I hate Pinktober oh and I have Brain Mets… #64

….And while it (or they) are very small, I am still terrified. As you know I had my scans all last week. A brain MRI on Tuesday, PET/CT on Wednesday and Abdominal CT on Thursday. Tuesday afternoon The Blood Guy called saying the radiologist called him stating there was a very small spot showing on my brain MRI. It has not been there before and so it should be considered as mets.

Now, I’ve had a brain MRI every year since I was DX with Metastatic Breast Cancer in 2014. Really having them for prevention and a couple years ago I had headaches. Fortunately, then the headaches were caused by the chemo I was on the time, Xeloda.

It has been a very long week what with scans and now preparations for treatment of said brain mets. I met with a neurosurgeon (The Brain Lady) and The Nuker (radiation oncologist) on Monday. They said there is definitely one spot, measuring 3mm. VERY small and there are 2 more areas of concern. The plan is this coming Monday I will have a triple contrast brain MRI. This special MRI not only uses more contrast but it also uses smaller slices thus seeing more. And a special mask will be made specifically for my head. The purpose of this mask is to keep my head from moving around. This is all part of the Cyberknife process. On Wednesday of next week I will have Cyberknife Robotic Radiotherapy brain surgey. Cybeknife uses beams of radiation with pinpoint accuracy to blast the tumor.

The CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and CyberKnife Suitenon-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide.

Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting. In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively. It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.  From : Cyberknife.com

Unfortunately, my PET/CT and Abdominal CT also did not come back very good. In my bones, inlcuding my right 4th through 6th ribs, my spine, my pelvis and my liver all have progression. In my liver, there are a few bigger tumors present measuring 1.3 cm and 8 mm. with multiple hypodense lesions scattered in the right and left lobes. needless to say the combo chemo of Gemzar and Carboplatin stopped working, not knowing if it ever really did. This is the 4th time this year and I’m soooo tired of this. I just want to be stable.

I hate Pinktober. I use to support Pink in October, actually year round but now that I am a ‘Forever Fighter’, a moniker dubbed by Komen, I hate the lack of education, understanding, recognition, whatever you want to call it of what actually kills people with breast cancer. It’s called Stage IV Metastatic Breast Cancer. However, I still go out and support my friends and their survival. I never want anyone to ever have to go through this. So, I guess I don’t hate pink rather it’s just not a color for me. I can’t identify with being a survivor.

Early detection does NOT mean an early cure. 30% of women and men diagnosed with an early stage breast cancer will develop Stage IV MBC. Ribbons don’t help me, Research does. I stand on the sidelines in October and watch the women and men who have completed their chemo or radiation or are NED (no evidence of disease) celebrate their lives, celebrate their finished journey and I sob. I will never get to experience that.  I will never be able to have a baby or a husband, a wedding or buy a house. The only end I have is with my death from this disease that kills 40,000 a year. I still take care of myself, eat right, walk when I can or when it doesn’t hurt so much. You’d think I’d start smoking or drinking more because I’m gonna die anyway right? But I haven’t. Look , I didn’t want this blog post to be a bummer and bring you down but I’m mad. I’m pissed off. It’s National Metastatic Breast Cancer Awareness Day and I’m here telling you about my brain mets. WHY?

My mom flys in on Sunday and will stay a couple weeks to help me. I start a new chemo but not exactly sure what as I am going to see The Breast Specialist again. She is the oncologist in Davis who specializes in breast cancer. Hopefully, between she and The Blood Guy we’ll come up with something that will stop the growth. I’m not asking for much, I just want it to be stable.

 

Be Strong, Be Brave, Be True. Endure.  – Dave Eggers

 

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