New Treatment, New Beginnings, Endings that are a Beginning

Met with my Oncologist last week and we discussed more about my PET scan results.  She still feels the Elacestrant (Orserdu)is the drug for me because of the ESR1 mutation. She also presented my case at tumor board, and though it seems like a LOT of new metastatic disease, the overall volume of disease is not completely awful. Sorry for those of you lurkers counting down my days with glee-I’m not going anywhere soon. Many of the bone lesions were not even caught on the CT. How is that possible? You ask. 

Well, let me put on my ‘CT Tech of 27 years’ hat and tell you….a CT takes images through your body like slices in a loaf of bread. Each slice is a certain thickness and then instead of just stacking those slices up on top of one another, there is a small overlap so no space is missed. But….that does not account for things like breathing motion-which you can mostly control by holding your breath when the tech asks you to, and the simple fact that CT does not pick up activity, but rather the lesion itself, and it has to be a certain size to do so. Whereas the PET picks up the metabolic activity of the cancer. In layman’s terms-they are there, they are active, but they are small. 

Even the liver ones. 

Speaking of…..I am getting an MRI of my liver next week at the recommendation of one of the Radiologists at Tumor Board-thanks Dr. Neprud!  Kept me from having to ask for it. It will help us see those little boogers better and serve as a baseline for the future. So, my NKCH MRI peeps-I’ll be at the Pav on Wednesday 6/7 at 2pm. I’ll pop a “I hate MRIs and really tight spaces and am weirdly claustrophobic” pill prior to arrival but if you’ll have my eye cover and ‘concert-loud’ country music ready to go, I might just bring some treats…..

I got my Elacestrant last weekend and took my first pill on Saturday night. And I’m fine!  No really, just a little nausea for the first couple days, and now nothing.  I’m definitely happy for nothing so far! And last week I had blood drawn and got an Xgeva shot-to help with the bone health and hopefully the bone pain. Speaking of bone pain…we are going to hold off on any radiation or anything else related to that for now. Dr. Satelli thinks that as the Orserdu starts working and gets in my system that the pain will subside because it’s stopping the progression of the bone mets.  Keep your fingers crossed that works. Bone pain is not like any other pain I’ve ever had, and it’s hard to describe. Sometimes it’s achy, sometimes it’s sharp. Mostly it’s just uncomfortable. The hardest thing is finding a sleeping position that enables me to make it through the night.  I’ve got a pretty good concoction of pain meds that work well enough to get me 6 hours of decent sleep. And if I get a good nights sleep then my day is good. If not, well, you can imagine…

So right now that’s where we stand on the treatment horizon and I’m good with our plan. I go see Dr. Satelli June 29th and I’ll find out then if we will be scheduling a PET or how we proceed to monitor how the new regimen is working.  

In the meantime I’ve got life to live!  One of those things was celebrating the marriage of a sweet girl and one of Hailey’s dear friends; Jocelyn and Joey. Their ceremony was beautiful and we were honored to be a part of it-as guests and being asked to make their guestbook. I made a circle with their name on it for their guests to sign, and Hailey asked me to make her a new classroom sign for the former Ms. Hasenohr with her new married name Mrs. Wilcox -both turned out pretty good if I do say so myself  

We didn’t close down the reception because we had to get up and head to Oklahoma the next day for my Uncle Ron’s Memorial Service and celebration of life.

The service was lovely and probably one of the ‘best’ I’ve been to as far as memorial services go. It was clear the pastor and band members knew my Uncle. They spoke, played and sang from their hearts. Even though it was obvious they were hurting from his absence as much as we were, they knew he wanted us to celebrate the life he lived and the joy his homecoming in Heaven brought him. I know he was greeted with open arms by his savior and then reunited with his Mom and Dad-Flora and Herb, his sister Linda, his brother Tom and his niece Monique-oh, what a party that must have been! 

The guitar to the left is one my Uncle gave to one of the Church’s band members to learn and practice on. 

Then next to it my Uncle’s bass(what he played during services) and his favorite blue and orange Broncos shoes.

Since Ron wasn’t there to play bass on Sunday, they went ‘baseless’ in his memory. 

Biggest Bronco fan I know and love. Well, beside my cousin Chris….

We honored his request of ‘pizza and beer’ as some of the last words he shared with his oldest daughter Nicole were his desire for that. The last four remaining Trumble kids were there-my Mom and her last 3 sisters:

Aunt LuAnn and Mike Baird, Aunt Amy with baby Carter, Aunt Mici and Kathy, Aunt Jeanne and Donnie, my Mom Sharon. 

