Monday, May 20, 2013

....a week for the BOOKS...

Its that time again, time for blogging! :)
Today (05.20.13) I had an appointment with Dr. Zaky. 
If you remember her from way back in September-November, she was my radiation oncologist.  Which means she is my radiation doctor.  I haven't seen here since March 6th. 
LOT has happened and a LOT has changed since I last saw her. 
My appointment today was at 8am. 
We (Scott, Mom, Ashley, Grammy and myself) met with Dr. Zaky.  We talked about radiation and really just had a consultation type appointment. Got all our questions answered.   
My "team" of doctors all have suggested I get radiation done to my pelvis...AGAIN. As I have active tumor in this area.  My scans all came back showing tumor present in the "vaginal cuff" area. 
I had scans done in Chicago when I was up there and it showed tumor but we didn't get a copy of the CD so we weren't sure what we were looking at and just going off the CT report. 
After we all met with Dr. Zaky, we did what they call is SIMS testing. 
Let me explain to you what SIMS testing is...SIMS testing is when they put you in a CT machine, and gives you small bowl contrast to drink.  They get you in a uncomfortable position on the table and send you through a series of scans.  Once this is done, the scans show a few things. 
1) IF there is tumor present
2)WHERE the tumor is
3) HOW big the tumor is
4) WHAT organs/structures are effected
After my scans were all done, we met with Dr. Zaky again and we LOOKED at the scans. 
This is what we saw...ONE: there is active tumor in my pelvis.  Which we knew.  BUT, there is about 4 tumors in this small area that all seem to be connected to each other.  TWO: we saw specifically WHERE the tumor is.  Which is in the space between my vagina, rectum and bladder.  This is just "empty space" since all my lady parts have been removed.  Currently the tumors are growing INTO my vagina.  Putting pressure on my bladder AND rectum, BUT not invading those spaces.  Which is the best news we could ask for given the current situation. 
The tumor when I was last seen in March was about 1.5cm.  It is now grown and is taking up about 1/3rd of my vaginal space.  Which is the BAD news.  Since the tumor has developed into tumors, and have grown from 1.5cm to the mass it is now radiation will be very tricky.  We will have much more tissue to radiate for one, and two that means side effects are higher and three my bladder and rectum are now effected by MORE radiation. 
GOOD news is the tumors ARE NOT invading the bladder or rectum.  They are just putting pressure on those areas.  The reason this is good news is we can do radiation to stop the growth into those areas, even possibly SHRINK the tumors.  If the tumor continues to grow and invades either of these spaces, then we are looking at high risk for infections.  What COULD happen is the tumor can build a "tunnel" of sorts from the bladder and or rectum or both and eventually causing my bladder, rectum or both to send urine, or stool down this tunnel and out the vagina.  Which causes infections, and the qualify of life for the patient is then decreased. 
Surgery sometimes doesn't always work to correct this.  We do NOT want this to happen.
So the sooner we get radiation going the better. 
As of right now I am scheduled to start radiation on Tuesday March 28th, 2013 at 1pm.  I don't know yet, how long each treatment will be, or even how long treatment will last.  Once my treatment plan is made (which will be this week) I will have the answers to those questions. 
I am going to see another radiation oncologist on Friday.  This radiation oncologist does "cyber-knife radiation" which is still radiation, but it is more pin pointed and precise.  Which might decrease the effects of radiation on my bladder or rectum.  Which is what we want...we just don't know if this type of radiation will benefit MY type of cancer.  Still worth the trip to Scottsdale to find out.

I have my LUNG BIOPSY scheduled for tomorrow at Banner Desert at 8:30am.  I had blood work done today and my orders, and authorizations are all in and I'm ready to go! :) 
I check in at 8:30am and my procedure is at 10:30am.  I will have results back on what is going on in my lungs in about 7 days from tomorrow. 
Then we will know just how dirty this cancer is playing. 

Wednesday I have an appointment with BANNER MD ANDERSON.  This is my consultation and I will be meeting with Dr. Matthew Schlumbrecht, MD.  He comes HIGHLY recommended by Dr. F from MD ANDERSON in HUSTON.  I have been in correspondence with Dr. F for a few weeks now.  I was going to make the trip to HUSTON to see Dr. F, as he sees many of my sisters (SCCC/LCCC Sisters) but once I talked to him he suggested I seek treatment here in Arizona and that I see DR. SCHLUMBRECHT.  Since Dr. Borst is sending me to BANNER MD ANDERSON anyways I will see who comes highly recommended.  I hope he can shed some light on the current situation and help us out with our course of action.  Even better if he is here in Arizona. STILL NOT HAPPY that I am going to BANNER MD ANDERSON

Thursday I will see Dr. Borst at 11:45am.  This should be an interesting appointment to say the least.  I have a few choice words for this physician and I am irritated with this office.  So Thursday will be fun for me.  Ha ha! :) This is when he is suppose to let me know if I can have the lung biopsy done or not and give me more information about clinical trials.  Which is why he is sending me to BANNER MD ANDERSON.  So the whole reason he wants me to come to his office will already be taken care of BEFORE I even make it to see him for him to tell me to do all this.  WHATEVER...

Friday...Oh Friday.  I will see the Cyber-Knife Radiation Oncologists.  This appointment is at 2pm.  Scott has me scheduled to see some other alternative treatment center at noon this day.  Its a week for appointments! Grammy says "how do you keep it all straight" I have two calendars and I coordinate them both one on my phone (I always have it one me) and my daily planner at home (for when I am at home).  Mom made the comment today "you have made more phone calls today in one day than I make all year" haha story of my life...If I don't stay on top of my medical care then who else will?

I will keep you all posted on what comes of these appointments, so look forward to more blogging this week or next! :) Things are happening, and moving ONLY took 3 months to light fires under some asses...but I hope we are well on our way to a cure! :)


1 comment:

  1. Your such a warrior princess and God is with you thru it all can't wait to see God open the right doors durig this time! Im praying for you! ♥♥