THIRTEEN POINT EIGHT

Johnny is taking this chemo business all in stride. Last night we completed our list of "pre-chemo" to-do's and tackled Round Four today.

We spoke briefly with Dr. Ansari and just reviewed that things are going according to plan. I gave him two names that a high school friend provided for me from Johns-Hopkins and he told me to hang on to them. He also said that one liver specialist at IU Med Center in Indy did his training at Johns-Hopkins, which lead us to believe that he is leaning towards IU. Perfectly fine with us, but we are still keeping our options open. Whoever is the best match for Johnny will be the one doing his surgery. End of discussion.

Johnny's port continues to plague us with issues. Although I have resolved myself to the fact that it is never going to be a thing of beauty, I don't want it acting up. For the last two chemo infusions, the nurse has had to flush it several times, lay Johnny flat on his back, raise his left arm above his head while he whistles the theme from Love Boat, just to draw labs from the stupid thing. It always flushes just fine, but drawing back on it causes issues. Today they had to take his labs from a vein and not the port. They put something in the port called "Cath Clear" or something to that effect. That is supposed to remove the protein buildup at the end of the catheter. Once she did that, of course, she could draw back on it with no problems. Whew.

I was getting a little agitated and had to walk away while she was attempting to clear the port. My frustration stems from the fact that ISN'T IT ENOUGH THAT HE HAS CANCER AND HAS TO HAVE CHEMO AND HE REALLY DOESN'T NEED ANYTHING ELSE TO GO WRONG, ESPECIALLY FROM THE STUPID PORT THAT THEY PUT IN TO MAKE THINGS EASIER. . . yeah, so I just walked around for a few minutes until the labs were drawn and I could speak in lower case letters again.

The nurse brought us a copy of the labs as they were completed. The so-so news is that his platelets continued to fall. This week they are only 116 (down from 128). We asked how low they have to get before they will not let you have your treatments. The nurse told us at about 10 they will send us for an infusion of platelets and we would have to wait for treatment until the number came up. TEN? Holy moly -- I quit worrying right there. We have quite a ways to go before that. I'll just continue to pray (and ask you to do the same) that they don't fall too much more.

All of his other labs were quite good actually (considering they weren't fasting labs). One of his lab values, however, was SPECTACULAR! Remember a couple weeks ago I talked about the CEA level (cancer lab)? When Johnny was diagnosed it was 60.4. A couple weeks ago they drew it and it was 34.1. Today, just two weeks later, it was . . . . . drum roll, please . . . . . 13.8! That's right!

THIRTEEN POINT EIGHT!

That is less than one-quarter of the original lab value. I think we are moving in the right direction, folks. And now, more than ever, I am soooooo anxious to see what the next scans will look like. Actually, I haven't seen the original pictures. Can you believe it? Me, the x-ray tech-by-trade, hasn't even viewed the images.

To be perfectly honest it is because I was too scared to look. I didn't want to see the evilness that was living inside my Johnny. Now that I know something positive is happening, I want to see the next set first and then the first set after that. That probably sounds really weird, but I want to know where we are before I see what we started with. Coping mechanism? I think so.

Johnny feels relatively good for a dude on chemo. He continues to have the cold sensitivity. That is actually getting worse and lasts the entire time. It finally starts to get a wee bit better over the weekend before he has to start chemo again. At no point is he able to reach in the freezer and pull something out. Too painful for his hands. Today, when he got home from the infusion he had no shoes or socks on and found standing on the wood floors to cold for his feet to tolerate. He couldn't drink the Gatorade that was sitting at room temp, either. But, really, in the grand scheme of things, if that is as bad as it gets, then we are doing pretty well, dontcha think?

He just mentioned that his tummy is getting a little upset right now, so I am going to get him his meds and put him to bed.

Please pray for him. Although things are going well, I still worry like you wouldn't believe. I just really want this cancer crap to be over as quickly as possible.

Prepping, Packing and Planning

OK, OK, I hear you! It has been 4 days since I last posted, and boy oh boy, you guys let me know!

Like they say, "No news is good news." Right? Right! (Who is "they"? "They" do a lot of talking and get quoted often.)

So, did you all see the article in the Niles Daily Star? Jessica Sieff interviewed Johnny and me this week and put together a very nice article, if I can be so bold as to say that. . . sure I can. If you would like to check it out, go HERE. (Jessica, it was so nice to meet you! Thanks for the great article!)

Once again we come to the weekend before chemo. I spend a good part of the weekend "prepping". I like to have our room really clean: clean sheets, clean blankets, clean pillows, clean bathroom. . . you know, clean. They way I look at it is Johnny will have to spend the next few days in there and it should be as nice as possible for him. I don't want him to have to trip over a pile of dirty clothes if he has to make a quick trip to the little boys room. I also like to have the rest of the house "in order" so that it doesn't drive me nuts while I putter around worrying about Johnny. Most of all, I think I do it so that I don't sit here and mope/dwell on upcoming chemo.

