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April 12, 2021

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 ❤

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March 04, 2021

I'm over due for an update.
The past couple weeks have been a whirlwind wind of calls, appointments, scans, bloodwork and logistics. (54 calls to doctors and insurance, 12 appointments, 3 scans, and 2 sets of blood draws, 8 sessions of physical therapy a minor surgery) it's like having a full time job you really hate.

The technical specs:
After much waiting we have a game plan to start with finally! Trodelvy next Tuesday it is a recently FDA approved option for metastatic tripple negative breast cancer. I was really hoping for something a little less toxic but if it works I'll deal with the side effects. The treatment is 2 weeks on 1 week off for a cycle. It's very hard on the immune system, gastrointestinal system and liver. 

Friends and family 
Wholly shit guys I love you all so fucking much. We've received a number of uplifting surprises recently and it just brightens the mood around here!.

We are fortunate to have this time right now. We don't yet know if it will be months or years, but being a pragmatic realist I'm always on top of the latest statistics so we can prepare for the worst and hope for the best. I'll spare everyone the grimness of those statistics. Preparing for life while dying is a interesting duality. It all feels so normal the day to day and yet this cloud kind of hangs over in the distance. It's a cognitive struggle we are all facing as a family. Lucas having to learn how to handle many of the tasks that are in my wheelhouse etc. 

I've finally began feeling some symptoms of decline after being off of treatments for over a month. Shortness of breath, chest pain, lymphdema, exhaustion. Hopefully treatment will alleviate some of them! The sooner the better! 

So this week will continue with the busy schedule, we are packing to move... again... 
Hoping for some exciting news on the house front so I'm accepting all the good vibes. More calls and appointments then we start round two next week. 

Despite the gray clouds we have an amazing life! 


February 18, 2021

Fuck Cancer!
This has been my mantra through my diagnosis and subsequent treatment over the last (almost) 2 years. Chemotherapy, surgury, radiation, more chemotherapy and immunotherapy, debilitating side effects and a lot of hope. The past couple of months we as a family finally saw a light at the end of the cancer tunnel. The treatment seemed to be working and we were on the prevention path with a clinical trial of Keytruda that was supposed to run for one year and reduce the chance of recurrence. This nightmare was supposed to end next fall. 

A few weeks ago I began having swelling and pain in my right arm, and after unsuccessful attempts to figure out the root cause a CT scan was ordered. The results of that scan were what every cancer patient dreads. 

Your cancer has returned and spread to other organs beyond the breast. 

Tripple Nagative Breast Cancer is the least common, most aggressive and deadly form of the disease. Treatments are limited and harsh. It typically spreads to the bones, brain, lungs and liver. Unfortunately it has been confirmed by biopsy that it has metastasized to my lungs and the lymphnodes surrounding the lungs. 

The past few weeks have been a flurry of scans, appointments and phone calls. We haven't yet began to truly process what lies ahead on this journey but it is devastating to be facing a unknown battle with a unknown end. 
That's the most difficult part of cancer, the unknown. We do know that this is stage 4 tripple negative breast cancer and the odds are not in our favor. We do know that there are clinical trials that I should qualify for and other treatments avalible as well. I have up and coming consultations with UW Madison and Mayo clinic to discuss options and find the best fit. Next week I have a surgery to move my port-a-cath (power port) to a more comfortable location on my chest, physical therapy appointments and dental cleaning in preparation for treatments. 

Now it's hurry up and wait, and if you know me patience is not one of my virtues. I'll be posting more updates as we know more in the coming weeks. 

The kiddos have returned to in person school today and are soooo excited. They are going to need a sense of normal as things progress. It's still a very scarry time for people like me in regards to covid, but weighing the risks vs. enefits I feel it was a good choice for them. 
Much love to everyone supporting us through this journey. We can not begin to express how thankful we are for each and every one of you.