I got to see many of my nineteen cousins (I’m number 3) and though we couldn’t find a tattoo parlor in Bartlesville, OK to do our ‘Cousin Tattoo’ we had a great time. Lots of orange and blue in honor of my Uncle’s favorite team 

Don’t ask, but I’m pretty sure this chant was along the lines of ‘Tyler poops!’

The gang

#cheers2Ron

Girl cousins present:

Kim (my sister), Kari (me!), Holly, Laurel, Nicole (3 sisters) and Angela (our sister-cousin)

The boy cousins:

Robby, Luke (Ron’s son), Chris and Tyler 

10/19 Trumble cousins 

Aunt Kathy, Nicole and Laurel 

My cousins Christina, Ang and me

Uncle Mike and Aunt Lu with Angie

Me with Nicole and Laurel 

Aunt Amy (Ron’s wife) and Angie

Me with Uncle Mike and Aunt Lu

Angie with my niece Abi 

Chris with Aunt Amy 

I’m so glad I got to see these amazing people I call family. I hate that it was because we were saying goodbye to an incredible human. I mean, if we’re gonna get kicked out of a hotel lobby for being too loud, I wouldn’t want it to be with any other folks.  After all, it is kinda what this family is known for-being too loud. 

My uncle was kind and generous and caring and loved big and loved his God. And every chance he got he shared that love through his service to others. The legacy he leaves is a big one. 

Since we were in OK and only 20miles from Pawhuska, I got to check off another bucket list item of visiting the Pioneer Woman’s Mercantile and restaurant. ✅

We had a delicious breakfast and did a little retail therapy to mend our hurting hearts. 

But I definitely want to go back to do a Ranch tour! 

All my love and safe travels to my family heading back to their homes. 

Love big and don’t waste a second, because tomorrow isn’t promised. 

#cheers2Ron

Love,

k

Latest chapter in my new book

 Sometimes life just isn’t fair. 

That is the working title of the book I’m writing. And only because “the names have been changed to protect the guilty” I probably need to write under my nom de plume and can wait. 

But a book about life being unfair, that’s one I’ve been writing in my head for years. I’m not bitter, because what’s the point?  I don’t want to be one of the miserable people I come across who have been dealt a crappy hand and then want the world to pay for it. Or at least hear about it and live in a “poor me” state of existence. 

Cause let me tell you about crappy hands….if there were odds on my latest one, most people would stick with the house. But I’m here to tell you, I’m gonna see that cancer card and raise it. I’m betting on me. 

In case you can’t tell, I got my PET scan results back. 

And they are not good. 

My bone mets have progressed. 

A lot. 

All the previous spots are showing activity- thoracic spine and lumbar spine, as well as areas in my pelvis. 

But now, it’s showing active in my cervical spine, more spots in my thoracic spine with a large lesion on T4 and T8, in my lumbar spine L5 is the worst. 

Add to that:

•my proximal bilateral femurs (upper thigh bones on both legs)

•ischium of pelvis (near the same place I had cryoablation in 2020)

•all over my pelvis 

•left clavicle (collar bone)

•left scapula (shoulder blade)

•sternum (breast bone) 

•bilateral ribs 

And….3 spots were found in my liver. 

Yep, sometimes life just isn’t fair.  

But, we also found that with the blood test I had done, that the progression is due to a mutation of my cancer. I now have the ESR1 mutation, or Estrogen Receptor 1 mutation. This often happens in advanced breast cancer that is already hormone positive and tested with an aromatase inhibitor, which I have been for the last 3.5 years.  Basically my cancer is a sneaky bitch and figured out a way around the treatment that was working. It was only a matter of time before the line of treatment I was on quit working. My Oncologist said she usually sees about 18-24 months of progression free time with the regimen I have been on. I got 41 months!  That’s pretty darn good. 

I also have the PIK3CA mutation. The PIK3CA gene holds the instructions for making a protein called p110 alpha (p110α). P110α has many functions in the body, including:

• cell growth and division
• cell movement
• producing proteins
• transport of materials in cells
• cell survival

A mutation in this gene can cause cells to divide and replicate uncontrollably; commonly breast cancer. 

Both of these mutations need to be treated with targeted therapy. And I have 2 options: 

Elacestrant -brand name Oserdu

Or 

Piqray -you’ve probably seen these commercials. 

Piqray is a hard drug-side effects can be very brutal; nausea, vomiting, diarrhea, bone pain, severe fatigue, loss of appetite, elevated blood sugars, and more great ones. 

Elacestrant just got FDA approval early this year. And the side effects are less severe. 

