And the results are in…

 The holidays flew by and wish we could have spent more time with family, but we still had a great time. Lots of fun, food and laughter for sure. And several intense games of Left/Right/Center. None of which I won, btw. I’m pretty sure it was rigged. 

Parker with Grandpa Chuck and Teresa

Ethan with Emery, Emmett and the Grinch 

The Mills with The Grinch 

Hailey and Logan with Grandpa Chuck and Teresa 

All of us minus Kate and her family-damn Covid-with Grandma Sharon 

Us and The Grinch 

I completed my MRI guided Stereotactic Radiation to the lesion we found on my lumbar spine in early December. That was rough-but not as bad as I had anticipated. I had some nausea, and lots of fatigue the week of the radiation, but it was all gone a couple days after I was finished with treatment. The pain I was having at that spot has pretty much gone away-the wet and cold weather don’t help it, but it is bearable. 

I had a repeat CT of my chest/abdomen/pelvis and whole body bone scan done on January 12th and my Oncologist added on a head and cervical spine (neck) CT because I have been having headaches and neck pain. I got my results on Tuesday this week and with the good comes the bad. The L1 lesion we radiated in December has not grown, and shows signs of sclerosis, or healing. My cervical spine shows no signs of bone mets. The rest of my spine all the way down to my pelvis and hip mets look unchanged from previous scans. Except for a small, new spot on my left pelvis. I don’t have any pain there at all so we aren’t going to worry about one new bone lesion.  My lungs still look shitty-thanks Covid and prior radiation. But no lung mets, masses or nodules there. 

The bad news is there is an 8mm lesion that showed up in my brain. My left cerebellum to be exact. The previous reports I could find from KU and NKCH don’t mention it, which likely means it’s new and real. Other than the headaches I was having, I’m not having any other neurologic issues-which is good. The plan is for the Radiologists here to compare the CT to the CTs and MRIs  I had sent over from KC. If they decide the lesion is new (which I’m sure it is) I will have an MRI here and go from there. This likely means brain radiation is next. I will know more in the next couple of weeks and will keep everyone updated. It’s definitely not great news, but it’s not awful. My lungs and liver are still clear, and I’ll take one met in my brain over a dozen. So if you can throw some prayers and good juju up for the MRI to find nothing new in my brain-not that there’s much there anyway-and my husband says this just proves I’ve been crazy for a while…..anyway-good thoughts my way are appreciated. Now to keep myself distracted in the meantime…..

I was able to do just that by heading to KC to see the Wicked performance at the Music Hall with my dear friends. And we loved it!  Such a great story of friendship, and like the words of the song ‘For Good’ that Glinda and Elphaba sing;

I do believe I have been changed for the better
And because I knew you
I have been changed
For good.  

Wicked at the KC Music Hall 

Mandy, Me and Sandra at The Bristol with the gorgeous lights and Chiefs banner in the background 

Me and my baby sis Katie

Of course I cried in that scene.  In addition to the show we had dinner at The Bristol where my sister joined us and it was fabulous!  My trip to KC was non-stop, lunch with my awesome Dad at Corner Cafe, cleared out the safe deposit box at the credit union, stopped at NKCH to get imaging sent and get copies, and visit with some former co-workers-one a fave Radiologist of mine whose husband is a Pulmonologist and man-they are exhausted in healthcare folks.  Kudos to those who keep showing up in the face of all of this. Then I hit Kansas on the way out of town and visited my friend’s fabulous boutique-ShananiGanns- to drop off signs and jumped on I-70 to head East. Then I spent almost the whole car ride back to STL on the phone with another dear friend-sure makes the boring ride go by fast! After the news I got I needed this trip to make my face hurt from smiling and laughing so much with just a few of my favorite people to get me out of the bad news funk and ready for battle.

Again. 

But, it is what it is, and I’ll do what I have to in order to fight this crappy disease. Thanks for having my back! 

I will update when I know more, in the meantime I’m snuggled up by the fireplace getting ready to watch the new season of Ozark and my Chiefs beat the Bills this weekend because it’s too cold to do anything else! 

Xoxo

-K

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!  

