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.

Praise the Lord and Pass the Bacitracin

Ok, I know nobody will believe this, but the infection is GONE. Is that the Power of Prayer or the incredible care I provide the Toad? I'd like to think it is a little of both.

After harassing the doctor's offices many times yesterday because I was in near panic mode, we finally settled on the fact that he wasn't going to be seen until this morning. I wasn't happy about it, but that is how it had to be. Dr. DD's office did tell me to clean out the wound with some peroxide, which I did. I also used some antibacterial/antimicrobial soap around the wound site and then covered it with sterile gauze. I don't know if that did the trick, or if it was the massive quantities of prayers inundating the Good Lord. Whatever, I'll take it. Peace of mind is a beautiful thing. I will always be willing to pay the co-pay for good old fashioned Peace of Mind!

We saw Dr. DD this morning bright and early (thanks to harassing the staff) and he was totally unimpressed by the wound. "Granular tissues" or something like that . . . I asked him if it bothered him that the subcutaneous sutures were exposed and he said very simply, "No." He explained that Johnny will take months to heal in this area. This is due in large part to the chemotherapy. Chemo patients heal much differently and over a longer period of time than others. He said that although it looks bad, it really isn't. I asked if he thought Johnny should have an antibiotic, you know, just in case. He said very simply, "No." Then he and Johnny went off on a tangent about baseball, football, the kids, having a teenager, mission trips to Guatemala, blah blah blah. . . (Oh, he did tell me that he liked my bracelet -- it is my mexican-inspired bracelet from my best friend Laurie -- mad props, Laurie Lou!) Then we were out of there and on our way home with Peace of Mind in our pockets.

So, again I thank you all for keeping Johnny in your prayers. We continue to see how well it works.

Now on to other matters. My mom just got out of surgery (PRAY FOR HER, TOO, PLEASE!) for a long-standing issue with hernia repairs gone bad. Initially she had a hernia repair done for what appeared to be a "simple" hernia. Never say simple where my mother is concerned. The poor dear, if it can go wrong with her it most likely will. Anyway, to repair the hernia, the doctor used a mesh overlay (very commonly used, standard practice). My mom had a reaction to this mesh and had to go to the Mayo Clinic for a surgery to have the mesh removed. Obviously removing the mesh meant that she now has the hernia to deal with all over again. She needed time to recover from the involved process of removing the mesh so hernia repair surgery was delayed. Finally, today was the day to have the hernias repaired once and for all (fingers crossed). There were a total of three hernias that required repair and the doctor was able to fix them all. He said that things are looking pretty good (keep your fingers crossed) and that the bowel went back into place with relative ease. She will be in the hospital (SJRMC) for a day or two and will not be able to lift anything for a very long time.

I just hope and pray this is it for her. If you know my mom, you know that there are multiple health problems that she has dealt with for most of her adult life. It would be really nice if she could just heal up and have several years in a row that don't require surgery/hospitalization. Especially since she has no insurance . . . yeah, that just blows.

Well, people, you know what to do. Pray, pray, pray.

1 Thessalonians 5:17 says to "Pray without ceasing." So if you aren't praying right now, you are WRONG!

Crap-o-la

Addendum:

We can't do anything until tomorrow. Johnny will see Dr. Delle Donne at 8:30 and he will let us know what the deal is. I know it is infected, I just want to know how we are going to deal with it.

I'll tell you how I want to deal with it: I want Dr. DD to prep and drape the incision in the usual sterile fashion. Next, open the incision, swab and send aerobic and anaerobic cultures to the lab, debride and clean it out, irrigate it with a couple grams of Ancef, trim the edges of the incision and resuture it back together with some nice tight stitches - preferably some 3-0 and 4-0 Vicryl in running stitches. Then I'd like him to use a little Benzoin over the incision, steri-strip over that and apply a nice sterile dressing with a non-adherent dressing, such as Telfa. He should also send us home with a high-dose antibiotic prescription such as Ciprofloxacin 500 mg PO q 12 hours. But, you know, however he wants to handle it is fine. Really.

Also, thank you Lake Family for providing us with dinner this evening. Emily, sorry I wasn't here when you stopped by. We really enjoyed the veggie soup and the biscuits were super. We are saving the pie a la mode for snack time. And I love the flowers! Thanks so very much.

