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.

Cancer Sucks- Part Two- Diagnosis

In my front yard right now.

This is the part of this story in which I tell about what it was like to have the bee-jeebies scared out of me when I was diagnosed, for the second time, with Cancer.  The part where I tell about what its like to have your world thrown off its axis.  The part where you lose your hair, but get through it.  The part where the love and support of others makes all the difference.  


This post may be very long.  Or it may turn in to two posts.  I am writing for myself, so that I don't forget what happened, ever, even when I am really really old and my memory is (like my 96 year old dad used to say) "like a steel trap" (not).  I am writing for my family and friends, who loved and supported me through it all.  I am writing for those who are clawing their way through Cancer right now, and need to see that light at the end of the tunnel.  


I hope that what I write is helpful.


In my post Cancer Sucks- part one I wrote about my experiences with thyroid Cancer. Definitely scary, but almost more of an inconvenience.  After my treatments for that were over, my life returned to more-or-less normal. I was a good girl and got my screenings.  I wanted to do all I could to NEVER walk down Cancer Street again.  Once I turned 40 I had regular mammograms and colonoscopies.  I started having colonoscopies young, because, as you may remember, my mother died of Colon Cancer when I was five (read about it here).  I've had several, and had pre-cancerous polyps that could have turned into full-scale colon cancer painlessly removed twice.  I am a big cheerleader for colonoscopies --go Colonscopies, go!!!-- because they've saved my life.  If you have a family history of colon cancer get your hiney (literally) in and have one.  If you are over 50, have one.  If your parents are over 50, march them in and MAKE (if you have to) them have one.  You can read about what my last one was like here. 


Anyway, I was due for a mammogram in August of 2005 but missed it for a reason that I'm sure I thought was valid at the time but can't remember.  October is breast cancer awareness month, so one October day my husband Spence came home with this little pink ribbon thingy that he got at work and stuck it on one of the shelves in our closet.  I saw it every day, and eventually the guilt got to me, and I re-scheduled my mammogram.  It was in November.  I went in, put on the lovely gown, sat down in the inside waiting room and smiled shyly at the other women who were there for the same thing.  They smiled awkwardly back, while we all pretended to watch something inane like Jerry Springer or Montel Williams (some kind of "high quality" television programming) on the little TV.  I remember feeling younger than the other people there.  


The appointment itself was uneventful.  The boobs were squeezed, the small talk made with the technician, the clothes put on, and I was home.  I thought nothing of it.  


I noticed that I had missed a few calls from Intermountain Healthcare on the caller ID, but again, thought nothing of it.  They were probably taking a survey.  Seriously, it didn't even cross my mind that the calls might have to do with my mammogram.  Then one day I got something in the mail from the Breast Care Center that said "We've been trying to reach you about the results of your recent test, please call..."  That got my attention.


I called, and scheduled a follow-up mammogram.  I was worried, but not too much at this point, because I had been reading on the internet (wonderful and dangerous place when it comes to medical information) that most of these things were false alarms (most are).  I had never felt a lump, still couldn't. It was probably just a shadow on the film, or some kind of cyst, right?


Spence and my brother Dan came over to give me a priesthood blessing.  I wanted them to tell me that this whole thing was going to turn out to be nothing.  They wanted to tell me that, too. They really wanted to, but they couldn't.  Instead they said, and felt, that this whole thing wasn't going to turn out to be "nothing", but that it wasn't going to be the end, either. 


They were right.  I remember the radiologist matter-of-factly showing me the lump on the ultrasound. Putting my fingers on my left breast and saying, "Can't you feel that?"  I honestly couldn't.  Or maybe I barely could, but it just felt like a lumpy breast.  Like my breasts always felt. Like normal.  


I was more or less in shock, numb.  They kept telling me that most of the time when you get something this early it isn't much of anything.  Maybe I would have to have surgery and then radiation, but the surgery is easy to recover from, and the radiation not that bad.  I would be like Cheryl Crow.  She never had chemo, never lost her hair, was right back there singing on stage.  Yeah.  That's how it was going to be.


My surgery was scheduled remarkably quickly.  My surgeon was awesome, and very re-assuring.  He, too, seemed to believe that this would turn out to be only a minor thing. It was right before Christmas, and my family babied me and was oh-so loving.  I actually remember that Christmas as being an especially sweet one.  After the New Year someone from IHC Breast Care called and asked if I would like to see a panel of doctors at the Huntsman Cancer Institute about what was coming up next.  It was a new thing, and they said it would be great, that I would be able to get all of my questions answered.


