Daughters

Forever an ABBA fan!

 

My middle daughter pointed out that it is (or was) National Daughters Day. I usually avoid stuff like this because it's a lot of pressure saying all the right things about my 3 daughters that I love dearly!  

Maddie is devoted, and patient, and passionate about the things / people she cares about. She taught her mother a few lessons in 2021, and I've definitely been changed "For Good" through our interactions and travels. She has a courageous spirit, loves to be outside, hiking, camping, adventuring. We love you dearly Motz!

Brooklyn is a remarkable person with a huge heart. She's getting ready to take the world by storm, focusing on nursing in HS, speaking her mind when it's important and valuing the voiceless even if she's in the minority. Tonight we went to Dear Evan Hansen together. On the way home I was trying to articulate a thought I had about the show, how it applied to us. The things we've been through this year have been hard, but "... you kids have taught your parents to be more open-minded, you made US better people." We're a bunch of cubes thinking we have to fit into a perfect circle, but that is simply not going to be. Our diversity makes us better. Love you Brooklyn!!!

... with her favorite Marley ...

Brooklyn with her
homecoming date.
I was unsure about
including him when
he doesn't know
he's on here!

If you could remember what McK was like the first three years of her life, you'd never believe she is the same kid! She wouldn't talk to anyone outside our little family. She would hide behind our legs, or bury her head in our laps, or close her eyes ... because if she couldn't see you, you couldn't see her! She was about 3 when the faucet was opened and she hasn't stopped talking since. She's my kid who has only known cancer. She get's a little anxious sometimes, but she's always willing to talk to me. I can ask her a dozen or more questions and just listen quietly for her answers. We can always get things worked out and back on track. She begged us for a long time for a dog. She would write "10 Reasons We Need a Dog" every so often so I wouldn't forget! Now I can't imagine "not" being dog people! I love you more, McK!

Four Years

September 11, 4 years ago I was sitting at the U clinic on Redwood drinking the radioactive smoothie for my first CT scan.  September 12th I got a call from Dr. Prystas, giving me the results of the CT scan.  There were tumors in my liver and lymph system, "too many to count," she said.  I took the news stoically, but as soon as I hung up I sobbed my heart out.  I pulled into a parking lot near At Home (the store) because that was the closest place I could go to stop the car and park for a few minutes.  

A few days later I pulled into that same parking lot after I drove off with Costcos gas pump still running and in my tank.  Just so you know, they have a work around for people like me.  I watched from my rear view mirror as the hose bungeed back to the pump!  I calmed down so I could drive, but cried my eyes out until I was about 3 blocks from home, then started laughing hysterically when I thought about what the guy behind me must have thought!  I laughed at myself anytime I thought of it or told the story to someone.  (I'll find the date I posted about that and list it here later.)

So much has happened since then.  I could write a book about how terminal illness changes your perspective, your focus, your conversations, your priorities.  I've had to adjust to a "new normal."  I've shed buckets of tears as I mourn the thought of missing the kids marriages, not meeting their spouses or our grandkids, I mourn missing graduations and other things that would be important to Mat and our kids--especially just not being here.  Who will fill in the void for them?  I mourn for Mat so much.  His tears are just under the surface.  He's not the guy that gets emotional very often, he's dealing with his own set of traumas.

For the majority of this journey so far, I didn't think much about actually dying.  I knew I would/will, but I didn't focus too much on it.  We started talking about "hard things" intermittently and have taken care of the cemetery plots and the mortuary stuff.  We've talked about life insurance money and funerals  (I'm not having one ...  more later!)

(It's Friday now) I was at Huntsman all day today.  I met with Dr. Buys who told me that Kadcyla can offer, on average, 9 months before there's more progression.  I think that was the most depressing thing I've ever heard.  She always assures me there are "lots" of options for my cancer. But I want a drug that will give me an average over 9 months!  My heart breaks for me and others in my same boat.  This is NOT a fun way to live.  My head slips into the depths with ease. I'm afraid keeping me alive will consume much more time and energy than I needed up to this point.  Don't take that the wrong way.  I'm SO GRATEFUL for Huntsman and the resources they have there for us. But it's exhausting, friends.  I've never done anything harder in my life than this.  I told Annie when I saw her last week that I love the people at Huntsman, but I hate that it's my home away from home.

I started Kadcyla today.  The first time you get it, they do the infusion slowly over 90 minutes.  When that's done, you have to stay there for 90 more minutes so they can make sure you don't have a reaction.  My next infusions will be 30 minutes with 30 minutes observation. The side effects are very similar to the Herceptin I've been doing, but need to watch out for peripheral neuropathy ...  and fatigue, nausea, liver problems, constipation, headache, low platelet count, bleeding, pain that involves bones and muscles and tendons, it all sounds like a party!  😜🥳

I listened to this book last week and LOVED IT!  While Edith Eger survived her imprisonment at Auschwitz, all through her life she was figuring out how to make a choice to live from day to day.  She became a psychiatrist and helped many people and families work through trauma and make the choice to thrive instead of just survive.  I want to remember her story when mine feels impossible.

Tender Mercies

The last few days have been filled with introspection, lots of questions and answers, and great amounts of  gratitude for my team at Huntsman.  Last night after I finished the blog post in the wee hours of the morning, I had an overwhelming feeling of peace and clarity.  I felt in that moment that the right thing to do is forget about the study and just start Kadcyla ASAP.  I had already scheduled an appointment with Annie (social worker) for today, so it was perfect as far as processing all my emotions.  I read a paragraph or two from yesterdays blog to her, because for me to try to regurgitate those thoughts and feelings are impossible.  

