One of my biggest fears came true last Friday.
My mom and my aunt came down to Portland so that they could go with me to my appointment with the oncologist. We to hear the official results of the CT scan that I had done two days prior. I think all of my friends and family expected the scan to be clean. They have been clean for me since August 2011, just a short 17 months after my original diagnosis which baffled everyone. Upon diagnosis my liver was literally COVERED in tumors. Some were clusters of smaller tumors spattered throughout my entire liver, others were 3-5cm and another one was a whopping 9cm! Everyone wondered how I was even standing in front of them. My ALP (alkaline phosphatase) was off the charts, however my CA19-9 was never elevated. Needless to say 17 months later my scans (PET) showed no living tumors, they were all dead! This inactivity of cancerous growth lasted until my most recent scan done on Jan 16. The prior scan done back in July was also clean. In 6 months I had grown a tumor that looked a lot like a snowman, two tumors touching, both approx 3cm in diameter. This is the one that they are going to perform Y-90 direct radiation treatment on (radioembolization) in the next couple of weeks.
This Y-90 treatment is the same treatment that I went in to see a doctor about on August of 2011. The same doctor that I am seeing now actually. The same doctor that performed the PET that said "complete remission" although no actual doctor ever said those words to me. I guess that scan reports are not necessarily the gospel.
|I call it the "black hole"|
Now, let me just say that yes, it sucks. I don't really know how I feel honestly. I am not afraid really, not so much of the cancer anyway, actually I am more afraid of having to get more chemotherapy. I know how bad it is for me. It kills so many good, healthy cells and not enough of the 'confused' ones. I think that it is almost worse in a way because I know exactly what to expect from chemo. I will feel sick all the time. I will walk around taking note of all of the places that I could vomit if I needed to. I will have to pull my car to the side of the road from time to time to throw up. There will be angry, itchy, hot rashes on my face making me look like I am going through puberty all over again. There will be neuropathy in my arms, legs, hands and feet (feels like needles and pins when your not kind of numb feeling). There will be bone pain that feels like growing pains multiplied by 1000. I will lose my memory, concentration, word recognition and ability to make even the smallest of decisions like soup or salad. Small decisions such as these literally sent me into a panic attack last time, freaky huh? More chemo induced menopause complete with hot flashes so severe that I just want to peel my skin off. Sleepless nights jacked up on prednisone, the chemo buzz you get after your last treatment from all of the toxins off gassing, and my favorite, constipation from all of the pharmaceuticals you take to control all of the side effects from the chemo...
In a way I suppose that knowing what to expect is also good. THIS time I am going to try to prevent some of these nasty side effects because now I know, right? Right. :)
It is weird. When I was first diagnosed I found my "comfortable" place with my "terminal illness" diagnosis. As I have always said "I make my own statistics" and labels don't apply to me (or you!). After I "killed" so much cancer and had a clean scan I was skeptical. I was happy, but I was also skeptical. I know that cancer is sneaky. It doesn't care that your scan was clean. It just wants to live and grow and grow some more. Like I said, "confused" cells. I don't hate my cancer. To me those cells are as much a part of my body as my nose. They somehow, somewhere along the line got misdirected and confused about what they are supposed to do and how to grow sustainably (hmm...sound familiar?). I wish I could just reach into my liver and cup my hand around my tumor and massage it and give it love and guidance. I actually do this in my mind every day.
Back to sneaky cells....Having cancer can make one very skeptical of placing too much hope in one thing (like a clean scan). It is like it almost dulls all the senses in a way, at least for me it did. I always take my good health news now with a grain of salt. I am very appreciative of good news and still very happy about it. BUT I feel like I can never ever let my guard down, I have to remain ever vigilant and in tune with my body. I felt like I was doing so much before but now I feel like it obviously wasn't enough and I still need to do more...
Once again it all comes back to money.
I only really have two choices right now. 1. I do chemo and radiation and continue with my supplements and the multiple other things I do naturally to keep my body as healthy as I can or 2. I don't get chemo and just continue doing what I have been doing which obviously isn't working 100%
It costs sooo much money to even see a new naturopath and get on a new type of natural therapy such as mistletoe extract or enzyme therapy. It is nearly $20K for the Gerson clinic in Mexico and then you also have to redesign your entire lifestyle after that and have someone to help you out 24-7 which is impossible really (unless you have a partner or spouse who you live with that is willing). My only option really is chemo and radiation. This new tumor is in a bad spot, pushing up on my stomach making things very uncomfortable. IF it grows then we could be looking at even more trouble with blockages etc. My oncologist actually told me that people with blockages usually don't fare well....I have been incredibly lucky so far to not have any blockages. If they saw some small tumors scattered around I wouldn't be feeling so drawn to the toxic treatments. But like last time I feel that this one is a bad mofo and needs to be taken down before it has a chance to do major damage.
Now if you have been on my blog long enough you know that I really didn't want to do any more chemo. Not just because of the immediate side effects but because of the long term ones like kidney failure and secondary cancers. Kidney failure is NOT on my agenda. I will go out in a pain riddled blaze of glory somewhere beautiful before I will ever be chained to a piece of equipment for the rest of my life. Im selfish like that I guess. The trick is to not get enough chemo to damage the kidneys beyond repair but that is a fine line and yet another fear to place back there in that dark place in the mind.
|A little message from the Universe to me|