6 Years of The Beast

I was diagnosed with breast cancer on the day before my 31st birthday in 2010. My five year cancerversary came and went last winter. I was so sick I hardly knew what was going on… because I was desperate to try Tykerb and Xeloda to kill my brain metastases, so desperate that I did not tell my doctor that I was using the restroom more than 14 times a day and couldn’t really leave the house (my brother and his family stayed with us and hardly saw me, at least we had a cute puppy to sort of entertain them eh?). I look at images of me from the last week of December 2015 and I LOOK sick. My early January appointment uncovered a potassium of 2.3 and normal is 3.3 to 5.0. Now… no one ever told me that having your potassium way off can cause your heart to just stop working. Oops (my mom freaks out when I respond like that, she was also upset when the hospital didn’t freak out quite at the level she did, my medical team freaked out. The team caring for me when I was hospitalized seemed to feel like maybe it was my time to go). HELL NO.

That puts me at 6 years since my initial diagnosis, we guessed I was metastatic fall of 2013 (about 3 years from diagnosis) and my official stage IV diagnosis was October 7, 2014. We found brain mets in fall of 2014, and leptomeningeal metastases summer 2015.

When my pessimist comes out to play, this year, it kept telling me that I probably wouldn’t see another Christmas. This would be┬ámy last summer of fun with Fifi and I was headed out (after rounds of bad news and more bad news). It was nice to learn that that little voice in the back of my head is incorrect. I survived the year, but I watched a lot of wonderful women and men die throughout the year. It may have been the year of celebrity deaths, but 2016 felt like a big year of metastatic breast cancer deaths. The longer I am in the metastatic community, the more people I know and love will pass away (someday I will be the person that is the part of the community that passes away unless we find a serious miracle, soon).

I have continued to drain my left lung every other day. There is fluid in my right lung and I am hoping it isn’t growing too big. I also have a pocket of cancerous fluid near my heart. Draining the left is a cinch now, the pain I experienced in the beginning is gone. I have to remind myself to go slow when I empty it (it gets kind of tiresome to sit and watch a bottle go “drip… drip… drip…” and the dripping stops sometimes so you have to turn up the suction and drip some more). It hasn’t been consistently low enough to remove it. It teases me and then doesn’t do what it is supposed to. The amount it drains at the moment is less than it was before, so that part is an improvement. I see my Pulmonologist soon and won’t have much to say/get excited about (I sure wish I did, I would like to get this catheter removed and snorkel in a sunny tropical place).

I have heard rumors that Doxil starts packing its punch after 3 cycles. I will have my 3rd cycle on January 13th. I am supposed to have my MRI that helps us plan Whole Brain Radiation (WBR) or no WBR on the 12th, but my insurance turned it down on first go (agh! I am not used to my insurance shutting things down). My secondary insurance approved it, but they can’t really pick up the tab (how doe this stuff work out!?). Makes me wonder if I should just switch… kind of annoying when you pay for double insurance and get stuff turned down. I try to make sure that we always have an insurance that covers our major cancer hospital no matter what. I can’t wait for medical insurance/care to get even more complicated in this country (sarcasm intended). I don’t even want to know what a hospital bills for WBR, but SRS is at least $100k.

We had a small amount of excitement over two CSF (cerebral spinal fluid) tests coming back negative for tumor cells, the 3rd one I needed came back positive for tumor cells. *Sigh* I didn’t let myself get my hopes up TOO much, but for a moment there… well… I hoped we were knocking those cells sky high and had a definite pre-MRI “nope” for WBR.

With the air quality we have had in Utah, I have been coughing my lungs out of my chest. My oxygen tanks help, so lately I have been on oxygen more and more. I keep hoping I can rely on things like that less and less. I look like a cancer patient. Once I lose my hair again, hooked up to oxygen I am going to look like a pitiful soul.

Kira got big! Zack and Dante are my snuggle pups.





Author: Mandi

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