The Misadventures of Mike

Finally! An Update!

2009-02-22T01:40:00.006-05:00

I realize I’ve been terribly slack about not updating the blog. I’m sorry! It takes a lot longer to write these posts than you would think, and time is something that I don’t have a whole lot of extra of these days. I have looked around the aisles of Publix, but I can’t seem to find it bottled on a shelf anywhere. If you happen to find some on ebay, how ‘bout send me a message and let me know. Isn’t it AT&T that has the commercial where the kids are throwing away their unused cell phone minutes? Maybe I can get my hands on some of those and be in good shape! Life will be much easier for me once school is out for the summer, but there’s quite a bit of time before that happens. In the mean time I’m having to complete a project for my grad class as well as do a bunch of make up work for the time I missed while being out with Mike last year.

I just found out a couple of weeks ago that Richland School District Two dedicated the Chick-fil-A Classic basketball tournament in memory of Mike. They had a page in the program with the dedication and gave me a framed copy. I showed it to Ava, and she said “Oooo!” She proceeded to name everyone in the pictures. There is one of me and Mike as well as him and the girls. For those of you who don’t know, the basketball tournament is a pretty big one. It’s held at Richland Northeast and is played the week before Christmas every year. Teams from several different states participate; in the past, they’ve even had a team travel from the Bahamas. As athletic director, Mike always had to work the tournament, which required a lot hours. I thought it was very nice of the district to dedicate the 2008 tournament in his memory.

And to those of you who sent in a contribution for Mike’s memorial at school—don’t think it’s being ignored! They are working on having a cavalier statue made in his memory. The original idea was to have it in the courtyard, but they have since had a better idea. The school is going to build an auxiliary gym and have a corridor that connects it to the current gym. The new plan is to place the cavalier in the corridor. As athletic director, Mike’s office was in the gym and he spent a lot of time there, so this is really a better spot for it. Having the statue erected will take a little longer since we have to wait on the new gym to be built, but I think it will be the perfect place for it. On a sad note for those of you who don’t know, Richland Northeast has lost two other faculty members this year: Terry McCoy, who was the Student Activities Director, passed away in December, and Tom Buckland, a social studies teacher, passed away just last week. Please keep the families of these gentlemen in your prayers.

The girls are doing well. We went through another bout of the pink eye. I swear, I think that ever since Ava contracted it back in the fall, our house has just been infected with the funk! Savannah is 17 months now, and is doing quite well with her talking. She says a bunch of words independently, and she’ll even speak in two or three word sentences. She loves to put the phone (or remote control) to her ear and say, “Hello?” Mike would have been rather amazed at the difference in development between Savannah and Ava. Ava didn’t even speak ten words when she was two, nor could she correctly pronounce her own name until she was two and a half. Savannah, on the other hand, will say Ava’s name as well as repeat just about anything that comes out of your mouth. So, if you’re ever around the girls, definitely be careful of what you say! You’ve also got to keep an eye on Savannah, or she’ll get into something before you can turn around. Whatever you do, make sure bathroom doors are closed; she loves to stick a toothbrush or toothpaste in the toilet. Whenever Savannah’s being trouble and I call her name, Ava asks, “What are we going to do with her?”

Last month my parents celebrated their 50th wedding anniversary! We all went to the beach for the weekend to celebrate. Boy, was it ever cold! The pipes froze, so we didn’t have water for a couple of hours our first night there. On our second night we all went out to dinner then went to a “Tribute to Elvis” show at the Alabama Theater. My oldest sister and her husband kept the girls while we went to the show, so that they could decorate the house for a mini party when we returned. We had balloons and golden anniversary décor all around as well as cake and punch. It was a good time for all. When we came home on Monday night, school was canceled for the next day because snow was in the forecast. Since I had all of my stuff, I decided to stay at my parents’ house because I knew that I would need help keeping up with both of the girls if I let them out to play in the snow. (Okay, maybe—just maybe—the fact that we didn’t get home until almost 8:00 and The Bachelor was coming on TV played a small role in me spending the night. I mean, if you’re a fan of Reality Steve’s blog, you have to watch so you can enjoy his witty banter the next day.) Of course, the snow was typical of that in the Midlands of South Carolina—everything gets closed down for a dusting of white powder. It didn’t stick to the ground, but some did collect on the cars. My mother and I took the girls out to play with the snow that had gathered there. Ava liked throwing snowballs, and Savannah enjoyed eating it. Not like that’s surprising—the girl likes to eat. We made a mini snowman, though micro snowman is probably a more accurate term.

For some time I’ve been thinking about creating a new blog to update everyone about how the girls and I are doing. Since the majority of the posts are about us and what we’ve been up to, writing about our antics doesn’t really fit the purpose of what “The Misadventures of Mike” was created for. With that being said (or written, technically), this will be last time I post on this particular blog. I appreciate all of you who have been reading since it was started last year and for checking back regularly, particularly since it’s been two months since I’ve posted anything. (Some people are just so slack!) I also want to thank you again for your many prayers for me and the girls. I’m certain that they have made a difference for us. If you want to keep up with me and the girls, check out our new blog at http://starnesgirls.blogspot.com/. I actually created it a few weeks ago, but haven’t had the time to write anything on it. I did post some pictures, so if you want to check out a few pics of the girls in the big blizzard we had, just click on the link to check it out.

Merry Christmas and Happy New Year!

2008-12-26T22:08:00.008-05:00

I took the girls to Santa Claus the other week. Ava was so excited! We had actually gone to the mall on a Saturday afternoon, but I had to hit Belk before their sale ended at 1:00, and by the time we left, the line to Kris Kringle had been blocked off. I guess Santa had to go feed Rudolph some lunch or something, so we didn’t get a picture. Anyway, I took them back to the mall a few days later. The line wasn’t too bad, and they both behaved while we waited, which is one of the most important factors for me. The good behavior ended for Savannah when I tried to hand her over to Santa. She wasn’t too keen on that idea and started screaming her head off. Instead of making St. Nick hold her for a picture that would haunt her for the rest of her life, I decided just to let Ava get a picture by herself so we could have decent memory of the event. Plus, I figured the employees there aren’t paid enough to have to tolerate screaming children. Neither am I, for that matter.

In the words of Professor Hinkle, December has been busy, busy, busy. (Hinkle is from Frosty the Snowman…where’s your inner child?) Getting ready for Christmas was no easy task this year—not that it is for anybody any year—but I think I got everything done. At least I don’t realize if I messed something up terribly. Santa is going to need to make a list of what he gets for the girls next year so he doesn’t overdo things like he did this year. I don’t have a lot of storage space in my house, so I had to hide things here and there. I’m certain I’ll find stuff three months from now that was intended for Christmas. In fact, yesterday I realized there were two small things I forgot to give the girls, but I have no idea where I put them. I’m sure they’ll make lovely birthday presents or gifts for Christmas next year. I’m not real big on buying the girls toys unless it’s for their birthdays or Christmas.

My family and I had our annual progressive dinner the Sunday before Christmas. We’ve been doing this for about eleven years or so now, and it really is a lot of fun. I have four sisters, and we go to each others’ houses for a different portion of the meal: appetizers, soup, salad, main course, and dessert. We open gifts at each house, so everyone gets a present at each stop. I had appetizers this year, and those of you who know anything about me know that my culinary skills are limited to pancakes, brownies, and anything that can be tossed in the microwave. Mike was the cook in the house, so let’s just say the stove and oven don’t have to worry about getting worn out any time soon. The oven, however, did get plenty of use for the festivities warming up a variety of delicacies that can be found in your local grocer’s freezer. The girls got enough toys from all of the stops that I think Santa could have skipped our house this year. I don’t know where we’re going to put all of it…if anyone wants to volunteer to come build an extra room onto our house, feel free. A shed in the backyard will be fine by me.

The girls and I stayed at our house Christmas Eve. Ava made some sugar cookies with her Aunt Cindy and we left one out for Santa that night. There were a gracious plenty cookies, but Ava only wanted to leave one for St. Nick. The girls actually went to bed around 9:15 that night. I was worried about there being too much anticipation on Ava’s end—I remember has a child staying up half the night waiting for Santa to come. When Ava woke up Christmas morning, she lounged in bed until Savannah woke up. Even then, she wasn’t ready to run to see what Santa brought. I asked her if she thought Santa had come, and she said, “No.” I told her I thought he did and took them both into the living room. A short clip of them playing with their toys shortly after they saw them is below. I’ve also included some pictures of them playing as well. We went to my parents’ house around 2:00 where we stayed the rest of the day. Ava got a Black and Decker work bench and a girly train while Savannah got a doll house and a very nice rocking chair to match her room. We all got a family membership to EdVenture for one year, so we can go as often as we'd like over the next 365 days!

Santa brought Ava a bonus present that we weren’t expecting—pink eye. That was lots of fun. Luckily, my mother had the eye drops from when Ava had it a couple of months ago, so it’s pretty much cleared up now. I suspect Savannah will have it before long. I think I’m going to go ahead and put some drops in my eyes as a preventative measure. And let me tell you I am not a fan of the eye drops. The first time I ever put them in my eyes was when I got pink eye from Ava in October. I swear I don’t know how people can use Visine or put in contacts on a regular basis.

Thank you all for continuing to check on us through the blog and your many prayers. Christmas, of course, wasn’t the same, but it is what it is. As Mike used to tell me, you control the things you can control and deal with the things you can’t. I hope you all had a wonderful Christmas and have a blessed new year.

Give Thanks!

2008-11-26T22:43:00.002-05:00

While last year at this time I certainly never in my wildest dreams anticipated that I would be spending this holiday season husbandless, it is the season to give thanks, so I think it’s much healthier to count my blessings rather than roll around in self-pity. I’m sure I could make a great case for why this will be the worst Thanksgiving and Christmas ever, but what good is that going to do? None, that’s what. The bottom line is there’s always someone out there who has it worse than you do, so be grateful for what you do have. Here’s what I’m thankful for this year:
*I got to be married to Mike for seven years and learn lots from him.
*Mike didn’t pass away suddenly and unexpectedly, so I had a few months to prepare myself for the inevitable.
*I was approved for the sick-leave bank at work, so I was able to spend every day with Mike that he was in the hospital.
*Mike was very organized, so that helped in getting lots of paperwork junk taken care of this year. (And there has been a gracious plenty of it.)
*I have two wonderful girls.
*I have parents who help me out tremendously with the girls. (Small children are small children. It doesn’t matter how you slice it—they’re a lot of work! If you’ve never had kids, borrow someone’s for a weekend, and you’ll quickly discover what I’m talking about here.)
*My family and friends.
*My faith in knowing that I will get to see Mike again.

This evening Ava set up everything for a tea party at the dining room table. She had four place settings. She told me she set one for Daddy—he was still sick up in the sky, but maybe would feel better and come down. When I tried to explain to her that that wasn’t going to be happening, she told me to “Stop it.” That’s her new thing to say when you tell her something she doesn’t want to hear. Now, when I asked her what she was thankful for, I didn’t even end up on the list. What’s at the top this year? Sausage. And eggs. I don’t even like either one of those things! When I asked her “What about people?” She said she was thankful for her people and started rattling off the names of her play toy people. Good thing I don’t suffer from low self-esteem.

I was fortunate to have Veteran’s Day off from work a couple of weeks ago. The girls and I decided to have a big day together. We started off at Edventure. For those of you who aren’t from around here, it’s a big children’s museum. If you live close by, I highly recommend making the trek for a visit. We went once over the summer; I’m not big on crowds, so I don’t like to go to places like that on weekends when there are a bunch of people there. Particularly when there are a bunch of children present—they can be ruthless, which makes reinforcing manners a bit challenging. We had lunch from the “virtual” McDonald’s on the bottom floor. (Read: you call in the order and they bring it to you from across the street. Do note that if you order a happy meal, you’ll be not so happy to discover that the drink is not included and you end up paying an extra buck fifty for it. Lesson: read the fine print AND ask for an exact interpretation.) I’ve included a some pics of our Edventure adventures at the bottom of this post. There would be more, but somebody forgot to charge the camera battery, so we didn’t get pictures of everything.

After exploring the museum we went to every girl’s favorite place: the mall. The main reason Ava likes to go to the mall is we have a rule that we always get a cookie when we go to the mall. A few months ago Columbiana Centre got sneaky on me. They put about six little rides right at the spot where the cookie store is. I am fortunate that Ava doesn’t care one thing about having to put money into them and actually ride. She’s perfectly content just to sit and play on all of them, but she likes to play on them forever. So now whenever Ava and I go out and about and I ask her where she wants to go, the standard response is, “Let’s go to the mall and get a cookie and ride some rides!” We topped off our day by going to Barnes and Noble. Each of the girls got a book, and Ava loved going in there to play with their train set in the children’s section.

I suspect this is more than enough for you to read…it’s the holidays, and I know everyone is busy! Thank you all for regularly checking the blog for updates to see how we’re doing. I appreciate all of your continued prayers as well…I’m certain that’s why we are doing as well as we are. Now, go count your blessings and be thankful for all that you have!

We're Off to See the Wizard...

2008-10-30T22:44:00.010-04:00

Happy Halloween! The girls have already been trick-or-treating twice this year, so we’ll just have to see if they get to go again Halloween night. Richland Northeast had their annual “Trick or Trunk” on Sunday afternoon then Airport High hosted “Trick or Treat Lane” on Thursday night. There is a gracious plenty candy for the girls—and maybe a couple of pieces for me as well.

The pink eye is coming full circle. After both Savannah and Ava had gotten over it, I became the lucky victim early last week. I went to the doctor before it got completely out of control, so it wasn’t too bad. That was the first time I had ever put any drops in my eyes independently. All of that stuff creeps me out—I swear I don’t know how people can handle regularly using Visine or putting in contacts. It appears that the pink eye may be in the early stages of getting back to Ava, but she’s got a prescription, so it should go away quickly. I took Savannah in for her one year check up (yes, she turned one last month, but when I called in mid-August, the first appointment available was at the end of October) and we were just so lucky to find that she has a double ear infection. I don’t know what’s up with this child and ear infections. Ava has never had one; this has to be at least Savannah’s third. Of course, I should count my blessings that she hasn’t had all of the issues Ava had when she was her age. We practically lived at the doctor’s office the first year and half of her life.

Sorry to cut this short, but it’s getting late, and I’ve got a few things to do before I go to bed. I’ll leave you with a few pictures of Dorothy and the Cowardly Lion.

Surprise, Surprise! A New Post!

2008-10-08T23:40:00.005-04:00

Yes, I realize it’s been a little while since I last posted. (Two months is a little while in the grand scheme of things, isn’t it?) But it certainly is not because I haven’t thought about it. There’s just one teensy issue that stands in my way: time. Good grief! Where does it go? I’m staying crazy busy between working, taking care of the girls, and keeping up with my graduate work. If it weren’t for my parents helping me out so much with the girls, I probably would have been committed by now. I swear I’ll never understand why anyone would voluntarily become a single mother. (Though I am beginning to understand why there are such jobs as personal assistants and personal shoppers.) I am fully aware that there are plenty of moms out there who do the lion’s share of the work when it comes to taking care of children and things around the house. But here’s the deal: I didn’t sign up for that gig. Mike and I always split things pretty evenly. (Well, maybe I did have the better end of that stick…he did always used to tell me that when he died he wanted to come back as me!) Don’t start thinking that I’m about to have a nervous breakdown or anything, because that is not the case. It’s just that I don’t get much down time. Of course, I may have some opportunity for that on the horizon since all of my sisters gave me babysitting coupons for my birthday!

So what’s been the big news over the last couple of months? Savannah turned one year old in September, and we celebrated her birthday at the happiest place on earth. That’s Disney World for those of you who live on some other planet and are not aware of such a happy fest. The original plan was for us to go back during spring break, but that did not work out for obvious reasons. My mother and two of my sisters, Cindy and Janet, went with us. It was a blast! We had dinner with princesses on the big day—we talked with Belle then Cinderella, Jasmine, Aerial, and Alice in Wonderland all came to our table during dinner. I think Savannah’s favorite is Cinderella; Ava is a bit partial to Belle. As far as rides go, Savannah enjoyed “It’s a Small World,” and so if you’ve got your volume turned on on your computer, I’ve got the theme song playing, so you, too, shall suffer by having it in your head the rest of the day! Ava loved “The House” (more commonly known as The Haunted Mansion) and Splash Mountain at Magic Kingdom as well as “The Ball” (a.k.a spaceship Earth) at EPCOT. While we were at Magic Kingdom, Ava had an appointment at the Bibbidi Bobbidi Boutique where she received some hair extensions. They only lasted about a day and a half, but we got a glimpse of what she will look like in about twenty years when her hair finally grows out.

Ava started back to pre-school after Labor Day, though she has missed a ton of days. I was becoming concerned that she was on the verge of becoming a dropout! She was sick the first day of school, so she didn’t go. We were out for our trip to Disney and then upon our return she got a fabulous case of pink eye. It ended up being a pretty severe case; the poor thing looked pitiful. After that was over, she developed a stomach bug. She’s been okay for a week or so now, so hopefully, she’ll stay that way. We thought Savannah was going to get away without catching the pink eye, but a few days after Ava’s eye cleared up, Savannah started showing signs. We were able to get her some medication that same day, so it didn’t get out of hand.

Sorry I’m not reporting on anything else…but if you check out the time I posted this, you’ll see it’s a little late, and I have to get up early to go to work in the morning. I do appreciate you all who keep checking back to see if I’ve posted anything. I’ll try to do better and not wait two more months before the next update. Until then, check out some of pictures from Disney World…

Back to the Grind

2008-08-08T23:16:00.011-04:00

The girls and I have not fallen off the face of the earth and gone to join Mike…I’ve just been a bit busy, so that’s the reason for the delay in the post. I have three jobs now ya know—my regular job at school, Mommy, and now Daddy, too! I know many of you non-education folks think we educators have it sooo easy with our summers off, but I really don’t feel like I’ve had much of a summer at all. I had class for two weeks, attended two conferences, and had a few other school-related meetings to attend. I’m officially back into the full swing of things at work, so I really won’t have much down time…not that I had much in the first place.

The Pampers, baby wipes, and Sprite Zero just don’t suddenly appear in the house anymore. I actually have to go out and get that stuff. What’s up with that? I must say that I think Mike would be quite surprised that I have been able to navigate myself around the grocery store and keep the house pretty well stocked with grub. For those of you who don’t know, Mike used to do all of the grocery and household shopping. (And you ladies go ahead and let your hubbies know he did all of his own laundry, too!) Mike would probably be disappointed that I do only go to one grocery store a week—he used to scour the weekly ads and stop by at least three or four different grocery stores each week to pick up whatever they had on sale. But, he never had to do it with two tots in tow. Plus I think I get brownie points for actually clipping coupons from the Sunday paper. And not only have I clipped them, but I’ve used them as well. The only coupons I was used to clipping were for department stores. How’s that for me being progressive?

So, here’s your dilemma for the day, which was my conundrum a few weeks ago. Let’s say you’re at your local Target doing the household shopping with your two small children. Riding up front is your 10 month old who is able to sit in the cart rather well; your three old, who is in the midst of potty-training and has been doing quite well not wetting herself, is in the back of the buggy (that’s a cart for you non-Southerners) with all of the items to be purchased. As you’re shopping, your three year old suddenly announces, “I need to go pee-pee!” The only bathroom available (according the pharmacist) is in the front of the store. Getting to the front of the store isn’t that big of a deal. The big deal is that you can’t take the cart in the bathroom. What are you going to do with the 10 month old while you assist the three year old on the potty? You can’t exactly just leave her sitting outside the restroom alone. While the hope is that there will be some sort of Divine Intervention where you run into someone you know who can momentarily watch the baby, that doesn’t happen. So how do you solve the problem? Let that swish around in your ol’ noodle for a bit…I’ll tell you what I did at the end of this post.

Since I promised I’d tell ya…the girls and I went to my sister’s house for the Fourth of July; spending Independence Day with my family has pretty much been tradition since Mike and I started dating. Mike used to really get into the fireworks for the occasion…over the years, he and my brothers-in-law turned it into quite the show. The first year we did the fireworks, it was a little experimental, but Mike made notes of which were the best and kept the information for the following year. He would then spend a couple of weeks before the Fourth frequenting the fireworks booths to find the best deals. One year he saved the tubes that were used for launching and nailed several of them to a board, so multiple fireworks could be lit at one time. Did I mention the part about the guys using a blowtorch to light them? Yes, a blowtorch. I swear there’s so much testosterone floating around that someone is going to lose a limb one of these days. Anyway, since Mike used to always get into making sure we all had a fabulous fireworks show every year, my brothers-in-law did the show this year in memory of Mike and even added some patriotic music to go along with the event. It was awesome…Mike would have been most pleased.