Pray like the dickens, people. This infection scare has me in a real tizzy.


Initial Post:

It looks like Johnny's port incision is infected. We are trying to get him in to the doctor's office right now. I'll post more later, but if you don't mind . . . pray like crazy for the infection fighters to do their job. This is making me sick to my stomach. And I'm not even the one on chemo.

The You-Know-Whats Are Back

Without going into detail . . .

The You-Know-Whats are back and you know what to do. That's all I have to say about that!! Ever.

Toad Wins Round Three

Johnny slept like a baby last night. A baby completely loaded on Zofran, Emend, Vicodin, Zantac, Sennokot, and Lunesta, that is. But, whatever. He slept like a baby. I felt like I did when I brought Quinn home from the hospital. I stayed awake most of the night just to make sure he was sleeping like a baby. I would hear the little noise the 5-FU pump makes approximately every 7.5 minutes. I would hear him breathe in. I would hear him breathe out. I would heard the air conditioner kick in and think, "You better not wake Johnny!" and then I would listen to see if he did wake up. Which he didn't. I don't know what my deal was. Then just as I was getting good and tired and really ready for a good night's sleep, my alarm clock went off. Why does that always happen?

Last night Johnny had a little rough patch around 10 p.m. He got a little nauseated and had a pretty bad headache. Although, once he took some additional meds, he felt better very quickly. Basically at that point he was in bed for the night anyway, so once I got him all hocked up on his drugs the rest of the night was good. The very first thing out of his mouth this morning was, "I feel pretty good . . . . . . . . . . PAUSE . . . . . . . . . . yep, I do. I feel good." He had to make sure he wasn't dreaming, I guess.

Crazy MIL came over to Toad-sit. He behaved himself very nicely for his mother, sleeping for her most of the day and even getting up to eat and take his medicine. What a good boy. All kidding aside, if Ginger wasn't able to come over and take care of him, I wouldn't be able to go to work on the days after chemo. She totally makes it possible for me to maintain some kind of a work schedule. (My boss should call her and thank her personally!) You know how it is, though. Other than your spouse, the only person that can take care of you the right way is your mom. (Actually, sometimes the spouse isn't so great at it!) Oh, that reminds me of a story. . . .

When Johnny and I were newly-weds and living in our crappy little house on M-140 (read that, "Love Shack"), I was sick with strep throat. Really, really sick with strep throat. I had a fever and just needed some TLC and chicken noodle soup. After Johnny got home from golfing (!!! Hello.) I asked him to please make me some soup. Seriously, I hadn't been able to move off of the couch to do it myself and had to wait for him to finish his golf game to do it for me. So I hear him in the kitchen slamming stuff around and cursing. After about a minute and a half, he walks into the living room where I am in the fetal position on the couch and HANDS ME THE CAN OF SOUP, THE CAN OPENER AND THE PAN TO DUMP IT IN.

"I can't figure out how to work this can opener."

Um, yeah. Can you just imagine how happy this made me? Can you guess what I did next? No, I didn't clock him upside his head with the can, the opener or the pan. I called my mom. My mom came out and fixed me some soup and made everything better. Details are fuzzy after I got the soup, but she may have given him a lesson on how to take care of me a little better after that. I'm not sure.

But, I digress. . .

Since Ginger had the whole day to spend in my house, she did her usual thing and lounged around and ate bon-bons all day.

Oh, wait, what I meant to say was that she did all my laundry, had the kids put it all away (!!), made two kinds of chicken salad -- you know for those that like grapes and walnuts and for those that don't -- served them on cute little mini-croissants, and cleaned the carpet in the family room. I know! You are probably wondering the same thing I am. Why the hell didn't she clean the carpet in the boy's bedrooms? Don't you worry your pretty little heads. She'll be back tomorrow.

What did your mother-in-law do for you today?

