Tuesday, January 29, 2008

I hope everyone is doing well. I know you guys love it when Christi does her posts, and I try to encourage her to do them often. I am feeling pretty good from chemo yesterday, maybe a little tired. I was not sure how much I told you about my pulmonary rehab, so I thought I might explain it a little. I go on Tues, Thur, and Friday every week. I have been 4 times now I think where I am actually working out. i have improved each time, and I am already over what Duke will require for the transplant. I am trying to get even better. Today I went and I rode a bike for 8 minutes, did the treadmill for 15 minutes at 2.7 miles per hour, did an arm machine for 8 minutes, did the row machine for 6 minutes, and of course did the warm up with the group. It is pretty funny, i am the youngest in there of course, by 20 some years. The warm up is not hard but it is good since I have never really stretched before. After the warm up, I have to get on oxygen to so the exercises on level 4. However, my oxygen saturation levels have been good. I start lifting next week and I have already gained 4 pounds which is good as well. It is all the way in Charlotte which is a pain, but it beats having to be in Durham and going to Duke. I may have to do that later. I will have gone 13 times before I go to Duke for my evaluation, and I hope they will see this as positive.... I am also hoping they will let me stay in Charlotte while I am waiting on the list.... We will see.

I really believe this chemo is helping. I was really on a downward tick before and I feel a lot better. I believe if this chemo had not kicked in, I was really in trouble. Good thing it did.... Bought some more time. Thanks for all the prayers and thoughts. Still need them!

Monday, January 28, 2008

Hello everyone, Christi here. Just a little update, we are getting chemo today....we had a great weekend. FIG had their End of the Year Celebration this past weekend and it was a great time. At celebrations like this you are greatly reminded about how many wonderful people enter your life and support you when times are tough. I cannot express to everyone there a great thank you from me to the support and love that you all have for our family. So many people care about Bo and our fight that it is almost overwhelming to know that you all are there for us whenever we need you. I do have to say that going to FIG's celebration each year reminds me of how Bo and I started our journey together. (For those that do not know, I interviewed with FIG - Bo was the interviewer, I know HR nightmare, I didn't get the job at the time it took me 2 more years to get hired and I interviewed with Bill and Jo the next time.) But never for one second have I questioned the path and the choices I have made. The greatest thing that ever happened to me was not getting the job I wanted, but getting the life God laid out for me. Things happen for a reason just give it time and like Bill said enjoy the journey in life not just the year end celebration.

On another note everyone sure did looked wonderful! You all clean up real nice. As soon as I get pictures I will post some. I have to have people send some to me, because Bo wouldn't let me run home to get the camera I forgot. (We were 2 minutes away)

Also for those that do not know today is Bo's Birthday. I just reminded him a lunch that every day with me it like a birthday and he adamently agrees. So to you Bo

Happy Birthday Bo! We all Love you!

Christi and Addi

PS Happy Belated Birthday Niece Ryan, she turned 2 Saturday

PS Happy Birthday Clint - His birthday is today as well. Don't worry I woke him up singing a great song today. Love you little one!

PS Go and see 27 Dresses, I loved that movie

Wednesday, January 23, 2008

Finally, I have something to update about the lung transplant situation. Duke called me to schedule my 1 week evaluation. I go on February 18 for the entire week. This is the evaluation and test process. I was very disappointed to have to wait until the 18th, but at least I am in. I go back to Duke for chemo on the 28th, and I will talk to them again then. After the week of testing, the doctors will meet about my case. At that point, I guess I will go on the list if they deem it ok.

I am happy to get started, just wish it was sooner..... It is a roller coaster of emotions....

Oh - went to the dentist yesterday and got a good checkup. Just thought you would like to know.

Monday, January 21, 2008

I wanted to have a quick update for today.

I am feeling better and at work today. I did very little this weekend, just hung out with Addi and Christi. I am trying to gain some weight, so I am drinking some protein shakes and stuff. It has been a long time since I have tried to gain weight..... I am now at 155 pounds and that is what I weighed in high school. It is weird....

I am VERY frustrated with Duke as of now. I met with the transplant people on Jan 3, and I am still not knowing what is going on. I am trying to be politically correct and going through the proper channels, but the further it is out the worse I feel about it. I have been trying to email and to work some magic, but nothing so far. I go back up on the 28th of January for chemo, and if I have not heard by then then I am going to have to become "crazy" Bo.....

My KS family is coming out in early Feb so I am glad about that!

Friday, January 18, 2008

Hope everyone likes the pictures of my beautiful little girl. I wish Christi would put pictures of herself on as well, she is beautiful too.

I am at work today, so I do not have too much time. I am supposed to be at a meeting in FL today, but I decided not to go earlier in the week. Things are going better, that is for sure, although I am still not sleeping well. I also have a hive-like deal going on from the chemo, and while it is not to bad, just annoying.

I am going to pulmonary rehab today for my exercise. I went yesterday for testing and consultation. The people are really nice and are very interested in me. I am the youngest person there as far as I can tell by 25 years, but that has been really everywhere. I hope it goes well.

So, basically I still have lung cancer but am feeling better. :)

Thursday, January 17, 2008

I know I am very late on posting some pictures of Christmas...but here are a few of my favorites and one of Addi Painting today. We got a bunch of rain and a little snow, so we played indoors all day while Daddy went to work. Thank you everyone for all the prayers and support. We will type more later...
Love Christi and Addi

Tuesday, January 15, 2008

It has been a few days since my last post, and several things have happened. The first few days after chemo on the 8th, I was fine. I could not sleep hardly at all, but that was my big problem. On Friday morning, i went to have an x-ray because I thought I may have another collapsed lung. Dr. Thomas did the x-ray here, and he did not see anything. I went home on Friday afternoon and just felt really bad. We stayed home all weekend and I was like a zombie. I could only sleep 1-2 hours at a time. It was weird. All I did was watch football and play some with Addi. I worked from home on Monday and I went to the pulmonary specialist that afternoon.

