Lucas-isms- Fascinating Behaviors of my Awesome Autistic Son

Every person on the Autism Spectrum is different.  This post celebrates the unique differences of my 10 year old son Lucas.  He is one of the reasons my life never has a dull moment.

Sayings:

"Mom, you're like a humpback whale"- this one is a compliment.  Humpback whales are very cool.  Whales of any kind are cool, but humpbacks are best.  As with all of these things, don't ask me why.  I have no idea.

"I HOPE....."  I hope school is tomorrow.  I hope I'na peanie butter sandwich.  Not I think, I hope.

"Butt-crack".  His current insult of choice.  Everyone is a butt-crack at one time or another. Especially his brothers.  They are "butt cracks" a LOT.  

"Is it three o'clock?" This question is asked MANY times a day when he is home.  We put up sticky notes by the clock to remind him when it is three o'clock.  Because 3:00, you see, is when he gets to use the iPad to watch whale videos.

"Mom, how you spell Aquarium (or a type of whale, or anything to do with the ocean)?" so he can look it up on the internet.

"I'na go aquarium.  Can we go aquarium?". Lucas would go every day if I would let him.  He likes to touch the sharks and rays in the petting tank. He is in heaven doing that.

"Bless we have a wonderful weekend" in EVERY prayer.

"I'na pancakes with sugar".  "I'na rice with butter"- his two favorite things to eat since forever..

"Mom, you forgota...  " whenever I've taken too long to do what he wants me to do..

"I can't take this any more!!" (wonder where he got that one- cough, cough).

Trouble, Us?  Never.  Having fun camping.

Obsessions:  

• The movie Polar Express (until about age five) .  When Luke first learned to talk at all, in fact probably until he was about four, "Polo Epess"  (Polar Express) was his answer to any question asked him by a stranger.  "What's your name?"  "Polo Epess".  "How old are you?"  "Polo Epess". The movie was his obsession at the time. 
• Thomas the Tank Engine 
• NIght at the Museum 
• Other movies to a lesser extent- Transformers (which we didn't let him watch, but he loved anyway), Madagascar, Ice Age. He liked the exciting parts.
• Whales (and to a lesser extent sharks)- this one has been going for the longest time of any obsession.  Lucas can recite the Disney movie Oceans (or at least the parts that have anything to do with whales).  He can identify whale types and tell you random facts about many types of whales.  When he wants to make conversation, he will ask you questions about whales or sharks.  "Mom, whale sharks have gills?"  He, of course, already knows the answers to these questions.  

Lucas and one of his favorites

 
Stimming objects:

"Stimming" for the non-autism savvy, is self-soothing repetitive behavior.  Self- stimulating behavior (no, not that kind, at least not at this point.  Oh dear.  I don't want to think about that...)  Lucas' particular brand of stimming involves flipping things around in his hands, always in pairs.  

• Fingers, always available  
• Polar Express tickets.  During his Polar Express obsession, we printed multiple "tickets" per day on the computer.  He always needed two at a time. 
• Bandaids.  He used to randomly tell people "I like Bandaids, not stickers". Every time we went to Target we had to buy bandaids. 
• Movie/DVD cases.  I had to take all of our movies out of their cases and hide the cases or he would steal them and/or take them outside and lose them.  
• Fruit snacks boxes- he used to love fruit snacks so much that he would ask for them for Christmas.  He always wanted fruit snacks for movies that didn't have them, like Night at the Museum. 
• Receipts, long, undamaged, unfolded and bent are best, preferably from Costco (could it be because those are the longest receipts we have? :) 
• Socks, this is the latest stimmer obsession.  He will take his socks off if no other stimmers are available and flip them around.  Why socks?  I have NO IDEA.

One of Luke's favorite Christmas gifts- a documentary

I love my Lucas.  He is a wonderful boy.  A big-time challenge?  Yes.  Do I get sad sometimes that he's not doing "normal" ten year old boy things? Yes. Very.  But he's still a joy.  

