Hard to digest

I am still trying to digest the news I got while we were in Houston last week. On a good note, radiation is working and the spots in the brain are getting smaller if not gone. So that was nice news to get right away. But the excitement from that wore off quickly after we saw the oncologist. My CT scans showed increase in size in the tumors that are in the liver and lungs. So that means the 4 rounds of chemo I did didn't work. We believe they are now resistant to chemo so that means we will need to find something else that will hopefully work. My oncologist down there gave me three options; 1)we could try another chemo regimen (not  an option for me since I have done 4 different ones and its not working any more) 2) get on a trial (we believe this is the best option) 3) do nothing at all and just make me comfortable (I am not to this point and I am not ready to just throw in the towel).

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.

Love,
Jeryka

Going Strong

Well, I have made it through 3 rounds of chemo and only have 1 left before I have to do scans again to see if it is doing it's job. And honestly this has been the easiest rounds of chemo I have done. I only have to do one day every other week and have been able to go into the work the next day without feeling bad. I hope the rest of the rounds go this easy.

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. 

Hope everyone is enjoying their summer. I will be pretty busy the next couple weeks but I will try to update after we get the results from the MRI to see if the radiation did its job.

Love,
Jeryka

From radiation to chemo

Today was my 10th and final round of full brain radiation. Overall the process was extremely easy and painless. My hair hasn't fallen out and I really haven't had any other symptoms. My head just started getting tender to touch which is the burn from the radiation. I won't know for sure if it worked until I do a MRI in August.

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.

Love,
Jeryka

Radiation

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.

Love,
Jeryka

Once again

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.

Love,
Jeryka

Easter

Had a wonderful Easter with my family. We did lunch at our house and then took the kids to the gym for an egg hunt. They could have cared less about the eggs, all they wanted to do was play.

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.

Love,
Jeryka

Check up

Getting to Houston was one of the most complicated trips I have taken. The girls had a meet in Oklahoma City on Saturday and I was suppose to fly out from there on Sunday morning for my MRI on Sunday afternoon. On Thursday night after work I decided to get online and check my schedule of appointments at MD. Luckily I did this because they had went a head a scheduled a CT scan for Sunday morning at 7:20. If I wouldn't have looked I wouldn't have showed up for it. Well this caused a dilemma because my flight out of OKC wasn't until 8:30 that morning. The latest flight out Saturday was at 2:40 and if I had to take that one, that would mean I would have to miss sessions at the meet. I waited until Friday morning to try and get a hold of MD to see if they could change my CT scan to later in the day since my MRI wasn't scheduled until 4:30 and we had already booked our flights, hotel and car. I left a message with the scheduling nurse who wasn't in on Fridays. I did finally get a call from the nurse who was just ready to get out of the office. Was no help at all and refused to help me out in anyway. Just told me they were pretty busy on Sundays and if I could just show up for the appointment at 7:00 am that would be great. So getting this scan changed wasn't looking real promising. So I went a head and changed our flights to Saturday afternoon, added a night to our hotel and car.

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!

Sarah made a special trip down to see the girls compete. It was nice to see her!



I got out of OKC with no problems at all and met Kyle in Houston around 11. We headed straight to the hospital to start the excitement. Everything went smoothly during the CT scan and MRI, just took all afternoon.

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.

Love,
Jeryka