Please don't forget about us!!!
I know I have been absolutely terrible about updating Johnny's blog lately . . . but you know, right now BUSY is an understatement.
Let's recap: It is Christmastime. That in itself makes all of us Crazy Busy! Then we have all the various school parties, programs, concerts, etc. Anyone with kids knows how this just zaps your time! (Side Note: Why do I ALWAYS wait until the last moment to iron the outfits the kids need for the appropriate performance? Every. Single. Time.) Then on top of all the Holiday Preparations it just so happens that the hospital I have worked in for 18 years decided to pack up and move. No small undertaking. Add to that being on call, and it just about takes every last second of my time.
The good news is: The Christmas cards are in the mail (except the ones with address changes :O] ) and the Christmas presents have been purchased with only a couple exceptions. Nothing is wrapped, though. That is for this weekend. The hospital has successfully moved across town to Mishawaka. If you haven't seen it, it is worth the trip over there. GORGEOUS! And tonight was the last program of the season (Quinn's band concert). Only a couple things left to do, and I will officially be ready for Christmas.
Which brings me to Johnny . . . the whole reason we meet here on a relatively regular basis, right?
He is just so ready for this all to be finished . . . he is physically exhausted. His body is starting to harbor true hatred for all the chemical toxins that have been pumped into it. The bottoms of his feet have completely peeled off numerous times, as have the skin on his hands. He complains of pain (a neurological effect that should go away with time) in his hands and feet on a daily basis. The cold intolerance persists. Nose bleeds are a new and annoying visitor. We know that things could be so much worse for Johnny, and we are thankful that his truly bad days have been kept to a minimum. Just one more to get through. Thank you, God.
My prayers persist and I hope you are still with us through all of this. Please forgive me for the infrequent updates over the last couple weeks. I promise, when we are settled in our new department and Christmas is over, the updates will become more regular and consistent. We appreciate knowing you are out there praying for us on a daily basis. Keep it up, will you?
Wednesday, December 16, 2009
Monday, December 7, 2009
Number Eleven
When Johnny had his very first chemotherapy cycle I thought there was no way we were going to make it all the way through twelve. Do you remember the monster battles and sewer screaming? Me, too.
We have made it through Number Eleven, and even though the pump is still attached we can see the light at the end of the tunnel. Man, does that feel good.
Today in our meeting with Dr. Ansari we talked about Johnny's blood pressure a little more. It is being stubborn and doesn't want to come down and stay down. It has come down for a day or two, but then heads back up to the 160/100 range. Not acceptable at all. We have doubled his dosage for the second time and hope that with the last session on the horizon, it is all we will have to do. Dr. Ansari has assured us that after chemo is over, this problem will resolve with time.
Johnny's feet have become the biggest source of frustration. They are completely numb on the bottom and burn when they get cold (which happens if he even walks on the hardwood floors!). They have also started to peel and darken, just like his hands have been doing. Again, we are assured this will go away, if not completely then mostly. He was started on Neurontin to help with the pain associated with all of this.
A couple times over the last two weeks he has sprung a nosebleed. Nothing that scared either one of us, but worth mentioning to the doctor, nonetheless. He wasn't too concerned.
His lab values have remained strong. His liver function labs have been elevated, but that is expected what with cancer in the liver and all the nasty chemicals we have been sending that way to invade the tumors. Today his platelet count was the lowest it has been at 101, but again not too concerning. Nobody even blinked today when they got the results. The really, really good news with is labs is that his CEA level has gone down yet again! Today it was 3.4! That is nearly unbelievable. Johnny's nurse today said, "I just can't imagine that it can go any lower, but you have proven me wrong before!"
We finally have the name of the surgeon, too. Her name is Mary Maluccio. Johnny was thrilled that the surgeon is a woman. His theory is that women still have to try so much harder to become a surgeon in a male dominated field, so she must be EXCELLENT! We will get to meet her after the first of the year and make that determination on our own.
If you don't mind me asking again, I'd love it if you would all continue with the prayers. I know you are busy with Christmas shopping, baking, decorating and all that but just throw up a "Hey, You!" on our behalf every now and then. Thanks.
We have made it through Number Eleven, and even though the pump is still attached we can see the light at the end of the tunnel. Man, does that feel good.
Today in our meeting with Dr. Ansari we talked about Johnny's blood pressure a little more. It is being stubborn and doesn't want to come down and stay down. It has come down for a day or two, but then heads back up to the 160/100 range. Not acceptable at all. We have doubled his dosage for the second time and hope that with the last session on the horizon, it is all we will have to do. Dr. Ansari has assured us that after chemo is over, this problem will resolve with time.
Johnny's feet have become the biggest source of frustration. They are completely numb on the bottom and burn when they get cold (which happens if he even walks on the hardwood floors!). They have also started to peel and darken, just like his hands have been doing. Again, we are assured this will go away, if not completely then mostly. He was started on Neurontin to help with the pain associated with all of this.
A couple times over the last two weeks he has sprung a nosebleed. Nothing that scared either one of us, but worth mentioning to the doctor, nonetheless. He wasn't too concerned.
