Scan Results

I've had a mildly nerve-racking time since my last scan found, what I would call, significant progression from my ribs on the left and into my chest wall.  I think 5 cm is pretty significant, considering my early tumors were measured in mm.  That is why I haven't updated for a while, just too much, too tender and scary!

Since I last wrote we had family pictures taken (because I have hair, but I'm never sure when/if that will change!).  I was kind of bummed because I wanted to get "outside" pictures, but the weather that day was not going to cooperate.  We ultimately decided to go for inside at the state capitol.  I can't wait to see the pictures!  

We had a great Christmas, pretty low key and relaxed.  We don't ever go too crazy at Christmas but the kids were happy with our day.  Kids helped me make dinner (honey baked ham, au gratin potatoes, and rotkohl (red cabbage side dish).  I've never made rotkohl before, but the recipe I found turned out awesome!  I'd say very close to what I was used to in Germany.  I'll definitely make it again and again.

I've been dreading this week because I had all my scans yesterday, saw Dr. Buys today and have chemo on Friday.  I've wished and hoped and prayed that Kadcyla has made a difference, especially in my chest wall!  Yesterday, after drinking the radioactive "berry smoothie" for the CT, my body reacted in a way it never has before (GI distress came on way earlier, before I even finished all the tests and left the hospital). When you walk in cancer shoes, you never know what to expect.  So when the unexpected happens, you have to roll with it.

My scan reports came late last night, so I had already read through everything before I saw Dr. Buys.  My initial reaction was "mixed", some good news, some bad.  Here's the summary.

• the abdomen/pelvis CT scan showed no evidence of anything changing
• the bone scan showed progression farther down my femur on the left side
• the chest CT showed "interval resolution of the anterior chest wall mass, increased sclerosis of the left fourth rib, a few small pulmonary nodules" 

Resolution, meaning that 5 cm bad boy can't be seen on CT anymore, with only 4 Kadcyla treatments! Let me clarify: just because they can't see it on CT doesn't mean there's no cancer there ... they just can't see it, so is much smaller.  I asked Dr. Buys if some chemo is works better in soft tissue than in bone - because why would the chest wall mass shrink so much but the cancer spread farther down my femur?  We're stumped, but that's the best case scenario.  They can radiate my hip/femur while not affecting surrounding structures. Radiating my chest could bring unpleasant complications to other organs in the area.  

I came away feeling more optimistic than I have been in months, even though it wasn't a perfect score.  Sometimes I still can't fathom where I am, with a terminal disease that could turn on a dime at any moment.  Except for the week after chemo, I feel pretty normal (though always fatigued) and can accomplish things, and no one in public would look at me and think I was sick.  That's the irony, right?  How could I have a disease that will kill me sooner than later, when I look totally healthy to people who don't know me?  

So, in the meantime, I try to make the most of my time.  I'm chipping away at the legacy projects I want to complete for my family.  I feel re-energized after going to see "Journal for Jordan" with Mat.  It's a true story about a military dad, his girlfriend and their son.  The girlfriend gave him a journal before he was deployed so he could write down wisdom for their son while he was gone, which he did.  And then the Dad died from a roadside bomb.  They sent the journal home with his other things - what a treasure for that boy who knew more about his Dad than many people do.  I would never have thought at this point in my life that I needed to do a very similar thing, but here I am ... doing it.

I just have to share a picture of this.  This is my Moms house in 
Kaysville.  She sold it in 2016.  It's a small, brick bungalow built in the 50's,
in a neighborhood surrounded by other small houses built in the 50's.
This is what the contractor / architect came up with? 
Unbelievable!!!

Transitions

I woke up today feeling BLAH.  I stayed in bed until after 11:00, not sleeping, just thinking and not dealing with my dogs.  They are pretty good about just laying on my bed until I get up.  We go to the dog park first thing, almost everyday.  That's what they expected to happen today.  I had some errands to run today, so I gave them each a dog bone treat and left.

