Shhhhh, listen. Do you hear that? No? It is called silence. As in no one else in the house but me. Ahhhhhhhhh.
The boys are both at some friend's house playing for the day (thank you, Farinella's!). Johnny is at an Artwork Committee Meeting (more on that later). And I am in the house. Completely alone.
This hasn't happened for weeks now. It used to happen all the time, you know -- Before Cancer. Johnny was never in the house for long. I think we are figuring out how this is all going to work and getting a hold of a new kind of normal. One week won't be so great, but the next week we get to do what we normally would. So that's not too bad, considering.
I am enjoying the fact that the house is picked up (relatively speaking) and the dinner dishes are done and put away. Kitchen is picked up. I am about to open a bottle of wine and take a long soak in the tub. Nearly perfect.
"What's up with the Artwork Committee Meeting?" you may be asking. I don't want to spoil the final product, but I'll give you a little information. As some of you may know, Johnny designed the tattoo on his back and had a friend/tattoo artist make it permanent. The tattoo is of a toad in a little row boat fishing for a sailfish with a beautiful sunset in the background. The sunset is from a picture that we took on one of our trips to the Florida Keys. The toad in the row boat is obviously Toad in a row boat. The sailfish is from a trip that Johnny took with his Grandpa (Roy) when he was sixteen in Baja, California. In the woodgrain of the little row boat are initials: GF, IF, GC, EH, JS -- the initials of people that Johnny has loved dearly and lost. This is a very special tattoo, with so much more meaning in it than most people put into their body art.
When Johnny found out he had cancer he wanted to get another tattoo (he has wanted another one for a long time, but couldn't come up with something meaningful enough to permanently emblazen on his body). So he decided that when his fight was finished, he would memorialize it with a tattoo.
Then he started getting poked with needles. A lot of needles. Made him think twice about more needles for a tattoo. So now instead of thinking of another tattoo idea, he decided on a "logo" more or less for his battle. Something that would go along with The Fighting Toad. He has some ideas and wanted two of his good friends, Erik and Joe, to work collaboratively to come up with the artwork. It was really important to him that the guys work together (they haven't met until today.) For Johnny, the meaning of the end product is everything. He would never ask someone he doesn't know to work on this for him; it has to be done by people that mean the world to him, as both of these guys do.
I won't give away the idea. When it is finished we will show it to everyone via The Fighting Toad blog. I'm really excited to see it finished. Instead of having it permanently in ink on his body, we will probably just put it on a t-shirt for him to parade around. I know he doesn't like the idea of any more needles, and I don't like the idea of potentially harming his liver when this ordeal is done. So, t-shirts it shall be.
Thanks to everyone for continuing to feed my family. We have been eating very well and I know that without all of you guys my boys would be up to their eyeballs in frozen pizzas by now. (Hey, don't knock a good Tombstone Cheese Pizza -- they are the best!) As I told you before, Lori Brawley is acting as our Meal Coordinator and is doing a fantastic job. (Thanks a million times over, Lori!) If you were thinking about a meal/snack/dinner/whatever, please contact Lori at home 269-684-7021 or at clbrawley@comcast.net and she will help us all out.
Again, Save The Date: October 10th. The Fighting Toad Golf Outing at Hampshire Country Club. I will post contact information tomorrow. The first 72 teams that complete registration are in! So, don't miss out. I can guarantee you a fantastic time -- I'm pretty sure there will be Jell-O shots involved at some point! Woot! I can think of 72 teams without even trying, and I'll be disappointed if I don't see everyone there. This will be a great celebration before Johnny heads off for his liver/colon surgery. We are looking forward to it like CRAZY!
Thursday, July 30, 2009
Wednesday, July 29, 2009
Gall Stones and Golf
Johnny had a visit with our primary care physician, Dr. Al-Fadhl, today. Other than just checking in with him there was no real reason for the visit. We just want to keep him in the loop for when this whole cancer thing is over.
He is a wonderful man. I totally credit him with finding this cancer much earlier than we would have with anyone else. He told us today that either something Johnny said at his initial visit or the way he said it just made him think that he needed a colonoscopy rather than less aggressive testing. He couldn't remember exactly what it was, but something told him to do it. (I think it was Someone.) I even sent him a thank you note after the diagnosis, thanking him for not blowing Johnny off with a "wait and see" attitude. I didn't actually use those words, but you get the idea. Today, he thanked us for the thank you note. Yeah, that's the kind of guy he is. He also told Johnny that he admired his attitude and concern for other's to get checked out.
As he was reviewing Johnny's results on the computer screen (Side Note: You can raise my taxes for the implementation of Electronic Medical Records any time you want!) He smiled and said, "Do you know you have gall stones?" It made all three of us laugh. How crazy is that? The findings were noted on the PET scan, but I don't think it was of a whole lot of importance to Dr. Ansari so he didn't mention it.
We are assuming that during the surgery for the liver and colon they will just remove the gall bladder, too. Might as well. Johnny said that he wants his appendix, tonsils, and wisdom teeth removed at the same time. "If I don't need them, I want 'em out!"
A few dear friends of our are planning a golf outing for Johnny. I don't have all the details yet, but when I do I will post them on the blog. For right now, please mark your calendars for October 10th. I will have contact information for you soon, but don't plan anything else for that day. Get your foursome together now! I can tell you that it will be at Hampshire Country Club and I believe they have both courses reserved. The guys that are planning this are super dynamic and will do a great job. I know it will be a blast. (NOTE TO HEATHER: Wanna tailgate? Or would you rather drive the cart -- watch out for the sand traps!) I am looking forward to it already!
Johnny feels fantastic today. He looks really good, too. Totally hot. We will probably make out tonight. I know, I'm a lucky girl: He is a nice guy and butt-smokin' hot. (Used your favorite adjective again, Pee Wee. )
Good days are the best. We are really just concentrating on making them the best they can be and preparing ourselves for Round 2. Johnny is really making his health the number 1 priority. Lots and lots of fresh fruits and veggies. Lots and lots of water. We have a list of questions for Monday concerning the medicines for nausea and hope to have that under control right out of the gates.
Keep praying. I have a story concerning prayer: The other day we had a patient in the cath lab that needed to have a valve replaced. He was having a heart cath to see if he also needed to have coronary artery bypass at the same time. The doctor checked the arteries and they were fine. Then he checked to see how tight the valve was. When he checked, the valve was no longer tight. Seriously, this guy had been progressively getting worse for the last 5 years and now suddenly his valve is fine. The doctor said, "What have you been doing, Man?" The guy said, "Praying." The doctor said, "No, really, have you been taking your medicine with anything else?" The patient said, "No, really I just started praying and started to feel better." I was computing the case and started to cry. But they were happy tears. I know prayer works. Keep praying.
And clicking.
He is a wonderful man. I totally credit him with finding this cancer much earlier than we would have with anyone else. He told us today that either something Johnny said at his initial visit or the way he said it just made him think that he needed a colonoscopy rather than less aggressive testing. He couldn't remember exactly what it was, but something told him to do it. (I think it was Someone.) I even sent him a thank you note after the diagnosis, thanking him for not blowing Johnny off with a "wait and see" attitude. I didn't actually use those words, but you get the idea. Today, he thanked us for the thank you note. Yeah, that's the kind of guy he is. He also told Johnny that he admired his attitude and concern for other's to get checked out.
As he was reviewing Johnny's results on the computer screen (Side Note: You can raise my taxes for the implementation of Electronic Medical Records any time you want!) He smiled and said, "Do you know you have gall stones?" It made all three of us laugh. How crazy is that? The findings were noted on the PET scan, but I don't think it was of a whole lot of importance to Dr. Ansari so he didn't mention it.
We are assuming that during the surgery for the liver and colon they will just remove the gall bladder, too. Might as well. Johnny said that he wants his appendix, tonsils, and wisdom teeth removed at the same time. "If I don't need them, I want 'em out!"
A few dear friends of our are planning a golf outing for Johnny. I don't have all the details yet, but when I do I will post them on the blog. For right now, please mark your calendars for October 10th. I will have contact information for you soon, but don't plan anything else for that day. Get your foursome together now! I can tell you that it will be at Hampshire Country Club and I believe they have both courses reserved. The guys that are planning this are super dynamic and will do a great job. I know it will be a blast. (NOTE TO HEATHER: Wanna tailgate? Or would you rather drive the cart -- watch out for the sand traps!) I am looking forward to it already!
Johnny feels fantastic today. He looks really good, too. Totally hot. We will probably make out tonight. I know, I'm a lucky girl: He is a nice guy and butt-smokin' hot. (Used your favorite adjective again, Pee Wee. )
Good days are the best. We are really just concentrating on making them the best they can be and preparing ourselves for Round 2. Johnny is really making his health the number 1 priority. Lots and lots of fresh fruits and veggies. Lots and lots of water. We have a list of questions for Monday concerning the medicines for nausea and hope to have that under control right out of the gates.
Keep praying. I have a story concerning prayer: The other day we had a patient in the cath lab that needed to have a valve replaced. He was having a heart cath to see if he also needed to have coronary artery bypass at the same time. The doctor checked the arteries and they were fine. Then he checked to see how tight the valve was. When he checked, the valve was no longer tight. Seriously, this guy had been progressively getting worse for the last 5 years and now suddenly his valve is fine. The doctor said, "What have you been doing, Man?" The guy said, "Praying." The doctor said, "No, really, have you been taking your medicine with anything else?" The patient said, "No, really I just started praying and started to feel better." I was computing the case and started to cry. But they were happy tears. I know prayer works. Keep praying.
And clicking.
Tuesday, July 28, 2009
Gaping Hole
As I mentioned yesterday, there was a little spot on the edge of Johnny's incision from his port that pulled apart a bit. Johnny called Dr. Delle Donne's office and got right in. Since Dr. Delle Donne was on vacation, Dr. Noveroske checked it for us. It was separated a little bit, but it wasn't red, inflamed or even oozy. He had the nurse put a couple more steri-strips on it and gave us a prescription for an antibiotic and sent us on our way. It made me feel better to know that the doctor wasn't too concerned about it. We will have Dr. Al-Fadhl check it tomorrow at Johnny's office visit and then again on Monday before he has Round 2 of chemo.
I didn't realize that Johnny was that concerned about it but mentioned it when we left the office. "Oh, by the way, don't ever use the term 'Gaping Hole' in reference to something on me." I guess when I was checking it last night I was a little concerned and told him we needed to call the doctor about the "gaping hole". I didn't realize that I struck terror in his poor little heart for the entire night. Ooops.
After we left the office today, we were walking in the parking garage and heard someone very obviously struggling and in a great deal of pain. Oooo-ing and Aaaaahh-ing in a very agonizing way. We walked between some cars to see if we could help and found no one. So, we walked a little farther down and heard this poor person again. We walked between two different cars to find whomever was struggling. Again, no one. Some guy across the garage saw us looking and yelled, "Pigeons!" Are you flippin' kidding me? But, yeah, it was pigeons. Are we that stupid or is it where our minds are these days? I like to think that we are just that incredibly compassionate.
I was thrust back into the real world of the cath lab again last night when I was called in at 11:30 p.m. Call completely blows. For anyone that has never been on call -- you have no idea how smart you were to choose a career that doesn't require call. I will steer my children far far away from anything in health care, just so they can have a life that actually includes family time. Seriously, I hate it that much. I got home at about 1:30 a.m. and finally fell asleep around 2:30. The adrenaline rush doesn't allow you to fall asleep quickly after a call in. Up at 6:30 to go back to work for my regular day and then worked until 6:30 p.m. this evening because, you guessed it -- I'm on call tonight, too. Really, I am very happy with my job most of the time. I work with great people, great doctors and actually do like what I do. Johnny having cancer has made simply leaving him at home an ordeal, let alone having to leave in the middle of the night and/or stay late the next day. I just don't want to be away. Simple as that.
Thanks to everyone that has come to my rescue with meals and goodies. Holy cow, you guys are good. Rachel Ray has nothing on you! Lori Brawley has offered to be our meal coordinator which is a great help. Johnny has taken a couple phone calls from friends and then forgets what they said or the date that they want to bring something. You can see how this would get interesting, right? So, if you are thinking about a meal, please contact Lori Brawley and she will tell you where/when there is a need. And thank you to EVERYONE for this great stress relief. Please contact Lori at home 269-684-7021 or by email at clbrawley@comcast.net. Thank you, Lori for doing this for us.
