Chemo Fatigue

My most recent chemo was last Friday.  I went by myself because Mat was back at school and I never got organized enough to ask someone to come with me.  Sometimes I like going by myself because they give me Benadryl through the IV to help with the reaction I have to Perjeta.  I get loopy and tired real fast!  I feel bad zonking out on whoever is with me!  Before my chemo three weeks ago, Dr. Prystas suggested we cut out the Perjeta but I hesitated because what we're doing is working!  Everything is stable!  I didn't feel comfortable cutting one out, despite the constant itching.

Late last night I sent her a message telling her I couldn't handle the itching anymore.  I'm going crazy!  I've always tried to look at the itching as "better" than chronic pain, so I just tried to suck it up.  But I'm telling you, I can't do it anymore.  I talked to her today, she said we can expect similar results cutting out Perjeta and staying on just Herceptin.  Here's to hoping that's true!

I kind of sighed on Friday when they escorted me to my recliner ... again.  It gets old, ya know?  Knowing that chemo will, literally, never end for me.  I'm approaching the one year anniversary of my stage 4 diagnosis and that's a little unnerving too.  There's so much emotion tied to that day.   Being thrust into the flurry of diagnostic tests, the biopsy, scans, and waiting endlessly for results and a game plan.   My life will never be like it was before.  Even though it's almost been a year, I find myself having to "deal" with that sometimes.

First Day of 4th grade!

Little bit of Vent

I feel like such a klutz lately.  I drop things, I feel light-headed and dizzy, I miss steps and fall.  Tonight it was down our front steps outside.  I was holding my phone because Brooklyn needed to go babysit, so I was tracking her down.  I fell into the rocks on one side, my phone shattered on the rocks on the other side.  Bad Apple in Bountiful was still open, so it's repaired now.  This not functioning well is really bothering me.

I just pulled up side effects for all the drugs (over the counter or otherwise) I take.  All but one has possible side effects of dizziness, light headedness, drowsiness, feeling tired, vision problems . . . .  It's no wonder I can't function.

I'm trying several drugs to alleviate the itching all over my body.  The itching is an allergic reaction to Perjeta, one of my infusion drugs.  I look like a crazed person when I'm scratching my skin constantly, and I think I need to take something to help it, but at what cost??  I think I'm going to evaluate carefully what I'm taking and cut back as much as possible.  Itchiness be damned.

New house, new beginning!

It's really late at night, and I should NOT be on the computer writing about this, but I just can't get over how all of this happened.

I've wanted to get back into a house for a while now, especially since being diagnosed again and my focus changed from "let's simplify" to "let's find a place where Mom can do her therapy!"  When we moved into our condo just over two years ago, our/my priorities were totally different.  But since I was diagnosed with stage 4 cancer, my priorities changed.  I've been a gardener and a landscaper for the last 15 years.  And I'm good!  I can create beauty with perennials and grasses, trees and shrubs like few others I know.  I work at J&J Nursery in Layton as well, and some days were just depressing because I saw all this great stuff come in that I couldn't try out.

Months ago, I started talking to Mat about getting into a house again.  He felt content just staying where we are and letting someone else mow the lawn.  I promised him that I wouldn't let him mow the lawn if we moved to a house!  I get to mow the lawn!

I've had this inner struggle about selling the house in this neighborhood that we loved so much.  I've felt guilt over lost equity (it's not just a little bit--I am not being a drama queen!)  I've felt guilt over moving to Riverton and taking the kids out of the schools and environments they knew.  I've felt guilt over moving back to Bountiful ... and taking the kids out of the schools and environment that they knew.  I've mourned over these things for so many years, since 2013 when it all began by selling the house we loved.

I've justified in my prayers why HF should allow us to find another house, so I can do my therapy outside.  I prayed that this house could be on "this" street because of everything we'd sacrificed in losing (er, I mean selling) the house we loved.  I told Him I felt I might live longer if I had a garden to do my therapy in.  I pictured the house, a rambler on an average sized lot right on the street I wanted to live on.