Don't believe me?  Watch this video, made by my son Garrett for the end of school a couple of years ago. 

What's your favorite thing about Lucas?  Have any questions about Autism or life with an Autistic child?  I'd love to hear from you.  Leave me a comment below.

Before and After- Getting Organized

Craft cupboard BEFORE-notice everything
shoved everywhere.  Yeah.  Classy.

Cupboard AFTER- all labeled and purdy.  

 In which I come clean (groan) about tackling some of my biggest messes...

Pantry BEFORE-an
overflowing mess

I've been sick these last few days with Strep Throat.  Big Yuck.  Before that, though, I was a lean (well, not quite), mean (not usually, but sometimes) organizing machine.  I've cleaned out and organized three bathrooms, three bedroom closets, a file cabinet and a whole kitchen full of cabinets and drawers (including the mother-of-all-junk-drawers). There's more still to do, but I'm making progress!!

Pantry AFTER- notice the labels

What brought all of this on?  Well, I've been temporarily unemployed, and found myself a SAHM with kids at school all day for the first time in well, ever.  So, my "someday" has come.  Organize I must.

Pantry door AFTER

Here are some things I've been learning as I organize:

*Bite off a small piece at a time.  You probably WON'T get your whole pantry cleaned out in one shot, and that's okay. Set yourself a time limit and see how much you can get done.

Love this labeler

*Start with easy projects.  You will feel a satisfaction from completing them that will help you keep going through the bigger ones.

My "junk" drawer.  This,
my friends, is a miracle.
Wish I had a before shot.

Just picture everything 

here, plus more, all

stirred up together

*Labels are your best friends when it comes to organizing.  I got a labeler for about $15 at Walmart and it has served me well.  It helps me, and especially the rest of the crew here at home, put things back where they go past the original organizing. It also makes you feel good about yourself to see everything nicely labeled, lets be honest.

*I sort things into four categories :  keep, throw away, give away, and put away somewhere else in the house.  Organizing experts seem to say that if you haven't used an item in the last year you should get rid of it. Some people say six months is a good enough time frame, but that seems a little extreme to me.

Clear plastic shoe organizer works
great for gloves and hats

*Watch organizing videos on YouTube for motivation as you work.  Peter Walsh has some good tips, as well as a very motivating Facebook page .  There are also MANY blogs, magazines and books devoted to the subject of getting organized, but sometimes I feel like many of them are just trying to sell me things. I mean, the Container Store is great and all, but as much as I might like to I just don't have the money to fill my house with their stuff.

*Be patient with yourself.  I've had time lately to do this that I have never had before.  You may not have this time, and that's okay.  You know what your values and priorities are, live them.  If you do have time, though, fit in a little organizing.  It feels good and helps you not only feel better about things, but also helps you save money because you don't re-buy things you already have just because you can't find them (not that I have EVER done that...).

Re-purposed Ikea shelf

Honestly, that's about it.  My organizing is certainly not "pristine" or "perfect", but its getting better.  And, I have to tell you, it feels pretty awesome to actually be tackling these things.  

Now if only the rest of my house hadn't been totally trashed since I've been sick..... 
Ah reality....


How about you?  What works for you when it comes to organizing?  Any tips I've forgotten?

My Top Ten (um, well Fifteen) Tips for Surviving and Enjoying Wedding Planning

Jake looks things over right before
the big event.

This last year we had a daughter and a son get married within six months. 

Looking back, I'm not exactly sure how I survived, especially since I was working two jobs and keeping our family going at the same time.  Don't get me wrong, the jobs were a blessing, because they allowed us to be able to PAY for the two weddings. It was tough at times, though, and I learned a lot. 

Here are my tips for surviving, and yes, even enjoying wedding planning, whether for yourself, or for your kids (it really was lots of fun, most of the time):

15.  Get started early.  Look at sites such as Pinterest for ideas on color schemes and decorating.  Be careful with attending bridal shows, they give the impression that you HAVE to have everything they are advertising, and you really don't.  

