Not the news we wanted, but…..

 My appointment with Dr Satelli last week did not yield the answers we wanted, but I do have options.  It seems the Orserdu I was on for the last 3 months have kept my bone mets stable with no new growth or lesions. But…..(always a but) it did not attack my liver mets like we were hoping. In fact, there are now more liver mets and the previous ones have all doubled in size.  

So, it’s on to my third line of treatment. I will be starting a new drug called Xeloda as soon as insurance approves and it can get ordered. My Oncologist also wants me to go through a ‘wash-out’ period of about two weeks to ensure the previous drug is all out of my system and it’s reset and ready for the new one. 

Xeloda (Capecitabine) is an oral chemotherapy pill-whereas my last two lines of treatment were estrogen targeting drugs. I’m still not having any liver function issues-which is GREAT-but we can’t risk that potentially happening while waiting to see if the Orserdu will start working. 

Xeloda comes with its own lovely side effects being that it is truly a chemotherapy agent. High likelihood of severe nausea and vomiting and dehydration secondary to that. So if my husband thought I was crazy with my drink cups around the house and car before……just wait.  It can also cause some skin toxicity which typically results in the extreme sloughing of the skin of the hands and feet-time to start loading up on my aquaphor and Vaseline!  Good thing I’m not working anymore and washing my hands a bajillion times a day. They would really be a mess. Other than that-there can be some diarrhea, loss of appetite and kidney issues I’ll have to watch closely-hence the need for increased hydration too. 

I have to admit I am super deflated about already having to switch meds after only 3 months of the Orserdu. It really had minimal side effects and didn’t hit my immune system as hard as my first treatment. BUT-on the positive side, only my liver mets increased and not my bone mets, so at least we’re not fighting BOTH of those from scratch.  

Not a long post today, because honestly I’m still processing this news and I’m mad and sad and angry and feel like crawling into bed for a week. But, (again with the buts) I really believe that projecting positivity, a good attitude and believing I can get good results with Xeloda is just as important as it actually working. 

So I’ll have my 5 minute pity-party (this one has been a bit longer than 5 minutes) and then pull myself together, put a smile on my face and march forward in this fight against this shitty disease. 

Thanks for fighting with me. 

Love and hugs

K

Last days of summer

 I can’t believe it’s almost September. Our summer flew by at record pace.

We had my sister-cousin, husband and ‘nieces’ from Colorado stay with us for a week. We loved getting to watch Livi’s last KC summer softball tourney before she heads off to Dartmouth to play softball. 

We also ate a lot and laughed a lot and made full-body size hand knit chunky blankets. I have to say I think Dustin’s is the best. 

I had my first experience with Reiki from my dear friend Michala. I was super skeptical initially, but my mind has been changed. Reiki is defined as “an ancient healing method that manipulates energy flow in the body”. As she worked on me, I had incredible feelings of energy movement from areas my mets are-like they were actually leaving my body. It was extremely relaxing. After my first session I slept for basically 24 hours-I didn’t feel bad, just tired. And not like an exhaustive tired, just tired. When I got up and around and moving a day later I felt better than I had in months. Months. And it lasted for several weeks. I’ve had another session with her since and need to schedule another soon!  If you want more info, I’m happy to put you in touch with her and her healing hands! 

In July we pulled off the biggest surprise ever and got 50 people in on Logan’s proposal to Hailey. 

Yes, Hailey, YOU are the only one who didn’t know what was happening. 

It was so special that Logan wanted Brian and I and his parents there for the actual proposal. One of the best days of my life getting to watch such an amazing young man ask my daughter to be his wife.  

We are so grateful our friend Brandi of BNW Photo was available to take such beautiful pics of the proposal. She’s taken our family pics for years and Hailey was shocked to realize it was her behind the camera-hence the look on her face…

Then we followed up the proposal with a Royals game (we won) with family and friends from as far away as the Netherlands, STL area, Chicago and Dallas. Again-everybody BUT Hailey knew what was happening!  It was so wonderful to be able to celebrate Hailey and Logan with our extended family! 

Ethan had summer school at Maple Valley-which he loved.  And lots of Doctor’s appointments with some of his old docs here at Children’s Mercy and a few new ones. He’s been super healthy all summer and look forward to him staying that way. We have some pretty great docs in his corner and other than being sad that his fantastic Ortho Doc is retiring the end of this year, we have been pleased with all of them. 

My left hip has been bothering me so bad I’ve been terrified I would end up with a pathologic fracture from the increased mets we found there in May. So my NP sent me to an Ortho Onc who did some imaging and gave me the all clear from a fracture risk. Though I do have pretty significant metastatic disease in that hip, greater trochanter, acetabulum, ischial tuberosity and proximal femur, the pain is likely related to inflammation from all of it. So he did a steroid injection in my hip bursa to see if we can get the inflammation down and hopefully quell the pain. I’m also going to have another steroid injection in the actual joint space of that left hip in mid-September.  So far, the pain on the side of my hip has basically subsided since the injection. And I start some PT, including Pool Therapy next week to help with strength and weight bearing. 

And last but not least, just last week I tweaked my neck putting on my shirt one morning. So badly that my right arm went numb with a shooting, shocking pain down to my wrist. A pain that would not. go. away. Even with anti-inflammatory, narcotics, nerve meds AND gummies….

I couldn’t sleep or basically do anything except lay around with ice and heat on my neck. I finally went to the ER on Sunday just to make sure I didn’t have any metastatic disease there that was causing the pain. I got lucky with one of my very fave ER docs (Dr Russell!) and 2 great CT techs to do my scan (thanks Sheila and Rachel!) and my super-fab Rad who read it (Dr. Van Tasell!) I have one lesion on C7 that has been there for a while which is not causing the pain-but rather the cervical spinal stenosis from age and degenerative disease is…ahem. I can’t even put my shirt on without some crazy shit happening. I mean, it’s not even a good story like I had to fight off a bear, or wrestle an alligator, but I digress. I did get some good meds and more steroids and my arm is already 100000% better than it was 4 days ago. And I’ve been an insomniac crackhead due to the steroids. Now to get an MRI to see the extent of the stenosis. 

In the meantime, Ethan started 14th grade this week and is still adjusting to his early days and long bus ride. And we’re just all trying to stay cool around here with the weather as hot as Satan’s fire-y’all do the same! Oh, and go Chiefs!  Home pre-season game this weekend, so I’m hoping for some cooler weather. 

I had my follow up CTs and Bone Scan last week and have a follow up today with my Onc to discuss. I’ll keep you all updated with the results!  keep your fingers crossed for good news and keep the prayers and good juju coming!  

Love and hugs, 

K

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