80 mph - Do It Right the First Time

80 miles per hour... the best part about driving through southern Idaho.  My dream-come-true speed limit; I used to wonder why I would pass cars going so slowly when they didn't have to.  Last Friday I was one of them...
Before my tale of woe, I must first go back to my earlier drive through Idaho - a week ago... I have learned to see great beauty in southern Idaho.  Twenty years ago I thought it was about the most bleak spot I had ever seen, but in my quest to see beauty in all things a miracle has occurred.  I have learned to enjoy the beauty offered through all of that wide open desert, I like the mountains and the way the light plays off them during different times of day, I like the farmland, I like that I once saw a moose walking along the freeway, but mostly I like legally driving 80 mph.  Last week I was driving along enjoying this landscape and I suddenly felt a jolt as I realized I had published an incomplete blog about "incredible women" - no doubt leaving off dozens and dozens of my friends and acquaintances - I left off one of my all time favorite and influential women!  
I hope that Heather is reading this and knowing that I not only remembered her, I thought of her all week.  Heather is the most social person I have ever known... we cannot have a conversation together without her having some sort of connection to almost any other person (from just about any other place) that I might mention.  Hers is truly a magnetic personality.... I was immediately drawn to her and if we are in the same room, I want to be at her elbow; hearing and participating in all of her conversations.  She is positive, upbeat, intelligent, amusing and very kind - also incredibly organized.  I could honestly use a little more time with her so that her influence could rub off on me a bit more.  We used to live close - I had two little boys and she had two little girls - and we would all get together to play as much as we could.  She would get take-out and I would bring peanut butter and jam.  She loves to clean and I love to cook.  We are a good pair - I see her rarely now, but each time I do we pick up right where we left off and I leave a better person.

At least we found some
shade in WalMart parking lot

Now, back to Idaho driving... Last Friday I left Payson, UT to drive to Rexburg, ID and pick up Natalie and her friend, Kandra, from AFY (Adventures for Youth).  We were happily driving along (at 82 mph) when there was a terrible explosion.  We all felt that we had been shot.  Small, black particles were flying off the back of my car and I quickly pulled over.  Our car carrier was untouched and I could not imagine what had made that horrid sound - the children suggested that I check the sunroof.  Sure enough, it had shattered and broken.
Sidenote - this same thing happened a year or two ago when the kids were driving.  Like me, they were in the middle of a freeway with no overpass, trees, etc. - no reason for anything to land and shatter it.  Fortunately for them it only shattered and remained that way for weeks until it was replaced.  I am left to wonder if there is a structural problem with Toyota Sienna sunroofs?
We were now in a bit of a wind tunnel and I drove slowly to the next offramp - Blackfoot, ID - where we found a Walmart.  Planning to buy plastic and duct tape, I was pleased to pull up near a car that was missing a window.  I saw that they had a piece of thin board inside their plastic... so my female ingenuity began to kick in.  We purchased a set of three silicone cutting mats, contact paper and duct tape (the paper and tape were white to match the car).  David and I did a pretty decent job fixing it all up, and we left the parking lot with a giant bandaid on top of our car.

Catching broken glass
with a blanket

We were so grateful that we
had it closed from the interior.

Our goal was Boise (five hours away) and we were confident that there would still be time to swim.  As we drove, however, we realized that our problem was worse than anticipated.  The noise was deafening and like nothing we had ever heard.  We pulled off on several other obscure off ramps to make slight adjustments (such as spreading a blanket under the inner opening of the sunroof to let all of the loose glass spill out).  Even with the loose glass gone it was so loud - with the stereo at full volume we could not hear our audio book.  Finally, I thought back to each step that we had taken in our repair and I remembered that, as we removed the paper-backing from our first sheet of contact paper, the backing had torn and we had used it anyway.  This meant that right in the center, right under the car carrier... we had a small area that would allow air to enter from behind.  We tried to put more duct tape in the area, but our hands just could not fit under the car carrier well enough.  We decided to move our hotel reservation to Twin Falls and drive those last 90 miles at a nice, slow pace so that we could hear ourselves think.
I should mention one other "quick-fix" that we employed.  Grandma had sent the kids with a box of Froot Loops.  Emptying it out, we replaced the contents with a sweatshirt and pillowcase and closed it between the outside contact paper layer and the inside cover.  I have to admit that we stuffed pretzel rolls along the sides... It sounds silly, but it did muffle the wind.
Now that I could think, I realized that, although our repair was a fabulous idea, it would never work well unless we removed the car carrier and properly taped those few inches correctly.  The problem