Outside the Salt Lake Temple

14.  Book your venue ASAP.  If you are getting married in a popular church or LDS temple, for example, spots may fill up fast.  Also call around to reception venues for their prices and availability. Consider a mid-week reception to save money, or ask family/friends if you might be able to host your reception in their beautiful yards.  They may be happy to oblige, especially if you offer to pay for additions to their landscaping (flowers, lighting, etc) that they can enjoy even after the event.

13.  Enter contests to win freebies.  Even if you don't win, you may get valuable discounts.  My daughter did this with wedding photography, and even though she didn't win the "grand prize" she did get a voucher for a $250 session.

12.  Have something to do at your reception.  We had a photo booth at my daughter's wedding that was a lot of fun and only cost a few hundred dollars.  The groom's aunt and uncle brought a wonderful sound system and had a great time putting together a playlist for dancing that was perfect.  People even danced! 

Me doing a hip check with the groom's mom

11.  Give relatives the wedding colors far in advance of the event, so they can wear color coordinating clothes if they want.  It helps nieces, nephews, etc. feel a part of things without you providing them with an outfit.

10.   Use local websites such as ksl.com or Craigslist to find deals.  We found our linens, chair rentals, and photo booth this way.  We saved money and were very happy with the service.  Ask for references before you book with an unknown company.

9.  If things go wrong, ask for a discount or "freebie".  The TV at the hall where we held Mikell's reception wasn't working on the day of the reception and so we had to bring our own TV, which was a hassle.  I expressed my frustration at the inconvenience, and we got two extra hours to set up at no cost.

Grandmas linens on the tables and chairs

8.  Speaking of which, allow plenty of time to set up your decorations.  It will take more decorations, and take longer to set them up than you think.  Bring extra decorations along with you when you set up- you may end up using them, and you will be glad that you don't have to make an extra panicked trip. Raid your house, and ask your friends if you can borrow decor items from them that fit the wedding theme.

7.  When people volunteer to help, take them up on their offer.  Let them run an errand for you, help you clean your house for guests or help serve at the rehearsal dinner.  Don't ask for too much- say "Could you help serve from 6:00-8:00pm?".  Be specific. Have everything they need ready for them when they come to help and be sure to thank them afterwards!

6.  Assign people to be in charge of things like food, decorations and music on the day/night of your event.  You will be too busy during the event to be in charge of everything, and besides, you want to be able to enjoy yourself and visit with guests.

5.  Don't put things off until the last minute.  If you are sewing or buying clothing for the wedding party, for example, make sure that you are done well in advance of the event, so that minor adjustments can be made if necessary. 

The "sibs" catch a dance

4.  Keep the food simple.  Very few people really care or remember what they eat at a reception.  Have something savory as well as something sweet, if possible.  We did nice meats and cheese from Costco on borrowed platters, chocolate dipped strawberries that we made ourselves, and water with lemon in it in pretty decanters.  That, plus the cake, was PLENTY, and cost us a fraction of what it would have been to have even the simplest food catered. When it comes to the cake, get recommendations from people you know and trust before you go with an unknown to save money.  Just because a cake is cheaper doesn't mean it will be a better deal if it is late, doesn't taste good or doesn't look as promised.

Mindi's Floral did a beautiful job

3. Ask for favors/discounts.  If you have friends/acquaintances who are in wedding related fields (florists, cake decorators, photographers, etc.) see if perhaps you can come to a mutually beneficial agreement.  People who are building their businesses may be willing to work for a discount if you give them promotion at the event (put out business cards, etc.) and through social media afterwards if you are satisfied with their service.  We did this, and it worked out really well for us, and got more business for our friends.  Its a win-win.  

2.  Let the bride/groom make their own decisions.  This can be hard for the Mom, but you don't want to be THAT MIL.  It is THEIR day, after all, even if your day, way back when, wasn't all that great and you really wish you had done XYZ so you REALLY want them to do it.  

And, (drum roll please)....

My most important tip-  REMEMBER THE BUDGET!!