OK, I just re-read what I have written so far. I kinda sound like a spoiled brat. "Wah-wah. I was awake all night. Johnny didn't take good care of me. Ginger didn't clean ALL of the carpets." Please don't send me hate mail about this. I've grown accustomed to being treated a certain way, and when that is challenged I get cranky. :O)

Thanks to John and Sally Wallace for bringing us our favorite Post-Chemo meal: chicken noodle soup and mashed potatoes (REAL mashed potatoes!) Not to mention rolls and an assortment of delightful desserts. (Yaya, it is hard to eat the brownies without you. . . this makes me miss you terribly.)

All-in-all I think Johnny has definitely scored a win on his card for Round Three. I hope this is how it will continue, because I can tell he feels very confident with how things are going. His confidence makes me so much stronger. I still worry about his platelets and the rest of the lab values. That is my prayer request for this week. . . that Johnny's lab values rebound and get back into the "normal" range. Join me on this, will you?

Round Three

Round Three is in the bag! Only three more cycles until another set of scans. I am really anxious to find out how much the chemo has done thus far. Nervous and excited at the same time.

Today I asked for a copy of Johnny's lab results. I'm curious like that, and besides they are his labs so we are entitled to them, no? They had told us before starting the chemo that his platelets were on the low side, not critical or too low to have chemo, but low. I guess I'd rather his platelets be low than his white blood cells (infection fighters) -- if something has to be low.

One item of interest was his CEA level. This is the "cancer" lab that was 60.4 on his first set of labs prior to chemo starting. Today it was 34.1. Now, I have no idea how this translates to the effectiveness of the chemo. But I like to think that it means that Johnny's butt-smokin' hot bod has been working so hard that almost half of the cancer is gone already. I like to think that -- I don't know that -- but it sounds good.

We asked Dr. Ansari about the published studies that recently received a lot of press related to aspirin increasing the overall positive outcomes for colorectal cancer patients. He said that everyone should be taking aspirin. It is really quite a remarkable little pill! Aspirin inhibits the COX-2 enzyme that is commonly found in tumors of the colon and rectum so it makes sense that it would increase overall survivability -- and increase of more than 29% in some studies. Absolutely amazing! Not to mention the benefit for decreasing the likelihood of strokes and heart attacks. So, we have added a full strength aspirin a day to Johnny's ever-increasing list of medicines. I decided that I am going to start taking one every day, too.

We felt better prepared today: Nausea meds, heartburn meds, constipation meds, aspirin, sleep aids, prune juice, Milk of Magnesia, mashed potatoes, chicken noodle soup, lemon-lime Gatorade and grape Kool-aid. Everything was lined up and ready to go when we got home. I like feeling prepared. Makes me feel like I can actually help him a little bit when I have everything he needs.

Please continue to leave comments and messages. During chemo week, Johnny likes me to read them to him (usually starting on Wednesday when he wakes up from his 36 hour hap). He reads them by himself the rest of the time. They make us both really happy.

Thanks to everyone who continues to feed my family. AJ and Kelly, we enjoyed the visit with you guys this evening. We LOVED dinner! The chicken and noodles were fantastic -- and the banana bread is already gone! (Jake really liked that!)

Please continue pray for my Johnny. Especially that his lab values rebound quickly so that he doesn't have to start getting shots to improve them. He hates needles and these shots won't go through his port.

Please continue to pray for the Cramer's.

Happy Birthday, Angie! Love you, sis.

Let's Talk Golf!

It is Saturday and this is where I start to dread Monday. I'm trying to change my attitude about it, thinking of Chemo instead as the life-saving measure that it is. Instead I usually end up thinking of it as not having Johnny around for 4 or 5 days. Even though there is NO PAIN (I stress this for friends that still think Johnny is writhing in pain for days on end), I repeat -- NO PAIN . . . he is just soooooo doggone exhausted that he basically can only sleep.

We are organizing ourselves for Monday. I have a to-do list so that we don't forget the valuable lessons that we have learned from the first two rounds. Shave chest, start constipation meds, yada yada yada . . .

Congratulations to Jimmy! He saw Dr. O'dea for his colonoscopy on Friday and got the "ALL CLEAR"! Woooo Hoooo! We are so extremely relieved. This has weighed heavily on Johnny's mind/heart since his diagnosis and won't be completely settled until Danny and Pooh have theirs done.

Let's Talk Golf!

