Saturday, October 26, 2013

Back in Illinois....for a bit!

So, it was a quick trip to Texas and we will start back on Wednesday and drive straight thru as my first IMRT (radiation) is scheduled for 12:45 and again at 8:40 pm......the second one of the day is knocking on the door of my bedtime but most are by 7 pm....I will just eat early as last time I didn't get even a little nauseated if I ate 3 hours before the treatment.   There HAS to be atleast 6 hours in between the two treatments I get per day. Most of the time, it is close to 12 hours in between sessions. I also have bloodwork weekly and two Dr's I see each week. They want to keep a VERY close watch on me. I did see where I was getting 39 gy of radiation PLUS taking a chemo pill called Xeloda to hopefully help the radiation work even better.

We did find housing while we were down there. We called St.Dominique's Village but they never called back but they only charge like $45 per night. It is where we stayed one other time. It has daily mass and lots of activities....lots of retired priests and nuns. Just a nice setting and very, on we went for the search of somewhere to stay. Lots of places were already full since this is so last minute. BUT, we did get an offer from where we stayed last time I got radiation and it was $2020 a month plus cleaning fee....OUCH!  So, we check out a place I saw on the internet called Lakeside RV Resort. Pat says its a rustic mobile home park but also has RV's.  We ended up renting a 5th wheel travel trailer (the owners have several that never move and they rent them out plus they have some mobile homes they rent) and we are only paying like $895 plus $100 cleaning fee. It has a bedroom and it can be closed off for those tired days I might have and the travel trailer has 2 TV's, oven, stove, sink, two recliners, table with  benches......we can do this for 2 1/2 weeks. They said if we paid by the month (which was actually cheaper than weekly rates) we didn't have to pay the 17% motel tax that Texas has. It has a heated pool, hot tub, pool tables in a rec room along with workout equipment....I think we will be just fine at being campers! It also has a shuttle that takes us to MD Anderson but I think we will drive most of the time....

So, I saw Dr. DY from Crossroads in Effingham last Monday....after looking at the radiologist report from MD Anderson, he basically said "you gotta do this and stop that little active piece of cancer or it is going to go everywhere FAST". Scared the ever living SNOT out of me. So...when I saw Dr. Javle at MD Anderson, I told him about the conversation with Dr. Dy and he said that is not true, and that we did have options. Then he said...let me show you something. He pulled up the scan showing my whole body and the size the tumor was 2 1/2 years ago and also pulled the one up from last week. The difference was more than what I had ever thought. In the beginning, it looked to be the size of a grapefruit....and now about the size of a pea. The pea size is the active part that they are going to radiate. So....anyone with cholangiocarcinoma knows this is HUGE. I then asked him about two drugs that MD Anderson and John Hopkins are doing their own trial with...using two FDA approved drugs for other cancers. I just saw where a friend (with Dr. Shroff from MD Anderson) got these drugs and then can go home, take them, and just go back for scans every two months. He stated that is definitely a possibility for me after the radiation if the radiation is unsuccessful. So....I still have options at MD Anderson contrary to what Dr. Dy states. THIS is WHY I go to MD Anderson. Once again, Dr. Javle opened a window and let the sun shine in on me. I just felt soooo much better after his "talk".  DY Javle's appointment was at 10:30 am and then the Simulation was at 3. This is where they tattoo me (but they didn't have to...they can use the three tattoos from last year) but they did mark me up like a roadmap and put tape over it so it will stay on until I go back. It helps line me up in the mold they made specifically for my body. Also, last time I could just breathe and they radiated the area...but this time, I have to wear special goggles that show where I have to hold my breath and keep it in between a specific area for what seems like a long time...but is just appr. 12-14 seconds. That is when they are zapping the tumor. They do not want me moving anywhere...not even had to be THAT precise. As I laid on the mold they had made for me, the girls told me they had to make sure it was spot on and that behind the window was about 12 people making sure they were getting it JUST RIGHT! That included my radiation oncologist, his PA, and other drs to make sure they miss my heart...what heart?   hahahahahahahaha!

It was a long day and then Pat and I started for home until about 10 pm and stopped for the night. I wanted to be home in time to walk in the Halloween parade with Braeda and Amy. We made it...whew.  Pat also got to help with the Democrats giving out free hotdogs at the end of the parade.

Now it is time to relax, take walks, and get things ready for next week. Our address for the stay is Lakeside RV Resort, 11991 S. Main Street, Houston Texas, 77035. If it were not for ALL the cards I received last time, I think I would have went feel free to drop me a line.  I believe our return date to Olney is the morning of November 19, IF everything goes as planned and there are no breaks in radiation due to blood work coming back bad ....BUT were not even going to talk like that!

I hope this pretty much updates everyone on where we are in this cancer journey called life. Dr's say I am really sick but I am not in any pain, I feel great, and it just makes no sense BUT that God has this all under control. As I waited for my appt. with Dr. Javle, people talked about Fentanol patches...pain drugs....and I thanked the GREATEST Healer of all that I was not those people. A lot of people wish they weren't me with this bile duct cancer.....but I am blessed beyond words that God has and will always be right beside me!!

I will keep you updated after settling in at our RV park.....and at MD Anderson since we will be doing quite a bit of "camping" there also!!

Peace be with ALL of you!!


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