Journal entry by Chrystal Chartier-Wittenmyer —
Hey yall it has been a hot minute but a lot has been happening recently
So for a update!
I've been on Troldevy for over a month now and dang...... so far this has been one of the most difficult treatments. A number of unexpected trips to the clinic for side effect management and a week long break to recover from the side effects of the drug, but we are back on schedule and I think we have most of it under control. Feeling "good" is relative at this point.
My hair has fallen out again for the most part and what didn't fall out I shaved off. For anyone who hasn't experienced hair loss it's actually oddly painful. Vanity took center stage for a minute and I had my eyebrows tattooed! Best decision ever by the way! I'm 100% OK with being bald it's liberating and comfortable, but there is something about loosing eyebrows that I struggled with.
A couple weeks ago I had a PET/CT scan to set a base line of where exactly the cancer has spread. While the news wasn't great it wasn't unexpected either lungs, lymphnodes and bones (ribs, spine, and femur) the words they used were extensive metastatic spread.
I've recently has palative radiation on my spine and ribs in hopes that it will help with pain management.
Every 3 treatment cycles unless there is a notable change in pain/function I'll be getting scans to see if the chemo is working and to what extent. In this space it's kind of a guess and test routine. If a drug works you take it until the cancer becomes resistant to the drug, then you switch. So right now it's a waiting game. Fingers crossed it's working!
It does feel good to have a plan going forward if/when Troldevy stops working I've been accepted into a trial at Mayo clinic so we are proceeding cautiously with some optimism.
Pushing my physical limits is a new favorite hobby much to the dismay and frustration of family and friends ❤
It feels good to know I can still hike, lift, climb and work, and yes I also know I will pay dearly for it the next day/days. It really is astounding what the mind and body are willing to endure given the alternative, but I can say with all honesty right now it's worth it.
On the home front we faced a complicated move but it turned out to be an amazing opportunity to regroup and spend some time disconnecting from the chaos as a family. We moved from the amazing condo that we spent the last year in, into a friend's cabin in the woods. No internet, no TV, land and trails to explore. The kiddos and Chloe are living their best life chasing critters and building stick forts and playing board games. The biggest thank you goes out to friends and family that made housing, packing, moving and cleaning possible ❤ we truly couldn't have done it without help. In about a month we move again to a small cottage in Sister Bay! Walking distance to the beach! ⛱😎
Asking for help is something we're still working on lol. It's probably forever going to be my biggest challenge. Stubborn and independent to the core!
The distraction of moving and new experiences has been a welcome break from having cancer as the front and center life focus. Soon the bustle of the tourist season in Door Co will be in full swing and I have to say I'm looking forward to it this year! Our second vaccinations are in a few weeks and dang we are all missing our favorite humans so so much.
So cheers to longer days, sunshine, and spring.
Much love you everyone in our lives ❤
So for a update!
I've been on Troldevy for over a month now and dang...... so far this has been one of the most difficult treatments. A number of unexpected trips to the clinic for side effect management and a week long break to recover from the side effects of the drug, but we are back on schedule and I think we have most of it under control. Feeling "good" is relative at this point.
My hair has fallen out again for the most part and what didn't fall out I shaved off. For anyone who hasn't experienced hair loss it's actually oddly painful. Vanity took center stage for a minute and I had my eyebrows tattooed! Best decision ever by the way! I'm 100% OK with being bald it's liberating and comfortable, but there is something about loosing eyebrows that I struggled with.
A couple weeks ago I had a PET/CT scan to set a base line of where exactly the cancer has spread. While the news wasn't great it wasn't unexpected either lungs, lymphnodes and bones (ribs, spine, and femur) the words they used were extensive metastatic spread.
I've recently has palative radiation on my spine and ribs in hopes that it will help with pain management.
Every 3 treatment cycles unless there is a notable change in pain/function I'll be getting scans to see if the chemo is working and to what extent. In this space it's kind of a guess and test routine. If a drug works you take it until the cancer becomes resistant to the drug, then you switch. So right now it's a waiting game. Fingers crossed it's working!
It does feel good to have a plan going forward if/when Troldevy stops working I've been accepted into a trial at Mayo clinic so we are proceeding cautiously with some optimism.
Pushing my physical limits is a new favorite hobby much to the dismay and frustration of family and friends ❤
It feels good to know I can still hike, lift, climb and work, and yes I also know I will pay dearly for it the next day/days. It really is astounding what the mind and body are willing to endure given the alternative, but I can say with all honesty right now it's worth it.
On the home front we faced a complicated move but it turned out to be an amazing opportunity to regroup and spend some time disconnecting from the chaos as a family. We moved from the amazing condo that we spent the last year in, into a friend's cabin in the woods. No internet, no TV, land and trails to explore. The kiddos and Chloe are living their best life chasing critters and building stick forts and playing board games. The biggest thank you goes out to friends and family that made housing, packing, moving and cleaning possible ❤ we truly couldn't have done it without help. In about a month we move again to a small cottage in Sister Bay! Walking distance to the beach! ⛱😎
Asking for help is something we're still working on lol. It's probably forever going to be my biggest challenge. Stubborn and independent to the core!
The distraction of moving and new experiences has been a welcome break from having cancer as the front and center life focus. Soon the bustle of the tourist season in Door Co will be in full swing and I have to say I'm looking forward to it this year! Our second vaccinations are in a few weeks and dang we are all missing our favorite humans so so much.
So cheers to longer days, sunshine, and spring.
Much love you everyone in our lives ❤
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