Who knew Froot Loops
could be good for something?

Several weeks later...
...the "problem" was that I hit the ground running, have had very little time on the computer, and got bored with my little story.  Here are the details...
We stopped at a hotel in Twin Falls... I checked in and, although everyone was anxious to go swimming, we first took off the car carrier, sent David and Kimberly to a nearby store for more duct tape, taped everything securely and hoped for the best.
This is my favorite part of the evening:  We didn't take the car carrier all of the way off, just  nudged it and balanced it on the back of the van.  As we worked with the duct tape, a couple from Portland came and asked if they could please help us.  They had some cord in the car they wanted us to use... they thought that we were using the tape to hold the car carrier on!  We all had a good laugh together. Nice people.
End of story:  We were able to drive the 9 hours home at full speed and with no indication that there was anything wrong.

Not messing around this time!
we covered most of it with
the rest of the white contact
paper - it is still like that!

Life lesson:  Do it right the first time.  I learn this over and over again.  It is usually one of those things where I have to step back, take a deep breath, and do that little extra bit of work which will invariable save me so much in the long run.  It always feels good.  It never feels good to have to go back and start over...
This little adventure of mine takes both sides of the life lesson... I tried to fix it the best way I knew how.  I drove for quite awhile and tried several things before I realized what the real problem was.  I could have pulled over to remove the carrier and do it right, but I didn't want to do this on the side of the freeway, and we only had a little bit of tape left, so I would have had to do it twice... I was prepared to drive slowly to Boise, but made the right choice to change our reservation, let the kids swim, and just have a couple of extra hours to drive the next day...
Nevertheless, it is a good lesson.  Do it right the first time... or at least the very best that you can!

Wonderful Women - The (real) Incredibles

Last night's sleep started too late, ended too early and was ridiculously inconsistent in-between.  I really dislike those kind of nights.
It ended early because of a few drops of rain.  I actually prefer to get up around 6:00, but only when I go to bed on time - so I was trying to sleep in today.  I heard those unforecasted drops of rain and bolted upright - we are having a flagstone patio installed and they have layered gravel, sand and then a small layer of cement which must not get wet - I wasn't sure if I should run out in my pajamas and try to cover the area with a tarp?  When had the rain started?  Would there be more?  I really didn't want to do this and was relieved to hear cars pull up nice and early to work.  They would know what to do with wet cement and I was glad to be awake and have the day ahead of me.
Inconsistent sleep - I am blaming it on cheap pizza.  I really don't eat fast food.  Especially not cheap fast food.  First of all, it is always hard for me to eat out - so many years with such a tight budget... I tend to look at menu prices and calculate how many gallons of milk I could be buying... If I am going to spend the money, I want the food to be worth it.  {Last week, during my "weary" days, we had to get take-out because there wasn't going to be any cooking and cold cereal didn't sound too great.  My two companions weren't exactly mobile....  I was, however, choosy - beef brisket sandwiches from Costco, thin-crust wood-fire-baked pizza with pear and gorgonzola.  Yummy!}  Last night we had a houseful of girls here to watch a movie, so we had a pile of "affordable" pizzas.  These don't tempt me, yet at the end of the evening I broke off some crust and will say that it was quite tasty - but in the middle of the night... ugh! there was that sick feeling telling me that I am just too old for that sort of thing.