Ava, on the other hand, was not so pleased. She was completely terrified of the fireworks…I couldn’t even talk her into watching them through the window. The problem started the previous night when someone was setting off fireworks in our neighborhood. She asked what the noise was and said it scared her. When we said were going to do fireworks on the Fourth, she was adamant that she was not going to watch them. She had to be held and rocked the entire time; she even decided that she had to hide from them, so she buried herself in the rocking chair. I kept her initially, but my mother came in and insisted I go out to see this year’s display. Ava really was pitiful. Hopefully, she’ll get over her apprehension by next year. Of course, by then Savannah will probably be petrified of them.

I was also able to take the girls to the beach for a week in July; neither had ever been. I was going to take Ava last August, but we were having that string of 100+ degree days and I was eight months pregnant, so I didn’t think that would be any fun for anyone. I certainly wasn’t brave—or crazy—enough to take the girls this year by myself. My parents and a couple of my sisters rented a house for a week. Packing for two little ones for a week is no easy feat. I swear I don’t know how my parents managed to take me and my four sisters on a vacation every year when we were young. Ava was a little hesitant about the ocean at first, but once she got in, she had a big time. Seeing as how she likes to eat straight salt at restaurants, the water getting in her mouth didn’t faze her. And let me just go ahead and point out that the fact I went into the ocean is clear evidence that I love my daughter. I can’t tell you the last time I’ve been in the Atlantic beyond my ankles. The whole thing creeps me out…particularly when I walk through a warm spot. Ewww! Savannah’s aunts introduced her to playing in the sand when I wasn’t around, and she loved it. I’ve included some pictures from our trip at the bottom of this post. All pictures are compliments of my sister Janet…she has become the official family photographer since she has the fancy shmancy camera.

That’s about all of the big excitement for the summer. Oh, before I forget, I have to tell you how I solved my Target predicament. Before going into the restroom, I went to the very front of the store and picked up a shopping handbasket to take in the restroom with us. I then used the handicapped stall, put the basket on the floor and placed Savannah in it while I tended to Ava. How’s that for creative thinking on a whim?

Fourth of July

2008-07-17T18:20:00.002-04:00

Here are a few pictures of the girls from the Fourth of July. I'll write a little more about it later...suffice it to say Ava had a grand time in the pool, but she was terrified of the fireworks. She had to "hide" from them.

It Doesn't Feel Like School Has Been Out a Month

2008-06-29T21:52:00.004-04:00

I know you all are thinking that I’ve had a gracious plenty time to post something to the blog since school has been out for a month now. I mean, c’mon, that’s the point of going into education, right? To get those three months off during the summer. My summer vacation is actually just beginning this week. Last week I was at a conference and the two weeks before that I had class. I’ve only had one week off thus far, and I spent it going to probate court and taking care of some of the “business” things. Coming soon to this blog (and soon is a relative term): How to make your spouse’s life easier in the event of your untimely death. Boy, getting all of that stuff straight is no fun.

Earlier this month I had the opportunity to attend Richland Northeast’s graduation. Since Mike was the athletic director, he normally sat on the stage. In his chair this year they had a football, whistle, and RNE baseball cap. The principal began his address to the graduating class with, “Ice Cold Water!” In unison, the class responded, “Chick-fil-A.” You would have thought it was rehearsed, but none of them knew he was going to do that. I’m sure the folks in the crowd were wondering what in the world was going on! The principal went on and talked about Mike a bit and the importance of relationships in life, one of the things Mike valued so much.

Some of y’all know that with my job I’m part of the South Carolina Reading Initiative. And those of you who didn’t know, well, you know now! We’re a group of literacy coaches from across the state that meet monthly for state study, and we’re also divided into three regions that meet monthly as well. The two weeks I had class this month were for SCRI. A week after Mike passed away in April, my region had their regularly scheduled meeting, but I did not attend because I had not yet returned to work. At that time they took up a collection of money and purchased a large selection of young adult sports-themed novels that are going to be donated to Richland Northeast High School. Inside the front cover of each novel is a label noting that it was given in memory of Mike. They presented the books to me when we were divided by region in class. There are some really awesome titles in the collection including Friday Night Lights and Walter Dean Myers’ latest, Game. It’s tempting to keep a few for my own library, but I will make sure they all make their way to the mighty Cavaliers.

Ava and Savannah are doing well. I’m sure it won’t be much longer and Ava will be wearing her hair in a ponytail. Five years isn’t long, is it? Savannah is able to stand by herself now and will be walking before long. I personally prefer the walking stage over crawling. We’ve had a few thunderstorms over the last few weeks as is typical this time of year. When it started thundering, Ava asked, “What’s that?” To keep her from getting scared, I thought about what we used to say as kids in regards to thunder and told her that it was Daddy bowling. Now, being a literacy coach, I should have known better than to tell her something that she has never seen or heard of. If a child (or any person, for that matter) doesn’t have something to connect new information to, he or she isn’t going to understand it. It’s not as if we watch bowling championships on ESPN around here. Anyway, Ava’s response to me telling her that the thunder was Mike bowling was, “Daddy doesn’t have bowls.” She still doesn’t have a clue what it means to go bowling, but whenever Ava hears thunder now and you ask her what that is, she’ll say, “That’s Daddy’s bowls.” I guess one of my projects over the summer will have to introduce to her to the game of bowling. I’ve played once on a Wii, but I don’t think showing her that way will be quite the same.

Decker Boulevard Chick-fil-A Rocks!

2008-05-25T21:24:00.008-04:00

No, I have not fallen into a great abyss and disappeared from the face of the earth. The whole working full-time and being an instant single mother is a little time consuming (Who knew? Clearly these celebs who are choosing to be single mothers multiple times over have full-time nannies to do everything for them.), and I haven’t gotten into a complete routine yet. But don’t you worry your pretty little heads…I’ll get it down before long and will be back to my Johnny-on-the-spot ways. I’m very fortunate to have parents who help me out with the girls quite a bit, or else I really would be over the edge by now.

I must give yet another shout-out to the Chick-fil-A on Decker Boulevard. They did an awesome job with the Mike Starnes Night—I wasn’t expecting them to go all out like they did. Wow! Angela, the marketing director, read the blog where I posted about me and Mike going to Hawaii, so she went with a Hawaiian theme for the event. There was a tropical backdrop and leis for folks as they arrived. Blue and orange balloons (RNE colors) were abound, and stuffed cows and games were available for the kiddies…checkers and a cup stacking game—apparently we all missed the market on this one; it is an official game with cups that you stack, unstack, and time yourself doing so. There was a karaoke machine, but I didn’t see anyone brave enough to take it on. They even had a chanting contest of Mike’s signature “Chick-fil-A…Ice Cold Water.” Three girls from Northeast won as a trio—sorry, I didn’t get your names, girls! The Chick-fil-A cow even made an appearance. Ava was a little skeptical of the cow, but she had a BIG time climbing around in the indoor playground. “One more time” were her famous last words. Many thanks to all of you who came out to the event and/or purchased a t-shirt. Between the profits of the food sales and t-shirts (160 were sold!), $1093 was raised for the memorial. Not bad. Not bad at all!

At the end of the evening Ava and I did our new tradition—she gave one of the helium balloons a kiss and let go of it to send to Daddy. Savannah will partake once she’s a little older…she doesn’t have the kiss puckering thing down pat just yet, and I’m thinking letting her slobber all over latex isn’t a real good idea. And before you start thinking I’m that smart (though according to the Internet, I do have a Mensa-level IQ…and everything on the Internet is true and accurate, right?), I didn’t think of the whole balloon thing myself—someone at work told me about it. And don’t go giving me credit for thinking of the beach metaphor for eternity mentioned in my last post either. I heard about that many, many, many years ago, though I have know idea where.

Until I can get my act together and post again, here are a few pictures from Mike Starnes Night at Chick-fil-A…

But How Is She Really Doing?

2008-05-05T21:41:00.000-04:00

That seems to be the $64,000 question. Amazingly, I’m doing pretty well considering the circumstances. I assure you that reality has set in, and I am not going to have some sort of mental breakdown in a few months when I realize Mike is gone. I am well aware that he is not going to come walking through the door of our house. Ever. If he did, you would hear me scream because it would probably scare the bejeebers out of me. I think some people seem to be a bit perplexed when they see me because I seem to be my normal self and don’t seem depressed or anything. I am not, I repeat not, in denial. I just happen to not be an overly emotional person to begin with. Just because I’m not bawling my eyes out in public on a regular basis does not mean that I have not had my moments when I’m alone. What I need now in my life is some normalcy. That is something that I haven’t had over the last few months, and Mike certainly wouldn’t want me to stop going on with life. Your prayers are certainly helping me with this. I have also had the last three and half months to prepare myself for Mike’s passing and there are some other fundamental beliefs I have that have helped me through all of this.

Everything happens for a reason.
I’m a firm believer in that God has a master plan for things even though we don’t always understand why things happen the way they do. It’s not my place to question God and why Mike passed at such a young age. Maybe this whole situation touched someone else’s life and has caused a change. I don’t know—I’m not the one in control of the universe. (And I assure you if I were in control, I don’t know that I would allow quite so much free will to occur!) Mike had been wronged by some people in his lifetime. I told him back in January that maybe this all happened so those people could think about the things they did and make some changes in their lives. Mike’s response? “Well, I don’t see how that’s fair on any level. But I sure will ask God about it when I get to heaven.” I suspect Mike now knows the answer even though we don’t. But since when has life been fair? Never. That’s when. And I don’t suspect that will ever change. From the wisdom of one of my high school girlfriend’s father: If life were fair, there wouldn’t be any cripple people.

God doesn’t give us more than we can handle.
When you’re in a difficult situation, you do what you have to do. How many times have you looked back on your life and wondered how you managed to do the things you did? Mike and I had a unique marriage. A lot of the reason I’m able to handle things as well as I am now is because of that. Perhaps it was because we were no spring chicks when we married—Mike was 37 and I was ten years his junior. We had both lived on our own and were used to doing things our own way. There was a lot of independence in our marriage, and that worked well for us. Mike always did what he wanted to do and I always did what I wanted to do, and when we wanted to do something together, we did. Mike was a very early riser, so it was rare that he was still in bed when I awoke in the mornings. Mike’s job required him to be at all home athletic events. Given that there are over 40 teams at the school, Mike often had to work late at night, so there were many evenings that I was in bed before Mike ever got home. Since January, I’ve been coming home to an empty house to sleep every night. All of these things have helped me adjust to how things are now.

I will see Mike again.
I have often wondered how people with no faith get through difficult times in life. Our time here is so miniscule compared to the grand scheme of things. If you think of eternity as all of the sand on the beach, our time here on Earth is equivalent to one of those grains of sand. I completely believe in making the most of your life while you’re here, but there’s much more time ahead once we leave.

I have been preparing myself for the inevitable since January 2, when I saw Mike’s CT scan indicated his tumor was a glioblastoma. As I mentioned in a much earlier post, my boss passed away from the same thing last summer, so I was fully aware of the likely outcome. Things happened more quickly than anticipated—I thought we would at least get a couple of quality months together. After Mike recovered from his biopsy, he and I planned on taking the girls to Disney World over spring break and having him make some videotaped messages for the girls for when they got older. Had we known things could have gone south as quickly as they did, we would have been videotaping the day he was released from the hospital. I can rest well at night knowing I did everything within my power for Mike these last few months from contacting Duke at the earliest time I could to being at the hospital every day and making sure he got everything he needed. I can’t think of anything I could have done differently. Though Mike was mad at me in January for making him stay at the hospital between the time they got his brain swelling under control and his biopsy, I am especially glad I did that because so many of you were able to come by and visit with Mike when he was pretty much his regular self.

So, don’t you see? I’m really the lucky one out of all of you reading this. I’m the one who got to be married to Mike. Everyone thought he would be a bachelor forever, but he chose me. (Okay, so none of you guys reading could have ever been an option, but you know what I’m driving at here.) I’m the one whom he took to Jamaica. Twice. I’m the one who got to travel all over Europe with him. I’m the one who got to spend two weeks in Hawaii with him—one week in Waikiki and another on a cruise to the other islands. I’m the one who got to cruise to Mexico with him. I’m the one who gave birth to his children and get the joy of raising them. Do I wish Mike were still here so we could spend even more time together and raise our girls? Absolutely. If I could, would I give up the last nine years of my life just so I wouldn’t have to go through what I’m dealing with now? Absolutely not. Mike was an amazing man, and I am a better person for having been married to him.

Chick-fil-A...Ice Cold Water!

2008-04-28T19:58:00.014-04:00

Not all students at a high school know who the athletic director is or what he does. Heck, some of those not involved in sports don’t even know such a person exists. Most students at Richland Northeast High School didn’t know Mike as the athletic director; they knew him as “The Chick-fil-A Man.” Mike earned this title by selling Chick-fil-A sandwiches in the courtyard every day, chanting “Chick-fil-A…Ice Cold Water!” There was a rhythm to it. A chant. The kind of thing that really got on the students’ nerves. (Though the word on the street is they miss it now and tell the others who have been selling the sandwiches since January that they don’t do it right.) In fact, I think Ringling Brothers was waiting on Mike’s retirement in a few years, so they could recruit him to pawn off cotton candy and fresh, fluffy popcorn.

The faculty at Richland Northeast is planning to create a memorial for Mike to be placed near the courtyard where he became famous. (Or is that infamous?) Though nothing is carved in stone yet (still waiting on those price quotes!), they’re hoping to have a three-foot cavalier mounted on a three- or four-foot pedestal. They know this is going to be pretty pricey, so some fundraisers are in the works. Friday, May 16, is going to be Mike Starnes Night at the Chick-fil-A on Decker Boulevard. (This is just about a half mile or so from Columbia Place, formerly known as Columbia Mall.) A portion of sales from the evening will go towards the purchase of the memorial. All you have to do to help is dine at the Chick-fil-A on Decker Boulevard between the hours of 4:00pm and 8:00pm on May 16 and place your receipt in the one of the baskets at the registers. (The receipt part is very important…no receipt, no portion of the proceeds!) The staff at Chick-fil-A is planning on having all sorts of things going on that night…I believe karaoke was even mentioned! I sing about as well as Cameron Diaz in My Best Friend’s Wedding, so don’t even think I’m getting near the microphone. I’ll be happy to cheer others of you on, though! T-shirts will be available at Chick-fil-A on Mike Starnes Night. They are blue with white writing and the cost is $10. The front has a cavalier boxed in with a braid (symbolizing Mike bracelets) and the back has Mike’s famous words, “Chick-fil-A…Ice Cold Water.”

If you can’t make it to Mike Starnes Night but would like to make a donation towards the memorial, you can send a check made payable to Richland Northeast High School to the school. Donations may be sent to the following address:

Janet Bush
Richland Northeast High School
7500 Brookfield Road
Columbia, South Carolina 29223

I do have to give a shout out to the Chick-fil-A on Decker Boulevard for donating the food for Ava’s birthday party. Ava turned 3 on Friday, and she just loves Chick-fil-A, so that’s what was on the birthday menu for Little Miss Priss. (Her father did not brainwash her…I think this penchant came from the fact that her mother doesn’t cook and she has frequented the establishment often.) Chick-fil-A donated all of the food to us at no cost to our family, and Ava loved, loved, loved her birthday dinner! And being the proud mother that I am, I have to take this opportunity to share a couple of pictures from the festivities. I know, I have no shame. (And, by the way, for those of you who don't know--Ava has NEVER had a hair cut. That is all her hair has grown in three years! On the bright side, it's a breeze to fix when we're running late and I don't have to have her battle with hair dressers to sit still for a cut.)

What Happened?

2008-04-21T23:41:00.005-04:00

Thanks to all of you who came to visitation and/or Sunday’s service. I was able to talk with many of you on Sunday, but there were some names in the registry that I missed. I think Mike would have been pleased with the service and honored by those of you who came. Though he wasn’t too keen on the whole idea of the blog to begin with (“It’s a woman’s thing,” he said.), I think he ended up being glad that we had it. When he was discharged from Lexington Medical Center in January, I had to read the entire blog and all of the comments to him. (I guess I had to read it to him instead of him reading it for himself since computers weren’t really his thing…if you’ve every seen him type, you’d know this quite well!) He nodded his head and had tears in his eyes—okay, maybe not tears, but they were glassy—when I read many of the comments.

I know many of you are curious as to how things unfolded on that last day. And since this blog isn’t just for you—it’s for Ava and Savannah as well—I want to share what happened. Last Wednesday while Mike was in ICU, his cousin Roz was visiting and we discussed the whole idea of not having the doctors go to any heroic efforts should Mike’s health start to go further south. It just didn’t seem to be the right thing to do given all of the issues Mike was having. Sure, he could live on life support for 20 years, but Mike wouldn’t have wanted that, and it’s not as if it’s painless to have to go through those extremes. He wasn’t exactly one who liked to stay in one spot for any length of time, so I know he was already going nuts having to sit in that hospital room for two and half months. That’s exactly why he loved to take cruises for travel, because he didn’t have to stay in one place for more than a couple of days. Heck, when he planned our trip to Europe back in 2002, we visited eight countries in 22 days.

Anyway, there really wasn’t much eventful that happened on that Wednesday other than they found two blood clots in his legs and put filters in to keep them from going to his lungs. I stayed at the hospital until 10:00, when ICU closed. Around 1:00 that morning, the nurse called me and said that Mike’s heart rate had been dropping and in her twenty plus years of experience that meant that she would have to soon “code” him. In other words, she would have to go to extreme measures to keep him alive. I brushed my teeth, threw on some clothes, and headed to the hospital. I called Mike’s other cousin, Regina, to make sure she was on the same page as Roz and I about not doing anything heroic. Regina and Roz were next in line on Mike’s health power of attorney, so if I got killed on the way to the hospital, then they needed to know what was going on and make the right decision. I arrived at the hospital about 1:20, and Regina got there shortly after that. Mike’s heart rate was all over the place. It would go from the 40’s then up to the 50’s and 60’s and jump to the 80’s then drop again…all in a matter of seconds. It did that for quite a while. I informed the nurse of our decision of not to go to any extreme measures. She telephoned the on-call doctor, so that I could tell her. The nurse handed me the phone, and the doctor said, “So we’re not going to DNR?” I responded with, “I don’t have my medical degree yet, but I’m assuming you mean do not resuscitate, and that would be correct.” The doctor then said something about having a second nurse confirm, and I told her I was the wife and handed the phone back to the nurse on duty.

It was rather amazing how much nicer the staff was around there when then knew this was the beginning of the end. I had been none too happy with the ICU staff since Mike arrived there Tuesday afternoon. Those are completely different stories that I could probably do another few posts on—and he was only there a couple of days. They brought a tray of snacks and drinks and it suddenly didn’t matter how many people were in the room. Mike’s aunt and uncle arrived around 3:00, and Mike’s heart rate began to stabilize in the 50’s. I was exhausted and pulled up a chair next to Mike’s bed and slept (if that’s what you can call it) beside him, holding his hand. Just as I was getting to sleep, they came in and did a chest x-ray on Mike. I’m assuming that had already been ordered as a follow-up to check on the blood clot they found in his lung on Tuesday. After the x-ray, I got back in my makeshift bed and slept for a few hours.

The pulmonary doctor came by around 7:00, and Mike’s heart rate had been staying steady in the 50’s. He said all of the swelling in Mike’s brain was adding pressure and that could cause problems with enough blood flow in his brain because there’s only so much room in the skull. No blood flow would mean more brain damage. Our oncologist came by around 8:30. He said since Mike had stabilized and we weren’t going to go to any heroic efforts should something happen (which he thought was the right choice and would do the same for him family members—we had had that discussion the day before), he was going to have Mike moved out of ICU to either a step-down unit or the pulmonary floor, so we wouldn’t have to deal with all of the visiting regulations. I asked him if he thought it was safe for me to leave for a while to go home and do something to myself so I could be a little more presentable. He thought that would be fine. Mike’s aunt, uncle, and cousin were there, so I felt okay with leaving for a bit and they could fill me in on anything that happened.

I came home and washed my hair and took a bath. (I’m not a shower person, okay?) After drying my hair, the phone rang, and it was the nurse. She said Mike’s heart rate was now skyrocketing and his oxygen rate was dropping despite being on the BIPAP machine--she thought it was just nature taking its course, and she needed to know if I still wanted her to not “code” him, even though I wasn’t there. I told her not to do so, and I would be up there shortly. There was the chance that Mike could have been gone by the time I got the hospital (and I confess that I did run a red light, but it wasn’t a real red light, and there was not traffic coming), but I thought it would be selfish of me to have him go through all of those extremes just for me to see him again. We had already decided it would be best for him not to go through that, so changing my mind would have been what was best for me, not him. Fortunately, I arrived back at the hospital before anything happened. Mike’s heart rate was indeed up and his oxygen was dropping. Both would jump around. They would seem like they were okay, then they’d change. Knowing my husband was in his final moments, the nurse thought it would be a fine time to call me away from him to tell me that she didn’t get any reflexes from him this morning and his eyes didn’t change when she flashed the light in them. She was going to tell me more, but I was watching Mike’s oxygen level drop even more, so I just walked away from her and back to Mike. I’m guessing the only reason she didn’t say anything while I was at his side was because his aunt, uncle, and cousin were there and it might somehow violate those lovely HIPAA laws. Anyway, his change in oxygen and heart rate continued for a while and the nurse asked if we wanted to take him off the BIPAP machine. I said yes because I thought that might be a little more comfortable since the end was inevitable anyway. I think I got about an hour or so with him before he drew his last breath.

