Chemo Brain

One of the most annoying thing about chemotherapy for us to deal with is what we lovingly refer to as "Chemo Brain." It is the foggy state that Johnny resides in from the time chemo starts until the end of chemo week. Actually, it lasts a little longer than that, but I don't want to make Johnny feel bad.

How can I describe chemo brain . . . .

Some of you may have talked to Johnny on the phone during this time, only to have him suddenly change subjects or abruptly say good-bye and hang up. Chemo brain.

You may have called or stopped by and talked at great length with him about very important matters, such as someone shooting a giant buck and the next day he can't remember who shot the big buck. Chemo brain.

Maybe you are married to him and you keep reminding and reminding him to NOT LEAVE THE HOUSE without calling you at work to let you know what is going on. Then, when he is reminded that he has DONE IT AGAIN!!! he is surprised with the severity of your anger. Chemo brain.

Oh, so many examples.

Here is an actual conversation that just took place yesterday:

Johnny: (After watching Diners, Drive-Ins, and Dives) That Guy Harvey gets to eat at some amazing places.

Me: Honey, it is Guy Fieri.

Johnny: Oh, yeah. Guy Harvey is the dude that says, "And now you know the rest of the story."

Me: Ummm. No, babe, that is Paul Harvey.

Johnny: I must be thinking of the baseball player. . .

Me: Seriously? That's Steve Garvey.

Johnny: Then who the heck is Guy Harvey?


Chemo Brain. Actually, Guy Harvey is a real person. He is an artist that paints mostly fishing murals and he has a line of shirts that Johnny likes in the Florida Keys. He also has a wonderful restaurant in Key West. So, he wasn't entirely off base with having the name in his brain.

Hunting season (gun) is over tomorrow, and it hasn't been very productive for this Brawley household. We still have the rest of archery season and shortly muzzle loader season.

Hope everyone had a great Thanksgiving! Lots and lots to be thankful for!!

Number Ten

Just when we are getting this chemo business down pat, we are running out of sessions. Don't get me wrong, I am happy to be close to the end of this business, but there are a bunch of really cool people we have crossed paths with on this journey. (MISSED YOU TODAY, MAY!!!)

Number one concern for this cycle was Johnny's blood pressure. Dr. Ansari doubled his blood pressure medicine, so hopefully we will see this improve quickly. I'm taking his BP daily now, and am getting anxious to see results. Today's pressure in the office was approximately 170/126. Yuck. He slept most of the time at chemo, and he attributes it to his blood pressure. When the heart is working that hard to pump, it stands to reason that you'll tire easily.

Second concern for this visit with Dr. Ansari was Johnny's weight gain. Since July 8th he has gained a total of 16 pounds. Dr. Ansari was relentless in his teasing today and even told the new nurse practitioner, Brandi, to stay away from Johnny or he might eat her! Most people have such a hard time with chemo that weight gain usually isn't even a consideration. We all know that Johnny isn't "most people". To quote Dr. Ansari, "You are thriving on chemo."

His feet and hands really bother him the most of anything. His hands are so sensitive and are peeling layers and layers of skin daily. The pads of his fingertips are like baby skin -- so soft! The skin peels so quickly that there really isn't even a fingerprint on the tips of his index fingers. The neuropathy is moving to his feet as well. They feel "swollen" even though they aren't and have started to turn the dark color that his hands are. He says that there is a lot of burning, too. I gave him a long foot rub tonight when I tucked him in and used warm foot lotion (one of my favorites!) from Lush. He said they felt better after that which really made me happy. It is so hard to find something that I can do to help him feel better. Even something little like a foot rub makes me feel like I have helped out a little.

Dr. Ansari also said today that we will be going to Indianapolis for surgery. IU Med Center has a surgical oncology program that is currently ranked second in the country. It is second to Johns Hopkins in Baltimore (one of the early considerations for surgery). The doctors responsible for heading this program had their training at Johns Hopkins and Memorial Sloan-Kettering in New York. It is quickly becoming the "go to" spot for this region of the country. We are completely confident with this and are looking forward to completing some more details in the upcoming weeks. With the next step in the plan on the horizon it is really easy to get excited about being in COMPLETE REMISSION very soon.

