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

Bittersweet End of an Era

 Today was bittersweet as we saw our favorite bald Dr for what is likely the very last time.  

Dr Kaine has been with us since the beginning. 

Literally. 

He first saw Ethan when he was days old with a  ToF/WPW diagnosis, and here we are 17 years later. 

An amazing Cardiologist with the absolute best bedside manner and personality. 

We got a recommendation from him for a new Cardio at St Louis Children’s, but there truly isn’t anyone like Dr Kaine. I did promise him I would have an open mind and he assured me this new Dr would be fabulous for Ethan and appreciate my knowledge and advocacy. 

I’m pretty sure he was saying he has thick skin and will be able to handle me as well as the bald kid, but that’s just my guess

(Ha-ha!)

As for the bald kid’s heart:

Ethan’s Melody Valve is still working as perfectly as it was the day they put it in almost 8 YEARS AGO!!  Wow-I can’t believe it’s been that long.  His Right Ventricular function is working well, and his pulmonary pressures are high end of normal-which is all normal for Ethan. 

E’s aortic, mitral and tricuspid valves all show mild leakage-which is unchanged from his prior years echos, so all good. 

Dr Kaine chuckled when he told me all this because he said there’s no way you could look at his echo today and have any idea how bad his heart was in 2013. 

Or have a clue how sick he was. 

Let alone begin to fathom that had we not gotten him to Boston when we did that he would not be with us today. 

He hugged Ethan and said goodbye with these words “we’ve been through a lot Buddy and I’m honored to have been a part of your journey. “

And by then I was a blubbering fool. 

No, Dr Kaine, we are the lucky ones to have you in the bald kid’s corner for the last 17 years. 

Ethan doesn’t look thrilled in this pic-but it’s just because his allergies have gotten the best of him lately and we forgot to put his eye drops in this morning. 

I switched my treatment to the Siteman Cancer Center at Barnes Jewish here in STL. Actually, my new Oncologist is Ashley Frith and the Siteman location she works out of is only 7.5 miles from our home. I’ve had 2 appointments with her and am really pleased. At this point she has no plans to change my treatment course, because it’s working! Other than adding in a B12 injection so that now I get one every 2 weeks. 

Tuesday I got my port flushed, labs drawn, saw Dr Frith, got all 4 of my shots and had X-rays done of my lower back, pelvis and hip. It took longer than that to just get my labs drawn at KU sometimes! 

I am getting my 3 month CTs and Bone Scan this Friday so fingers crossed we see no progression. I’ve had a lot of pain across my lower back and sacrum/pelvis area, hence the X-rays this week. They showed nothing new so hopefully the scans show the same. 

Fortunately KU and BJC/WashU share the same electronic medical record system so I was able to sign a release and give my new docs access to all my old records.

I’ll miss KU, but am happy not to be making the 6 hour round trip twice a month anymore! 

I also have an appointment tomorrow with a lymphedema Occupational Therapist and week after next with a plastic surgeon to see about having my lymphovenous bypass here instead of in KC. 

Speaking of surgery......

Ethan is scheduled to have some foot surgery next week. 

Here’s what Dr Schwend is going to do:

Left Brevis tendon lengthening

FHL (Flexor Hallucis Longus)to Achilles Tendon Transfer

Calcaneal Osteotomy 

And snip the tendon under his curly toes  on both feet and put a wire in to straighten those out!  

It’s supposed to be an outpatient surgery, we’ll wait and see if Ethan has other plans, and he’ll have casts on both feet for 6 weeks post-op. 

Since his spine surgery last summer, his Brevis Tendon has tightened and pulled his left foot into a permanent flexed position and pulled his heel out laterally. It has made it near impossible to get his AFOs on him (foot braces) and even harder to get him to walk with a foot that stays flexed. 

All of this will relax that foot and the calcaneal osteotomy will put his heel bone back under his shin bones. 

So we will be in KC next week from Sunday the 6th until we feel comfortable enough to bring him back home with us. Hopefully just a few days. 

But again, this IS Ethan. 

And now that we’ve had our new PPO insurance for just over a month, our deductible has already been met and our out of pocket max will be met after next week.  So we’re set until January 2022! 

Here’s to hoping we don’t have to use it for anything else the rest of the year! 

Oh, and if you haven’t watched the Friends reunion special yet-do it! I thought it was excellent. I’m actually binging all the old Friends episodes now. I really just play them while I paint signs and walk at the gym for a good laugh. 

And some good rainy day movies we watched recently were:

“Those Who Wish Me Dead” with Angelina Jolie 

“Nobody” with Bob Odenkirk

“Wrath of Man” with Jason Statham and 

“Without Remorse” a Tom Clancy story as an Amazon Original. 

In case you’re bored. 

And like movies as much as we do when the weather sucks. 

I’ll keep you all posted on my scan results and E’s surgery! 

Much love and big hugs,

K

Bring on Spring

I hope everyone is doing well and staying safe.  

Call me when it’s sunny, cause I’m over this dreary weather! I’m so ready for spring and sunshine, because it’s so hard to have any motivation right now. 