I didn't realize that Johnny was that concerned about it but mentioned it when we left the office. "Oh, by the way, don't ever use the term 'Gaping Hole' in reference to something on me." I guess when I was checking it last night I was a little concerned and told him we needed to call the doctor about the "gaping hole". I didn't realize that I struck terror in his poor little heart for the entire night. Ooops.
After we left the office today, we were walking in the parking garage and heard someone very obviously struggling and in a great deal of pain. Oooo-ing and Aaaaahh-ing in a very agonizing way. We walked between some cars to see if we could help and found no one. So, we walked a little farther down and heard this poor person again. We walked between two different cars to find whomever was struggling. Again, no one. Some guy across the garage saw us looking and yelled, "Pigeons!" Are you flippin' kidding me? But, yeah, it was pigeons. Are we that stupid or is it where our minds are these days? I like to think that we are just that incredibly compassionate.
I was thrust back into the real world of the cath lab again last night when I was called in at 11:30 p.m. Call completely blows. For anyone that has never been on call -- you have no idea how smart you were to choose a career that doesn't require call. I will steer my children far far away from anything in health care, just so they can have a life that actually includes family time. Seriously, I hate it that much. I got home at about 1:30 a.m. and finally fell asleep around 2:30. The adrenaline rush doesn't allow you to fall asleep quickly after a call in. Up at 6:30 to go back to work for my regular day and then worked until 6:30 p.m. this evening because, you guessed it -- I'm on call tonight, too. Really, I am very happy with my job most of the time. I work with great people, great doctors and actually do like what I do. Johnny having cancer has made simply leaving him at home an ordeal, let alone having to leave in the middle of the night and/or stay late the next day. I just don't want to be away. Simple as that.
Thanks to everyone that has come to my rescue with meals and goodies. Holy cow, you guys are good. Rachel Ray has nothing on you! Lori Brawley has offered to be our meal coordinator which is a great help. Johnny has taken a couple phone calls from friends and then forgets what they said or the date that they want to bring something. You can see how this would get interesting, right? So, if you are thinking about a meal, please contact Lori Brawley and she will tell you where/when there is a need. And thank you to EVERYONE for this great stress relief. Please contact Lori at home 269-684-7021 or by email at clbrawley@comcast.net. Thank you, Lori for doing this for us.
Monday, July 27, 2009
Back to Normal
I'm trying really hard to come up with something to entertain the masses, and yet nothing happened today that will entertain you.
OK, I could tell you all about what happened today at work, but what with HIPPA I would get into a lot of trouble, so I won't do that.
I could tell you that Johnny went to work today, too, and walked around talking to everyone and in general had a good time. Like he does all the time at work. Honestly, he has the best job in the world. He works for a great company that is really taking GREAT care of him with this cancer bit. He is "on location" for a company that appreciates him and is also taking very good care of him. The people he works with are good friends and call all the time to check on him. He was there a few hours, but then hit a wall and needed to come home and sleep for a while. That's ok.
My only concern for today is that the incision site for the port has pulled open a little bit on one side. I don't want any infection concerns, so tomorrow we will need to check with the doctor. I'm sure it just needs to be cleaned out and possibly re-stitched a bit on the edge, if they even do that. Not sure. It will be taken care of tomorrow, I promise.
Quinn and Jake were at MIL and FIL's all weekend, so tonight with them home, and me and Johnny tired from work it seems like any other night at the Brawley's. Really, that is how exciting it is . . . life feels so normal today. I love normal. It is even a bit boring, and yet I love it all the same.
Thanks for checking in on Johnny. We really do appreciate it. Please keep the comments coming -- I read them to Johnny while he lounges on the couch and I'm messing around on the computer. I feel like it validates the incredible amount of time I can waste on this machine!
Mark 11:24 Therefore I tell you, whatever you ask for in prayer, believe that you have received it and it will be yours.
OK, I could tell you all about what happened today at work, but what with HIPPA I would get into a lot of trouble, so I won't do that.
I could tell you that Johnny went to work today, too, and walked around talking to everyone and in general had a good time. Like he does all the time at work. Honestly, he has the best job in the world. He works for a great company that is really taking GREAT care of him with this cancer bit. He is "on location" for a company that appreciates him and is also taking very good care of him. The people he works with are good friends and call all the time to check on him. He was there a few hours, but then hit a wall and needed to come home and sleep for a while. That's ok.
My only concern for today is that the incision site for the port has pulled open a little bit on one side. I don't want any infection concerns, so tomorrow we will need to check with the doctor. I'm sure it just needs to be cleaned out and possibly re-stitched a bit on the edge, if they even do that. Not sure. It will be taken care of tomorrow, I promise.
Quinn and Jake were at MIL and FIL's all weekend, so tonight with them home, and me and Johnny tired from work it seems like any other night at the Brawley's. Really, that is how exciting it is . . . life feels so normal today. I love normal. It is even a bit boring, and yet I love it all the same.
Thanks for checking in on Johnny. We really do appreciate it. Please keep the comments coming -- I read them to Johnny while he lounges on the couch and I'm messing around on the computer. I feel like it validates the incredible amount of time I can waste on this machine!
Mark 11:24 Therefore I tell you, whatever you ask for in prayer, believe that you have received it and it will be yours.
Sunday, July 26, 2009
Stuck in A Clockwork Orange
OK, maybe Zofran isn't the drug for Johnny.
Last night it was the only medicine he took at bedtime and like the night before, it produced some crazy dreams. At least this time I got to keep the covers.
The dreams were very bizarre and much like A Clockwork Orange. It seems that Johnny was helping at my cousin's wedding with multiple tasks to accomplish including watching all of the kids. Then it turned to trying to get some medication and in doing so meant that he had to take on three carp-shooting lesbian girls. If they didn't make it by 7:00 the girls would literally kick their butts. His brothers were all with him and trying to make it by 7, but they had to go through a maze of homes that were all connected. Then when he would "wake up" the bedroom was strange colors: pink, purple, plaid, spatters. He would say to himself, "I know my room is white." But the colors wouldn't leave. He also saw black orbs that looked like Lego's outside the window and knew that they were UFOs, but couldn't rationalize them away either. He would fall asleep, wake up, look at the clock and only 15 minutes had passed. So went his entire night.
But here is the good news -- he ate a great breakfast (mashed potatoes, scrambled eggs, toast and sausage gravy -- Hey, it was what he wanted so I made it!). He was up for a little while, but did need an early nap due to the lack of sleep during the night. Then he got up and has been up the ENTIRE DAY! We even walked over to the neighbor's for a while.
Since he feels like eating, he went through the information provided to us by the oncologist that tells the important foods to eat. We made a shopping list based on those recommendations and then went shopping. I was totally prepared this time! No trip in the car without the right supplies ever again. Even after we got home he didn't take a nap.
MIL and FIL have Sunday dinner at their house when they are here at home (as opposed to Up North) and we went out there at 4:3o. Johnny ate a really good dinner of Ginger's homemade potato soup and salad and then we came home.
He is definitely ready for bed and probably won't need to take anything tonight for nausea.
I knew by Johnny's eyes this morning that it was going to be a good day. They were shiny again for the first time since Tuesday. He was smiling and conversational today, too. It was nice to have him back. I know it was only a few days of him not feeling well and staying quiet, but I missed him.
I'm glad we have a week to recuperate before starting this all over again. I think we feel better armed for the next assault and will most definitely ask for different anti-emetics. The Zofran has to go!
To the Rauch Family: Hey, there was something in my pan when you returned it! Great trick. I'm going to have to remember that in the future. Thanks so much, really. You guys are great and the help with meals is invaluable. My kids are so happy because as most of you know, Johnny is the cook in our family. Once when Johnny was going away on a fishing/hunting trip the kids asked how we were going to eat. I told them I was going to cook and they said, "Oh, great." Nice, huh? They feel much better knowing that I'm not solely responsible for all of the meals these days.
Thank you from the bottom of our hearts -- or more importantly the heart of our bottoms which is precisely where this all got started, isn't it?
Last night it was the only medicine he took at bedtime and like the night before, it produced some crazy dreams. At least this time I got to keep the covers.
The dreams were very bizarre and much like A Clockwork Orange. It seems that Johnny was helping at my cousin's wedding with multiple tasks to accomplish including watching all of the kids. Then it turned to trying to get some medication and in doing so meant that he had to take on three carp-shooting lesbian girls. If they didn't make it by 7:00 the girls would literally kick their butts. His brothers were all with him and trying to make it by 7, but they had to go through a maze of homes that were all connected. Then when he would "wake up" the bedroom was strange colors: pink, purple, plaid, spatters. He would say to himself, "I know my room is white." But the colors wouldn't leave. He also saw black orbs that looked like Lego's outside the window and knew that they were UFOs, but couldn't rationalize them away either. He would fall asleep, wake up, look at the clock and only 15 minutes had passed. So went his entire night.
But here is the good news -- he ate a great breakfast (mashed potatoes, scrambled eggs, toast and sausage gravy -- Hey, it was what he wanted so I made it!). He was up for a little while, but did need an early nap due to the lack of sleep during the night. Then he got up and has been up the ENTIRE DAY! We even walked over to the neighbor's for a while.
Since he feels like eating, he went through the information provided to us by the oncologist that tells the important foods to eat. We made a shopping list based on those recommendations and then went shopping. I was totally prepared this time! No trip in the car without the right supplies ever again. Even after we got home he didn't take a nap.
MIL and FIL have Sunday dinner at their house when they are here at home (as opposed to Up North) and we went out there at 4:3o. Johnny ate a really good dinner of Ginger's homemade potato soup and salad and then we came home.
He is definitely ready for bed and probably won't need to take anything tonight for nausea.
I knew by Johnny's eyes this morning that it was going to be a good day. They were shiny again for the first time since Tuesday. He was smiling and conversational today, too. It was nice to have him back. I know it was only a few days of him not feeling well and staying quiet, but I missed him.
I'm glad we have a week to recuperate before starting this all over again. I think we feel better armed for the next assault and will most definitely ask for different anti-emetics. The Zofran has to go!
To the Rauch Family: Hey, there was something in my pan when you returned it! Great trick. I'm going to have to remember that in the future. Thanks so much, really. You guys are great and the help with meals is invaluable. My kids are so happy because as most of you know, Johnny is the cook in our family. Once when Johnny was going away on a fishing/hunting trip the kids asked how we were going to eat. I told them I was going to cook and they said, "Oh, great." Nice, huh? They feel much better knowing that I'm not solely responsible for all of the meals these days.
Thank you from the bottom of our hearts -- or more importantly the heart of our bottoms which is precisely where this all got started, isn't it?
Saturday, July 25, 2009
Monster Wrestling
Nightmares plagued Johnny last night. Very strange, indeed. At one point I woke up with absolutely no sheet or blanket covering me. I reached to the end of the bed where they would normally be kicked to, but nothing was there. Johnny was stirring a little so I said, "I don't have any covers." He shouted, "I CAN'T HELP YOU!" And then promptly laid back down and went to sleep.
Well, ok then.
So I looked over on his side of the bed and saw all of the blankets in a heap. Evidently he had been wrestling dangerous monsters and was holding them hostage on his side of the bed. For a minute I contemplated crawling into the bed I had made myself on the floor when Johnny was struggling Wednesday night, but I decided to just grab the top sheet from his monster pile and hope that I didn't let one escape.
We both woke up a little after 7:00 this morning and I asked him what happened last night. "Geez, I was fighting monsters all night." Poor baby, maybe the monsters were the cancers letting him know that they are pissed off that he is trying to eliminate them. I was happy that he was victorious in his dream. Maybe that is the omen we are looking for.
He doesn't remember yelling at me. I have to admit, it made me giggle because he was so incredibly serious when he said it. Kinda like he was fighting monsters and I came along asking for help with the blankets or something.