1) Set a budget

2) Share that budget with others who are helping you plan

3) Use your budget to help you make decisions 

4) Keep track of your expenses and... 

STICK TO YOUR BUDGET!!  

This will save endless amounts of grief, stress and conflict before, during and after the big day. When its all over, whether you had the perfect wedding favor or hors d'oeuvre won't really matter anyway.  Its the people you will remember.

Speaking of people, THANK YOU AGAIN to all of those friends and family who helped with our 2012 weddings.  We couldn't have done it without you.

Our family on Matt and Mikell's big day

Do you have any wedding planning tips I may have forgotten?  Please leave a comment.

Two Weddings: Part Two- Garrett and Ashlie

Garrett and Ashlie were married on August 17, 2012 in the Salt Lake City LDS temple.  They had been dating for over three years, and we'd been feeling for a while like she was almost a member of our family.  She'd seen us hug our kids and yell at them.  She'd been on camping trips with us and seen us with morning hair. Garrett and Ashlie have always had a relationship remarkably mature for their years. Ashlie is truly one of the nicest (to everyone), most compassionate people I know, and the two of them are a great fit for each other.

Right after he asked her

It was on one of our family camping trips that Garrett and Ashlie got engaged. Garrett was so cute and nervous.  He proposed to her on the beach when we first got to the Bear Lake.  Her family had secretly driven up there too, and we all waited in the bushes until he gave us the signal to jump out and share in their happiness.  

It was different being on the "grooms" side of wedding planning. Not as involved as with Mikell's wedding, but still a pretty big deal. 

Ashlie, as anyone who knows her could probably tell you, has a unique spirit.  She calls her style "hippie chic".  Ashlie designed her own ring, a green amethyst surrounded by a halo of diamonds.  She found her dress at a bridal store, then added sleeves and modified the hem to show off her crocheted barefoot sandals.  Instead of a veil, she wore a pretty headband.

My kids (old and new) outside the Salt Lake Temple

I volunteered to make the bridesmaids dresses for their wedding, just like I had for Mikell's.  They were made of off-white eyelit and had somewhat of the "hippie" vibe.  There was a bit of drama as necklines went up, came down, then back up again for some.  Sleeves were modified (too "poofy", don't like the bands) and ribbons added.  In the end, they turned out great, just like everything else Ashlie puts her mark on.   

Linens from Great Grandma

As part of our "grooms side" duties we were also responsible for the "Rehearsal" dinner the night before the wedding.  Partly out of my need to save money, and partly because we wanted to include everyone we could, we decided, against the advice of those who loved us and worried for our sanity, to do the whole dinner ourselves (with help from family and friends, of course).  It was actually lots of fun with yummy food, vintage decor (including handkerchiefs from Garrett's great-great grandma) gathered from here there and everywhere, and silly games and visiting.  

Mikell at the reception

The wedding itself was wonderful. I felt so blessed to be sitting there in the beautiful Salt Lake temple with my family around me.  SO blessed.  Couldn't keep the tears back no matter how hard I tried.

Ashlie and her family put on a great reception in her family's back yard.  It was beautiful and so much fun.  The highlight of the evening was when we all embarrassed ourselves by doing a "flash mob" on the family's deck.  Spence didn't want to do it at first, but we all ended up having a blast. You can watch us make fools of ourselves below.  

After the flashmob the reception wound down, paper lanterns were lit and released, the happy couple drove away and those brave (and crazy) enough jumped (clothes and all) into Ashlie's family's pool.  

A fitting end to a wonderful wedding and reception, Garrett and Ashlie style.  

What is your favorite memory from Garrett and Ashlie's wedding?  Leave a comment below.

Two Weddings: Part One- Mikell and Matt

We had two weddings in our family this past year.  Two of MY CHILDREN are married.  This is entirely weird, but entirely wonderful and right-feeling at the same time. 