When I told her I had decided to drop the study, and recounted what happened last night, it was almost as if an invisible, silent lightening bolt came through the room.  We realized at the same time that the moment of clarity and help with my decision was my Mom-without a doubt.  

I'm almost at a loss for words-imagine it! Me! At a loss for words!  But that was an amazing experience that came, again perfectly orchestrated, because Heavenly Father knows what's going on with me, he knows what I need (already having had an appointment set with Annie) and will provide in the most perfect way.

Love you guys!  Thanks for sticking with me even when I'm cranky!  I feel a lot better today.  💙

*Beware* There's no carefully crafted sugar-coating here!

I've had some hard times in my life.  There have been times when I felt so down and overwhelmed that I could hardly function, couldn't get on the floor and play with kids, couldn't make a meal, couldn't get out of bed  ...  I've had WAY MORE great times in my life, when I felt like I could conquer anything, I felt strong enough to not let myself get pushed around, my business, my mission--new language and all.  I can't even fathom that now!  I think this cancer thing was approached with that same determination, NOT because I knew I would or could beat it, but because I know/knew my Savior will help me.  

The last 4 years have been an ugly spectrum of complete despair to complete distraction with some joy and perspective there too, as we've gone on trips, redone the yard and a lot of the house, etc. etc.  I'm not going to say that I've ever been positive and upbeat with what I'm going through now (oh yay! stage 4 cancer!), but I will say that there's something to be said about they way you allow your thoughts to run through your head.  Probably more than ever, at this moment, it's hard to control the way my thoughts run through my head.  Because I'm angry.  I'm angry at cancer, I'm angry at progression, I'm angry that cancer cells can mutate, I'm angry at how many people I know in my same boat, I'm angry that I have to worry about the futures of my kids and husband; I love Huntsman, but I hate that it's my home away from home, and that my life as I know it depends on what happens there.  I'm angry.  I'M ANGRY.

I got a call from the study coordinator tonight.  He said he got an echo scheduled for me on Friday, but can't get the CT scan or brain MRI until the last week of September.  I can't start chemo again until I get that done, because part of the study is to start the standard protocol (Kadcyla) and the study drug at the same time. So he's telling me that there will be a 2 month break (Aug. 2nd to first week in October) until I can start chemo again, ... because of these tests?!?  I DON'T THINK SO.  I already have a tennis ball in my chest wall?!  I DON'T THINK SO.  Let's try again friend.  He'll get a message from me tonight.  That way he can hit the ground tomorrow morning tweaking my plan a bit.  Poor Dr. Buys!  I love that woman, but I don't have the "just sit around and wait" gene.

I was in Lindon tonight, visiting my Arizona cousin with inflammatory breast cancer.  Her family is relocating to South Dakota this week and she got the week off and is spending it with her Mom (my Moms youngest sister).  First of all, seeing my aunt made me a little teary because she looks so much like my Mom.  I miss my Mom, the Mom before dementia. I just really need her strength right now. 

We talked for about 4 hours about our experiences.  They are remarkably similar as far as the side effects and the emotional state goes.  She gets a bigger "angry card" than me though, because she also has MS and epilepsy on top of stage 4 cancer.  It was so great to talk and vent with her because she keenly understands the cancer thing.  I don't fully understand what she deals with everyday, juggling all the drugs she takes to manage 3 diseases.

We kind of joked about getting tattoos and nose rings, because ... why not?!  A tattoo on my left back side that hasn't been sliced open might be fun, or maybe I could tattoo the right behind cheek with a zipper along the scar (from my reconstruction 10 years ago)!  I can think of a few friends who would do it with me.  I can also think of a few friends I couldn't bring with me because they would make me laugh the entire time.  Wouldn't be a successful tattoo.

One thing that I want to make clear is this:

• The conversations I have with cancer friends is different than conversations I have with "healthy" friends.  That is simply because life experiences teach us different things, take us down different roads.  But I wholeheartedly believe that if you really get down to the nitty gritty, our trials are more similar than they appear on the surface.  Loss, confusion, betrayal, fear, isolation, sadness, contempt, anger, disappointment, etc.  So lets talk to each other and support each other in all we experience, because we all need love and acceptance to thrive!
• I don't want anyone to ever feel "afraid" to ask me how I am.  Sometimes I sense that people are holding back, afraid it might bring up emotions in me or whatever.  I have those overwhelming emotions whether or not you ask me how I am, so don't hold back.  Don't be afraid!  I want/have a deep need to talk and connect on more than the surface.  Not going to lie, my life feels really crappy right now, but if you're willing, we could talk about it and then move on to another subject.

THANK YOU for sending your prayers and faith to heaven, to the only One who can truly "fix" this.  Thank you for supporting our family through occasional meals, kids "hang outs" at your house, hugs in the neighborhood and long talks until the mosquitos come out and long after the sun goes down.  WE LOVE YOU!!!

Facebook rant

 I am really on one tonight. I'm SO MAD at cancer, I'm so mad I had so much visible progression in three months, I'm so mad that I have so many friends that suffer the same emotional, physical and spiritual battles I do, Every. Single. Day. There will probably be a blog update in a few hours. I have some venting to do, it's going to be authentic and real and honest. Buckle your seatbelts! Come along if you want to!