Well I really thought I had put this blog to bed over 3 years ago. But fate had other plans for me I guess. The thing with triple negative breast cancer the rate of recurrence is high – however it is high for the first 3 years. If you make it past that you actually are in a far better place than the other breast cancers. Well I’ve always enjoyed being an outlier and I will continue to use that mentality going forward in my fight. I was at almost 4 years to the day that my chemo treatment ended that my body decided it would play the cruelest of jokes.
For those of you just now reading this via Facebook and getting the wind knocked out of your sails, sorry I haven’t reached out to you personally – so much going on, too many people to tell, and so much to process – hence the benefit of these blogs and for me, writing is good therapy.
So the story (sit down for a ride!). Brent and I headed back to the Midwest in the middle of January to do a belated Christmas with all the families. It was wonderful (it really was regardless of the end result). However, I went from the tropics of N. Central Idaho (30’s) to the sub-zero’s of the Midwest (-40’s). It totally reinforced why I moved away. But by the end of our stay I was experiencing headaches like I had never had before and attributed it to the almost 80 degree temperature shift (I mean seriously, that has to mess with you!) By the time we returned home I was experiencing the worse case of vertigo of my life and went in to see my primary to get it taken care of. The physical therapist said I had the most classic case of nystagmus he had ever seen and I dutifully practiced my head exercises trying to get the rocks in my ear back in place – for 2 weeks!!! Nothing was working, during this time headaches and neck pain continued too. The doctor ordered an MRI due to my “history” but really didn’t think that was an issue, and we all kind of felt it was just some inner ear problem. 2 weeks after my first symptoms, I went in for an MRI at the local hospital. The local ER doctor took Brent and I aside into a private room to say they observed 14 lesions and an inoperable tumor on my brain. I will say he was nice but his delivery really sucked ass. I am not beneath admitting a complete an utter breakdown, I called my oncologist immediately – told them I didn’t want to hear words pallative care, I felt too good, I was perfectly fine 2 weeks ago, this wasn’t happening, I wasn’t going down without a fight – NO NO NO!!!!
So the best decision I made 4 years ago was changing all of my care from St. Joseph Regional Medical Center in Lewiston, ID to Cancer Care Northwest in Spokane, WA. They had asked me “are you sure?” “If something happens you’ll have a longer ways to go?” Best. Decision. Ever. My oncologist told me to get up to Spokane immediately, so Brent and I stopped at home, grabbed an overnight bag and headed to Spokane. It is a 3.5 hour drive and we spoke maybe 5 minutes the whole drive. What do you say? Held hands, cried, processed, we were lost in thought. Got to Sacred Heart and they checked me in and got me on steroids to reduce the swelling in my brain and start assessing me. I told them over and over again – I don’t want to hear the words pallative, not going to happen. Although technically what I have is not curative, I still will not accept the term pallative, they are constantly learning and developing new tools, and back to my first paragraph – I’m an outlier, I’m shooting for milestones so I’ll be around to a point where they make this curative – I just read an article where they cured a woman of AIDS!
So while in the hospital they mention they are going to do a bronchoscopy to biopsy the spots on my lungs. Um, what – back the effing bus up. When did you even scan my lungs? I thought you only did a brain MRI? There is SHIT on my LUNGS!!!! OMG things are going downhill fast. So Monday I started Whole Brain Radiation Treatment (which I did for 2 weeks) and then did a procedure. 3 spots on my lung – they appear to be breast cancer which makes the pulmonary specialist ecstatic, but my oncologist isn’t 100% sure so she’s getting them genetically tested. Either way, chemo is on the table – for life. Yep, I’m a lifer baldy (or at least until those cures are developed, and yes – I’m having positive thoughts). Bald is beautiful but fortunately I have a pretty damn cute bald head I’m told and I have never liked my hair, so…..I would rather be bald and alive then have beautiful hair and be dead – trade-offs.
So what’s next. I’m trying to adjust to my new reality. It’s not easy. I admit 23.5 hours of the day I’m upbeat, I’m me, I got this. 30 minutes of the day though – well, shit, why – pisses me off, this wasn’t supposed to happen, I cleared the mile marker – I had plans, I have trips and things to do. I will say if you don’t think you’re loved get sick, wow!!! The outpouring from neighbors (every.single.one), friends, family and co-workers has been overwhelming and ridiculous. That has brought me to tears more than once. The calls, texts, visits, gifts, decorations, on and on. And the unfortunate fact that I do have friends going through what I’m going through that I can learn from is invaluable – learning how to live – yes live, with this diagnosis. Death is inevitable but I don’t plan on it happening anytime soon, there are too many Mexico fishing trips, concerts, hunts, good times with friends to be had to worry about my mortality right now.
So hug your loved ones, pet your dog/cat, don’t stress the bullshit, who cares about the politics – just love and be happy!
I’ll try to keep this updated – for now the plan is I will be starting chemo this week and doing it weekly for at least 3 weeks. My hair has already fallen out because of the radiation treatment. They will do a scan in 3 weeks to see how the spots on my lung are reacting to the chemo and immunotherapy and then spread out (hopefully) treatment to every 3 weeks. In 6 weeks they will do another scan on my brain to see how well the radiation treatment and the chemo/immunotherapy worked on the spots. Any spots left they will bat clean-up with a Gamma Knife. So think good thoughts for me, I will admit I am scared/nervous about the results of the MRI in 6 weeks – the brain is the scary part for me.
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