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

Spine Surgery is a GO!

We have been preparing ourselves for Ethan’s big back surgery June 30th, until we got a call last week that due to Covid it had to be rescheduled. They didn’t have a date for us at that time, but wanted us to go ahead with all of his appointments needed to ‘clear’ him for surgery in the meantime anyway.
So we visited his amazing Pediatrician in person. Gosh, I love Dr Russell! She is such a fan of our bald kid and I’m so happy to have her in our corner! All good there, said he’s the best she’s seen in years. Weight is stable, coloring of feet and hands is better, and of course he was sitting up showing off for her.
Pulmonology was next-it was a Telemedicine appointment. Based on his history of being difficult to extubate, she thinks he may suffer from a little obstructive sleep apnea because he’s hypotonic (floppy) and that his pharynx may be a little floppy too. He’s required racemic epi and oxygen and even bipap after a couple of surgeries. And he’s never been able to cough hard enough to clear so we are getting a cough assist machine at home to start working on his cough. Because post-op and in pain and he sure won’t be coughing on his own.
Then we took him to see our favorite bald doctor-Ethan’s cardiologist Dr Kaine. After an ECG and Echo, all of which were FABULOUS, he’s ok from a cardiac standpoint for this surgery too. His echo shows mild aortic and mitral valve leakage, which we already knew about, but his Melody looks as good as the day it was put in almost 7 years ago!
And after we got home from that appointment, I got the call that they DO have a surgery date for us now-June 19th is the day! Sooner than we expected, but all good!
He has a couple more appointments before the big day and a full spine CT and MRI. Since his scans will be done under anesthesia he has to have a Covid test done the day before-drive thru style at the main CMH campus. And the day before surgery he’ll be having a PICC line placed which will serve as his IV access, so no need for a bunch of pokes to get an IV at the start of surgery.
Our next few weeks are going to be crazy busy with E’s appointments and I have my 3 month CT and several PT appointments along with my regular visit with my Oncologist and my shots.
I’d be lying if I said I wasn’t a nervous wreck about Ethan’s surgery, it’s a major one. It’s an 8ish+ hour surgery, but because of Ethan’s heart, there will be a second Ortho doc along with Dr Schwend in the case. They will keep it to 6 hours to keep him safe.
They will be placing rods the length of his spine from T4-L5 -so upper back all the way to his pelvis. He’s going to be in a lot of pain post-op, so pain control will be our main focus in the immediate days afterward. I don’t know all the logistics of recovery time, PT, movement, etc. We have an appointment with Dr Schwend on the 10th to go over all of our questions.
I’ve had several people ask if now is a good time to get this surgery done for Ethan with all that’s going on with me. And I thought about it, long and hard. But I’m not going to get ‘better’. And right now Hailey and Parker are both here to help me take care of him. And we’ll have nursing. It’s a harsh reality, but one to face that if we wait another year there’s the chance I won’t be in any shape to partake in his care at all-AND the older kids may not be here to help. And besides, since there’s a pandemic going on, any vacay plans we had for this summer are shot anyway-so surgery it is!

Last weekend my sister, Mom and I took a trip to La Junta, Colorado-my Mom’s hometown and where some of my Aunts and an Uncle still live. My sister-cousin from further North CO came down too. We had a great time. We laughed. A lot. We painted signs and ordered carry-out (fantastic vermicelli) we visited the cemetery where my Grandparents are buried. My nieces (really my cousins-but more like nieces) and I walked the cemetery and looked at all the headstones and inscriptions and flowers and trinkets loved ones placed there and saw a headstone that was a bench.
I thought, what an amazing idea. A place to sit and talk to your loved one when you need to. We joked about how some headstones were covered with flowers and what-not. I laughed and told the girls that just like the ginormous extra bow their Mother needed on her sign the day before, that I’m not a believer in ‘less is more’ but rather ‘more is more’ and my headstone better be as extra as that bow I made their Mom. More is more! And that I would haunt them all if they didn’t remember that. I also got to see my Aunt Linda who is fighting her own battle with Breast Cancer right now-she’s on the downhill slide with only about 9 Radiation treatments left! When I was younger she corrupted me and fostered my love of horror movies by allowing me to watch The Shining when I spent the night with her! We walked to the 7-11 for our Big Gulps and M&M’s and then hunkered down to watch my first scary flick-I was probably 7. But I wasn’t scared because we had her big Dobermans to protect us! Anyway-keep her in your thoughts. Have I mentioned how much my family hates breast cancer-I mean really-three women, when is enough? We need a cure already.