I got up and made pancakes for breakfast. It was what sounded good to Johnny, so we went for it. He did manage to eat two, then headed back to bed. After a while he got up, took a bath and got dressed in real clothes!
He wanted to try to go out. I wasn't sure what exactly he wanted to do, so I said, "You want to go get some new shoes?" Because I know how happy new shoes (or a purse or luxury bath products) make me feel. "Sure."
He got in the car feeling pretty decent. We headed to Dick's Sporting Goods and got as far as Target and I noticed his color going downhill fast. "Do you still want to go?" "Yep, I'll try it."
We did manage to make it in the store, buy shoes in record time and get back in the car. Success. Seriously, I think we were in the store 11 minutes. On the way home we didn't fair so well. I had to pull over for him, and then was kicking myself for not thinking of giving him his nausea meds before we left the house. That was pretty stupid of me, I know. I also had nothing in the car for after -- you know like a kleenex, paper towel, napkin -- nothing. Shizzle.
OK, I'll chalk that one up to experience. Note to self: Take nausea meds before leaving, keep paper towels in the car, follow your gut -- if he looks bad, he feels bad. Turn around and just go home next time. Duh. I promise I will get better and this care-taking business. This is all new to me, kinda like when you bring your baby home from the hospital and you really have no clue but feel like you should since they trusted you to bring him home and all.
Now that we are back home, I've loaded him up with drugs again and he is sleeping in bed. I know he wanted to try getting out, but I think it was a little too soon.
I hope he gets more rest while napping. Monster wrestling makes you crazy tired.
Well, ok then.
So I looked over on his side of the bed and saw all of the blankets in a heap. Evidently he had been wrestling dangerous monsters and was holding them hostage on his side of the bed. For a minute I contemplated crawling into the bed I had made myself on the floor when Johnny was struggling Wednesday night, but I decided to just grab the top sheet from his monster pile and hope that I didn't let one escape.
We both woke up a little after 7:00 this morning and I asked him what happened last night. "Geez, I was fighting monsters all night." Poor baby, maybe the monsters were the cancers letting him know that they are pissed off that he is trying to eliminate them. I was happy that he was victorious in his dream. Maybe that is the omen we are looking for.
He doesn't remember yelling at me. I have to admit, it made me giggle because he was so incredibly serious when he said it. Kinda like he was fighting monsters and I came along asking for help with the blankets or something.
I got up and made pancakes for breakfast. It was what sounded good to Johnny, so we went for it. He did manage to eat two, then headed back to bed. After a while he got up, took a bath and got dressed in real clothes!
He wanted to try to go out. I wasn't sure what exactly he wanted to do, so I said, "You want to go get some new shoes?" Because I know how happy new shoes (or a purse or luxury bath products) make me feel. "Sure."
He got in the car feeling pretty decent. We headed to Dick's Sporting Goods and got as far as Target and I noticed his color going downhill fast. "Do you still want to go?" "Yep, I'll try it."
We did manage to make it in the store, buy shoes in record time and get back in the car. Success. Seriously, I think we were in the store 11 minutes. On the way home we didn't fair so well. I had to pull over for him, and then was kicking myself for not thinking of giving him his nausea meds before we left the house. That was pretty stupid of me, I know. I also had nothing in the car for after -- you know like a kleenex, paper towel, napkin -- nothing. Shizzle.
OK, I'll chalk that one up to experience. Note to self: Take nausea meds before leaving, keep paper towels in the car, follow your gut -- if he looks bad, he feels bad. Turn around and just go home next time. Duh. I promise I will get better and this care-taking business. This is all new to me, kinda like when you bring your baby home from the hospital and you really have no clue but feel like you should since they trusted you to bring him home and all.
Now that we are back home, I've loaded him up with drugs again and he is sleeping in bed. I know he wanted to try getting out, but I think it was a little too soon.
I hope he gets more rest while napping. Monster wrestling makes you crazy tired.
Friday, July 24, 2009
Sleepy
If I had to choose one single adjective to describe Johnny today, it would be sleepy. (And since this is a family show, I'll stop right there.)
The poopies and pukies have subsided, but the overwhelming tiredness remains. So he sleeps. He has actually been asleep so much since Tuesday, that he thought today was Thursday. We aren't really sure which day he missed out on, but either Wednesday or Thursday didn't even exist for him. No matter, it is Friday and he is visibly better.
MIL and FIL came over today and stayed with Johnny the whole time I was at work. Seriously, I could hire these two dynamos out. They completely weeded the back yard, sorted all of our returnable/non-returnable cans, cleaned out all the coolers in our garage (we are Brawley's -- do you know how many coolers we have?), cleaned up the garage, and completely finished every stitch of dirty laundry in the house. What did I tell you? They are AWESOME! Oh, and today is their anniversary. Happy Anniversary, John and Ginger. I'm glad you two fell in love.
My sister, Carla, made dinner for us tonight (Good job, Boomer!) and Johnny was up long enough to eat, sat and talked for several minutes and then headed back to bed. So far no sewer shouting, so things are looking up.
Sonya, I love you. Thanks for the Blessings jar. Seems tonight I've needed a bunch of hugs and kisses! (Sonya and I have been friends since we were 4 years old. She taught me how to ride a bike. We also dressed up in a prom dresses together in junior high and walked around the block, just so we could pretend like we were going to the prom. Yeah, she's that kind of friend!) The first blessing I pulled out was:
The poopies and pukies have subsided, but the overwhelming tiredness remains. So he sleeps. He has actually been asleep so much since Tuesday, that he thought today was Thursday. We aren't really sure which day he missed out on, but either Wednesday or Thursday didn't even exist for him. No matter, it is Friday and he is visibly better.
MIL and FIL came over today and stayed with Johnny the whole time I was at work. Seriously, I could hire these two dynamos out. They completely weeded the back yard, sorted all of our returnable/non-returnable cans, cleaned out all the coolers in our garage (we are Brawley's -- do you know how many coolers we have?), cleaned up the garage, and completely finished every stitch of dirty laundry in the house. What did I tell you? They are AWESOME! Oh, and today is their anniversary. Happy Anniversary, John and Ginger. I'm glad you two fell in love.
My sister, Carla, made dinner for us tonight (Good job, Boomer!) and Johnny was up long enough to eat, sat and talked for several minutes and then headed back to bed. So far no sewer shouting, so things are looking up.
Sonya, I love you. Thanks for the Blessings jar. Seems tonight I've needed a bunch of hugs and kisses! (Sonya and I have been friends since we were 4 years old. She taught me how to ride a bike. We also dressed up in a prom dresses together in junior high and walked around the block, just so we could pretend like we were going to the prom. Yeah, she's that kind of friend!) The first blessing I pulled out was:
When you are the neediest, He is the most sufficient.
When you are completely helpless, He is the most helpful.
When you feel totally dependent, He is absolutely dependable.
When you are the weakest, He is the most able.
When you are the most alone, He is intimately present.
When you feel you are the least, He is the greatest.
When you feel the most useless, He is preparing you.
When it is the darkest, He is the only Light you need.
When you feel the least secure, He is your Rock and Fortress.
When you are the most humble, He is most gracious.
When you can't, He can.
Thank you to the Bakerson's for tomorrow night's dinner. Michelle, thanks so much for making us lasagna! We love it! And Michael, thanks for delivering dinner and for helping out with the soccer situation. It really means a lot to all of us, especially Jake. You guys are great friends, and we appreciate everything you have done. Love the plaque -- Love conquers all. Yes it does. Can I pay you back by giving you a pet raccoon? :)
This weekend is the Relay for Life at Niles High School. I'm not sure if we will make it, physically or emotionally. It takes on a whole new meaning when you are knee-deep in it, and I think it may be too fresh for us this year. Whatever Johnny wants to do, we will do. Not sure. What a worthwhile fundraiser this is, though, so I hope as many people as possible can walk or contribute. Cancer affects just about everyone at some point in their life, whether it is a family member, friend, co-worker, whatever. It is nearly impossible to remain unscathed by this evil beast. When I say my prayers every night/day/minute I not only pray for Johnny, but an end to cancer forever. I know there is a cure out there, we just have to nail it down. Please consider contributing.
Thanks for all the continued support through prayer. Prayers are going up around the planet tonight because of our friends: Switzerland, Italy, France, Egypt, Romania, India, Germany, and England have all reported in on the Toad Prayer Line. We need them here at home, too, so no fair stopping yet. We are putting our faith in these prayers and know that they are being heard. Just remember Mark 11:24. We believe.
Love to you all.
Thursday, July 23, 2009
5-FU
Still quiet in our house today. My Johnny had a rough night and without going into unnecessary details, let me just say it was just like you'd think it would be for a guy on chemotherapy.
I made sure that his meds were ready every 4 hours (actually closer to 3 1/2 hours most of the time, but don't tell anyone). Finally at about 4:00 this morning he asked for Vicodin to go along with the Compazine and Ativan. The area around the port was aching, so we went with the maximum dose there, too. After about 40 minutes I could hear him snoring and I was relieved that he had actually fallen asleep.
I called Ginger at 6:30 a.m. to ask if she would come over and stay with him while I went to work. I didn't want him to be alone, and I didn't want the kids to bear the responsibility of taking care of their dad with all of this. Ginger, of course, came right over. I know it is so hard on her to go through this (it isn't easy on anyone). Johnny is her baby after all. I couldn't stand the thought of not being able to take care of one of my boys, no matter how old. So, Ginger will always be my first "Go To" for the care-taking of Johnny. He is most comfortable with her, anyway, so it all works out.
Dr. Ansari's office called in a different medicine to try (Zofran) so I picked that up on my way home to unhook his pump. Right when I got home I took the pump off of him so that he could finally get comfortable. (And no, I never said "Whoops!" ) I flushed the lines and thought, "Oh, crap. This is flushing the rest of the medicine into him pretty quickly." A bigger bolus than just the 2.5 cc's per hour that had been infusing over the last 46 hours.
He felt pretty good for a while, and got up to take a bath and change jammies. Then the last "line flushing" bolus hit. Dang, back to the bucket.
I'm hoping that since the pump is now off, his night will be much more restful. He is going to get the mother load of nausea meds: Zofran, Compazine, Ativan and even the Vicodin thrown in for good measure. He just told me that he is already feeling a little better, and then turned around and went right back to bed.
I think the weakness has really surprised him, as it has me. This 5-FU stuff (the medicine on the pump) is evil and I think is the reason he got so sick. I hope this means that we caught the liver and colon off guard and the chemo is wreaking havoc right now. I like the name 5-FU, though. It is what I thought of all last night: FU cancer, FU.
I made sure that his meds were ready every 4 hours (actually closer to 3 1/2 hours most of the time, but don't tell anyone). Finally at about 4:00 this morning he asked for Vicodin to go along with the Compazine and Ativan. The area around the port was aching, so we went with the maximum dose there, too. After about 40 minutes I could hear him snoring and I was relieved that he had actually fallen asleep.
I called Ginger at 6:30 a.m. to ask if she would come over and stay with him while I went to work. I didn't want him to be alone, and I didn't want the kids to bear the responsibility of taking care of their dad with all of this. Ginger, of course, came right over. I know it is so hard on her to go through this (it isn't easy on anyone). Johnny is her baby after all. I couldn't stand the thought of not being able to take care of one of my boys, no matter how old. So, Ginger will always be my first "Go To" for the care-taking of Johnny. He is most comfortable with her, anyway, so it all works out.
Dr. Ansari's office called in a different medicine to try (Zofran) so I picked that up on my way home to unhook his pump. Right when I got home I took the pump off of him so that he could finally get comfortable. (And no, I never said "Whoops!" ) I flushed the lines and thought, "Oh, crap. This is flushing the rest of the medicine into him pretty quickly." A bigger bolus than just the 2.5 cc's per hour that had been infusing over the last 46 hours.
He felt pretty good for a while, and got up to take a bath and change jammies. Then the last "line flushing" bolus hit. Dang, back to the bucket.
I'm hoping that since the pump is now off, his night will be much more restful. He is going to get the mother load of nausea meds: Zofran, Compazine, Ativan and even the Vicodin thrown in for good measure. He just told me that he is already feeling a little better, and then turned around and went right back to bed.