-- Soapbox time: I had to go to the pulmonary specialist to get a referral to go to have a consultation with rehab.... What a waste of time! --

I saw Dr. Meade and he gave me the referral to go to rehab in Charlotte. I also asked him about oxygen, and he made me do a test called the 6 minute walk. When I did the test, he found that my blood-oxygen level went below the normal levels with exertion. Basically, he said I needed oxygen when I exercise and he wanted me to use it when I sleep. I had a service come over yesterday, and I now have oxygen. This is embarrassing for sure and makes me feel like I am moving down in health, but I still am hopeful this is temporary as the lung transplant will come to be.

Wednesday, January 09, 2008

Just a quick update. I did chemo yesterday and feel pretty good. I have not gotten sick yet or anything, so I think we will be good to go on this drug as well. I do feel like I am breathing better, but I am not sure if that is wishful thinking or really happening.

Thanks you for all of the notes you leave. It makes me feel really good that people are actually reading this. It is important for anyone that has a problem to be able to chat about it, and having you read it makes it better for me. Thanks!

Just a quick update, more later....

Monday, January 07, 2008

Headed to Duke tomorrow for Alimta but got some really good news today. The lung transplant doctor is willing to go the extra mile with me and do more test. While this does not mean I am accepted , it is very positive that he has decided if I can take the operation, I am in. I should test over the next 30 days, and then go on the list soon after that. I do not know what these test are, but I am hopeful I will do well. If I get a lung transplant, and if the cancer does not come back, here are my percentages:

Not reject after 1 year 90%
Not reject after 5 years 65%
Not reject after 10 years 30%

I will take those over my current odds!

Sunday, January 06, 2008

Not much to report this weekend. I stayed around the house, just having trouble breathing. Addi and Christi stayed close as well, so I spent a lot of time with Addi. We watched the games, and of course watched Kansas play on Saturday and Carolina play tonight. My Mom made us dinner tonight, so Christi got a break.... kind of, she still had to take care of me! :)

I go back to Duke on Tuesday for the new chemo and I really want to go. I am having trouble sleeping as I can not breathe really well. I hope it will push back the cancer some to help my stamina and breathing. The only problem is I can only take it 8 times every 3 weeks. A short term fix. Would love to play golf again, but walking up stairs is tough now.

When I started this blog I said I would alway tell the truth on what was happeing to me. Above is the way it is now. I am scared about what will happen next, and feel that without the transplant I might be on the way down. I am not depressed or mad, just trying to explain where I am. Looking forward to some good news soon.

Thursday, January 03, 2008

New update from Duke today. We went up and met with Dr. Palmer who is the director of the lung transplant area. He is very nice and SMART, and he is just a bit older than me. (He was the smart one in school!!!)

He talked to me about the procedure and he is going to look into my case. He is really going to consider it, and that is the best news I could have received. This is not a guarantee he will let me do this, but it is a first step. It was a good meeting....

Chris Flynn, Suzi's husband, asked me if he could have Addi's Cure be the charity that is listed at Suzi's funeral in lieu of flowers. I was honored. He said Suzi would have wanted it this way, and I believe him.... I will miss Suzi.

Wednesday, January 02, 2008

I promised an update for you from Duke today, and I wish I had better news. My scans did not go well. They show a growth of the cancer. Dr. Crawford has decided that we need to switch courses and try some new things. I am going to stop using tarceva. I will keep using avastin, but add another drug to it. It is called ????, I will let you know later..... I will have to go to Duke every 3 weeks for this treatment. It will take about 3 hours and will be done intravenously. It was not good news, but at the same time, it was unrealistic to think any medication would last forever. I am glad to know we are moving forward to another chapter....

I want to report some sad news as well. Many of you have read from time to time about my friend Suzi from back home. She lost her fight with lung cancer this morning at about 10:15 am. She had been fighting hard for 3 years.... I was very sad to hear this. Thanks to everyone who sent in money to Addi's Cure on her behalf. Please remember her family during this time. She has a 5 and 3 year old.

I will be meeting with the lung transplant doc tomorrow, so I hope I will have some different and better news.....

Tuesday, January 01, 2008

Happy New Year! I hope everyone had a good holiday. The Johnson Family had an interesting one....

I first wanted to say I go to Duke tomorrow for scans and then stay over for a January 3rd appointment with Dr. Palmer, the lung transplant guy. I will know a lot more on Jan 3rd and will report. I am worried about the scans, like always. This time I am for sure breathing different, and I have no idea what is going on. I will be glad to know, that way the docs hopefully can do something.... Dr. Palmer is the man that makes the decision about the transplant, so I hope I impress him.... Might wear a suit, just kidding.

We are going to present Duke Research with a check from Addi's Cure tomorrow as well. I am so proud of Addi's Cure and what it has become. It is all due to every ones help! We are going to donate $61,289.35 to lung cancer research. We also have over $98,000 in our interest bearing account for endowment. Everyone has done such a great job with this. We have decided to hold our first Addi's Cure event for 2008 on March 1 in Cornelius at the Peninsula Yacht Club. It will be with a Jimmy Buffett theme and should be a lot of fun..... Please make plans to come if you can....

Alright - holiday update. I was not able to go to Kansas because of my breathing. Christi and I were disappointed, but we did think it was best. I will have to get back there soon, I miss my Kansas family. Christi and Addi have a blast and Addi went sledding with her BFF forever Ryan. I added a picture of Addi (eyes closed of course!) and Ryan with Uncle Curtis at the top....