I’ve been unemployed now for 6 weeks and it’s a weird feeling. Kind of like an extended vacation. I miss my work peeps for sure!
I wish the weather would pick a season-it rained like a monsoon here today and was cold last week and then we had summer temperatures other days! Makes it hard to plan anything. But then again, I have big plans everyday. Gonna finish a specific project, gonna start a new one, gonna clean out the basement, gonna clean out the garage. And then some days I just don’t have it in me to do much of anything. So I don’t. I’ve started making smaller lists of things to complete-so I don’t feel so worthless when I only get one or two done.
I’m hoping when I tell my Oncologist about my fatigue that she has some grand idea to help it. Especially since I’ve found a good combo for my pain that doesn’t make me drowsy-I hate that my energy is so zapped all the time.
I’ve got a couple of sign-painting classes coming up and I’m looking forward to them. I had one last week and it was so nice to be around people again! And I love seeing people create something they are proud of-everyone thinks they aren’t artsy or crafty-and those people are always surprised at how good their signs turn out.

I hope everyone is staying safe. I’m sick of the Covid and what it’s done to all of us. I really miss my family and friends. My gals I used to walk with and have a GNO with. I miss handshakes and hugs. I want the world to open back up again, and damn I miss First Friday’s. I’ve binged everything on Netflix and Prime and Disney+, now I’m watching an old favorite NYPD Blue. I did just finish an incredible book call Man’s Search for Meaning by Viktor Frankl, recommended by my Onco Psychiatrist. It’s written by a Holocaust survivor who was also a Psychiatrist. Currently we are working on what I want my Legacy to be when I’m gone.
Right now it involves lots of sleeping, wine and swearing. Lots of swearing. My Psych thinks I need to work on that Legacy....we’ll see.

Keep Ethan in your thoughts and prayers to remain healthy for the next 3 weeks.
And good results on my CT Scan.

Will keep you updated.

Love, hugs and prayers,
K



Pic of Ethan’s curve-we can’t wait to see how much taller he gets when his spine is straight!
He’s our little hunchback

Quarantine update.

Since my last update Ethan decided to take a trip to Big House, yes, in the middle of a pandemic.
He was fine one minute and then he wasn't. In true Ethan fashion he spiked a temp and his oxygen sats dropped. He was having difficulty breathing and doing a little forced, long expiration. When we couldn't get his sats over 88 we headed down. With all the Covid precautions in place, the ER was empty. We got in and seen quickly and got put on 3 liters of oxygen to keep his sats at 90. Labs came back showing an elevated white count of 26k (normal being 4.5-11k) and an elevated CRP, which indicates an inflammatory process going on in the body. Those alone with the oxygen need bought him a room on 6 Hall Tower. His viral panel came back negative so they decided to test him for Covid. Never before have I been so scared for him, knowing he did not have the ability to fight that virus. Thank goodness it was negative, as was his chest x-ray and blood cultures. It was a short stay of only 4 days, and they ended up calling it an 'unknown viral illness'. I'm so glad it was just four days because with all the isolation precautions in place, only one parent can be in his room at a time. We are used to both of us being there a lot, plus Hailey staying overnight (she's young and can handle the 'bed' in the room) And it was just kind of empty, lonely and sad without people roaming the halls and everyone's faces covered by masks.