That appointment turned into seriously one of the worst mornings of my life.  They took Spence and I into a little room with a couch where one specialist after another came in to talk with us, loaded with an armful of fun that included new information on the size and spread of my tumor, conflicting statistics, scary ultimatums, survival rates with various procedures, and lists of horrible side-effects and long term possibilities that I had never even considered.  I started bawling, and couldn't stop.  We felt trapped.  Still they came in.  "If you have this treatment, your hair will of course fall out, you may get mouth sores, your nails may fall off and never grow back, you may have bone aches and possibly permanent numbness and neurological changes.  If you don't do the treatment, your cancer will come back, and when it does, you WILL die.  You may get lymphedema, and have to wear support-hose on your arms for the rest of your life.  Do this exercise every day to help that not happen.  And oh, by the way, if you have the breast cancer gene, your children will be at risk.  They may not want to take the risk of having children, and may want to have  mastectomies as a preventative measure."  Really. All said in a matter of fact way as if I were not a mess, sitting in front of them, crying my head off.  Said in a way that said "We do this all the time". Sadly, they DO do this all the time.  Hopefully they are better at it now than they were then.


I left feeling scared and confused.  I went home and cried.  A lot.  Cried until no more tears could come.  Cried more than I ever had before or ever have since.  


Life went on.  I went to work, got the kids dressed and fed.  Went through the motions. I was teaching high school, and told my students what was going on.  I think its good not to pretend like nothing ever goes wrong in this life.   They were great.  So supportive.  Lots of people were.


My ward (congregation) had a fast for me.  We had only been in our neighborhood for a year or so, and it was so touching to me how many people went without food and sent prayers my way.  So sweet.  I know it helped.  I remember feeling so loved and supported, and even feeling a physical burning in my chest on the affected side the whole day of the fast.  Almost like a cleansing burn. It was amazing and the support and prayers so appreciated.


My sweet neighbor and soon-to-be good friend who did hair took me wig shopping.  She had this great attitude like this was all a party.  We went to every wig store in the Salt Lake Valley, trying things on, laughing, making it fun as best as we could.  If you ever need a wig, drop me a line and I can point you towards the best places and give you some good info.


About two weeks after my first treatment, just as they said it would,  my hair started falling out by the handful.  It was crazy.  I'd just run my fingers through my hair and have maybe 100 hairs in my hand.  Then more than 100.  I put a pony tail in my hair and a baseball hat on my head and didn't touch it for a week, trying to make it last as long as I could.  Finally it was time to cut it off.  My sweet friend washed it in our kitchen first.  It looked like a dead cat was in the sink.  So much dark curly hair.  Then she cut it in a bob (I was used to long hair).  She said things like -  "Look how cute this is!  Lets try it even shorter, though- I want to see how you look in a pixie.   Oh my gosh, you look great!  You are totally going to rock the short hair when your hair comes back.  You totally have the eyes for it."  Even though my hair was much too thin to wear out the way it was, I felt pretty, and for that I was so grateful.  The next morning, when I took my shower, all the rest of my hair fell out.  All of it.  I was bald.  Me, the girl who had always complained about having too much bushy hair.  Once that part was done, though, it was done.  I honestly grew to think that hair is overrated.  It gets in drains, on floors.  Its just dead cells, after all, right? Kind of gross, if you think about it.


Much more to say, but I think I'll stop here for now.  I need to get back to (thankfully) normal life.  

Things to say about what its like to see poison dripping in to your veins.  About side effects.  About a surprise bundle of joy that fell into our home from above right after I started chemo. About wonderful people who were, and are, there for me, and for my family.  About what it means to be a survivor.  


About my lessons learned.

Cancer Sucks- Part One-Round One

NOTE:  When I say that Cancer "sucks", its not that I am saying that other things don't "suck" just as badly, or even much worse.  We all get our bag of troubles in our lives, and yours could very well be MUCH harder to deal with than mine.  This is just an anniversary for me, and a time to reflect.

When I was a kid, you didn't say the word "Suck" in my family.  It was a BAD WORD.  I still don't really like the word much, although (sorry Lyn) I do say it on occasion. 