Well, God answers prayers in mysterious ways.  In His own time and in His own way.  When we were still on vacation, a house came on the market in our neighborhood.  An offer came in right away, but as luck would have it, they ended up canceling the contract.

It's a rambler but on a corner lot.  I don't want a corner lot!  There's no privacy in the yard! (True)  And it's not on the street I wanted to live on.  But since my rockstar friend Cari was the listing agent, I went to see it.  I wasn't super impressed because the house needs a lot of work and the kitchen is TINY.  So I brushed it off and decided to keep looking.

On my birthday (8th) we were sitting in Cheesecake Factory.  I texted Cari to see if the house was still available because Mat wanted to walk through it.  Thursday morning (the 9th) we walked through the house again.  We talked about what we did like about it, which is pretty much everything else besides the corner lot, the tiny kitchen and (me) not being on the right street.  We felt pressured to hurry up and make a decision because in this housing market, there's no time to think about things.  You gotta jump high and fast.  Cari told us to go home and pray about it, and call her back, preferably within the hour.  😊

So we did.  We felt good about going for it!  Then the work really began because Cari had to move heaven and earth to get this deal to go through; for our buyer, for us, and for her seller.  She had to write up contracts on three fronts, help coordinate funding for our buyer, stay in communication with our seller who is living out of cell phone range in Wyoming, etc. etc.  At 11:00 p.m. Thursday night, she called to tell me he had accepted our offer and wasn't interested in looking at other offers that trickled in after that.  He'd heard our story and just wanted to get it done.  I was speechless, stunned!  I couldn't believe what she was telling me!  I'm telling you, for us to be able to get a house that wasn't in a multiple offer situation, is a miracle in and of itself.  We can't compete with the little guys, let alone the big guys!



God heard and answered our prayers.  Thursday morning we're casual lookers, Thursday night our offer is signed, with a three week close no less!  We should have this wrapped up by the end of August.  Unbelievable!  When we have the faith to take the first step into the darkness, God comes and snatches you up and answers your prayers in ways you never thought imaginable.  I couldn't have come up with a better ending than this, but God who knows all things for our good, opened this opportunity up for us. And with the help of a determined, hard-working realtor, everything has fallen into place just as it needed to.  For that, I'm very grateful.

#cancersucks

I had grand plans for today.  I had so much I wanted to accomplish!  But the best made plans ...

I've known that my friend Bonnie was prepping to leave on their own grand adventure.  They sold their house and got rid of (in one way or another) just about everything they own.  They bought a motorhome and will travel the country for the foreseeable future, from Alaska to Alabama!  I'm jealous!

I thought they might be gone by now, but when I saw on FB they hadn't left yet, I jumped at my chance to go talk to her one more time!  I met Bonnie many years ago at Wasatch Peak, our kids charter school.  We've been friends for at least 10 years, she's a dear friend.  We sat on her brothers front porch and talked for a while.  During our conversation, I got a phone call from what I knew was a number from Huntsman.  It was my oncologist.

I don't often hear from my oncologist, I usually talk to her nurse about scan results or questions.  So when it was her, I kind of panicked!  The news was good though, everything is stable or a tiny bit smaller.  So, the combination of chemo we're doing right now is doing it's job!  The infusion, the study drug, the hormone shots - all worth it.

After I hung up, I had to take a minute to get back to breathing.  I realized I was having a little "panic attack like" episode from talking to Dr. Prystas.  I was going to say "this cancer thing doesn't seem to affect me too much" until I remembered the constant itching on my arms, back, and neck.  And the hives I get from touching my skin.  It affects me, I'll definitely be brainstorming that when I have my appointment with her tomorrow!  Because it's "nerve" itching, I can scratch and scratch, but I've found that only aggravates it.  That just irritates the nerves, so I have to try not to scratch it.  "Try" being the operative word there.