We had a meeting on Thursday evening for the Golf Outing, and I have to tell you . . . it is going to be FREAKING AMAZING!!! Are you at all interested in winning say . . . . A NEW CAR? Or what about a CHARTERED FISHING TRIP? The quantity and caliber of prizes is OVERWHELMING!!! The details of the whole day are well under way, but a simple little hole-in-one can win you A NEW CAR!!! I know . . . I'm just a little verklempt myself.

What I really need you to do is simple. Please send in your registration forms as early as you can (you know, like today would be good). We have already had a great response, but obviously the more the merrier. I really want the organizers of this great day to have it as easy as possible, and it would be so much easier for them if they could get the registrations forms taken care of sooner rather than later.

Many people have asked if they can donate prizes for the raffle, and of course, the answer is YES! Please contact either me or Dave Schiele (cell 269-240-2039) or Larry Larson (whose number is listed on the blog sidebar). There are also opportunities to sponsor a hole, sponsor a team, or to simply volunteer. There is room for everyone, I promise. So, print off a form from right here on the blog, fill it out and send it in. October 10th will be here sooner than you think! I am so excited for this -- Can you tell?

A million thanks to Larry Larson, Dave Schiele, and Jeff Altergott and the others on the committee that I have yet to meet. You guys are great friends and amazing people.

Other Stuff:

Grant and Bryanna left today for college. After a very emotional week with losing Papa, they had to pack up and head to school. Bryanna had the added bonus of a sinus infection. It made leaving for her pretty hard. Even though we all know that college is the BEST TIME she is still struggling to believe that.

We all went over this morning to say good-bye, and I promised myself I was going to be happy and positive and it worked -- for about 2.2 minutes.

Angie and I have basically shared the responsibilities for our kids. I has always been nice. If I was gone, Angie was in charge and vice versa. I hope she doesn't think that she is off the hook now that her nest is empty.

Grant and Bryanna have always been a permanent feature around here. Grant would always come over to see what the boys were doing and to provide entertainment. Bryanna would pop over to fill me in on the latest gossip and to see if I had anything chocolate.

One of my favorite Bryanna stories is from when she was about 5 years old. Usually on Sunday mornings Johnny would always make big breakfasts. Bryanna would come over to see what was on the menu. Most times she would fill her belly and by the time she was finished Angie would be popping in the deck door to find her.

"She is just having a little breakfast." I would say.

"She already ate breakfast an hour ago," Angie would say.

Bryanna (or Yaya as Quinn named her when he was learning to talk) dimples showing and hair falling in her face, would just smile.

I will miss you, Yaya. Be happy. This is the time you've been waiting for -- your time. (And no, I'm not crying . . . well, ok, just a little)

Grant Alan Cramer, you take care of your little sister. Have fun and be careful. I already miss you, too. Oh, what a night. . .

Good Wednesday

What happened to the ads?

Google, in their infinite wisdom has pulled the ads from the blog. Dang it. What they have in their "policy" (of course I didn't read every single word) is a statement that says I cannot solicit clicking. And I very obviously did. So, since I violated the policy, I am hosed. Seriously, this is disappointing, but I can only be mad at myself for not reading and understanding everything about the ads. I did fill out the appeal form to give my side of the story, so I will wait for their decision. I am not too hopeful that it will go my way, but I'll just have to wait and see. In case the ads do come back, I cannot ask you to click anymore, so you will be on your own for that.

On the home front, Johnny feels basically normal. He has been to work all week and has done fine with that. We are just trying to make the very best of the rest of this week before we start Round 3 on Monday. Good week, bad week. That's how it goes. Hopefully the weather will be beautiful this weekend.

My brother-in-law, Alan, lost his dad yesterday. Fred Cramer was an ornery tease that will be missed terribly. Since Angie and Alan have been our neighbors forever, my kids looked at Fred as their Papa, too. Many family holidays and birthdays have been combined affairs with our families, and until just a couple years ago, my boys didn't realize that Fred and Sue weren't their actual grandparents. (You know how confusing family relationships are for kids to figure out!) He had been doing poorly for quite some time. It really doesn't matter if you know death is coming or if it just happens out of the blue, it is never, never easy.