I can't believe this is only the fourth treatment. I told Johnny the other night that I feel like we have been doing this a lot longer than just 6 weeks. It became our new "normal" so quickly. Will that make the next 8 cycles go quickly or more slowly? I have no idea.

Johnny was able to go to all of the football practices this past week. I know he enjoys coaching, and I am so happy that this is even possible for him. What I find funny is that the Brawley Boys (Johnny, Jimmy and Danny -- but not Pooh) are all football coaches for the Niles program. Johnny coaches 7th grade, Jimmy coaches 9th grade, and Danny is the Grand Poobah -- the Varsity Coach. The only problem is: None of them have boys playing football this year. It just goes to show you that they do what they love and love what they do. And, they want the same for their kids. Johnny would never "make" our boys play a sport that they didn't want to play, and this just proves it. Quinn is so completely in to hunting, that football just doesn't fit into his schedule. Jake is a soccer player and is currently involved with two teams. I spend most of my time running around trying to catch up with everyone after work. (Johnny did tell me that I don't have to come to his games to watch him coach, if I don't want to.)

When Johnny used to umpire at Howard Township before we had kids, I would drive out to Pepper Martin Park and watch him. One time a mom in the bleachers asked who I was there to watch, which kid was mine.

"I'm here to watch the ump," was my reply.
"Why?" was hers.
"I think he is so hot," I told her.
"You know he is married, don't you?"
"Maybe he fools around." :O}
"Oh, I don't think so. He is too nice for that."

Finally I fessed up and told her I was the wife. I also thanked her for thinking that Johnny was nice. Comments like that make a girl feel pretty good about her guy.

We are looking forward to camping next weekend. We have been camping over Labor Day weekend for the past 10 years or so. I think we have only missed one time, due to a trip to the Florida Keys. There are between 10-15 families from Niles that go to Twin Mills, and the group morphs from year to year. Quinn and Jake look forward to this trip all year long.

At risk of sounding like a broken record, the schedule of events for Johnny are rapidly approaching. Please mark your calendars and save the dates!

Thursday, September 24: Escanaba in Da Moonlight at the Bristol Opera House. Doors open at 7, production begins at 7:30. Johnny and I are looking forward to spending an evening with 190 or so of our friends. This production is absolutely hilarious. Please join us! Please email me (toad4mimi@aol.com) with the number of tickets you would like and the amount you would like to donate per ticket. Congratulations to AJ and Kelly Gaideski for being the first to request tickets!

Saturday, October 10: The Fighting Toad Golf Outing, Hampshire Country Club, Dowagiac, Michigan. 9:30 shot gun start. This outing is going to be amazing. You won't believe the prizes that are available including cars and trips! We are gathering up registrations now and we look forward to seeing everyone there, as well.

Friday, October 16: The Brawley Family Fish Fry. This is the perennial favorite! John and all of his friends have been very busy fishing their way through the summer to provide for this fish fry (and many others!) Thanks, Barry and Danette, for all the fish you have been providing as well!

Johnny and I consider ourselves the luckiest people to be surrounded by so many that not only want to help, but have taken on such large tasks in order to allow others to help as well. This is very humbling and we want to thank you all for what you have done for us. We may never be able to pay you all back, but please know that our goal is to continue to pay it forward.

Quick Update . . .

Johnny is his normal self: working, coaching football, driving me crazy. All that is so good. We can just about forget about chemotherapy for our "good" week. Makes facing the next round all that much more tolerable.

Reports on the Golf Outing are FANTASTIC! Larry has assured me that there are confirmed golfers, but still LOTS of openings. Just heard that there is a possibility of TWO cars as prizes for two separate holes-in-one. In case you don't get it on the first try, there is another hole that you can win big on! Not too shabby! Please get your foursome together and send in the registrations. Even if you are a "lone golfer", send in your registration and let it be known that you need a team. We can accomodate that! Volunteers and prize donations can be sent via the same form that is printable from the blog. We have a meeting planned soon, and I'll give updates as they are available.

The stage production of Escanaba in Da Moonlight is also receiving great response! There is still plenty of room available, but ticket sales are picking up quickly! Please don't wait if you are interested in attending. This is a really great opportunity to see a show and spend quality time with 190 of Johnny's closest friends! The ticket sales have to go through Johnny since this is a donated production. Please do not contact the Bristol Opera House or the Elkhart Civic Theatre. Although they are graciously donating this production, they are not handling the ticket sales in any way. Please email me directly (or you can call me, too) and let me know the number of tickets you would like and the amount that you would like to donate per ticket (minimum $10 donation). Checks can be made payable to Johnny Brawley and sent to our home address. Once I know exactly how we will handle ticket distribution, I'll let you all know. If payment has been received, then the tickets will automatically be sent once we receive them.

We are on our way to our 1985 Class Reunion Meeting. If you are from the Niles High School Class of 1985, please join Facebook so you are readily available to receive information. We are so excited about the reunion and want it to be a great success!