Last night was the first night I had Ava with me since there was so much to take care of the last few days. She had not been told about her daddy. I didn’t want to tell her last night before she went to bed, so I talked with her about it this morning—I broke one of those cardinal parenting rules and let her sleep in my bed. Telling her was definitely one of the most difficult things I’ve done since all of this started back in January. How does one explain such a thing to a child who really has no concept of death but does know she doesn’t see her father? Saying nothing wasn’t an option because I don’t want her to think Mike just up and left us. I told her that sometimes when people are really sick and in the hospital for a long time like Daddy was, they can’t get better. Ava put her hand over my mouth and held her head down. I knew she wanted me to stop talking, but I had to tell her. I told her that Daddy died because he couldn’t get better. That meant that he couldn’t walk or talk or do things anymore. I told her that you know how some things have batteries and the batteries make them work? (She’s very familiar with the battery concept—when the garage door wouldn’t close, she told me it needed new batteries.) We have a battery inside of us that’s called a spirit, but it can’t be replaced. When the spirit stops working, it goes to stay with God, so He can take care of it. I told her anytime she wanted to tell Daddy something, she can just ask God to tell him for her. When we said our prayers tonight, we asked God to please tell Daddy we said hello and that we love him.

Services

2008-04-18T12:00:00.005-04:00

This is one of the last pictures taken of Mike on his birthday this year with girls. Visitation will be 5:00 to 7:00 Saturday night at Dunbar Funeral Home—Dutch Fork Chapel. Services will be at 3:00 Sunday afternoon at Cornerstone Presbyterian Church. The church has a Columbia address, but it’s in the general Irmo area—on Old Bush River Road, just past Saluda Shoals Park. Don’t be surprised if Mike is turned over in his casket at the visitation; the price tag on all of these services just might do that to him!

The Dash
Linda Ellis

I read of a man who stood to speak at the funeral of his friend.

He referred to the dates on her tombstone from the beginning...to the end.

He noted that first came the date of her birth and spoke of the second with tears,

but he said that what mattered most of all was the dash between those years.

For that dash represents all the time that she spent alive on earth,

and now only those who loved her know what that little line is worth.

For it matters not, how much we own--the cars, the house, the cash.

What matters is how we live and love and how we spend our dash.

So think about this long and hard,

are there things you'd like to change?

For you never know how much time is left.

(You could be at "dash mid-range.")

If we could just slow down enough to consider what's true and real,

and always try to understand the way other people feel.

And...be less quick to anger, and show appreciation more

and love the people in our lives like we've never loved before.

If we treat each other with respect, and more often wear a smile,

remembering that this special dash might only last a little while.

So, when your eulogy is being read with your life's actions to rehash...

would you be pleased with the things they have to say about how you spent your dash?

Thank you all for all of your kind words, calls, e-mails, and blog posts. If you have a few moments, please post a little something about Mike’s dash.

End of the Road

2008-04-17T14:54:00.002-04:00

Mike passed away this afternoon shortly after 12:00. No specific plans have been made yet.

When It Rains, It Pours

2008-04-16T09:11:00.006-04:00

So when I had y’all send out the e-mail chain last week, I thought I asked for some sort of healing, not for a hex to be put on Mike. Things have progressively gotten worse, and after a more than two month hiatus, Mike is back in ICU. He started having seizures yesterday around 1:30. You know nothing good is coming down the pipe when you’ve got five medical professionals in the room and a few more standing outside the door. I’m not sure what the folks outside the room were doing. Maybe it’s the medical equivalent of rubbernecking? Mike had a CT Scan on both his head and chest yesterday afternoon. It appears that Mike had a small stroke. And you remember that thing the doctor was a little worried about in his lungs yesterday? The CT scan showed that that would be a blood clot. Lovely. The bonus problem that comes with that is that Mike needs blood thinner to help with the clot but with his platelets being so low, even more problems can ensue. (They're around 27,000 today.) Mike is back on a BIPAP machine to help his breathing. He was on one of those a few weeks ago for a couple of days. Despite being given extra steroids over the weekend, Mike has a substantial amount of swelling in his brain. Obviously, with all of these issues, there will be no Avastin given today. Things aren’t looking real good for the home team. Miss Scarlett, we may just be running out of those tomorrows.

Be sure to read the post after this one...it's new!

The Wit and Wisdom of Mike Starnes

2008-04-16T09:09:00.001-04:00

I’ve known since Mike’s CT Scan on January 2 that he had a glioblastoma (I looked at the report that I had to give the hospital when we checked in) and was fully aware of the typical fate of those diagnosed with that type of tumor. So, I created this blog not only to keep all of y’all aware of Mike’s medical condition on a regular basis, but also so there would be a record of everything that Ava and Savannah could one day read. The idea of you all writing comments could let them know their father a little better. (One of my favorite threads is the one from his birthday where you all shared stories.) Those of you who have been fortunate to know Mike know that he has an incredible quick wit and has come up with some brilliant one-liners. If you’ve had the joy of experiencing some of Mike’s classic lines (or the misfortune of being the brunt of some of them!), do share, so the newcomers—and one day our girls—can learn a little more about, as Mike would say, the man, the myth, the one to be with. I’ll get us started!

On not having a chance:
I feel like a one-legged man in a butt-kicking contest.

On students dealing with a substitute or student teacher:
They’re ready to get out the knives and start carving.

On dying:
We start dying the day we’re born.

On heaven:
Everybody wants to go to heaven, but nobody’s in a hurry to get there.

The Hits Just Keep On Comin'

2008-04-15T09:33:00.001-04:00

This morning when I came in, Mike had on an oxygen mask; his oxygen level dipped early this morning (it was around 83—they like for it to be over 92). They normally just use the oxygen assistance like he had last week, the kind that sits at the base of his nose, but Mike was having some nosebleeds yesterday, so they didn’t want to irritate his snout anymore. And just for the record, I did not cause the nosebleeds this time. I am very well aware that I have an aversion to boogers, but Mike’s bleed was not, I repeat not, caused by me getting rid of any of the pesky things. Nosebleeds aren’t too uncommon when platelets are low, so that was the sole source of it. Speaking of platelets, Mike’s are now at 42,000. At least they didn’t drop by several thousand like they did yesterday. Mike did get some blood last night, and his hemoglobin is a better as a result.

And as our luck would have it, the Avastin is getting put on hold for yet another day. It seems our problem child sounds a little junky in his chest, so he’s going to have a chest x-ray done today. The doctor wants to make sure there’s no severe infection there. Mike’s antibiotics are going to be changed slightly to try and help with that. The doctor said he is a little worried (not one of his normal vocabulary words) about it, and he wants to make sure that Mike is generally in pretty good shape before beginning the Avastin. What’s that, Scarlett? Yes, tomorrow is another day indeed.

Bloody Blood Work! (That's My Inner Brit Coming Out)

2008-04-14T12:35:00.001-04:00

Sorry for the delay in the post today. For some reason, the lab wasn’t able to read Mike’s blood sample from earlier, so they had to come in and draw some more blood. Exciting stuff there. For some reason they’ve been having trouble getting blood from Mike’s PICC line (essentially a long-term I.V.), so they have to draw his blood the old fashioned way. Ouchy!

I just got the results from the second lab, and Mike’s platelet count has dropped to 44,000. Crud. Before we had the official count, I talked with the doctor, and he was going to wait until tomorrow to start the Avastin since we didn’t have any reports on the blood work yet. Mike’s hemoglobin also dipped a bit over the weekend, so he may end up getting some blood this afternoon to help with that. I know several of you have offered to donate platelets to help, but the doctor said giving Mike platelets is sort of like putting a Band Aid on the problem. Platelets don’t last very long—your body is constantly regenerating them, which is why a person can donate platelets every couple of days. Mike’s body needs to start generating them on its own, so he’ll have a constant flow. If he were given platelets, they would be gone in a few days, and wouldn’t really help him regenerate any more. Avastin itself doesn’t actually hurt the platelet count, but it sometimes can cause bleeding. If Mike takes the Avastin and begins bleeding, he needs to have plenty of platelets in his system—that’s why Duke is wanting them to be 75,000 before he takes the drug.

Other than that, there’s really not anything else to report. Mike is eating the scrumptious puréed food okay—breakfast is the most time consuming of the meals—and he’s still being difficult when brushing his teeth; he swallows the toothpaste. I just don’t think toothpaste makes such a great dessert after breakfast, but I’ve never tried it, so what do I know? Swallowing fluoride just doesn’t seem like such a hot idea to me.

Small Steps and Another Must-Read

2008-04-13T11:57:00.001-04:00

First of all, I want to thank all of you for passing along the e-mail and getting the prayer chain a-goin’. I can tell that in addition to Mike, many of you have prayed for me also because yesterday was the first time in a long time (and when I say long, I mean loonnnng) that I have not felt completely exhausted. I didn’t even feel like I needed a nap yesterday! Yahoo! Mike’s platelet count dropped ever-so-slightly to 48,000 yesterday, but it is up to 51,000 today. When I came in yesterday morning, Mike had been taken off of the oxygen assistance and has remained off of it since his oxygen levels have been pretty good. Another yahoo! I know that’s got to feel so much better on his nose. Having the oxygen in can sort of make one’s nose pretty darn dry, and who wants that? Not me, that’s for sure. And I’m going to go out on a limb here and say that Mike would say he doesn’t want a dry nose either. Mike did crack a slight smile at me last night while I was talking with him, which is more reaction than I’ve gotten from him in the last week. Thanks again for all of your prayers; I’m sure they’re responsible for these small improvements. I’ve got to keep reminding myself of small steps. The journey of a thousand miles begins with a single step, right?

So I read another book yesterday that I must recommend to you—The Last Lecture by Randy Pausch; it’s a pretty quick read. You may have already heard of it since the author was featured in last week’s Parade section of the newspaper and was on Primetime with Diane Sawyer last week. Pausch is 47 years old; he was diagnosed with pancreatic cancer and given three to six months to live. He was a professor at Carnegie Mellon University and was asked to give a traditional “last lecture” where professors typically talk about what matters most to them. Since Pausch has three small children (ages 6, 3, and 18 months), he decided actually to craft the lecture for them, talking about life lessons and living life to the fullest. It was videotaped so his children could see it one day and have a glimpse of who their father was. It became an Internet phenomenon and evolved into even more musings in the book. You can read more about it and view the lecture on his website at http://www.thelastlecture.com/. I definitely encourage you to check it out!

E-mail Prayer Chain

2008-04-11T10:06:00.000-04:00

Mike’s platelet count continues to be not so great and just bounces around. Yesterday it was at 59,000, but today it’s back down to 49,000. Our doctor talked with the doctors at Duke and they were pretty adamant that Mike’s platelets need to be at 75,000 before he begins the Avastin. So, while the original plan was to begin the Avastin today, we’re going to give Mike the weekend to try to build up his platelet count then go ahead with it on Monday. There is a bit of calculated risk with him going ahead and taking the Avastin, but neither our doctor here nor I see that there’s really any other option—we can’t afford to wait any longer. Mike is going to get some extra steroids this weekend to prevent his brain from swelling, so our Avastin plan can come to fruition.

Mike definitely seems to be getting weaker to me. He hasn’t spoken to me since last Friday. We certainly didn’t have any conversations before then to where we were solving all the problems of the world, but usually he could respond to questions and say at least a few words at a time. Eating seems to have gotten to be more of a chore and brushing his teeth has become more difficult over the last several days.

I’m not normally a fan of forwarded e-mails, but this has been on my heart for quite a while, so I’m asking for your help here. The combination of everything I wrote above and the finding of the new mass that has developed over the last month has led me to ask y’all to help me start on e-mail prayer chain. Obviously, I don’t have all of your e-mail addresses, so I’m asking you to copy and paste the message below and create an e-mail to send to everyone in your address book. We all know that prayer changes things—that’s the only reason Mike is still with us now, but I feel like we need as many prayers as possible and e-mail is a pretty simple way to make that happen. Results for others taking the Avastin have been great, but there is no guarantee that it will yield the same results for Mike. Fortunately, our God is greater than any tumor, and He is truly the only one who can make Mike’s tumor go away. I just think that we need to have as many people as possible asking Him for that miracle. Lots of you have asked what you can do for us over the last couple of months; well, this is it…copy, paste, and send it out!

Subject: Pray for Mike

My husband, Mike Starnes, was diagnosed with a brain tumor—glioblastoma multiforme, grade IV—in January of this year. The prognosis for this type of cancer is not good—living for two years is considered long term. Mike and I thought we would at least have a few good months to spend some time together with our daughters (ages 6 months and almost 3 years), but he unfortunately took a turn for the worse and has been hospitalized since January 28.

On February 5, I was told Mike only had a few days to live, but because of the faithful prayers of many, he is still with us. Since that time, he has been through chemotherapy and radiation which has taken a toll on his body. Those treatments did shrink his tumor, but earlier this week it was discovered that another mass has formed in his brain. Prayer has already extended his life by two months, and I’m asking for your prayers to extend it even longer. Please pray for my husband’s healing and that he will recover well enough to have some quality of life. He is scheduled to begin a new treatment next week that has been successful with many brain cancer patients, but there is no guarantee it will work for Mike. Please pray for God to use this treatment to work wonders and glorify Him.

One other request is to pass this e-mail on to as many people as possible. Your cat will not catch on fire if you don’t pass it on nor will something good necessarily happen to you in ten minutes if you send it to ten people. You may, however, just may be a part of making a miracle happen. I have been keeping a blog on my husband’s condition, and you can read about our journey thus far and continue to read to discover how your prayers are working.

http://www.thelatestonmike.blogspot.com/

Sincerely,
Diane Starnes

Not Quite the Anniversary Gift I Was Hoping For

2008-04-08T09:46:00.001-04:00

Results from yesterday’s MRI are back, and they’re not so great. The tumor has only shrunk about one millimeter from the MRI on March 12. The good news is there is no hemorrhaging. The bad news is another mass has developed in Mike’s brain. This one measures 2.7cm x 3.4 cm and is located towards the back of the brain, in what’s called the left occipital lobe. From what I could find from my research (i.e. Google), that part of the brain controls vision and how one perceives colors and shapes. The doctor is sending a copy of the MRI to Duke today and will hopefully hear back from them tomorrow. He said the plan right now is to go ahead and start Mike on the Avastin by the end of this week. There’s a bit of a calculated risk with it, but given the results of the latest MRI, that’s really our best bet.

Two Steps Forward, Three Steps Back

2008-04-06T21:34:00.002-04:00

Mike’s platelets climbed to 50,000 yesterday, but they dropped a little to 49,000 today. His latest thing is to suddenly break out in a sweat but maintain a normal temperature. The doctor said he may have some sort of infection that isn’t being picked up, so Mike had a chest x-ray yesterday. The results indicated that there appears to be some sort of infection, but the doctor doesn’t seem to be too worried about it. Mike was given an antibiotic for it; that and the continued breathing treatments should help clear things up.

Mike has been pretty quiet this weekend—not much talking and a whole lot of sleeping. My idea of the Gerber sweet potatoes didn’t go over so well. I bought the “Stage 3” ones, but they still weren’t very thick. I was so excited when I gave them to Mike Friday night—I just knew that he would be glad to have something different. After I gave him a couple of bites, I asked him if they were good or nasty, and he said, “Nasty.” Arrgh! I even heated them in the microwave (my cooking specialty!) and hid the jar so he wouldn’t know where they came from. I bought some Gerber Blueberry Buckle and Mac ‘N Cheese, but I’ve been scared to try them out since the sweet potatoes went over like a lead balloon.

An MRI is still planned for Monday. Since Mike is an inpatient, there is no set time—they’ll just work him in between scheduled visits. Hopefully, I'll get some results by the end of the night, but there are no guarantees on that.

Same Ol' Song and Dance

2008-04-04T11:03:00.003-04:00

I feel like a broken record here, but there isn’t really anything new to report. Mike’s platelets are up to 45,000. (They were 40,000 yesterday.) Even though “normal” is at least 150,000, the doctor said he would be happy if they get to 100,000. He’ll actually even settle for 80,000 to begin new treatment. The MRI for Monday is still on. The results from that will determine the next step as far as changing further medication. Mike’s potassium was a little low yesterday, so he was given some and is fine now. His hands are getting a little puffy again from retaining so much fluid and will get a dose of Lasix to help with that.

I hate I don’t have anything exciting for you to read, but at least there haven’t been any setbacks. Nothing new is most definitely better than something bad. With Mike being on this puréed diet, I’m beginning to feel a little bad for him because there’s not much variety in what he gets to eat. (Okay, so I really felt bad for him from the first time I saw one of those puréed plates. It’s definitely better than having a feeding tube go through the nose, though.) He told me the peas were nasty the other day, so I won’t order those anymore, and there are only so many combinations of carrots, green beans, broccoli, and corn a person can make. I’m thinking Lizard’s Thicket doesn’t offer puréed food on their menu, so I’m toying with the idea of getting some baby food for Mike. I don’t want him to be insulted, but he’s got to be tired of the same ol’ thing all the time. I know there are “things” that people have to purée food, but c’mon people, if you think I have one those, you just don’t know me very well at all. If it can’t be fixed in the microwave, stovetop, or oven, I’m certainly not going to know how to fix it. Heck, using the stove and oven is a stretch for me. Maybe I’ll just sneak some Gerber sweet potatoes on his plate and just not tell him where they came from!

Not Much Change

2008-04-02T12:01:00.000-04:00

There’s still not a whole lot of change for today. Mike’s hemoglobin is a little low, so he’s going to be given a unit of blood today to hopefully boost that up. His platelets are around 39,000 (normal is at least 150,000), but he’s not going to be given anymore right now; the doctor thinks Mike will regenerate them and that number will increase. (Sounds like they work sort of like starfish to me.) Mike’s on a low dose of oxygen, so the respiratory therapist decided to try taking him off of the assistance. Shortly after she left, Mike looked like he was having a hard time breathing. When I asked him if he felt like it was difficult to breathe, he said yes. So, he had about a 15 minute reprieve from the oxygen assistance.

The plan right now is to give the radiation a little more time to work and do an MRI early next week. Mike was taken off one of his antibiotics yesterday, and he’s doing fine with the lower dose of steroids thus far. His blood count has to get back up before we can start the next round of treatment. He will take the Temodar (chemotherapy) for only five days in the entire month. It will be a higher dose than what he was on earlier, so that’s why we’ve got to make doubly sure his blood levels are good. I think once we start with that we will be able to start with the Avastin as well. Mike has been talking a little bit. And by little, I mean, well, little. He answered some questions yesterday and at times had a pretty good voice with his responses. He hasn’t said a whole lot today. Sometimes he’ll give me an answer when I ask him a question, and sometimes he just looks at me like I’m stupid. Good thing I don’t suffer from chronic low self-esteem, or else I’d probably be over in the corner crying that my husband thinks I’m an idiot. And if he’s ever told any of y’all that he does think I’m stupid, well, you can just kept that to yourself. There are some things I’d just rather not know!

Nothing to Write Home About

2008-03-31T13:43:00.001-04:00

As I figured, there wasn’t much excitement over the weekend. There really isn’t much to report today, either, but I don’t want y’all to get worried since I haven’t posted since Friday. Mike’s blood count is still a little low, so that needs to increase to build up his strength. He’s eating pretty well, but he doesn’t talk to me much. He seems most alert after he sits up and eats lunch. The only change that is going to be made is that Mike’s steroids are going to be lowered from 20mg to 15mg four times daily. The doctor doesn’t want to change too much at one time. By doing things slowly, if Mike has a negative response to anything, we’ll know the cause of it.

Since there isn’t much else to report, I’ll give you a parental tip for the day. If your child isn’t fully potty trained, it’s a good idea to pack an emergency diaper and wipes. One of my sisters was planning to take Ava to see a movie yesterday. Since it was going to be Ava’s first movie, I wanted to join them, so I met them at the theaters. Towards the very end of the movie, Ava announced she had “poopy pants,” and I asked my sister for the diaper and wipes. She had neither. I won’t gross you out with all of the details, but it was nasty enough to where it was coming out the top of her diaper. Ewww!!! Luckily, I had some wipes and paper towels in my car and at least got her cleaned up for the ride home—even though she had to go sans a diaper or panties. I swear this is the type of stuff teenagers need to experience so they know just how much work a child is! My sister, by the way, claims complete innocence and says she wasn’t responsible for packing Ava for the event. Okay.

Feeding Tube Gone!

