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!

 Every once in a while a friend turns up in the most unexpected places and times. For Olivia and me it was first in our home ward, where I was obviously the superior one being 3 years older and wiser than her. But it really came together as young married people where we ended in a different “same” ward situation in Bountiful! We had boys that were about the same age. We started making lunches with each other when new ones came up that we wanted to try out. One day on her way out the front door, she exclaimed “I think we should be friends!” though I think that had already been predetermined by me.

Before she got to my house tonight, I thought about how do I say “goodbye for now” to a dear friend I’ve known so long? I’m not sure I nailed it, it’s just an understood reality. I’m sure we would have both ended up blubbering on the floor. So, for my “famous” college teacher friend who rocks her students at a Buddhist university in Boulder, Colorado, I’ll see you the next time our worlds collide and I’ll be SO HAPPY to see you again!

Chemo Skip

 So, today I skipped chemo. My body needs more than a week to recover from the side effects of Taxol. So I took it!!!

I met with Annie, social worker extraordinaire and had an amazing conversation with her. I’m going out on a limb by saying this … I think for the first time in my life, I feel content with who I’ve become. All my dang trials (and hundreds of hours of therapy) have made me a far better person than I could have created without them. I have a clearer understanding of so many things!

On my way out, I ran into a guy named Chris. He is a brilliant researcher, professor, and passionate about metastatic breast cancer … because he has it too! Yes, men can get breast cancer, although much less likely than for women. He asked me if my tumors were in soft tissue. They are. He said he’s connected with some immunotherapy clinical trials through the NIH (National Institutes of Health) in Washington DC. So he’s going to try to hook me up. Wow! I’ve heard that immunotherapy can have bad side effects too, but if it can slow down this dang cancer, I’m for it! Because my chemo doesn’t seem anxious to help me. Not everything they’ve given me over the years qualifies as actual “chemo”, but I’ve experienced the same side effects from everything I’ve done, regardless.

I came home and crashed, just long enough to give me the strength to make a pecan pie for our ward pie night. Technically it should have sat out 2 more hours to set up. There were 3 or 4 “judges” who decided on the top 3 pies. I came in 3rd place!!! Who’d have ever thunk it! The pie tin was wiped nearly clean by the end. I saved my last few bites for Mat.

All the Feels

 I wish I could think about nothing. I'd love to go to some remote place and sit in silence for hours at a time-and it can't be my bed. I hardly ever wear a hat, what's the point when I'm this many years into cancer? BTW, 6 ¼ years. I just need to go as long as July next year for our 30th anniversary.

There's an adorable little boy in the ward, maybe 1 ½ to 2 years old? One day his eyes went slowly up my body and stopped on my head. I asked him if he wanted to feel my head that was so different from everyone else. He slowly nodded a shy ... "yes" so I bent down and touched my head so he knew it was OK to touch it. I asked his older siblings if they wanted to touch it too. Both nodded a shy "no".

I do that sometimes so my bald is normal to kids who see me, maybe they'll be more brave next time someone offers their head for touching. I find that older kids are too cool or embarrassed to touch my head. It's like someone touching a pregnant woman's belly. Eek!

I've been obsessing about getting another pair of UGG winter boots. When we had our first dog, and I, as the human wasn't fully trained on how to do "dog" yet, that dang pup dragged one of my UGGs out the back door and chewed it to pieces. I kept those boots for longer than reasonable, because my sis-in-law sent them to me after my diagnosis. I loved those boots, wore them everywhere! I couldn't stand the idea of throwing one perfect UGG boot (and one chewed up UGG boot) in the trash! But that's what I did after accepting the fact that one boot was NOT bringing me joy.

Last night I was looking on Marketplace and found a pristine pair for half off the regular store price (which is obscene-don't google it!). They are the tall ones, worn twice. So I reached out to the seller who lives 30 minutes from me and told her I loved the boots I had, but I'm end stage cancer, and wasn't sure I could justify the cost at this point in my life, or even if I will live for them to see spring (that news flash is still forthcoming). She lowered the price and I'm picking them up tomorrow. Hooray!!!

