Final

 Well Mat here again. Kim has taken control of her destiny as usual and things are moving much faster than we expected. She stopped chemo and flipped the switch apparently to the next thing.

Since I made the last post her body weakened immediately, we've now got her in bed full time, hard to rouse, but as comfortable as we can make her. She's already not talking or taking food or drink.

So I have to drastically revise the timeline now to most likely she'll make it to this weekend but not past it. I'm so sorry to have to relay that after giving a somber but more optimistic guess in the last post.

We have so loved seeing all of you following her journey and inspiration and knowing of her inspiration to you. Thank you for that, and all of the support, prayers, and good energy. She has thrived because of that, and is so beautiful today with all of that light shared back and forth.

Hopefullly I'll be able to post more, if not this weekend then for sure next week, especially with information on how we plan to celebrate and memorialize her. Love you all, Mat

Update from Mat

 Okay this is Mat here, commandeering Kim's Blog updates to give you all an update as she really hasn't been up to it the last little while.

After our delightful Phoenix trip we continued on her rest weeks from Chemo. We were given tickets to the Tab choir concert, which she didn't end up feeling up to, but Brooklyn and I loved it. A few days later we did go to Peter Breinholt's Christmas concert which was awesome awesome, and she got to talk to him afterwards. I introduced her again to him as his 'Cardiac Arrest Fan', and he immediately remembered and was glad to see her.

The next week was also a break from chemo week, but there was simply not much recovery going on. We kept coming close to having another fall as she was getting more unstable and light-headed. Plus with all the fatigue and long rests she was taking it just wasn't feeling like she could tolerate more treatment. The morning of Dec 22 (Friday), we went in to see her doctor. As we checked in Kim immediately said to the receptionist: "This is my last one- no more chemo". When her fabulous doctor came in to the clinic room she immediately hugged Kim, and we discussed for a minute the options of going on, and Kim repeated, "no, I'm done". I think her doctor both knew we would decide that and agreed, yet she would have done whatever we wanted. But pushing for more time through more chemo would have most likely resulted in harder and harder side affects. So in that moment I think all of us felt good about that decision and felt grateful to be leaving without an infusion.

And then we got home and the emotions of passing that milestone hit us. The rest of that day into Saturday were hard emotionally, and then more health concerns seemed to pop up. Pain, nausea, unsteadiness, no appetite, constipation, waking up in the night, etc., all hit at once. By Sunday it was obvious to us both that I could no longer do it all, and we texted a good friend who works for a hospice company. Kim's speech is even a little slurred right now, but I am hopefull that with hospice's help we can even out these symptoms and have a much more peaceful time. Our previous experience with hospice was so good, and I'm hopeful the shifted focus from treatment to quality of life care will really help for the time we have left.

One thing the doctor went over with us is that with the 1-2 tumors in her liver their size is actually a good thing. Instead of lots of little tumors gumming up the whole liver she has healthy tissue around the tumors that is still functioning if that makes sense. That holds the promise of more time. No medical professionals have given us an estimate, but her doctor asked Kim how long she felt she had, and she said "I think 2-3 months" and her doctor mentioned she often sees her patients call it pretty close. There have certainly been moments this weekend where my mind went racing to the idea that its imminent, any day now. But I think we have some more time with hospice's help, different medication goals, and support.

She will still love visits, just check with me (801-712-5018) and we can figure out the best time.

Also to end on a Christmas note, we did have a terrific Christmas day despite it all, where Kim gave our kids Monster Minki blankets that they can treasure and get a hug from her anytime they wrap up in it, as well as Shutterfly books she created of all the photos we have from their Camp Kesem experiences for the past 14 years! It was so lovely to watch them open those 2 gifts from their mom.

Love you all, Mat

Activities

 I'm so far behind, I should just start with more recent stuff. Mat and I have been looking for an activity every week, to keep us (me) busy and engaged in the day to day. This month we went to Audra McDonald, the Messiah sing-In, out to lunch with a handful of friends, had a chat with Dr. Buys about what I want treatment I want to look like going forward. At our last group, she came up and asked me what color my urine was (we're big kids, we can handle that word, right?). I'll tell you, anywhere from clear to dark yellow-brown to orange. All I know is that orange (and other strange colors mean my liver is failing.) So, that also means that if you want to "see" me, better come quick! There won't be viewing, I don't want people to see at my shriveled, most sickly state.

We are in Phoenix for a handful of days. The funny thing is that my cancer friend, Ines, husband and daughter are also here for a handful of days! I haven't reached out, I'll let her vacation in peace. We are on a similar cancer path--except she's been doing it longer than me, both trying to make the most of a terrible situation.

Tomorrow we are going to see my aunt Carol Barson Gardner, oldest sister of the Barson clan, and two of her daughters. These are salt of the earth people, some of the best I know. My Mom was just younger than her. That will be so great to see them! It's been at least a few years. More tomorrow!