I think the weakness has really surprised him, as it has me. This 5-FU stuff (the medicine on the pump) is evil and I think is the reason he got so sick. I hope this means that we caught the liver and colon off guard and the chemo is wreaking havoc right now. I like the name 5-FU, though. It is what I thought of all last night: FU cancer, FU.
Wednesday, July 22, 2009
Icky
It was silly to think that Johnny would be able to go through this whole cancer thing without so much as a sick day. It was silly, but I still hoped for it. I was wrong.
He has been asleep/sleepy most of the day. The nausea started pretty early so he took some meds to help (Compazine/Ativan) but by this evening it became perfectly clear that Johnny is a cancer patient on chemotherapy. It made me so sad.
I am trying really hard to not be a wuss, but as the evening wears on I find it more difficult. I know Johnny is worried about me and it makes me mad (at myself) when I am teary in front of him. I try to keep in mind the words of a very good friend, "Suck it up, this isn't about you. Be strong for him and the kids and fall apart on your own time." No seriously, sometimes I need to hear it like that. Thanks, Ulysses.
So, our house is very quiet tonight. The boys ate dinner at Angie's (thanks, sis) and I just keep rearranging magazines and trying to figure out what I can do to help. Which, evidently, is to rearrange magazines.
Please pray that the Ickies go away quickly and that Johnny can get some much needed rest tomorrow. After the pump comes out tomorrow afternoon, I know that he will be more comfortable and at least be able to get comfy in bed. It is really hard to sleep on a leash.
If there are any friends out there from Bowne reading this post, I would just like you to know that you are the most amazing people. You have no idea how comforting your gift is to us. With anything as unplanned as cancer, the future can seem pretty scary. Thank you for making it seem managable.
Matt, from the bottom of our hearts -- thank you. You and Angie are the two people that feel this the closest and your generosity is more than overwhelming. This is why Johnny wanted you guys on our team all those years ago.
"Always surround yourself with good people." -- Johnny Brawley
And when times are tough, you discover exactly how good those people can be.
He has been asleep/sleepy most of the day. The nausea started pretty early so he took some meds to help (Compazine/Ativan) but by this evening it became perfectly clear that Johnny is a cancer patient on chemotherapy. It made me so sad.
I am trying really hard to not be a wuss, but as the evening wears on I find it more difficult. I know Johnny is worried about me and it makes me mad (at myself) when I am teary in front of him. I try to keep in mind the words of a very good friend, "Suck it up, this isn't about you. Be strong for him and the kids and fall apart on your own time." No seriously, sometimes I need to hear it like that. Thanks, Ulysses.
So, our house is very quiet tonight. The boys ate dinner at Angie's (thanks, sis) and I just keep rearranging magazines and trying to figure out what I can do to help. Which, evidently, is to rearrange magazines.
Please pray that the Ickies go away quickly and that Johnny can get some much needed rest tomorrow. After the pump comes out tomorrow afternoon, I know that he will be more comfortable and at least be able to get comfy in bed. It is really hard to sleep on a leash.
If there are any friends out there from Bowne reading this post, I would just like you to know that you are the most amazing people. You have no idea how comforting your gift is to us. With anything as unplanned as cancer, the future can seem pretty scary. Thank you for making it seem managable.
Matt, from the bottom of our hearts -- thank you. You and Angie are the two people that feel this the closest and your generosity is more than overwhelming. This is why Johnny wanted you guys on our team all those years ago.
"Always surround yourself with good people." -- Johnny Brawley
And when times are tough, you discover exactly how good those people can be.
Tuesday, July 21, 2009
One Down . . .
At 8:00 a.m. we opened our first can of cancer ass whoopin'. And it felt good.
We felt like such newbies. When we got there the gate to the infusion area was still closed. The receptionist told us, "As soon as the gate opens you can go back."
"Just like Disneyworld," Johnny said.
So we followed about six people that new the drill. We all signed the little clipboard that announced our arrival and took a seat. We had no idea what to expect.
Mary, our nurse (and coincidentally a former physical trainer for Danny Brawley's football team), showed us the ropes. She took us into the Port Room. Sounds like we would receive a nice glass of red wine, but they were talking about Johnny's port-a-cath. Dang.
She removed the dressing over the incision and announced that it looked great. I knew it would, because of the whole butt-smokin' hot correlation with healing that Johnny has goin' on. She cleaned it all up and prepped the area and then explained the process. It really is pretty easy, and once she had the port accessed with the infusion tubing, we went out to find our comfy spot for the next 5 hours.
There were a total of 4 medications that dripped in at different times while we were there. First was the nausea medication that dripped in over 15 minutes. They let that ruminate for another 15 minutes or so and then started the Big Guns. I watched the first drip travel the entire length of the tubing, cheering it on as it went, "GO! GO! GO! GO!" I really wanted to do a couple old cheerleading jumps to wow the crowd, but since most of them were already asleep, I did actually restrain myself. I know, see how far I've come!
Ginger and John (Crazy MIL and FIL) brought Quinn and Jake up at lunchtime. It was important to me that the boys see the environment and understand what exactly happens. They haven't yet been to any of the appointments with us, so I thought they should at least see this part. I think we may take them with us to the next appointment with Dr. Ansari, because I would like them to hear how reassuring he really is. Thanks again, Ginger, I know I can always count on you. Always. (Side note: I have said it a million times, and I really do mean it: I won the in-law lottery with John and Ginger!)
The very last medication given lasts for 46 hours, so that came home with Johnny on a little pump that is still attached by tubing to his port. He gets to wear a totally sexy fanny pack with his pump in it until Thursday. Mary trained me on removing the pump and flushing the port. Poor Johnny was nervous about this, but seriously for all my cath lab/medical friends, it is exactly like flushing an art line. No more difficult than that. So I can totally handle that on Thursday. I plan on saying things like, "Oh crap!" and "Whoops." a lot when I am flushing it, just to make it interesting.
We had to stop at Wal-Mart on the way home to get a couple prescriptions and then finally made it home just after 3:00. We both got cold drinks at Wal-Mart and in the car, Johnny said that the coldness from the bottle was hurting his hand, just like they had told us. This cold sensitivity thing is really weird. It feels like the object is uber cold with a little "electric shock" feeling to it. Weird. When he drank something cold it made his throat feel really sore, so obviously he went to room temperature drinks. Mmmm, thirst quenching!
At about 7:30 he thought he should take something for nausea. He wasn't feeling too bad, but had a tight feeling in his tummy. He wasn't sure if he ate too much for dinner (THANKS, Mom!) or what, so he took a compazine. One hour later he feels fine. I think he looks a little pale, but he promises that he doesn't feel bad at all.
They told us that today and tomorrow Johnny will probably feel pretty good. It is at about the 48-72 hour mark post infusion that he will start to feel crummy. That makes it Thursday and Friday this week. I worry about that; I know how Johnny hates to feel yucky and I hate to see him struggle with anything. I hope he doesn't barf. . . he is the world's worst barfer! No, seriously. It truly sounds like he is screaming at someone in the sewer when he throws up. He could wake the neighbors! I promise I will handle it if it happens -- this is where that whole, "in sickness and in health" thing comes into play and I am totally up for it.
Today was a completely good day. Nobody cried. At. All. I just hope Johnny gets a good night's sleep with that darn pump attached to him. I know he is worried about it, but we will get it figured out. He goes back in two weeks on Monday, August 3rd for his next cycle.
I feel sorry for you cancer. You have no idea who you were messin' with.
We felt like such newbies. When we got there the gate to the infusion area was still closed. The receptionist told us, "As soon as the gate opens you can go back."
"Just like Disneyworld," Johnny said.
So we followed about six people that new the drill. We all signed the little clipboard that announced our arrival and took a seat. We had no idea what to expect.
Mary, our nurse (and coincidentally a former physical trainer for Danny Brawley's football team), showed us the ropes. She took us into the Port Room. Sounds like we would receive a nice glass of red wine, but they were talking about Johnny's port-a-cath. Dang.
She removed the dressing over the incision and announced that it looked great. I knew it would, because of the whole butt-smokin' hot correlation with healing that Johnny has goin' on. She cleaned it all up and prepped the area and then explained the process. It really is pretty easy, and once she had the port accessed with the infusion tubing, we went out to find our comfy spot for the next 5 hours.
There were a total of 4 medications that dripped in at different times while we were there. First was the nausea medication that dripped in over 15 minutes. They let that ruminate for another 15 minutes or so and then started the Big Guns. I watched the first drip travel the entire length of the tubing, cheering it on as it went, "GO! GO! GO! GO!" I really wanted to do a couple old cheerleading jumps to wow the crowd, but since most of them were already asleep, I did actually restrain myself. I know, see how far I've come!
Ginger and John (Crazy MIL and FIL) brought Quinn and Jake up at lunchtime. It was important to me that the boys see the environment and understand what exactly happens. They haven't yet been to any of the appointments with us, so I thought they should at least see this part. I think we may take them with us to the next appointment with Dr. Ansari, because I would like them to hear how reassuring he really is. Thanks again, Ginger, I know I can always count on you. Always. (Side note: I have said it a million times, and I really do mean it: I won the in-law lottery with John and Ginger!)
The very last medication given lasts for 46 hours, so that came home with Johnny on a little pump that is still attached by tubing to his port. He gets to wear a totally sexy fanny pack with his pump in it until Thursday. Mary trained me on removing the pump and flushing the port. Poor Johnny was nervous about this, but seriously for all my cath lab/medical friends, it is exactly like flushing an art line. No more difficult than that. So I can totally handle that on Thursday. I plan on saying things like, "Oh crap!" and "Whoops." a lot when I am flushing it, just to make it interesting.
We had to stop at Wal-Mart on the way home to get a couple prescriptions and then finally made it home just after 3:00. We both got cold drinks at Wal-Mart and in the car, Johnny said that the coldness from the bottle was hurting his hand, just like they had told us. This cold sensitivity thing is really weird. It feels like the object is uber cold with a little "electric shock" feeling to it. Weird. When he drank something cold it made his throat feel really sore, so obviously he went to room temperature drinks. Mmmm, thirst quenching!
At about 7:30 he thought he should take something for nausea. He wasn't feeling too bad, but had a tight feeling in his tummy. He wasn't sure if he ate too much for dinner (THANKS, Mom!) or what, so he took a compazine. One hour later he feels fine. I think he looks a little pale, but he promises that he doesn't feel bad at all.
They told us that today and tomorrow Johnny will probably feel pretty good. It is at about the 48-72 hour mark post infusion that he will start to feel crummy. That makes it Thursday and Friday this week. I worry about that; I know how Johnny hates to feel yucky and I hate to see him struggle with anything. I hope he doesn't barf. . . he is the world's worst barfer! No, seriously. It truly sounds like he is screaming at someone in the sewer when he throws up. He could wake the neighbors! I promise I will handle it if it happens -- this is where that whole, "in sickness and in health" thing comes into play and I am totally up for it.
Today was a completely good day. Nobody cried. At. All. I just hope Johnny gets a good night's sleep with that darn pump attached to him. I know he is worried about it, but we will get it figured out. He goes back in two weeks on Monday, August 3rd for his next cycle.
I feel sorry for you cancer. You have no idea who you were messin' with.
Monday, July 20, 2009
Game On!
WOOT!
I have to tell you, the last 24 hours sucked big time. Johnny and I were both scared to death that a giant piano was going to fall on our heads and we were going to find out more bad news from the PET/MRI scan. Without futher ado, here is what we found out:
There is nothing new to report. What we knew before is what we are dealing with -- Colon cancer with metastatic liver disease. OK, diagnosis still stinks, but there is nothing hiding out in his lungs or other organs.
The liver lesion is 3.5 cm x 3.0 cm. Exactly what we knew before. The other "multiple" smaller lesions barely enhanced on the MRI which means they are "immature" and will probably disappear with chemo. The lesion itself is straddling the two lobes, which makes surgery a little more tricky. Dr. Ansari told us that he will send us somewhere else for surgery. No one in South Bend fits his/our criteria.