My cousin, Carly, died a couple days ago.  I got a phone call from her sister Stephanie last week, she told me Carly was down to days, maybe a week, so I expected it.  I sent Carly a text, knowing it may be too late for her to see it.  I told her I love her and I hoped she was feeling peaceful.  Then I said, "I'll see you on the other side!"

As crappy as cancer is, isn't it great to have the reassurance that we will see our loved ones on the other side?  I really believe their spirits are here, around us every day, closer than we can imagine, helping us navigate the hard things in our lives.  Carly's life was so hard, especially after her cancer diagnosis.  I'm grateful she reached out to me in the beginning, so we could talk and share support all through our metastatic journeys.  She would often ask me how I was, when I told her my updates from scans or whatever, she would express how worried she was about me, and that she would keep praying for me.  I would think to myself, "Oh, Carly! Your cancer is way worse than mine!  I'm praying for you!"  I hope I made a difference in her life, like she did mine.

My last errand today was Costco.  I pulled into the parking lot, found a row where two cars were leaving at the same time.  I flagged the driver going the other way to go ahead, then pulled into my spot.  Not surprising to me, it was one of my great friends in that car, the Mom of one of Maddie's best friends from elementary school.  It wasn't surprising to me because that was exactly what I needed today!  And Heavenly Father knew it, and He orchestrated our days so we would show up at Costco at the exact same time, and park next to each other - at the exact same time.  We sat down and talked for an hour over greasy pizza and soda.  My soul was lifted and I found some peace.

But that isn't all, because Heavenly Father knows!  I went home and got the dogs so they could run around and burn some energy at the park.  I saw a lady there named Sherry who I've seen before, we've talked and shared stories. We talked for a good amount of time.  I didn't tell her about Carly, but our conversation seemed to be focused on the spiritual side of this journey, for me and her son.  Her son has a very serious health condition, and at 27 is facing applying for long term disability, like I did. But at his age, he doesn't want to stop working!  He doesn't want to be on disability! She shared some stories with me that tie in beautifully to my thoughts about spirits surrounding us here, helping us through the hard times.

It is sometimes hard for me to accept the will of God for me.  I don't want to leave my family behind, I don't want to miss important milestones, I don't want to leave Mat to "fend for himself".  I always imagined us in our 70's and 80's, walking around the block together - leaning on each other for support. 

I knew after my diagnosis 4 years ago that it wasn't my place to try to "fix it".  When people would approach me with miracle diets, enemas, supplements, detox programs, oils, potions, mindset ("just laugh a lot!" or "only have positive, uplifting thoughts!"), etc. I knew the right thing to do was conventional treatment.  I believe I'm alive today because I trusted my doctors and have done what they recommended. They are patient with me. "Kim, do you think if maple syrup and baking soda (or a vegan diet, or smoking pot, or juicing vegetables, or a certain supplement, or liver cleanses ...) were a cure for cancer, Huntsman researchers would already know that?" 

 I've always known that my life path is right where it needed to be, and it wasn't up to me to try to cure myself.  If God wants me cured right now, he would take it all away.  But He hasn't, because for reasons I have yet to understand, He sent me down this path because I have things to learn, my family has things to learn.  In the meantime, I prepare for the inevitable, and do my best to inspire and serve and love those around me.

I have chemo on Friday and will be kind of out of it for 2 or 3 days.  I've found I need to sleep a lot after this particular treatment, and Mat is so great about just letting me recover.  He just takes over to make sure chores get done, and projects get done. He's the best husband anyone could ask for, I love him a lot! 😘

View from the mountains above Bountiful, the
Great Salt Lake pretty near disappeared this year!

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!

God Knew!