Cancer sucks.  It really does.  I sometimes (shockingly) even call it- ready for this?- "Damn Cancer".   I know, you can't believe I said that.  You'll never look at my blog again. Get over it.


I watched my mother died of Cancer (colon), when I was five (see my post That First Pivotal Event).  I watched my sister almost die from it twice.  I grew up hating Cancer, but always thinking that it wasn't "my thing".  I had other trials.  Cancer wasn't going to be my problem.


But alas, I was wrong.  

Jacob at preschool graduation. 

The good news, HOORAY!!!!!!!!,  is that as of right about now I am a FIVE YEAR SURVIVOR of the dreaded stuff.  Go me.  I remember that I set off, with hair barely there, on a celebratory trip to Disney World with Spencer, my older kids and then-infant son Jacob five years ago today.  The same Jacob who graduated from preschool this week. Wow.  It seems like a long time ago.  So much has happened since.  


Cancer, real or imagined, is still a part of my life.  It seems like about every six months or so I have some kind of "scare" requiring testing and agonized waiting.  Thankfully, to this point, all of these scares have turned out to be just minor problems, or nothing at all.  


That wasn't the case five-and-a-half years ago, or fourteen years ago.  Those times, the scares weren't just scares. They were "IT".  The big "C".  The one that sucks.


ROUND ONE:  Fourteen years ago (wow).

Fourteen years ago I was a 30-something mom of young children. It was December, and I had a sore throat that wouldn't go away.  At the time, Spencer, Erin, Mikell and I were all performing in the Mountain West Ballet production of The Nutcracker. We did it for three years- one of those years we made Garrett be in it, too, as a party boy. 


I decided to go to the doctor for the sore throat.  He told me that it was just a virus and nothing to worry about, but while I was there he felt a lump in my neck that he thought I should get checked out.  It turned out that I had a walnut sized benign lump on my thyroid, but that within that walnut there was a pea-sized malignant growth.  


I remember standing in my laundry room with the door closed so no one could hear or see me, crying.  Thinking that this couldn't possibly be happening to me, that Cancer wasn't my "thing".  


During this round, though, I never thought that I might die.  My doctor told me "If you're going to get Cancer, this is the kind you want".  The survival rate for Thyroid Cancer is very high.


I had my thyroid out just before Christmas.  Everyone was very sweet and supportive. They babied me and brought meals.   I had to go for six weeks without any replacement hormone after the surgery, which was hard.  I was teaching at the time, and told my students what was going on.  I think that its good for people to know that other people are going through "stuff".  They were great.  I taught mostly from my desk because I grew increasingly tired.   I have a chair that we got secondhand that I painted, Mary Engelbreit style, during the last week when I was so tired that it was all I could do to sit up and paint for a while, then lean back on our couch and rest.  The chair still sits in my living room, I just can't seem to get rid of it.

My Cancer chair

After the six weeks, I went in to the hospital for a few days and got big-time radioactive. I was given radioactive iodine treatment by nurses who wore haz-mat-style suits.  Seriously.  It was like something from a science fiction movie.  When I went to the bathroom I was told to flush it six times, to get all of the radioactivity out of the bowl.  Being in the hospital was kind of a nice break.  I read and watched lots of DVDs that I wanted to watch.  After my hospital stay I went home, where for several days I was told not to come within ten feet of anyone else.  Try that one with young kids and a dog.   I remember waving goodnight from across the room.  Bittersweet memory. 


I was put on replacement hormone after that, and life quickly returned to normal.  I had follow-up testing, and my thyroid dose has been monitored and tweaked, but basically it hasn't been that big of a deal.  I had a great surgeon, I don't think that anyone even notices my scar.  


Generally, it was about as easy as Cancer could be.  Not fun, but not that scary, and not the end of the world.


Round two was tougher.  


I've already broken the cardinal rule of blogging, though, ("Don't make it too long") so round two can wait 'til next time.   

The Absolutely Necessary Rule

I once got some good parenting advice from a woman with eight children. They ranged in age from about 14 to 28 and all seemed to be intelligent, confident, NICE people. I asked her how she and her husband had managed to raise such great kids, and this is what she told me: "I only say "No" when it is Absolutely Necessary." I asked her what she meant by that. She said, "When my kids ask if they can do something, I ask myself: Is what they want to do morally or physically dangerous? If the answer is no, I say yes."