His lab values have remained strong. His liver function labs have been elevated, but that is expected what with cancer in the liver and all the nasty chemicals we have been sending that way to invade the tumors. Today his platelet count was the lowest it has been at 101, but again not too concerning. Nobody even blinked today when they got the results. The really, really good news with is labs is that his CEA level has gone down yet again! Today it was 3.4! That is nearly unbelievable. Johnny's nurse today said, "I just can't imagine that it can go any lower, but you have proven me wrong before!"
We finally have the name of the surgeon, too. Her name is Mary Maluccio. Johnny was thrilled that the surgeon is a woman. His theory is that women still have to try so much harder to become a surgeon in a male dominated field, so she must be EXCELLENT! We will get to meet her after the first of the year and make that determination on our own.
If you don't mind me asking again, I'd love it if you would all continue with the prayers. I know you are busy with Christmas shopping, baking, decorating and all that but just throw up a "Hey, You!" on our behalf every now and then. Thanks.
Wednesday, December 2, 2009
Mr. Jett
Be not forgetful to entertain strangers;
for thereby some have entertained angels unawares.
Hebrews 13:2
Mr. Jett is my angel. I don't even know his first name, or where he lives but I believe he is a genuine angel.
Have you ever driven past someone holding up a sign that says "Will Work For Food." It seems lately there are a lot more than ever before. I often wonder what the story is behind the person holding the sign. Family man with hungry kids at home, down on his luck because he has lost a job that he held for 15 years? Single mom that just can't make ends meet since her husband walked out leaving her alone with three kids? Oh, I can make up some really great stories in my head about these folks. Sometimes, I am ashamed to say, I think that maybe they are just lazy and not interested in finding a real job. When I think it through, though, it can't be easy to stand out on a corner for hours in the hopes of finding a couple people that may stop and help out with some cash or groceries.
On Redfield Road where Gumwood does the little jog, there is a white haired gentleman that holds his sign: Will Work For Food. God Bless You.
He usually doesn't show up until the end of the month. In my imagination it is because he has made his meager Social Security hold out as long as possible, and by the 25th or so of each month there is just nothing left. I've never bothered to ask him what the story is because it wouldn't change why I stop.
I had seen him at that location a couple times before and had never stopped. For some reason, I couldn't get him out of my head. I fantasized in my head that he was an angel and was watching to see how the world treated him. Maybe he was reporting back to the Big Guy himself. I decided if I ever saw him again, I would stop.
Several months passed and I kept wondering if he would no longer come to "his" spot. And then on a cold day, I made the left turn off Gumwood on to Redfield and there he was. He was standing there holding his sign and wearing an old winter coat and yard gloves. I'm not sure why, but my heart actually pounded in my chest.
I drove past him, making the right turn back on to Gumwood. What should I do? Instantly I thought that I should go buy him some groceries. I turned around and went to the Pay and Pack It on 933 (This was before the Martin's at Heritage Square was open) and bought $20 worth of groceries.
I took the groceries back to him and handed the bags out the window. He said, "God Bless You!" and I thought, "A-HA! You are here on a mission from God!" It was settled. He was my Angel on Redfield Road, and I vowed that I would ALWAYS take the time to stop what I was doing when I saw him and provide him with something. No matter what, if I see him standing there I automatically stop what I had set out to do and change my path to provide for him.
Believe me, there have been several times that I wanted to pretend like he wasn't there or to take another route entirely thinking that he probably WOULD be there and I just didn't have the time to stop. Not allowed.
I have had the kids with me on a number of occasions, as well. It has been a great lesson for them, as well as for myself. We have had great conversations about how people end up in that situation, how we can help, how we wish other people would not judge and just help out, too. We have also talked about how blessed we have been and that we should show our appreciation to God by helping out some of his less fortunate souls here on Earth. They know that I consider him "My Angel" and have adopted him as their own as well.
Once when I stopped, I decided I would ask his name. I rolled down my window to hand him the groceries, and said, "Hi, my name is Pam and I just wanted to bring you a few groceries. I thought maybe you could use them." He said, "Oh, I remember you. You have stopped before. My name is Jett, just like the airplane. Jay-Ee-Tee-Tee, Jett. I remember your car."
I was so happy that he actually recognized my car and knew that I had stopped before. I felt that maybe I scored some extra points upstairs since he recognized me -- silly, I know. He went on to tell me that he was alone now, his wife had been in a nursing home for a couple years and he just couldn't make it to the end of the month without a little help anymore.
That's all I know about him. I have no idea if he is crazy or pulling a fast one, and to tell you the truth: I don't care. My God and Father knows what is in my heart and that is all that matters.
Since Christmastime is fast approaching, it is a good time to reflect on how fortunate we are and to possibly help those around us. Everyone has a story, and everyone is dealing with something. Until you have walked two moons in someone else's moccasins, it isn't fair to judge them. Every unfortunate person you encounter may not be an angel you are entertaining, but hey -- You never know!
Sunday, November 29, 2009
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!!
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!!
Monday, November 23, 2009
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.
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.
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