2008-03-28T10:07:00.001-04:00

The feeding tube was removed yesterday, so Mike is eating real food again. Well, that’s if you want to call it real food. All of his meals are still of the puréed variety, and the liquids continue to be thickened, but it beats the heck out of having a tube up his nose and surviving off of Jevity. Jevity is the “food” they give him through the feeding tube. It looks like chocolate milk, but I have a fleeting suspicion it tastes nothing like that. I won’t even taste test my own children’s baby food, so I’m certainly not trying that stuff; it’s not as if they’d order something different if I said it was nasty.

Anyway…there probably won’t be much to write about over the weekend unless Mike creates some sort of drama. Of course, that wouldn’t be completely uncharacteristic for him. The doctor is going to keep all of the medications the same over the weekend then on Monday start making some changes. He’s going to start lowering the dose of steroids next week since Mike is on that insanely high amount. I’m not sure what other changes will be made. He’s going to hold off on giving Mike any Temodar until his blood counts get better. The normal protocol is to take the chemotherapy for five consecutive days in the month after radiation. I’m not sure if that’s every week or just once in a month’s time.

Other than that, there’s really not much to report. Please continue to pray that Mike regains his strength and that he is able to eat well. He had a little bit of difficulty with the eggs this morning, but I think that was my fault by giving him too much. I realize it comes as a shock to you all that anything could possibly be my fault.

One more thing before I finish for today…I’d like to thank whoever left the beautiful afghan in Mike’s room. Last Friday Mike’s cousin Regina stayed with Mike for a few hours so I could spend some time with the girls. While I was gone, someone came by while Regina was on the phone. As soon as Regina finished her conversation, the woman was gone, but she left a bag with a gorgeous sage green afghan. There was no note indicating whom it was from. There was just a piece of computer paper with a Bible verse (Psalm 91:11) and a message that God sends angels to keep watch over us. Thank you, angel!

Radiation Complete

2008-03-26T11:01:00.002-04:00

Mike graduated from radiation treatment today. He even got a certificate to prove it! And since some of you were a little disappointed that Mike opted not to keep the staples in his head from the biopsy, I made the executive decision to keep the “helmet” that was used during radiation. It’s just a little souvenir. I figure Ava or Savannah can use it if one of them ever decides to take up fencing.

Mike’s blood count is okay today. Not great, but not bad. Because the chemo can have such a negative effect on it, the doctor is still holding off on giving him Temodar. Once his blood levels get back up, Mike is probably going to take the Temodar in conjunction with the Avastin, though I’m not sure exactly when that’s going to start. I would imagine that the doctor would want to do one more MRI before beginning the Avastin to make sure there is no hemorrhaging, but I’m just speculating on that. I asked the radiation personnel this morning when they normally do the follow-up MRI, and they said between four and six weeks after the last treatment. If you recall from earlier posts, radiation continues to work its magic even after the final treatment, so that’s why they wait a while.

Today should be the last day with the feeding tube. The doctor wanted to keep it in for this last day of radiation, and the plan is to remove it tomorrow morning. The echo-cardiogram (heart ultrasound) results came out fine, so Mike was taken off the perpetual heart monitor this morning. He continues to be on the oxygen, but he doesn’t have to wear the mask—it’s just the tube that sits at the base of his nose, so it’s not that big of a deal. Oh, and I think I forgot to tell you that Saturday afternoon they came in and did an ultrasound on Mike’s legs to make sure he didn’t have any blood clots. When I posted the thread for that day, I had not been told that test was going to be done. Apparently, if a blood clot develops in a certain area, it can cause problems with the lungs. Fortunately, Mike got the all-clear on that. The only thing that could be seen on the ultrasound was some fluid in the legs…that’s a heck of a lot better than finding blood clots, seeing as how a blood clot can kill you and all. Mike didn’t get physical therapy on Monday because the therapists were waiting on the results of the ultrasound. They didn’t want to move him if he had any clots. Of course, they could have just asked me, and I could have told them that nothing was found. Surely, they would have respected my professional medical report.

Over the last few weeks, Mike has pretty much stopped moving his arms and legs at all on his own. However, yesterday during physical therapy, he moved his arm by himself twice. I’ve gotten to the point now where I move his arms and legs a couple of times a day in addition to the physical therapy he gets. He has a pretty hard time holding his head up during therapy, so I’ve started stretching his neck muscles several times throughout the day.

That’s about all the excitement for the time being. Now it’s a whole lot of wait and see. Hopefully, Mike will regain a lot of strength over the next week or two since he won’t have the radiation zapping energy from him, and we’ll be able to start phase two of his treatment soon.

Making Strides

2008-03-24T11:56:00.002-04:00

It apparently was just taking Mike a little while to get over the initial shock of having Lucas blood run through his veins. I think that would very well shock anyone’s system. After a second helping of Lucas platelets last night, Mike is doing much better today. He was taken off the BIPAP machine this morning; his oxygen level actually went up after its removal. (Side note: the BIPAP machine is similar to the same sort of thing people with sleep apnea use while sleeping.) He is still receiving some oxygen, but it’s just the tube that sits at the base of his nose. By having that and not the mask, I was able to shave him today. I’m getting the whole electric razor thing down pat. He only got one little nick today—and that was on his neck. I’m sure it’s only because his blood count is lower than the average person’s, so he’s more susceptible to bleeding easily. It could in no way be a result in my lack of shaving skills.

Our regular oncologist said yesterday’s chest x-ray came out fine. Our oncologist wasn’t here this weekend, but in reviewing everything, he seems to think that Mike didn’t actually aspirate—he probably just got something stuck in his airway. Mike’s heart rate dropped a little yesterday (it was in the 50’s), so a cardiologist was called in, but he said it wasn’t a big deal; they don’t get concerned unless it drops to the 30’s or 40’s. Mike did have an echo-cardiogram (ultrasound on the heart) done today—I’m guessing that’s just for precautionary reasons. Mike will stay on the feeding tube for today, but he will probably be taken off it tomorrow. His hemoglobin is still a little low (around 8), so he’s going to get another unit of blood today. His platelet count is fine, so he doesn’t need anymore of those right now. Mike has been very alert today (and was awake most of the day yesterday), but he’s gone back to talking in whispers. Hopefully, as his strength builds back up, his voice will return. Mike did have his radiation today, so he only has two more treatments to go!

The Mask

2008-03-22T13:45:00.006-04:00

Apparently, Mike has aspirated something, so he’s not doing so great right now. A lung x-ray was conducted during the night, and something was found in Mike’s lungs. His oxygen level dropped to 83 overnight, so when I came in this morning, he had on an oxygen mask, not just the tube that sits in his nose. (The mask helped his oxygen get up to 93.) A lung doctor came in to look at him and ordered that Mike be put on a BIPAP machine for at least 24 hours; this forces pressure into the lungs and helps oxygenate him. He’ll also be put on some antibiotics. If all of this doesn’t help, they may have to fish out whatever it is in Mike’s lungs. Because of the mask Mike now has to wear and the risk of further aspiration, he is going to be put on a feeding tube. I’m not sure how long he’ll have to stay on that, but since he was eating well otherwise, it will probably only be until they make sure his lungs are clear. Mike was retaining an insane amount of fluids, so he was given some Lasix which helped that tremendously. (When I left last night, he looked pregnant—not so much anymore!)

Mike has continued to not receive the chemotherapy; tomorrow will be two weeks since he had his last dose of Temodar. The radiation he missed on Tuesday will be tacked on, so Mike has three treatments left. If he doesn’t skip any more treatments, he will be finished on Wednesday. Mike’s blood counts have still been a bit low, so he received blood and platelets yesterday and will receive another round of platelets tomorrow. My sisters Cindy and Karen donated their platelets for Mike, so he now officially has Lucas blood in him. We’ll see what kind of magic that works. He had some sort of infection in his blood the other day, so his regular antibiotics were changed.

It’s probably not a good idea to visit the hospital today or tomorrow. The mask Mike is wearing covers his nose and mouth, so he is unable to talk at all right now. (He’s had selective speaking before…yesterday morning he talked to me pretty well, but the three days before that, he didn’t say much. I’m sure he hasn’t just been ignoring me. What man would ever want to ignore his wife?) I hope you all have a wonderful Easter; I hear the Easter Bunny has removed all calories from chocolate this year, so eat up! For those of you on spring break this week, enjoy some rest and relaxation; most of you who teach in the Columbia area will need all the R&R you can get—when returning to school next week, it’ll be nine solid weeks with no days off! Yikes!

It’s with great sadness that I share with you Ron Ridgeway, the gentleman with a glioblastoma I told you about in an earlier post, has passed away. I haven’t talked with his mother since she told me about contacting Duke, but I read of his passing in the newspaper. Please continue to pray for his mother as well as the rest of his family during this most difficult time for them.

A Little Better

2008-03-19T15:07:00.004-04:00

Mike is doing a little better today. He was awake when I arrived this morning and ate just about all of his breakfast. (Despite forgoing breakfast yesterday, he did eat his lunch and dinner.) I just finished feeding him lunch, and that only took about 25 minutes—not too bad considering he had a meat, two veggies, fruit, pudding, and yogurt. I can give him about four or five bites of food between liquids, so it’s not nearly as torturous to feed him as it was for a while. He hasn't said much, but I'm getting used to that these days.

The lung x-ray showed a little something on his lower left lung. It’s probably pneumonia, but it can be treated with antibiotics and the breathing treatments he’s getting every four hours. There doesn’t seem to be much worry about that. He hasn’t been coughing much today, and the respiratory therapist said she thought his lungs sounded a little better. He’s still on the oxygen. I suspect he’ll be on that until his lungs are all clear. I think the doctor had the CT scan done yesterday to make sure Mike’s brain didn’t start hemorrhaging; the report shows that it has not, so that’s positive. Hemorrhaging would not be a good thing because Mike would not be able to take the Avastin if that occurs. I asked the doctor how long after radiation Mike would be able to begin taking the Avastin, and he said probably a week or two. The CT report mentioned having a follow up (i.e. MRI) because “Mass effect on the ventricular system appears just slightly more prominent than on the comparison of March 6, 2008, particularly the third ventricle which on today’s exam is measured at approximately 8.5mm vs 6.5mm on the prior exam.” Whatever that means. (Listen, don’t set your expectations for me too high and expect me to understand every little report. I don’t have my advanced medical degree. Yet.) The doctor said he isn’t very concerned about that, and since Mike was up and eating fine today, he’s not going to have the MRI done. He seems to get more concerned when Mike isn’t acting normal (by normal I mean recent activity normal)—he wasn’t so “normal” yesterday and the night before that, so that’s why he had the scan done.

Mike still isn’t getting the chemotherapy because his blood counts are so low. He will be given some more platelets this afternoon. This is Day 10 with no Temodar. (As a side note, I was looking over my stuff from Duke today and realized Temodar is the chemotherapy that is used in their trial along with the Avastin. I’m not sure if Mike will continue with the Temodar once he starts the Avastin here.) Mike has been making those noises again today. He started with it this morning and didn’t stop until lunch. I got a little bit of a hiatus, but he has started moaning again. I swear you’d think there is a goat in the room. When he’s doing that, I keep the door shut so other patients don’t freak out and think there are wild animals running around the 8th floor.

Now, don’t go getting all excited about what I’m writing next—though it would be easy to do so—because I told you before that measurements on CT scans aren’t as accurate as those done with an MRI. But…according to the scan done yesterday, the tumor now measures 3.4cm x 3.9cm. You can scroll down to the March 13 post to see previous measurements. Sorry, but I don’t have any pictures of the scans to post. I’m only given written reports of them. Maybe we’re lucky and that is an exact measurement of the tumor. We can pray that’s accurate, right? Hey, look what prayer has done for us thus far!

News Flash

2008-03-18T11:16:00.002-04:00

No radiation today. Mike may or may not make up this session; the doctor will have to decide. Usually an extra treatment is tacked on at the end.

Antibiotics have been changed.

A CT Scan will be done today.

Mike is still sleeping and hasn't eaten anything since dinner last night.

Not-So-Great Day

2008-03-18T10:01:00.001-04:00

Mike is not doing very well thus far this morning. Yesterday he kept making a moaning/whining type of noise all day. He was given a sedative around 4:00 and that helped it, but it also knocked him out! I could hardly wake him up to eat his dinner, but he ended up eating all of it. After dinner he started making those noises again; he was given another dose of the sedative, but it didn’t stop the noises even though he was sleeping. His oxygen level got a little low, so he was put back on oxygen.

This morning when I came in, I discovered he had been put on a heart monitor. His blood count continues to be low, so he is going to be given blood and platelets today. I haven’t been able to get him to wake up and eat this morning. (Mike not eating? You know something’s askew.) Normally when I move the bed to a 90 degree angle, he awakens and is ready to eat. I had a difficult time just getting him to take his medicine. He still has that congestive-sounding cough that has been lingering around for a week or so. He was give yet another chest x-ray last night, and we’re still waiting on those results. I’m not sure if he’s going to have his radiation treatment today. They came for him this morning, but the doctor wanted to see how he did waking up before sending him for treatment. Obviously, that’s not going so well, so I don’t know whether or not the radiation will be nixed. Mike may end up having another CT scan or MRI today to see if that unfolds the mystery of this sudden change. I tell ya, he’s just always got to be a problem child, doesn’t he?

More of the Same

2008-03-16T20:15:00.001-04:00

I haven’t updated the blog in a couple of days because there really hasn’t been a whole lot to post. Mike was given some platelets on Friday, but his count was down again today. His white blood count continues to be low, so he is still not receiving Temodar. He hasn’t had the chemotherapy since last Sunday, but he has been continuing with radiation on weekdays. He has six radiation treatments left. Please pray for Mike’s blood levels to return to a more normal level so he can take the Temodar without any risks; it will only be given as long as he has radiation, so the window to take it ends next Tuesday.

Mike seems to be eating a little better. It only took me about 35 minutes to feed him dinner tonight. He’s still on the puréed food (I know you all are jealous), but I can now give him a few bites before giving him any liquids. I was having to give him a half spoon of food alternated with a half spoon of liquid. Eating that way was horrible; his meal would get ice cold before he could finish with it. Hopefully, he’ll continue to get better with this and be able to switch back to the mechanical soft foods before too long.

On the good news front, Mike and I won’t be going into the poor house this month. Since have given birth to two children in the last three years, I was running out of days to take at work in order to stay at the hospital with Mike. I applied to my district’s Sick Leave Bank for additional days. I was a little nervous about getting approved because the only real rule is that it has to be something catastrophic, but the four people I have known to apply in the past have been denied. On Friday I received a letter from the district letting me know I have been approved for additional leave. Yahoo!

Holy Mackerel, Batman!

2008-03-13T13:43:00.003-04:00

Apparently working overtime isn’t in some people’s makeup because I did not get any MRI results last night. As a matter of fact, I called the hospital just before I went to sleep at 11:30, and they still weren’t in. Anyhoo, I got the results this morning and they are looking good! Just to give you a review, the measurement I first gave you all in January came from the CT scan Mike had on January 2; those measurements were 4.5 cm x 4.7 cm. An MRI, which is more accurate, was administered on January 3, and showed a measurement of 5.5cm x 4.3cm. The MRI done by Duke on February 4 (when I was subsequently told Mike only had “days” to live) showed a measurement of 5.7cm x 5.2cm with new hemorrhaging. Now for the results of yesterday’s MRI (drum roll, please)…the tumor now measures 4.8cm x 4.0 cm, and there has been no additional hemorrhaging. Yes, that does indicate that the tumor is smaller than when Mike was first admitted to the hospital in January. For those of you who prefer lists instead of numbers all jumbled up in paragraph form, here’s a recap of tests and measurements:

CT Scan (January 2): 4.5cm x 4.7cm
MRI (January 3): 5.5cm x 4.3 cm
MRI (February 4): 5.7cm x 5.2cm, additional hemorrhaging
MRI (March 12): 4.8cm x 4.0cm, no hemorrhaging

Now that the tumor is smaller than the size when Mike was actually functioning on his own every day, it seems to me that Mike is just taking full advantage of all of this pampering he’s been getting from me. I’m going to have to toughen up on him a little more. Mike’s just going to have to get off his duff here pretty soon and start doing something productive…heck, I think he could even handle selling some of those Chick-fil-A’s and ice cold waters.

Mike’s platelets are higher than yesterday (39,000), but they’re still too low to take the Temodar, so he’s going a fourth consecutive day with no chemotherapy. With the results of the latest MRI, our oncologist still doesn’t understand why Mike is having difficulty with chewing. The latest theory from speech therapy (since it’s not from the tumor growing) is that Mike is fighting the tumor, so it’s making his body weak.

The mother I told you about the other day called Duke about her son. They called her back after she left a message, and she talked with Dr. Friedman. She apprised him of what was going on with her son, Ron, and asked the doctor if he could help. Dr. Friedman told her he could and just needed for her doctor to call him. Please continue to pray for Ron and his mother and that they will be able to get to Duke soon.

I have to share one sweet story before I sign off for today. Yesterday Ava and Savannah came to visit Mike. Unfortunately, Savannah developed a runny nose right when they got to the hospital, so she couldn’t come in the room. As Ava was sitting on the bed with Mike watching cartoons, she looked over to me and said, “I love him.” I told her she needed to tell him that, so she looked up at Mike and said, “I love him.”

An MRI is on the Brink

2008-03-12T08:46:00.019-04:00

For the third day in a row, Mike’s platelets are low, so he will not have his chemotherapy again today. It’s actually lower today than it has been the last two days. (Today he’s at 30,000; the previous two days he was at 50,000.) Though platelets can be given to him, no plans are in the works for that right now. His white blood count is a bit low as well, so if you have the slightest cold or sickness, please do not stop by the hospital; Mike’s immune system is very low right now.

Mike had his swallow study done yesterday, and it is officially going to take forever to feed him each of his meals. (I looked up “forever” at dictionary.com and it had a picture of Mike being fed. I'm not sure how they got the advance photo.) The food still has to be puréed, and he can only have half-teaspoon bites. Each bite must be alternated with a liquid. The liquid has to be of the nectar-thick variety (which he has been having since he came off the feeding tube) and has to be given to him by spoon—he is not permitted to use a straw. I asked the speech therapist why he would have this change since he was eating so very, very well before. She said the tumor causes it as it grows. The brain tells us to swallow, and the tumor is causing his brain not to tell him that; she said it’s not uncommon. What?!? Excuse me, did you just say it’s growing??? I thought they were supposed to be shrinking the darn thing. Obviously, she doesn’t have any proof of any growth. The doctor did say that this whole swallowing thing is throwing him for a bit of a loop, though, because the CT scans didn’t show any problems, and otherwise he seems to be doing fairly well considering he has this enormous mass invading his brain. So, Mike is going to have an MRI today since it gives a more detailed picture of what’s going on (a 3D version instead of just 2D).

Yesterday I learned that the radiation department is usually closed on Good Friday, so Mike won’t have radiation that day. That means he won’t get his last treatment until Tuesday, March 25. After his 25th treatment (which will be this coming up Monday), they will redesign another plan for how they will administer the radiation. I'm hoping that means that the tumor is shrinking so they have to readjust where the beams are going in. I guess I’ll find out if it's shrinking when he has the MRI today. The radiation oncologist said Mike will lose a greater amount of hair when he begins the new round; he was actually a bit surprised that Mike hasn't lost more hair than he has already.

One other thing…when Mike finished his radiation yesterday and we were about to head back up to his room, a lady stopped me and asked if I was Mrs. Starnes. I’m not sure how she knew about Mike (is he gaining celebrity status?!), but she knew he has a tumor and wanted to talk to me about it (maybe she’s heard about all of my medical expertise). She had asked some hospital personnel about me and Mike, but they couldn’t tell her anything because of the HIPAA laws. Her son, who is in his fifties, has been diagnosed with a glioblastoma as well and she is terribly upset. In addition to Mike, please pray for the strength of this mother and for improvements in her son; his name is Ron Ridgeway.

I had another lady stop me yesterday afternoon and ask me if I was "the coach's wife." I'm telling ya, you just never know who you're going to run into...that's exactly why you've always got to have your A game on! :-)

Monday Mania!

2008-03-10T22:36:00.007-04:00

Mike had a great day on Sunday; perhaps it was from all of the rest he was able to get on Saturday. (Or maybe it was all of the Q.T. he got from his wife.) He sat up and talked much of the day. He did get a urinary tract infection over the weekend, so his antibiotics were changed. His platelet count was also pretty low; as a result, he was not given chemotherapy today. It is not uncommon for this to occur; in fact, the doctor said it is more unusual for a person to go the entire 42 days of treatment without skipping a dose or two of Temodar. He will not “make up” the dose he missed—his last chemotherapy will be taken on his last day of radiation in two weeks.