Yoopers and the Toad

Back by popular demand, Elkhart Civic Theatre is proud to open its 2009-2010 Main Stage Season and present Jeff Daniels’ Yooper blockbuster Escanaba In Da Moonlight. This hilarious comedy will have you laughing for weeks to come.

And you want to know something even better? Friends of The Fighting Toad have an EXCLUSIVE opportunity to see this stage performance at the Bristol Opera House on Thursday, September 24th. Seriously, this one performance is being held exclusively for us! "How is this possible?" you may ask.

Well . . . Stephanie Stowe Salisbury is the director of this production. It just so happens that her dad and Johnny's dad are cousins. When she heard about Johnny's diagnosis, she wanted to help. Since she is one of those creative types, she came up with the idea of having an exclusive showing of this production just for Johnny and voila! A great night of fabulous entertainment awaits us all. The Opera House is giving an amazing discount to allow this performance, and the actors and actresses are donating their performances. Is that not the most awesome thing on the planet?

I know you are all just dying to know how you can get tickets and join The Toad himself at this special presentation. Here's how:

• Contact me by message here on the blog, Facebook, or regular email (toad4mimi@aol.com) with subject title Escanaba Tickets and let me know how many tickets you would like.
• Tickets are a minimum $10 donation. Higher donation denominations will receive "choice" seating. The highest donation will get you seated right next to The Toad (and the Mrs., of course) Front and Center. Donations will be kept completely confidential (if sent via FB message or email). Please include in your message the amount per ticket that you would like to donate.
• Seating is limited to the first 191 people. This is a small theatre and there isn't a bad seat in the house.

We are so honored to have this opportunity and can't believe how perfect the performance is as it relates to Johnny. The production is hilarious and when it played at the Bristol Opera House previously it SOLD OUT -- even after they added three additional shows!

In a nutshell, the show (if you've seen the movie, you know how HILARIOUS it is) is about 5 Yoopers (guys from the Upper Peninsula) at deer camp on the eve of Opening Day of deer season. Is this not the absolute perfect production for Johnny? And since it is happening just before hunting season it is all the more appropriate!

The Bristol Opera House is an easy drive . . . just off the Toll Road at the Bristol exit. Probably about 35 - 40 minutes from Niles. Even closer for my South Bend, Mishawaka, Elkhart, and Edwardsburg friends!

Oh, my gosh. . . I am so excited about this! Get a hold of me soon because once I reach 191, that's it folks, there just aren't any more seats than that!

I am bouncing in my seat with excitement . . .

Man Cave and Other Rainy Day Activities

Just a quick post to let you all know that we are moving very quickly into our "normal" week.

Johnny is already out of the house and talking football strategy with Varsity Coach Brawley. He will be coaching 7th grade football with the very generous assistance of Coach Craig. Johnny enjoys coaching, but obviously when he was diagnosed we both assumed that wasn't going to happen this year. He even talked to Danny about it. Coach Craig agreed to be the assistant coach and will be able to help Johnny for the entire season; otherwise, it just isn't possible. Jim, we appreciate the time and effort that you are willing to put into this so that Johnny can continue (in his limited capacity) with coaching. Your generosity is overwhelming. (Again, this is where you wish there was something more to say than "thank you". Seems like there should be something bigger than those two little words.)

I will be spending this gloriously rainy day in the basement. If anyone were to peek into the storage section of our basement, I would literally curl up from embarassment. It is an atrocity. So, I have promised myself that I will spend 4 hours today cleaning only the basement. If that isn't enough to get the job done, I will repeat the effort tomorrow.

While we are working down there, the more important mission to accomplish is finishing Jake's "Man Cave". Jake found an old TV with an attached VCR. He also found the motherload of all of our old VHS tapes. He started to drag them all into his room, creating a wall of tapes. That just wouldn't do. Our solution was to create a space of his own in the creepy part of the basement. My friend, Joyce, donated a couple papasan chairs, a book shelf and a TV stand/table to the effort. Jake LOVES the chairs! My brother-in-law, Alan, is even running cable back to the TV so that it isn't just for tapes. I bought a cheapo piece of carpet to "warm" it up a bit. I am even considering buying a small dorm frig for back there. I would have loved a place to hide out when I was a kid, wouldn't you? Quinn tends to dominate the family room, and I think Jake needs a place that he gets to dominate (and I don't have to see the mess of it all).

My mom is on her way home from the hospital right now. Surgery went very well and now the difficult task of healing remains. She will be able to sleep better in her own home. Thanks to everyone that offered up prayers for her. Please continue -- she still has a lot of healing to do.

Golf Reminder:

Please continue to send in the golf registration forms, volunteer information, or prize/raffle donations. All information can be sent in to the address listed on the registration form that you can print from the bottom of the blog. As with any event, it is always so much easier if you get the registration taken care of earlier rather than later. If you have ever been involved in the planning process of something like this, you can appreciate how helpful it is to have it taken care of early.


Thanks again for taking care of my family with prayers, good vibes, electric karma -- whatever your mode may be, we appreciate it all.

And to Deegan -- Toad thinks the toad is AWESOME! You are a good little buddy to Johnny.