Pink October

 October rolled around and once again I tried to share my story as awareness and education of my Breast Cancer journey.  If you followed along my FB updates, you got to read a Cliffs notes version of the last 9 years. 

Really condensed. 

And how ironic that in the month of awareness I find out I have progression of my metastatic lesions. Namely to my lumbar spine (L1 most markedly) ribs and right pelvis/femur area. 

My Oncologist recommended Radiation to the L1 lesion to zap it away hopefully and for pain control. So today I met with my new Radiation Oncologist. 

I knew the day would come that I would need an MRI on some body part because of this damn cancer. I just figured it would be my brain and not my lumbar spine. Ahem. 

I’ve had an MRI before; brain, knee and breast. And seriously did not enjoy any of them. But apparently I’m a glutton for punishment because I chose to do SMART treatments on my spine rather than conventional radiation therapy. 

SMART stands for 

Steriotactic

MRI guided

Adaptive 

RadioTherapy 

This means I will be doing targeted radiation to my spinal lesion under MRI guidance. And this is a clinical trial. The MRI guidance is to see if they can deliver targeted, precise doses to the tumor without hitting, or sparing, as much of my spinal cord as possible. Each session will last about an hour (yay!) and I will have 5 of these treatments. 

I really, really like my Radiation Oncologist Dr Badiyan.  I’m sure I made quite the impression when I told him I was claustrophobic and hated MRI but in the name of science and education and helping someone else down the line and preserving my spinal cord I would suck it up and choose the SMART Clinical Trial. I also told him my breast MRI required an Ativan and Moscow Mule to get through and he assured me they could hook me up with the Ativan, but I need my own bartender for the Mules. That was after he almost fell off his stool laughing. 

I have to get an MRI of my spine with contrast first and that is happening Sunday-yes, in 4 days!  So I’m meditating and preparing for that already. 

I’m not sure when the actual treatment will start, but I’m guessing next week sometime.  And we have to go down to the BIG Barnes Jewish Campus for that. 

That’s what we know so far.  

Send me your prayers for calm and patience and to get through all of these MRIs. Oh, and that we can find the good ginger beer we need for my Mules….

 

 

Summer Vacay, surgery, & back 2 school

 Who could have imagined a few years ago that we would be taking a summer vacation with Brian’s brother and his family!? Not us!  But here we are and it happened. 

All of us + Logan and the Mills headed to Florida and Universal Studios for a week. And it was awesome. We had an incredible AirBNB that slept the 10 of us comfortably and had our very own pool. And super reasonable cost. Happy to share with anyone interested. 

We rode lots of rides. And due to the fact that school was already back in session when we went-we never waited longer than 15 minutes for any ride. And the 15min wait was for the super popular Hagrid’s Motorbike Ride. Which this momma rode and though I almost had a heart attack at one point, I would def ride it again. The bald kid rode lots of rides and got to get up close and personal with his favorite character King Julien!  My heart soared when we rounded a corner and he heard the theme song. He was delighted and I’m pretty sure I cried happy tears. 

Hailey and Logan rode all the upside down, twisty-turny, backwards, fast AF rides and drank gallons of butter beer. Parker hung with me and the bald kid and partook in some of the less thrill inducing rides. All of the kids, and the Mills family, were so helpful with Ethan, I was more relaxed than I had been in a long time. 

The flights were good-other than SWA destroying Ethan’s wheelchair on the flight home. They actually handed us a couple of pieces off of it when we landed back in STL. Uh, oops?!  So now we are getting a brand new chair for him we expect to have end of November.  

We had such a perfect time just relaxing with the family and laughed about as hard and often as possible that we are already planning our next Family trip!  

September came and with that my surgery on my lymphedema arm.  I had a lymphovenous bypass and lymph node transfer at KU with Dr Butterworth.  It went well and so far showing some fabulous results!  

I’m not sure how it will fare long-term, but my surgeon and I both are pleased with where I am at now!  It can’t get any worse-so if this is status quo I’m good with that too!  

Back to school….

I don’t even know what to post here. All I will say is that we definitely miss Maple Valley. A lot. 

It’s just not the same and I’m trying, but it’s getting harder and harder.  I’m not even sure they are working with Ethan daily and I’ve become the squeaky wheel but I’m beginning to think they don’t even care to oil it. Guess I’ll just have to get louder. 

As far as new docs go-all of the ones we have gone to here-for me and the bald kid-are excellent!  I don’t think I could be more pleased!  And that’s saying a lot! 

Ethan is scheduled for his eye surgery to correct his strabismus (wandering eyes) first week of December. And during that surgery they will measure his eyes for a refractive surgery with implant at a later date to correct his near sightedness. He may not ever have to wear his glasses again after that surgery. 

And his new pediatrician is a dream!  She’s not Dr Russell, but she’s just as fabulous. 

And his Cardiologist?  Dr Kaine in disguise. 

Again-I cannot verbally express how thrilled we are with his care here. He’s in great hands. 

And my docs-just the same. Haven’t had one yet that I didn’t like or felt like I was wasting their time. Unlike how I was beginning to feel with my Oncologist in KC. 

It’s been a busy summer that ran right into fall before we knew it and I’m looking forward to spending the holidays here in STL. 

We miss our family and friends in KC, and for sure our Royals. 

But I’m so thankful for the memories we are making here!