Even though Mike’s food is now puréed, he seems to be having a little bit of a difficult time eating. He looked like he was choking at times and said he felt like he was choking as well. He is having another swallow study done on Tuesday. He’s also been having a hard time breathing after eating, so I’ve had respiratory therapy come in to do breathing treatments after his last few meals. This afternoon he began coughing a good bit and had an even harder time breathing. In addition to the breathing treatment, the respiratory therapist suctioned some mucus from his lungs a couple of times. (Hope you’re not eating as you’re reading this!) This evening Mike had an x-ray to check his lungs for infection then was given some Lasix. I was a little worried that something was seriously wrong, but I just got the report back and all is clear. Since having the Lasix, Mike hasn’t been coughing and his breathing is much better. All the evening drama is the reason for the late post tonight. Now that I know everything is okay, I can go home and get a little sleep. Hopefully, there won’t be another wreck on I-26 tomorrow like there was this morning, and I can get to the hospital in a timely fashion. Those of you who drive towards town from the Irmo/Chapin area in the mornings know my pain!

A Must Read

2008-03-08T18:53:00.003-05:00

Phillip and Jennifer Rockefeller sent a copy of the true story 90 Minutes in Heaven by Don Piper for Mike’s birthday. I read the entire book today, and it was fantastic! I realize I’m probably in gross violation of laws and may very well end up in Copyright Jail (where I’m certain I’ll see many of you other teachers), but I’ve written the book’s prologue below. What can I say? I’m a literacy coach and know the importance of hooking a reader from the get-go. I will be shocked if reading the excerpt below doesn’t get you interested in reading the book in its entirety. It has sold over two million copies, and after reading the whole book, I really don’t think the author would mind me sharing the prologue with you all.

I died on January 18, 1989.

Paramedics reached the scene of the accident within minutes. They found no pulse and declared me dead. They covered me with a tarp so that onlookers wouldn’t stare at me while they attended to the injuries of others. I was completely unaware of the paramedics or anyone else around me.

Immediately after I died, I went straight to heaven.

While I was in heaven, a Baptist preacher came on the accident scene. Even though he knew I was dead, he rushed to my lifeless body and prayed for me. Despite the scoffing of the Emergency Medical Technicians (EMTs), he refused to stop praying.

At least ninety minutes after the EMTs pronounced me dead, God answered that man’s prayers.

I returned to earth.

This is my story.

It’s been pretty quiet around the hospital today. Mike has slept most of the day, and I got in a good bit of shut-eye myself. There really haven’t been any big changes other than we altered Mike’s meals to being puréed since he’s been having such a difficult time chewing recently. Let me know if you would like some pulverized peas and carrots, and I’ll see about having a couple of servings sent to ya. On the bright side, Mike can now have brocolli from the cafeteria. Physical therapy has been going okay—Mike sat up for about 40 minutes yesterday, and he’s holding his head up much better—but he is still a long way from getting up and moving around on his own.

Oh, and I got a new phone, so I’m back to the same number I’ve been using for the past couple of months. So if you need me, call me on that number. Because the other cell wouldn’t even turn on, they couldn’t transfer my phone book. As a result, I’ve lost some of your numbers because that’s the only place I had a record of them. Hopefully, I won’t have another faux pas with this Nokia!

Duke Calls

2008-03-07T10:56:00.000-05:00

Since Mike didn’t seem to be getting a whole lot better with his responses to questions and his eating has slowed down, he had yet another CT scan last night. I was afraid that it was going to show he was hemorrhaging or the swelling had grown, but the report read that things are the same as they were with his last scan on Saturday. The measurement was the exact same (6.8 centimeters including the swelling). It is taking what feels like forever to feed Mike. Last night it took him an hour to eat, and he only had a meat, two vegetables, and applesauce. It’s clearly taking a lot of effort for him to eat lately, so he hasn’t been eating quite as much. Anything soft (yogurt, mashed potatoes, etc.) goes down pretty quickly, but if he has to chew, it takes quite a while.

Dr. Desjardins from Duke called our doctor back today. (She’s the doctor we saw when we went for our regular clinical visit and was wonderful.) She reviewed the actual slides of Mike’s CT scan and was very pleased with how well he is doing. She thinks he is an excellent candidate for the Avastin, but she said it’s too risky for him to take it while he’s getting the radiation. Mike’s last radiation treatment is scheduled for March 24, but the radiation still has an effect even after the treatment is finished, so I’m not sure exactly when he will begin taking it. Avastin is taken only once every two or three weeks (depending on what the doctors decide is best). When we were at Duke, Dr. Desjardins told us it begins shrinking the tumor within 24 hours, though patients usually can’t tell a difference in how they feel for at least a week or two. In case you don’t remember, in 65% percent of patients who have taken Avastin, the tumor decreased in size by half. The other 35% had their tumors shrink by 20%-25%.

Thursday Update

2008-03-06T12:56:00.003-05:00

I talked with the doctor this morning, and he went ahead and ordered another dose of the Mannitol for Mike today. He said the swelling in Mike’s hands is from the steroids; his face may become puffy as well. His blood pressure and heart rate are now under control. When I asked Mike my name this morning, he said some crazy name, but when I asked him the name of his wife, he gave that same answer. I’ve asked him my name since then, but he doesn’t give a response. When I held up pictures of the girls, he was able to tell me their names and that they’re his daughters, so that was good. The doctor said I shouldn’t be too concerned about Mike’s dip because it is bound to happen. Mike did eat all of his breakfast, but it felt like it took forever for him to eat. There has been no word from Duke yet; the doctor is going to call up there today to try and nudge them a little. I will certainly post whenever I find out something.

There was no magic with my cell phone this morning…it actually had a setback and wouldn’t turn on at all again!

Thanks once again for all of your prayers. Please continue to pray for Mike and that this is just a minor setback he is having as well as that we’ll get the go ahead to take the Avastin from the doctors at Duke.

Birthday Boy

2008-03-05T22:41:00.003-05:00

Wow!!! I wasn’t expecting such an overwhelming response for the birthday wishes and stories. Thank you so much for sharing! I knew some of the tales, but I learned some new “war stories” as well. I finished reading Mike all of the posts today—there were so many I couldn’t get through them yesterday! Mike had a good birthday. The girls finally got over the “crud” and were able to come for a visit; Ava sat on the bed with Mike for quite some time. Thanks to Fran, Regina, Cindy, Harry, and my parents, Mike ended up with quite a feast for lunch and dinner. He got a break from the hospital food and was able to dine on homemade barbeque, broccoli and cheese soup, beans, steamed broccoli, and banana pudding. And of course, there was birthday cake. There was so much food, Mike’s Uncle Gene had to bring me a cooler today so we wouldn’t take up too much room in the refrigerator. (It plugs into an outlet, so I don't even have to use any ice!) They only allow items to be kept in the fridge for two days around here, and there’s no way all that food would be gone by the Thursday. I think Mike is becoming a favorite on the 8th floor—the nurses and staff brought him a beautiful arrangement of tulips for his big day!

Mike is over half way through with his radiation and chemotherapy. He has thirteen treatments left. His heart rate and blood pressure got to be pretty high today, and he ended up having an EKG to make sure everything was okay. Things didn’t look too bad, but they did give him some sort of patch to help bring them down to a more normal level. Other than that, Mike was doing pretty well today, but he didn’t seem to be doing as well after waking him for dinner. He was having some trouble eating at dinner, at times it was taking him longer than normal to chew, and he didn’t eat as much as he normally does. Having a good appetite is one of the things the doctor has been keeping an eye on. His breathing was a little shallow, so respiratory therapy came in to do a breathing treatment. I quizzed him a little later, and he didn’t know who I was. That’s one he hasn’t gotten wrong since he was out of it from his biopsy. The on-call doctor was called and Mike is getting another dose of the Mannitol tonight. I’ll talk with our regular doctor about everything in the morning.

The doctors at Duke received copies of Mike’s latest CT scan reports, but they wanted to review the film for themselves. It was Fed-Exed to them yesterday, so hopefully, we’ll have their feedback by the end of the week about the possibility of starting with the Avastin.

Here’s your comic relief for today (at my expense): This afternoon Mike had that look that people have when they’re going to vomit, so I rushed in the bathroom to grab one of the plastic pink tubs to use to prevent him from getting it all over himself. I thought I heard something fall in the toilet, but I didn’t pay too much attention to it because I was trying to get back to Mike. I moved the bed to a 90 degree angle, and it ended up Mike only had to belch. (And it was quite a belch!) A few minutes later, I went back to see what fell in the toilet, and it was my cell phone. Arrggh!!! So, if you’ve left me message since about noon on Wednesday, I haven’t gotten it. I’ll be using my old phone for the next day or two until I can get to SunCom to figure out what to do with my newer one. On the bright side, the phone would at least turn on this evening—that’s more than it was doing this afternoon. It now gives me the message to insert the SIM card. Maybe it’ll just magically work in the morning. A girl can dream, can’t she?!

Share a Story

2008-03-03T09:10:00.003-05:00

Mike’s birthday is tomorrow, and I’ve come up with an idea. (I hope this one turns out better than my Lizard’s Thicket debacle on Saturday night.) Since it’s obviously not feasible to have a big birthday bash—if we were in the Marriot part of the hospital, I might be able to pull it off, but there’s just not enough room on the Motel 6 end—I thought you all could send some virtual birthday wishes to Mike through the blog, and I will read them to him tomorrow. Those of you who know Mike could maybe share a favorite memory or something you’ve learned from him. (You ATO guys be careful in your stories—our children will read this one day!) This will also be a great way for those of you who don’t personally know Mike to learn a little more about him.

Just to get the ball rolling, I’ll share a little story myself. When Mike and I became engaged in July of 2000, he hid the ring and made me hunt for it. We had already talked about going to Jamaica on our honeymoon, so he decided that the tier of room we stayed in would be determined by how long it took me to find the ring. Every 15 minutes that passed would constitute a drop in quality. Mike was enjoying my suffering (and saving money as the minutes passed), but after 25 minutes I gave up because I knew with him that I would never find the prize. The depressing part is that I was darn close to finding it in the first five minutes. The problem was I thought he would at least have the ring in a box, but he didn’t. It was hidden in his suit pocket hanging in the closet. Believe or not, I did look there! On the bright side, Mike decided not to skimp on the honeymoon. Being one who does not like to accrue any debt, he actually delivered telephone books to finance our excursion.

Now it’s your turn! If you’re writing something that’s more than a sentence or two, here’s a helpful hint: type your writing in a Word document then copy and paste it to the Blogger comment box. That way if the comment disappears, you still have it in Word and can try again without having to type everything over.I’ve had a couple of experiences of typing in Blogger then had it vanish into cyberspace once I clicked “publish.” I’m telling ya, it’s a depressing feeling to have your composition evaporate. You don't have to share a story...you can just send birthday wishes if you want.

Lung Caper

2008-03-02T20:40:00.004-05:00

I try to get a little more sleep on the weekends since the doctors don’t come in at the crack of dawn, Mike doesn’t have radiation, and I don’t have to fight the traffic going through Malfunction Junction. I guess since I came in a little later yesterday, Mike was going to make sure I stayed later as well. He ended up getting his chemotherapy late. He’s supposed to get it between 4:00 and 5:00, but he didn’t get it until 5:40. (At 5:00 I called the front desk to remind them he needs it by 5:15.) As I’ve mentioned before, this creates a problem with dinner because Mike can’t eat for two hours afterwards and the cafeteria closes at 7:00. Sure, there’s a microwave on the floor, but who wants reheated hospital food??? So I had the brilliant idea to get him some Lizard’s Thicket. After dinner Mike was coughing pretty badly and breathing hard. When the nurse came in to check him, she heard something a little odd in his lower right lung. Because he seemed to be breathing so hard, she went ahead and hooked him up to the oxygen. This seemed to help his breathing, but they went ahead and did an x-ray on his chest. There was some concern that perhaps he had swallowed something wrong and it had gotten into his lungs, which could cause pneumonia. To protect the innocent, I won’t mention the name of the person who fed Mike dinner since she was feeding him so that I could go downstairs and spend a little time with Ava. But in case it’s getting the best of you, her name rhymes with flair. My brilliant idea was beginning to not seem so brilliant at that point. I mean Lizard’s Thicket is good and all, but it’s not literally to die for. Luckily, the x-ray came back fine and showed nothing in his lungs. Whew! "Flair" and I ended up staying at the hospital until 12:30 last night waiting on the results and making sure everything was okay.

I did talk with the on-call doctor today about the CT scan. Not including the swelling, the tumor is pretty much the same as it was last weekend. She said that a CT scan is just a two-dimensional reading and isn’t necessarily accurate to the millimeter. Transverse dimension means from left to right, and AP dimension means from front to back. She also said that how we physically see Mike doing is a better indicator of his status than the scans.

Other than that, Mike’s pretty much been the same today. If he’s awake, he’ll sit up and talk with you. Just don’t anticipate any factual information from him. This evening he said we have been married a hundred years. Surely nearly seven years with me doesn’t feel like one hundred!

CT Scan

2008-03-01T14:26:00.002-05:00

When I came in this morning, Mike’s eyes seemed okay, but he was still inaccurate with answers to questions. He initially said we have twelve children (Yikes!!! How could we ever afford that? Two cost enough as it is!) When I told him we had two, he couldn’t tell me the names of our girls, but when I held up pictures of them, he could say their names. The on-call doctor was present when I was giving Mike his quiz. Since he didn’t make an A+, she went ahead and ordered another CT scan as well as two doses of the Mannitol for today. Mike had his CT scan shortly after 11:00, and the doctor brought the report to me a couple of hours later. She said that the tumor was stable, so we were just going to keep on doing what we have been. After she left, I started looking at the report in more detail, and it doesn’t look so great to me. It does state that the tumor is “largely stable” and there is no additional hemorrhaging, but the mass—including the swelling—has a “maximal transverse dimension of approximately 6.8 cm and a maximal AP dimension of approximately 5.3 cm.” I don’t know what exactly “maximal transverse” and “AP” dimensions mean; when I went to ask the doctor for clarification, she had already left. The last report just used the term “diameter.” I’m not sure just what the difference is or if there is one; I’ll ask her about it in the morning. It’s been nearly four hours since the doctor put in the order for the Mannitol, and it has yet to make it up here from pharmacy. I realize the pharmacy has to serve the entire hospital, but I don’t think I’ll ever understand why it takes so long to get medication around here. It’s a hospital, for cryin’ out loud!

Just When You Think You're Out of the Woods...

2008-02-29T17:14:00.001-05:00

Our schedule got a little off today because Mike had his radiation treatment later than normal. Since he didn’t finish his breakfast until after noon, I didn’t wake him up to feed him until 3:20. Mike had that “look” in his eyes again that he gets when his brain swells. I asked him some questions and got the wrong answers. (Did you know that I work at Lexington Medical Center? Maybe I shouldn’t discount his answer on that one—I probably should be receiving a paycheck from this place!) Of course, I immediately called for the doctor…I didn’t want to wait it out and have to deal with the on-call doctor again over the weekend. The doctor ordered an immediate dose of Mannitol—Mike was given that to aid with the swelling on Sunday, and it seemed to help. The doctor said that all of the radiation can cause swelling, so since it’s the end of the week and Mike has had five consecutive treatments, that may be the cause of the problem. If I don’t see a noticeable change by tomorrow morning, another CT scan is going to be done. I’ll write a brief post tomorrow to let you know how he’s doing.

Mike’s platelet count is still fine, and all other blood work has come back okay. As usual, there will be no radiation over the weekend, but he will continue with the chemotherapy. He is starting to lose a good bit of hair…there’s more and more of it on his pillow. It’s almost getting as bad as woman’s after having a baby. (Those of you who have given birth know what I’m talking about. Sometimes I wonder how I have any hair on my head with all the strands I shed!) He’s not close to being Kojak yet, but he is getting closer to a Dr. Phil look.

My girlfriend is reprimanding me for not putting up another post about the Mike bracelets (or POP—Power of Prayer—bracelets as my father has renamed them!). I’m not going to mention any names, but hers rhymes with malison. So…if you would like a bracelet, just send a self-addressed stamped envelope to the address at the bottom of this thread. For those of you new to this blog, the bracelets are meant to serve as a little reminder to think of and pray for Mike throughout the day. It is prayer that has gotten us this far. I crocheted all of the bracelets myself during my extended stay at the hospital. (See the February thread entitled “Mike Bracelets” for more details on how the bracelet idea came about.) For you Richland Northeast folks (both faculty and students), you can just swing by Mrs. Bush’s room if you want one. She’s in room C-204, but heed this warning: class time is sacred for her, so I suggest you stop by during lunch if you want one. Interrupting class would not be a good idea. Anyone at Airport can get one from Mrs. Klein. For everyone else, here’s the address:

Mike Bracelet
600 Woodrow Street
Unit G
Columbia, SC 29205

Brief Update

2008-02-27T17:22:00.005-05:00

Mike seems to finally be bouncing back from the swelling he had over the weekend. Late yesterday he started talking more, and he continued with that today. He’s been having a pretty strong voice when he talks as well; the whispers are fewer and fewer. There have been plenty of smarty-pants remarks spewing from his mouth, so you know he’s definitely doing better. Of course, if he’s gets too smart with me, I threaten to not feed him his next meal, so he straightens up rather quickly. The prospect of starvation is a pretty good motivator.

We had a slight scare this morning. The blood report indicated that Mike’s platelet count dropped dramatically from two days ago. The doctor suspected it was a mistake by the path department and ordered another test today. Luckily, everything is normal. If it had been too high, the doctor was not going to give him the chemotherapy today. He has this test done every other day, so it is monitored regularly. The radiation continues to go well; he had his twelfth treatment today. Thirty more to go.

Some of you have asked about visiting Mike, and that is perfectly fine. There really is no predictor of a good time to stop by—it’s kind of a take-your-chances sort of thing. Sometimes he’s up and talking and other times he’s a sleepy head. He doesn’t have a pattern he follows, so I can’t tell you that one particular part of the day is better than another. If you do visit, be aware that he is still not back to regular Mike, but he does know who comes by and appreciates the visits.

Our oncologist sent a copy of the CT scan to Duke, but he has not talked to the doctors up there about the Avastin yet. He hopes to talk with them by early next week.

That’s about it. Sorry I don’t have anything more exciting to write, but at least there haven’t been any setbacks in the last couple of days!

Prayers Are Working (As If We Didn't Already Know That!)

2008-02-25T10:37:00.001-05:00

In case you’re wondering, the on-call doctor never came by Saturday night. Good thing I have that street-smart medical degree, eh? After Mike still appeared not to be improving Saturday evening, I insisted the nurse call the on-call doctor to see if his steroids needed to be increased some more. After the nurse talked with the doctor, Mike was given five more milligrams on the spot then his regular dose was increased to 20mg. When the on-call doctor did come by on Sunday for rounds, I shared my concerns that Mike has not been following textbook protocol as far as how quickly he can decline. The doctor ordered a drug called Mannitol, another agent to help with the swelling. He also ordered a CT scan and MRI to check for hemorrhaging. They don’t do MRI’s on Sundays, so that’s why he was having the CT Scan—they do do those on the weekends in the emergency room. Mike continued to give some crazy answers to questions throughout the day, but he got better as the day progressed.

This morning I talked with our regular oncologist. He is going to keep Mike on the high steroids dose until the radiation treatment is finished next month. Based on the CT scan results, Mike is NOT going to have an MRI today. The scan is compared to the last one he had here on January 9. The bleeding Mike was having in the biopsy area in January has “nearly completely resolved” and there is “no new intratumoral hemorrhage.” That is great news because Mike did have additional bleeding while we were at Duke, so there evidently is no sign of the hemorrhaging Mike was having earlier this month. (If you remember, on February 5, I was told the tumor had grown, Mike was hemorrhaging and there was nothing else the doctors could do…it would just be a matter of days.) Our doctor is going to send the report to Duke to see what they think about starting the Avastin. Also on the great news front…Mike’s February 11 MRI showed Mike’s tumor had a diameter of 5.6 centimeters. Yesterday’s scan showed the diameter at 5 centimeters. I’m no rocket scientist, but that tells me the tumor has shrunk six millimeters since Mike began radiation and chemotherapy nearly two weeks ago! Keep the prayers a goin’...5 centimeters is still bigger than the tumor was when Mike first went to the hospital in January, so we’ve still got a long way to go. I am, though, extremely encouraged by how well this current treatment is working.

Saturday Swelling

2008-02-23T17:35:00.003-05:00

It appears that Mike’s brain has started swelling again. I suspected it was last night when he wouldn’t respond to simple questions that just required him to make a choice. (i.e. “Do you want to eat the pudding or not?”) The nurse assured me it was just because he had a double dose of morphine that day, so he was exceptionally tired.