I've given this advice a lot of thought over the years, and tried to put it into practice whenever I can. Saying "Yes" isn't always convenient, and sometimes it makes me worry.  "Mom, can we build a fort in the living room?" That one's not too hard.  Re-folding ten-plus blankets isn't my idea of fun, but its survivable.   How about when your seventeen year old son wants to go out of town with his girlfriend and her family for a couple of days?   Much harder.  When I was in this situation I told myself the following:  "He is a great kid. He will be well-supervised.  It will be okay.  It is not morally or physically dangerous.  I have no real reason, except fear, for saying 'No'."  We said yes, and he was fine.  The fact that we said "yes" showed him that we trusted him.  And, from my experience, built our relationship more than two days of him moping around the house while his girlfriend's family was gone would have.

Had the circumstances been different, or with a different kid, my answer might have been different. With my three now-young-adult-aged kids, the "Absolutely Necessary Rule" worked wonders. They are great people and some of my very best friends in the world.  My role with them now is more to give advice than permission.  Its been an interesting transition, and giving up control of what they can and can't do is sometimes hard.  The answers that seem clear to me don't always seem that way to them.  I'm still learning  how to do this parenting-adult-children thing.

Maybe its a good thing that I'm getting a second chance at parenting with my young kids.  Maybe with them the Absolutely Necessary rule won't work as well, because of their special needs.  I think, though,  that mostly it will.  I guess time will tell.

World Autism Awareness Day- What are the Warning Signs of Autism?

I wouldn't normally put two posts in a row on here about Autism, but hey, today is World Autism Awareness Day, so how can I not?

The news has told me this week that recent research shows that 1 in 88 children in the U.S. have some form of Autism.  In Utah its one in 44.  Forty four!  

Have you ever looked at a child, yours or another's, and wondered- Could this child possibly be Autistic?  Here are some of the warning signs that a child may have a form of Autism or PDD (Pervasive Developmental Delays) :

• Does not babble or coo by 12 months of age
• Does not gesture (point, wave, grasp, etc.) by 12 months of age
• Does not say single words by 16 months of age
• Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
• Has any loss of any language or social skill at any age.   
• The child cannot explain what he/she wants.  
• The child has poor eye contact.
• The child gets "stuck" on things over and over and can't move on to other things.
• The child seems to prefer to play alone.
• There are other warning signs, too.  You can read more about them here.

The good thing is, there is hope, and there is help, and there is support if your child is diagnosed  with Autism.  It may take you on a bit of a Trip to Antarctica , but it isn't the end.  

And to celebrate, here is the video my older son made of my autistic son at the end of last year.  Some of you have seen it before, but that is okay.  It makes me happy.  Especially with the music.  So Lucas.  Just click on the link under the picture.  Watch it.  He's one amazing kid (and so is my older son, for making this).

My Amazing Son Lucas

Your Reaction to Autism- What Helps, and What Doesn't

My life is crazy busy right now.  Really really super crazy not-one-moment-to-spare busy.  Eat-too-much crap-food-to-stay-awake busy.  Can't-sleep (happens when I am overly stressed) busy.  Busy-with-mostly-good-things busy, but still too busy.  I'm going to do something about this overly-busy-ness soon, really, but right now I'm going to take a few minutes to put the busy-ness aside and write this. 

The whole fam at Soldier Hollow.

 Last night we went on a long-planned outing with the whole family (10 of us these days!) up to go tubing at Soldier Hollow with our Groupons.  Tubing when its 60 degrees outside?  Yup.  Place closes this weekend, and who knew we'd have the warmest and weirdest winter ever this year when we picked this date?  Anyway, it was lots of fun even though we only took one "run" in the sluggish slush and then got rainchecks for next season.  We ate dinner at Dairy Keen in quaint Heber City, which the kids loved for the trains going around the room and we loved for the onion rings.    Everyone was happy.  It was a great night, but a late one.  So, this morning, I decided to let the little boys "sleep in".  Mistake number one.

Because, you see, I broke the routine, and if there is one thing an autistic person doesn't like, its a break in routine. 

Before we left the house my autistic son Lucas (9) was a little more hyper than usual, climbing up and down on the furniture, running back and forth across the room, chest butting his brothers, singing whale songs (Luke's current obsession is whales), refusing to get dressed so I had to dress him like a toddler- basically not a great morning, but not a terrible one. Not that different from hundreds (thousands?) of other mornings at the Sanders house.

