Wednesday, November 26, 2014
Wednesday, November 5, 2014
Well the second time around was a little worse. The pain from the shots user to numb my head and the pressure from screwing the halo on made me sick and light headed. After that little episode everythibg else went pretty smoothly. I honestly don't remember a whole lot since I slept for most of the procedure. The nurses and doctors were wonderful and even remembered me from the last visit. I had a new radiation oncologist because the last one moved to Alaska.
We got to the hospital around 630am and left that afternoon around 1. During the procedure they actually did two other spots that looked suspicious to them so they ended up giving me some steriods. We were hoping they wouldn't have to use them so we could start the trial faster but since there were three spots that got treated they had to give me some.
Removing the halo wasn't as bad as the first time but it still wasn't fun.
We are on our way home now for a couple of weeks before hopefully heading back to Maryland to see those doctors.
A special thanks goes out to Joey Keith for making a quick trip down there to be with us (mainly Kyle since yesterday was a little blurry for me). And also thank you to everyone for their thoughts and prayers. We will keep everyone up to date.
Sunday, November 2, 2014
We are at the airport now waiting to board our plane to Houston. I got the call on Friday saying the moved my Gamma Knife appointment up to Tuesday Nov 4th. Which is a good thing because it was scheduled for Nov 18th which would put off starting the trial that much longer. Thanks to Dr Koeneke for helping speed up the process and getting this ball rolling a little faster.
Right now we are scheduled to meet with all the doctors tomorrow. Tuesday is when I'll actually receive Gamma Knife and then we should get to come home on Wednesday.
Just a quick update for everyone.
Tuesday, October 21, 2014
We went to NIH a couple of weeks back in hopes of starting the trial. But after doing every type of scan they had we found out there is a new small spot of the brain which eliminated my from the trial as of right now. I am not sure why there is a spot because that is why we did full brain radiation and full brain radiation was suppose to kill any and all spots that may be presents in the brain. Obviously it missed one. So now we are waiting for MD to look at the scans and decide if doing Gamma Knife to that spot is an option. Or to tell us if this is a spot we should even be worried about. If I do end up doing radiation again I can go back to NIH two weeks after and hopefully start that trial or maybe even a different one that may end up being a better choice. MD just got the scans and reports last Wednesday so I am hoping I hear from them really soon. The longer it takes the longer I have to wait to start this trial. So let's jusy say I'm getting impatient.
The scans from NIH showed an increase in the size of the tumors in both the liver and lungs with a couple of new spots. There was a suspect spot on the iliac bone. The bladder still looks good along with my kidney and liver function. I am still in some sort of pain each day either in my rib area, my back, my chest, or all three but my energy level continues to increase. Sleeping at night is still questionable but I usually make it up from about 7 am to 10 am.
On the other hand I am going to be adding breast milk to my diet. There is a current study out there that states breast milk helps with liver and lungs cancer. Which I currently have spots in both of those spots. No, I won't be buying breast milk off the internet from a stranger or from the person standing on the corner. I don't need any extra "stuff" floating around in my body. I will definitely let y'all know how it is after I get a chance to try it.
I have been staying busy with work and racing. Racing season is just about over and meet season is just about to start. So I really don't have too much time to sit around and worry. Not saying I don't by any means but as long as I keep myself busy my brain isn't usually allowed to wonder to the "what ifs" that are constantly in the back of my mind.
Friday, September 26, 2014
|My support group running in the color run. Love each and every one of this ladies.|
Maryland was short lived for us. We got there late Monday night and spend all day at NIH on Tuesday. We met some incredible people and doctors there. Everyone was very pleasant and helpful. The only downfall was the waiting. My appointment was scheduled for 12:45, we didn't actually go back and see the fellow until 2:00. After she talked to us and did an exam she went into a meeting with the doctors to discuss my situation. The team didn't come back into our room until 4:30. At this point I thought we would be spending another night in MD because our flight was scheduled for 7:50 and the airport was at least an hour away and it was rush hour. We didn't leave the hospital until after 5 and had to go back to the hotel. We got a taxi from the hotel to the airport but he didn't get there until at least 5:45. But the good news is that we made the flight with about 20 extra minutes to spare.
