knew we were going to get along when she immediately asked me the hour of my birth.....and since she was born two hours ahead of me, she thought she was "Aunt Terri One". But I had been giving the dilemna a great deal of thought, so I was ready with my answer than since Joe is older than Erica, I was Joe's Aunt Terri before she was Erica's Aunt Terri so I'm Aunt Terri One. Hard to argue that. HA!

So, back to Daddy......here's a good shot of him with Joe:

Our handsome gents

And of course another of Joe with Erica:

We have so much to be thankful for, Daddy's feeling good is the biggest one. It makes all of these occasions that much sweeter, and makes all of us aware of how much we have to be grateful for. I've made a few online aquaintances with other people who's family members are fighting the same or similar fight that Daddy is. There are many who have lived for YEARS (one of them eleven!) using the same treatments that Daddy is getting.

On the other hand, and who knows why, there are others who aren't. Who are getting the very same treatment, the same radiation, the same drugs, as Daddy. And they aren't doing well. Their blood counts dive, they have seizures, they can't maintain enough nutrition. I don't know why this is, but for whatever reason this happens.

So, in closing I have a request. All of you that are praying for Daddy.....and I know there are a lot.....please keep my friend Melissa and her mother Lorraine in your prayers. Lorraine was diagnosed with the same GBM a month after Daddy was. Three months after the birth of her first grandchild (Melissa's baby). And she's not doing well. She wasn't able to finish her radiation due to severe side effects, and her strength isn't building back the way it should.

Thanks everybody, for checking back with us to see how Daddy is doing! I hope this finds everyone happy and healthy. Drop Daddy a line at his e-mail (he does read them!). He still isn't much for writing back, but who knows? The way he's heating up the computer playing solitare lately, he might decide to try and actually TYPE WORDS. HA HA.

Sun Shiny Christmas

Well, while much of our nation is suffering from horrible holiday storms, we were favored with one of the nicest days in months for Christmas Eve. I'm thankful, since we had many car-fulls of family traveling to our home for our traditonal holiday brunch.

We were even able to go outside for pictures, and you can see by the light in the pictures that the sun was very clear and bright.

Here's Mom and Daddy on the porch. Daddy just had a week of chemo, which will happen every month. He's strong and in good spirits. He's still eating well, but not gaining much weight. I think that's because he's keeping busy with the yard and dogs. He was able to walk just fine into the arena to see Granddaughter Julie graduate from college on Saturday. He used the walker for safety (crowds, ramps, etc). Here is a picture of all of us on Saturday: (ignore Meaghanne's face, you know there's one in every family, isn't there??)

Having the family together this Christmas season was very important to us, especially since our newest member Kevin (Grandson-in-law) came down on his leave for Julie's graduation and to celebrate Christmas. He's scheduled to go back to Iraq (again!) for another 15 months this coming April. So it's going to be a while before we see him again. Here's the whole gang out on the porch for a picture:

Merry Christmas to our family and friends!

Greedy Thankfulness - or Thankfully Greedy?

These last few weeks we have all been recognizing how fortunate we are. We spent a nice Thanksgiving afternoon together enjoying a fantastic meal cooked primarily by 16-year old Meaghanne. We offered up a blessing that included Mom recognizing that this year, more than any other year, we have much to be thankful for. The support of each other, Daddy's strength in fighting cancer, the doctors who have been so awesome. The moment was very emotional, I had much I wanted to say but my throat closed up into a ball and I couldn't get words out. All I could do was squeeze my dad's hand and look at Mary Anne, hoping she could see what was in my heart through my eyes.

We do have much to be thankful for, but is it okay to want more? Daddy has been feeling so good, has been able to do some (but not all) of the things he wants to do, is it greedy to hope that the cancer has decided to take a rest in response to the overwhelming onslaught of medical treatment and Daddy's will to get better? It was hard not to feel a little "conditional" thankfulness, "conditional" on the results of his MRI that he had last week. This is what tells us how the tumor has responded. I think we all felt the stress of not knowing hanging over our head, as much as we tried to ignore it.