When I came in this morning, he was talking pretty well; he was given some morphine around 11:30 and fell asleep shortly thereafter. I woke him up at 2:20 to eat lunch and could tell he was not right. Both of his eyes were not focused straight ahead, and he couldn’t answer some simple questions. He knew what year it was and my name, but he answered “2008” for a few other questions as well; this is something he did before when he was having some swelling occur. (Your vocabulary lesson for the day…that is called perseverating—repeating the same thing over and over.) I called the front desk and asked for a nurse to come to the room. After more questions and incorrect answers (Did you know we have 10 children?), I called the front desk again and told them to go ahead to page the doctor because I knew we would need some more steroids. After 19 minutes passed and no drugs had been administered, I was giving them two more minutes until I was going to have to get a little ugly. And you wouldn’t like me when I’m angry. (Can you name that television show?!?) Luckily, the nurse came by and said the doctor on call (not our regular oncologist) was on his way to the hospital and was going to come to our room first when he arrived. I really didn’t want to get nasty, but after seeing how rapidly Mike declined when we were at Duke that first day, I decided I would never let trying to be nice win out over what I think was needed medically. A short while later, the nurse came in to give Mike 4mg of steroids and said the on-call doctor ordered for him to go back to the increased dosage he was on earlier, though she’s not sure if that’s 15mg or 20mg.

Mike was able to sit up and talk after he ate lunch. There were some visitors in the room and he would make comments every now and then. After all the visitors left, I began to do another neuro check on Mike. (I do think I have this medical skill down pat!) He was still giving crazy answers to questions, but his responses were providing a little comic relief. I asked him his profession, and he told me he was a scavenger. When I asked what he scavenged, he said, "Women." Did you know that the state pays for such things? Mike is now sleeping, and I am still—nearly three hours later—waiting for the on-call doctor to stop by the room to talk with him about everything. I guess maybe he went to the beach for the day so that’s the cause for the delay in his arrival? I’ll let you know if anything else major happens.

Still Doing Pretty Well

2008-02-22T17:32:00.006-05:00

After what I did for Mike yesterday, I think I’m going to have to officially toss my name in the hat for the Wife of the Year award. I flossed his teeth. I now have a new-found respect for dental hygienists. I guess flossing sets the stage for an overall good day because Mike had a pretty good one yesterday. Mike’s head control is getting better, though it’s far from being perfect. For the past couple of days I’ve been making him turn his head to reach the food as I’m feeding him. So, if he wants to chow down, he has to turn his head towards me, and y’all all know he’s not going to say the heck with eating! It apparently is helping because the physical therapist commented on how much better his head is moving. Please pray for Mike to continue to get better with his body movements. With as much assistance as he has to have now, I don’t see how he’ll be getting around on his own anytime in the near future. I know he’d feel a whole lot better if he could move around and stretch more. He did sit upright in his bed yesterday from about 2:30 until 9:00; he was awake the entire time. (By upright I mean the bed was set at a 90 degree angle.) His voice comes and goes, but when he’s awake, he knows what is being said. The doctor went ahead and lowered his dose of steroids to 10mg four times a day since he seems not to be having any swelling.

Mike didn’t go to his radiation treatment today as early as he usually does, so that threw off our schedule for the day. I had a great system going with Mike’s meals, and it all went awry. The radiation folks came by to pick him up at the usual time, but the doctor had not seen Mike yet, so they didn’t want to take him. I figured they would swing back by within a half-hour, but it was almost two hours before they returned. That’s not a huge deal, but it makes it a little difficult to order meals when I don’t know when he’s going to be out of the room. I don’t want to order something then have it get cold. Who wants icy grits and eggs? Eating a late breakfast then makes it difficult to coordinate lunch and dinner times around his chemotherapy. Mike cannot eat an hour before or two hours after his Temodar. That wouldn’t be a big deal if the hospital cafeteria operated like a cruise line and offered meals around the clock. But the chefs around here like to go home, so they close at 7:00—there is no 24 hour pizza bar. The late radiation treatment also caused Mike to miss out on physical therapy today. They came by at the normal time, but he was still downstairs for his radiation treatment. When the therapists returned later in the day, Mike had just started resting well; he felt bad earlier and was given some morphine.

I would like to give a shout out to the Richland Northeast Cavaliers. They had a dessert fundraiser today to help with our expenses and invited me and the girls to attend. Ava, Savannah, and I were delighted to go. I have never seen so many yummy desserts all in one place!!! (To you schools who need a fundraising event, this is a great idea—you just have folks pay five dollars and bring a dessert…then you can eat as much of the other desserts as you want.) It was great to visit my alma mater and see some of my old, I mean former, teachers. (And for you folks who don’t know me and Mike very well—Mike did not work at Northeast when I went to school there, so he wasn’t hitting on me when I was a young, impressionable teen.) Before I left, I was able to smuggle a sampler plate of the softer desserts for Mike. I gave them to him this afternoon when I returned to the hospital, and he loved them. I can't imagine why he would be so happy to have something other than hospital food. Mike and I are so fortunate that he works with such wonderful people. Thanks Cavs for all you have done for us!

Mike was pretty quiet this morning and when I returned to the hospital this afternoon. Hmmmm…I wonder if I need to floss his teeth again. Maybe it wouldn’t be as scary if I’d just do it every day.

And of course I would be remiss if I didn’t thank the rest of you as well for all you have been doing. Some of you may not think you’ve done anything, but if you’ve said a prayer, you’ve done plenty. I think we all realize the only reason Mike is doing so well is because God is hearing our prayers. Please continue to pray that the radiation and chemotherapy treatment will work well for Mike and for his physical therapy rehabilitation. One other prayer request—our girls have been a little sick, so they haven’t been to the hospital since early this week. I know Mike would like to see them, but with his immune system being lowered, we can’t risk them being up here unless they are well. Ava is a complete wild child when she’s on cold medicine, so that has to be used sparingly! Please pray for a speedy recovery for the girls, so they can see their daddy.

Wednesday News

2008-02-20T16:22:00.004-05:00

We had a bit of a snafu today. The hospital suddenly blocked Blogger which meant I could not post anything new or read any of your comments. Fortunately, we’ve had an awesome nurse the last three days and she hooked me up with the tech folks, so all is well and good now. Actually, all of the nursing staff and our current doctors are great. The only problems we’ve ever had have been with the original neurosurgery practice, but we don’t have to deal with them anymore. That makes for a much happier Diane.

I didn’t post anything yesterday because there wasn’t a whole lot to write about. I can only stretch my wit so far when Mike isn’t giving me much to write about. I would hate for you all to be in search of a Cliff’s Notes version of the blog because it has become boring to read. So…if I don’t post, it’s just because there haven’t been any big changes. I will make sure I write a new post at least every other day or if anything major happens—good or bad. With all that being said (or written, actually), here’s an update on the last couple of days…

Mike slept a lot yesterday. I was beginning to think we were going to have a Rip Van Wrinkle on our hands. He practically slept through his radiation treatment—he was asleep before he went down there and shortly after it was finished. He woke up for breakfast and stayed alert really well until he became exhausted with the physical therapy. He sat up for about 33 minutes (this is always with assistance, by the way), moved some limbs independently, then was worn out and went back to sleep! That’s about all that happened yesterday, hence the reason there was no post.

I think today Mike has looked the best that I’ve seen him since we left for Duke. He’s been awake and alert for most of the day, though he had a few moments where he seemed quiet and out of it. A different physical therapist worked with him today, so she did things a little differently. Rather than having him sit on the edge of the bed for an extended period of time, she tried to make him sit by himself and move a little more on his own. He did a pretty good job, but he has quite a long way to go before he’s remotely close to moving around on his own regularly. But hey, from the wisdom of today’s feature on TLC’s Ten Years Younger, “Life is like a toaster. You have to be pushed down before you can pop up!” As I was feeding Mike lunch, he developed a really strong voice and the nurse could hear him in the hall; she was quite impressed—she had not heard him talk that well yet.

The doctor did start lowering Mike’s steroids on Monday. He was on 20mg four times a day (it was six when he was first admitted to ICU at Duke), and it is now at 15mg four times daily. As long as it doesn’t appear that his brain is doing some rebound swelling from the treatment, the dose should be lowered to 10mg by the end of the week. The goal is to get him down to 4 mg every six hours.

And forgive me for a having a “proud momma” moment…Ava had a little program at her preschool last night since the music teacher became sick right after Thanksgiving and they couldn’t do it at Christmas. As she went on stage she raised her arms in the air and said, “I’m up here, Mommy!” a few times so everyone could hear. I’m including a picture of us after her stage debut! For those of you not too into children, just take it as an opportunity to see a miniature Mike in a dress!

Mellow Monday

2008-02-18T17:17:00.003-05:00

Nothing too revolutionary has happened over the last couple of days. Yesterday was a great day for Mike as far as talking goes. He had a voice the entire day, and just about everything he said could be understood. He was awake for most of the day as well. I think the best part of Mike’s Sunday may have been when his friend Fran brought him some cut-it-with-a-spoon cooked broccoli. Mike has been missing his double orders of the green stuff. We’re not allowed to order it off the hospital menu because sometimes it’s a little too hard, but the speech therapist said some could be brought in if it was soft. Mike was most pleased that there were leftovers, so he had some for lunch today as well. If he behaves, I may heat up some more for dinner.

Mike had his radiation this morning and did fine with it. The radiation oncologist saw him for the first time today since early last week and seemed pleasantly surprised that Mike is doing so well. I guess he wasn’t expecting Mike to know where he was or what year it is. I asked when the next MRI will be done and found out that won’t happen until after this treatment cycle. Mike’s last radiation treatment will be the day after Easter. The physical therapists came by today, and Mike sat up for 30 minutes. He didn’t keep up the trend of doubling his time, but since he didn’t have physical therapy over the weekend, I suppose I’ll cut him a little slack. Hmmm…I wonder if he was so generous on cutting that kind of slack with his former ball players? Mike has been quieter today and seems to be resting more than he did over the weekend. I’m figuring the radiation is causing him to be so tired…you know me and all of my medical expertise.

Mr. Popular

2008-02-16T22:44:00.003-05:00

Mike had a lot of visitors today, and he was awake for most all of them; about 20 people dropped in throughout the day. He was pretty alert for the majority of the day and could talk a little with those who came for a while. We both appreciate you all stopping by. I think he was definitely the most popular patient on the floor! To those of you planning to come see Mike over the next several days, do be aware that while he is leaps and bounds better than he was in ICU at Duke, Mike is far from being his normal self. He can’t really talk a whole lot, but he definitely knows and remembers who comes to see him. If you talk to him, he does understand what you are saying, but he may not be able to respond very well.

Mike’s hair is starting to fall out from the radiation and chemotherapy. (Of course some of that is natural—I’ve been finding his hair all over the house for months. I guess now he just has an excuse for losing it!) The soon-to-be bald spots on his head from the radiation will be permanent. The hair loss caused by the chemotherapy will grow back. Oh, and Mike does take the Temodar on the weekends…he has to take that for 42 straight days.

This morning I read to Mike the comments that have been left on the blog over the last several days. Though he didn’t say a whole lot, I could tell he was touched by all of your words. After reading through many of the comments, I asked him if he wanted me to stop reading aloud and he said, “No.” Mike did want me to ask all of y’all to continue to pray for him. Though he doesn’t remember being at Duke, he does realize it is only because of prayer that he is still with us.

There hasn’t really been anything revolutionary today, but we haven’t had any setbacks either, so that’s good. I want to thank you all again for all of your kind posts, cards, e-mails, phone calls, visits to the hospital, and especially prayers. I hope all of you have managed to be off from work on Monday for Presidents Day and have a fantastic long weekend!

Friday Update

2008-02-15T19:55:00.004-05:00

There’s not really a whole lot to write about today, but I wanted to be sure to post so none of you would get worried and think something drastic happened. Mike had his fourth radiation treatment this morning then ate a good breakfast. The physical therapists came by right after that, and he did well with his therapy. He sat on the edge of the bed for 26 minutes today; yesterday he could only sit up for 13 minutes and the day before that for only six minutes. If he keeps doubling his time like that every day, the therapists won’t be able to work with any other patients because they’ll have to spend the entire day sitting with Mike.

Mike has been pretty quiet and slept a good bit today. The radiation and chemotherapy can make patients tired, so his fatigue is probably from the treatment. The doctor said when starting radiation, patients may get worse before they get better; sometimes swelling incurs. He also said the faster growing the tumor, usually the faster it reacts to treatment. He said we probably won’t see any real noticeable results for a couple of weeks.

In case you missed the Mike’s segment on WLTX last night, I’ve created a link to it on the left hand side of the blog. I thought they did a great job with it. Little did I realize that in addition to adding ten pounds, the camera also makes one’s hair look stringy and forehead big. I never noticed before that I’d be such a great candidate for Botox. And hey, if you get bored and are tired of playing Solitaire, you can pull up the video and play “Count the Pores on Diane’s Face.”

I guess the highlight of Mike’s day today has been when his two favorite sisters-in-law came up and brought the girls for a visit. (That’s according to them, of course.) He always enjoys catching up with what’s going on in the celebrity world and what’s going on at school. It’s like he has his own National Enquirer reporters keeping him informed--after all, inquiring minds want to know!

Some People Will Do Anything to Get on T.V.

2008-02-14T14:49:00.002-05:00

Just wanted to let you all know that WLTX-Channel 19 is going to do a story on Mike tonight at 6:00. They came to the hospital and interviewed me and talked with Ralph Schmidt, principal at Richland Northeast, as well. Do keep in mind that the camera adds ten pounds, so that’ll be my excuse for how I look. :-)

Since it’s Valentine’s Day, I served Mike breakfast in bed. Awfully sweet, don’t you think? I may just do the same for dinner as well. He can’t have everything to eat that he would like—it has to be soft and chewable. Chicken wings actually aren’t even out of the question as long as they’re taken off the bone and cut into small pieces. His liquids have to be thickened and probably will be for the next couple of months. My parents just brought the girls up here with their valentines. Mike said, “Savannah Grace, Daddy’s girl” aloud. That’s the chant he normally says to the girls. His ability to talk above a whisper comes and goes, but he has been doing better lately. I think the feeding tube being removed and eating regular meals will help with that. That, of course, is my professional medical opinion.

Mike had his third radiation treatment early this morning. He was put on some antibiotics yesterday as a preventative measure; the chemotherapy tends to weaken the immune system, so they want to make sure he doesn’t catch anything that may be floating around. He’s still on a high dose of steroids; they’re going to start weaning those down but are waiting until next week because the radiation can sometimes cause the swelling to recur. Hopefully, we won’t have to worry about that happening.

Wednesday Checklist

2008-02-13T13:25:00.004-05:00

Radiation? Check.
Mike had his second radiation treatment this morning. They came by and got him around 8:15, and he was back in the room around 9:00. Since he is an inpatient, there’s not a set time for him to get radiation each day. They just work him in around scheduled appointments. He will get 30 treatments of the radiation—these are only done on weekdays.

MRI Results? Check.
I couldn’t get a whole lot of concrete results on the MRI because the one he had done on Monday was not a typical one. The radiation doctor only gave me one dimension on the tumor—5.6 centimeters. That is one millimeter larger than the last MRI at Duke. The doctor said the tumor is an odd shape, so he didn’t give me any other dimensions. There is still some hemorrhaging, but I’m not sure how much. He also said that some people take really well to the radiation/chemotherapy combination and some people don’t see much of a result. We all know that Mike is a bit of an anomaly, so please pray that this treatment will work well for him.

Swallow Study? Check.
Mike’s feeding tube was removed, and he had the swallow study. He did pretty well; nothing entered his airway, so that was good. He did better with thicker consistencies than thinner ones. The thinner ones didn’t go all the way down as well, so there is a little risk of it going into his airway which can cause him to aspirate. That would not be a good thing. So, any liquids Mike drinks have to be mixed with some stuff (the medical term) to thicken it. He does NOT have to have a peg put into his stomach right now. As long as the doctors feel like he’s eating well and his nutrition is good, he will not have to do that. I just ordered his lunch, and he will be having roast, mashed potatoes, green beans, pasta salad, and pudding. He was really hoping for that double order of broccoli (seriously, he does like it—go figure), but he’s not allowed to have that.

Clean Shave? No check. Personality Returning? Check.
I attempted to shave Mike again today per his request, but apparently it’s a little painful to be shaved when there’s quite a bit a growth. It was hurting him so badly that he said he was going to slap me, so obviously his personality is coming though. (To those of you who do not know us very well: Mike was just talking smack and would never really hit me. He knows he would be a single man and sitting in the hospital room all by himself if the thought ever even crossed his mind.) Being the ever-thoughtful wife that I am, I went to the store and bought an electric razor for him. Jeez Louise…I did not realize those things were so expensive! The razor is charging now and hopefully by the end of the day, his face will be as smooth as a baby’s bottom.

Chemotherapy? No check. Yet.
Mike will get his Temodar every day at the same time, so he won’t get it until 5:00 this afternoon.

That’s about all for today. Every now and then Mike will talk louder than a whisper. One of his former football players (who affectionately refers to Mike as his “white daddy”) called. I held the phone to Mike’s ear, so he could hear him, and Mike was able to say his name. That was pretty cool.

Treatment Begins!

2008-02-12T19:30:00.001-05:00

My apologies for the delay in a post today. There really wasn’t a whole lot of change until late this afternoon when the nurse came by and said the radiology team had come up with a plan and were ready to start Mike’s radiation. Yahoo! That was a really quick turn around on coming up with a plan. When we went down for his simulation yesterday, the nurses told me it’s pretty complicated to come up with a treatment plan. From my understanding they put the MRI and CT scans on top of each other and come up with a plan for treatment. It usually takes a while to do because they have to figure out where they are going to go in with the radiation beams so that they don’t cause any other harm such as damage to his vision. We are very fortunate that they jumped on this and got the plan together so quickly. Since the radiation started today, Mike began the chemotherapy as well. The two are started on the same day because they work better together than they do individually. The pharmacy compounded the Temodar, and Mike received it through his feeding tube. Yes, that would be the feeding tube and not the I.V. like some ridiculous people might think. Can you imagine someone even thinking such a silly thing? I haven’t received the tumor measurement from the MRI yet. They didn’t do a typical MRI yesterday; it is what is known as a “mapping” one to come up with the treatment plan. By the time we got down to radiation today, the doctor had already left, so I was unable to find out the size. Hopefully, I’ll know something tomorrow.

After we returned from the radiation treatment this afternoon, the speech therapist came for the swallow study, so it ended up being a rather productive day after all. The speech therapist had Mike try some of the yummy hospital ice, drinking water, and eating applesauce. He did well with all of those, so tomorrow he will have part two of the study where they will take him down to x-ray to watch him swallow barium. This will let the doctors know if anything is getting stuck in Mike’s esophagus or if all is going down well. I think the plan is to remove the feeding tube from his nose to do the test then if they feel like he still needs some assistance with his eating, they’ll put a peg in his stomach.

Thank you all again for your many, many prayers. Mike and I (and I am sure all of you) are well aware that the only reason Mike is still with us is because of all of your prayers. Please continue to pray. While Mike is showing improvements from day to day, we are still far from being out of the woods.

Mike Bracelets

2008-02-11T17:55:00.000-05:00

Some of you may remember from an earlier post that my friend Allison came to visit me for lunch while I was at Duke and taught me how to crochet a chain stitch. (And just so my other girlfriends who made a trip to Duke don’t feel slighted their names didn’t make it to the blog…Kathy, Dianne, Paula, and Sonya came to visit for a couple of hours as well. And of course, my friend Claire stayed with me at Duke the second week I was there; Mike’s cousin Roz was there with me the first week.) Anyway…my girlfriends came up with the idea of creating “Mike Bracelets” since I was ending up with an entire skeen of yarn transformed into one gigantic chain stitch. Lance Armstrong has yellow, breast cancer has pink, and now Mike Starnes has slate blue. So, if you would like a piece of the crocheted yarn to wear around your wrist in honor of Mike, just send a self-addressed stamped envelope to the address below, and one will be mailed to you. All of the “bracelets” have been crocheted by me, so I can’t promise they’re all beautiful. C’mon and cut me a little slack—I just learned how to do this eight days ago.

Mike Bracelet
600 Woodrow Street
Unit G
Columbia, SC 29205

More Progress

2008-02-11T12:41:00.000-05:00

Yesterday was another great day for Mike; he was just a Chatty Cathy and talked quite a lot. He has progressed from one word responses and has tried talking in sentences. His speech is very soft and in whispers, so it can be a little hard to hear him, but he most definitely knows who is in the room and what he is being asked. He laughs at appropriate things as well. He was very awake and alert yesterday from about 1:00 until he went to sleep shortly after 11:00. He’s been sleeping most of this morning. (At least I think that’s the case—I’ve been napping quite a bit myself and every time I wake up, he’s asleep. He wanted me to stay here with him last night, so I got up about 5:30 this morning to run home, take a shower, and get dressed, so I wouldn’t scare anyone around here. I was pretty tired, but I feel rested now.)

