Saturday, July 28, 2012

PET scan results and other fun stuff

She's radioactive!
On the 12th I had my 4th PET scan.  My oncologist decided to do another PET instead of CT so we could see what has been going on for the past 2 months.  I must say it is a little weird to go from having to see the oncologist weekly, then bi-weekly, then monthly, to bi-monthly...I just can't help but worry about it being that long in between visits, wondering if in that time something might start growing out of control or something.  But instead I choose to focus on the positive, perhaps that is partly what has gotten me this far, who knows?

As usual I always request a copy of the scan on disc that same day (and I sit in the clinic and wait for it) and as soon as I get home I plug it into my computer and scrutinize every little detail hoping not to see those tell tale dark spots in the image as I examine it from every possible angle.  It looked pretty much just like the last scan (THANK GOD!) and I was content to wait until the following week to get my "official" results from my oncologist.

Now if you have ever heard of me describe my oncologist, you will know that he is pretty stoic.  He never really gets excited and never really gets worried, or if he does he never shows it.  However, this time was different.

I sat on the exam table as usual and looked at the scan results with him on the computer.  He said "Things are still looking very good" and then turned to me with a smile on his face (first one I have ever seen) and said "How many people do you know that are in your situation?"  I said "no one" to which he replied, "Exactly! You are an exceptional case!"  You just have no idea how long I have waited to get that excitement from him! It just made my day!

I still have yet to hear those words "you are in remission" and I suspect that is because I still have masses of tumors, although dead, in my liver.  They keep shrinking slowly but surely and I am so thankful for that!

I really picked my oncologists brain that day, making sure to ask him all the questions that I had forgotten to ask before.  I got smart and wrote them on a list this time so chemo brain could't forget.  I told him that I feel like I keep waiting to feel normal again.  Like I can go to work for 8 hours a day, or be able to concentrate on something without losing that concentration or getting so frustrated that I give up.  I'm waiting for the day that I can feel consistent.  One day I am full of energy, and the next I could be on the couch sleeping the entire day.  I may go out to run errands or for a walk and end up so tired and exhausted that I can barely drag myself back to my door.  He admitted to me that unfortunately there is no money to be made in cancer survivorship programs, no drugs that they can sell you, nothing to market so to speak.  He made it very clear that he felt this was an area that definitely needed improvement and where there was a huge lack of resources.  He said the best thing for me to do was to have a great support group (family and friends etc) to help me out.  I have that.  It's YOU! But all the emotional and/or financial support in the world is not going to help me shake those nasty chemo side effects.  It will just take time, good nutrition, exercise, rest and a positive attitude.  Who knows, those side effects may never go away.

Just a girl and her jackhammer
Sometimes I feel that others think that since my scans are clear and I am not getting chemo right now that everything is all back to normal and life goes on like before.  Well, let me say that this is far from reality.  I am still waiting to get my brain back.  It's getting there, slowly but some progress is better than none at all :)

In the meantime, my mom and I went to southern Oregon to dig for fire opals at the Juniper Ridge Opal mine.  It was spectacular!!! We had so much fun and found so many awesome specimens! What a treat! On the way back we found this awesome little hot springs by the hwy (58) and soaked in its 120 degree water for an hour or so.  It was heaven!

I also got interviewed by our local Fox news station yesterday at The Center for Traditional Medicine about why I get my nutritional and high dose vitamin C IV's.  It was exciting! I don't know when it will air yet but I will keep you all posted.  I don't have tv (can't afford it) so I will have to see if I can get a recording of it or go to a neighbors or friends house to watch it.

some of my loot!
I want to give a HUGE shout out to all of those of you out there who have contacted me about you or your loved ones who have cholangiocarcinoma.  I am so honored to be able to share my story and experience and resources with you.  I want to help you out as much as I can by sharing those resources, so please do not hesitate to get in touch with me.  Sometimes I may be a little slow to respond but I promise I will get back to you.
first time ever river kayaking


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