The week after Ethan's admission was my last week of work at NKCH. My last week of working as a CT Tech after almost 26 years. No, I didn't leave to go work somewhere else, other than home. My button-pushing days had just run their course in the midst of everything going on. Between my diagnosis and Covid, it was time. I am eligible for disability based on my metastatic diagnosis and have applied, and now is time to take advantage of all that social security I've paid into since I started working at age 15. Brian wanted me to quit working back in February, we just needed to get things squared away since we will be without my income for 6 months before my first disability check comes. I still have the allowance of making a little bit of money every month, so I will likely get a job doing something once the world opens back up again. Maybe. I'll definitely have time to do more of my sign classes and I've got some other fun and crafty things on the horizon too.

It's really weird being home all the time. Literally, ALL.THE.TIME. with nowhere to go.
I've made a lot of dinners for the family.
I've done a lot of laundry-sheets, blankets, pillow covers, curtains, all the stuff that doesn't get washed as often as it should.
I've made a few signs.
I've burned a bunch of wood in the firepit and cleaned up our back patio (sorry to my backyard neighbors for the eyesore our wood pile had become)
I supervised my husband planting two new trees.
I helped weed our landscaping beds and pull dandelions and dead bushes.
I've taken several walks around our neighborhood-some with Ethan, some with Hailey and the dog, some by myself at night to think.
I burned some more shit.
I (and the kids) cleaned up the storage area of the basement that holds our holiday deco, now we just have the other half to do which is full of stuff from the boutique.
I celebrated a birthday-number 49 yay-and zoomed with family for it.
I've done a lot of online shopping-A LOT-so much so that after six packages came today I'm pretty sure my husband has hid my debit card from me.
I've drank a lot of wine and even decided to become a wine seller of clean-crafted wines. Watch my FB page for more info on tastings soon-even virtual ones!
I've downloaded a dozen books to my kindle I'll start reading now that I've binged everything good (and not so good, and downright hot mess express) on Netflix, Hulu and Prime. Hell, I've even started re-watching Weeds and am pretty sure I'd make a good Nancy Botwin....
I'm really glad I don't have to homeschool anyone, because they would fail. It's hard enough with the bald kid when he shakes his head NO at me anytime I mention doing some class time online.
I've enjoyed being Mom and wife and yes, cleaning the kitchen and bathrooms and making meals for those I love.
But if the world doesn't open back up soon I'm gonna go crazy up in here!

I need to see my friends and do our girl's night out dinners. And I need to get back to our Sunday Funday brewery tours with the Pruettings. I need to do Taco Wednesday at Hard Core with the fam. I need to be able to see my sisters and parents and not fear for anyone's health. I need to get my fork tattoo with my bestie. I need my cousin to be able to re-book that flight she had to cancel. And I need to enjoy a nice dinner out with my love. But I understand the need to take things slow. And I'll likely stay locked up for several weeks after everything opens back up. And that's my choice. In the meantime, it kind of feels like the movie Groundhog Day. If I don't make myself do something productive every day, I'll lay on the couch and channel surf.
Now that it's May I'm starting a healthy eating and moving regimen around here and nobody but Hailey and Ginger are happy about it. Yes, the boys are griping, but they'll get over it. We're gonna get healthy if it kills us. And being locked in the house together, it just might!

