Tuesday, March 12, 2013

3 month check up

Yesterday was my 3 month check up from my oncologist up at UCLA, Dr. Lai. I got very stressed out on Sunday, which usually happens in the days before my appointments.

Sean and I left for Los Angeles in the very early morning, before the sun came up. It was a quick drive up to the hospital, a little over 2 hours, which is the reason we leave so early or we would be stuck in traffic for hours.

First thing was my MRI and that went quickly for me (probably longer for Sean in the waiting room).

Next we walked over to the oncology department. This is when it really hit me, I'd know my fate in a matter of minutes, but the wait seemed to last forever, and I seemed to get more and more nervous...

Finally I was called back and my mind was more at ease. I did all the usual stuff, weight, blood pressure, and was then brought back into a room, which happened to be right next to the screening room for MRI images and our door was left open, so I could see the doctor zooming in and out on several images, my heart started racing and the worst thought started running through my head. Then his assistant came in and did the usual tests...walk in a straight line, remember these 3 words "computer, bicycle", and one other I can't remember right now (but they are always the same 3 words).

After going through the quick exam with the assistant, it was time to go to the imaging room. And yes, just like you can see in the picture, it's a rather small room for 4 adults to stand in.

In the room, we discussed the alternative treatments I have been trying and he knowing their has not been any clinical trials (as the FDA can't patent natural things and steers doctors towards pharmaceuticals). My doctor said that it is impossible to see any growth on the images he compared from the past 3 months. That is the reason we are waiting until my September MRI as it takes about a year or hopefully more in my case, to be able to see growth as it grows so slowly. That was such a relief, but he did point out where the residual tumor is in my brain. We also discussed treatments and he's good for now with me simply continuing my natural treatments and not wanting to do chemo or radiation (what's the point if there is no cure) and this will give us more time with the vaccine I received in the clinical trial. This was great news and I was already on a high. Then he started talking about how my treatment would probably be different in 3 years (now remember over a year ago he gave me 3 to 8 years to live), so hearing that he thinks I'll still be around in 3 years made me really happy. I mentioned it to him and he said that he goes based on statistics and that now that he's had some time with me, he can see that mine is growing slowly and when he gave me the 3 to 8 years time frame he wasn't sure on how quick or slow mine would be growing.

This was the best news yet!! My goal is to stay around to see my kids marry and to get some grand kids!! So, I was very happy after this doctors appointment!! My next appointment will be on June 10th, just after my birthday!

Tuesday, March 5, 2013

LYMI, Anniversary in Dallas for Cheer

Friday, March 1st, was my one year anniversary from my last brain surgery. I was able to celebrate it this year in Dallas, Texas with my daughter as we were there for her cheer competition.

Last year we were unable to attend the competition and ended up having to pull her out of cheer, so it was wonderful being able to go this year. It really meant a lot for me to be able to attend.

I was hoping for more of a mother/daughter weekend, but with Faith being a teen, it was more of a weekend for her to hang out with her friends. I had fun hanging out with the moms, but was kind of bummer because I wanted more time with her before she goes away to college.

One night while getting a drink with one of the moms, I struck up a conversation with the couple next to us. Let me give you some back ground info....last year at the competitions there was a money jar passed around in which people put a couple bucks to raise money for a cheer coach battling cancer and going through treatments. There was a short video played about the coach. I remember she was a beautiful young woman. The couple I sat next to were her parents, she passed away last November. It was great talking with them and it really made my weekend feel right. I happened to be in the perfect place at the perfect time.
Her family is using the leftover funds from her fundraising to help pay for people to do cheer and dance. Their website is lymifund.com and Amy came up with the phrase LYMI, Love You Mean It!! I love that!! Amy was a great coach, sister, wife, and daughter. Her story is amazing and so inspirational. Please look at her website and read her story!

The cheer competition was great! Faith really enjoyed herself! Her team did well and I had a great time wandering around Dallas with another mom and seeing the sights, including the 6th floor museum, all about Kennedy!