Then we took Max (8) to his school to check him in.  Lucas was "on one".  Running through the halls with his sweatshirt hanging off his shoulders (pet peeve of mine), pushing Jacob (5), being loud- literally bouncing off the walls.  Nothing I could do to stop him.  He ran up to the closed glass door of Max's classroom where someone (a visitor?) was up in front teaching the class and threw himself *hard* against the glass with both arms up, then loudly "melted" down the door.  Not only everyone in the class saw it, but all of the other kids who were nearby in the hall area doing reading groups, etc..  Everyone just stopped and stared. I quickly said goodbye to Max, told him to try hard and have a good day and  picked Lucas up, kicking and screaming (remember, he's nine, so picking him is getting harder and harder- what will I do when I can't carry him any more?), and carried him away as he loudly told me "I want a drink" "I don't care about you" and "I'm going to run away".

Lovely fun.  

By the time we got to Lucas' school, though, he was fine.  He happily held my hand as I walked him to his class and he told me "I love you Mommy".  That's the thing with Austism.  Thankfully, at least in my Lucas' case, the hard times don't last.

So here's the deal.  What do you do when you see a kid obviously misbehaving like this?  Do you judge the parent?  Do you think to yourself  "Why doesn't that parent control his/her child?".  Do you "tsk tsk" under your breath?  Do you turn away, awkwardly pretending that you don't see what is going on?  I know I've probably done all of these things at one time or another.   

The truth is, you don't know what is going on with that child and that parent.  Maybe the child has a disability you can't necessarily see, whether its autism or something else.  Maybe (probably) that parent is as embarrassed and dismayed (or more) by the behavior you are seeing as you are.  Maybe that parent is doing everything they can, while trying to manage their lives and their other children.  Maybe they have made great strides with that kid, but right now the kid is just having a moment. 

I recently came across a blog post about this that I really loved.  Here is the link.  Take a minute and read it.

And, next time you see a child melting down, consider what to do.  Consider looking at the parent with compassion, rather than judgement.  Consider offering to help, especially if they have younger children that they are also trying to manage.  Consider saying something like "It must be hard"  rather than "I know just what you are going through.  My little Jimmy (normal kid) once had a tantrum in the grocery store and ........."

I remember the quote I used to hear a lot as a kid.  It went something like this 

"Before you judge a man, walk a mile in his moccasins".

And for those of you who are already doing everything I said, those who support and love us and our kids, no matter how they are acting, THANK YOU.  You don't know how much it means to us. 

Me? Racist? The "Dumb Haole" Years

Seventh grade me with our cat Popoki (means "cat" :)

Not too long ago one of my online students accused me of being a racist bigot when I marked a bunch of her answers wrong on a Civil Rights assignment (they really were wrong).  Me?  Racist?  Really?  I come from a multiracial adoptive family (white, African American, Korean).  I have three Latino sons.  I have a gay brother.  All of this got me thinking back on my experiences and doing a little reflecting.

My experiences in the multicultural world were pretty limited until I was 12 and we moved to Hawaii where my brother in law was to serve a tour of duty for the US Navy.  We thought it would be really cool to live by the ocean, so we rented a little house in Ewa Beach and moved on in.  

The walls were so thin you could see through them.

 My first day at Ilima Intermediate school was a real eye-opener.  I was the only "haole" (white) girl in most of my classes.  I became a target for some of the "local" (Polynesian) girls who would constantly put stuff in my hair, take my things, and do basically whatever else they could think of to "get" me, and then ask me repeatedly "What?  You like beef?" They were not asking if I liked meat.  They were asking if I wanted to fight.  This became a daily occurrence.  I planned my school days to avoid needing a trip to the restroom.  I found a white friend who felt just as scared as I did, and we sat around at lunch complaining about how much we hated it there, and how much we missed our wonderful lives on the mainland.  After a while all of the complaining got really boring. It was stupid and pathetic, and I'm not proud of my seventh grade self for having done it.