 We are all moved to O’Fallon and settled in. Well, minus any living room furniture because it’s not supposed to arrive until end of March. But we’ve got some fancy rocking lawn chairs that are pulling double duty as living room recliners that work for now.  

With the crazy inflated real estate market right now, we opted to rent rather than purchase. We found a lovely 2 bedroom/2 bath apartment that’s almost as big as our first home, complete with granite countertops, LVT flooring and a master bedroom bigger than our last!  

And what’s even nicer is that if we want to pick up and leave town for a weekend (or a week) all we have to do is lock the doors and go. 

Plus, we are 5 minutes from Brian’s Mom and 15 from his brother. We’ve spent a lot of time together with lots of laughs.  I can’t wait for the weather to warm up to be able to take some day trips with the niece and nephew and do some fun stuff! We have City Museum, Grant’s Farm and The Butterfly House on our to-do list. 

Ethan went to in-person school for the first time in almost a year!  His new school only has 12 kids in attendance so they’ve really been able to social distance. Aaaannnnddd he was still exposed to Covid! Argh!!  Oh well, it happens. And it was a risk we were willing to take with such a small classroom-4 kids!  

Based on the pic they sent me from his first week, he’s having a good time!

And right when we were one day from being out of quarantine, guess who spiked a fever?  

Fortunately our little Covid faker was fine the next day, and has been fine since, so who knows?!?  

He can go back to school next week and they’ve had 2 inclement weather days plus a no-school day this week so he’s not really missed much. We are making daily phone calls to nursing companies with ZERO luck. We were actually put on a ‘waiting list’ for our area with one company. Brian will eventually be going to work and I am gone at least 2 full days a month for appointments in KC, so we need to secure someone before that happens. 

Before we left KC I was having awful pain in my left butt cheek-where my biggest metastatic lesion is.  But my latest CT Scan showed no new disease there and my tumor marker is back well within normal limits!  I have to believe the pain is weather related, because once I started really keeping track of the pain in my journal, I realized it was always worse when we had precipitation. More so with rain than snow-but still some dull aches when it snows. 

I am still really struggling with notable fatigue on a daily basis, which is really frustrating.  Even though my counts are all really high and good, my Onc had me take an extra week off my meds before starting another cycle. Since that didn’t really seem to make a big difference in my level of fatigue, they are thinking it’s a Covid side effect. Yay!  I’m well on my way to being called a Covid ‘Long-hauler’. Not the title I ever wanted. We are trying to coordinate me getting the vaccine on my off week between med cycles, but it’s not available for me just yet at the Cancer Center. 

I have passed one full year of treatment for metastatic breast cancer-actually 13 months since diagnosis!  Woo-hoo!

Hitting that 1 year mark is a victorious but bittersweet feeling. Knowing most MBC patients have about a 5 year life expectancy, I’m thrilled to have hit 1 of those years, and scared I only have 4 left. 

But my Oncologist is so optimistic with my treatment, and being that I have a low burden of disease, that I refuse to let it consume me.  Now that I’ve passed a year on treatment, I’ll keep getting my labs done every month, my CTs every 3 months, Bone Scan every 6 months but I’ll only see my Onc every third trip/alternating with my Onc NP. But we communicate a lot through my patient portal-and I get answers to my questions quickly, so I’m kind of relieved to have one less standing appointment on my calendar every month. 

I met with my new Plastic Surgeon, Dr. Butterworth with KU, before we left KC also.  I really like him and he’s already got me on the schedule for surgery for my lymphedema-it’s not until September 1st, but that’s ok! He’s going to do a lymphovenous bypass AND a lymph node transfer to help with my lymphedema. Nothing he can do is considered curative. What’s done is done. The goal is to keep it from advancing any further to the point of limited use of my arm, and to give me a little relief.  I am still using my ‘Michelin Man’ pump 2x daily, wearing compression sleeves 24/7 and seeing my PT for manual massage every trip back to KC. All of these things do help, but I’m looking forward to not spending the majority of every day working on my arm. 

Hailey is back in Texas and doing well. She’s planning to come visit us over her next break from PT school in May. 

Parker had 2 roommates move in after we moved out, and is doing well-thrilled to be on his own finally. Though he has called and text me quite a few times since we left-sometimes just to chat and other times with recipe questions.  At least he’s cooking and not eating out for every meal!  His company has shut down for the next few weeks due to Covid production problems so he’s going to come spend some time with us soon!  I think he misses the bald kid more than anything. 

I don’t even want to comment on the Super Bowl, but I believe our KC boys will be SB contenders for many years to come, and in the meantime the city will be distracted by Baby Girl Mahomes before we know it.  That, and Royals Home Opener is only 50 days away!  Bring on baseball!!

Just a quick update about the latest in our lives. 

We are currently loving the Discovery + network and I’ve got to catch up on my Good Bones, Restoring Galveston and NEW Fixer Upper episodes, so back to my besties Chip and Jo I go....and to help Brian put together our new small writing desk with eleventy hundred screws.....

Love, hugs and prayers,

K