Living life….

 It has been way tooooooo long since I updated the blog and you’d think being retired I’d have all the time in the world 🤣. 

I’ll do a quick catch up:

•shoulder issue: argh! (Insert lots of cuss words here) humeral head is dead. D E A D. Loss of blood flow, all the good stuff. First surgeon wouldn’t even consider doing a shoulder replacement because I’m ‘terminal’. I mean, aren’t we all??? Don’t we all die??? Ahem. Second surgeon says sure-let’s do it. But….I’m busy and fall is my busy sign making season and my sister is getting married, etc etc. so it’s being scheduled next week for January. Then I get to recover in the warmth of my home with no painting to do. 

•MY BABY SIS GOT HITCHED! Congrats to Katie and Aaron and my niece(s). I got two new ones! And a wonderful new family and group of friends came with them. It was an incredible weekend of love and laughs with lots of distant family and only a little drama (ha ha!)

Katie and Aaron Eckerberg

Family

My two oldest 

  Beautiful bride 

Katie and the bald kid 

My sisters 

•Mexico!! 🇲🇽 Katie and Aaron planned a “Framilymoon” to Puerto Vallarta in late October for some friends of Aaron’s who couldn’t make it to the wedding and some other family and friends and we were thrilled to join them. 

Our resort was lovely-the beach was great, food was awesome and cocktails flowed freely. (Literally)

We relaxed and I read a whole book on the beach! All by myself with almost no interruptions!  We thoroughly enjoyed spending time with my niece Abi and her boyfriend Owen. Abi has grown into such an amazing young lady and we adore Owen.  I hit the spa for a much needed massage, Brian and the guys hit the ocean for a fishing trip, and then we went to swim with the dolphins and sea lions-which meant I checked something off my F*ck Cancer Bucket List ✅

The Eckerbergs 

Swimming with the dolphins 

In my muumuu headed to the beach 

My sis 

Colter and Stephanie and boys 

Dolphin swim 

Dinner at Blue Shrimp

On the beach 

Fishing in PV

 

Cassandra the Sea Lion

Angie and Gary

Goofballs 

Angie and Gary 

Me and the dolphin

My love 

•speaking of October….I made it through another one with Stage 4 Breast Cancer. If you followed my social media stories I shared my journey and lots of info on breast cancer and metastatic breast cancer. Other than that, I refuse to give it anymore of my time!  #nottodaycancer 

#FUcancer #dontignorestagefour 

•November: what can I say…. My husband got a phone call from a dear friend who had an awesome opportunity for us to check another bucket list item of mine off and asked us to go to Paris and Amsterdam with them!! After a frantic rush to ensure the bald kid was going to be taken care of and all that entails…..(you have NO idea unless you’re a part of this crazy ‘special’ club)  we said YES!  

And off we went. 

Paris: the Eiffel Tower, Arc de Triomphe (did you know there are stairs and a tunnel that takes you UNDER the insane traffic circle to get to the Arc? Yeah, us either 🤪) 

The Louvre, shopping, walking, dinner cruise, Jim Morrison’s grave, The Seine, lock bridge, Notre Dame, macaroons, crepes, and lots and lots of wine (and beer and mimosas…)

On our way 

Jim Morrison’s grave

Me and Mona 

Venus de Milo

Aperol spritz 

The Louvre 

Wine, of course 

The Eiffel Tower

Mimosas and crepes 

Lock bridge over the Seine

The Williams 

Notre Dame 

Me and Colette 

 Base of Eiffel Tower 

The Williams and Mona

Paris finest 

Arc de Triomphe

French macaroons

The Louvre

Arc de Triomphe 

The Eiffel Tower

Then we took a train ride to Amsterdam…we accidentally tried to go a day early and well….that ended in throwing our luggage off the train in a frantic hurry before we ended up getting kicked off in a random city(or country!)

But we made it to Amsterdam!  Ahhh, we LOVED Amsterdam! Walking the canals, canal boat tour, Anne Frank house, Heineken tour, The Red Light District, The Bulldog, lots of ‘coffee’ shops (they don’t sell coffee there FYI) beer, dinner with our Family from The Hague, more beer, bitterballen, making new friends from the UK and Italy,  clean trains and trams, and bikes, bikes and MORE bikes!

Beautiful church 

Cocktails on the train 

The canals

The gay bar we had a drink in

Yes, that’s MILES per hour 

Another drink 

Smokin in The Bulldog

The Bulldog 

Proost at Heineken

Ummm, Brian, need I say more? 