My daughter Mikell and her now-husband Matt Koster were married April 21,2012 in the Oquirrh Mountain LDS temple.  It was a beautiful, but crazy, day, fairly long in coming since they were officially engaged at Thanksgiving, and "basically" engaged long before that. 

Getting ready for a wedding was a new experience for me.  In Pride and Prejudice when oldest daughterJane and Mr. Bingley announce their plans to get married Jane's father states   "You are a good girl, and I have great pleasure in thinking you will be so happily settled. I have not a doubt of your doing very well together. Your tempers are by no means unlike. You are each of you so complying, that nothing will ever be resolved on..." 

Spence and I have joked that this quote could DEFINITELY have been written about Mikell and Matt when it came to wedding planning.  What should we do about (flowers, the cake, decorations, food, etc. etc. etc)?  I don't know, what do YOU think?  I don't know, what do YOU think?  Round and round. 

To be fair, Mikell always said that it wasn't that she was indecisive, it was that most of the details didn't matter- the fact that she was marrying the right PERSON in the right place was what mattered.  The reception was just a party, after all.

Everything came together remarkably well.  We got an amazing deal on a dress that she loved and that fit her perfectly our first day shopping.  The mother of the boy Mikell was voted "Most likely to get married" to in middle school volunteered to do her flowers at cost.  A friend who was building her photography business gave us a great deal since it was her first big wedding shoot.  My daughter Erin was working for an invitation company at the time, and was able to get beautiful invitations for a great price.  Friends and family came from across the country and world to help.  It was a beautiful day.  One thing after another just fell into place.  

That's not to say that the whole thing wasn't stressful.  Oh my, no.  I was an emotional basket-case for most of the day.  Matt walked in on my husband Spence and I "exchanging words" just before we went to set up the hall for the reception.  Oh dear.
 
And we had been up until 4:00am dipping strawberries the night before.  

I don't think I really relaxed until the reception was most of the way over.  Then, I didn't want it to end.  

If I had it to do again, I wouldn't change too much.  I'd take better care of myself, and take on less (sewing, food, decorating, etc) if I could afford to.    

That aside, it was a wonderful, fun, big-ole parental pay day, capped off by Matt and Mikell telling us that everything was "Perfect" and that they "Wouldn't change a thing". Whether that is entirely true or not, it means a lot to me that they've said it.  Click on this link to see a great video summary of the day from their photographer.

Love, love love them.  More now than I did the day they were married.  I'm excited to have Matt in our family. I'm not sure I could pick anyone that would be a better fit for my Kell-Bell.  What a good guy.  I knew it from the first time he came to our house, before they were really even dating, when he played so well with and was so attentive to my little boys.  Yep, he's a keeper.

Lesson learning:  Stay tuned for this, thinking I'll put together some kind of "Top Ten" list of things I've learned after I write about Garrett and Ashlie's big day :)

What do YOU remember from Matt and Mikell's wedding? I'd love to see your comments below. 

Cancer Sucks, Part Four: Lessons from Cancer

This is the last post in my Cancer Sucks saga.  And its very overdue.  Life has been busy, crazy busy, these past months.  Lots of work, too much work.  Two wonderful (if stressful at times) weddings.  Vacation.  Parenting challenges.  Too much caffeine.  Not enough sleep. Lots of things I want to write about.  Things I WILL write about.  But for now, here is part four. Because I promised.  Because its important.

Lesson One:  Cancer brings out the best in people.  
Once I asked my oncologist if it was depressing working with people with Cancer.  She said no, that her patients were the bravest and best people she knew.  That she loved her patients because they were fighters.  Because they truly wanted to get better (versus some people who go to the doctor for attention, to complain, or for who knows what reason, I suppose).  I can see that.

