Whirlwind Travels?

I'm breaking this post into 2 sections. First is the simplified version to get info out quickly. Second, will be a longer description for folks who may want to read more and it acts as a sort of journal for us.


*Reader's Digest version: Duke=not for us, Dr. Burzynski=great experience, home for 6 weeks of radiation then back to Dr. Burzynski to begin treatment for a week or two*





So we are waiting on our last leg of our trip this week. Due to the snowy weather warnings for Atlanta our flight this morning was canceled. We are on standby for 2 flights directly into Huntsville this afternoon but if we cannot get on those we will have to stay here another night and return home tomorrow. This has been a long and sometimes frustrating week. I miss my kiddos so much. I really struggled this week. Rich and I have taken short vacations away from the kids before but we focused on each other and our relationship and thus enjoyed the refreshing break together. This trip has been about me and my cancer and I didn't enjoy it much at all. If I'm not spending fun time with my hubby then I want to be spending fun time with my children and family. The highlights were visiting the beautiful Duke Chapel on the University's campus, visiting the Houston Temple, and enjoying a yummy dinner with my cousin Julianne and her family. We had a nice time with their beautiful family...it reminded me how much more I wanted to be home!! Thank you Julianne and Richard for opening your home to us!!

After arriving at Duke we learned that I do not qualify for any of the trials they are currently performing there. They were unable to open the CD sent to them from UAB (though Rich was able to pull it up quickly on his laptop!!!!!!! FRUSTRATING!) so they had not even seen my scans. The Dr. we visited with quickly stated that she was seeing alot of tumor growth and that there was so much tumor there I would need another resection before any treatment could be performed. We tried explaining that it was what was left from surgery and deemed unsafe to remove without significant damage to "me". It wasn't until she looked at the more recent scan that she agreed. The fact that I hadn't had 100% removed automatically disqualified me from some of the trials. We were very frustrated that they couldn't have determined this WITHOUT us being present. Duke may be a fantastic option for some patients but not for us. I can't begin to express how heartbroken I was just hearing that she was seeing "so much tumor growth". I thought for sure that just in the last 6 weeks the tumor I had gone through so much to have removed had grown so quickly. It was very disheartening and I had a hard time digesting much else of what was presented to us. Fortunately that wasn't the case, but what a difficult few moments those were for me.


We left North Carolina for Houston with high hopes for a better experience at Dr. Burzynski's Clinic. We were not disappointed. The office was very efficient and when we arrived Rich mentioned that Duke had a difficult time opening the CD and the nurse replied, "We have our own IT department that can take care of it." That, in and of itself, was a relief to hear. We met with a few nurses and doctors in partnership with Dr. Burzynski and then spent some time with him in person. He stated his thoughts for the best course of treatment for me and we are moving forward. His lab is running tests for gene markers to determine the exact treatment that will work best WITH my body to defeat this cancer. He does suggest that I have a few weeks of radiation while we wait for the test results just to control any growth of the tumor but he gave me some supplements and medication that will help control the unwanted side effects of the radiation. We will return to Houston in 6 weeks for the beginning of treatment with them.


Thus begins my (our) new reality. A reality of treatments, medications, doctor visits, scans...just to keep me alive and kicking. One of the medicines I'm taking will slowly increase until I am taking 6 pills 6 times a day!!!! That's 36 pills!!!! This new reality has hit me in stages...first with the diagnosis, then in facing a serious surgery, now in dealing with long-term treatment. I have felt every emotion there is...every one except "Why me?" I still feel strongly "Why NOT me?" We are so blessed with friends and family that are willing and able to help us. This trip would not have been possible without donated miles for flights and hotel points for our nights. We have family members who are donating time and resources to help with my treatments. We have loving friends and family who are able to help with our kids and with whom our kids love spending time. My friends are amazing...I so appreciate having each one of them in my life. I have an awesome family from my parents to all of my brothers and sisters, nieces and nephews, my wonderful mother and father in love (to borrow my friend Patty's term) and my sisters and brothers in love as well. I have a strong faith in my Heavenly Father and his plan for me. So I say why NOT me? I AM BLESSED!!!! I have so much to be thankful for.