The only thing I've found that helps with the itching is Gabapentin, the side effects of which are dizziness and blurry vision.  I take two at night (so I sleep through that) one at breakfast, and one at a time later in the day if needed.  The maximum dose is 3600 mg a day, I only take about 1200.  I can't imagine how anyone can function taking that much!  I'm grateful I have options.

I found out late last night that another dear friend, Ginger, just had brain surgery to remove a large tumor that was growing there.  Breast cancer will grow, remarkably, almost anywhere.  She's overcome so much in her life, she's been a powerful example and light to thousands of people through her Soul Survivor Conference (I went last fall).  Her positivity and powerful spirit will get her through whatever comes of this.  I love her so much.

My Quarterly Panic Attack

I'm grateful I didn't have much time to think about this scan.  We were so distracted on the trip with fun stuff!  I had in the back of my head that I needed to check my schedule to see what was happening at Huntsman this week.  Monday I had chemo, my friend Geri came with me.  I don't know why an infusion that takes a total of 1 ½ hours takes 4.  We sit and wait and sit and wait some more.  For pharmacy, for the nurse to access the port, for pharmacy again, etc. etc.

Today I had my scan and an echocardiogram.  I picked up my contrast and started drinking while waiting for the echo.  The contrast has to be sipped over 1 ½ hours--it's no small amount.  It's so disgusting and gives me such gastro distress after.  It's not a day (or night) I look forward to.  I hope I will hear something tomorrow.  My nurse will hear from me tomorrow afternoon if she doesn't call me before that.  The anticipation is agonizing.

On Friday I get my hormone shots and meet with Dr. Prystas. I pray we have happy, positive things to talk about!

Mat and I have been talking about getting into a house again (we live in a condo right now).  I have this intense need to have a garden to work in.  I want to create a beautiful space for me and my family.  I also have an intense need to have a home where we can invite people over, where my kids feel comfortable inviting their friends over.  I want the kids to want to hang out at our house.  So, we are working on that.  All we need now is the house!

Homeward Bound

After leaving Nauvoo, we headed west on I-70 determined to drive as long as we could stand to.  We drove about 10 hours and made it as far as Hays, Kansas ... when this happened.

We could see dark skies ahead of us as we drove, and then the rain started pouring down.  Semi trucks were pulled over under the underpasses.  Cars were driving very slowly with their emergency blinkers.  I pulled this up on my phone, we were right in the middle of it.  We decided it best to pull off in Hays, just to be safe.  We took refuge in IHOP!  The storm passed as we ate dinner and we continued down the road.  We stayed in our first hotel of the trip that night because none of us wanted to set up the trailer again.  😜

Mat trying NOT to raise the trailer to get a
few things out that we needed for the night.

The next day we made it to Colorado where we spent some quality time with my friend Olivia in Lafayette.  I've known Livi since we were teenagers.  When I was 16ish, her family moved into our ward in Kaysville.  She was a beehive, so I was sure she wasn't cool enough for me.  After we both got married, her little family moved into our ward in Bountiful.  Her oldest is Isaac's age so we would get together occasionally for play dates and lunch.  One day when she was walking out my front door, she said "I've decided we need to be friends!"  And so we are.  They've lived and traveled all over the world and I love to hear about their adventures.  I'll always remember her frankness, like "Duh, we should be friends!"  I've retold that story a number of times over the years, because isn't it just a no brainer to be friends with everyone?!

She is a gracious host and took great care of us.  We had awesome food and went to an ice cream place called Sweet Cow.  I had gingersnap ice cream (on her recommendation) that was the best!  It was so fun to catch up and see her nearly grown up kids and awesome husband.