Busy Summer winding down

It’s been a whirlwind around here for us, and even though summer is coming to an end (I’m personally hoping for an Indian summer before a lengthy fall) we still have LOTS going on  

Did I mention if we aren’t running around with our hair on fire life doesn’t feel ‘normal’ to us!?!?

Ethan had his foot surgery in June. He did awesome and came home with casts on both lower legs. He didn’t seem to be bothered by them at all and was holding his legs up in the air just like normal in no time at all. Dr Schwend straightened his right third curly toe by taking out some joint cartilage and putting a pin in it. The cast was on that leg to protect the pin and let the toe heal.  The left foot was far more extensive. He had the same pin/joint cartilage procedure done to his third toe on that foot, but he also had a calcaneal osteotomy, Brevis tendon lengthening and his Achilles tendon moved to the front of his foot. 

Here’s some pics- cover your eyes if you’re squeamish at all….

Ready to go home with Royals blue casts!

First cast off for good, left foot x-rayed and checked and we went for red for Chiefs (and the Cardinals) 

Finally got both casts off!

Three screws in there! 

And got my Chiefs orthotics! 

Back and forth to KC for these appointments meant a lot of traveling this summer, but he did well. 

He’s seen a new Pediatrician here as well as and Endocrinologist and Ophthalmologist. More on those visits in my next blog post-it will take up a lot cause there’s lots of news. 

Ethan also got the first of his 2-likely 3-Covid vaccine shots this weekend. And so far he’s done awesome!  I’m not posting this to start a debate or argument. I respect everyone’s right to choose what works best for you and your family, and this is what works for ours. We waited so long-all the rest of us had ours done by May-because to be perfectly honest I was scared to death of it for him. Especially after the reports of males ending up with myocarditis as a result of it. He could not afford for that to happen to him. His heart may not tolerate it and we sure don’t want to do anything to jeopardize that Melody valve we worked so hard and traveled so far to get!  And his cardiologist deferred to his Immunologist to make that decision. We had an appointment with her this week and she put me more at ease and gave me some info to make a good informed choice. Especially with him going back to in-person school in two weeks AND being immunocompromised AND having a congenital heart defect AND just being Ethan…..

We are going to draw his antibodies after he’s fully vaccinated to see if he mounted a response and if not, we’ll do a third booster shot. We may likely do the third one regardless. 

He was a trooper with his shot and got a squishy ball and lunch at Soulard Gyro as a treat. Ok the gyros were a treat for me and Brian! 

He didn’t even cry, and (knock on wood) has had no fever or any side effect so far. His shot was Saturday around noon!  I also feel good about him getting it because we are headed to Florida next week to go to Universal Studios for the week!! 

Some protection is better than none. 

Baseball season has kept Brian busy around here. Though I’m pretty sure there’s not much chance of the Cards having any post-season play so I’ll get my husband back soon I hope. We did make it to a couple of games. The latest was when the Royals were here in STL and we stole the sweep from them!  

It was not a pretty game by any means, and we had a rain delay in the top of the 9th that we left during so we didn’t get caught in the torrential downpour, but it was a ROYALS WIN!  

Let’s not mention the poor showing this weekend when the Cards were in KC….

I’m headed to KC tomorrow for my pre-op appointment with my Plastic Surgeon Dr Butterworth. As soon as we get back from vacation I’m headed to KC for surgery on September 1st. This will be the lymphovenous bypass and lymph node transfer I blogged about in a previous post. I’ll post more this week if I find out anything new. 

Hailey is doing well in PT school-finishing up her first full year with finals this week and then flying here to STL to fly to Orlando with the family.  We are so proud of her and she got extremely high praise from one of her Professors on her last Practical. Said she did everything perfectly and spoke to the patient like she had done this all her life. Well…..she kind of has, only her main patient never spoke back-just demanded Minion movies and King Julien. 

Parker has been working as Security Surveillance at Argosy Casino and really likes it. He’s got something in the works for his future career path and we are thrilled to see how it turns out. More on that later, I don’t want to spoil it.  

T-6.5 days to vacation and I cannot wait. Other than the Sago family Reunion in Alabama in July-we haven’t gone anywhere else this summer and obviously no where last summer so it is much deserved and needed!  I will share lots of pics-we are going with Brian’s brother Kellen and his family and this is bound to be an adventure. 

Much love, hugs and prayers. 

Be safe and be kind

-k