Additional good news today came from Johnny's CEA level. At last report is was 3.7, and today it was 3.6. It continues to show its demise, and I love it.

Please continue to pray for Johnny and our family. I really want his blood pressure to come down this week, so that is my frontline prayer.

And remember in this season of Thanksgiving to count your blessings each and every day. Life is good, people. Life is good. And love. Love is really good.

Apologies!

I promised if Johnny shot anything, I would update the blog. As you have probably noticed, there have been no updates since November 13th. The reason for this is simple: no deer.

In addition to Johnny being gone MOST of the time since his last chemo session, I have been very busy at work with our new hospital just about ready to open. Believe me when I say, there is a lot that goes into training when you open a brand new, state-of-the-art hospital!

So, I apologize profusely to those of you whom I've disappointed with my lack of blogging. Tomorrow is chemo and as always, I will update to let you all know how Johnny is doing this week.

I'm on my own this time (no Crazy MIL - the family is in the U.P. for Thanksgiving) so I will be off on Monday and Tuesday to take care of Johnny. We are super sad that we can't go to Thanksgiving in the U.P. this year, but the chemo schedule just got in the way. There is always next year . . .

Looking forward to completing #10 tomorrow. Double digits and only TWO more after tomorrow is done. Last cycle is schedule for December 21st -- Just in time for Christmas!

Opening Day is Upon Us

Oh, yeah, Hunting Season. I almost forgot about you. Well, come on . . . Johnny's been waiting for you.

With everything that has been going on in our lives since summer (yeah, we have been a little preoccupied) hunting season's approach went almost unnoticed by me. But, here it is just 36 hours or so before Opening Day. Don't you think this should be an official State Holiday? I know I do. Johnny has been in near panic mode this week to get prepared for Sunday.

Monday's chemo went pretty well, so he was confident that this weekend would not be a problem to get out to the woods and do what he does best (well . . . ). But then came Tuesday. It was a rough one. Remember the post where I discussed the Magic Elixir? It came down to that on Tuesday. Poor Johnny. He was in a cold sweat and just about as miserable as I have seen him throughout this whole mess. After the Magic Elixir kicked in, he felt better but questioned if he was going to feel fine by this weekend.

The very next day he was out in the woods with his cousin tracking a deer. So, evidently all is well. Yesterday and today both he was out putting up treestands and getting some prime hunting locations ready for the Big Day. Of course, he had a lot of help doing all of this manual labor, but he felt good getting out there and getting it all done. I am happy that he was up to it.

When Opening Day dawns bright and early, Johnny will be where he has been every November 15th since he can remember - in the woods. I will be at home (where I always stay on November 15th, for safety reasons) and will field the 1 million phone calls that will come in. The conversations go something like this:

Caller: Toad there?
Me: No, he's not in yet.
Caller: Anybody get anything?
Me: I'm not sure. I'll have Johnny call you when he gets in or calls.
Caller: I'm headed to Pooh's, have him stop by.
Me: He will be there.

I will have this conversation over and over and over until the end of muzzle loader season. No kidding.

All kidding aside, I couldn't be happier that Johnny will be able to hunt this year. It is a big relief to him, too. Last week when he shot a 6-point with his bow, he was overcome with emotion and I know Sunday will be no different for him. He will be with his dad, brothers and multiple friends over the course of the weekend, and nothing makes him happier!

I know my prayers have included a little, "Hey, how 'bout a nice big 12-point crossing Johnny's path on Sunday." That would just be the icing on the cake.

I promise I will post something if Toad gets the big buck this weekend. As with every single Opening Day, there will be stories to tell. If any of them are "PG" rated, I'll pass them along.

On the prayer request front: Johnny's blood pressure is remaining high. It is chemo-induced, but bothersome nonetheless. We have been tracking it lately, and will contact his primary care physician on Monday for some help in getting it lowered. It should be a short-term thing since he only has three cycles to go but I worry, you know?

