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!