When I talked with the oncologist (the doctor who agreed to take Mike as a patient from Duke) this morning, he said everything is still on go to start with the radiation and Temodar. The radiation doctor just came in, and he seemed to think that we had to wait longer for the wound from the biopsy to heal before they could begin. I told him that the neurosurgeon came by on Saturday and said it was fine to go ahead with treatment. He actually said it takes “several days” after the simulation to get the computer straight before they begin the treatments. I’ve always interpreted several to mean seven or eight, so I said, “It will be another week before he gets the radiation?” He said it wouldn’t be that long, but it would be “several” days. I’m thinking maybe he’s confusing the definition of “several” with “a few.” Who knows? His teachers growing up must not have had a literacy coach to teach how to understand the difference between the two words. As I’m writing this post, the radiation doctor just came back in and said they have simulation scheduled for 2:00 today. They will do both a CT scan and an MRI. Once I know something from those results, I’ll let all of you know.

Taking the Avastin is still not out of the question, but we have to wait a bit longer since the last MRI showed Mike was hemorrhaging; if he takes it now, it will make him bleed more. Mike’s cousin has been in continued contact with one of the neuron-oncologists at Duke, and she said it will probably be four to six weeks before he can safely start taking the Avastin.

My parents brought the girls to the hospital again yesterday, and they were here for a few hours. I’m beginning to think Ava and Savannah are a most helpful medicine. Saturday night after they visited, Mike started trying to talk. Last night after their visit, Mike was taken off the oxygen assistance. If he keeps this up, he may be turning cartwheels before the week is over.

He Speaks!

2008-02-10T12:02:00.000-05:00

Last night was a great night! My parents brought the girls by to see Mike. Since children under 12 aren’t allowed in ICU, it was the first time they had seen their daddy since we went to Duke. Mike was very alert while they were here (not because they were loud—they’re usually pretty well behaved) and seemed very happy to see them. When we held the girls up to him, he was able to give both of them a kiss.

Now for even greater news…Mike said two words last night! Granted they were whispers and weak, but they were words nonetheless. I was telling him he was looking a little gruffy; although I like the gruff look, he does not, so I asked him if he wanted me to bring his razor and shaving cream to get cleaned up on Sunday. He then said “razor.” Since he was so aware of what was going on, I showed him some pictures. I showed the one of him and Ava at the fair (the same one on this blog) and asked him to blink twice if he remembered taking Ava there; he blinked twice. I showed him some other photos as well. He was looking carefully at them, but I couldn’t get him to blink his eyes indicating whether or not he remembered them. I then asked him if it was okay with him for me to go home, take a shower, and get some rest to squeeze my fingers, and he did. I asked several other questions and he would squeeze in response to those as well. As I was leaving, I told him to tell me “bye” and he did. When I arrived today, he was able to say “mornin’” when asked in response to “good morning.”

No other changes for today. They’re going to keep him on the same medications and nutrients. In addition to the radiation simulation tomorrow, he is supposed to have a swallow study done. This will check for what type of consistencies in liquids he can tolerate.

Treatment Starts Soon!

2008-02-09T09:56:00.001-05:00

Mike is out of ICU! He has been moved to a step-down unit where he’s still pretty closely monitored, but it’s not as restrictive as ICU, so we don’t have to deal with getting kicked out of his room when more than two people are here or with the wacky visiting hours. We are still in the Motel 6 part of the hospital, so if you do happen to swing by for a few minutes, be sure to park at the South Tower. Do be aware that Mike won’t be able to sit up and talk with you, but he will know that you are here as long as he is awake.

Everything is supposed to be in line to begin radiation on Monday. Apparently, no one in the Columbia area does radiation on Saturdays and Sundays, so that’s the soonest he could begin. (What’s up with not wanting to work weekends? Do these people have a life or something?) The neurosurgeon who did Mike’s biopsy is supposed to come by to check on Mike and give an “okay” to start the radiation. Those of you who know the details of what we went through with that doctor’s practice in January know how difficult it will be for me to play nice if I see him. I’ll try to follow my mother’s lifelong instructions of “kill ‘em with kindness,” but it will definitely be a struggle.

The radiation treatment will be done here at the hospital. They have to do a simulation first, so the actual radiation may not begin until Tuesday. With the simulation, they do an MRI and have to fit Mike with a helmet made especially for him. He’ll have to wear the helmet every time he goes in for treatment; this assures that they are zapping the same spot each time. I just got a copy of the MRI Duke did on Monday, and the measurements of the tumor read 5.7cm x 5.2cm. That’s really smaller than I thought it was going to be. They don’t have an official report here from the MRI done on January 28; I didn’t see an official report there either, but the measurements given to me the night we first arrived at Duke (5.5cm x 5.5cm) were done by the neurosurgeon on call, so maybe that wasn’t a completely accurate reading.

Those of you with any medical knowledge whatsoever were able to figure out yesterday that I am clearly not a doctor (nor do I play one on t..v.). I wrote that Mike would get the Temodar through his I.V., but it will actually be through his feeding tube. I.V., feeding tube…is there really that big of a difference? (Don’t feel compelled to answer that.) I think everyone was able to use their inference skills to figure out that I meant Mike would not be able to swallow the pill for himself, and it would have to get in his body by some other means. Mike will begin taking the Temodar the same day he begins radiation.

On another positive note, I got to see my girls yesterday!!! I’ve decided that Ava and Savannah are going to have to stay in Columbia when they go to college because going that long without seeing or talking with them just isn’t a good thing. Ava is normally an out of sight, out of mind kind of girl, so I was very happy when I walked in and she said, “Mommy! Mommy!” I was lucky Spongebob wasn’t on, so I didn’t have any competition there. Savannah is getting huge—she’s gained nearly a pound and a half since her four month check-up three weeks ago. I’m going to have to check and see if Jenny Craig makes baby formula and rice cereal.

One other pretty cool story…Mike’s nurse for today told me that I didn’t know her (nor did she know me or Mike), but that Mike has been on her church’s prayer list, and they have been praying for him. She recognized his name when he was checked in. Pretty neat, eh?

More Good News

2008-02-08T09:33:00.000-05:00

Mike is still stable and doing well considering the circumstances. I spoke with the doctor, and he’s going to have a few tests run to see about going ahead and starting radiation. He’s looking at starting the oral chemotherapy as well. Right now they’ll have to crush the pill and give it to Mike through his I.V. I’ll let y’all know when this treatment definitely starts. (This is not the Avastin pill; Avastin is actually not a chemotherapy agent…I believe what Mike will be taking is called Temodar and is what is traditionally used to treat glioblastomas.) The fact that Mike is able to have any treatment at all is a miracle. If you’ll recall from my post earlier this week, after Mike’s latest MRI report came, the doctors told me there was nothing else they could do. There may have been nothing they could do, but obviously there is plenty that God can do.

Physical therapy has also been ordered since Mike has been in the bed for so long without a whole lot of movement. After being in the bed for several days following his biopsy a few weeks ago, Mike was very weak from not moving around for so long. As you’re well aware, he’s been in bed much longer this time, so he definitely needs the therapy. Since Mike is progressing as well as he is, we are going to move out of intensive care! I’m not sure exactly when this move will take place, but I think it’s supposed to be today at some point; I think we’re just waiting on a room to come available. He is by no means sitting up and talking, but if you could have seen him a few days ago (heck, even Wednesday morning before he was being transferred back home), you would be no less than amazed by what God has done.

I want to thank all of you who made telephone calls and sent e-mails to help with the issue of insurance paying for transportation back home. As I’m hearing of more and more of you who made contacts, I’m beginning to think that neither my writing nor verbal skills had any impact on Blue Cross Blue Shield at all—it was all of you who made the difference. I guess I’m going to have to enroll in that remedial communications course after all. Mike and I are so blessed to have such wonderful friends and family. Thank you for everything you have done and especially for all of your prayers.

A Day for Miracles?!

2008-02-07T15:13:00.000-05:00

My apologies for the delay in updating the blog, but I think you’ll find this post worth the wait…

We’re home!!! Mike ended up being transported by air back to Columbia last night. Apparently, I need to lose more pounds than I thought because they said I couldn’t ride with him due to weight issues. It took a little longer to get back than they anticipated because of the weather, so he was admitted only about an hour before I got to the hospital. I ended up getting back to my house and in the bed around 3:00 this morning.

I must need to work on my writing skills more than I thought. I e-mailed my appeal to Blue Cross Blue Shield yesterday around 4:00; the lady called me back and said they don’t make the rules, they just follow them and since it was not medically necessary for Mike to be transported to Columbia, they would not pay for it. My verbal skills must be a little better than my writing (either that or she thought I was completely unstable when talking with her on the phone) because I got a little not-so-nice with the lady and told her that it was necessary and that it wasn’t right on any level to allow me to watch my husband die alone 250 miles away from home when I have two small children that I haven’t seen in ten days. She told me there was another level of appeal and that she would e-mail me the information for that. Well…today I received a voicemail message from that same lady and she said that Blue Cross Blue Shield has decided to pay for the transport. Maybe there is a heart buried within the insurance company somewhere after all.

I realize I’m not supposed to get all excited about this, but it’s very difficult not to. Yesterday around 4:30, Mike started opening his eyes. It was the first time he had opened his eyes since he was admitted to the ICU. I went over to him, and he very clearly knew who I was. He was looking at me instead of “through” me like he would when I would open his eyelids. He could squeeze my hand and move his feet on command. I thought maybe it was a fluke, but he continued to do this (though not always squeezing on command) until they whisked him off to be returned home. I was basically told not to think that this was some sort of sudden healing—the tumor has probably just shifted and relieved pressure from the area of the brain that was controlling those behaviors. But…Mike has been doing the same thing today!!! In fact, when I came in to see him, he had been extubated. In other words, he has been taken off of the ventilator and no longer has a tube down his throat helping him breathe. He does have oxygen hooked up to him, but that just goes through his nose. They are now working on Mike’s nutrition, so he’s not so weak. I talked with the doctor today, and he said if Mike continues to get better, they can start to treat the tumor. If he’s better, they can at least start with the radiation and chemotherapy. The Avastin I wrote about in earlier post is not completely out of the question either, although it may be a bit risky. (Avastin is the drug that has shrunk brain tumors by half in 65% of the patients who have taken it.) We’re going to have to monitor his progress and weigh the risks with taking it. Keep praying!!! Given the condition Mike has been in the last ten days, I think it’s nothing short of a miracle that he is responding like he is now, even if the ICU staff at Duke thinks it’s probably just a shift in the tumor. We serve a God who is greater than any tumor and can make anything happen.

It Figures...

2008-02-06T16:39:00.000-05:00

Due to the weather, they won’t fly a plane out tonight. They will, however, go ahead and give us ground transportation, so Mike will travel to Columbia by ambulance tonight. They won’t be able to leave until 8:30, so it will probably be around 1:00 in the morning before he gets there. If we wanted to wait to go by plane, we would have to wait until tomorrow evening for another flight. Waiting until tomorrow night to leave just to go by plane didn’t make much sense to me.

I called Blue Cross Blue Shield’s president to try and explain the absurdity of them not being willing to cover the cost of transporting Mike back home. I was only able to talk with his secretary, but she had someone else call me back shortly thereafter. He said according to their records, the claim has only been denied once and I could appeal it. I’ve already written the letter of appeal and e-mailed it to them. They have received it, and they are going to try to get back with me by tomorrow on this issue. I guess we’ll see if my writing serves me well or if I need to go and take some remediation courses.

It's Official

2008-02-06T11:44:00.000-05:00

Everything is in place, and we will be coming home this evening. There is a front coming through, so we won’t be able to fly out until after 7:00 tonight. The flight is only about 35-40 minutes, but with transport to and from the airport, it will probably be between 9:00 and 10:00 before we get to the hospital.

Looks Promising

2008-02-06T11:02:00.000-05:00

It looks like we may get to come home today. Dr. Madden has agreed to take on Mike as a patient, and we’ve heard from two friends that Lexington does have availability in their ICU. Nothing is official yet, but it is looking promising at this point. Insurance has denied the flight home three or four times now, so if anyone knows someone in high places at Blue Cross Blue Shield or the State Budget and Control Board who can get that approved, that would be really great. I most definitely don’t mind paying if there’s not another choice, but you know Mike hates to waste money if we don’t have to. I don't think they make coupons for medical flights. The point we’re trying to make is that we didn’t come up here for extended treatment; we came for a clinical visit and thought we would only be here overnight. It’s similar to going on vacation and having to go to the hospital; it’s not something that was planned. I’ll update the blog once I know something official.

Problems Getting Home

2008-02-06T09:16:00.000-05:00

We’re having problems getting Mike back home. There are no ICU beds available at Richland right now, and since Mike is stable in another hospital, it is not a priority for them to get him there. Does anyone have any connections with a hospital in Columbia? We need an ICU bed available and a doctor willing to admit him in order to get him home. Right now the insurance company is balking at paying for the transportation back home, but the Patient Resource Manager has things lined up to where we can get the flight back, and I’ll just pay for it myself, so that’s a non-issue. The issue is getting an ICU room and a doctor willing to take him.

No Options Available

2008-02-05T13:08:00.000-05:00

The results from Mike’s MRI are back, and they are not good. The tumor has grown by 30% since he was admitted last Monday, and his brain is hemorrhaging. The doctors have said there is nothing they can do for him now; it will just be a matter of days. We are working on having him transported to a hospital in Columbia, but that probably won’t happen until tomorrow.

Still No Change

2008-02-04T18:33:00.000-05:00

I know a lot of y’all have been waiting on an update for today. I haven’t really written anything because there hasn’t been much of a change. My Super Bowl plan didn’t work last night, though Mike would have been pleased that the underdog won. When I arrived this morning, they told me an MRI was scheduled, and I was waiting for that to be done and have the results before I posted anything. They have not done it yet, but it is still supposed to be done this evening some time. I suspect I won’t get any results until tomorrow.

They did the ultrasound on Mike’s legs yesterday to check for blood clots. It came back negative, so that’s good. Since he hasn’t had any seizures in quite some time, Mike is no longer on a 24-hour EEG monitor. He is still on anti-seizure medication. His blood-sugar is normal, so they’re weaning him off of the insulin. He does appear to have a staph infection, so we get to wear these lovely yellow gowns and latex gloves when we come in his room now. I’m certain they’d be all the rave out on the city streets, so I need to be sure to grab a few extras to make a fashion statement for whenever I return to Columbia.

Other than that, there has been nothing eventful today. Mike is still non-responsive. My friend Allison came up yesterday and taught me to crochet a chain stitch. That’s all I know how to do, so if anyone has a dire need for a lovely nine-yard piece of crocheted yarn, I have one ready for you.

Still the Same

2008-02-03T12:30:00.000-05:00

This is picture of Mike's tumor, so you can see just how big it is. The white stuff around the tumor is the swelling. The doctors here couldn't believe that Mike was functioning as well as he was for as long as he did. We figured it was because he is so overly orderly and anal about stuff (shocking to some of you, I know) that he was able to compensate for the difficulties the tumor was causing.

There still hasn’t been much change. Mike now has a urinary tract infection, and the doctors are giving him antibiotics for that. His blood-sugar level was a little high yesterday, so they upped the amount of insulin they were giving him; it is now back to normal. He did open his eyes to pain (the first time he has opened his eyes since Monday), but we’re not supposed to get excited about anything he does unless it is consistent. Either today or tomorrow they are going to run a test to make sure he isn’t developing any blood clots in his legs. (He is wearing venodynes to help control them.) The oncologists are most likely going to have a CT scan performed on him tomorrow to see if there have been any changes since the MRI last week.

The tumor cannot be treated until Mike is better. If they tried to give him the chemotherapy now, it would make him worse. All of the medications he is now on weaken his immune system; the oncologist yesterday said his immune system is very similar to an HIV-positive patient’s. There is available a miracle drug called Avastin that would help shrink the tumor if he were better. They have been using it in clinical trials for almost two years now. In 65% of the patients, the tumor has shrunk by half. The other 30-35% saw a shrinking of 20-25%. It does cost $35,000 for a six week dose, but if Mike could get better and sign an agreement to the trial, the medication would be provided at no cost to us. The oncologist said they have seen the Avastin begin to shrink the tumor within 24 hours, though the patient does not feel a significant change for at least a week or so.

I think I’m going to turn on the television tonight and let the Super Bowl be a little background noise. Maybe some offensive and defensive play talk will jolt him out of this. Goodness knows I can’t talk intelligently about football. I can dream this will work at least…

No Change

2008-02-02T08:31:00.001-05:00

As was the case yesterday, Mike is moving his arms and legs a bit, but he doesn’t do anything on command. He is on some medication that has controlled the seizures; he hasn’t had any more. The neuro-oncologist wants to just watch and see what he does over the weekend. There may or may not be any change; there’s no way to predict that. Today around 4:00 will be the 48 hour mark since Mike was taken off of the Versed. If there continues to be no change, we are going to try to transport Mike back to Columbia later in the week, so we can be home. As far as what the ICU is doing here, that same treatment can be done in Columbia. Our oncologist in Columbia has agreed to oversee him there if we end up doing that. He talks to the oncologists here regularly, so they will be able to communicate about what to do if Mike makes any changes later.

More Seizures

2008-02-01T10:33:00.000-05:00

Mike was taken off the Versed yesterday around 4:00 and started having seizures again. He was given another kind of medication to help control those seizures. The doctors want to wait and see how he is 48 hours after getting off the Versed and reassess him then. I don’t know that there are going to be any good options at that point; it doesn’t look very promising.

Thank you for all of your prayers and posts to the blog. I have read all of your messages and greatly appreciate them. Please continue to pray.

Seizures

2008-01-31T11:01:00.000-05:00

When we returned to see Mike yesterday afternoon, he was non-responsive again. The only time he was really moving any body parts was when he was having seizures, and he was having a good many of them. The doctors put him on Versed (ver-sed) last night to control the seizures and it appears to be helping thus far. The drawback to the Versed is that it’s a sedative, so he’ll sleep and we won’t know if he can do anything or not. He needs to go 24 hours with no seizures before they take him off of the medication. After that we will find out if he can respond to commands. I don’t know what the options will be if the Versed doesn’t control his seizures or if he’s still non-responsive after being off it.

On another note, I do want to say how absolutely wonderful the doctors (and entire staff) are here. It is a dramatic difference from what we experienced in Columbia. We paged the doctor yesterday to see what time he thought he would be by in the afternoon because we had to leave to change hotels, and he asked what time would be good for me. How nice is that? Even the doctor we saw on Monday when we went in for the clinical visit has been by every day to check on us and Mike, and she’s not even considered to be his main doctor at this point. While it would have been nice to get up here last week so that we would probably not be in this predicament, we are extremely blessed that Mike was scheduled to be at Duke when all of this happened. I firmly believe he has the best care available in the country here.

One other thing…I seem to be getting a more regular cell phone signal now, so if you leave me a message, I should be able to get back in touch with you.

A Good Sign

2008-01-30T14:08:00.000-05:00

Your prayers are working! Mike had been completely unresponsive, but he is now moving his feet on command. He had not moved his legs at all since Monday night until just a short while ago. We’re a LONG way from getting where we need to be (he’s still not moving his arms), but this is a fantastic start. Please keep praying.

More Waiting

2008-01-30T10:11:00.000-05:00

Things are still not looking good. Last night we became a little hopeful after talking with the neuro-oncologist. She said Mike’s rapid decline may have been caused by a seizure, and it would take a while for him to recover from that. He was able to squeeze my finger, move his thumb a little, and move his tongue around as if the tubes were bothering him. He had not done any of that earlier in the day. Unfortunately, this morning he is non-responsive again. The doctor wants to try to give it another 24 hours and see if there is any improvement.

Wait and See

2008-01-29T15:06:00.000-05:00

Things are not going well. Mike is doing worse in intensive care today than he was last night when he was admitted. The doctors are a little perplexed as to what caused his rapid decline yesterday. Usually, there would be some sign of seizure, bleeding, etc. but none of that was present. (Typical of Mike not to follow the textbook, eh?) He has a breathing tube hooked up to him, as has been the case since he was admitted to ICU. He hasn’t stopped breathing, but his breathing was a bit shallow and the tumor’s location is in the part of the brain that tells the body to breathe; they were afraid that the tumor would cut off that signal and he would stop breathing altogether. He has an EEG to monitor seizures, but none have been recorded.

The next 24 hours are critical. The doctors have said the tumor is absolutely NOT operable, so that option is out. They are giving Mike tremendously high doses of steroids as well as other agents to treat anything that may possibly have caused his decline. The doctors are going to reassess him in the morning. If he is not responsive, we’ll have to sit down with the doctors to see if there are any other possible options.

Please keep praying…I’m certain that is what made my three hours of sleep last night feel like eight, and it’s the only thing that can help Mike now.

Pray for a Miracle

2008-01-29T05:33:00.000-05:00

Mike has taken a turn for the worse. He is in ICU here at Duke, so we will be here the rest of the week. They did a MRI on him, and the tumor now measures 5.5 centimeters by 5.5 centimeters. (When they first found it at the beginning of the month it was 4.5 x 4.7.) I don't know what our options are right now...the only option may end up being surgery which is EXTREMELY risky because the tumor is located in the center of his brain and has spread to the right and left sides.