I have a friend named Becky.  Actually I have more than one friend named Becky!  But the Becky I'm so grateful for today was also a novice breast cancer patient when I was diagnosed in 2010ish.  We both happened to join a support group for young survivors, and we both happened to show up at a support group dinner at Sizzler early on.  I saw her walking into the restaurant with a head smooth as a baby's bottom - mine was the same at the time.  We both wore baseball caps.  We connected that day with a connection that can't be broken.  When she told me her story, it sounded way scarier than mine.  She had two little boys-and a husband-who still needed their mama.  We've been friends ever since that day. 

You all know temples have been closed for a long time.  Weeks ago, my friend Teri and I made appointments for todays session at 2:00. I've been sick with worry about my progression, but today I had the thought, "I just need to talk to Becky" because her cancer had done what mine is doing now.  We walked in and got settled, I looked and realized that Becky was sitting on the row in front of us.  I was astonished, without words!  I shed a few tears realizing the miracle of it.  After the session, I found her and we threw arms around each other.  She said, "Of course you're here!" and I said "Of course you're here!"

God knew months ago that I needed to be in that session at 2:00 today.  God knew that by the time we attended that session, I would know about my progression and need specific things and people to help me through today.  God knows what's been happening and has been orchestrating blessings and tender mercies all along!

Becky told me the story about how she ended up in the session at 2:00.  She wasn't supposed to be in that session. She was there with her RS doing sealings.  But one thing led to another, and she was sitting on the front row in the 2:00 session with me. I'm so grateful for a loving Heavenly Father who is so aware of this imperfect, stubborn woman (me), and loves me enough to help me anyway.

I really hate how my stuff affects everyone else in my family, but especially McKinley.  For a long time, she has wanted to be good at "something".  She didn't get the music training our other kids did.  I know.  Hard to believe that WE have a kid that doesn't read music!  She wasn't ever interested in learning piano.  Her interests are soccer and volleyball.  Mat has hit the ball with her some.  We enrolled her in volleyball classes that North Salt Lake Rec did this summer. This week is Volleyball Camp at South Davis JH. She was really looking forward to it, but after she (and 50 other girls, mostly 8th and 9th graders) got there, she got intimidated really quick.

She is our most "openly anxious" kid.  She's not afraid to dream big and have high expectations for herself, but sometimes the execution is a challenge.  We aren't even a week from the worst scans of my life, and she's trying to compete with girls that are half again as tall as she is.  She's very discouraged tonight because she wanted to do well, she wanted to make her Dad proud because he's been helping her with hits and serves.  Tonight (one day later) she decided she's going to try out anyway, knowing that it will give her good experience and that she has two more years after this, to keep trying and practicing.

Game Plan

Last night I pulled up my chart online to see what my last scan results were, because I didn't feel alarmed by them 3 months ago! Sure enough, there's really nothing remarkable about those scans. My worry this weekend has been, then, how can so much change in just 3 months?!

I sent a note to my oncologist last night saying as politely as possible that I MUST talk to her today about my scan results. Her game plan is first, a biopsy, second, radiation, and third, changing the chemo. So now I wait for the biopsy to be scheduled.

I've been really grateful to have so much time on Herceptin. It's not a new drug, but it's a powerhouse for those with Her2 positive breast cancer. My 4 year anniversary of diagnosis is just a month away, and I've been basically doing the same treatment since then. I've dreaded the time when Herceptin stopped working, because now it will be more like I'm a lab rat than anything. A constant cycle of switching drugs to see what works, balancing new and old side effects, etc. etc. Sorry folks, but this is where decline starts gradually. Could be 5 more years, but this chemo stuff takes a toll. I've seen it in so many of my friends. It just means we travel more and play harder (hahaha). I can't play hard now but I can watch! I'll keep you posted on developments!

Hope, Alaska - I could get used to this view everyday!