We had a scary/great experience on the way down I-70 in Utah.  When I passed through Green River, I saw a sign that said the next services were 124 miles away.  I looked at the gas tank that said we had 118 miles left on our tank.  I should have turned around.  But those "I just want to get home" thoughts creeped in.  "Maybe our car will go a little longer than it actually says".  About 60 miles further into the nothingness of Grand Staircase, I told Mat I wasn't sure we would make it to a gas station.  I didn't admit that I saw the sign and figured we wouldn't make it when we were back in Green River.  It didn't help that we didn't have a signal, so no Googling the nearest gas.  Or town.  Eventually we saw a sign that said Emery, UT was 12 miles off I-70.  And since we only had about 18 miles left on our tank, we took a chance.  We didn't know if we would find a gas station in Emery, but we prayed we would!  We were lucky they did have one gas station with one gas pump.  As we drove back toward our route, I ate my humble pie and thanked HF for his help bailing us out of that one.

A view area somewhere off I-70 where we found bathrooms ... but no gas!

Nauvoo and Carthage Jail

Me and Mat went to Nauvoo 20 years ago, so it was drastically different this time!  Remember when President Hinckley announced this temple?  I remember the audible gasp from the congregation at the Conference Center.  That was such a great time!  It's a beautiful temple inside and out.  Me and the girls did some baptisms, I was so grateful to have them there with me!  Mat and the other kids saw some of the sites, then we met at the evening musical program with the young and senior missionaries.  I spent an hour at the Lands and Records office and found that I have more ancestors than I thought that owned land in Nauvoo and the surrounding area.  It's fun to know that, I want to dig deeper into our family history and learn more about the people that came before us.

taken as the sun was setting over the Mississippi River

It was a blessing to run into my cousin, Kathleen, and her family!  Her daughter is one of the performing missionaries.  Unfortunately, she's very ill, so they were there to take her home.  We got to see her in her last performance.  She had to leave her mission 19 days early.  All the performances were so great, the pageant included!

I'm grateful the church has preserved the place our first prophet was martyred.  There is a special spirit there.  For a long time I thought that Joseph, Hyrum, and the others were betrayed by the jailer (who lived on the first floor).  But it didn't happen that way at all.  He was away when the mob of hundreds of raging men came and forced their way in. Knowing they were being held upstairs, they rushed up the stairs while others surrounded the building, guns at the ready.   I'm including a picture of what Lucy Mack Smith wrote on seeing her murdered sons:

Washington DC

It poured rain the entire time we were in Washington D.C.  We were soaked to the bone, despite our umbrellas and rain ponchos.  There were specific monuments we wanted to get to, and tried to be strategic in our planning!  But the National Mall is so big, there's a lot of space between those monuments!

MLK

Lincoln

One of the most decent, ethical presidents we've had (in my humble opinion!)

Vietnam
I went there to find the name of my cousin's birthfather.  She never met him so it was an honor to find his name and get her a picture of it.

James C. Jensen, killed in action May 1972

Washington

Holocaust Memorial Museum

Of all the memorials, this is the one I didn't want to miss, no matter what!  You learn about how Hitler came to power, how he manipulated the system to his benefit and for his agenda.  You learn about how, step by step, the repression of Jews and other "unfit" populations started.  You learn about the promises of work and prosperity he made to the German people.  You learn about and see in pictures the atrocities meted out in concentration camps, the hard labor, starvation, disease and death.  You learn about the allies getting the upper hand, and the Nazi's last push to kill as many people as possible.  You also learn about the resistance, and the people who helped save Jews by providing safe havens for them.  There were thousands of people who worked against the regime despite the risk of death if they were caught.  These are the stories I love to read.  The most recent book I read was "Irena's Children" (written by Tilar Mazzeo) about the Warsaw ghetto.  Such an inspiring story that you should read!  Sir Nicolas Winton is another angel to check out, and of course Elie Wiesel.  He was instrumental in getting this memorial set up.

I couldn't bring myself to take pictures of anything but quotes, it just seemed wrong.  But hopefully I've portrayed well enough what the museum is like.

Washington DC Temple and Visitors Center

The temple sustained some damage after the 2015 earthquake and is being retrofitted and repaired.