I started having some pain in my right hip a few weeks ago, and told Dr Nye about it at my last appointment. She ordered some imaging and it shows that I have new metastatic lesions on my right femoral head, as well as my lumbar spine in multiple areas-predominantly at L1 and L5. It's definitely not the news we wanted, but we'll deal with it. I'd be lying if I said I wasn't pissed to get that news. I had some moments of anger and frustration and sadness and why me? and why us? and why isn't the chemo working? But then I come back to why I quit working in the first place, to have time with my family.
Dr Nye is less concerned about the new lesions, and won't be until we get my next scan in June. My tumor marker is down to 39 whereas less than 38 is normal, so she thinks the areas may have already been there in January and are reacting to the chemo causing them to show up more clearly now. The pain in my right leg is intermittent, but when it's there it's a 2 morphine pills kind of pain. That kind of pain makes laying around all day easier to feel less guilty about. Please don't feel sorry for me, I'm not giving up. But an extra prayer that my June scans show no new disease and my tumor marker stays within normal range wouldn't hurt. And a prayer for my family-all my family. I know this is hard on them. And then open a bottle of wine or whiskey and drink a toast to happiness-and not to waste a day without it. And call or text or write your loved ones and tell them that you love and miss them. Life's too short. Way too short. Don't let it get away from you. I think this quarantine has helped a lot of people realize that and get back to the basics of family and togetherness, I know it's helped us.

I'm off to change into my 'nighttime jammies' now and go read a book to Ethan. It's supposed to be gorgeous here tomorrow and as long as my pain is taking a day off, I have big plans for the garage and yes, more firepit burning. Oh, and Stroud's for dinner. My sister face-timed me from NOLA the other day munching on some Gus' Chicken and I've craved fried chicken ever since. Speaking of NOLA-we've made plans for a trip down in September with our friends the Williams and it ought to be epic-every thing with them is! We are so looking forward to it. And now that I'm home full-time, I'm going to start writing the book I've always wanted to write. Will keep you all updated!

much love,
k

frangar, non flectar
"I will break, but I will not fold"

Good news in a crisis is still good news!

I’ve had several appointments and lab draws since my last post so I figured it was time to do an update.
My genetic tests came back with no genetic predisposition to breast cancer, and no link to any other cancers often seen with breast cancer. I’m just one of the lucky 1 in 8. And one of the 3 of those who end up with metastatic breast cancer. I’m ok with not having an explanation or reason why this happened because it means I don’t have a gene that I’m passing on to my daughter.

My new oncologist got worried that we would have to stop my Kisqali because I had a couple of EKG’s that showed QT prolongation, or an abnormal heart rate. But we lowered my nausea medication dose (it can cause it too) and so far, so good. I get to stay on the medication that will be the most helpful for me.

I met with Dr Custer at my one-month follow up from my Cryoablation and I’m still pain free in that hip! I don’t need to see him again unless I have another area we need to ablate. My insurance denying the $40k price tag saying it’s ‘investigational and experimental’ is a whole other story......

We got my first tumor marker results back since I started the chemo and had the Cryoablation and it dropped 29 points!! Since the Ca 27-29 is subjective for soft tissue mass recurrence (mine never changed when we knew I had a 2cm mass) but seems to be pretty accurate in tracking bony mets and their response to treatment.
I also had my first CT and bone scan since starting the regimen I’m on and I’d be lying if I said I wasn’t a little anxious. But, it shows
NO NEW AREAS OF METASTATIC DISEASE!
All of the areas we knew of on my thoracic spine and pelvis are stable. They did show more sclerotic than my last CT but that can happen when they are responding positively to treatment. With my dropping tumor marker and no new disease, we have to assume the meds are working! Good news for sure!!

Now in the midst of all this Coronavirus pandemic, I’ll admit I’m a little freaked out. My white count hovers around 2.9 on a scale of 4.5-11 so I’m considered neutropenic and susceptible to infections. But other than my crappy arm, I’ve felt better than I have in months recently. And short of using up all my paid time off until this blows over, of which I don’t have a lot to begin with, I’m going to work. Or hit the lottery and stay home. I wear my mask and protect myself and have had some great coworkers help me out by letting me have limited direct patient contact and being the button pusher. I mean, after all, isn’t that really all we are!? If we end up with a positive case at the hospital or close to home, I’ll reevaluate going to work.

Ethan’s school is closed until April so he’s home in his bubble for now too. His spine surgery is scheduled (for now) for June 30th. So we have to keep him as healthy as possible for that.