Side note - as I type here in the quiet morning there was a flash of lightning and clap of thunder that was deep and long - few things bring me more joy.  I was raised in the Rocky Mountains and LOVE thunder and lightning.  Here in the northwest we get more rain than we know what to do with - but we get thunder/lightning only once or twice a year.  There was some faint thunder earlier - and I am sitting here wishing for more....

Sleep was late in starting for two reasons.  First of all were those wonderful, full-of-life movie watchers.  They did not stay late, but after they left our family was still full-of-life and we had a lot to talk about.  I am keenly aware that Greg will be gone in just two days and Jackie in just a number of weeks; so staying up to talk and laugh - these moments are too precious.  When we did get to bed I began to think - this is always my downfall in the night.  It is hard to shut of those thoughts - especially when they are pleasant.
...Last night I was thinking about women who have influenced my life.  There are so many of them - and their influence is so varied.
Initially I was just contemplating womanhood in general.  Women are incredibly complex, incredibly strong, incredibly incredible.  Equal to men in every way - equal to create a perfect balance.  Equal does not mean the same.  I am sorry for women who try to be men - this throws off that balance and ends up weakening both sexes.  Men with their cut & dry decision making, women with their multidimensional decision making - so different in so many ways.  The world needs it both ways.

My mom and me -
caring for me in every way.

I really like men also (one in particular!!).  My husband, my father, my brother, my father-in-law... this morning I was thinking of how they have had an impact on my life.   When it comes to women, I they also have an "impact" - but the word that fits women even better is "influence".   A woman's ability to influence the lives of so many, and thus impact the world... it is an incredible gift.  (I am liking the word incredible.)
Keeping me awake last night was a list of women who have come in and out of my life - and I began to think of specific roles that they have played.  I am now going to make this list, though it will be incomplete - these are the individuals who popped into my mind.  Their influences are greater than I can say, but I want to just make a short list - for my own records at least:

Lori & I with our new babies.  Her
first (Noah) and my third (Jackie).

HOME:  My mother - it would be ridiculous to try and keep short the influence that a mother has on a daughter - but, in a nutshell, Mom taught me to have faith.  She has a simple but strong faith in our Heavenly Father and showed us the way to have the same.  She is also cheerful, friendly and loving to everyone - it comes naturally to her and I would have to work all of my life to begin to brighten a room like she does.
My sister - even more ridiculous would be to try and describe the role of my sister - she is like an extension of me.  I love and adore her.  Lori is all goodness - when we were young I would resent this.  Think of the Little House on the Prairie books - she was like Mary... the well-behaved, pretty sister full of goodness, while I was like Laura - a bit more adventurous with a tendency to get dirty and find some sort of trouble.  It used to seem that my mom would try out every hideous hair-cut she could think of on my plain brown hair, while Lori was allowed to have straight, beautiful, blond hair.  Haha, but I am not bitter, haha...  Seriously, it was fun when she got old enough to play dolls with me.. and she was young enough to boss around.  I still boss her around for fun - and she laughs, calls me bossy and does whatever she pleases (the nerve!).   I love her deeply.  Lori fills the role of being the woman/friend I rely on whole-heartedly to help, to listen, to advise, to support, to laugh, to always... ALWAYS be there for me!

Jenn and I at Senior Awards Banquet

HIGH SCHOOL:  Jennifer - we went to a small high school where we all interacted with each other  in some way, but Jenn was my always my best friend.  We even vacationed together.  Her greatest influence - learning how to be a good friend and giving love and support.  What a blessing to have such a friend during the high school years (no drama!).  At 17 she had leadership skills that I am still trying to match.
COLLEGE:  Three roommates stand out as some of my all-time most influential women ever!
Stephanie - what a pair we made!  We balanced each other so well - we both contributed to each other in positive ways, while helping each other knock off those rough edges.
Dyla - the epitome of goodness.  Her loving acceptance of others, her tendency to look for the good in a situation - I hope that they wore off on me as much as I wanted them to.

