Thursday, December 28, 2023

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

Tuesday, December 26, 2023

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

Thursday, December 7, 2023

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!





Saturday, November 25, 2023

 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!



Saturday, November 11, 2023

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. ๐Ÿฅง ❤️๐Ÿ˜‚

Friday, October 20, 2023

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! ๐Ÿ™‚
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!

Friday, October 13, 2023

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. ๐Ÿ˜‚
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 ๐Ÿคจ๐Ÿคช) 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.



Monday, October 9, 2023

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!"

Saturday, September 30, 2023

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.



Monday, September 25, 2023

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!





Sunday, September 10, 2023

Good God!

Just a quick update: it's been a low key week, not many side effects to worry about, but we've had some fun visitors. Really, if anyone wants to come by, please feel free! The length of the stay may vary based on how I'm doing at any given time, but I love to have people come and shower us with love!
We're keeping it all pretty low key, trip to cali beaches in about 1 ½ weeks, a handful of christmas concerts, and whatever else we can find in the not too distant future. Maddies wedding the end of October, we also hit everyones birthdays before the end of the year (except me and McK who have summer birthdays). My goal is to keep as much as we can do to keep the "future" calendar full.

We went to the storytelling festival at Thanksgiving Point this weekend and had a blast! Even McKinley's head popped up off the wet grass and I heard her start to giggle about halfway through the night (be more open to being with us). By the last story, we were in stitches! I love the time I get with family when it's not too complicated to get us all together. I need to get Maddies wedding info on here soon. I will!

 Last night as we drove to the Festival in Lehi on i-15 through Salt Lake, we drove through an absolute downpour with slow traffic, wipers working triple time, and we wondered how they would manage an outdoor event with several hundreds or thousands of spectators . The equipment would have to be dismantled and protected from the rain. We were coming down the hill into the waterfall amphitheater when we heard over the loud speakers, a message from a lady that works full time for the festival. She said that every possible news network, weather app and station was consulted, and there would be a deluge of rain right over the amphitheater between 6:00 and 7:00. Then she said in the most diplomatic and professional way, something like, "There are a lot of people here tonight, from every imaginable religion. I'm going to ask for one minute of silence, and ask you to pray to your God and ask him to hold this storm off until ... the show is over ..." In a show of solidarity, a silence came over those hundreds or thousands who began to pray silently. After that, I felt one raindrop. I kept my eyes on the sky and watched those rain clouds slowly move northeast over the next hour, around our location. God, in every religion, is a good, loving God!

Wednesday, August 30, 2023

Quick Update

 Just a quick update. I think I told y'all about picking out our rock at the headstone place. Today we dropped off the art work? I don't know if that's the right word. So, I'll include the pictures here! Keep in mind these are our best effort to lay out what we want. The guy there will do up an initial, almost final, rendition for us to approve. Then they'll get started! I'm not sure that CS Lewis quote is the one I told Mat to use?

I've figured out in the last week that Ritalin was making me crazy anxious. The NP last week recommended I cut those pills in half. I cut them out completely and feel fantastic! They made me feel anxious and unsettled, like when I had the cardiac arrest last year and my racing heart. Oh, if I had known this months ago!!! I can't believe how different I feel today, I took them out of my regimen 4 days ago. Feeling "Great" at the moment!

Here’s our rough draft and stone. It’s GORGEOUS!!!