Philly PA

We rushed through Philadelphia because we needed to make it to the campground in Maryland before night fall.  We went to the Mint and learned about the process of making our coins, saw the Liberty Bell and some of the historic sites close to that, and then of course, at some Philly Cheesesteaks.  😀

New York City

On the way to NYC, we made a slight detour in Rhode Island so we could go here.  There are lots of locations scattered all over the eastern part of the country, and we were determined to find one.  Remember when it was just down the road from us in Bountiful?  Many happy nights eating froyo with friends and our family at our favorite place!

It was kind of exciting approaching the city.  The energy, the buzz, the excitement of being in a place like that is fun.  It didn't last for very long.  😏

Mat found a campground (and I use the term loosely!) that was just over the water in New Jersey (not far by ferry to lower Manhattan).  As we drove through the neighborhood toward where we would stay for 3 nights, I thought we must be going the wrong way, or he was mistaken about the address.  I could not picture a campground in the middle of skyscrapers and apartments.  We ended up in a campground, all asphalt and gravel, right on the shore of New Jersey.  We had everything we'd had in the other campgrounds, expect trees and grass.  A little different experience, but it was relatively quiet and worked OK.

This was a first for me!  Never thought I'd see anything like it.

After we got there, we decided we had enough time to take the kids to Times Square.  I might have rethought that if I knew how many times we'd be in Times Square for other things.  That place is CRAZY in every sense of the word!

The lights, the chaos, and the people in Times Square = sensory overload. And just a little bit stressful when you're keeping track of 4 kids on top of it.  On the walk back as we headed for our subway stop, I pulled out my phone to take a picture of the Empire State Building.  I had my MetroCard in the same pocket as my phone in my purse.  When I pulled my phone out, the MetroCard fell to the ground.  I got literally two steps into the street when Brooklyn, who was right behind me, asked if it were mine.  Almost before I could react, a "nice" woman shrieked, "NO! THAT'S MY METRO CARD!" and grabbed it off the ground before I could get to it.  When we got to the other side of the street, I opened my purse to look for MY metro card.  Of course, it wasn't there.  I shrieked, "JUST FOR THE RECORD, THAT WAS MY METRO CARD!!"  She was long gone.  She no doubt needed it more than I did.  It was only a $30 mistake.  I was more careful after that.   

The Manhattan skyline with the barely visible Brooklyn Bridge

The next day, we went to Ellis Island and the Statue of Liberty.  Mat and I have been before, but I loved helping the kids understand the sacrifice thousands and thousands made to come to this country.

The building on Ellis Island is really cool, you learn about what people had to do to be accepted, including a "six second" medical exam.  People that were sick were either sent to the infirmary to get better or sent back to their countries.  It was fascinating to learn about, to think about how people felt after weeks and weeks on a boat, and seeing Lady Liberty come into view.  It makes me sad to think about those that got sent away, after sacrificing so much, then having their dreams dashed.

That second night, we went to see Anastasia on Broadway.  It was AWESOME!  I love going to musicals, but especially Broadway musicals.  They do such an amazing job!

The next day we went to the 9/11 Memorial and museum.  I didn't take many pictures there, there's a section of the museum they don't allow pictures in.  That's where all the personal effects are.  Shoes, purses, brief cases, ID cards, etc.  They have the timeline, minute by minute, of what happened that day.  From security footage of the hijackers getting through security, the flight patterns the planes took, the length of the flights, to the exact times the planes crashed.  They play the news footage, the bewilderment of people running away, and share the stories from survivors.  The fountains outside sit on the exact footprint of the building, and the water runs down instead of up.  The names of every victim from all the attacks are inscribed around the fountains.

We ended our time in NYC at a play called "The Play That Goes Wrong", which was hilariously funny and we laughed the whole time.  It was well worth seeing, if you ever get a chance!

This was hanging in the entry of an old church just off Times Square.  Well said!