No kids were home tonight, so we went to Olive Garden and ordered a spartan meal to share and save money. Our waitress came several times to make sure we were good, and we were, but I have taste distortion happening right now. How could Olive Garden not taste good?! Mat happily ate everything. Clearing my dishes that still had a fair amount of food on them? I told her about my taste distortion and that there was nothing wrong with the food, I just couldn't taste it. She asked us about dessert, which we in our spartan manner declined. She said, "I'm sending you home with some dessert, on the house! What would you like?" We'll be eating pumpkin cheesecake for breakfast. She was so nice, went out of her way to make sure we were happy. She got a healthy tip from us.

I had my CT scan today, had the results by middle afternoon. In a nutshell, The biggest problems are still in my liver. The giant tumor, previously 9 cm x 6 cm, is only one cm smaller. But there are new tumors in that general area as well. (More later!)

OK, here's the conclusion of my last post, what we're going to do about it. Dr. Buys called me to go over the results last night. She wasn't completely unhappy because we went forward and backward. I'm going to do one more 3 month cycle on Taxol, then get another scan. At that point we'll talk more about options, whether to stay on Taxol (because maybe it will work, we could try a different drug, or forget treatment all together-those are my options). I'm kinda at that point, friends. If fatigue makes "living" difficult, its a valid reason to stop. It will be a hard decision to make, I'm certainly not "living". I can get by on a very basic level at home, but I can't be on my feet very long, like making food would be impossible. I can't go shopping unless I know there are reliably charged carts, or a wheelchair I can use. That pretty much means Costco.

I didn't want to alarm anyone with this news, Mat doesn't like it when I talk about it. He has an idea in his head of what he wants me to try to get to. I have an idea of how much more I think I can handle. As I type this the bottoms of my feet feel like they're on fire - neuropathy. It's no cake walk. I'm so used to side effects, I hardly ever mention the less obvious ones. So, that is my life right now. There will be no drastic decisions for several months!

Amazing Friends!

 Might as well do a post, despite it being almost 2 am! I have chemo tomorrow, but Mat is my driver, so it’s fine.

I’m super lucky to have amazing friends who make sure to keep up with me! Last Saturday I called one of my only friends left from high school (not meaning the are dead, but I’ve lost track of them!). It has been years since I saw Glenda! She’s lived in Farmington her whole life, and why is it so hard to connect?!? L.I.F.E. happens. She owns a cute house in Farmington, a money pit like the rest of us! She’s hardly changed, except the gray that’s coming through her gorgeous dark curly locks! We talked for 3 hours at The Habit in Station Park, not really ever slowing down … but when it’s time to go, you know.

I went to lunch today with Shauna who I share red hair with, and damn breast cancer, and we both have families that didn’t turn out QUITE like we always imagined! I met her the first time around, when the idea of switching to a vegan diet seemed like the golden ticket! We both gave it a good try, I forced the meal plan (in a positive way ) for about 2 years before I threw in the towel. It’s hard to want to feed people when they grumble the whole time about eating what you prep for them! So I switched my ideal cancer diet to the “eat whatever I want” diet. My weight is going down and the cancer cells are trending up! So who in the heck cares!

So, friends, I’m going to be around for a while yet, so come visit me! Sherri,

Colleen, Deneice, Wanda- at Kimball Junction?? Let’s do lunch or something. All are welcome, of course! And Pretty much anytime of day or night (because it’s now 3 am) and I’m still writing! Best hit the sack though. I love that I have so many people who follow me and pray for us!!! LOVE is the understatement of the day!

p.s. I forgot one or two. Jorge Anette Dennis randomly brought dinner a couple nights ago, which was so great! Jorge is the man who ran to my aid when I was first diagnosed (2009), giving me a giant bear hug and telling me everything would be Okay, to trust that HF does keep his promises to his beloved children!