Since Brian and I have no choice but to go to work, I can’t stress how important it is for everyone to follow the recommendations for social distancing. And please don’t go to the ER right now to request being tested. Stay home. And think about your family and neighbors and your co-workers. These are unchartered waters we are all in and we’ll only get through it together. We’ve likely not seen the worst of it here and that scares me. The CDC changed the recommendations for us wearing N95 masks to regular surgical masks. That doesn’t mean the risk of us becoming infected is any less-it means hospitals don’t have the needed supplies, and we need to save what N95 masks we do have for more invasive procedures.
Again-stay home and guess what? You don’t need a mask! Leave those for the healthcare professionals caring for your loved ones.
These will be trying times for us all, emotionally and financially. So remember to support your local small businesses. Grab a bite to eat to-go from a family owned restaurant-we have tons of those in KC to choose from.
Please stop buying up all the toilet paper and hoarding food and supplies. There are many folks on a fixed income who can’t afford to do that and need to go to the store weekly for the things they need. Don’t be the asshat who does that.
Going to store or pharmacy? Offer to pick up something for a neighbor or family member who is at risk and can’t make those needed errands.
Wash your hands and cover your cough.
But most of all?
Just be kind.

Much love,
K

Operation Booty Freeze......Complete!

I had my Cryoablation procedure Friday and so far so good! Dr Custer was awesome and able to get 2 biopsies of the bone we are awaiting results on. The pathology of these areas likely won’t change the treatment, but it will be advantageous to know exactly what-if at all-the breast cancer has morphed into in my bone. I am beyond happy ( and almost afraid to say) that the bone pain I was having is all but g o n e .
Now, the pencil eraser size hole in my left butt cheek is another story. It hurts like I was kicked by a mule there, and feels like my ass cheek is in a constant contraction when I walk. I’ve been taking it easy (I swear!) and I’ve only had to take 1 morphine so far. But I think I’ll be taking one when I go to bed tonight. As for Operation Booty Freeze-Dr Custer was able to freeze about a 4x3 cm area of the 5x2 lesion on my butt bone. It was sclerotic lesion- meaning that it was hard and thick and typically represents slow growing disease progression. Which is a huge bonus for me!
Now we wait and see, but as long as I’m pain free then we succeed with what we set out to do and I avoided Radiation therapy to that area. Not saying I won’t have to use radiation somewhere down the line-but right now I simply don’t need it! AND, if need be, and the pain comes back, we can always go back in and freeze some more! Brian and my mom and sis were all impressed with Dr Custer and the whole procedure; he went to talk to them after the procedure was over and explained exactly what he had done and answered all their questions. I’m thrilled with what we accomplished and highly recommend anyone in the same situation to research RFA and Cryoablation to see if it can help them. I had to be my own advocate and I am lucky enough to have friends in the field who led me down this path and helped facilitate it. Not one of the doctors or NP’s I have seen ever brought up this option. And in the situation I’m in, I’m leaving no stone unturned and every option is worth exploring.
And maybe that’s why this happened to me. Maybe I was put in this situation to help encourage others to advocate for themselves. I’ve had lots of amazing messages and texts from people that I’m an inspiration. I honestly don’t feel like I’m doing anything other than fighting for my life. And sharing my story along the way. If one person is inspired to take control of their life or illness from what I share-then I guess that’s what I’ve been put here to do.
I’m not strong, definitely not as strong as you all lift me up to be. I go on with the support of all of you. By looking at my kid’s faces daily and having the desire to miss nothing in their lives. And my heart aches that I likely will.
Of approaching our 18th wedding anniversary and planning for a big party on our 20th and doing everything I can to live that long.
I go on when I read a message or a text from one of you, they fuel me to do more, be more, learn more.
And I thank all of you for that support and those words. Usually they make me cry-and that’s my 5 minute Pity Party and then I warrior on because YOU have all lifted me up.
I am not my Stage IV MBC Diagnosis, I am what I do with my life because of that diagnosis.
I told someone who asked how I was doing the other day that I walk in faith and fear daily.
It will be like any other day, I may be at work or home and doing something I do every single day without a second thought and then the fear sets in.
I may not be here in a year.
Doing this job.
Or doing the dishes.