May: Hope you are basking in the glow of chemo completion. We will miss you on chemo Mondays!

Heidi: Still looking for you on Facebook!!! Call if you need help - I can walk you through it!! Miss you.

Number Nine

Nine and counting. . .

It feels better and better each time we leave the infusion center after a treatment. Johnny did well today during his chemo, with very minimal nausea. On the way home we even stopped by to check out a good deal on a "new" Suburban (New is a relative term -- it is a 2000! Still newer than what Johnny currently drives!) and then attended Jake's parent-teacher conference.

OK, can I sidetrack for a moment here on the parent-teacher conferences?

Anyone that knows me, knows that I am near dictatorial when it comes to school. We have the "Zero Electronics" policy Monday through Thursday. . . that's right: nothing with a screen, charger, battery or plug during the school week. I firmly believe that books are a great substitute to Xbox and addictinggames.com. I think our family definitely communicates more and plays more family games as a result (especially during the winter months).

But, when the school year started I was deep in the quagmire of Johnny's chemo schedule and really hadn't focused on the kids academics. Again, no Mother of the Year award headed my direction. When I realized about a week ago that the end of the first marking period was upon us, I discovered that I had no idea where the kids were with things. I hate that feeling.

Both of the boys did very well, with no thanks to me. Jake had straight A's and Quinn had all A's and two B's. Seriously, this was completely on their own, as the Dictator had other things going on in her head.

I thanked both of the boys tonight for staying on top of things with school in the absence of basically both of their parents since school has started. I am so proud of them. I also explained that since we know things with Johnny are going so well, I will be able to step it up as the Great Dictator for the remainder of the school year. Surprisingly, this wasn't met with the response that I thought it deserved!

Back to Johnny -- Johnny has a couple areas of "hyperpigmentation", one on his hand and the other on his head due to the chemo. Nothing serious at all, but is has been noted nonetheless. His blood pressure continues to run high while we are in the office, but at the end of his chemo session, it comes down nicely. I need to check it over the course of the next week to make sure that it comes down and stays down. High BP is also a side affect of the chemo.

We talked about the need for chemo after surgery and Dr. Ansari thinks that if the margins are "clean" then he won't need any more chemotherapy. This part rests in the skilled hands of the surgeon (who has yet to be named).

Johnny is now asleep, and I am heading to bed soon. I go to bed happy tonight knowing that chemo #9 is over for Johnny (ONLY THREE TO GO!) and my boys are actually capable of getting good grades without me constantly on their backs. This is the stuff of which good dreams are made.

Prayers, as always, are deeply appreciated.

What Cancer Can't Do

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
It cannot lesson the power of the resurrection.

(Poem borrowed from a poster in the infusion center at Hematology/Oncology. Sorry, I don't know the author.)

Vince, may you rest comfortably in the arms of the angels. Your smile and beautiful blue eyes will be remembered by everyone who ever had the pleasure of meeting you.

Coincidences and Blessings

Ever since this whole thing with Johnny started, I've wondered "Why?". Ok, not in that "Oh, poor me . . . poor Johnny . . . poor us" kind of way, but just an overall curiosity. Was there something that could have been done to prevent it from happening or is it just what it is? I believe in a certain element of Karma, but not as a means of retribution per se.

I have done enough examination of our circumstances to see some very obvious coincidences.

Coincidence #1:

New Year's Resolutions are fun for me. I make them and by the first of March they are usually completely forgotten, just like everyone else. I tend to not make the whole "Get in shape and lose weight" resolution, because that is just too depressing. I like to go for the more obscure stuff. For example, about three years ago my resolution was to write and send 50 snail mail letters that weren't birthday cards. I had to choose random people, you know not just my family and Johnny's family. Random. Mission NOT accomplished for 2006. However, I have had the opportunity to write to well over 100 people so far this year in an expression of deep gratitude for what has been provided to our family since Johnny's diagnosis. Meals, gifts, bottles of wine, meaningful visits -- all from a varitable random assortment of the people in our lives. Maybe I can count this as delayed resolution fulfillment.