Watching Dyla - probably Thanksgiving
which I usually ate at her house in SLC

Roommates!
Pam, Me, Steph, Dyla

Pam - only Pam knows the depth of our discussions and the help we gave to each other during our freshman year.  One thing in particular - she had a religion professor who challenged them to time their prayers and try to pray for at least 20 minutes each evening.  Since we shared a room I was swept along in her challenge... anyone reading this should try it for a week - I think I should also.  Therein lies a whole new dimension to prayer!
OREGON:  Now I can get myself into trouble - faces swim past me and I know that this list is super-long, but I will have to limit it to a few specific friends.

Me & Nina touring Pittock
Mansion with our girls
(in matching shoes!)

Nina - Ah, Nina - she is a blog entry all by herself.  I am always shocked to hear her say that I have been an influence in her life when... duh... she has influenced me deeply and in such a variety of ways.  Her strengths have lifted me to new heights and her boundless energy and ideas - well, I can only try to keep up... but I am glad that I try because our life here at home has been enriched.  She is truly my sister-friend... we go to a conference with 2,000 other women, yet we are the two that show up in the exact same jacket.  We build our homes over an hour away from each other - with a few years in between - but using the same builder... and we still laugh about the man who did the finish work asking Nina if she has a sister who lives in Washington - same style with same budget considerations.  Then there was the time that we drove in caravan-style with our kids and a few extras to a youth camp in Idaho.  Another young man that we were taking marveled as we stopped to eat at rest areas - "Are you two sisters?" - we had packed essentially the same food for breakfast, snacks, and lunch - and both seemed quite content to unload our kids to eat on the grass beside the gas station.  No way would either of us have spent our money on fast-food.  What a blessing to have a friend like this - our similarities and influences go much deeper, but that is entirely its own topic.
I will have to keep this shorter now -
Teri - Another sister-friend.  Greatest influence on my life?  She showed me what it means to be a fun mom who thoroughly enjoys her children.  Priceless - utterly priceless!!!
Sarah - Two things - I naturally love to bake, and here Sarah leaves me in the dust - but helped me to see how this hobby can be used for good.  Sarah also gives, and gives, and gives - seemingly tireless in her service to others.
Nedra - Another friend who adores her children at a higher level than most - Her youngest (of 7) is the same age as my oldest (of 6) so I used to "sit at her knee" and drink in her wisdom.  Like all of us, she has known some tough times... yet always serving others and brightening their day with her cheerfulness.

Back to roommates - just to
enjoy the 80's hair!

Eileen - How to describe Eileen?  She is the big sister I never had - when I first moved to Oregon I would watch her and wonder how I could develop a countenance that she had so naturally.  She is beautiful inside and out.  Our birthdays are ten years and one week apart - so we get together at least once a year - and I am still left wondering why I have to be so feisty when she is so patient, loving and serene.  I always think... maybe ten years from now I can be more like her... then another ten years pass and she is still so far ahead...
WASHINGTON:
I still live here, so these women are influencing me in real time... I had better refrain from using names:
My sweet friend that I see about once a month is one of those ladies that quietly adores and serves her family - her children are grown up and still close.  I can see the benefit of a mother who takes her job seriously.
How about my business executive/hunting & fishing friend - I have only one of these, and I enjoy her showing me how a woman can be smart, adventurous and still beautiful.
My two dear hispanic friends... the funny and feisty woman who always makes me laugh and the other is a powerhouse of a mother - she and I share many of the same thoughts when it comes to deep matters - so I am always happy to hear her opinions.  More smiles - great women!

BYU Graduation
Me, Karin, Jenn, Kathy

I have a friend here that is one of the most reliable, helpful and unselfish woman I have ever known... she is pack-full of traits I would like to emulate.
Then there is my dear friend who is currently joining me in cancer-weariness.  We wouldn't wish it on one another, but we are glad to have a friend who understands.  She is someone like my mom who lights up any room she enters.  How often have I asked a child if they want to join me in an activity and the kids want to know if so-and-so will be there, because she is just that fun to be with!

