Radioactive

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.

Love,
Jeryka

Houston Bound

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.

Love,
Jeryka

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