Damn Cancer

It's taken me a long time to get this update posted.  I've been in a funk for a while, just feeling discontented and confused about the meaning of my cancer journey.  One of the hard things about what I have to deal with is knowing that my time is short, relative to most other people.  People ask me all the time how I am.  Generally just say "I'm good ...?" That probably frustrates those who ask because I'm answering from a "physically" standpoint.  Physically, I have cancer in my ribs on both sides, and in my left hip and femur.  Emotionally?  I'm a mess.  I feel frantic about making sure my kids are in a good spot before I go.  I'm a bit of a control freak and want to make sure my kids lives are in order, meaning MY interpretation of how their lives should look. I don't know why, I've never been able to control how their lives look!  I told one of my children recently that I tend to "preach" because I feel compelled to try to cram 30 years of advice into a short period of time.  It is so hard to contemplate what is coming.

I had my scans yesterday and was surprised to get 2 of 3 results back last night.  After reading those, I was pretty confident that I'm still in a good place.  But the third one came today.  It was the chest CT scan, and this is what it says:

Unchanged 1 cm left axillary lymph node (series 2 image 23). An additional left axillary lymph node appears increased from prior, now measuring 9 mm, previously 3 mm (series 2 image 26).

 

There is a new left anterior chest wall mass between the third and fourth anterior ribs, associated with infiltrative sclerotic lesion of the left fourth rib. This mass measures approximately 5.1 x 3.1 cm (series 2 image 58) and appears to contact the underlying pleural surface. There is increased size of underlying pleural nodule measuring 4 mm, previously 2 mm (series 2 image 71).

 

There is a new nondisplaced fracture of the left sixth posterior rib (series 2 image 59), corresponding to uptake on nuclear medicine bone scan. Unchanged fractures of the left posterior fifth rib and right posterior eighth rib. Unchanged healing fracture of the right posterior eighth rib associated with sclerotic lesion.

What does that mean?  One lymph node has tripled in size.  There is a "mass" growing between the 3rd and 4th ribs, growing into the 4th rib and extending to the chest wall, and several fractured ribs.  The CT scan picks up fast growing cells, fractures and metastasis look very similar on the scans. Often they can see a problem, but can't pinpoint which it is.  If it gets bigger scan to scan, it's cancer.  If it is stable over time, it's a fracture (fractures make the bones more vulnerable to cancer infiltration - neither scenario is great).  SO, THAT'S SUPER CRAPPY!!!  I haven't talked to my oncologist yet, hopefully Monday.  My best guess is that chemo treatments will change to try to attack it from another angle.  With that comes a whole new set of side effects and concerns.

I haven't had significant progression since I started this adventure almost 4 years ago.  So these scan results feel like a gut punch.  I knew it would happen eventually, it does for everyone.  The great thing is I have many friends who have walked this path before. I get a great deal of support from them, but also from friends who have never experienced cancer before, but have gone through other very hard trials.  Everyone has them ... this just happens to be mine.  One HUGE blessing is that in all these years since I started cancer (end of November 2009, kids were 12, 9, 5, and 5 months), I had very little consistent cancer pain (only my hip in 2020) ... and I don't have pain now.  It's crazy to know that those cells are growing uncontrolled inside me. My scans just 3 months ago didn't show any of this.

We've had a very busy summer.  There's never enough time to accomplish all the projects that need to be done.  We're getting our basement ready to rent.  We have a short term renter moving in while she's looking for her next house, even though the basement is far from finished!  We still have a mess in the hallway, living room and kitchen.  Two bedrooms and the bathroom/laundry are done.  I guess that's something!  

I'm going to post some pictures from all of our trips this summer. Scroll through if you want to!  We've seen a lot of beautiful things!

This is fireweed, it's all over the parts of Alaska we
visited.  I asked Annette why they don't sell it in
nurseries there.  She said "It's a weed!"  It may be
a weed but I'd plant it everywhere!

Our first night in SoCal.  We missed the only amazing
sunset we'd see that week because I couldn't find
parking in Laguna Beach!  Every other night
was foggy.  This trip was just me and Brooklyn 
and totally worth it! 