Kim and I hiking in southern Utah

There they are - I made myself limit my current influences to just five - but I can hardly type for thinking of this sea of friendly faces swimming before me - I picture walking in to church tomorrow and who I might see - every one of them is a part of  my life.   Then I start to think of the nursing students I loved (Karin, Jenn), or the friends we had when we were young married students (Kim, Laura, Julie)...

Sisters-in-law at Multonomah Falls
Nancy, Me, Brenda

I had better include my extended family!  My mother-in-law is a good woman who gave me the eternal gift of a wonderful man that she raised and trained.  I dearly love my sisters-in-law!  Mark's brothers all did a great job at choosing wives!  They are all talented, fun and thoughtful and I have learned much from watching them over the years.

Another sister-in-law
Kayleen & me in Germany

The names and faces seem endless.  I have taken a day off between starting and completing this blog entry and the topic has hardly left my mind.  I am just intrigued as I ponder the influence we have on one another.  Always watching - learning from successes and mistakes, trying to be like someone, trying to never be like someone else, having my day brightened by a kind word and learning to pay it forward...  I wonder if we are aware of the lives that we touch everyday.
I have SO MUCH to say about this - I will probably say more about it, and then say it again.
I have left my three FAVORITE women for last:  Jackie, Natalie and Kimberly.  I have known them here on Earth for less time than I have known almost every other aforementioned woman - yet they have had the great influence.  They have helped to refine me as a person - as I learn to give and serve.  There is so much I want to teach - so much I want them to know.  As I think of the example I want to be to them, I have to be a better person than I have ever been before.  Yet, with all of my teaching and example-setting... it seems to work out, again and again, that they are the teachers.  I am learning from them every day.  They are better than I ever was at their age.  They are more talented, more intelligent and more spiritual.

I saved the BEST for last!
Jackie, Natalie, Kimberly hiking
at Mt. Adams

This has been a fun exercise - I am wondering how it would be to get a spiral notebook and just start listing names of people I know and a few memories to go along with them.  What about that girl in first grade that laughed at me when I read the word "old" instead of "odd".  It hurt my feelings, yet made me determined to work harder at school and not be laughed at again... Or that same year I had a friend who taught me to cross the monkey-bars.  Monkey-bar-talent was a real boost in self-esteem at that age.  Making that list would take a lifetime.
 I wonder whose lists I would be on?   I hope that their memories of me would be positive.  What if everyone had the goal to be a positive influence for others?  Wouldn't life be pleasant?

Weary, but not whining...

It was a quiet morning at our house a week ago.  The three youngest children were at various youth camps, Mark had gotten up early for a business trip, Greg and Jackie were just one day/one week postop respectively.  I was letting them sleep.  I woke up early with Mark and was about to go and walk, but then I was hit with exhaustion and went back to bed to read my book.  I decided that it would be a good mental health day and I would take it easy.  My mother-in-law called to check on the kids and as we talked she asked about my own well-being.  She said that I sounded weary.  That was it!  That was the word I have needed to explain (even to myself) how I am feeling.  Weary!  I was actually energized to have such an appropriate label.  Free to indulge in a couple days of weariness, I thoroughly enjoyed the time resting and visiting with my post-op-soon-to-leave-for-college children.

[Update - they are both doing well.  Jackie returned to work this week (driving again, hooray) and hopes be able to lose a few restrictions after her appointment this Friday.  Greg has very little pain and is healing ahead of schedule - just not lifting or using that left side of his body too much.]

A few weeks have passed since I went urban-hiking with the our church youth group.  Ten girls and a few adults spent the day hiking almost 13 miles through Portland with the LDS Temple as our end-destination.  Because it is Portland, we spent the majority of our time on jogging trails, many of which wound through beautiful forest parks.  Our steepest ascent was through a cemetery, and they even had to stop traffic to let us get through a construction zone.  

