I’ve had several appointments and lab draws since my last post so I figured it was time to do an update.
My genetic tests came back with no genetic predisposition to breast cancer, and no link to any other cancers often seen with breast cancer. I’m just one of the lucky 1 in 8. And one of the 3 of those who end up with metastatic breast cancer. I’m ok with not having an explanation or reason why this happened because it means I don’t have a gene that I’m passing on to my daughter.
My new oncologist got worried that we would have to stop my Kisqali because I had a couple of EKG’s that showed QT prolongation, or an abnormal heart rate. But we lowered my nausea medication dose (it can cause it too) and so far, so good. I get to stay on the medication that will be the most helpful for me.
I met with Dr Custer at my one-month follow up from my Cryoablation and I’m still pain free in that hip! I don’t need to see him again unless I have another area we need to ablate. My insurance denying the $40k price tag saying it’s ‘investigational and experimental’ is a whole other story......
We got my first tumor marker results back since I started the chemo and had the Cryoablation and it dropped 29 points!! Since the Ca 27-29 is subjective for soft tissue mass recurrence (mine never changed when we knew I had a 2cm mass) but seems to be pretty accurate in tracking bony mets and their response to treatment.
I also had my first CT and bone scan since starting the regimen I’m on and I’d be lying if I said I wasn’t a little anxious. But, it shows
NO NEW AREAS OF METASTATIC DISEASE!
All of the areas we knew of on my thoracic spine and pelvis are stable. They did show more sclerotic than my last CT but that can happen when they are responding positively to treatment. With my dropping tumor marker and no new disease, we have to assume the meds are working! Good news for sure!!
Now in the midst of all this Coronavirus pandemic, I’ll admit I’m a little freaked out. My white count hovers around 2.9 on a scale of 4.5-11 so I’m considered neutropenic and susceptible to infections. But other than my crappy arm, I’ve felt better than I have in months recently. And short of using up all my paid time off until this blows over, of which I don’t have a lot to begin with, I’m going to work. Or hit the lottery and stay home. I wear my mask and protect myself and have had some great coworkers help me out by letting me have limited direct patient contact and being the button pusher. I mean, after all, isn’t that really all we are!? If we end up with a positive case at the hospital or close to home, I’ll reevaluate going to work.
Ethan’s school is closed until April so he’s home in his bubble for now too. His spine surgery is scheduled (for now) for June 30th. So we have to keep him as healthy as possible for that.
Since Brian and I have no choice but to go to work, I can’t stress how important it is for everyone to follow the recommendations for social distancing. And please don’t go to the ER right now to request being tested. Stay home. And think about your family and neighbors and your co-workers. These are unchartered waters we are all in and we’ll only get through it together. We’ve likely not seen the worst of it here and that scares me. The CDC changed the recommendations for us wearing N95 masks to regular surgical masks. That doesn’t mean the risk of us becoming infected is any less-it means hospitals don’t have the needed supplies, and we need to save what N95 masks we do have for more invasive procedures.
Again-stay home and guess what? You don’t need a mask! Leave those for the healthcare professionals caring for your loved ones.
These will be trying times for us all, emotionally and financially. So remember to support your local small businesses. Grab a bite to eat to-go from a family owned restaurant-we have tons of those in KC to choose from.
Please stop buying up all the toilet paper and hoarding food and supplies. There are many folks on a fixed income who can’t afford to do that and need to go to the store weekly for the things they need. Don’t be the asshat who does that.
Going to store or pharmacy? Offer to pick up something for a neighbor or family member who is at risk and can’t make those needed errands.
Wash your hands and cover your cough.
But most of all?
Just be kind.
Much love,
K