I met an incredibly brave girl, currently fighting bone cancer, at the Oh Sweet Sadie gift show the other night.  I had found myself absent-mindedly looking at some really amazing tote bags tucked away in one corner of the large hall filled with vendors.  Mixed in with the bags was a picture of a beautiful young girl, with a caption below telling how she had begun sewing these bags while in the hospital for a YEAR of chemotherapy.  I turned around, and there she was, smiling at me.   I felt like I should say something, so I told her that her bags were beautiful, and that I was a two-time cancer survivor myself.  That was all I needed to say to be "in the club", someone safe to talk to.  She told me how she was happy because she would soon be getting her leg amputated.  Yes, happy, because the titanium replacement femur behind that long scar going down her thin leg had been causing her lots of pain and problems.  Happy not to have to use a crutch, as she had for the last two years. To be able to maybe ride her horse again.  She is so brave.  Putting on her best smile and fighting the fight.  Day after day, year after year. I went back to the show later in the weekend and bought one of her bags.  It cost more than my cheap self would typically spend, but who cares.  This girl is a quiet fighter.  A 16 year old hero. You can learn more about her, and see her bags, on her Facebook page or Etsy.

The next night I was at home feeling a bit sorry for myself because my husband was working late (again) when I stumbled upon the TV fundraiser "Stand UP to Cancer".  I had watched it last year and liked it, even bought the yellow "survivor" t-shirt, but I wasn't sure I was "up" for it again.  I decided to give it a chance.  

Ronan, age 4

Talk about a reality check.  Story after story of brave people- kids, moms, dads, people young and old, fighting the fight, loving their families, wanting to get better, participating in clinical trials to help others, even when they knew their own chances for survival were slim.  You can watch it on Hulu  and still donate here if you feel so inclined .  100% of money raised goes to Cancer research. Just be ready to maybe shed a few tears.  If you are a Taylor Swift fan, she sings a song about a boy named Ronan who died of Cancer that just might rip your heart right out, stomp on it, and then put it through the disposal before returning it to you.  You can watch her performance here, and see the reaction of the mom of the little boy its written about to the song here.   Man oh man. Big old slap in the face. I have no right to whine in the face of such bravery.


Lesson Two:  Its not about me.  
I've struggled with shyness most of my life.  Agonized about what to say, what people thought of me.   Hid in bathrooms at parties. When I had Cancer, I learned from amazing people that this was no way to live.   People like the man at church (now a dear friend), who asked me every week how I felt during my chemo.  Listened, commiserated.  He wasn't afraid that I wouldn't want to talk about it, that he would somehow offend me. I've tried to follow in his (and others') footsteps.   To remember that ITS NOT ABOUT ME.  The truth, I've realized, is that most people are too busy worrying about themselves most of the time to think about whether I looked fat, or said something dumb, or any one of a million other completely trivial things I've spent way too many hours worrying about.

This realization has helped me be more outgoing in many situations, to sit by that person sitting alone, to talk to that neighbor, to approach the person going through tough stuff, even to do better at work.  Its changed me. 

Lesson Three:  I do not have the things I have because I have earned, or somehow deserve them.  
I remember driving down the road one day during my chemotherapy and being overwhelmed with a feeling of gratitude.   Feeling gratitude that I had legs that worked, that I could see, that my brain could think clearly (sometimes :). Realizing on a new and deeper level  that all that I am, all that I have, isn't the result of something I have done.  All of it, every bit, is a gift from a loving Heavenly Father.  Yes, I do have a stewardship to make the most of my talents, my abilities, my situation, that's true, but without the blessings He has given me I wouldn't be able to do anything.  Its amazing the gratitude that going through something tough can bring. Its strange, actually.   I remember thinking, Man, I used to be such a whiner, always complaining about stupid little things like my kids being snotty or tough.  Like having to drive an old car.  Stupid, stupid things.  I remember thinking that I would never whine about those things again.  

Lesson Four:  We are not alone.
Sometimes in this life people let us down.  Even our friends, our children or our spouses can let us down. Life teaches us that we just can't rely on another person to meet all of our needs.  Its not being pessimistic to say this, its being real.  Its the nature of human beings to be imperfect.  

