What A Difference A Week Makes

 Hi Friends and Family -

Here we are, the last day of May - can you believe it? Time sure does fly, that's not just a saying...that's for real. 

Tomorrow, June 1, will be 2 months since we first met with my oncologist and hear him say, "I think this is your breast cancer metastasized to your bone".  In some ways, it's hard to believe it has been 2 months already, and in others, it feels like yesterday. 

From day 1 (probably from birth), I've been complex. I've lived a somewhat complex life in my growing years and beyond at times, and this breast cancer since 2010 has been a little out of the norm - a little complex. 

In my primary cancer in 2010 (remember....if you're metastatic, the original breast cancer is called "primary"), my breast surgeon at the time, Dr. Stocks, said "this is Sheryl Crow style cancer - you have one little tumor...we'll do a lumpectomy and radiation likely and that is it."  Well...nope. I ended up having 2 tumors, one was hidden behind the other, and it was also in my sentinel lymph node under my arm, so all my 11 lymph nodes were removed. Then, my Oncotype score, which is a test to measure recurrence rates with and without treatment, and is part of the mathematical equation to determine a treatment plan. That's when chemo was added - because the score was 22 (too high). So, I had a 22% chance of recurrence and by doing surgery, chemo, radiation, hormone therapy, I reduced the recurrence rate greatly.  It all worked for 15 years, but it was a little complex....I didn't even realize that at the time - I felt I sailed through it all pretty well, but did not tolerate the Tamoxifen (hormone therapy that blocks estrogen) well at all.  My joints hurt all the time and I was uggghh.  

Anyway, that's a little background on complexities and me.  

Fast forward to now...yep - it's complex just because it's back and in my bones. Mets is complex to begin with for everyone. There is no cure....you are always shooting for NED (no evidence of disease), and meds often change if/when one of them stops working...which happens pretty often. 

Last week was a good week for me for a major reason. I had met with the ANP, Jamie on May 20th and felt so good about the exam, conversation and especially the referral to the oncology psychiatrist and integrative medicine and she was going to work to get the "chemo class" scheduled that I MUST take before starting Ibrance (had not heard a word about that and was not happy about that). I felt a major light turned on from that visit, and I just started to make myself walk right, and I felt good! I felt like things were moving along with my care team and that did alot of good for my mental side. 

Now, we had Memorial Day in there, so I didn't expect things to happen fast with appointments. On May 27, I had my integrative oncology appointment virtually with UNC Chapel Hill and that was GREAT...I got a lot more info on the pillars of integrative wellness to incorporate, and I have a good plan. I'm on an anti-inflammatory mediterranean diet and that is right up my alley....all those foods I love anyway and kind of gravitate towards naturally.  I did give up the nightly Tootsie Rolls....haha!  Chuck is doing this diet alongside me - willingly!  Well...it's really not a diet per se, let's just call it Nutrition Attack Plan. 

By the 28th, I was feeling really anxious about seeing the psychiatrist, I'm not ashamed to say - I know I need it. So...even though it was only 8 days of not hearing anything about this appointment, to me I was hypersensitive anyway, and that felt more like weeks and weeks to me. I kept looking in MyChart to see if it was on the schedule yet...is it on the schedule yet...is it on the schedule yet?

While digging into MyChart, I come across my $21,000 CARIS test (I didn't pay that, but that is market price). CARIS is AI powered molecular testing that identifies all the markers in my cancer tumor to determine the best treatment paths. If you want to read about this - go HERE.  The test had been there since May 20, but it was hidden in my Surgical Pathology Report. 

The big news from CARIS: 

My HER2 status has changed from NEGATIVE to POSITIVE. What that means is -  HER2 is a protein that helps cancer cells grow. When breast cancer is HER2-positive, it means the cancer is more aggressive It’s not great news, but I'll learn more after my appt. with Dr. Kritz. 

Ki-67 is a marker that shows how quickly cancer cells are growing. Mine is a score of 22%, which means about 22% of cancer cells are actively dividing, which is considered moderate growth. It’s not the slowest, but it’s also not highly aggressive. This score helps doctors choose treatments like Ibrance, which works by slowing down cell growth in cancer

I did not love that news and I didn't love that I didn't hear this news from my care team, but I guess that is the world as it is - technology and MyChart. I usually always want to see tests first in myChart, and I know not to go down the rabbit hole until I talk to my Dr. but....that's not always easy to do and I guess it's natural to feel anxious immediately about that news. 

I'm still having the pain in one quarter size spot in my femur and my voice has gotten worse...it really goes on and off at times....I sound very Bonnie Raitt and raspy. 

So, I sent messages on MyChart to ask about all these things - again (have already done that once with stuff)....and let me tell you, many team members get involved and interact in the messages, so one person might answer one of your questions, and another person answers another part, and then generally (for me) there are the BIG questions remaining that I have to stay on top of all the time to get try to get answers. It can go on for days.

So, finally after continuing to advocate to get answers, here's the plan:  

June 4: Appointment with oncologist about femur and voice

June 11: Psychiatry appointment and START IBRANCE

June 24: Appointment with oncologist to monitor effects on blood counts from Ibrance

July 7: Another appt. with oncologist to monitor effects on blood counts from Ibrance

Starting the Ibrance, and adding that into my regime of Anastrozole is worrying the crap out of me. The side effects can be a real doozy and for the first 2 weeks, I have to be super careful about being around anyone that could be sick, or getting into crowds.  Here's more on the side effects

In other news, we are packing, organizing for the move, planning all the things that will happen in the new house before we move (garage floor, painting, tile, wallpaper, etc).  This is why I chose Ibrance to start June 11.  I'll be on that 21 days, off for 7 days.  During the "off" days is when I will feel the best, so I timed it for the move. 

So that’s where we are. Honest. Hard. Hopeful. And not giving cancer any more space than it deserves.

Thank you for loving us through it.

Chill