We spent a few glorious days at my sister's amazing cabin 
in Huckleberry Bay, Priest Lake, northern Idaho.  It's about
as perfect as a house can get, lakeside, private beach, boat dock,
beautiful cabin surrounded by forest and huckleberries and wild
animals.  McK would gladly stay there forever if that was an option! 

I won't take credit for this photo, Mel took it.  
This is the view she and Pat put to bed every night.

This is Mel, my sister and Pat, her husband.  
We're so grateful for their hospitality!

We went on a mile hike up to these cedars. 
Worth. Every. Step.  Standing among those
trees, and in that forest, you feel really small
and so amazed at the beauty and peace all around you.

I love this picture too.  Again, Mel took it. They found
this eagle nest along the lakeshore and took a bunch of
pictures before those birds flew.  I love that Mom is a
little blurry in the background, but watching over her little
ones intently. You can bet if any danger came near,
she'd be there in a second with talons flared, ready to
defend her babes. Can we relate to that as Moms?  
I sure can.  I just want my little fledglings to be safe and
happy as they leave they nest, and be safe and happy
as they grow into adults.  But momma eagles, like human
mommas have to let those babies go and trust that they've
learned everything they need to know to survive in the world.  
For human mommas, sometimes it's hard to let them go.

I'm obsessed with huckleberries.  I was first introduced
last summer when I stopped by my cousin Ruths house
in Coeur d'Alene.  She made huckleberry lemonade
for us, which was so tasty! I found a guy from Canada
on Etsy this year and ordered 10 pounds from him.  
Huckleberries aren't cheap because they are so labor
intensive to harvest and process.  Every single berry
has to be hand picked.  It might have been my most
extravagant purchase this summer.  But compared to
buying 2 pounds from him, it was a great deal!!! 😂
I sure hope he really sends me my huckleberries!
  

Nothing like a little kayaking on the Little Spokane River
on a beautiful, sunny day!

Mat dropped me off in Spokane on the way home,
so I could spend a few days with Belinda, my twin
from another mother.  We are so much alike, and she
has red hair, and we've both had cancer, and our kids
are about the same age. We met at a breast cancer
retreat for families in Sedona, AZ a couple years ago.
We instantly clicked and I knew it would be a life long thing.

More from Alaska!

Knik River, this is run-off from the glacier we
visited.  I could get used to these views!

Up on Knik Glacier.  It was surprisingly cold - I guess
you can expect that standing near all that ice!  I have my
hood synched up because it was so windy and I was
NOT going to lose my hat!  The standing joke was how
many rocks would Mom get away with taking home?
Maddie said I had to limit it to 5, but I took home 8.
I knew whatever I took had to go in my carry on,
so that made it easier to limit myself.  

Maddie made me carry my rocks in the
hood of the coat so I would feel how
many I really wanted to take home!

This is just an average day in Annettes 
backyard.  The moose wander through all
the time, day and night!  Kind of a novelty
for us city slickers, but still a big deal for
Annette!  She loves the visitors she gets
in her yard.

My amazing daughter, Maddie.  She got to come with
me on this trip because we were supposed to go on a
cruise last year.  When that got canceled, we had
non-transferable flight credit on Delta. So, it had to
be the two of us that used those credits.  I think we did
pretty good switching from the Caribbean to Alaska! 

The remnants of Indepence Mine, an old, early 1900's
gold mine up Hatcher Pass.  Annette's daughter Matea,
Brad and Oliver were with us for a few days too.

Anchorage temple is stage 3, so we got to do a session
together.  This was my first time back to the temple since
before the pandemic.  It's always a sweet experience
to be at the temple.

No trip is complete without a botanical
garden.  😉   I'd never post every picture
I took of flowers and plants, but one I have
to share because it is so beautiful.

The summers are too hot in Utah for this beauty,
I'm sure.  But isn't she GORGEOUS?!?