After seventh grade we moved closer to Pearl Harbor, where there were more military kids.  My intermediate/high schools were more ethnically balanced. I grew to like living in Hawaii more and more.  Our congregation at church grew so large that it was divided, and my family ended up in the ward with only "local" youth.  I was the only haole once again.  At first I was worried that it would be a repeat of seventh grade.  But it wasn't. I wasn't that same scared little girl. It was awesome.  I learned all of the "dumb haole" jokes, which my local friends told around me, but then ended them with "''cept you".  I had a crush on a boy who was Hawaiian Chinese for ever.  He went to Kamehameha school, a private school that you have to be Hawaiian to go to, and his father was a fire dancer in Waikiki.  Yep, really.  They were so cool.  One time I went to this "secret" restaurant with them where everybody was "local" (no haoles) and they chanted the blessing on the food in Hawaiian.  Super cool.  I wanted to be "local" SO BAD.  

I grew to be so comfortable and familiar with the culture that a few people asked me if maybe I was Maori.  I couldn't be white.  I wanted to lie and say that I was.  After all, I had the hair (see above) and with a bit of a tan well....  I could pass....

Friends from church

 But not really.  I was still a white girl and there was no escaping it.  Even after I had lived in Hawaii for four years and then come back there for a time at BYU Hawaii I was treated as a dumb haole.  People assumed that I didn't understand what they were saying when they talked "pidgin" and used Hawaiian words.  Sometime they would stop and explain things to me, even though I didn't need an explanation.  I had lived there, surrounded by local friends for years.  I had taken Hawaiian history.  I understood the words, ate the foods, knew what they were talking about.  That didn't matter.  


One time I talked to a haole professor (who taught Hawaiian history) at BYU Hawaii about this. He had lived in the islands for decades and was married to a Hawaiian woman.  He not only was an expert on Hawaiian history, but he spoke Hawaiian.  None of this, he said, mattered.  He was still, and forever would be in the eyes of some, a "dumb haole".

I remember well one night when some friends and I were heading back to Laie from Honolulu, where we had been shopping.  There were six of us, four girls and two guys.  The guys were from New Zealand, but looked white.  We missed one of our buses, so we had to do a transfer, late at night, in a fairly remote place.   We were standing there waiting in front of a chain link fence for our bus when two cars of young local guys pulled up in front of us and started calling us names and trying to get the guys we were with to fight.  It was really scary.  The words were flying, and tempers were hot.  A couple of guys got out of their cars and grabbed one of the guys I was with and pinned him against the fence.  Finally he spoke up.  Once he did, one of the local guys recognized that he wasn't just a "dumb haole" from his accent and convinced his friends to back off and leave us alone.  It was a close call, and I was grateful for that accent, and for the guy who recognized it.  Who knows what might have happened otherwise.


When we moved back to the mainland from Hawaii I hated it at first.  It was so boring.  So whitebread.  No culture.  At my high school in Hawaii we had princes and princesses representing all of the different islands for dances.  We had huge dinners at church with the most amazing food and music from everywhere.  I was covered with leis our last Sunday as my friends sang "Aloha Oi" to our family.  Now what was there?  Cowboy culture?  

Yee Haw yuck.  


I still miss the cultural diversity of Hawaii.  I love my neighborhood, but wish it showed a few more colors of the rainbow.  I'm grateful for my years living as a dumb haole.  Pretty eye-opening.  Pretty awesome.

Jobs- A Short History and a New Adventure

I got my first official job when I was 15 and we lived in Hawaii.  We were poor enough that I qualified for a special summer work program. I ended up being assigned to "Waimanu Home for the Mentally Retarded".  Not PC to call it that today, but that was what it was called then.  I had the coolest boss.   His name was Clyde.  We would pile all of these intellectually handicapped adults into a van and take them on adventures.  They would take their clothes off any time, any place.  They must have gotten bulk parmesan cheese at their cafeteria, because the smell of Parmesan will always remind me of that place.  I was the only haole (white) girl who worked there.  One of my best friends worked there too- her name was Toakase Fakava.  She had a huge Afro with a comb stuck in it and was one of 16 children.  Her home had no furniture, just woven mats on the floor.  They were from Tonga, and they were awesome.  That job taught me that I never wanted to work with mentally handicapped people, that it just wasn't "me", that being around "those kind of people" was something I just "wasn't cut out for".  Hmmm.  Maybe Heavenly Father knew differently.....