I may not be alive.

Typing that takes my breath away.
And then the faith sets in and life goes on.
I may not be here in a year, but I’m not going to worry about that today.
Life goes on.
And each day is a gift.
So I’ve learned not to take the little things for granted-even doing the dishes.

With that said, life goes on in the life of the bald kid too and we are at an impasse with his spine. We had been hoping to avoid spinal surgery for him, but it’s looking more and more like it’s in his immediate future.
His curve is nearing the 90 degree mark where surgery is needed. He’s at 87 degrees right now.
Ahem.
It is what it is.
We will do what we have to and next week I’ll be calling Dr Schwend and Val to set up some dates for end of the school year.
At this point he is planning to place rods the length of his spine from thoracic vertebra level 3/4 to lumbar vertebra 5. For those of you unfamiliar with the spine, your thoracic spine has 12 vertebra and your lumbar has 5 vertebra....
Yes, that long.
But, it appears he can avoid going into his pelvis at this point and we’d like to get it done while that’s the case.
Why do we do this you ask? What’s the point and benefit?
Well, imagine trying to learn to walk and sit up unassisted with a 90 degree curve of your spine.
Imagine having asthma and a heart defect and having that pressure placed on your lungs and heart from a 90 degree curve of your spine.
That sitting can be uncomfortable and he can’t even tell us.
It’s not something I’m looking forward to, but the benefits will be there when it’s all over.

Brian and I got to be a part of an amazing event today called Project 14.
A friend, fellow KCPD family and a former vendor at our boutique has a dear friend who is a photographer and suggested we partake in her project. Thanks Morgan!
Jeni Lewis of Acres of Hope Photography wanted to do something special in honor of her parent’s relationship during her Dad’s battle with cancer.

These are her amazing words;

Two years ago, I started Project 14. I wanted to take my grief and turn it into something impactful and positive; to not only honor my dad's journey with cancer, but also my parent's incredible love and commitment to each other through it all. Since then, I've had the privilege to meet 28 beautiful couples, and get the opportunity to celebrate their stories. They are strong and courageous, yet incredibly vulnerable and humble at the same time. They have reminded me to look for the GOOD in every single day, and to release my grip on the small things of this world that really don't matter. They inspire me, and I truly love each one of them.

So today, we got to be one of the couples photographed for her 2020 Project 14.
I can’t wait to see her beautiful work of all these couples in the midst of their battle. I know I had a great time today and got to laugh and smile for a few moments with my amazing, supportive husband. And I got to share a little bit about our journey and meet some super cool people.
Ps-Restoration 1894 Event Space on the square in Liberty is absolutely gorgeous!

Please go check out her work on FB and you can even see her previous Project 14 pieces.

I know I was going to post earlier, but I came home and took a nap. Now I’m wide awake and cleaning out the shelves in my closet....and blogging. I should probably go to bed now.

Much love,
K

A numbers game......

Since my last post I can proudly say Kansas City Chiefs are AFC Champs AND Super Bowl Champs!!!
Such an exciting time for our city-especially the million that showed up in freezing weather for the Victory Parade! Including my children and my poor husband who worked P&L many, many hours last week.
Woo-hoo, vacay paid for!!!

I started my chemo shot and pills and the shot to help strengthen my bones. The combo of all three sent my body into a tailspin-nausea, fatigue and no relief from my butt mets. But after a few days of fluids, switching up meds-now I take an anti-psychotic drug called Zyprexa off-label for the nausea (my husband says is appropriate) and it seems to be working. I now take my Kisqali at night and 30 min later take the Zyprexa and it’s working-I can actually sleep and not feel like I have a brick in my stomach for hours.