|Kyle was pretty excited that we got to watch baseball on the flight home.|
The trial I will be participating in involves me just taking a pill called Cabozantinib every night. I have to to NIH every two weeks for the first 4 months for a check up. After 4 months if everything looks good then I will get to go back up there every month. I will get scans every 2 months up there. This pill has shown improvement in patients with spots in their lungs but they don't have a lot of information with patients that have spots in the liver. So hopefully I can be the one that it shows improvement in both the liver and lungs.
Once again the doctors had to inform me that my case is very rare. So I am hoping I can help them learn more about it and they will know how to treat people in the future that may have this same rare form of cancer.
I am excited to get started. I was relieved I didn't have to spend a long period of time up there and that I can do this all at home. I will just become more of a frequent flyer and will get to know Maryland like we did Houston. NIH will help with all travel arrangements and they were actually going to see if I qualified to stay in the Children's Hotel while I was there but they thought the age cut off was 26.
Right now we are planning on going back the week of Oct 6 to get scans and then see the team on Oct 7 and will get started after that.
Thank you everyone for the thoughts a prayers. My family and I really appreciate it.
|National Gymnatics Day was Sept 20th so I had to do my yearly handstand. If only took about 10 tries to actually get a picture with me all the way up in a handstand|
Monday, September 22, 2014
Here in just a few hours Kyle and I will be on a plane to Maryland. We will be meeting the doctors tomorrow at NIH to learn about a trial they have for me. I'm excited to go but nervous because I don't know what to expect. I don't know how long I'll have to be away from home so that part is kind of stressing me out. I like to have a plan but right now we are just going with the flow.
As soon as we learn more I will update everyone.
Thursday, September 4, 2014
I don't want to do chemo again because I feel like its just breaking own my body and making it really hard for it to fight off anything.
We are currently looking for trials at NIT in Maryland. A wonderful lady named Aricca has success finding herself a trial so I am going to hopefully follow in her foot steps.
The last couple of weeks have been really hard. I have no energy, my blood pressure is extremely low so every time I stand or do any type of movement I get light headed and short of breath. So I have had to stay close to the ground so if I do pass out I don't have very far to fall. Things are getting better but I am ready to be back to some sort of normal state. I just want to not be tired and have the energy to clean my house. I have been at work but I haven't been able to be the best coach I can be because I have to sit a lot. I haven't been able to be the best gym owner either because I can't spend the time I need to to make sure everything runs smoothly. I haven't been able to make it through a weekend of racing without spending a full day in the motor home sleeping. My family does so much to get my race car to the track and I haven't even been able to race. I know I won't feel normal as long as I have this disease inside me but I just want the energy to do my everyday task. And not let anyone down because I can't do what I need to get done.
So right now we are just going day to day. I don't think I am allowing myself to believe we are running out of options. Every time I have done chemo it has worked, even if it was for just a very short time, it should it was doing its job. And now I have nothing to show for the 4 rounds of chemo I went through this time.
Hopefully we will hear back from NIT with an option. And we can get started on that ASAP so I can get back to "normal" whatever that is.
Wednesday, August 6, 2014
We finally got results from Foundation One gene testing. The tumor came back with 4 different mutations, which is good because we have a few other options when or if chemo stops working. The first mutation they found has a pill they have used to help fight it and there is also a clinical trial going on that focuses on that mutation. The second one has just a clinical trial going on. The other two don't have anything right now but that doesn't mean there won't be any drugs or trials for those mutations.
I finished full brain radiation in July and just did a MRI today. I will see Dr. Bell on Tuesday next week with the results. With this also, I had very few side effects other than my hair falling out.
|JR let me make a couple of passes in Batman. Almost hit 200mph!|
|Kyle and I had to race at the Topeka division race. It was a good race but I was slightly better than him this time!|
|I finally got a win this last weekend.|
Wednesday, June 25, 2014
I will start another round of chemo on Monday June 30th. This round will consist of three different drugs, which two of them I have already done. I only have to do it one day a week every two weeks. Which is way better than having to sit in a hospital for four straight days. We will do three rounds and then repeat scans to see if its working. If it is showing improvement we will probably do three more rounds after that.