Both are targeted drugs that can work on the bone mets as well as the new liver mets. So I’m going with the Elacestrant. And if it doesn’t work, I still have the option to do the Piqray at a later date. 

Both are oral meds! And I get to stop all the injections I’m getting now. 

I know, not what anyone expected, least of all me. But, it is what it is. Literally. 

And there is nothing I can do about it,

Other than cure cancer next week. And believe me, if I could, I would. So for now I’ll have my daily 5 minute pity party and move forward. 

What’s that saying about not being able to control what happens to you, only how you react to it?  Yeah, all I can control is how I react to this news, and it sucks, but the more time I spend wallowing in sadness and self-pity, I’m missing out on life. And I refuse to miss out on whatever life I have left. 

I got to attend my niece and nephews grad and grad parties this weekend, and see some people I haven’t seen in a while. And I have more plans this week to keep on living life. But I am putting together my serious bucket list in the meantime. 

I do see my Onc on Thursday to chat about starting this new med and what my options are for pain control of the bone lesions. Possibly radiation, kyphoplasty, who knows. I just know the pain gets harder and harder to handle and taking morphine around the clock doesn’t work for me. So we will see what she suggests. 

I apologize if you’re reading this and hearing about it for the first time here, actually not many people know at all. My kids and sisters do and that’s it until now. This is the easiest way to tell the most people and I’ll be honest, I don’t like the tear filled eyes and looks of pity when I tell people in person. If you want to scream and yell and break shit-I’m totally down for that. But please don’t feel sorry for me. My kids, yes. They shouldn’t have to deal with this on top of all they’ve dealt with their whole lives. Again, sometimes life just isn’t fair. 

NOT F*%$ING FAIR. 

go break a plate, you’ll feel better.  

Believe me. 

I do want to share that my Uncle Ron was greeted in Heaven by his Mom and Dad, sister and brother on Friday. He was surrounded by his immediate family and listening to music. Exactly how I’ll always remember him-music was his passion. As well as his love of service to others and the Lord. I have no doubt we’ll meet again someday, so I expect you to have that guitar and your beautiful voice ready for me Uncle Ron. 

To my Aunt Amy and cousins; Luke, Nicole and Seth, Laurel and Danny, Holly and Justyn and kiddos-I’m so sorry for your loss. May your memories bring you some peace and comfort. 

For my Mom and Aunts Jeanne, LuAnn and Michelle-I love you all and am sorry you are laying another sibling to rest. 

Please keep them all in your prayers in the days to come. 

I’ll keep y’all updated on my treatment plan. But in the meantime show some kindness and grace to those around you, and especially to yourself. I know I am. 

And I’m also ready to keep fighting, so if you’re a gambler, bet on me. 

Love and hugs, 

K

So far in 2023…..

 It’s been a while since I updated so I figured I better do it before summer is here!  In January I had my right shoulder replaced-surgery was successful and I’m almost done with my physical therapy. My surgeon (in STL) was able to just replace the part of my humerus that was dead, and leave the fossa it sits in. I’ve gotten a lot of my range of motion back-I can eat with my right hand, and reach up and take my sunglasses off my head, as well as wash my hair with both hands!  I’ll never get full capabilities back that I had before all this debacle started and I’m ok with that. What I have is so much better than what I had this time last year, and I don’t have the pain anymore. Win-win!

My bionic shoulder

Brian and the boys and I moved back to KC in March-yay!  In the words of Dorothy; “There’s no place like home.”  It’s been nice being back. We haven’t had a chance to spend time with all our friends, but summer is just around the corner….

Ethan turned 19 the end of March and it’s back at his old school Maple Valley. He loves it other than getting on the bus at 7:15am. Sometimes he’s a little crabby in the morning-he’s not exactly a morning person…..

Hailey graduated from Physical Therapy school in April and was awarded “Outstanding PT Student” out of her whole class. She was also the commencement speaker for all the graduates in the PT, OT and SLP programs. We are so proud of her and can’t wait to for her to begin her career. She is staying in Dallas and hoping to get a job working with Pediatrics. So many people from her ‘Village’ made the journey to Dallas to celebrate her and we are grateful for the support and everyone who made the trip. She graduated on my Birthday -29th Birthday of course-so I received the best gift ever!  

I met my new oncologist at KU and I love her! She spent an hour with Brian and I at my first appointment. We discussed potential meds I may need down the road and treatments available. She actually stopped one of my drugs, to give me a little break from it. She also decreased the dosage of my oral medication to help with side effects I was having. She made a statement that echoes how I feel about my cancer ;

“We shouldn’t be living to treat our cancer, we should be treating our cancer to live.” 