There is, however, someone who will ALWAYS be there.  We have a loving Savior who will never leave us comfortless.  I don't think I ever felt as much love, peace and support from  above as I did during my Cancer treatment.  Because, you see, I was never really alone.  I was carried.  This was my favorite scripture during the tough times:

John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Its still my favorite scripture today.

I'm still learning lessons from my Cancer experience. Learning to have faith.  Learning to not worry that every little ache and pain is a recurrence.  Learning compassion.  Learning to love and appreciate life and my blessings.  Learning patience and perspective.  

I've got a long long way to go, but I'm grateful for these "lessons learning".

Cancer Sucks- Part three- Treatment

This is the part in which I write about what it was like to watch an orange Koolaid-looking poison slowly drip into my arm, knowing that it was going to make me sick and hairless, and wonder if I even needed it.  The part where a little bundle fell from the sky into my arms.  The part where people were there for me. 


My oncologist, Dr. Patricia Legant,  came highly recommended.  She is a no-nonsense, no sugar-coating kind of doctor, but one with a heart who really knows her stuff.  She also knows how to write upside down on the paper that covers the exam tables in her office, so that she can, once again, go over those statistics with her patients, the ones I was too bleary eyed and hysterical to take in on that dreaded day at Huntsman.  Its an impressive skill.  I trust her.  I asked her once "Doesn't it get depressing to work with cancer patients all of the time?"  She said No, that she loves her patients and her job, that she is lucky because all of her patients desperately WANT to be better, I suppose as opposed to some patients in a more general practice setting, who (dare I say it?) sometimes are a bit hypochondria-prone.  

 I cried the first day I got my chemotherapy.  Somehow it made everything so much more "real".  Getting treated for breast cancer (and many cancers, I think) is so strange because YOU FEEL COMPLETELY FINE, and then you go to the doctor to do something that will make you feel sick. Something that you don't even know if you need to do.  Maybe they got all of the cancer in the surgery, and all of this is for nothing.  Taking "medicine" to make you feel sick? Its counter-intuitive.  


My doctor's office was in a dumpy strip mall near Cottonwood Hospital (she's since moved to the Huntsman clinic near my home).  Think pink and turquoise and southwestern paintings on the wall.   I had my chemotherapy treatments in a tiny little file room in the back of her offices.  I sat in a recliner while Sharon, Dr. Legant's nurse, made small talk and put the IV in my hand.  Spence sat by my side, always there, feeling helpless, I'm sure, as spouses of cancer patients usually do. I watched the orange-syrupy looking liquid slowly make its way down the plastic tube into my vein.  Poison, I kept thinking, this is poison going into my body.

We went to Costco right after the treatment and got a few things.  I didn't know what to expect.  I remembered my sister Lyn, and how sick she was with her chemo.  I remembered her throwing up, and the horrible open sores that completely covered the inside of her mouth, making it basically impossible for her to eat.  Maybe having chemo would make me lose weight.  That, at least, would be a good side effect.


The whole family was home when we got back, trying to pretend that life would go on as usual.  About 7:00pm it hit me- horrible nausea.  Now, you need to understand that I am a person who VERY rarely throws up.  Maybe once every five to ten years.  I think its a legacy of the night I spent at a sleepover when I was 12 dry heaving all alone in my friend's basement, but that's another story.


My sweet daughter Mikell heard me throwing up in the bathroom.  She came in and held my hair, rubbed my back, and told me it was going to be okay.  So sweet.  I'll never forget it.


I had treatments about every two weeks. I felt horribly nauseous but never threw up again.  I took every nausea medication on the market and they made things better, but far from perfect.  I was tired.  So tired.  I had gotten acrylic nails for the first time in my life just before my chemo in an effort to make me feel pretty.  My real nails started to turn black from the chemo  under the fake ones, so I had to take them off.  Things that I used to love tasted gross to me.  Diet Coke, that I had been addicted to, tasted like kerosene.  The only things I wanted to eat, most of the time, were eggs and toast (I couldn't eat soft eggs for a couple of years afterwards, because they reminded me of chemo).  I felt sicker with every treatment, until I basically felt no drop in nausea between my third and fourth treatments. It was hard, but not as bad as it is for some people.  I was blessed.  I had four treatments, each two weeks apart, of Adriamycin and Cytoxin.  I was supposed to have four more treatments of Taxol after that, but I didn't.