Coincidence #2:

Since the boys were fresh from the womb, Johnny has been the primary parent. I mean that in a really good way. Most kids spend all of their time with mom and not nearly enough with their dad. People know that my job has always been the more time consuming and the one with the more rigid schedule. I punch a timeclock, Johnny never has. He has always been the one to get the boys up in the morning, get them breakfast and ready for the day. Whether it was off to daycare when they were little, or now as big kids getting off to school, Johnny was the one that handled it and did it well. To be perfectly honest, I always felt that I was missing out on that part of my kids "growing up." But since Johnny handled it so well, I also felt the blessing that I could count on him for anything that had to do with raising the boys. On the occasion that I would take over morning duties, I sensed that it wasn't the natural flow for the boys -- almost like I was disrupting the way things worked.

When we knew that Johnny's cancer treatments were going to cause issues with getting the boys up and off to school in the morning, I talked with my boss at work about the possibility of coming in to work at a constant time, and much later than I normally did. Fortunately, it was possible and I have become the primary parent for the very first time.

It has been an opportunity for me that I didn't realize I had been missing out on. I get the boys up for school every day and make sure they have a nice breakfast (This morning: Hot biscuits fresh from the oven and sausage gravy -- YUMMO!). We also use the time on the ride to school to talk and have had some meaningful conversations. I can tell you that Johnny usually takes the 10 extra minutes of sleep route, rather than fixing the scrumptious breakfasts, but hey - I'm not trying to tell him how to do the job!

I don't know if the kids realize how much this has meant to me, but it doesn't matter. The rewards I have received from the bonus time with the boys has been serendipitous.

Coincidence #3:

Until July 8, 2009, no one in this house took prescription medication. I think it was in February or March when a friend at work was looking over some receipts to submit for the before tax funds that come out to pay for medical expenses (What is that called?). She asked me if I had any money taken out for medical expenses and I said, "We don't have anything. None of us take any medications at all." Woo Hoo. You should see the drug stockpile we've got going on now. Johnny has a total of 8 medications that he takes, and I have 3. Seriously, I'm saving all of the pill bottles and will do something very creative with them when this is all over!

Coincidence #4:

Let me get really honest here for a minute. I have been very well taken care of since June 19, 1984. That was the first day that I kissed Johnny Brawley in Quetico National Park, Ontario, Canada. We were on a backpacking and canoe trip (I know you have heard this story before!) and that is when we got together. A few days into the trip I ended up with Strep throat and was very sick. I was laying on a sun-warmed rock to try and absorb the heat while everyone else was eating. Johnny brought me some spaghetti and Kool-aid and told me that I needed to eat and drink something. Yeah, three days in to the relationship and he is already my prince charming. I have been well cared for every day since then. (With very few exceptions.) I have never really had the opportunity/necessity to care for him like he cares for me. He requires so little.

Until now.

I have really taken this newly-acquired job seriously. He deserves it and I really want to do a good job for him. I have a complete ritual that I perform on the Sundays before chemotherapy, just so that he is comfortable for the next three or four days that he will be spending in the bedroom/bathroom. Clean sheets, clean blankets, clean pillows, clean (SANITIZED!) bathroom, clean favorite pajamas, pills all counted out for the upcoming week, remote control placed in close proximity on his bedside table. Whatever I can do to make the chemo week tolerable, I will do. He would do all this and more for me, and I know it.

There is nothing about Johnny's cancer that makes me happy. I hate that he has gone through even one single minute of nausea and discomfort because of all this. What I have discovered is that there are blessings to be found in all circumstances. I have had the blessing of reconnecting with literally hundreds of friends and family over the course of the last 4 months. I have had the blessing of discovering the mom that I knew I could be. I have had the blessing of discovering my ability to handle situations that I had no idea I could handle. And I have had the blessing of showing the man that I love that I meant every word of "in sickness and in health."

And I thank God every single night for all of my blessings.