I am really ready to close the door on Summer 2009. Not the best one ever in my book. How 'bout we look forward to a happy and healthy Fall 2009!

Are you filling out the golf registrations and sending them in? You will not want to miss this, I can guarantee it. Even if you have never golfed before, you should give it a go. I have a couple friends at work, as does Johnny, that will be golfing for the first time ever in this event. I so want Johnny to be surrounded by absolutely everyone that knows and loves him -- so we need you there.

If you don't mind, please continue to pray for Johnny and also add Alan's family to that prayer list as well.

Prayer and More Prayer

Its Monday and both of us managed to make it to work today, so I guess that means it is a good day. In a "back to work" kind of way. Johnny managed to make it for about 5 1/2 hours. Pretty good, I'd say. I worry about him, though, even when I know he is feeling OK. I keep thinking about all the bugs and viruses floating about and I want them to just stay away from him. I don't think he would go for wearing a mask to work. I was also thinking about calling John Travolta and seeing if he still has that plastic bubble laying around. I would feel better about him going out into the world then. A little over the top? Perhaps.

Johnny's Uncle Bill and Aunt Robyn and cousin Lizzie were all here today before they head back up to Boyne and then to Japan and Greece later this summer/fall. If you don't know Johnny's uncle, he has been with the Young Americans since he was a teenager.
Go here for more information. . . they are AMAZING! http://www.youngamericans.org/

Anyhoo -- Bill told us a story tonight about calling Ginger to tell her a story. Seems he got the wrong Ginger. Instead of calling Crazy MIL, he got an old friend that is an assistant now for a Broadway producer (he is someone famous, but I can't remember his name) in New York. After an awkward start to their conversation, Bill realized that it wasn't the Ginger he was trying to call, but at least he did know her. Where it gets really weird is she said that she has had random calls from people saying that they are praying for Johnny. So she told Bill she didn't know why his nephew needed prayer, but evidently a bunch of people on Broadway are praying for him. Bill filled her in (even though she wasn't the right Ginger) and they are continuing to pray. How cool is that! I envision people in all manner of costume praying away for Johnny. Makes me smile.

They have a worldwide presence (The Young Americans) and Robyn assured me that there are prayers going up globally for Johnny. I love that. I wish we could track that like on NORAD radar or something. That would be so cool to see.

Thank you to the Dodge Family. The Alaskan halibut was GREAT! The boys both ate HUGE pieces, and have all but finished off the cookies. . . Jake said they won't even make it till tomorrow! We are anxious for dinner tomorrow. It seems that we are having mystery guest(s) bringing mystery dinner. Intriguing!

We have a couple prayer requests tonight. My brother-in-law, Alan, is with his dad, Fred Cramer, right now as they pray for a peaceful passing. My sister, Angie, and my nephew, Grant, and niece, Bryanna are with them as well. Please pray for the entire Cramer family. Papa will be missed greatly. Hospice has been with them most of the day, and his passing seems imminent. I pray for peace for all of them.

Also, a dear dear friend of the Brawley family, Dave Schultz, had bypass surgery today. The news we received is that he is doing very well after surgery. Please pray for quick healing for Dave and strength and comfort for the entire Schultz family. Dave, Joyce, Julie, and David (and your families) -- we are here and praying for you all. Julie, it was nice to have Mitch with the Brawley family tonight at our cookout/swimming party! Stay strong!

Goodness, I'm pretty bossy with the whole prayer request thing, aren't I? I guess because I know the power of a good prayer and would like to pass along the benefit of our fantastic network to all who need you.

Thank you. Really, thank you.

Magic Elixir

Welcome, Summer!

Holy Cow did it get hot or what? I love the warm weather, but anything over 80 degrees to me is overkill. Johnny can't tolerate much in the extreme temperature department, so we stayed in all day. And napped. Both of us. While our kids ran amuck.

I took a three hour nap today, and yesterday. I only napped for two hours on Friday. I see a trend developing here. I think it is due to the little happy pill that Dr. Al-Fadhl gave me last week. He was very sweet and asked if I needed something to "get me through" this tough time. Since I couldn't even speak without crying, I readily agreed. Well, I cannot keep taking three hour naps and then going to bed at 10 p.m. and sleeping all night. This is way better than insomnia, but I am getting absolutely nothing accomplished! I slept more today than the resident cancer patient. Pitiful.