While talking with Dr. Ansari (and finally breathing again) he answered almost every single question that I had written down before I even asked him. He would say, "Now you are wondering why we won't do a liver biopsy, and I will tell you." So then I would cross that question off my list. The only question I ended up asking was, "Is the chemo toxic to other organs?" To which he replied, "Well, the liver, but that is the point, right?" Touche.
I was concerned about cure vs. "buying time". He said, "Our goal is always remission." Remission can last forever, but an oncologist is never going to use the word "cure". Which makes sense to me.
We asked about a second opinion and whether MD Anderson was our best option or if there was someplace else we should consider. He said our concern for a second opinion should only be for the liver surgery. We actually felt confident with this and we will see how things go with the first several round of chemo and the rescans.
Every single lab value was normal. Including the liver enzymes. How crazy is that?
On to chemotherapy. We start tomorrow morning at 8 a.m. The infusions will run for 5 hours while we are there, and then one last infusion will come home with us on a pump for 46 hours. The first time Johnny will have to go back to have it removed and they will train us to do it for the subsequent infusions. I'm pretty sure I can handle that. Infusions are only once every two weeks.
As far as side effects, the only ones that they are concerned about seem to be fevers/chills, nose bleeds, and this bizzare cold sensitivity that makes you feel like you are being shocked if you touch something cold. Also, drinking cold things can make you feel like your throat is closing, so they tell you to just drink lukewarm beverages for 72 hours post infusion.
The day of infusion and the day after should be pretty good because of the medications they give during treatment. They warned us that 72-96 hours after treatment may be the "bad" days. We hope for the best with this, but can't wear our rose-colored glasses all the time. Obviously he is going to get sick. We will just minimize his symptoms where ever and when ever we can.
Ahhhhhhhh. I feel so much better today.
Again, thanks to EVERYONE for the continued prayers, wine, food, cards and visits. I told Johnny yesterday after a steady stream of visitors throughout the day that it has actually been "fun" (yeah, relative term) to see all the friends that we have over the last 10 days. I would encourage everyone to visit or call an old friend just to say "hi". We have loved every single conversation, especially when it didn't revolve around the "C" word.
This is my Johnny story for this post: Today we were driving to the appointment and I was trying VERY hard to pull it together and keep it together, but it wasn't working very well. What do you suppose passed us by as we were driving? A funeral procession about 2 miles long. Johnny started laughing. I said, "That isn't very funny." He said, "Now I know I'm gonna be OK because God and I have the same sense of humor." Then at the doctor's office I asked him where his "lucky" hat was. He said, "I don't need it. God told me to save it for hunting and fishing. He's got my back on this one." He got pretty emotional when he told me that, so I know he and God had a good long conversation last night. I'm glad they talked.
So, GAME ON, Cancer! God's got Johnny's back, and I've got everything else (along with my army of friends/family).
Your job is to keep praying. I hope you can handle that because we aren't going to cut you any slack. We all have jobs and they are all important.
Now I just feel like I'm rambling, so I guess I'll quit for now. Love to everyone.
I have to tell you, the last 24 hours sucked big time. Johnny and I were both scared to death that a giant piano was going to fall on our heads and we were going to find out more bad news from the PET/MRI scan. Without futher ado, here is what we found out:
There is nothing new to report. What we knew before is what we are dealing with -- Colon cancer with metastatic liver disease. OK, diagnosis still stinks, but there is nothing hiding out in his lungs or other organs.
The liver lesion is 3.5 cm x 3.0 cm. Exactly what we knew before. The other "multiple" smaller lesions barely enhanced on the MRI which means they are "immature" and will probably disappear with chemo. The lesion itself is straddling the two lobes, which makes surgery a little more tricky. Dr. Ansari told us that he will send us somewhere else for surgery. No one in South Bend fits his/our criteria.
While talking with Dr. Ansari (and finally breathing again) he answered almost every single question that I had written down before I even asked him. He would say, "Now you are wondering why we won't do a liver biopsy, and I will tell you." So then I would cross that question off my list. The only question I ended up asking was, "Is the chemo toxic to other organs?" To which he replied, "Well, the liver, but that is the point, right?" Touche.
I was concerned about cure vs. "buying time". He said, "Our goal is always remission." Remission can last forever, but an oncologist is never going to use the word "cure". Which makes sense to me.
We asked about a second opinion and whether MD Anderson was our best option or if there was someplace else we should consider. He said our concern for a second opinion should only be for the liver surgery. We actually felt confident with this and we will see how things go with the first several round of chemo and the rescans.
Every single lab value was normal. Including the liver enzymes. How crazy is that?
On to chemotherapy. We start tomorrow morning at 8 a.m. The infusions will run for 5 hours while we are there, and then one last infusion will come home with us on a pump for 46 hours. The first time Johnny will have to go back to have it removed and they will train us to do it for the subsequent infusions. I'm pretty sure I can handle that. Infusions are only once every two weeks.
As far as side effects, the only ones that they are concerned about seem to be fevers/chills, nose bleeds, and this bizzare cold sensitivity that makes you feel like you are being shocked if you touch something cold. Also, drinking cold things can make you feel like your throat is closing, so they tell you to just drink lukewarm beverages for 72 hours post infusion.
The day of infusion and the day after should be pretty good because of the medications they give during treatment. They warned us that 72-96 hours after treatment may be the "bad" days. We hope for the best with this, but can't wear our rose-colored glasses all the time. Obviously he is going to get sick. We will just minimize his symptoms where ever and when ever we can.
Ahhhhhhhh. I feel so much better today.
Again, thanks to EVERYONE for the continued prayers, wine, food, cards and visits. I told Johnny yesterday after a steady stream of visitors throughout the day that it has actually been "fun" (yeah, relative term) to see all the friends that we have over the last 10 days. I would encourage everyone to visit or call an old friend just to say "hi". We have loved every single conversation, especially when it didn't revolve around the "C" word.
This is my Johnny story for this post: Today we were driving to the appointment and I was trying VERY hard to pull it together and keep it together, but it wasn't working very well. What do you suppose passed us by as we were driving? A funeral procession about 2 miles long. Johnny started laughing. I said, "That isn't very funny." He said, "Now I know I'm gonna be OK because God and I have the same sense of humor." Then at the doctor's office I asked him where his "lucky" hat was. He said, "I don't need it. God told me to save it for hunting and fishing. He's got my back on this one." He got pretty emotional when he told me that, so I know he and God had a good long conversation last night. I'm glad they talked.
So, GAME ON, Cancer! God's got Johnny's back, and I've got everything else (along with my army of friends/family).
Your job is to keep praying. I hope you can handle that because we aren't going to cut you any slack. We all have jobs and they are all important.
Now I just feel like I'm rambling, so I guess I'll quit for now. Love to everyone.
Sunday, July 19, 2009
Ready for the Plan
Tomorrow is a big day.
I anxiously await and dread tomorrow, simultaneously. We have done all the work to prepare for tomorrow. MRI, PET scan, port placement -- check, check, and check. I have my list of questions prepared. I already feel sorry for Dr. Ansari because I know this list of questions is exhaustive, but I don't care. This is MY Johnny we are talking about. Do we need nutritional supplements? What about direct chemo infusion into the hepatic artery? What is our schedule for re-scanning? Is the chemo toxic to other organs? How do we protect them if it is? That is just the tip of the iceberg. I think I have 27 questions.
Johnny doesn't want to hear statistics and possible outcome percentages. He says that they don't apply to him because the numbers are not based on a 43-year-old, otherwise healthy man. True enough. But what I have to know: Are we looking at treatment as a cure or as a way to buy time?
Since I have absolutely no idea what tomorrow holds, please forgive us if we don't answer phones, texts, or emails for the day. I'll post if I can, but given the circumstances of tomorrow I just ask for patience and privacy. I know --- Pam Brawley asking for privacy! She has driven a car naked, but now wants privacy? Just this once.
Everyone's job for tomorrow is to pray like the dickens at 2:30. OK?
Mark 11: 24
I anxiously await and dread tomorrow, simultaneously. We have done all the work to prepare for tomorrow. MRI, PET scan, port placement -- check, check, and check. I have my list of questions prepared. I already feel sorry for Dr. Ansari because I know this list of questions is exhaustive, but I don't care. This is MY Johnny we are talking about. Do we need nutritional supplements? What about direct chemo infusion into the hepatic artery? What is our schedule for re-scanning? Is the chemo toxic to other organs? How do we protect them if it is? That is just the tip of the iceberg. I think I have 27 questions.
Johnny doesn't want to hear statistics and possible outcome percentages. He says that they don't apply to him because the numbers are not based on a 43-year-old, otherwise healthy man. True enough. But what I have to know: Are we looking at treatment as a cure or as a way to buy time?
Since I have absolutely no idea what tomorrow holds, please forgive us if we don't answer phones, texts, or emails for the day. I'll post if I can, but given the circumstances of tomorrow I just ask for patience and privacy. I know --- Pam Brawley asking for privacy! She has driven a car naked, but now wants privacy? Just this once.
Everyone's job for tomorrow is to pray like the dickens at 2:30. OK?
Mark 11: 24
Saturday, July 18, 2009
Looks Like a Junior Mint to Me
Friday morning came awfully early.
Our trip to Chicago on Thursday night was AMAZING! Seriously, Billy Joel and Elton John have been in the entertainment business for a million years for good reason! At first when we arrived at the Will Call booth, our tickets hadn't come down yet from the promoter that provided them to us. We tried to go get dinner, but evidently others had the same idea as well. We actually ordered dinner, but it never came. I wish I remembered the name of the restaurant, because I would post it on here and tell you all to NEVER go there. . . but alas, I don't.
We went back to the Will Call booth. . . still no tickets. I have to admit, I was getting a little nervous but I figured no matter what happened, it was a trip to Chicago and we could just go into town to get a proper dinner. Finally our tickets arrived. Molly handed them to us and when we looked at them, we saw that WE WERE ON THE FIELD! I didn't even care if we were in the bleachers, but the field was good, too. Molly had a printed map of the sections that she brought with her and our section was 'E'. ARE YOU KIDDING ME????!!!!
It just happens that Section E is center stage in the middle of center field at Wrigley. We were 14 rows away from Elton Frickin' John and Billy Flippin' Joel! Oh, man was that a great show. You really forget how many songs you know by both of them. I kept on thinking, "I forgot about that one." and "Oh, yeah, that is by him, too."
Johnny and I turned around at one point to look at the filled stadium from where we were, and I have to tell you. . . that was an awesome sight as well. Johnny said, "This is what the outfielder sees." So cool.
I made it through most of the concert without thinking of . . . you know. But for some reason, the song "Candle in the Wind" did me in. I tried really hard to pull it together so I wouldn't spoil the whole night and managed to by the end of the song. Isn't that weird? There is no connection with Marilyn Monroe and Johnny that I know of (other than his choice in women). I wasn't even that affected by Billy Joel's "Only the Good Die Young." Although I do love the line, "I'd rather laugh with the sinners than cry with the saints. The sinners are much more fun." We got home by 3 a.m.
Thanks again and again, Lonnie. And by the way -- which bedroom do you want?
We were off to the surgery center at 7:30. Johnny's port placement went very smoothly. We were done and out of there by about 11:30, I think. Crazy MIL (as on Molly's blog, this is what we call our Crazy Mother-in-law, Ginger) went with us again and it was nice to have here there with me. (And I'm not just writing this because Becky Hamm prints out the blog for my technologically-challenged MIL to read.) Hi, Ging.
Oh, and Donna -- Ginger wants me to tell you hello and that you have liquid refreshment on its way up to you when Pooh comes up. If Ginger had a computer/email/Facebook/cell phone she could do this herself, couldn't she? :)
I mentioned the Seinfeld reference of the Junior Mint episode in the last post and wouldn't you know, that is exactly what the port under the skin looks like. Dr. Delle Donne assured us that it is, in fact, the port-a-cath and not a Junior Mint.
So, again I am reaching out and asking for prayers for my Johnny. We are both a bit nervous about our appointment with Dr. Ansari on Monday (2:30). The potential for finding out more bad news is looming over us, and we hate that. On the other hand we will be armed with the chemo plan. Finally attacking this awful cancer will feel really good.
Mark 11:24
Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
And we believe . . .