The secret annex the Frank family hid for two years 

Gorgeous canal 

Anne Frank house 

Train ride 

Williams on the canal 

Dinner with Olav and Marlene 

Beautiful 

The Anne Frank house-no photos allowed inside. A must see if you make it to Amsterdam. So hard to imagine and so tragic. We must NEVER let anything like this happen again. 

Red light district

Seven bridges canal 

Love the architecture along the canals

Heineken and bitterballen 

The canal 

Heineken Tour

Our friends from the UK on our boat canal tour 

Texels makes a great beer!

This was a once-in-a-lifetime trip for me, literally!  We had an absolutely fabulous time and I can’t thank Brian and Colette enough for thinking of us and asking us to go with them on this trip. And my husband for knowing what it would mean to me to go and making it happen. I 

won’t lie-it was hard for me to keep up some days. Damp, chilly weather, 16k step days, lots of stairs and bone mets don’t always mix well and there were a few moments my frustrations with this damn disease got the best of me. But if I was a burden to anyone, they never showed it and gave me all their grace. For that I am most appreciative and truly cherish the friendship we have with these guys. ❤️

December is almost upon us, and will be as busy as the last six months I’m sure. I can’t believe 2022 is almost over, and Christmas is almost here. I’m most looking forward to spending time with family over the holidays and hope you get to do the same. Sending all our love to you and yours!

And I PROMISE I will update this blog more….

Love and hugs, 

K 

When it rains…..it turns into a hurricane around here…..

 My last post was in February, and ironically it was about my MRI results of my brain, and this one is about the MRI results of my right shoulder.  

You’re probably wondering what’s going on with my right shoulder so I will condense as much as possible-just know the last 3.5 months have been a complete sh*t show in regard to my health.  Early March my right shoulder started bothering me-just a twinge of pain here and there-usually with a specific movement of that arm, definitely not all the time. I go to Colorado mid-March with my sister for our Cousin Trip and it really starts bothering me daily-feels heavy, lymphedema flares up, difficulty sleeping due to pain, living on Ibuprofen, Voltaren gel, and the occasional morphine to sleep. 

Cousins! Me, Anthony, Kim, Angie in Estes Park

           Going to the Safeway in our caftans

             Kim, Ang and me Estes Park 2022

                                My Liv 🥰

       Kim, Aunt LuAnn and me La Junta, CO 2022

                                Amelia and me 🥰

         Kim, Uncle Mike and me. La Junta, CO 2022

Aunt Jeanne and Uncle Don, Aunt LuAnn Baird, Aunt LuAnn Vandetti Trumble, Uncle Mike Baird, Kim and me La Junta, CO March 2022

Get back home to STL and get my Oncologist to order X-rays of shoulder and humerus (upper arm). Negative other than slight AC joint separation-the AC joint is where your collar bone meets your shoulder-but no big deal. Recommended to ice and rest. Within a week pain is worse-referred to Ortho doc. He says it’s frozen shoulder, let’s do a steroid injection. BUT FIRST let’s do some lab work to see what my inflammatory markers are. Guess what? They’re crazy high. Imagine that. So he has me see his NP who tells me we can’t do steroid injection now, let’s get a CT of your shoulder. THEN 3 days later I get a call that we aren’t doing the CT now, but a shoulder aspiration instead. (Take sample of fluid out of shoulder joint with a needle). I’m flabbergasted at this point because now it’s been 3 weeks since my X-rays, pain no better, losing range of motion, and nobody can tell me what the plan is regarding this aspiration-and the office nurse has called me by the wrong name 3x so I’m beginning to wonder if they even have the correct patient…..So I call one of my very fave Rads in KC. He gives me some great guidance and scenario plays out how he thought it would. Aspiration gets yucky yellow fluid, Ortho freaks out and decides I have a septic arthritic shoulder and need surgery ASAP. 

Surgery on 4/25 to clean out the ‘infection’ in my shoulder joint. Then refers me to Infectious Disease Dr who recommends 30 days of IV antibiotic to be administered by me at home through my port. Yay! Time to start the pro-biotic! 