That job was followed by LOTS of waitressing jobs.  North's Chuckwagon where a pot full of hot coffee exploded all over me, Mr. Steak,  two summers waitressing in what felt like a postcard in Grand Teton National Park at Signal Mountain Lodge , the graveyard shifts in Grand Junction where the yucky old Greek man stuck his tongue in my ear and all the drunks thought they were hilarious, one night as an accidental cocktail waitress (now THAT was a mistake), Utah Seafood Company where I was fired for leaving an odd spoon on the table, but really for not being a part of the hot tub/partying crowd, the Claimjumper up Provo Canyon where I spent a memorable stroke of 12:00am on New Years Eve in my car with a breast pump. The things we do to pay the bills.  I respect waiters/waitresses.  In a busy restaurant they must be incredible multi-taskers and deal with LOTS of stress.  Stress that used to make me have crazy waitressing dreams, where I was "sat" six huge tables at the same time and we were out of everything.  That's stress.

While I was a student at BYU I had a couple of very glamorous jobs.  I worked custodial from 10:00pm-2:00am Monday- Thursday nights.  I got to do exciting things like cleaning bathrooms and vacuuming.  Lots of vacuuming.  I was a favorite target of some of the guys I worked with- always good for a big old jump when they snuck up behind me when I was vacuuming all alone in the middle of the night.  I actually didn't mind that job much.  Made some good friends, and it was better than the Morris Center cafeteria where I wore the ugly nurses uniform and scraped food off lunch trays.

Since graduating I've taught just about every Social Studies subject there is to students in grades 7-12.  I've taught US History, Geography, American Government, Sociology, History of the American West, Careers, Health, Service Learning and World History.  I've also been the Social Studies specialist for my school district.  I love to teach.  The time flies for me, I get to be creative, I am my own boss, I love getting to know my students- I am a teaching nerd.  Its stressful, though, no doubt.  When I first started teaching my waitressing dreams were substituted with teaching dreams.  I've had many.  This is the typical scenario:

"Its the first day of school at an inner city school.  I am completely unprepared to teach my class full of gang members who look up at me menacingly from their chairs. I search for an exit but there isn't one."

Yeah, that one is a classic.

Tomorrow I am starting a new adventure.  I am going to be a teacher-mentor for JHAT, the Jordan History Academy for Teachers.  Its a joint project of Provo, Wasatch, Jordan and Murray districts.   Its part-time, and I basically get to set my own hours, so it should be perfect for my life and my family right now.  Its exciting, and a little scary.  Mostly its scary because for now I will also be continuing to do what I've been doing for the last 12 years (along with some time in the classroom)- teaching online for Utah's Electronic High School, and I'm hoping that I can handle it all.  My duties for EHS are changing, though, and EHS will be dead and gone (courtesy of the Utah Legislature) by the end of this summer, so I just need to last that long.

And, oh yeah, still be a good mom to my kids, and pull off a wedding in three months.

I can do this.  Breathe, Jan.  Breathe.  

But for  now, back to the sewing machine.  Bridesmaids dress number one, here we come!

A Change of Plans

So, I'm alive.  And well.  Really.  Or at least mostly.  Right now I am getting over pneumonia, which isn't fun.  But, aside from hacking up a lung on occasion and not having much energy, I am feeling better,  in lots of ways.

Garrett came home early from his LDS mission a little over two weeks ago.  It seems like longer.  Seems almost like he never left.  Its weird.  The whole time he was gone was so emotional.  Such a roller coaster.  How is he doing today?  Is it a good day?  A bad day?  Will we get "the" phone call?

And then the phone call came.  It was so dramatic, so traumatic at first.  Friends and family were amazingly great.  So supportive.  So loving of us, and of Garrett.  Our bishop went out of his way to make Garrett feel welcome at church, as did so many people.  I was proud of my ward, proud of my Church.  I was proud of Garrett.  Home less than 24 hours and right there at all three meetings at church, and then, suggesting we go to choir together.  Brave kid.  

Now, well, it feels normal.  Was that really only two weeks ago?  We scrambled, and got him right back into school.  His cousin Chase got him a job at the rec center as a building supervisor.  He and his girlfriend Ashlie are close as ever.  He is happy.   Sometimes I get sad, but less and less often.  Its a grieving process.  This isn't what I planned for him.  For us.  For my ideal family.  But its good.  His testimony is intact, stronger than ever, he says.  And I have to believe him.  I want to believe him.  He hasn't given me reason not to believe him.  So I do.  And it gives me comfort.  A lot of comfort.

His future?  Well, no decisions for a while.  And that's a good thing.  Anyway, these aren't my decisions to make, darn it.  Ah, parenting adult children.  Certainly not for wimps.

And I still love my boy.