Our trip to Chicago on Thursday night was AMAZING! Seriously, Billy Joel and Elton John have been in the entertainment business for a million years for good reason! At first when we arrived at the Will Call booth, our tickets hadn't come down yet from the promoter that provided them to us. We tried to go get dinner, but evidently others had the same idea as well. We actually ordered dinner, but it never came. I wish I remembered the name of the restaurant, because I would post it on here and tell you all to NEVER go there. . . but alas, I don't.
We went back to the Will Call booth. . . still no tickets. I have to admit, I was getting a little nervous but I figured no matter what happened, it was a trip to Chicago and we could just go into town to get a proper dinner. Finally our tickets arrived. Molly handed them to us and when we looked at them, we saw that WE WERE ON THE FIELD! I didn't even care if we were in the bleachers, but the field was good, too. Molly had a printed map of the sections that she brought with her and our section was 'E'. ARE YOU KIDDING ME????!!!!
It just happens that Section E is center stage in the middle of center field at Wrigley. We were 14 rows away from Elton Frickin' John and Billy Flippin' Joel! Oh, man was that a great show. You really forget how many songs you know by both of them. I kept on thinking, "I forgot about that one." and "Oh, yeah, that is by him, too."
Johnny and I turned around at one point to look at the filled stadium from where we were, and I have to tell you. . . that was an awesome sight as well. Johnny said, "This is what the outfielder sees." So cool.
I made it through most of the concert without thinking of . . . you know. But for some reason, the song "Candle in the Wind" did me in. I tried really hard to pull it together so I wouldn't spoil the whole night and managed to by the end of the song. Isn't that weird? There is no connection with Marilyn Monroe and Johnny that I know of (other than his choice in women). I wasn't even that affected by Billy Joel's "Only the Good Die Young." Although I do love the line, "I'd rather laugh with the sinners than cry with the saints. The sinners are much more fun." We got home by 3 a.m.
Thanks again and again, Lonnie. And by the way -- which bedroom do you want?
We were off to the surgery center at 7:30. Johnny's port placement went very smoothly. We were done and out of there by about 11:30, I think. Crazy MIL (as on Molly's blog, this is what we call our Crazy Mother-in-law, Ginger) went with us again and it was nice to have here there with me. (And I'm not just writing this because Becky Hamm prints out the blog for my technologically-challenged MIL to read.) Hi, Ging.
Oh, and Donna -- Ginger wants me to tell you hello and that you have liquid refreshment on its way up to you when Pooh comes up. If Ginger had a computer/email/Facebook/cell phone she could do this herself, couldn't she? :)
I mentioned the Seinfeld reference of the Junior Mint episode in the last post and wouldn't you know, that is exactly what the port under the skin looks like. Dr. Delle Donne assured us that it is, in fact, the port-a-cath and not a Junior Mint.
So, again I am reaching out and asking for prayers for my Johnny. We are both a bit nervous about our appointment with Dr. Ansari on Monday (2:30). The potential for finding out more bad news is looming over us, and we hate that. On the other hand we will be armed with the chemo plan. Finally attacking this awful cancer will feel really good.
Mark 11:24
Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
And we believe . . .
Thursday, July 16, 2009
Sanity Break Night
Short post today. Just want to let you all know that Johnny had the PET scan this morning and that went off without a hitch. We won't (don't want to) know the results until our Monday appointment with Dr. Ansari. We are just praying for no Whammies. Pray with us, please. No whammies, no whammies, no whammies!
The port placement is tomorrow at 9 a.m. We have to be there at 8 a.m. Again, please pray for easy port placement for the surgeon and guidance for his hands as he does the procedure. And sterile technique. And no junior mints falling in the opening as the surgeon works. (If you know what that reference is, leave a note and we will play Movie/TV trivia together sometime!)
So, tonight is Sanity Break Night (SBN). We have the privilege of being treated to the Billy Joel/Elton John concert at Wrigley Field. Lonnie, you don't know how much this is appreciated. Seriously, I wish there was a term bigger than Thank You. You have been such a great support to our family at all of our darkest times and for that there is no way to express gratitude to a sufficient level. Please know that when we say our prayers each night, you and your family are always at the top of our list. Your continued generosity is overwhelming.
Keep praying and we'll keep fighting.
The port placement is tomorrow at 9 a.m. We have to be there at 8 a.m. Again, please pray for easy port placement for the surgeon and guidance for his hands as he does the procedure. And sterile technique. And no junior mints falling in the opening as the surgeon works. (If you know what that reference is, leave a note and we will play Movie/TV trivia together sometime!)
So, tonight is Sanity Break Night (SBN). We have the privilege of being treated to the Billy Joel/Elton John concert at Wrigley Field. Lonnie, you don't know how much this is appreciated. Seriously, I wish there was a term bigger than Thank You. You have been such a great support to our family at all of our darkest times and for that there is no way to express gratitude to a sufficient level. Please know that when we say our prayers each night, you and your family are always at the top of our list. Your continued generosity is overwhelming.
Keep praying and we'll keep fighting.
Wednesday, July 15, 2009
The Post about Poo -- and I don't mean David
So many people are asking Johnny what made him go to the doctor in the first place. I thought I would fill in the blanks for everyone here and hopefully it will encourage ANYONE having a medical issue to make that appointment and see the doctor.
***** ALERT: There are multiple references to Johnny's poo in the following post. If poo-talk bothers you in any way, I probably wouldn't keep reading.
We can't remember exactly when it was, but probably six to eight weeks ago Johnny told me that he had some blood after poo-ing. Being the medical person that I am I asked, "Is it bright red blood?" To which he replied, "Yeah, it is pretty red." In my infinite wisdom I told him, "Its hemorhoids, don't push so hard when you poop." Done. End of my diagnostic expertise. Cancel my Wife of the Year nomination.
So, a couple weeks go by and he mentions nothing. We go on vacation to the U.P. -- or as we like to call it, God's Country. When we got home, he mentions it again only this time it was darker blood. Shoot, I have nothing in my diagnostic repertoire relating to dark red blood. Hmm.
For Johnny the Great Hunter to explain it, he said that it reminded him of a "gut shot" deer. The blood is a maroon red, not bright arterial blood, but darker. And not just on the T.P., also in the bowl. That bugged me just a little, but I was seriously not that concerned yet.
He asked me to make a doctor's appointment on Monday after vacation. Since I was no longer up for Wife of the Year, I forgot. Evidently on Wednesday he noticed more blood and called me at work. "Did you call the doctor for me yet."
Me: "No, sorry I forgot."
Johnny: "Well, will you."
Ok, so now I'm just mildly concerned because seriously, what man wants their wife to make them a doctor's appointment.
I called Dr. Al-Fadhl's office to make an appointment at 11 o'clock on Wednesday, July 1st. Johnny had never seen Dr. Al-Fadhl, he was just changing doctor's and planning on getting him in for a complete physical. I expected the first visit to "establish care" to take a couple weeks to get scheduled. This is where I credit Dr. Al-Fadhl's office with catching this as early as we did: The girl scheduling his appointment asked, "Is he currently having any problems that he needs to be seen for?" To which I replied, "Well, he has noticed blood in his stool several times and wants to be seen for that." She put me on hold for a minute and came back to the phone and said, "Can he be here at 3 o'clock?" Whoa. "Um, yeah, I think so. I'll call him to find out. He will be there unless I call you back."
I called Johnny at work. "Can you be there at 3?"
Johnny: "Wow, that was fast."
So, Johnny keeps his appointment and had a thorough exam (and I do mean thorough!) from Dr. Al-Fadhl -- on their first date, or appointment rather.
They talked about family history and previous health issues. Ginger's mom (Grandma Freund) had colon cancer so it was in our minds. Johnny has never had any health issues AT ALL, but the doctor thought he should go ahead with a colonoscopy. Always good for a baseline anyway, so it certainly wouldn't hurt.
On Friday after the colonoscopy and CT, Dr. Al-Fadhl himself called to speak with Johnny. He had been receiving the reports and wanted to see how Johnny was doing. This is a doctor that has only seen Johnny one time in his whole life, and already he is calling to follow up. He actually told Johnny that if he needed to talk, he could see him in the office or they could meet for coffee somewhere to talk. Wow. Now that is a doctor, if you ask me.
You know from the previous posts where the story goes from here. And tomorrow is the PET scan at 0930. For some reason, I am really nervous about it. Probably because I expected nothing more to come from the CT and WHAMMO! I won't make that mistake again, I think I will always dread tests from this point forward.
So, here comes the public service announcement ---
***** ALERT: There are multiple references to Johnny's poo in the following post. If poo-talk bothers you in any way, I probably wouldn't keep reading.
We can't remember exactly when it was, but probably six to eight weeks ago Johnny told me that he had some blood after poo-ing. Being the medical person that I am I asked, "Is it bright red blood?" To which he replied, "Yeah, it is pretty red." In my infinite wisdom I told him, "Its hemorhoids, don't push so hard when you poop." Done. End of my diagnostic expertise. Cancel my Wife of the Year nomination.
So, a couple weeks go by and he mentions nothing. We go on vacation to the U.P. -- or as we like to call it, God's Country. When we got home, he mentions it again only this time it was darker blood. Shoot, I have nothing in my diagnostic repertoire relating to dark red blood. Hmm.
For Johnny the Great Hunter to explain it, he said that it reminded him of a "gut shot" deer. The blood is a maroon red, not bright arterial blood, but darker. And not just on the T.P., also in the bowl. That bugged me just a little, but I was seriously not that concerned yet.
He asked me to make a doctor's appointment on Monday after vacation. Since I was no longer up for Wife of the Year, I forgot. Evidently on Wednesday he noticed more blood and called me at work. "Did you call the doctor for me yet."
Me: "No, sorry I forgot."
Johnny: "Well, will you."
Ok, so now I'm just mildly concerned because seriously, what man wants their wife to make them a doctor's appointment.
I called Dr. Al-Fadhl's office to make an appointment at 11 o'clock on Wednesday, July 1st. Johnny had never seen Dr. Al-Fadhl, he was just changing doctor's and planning on getting him in for a complete physical. I expected the first visit to "establish care" to take a couple weeks to get scheduled. This is where I credit Dr. Al-Fadhl's office with catching this as early as we did: The girl scheduling his appointment asked, "Is he currently having any problems that he needs to be seen for?" To which I replied, "Well, he has noticed blood in his stool several times and wants to be seen for that." She put me on hold for a minute and came back to the phone and said, "Can he be here at 3 o'clock?" Whoa. "Um, yeah, I think so. I'll call him to find out. He will be there unless I call you back."
I called Johnny at work. "Can you be there at 3?"
Johnny: "Wow, that was fast."
So, Johnny keeps his appointment and had a thorough exam (and I do mean thorough!) from Dr. Al-Fadhl -- on their first date, or appointment rather.
They talked about family history and previous health issues. Ginger's mom (Grandma Freund) had colon cancer so it was in our minds. Johnny has never had any health issues AT ALL, but the doctor thought he should go ahead with a colonoscopy. Always good for a baseline anyway, so it certainly wouldn't hurt.
On Friday after the colonoscopy and CT, Dr. Al-Fadhl himself called to speak with Johnny. He had been receiving the reports and wanted to see how Johnny was doing. This is a doctor that has only seen Johnny one time in his whole life, and already he is calling to follow up. He actually told Johnny that if he needed to talk, he could see him in the office or they could meet for coffee somewhere to talk. Wow. Now that is a doctor, if you ask me.
You know from the previous posts where the story goes from here. And tomorrow is the PET scan at 0930. For some reason, I am really nervous about it. Probably because I expected nothing more to come from the CT and WHAMMO! I won't make that mistake again, I think I will always dread tests from this point forward.
So, here comes the public service announcement ---
- If it is time for you to see the doctor then GO.
- If you haven't had a physical for umpteen years then GO.
Don't make me get the Rear Admiral on you!
Tuesday, July 14, 2009
Back to Work
I had to go to work today. That was so much harder to do than you might think. I haven't actually worked since last Tuesday, you know, when life was great and there was no such thing as cancer or metastasis or surgery or MRI or PET scans or oncologists . . . or rectal probing.