I went to work for a little bit this weekend to catch up on some unfinished stuff. Yesterday, while at work for about an hour, Johnny paged me. I called him back and he told me I had to come home RIGHT NOW. I literally ran to my car and called him back. He was having trouble going "potty" and was breaking out in a sweat and getting very nauseated. The surgeon had told us at our first visit that surgery didn't have to be imminent because the colon wasn't completely obstructed. In fact, there was plenty of room for the colonoscopy probe to pass through, so we really didn't need to worry about obstruction. Well, of course, that was our first thought when he was not able to go.

On my way home I called the on-call RN for Hematology/Oncology. I told her what was going on and she said that chemo is SUPER constipating. Oh, yeah. They told us that in the lecture titled "1001 Things That May Happen To You During Chemo" on the day before Johnny started Chemo. We had basically forgotten that little tidbit until it actually happened.

She gave me a Magic Elixir recipe guaranteed to clear constipation in 30 minutes or less. No joke. She said, "Make sure he is near a toilet." For real. Within a half hour, my Johnny was double-timing it to the can. Whew. He felt better almost immediately, but the fear lasted the rest of the day for both of us. (Visions of emergency colon surgery have plagued me all weekend!)

So, added to the list of things for Next Time, right after "Shave Chest" will be "Take Stool Softener". See -- we will get the hang of this, you just wait and see.

If you're interested in the Magic Elixir recipe, just give me a call. Good stuff.

GOLF REGISTRATION FORM

I have posted the registration form for the golf outing at the bottom of the blog. SCROLL ALL THE WAY TO THE BOTTOM. You will see the registration form in a window. To print the form, locate the box that says, "MORE" and click on it. A drop down menu appears. Click on the "PRINT" option to print the form. It is just that easy.

Seriously, I feel like a freakin' computer genius right now. I figured out how to put that form on the blog all by myself! It is nice to know that there is another career option just waiting for me out there for when I decide to move on and really start making the big money.

Start filling out the registration form and sending them in! I really want to see EVERYONE there!

TGIF

Thank God It's Friday!

We have made it to the end of another week. Even though this cycle of chemo was much "easier" than the last one, it was still physically exhausting for Johnny and emotionally exhausting for me.

We are still in the learning curve for this chemo biz and keep adding to our list of things for "next time". For instance, the dressing they put over the port for when he comes home with the pump is super-strength sticky. For his first round of chemo, he was freshly shaved from his port placement surgery. This time, his hair had grown back and it was super painful to remove the dressing. We will shave the whole area from now on. Have you ever seen those funny home videos or the "Jackass" show when they use wax to remove hair from a guys back/stomach? Yeah, it was like that. Ooops.

Tomorrow will be one month since his diagnosis. This has been the fastest and slowest month ever, simultaneously.

Many thanks to everyone for their kind thoughts and condolences over the death of my Aunt Theresa. The Lord doesn't give us more than we can handle, right?

I just asked Johnny if there was anything that he wanted me to add. He wants me to thank everyone again for the continued calls and visits. Seriously, we love when friends come over just to chat. A dear friend and cancer survivor stopped over last night and it really meant a lot to Johnny. (Thanks, Don!) So, if you feel like stopping over, just give us a ring and if he's up to it, we would love to see you! I have plenty of wine to share and wood for the fire pit on the deck. We have spent a lot of time on the deck this summer which totally validates my "stimulus check" purchase!

Monster Battles No More

Wanna hear some great news?

Johnny slept through the night last night. No sewer screaming, no dry heaves, no nightmares. Just a good night's sleep while attached to his 5-FU pump. I didn't even say a single "FU" last night because I was sound asleep next to The Fighting Toad. Last time I had to sleep on the floor for the "bad night" because: (1) I feared for my life due to his monster battles, and (2) Johnny was so uncomfortable with the pump attached, I just needed to give him all the room he needed. But not last night!

From now on I will tell every one I know about Emend, wonder drug that it is. I think the magic combination is the Emend, Zofran, Zantac and Lunesta. They take care of the three biggies that Johnny has to deal with -- nausea, heartburn, and inability to sleep.

