Summertime Update

It’s been far too long for me to post an update. Typically that means no news. In this case-there’s been lots of stuff going on. Ethan’s spine surgery was Friday 6/19 at Children’s Mercy. And I’m not gonna lie-this surgery had Brian and I more anxious than any of his other surgeries. Even his heart surgeries. The potential for a variety of complications was huge. And in true bald kid fashion, this was no exception. 

Ethan was placed prone (on his stomach) for the entirety of the surgery and his back literally filleted open. As a heart kid they can’t dump fluids in him, and he lost enough blood during surgery that he got some of his own blood back on the cell saver and a unit of donated blood. He continued to need blood later in the evening after surgery also. He also decided to spice things up with some funky heart rhythms during surgery. That bought him some cardiac drugs-dopamine and replacement calcium, magnesium, potassium and albumin. And more time in the PICU.

 I almost laughed at Dr Schwend when he told us Ethan would likely be home 5 days post-op.....yep, it took Ethan 10. He just has to prove everyone wrong! But 5 days in the PICU with some amazing nurses and 5 days on 4 Sutherland with more amazing nurses and they got him squared away. I think I have been anxious from the day we knew he needed surgery until about last week. And he has done remarkably well at home. He went home with 56 staples we had removed July 8th and his 7.5 week follow up with Ortho is next week. He was off all narcotic pain meds within 10 days of being home-they wreak so much havoc on his gut we needed those to go fast. This week he’s been in his regular wheelchair and as soon as I feel up to it-I’ll be taking him for a spin around the neighborhood! And once we can get his adaptive tricycle adjusted to his new 3” growth, we’ll be cruising him on that too! 

 So, thanks to Dr Schwend and Anderson-the Ortho Dream Team-and all the fabulous staff at CMH, my worries were assuaged and overall our sweet boy breezed through yet another surgery. And check out how straight our boy’s back is and all his new hardware! 

Brian took the written portion of the Captain’s testing process in March, and completed the Oral Assessment portion last Monday. We are thinking we will know if he’s being promoted to Captain by sometime next week. I’m so proud of all the studying and preparation he put into it and I’m sure it will pay off. 

Hailey got the great news that she was accepted into the University of St Augustine Doctorate of Physical Therapy program in Irving, Texas!  Her hard work and perseverance in pursuing her dreams has finally come to fruition. We’ll be getting her moved to Texas and settled there in the next few weeks for an intensive 2 years and 8 months of grad school. At least I’m not working anymore and can go see her anytime she wants or needs me!

  

Parker turned 21 on July 2nd!  Yes-21!  I have no idea how, because I’m not aging. He and some friends took a trip to Colorado to celebrate and stayed in Denver and in a cabin with a gorgeous view in Estes Park. He has been very helpful to me at home with Ethan. I can’t pick Ethan up the way he needs to be right now-so P does the heavy lifting.  He’s still a little lost about what he wants to do with his life, and suffers from depression. We’ve had him in to see 2 different physicians recently and he’s seeing a third this week. I’m hoping the third time is the charm and we can get him squared away. As much as I wish it was something I could help him with-the best thing I can do is get him the professional help he needs and make sure he knows we will always be here for him.  This is not new, he’s struggled for years, as far back as middle school, and we’ve just seen him spiral the last year and we’ve got to get it under control. 

I’m doing well. Well is a relative term for me-some days are good. And some are not so good. This week is my off-week from chemo and it’s usually the toughest week of the month for me. At least the first few days of no chemo are.  Fatigue and nausea. And couple that with the heat and humidity of the good ole Midwest, and I’ve had some pretty significant aches and pains the last two weeks. My tumor marker is back within normal limits-35.1 on a scale of 1-38 being normal!  Woo-hoo-I haven’t had a normal Ca 27.29 for almost a year!  That and my CT that showed all my bone mets are stable with no new ones tells us my chemo regimen is working. 

But....there’s always a but in this family....

I have gained 25 pounds since January putting me at my heaviest. Ever. And it sucks. What sucks even more is to hear from my Oncologist that losing weight with stage 4 hormonally positive breast cancer is the hardest thing to do. My hormones are working against me and the drugs I’m on to keep my cancer at bay aren’t helping either. 

I’ve been walking-when I feel good and the weather isn’t like the Sahara or pouring-but the humidity makes my back ache. Oh, and I can’t go to my favorite chiropractor because ya know-spine mets and the potential for a broken back. So I’ve finally gotten Brian and Parker on board and we’ll be tracking all of our food and I’ll be doing the Fasting Mimicking Diet or FMD. There is positive research that FMD is beneficial to cancer patients not only to help with weight loss, but tumor regression and need for fewer drugs to combat chemo side effects!  Since Brian wants to get off his diabetic meds-the FMD will help him also-if I can get him to do it. 

It just pisses me off that 8 years ago my Onc didn’t stress the importance of losing weight and maintaining a healthy weight. Being that my cancer is so Estrogen positive (100%) just suppressing the estrogen produced in my shriveled up, raisin-like 49 year old single ovary I have left is not enough. Did you know that excess body weight produces estrogen? Ya, me either. Until now. And likely this weight contributed to my MBC diagnosis. So if you are a hormone positive breast cancer patient or love one-please encourage them to get the excess weight off. It may just save their life one day-in more ways than one. 

Oh, and Covid. I’d love to say that during the great pandemic of 2020 I accomplished something like learned a new language or perfected some culinary skill. But, alas, I did not. I binged some serious Netflix-Schitt’s Creek and Supernatural being the latest. And I’m really surprised my husband hasn’t kicked me out of the bedroom at night laughing so hard at David and Alexis and Moira and Johnny’s hilarious antics.  

And I did get elected to be the Secretary of our Police Friends and Family group recently. I look forward to helping out again with this group and our Blue Family. I even got to judge a Margarita Contest as part of my secretarial duties!  The Steak contest and Margarita contest proceeds were donated to our group and will help us help our officers and their families and continue to bridge the gap in our community. 

And I’ve turned our basement into my personal sign painting class studio. I love to sit and paint and listen to podcasts. I’m a true crime podcast junkie-so share with me your faves!  

And if you ever want to paint some cute holiday or home decor-hit up my business page Salvage 2 Chic I’ve got a class coming up end of the month. 

Brian and I are planning to head to NOLA with our dear friends The Williams in September-so I’m hoping the Covid cooperates and we can actually go down. Brian’s cousin Mike called last weekend to tell us that the Mayor just basically shut them down again by not allowing drinks-to-go from bars in the French Quarter. Apparently she felt there was too much gathering and the potential for it to be a hotspot too great. So I guess we’ll seen soon enough. 

But I am beyond excited about getting to do dinner and cocktails with my gals this week-it’s been a rough 2020 on all of us-and we need some laughs. It’s been way too long since we’ve been able to go out!  Now to decide where.....

I promise I won’t wait so long to post another update. In the meantime stay safe and if you’ve never watched Schitt’s Creek-put it on your list-you won’t be disappointed. Unless you don’t like to laugh. 

Gotta go watch the latest episode of Yellowstone and try to figure out how I can go work on the Dutton ranch and enjoy all that beautiful scenery. Not just the mountains and the horses, if you know

what I mean.....

Love, hugs and prayers,

K