We are really trying to find humor where ever we can with this trip. Sometimes it is pretty easy, sometimes not so much.
We were sitting in the kitchen talking with the boys and Johnny was saying how important it will be for them to get checked early and that he is going to make sure his brothers all get checked soon. Quinn said, "Geez, dad, your what I'd call the Rear Admiral." Rear Admiral Toad, I like that.
Yesterday was our consultation with the surgeon, Dr. Delle Donne. I can see where some people might think he is cocky, but I think his confidence comes across that way. After he walked in, he asked us what we knew, because there was no point in going over what we already had been told. I think he wanted to hear it from us so that he could determine our aptitude for medical jargon. He didn't know who he was messing with, did he?
He confirmed what we said and then told us what he thought would happen. In his opinion, chemotherapy needs to start before we even consider removing the tumor from the colon. Theoretically, the chemo will shrink the lesions in the liver and the tumor in the colon, thus making surgery easier . . . I may have mentioned all this before. . . bear with me.
We were presented with our "Best Case"/"Worst Case" scenarios:
Best Case: The chemo starts and in 3-6 months Johnny gets another scan to see how the liver and colon are doing. Hopefully it is a matter of possibly removing a few lesions from the liver and the colon tumor. Johnny will have a stoma (temporary colonostomy) until the site of the surgery heals. After a few months the stoma will be reversed and all is well.
Worst Case: Chemo doesn't do much, colon tumor is removed so that there aren't any issues with obstruction along the way. Johnny would receive a permanent colostomy in this case and we continue with chemo/additional treatment until we have exhausted our resources.
OBVIOUSLY, I am planning on the Best Case scenario. Obviously.
The surgeon told Johnny that it is going to suck for a year. Really, that is a direct quote:
But, he told Johnny that guys "like him" do great. Evidently if you are butt-smokin' hot, this isn't too big of an issue. Who knew his hot body and great looks would make chemo easier. Hey, I'm all for it!
He told Johnny to stay "thin" (relative term, as he had just removed the appendix of a 400-pound man) and to start training like this was the Olympics. Minimum exercise requirement is 1 mile a day and he should do more on the days that he can. This is where it will be great to involve the boys. We have YMCA memberships that have been slightly neglected since spring, so we will dust off our cards and head back.
He asked if we had children and their ages. His rule of thumb for screening children is parent's age at diagnosis minus 20 years. Lets do the math together: 43 (on the frickin' dot) - 20 = 23. Then he said, "I would actually recommend getting a baseline colonoscopy for them at 18." Hehehe . . . I couldn't wait to tell the Rear Admiral's oldest son that. We figured that would be good because at 18 both of the boys will still be in school and on our insurance. They will still be under our control (isn't that what parents of 18-year-olds like to think? that they are still the ones in control?). You can just imagine how excited the boys were to get the news! Quinn has a count down started . . . only 4 1/2 years to go. Jake is hoping that the Star Trek medical scanners are up and running by the time he needs one and they only have to pass the probe over him rather than in him when the time comes. Who knows, right?
Then, very matter-of-factly the dr. said, "Well, your definitely going to need a port, so we might as well put that in on Friday." (A port is a semi-permanent access to the vein that will be inserted under the skin up by the clavicle. This will allow multiple accesses without multiple needle pokes.) Well, ok then.
We had the MRI yesterday and will know the results when we see Dr. Ansari. We had a couple changes to our schedule based on insurance pre-certifications so the PET scan is on Thursday, port placement is on Friday and our visit to Dr. Ansari is on Monday. We get today and tomorrow off for good behavior.
I have had a lot of people ask me what made Johnny go to the doctor in the first place. I'll write another post tomorrow to fill in that information. I'll end this post now because I'm sure I have put everyone to sleep.
But, before I sign off I'd like to thank the 10-year-old All-Star team from Howard Township Baseball (WOOT!). You have now idea how much stopping by meant to Coach Brawley. Also, it seems we were visited by the Lawn Mowing Elf. Thanks a million . . . I feared for our yard and you rescued it! To Lonnie, I wish there was a bigger word than "thanks" but I haven't found it yet . . . And to everyone who stopped by with wine, food, wine, health supplements, and wine, I'd like to say (hiccup!) THANKS! Please keep praying, calling, stopping by to say hi, leaving comments, and smiling. All these things are so important in our fight.
We are really trying to find humor where ever we can with this trip. Sometimes it is pretty easy, sometimes not so much.
We were sitting in the kitchen talking with the boys and Johnny was saying how important it will be for them to get checked early and that he is going to make sure his brothers all get checked soon. Quinn said, "Geez, dad, your what I'd call the Rear Admiral." Rear Admiral Toad, I like that.
Yesterday was our consultation with the surgeon, Dr. Delle Donne. I can see where some people might think he is cocky, but I think his confidence comes across that way. After he walked in, he asked us what we knew, because there was no point in going over what we already had been told. I think he wanted to hear it from us so that he could determine our aptitude for medical jargon. He didn't know who he was messing with, did he?
He confirmed what we said and then told us what he thought would happen. In his opinion, chemotherapy needs to start before we even consider removing the tumor from the colon. Theoretically, the chemo will shrink the lesions in the liver and the tumor in the colon, thus making surgery easier . . . I may have mentioned all this before. . . bear with me.
We were presented with our "Best Case"/"Worst Case" scenarios:
Best Case: The chemo starts and in 3-6 months Johnny gets another scan to see how the liver and colon are doing. Hopefully it is a matter of possibly removing a few lesions from the liver and the colon tumor. Johnny will have a stoma (temporary colonostomy) until the site of the surgery heals. After a few months the stoma will be reversed and all is well.
Worst Case: Chemo doesn't do much, colon tumor is removed so that there aren't any issues with obstruction along the way. Johnny would receive a permanent colostomy in this case and we continue with chemo/additional treatment until we have exhausted our resources.
OBVIOUSLY, I am planning on the Best Case scenario. Obviously.
The surgeon told Johnny that it is going to suck for a year. Really, that is a direct quote:
"It is going to suck for a year." -- Dr. Delle Donne.
But, he told Johnny that guys "like him" do great. Evidently if you are butt-smokin' hot, this isn't too big of an issue. Who knew his hot body and great looks would make chemo easier. Hey, I'm all for it!
He told Johnny to stay "thin" (relative term, as he had just removed the appendix of a 400-pound man) and to start training like this was the Olympics. Minimum exercise requirement is 1 mile a day and he should do more on the days that he can. This is where it will be great to involve the boys. We have YMCA memberships that have been slightly neglected since spring, so we will dust off our cards and head back.
He asked if we had children and their ages. His rule of thumb for screening children is parent's age at diagnosis minus 20 years. Lets do the math together: 43 (on the frickin' dot) - 20 = 23. Then he said, "I would actually recommend getting a baseline colonoscopy for them at 18." Hehehe . . . I couldn't wait to tell the Rear Admiral's oldest son that. We figured that would be good because at 18 both of the boys will still be in school and on our insurance. They will still be under our control (isn't that what parents of 18-year-olds like to think? that they are still the ones in control?). You can just imagine how excited the boys were to get the news! Quinn has a count down started . . . only 4 1/2 years to go. Jake is hoping that the Star Trek medical scanners are up and running by the time he needs one and they only have to pass the probe over him rather than in him when the time comes. Who knows, right?
Then, very matter-of-factly the dr. said, "Well, your definitely going to need a port, so we might as well put that in on Friday." (A port is a semi-permanent access to the vein that will be inserted under the skin up by the clavicle. This will allow multiple accesses without multiple needle pokes.) Well, ok then.
We had the MRI yesterday and will know the results when we see Dr. Ansari. We had a couple changes to our schedule based on insurance pre-certifications so the PET scan is on Thursday, port placement is on Friday and our visit to Dr. Ansari is on Monday. We get today and tomorrow off for good behavior.
I have had a lot of people ask me what made Johnny go to the doctor in the first place. I'll write another post tomorrow to fill in that information. I'll end this post now because I'm sure I have put everyone to sleep.
But, before I sign off I'd like to thank the 10-year-old All-Star team from Howard Township Baseball (WOOT!). You have now idea how much stopping by meant to Coach Brawley. Also, it seems we were visited by the Lawn Mowing Elf. Thanks a million . . . I feared for our yard and you rescued it! To Lonnie, I wish there was a bigger word than "thanks" but I haven't found it yet . . . And to everyone who stopped by with wine, food, wine, health supplements, and wine, I'd like to say (hiccup!) THANKS! Please keep praying, calling, stopping by to say hi, leaving comments, and smiling. All these things are so important in our fight.
Saturday, July 11, 2009
The Power is Back On
The joke at our house is that whenever Johnny goes away (without the rest of us) something "catastrophic" happens.
There was the time that he went caribou hunting for 10 days and a tornado swept through town, cancelling school for a week and taking our power and well with it. Quinn was 2 1/2 and Jakey was just a year. Or the time he went on another hunting/fishing trip and an ice storm tore down the power lines and left us in a cold, dark house for 3 days.
Where we live, the power goes out if a breeze blows, so we have adjusted to it. My mom and dad, however, wouldn't stand for another one of "Johnny's trips" with their daughter and grandchildren unprotected. So, after the tornado, my parent's bought us a generator for Christmas. Wait, now that I think about it -- I was fine unprotected . . . it was only after we gave them the grandchildren that suddenly the need for protection cropped up. Funny how grandkids will do that, no?
We don't always start the generator right away if the power goes out. It may come back on in a minute, an hour, a couple hours. . . or 5 days. We never know. (Mad props to the Boys of AEP! We love you guys . . . especially you, Pooh!) The great thing about it is we know that it is there and can turn it on when we need it . . . like after a terrible storm.
If you lose power a lot you'll know what I'm talking about here: When our power goes out, we just kinda gather together in the living room with the emergency stash of batteries, candles, flashlights and get cozy together. Sometimes we read, sometimes we sleep, talk, play games, whatever. But we are all together in one room, because it is what seems right and comfortable.
Then, the power comes back on. It is like waking up. Slowly and deliberately we go around and check on everything. Make sure everything is working, power restored. If the generator is on, we turn it off and switch back to main power. (SIDE NOTE: Our generator is hooked in through our fuse box in the garage with an emergency switch thingy that won't let the generator power bleed backwards to the main power line to injure the wonderful AEP boys while they work. It's pretty cool, and thanks to Alan, it works.) I don't know if it is just us, but it is a slow pace and not frantic at all . . . eventualy we get back up to our normal pace and go on the way we do until there is another power outage.
The last few days have been a tornado, a terrible storm, a catastrophe all rolled into one. Another one of "Johnny's trips". Although he is not alone on this trip, we are going on it together and the boys are coming, too. Our power went out for a little bit, but fortunately my mom and dad and sisters and brothers-in-law and other friends and family were here to get the generator running for us. We were not unprotected, not even for a minute. We spent a lot of time in the living room, together, waiting for the power to come back on. And like always, it did.
Last night, Quinn went to stay the night with Zack. Johnny and the brothers went carp shooting. Jake had the computer and X-Box to himself, so he played video games until his eyeballs bled. I fell asleep watching a movie, and stayed asleep.
Picking up a normal pace.
I know there are other storms on the horizon. They are going to come. We are going to need our emergency power again, and I'll turn on the generator when needed. I don't plan on doing any part of this storm without proper power and support, believe me.
But for today, we have switched back to main power. And that feels good.
There was the time that he went caribou hunting for 10 days and a tornado swept through town, cancelling school for a week and taking our power and well with it. Quinn was 2 1/2 and Jakey was just a year. Or the time he went on another hunting/fishing trip and an ice storm tore down the power lines and left us in a cold, dark house for 3 days.
Where we live, the power goes out if a breeze blows, so we have adjusted to it. My mom and dad, however, wouldn't stand for another one of "Johnny's trips" with their daughter and grandchildren unprotected. So, after the tornado, my parent's bought us a generator for Christmas. Wait, now that I think about it -- I was fine unprotected . . . it was only after we gave them the grandchildren that suddenly the need for protection cropped up. Funny how grandkids will do that, no?