I'm super grateful we got out this summer and made some memories.  Poor Mat only "got to" come on the trip to the cabin.  He's back at school now.  I always know that by August 1st, he's done for the summer and scrambling to get ready for the school year again.  That's why we crammed so much in, I'm so grateful we did!

p.s. I don't know why there are formatting problems in the middle. It just is!

Another one on the road!

It happened!

I always look forward to my support group that is every other Wednesday, this week was another great chat with my friends!  I mentioned in our conversation how frustrated I was with my hair and that I wanted to just shave it off again.  It seems it has stopped growing and is making me crazy!  Dr. Buys piped in and said, "I could help you with that, Kim!" - meaning she could change my chemo to a drug that causes hair loss.  Chemical induced hair loss is NOT what I had in mind!  There is talk that we'll be able to go back to Huntsman for group.  That will be awesome!

When I think about it, my hair not growing makes perfect sense.  I have NO appetite, I usually just eat once a day because I don't feel hungry.  I drink water constantly (it seems) but I can't seem to drink enough to keep myself hydrated. That's all thanks to almost 4 years of cancer treatments.  I take supplements when I remember, but that can be sketchy too.  My body needs nourishment it's not getting.  I grew spinach this spring and have made a green smoothie or two.  

People ask me all the time how I am.  I wish I had a definitive answer for that!  What you see on the facade is not what is going on inside me.  I feel good about accomplishing one thing a day + dinner.  If I can do that, it's a good day.  Some days all I can do is flip through channels and nap.  Sometimes people assume I must be in remission because I have hair.  Remission doesn't exist for any stage 4 cancer patient.  Even if things look good (aka "stable") at this moment, it won't last and we never know when it will change.  When scans roll around every three months, there is a lot of internal worry and stress - "my quarterly panic attack".  You never know when progression will happen.  I worry a lot about my family, especially the littlest who has so much anxiety all the time worrying about losing me.  I worry about Mat who seems to be thinking through what all of this will mean.  I heard him say he'll retire from teaching at 30 years (2024?  2025?) and then take a year off before returning to teaching in another capacity.  I mourn the things I will miss in my family's lives.  Some days I feel melancholy and can't really put my finger on why.

I don't usually have much on my schedule and try to get out with friends when I can.  Last week on Monday I went to dinner with my life long friend, Diana. We went to Olive Garden and then sat in my car and laughed about stuff for the next two hours. 😂  I had to retell the story about when I drove off with the gas pump at Costco, still running and attached to my car, how I saw the hose in my rear view mirror bounce back like a giant rubber band, and how I wondered what in the heck the guy in the car behind me was thinking!  That was the week I was diagnosed stage 4.  This week I had lunch with Sharla.  We went to a new place she found in Syracuse that has South American food, pupusas specifically. So good!  She's one of my gardening buddies, we love talking plants!

Mat's final concert was Wednesday night.  It was SO GREAT!  It was the first concert that felt "normal" after more than a year of crazy.  He's done a great job adjusting his Choir program to conform to covid mandates and managed to hang onto and recruit students for the program.  He's a dang rock star!

McKinley had a complete meltdown last night.  She was upset about her braces, she was upset about her volleyball playing, she was upset about school.  She is terrified about going to the dentist and orthodontist. She has an appointment at the Ortho tomorrow, that probably has a lot to do with her emotions this weekend.  When she was little, I would have to sit her on my lap so the dentist could count her teeth.  She would clamp her jaw shut and not let him in.  After a couple years of that, she would sit in the chair by herself, but still wouldn't open her mouth much and pushes dental instruments out with her tongue.  Imagine what it's like to take her for Ortho appointments!

Last night we went on a walk so she could calm down.  We walked around the block and stopped to sit on our neighbors retaining wall in the shade.  I've learned that I just need to ask a lot of questions and then listen.  She's a very black and white thinker, everything is either perfect or a catastrophe.  After a few minutes of talking things through, Kelly came around the corner - it's her wall!  She could see that McK was struggling and came and gave her a long hug.  She invited us to go sit on her patio and brought out Creamies and bundt cake for us.  She seriously made my day.  Kelly knows what's going on here, her family is very helpful and inclusive of our girls.

