Friday, April 27, 2018

Three Simple Words

I have a great friend named Ginger Johnson (I don't usually put last names on here, but she is a special case!)  She is one of the nicest, most charitable, forgiving souls I know.  She has been through a boat load of ugly things, and yet stays positive and upbeat and loves everyone around her.  She's a public speaker with a gift for being led by the Spirit and knowing what to say to her audience.  If you want to check her out, google "TEDx Riverton" to see her in action!  She is a stage 4 breast cancer survivor, currently with "no evidence of disease" or NED as we like to say.  She organizes the annual Soul Survivor Conference.  That is where I'm spending my weekend, at this conference.

One thing about her is that she has learned to control the positive and negative around her.  She just doesn't let the negative in!  She doesn't watch the news or pay attention to current events.  She only listens to KLOVE on the radio.  When any negativity comes, as it does for everyone, she releases or hands it over to God.  Today I listened to the amazing speakers she brought in and pondered on her ability to see beyond her diagnosis and into her future.  I've often thought, "I'm no Ginger Johnson.  I could never just 'will' my cancer away through positive thoughts and mindset."

The amazing thing is that she didn't prepare speeches for any of her presentations today.  Three profound words hit me right between the eyes.  She told the story of Shadrach, Meshach and Abednego.  They refused to worship the golden idol. The king threw them into the fiery furnace. They had faith that God would deliver them from their afflictions, if it was His will.  But if He didn't, they knew it would still be OK.  They would hold strong to their beliefs and convictions, no matter what happened.  BUT IF NOT. 

Daniel 3:17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.
18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.

We don't get to choose our afflictions or trials.  We just have to have faith that God knows what we need to make us the kind of people he wants us to be.  I think that no matter what "happens" in my situation, it will be exactly what is supposed to happen.  I went and talked to her at the end of the sessions tonight and told her that those three words, BUT IF NOT, hit me so strongly.  It's not my job to try to control my cancer.  I can do all the right things, eat the right food, have the right mindset, take the right drugs, but it may go south anyway.  That "but if not" coming from her was a great comfort to me, because in the end, I am not in control--even if I do all the right things!  It's a comfort to know that I can turn it all over to God and let Him handle it.  My job is to make the most of my time in between scans, love and make memories with my family.  💗

On the side effect front ... Ya know the nerve itching I've had on my back, shoulders and arms?  I now itch constantly from my neck to my ankles.  Last night was the first time the itching kept me awake most of the night.  My legs drove me crazy all night long.  I got some Gabapentin (sp?) which treats neuropathy, but the pharmacist told me it would help the itching too, but it will take about 3 weeks.  AND it's one that causes drowsiness.  As if I needed help with that ...

Sunday, April 22, 2018

Talent Show and Track Meet

I haven't had a heck of a lot of stuff to report this week, it's just been kind of average! I'm working at the nursery and liking that.  It's fun to hang out with Joann and Jenny, who I've known for many years in this industry.  I guess I don't mean "hang out" because there's no time to really talk.  The nursery has been so busy!  Tonight I started spring cleanup in the Bountiful yard I work in.  My normal is to have dirt under my nails!  Feels good to be back!

Isaac tried out for and got into the school talent show that was held yesterday.  My boss at J&J is completely flexible with me, but I ask for a lot of leniency!  I didn't feel like I could come in late, so I wasn't there for the assembly.  BUT we know lots of kids there, so I had someone take video of it.  That kid CAN sing!  The response from the audience was huge!  All his life he's been hiding that talent under a bushel.  😏

Brooklyn had her first track meet this week!  It brought back so many memories of my time in track.  I was never a world class, scholarship winning runner, but it was a good experience for me.  She didn't feel like she did very well.  I reminded her that it was her very first track meet, and she's only in 7th grade!  There's lots of time to improve.  She's a sprinter, her events were to 400 meter and the 4 by 100 meter relay (4 runners doing 100 meters).  I felt my OCD rise when I watched her practice with her group before the race.  I just wanted to huddle with the girls like I was their coach and tell/show them how to consistently hold the baton and pass it to the next person!  The way I learned how to do it when I was on a relay team!  7th grade, Mom.  It's going to be OK.  (breathing deeply)

Thursday afternoon, it occurred to me that I saw something about Maddie having her last choir concert at Snow this week.  I thought it said Tuesday?  So I texted her about it, she said it was that night.  I thought, What the Heck!  I still had time to get down there.  The kids didn't want to come, and Mat couldn't come.  So, 4 hours of audio book.  Win-Win!  I walked into the auditorium and found a seat, then saw Tag waving me over to where she was.  When I walked up, she was in tears.  "Mom! I need my Mom! I'm so glad you came!"  She's pretty stressed out about the million things she needs to finish up before the end of the week.  I'm SO GLAD I went!