It was a great day!  Obviously I love walking and hiking.  I was so pleased that we didn't hear a single word of complaint from any of the girls.  I was especially pleased over the next few days when I learned of how miserable some of them really were... one young woman was wearing shoes that were too small and took days to recover, Natalie ended up with large blisters on two of her toes (we tended to them at the halfway point and she continued on), another young woman is now undergoing physical therapy for some issues with her hips (not caused by the hike, but the hike was painful)... One of the women now has a black, bruised toenail... our leader is well into her 70's and we did need to slow down those last few miles... Still, no complaining - just pleasant company the whole day.  (Truth be told - perhaps the only whining came from myself, Greg, Natalie and Kimberly - we were still covered with mosquito bites from the hike two days previous!)

The hike was enjoyable, but it was not easy.  My thighs were feeling rather fatigued during that last mile or two.  Everybody was ready to sit down by the time we reached the visitors center.  What a joy it was to me that the most readily available benches sat facing the Christus.    While we sat resting, we listened to a recording of Christ's words from the scriptures, declaring his Divinity, etc.  I was struck by the thought that because of His suffering, we need not suffer.  We were so tired, and here we were resting at the feet of the Master.  I thought of how it would be as we each complete our time here on earth... so tired, so weary - and we find rest with our Savior.

That rest is also available to us while here in our earthly life.  I think that most of us know this - or want to know this, but don't know how to access this gift.  As I walked yesterday I was thinking about it.  It really comes down to having a relationship with the Lord.  How does that happen?  How does any relationship happen?  To have really close friend is something that takes a good deal of effort.  This effort is usually quite enjoyable - spending time together, getting to know each other, sharing thoughts, serving one another, etc.  My best friends are people that I admire and I learn from them.  I am a better person because of trying to be like those friends.  How much effort do I put into my relationship with my Savior?

I wondered as I walked... how many people admire a celebrity or athlete?  Learn all their songs, watch all their movies or games, dress like them, put up posters, listen to interviews, etc?   This type of "relationship"  will almost certainly be one-sided, yet so much effort goes into them.  Entertainment is a nice part of our lives, but what about all those other parts, all those other people, all of the truly important and vital areas of our life?  

Many years ago I attended a one-night class on interior decorating.  They taught us that you can tell what is important to someone by the way that they decorate their home.  I was happy to come home and tell my young children to look around - see all the pictures of themselves - and know that they are important to their parents.  We also have several pictures of Christ, I hope my children have also learned how important He is to their parents.

 I have been so grateful this year that I have a relationship with my Savior.  I wish that I put more effort into it - but whatever I do seems to be reciprocated ten-fold.  Prayer, scripture study, family time and service to others - these are the things that help me draw closer to him.  I also like to find myself in places that I can feel his presence... warm family times, uplifting entertainment, nature - especially away from the crowds, quiet time alone and reverent church services where I can feel those inner stirrings deep in my soul - these are all times that I really know who I am and what is important.   Christ says, "If ye love me, keep my commandments."  Keeping his commandments helps me understand what it means to be like him.  This gives me strength.  I need this strength always - but particularly this past year - needed it through what has seemed a continual string of medical trials.  I am deeply grateful.  I wish so much to be able to share my experiences and lessons learned with fellow sufferers - not just cancer families, but everyone - we all have so many trials, we all know what it is to be weary.  Such a variety of trials, and one grand solution.  He who suffered so that we would not have to.
This week Natalie went into deep cleaning mode (I love that mode).  She sat in her room and went through many of her things.  She brought me a little notebook that she found - the only thing in it was a poem that she had written several years ago (13 yrs old??).  She doesn't remember the circumstance, but we both enjoyed the words that she had penned, and I am sharing it with her permission:

They say I fought in Heaven,

that I stood for truth and right,

They say I strove to prevent

the ignorance of night.

They say I chose to come to Earth,

to struggle, feel and learn.

I came because eternal life

is something you must earn.