Lastly, the Alaska Annette who came to visit her grand babies, but always saves a day for the “Bountiful friends”. I’m lucky to one one of them! She wanted to try out “my favorite” Indian food. Mambai House, Malai Kofta medium heat with garlic naan and throw in a mango lassi if I’m lucky!!! Royal India in Bountiful has killer Malai Kofta too.

A Funny Thing Happened...

 A funny thing happened while I was out dropping off a few things tonight. I had been at my friend, Sarahs, then went south on Legacy parkway because my next drop to my sister in NSL. I realized real quick that I pulled in from Hwy 89 to Legacy right behind my sister, who had been in Morgan with family. I know their car and that she would be driving, not Michael. I knew it was them. So I carefully tried to get their attention, to no avail. They turned into their neighborhood, but turned up by Wasatch Peak and pulled over on the side of the road. So I pulled up next to them and unrolled my window--then she saw who I was! She said her next stop was going to be at the police station, but it didn't get that far. So I followed them the rest of the way to their house. Funny: I recognized them immediately, in their car, but my shiny head and the gray Honda Pilot I've driven for years didn't clue her in. I told her she was going a bit too fast on Redwood Road, but I'd let it slide this time. When she said I should come back in visit again, I said "You gotta make it a little easier on me next time!"

Best News Ever!

  I just saw the tumor marker result from today’s bloodwork. 425!!! Down 335 from last month’s 755. That means Taxol is working to shrink those dang tumors! That doesn’t mean I’m out of the woods yet but it’s great news!

I started my 4 week cycle on Taxol today. I also saw Dr. Buys who is so supportive and caring! She thinks the tumors are shrinking because my abdomen isn’t so swollen and I’ve quietly thought the same thing. She said her entire team has been so worried about me. I have so much support coming from all sides, I’m so grateful! I just needed that “magic bullet” that would get things back in control.

We sold our travel trailer that was such a blessing to us after my diagnosis. We got to go on those long trips all over the country and into Canada twice. We determined that our days for far away road trips was over. This last trip to California showed me that, even flying to get there was so stressful for me. We’ll do an occasional one-nighter closer to home. I decided we have to go to more local plays and musicals too, more fun things close to home.

Maddie is getting married in a month, which we are thrilled about! She had her final dress fitting today. We went down to see it on her. I offered her my Moms wedding dress because it was handed down to me (by default-none of my sisters wanted it) My Mom was 5 ft 10 in and skinny as a rail when she wore it. Maddie is 5 ft 1 in, so some adjustments had to be made. She’s very happy with the finished product - it’s beautiful on her! I guess Mat took all the pictures, or I would post one here.

Cali!!

 Mat and I are in Cali while Brooklyn and McK hold down the fort. I think they are so silly for wanting to stay home because we have a great time! They’re missing out! We’re at my favorite beach north of San Luis Obispo. We were here two years ago, the beach has changed with all the water/flooding they’ve had. We’ve had some funny conversations because we don’t remember things the same way! The beach has totally changed appearance, the terrain, the rock piles, and the spot where I spent hours sifting through the rocks to find the perfect ones, is underwater now. But there are still a gazillion rocks to be explored. That’s tomorrow’s project. This “lake” that’s now sand/land locked wasn’t there two years ago.

I was nervous about going on a trip when a week ago I felt so rotten from anemia. Turns out your body does need food to function properly! Between no appetite, taste distortion, and mouth sores, I just wasn’t getting enough food or water for everything to run smoothly!

I start my third (or fourth?) 3 week cycle of Taxol on Friday, my next scans are the end of October. I just passed my 6 year anniversary since my stage 4 diagnosis. That’s pretty good! Their “average” for me was 4-5 years. I’ll take all the weeks and months I can! I’m still working on histories, legacy stuff and hope to make fast progress on what’s left to do. Mat keeps a list of “things to do” relating to all of this, some things we can do together, some things I have to do myself. We’re going to walk through the yard and make a video for maintenance, weed control, and plant ID. The garden and yard is my thing. Cooking also! Modifying recipes for 1 or two people, instead of the 5 or 6 I’m used to. More after we get home!