Cancer Sucks

I found myself forgetting alot of the time that I am sick. Overall I look pretty healthy and can function on most days just fine. The thing that sucks the most is when I do an activity that requires any amount of energy I found myself tired and worn down. For example yesterday we went to the Blue Angels show and today I feel like I have a hangover. This happens anytime we do something. I find myself needing to go to bed at 3:00pm for the rest of the night atleast two days a week.

Thankfully I have a wonderful husband that can tell when I have had enough and says to me "Go to bed baby you really need your rest". He has been there for me every step of the way and has not complained a bit. I know it must be hard having to work and take care of me and the children but you are doing a great job and I am glad I have you in my life! I don't know where I would be without you.

On another note my next ct is Tuesday morning. I should know the results within a week. It should have been sooner but my deductible is 600.00 so we had to reschedule a couple of times. I will let everyone know as soon as I know.

For now that's it. I will be eating a grilled cheese and then going to lay down in hopes that I feel better later.

Crystal

Just a quick update

Its been awhile since I have had time to update everyone. Been so busy with school and cubscouts being back in. I had my first ct follow up done in July. The results from it were great! Existing tumors are gone and no new tumors have developed. That doesn't mean I am good forever as I still will be doing ct scans every 3 months for awhile. As for now the Gleevec is doing it's job.

I will see my Oncologist at the end of September which I am thinking my next scan will be scheduled for the end of October. As that will be 3 months. I will not be drinking that nasty liquid again, this time I have to go sit at the hospital 3 hours beforehand so I can drink the liquid that taste like gatorade! I would much rather do that then drink the stuff they send home with you.

The side affects of my meds stink as I never no when I will be sick. I have started losing my hair but luckily I have alot and if you weren't me you probaly wouldn't notice unless you came in my bathroom! I know I have to be on the meds for atleast three years and am hoping that is it. Not sure I am ready to give up on another baby yet!

On a positive note as of the 1st we are officially insured. No more crazy medical bills to deal with. If I could give advice to anyone it would be to always have insurace because you never no when something like this will happen. Thats all for now and I will continue to fight this cancer with everything I got cuz I'm just to damn young to die!!!

CT Completed

So the ct scan was moved up to the 19th and has been completed. I had to prep for the scan by drinking what they call a berry smoothie. I had to drink 1 450ml bottle the nite before and another the morning of. Then when I got there I had to drink something different and have an iv so they can shoot me up with some warm stuff that makes you feel like you peed your pants.

I told the lady when I got there that there was no way I was ever drinking the berry smooth again as it taste like flavored chalk. To drink that much is so hard since the second it hits your throat you are just gagging. She did say when I have to repeat the procedure again in three months instead of drinking that I can come in three hours early and drink what they gave me right before. Which is a much better alternative since it taste like orange gaterade with a little to much sugar. So if every 3months I have to spend an extra 3hours up there thats ok as long as I never have to drink that crap again.

Anyway I will recieve the results for the ct Monday and man does that feel like a month away. I am so ready to find out. Just sitting here makes me wonder if everything came back ok. I am so excited yet so nervous about hearing the results. I will post again Monday as soon as I know whats going on.

CT scan coming soon

So I went to the doctor Monday and she wants me to get my first ct on the 19th of July. As of right now it is actually scheduled for the 25th but am trying to get it for the 19th. Trying to work out some insurance issues. Which is the biggest pain in the butt.

I am so ready to get it so we can see if the tumors are shrinking and no more have popped up! I think the worst part about this is everytime I have some type of pain you wonder in your head if a new tumor is developing. I am not sure if that will ever go away but lets hope it does because it can be a very scary feeling to thing a normal pain is something more serious.

I have been experience a pain in my left side lately that I mentioned to the doctor and she believes it is my kidney. Sometimes it hurts so bad and others it is fine. Doesn't have signs of kidney stones so she doesn't believe it is that. I guess if it is anything important then we will find out when the ct happens.

I did find out that the meds I take (Gleevec) just finished a trial and found that three years is better then one so as of now I will be taking it for atleast three years. The down side to that is for atleast 3yrs I will have to function with the side affects such as nausea. But on the upside maybe it will give me a better chance of fighting this.

Other then that nothing new is going on so lets hope everything comes out great and we don't have to up the mg of the meds or switch to a new one. I will update again soon!

Finding out I have cancer

               On April 1st 2011 I was experiencing sharp pain in my lower left side.  This pain lasted for several hours so we then decided it was time to go to the emergency room.  When arriving my blood pressure and heart rate where through the roof so we were taken in right away.  Once the ct scan was given a surgeon came in the room to reveal the results.  At the time he basically said I have no idea what is wrong so we are going to go in lapriscopically and depending on the problem we may have to cut you open.
                Upon waking up from surgery we didn't really learn much more.  He said it looked like a bomb has gone off inside my small intestines and he had never seen anything like it.  He removed the area that had been damaged and said we will have to wait  for pathology to figure out exactly what was going on.  And oh boy was that a waiting game.  It seemed like forever to get the results back, but it really was probaly only about five days.
                I will never forget the day he came in the room.  Steve had just left and it was only me and Chrissy in the room.  He walked in the room with a paper in hand and went and stood on the end of my bed.  I believe his first words where we got your pathology report back and it is not good news.  (Words you never want to hear from a doctor.)  He then proceeded to say that what erupted in my small intestine was a tumor and it tested positive for cancer.  At that moment you don't really hear anything else.  I remember all I could think about was that I wasn't ready to die.  I had two kids at home I needed to be there for.
             When time seemed to come back into focus we learned I had what is called GIST cancer, which stands for Gastrointestinal Stromal Tumors.  Only about 4000-5000 people are diagnosed each year.  So it is considered a rare cancer.  Luckily in 2002 they learned a medicine designed for leukemia patients will also stop our tumors from growing.  Without that it would pretty much be a death sentence.  So thank God I was diagnosed after that. 
               I will have to see my Oncologist every month and have ct scans every 3 months to monitor the tumors while on the medicine.  The last thing you want is for the tumors to grow as this is a very bad sign.  My first follow up ct scan should be sometime in July which would put me on the meds for 3 months.  I pray that this ct will show no growth and no new tumors.
          I will use this blog to keep everyone up to date with all my doctors appointment and future scans.  You may notice mistakes but i am not a professional writer and am using this to keep yall up to date and help with some of my feeling in this process.  If you have question about the disease you are free to ask and will not affend me.  I learn new stuff everyday.