Thursday, March 28, 2013

Here we go again

We didn't get the news we were hoping for today. The CT scans showed multiple lesions in the lungs and one lesion in the liver. The one in the liver is measuring about 1.2 cm. They are classifying this as stage 4 since it has metastases from the bladder and is being considered large cell neuroendocrine carcinoma. Since it is stage 4 it isn't curable, just treatable. As of right now I am the first person Dr. Seifker has seen with this type of cancer, so add that to my list of being different and difficult!

I will hopefully start chemo next week at home. They have me doing cisplatin and irinotecan one day a week and then two weeks off. I will go through three rounds them head back down to Houston to repeat scans and an MRI to see if the lesions in the lungs and liver have responded to the chemo. They will also see if the lesion in the brain responded to the Gamma Knife. If the spots in the lungs or liver haven't responded then we will switch up chemo. If the spots in the brain haven't responded then our next step with that is full brain radiation.

Once again I am at a loss for words. I don't know what to do anymore. We have been doing everything they have told us to do and nothing seems to be working. I feel like this awful thing is taking over and I am scared to death. I am scared of one day waking up and being helpless or in so much pain I can't do anything. I am just scared of all that is to come. I thought I beat this one time but here comes another fight and it isn't going to be as easy as the last.

Kyle and I changed our flight to tonight instead of staying until Sat. I am ready to get out of here and just be back home with family and friends.


Bee sting

"Look forward to a great fortune and a new lease on life" I can't wait!

"This will just hurt like a bee sting"......That was so not true. The 4 shots Dr. V (who is the neurosurgeon that did my surgery last week) gave me to numb the top of my head was probably the worst pain I have felt. I got two shots in my forehead and two in the back of my head. The other worst part was being able to hear the crunch of the needle going in. After he numbed my head he put the frame over my head and screwed it into place. That part wasn't all that bad just uncomfortable. The only thing I felt was the pressure on my head as the screws were being tightened. After the frame was put into place I headed to get an MRI done. This one only lasted a total of maybe 15 minutes. Once I was done with that I headed up to a room where I got breakfast and got to hang out with JR and Kyle until Dr. Settle (radiologist) and Dr. V came up with a plan. They reviewed the MRI and came up with how much Gamma Knife I would be receiving and get the exact spots that would receive the radiation. We had to wait about an hour for them to make up the plan.

I got lucky and was the first of three people relieving Gamma Knife for the day. That was nice to know considering they have only one machine and I was informed that each person's treatment would last about 2 hours. I'm not sure I could have rocked that frame for any longer than I had to.

The lovely frame! 

The nurse came up and got us to head back downstairs to get the procedure started. I had to lay on a "bed" (more like a board with a mattress on it). They locked my head down to the bed so I couldn't move my head at all. They let me pick a pandora station to listen to and sent me in the tube. It honestly was really easy. Unlike and MRI, it was really quite,  I wondered if it was even on at times.  After about an hour I need to use the restroom. So they stopped the machine and let me get up to go and walk around a little bit. The whole process took a out 2 hours and 15 minutes. After I was done they took me into a room to remove the frame! The pressure as they were unscrewing it from my head was like they were tightening it but they reassured me they were actually taking it off.

Once the frame was off I went back upstairs to a room so they could observe me for at least a hour.  I got some lunch and took a little nap before we actually got to leave.

Enjoying the hospital's chicken noodle soup!

I have has no symptoms from the Gamma Knife at all. Which they told me I shouldn't really have any but it's hard to believe I haven't had a headache considering they screwed something into my head.

On Wednesday I went in for chest X-rays and a CT scan of my abdominal, pelvis, and chest. We are getting ready to head over to see the oncologist to get the results from those scans and to see what the next step is. I will be heading back dhow here on May 5th to do a check up MRI to see if the Gamma Knife worked. It will take at least that long to see the results.

As far as the study they decided to not put me on the protocol because they were worried I would've put on the observation side instead of the side that receives treatment to the cavity they performed surgery on. They just went ahead and treated both sides at the same time.

I will update after this last appointment. 


Tuesday, March 19, 2013

State 2013

This past weekend was state meet for the girls. This is what they have worked all year for and the hard work paid off. Each and every one of the girls did awesome. Lexi ( lv 8) and Sam (lv 9) both qualified for regionals which will be held in April. The girls have this week off and then they get to come back and work new skills. I can't be more excited about not having to do routines any more!

Level 5's placed 7th as a team!
Our plans have changed a little bit as far as going back down to Houston. I received a call on Monday telling me I had a appointment with the nurse on Monday the 25th to go over the Gamma Knife procedure and then on Tuesday they would be performing Gamma Knife. So we will be flying out Sunday night and spending another week in Houston. I will have scans on Wednesday and then meet with the oncologist and radiologist on Thursday.

I also received a call telling me I was eligible for the study the radiologist talked with us about. I don't know if I will be in the group that receives the gamma knife after surgery or the group that just gets observed. I will find more out on this on Monday when I meet with the nurse.