He is still really sleepy today, and a little on the dizzy side. He has been up to eat his chicken noodle soup and mashed potatoes. It is so hard to get fluids down because they can't be cold. He still has the cold sensitivity thing going on and warm liquids just don't satisfy his thirst like an ice cold glass of water would. Every hour or so I make him drink about 4 ounces, which is manageable.

He also has developed pain in his jaws when he takes the first bite of something after not eating for a while. Pretty weird. There is a syndrome called "First Bite Syndrome", but it is usually found in people that have experienced surgery in the salivary gland region of the neck. I think it is in relationship to the drug that causes the cold sensitivity. Who knows. It only happens on the first bite and then goes away for the rest of the meal, so it isn't too bad for him. Just really weird.

He will probably just sleep the majority of today and tomorrow he will start to move around a bit. I think by the weekend he will have this round of chemo licked. We feel much more powerful this time than after the last round. Knowing we have a good combination for keeping the nausea under control is incredibly comforting. So, BRING IT! We can take it.

Thank from the heart of our bottoms! (My new favorite saying.)

I Love Emend

Quiet night at the Brawley's. Johnny is sleepy, but we expected that. An unexpected surprise is the lack of nausea and all that goes along with it. I mentioned yesterday that he was given Emend, and boy is that stuff worth it's weight in gold. Good stuff. We like the mixture of Emend in the morning, Zofran at night, a little Compazine and Ativan for the in-between hours and Zantac and Lunesta thrown in for good measure.

He can't stay awake for long, but it is hard work making new cells as the chemo tries to kill them. No sense in fighting it, I say sleep!

He has eaten pretty well today: mashed potatoes and chicken noodle soup (YUM!). It worked for him last time, and it is what sounds good to him again.

While I worked today (still waiting for that winning lottery ticket) MIL came over to watch her baby. While she was here, she just tidied up a bit -- you know like my kitchen cupboards and all the laundry. Really, if you don't have one, I really recommend getting yourself a mother-in-law like mine! You can't have her, though, she has enough to do with her four boys (and their wives!)

The boys are staying the night with friends (thanks, Rich and Becky!). I appreciate that they don't have to be around on Johnny's tough days. This is hard enough, I want them to be able to enjoy their summer before heading back to school.

Thanks to everyone for the continued food, well wishes and calls. You really can't imagine how much this all means to us. We feel surrounded by love and never alone. That is an amazing feeling. Thanks, Diane and Joe, for stopping by. I LOVE the bracelet! It is so beautiful and a great symbol of HOPE!

Arrangements for Aunt Theresa:
Friends may call from 6 to 8 p.m. Wednesday at Hope United Methodist Church, 69941 Elkhart Road, Edwardsburg, where the funeral service will be at 11 a.m. Thursday.

Please continue to pray for my mom and the whole family, especially Uncle Jeff, and my cousins Jeff, Jr. and Elsa and their families. Theresa will be missed greatly; a lot of people really loved that crazy little woman!

Round 2

Johnny is resting right now after launching attack #2 on the evilness that is cancer. His infusion today went off without any problems. His labs were all marvelous, so that made me happy. It is a worry when you get chemo that your white blood cells (the infection fighters), red blood cells (the workhorse of the blood) and platelets (the clotters) will decrease and cause problems. No worries for that this time, thank the Good Lord.

We saw Dr. Ansari before his treatment and finally got the results from the specimens that were sent to Arizona. What we found out is that one chemo agent (that hadn't yet been started) is ineffective for Johnny's specific genetic make up and tissue sample. Another drug, however, will work and is an option for treatment later on.

We asked about chemo cycles and possible surgery dates. From the information that Dr. Ansari got back from Arizona, he thinks that the chemo is going to shrink the tumor in the liver and colon dramatically. If that is the case, we will delay surgery for another 6 cycles of chemo. If the tumors don't respond like he thinks, we will go ahead with the original plan of 6 cycles (2 done, 4 to go), re-scan, and then plan for surgery. I like the first option of 6 additional cycles, because that means the chemo is kickin' booty and the tumors will shrink to a size that is much easier to deal with surgically.

