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

Day 34

And all is well...

I went to Hawaii, it was AWESOME! We are gonna book more tickets and go back again this summer/fall. Beautiful! We went snorkeling, Stand Up Paddling, Jeff went surfing (I watched), hiking, swimming, ate a bunch of pineapple, papaya, coconut, and little apple bananas. No mango for me (can't stand mango). Got to meet about half of Jeff's family which was really nice and got to relax on the beach a bunch.

On last Friday I had an appointment with an oncologist at OHSU specializing in GI cancer. She was super informative, communicative, and nice. They have this conference on Tuesdays where they discuss their new patients (like me) and their cases. All different specialities are in the room (surgeons, oncologists, radiologists, etc) and they are going to be discussing me at tomorrow's session. I have been told that I could be a candidate for liver transplant as long as my lymph nodes are cancer free. One of them showed up as enlarged in the PET scan, but no one saw any cancer in there. Jeff just bought me a rebounder (little round exercise trampoline) that is supposed to be great at draining your lymph nodes. Unlike our muscles releasing toxins from our body through exercising them the lymph nodes do not have any way of getting rid of the toxins except for a "bouncy" type of exercise (running, hiking, bouncing...get the picture) like the rebounder. They say that 10 minutes on the rebounder is better than 30 minutes of running. More toxins get released and the impact on your body is better etc. I am also getting my hands of this cream called Keeping Abreast of It! and it is good for helping to drain your lymph nodes as well. I am just trying to keep them healthy so I can get me a liver soon :)

I begin chemotherapy (cancelled my other appointment as I just wasn't sure about it yet) on Wednesday. Once a week for 3 weeks, then 2 weeks off, 3 weeks on, 2 weeks off, 3 weeks on, then I'm done for a while. Ryan's girlfriend Lauren said to me "Just look at it like this. Sometimes very depressed people need a drug to help them be able to help themselves then they can dump the drug as they are on the road to healing."

WOW!

I hadn't considered it this way before. It made sense to me and I now feel much better about things. I think that the combo of western/modern medicine and natural healing can compliment each other, especially when you really don't have much time to f@ck around in the first place.

I fired my crackpot naturopath. I swear it felt like he was trying to kill me and sell the rest of my good organs on the black market. I am in the process of fining another. Not a whole lot going on this week so I might be able to get an appointment soon.

Jeff and I spent the day at Lowes and the Home Depot. We are constructing a raised garden in our back yard (picture coming soon), so we bought soil (not dirt and yes, it is organic), and some boards for the boarders, a ladder to trim our bushes and trees, two air purifiers (one little one for the bedroom and a big one for the main area). Got to have clean, healthy air. We also bought a little outdoor fire cauldron so we can sit on our patio by the fire and feel like we are camping....YES!!!!

I am psyched to find another place in PDX where I can get a yummy meal free of dairy, soy, sugar and well...ok it does have meat, shrimp, but I also found out that I can eat shrimp so YAY!!!! Coconut rice with black beans and fresh made salsa with two small little shrimp tacos with fresh cabbage, red onions, tomatoes, and cilantro. Found it at Roots Brewery, only the best brewery ever. I'm not drinking anymore but I was the designated driver (a little duty I am assuming that I will have to get used to) so I got to watch everyone else enjoy the beer. Honestly I do not even miss it anymore. I don't even miss sugar really anymore either. I find that I am liking a lot of things that I never used to like, such as ginger. I used to HATE ginger, well except for ginger snaps. Now I love it and even in the strongest amounts can barely even taste it where it used to completely overpower my little taste buds and make my throat hurt. Strange huh?

I am also going to be spending some time looking at some different retreat/healing center/institutes such as the Kushi Institute in California. I feel the need to go away for a couple of weeks and meditate, relax, get healthy, and focus on nothing but myself for a while (no cats, no dogs, no laundry, no dishes, no cleaning......nothing). I think it would do wonders for me.

Ok, enough for now. I will post more when I know what came of the meeting at OHSU. I gotta go make a shot of wheatgrass juice and a green juice. Stephanie (Bills) is in town and when she gets here (anytime now) her, Jeff, and I are going to get some tacos at Roots.

OH! I am going to be posting a "wish list" soon of some things (books, appliances, etc.) that I would love to purchase but there isn't enough money for them. If you have any of the mentioned things lying around feel free to send it my way :) List coming soon.

Thank you for all of the beautiful cards, letters, notes, DVD's, books, and research! They inspire me every day and I am constantly thinking about how many wonderful people there are in my life and how lucky I am to know every single one of you.

Much love, peace, and light to everyone!

cancer can suck it