We don't always start the generator right away if the power goes out. It may come back on in a minute, an hour, a couple hours. . . or 5 days. We never know. (Mad props to the Boys of AEP! We love you guys . . . especially you, Pooh!) The great thing about it is we know that it is there and can turn it on when we need it . . . like after a terrible storm.
If you lose power a lot you'll know what I'm talking about here: When our power goes out, we just kinda gather together in the living room with the emergency stash of batteries, candles, flashlights and get cozy together. Sometimes we read, sometimes we sleep, talk, play games, whatever. But we are all together in one room, because it is what seems right and comfortable.
Then, the power comes back on. It is like waking up. Slowly and deliberately we go around and check on everything. Make sure everything is working, power restored. If the generator is on, we turn it off and switch back to main power. (SIDE NOTE: Our generator is hooked in through our fuse box in the garage with an emergency switch thingy that won't let the generator power bleed backwards to the main power line to injure the wonderful AEP boys while they work. It's pretty cool, and thanks to Alan, it works.) I don't know if it is just us, but it is a slow pace and not frantic at all . . . eventualy we get back up to our normal pace and go on the way we do until there is another power outage.
The last few days have been a tornado, a terrible storm, a catastrophe all rolled into one. Another one of "Johnny's trips". Although he is not alone on this trip, we are going on it together and the boys are coming, too. Our power went out for a little bit, but fortunately my mom and dad and sisters and brothers-in-law and other friends and family were here to get the generator running for us. We were not unprotected, not even for a minute. We spent a lot of time in the living room, together, waiting for the power to come back on. And like always, it did.
Last night, Quinn went to stay the night with Zack. Johnny and the brothers went carp shooting. Jake had the computer and X-Box to himself, so he played video games until his eyeballs bled. I fell asleep watching a movie, and stayed asleep.
Picking up a normal pace.
I know there are other storms on the horizon. They are going to come. We are going to need our emergency power again, and I'll turn on the generator when needed. I don't plan on doing any part of this storm without proper power and support, believe me.
But for today, we have switched back to main power. And that feels good.
Friday, July 10, 2009
Breathing
Two days in a row of crushing news deserves to be followed by some good news, right? I completely agree.
We had our first Oncology appointment today (lots of firsts this week!) at 8:00 a.m. Let me start by saying that Rafat Ansari, MD, is the most amazing man. He walked in the room, shook Johnny's hand saying, "You must be John." Then he looked at me and said, "And how are you, my dear?" From there he told us some things we needed to hear today.
First, it is a tumor in the sigmoid colon. Second, there are lymph nodes involved. Third, there are mutliple lesions in the liver.
Now for the good part: the largest lesion in the liver is only 35 millimeters. That is SMALL! Do you know how little 35 mm is? Go find a ruler and look. I'll wait . . . . . . . . . . See? That is so little! I can beat up that little spot!
We have some more testing to do on the liver before our plan is put into action. Dr. Ansari wants to know exactly how many lesions we are talking about (the CT report only said "multiple" -- what is multiple? 3? 5? 7? 42?) so Johnny will have a PET scan and an MRI on Monday and Tuesday to clear up that question.
We will still meet with the surgeon on Monday as well. Dr. Ansari would actually like to start chemo before having the tumor from the colon removed. He feels that this will start to shrink/eliminate some of the lesions in the liver and start to reduce the size of the colon tumor as well. We will still need surgery, obviously, so we will meet him and he and Dr. Ansari can put their heads together for the best plan.
We see Dr. Ansari again next Thursday and give our plan some wheels. I'll feel better when there is some chemo traveling to that liver and killing the evil little critters that are wreaking so much havoc in there!
So, we are breathing today. It has been several hours since I have cried, and I feel like I can move on to the next step. We know that the tough times are far from being over, but today is good and we are both empowered from today's information to take another step.
Johnny just said to someone on the phone, "Today is a peak; I'm staying here as long as I can. I know the valleys are still coming, but I'm not in a hurry to get there."
We had our first Oncology appointment today (lots of firsts this week!) at 8:00 a.m. Let me start by saying that Rafat Ansari, MD, is the most amazing man. He walked in the room, shook Johnny's hand saying, "You must be John." Then he looked at me and said, "And how are you, my dear?" From there he told us some things we needed to hear today.
First, it is a tumor in the sigmoid colon. Second, there are lymph nodes involved. Third, there are mutliple lesions in the liver.
Now for the good part: the largest lesion in the liver is only 35 millimeters. That is SMALL! Do you know how little 35 mm is? Go find a ruler and look. I'll wait . . . . . . . . . . See? That is so little! I can beat up that little spot!
We have some more testing to do on the liver before our plan is put into action. Dr. Ansari wants to know exactly how many lesions we are talking about (the CT report only said "multiple" -- what is multiple? 3? 5? 7? 42?) so Johnny will have a PET scan and an MRI on Monday and Tuesday to clear up that question.
We will still meet with the surgeon on Monday as well. Dr. Ansari would actually like to start chemo before having the tumor from the colon removed. He feels that this will start to shrink/eliminate some of the lesions in the liver and start to reduce the size of the colon tumor as well. We will still need surgery, obviously, so we will meet him and he and Dr. Ansari can put their heads together for the best plan.
We see Dr. Ansari again next Thursday and give our plan some wheels. I'll feel better when there is some chemo traveling to that liver and killing the evil little critters that are wreaking so much havoc in there!
So, we are breathing today. It has been several hours since I have cried, and I feel like I can move on to the next step. We know that the tough times are far from being over, but today is good and we are both empowered from today's information to take another step.
Johnny just said to someone on the phone, "Today is a peak; I'm staying here as long as I can. I know the valleys are still coming, but I'm not in a hurry to get there."
Thursday, July 9, 2009
The Day I Never Expected
dear friends,
This is the day that I never expected, never wanted and never prepared for, but it is here. Johnny's 43rd birthday. Colon cancer diagnosed yesterday. CT today. Liver metastasis. I can't comprehend it, yet I have to.
I can tell you that of the four of us, Johnny is the strongest followed closely by Quinn. Quinn just wants to know that we can beat this and is confident that we will. "What do we have to do?" We. All four of us together. WE can do it.
Jake is a close third place to my fourth. He thinks the "C" word means the "D" word. I can't argue the point right now. He got out of bed last night at about 1:00 a.m. and turned on the bathroom light. I got up to see who was up. Jake and I spent the next hour watching M*A*S*H re-runs and trying to get sleepy. Didn't work for either of us. I found him this morning with his old friend "Beary", a stuffed bear from when he was 5 years old, snuggly wrapped in his arms. I kissed him goodbye and told him that daddy and I were headed to the hospital for a CT scan. I saw Beary and said, "Sometimes it is nice to have a visit from an old friend, isn't it?"
I am a complete and utter mess. Johnny is the love of my life. I have loved him every single day since June 19th, 1984, when he kissed me for the first time. I never looked back. He is THE ONE for me. No doubt. I am THE ONE for him. I still get goosebumps when he kisses me. I still can't believe that he picked me for the rest of his life. And I am his.
OK, so here is where we stand: Colonoscopy on July 8th showed a 3-inch section of sigmoid colon has a tumor, probably malignant, that needs to come out. Dr. O'Dea is confident that Johnny will not need a colostomy. Scheduled a CT for today, July 9th. CT at 0830 this morning. In the mean time, Dr. Delle Donne's office (pronounced del-a-donna) calls to schedule surgery consult for Monday, July 13th, at 0830. Dr. O'Dea calls at 4:30 p.m. to tell us the results of today's CT. Not good. Multiple lesions found in the liver. Holy shit. Johnny is a little overwhelmed, Pam is inconsolable. What do we tell the kids?
We are being honest with the kids, with an all-positive spin. It is in the liver, true, but Johnny is a healthy young guy with no other medical issues to deal with. I tell the kids that we are going to KICK CANCERS ASS. They are on board with this.
My mom and dad, sisters, brothers-in-law, and Johnny's whole family are completely overwhelmed with this news. We all had a good cry together and then pulled ourselves back together. John and Ginger are heading home from the cabin on Sunday. Ginger will go with us to the surgery consult on Monday. I just may need her there. . . dontcha think? On Molly's blog, she refers to John and Ginger as FIL and MIL (or crazy MIL) for Father-in-law and Mother-in-law. I am thankful for each member of this crazy family.
Also, thank God for friends. After the horrible news from this afternoon, Shelly and Laurie (my Diamond Girls) show up at the end of my driveway and call my cell phone. "We are at the end of your driveway, can we come in?" Of course. Just what I needed, too. After two bottles of wine (consumed by me, Angie, and well, mostly me) I have gone two full hours without crying and feel stronger. After everyone leaves, the boys (Quinner and Jakey) and I are left by the fire on the deck. I ask them what they are thinking. Quinn has a tummy ache. Jake says we can do it. I agree with them both.
Tomorrow I seek Hope from the oncologist. He better give it to me, or I will wrestle him to the floor.
Right now, just pray. For my Johnny.
This is the day that I never expected, never wanted and never prepared for, but it is here. Johnny's 43rd birthday. Colon cancer diagnosed yesterday. CT today. Liver metastasis. I can't comprehend it, yet I have to.
I can tell you that of the four of us, Johnny is the strongest followed closely by Quinn. Quinn just wants to know that we can beat this and is confident that we will. "What do we have to do?" We. All four of us together. WE can do it.
Jake is a close third place to my fourth. He thinks the "C" word means the "D" word. I can't argue the point right now. He got out of bed last night at about 1:00 a.m. and turned on the bathroom light. I got up to see who was up. Jake and I spent the next hour watching M*A*S*H re-runs and trying to get sleepy. Didn't work for either of us. I found him this morning with his old friend "Beary", a stuffed bear from when he was 5 years old, snuggly wrapped in his arms. I kissed him goodbye and told him that daddy and I were headed to the hospital for a CT scan. I saw Beary and said, "Sometimes it is nice to have a visit from an old friend, isn't it?"
I am a complete and utter mess. Johnny is the love of my life. I have loved him every single day since June 19th, 1984, when he kissed me for the first time. I never looked back. He is THE ONE for me. No doubt. I am THE ONE for him. I still get goosebumps when he kisses me. I still can't believe that he picked me for the rest of his life. And I am his.
OK, so here is where we stand: Colonoscopy on July 8th showed a 3-inch section of sigmoid colon has a tumor, probably malignant, that needs to come out. Dr. O'Dea is confident that Johnny will not need a colostomy. Scheduled a CT for today, July 9th. CT at 0830 this morning. In the mean time, Dr. Delle Donne's office (pronounced del-a-donna) calls to schedule surgery consult for Monday, July 13th, at 0830. Dr. O'Dea calls at 4:30 p.m. to tell us the results of today's CT. Not good. Multiple lesions found in the liver. Holy shit. Johnny is a little overwhelmed, Pam is inconsolable. What do we tell the kids?
We are being honest with the kids, with an all-positive spin. It is in the liver, true, but Johnny is a healthy young guy with no other medical issues to deal with. I tell the kids that we are going to KICK CANCERS ASS. They are on board with this.
My mom and dad, sisters, brothers-in-law, and Johnny's whole family are completely overwhelmed with this news. We all had a good cry together and then pulled ourselves back together. John and Ginger are heading home from the cabin on Sunday. Ginger will go with us to the surgery consult on Monday. I just may need her there. . . dontcha think? On Molly's blog, she refers to John and Ginger as FIL and MIL (or crazy MIL) for Father-in-law and Mother-in-law. I am thankful for each member of this crazy family.
Also, thank God for friends. After the horrible news from this afternoon, Shelly and Laurie (my Diamond Girls) show up at the end of my driveway and call my cell phone. "We are at the end of your driveway, can we come in?" Of course. Just what I needed, too. After two bottles of wine (consumed by me, Angie, and well, mostly me) I have gone two full hours without crying and feel stronger. After everyone leaves, the boys (Quinner and Jakey) and I are left by the fire on the deck. I ask them what they are thinking. Quinn has a tummy ache. Jake says we can do it. I agree with them both.
Tomorrow I seek Hope from the oncologist. He better give it to me, or I will wrestle him to the floor.
Right now, just pray. For my Johnny.
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