Moonstone Beach

I didn't realize it has been a whole month since my last post!  Life rolls on somewhat predictably.  Most days, I don't have anything on my schedule, so I try to get the dogs to the dog park and make dinner.  That's a decent day for me.  Mat's a super cool dude and doesn't expect me to accomplish everything on my list.  He knows I do as much as I can and he helps me with the heavy lifting when I need it.

With the new drug, I have infusion every three weeks.  After two infusions, I'm still working on figuring out how it affects me.  It seems like it makes me really tired for a few days, low energy, and brain fog.  Weeks two and three seem better and I can get more done.  I have chemo again on Friday.  I hope this new drug is making some sort of difference!  It seems like the lump in my chest is softer, but who knows!  My next scans should be in November, I'm praying for good news!

We got back from California on Saturday.  It was a great trip with McKinley, she really enjoyed the beach! The water was freezing, but when you're 12, the temperature doesn't seem to bother!  We spent most of our time on Moonstone Beach near Cambria.  They call it Moonstone because if you are a true rock hounder, you can find agates there.  I'll tell you I sorted through millions of rocks there, but never found an agate!  I did find and bring home a lot of rocks that were green, red, black, yellow and a few pink!  I love cool rocks, I don't know what I'll do with these rocks yet, but there will be something amazing ...

Elephant seal beach - coming back to the
beach for mating season

The price of gas in Cambria. YIKES!

These two pictures were taken within a
minute or two of each other.  Sun setting in
front of us, a full moon rising behind us. The
campground we stayed in was just across
the street from the beach. We were close enough
that we could hear the tide crashing in at night.

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!

The Game Plan

I got my covid booster today.  My arm is SO sore, my head is pounding, fever up to 103.5, and sleeping 16 of the last 24 hours: not exactly what I expected.  But I'm so grateful that this vaccine is available to us and that it's effective and safe!  

I'm slow getting this update done.  I'm grateful for the game plan, but still feel a little sad about it all.  The tumor between my ribs and chest wall?  It's bigger than a golf ball, smaller than a tennis ball--and it seems to me it grew there pretty quickly!  Three months ago when I had scans, they couldn't see it.  

Back when I did this cancer stuff the first time, I did DIEP reconstruction, which basically means a fat transfer.  So all I have on either side is fat from my belly (left) and fat from my backside (right).  If I had known then about what I'm going through now, I would never have done reconstruction.  They could have just lopped them off and sewed it up.  I'm not sure I can reverse it now.  Cancer hospitals don't take surgery on a cancer patient lightly.

Dr. Buys is always very encouraging, telling me there are still a lot of options.  That's the blessing of being HER2 positive, more treatment options!  Mat took the day off to go with me, I was glad he was there.  We asked her all the questions and she showed us what comes next. There is a study drug available for what's going on with me right now.  I signed the papers to get enrolled in the study, there's only a 50% chance I'll get the drug.  If there is one thing you guys can do for me right now, it's PRAY WITH ME that I'll be on the randomized side for the drug!  We discussed the possibility of radiation in the future, it depends on how well the chemo does, if it will shrink the tumor enough to be able to blast it safely.

The new drug, Kadcyla, and the study start on Sept 17.  The side effects are very similar to what I'm experiencing now, so there shouldn't be any surprises.  I did ask - my hair won't fall out on these new drugs.  😁  There are tests/scans to be done in preparation for the study.  But I'll be most grateful in 3 weeks to get all of this started!  It's hard for me to think of anything else right now.  This news is the "gut punch" I knew would come, but I wasn't emotionally prepared for it.  

How I'm really doing ...

I had a friend send me a text tonight. She said I've done great keeping everyone updated on how I am physically, but she wanted to know how I am emotionally/mentally/spiritually.  I haven't brought it up because I've been at a loss for words, unsure about how to articulate it.  She helped me think about how to put it down in words.  Since my last scan results, I've just had vague thoughts running through my head. Thank you GT, for helping me get this out of my head!  This was my honest, imperfect, raw response (approximately ... I tweaked it a little).

It's a lot easier to be upbeat and positive about life in general when cancer only appears to be changing a little bit from scan to scan, when things seem relatively stable.  I can feel grateful and good about that!  But with this news, it's a lot harder.  I could see a physical change in my left breast weeks ago. Thats where the ribs with cancer are, and where it is growing into my chest wall. 

I've always said I want to at least see McKinley graduate (2027), I want to be around when Mat retires (2025? 2026?).  I want to make it to our 30 year anniversary (2024).  Will it happen?  I hope so, but I'm not in charge!  I see my friends dealing with so much, like brain radiation and pain pumps and possible colostomy bags. It's just really hard to think about what's possible. 

I'm not angry with God, but it's sure hard to accept His will for me right now. It's very hard to understand how this path is the "right" one for me and my family. I need to figure out how to be OK with this new reality. I think once I get going on the new treatment I'll feel a little better emotionally, just need to get on that path and see how it goes. 

I'm walking along a rocky path in the dark, about to step off the edge of a cliff.  That's where Heavenly Father catches me.  That's where faith comes in, knowing that HE has me cradled in His hands.  That's doing what must be done - trusting my doctors and care team. They are doing the very best they can for me.  That's being grateful for thousands of prayers from hundreds of people.  That's trying to be patient with myself and this diseased body of mine.  That's accepting life at a slower pace than I'm used to.

School starts tomorrow.  Brooklyn is ecstatic, McKinley is melting down.  Mat gave her a blessing tonight, something he's done for all the kids at the beginning of each school year.  Suddenly, she was in tears!  I had her come talk to me, after a few minutes we watched a couple "distraction" videos on youtube.  I rubbed Serenity oil on her back and hands, then turned on my sleep music and turned off the lights. I hope I can be a good support for her in the morning when she's getting ready and leaving for school!

She's having a really hard with all the "unknowns" right now.  Lockers?  Finding classes?  Walking group?  Mom has her own list of anxieties for her...  I went in and talked to her counselor at school and have sent emails to all her teachers, just to let them know what's going on at home.  I'm praying she will navigate the first few days of school and feel like a pro by the end of the week!

credit: Caitlin Connolly

2 updates

 I got some of the biopsy results today. My cancer has always been hormone driven, but it's not anymore. Estrogen and progesterine were negative. Waiting on one more result, the "HER2" protein. We need to know positive or negative on that one to come up with a treatment plan going forward. I'll keep you posted!

Just talked to Dr. Buys. Her2 was positive! The reason that's good is because it gives us more chemo options. I'll start Kadcyla next Friday, and radiation will most likely be in my near future. I told her I wanted my fake boobs removed too, so I may have a consult with a plastic surgeon as well.

Just talked to Dr. Buys. Her2 was positive! The reason that's good is because it gives us more chemo options. I'll start Kadcyla next Friday, and radiation will most likely be in my near future. I told her I wanted my fake boobs removed too, so I may have a consult with a plastic surgeon as well.All reactions

Volleyball Update

 I talked to McK yesterday about today's tryout, and she wanted to go do it - even knowing she probably wouldn't make it!  She didn't make it past the first round, but I was so proud of her for her determination to try anyway, and for her awesome attitude about continuing to practice and learn (and grow a few inches)! She knows she can try again and was totally content with the news about not coming for callbacks.  She's an amazing little person!