 

She also intended to push my CT scans out to every four months instead of the three month mark I was getting them. But never a dull moment with us, and the very next week, my tumor marker labs came back, significantly increased. I had my CT a week ago, and it shows potential progression of my bone mets in my thoracic spine, and in my pelvis.  Unfortunately, I have also been having pain in those areas. The next step is a PET Scan to be done this Wednesday. So, if you’ve got some prayers or good juju to send my way it would be greatly appreciated that these areas are not progression. I will keep everyone updated when I know the results. 

Also, please keep my uncle Ron and his family in your prayers as he was recently moved home from the hospital on hospice to be with his loved ones. He has always been a huge supporter of mine and the bald kid over the years. Always had an encouraging word and prayer for all of us.  And he’s one heck of a singer and guitar player. Please say a prayer of peace and comfort for all of them in the days to come. 

Love, hugs and prayers,

K

Love and hugs,

K

NYE 2022

The ball will drop and the clock will strike twelve in a few hours and 2022 will come to an end. 

It’s been a year. 

January brought us a Razorback🐗 win in the Outback Bowl, a 4th straight AFC Championship win for the Chiefs 🏈and a trip to KC to see ‘Wicked’ at the Music Hall with my friends. 

February we took a trip to Dallas for Hailey’s White Coat Ceremony for Physical Therapy school. (She’s almost done, yay!)

This trip involved a party at Las Palmas-the restaurant of one of Logan’s fraternity brothers. If you ever get to Dallas-it’s a must-go!  Cadillac fajitas for 2 with bone marrow butter and the Diablo margs are my recommendation!

In March I took a ‘Cousins Trip’ to Estes Park, Colorado with my sister Kim, ‘sister-cousin’ Angie and cousin Tony that involved a ghost tour at my fave hotel, The Stanley, and muumuu wearing trips to the Safeway.   I also got a chance to make it down to La Junta to see several of my Aunts and Uncles and eat some incredibly delicious Mexican food. We also said goodbye to my Uncle Tom that passed away unexpectedly. 

Ethan had his two eye surgeries in March, removing his lens and replacing them with implants to get rid of his glasses-forever!

And the bald kid turned 18!!!!

April brought the beginning of my shoulder debacle with a surgery and 30 days of IV antibiotics.  

Also a belated birthday party for the bald kid, including a visit from his Grandpa and Grammy Teresa to celebrate him. 

Easter came and since he was 18 the egg coloring party with sissy just wasn’t his thing anymore apparently. 

Hailey was also here in STL with us for her first clinical rotation at an outpatient PT office. 

I turned 51 and had a small group of amazing people celebrate me in KC. I also got to do what I love and and lead a mobile sign-painting party for my step-mom and her super fun employees! 

May brought our stepsister Marlene and Olav from the Netherlands to STL and we got to meet them for the first time along with Ethan’s cousins, Tom and Nicole. 

Brian and I also got to watch our beloved Royals play those red birds…of course we lost. Still true blue fans! 

My nephew Taylor graduated from Indiana University, which I missed because of my shoulder issues AND a nasty bout of pan colitis and anemia that landed me in the hospital in June. 

Also in June Brian, my sister Katie and I made a short trip to Texas to see my Aunts Mici and Kathy and lay to rest the sweetest woman, Kathy’s mom- MaryLou. It was good to see them, and our other ‘Texas family’ along with my cousins Chris and Christina from Chicago and their 3 kiddos-even with the bittersweet circumstances. 

I also made a quick trip to KC for Father’s Day and to watch my ‘niece’ from Colorado play softball. (Who btw is going to play softball at Dartmouth next fall!)

Brian and I celebrated our 20th wedding anniversary June 29th! (who would have thought we’d last this long???)

July brought our cousins Mike and Sydney to MO.  Hailey and Logan joined us from Dallas to help us introduce the NOLA peeps to the best bbq ever at Joe’s-where we met Chiefs player Chris Jones, and drinks at the coolest Irish Pub in Weston, O’Malley’s. We went to the Kenny Chesney/Old Dominion concert and had wings at The Peanut. It was a short but sweet trip and I can’t wait for them to come back and bring their little guy. 

Brian’s sister Amy and her boys came up from Oklahoma for a few days and we had a blast spending time with them. 

I also saw a new Ortho doc and got the fabulous news that my shoulder was now dead (avascular necrosis) and I need a replacement. 

And the middle boy Parker turned 23!! 

In August we took the bald kid to Dallas to be Hailey’s ‘show and tell’ for one of her peds PT classes. Ethan loves being the center of attention, and we really enjoyed meeting Hailey’s classmates and professor.   We visited the Perot Museum in Dallas and it was fun for all of us-especially the bald kid. 

