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