I know several of you have left messages on my voicemail, but I haven't been able to get a solid signal up here, so I haven't been able to listen to them.

Brief Duke Update

2008-01-28T19:18:00.000-05:00

Mike is not doing well; his brain started swelling again today. The doctors here at Duke tried increasing his steroids, but he threw up everything. As I write this, we are sitting in the emergency room so that he can get hooked up to an I.V. and receive his steroids that way. We need him to be coherent tomorrow because he has to be able to knowingly sign consent to participate in the clinical trial. It has more promising results than traditional treatment. As soon as I have the time I will write more details about today's events and what is involved with the clinical trial, but I at least wanted everyone to know what is going on at this point.

Competence in Columbia

2008-01-23T22:34:00.000-05:00

I have a renewed faith in the world of adult medicine here in town after meeting with the oncologists today. Mike and I met with a radiation oncologist and a medical oncologist, and both were top notch. The radiation oncologist actually went over Mike’s MRI with us (a novel idea) and showed us the visual images from it. It was rather amazing to see just how big the tumor is in proportion to Mike’s brain. The medical oncologist told us based on Mike’s age and where his tumor is located, there is typically only one method of treatment for it, and that is a combination of chemotherapy and radiation. The chemotherapy is actually just a pill, so Mike would take that orally (I don’t remember the name of it, but I know it starts with the letter t) and do the radiation along with it for a prescribed number of weeks. At the end of that, they would do another MRI to see if the tumor had decreased in size. The only other option is to participate in a clinical trial. They aren’t authorized to do clinical trials here, but Duke is. He strongly encouraged us to participate in one of those if one is available. Basically, with the typical treatment, only about 20% of people are three to four years beyond their initial diagnosis. That obviously means 80% of people don’t have long-term success, so participating in a clinical trial could be more beneficial. The medical oncologist also said based on the size and location of the tumor, it does not look operable. The tumor is somewhat buried in the brain; it’s not like it’s sitting on the top edge and could just be scraped off.

I talked with Duke today, and we will be going up there on Monday. We have an appointment Monday afternoon and another Tuesday morning. We should be able to leave around noon after the Tuesday appointment. Here’s what is supposed to happen during these appointments…

Day One:
Complete a history and physical
Review pathology and most recent MRI
Answer any questions we have
Order any updated labs and/or an MRI (they may take place later that day)
Determine a plan of care

Day Two:
Meet with a social worker
Meet with a nurse educator to learn about the treatment and Duke’s team approach to care

Still at Home

2008-01-21T19:25:00.000-05:00

I know a lot of you check the blog regularly, so I didn’t want you to think anything drastic has happened and I just didn’t post anything. We arrived home Friday afternoon around 4:00. Mike took a three hour nap in his own comfy bed then we went out for a Japanese dinner (a couple of steps up from hospital food). We let the girls stay at my parents’ Friday night, and I went to pick them up Saturday afternoon. We didn’t do anything too eventful over the long weekend—Mike finally got the hair cut he’d been fussin’ about getting the last couple of weeks, we ordered a pizza Saturday night, and went to his aunt’s house Sunday for his cousin’s 40th birthday. We wanted to go to church Sunday morning, but Ava had a nasty, nasty cough and runny nose, so I didn’t think the other parents would appreciate her presence too much. I surely wouldn’t be too happy if someone else brought their sickly child to contaminate my children!

We’re both planning on going to work tomorrow to have some normalcy in our lives. Mike isn’t allowed to drive yet, so I’ll have to take him to Northeast before I head over to Airport. He’s definitely a heck of a lot better than he was last week at this time, but he’s not 100% back to his regular self. As one of the physician’s assistants put it to us, think of Mike as being on a spectrum. Before this tumor came about, he was all the way to the left of the spectrum. When he was admitted to the hospital, he was all the way to the right of the spectrum. Now he’s in the middle of the spectrum. Hopefully, with all of your prayers and some help from the doctors at Duke, he’ll keep inching back towards the left. (This is all, of course, metaphorically speaking…don’t go reading anything political into his place on the spectrum!)

On Wednesday we have appointments with a medical oncologist and a radiation oncologist here in town. Once we’re seen by Duke, the oncologists here will work in conjunction with them to give Mike the treatment Duke prescribes. We haven’t heard from Duke yet as to when we’ll be going up there, but they are closed today, so I wasn’t expecting to hear from them before tomorrow at the earliest. If anything eventful happens with the oncologists or if Duke calls, I'll post it on the blog, so everyone will know.

Good News and Bad News

2008-01-18T14:11:00.000-05:00

The good news is that Mike is going home! Seeing as how Mike isn’t hooked up to anything and takes his medication orally now, we can do that at home. I know he’s excited to get out of here. The doctor is working on writing prescriptions and orders for Mike to be discharged. I’m not sure exactly what time we’ll be leaving, but I suspect it will be within the next couple of hours.

We got the final pathology report from Duke. Mike’s tumor is a glioblastoma, grade IV. In layman’s terms: it’s really bad. It’s basically the most aggressive tumor out there. I talked with Duke today, and they’re actually booked for the next two weeks with consults, but they are going to work Mike in in the next week and a half. Depending on what they think once we get up there, they may start with chemotherapy then go to radiation, or they may just start with radiation. Once we have a definite date on when we’re going up there, I’ll let you know.

The Squeaky Wheel Gets the Oil

2008-01-17T17:47:00.000-05:00

The pre-biopsy, post-brain swelling Mike is back!!! All delusions and hallucinations seem to be gone (either that or he’s doing a really good job of fooling me). Mike is now able to walk around without falling all over the place, and he was able to take a real shower today. (He wasn’t so big on the bed baths and the no rinse shampoo…although I’m lovin’ that shampoo and will have to take the bottle home for days I don’t feel like washing my hair.) Mike no longer has the I.V. hooked up to his arm, and he just had the staples removed from his head. I tried to talk him in to saving the staples, but he wasn’t so interested in that. I think they would have been great for "show and tell."

The neurosurgeon team is now on board with trying to get everything coordinated with Duke and helping out with that in any way they can. We’ve asked that the neurosurgeon here call Duke to talk with their neurosurgeon, so that they’re hearing from someone else other than just me. I think as soon as we have an appointment scheduled with Duke, Mike will be released from the hospital. They just don’t want to release him without knowing what our next move will be, and I can understand that. I was hoping to hear something in regards to all of that this afternoon, but no such luck. Hopefully, we’ll get a clearer picture on where we’re headed and when tomorrow.

Closer to Normal

2008-01-16T11:15:00.000-05:00

Mike is getting much better, though he’s still not completely back to his normal self. He’s getting mad at me for him being here, so that’s a good sign. If you want to swing by the hospital to see him, that’ll be fine. He’s still confused on some things, so you can’t believe everything he says, but he’s becoming more reasonable. Just keep that in mind if you happen to stop by to visit…if you want any facts of what’s been happening, Mike isn’t the one to ask right now!

Back at the Marriott

2008-01-15T18:16:00.000-05:00

We’ve moved back to the North Tower at the hospital, so we have a lot more room to stretch now. Still the same towels, though. You would think as much as this place costs a night, they could provide some higher quality towels. I was lucky last night that Phillip insisted I go home around midnight so I could get some sleep. Otherwise, I would have been as tired as he was today. As expected, Mike was confused about where he was and kept trying to get up and leave last night. It was more of the same throughout the day today. He’s quite delusional and is hallucinating a bit. It can be a little entertaining at times, but it’s quite taxing at night when you’re tired and trying to get some rest. I FINALLY talked with a doctor about 5:00 today (that’s another story in its entirety), and he’s going to try lowering the steroids to see if that helps with the hallucinating. Mike’s sodium level is back to normal now. Hopefully, the combination of the lower dose of steroids and the normal level of sodium will get all of Mike’s faculties back in order.

I got in with an oncologist today. As seems to be the case with a lot of things around here, I had to take care of this myself. Yesterday I gave the physician’s assistant the name and number of the oncologist I wanted because Mike has to be referred to them by a doctor, but the P.A. didn’t bother to call. He seems to think that since I am planning on going to Duke that I don’t need to have an oncologist here. Luckily, God places the right people in our lives. It ends up that Ava’s speech therapist’s husband works for the oncologist we wanted, so a few phones were made, and, poof, we have an appointment with the oncologist we were wanting.

I talked with Duke today. They said they had not received the tissue samples, so that was another battle I had to fight. It ends up that this hospital sent the sample to the pathology department at Duke and not to the brain tumor center like they were supposed to. Had I not made any calls, the brain tumor center would have never known the tissue samples were there. Anyway, they’ll take between three and five business days to determine their official diagnosis. If Mike gets back to his normal self, we should be able to go up there next week to have them look at him. He has to be able to knowingly sign all sorts of paperwork in order for us to do that. I’m supposed to call them when he is able to function more normally.

Since I’m having to be the pro-active one and take care of so many things myself that I shouldn’t have to be doing, I’ve decided to take full advantage of the sitter they have available here at the hospital. Basically, someone will come in tonight to sit with Mike and make sure he doesn’t make any escapes. I’m going to go home and rest in my own bed, so I’ll be ready to fight any more battles I have to tomorrow.

Again, we can’t thank all of you enough for all of your thoughts and prayers. I know that is the only thing that has kept me from completely going over the edge! (Although I realize some of you may think I went over the edge years ago!)

Doing Better, but Still Some Concern

2008-01-14T23:23:00.000-05:00

My apologies for the delay in the update on the blog. I was waiting for the doctor to come by before updating, but the neurosurgeons around here don’t give a time frame of when they’ll be by, and the doctor today didn’t come by until almost 5:00. (It would have been nice to have known that they were going to be that late then I could have gone to my mother’s to spend some time with my girls.) I went home right after that to shower, and had to deal with a few things when I returned to the hospital.

The good news is that Mike was coherent today. Honestly, yesterday he looked like he was waiting on death’s doorstep. Thank you for all of your prayers. I’m guessing his lucidity is what resulted in him NOT having a CT scan this morning, but as seems to be norm around here, I’m not told a whole lot, so that’s just a hunch. When I came back up to the hospital Sunday night after running home, Mike wanted some of my Rush’s french fries. He was chowing them down, so my sister went back to Rush’s to get him some chicken. He ate almost all of that as well. Who knew that Rush’s had such healing power?!? Mike kept all of the food down and woke up at his normal 5:30am this morning; he was able to talk with what seemed normalcy though he had a little confusion about some things, such as where he was. Throughout the day Mike was confused about where he was, but he was able to answer most other general questions and hold conversations very well. As the evening has worn on, Mike has become a little more delusional about where he is and his surroundings. This is causing some problems in keeping him contained in his bed. He’s hooked up to quite a few things, so just hopping out of bed isn’t such a hot idea. I don’t think I’ll be getting much sleep this evening. Thank goodness Mike’s friend Phillip (who has driven here all the way from San Antonio) is staying the night at the hospital with me. He’s definitely been a tremendous help in talking with Mike tonight, but I'm afraid he'll be suffering from sleep deprivation along with me. Hopefully, Mike will continue to get better and we won’t have to deal with these delusions tomorrow.

No word from Duke today. My guess is that they’re doing their own pathology report on the tissue sample sent to them on Friday before calling to set up anything.

The Latest

2008-01-13T15:32:00.000-05:00

The neurosurgeon on call this weekend thinks Mike’s brain may be swelling again which is causing the delay in his recovery. He has increased the dose of steroids. They ran some blood tests and found that his sodium is low, so they are giving him some of that as well. The plan right now is to see how those two things help then they will probably run a CT scan on him in the morning. If Mike continues to not recover well, they may go ahead and do another surgery to debulk the tumor as much as possible. There are risks involved in this because the tumor has spread to both parts of his brain.

I finally got a written preliminary report. (The info I wrote about earlier just came from the doctor right after surgery.) They won’t call it a final report because they have sent tissue samples to Johns Hopkins for a more detailed reading. This is in addition to the sample they have sent to Duke. The preliminary diagnosis reads, “High grade malignant neoplasm, pending expert consultation.” The report does state that the tumor appears to be a glioblastoma.

Still Recovering from the Biopsy

2008-01-13T10:09:00.000-05:00

It’s pretty much more of the same as far as Mike’s recovery from the biopsy goes. He’s able to do the motor skills when prompted, but he hasn’t been very verbal at all. Sometimes he’ll know who I am and sometimes he won’t. He pretty much slept all day yesterday and slept through the night last night. (Friday night he was restless and didn’t sleep as well—he did a lot of tossing and turning, tried to get out of bed, and was really hot.) The doctor who did rounds yesterday—he didn’t do the biopsy, but he is in the same practice—said that it could take seven to ten days to recover from the bleeding in the biopsy area. So, once again, please hold off on visits at this time because Mike won’t be able to hold a conversation with you even if he happens to be awake. Good thing that faculty at RNE is so wonderful and taking care of the Chick-fil-A’s and ice cold waters at lunch, so Mike won’t be worried about that when he’s more back to his normal self. When he comes to, I think I may just tell him they’re selling faster than ever.

On Friday I requested venodynes for Mike’s legs to help his circulation since he hasn’t been able to get out of bed, and after checking with the doctor, the nurse brought them in. These simulate movement on his legs and help prevent blood clots. Before you go thinking I’m that smart, I didn’t think of getting these on my own. Mike’s cousin, who is a nurse anesthetist, told me I should ask for them. It’s pretty nice to have someone like her who knows what sort of things can or should be done at a hospital.

I got confirmation yesterday that the hospital did send all of Mike’s paperwork and tissue samples to Duke. We’re still waiting on the official pathology report from this hospital.

On a positive note, I’m now only four pounds away form my pre-pregnancy weight. If things keep up like they are now, I may end up at the dream weight I’ve had for ten years now.

Thank you again for all of your comments to the blog, phone messages, e-mails, cards, and especially prayers. I haven’t been able to respond to all of your messages, but I have received them and they are greatly appreciated. Mike and I are so blessed to have such loving and caring friends and family. Keep the prayers going…we know God is the only physician who can heal Mike.

Friday Update

2008-01-11T11:09:00.000-05:00

Mike is still resting a lot and not very verbal; he still has some difficulty answering basic questions. The doctor came by this morning and said that the CT scan Mike had done Wednesday night showed a little bit of bleeding in the biopsy area, so that is what is causing the recovery to take a little longer. He said it will probably be early next week before he is released from the hospital.

I gave the doctor a copy of the letter Duke e-mailed me and told him all of that stuff needed to be sent today. He acted at first as if they would wait until the pathology report came back, but I told him to go ahead and FedEx a tissue sample today because they were going to do their own report on it anyway. My pushiness must be working…the nurse just came in for me to sign a release for them to fax all of the written records thus far to Duke.

Duke called me this morning. The physician’s assistant I talked with said he would call me on Monday and we would probably schedule a tentative date for us to come up there then. He said we can’t begin any treatment until two weeks after the biopsy, so I’m not sure when we’ll be heading up that way.

Because Mike needs his rest and isn’t able to talk a whole lot, it’s still a good idea to not visit him at this point. I’ll let you all know as soon as I think he can handle visitors.

Duke

2008-01-10T14:16:00.000-05:00

JSYK (that's "just so you know" for all of you non-texters--not that I know much about texting myself), I talked with Duke today. I am in the process of getting in touch with the neurosurgeon here to FedEx copies of Mike's MRI's and a sample tissue from the biopsy to them. Duke wants to do a reading of the tissue themselves. The doctor here has known since yesterday that we're looking at going to Duke, but they seem to lollygag a bit around here, so I'm trying to go ahead and get that ball rolling.

New Room and Preliminary Info

2008-01-10T10:46:00.000-05:00

Well, we’ve moved from the Marriot to the Motel 6, but we still have the same quality of towels. We’ve changed rooms and are now in the old part of the hospital. Last night and this morning Mike did fine with his motor skills when prompted (squeezing fingers, pushing toes, holding up fingers, sticking out his tongue) but has had more difficulty with the verbal end of things. He has been sleeping a lot since yesterday’s surgery and has been having a difficult time answering some basic questions, so we’ve moved to what’s called “step down.” It’s a step down from ICU but a step up from where he was. They will monitor him a little more closely here.

Preliminary Report. The doctor can’t say with 100% certainty until we get the pathology report back from the biopsy, but it looks like Mike’s tumor is cancerous and what is known as glioblastoma. For those of you who knew Eric Schell, this is what he had. We really can’t make any decisions about what to do until we get that official report back, but I suspect we’ll end up at Duke if the doctor’s suspicions are correct. For those of you who don’t know, Eric was my boss before he passed away, and I remember from our conversations that he said Duke and some place in Texas were the most progressive in dealing with this particular type of tumor.

Mike is resting a lot and is still not able to verbalize well at this point, so I think it’s best to hold off on visits. As soon as I think he can handle some visitors, I’ll post it on the blog.

Mike’s cousin found a great website that a long-term survivor of glioblastoma wrote. It’s a guide to help others who are diagnosed with the tumor. It is a little old but gives some good general information. There is a lot of misinformation out there on the web, so you do have to be careful about what you read. I was trying to create a link to this website on the sidebar of this blog, but the hospital network is blocking me from doing that for some reason, so I’ll just give the link here in case you want to read it: http://home.earthlink.net/~sdepesa

Evening Update

2008-01-09T20:08:00.000-05:00

Mike became a little sick this afternoon necessitating a CT scan of his brain. It came back okay, so we are still in the same room. Mike is still not himself, so please hold off on visiting until I update the blog.

We have been reading your comments and appreciate all of your prayers and support.

Biopsy

2008-01-09T12:29:00.000-05:00

Mike made it through the biopsy fine; he is recovering now. He did not have to go to ICU and is in the same room he's been in all week. Mike is still pretty out of it, so today probably won't be a good day for visitors.

The doctor said they may have some general information by the end of the day, but we won't have a full report for three days or so. (I'm assuming that's three business days.)

MRI and Biopsy Update

2008-01-08T11:39:00.000-05:00

We’re sitting around waiting on the hospital to call Mike down to have his MRI this morning. He’s having what is called a stealth MRI, where they put about 10 plastic disks called “fiducels” (fuh-doo-culs) on his head. He has to keep them there through the biopsy tomorrow. They pretty much just work him in between scheduled MRI’s, so we have no idea what time it will be done. It could be anytime between now and 8:00 tonight.

Here’s the deal on the biopsy scheduled for tomorrow:

It will be a “needle biopsy” which is the least intrusive. It makes the smallest hole and has the least recovery time. They’ll just put staples in his head afterwards. (I think I’ll swing by Office Max today and pick up some extra staples, just so they don’t run out.)

Mike can have nothing to eat or drink after midnight tonight. They’ll take Mike down about 6:00 in the morning to start prepping him. They’ll take him to pre-op, and the actual surgery will begin around 7:30 or 7:45.

The surgery itself will take about an hour, but he’ll be down there between an hour and a half and two hours. During the surgery, they will send a frozen section of the tumor down to pathology to make sure they have what they need to read it, just so they don’t have to repeat this entire process in case they don’t get the right thing to begin with. They have told us it will take four to five days for the results, but I’m pushing for a preliminary report tomorrow.

Today's Info

2008-01-07T16:25:00.001-05:00

Below are some questions we asked the physician's assistant today and the answers he gave us.

What are the odds that the CT scan and MRI are wrong?
One in a million. That gives us a chance…somebody’s got to win the lottery.

Where is the tumor located?
In the front midline of the brain.

What does that part of the brain control?
Cognitive ability—the ability to think clearly

What is the likelihood of seizures?
Minimal, but they are possible

What We Know Now

2008-01-06T17:38:00.000-05:00

It takes a lot of time to write these posts with detail. As soon as I have the time, I’ll write the details of what happened when we went to urgent care then on to the hospital.

In the mean time, here’s what we know at this point (which isn't a whole heck of a lot):

Mike had a CT scan on Wednesday that indicated he has a brain tumor that measures 4.5 centimeters by 4.7 centimeters. He had an MRI done on Thursday and it confirmed the findings of the CT scan.

When we went to the doctor, his brain was swelling, and that is what caused his odd behaviors.

He has been in the hospital since Wednesday night and has been taking steroids to reduce the swelling.

Once the swelling is down, he will have a biopsy to determine exactly what kind of tumor he has and our options for treating it. He will have an MRI on Tuesday to check on the swelling and a biopsy is tentatively scheduled for Wednesday. It will take four to five days to get the results from the biopsy.

First Signs

2008-01-06T16:54:00.000-05:00

Mike began having headaches and dizziness in June. I noticed the following odd behaviors beginning around Christmas:
Difficulty concentrating/delayed response when answering questions
Loses train of thought
Not going out to buy general household items
Sleeping late
Staying around the house all day.
Not going to work (even though school was out for Christmas break, Mike usually goes in on his days off to get things done)
Not watching college football games
Not checking cell phone messages
No concept of time