There has even been a little relief from the butt bone mets-unless I sit on my hiney on a step stool for hours rearranging the pantry.....not really relief, it just hurts differently. Now, mostly if I sit, I have to shift all my weight to my right butt cheek instead of my left and it helps. Standing and walking isn’t too bad. But hopefully that will all be taken care of this Friday with my Cryoablation.
Happy Valentine’s Day to me!

Today I met with my new oncologist Dr Lauren Nye at the KU Westwood Campus. And I really, really like her. Some of you are asking why I switched Oncologists, especially within the same system.
I do love Dr Sheehan, but since my diagnosis of the MBC, I have yet to sit down and have an appointment with her. All communication has been through 4 different nurses, which, to be honest, kind of just pisses me off. I’ve started a whole protocol of drugs, had an ekg and have had to do my own research and pursue getting the Cryo done all without having talked any of it over with her. I’ve been her patient for 8 years. Apparently I’m just another number there.
Well, I am a number, but not in the way I’ve been treated at that office.

I’m number 48. My young age
I’m number 3. Mother to that many children
I’m number 1 of 8 women who get breast cancer
I’m number 1 of 3 of those women who end up with MBC
I’m the number 1 wife to my husband. (Well....really his #2, but we don’t count that mistake)
And I’m gonna be the number 1 bitch who makes this cancer fight the hardest fight it’s ever seen to beat me.
And that’s where I wasn’t getting the support and answers I need.
Communicating between 4 nurses to get questions asked is unacceptable. So I switched. Because this is my fight and I refuse to fight healthcare providers to get what I need.

Dr Nye is not changing the drugs I am on, she is, however, going to keep giving me my Lupron shot for estrogen suppression, which Dr Sheehan had decided to stop doing.
She is also very knowledgeable in the genetic/genomic realm of breast cancer.
I am BRCA negative, we did that test back in 2012, but I have not had any updated gene testing since then. My spitting game was on today as I filled the little tube being sent away for that gene testing.
The testing will tell us if my cancer is somehow genetic in form or has a connection with another type of cancer like colon. There is a link between the 2 and we need to make sure I don’t carry that gene, and if I do, get that addressed. The testing will also help Dr Nye know if I need a different protocol of drugs at some point.
Insurance does not cover the updated gene testing-so the lab will do some testing and then if they need to do more they will call me with a total if I choose to proceed. Well, with kids and especially having a 23 year old daughter, we will figure out a way to pay for whatever it is they need to do.
I will be getting a bone scan and Chest/Abdomen/pelvis CT every 3 months from this point on. Ironically there are no recommendations to do follow up scans until you’re Stage IV with one foot in the grave.....
These are to track the areas we already know have metastatic disease and to ensure no new ones pop up. The drug protocol I am on right now has been shown to prevent disease progression for 18-24 months. And if they stop working, there’s always clinical trials and new drugs popping up every day. This is also where the results of the gene testing can come in handy, as we can do some genomic testing specific to my tumor type.

She’s also going to ask Dr Custer to do a bone biopsy on Friday when he does my Cryoablation. I asked because my recurrence in 2018 was a little different make up than my first tumor and I’d like to know if this is any different. She said she’s gonna ask really nicely to see if he will.....cross your fingers......

She also recommended a referral to an Oncology Psychiatrist-right now they are about 3 months out with making appointments so I’m on the list. It will help to talk to someone who has no dog in this race, and can be objective.

We’ve also cleaned up our eating and doing about 80/20 whole food and plant based eating. It takes a little while to prep-but I sure feel good after eating the meals I have lately. My bone density study shows some mild osteopenia so I have to take a calcium supplement, but no more than 1000mg per day in pill form, so I need more through my diet. And I love me some homemade hummus that my husband has been making so I’m good with that ‘prescription’.

