Thursday, May 2, 2013


Today was our last and finally consultation day here at CTCA. 
My day started about 8am Illinois time and we are still going strong.  Its been a long day but not nearly as long and tiring as yesterday (for whatever reason) We got a lot of information and a lot of our questions answered.  A lot of NEW information as well.  Some bad and a lot good. 
Let's see where to start with today...
My first appointment for the day was at 10:30am with Dr. Williams the Oncologist, followed by 11:00am with Naturopathic Medicine, 11:30am was Nutrition, 12pm was case management, 1pm was tying up all lose ends before we leave for home.  Dr. Williams...she is first and foremost important. She gave us the run down of labs results, scan results and her treatment plan.  On paper (IE labs) I look like a very healthy individual.  On films (IE scans) I am a little bit of a wreck.  Good thing we do both of these hand in hand.  Labs all came back good.  My levels are all within the right ranges, with no cancer markers lighting up.  That's GREAT news.  My cholesterol was a little elevated, but they insure me this is nothing to worry about as my labs were drawn late in the afternoon after I had eaten.  Plus after talking to the Nutritionist she assures me I am not eating any foods I should be staying away from to elevate it.  My platelets were 111 on Monday, which is GREAT, but not so great.  They haven't been THIS high since November last year.  Why is that not great, the reason for them being so high is due to the steroids Dr. Bibb has me on.  So that tells us I do in fact have ITP and that needs to be addressed and treated ASAP.  I am thankful my labs are all up and in normal ranges.  This helps fighting this disease a little easier. EKG that was done on Monday was NORMAL as well!!! More great news!!!! :)  ON to my SCANS...The ones we have been waiting for so anxiously.  First was the Brain MRI.  That came back CLEAR...MORE GREAT NEWS...My brain has NO mets! :) Thank you Lord! Now we have a baseline to go off of for future scans of my brain.  CT SCAN of the CHEST, ABDOMEN AND here comes the kicker...BRACE yourselves.  They found changes in my CT Scan from my last CT Scan back home.  First change is there is now a spot on my right Adrenal Gland (which sits on top of the kidney).  The left adrenal gland looks and appears to have no tumors or masses.  Both kidney are clear and have no signs of hydronephrosis or metastatic disease.  Gallbladder is absent, Pancreas is normal and spleen are all normal.  Which is more GREAT NEWS!  The CT scan does mention "small ill-defined hypodensity in the periphery of the right lobe of the liver.  They should be followed."  So we will continue scans to watch this area for metastatic disease.  As for the pelvis, there are several masses.  As my new CT Scan shows, I have currently three tumors/masses in my pelvic region (where the cervix was).  Also says "nodular lesions also seen in the area of the vaginal cuff including the cul-de-sac."
Treatment:: NO RADIATION
The reason for this is my body has already gotten it's maximum dose of radiation, especially to the pelvic region.  If we do anymore radiation to this area there is a chance of doing more damage than good.  CHEMOTHERAPY is my treatment of choice.  I can't tell you how many rounds, as we don't know.  The chemo drug they are putting me on is called Temodar.  It is an oral medication I take everyday for 21 days and then break for 7 days and then start it back again for 21 days.  It's a low dose chemo drug, but can be increased to high amounts if my body can handle it.  We will start the dosing out at 140mg a day and increase from there if need be.  The main side effects are:: Fever, chills, cough, sore throat, body aches, seizures, severe nausea or vomiting, sores or white patches on your lips, mouth or throat, usual bleeding, bruising or weakness.  The most common in patients taking this medication is nausea.  I have gotten scripts for this in case it happens and let's face it I am an old pro with handling nausea! :) The one thing this medication WON'T do is make me lose my hair! :) That's MORE GREAT NEWS! I might have some thinning, but it won't fall out like it did this last time. 
I will still continue to get regular labs drawn weekly.  I will follow up with CTCA here in Zion every two months.  At these visits we will increase or decrease my medication, do scans and do all my follow up care at this time.  Dr. Williams said normally I would follow up every 3 months, but she doesn't want me waiting that long between visits to make sure it's working.  This medication WILL shrink the tumor to NOTHING! There is only three reasons why I would stop the Temodar, One: If it shrinks the cancer and I have no cancer left in my body.  (WHICH IS WHAT WILL HAPPEN) Two: If the side effects are too harsh on my system and we have to change to another medication.  Or three: The medication isn't doing what it's suppose to by shrinking the tumors. (which isn't going to happen).  Otherwise I will stay on this medication until all the cancer is gone from my body...which could be any time.   
So this is all the news this whole week has been building up to! It's a lot to take in, especially with having more cancer is places we didn't know I had.  Strangely I feel at ease,  I feel like a huge weight has been lifted from my shoulders and I feel God's guidance.  Since before coming out here Scott and I have had it weighing heavily on us doing treatment in another state.  Having to travel, being away from home etc.  I prayed last night that if this was the path I was to be down, where I was going to get batter, that God would give me a sign.  I would say he has given me the biggest sign there is.  He has let it be possible for me to still be seen at CTCA, but get treatment at home!   I can't thank him enough for the answered prayers.  God Is GOOD
We are all set to fly home! I can't wait.  Before we do this, we are taking ONE full day to spend in the City...We are going to see everything Chicago has to offer!!!  Which means we will see the SHEDD Aquarium, "The Bean", possibly eat CHICAGO STYLE PIZZA, Get some Sea Food and see all the sites!  Tomorrow will be a busy day of sight seeing and train rides, and I CAN'T STINKING WAIT!  This has been a wonderful experience and I am so thankful to Scott for being here every step of the way.  I know how stressful it is on him (as he worries way too much) and I know I am NOT the easiest person to be around ALL THE TIME...especially with my mood swings.  Sorry babe.  I want to thank my family for being there throughout this whole process and understanding, loving and supporting me anyways! :) It's a long road, but I know we will pull through it. 
We are all survivors! :)
We will arrive back home in Arizona about 10:20am on Saturday, JUST IN take a quick nap and get things going for THE RELAY FOR LIFE!!  I am SO excited to be able to make this event, as I have worked so hard on making it happen and I would just be so sad if I couldn't make it.  It will be a long weekend for Scott and I, I am sure of it!  We will be up about 2:30am on Saturday Morning and will be going non-stop until about 7am on Sunday.  IF I CAN DO IT WHILE FIGHTING CANCER, YOU ALL CAN DO IT TOO...
SO I EXPECT YOU TO BE THERE, WITH BELLS AND WHISTLES ON, and I expect to make it the best Relay! :) 
I will see you all Saturday afternoon REMEMBER camp set up time is 3pm-5pm, so you WILL need to be there between these hours to get camp set up as Relay starts promptly at 6pm!  There is opening ceremony's so PLEASE make sure to be at Relay between 3pm-5pm.  If you are unable to make it for ANY reason, please call, text, or email me so I can make the necessary changes to our roster.
Thank you for supporting! See you all Saturday!!

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