Being in Dallas requires dinner at Las Palmas-and again-fabulous! 

That night may have also involved a 40oz and a traffic cone…..

The end of August brought another trip to KC for my baby sister Kate’s Bachelorette Party. Hilariously fun day with her awesome friends and new family! 

The time had finally come….in September my baby sis Katie got hitched to Aaron!! What a weekend it was-lots of family made it in town to her wedding and she made a beautiful bride. It was an amazing time and I’m so glad we were a part of their special day. And I inherited 2 new gorgeous and sweet nieces-Taylor and Madison. 

Hailey Jayne turned 26!

And we had a great time selling some Salvage 2 Chic stuff at our friend’s event;

The Rough & Rigid Monster Bash.  So thrilled to be invited and can’t wait for 2023! 

In October we took a trip to Puerto Vallarta, Mexico for my sis and bro-in-laws “Framilymoon”.  It was a week of sun and sand and cocktails and relaxation and lots of laughs. I even got to check off ✅ a ‘F*ck it Cancer Bucket list’ item of swimming with the dolphins and a sea lion. 

November brought another opportunity to check off a bucket list item with a trip to Paris, France and Amsterdam with our dear friends the Williams. It was truly a once-in-a-lifetime experience for me and I’m so grateful and thankful they invited us.  Much like our trip to Mexico it was full of cocktails and laughs-lots and lots of laughs!  The Eiffel Tower, the Seine dinner cruise, the Arc de Triomphe, the Louvre, Notre Dame, Jim Morrison’s grave and more made Paris a non-stop adventure from the minute we landed. 

Amsterdam was much more chill and relaxed and we really enjoyed it. Especially getting to have dinner with Marlene and Olav! And the Red Light District, the Anne Frank house, the boat canal tour, the Heineken tour, the cheese and wine and beer and the ‘coffee house’ visits gave us a little break from the fast-paced city of Paris. We would definitely go back! 

December came, and I can’t believe the year is almost over. Mother Nature jacked with lots of people’s plans, but we did make it to KC for Christmas with the family. And then back to STL for our celebration with family here. The ‘Great Big Ball of Glory’ was its biggest ever at 

19 lbs! And the murder mystery game I wrote-and then accidentally deleted-but didn’t tell anyone until I got them to dress up in ridiculous costumes and read their character descriptions aloud…..was a hit, but needs to be finished. 

We surprised the kiddos with a Christmas gift trip to the Dominican Republic in September ‘23 -even the bald kid!

And my darling hubby turned 54!

Like I said, it’s been a year. 

I’m scheduled for a right shoulder replacement January 17th. My Ortho doc is going to try and do a hemi-arthroplasty, where he just replaces the dead humeral head and upper humerus and leaves the glenoid cavity. But he won’t know until he’s already in there. I’m dreading the PT following this surgery, especially since my daughter and bossiest child around will be here for a few months for her last clinical rotation at Shriners. She’s sure to keep me on schedule with my exercises. 

My cancer lesions have been stable all year, with no new ones-yay!   But I started having headaches recently, so I’m getting a brain MRI to start the new year. They will be doing a specific tumor protocol and only 2 locations within the BJC imaging system do that protocol so we couldn’t get me in until the 5th. Along with the headaches, my tumor marker labs have jumped way up out of the normal range by 33 points. The only possibly positive thing about that is these labs are notoriously unreliable, and can be attributed to inflammation or other illness-and my shoulder mess could be causing those to be so high. 

As I finish up my 3rd year with stage four breast cancer, otherwise known as the ‘average median survival’  I would be lying if I said I wasn’t a little nervous about this MRI. We all know how much I love (hate) MRI’s to begin with….good thing I’ve got some Ativan and wine from France to get me through…..

But I intend for 2023 to be just as exciting and fun and crazy-hair-on-fire busy as 2022 so Momma ain’t got no time for a brain lesion!  So if you could send up some good juju for me that these headaches are just that-and not brain mets, I would greatly appreciate it!  If having stage 4 cancer has taught me anything-it’s that I can’t take one single day for granted. 

not. one. day. 

I look back on 2022 and cherish the memories it gave me and my loved ones. Even with the heartbreak and loss, it was a great year, and another one I survived. Being that I’m starting year 4 with MBC, I’m exceeding the ‘norm’ and ‘average’ 

(like those words have ever been used to describe me!?) I feel like I’m living on borrowed time. 

But then again, aren’t we all? 

I hope you and yours have a Happy and Healthy New Year and 2023 brings you all you wish for! 

Love and hugs

-k