Life feels a little hard right now, please keep us in your prayers!

Scans, Ambien, Michelle

I got the results of my bone and CT scan.  Things look good!  There are always little changes that they'll watch on future scans, but overall Dr. Buys is happy with the relative stability I've had on Herceptin.  When I hear about side effects of some of the drugs my friends in group move to, I'm grateful for Herceptin too!

... peacefully sleeping right where my feet go ...

I've had in my head that I wanted to rearrange our bedroom.  I'm not going to lie, it's because I have too many houseplants and I don't know where to put them all!  I'll move the dresser back under our big window for my medium light plants. 

The other night, I was in a bit of a panic because I had picked up two prescriptions from Smiths, and I was sure one of them was Ambien.  I've been taking Ambien for so long that it would take weeks or months for my brain to wean off of it.  The panic set in when I couldn't find the refill.  I literally tore our room apart in the wee hours of the morning.  I went through every drawer in places that made no sense.  I moved furniture around so I could see under and through everything.  I was gearing up for seeing Dr. Buys the next day, trying to figure out the great story I would tell her about why I needed a refill for the drug she just refilled.  Thankfully, I got a text from the pharmacy that morning before I saw her, telling me I had something ready to pick up.  So before I made a complete fool of myself, I called the pharmacy to see what the refill was.  You guessed it.  It was my Ambien.  Our bedroom is still torn up - maybe tomorrow, with Mat home, we'll get it put back together again.  😂

In other news, I got a call on Sunday from my friend Michelle.  We talked for a long time about what's going on with her health, where she lives now, etc.  We had a "falling out" a couple of years ago.  With everything that was going on with me, it was easy to walk away and wash my hands of it.  I just didn't have any more emotional strength to continue trying to help her.  I'm feeling the same now, stretched a little thin with my cancer and the worry that comes with it.  She desperately wants me back, but she's vulnerable and sick.  It's not going to get better from here, for either one of us.  So I'm contemplating what to do, how to handle that.

I wanted to say one more thing about the retreat we went on three weeks ago.  After 3 glorious days of classes and workshops, they always do a talent show on Friday night.  There were 4 of us that agreed we'd sing something together, and when going through the music they have in the lodge, we came across the piano book for "Wicked".  I mentioned how much I LOVE the song, "For Good".  I haven't listened to it for a long time, but that's what we decided to do.  As we're practicing with Mat at the piano, and we're belting out our very best Kristin and Idina, the words got to me because they have a totally different meaning to me now.  I choked up and said I didn't know if I could get through it!  But we went ahead.

The lyrics to this dang song I love, that brought more weeping than singing:

I've heard it said
That people come into our lives
For a reason
Bringing something we must learn
And we are led to those
Who help us most to grow if we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes the sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So, let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have rewritten mine
By being my friend

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a sky bird
In a distant wood
Who can say if I've been changed for the better
But because I knew you

Because I knew you

I have been changed for good

And just to clear the air
I ask forgiveness
For the things I've done, you blame me for

But then I guess
We know there's blame to share

And none of it seems to matter anymore
Like a comet pulled from orbit (like a ship blown from its mooring)
As it passes the sun (by a wind off the sea)
Like a stream that meets a boulder (like a seed dropped by a bird)
Halfway through the wood (in the wood)
Who can say if I've been changed for the better
I do believe I have been changed for the better

And because I knew you

Because I knew you

Because I knew you ... I have been changed ... For good

Again, I love the sentiment of this song, especially now with my damn body fighting against itself.  SO MANY PEOPLE have changed me for the better.  That is something I'm eternally grateful for.  We get through our trials with the help of those around us. We are Christs hands on earth, doing His work.  What a journey I'm on, a confusing, maddening, blessed, depressing, exhausting journey.  I'm grateful for Every. Single. Day!