Patiently Waiting

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.

Love,
Jeryka

Our new warm ups for the season.

Just being at the track makes.everything better

Except when you lose a race like this.

My pink tutu for Pink Out week at the gym. And who knew I could make this myself!

NIH

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

 Love
Jeryka

Maryland

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.

Love,
Jeryka

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