Saturday, August 26, 2023

Radio Silence or Crying

OK, I haven't updated in a while. It's easier to say nothing than to start crying.
I'll try to remember some highlights. On a good day last week, Mat and I stopped at Bountiful Monument to pick out a rock. I tend to lean towards the greens, found a beautiful specimen in the color Emerald Green. I've been looking for ideas online for the head stone design, and found one I really like except the cost for the rock and someone else's copyrighted design was 20 grand. So we'll still get a very expensive, beautiful rock from India (or somewhere). I asked my uber-talented, artistic sister, to design it. I asked for "similar" but not too similar. All of this has me wondering if I should just go find a nice rock in the desert somewhere (but emerald green!).
We did indeed get a visit from Elder Gong, which Brooklyn wrapped up nicely. I will just add a few thoughts. Kind, generous, charitable men don't come around everyday - nor would I want that because I married one! But Elder Gong epitomized everything he talked about in his conference talk on Ministering. I think in general he's pretty soft spoken, but he was very clear when he told our girls right off the bat that "this is NOT your fault!, then got eye contact with the other daughter and repeated it. He wanted to make very clear that they didn't do anything wrong to bring this on, and neither did Mom or Dad.
He said a loving Heavenly Father would never give HIS child some hard thing as a punishment for choices or mistakes made on earth. He talked about the bigger picture, how everyone will struggle with trials that seem too big to bear, but that's how we learn to rely on Heavenly Father and Jesus Christ to get us through the hard stuff. That's the Atonement. Christ was sent to carry our burdens and lighten our loads and atone for our sins. THAT's what it's all about. (Mosiah 24:14-16 - insert your name in there as you read it - pretty powerful when you personalize it to you and your life). My other favorite is Alma 7:11-13. The purpose of Christs life, to take away infirmities, temptations etc. so as to fulfill the purpose of the atonement ... at the end of verse 13 is where it talks of blotting out the sins of the people. It's all great stuff that bring peace of mind and clarity when your brains work like that.
I'm stuck in the vicious cycle where mouth sores and taste distortion make it hard to eat and drink. When I can't eat or drink, I can't make enough poop to push it through, it backs up into my stomach making me really nauseous and then I vomit. Then the cycle starts again tomorrow. I know it sounds like something you would all love to try, a real cake walk, let me tell you!
More to come soon.

Tonight we hosted our neighborhood Snack-n-Stroll. Fun, but people don't know how to talk to me and I don't want to be a bummer. This week I'm meeting with the SOS team (Supportive Oncology and Survivorship). Someone is coming tomorrow to help me in the backyard that has been completely ignored this whole summer. I'm shaving my head again tomorrow. I can pull it out by the root and not feel anything but a little resistance. 






Monday, August 14, 2023

 A couple weeks ago, Pres. Farnes called to ask if he and Elder Gong could come on a short visit yesterday. He was here for the youth event yesterday and wanted to visit a few families before the event. (I’ll finish tomorrow!)

Brooklyns notes: Elder Gong
Be in the moment - we can only take it one day at a time
Bad things don’t happen because you did anything wrong or God is mad at you
We have light and love in our family
There is always hope — everything really will be ok in the end
We should sing together. Nothing has more power to unite than music
Don’t take everything so seriously, it’s ok to have fun
God loves us a lot
Family is very important
We have support
Said prayer and gave hugs



Saturday, August 5, 2023

Exit Plan

Why did I wait until 1 am to look at my tumor marker from today. Because I had a hunch it’s going the wrong direction. It’s a cussing sort of result, but I’m not going to do that tonight.
My marker went up over 400 points, from 355 to 765. In 5 weeks time, I’ve never heard of that happening to any one, that kind of a jump. I’m speechless. I mean I don’t even know how to respond. Except to bawl my eyes out and accept that I’ve known for a long time this was coming.
I had my first Taxol today, so technically I’m still riding the Doxil drug from a month ago, when the tumor marker was 355. I’m going to reach out to my doctor and see what other drug/s might be added to treat this like the emergency it feels like. I know she has seen the result by now, so hopefully her wheels are already turning.
Let me explain my exit. There won’t be a formal funeral. I’ll go on hospice sooner than I ever thought, and with best friends and a handful of family around, I’ll make my exit. In a matter of 2 hours, my body needs to be back to Huntsman for an autopsy, where the right people will be summoned to remove my cancer from wherever, then set it up so they can harvest samples. They’ll close me back up, mortuary will pick up and do the cremation. So, no viewing or formal service. I know already what people are thinking, Kim. “The funeral isn’t for you, Kim. It’s for the family’s closure.” They will get their closure during the dying process and before I’m taken away to Huntsman’s breast cancer labs brilliant researchers. If there’s a chance I could do something hard (donate my cancer so my girls have a better chance later), it’s worth every sacrifice and doing things differently that makes it all worth it!
What I’d like to say about a ceremony of life celebration. I have a great thing planned, but all depends on timing, how fast I go, etc. So there’s a flexibility there. Don’t know for sure when any of that will happen. The idea is that we would open our home for about a month, or two weeks before and invite basically everyone on the blog + a few others to come for a visit, so you can “see” me and not “view” me. I’d much rather be “seen” (even if I look awful) than “viewed!” What I would love is that everyone write a few words about funny times we’ve had, BE Specific. Let’s create a binder full of hilarious things that my family can enjoy later.
Then later there will be a graveside service arranged by Mat. That’s all I know about his part.

