On to Treatment #4

Sorry it’s been so long for an update. I just don’t have much energy and I’m doing most of these text to type so please excuse the typos they drive me nuts so know that they would never be me doing them. 

After meeting with Dr. Satelli and realizing we’re both not on the exact same page, we agreed to disagree and move on to treatment number four.  This new drug is called Enhertu and it was originally created for patients with HER2 positive breast cancer. My breast cancer is hormone positive, so not the same. But I do fall into the category of HER2 low. A study was recently done on patients that have always been considered HER 2 low or negative utilizing Enhertu as the main chemotherapy drug. And it has had pretty positive results in HER2 low patients.

We’re going to hope for the same thing for me. In the meantime, I had some things I needed to do to prepare to start the Enhertu. It is an infusion drug. I will take it once every 21 days. I will lose my hair. So took about that my niece shaved it the other day, so I beat that bitch to the punch line. 

I have to have an echocardiogram tomorrow because this can be heart damaging. When I saw my NP, Jennifer, she was very worried about my increasing nausea. That wasn’t being handled by my meds. She was concerned it was coming from the liver tumors. Whereas typical nausea meds don’t help in that case,  she prescribed me a new drug, which is actually an old drug but one that seems to work really well for people that have liver lesion related nausea. And of course there’s a nationwide shortage on it. Yay. Sam’s Club, fortunately had enough to fill a month for me so that will get me through the first two cycles. If there still a shortage we’ll just change the dosage. Because my labs are so low right now as far as hemoglobin, red blood cells and platelets, I will have a lower threshold for chemo side effects from this drug. Basically meaning that people whose counts are in normal range would suffer less severe side effects than I likely will. Jennifer didn’t want that to be a concern for me so I decided to give me some fluids and nausea medicine and office yesterday and let it run over an hour. Let me take a nap and I felt much better afterwards. If we can stay ahead of the nausea, vomiting, puking stage, then hopefully when I do get to that point, it won’t be as tough. Not a lot of major side effects with this drug other than the ones I’ve discussed above, which I am happy to hear about. 

My insurance is working on approving everything in the next couple days and if that works out the way, we expect I will go in Friday to the cancer center have some labs drawn. There are specific labs that have to meet certain levels before I can be given the Enhertu and they need a couple days for some of those to come back . If everything is good, I will get my first dose of Enhertu next Tuesday. Keep your fingers crossed. I’m looking forward to doing anything I can to get more of this cancer gone and get some energy back to fight. 

ps- just got the best news ever from Hailey….. she’s an official doctor of Physical Therapy! Found out she passed her boards today! Congrats, Dr. Ladner!

Love and hugs 

K

Double Vision-and not the song lyric type…

 While we were watching the football game on Thursday night, everything was fine. I was reading something on my phone and then looked up at the television about 7 feet from me. Everything was double vision. There were lots of football players on the field. No matter what I did. I couldn’t shake the double vision, unless I covered one eye, right or left. Covering my right eye and trying to just look with my left eye felt more natural. My right eye felt like it lagged when I looked right to left or up and down. I didn’t have any other symptoms, and I don’t have great far vision anyway, so I didn’t pay much attention to it, and just decided to go to bed. Once in bed, I could watch a movie on my iPad, and as long as it was no further away than about 18 inches from my face I did not have double vision. But when I woke up the next morning, it was just as bad as the night before, almost worse, and was making me sick to my stomach. So I called my Oncologist, and she said I needed to go to the ER. 

Well, if you’ve ever gone into an emergency room and start talking about double vision and issues like that, you know that you typically get routed as a stroke protocol.  Which I did, and I was OK with as it means things tend to happen a little bit faster than normal. And it brought one of my most favorite ER docs, Brandie, Neidens, to my bedside. And remember before when I talked before about the “ where your care is personal” thing? Well, that’s a North Kansas City hospital motto. And my nurses sure thought it was weird when my ER doc gave me a hug before I went to CT until they realized we knew each other.  CT fortunately showed no major mass, lesion or stroke in my brain. But between the double vision and the other symptoms I’ve been having for the past three weeks. It’s definitely bought me an admission to do a more in depth MRI of my brain and neck. 