Johnny was given an additional medication today to deal with the nausea. It is called Emend. Before Dr. Ansari prescribed it he asked about our insurance. He said, "It is almost $400 for three pills. If your insurance will cover it, fine. If your insurance will not cover it, let him throw up." Johnny said, "Then someone can pay me $100 every time I throw up." Thankfully we only had to pay $40 for those three beautiful little pills. So far, so good.


I'm gearing up emotionally and mentally for the next couple days. I think we are better equipped to handle what the next couple days have in store, but the unknown looms out there. The "unknowns"hang out with the "what ifs" and wreak havoc on my mental status.


Speaking of my mental status. . .


Yesterday I lost someone so incredibly dear to me. My Aunt Theresa. So many of you have met her, and if you never did then I am so sorry for you. She was the shining light of the Fowler family. No matter what became of the Fowler family over the last several years, I think we can all look back to the old days of family Christmases and gatherings and come to the same conclusion: There wouldn't have been near the laughter and joy without the tiniest member of our family. For those of you who didn't know her, Theresa was an achondroplastic dwarf, a Little Person. Everything about her was fun. She was the "fun" aunt. The one that wasn't afraid to have all of us kids over for a sleepover, even though she had the least amount of room -- she had the most amount of heart. Her love for her family (and I mean the entire family) was immeasurable and unconditional. She and Uncle Jeff didn't have much, but they would give you the world and anything in it if it was within their reach.


They used to live on Dragoon Trail in Mishawaka and one of my favorite memories is when I was a very little girl, maybe 6 or 7 years old, I was staying the night with her. They lived next to a cow pasture that was surrounded by Queen Anne's Lace and we would pick it and feed it to the cows (or at least try). I pulled a big stem out of the ground and smelled the root end. To me, it smelled like carrots so I told her. She told me to look at how pretty the flowering end was. "It looks like a snowflake."

Have you ever looked at Queen Anne's Lace? You should.

It always fascinated me that she could drive a car. She was less than 4 feet tall, and yet she had special pedals on the car so that she could sit on a pillow and drive. The gas and brake pedals were just below the steering wheel. I loved that she had the ability to do that.


She was relentlessly teased by my dad and my Uncle Gene. Inevitably, she was the one to get thrown in the swimming pool, screaming the whole time. To us kids, it was a banner day when we finally had grown taller than Aunt Theresa. (This usually happened sometime around 2nd or 3rd grade.) She never complained about being a Little Person that I ever heard. She would even play the role of Santa's elf at Christmastime. I have countless memories of her, and will cherish every single one of them for the rest of my life. She was the best thing that came in a small package.


Goodbye, Aunt Theresa. I love you so much and will forever miss you. I can't believe I'll never see you again.


(Sherilyn, I could use a happy thought at any time. Love and miss you, too.)

Aunt Theresa

Rest in God's Peace, Aunt Theresa. You're absolutely perfect now and for eternity. I love you.

My sweet little Aunt lost her fight today.

Please pray for her husband, Jeff, and the rest of our family.

EMERGENCY PRAYERS FOR MY AUNT THERESA

Emergency prayers needed, please.

My Aunt Theresa (my little aunt) is in emergency surgery right now. She has been struggling for quite some time with an ulcer, among other things. It has gotten substantially worse in the past couple days and she is now in surgery trying to get the bleeding stopped. My dad just called from the hospital and it is not looking good.

She coded this morning due to lack of blood volume and is also on a ventilator. They are pumping the blood in as fast as they can, but it isn't doing much at this point. Her only option is getting to surgery and getting the bleeding stopped. She is in such critical condition that they aren't sure she will make it through surgery.

Please direct your prayers to Elkhart for my Aunt Theresa.

Enjoy the weekend!

Enjoying the weekend. (As much as you can on call, anyway.)

Hope you all are, too.

I posted information on The Fighting Toad Golf Outing. We can't wait to see you there!

Also, posted information for Lori Brawley, our Meal Coordinator. I can't wait to pay this one back/forward! This has been the most stress relieving thing thus far -- both the meals and having it coordinated for us.

Please pray for Monday's chemo session. Also, pray for better nausea management for next week.

We love you all from the heart of our bottoms . . .