I’m really tired so I should go before I mix up too many more things. And I’ll brainstorm some more tomorrow? 

Thursday, August 3, 2023

Pac Man

 I convinced myself early on that if I had to go early, cancer was a good way to do it. I could plan and prepare, you know! Intentionally accomplish some things that were neglected. My world was turned upside down in January when everything turned upside down, chemo wasn't working, tumor markers kept rising. While I feel "yucky" most of the time, I've felt the worst I ever have emotionally. The battles that rage in my head everyday are unlike anything I've ever dealt with. Our neighbor across the street asked me if there was anything they could do. I said "nothing". What do I say? What do I need?! I guess I could say weeding or mowing my lawn. Mat really can't do everthing. Though he tries.

I start infusions of an old chemo friend on Friday. Taxol will be my friend 3 weeks on, one week off. This will be my third time on Taxol. I hope it's nice to me, I hope I can handle the side effects, I hope mouth sores aren't involved ... and I pray I can buy some time. Will you all visualize a Pac Man type scenario in your head and watch those tumors disappear. (Pac Man was the last video game I played -- I'm WAY behind the times. Love you all!
08/05/23
There is still a lot to accomplish before I go! I'm contacting my doctor today to see if she can raise the dose on the Taxol or add another drug to go with it. We're good for a while, I think. But if sure felt good to get all that out last night!

Saturday, July 22, 2023

Kids & Support

Someone asked to see just our kids Kesem photos) Thursday night after my CT results came in, I was trying to hold back tears because McKinley was with us. I finally looked and her and said "I'm most worried about you!" (because she's the youngest). She said, "Mom, you don't have to worry, because I have a support system. Brooklyn has a support system has a support system. We'll be OK". She was holding my hand as she said it. The tears were really coming then, and I looked at her and said "where did you come from?!"

(I'm grateful Isaac painted over the questionable tattoo on his arm, but I’m not sure why his text is looking back at me backwards)






 

Friday, July 21, 2023

Scan and Results

7/19/23
I'm finally getting a CT scan Friday after more than 6 months. I'm terrified at what might show up on scans. Please pray that I can calm down and be rational. It is what it is, right? No amount of worry is going to change the outcome. But I'm still FREAKING OUT!

7/21/23
Well, Dammit!
Liver: Since the prior examination, dramatic worsening of hepatic metastases are noted with many liver masses throughout the liver now seen. The previously identified mass in the left lobe measuring 4 7 cm now measures 9 cm. Many new lesions are noted. Portal veins remain patent.
I don't often curse on here, but todays post is cuss worthy!

I won't know anything else (what they'll do about it) until I talk to my doc. The only other thing is some significant sclerosis on my left shoulder. Keep praying please! 

Friday, July 14, 2023

Vulnerable empty nesters

 We’ve been empty nesters this week, with all 4 kids at Camp Kesem! Mat is kicking it on projects, our construction at home is finally done! We have a totally awesome new master bath, and a few other things our contractor did. We might have to sell a couple kids to pay the last invoice, though.