This past weekend we traveled to Indy for the Jegs US Open. We were suppose to race there Friday, Sat and Sunday but since the car count was low and it looked like rain on Sunday they moved Sunday's race to Sat. So we got two races in and a golf cart race before we loaded up and hit the road to St Louis. They were having the Super Chevy race so we couldn't just drive by a race track that was racing without stopping.
Indy was a little rough on me overall. I was struggling and not driving well at all. Other than in the golf cart race. JR, Larry and myself all entered our golf cart into the race. It was done on an 18.99 index and I will say our cart and drivers had it figured out. I made it down to four carts before turning it red. Jacks had a blast racing with us and he even helped me drive a couple of rounds.
We got to St Louis about 2 am on Sunday to sleep outside the gates near East St Louis. I was a little scared for my life that night. We all got one time trial in super pro and the quick race and there were no buy backs. I was 1 red second round in super pro and made it to the finals in the super quick before missing the tree. I haven't been to St Louis in over a year and it is probably one of my favorite track to race at. The racers from there have been nothing but supportive throughout this whole process and it was finally good to see all of them in person. I really appreciate each and every one of the racers out there. They know how to make a person feel good even during the most difficult time. I was able to forget everything and just enjoy my time at the race track with my family and friends.
|The awesome aunt I am let Jacks dry his bike with the air nozzle after a rain delay|
|Then I watched him play in a mud/oil/transmission fluid puddle with the air nozzle. And this was the aftermath. Lets just say he got a shower outside in the hose.|
|He was super excited for the golf cart race.|
|Its not a win but it felt great to even make it to the final. I just take this runner up as a sign that I will have plenty more races in my future to win.|
Wednesday, June 11, 2014
I just finished my first round of full brain radiation. I saw Dr Bell yesterday to go over the results from Houston. I didn't think we would end up starting treatment the day after I saw the doctor but I was fine with it. I will do 10 treatments (1 each day for 10 days). Each treatment will take maybe 20 mins total. Yesterday they made a mask that I will wear during each treatment. The mask was molded to fit my face exactly so I will get to take it home with me when I am done with treatment.
This process was completely painless and easy. A lot different than Gamma Knife. Let's just hope it works like Gamma Knife did. The doctors were really nice and worked with my schedule so I didn't have to miss work. They also let me have next Friday off so I can go to Indy to race.
Radiation will make me lose the hair I have worked really hard to grow. It will also cause fatigue. I have no restrictions while I'm doing radiation, so that makes me feel a little better about it. They told me to just listen to my body and take it easy when I start getting tired.
Once I'm done with treatment I will start chemo again. Which I am not looking forward to but we will do what we got to do.
Monday, June 2, 2014
Well we didn't get the results we were hoping for. The MRI showed three new, but very small spots on the brain (that weren't on the scans I had done at home a month ago) And since there are multiple spots showing up they feel like full brain radiation would be best. On a positive note, the previous spots that were Gamma Knifed are still gone. So we know that I respond well to radiation. I was just hoping to not have to use full brain this quick since I can only really do it one time. The nurse was very optimistic about doing full brain radiation. She felt I would handle it well and she told us she had seen scans that were 10 times worse than mine. So that made me feel better.
The CT scan showed the spots in the liver and lungs have grown a decent amount from the last scan. They all decreased in size and were stable after chemo in Jan but showed regrowth on these scans. There are no new spots so that is good I guess.
Right now we don't have a plan. My original oncologist at MD was out of the office today so I saw a differnt oncologist. He was going to share the results with her tomorrow and she will be getting a hold of us to start the next process.