                My 30 day home antibiotic set-up 

               Home post shoulder surgery 4/25/2022

At one week post surgery follow-up my stitches are removed and Ortho Dr discharges me from his care-ummm, doc, I have worse range of motion, and horrible pain still. Oh, and NP gave me no pain meds to take home so I’m assuming I shouldn’t be having pain. He reiterates I just had surgery, give it some time and bye-come back anytime if I need anything else. Oh, and my cultures didn’t ever grow back any type of infection or organism and it probably never was an infection-likely frozen shoulder.  Again, flabbergasted. 

Now I’m questioning the pain I’m having and if it’s really that bad. Start doing some therapy on my shoulder for what we are now thinking is frozen shoulder diagnosed by way of a completely unnecessary surgery and even more unnecessary antibiotic use. Pain gets worse. Range of motion worse. 

Go to PCP and he’s wondering where any imaging is that he’s sure my Ortho Dr did. Well, there isn’t any. Orders MRI of shoulder. But before that can be done I end up in the hospital with a horrible episode of Colitis (think 22 trips to the bathroom in about 12 hours)  GI Dr comes in and decides to do a simple blood test-iron. My iron is 16!  Low end of normal is 38, I have less than half that in my body. GI doc thinks my low iron, red blood cells and hemoglobin along with massive NSAID use and 30 days of antibiotic caused the colitis. More IV antibiotic, this time for a REAL reason and an iron infusion and home in 2 days. Continue 10 days of oral antibiotics at home. 

                   Iron infusion #1 in the hospital 

Home Sweet Home…..I’ve got no more abdomen pain, just some nausea.  Pro-biotic has helped with excessive diarrhea. Shoulder and upper arm are killing me. Range of motion so bad I can no longer even bring my right arm up to my forehead without pain-now everyone is thinking it’s a rotator cuff tear.  No more ibuprofen. Set up for 3 more iron infusions over next 3 weeks and then re-evaluate. 

Finally MRI of my shoulder was 6/22 and I got results on 6/27. 

Drum roll please……..

Worse than anyone expected. Or even could have imagined. 

Right humeral head shows large focal area of osteonecrosis with mild flattening and collapse of the humeral head. Associated adjacent bone marrow and soft tissue edema. Small glenohumeral joint effusion.

What does that mean in non-medical jargon? Basically the round part of my humerus that fits into the shoulder joint space is dead. Yep dead. D E A D. Osteonecrosis is also referred to as Avascular Necrosis meaning the blood supply to the bone has been shut off somehow. The other words mean swelling and fluid around that joint too. 

It gets better…..I also have moderate tear of one of the rotator cuff tendons along with fluid there too. Oh, and subdeltoid bursitis and biceps tendinopathy. And let’s not forget the joint effusion-otherwise known as a pocket of fluid in that area too. 

Whew. I think I covered it all. I mean, go big or go home right?  I went big this time. Big BIG. 

We’re still trying to figure out how this happened as shoulder osteonecrosis is not very common at all. Actually it’s considered rare. Again, leave it to me. 

Was referred to a new Shoulder Ortho doc by my PCP and that guy’s nurse called me back today and he won’t even see me because my issues are way out of his comfort zone-thanks for being honest. Oncologist gives me a name-call them today and it took 4 hours to decide if they would even see me since another Doc had already done surgery less than 90 days prior and if so, who in their group. Good news-I have an appointment with a new Ortho guy who specializes in shoulders on July 14th. Further out that I wanted, but ahem. I digress. 

What is the fix for this debacle you ask????

Shoulder joint replacement is the most likely answer. And probably going to happen pretty quickly after that appointment. Woo-hoo, I’m so excited to have this surgery  (Insert extreme sarcasm here) hey, maybe this arm will be bionic with my new shoulder!? 

Ahem. Again. 

In the meantime we are heading to KC this weekend to go to the Kenny Chesney concert we bought tickets for in 2019. Thanks Covid. But we are really looking forward to it because our cousins from NOLA are coming up to go with us along with my girl and Logan and my Sis and her man. And we’ve been waiting 3 years darnit!  Anybody else going?  We’ve got floor seats and I’m sure we’ll be doing some parking lot pre-gaming so hit me up for a pre-concert cocktail if you’re going. 

 We also plan to take the NOLA people to some gas station BBQ, and maybe the biggest and best chicken wings ever-it’s a KC thing iykyk! 

That’s all for now-promise I won’t wait 3.5 months before I update again. And it will all be good news. It HAS to be, cause I’m maxed out on crappy news. 

At least everyone else is well! 

Hope y’all are having a great summer so far and have a safe and happy 4th of July! 

-k