I had been feeling unsure about having the Taxol ever since I started chemo.  I had heard about its side effects, and how they can be long lasting.  I was especially concerned about the potential for permanent nerve damage and chronic pain.  I prayed and prayed about what I should do.  Finally I decided to ask for a priesthood blessing.  I wanted the blessing to tell me whether I should take the Taxol or not, but it didn't.  It basically said that I would be okay either way. 


I told my doctor that I didn't want to take the Taxol.  I thought that she would be like the guys at Huntsman, telling me that if I didn't do it I "would die", but she wasn't.  She understood, and said that even if, heaven forbid, my cancer did come back some day it wouldn't be because I didn't take the Taxol.  I was thankful for that. 


This turned out to be one, of many, faith promoting parts of my cancer journey.  One day, several months after I finished my radiation treatments, my oncologist told me at a follow-up visit about a new study. Researchers had just recently found that Taxol was ineffective in treating patients with my type/size etc. of cancer.  If I HAD taken the Taxol, it would have been for nothing, and who knows what side effects I might still have today.  I feel that I was prompted not to take it, and I'm glad that I didn't.


An amazing thing happened one day about a week and a half after my first chemo treatment.  The phone rang, and it was the Division of Child and Family Services.  I was surprised, because we had told our social worker that, although we had said the summer before that we were interested in another child (probably a girl- we had Lucas and Max at the time) we couldn't consider a child now because of my health.  Why were they calling us?  Didn't they know I had cancer?


DCFS said that "a sibling of my boys had come into care", but that was all that they knew.  A sibling?  My boys have two older sisters that are with relatives of their birth mom, was it one of them?  I had no idea.  They asked me if we would be interested.  I couldn't believe it. I had just started chemotherapy! I told them to give us a call back after they had more information.  

It turned out that the "sibling" in question was a sweet little baby boy, who we now call Jacob.  We told them that, of course, we wanted him, that the brothers needed to stay together.  That this cancer was a temporary thing, that we had a good support system, that I was going to be okay.  I put on my bravest face as they interviewed us, and it worked.  


Some people have thought that we were absolutely crazy for taking in a newborn at the same time as undergoing chemotherapy, but honestly, it was a blessing.  Sitting on the couch snuggling a sweet newborn is a wonderful thing to do when you don't feel good.  Reminds you of the goodness in the world.  Sometime I'll write more about Jacob's story, another faith promoting experience.

Radiation was like this.  Mostly I napped :)

After the chemo, and a few weeks of recovery time, I started my radiation treatments.  Compared to the chemotherapy, radiation was easy for me.  I was tired, and a little "sunburned", but it was nothing compared to the killer nausea.  I got up early every morning and drove to the new IMC in Murray for a seven AM treatment, five days a week for six weeks.  It was a hassle, but really not much more than that.  I was tired, but I had been tired for so long that I hardly noticed it.

So many people were so wonderful to my family during all of this.  People who asked me how I was feeling, and really listened.  People who asked Spence and my kids how they were doing with everything, and really listened.  People who brought meals.  People who came over and took Luke and Max for a while so I could have a break.  Angels.

Race for the Cure- I'm in pink on the steps

Right after I finished my radiation treatments I participated in my first Susan G. Komen Race for the Cure.  Our whole family walked together, pushing the boys in strollers.  It felt awesome, and humbling, to be among so many others who had gone, and were going, through the same things as I was.  I think it was good for the family, too.  Made us all feel a little less alone.   I made a little banner at the survivor's breakfast that I still have hanging in my closet- my prayers and wishes for myself at that time. Its at the top of this post.

Not bad, I think.  Five years later, I think yep, these are them.  Still my prayers and wishes.


Next time:  I finally get to my Lessons Learned.