I'm not real sure what to think about all of this. I was a little worried about the MRI since there was that suspicious spot on the one I did at home (which didn't even show up on these scans). But I felt good about the CT scans and really thought everything would be fine there. I don't think I'm ready to start this awful journey over yet again. I have had a great 4 months of being free from chemo. I just don't want to go down that round again for the 4th time. Maybe they will have something other than chemo that I can do.
I'll update when we get a plan.
Sunday, April 20, 2014
|Jackson teaching Willie how to find worms|
|How many people does it take it get Willie out of the pit?|
|Grammy and PaPa with all their grandchildren|
|Mom is going in.|
We had a great weekend overall. It was nice having everyone together since it is so hard with our busy schedules.
I have been feeling great lately. My energy level is growing and so is my hair. I had an MRI of the brain a couple of weeks ago. There was a very small (3mm) "suspicious" spot that Dr. Bell was concerned about. So he was going to send the scans down to MD Anderson to see what they think about it. We will wait to see what they say and go from there. I am scheduled to be down in Houston on June 1st for my 3 month check up scans and to see the doctor.
Hope everyone had a great Easter and got to spend it with family.
Wednesday, February 26, 2014
We headed to Oklahoma Friday afternoon and about half way there I get a call from the scheduling nurse at MD confirming my appointments. I had asked if there was anyway she could move my CT scan to later in the day. It amazes me what a little effort and willingness to help someone does. She was able to move the scan to 12:40 on Sunday unlike the last nurse who refused to even look at moving it. So this meant I could stay for all the sessions on Saturday and fly out early Sunday morning. So I changed our flights once again, canceled Saturday night with the hotel and car. At this point I was pretty sure I would be red flagged at the airport for all the changing of flights I just did in less than 8 hours.
We had a lot of fun in OKC and all the girls did really well. Friday night we got to watch a NCAA session between Oklahoma, Alabama, West Virginia, and Michigan.
|I scored a 9.925 on vault for West Virginia!|
I saw the neurosurgeon at 8:30 Monday morning with the results from the MRI. I wasn't real nervous for this appointment but its still stressful. I wish every doctor would do what this PA does. As she is opening the door to come talk to us she tells us everything looks great and nothing showed up on the scans. And then she sits down and asks all her questions and does her examination. This is so nice because she doesn't make us wait for the results and doesn't try to have a conversation before she tells us anything.
I was scheduled to see the oncologist with the CT scans at 10:30. We didn't get called back to the room until 11:30. Lets say I wasn't real happy at this point. Its just frustrating to have to wait so long before you are even called back. We had to wait another 20 mins in the room for the doctor came in. Then she comes in and wants to know how life is and then wants to do the examination, ask about the wedding and honeymoon. At this point I don't want to talk about life, I just want the results. After you give me those I would be happy to discuss anything with you. I already had to wait over an hour to see you, so just tell me the results.
These results were just as good as the MRI. Everything is stable if not slightly improved from the last time. The one spot on one side of the liver doesn't even show up, the spots in the lungs are barley recognizable, and the other spot in the liver is way improved. This was such a huge relief.
Now the plan is to repeat a CT scan in 3 months and an MRI in 6 months. I am hoping everything continues to improve.
I need to send prayers to a special person who starting this crazy journey. Stay strong and you will have so many people beside you fighting along with you.
Wednesday, February 12, 2014
Tuesday, February 4, 2014
The last month has been busy and hectic but I wouldn't trade it for anything. At the beginning of January I finally got to see my girls compete at their second meet of the season. I am so proud of how every girl did at that meet. The girls had their third meet two weeks ago and they all made huge improvements and its so nice seeing all their hard work pay off.
This last weekend was the Thumbwars practice tree race which is usually a good time. It is nice to see all the racers during the off season. I did not fair to well and only won a little bit of money but I still enjoyed the night. On Sunday Mom and Dad had the family over to celebrate Kyle and I's birthdays and to watch the Super bowl. It felt good to get to spend some time with my family and the crazy kids.
I saw my oncologist last week and all of my labs are looking great. I didn't get scans done yet because I might get some when we go to Houston at the end of February. But I am feeling great and getting more of my energy back each day.
|Crazy Girls after the Folgers meet|