I can feel my worry slowly rise as I get closer to me next scan.  I think to myself, "if I only ate more greens" or feel guilt over eating at Chik-fil-a this week (because it was 5 p.m. and I hadn't eaten since breakfast-running all day-and if I didn't get something RIGHT NOW, I was going to die!).  I still have a hard time with food and my thinking around it.  Like blaming my diet all my life on what I'm going through now.  (Except that most everyone else can eat the way I always have and don't have cancer!  And I did a pretty decent job with diet after my first diagnosis-so does food really matter?!) Ya, it does.  But sometimes I just don't care.

Monday, April 16, 2018

Eyelashes!

Not much is happening right now.  I feel relatively great!  I'm amazed at how well I function most days (other than fatigue).  I make my list for the next day at night before bed.  If I don't, my mind swirls around all the things I'm thinking about needing to accomplish!  A forest could be cut down for all the notebooks I've gone through in my life, writing my lists.

Last Monday, our neighborhood Hawaiians brought us a plate of Poni Po Po.  I don't know if you've ever had these, but that coconut milk based sauce is good enough to drink!  I'm so grateful they thought of us.  We devoured them before we ate dinner because how can you not??

About a week ago, my friend Melanie texted  and asked me how long my eyelashes were.  I wasn't sure what to tell her, other than "they're growing!"  And then she told me that she wanted to pay for me go to her eyelash lady to do mine.  What a cool thing that is!  I got them done today.  It totally made a difference for me!  It's another thing to help me feel a little bit normal in this life of mine that has been turned upside down.  Love you Melanie!  You have always been a blessing to me, I'm so grateful!

On Thursday, my friend Geri and I went to the Family History library downtown.  I wanted to start scanning my pictures and she was interested in learning about it too.  What I figured out is that I don't need to tear my books apart!  I can just lay the scrapbook page down on the scanner, and the scanner separates them into individual pictures/files.  How cool is that?!  The only problem is that it makes it harder for me to simplify my life by clearing out stuff.  How can I just get rid of intact scrapbooks??  Something must be done though, I'm NOT moving them to the next house.

I had infusion last Friday.  I also got the shots in my back side, AND I started another round of the study drug.  Triple whammy!  Sarah came with me this time.  It's always fun to have her with me, she's always been so good to me!  I don't like early morning appointments because sleeping good is NOT one of my talents.  And then I'm so tired during the infusion and often fall asleep during the treatment.  I take Ambien at night.  If I don't allow for 7-8 hours for sleep after taking it, I often can't remember conversations, what the doctor said, specific details or whatever.  And I just hope I didn't make a fool of myself.  Sarah would be one to tell me if I did.  That's the kind of friends we are.  😍

My next appointments at Huntsman are for my next CT scan and echocardiogram on May 2nd.  It's easy to get a tad bit anxious as I anticipate what the results might be.  My gut tells me that everything is stable right now, but I'll feel so much better when I see the actual numbers.

I saw this on FB and decided I needed to share it.  It's so true!  Pharmaceuticals certainly have their shortcomings.



Wednesday, April 11, 2018

The rest of spring break


We had a great time last week, visiting Santa Fe and Phoenix.  It was great to get away for a few days and do things we've never done!  I was fascinated by their outdoor plants that we can only grow indoors here (or not at all).  The different varieties of cactus, yucca (bluck - never liked it, still don't) and agave were awesome!  My favorites were the Organ Pipe Cactus and the giant blue Agave.

Barrel Cactus


Mesquite tree

These were at least 15 feet tall



Pretty Cool Stuff!

We went to the Phoenix Zoo with Jeanne and her grandkids, so fun!
Brooklyn, McKinley and Zoe rode the camels!  

I can relate to this.  Sometimes all I want to do is bury
my head and go to sleep too!


We also went to the Musical Instrument Museum, which was fascinating to me!  They had the history of music from most countries, and all regions of the world.  I was most interested in African music because I am listening to "Roots" by Alex Haley right now.  Music and drumming were an integral part of their lives.  I had to check out the Gambia.  But I also loved the European countries!  That's where I served my mission (Germany) and we were there last summer.  Hearing those Swiss Alp Horns ... aahhh.  Makes me want to go back!


















As far as how I'm doing, I feel better than I have in a long time.  I still itch all over and I get tired quickly, but most side effects aren't bothering me right now.  I'm back to work and feel good doing my normal things.  How am I emotionally?  I'll tell you after May 2nd!  That's when my next CT scan is.  I can only assume that things are stable and the drugs are working right now.  That's what it feels like anyway.

