My brain is working overtime, which is exactly what it shouldn’t be doing.
My tumor counts came back stable (not what I was expecting, I really wish they would come back in time for my appointments!), so I started to second guess the Xeloda/Tykerb decision. Most of the second guessing has been happening at 3:00 AM. My brain running over and over, what if this is the wrong choice? What if my body becomes unstable? What if I have a bad reaction? What if I can’t get into a trial… what if?
I won’t have access to Perjeta once we take it out of my regimen. It is this obnoxious world where insurance makes your medical decisions, not your doctor. It is an awesome drug. My regimen of Taxotere/Perjeta/Herceptin got my tumor counts back into normal land and my body stable. I went from tumors popping up everywhere within a couple of weeks to most of my tumors barely glowing in the PET-CT scan after just a few infusions. I had a tumor in pretty much every vertebrae in my T-spine (every time I see my swiss cheese spine I am amazed how well it is holding up, because it ain’t easy, being cheesy). Perjeta is a safety blanket, I want to hold onto it and hug it close.
My brain is “seeded” though (which means I have little floating cancer cells and ones that have made homes who knows where). I had 4 tumors that got radiated, 4 in the “most likely pile” and we are pretty sure my tumor counts are indicative of pretty much just brain activity. My HER2+ tumors seem to be really good at taking up residence wherever they please. Everything in my heart says “slow down the brain mets and get a HER2+ medication in my brain ASAP!” I responded so well to Perjeta in my spine, I am hoping upon hope my brain and Tykerb can be best friends (at least that is what I am telling myself at 3:00 AM).
We did my final round of Perjeta and Herceptin on Friday November 27. It was a weird feeling because I am hoping upon hope that I won’t have to set my foot in the infusion room for a long time (if it works, you can stay on Xeloda/Tykerb for very a long time and some people tolerate Xeloda very well, and since it is all in pill form I don’t have to have infusions).
I have been stocking up and prepping to baby my hands and feet to try to prevent “hand-foot syndrome” which is a side effect some people get from Xeloda (your hands and feet get very red, blistery and peel). Cotton socks and gloves… Henna (my friend recommended it, I will try anything – plus there are studies!).
I have also been battling back and forth with insurance companies for weeks and it finally came down to my insurance company HAS to by my primary since I am the named insured. I don’t know why Mike’s insurance insisted that they could be, but oh well. A million headaches later and they can’t pull my hospital into network until they become my primary – but it is still an option later – so now I know they will pay for my doctor if/when I time comes they have to be my primary insurance.
My insurance has been so amazing that I have a hard time switching unless it isn’t financially feasible, so, for now, we keep my insurance (which actually saves us from paying an extra deductible and max out of pocket during Christmas season). Mike’s is my backup, and we move forward. Once that was figured out we were able to get my prescription worked out and in the mail. My Xeloda and Tykerb showed up yesterday. So I started taking it!
We found a puppy! We decided to get a puppy many months ago and we had been on a waiting list with a Pomsky breeder, I hadn’t heard back on what was going on with their litter and I was getting worried. A lot of breeders are breeding for Christmas puppies and I managed to find one locally that we got pick of the litter and Mike got to hold, hug and meet the puppies before choosing his little Kira. So now Kira lives with us (she has her own Instagram: @pawsforkira since am a geek like that). She is adorable and has brought many smiles and a lot of sleepless nights. Mike was up with her the last two nights so I could sleep.
Last, but not least, my social security disability approval came through! My disability insurance keeps checking up on me for some weird reason – which has been adding to my stress. This takes a huge load off of my chest. So weird and sad that getting social security disability would be something I looked forward to so much. *sigh*
So yay! New puppy, new medications (cross your fingers), disability is figured out AND insurance headaches are figured out. All of the things compounding causing me stress and anxiety are slowing down, now hopefully we can just focus on treatment and see if maybe this new regimen makes a difference in my brain and body.
Once Kira can sleep through the whole night we might all get some sleep around here!