Daddy went in today to meet with the doctor who performed his surgery, the one who diagnosed his cancer and met with the entire family to answer our questions on that awful day in August. Mary Anne, Joe, and Julie were there with Daddy today too. The results of the MRI were incredibly good....the tumor that was removed has not grown back. And the part that the surgeon was unable to remove is shrinking in response to the treatments. It appears that Daddy has been selected to be on the "long side" of the averages. He will take a week every month of chemo to keep the tumor cells from growing, hopefully for a good long time!

The doctor told him to go home and live life.

Cast of Characters

So you've all read about people in Wes' life, some you may know, other you don't have a clue who they are. Well, this weekend we had a happy occasion that was a great opportunity to get a picture of everyone. And well, here it is:

L-R Top Row: Son-in-law Bob, Daughter Terri, Grandson Joe, Granddaughter Meaghanne, Granddaughter Julie, NEW Grandson-in-law Kevin, Best Man Kevin's Brother Bill, Grandson Michael, Daughter Mary Anne L-R Front Row: Soon-to-be Granddaughter-in-law Erica, Wife Wanda, Wes, Granddaughter Nichole.

The occasion was Granddaughter Julie's wedding. It was a truly special event, not one of those flashy wedding extravaganzas that make you think "I wonder how long it's going to take them to pay this thing off" but more like "This is REAL, this is WARM, this is what it's ALL ABOUT!!"

Wes has had quite a few opportunities to get out and play lately. Here's a picture of his cheering section at the last club meeting (minus me, I took the picture):

Adrian, Michael, Mary Anne

This clip was taken two days after the last of his six-week treatment. We were told that he would need a couple of weeks to recover and feel good after the final eight days of radiation, because those were the "final attack" days on the areas of his brain the surgeon couldn't safely get to. I guess somebody forgot to tell Daddy that, he took one day.

What do YOU do???

My sister Mary Anne and I have come to a realization that no matter what the circumstances, if you're doing what you love to do then life is good. No matter what. We had a good day on Sunday, we took Daddy to a local Jazz Society meeting that was featuring the band he plays with. He's missed a few gigs lately due to surgery and recovery, so everyone was so happy to see him and he was so happy to be there.

We weren't sure what to expect, it takes quite a bit of stamina for a healthy person to play three piano sets in five hours. Not to mention that he brought his bass trumpet to play during the jam sessions.....we really tried to get him to sit with us between sets, but we just couldn't hold him back...he was having a great time! His response to us, when we encouraged him to "rest up" between sets was: "I can rest on the WAY HOME". HA HA. What can we say?? "It's what he does."

Now we enter week five of the six weeks of initial treatment. His weekly blood work looks very good, he's tolerating the drugs and radiation fairly well. He's still experiencing fatigue (although you wouldn't have known it on Sunday!) but he's still got a fairly good appetite. Mary Anne has started him on smoothies in the morning, she sneaks in all kinds of good stuff like yogurt, psyllium husk, flax, protein powder and fresh fruit. I think they appeal to his need to "eat light".

Here's a little clip of Daddy playing with the group:

Wes "SHINES" at Jazz Sunday.

As you can see, he's marvelous. And of course all the other guys are too....unfortunately my little video clip isn't the best quality, the microphone doesn't do the sound of the band justice. But you get the idea!

Treatment Update

Wes is on week three of his six-week radiation and chemo regimen. We know that effects will be cumulative, but the fact that he has VERY LITTLE DISCOMFORT so far from either treatment has been very encouraging. His blood counts are, according to his doctor, "right where they need to be" and he says that "someone is doing something right".

Daddy reports a noticeable amount of muscle weakness, but his reaction to that is to walk more....which is exactly right! He's working hard to stay strong, but also taking the necessary rest breaks. He's got a big day today, he's visiting his old pals in Jackson for a jam session for a few hours. Mary Anne made a turkey meatloaf for dinner the other night, and Daddy though she put too much pepper in it. Mary Anne said she didn't put any pepper in it, then we realized that maybe he's experiencing one of the radiation side effects, which makes his food taste "off".

The end of this week marks the 1/2 way point through this first course of treatment. We're all hoping that his current level of stamina remains as high as possible. Thanks to all of you for your cards, phone calls, and e-mails. I really think they make a huge difference!