Mat has been debating about moving back to a junior high so he doesn't have so darn much to do.  There are a couple of junior highs in Jordan that have choir jobs open, but they aren't full time music. I asked him to put together a monthly schedule of the things he does so we could go through it and make sure he's only doing what he has to do.  I say "we" because he wants to do everything, including all the optional stuff (because some of those activities help the kids musically).  For the last several years, we've talked about cutting out the unnecessary, optional activities--but sometimes they show up again the next year.  😉  The other night we went through this list and talked about every single event, concert, festival, and narrowed down the list to only the most important things.  I told him if anyone has a problem with him simplifying his life, just give them my phone number!  I'll tell anyone who thinks their activity/event is more important than him being with home with family WHAT I THINK!

I had my support group today and loved the discussion we had!  One thing we talked about is legacy, the legacy we will leave behind, and how to work on getting things done.  I wanted to talk to the other ladies about how they view legacy, what it means to them.  I thought about this early on, as I mourned thinking about my posterity that I may not get to meet in this life.  This is why I'm digitizing books, writing my history, typing journals, scanning pre-digital photos, etc.  What if I live another 40 years?  I'll be very grateful to have the first half of my life done already!

I also got my monthly magical massage today.  Thanks to Diane who is the best out there, it always does me a world of good!  I wish I could do it more often.  Poor McKinley called me from school this morning, stomach flu.  She stayed home the rest of the day, coloring and watching PBS Kids.  She got a little nervous this afternoon because she forgot where I told her I would be.  I had 5 voicemails from her when I got out of the massage.  Her last message was just 7 seconds long.  In a very tearful voice, she said "Please come home."  I reminded her again when I got home that she can always go talk to a trusted adult if she's scared or nervous about something.  We have a some neighbors here that are "trusted adults," I hope she will remember to seek out help when she needs it.

I told her about an experience we had when she was very young.  We were at a hotel in southern California headed up to our room.  Maddie had McKinley when the elevator doors opened.  We all got on, but McKinley didn't make it before the doors closed.  We were panicked to get back to her, and I knew she was having a complete panic attack too!  We rushed back down to get her, she was crying and so upset!  She doesn't remember that happening, but sometimes I wonder if her anxiety about where we are doesn't stem from that incident.  It was so scary.

Thanks, as always, for all your love and concern!  We are so blessed, even when things are going relatively well!  It's a huge blessing for me to know that I have a few dozen people I can call at any time if I/we need help with something.  💗

Wednesday, April 4, 2018

Our Maiden Voyage

We got off late (of course!) and stayed in
Cortez, CO our first night.
Everybody but Maddie has this week off for spring break, so we got out of dodge!  We wanted to take the trailer out once before we do our big cross country road trip this summer.  We've learned a few things that I'm glad we know now and not later!

We've heard great things about Santa Fe, NM so we headed there first (because, why not?!).  I didn't realize that Santa Fe is over 7000 ft so we had some pretty cold nights!  Having heated mattresses helped with that and we all slept reasonably well.

A couple of nights in, as I waited for my feet to warm up, I realized I hadn't thought one time about having cancer.  We were just a typical family on a road trip together.  We were problem solving and helping each other.  We played card games and talked.  It's been so fun!  I love road trips!  And I loved noticing that I can distract myself with fun stuff and forgot about cancer sometimes.

I love the very old twisty junipers
you find in places like this!
Mesa Verde is such a cool place!  I'm glad we went out
of the way and got to see these amazing structures.

















We shopped in Sante Fe and ate at Maria's (a Mexican place) because it came highly recommended by a couple of friends.  Mat and the kids went to a place called Meow Wolf - I'm not sure how to explain what it is!  They loved it!  I really wanted to go to Canyon Road which is lined with art galleries up and down both sides of the street.  I love to walk Park City Main Street and look in the galleries.  I realized after I got there that I was in over my head, it was pretty obvious that "I" was not their target customer!  It would have been funner to go with someone who can fake it better than me.  😂

I loved the turquoise jewelry I saw everywhere, I had NO idea how expensive it is!  I saw a necklace in a Santa Fe shop that was perfect, except for it's price.  Everywhere I looked, it was just more than I could justify spending!  There was a trading post on the state line we stopped at, and I found turquoise beads on wire strands that I could better afford (barely).  So I'm going to try to recreate the necklace I saw in the shop.  Because that's what I do!

Now we're in Phoenix visiting Mat's sister and family.  It's quite a bit warmer here, it's forecast 93 degrees tomorrow.  😎  We went to the Phoenix (in Glendale) temple today, to walk the grounds and take some pictures.  We also went to DI because there is one a couple miles from here! Everyone but me found one or two treasures.  There's one in Mesa too, so we'll probably visit that one when we go to the zoo and botanical garden.  It's what Ulmers do.


Bougainvillea at it's best!

























Another Agave of some sort, I love the color!

I think this is Agave, they have a very sharp
tip that could impale anyone that got too
close.  I'd love to see them in bloom!