I was really impressed with Dr Nye and her nurse who walked me through all my upcoming appointments and what to expect in the next few months. My appointment was an hour long, I never felt rushed.
She did a more thorough history than I’m pretty sure I’ve ever had. I will be seeing her every month for at least the next year.
I’m glad I made the switch and even though my protocol had no changes, my heart feels like I’m at the right place.

I was treated like a number here too, only it was like I was their number 1.



Much love,
K

Getting my booty froze....

A couple of weeks ago a friend sent me some info on a procedure called Osteocool, a radiofrequency Ablation that is used to ablate tumors. She is working just outside of DC, so recommended I check around locally to see if anyone does it here in KC. She also said they are seeing great results with pain control.

RFA involves drilling a hole into the bony tumor, then inserting a probe that is heated up so hot it essentially erodes away the tumor. And by hot I mean 150-190 degrees hot.

So I text my friend, and IR Tech at KU, and asked her if they did this procedure there. And they do!! So, had my CT sent to the docs at the main campus and they called last week to tell me they reviewed them and felt they could help me out!
Today I had a consultation with Dr Brandon Custer, an Interventional Radiologist at KU. And though I had thought I would be discussing having the Osteocool RFA done, he actually feels that doing Cryoablation is more appropriate. Working the same way as RFA, except instead of using heating probes, they use cooling probes. And by cold, I mean -40 degrees. Yes MINUS 40 degrees. Think KC has been cold lately, well......this is cold.
Same process of drilling a hole and then inserting the probe. As they cool it down, it will form an ‘ice ball’ around the tumor essentially killing off the cancer cells. Yes, you read that correctly-killing. the. cancer. cells.
This is all done under CT guidance (go CT!) and they can actually SEE the ice ball form. I think I might ask one of the techs to take my phone and record that for me!? I mean, help a fellow CT sister out!?

Why cold instead of heat? He said the cooling is better for that area and he’s the expert so I’m game!
Apparently they need at least a 1cm area around the tumor to make sure they don’t affect surrounding tissue and muscle and nerves and all that good stuff and my sciatica nerve is 1.8 cm away from my ischial tuberosity. Whew!
The pic in this blog is of a pelvis, and the red areas are the ischial tuberosities-or your ‘sit bones’. Because they are literally the bones in your butt that you sit on-see other pic.

I will be under General Anesthesia due to the painful nature of it, but it’s an outpatient procedure so I get to go home that day. Oh, and the day we are doing it is none other than Valentine’s Day. Yep-Brian said “here’s your gift honey, getting your booty frozen!”
Did I mention they will be going in from the back-so yes, through my hiney.
Even better news is that they are seeing good results from people who have 8/10 pain score going down to a 2/10 and lasting longer than Radiation Therapy. Since I’m currently living daily at about 6-7/10 and on some days even 10/10, that is music to my ears! When asked how my pain is, the easiest way to explain it is like when you’re 9 months pregnant and that baby is sitting on your pelvis and you feel the pressure on your hoo-hah. And like I’m constantly sitting on a hard bicycle seat that I can’t quite get comfortable on.
PLUS-it’s not radiation to my pelvis and other surrounding structures, AND if it starts to hurt again in a year or so or more mets come back-they can do it again!!

I’m so excited to have this option available over Radiation Therapy-but if needed we could essentially add that in too. Though it doesn’t sound as if that will be needed.
And I’m so lucky we have KU right here in town that has National Cancer Institute designation. One of only 70 facilities nationwide.
I’m blessed to have caring and smart friends who thought of me for this-thank you Sheila! And I’ve always said “it’s not what you know, it’s who you know” and having my dear friend Rose as a KU IR Tech who helped facilitate all of this for me with her docs! Thanks Rose-it’s sucks you’re off that day, you don’t get to see my booty freeze.

In the meantime I started my Kisqali today and so far, so good. I’m headed to bed and have to work all weekend so I’m hoping not to have any side effects. Goodnight and sweet dreams!

Much love,
K