Other symptoms you ask? How about extreme fatigue to the point that I am barely able to get out of bed and go downstairs to the couch every day before I’m exhausted and my heart rate jumps to 150. Or the fact that I’ve lost 33 pounds in about four weeks due to lack of appetite, nausea and vomiting. The terrible epigastric pain that seemed to come hand-in-hand with the Xeloda-the latest chemo I have been prescribed. AND, Not to mention my plummeting red blood cell count, hemoglobin, and platelets. Which I have been messaging my oncologist about for at least the past two weeks, and not really getting any good answers. 

The hospitalist made it around about 2:30 in the morning and started putting in her orders. Early the next day, my sweet friend Gina came and got me for my MRI which happened to include my brain, neck (including carotid arteries), CSpine, T-spine, and L-spine, all with and without contrast. That is about a 2 1/2 hour MRI visit. Fortunately, my nurse understood my loathing of the MRI machine and loaded me up with some Ativan and morphine. By the time my imaging was done I felt like I had only been in there for about 20 minutes and not the nearly 3 hours I really was. Then it was off to ultrasound to check out my liver and check my legs for a blood clot due to the weakness I’ve had with them recently. 

Ultrasound of my legs is negative-no blood clot.

The ultrasound of my abdomen showed much of what we already knew about the metastasis in my liver and no big new changes.

The MRI of my brain and neck show beautiful carotid arteries with no narrowing and no sign of lesion or mass in my brain or neck other than an old stroke. 

The MRI of my CSpine shows degeneration and osteoarthritis, with some spondylosis and neural foraminal narrowing at several levels- otherwise not great in the neck.

The MRI of my C-spine, T-spine and L-spine did show that the cancer is most likely in my bone marrow now. This makes a lot of sense when you think about my symptoms over the last four weeks which is about the same timeframe my labs have been dropping. A lot of times the labs correlate with the MRI, showing cancer in the bone marrow and in my case it totally makes sense. 

From what I understand from the oncologist that was on call, there’s no special treatment for cancer in the bone marrow, but we do have to treat the cancer. And I have not been on chemo consistently for over a month due to the horrible side effects. 

 He felt that was a decision I would need to make with my regular oncologist with whom I have an appointment tomorrow.

He did give me an iron infusion to see if that would help with the weakness, and bring any of my labs up. It helped very little with the weakness. I did not bring any of my labs up. 

Back to the double vision, I ended up having a lumbar puncture to make sure there are no cancer cells in my cerebrospinal fluid. Some of those results can take up to a week to come back, but so far so good. And the ophthalmologist came and dilated my eyes to make sure he could see in my eyeball and my optic nerve and there are no lesions or masses there. The double vision can end up being caused from something viral, it can also be a syndrome due to my cancer that again, you only get rid of by treating the cancer. Neurology feels that it will go away on its own in 4 to 6 weeks. My oncologist could have the lab results as early as tomorrow so we may know something then. If that’s all negative, it’s most likely viral. 

About the bone marrow cancer… We should find more out tomorrow from Dr. Satelli. In the meantime, I’m hoping to get a red blood cell booster to help with the extreme fatigue that I have. Because those of you that know me know that I don’t lay around and do nothing very well. But the fact that we’ve had to put a chair in my shower, have someone wash my hair over the sink, need help getting up and downstairs, and spend the majority of the day in my bed, or on the couch, tell you just how awful and weak I feel. 

My wonderful husband has picked up all the slack around the house from cooking and cleaning to completely taking care of the bald kid because I simply cannot right now. 

I feel helpless and I hate feeling helpless. I’m hoping we’ll have a plan of care tomorrow and I’ll keep you all updated on what that is. In the meantime, if you could send some prayers and good vibes for increased blood counts, less weakness and double vision, it would be greatly appreciated.

Love and hugs,

K

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