He’s helping me weed - I felt well enough to get on the ground to help him tonight! He has a list of things to do each day, he just scurries around getting stuff done. I love him for retiring from education so he ca be home with me. It’s been an adjustment figuring out what help I really need, and when I tell him to go away. He asked me, after driving by myself to my friends in Kaysville, “how was that? did you do OK?” Not only did I do that, but I brought 33 bags of compost home because they were on clearance! (I didn’t load them and we have yet to unload them.) I guess he needs to know because my body is falling apart.
I called Huntsmans research coordinator to get some details about how to donate my body for breast cancer research. They have to have my body within 2 hours of dying. They want to make sure the cancer tissue doesn’t die, which it will if it takes too long to harvest. See?! There is a cure for cancer! You just have to die first!
With no kids around, we went out to eat tonight. There’s a great Thai place where Sizzler used to be. Yum! I really like it, maybe even better than Thai In Town. That’s saying something! After we were seated, I said, “Mat, I don’t…. I immediately teared up, so I told him I would tell him later. I managed to pull myself together pretty quickly.
Tonight after prayers, he asked me what I was going to say. “I don’t want to die!” and the tears came with it. I don’t want to believe that this was supposed to happen. But it WAS supposed to happen. I’ll probably not understand it until I’m on the other side.
Poor Mat.

Saturday, July 8, 2023

Still Here

I’ve always known that cancer was/is hard on the kids. One of my very first worries was, “how in the hell are we supposed to talk to them about this.” I called my therapist and begged her to let us come in … on a Friday … after closing time. Her advice, "don't cry in front of your kids because they'll think there are new traumas to worry about." First diagnosis they were 6 months, 5 y.o., 9 y.o., and 12 years old. The parents we always wanted to be was taken away from us by cancer. A parent having cancer adds a level of guilt, stress, and overwhelm you can’t understand unless you ARE a parent with a terminal illness. It’s an impossibility to keep doing rock star Mom, when the nursery rhyme Mom can’t get out of bed, feels nauseous, can’t eat food, poop or feel her hands and feet. The second diagnosis was a gut punch. The miracle in all of this is I’m still here. My diagnosis date is September 11, 2017. almost Six years!
A good friend of mine would come when I needed her, let me cry and vent over and over again until I could go a few days without losing it. She still reminds me that on the specific day God wants me home, I’ll go home. Not one day sooner. Not one day later.
I know this isn’t my fault. I didn’t commit some grievous sin to bring this all on. I do know that every single one of us will deal with earthly trials at the same magnitude as mine, no one is immune. (honestly, I wouldn’t trade trials with some I know) So keep your metaphorical seatbelts on, and be ready by building and rebuilding your relationship with HIM. Remember He is in charge. Depend on Him with your whole heart. Learn the lessons that come from hard things.
Last night we went to Bountiful City Park for their summer “concerts in the park”. Utah Voices performed a great patriotic program, and I was grateful to be there! In my college days, I sang in A Cappella choir at the U, (thanks to Mat who surely bribed the professor to let me in.) **Utah Voices director Kelly DeHaan sang in that choir with me, where I learned how freaking talented he is, and the nicest guy on the planet. He is also one of Mats choir colleagues in the Jordan School District Music Department. When he found out I was at the concert, they came marching toward me where I was and Kelly gave me a huge hug and said the nicest things to me. We are truly blessed with our connections to music in the community!

** Back in the day, there were two good-sized choirs at the university. One was A Capella led by Dr. Ed Thompson. The other was Concert Choir which I didn’t want because of who the professor was….not for me.




 

Tuesday, July 4, 2023

 Today felt so good (not physically) because my good friend Olivia came and went to dinner with me. She was my first introduction to Indian food, when our boys were tiny people. I remember once going to Royal India in Bountiful (my first introduction to the place). I ordered, probably something boring like Veggie Coconut Kurma. When she ordered her meal and they asked what spice level she wanted. She said, "I want it hot! Not white girl hot, I want it hot!" She's lived and traveled all over the world, so she qualified to make that distinction. She's done a lot of great things in her life, like being interviewed for PBS's American Experience, teaching at a Buddhist University - in Boulder, CO no less. Her family moved into our ward in Kaysville when I was 16, she was a lowly Beehive - I knew we couldn't be friends. I needed to grow up some and have two kids for me to realize how cool she was. I remember her distinctly saying to me one day when she was picking up her boy, "I think we should be friends!" I agreed. From there we would take turns trying new recipes and inviting each other to come try new concoctions. The rest is history! My only regret from today is no pictures! Livi, could you come to my house for 3 minutes before you go home so we can get a picture together?


She left a family party to come back so we could get our picture together! I told you she is remarkable!!