Such an exciting time for our city-especially the million that showed up in freezing weather for the Victory Parade! Including my children and my poor husband who worked P&L many, many hours last week.
Woo-hoo, vacay paid for!!!
I started my chemo shot and pills and the shot to help strengthen my bones. The combo of all three sent my body into a tailspin-nausea, fatigue and no relief from my butt mets. But after a few days of fluids, switching up meds-now I take an anti-psychotic drug called Zyprexa off-label for the nausea (my husband says is appropriate) and it seems to be working. I now take my Kisqali at night and 30 min later take the Zyprexa and it’s working-I can actually sleep and not feel like I have a brick in my stomach for hours.
There has even been a little relief from the butt bone mets-unless I sit on my hiney on a step stool for hours rearranging the pantry.....not really relief, it just hurts differently. Now, mostly if I sit, I have to shift all my weight to my right butt cheek instead of my left and it helps. Standing and walking isn’t too bad. But hopefully that will all be taken care of this Friday with my Cryoablation.
Happy Valentine’s Day to me!
Today I met with my new oncologist Dr Lauren Nye at the KU Westwood Campus. And I really, really like her. Some of you are asking why I switched Oncologists, especially within the same system.
I do love Dr Sheehan, but since my diagnosis of the MBC, I have yet to sit down and have an appointment with her. All communication has been through 4 different nurses, which, to be honest, kind of just pisses me off. I’ve started a whole protocol of drugs, had an ekg and have had to do my own research and pursue getting the Cryo done all without having talked any of it over with her. I’ve been her patient for 8 years. Apparently I’m just another number there.
Well, I am a number, but not in the way I’ve been treated at that office.
I’m number 48. My young age
I’m number 3. Mother to that many children
I’m number 1 of 8 women who get breast cancer
I’m number 1 of 3 of those women who end up with MBC
I’m the number 1 wife to my husband. (Well....really his #2, but we don’t count that mistake)
And I’m gonna be the number 1 bitch who makes this cancer fight the hardest fight it’s ever seen to beat me.
And that’s where I wasn’t getting the support and answers I need.
Communicating between 4 nurses to get questions asked is unacceptable. So I switched. Because this is my fight and I refuse to fight healthcare providers to get what I need.
Dr Nye is not changing the drugs I am on, she is, however, going to keep giving me my Lupron shot for estrogen suppression, which Dr Sheehan had decided to stop doing.
She is also very knowledgeable in the genetic/genomic realm of breast cancer.
I am BRCA negative, we did that test back in 2012, but I have not had any updated gene testing since then. My spitting game was on today as I filled the little tube being sent away for that gene testing.
The testing will tell us if my cancer is somehow genetic in form or has a connection with another type of cancer like colon. There is a link between the 2 and we need to make sure I don’t carry that gene, and if I do, get that addressed. The testing will also help Dr Nye know if I need a different protocol of drugs at some point.
Insurance does not cover the updated gene testing-so the lab will do some testing and then if they need to do more they will call me with a total if I choose to proceed. Well, with kids and especially having a 23 year old daughter, we will figure out a way to pay for whatever it is they need to do.
I will be getting a bone scan and Chest/Abdomen/pelvis CT every 3 months from this point on. Ironically there are no recommendations to do follow up scans until you’re Stage IV with one foot in the grave.....
These are to track the areas we already know have metastatic disease and to ensure no new ones pop up. The drug protocol I am on right now has been shown to prevent disease progression for 18-24 months. And if they stop working, there’s always clinical trials and new drugs popping up every day. This is also where the results of the gene testing can come in handy, as we can do some genomic testing specific to my tumor type.
She’s also going to ask Dr Custer to do a bone biopsy on Friday when he does my Cryoablation. I asked because my recurrence in 2018 was a little different make up than my first tumor and I’d like to know if this is any different. She said she’s gonna ask really nicely to see if he will.....cross your fingers......
She also recommended a referral to an Oncology Psychiatrist-right now they are about 3 months out with making appointments so I’m on the list. It will help to talk to someone who has no dog in this race, and can be objective.
We’ve also cleaned up our eating and doing about 80/20 whole food and plant based eating. It takes a little while to prep-but I sure feel good after eating the meals I have lately. My bone density study shows some mild osteopenia so I have to take a calcium supplement, but no more than 1000mg per day in pill form, so I need more through my diet. And I love me some homemade hummus that my husband has been making so I’m good with that ‘prescription’.
I was really impressed with Dr Nye and her nurse who walked me through all my upcoming appointments and what to expect in the next few months. My appointment was an hour long, I never felt rushed.
She did a more thorough history than I’m pretty sure I’ve ever had. I will be seeing her every month for at least the next year.
I’m glad I made the switch and even though my protocol had no changes, my heart feels like I’m at the right place.
I was treated like a number here too, only it was like I was their number 1.
Much love,
K
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