I hope everyone has a great week and I will update this from Houston.


Thursday, March 14, 2013

Waiting game

It has been a week since I had the lesion removed from the left side of my brain (I think I originally said they would be removing the one from the right side) and I am feeling pretty good. This surgery was may more easy than when they removed part of my bladder. I haven't had much pain associated with it considering they did cut my skull open and perform brain surgery. I was pretty worried I would have a terrible headache afterwards and wouldn't be able to function but that is not the case at all. I got released from the hospital the Saturday after surgery and was back in Kansas Sunday morning. Between the steroids I am on and the fact that my mind has been running constantly I haven't had the best of sleep. Luckily the doctors here gave me a prescription for sleeping pills that have helped me relax but I'm still not getting the sleep I am use to.

The beginning of the week was actually pretty hard on me. I just wanted to stay in bed and hide. I was mad at everything. I was mad at myself for allowing myself to be so negative. That is all I did at night was lay there and think. Think about all the what if's and the whys. I allowed myself to search the internet and read stuff that I shouldn't read. I have been trying my hardest to stay positive and to be strong through all of this but I failed this week. Each day has gotten better and I have made myself be positive and only think positive thoughts. Everyone else is staying strong around me so it is only fair to them that I stay strong right beside them.

Right now we are playing the waiting game. I will be heading back to Houston on March 27th to do scans and to see the oncologist. I am hoping by then we will have the pathology reports from surgery and will be able to move forward with a plan.

This is the MRI before surgery. If you look closely the lesion they removed is on the right side of the picture (which is my left side) near the front of the head.
This is the aftermath of the surgery. To my surprise they didn't have to cut the whole side of my skull off to remove this lesion.
The girls wrote me letters and mailed them down to me.
Time to eat better.
It was so nice getting to see all these crazy kids
Monroe drew me a picture from my Topeka win. I love the detail she put into it.

This is the letter I recieved from Chow. He was Shawn Johnson and Gabby Douglas' coach at the 2008/2012 Olympics. I am pretty obsessed with this guy. He never stops smiling!

The team made me a blanket. They all signed one side and wrote quotes on the other.
I love these kids!!

Tuesday, March 5, 2013

Better Feeling

After last Thursday I wasn't sure I wanted to meet with any more doctors. I was just ready to go home and forget all of this, but we couldn't. We had to get up the next day and meet with the radiologist to discuss sterotatic radiosurgery. Lets just say this appointment went 100 times better than the one the day before. The doctor explained everything so well and he felt really comfortable doing the radiation called Gamma Knife on the lesion that is too deep in the brain to remove. We also discussed a randomized study I could be a part of that would consist of either observing me after surgery or doing gamma knife to the cavity where the lesion gets removed from. We will have to wait until we figure out what type of cancer this is before we really make a decision on what direction we need to go as far as radiation.

 This is a video about Gamma Knife. We were shown this at the appointment and it helped us understand the procedure more.

After that appointment Kyle and I headed to the airport for a short trip home. It was so nice to be back in KS even if it was cold and there was snow on the ground. I got to go into work for a little bit on Saturday and get caught up on everything that has been going on. Alicia and Pam have been keeping the gym under control while I have been gone. Saturday night we had dinner with Kyle's family and just hung out at their house with no worries at all. Sunday Kyle and I headed back to KC to have dinner with my sister and her family before we headed back to the airport.

Monday morning I had the appointment with the neurosurgeon that also went really well. He showed us the MRI and pointed out where each lesion was. He explained how he would go about removing this and answered all our questions. I was expecting them to remove the a big chunk of my skull to get this lesion out and then I thought they would staple it all back together. I figured I would be in major pain and not able to do anything for a good amount of time......All of that is wrong. He will be making a very small incision right around my left temple at about the hair line (so they won't have to cut to much of my hair!). They will close the incision up with dissolvable stitches and I would only have to spend 3 days in the hospital. I won't experience too much pain other than when I chew food up. I think I can handle this one!

My surgery is scheduled for this Thursday and I should be able to leave the hospital by Saturday morning. On Wednesday I will have to do lab work, get another MRI so they can double check everything and then I will meet with the anesthesiologist. Thursday they will do to procedure, which should only take a couple to three hours and then Friday I will get another MRI to make sure everything still looks good. It will probably take the pathologist about a week to determine what this lesion is because off all the possibilities it could be.

Mom got to experience MD Anderson for the first time and she did very well. Kyle and I have gotten to show her around "our town" and I think we are going to take her to Rodeo Houston on Tuesday and let her experience that. Lady Antebellum is playing after the rodeo so I am looking forward to that and also excited to see if any more baby pigs were born since the last time we were there.

I am planning on going home early next week and be back to work as soon as I get home. State meet is next weekend and I am really hoping I am able to go. I have missed all the girls and all the coaches at the gym so I am looking forward to getting back. I have been very lucky to have such wonderful coaches that have helped with the gym throughout all of this. I am very thankful for each and every one of you.

I will update as soon as I can after surgery. Thank you for all the well wishes and prayers. I love you all!