They say that trials will come my way,

with all their pain and sorrow.

But I stay firm and steadfast,

valiant until tomorrow.

But tomorrow I must try again,

to live the life God would have me live,

Ever the selfish human being,

to others I must give.

Service is Christ's way,

Kindness is his path.

He is right beside me,

and I know this for a fact.

They say that I am not alone,

that I have family, peers and friends.

But I know that it is in Christ that I will find

the strength to see this journey to the end.

A Final Bone Tumor Wraps up the Season

Greg - 4 yrs old

A final bone tumor - at least I am hoping it is the final tumor for the summer, and in fact, all of 2014.  If I didn't already know about Jackie's parotid gland tumor I would be more hopeful to have a few years "off".

Many of my blog posts have been typed here in the surgical waiting room of OHSU.  Today our surgery is a short one - should take only one hour.  Greg was taken to the OR suite at about 3:45.  Mark and I hurried to eat some dinner so that we could be with him during recovery.  They are planning to send him home tonight.

This bone tumor is not a surprise.  Quite the opposite, it is the first tumor that we ever found on our children.  Just over four years ago we were preparing the family for bed;  we knelt for family prayer and then I reached over to rub Greg's back.  I was shocked to feel a large, hard lump and asked Mark to feel it and tell me what he thought.  We had not yet shared the facts of Li Fraumeni with the children - at that time we had been counseled to be vigilant, but that they didn't need the extra worry.  This lump was worrisome.  

Greg's response was classic - "Well, if you think that is bad... you should see this one!"  He pulled up his pant leg to show us an even larger lump on his right leg, right in the center of his tibia.  

Wow!  We were not quite so hospital-savvy as we are now and didn't quite know what to do.  We were eventually able to see Dr. Hayden.  He had previously removed a tumor from Mark's shoulder when no one else in the area would touch it.  We were so grateful to be in such good hands.

Greg's diagnosis was "osteochondroma" for both tumors - his growth plate was still open and they said that they could remove the lumps after he had finished growing... in the meantime we should come back in every six months.  A few months after this, Greg's tibial tumor seemed to grow and become more painful.  We waited until our six month appointment... and then everything happened very fast. It was an osteosarcoma - a whole new malignant ballgame.   Biopsy, blood work, imaging... suddenly we were in the front of every line.  They finally implanted his chemo port and we just had to wait a week or so for the site to heal - and just like that - we became a chemo/cancer family.

I am sure that I have already recorded these details... but what about the lump on the back? -They have assured us for years that it is, indeed, just a chondroma - but that it would need to removed someday.  The doctors in San Francisco felt that the time had come and Dr. Hayden agreed - so here we are today.  It has not been a problem, but there is always a risk that it could become one.  We have not worried about it, but it is always there at the back of our minds.

It is about the size of an egg and is attached to his left scapula (shoulder blade).  We found out today that it actually wraps around to the front side of the bone as well, so they will need to split one of the muscles in order to get that part - this will slow his recovery a bit, but recovery should actually be relatively easy.  I am counting on it!

These photos are from our fun day at the beach last week.  They were on my camera that I didn't want to go find.  They christened their ship the "Li Fraumeni" - I thought it was kind of a catchy name.  It seemed appropriate.  I am always glad that my kids can talk openly about their condition.  Right now we have Mark's brother and his family visiting us from California.  As they drove up they texted us - just as a head's up - that one of their sons is now a vegetarian.  We got the message just in time - we were making homemade pizza and dedicated one to mushrooms,onions  and artichoke hearts.  As we ate my children joked with one another about the texts that they would send to one another as they come to visit.... "Remember that so-and-so can't be jostled because she just had brain sugery."  "Don't forget that so-and-so is on chemo and will throw up all over everything - just be ready."  "Just wanted to let you know that so-and-so is still adjusting to losing all of her limbs."

 "Oh, and then Kimberly (negative for Li Fraumeni) will come and tell us all stories about her kids and their sports, etc. and we will think, 'that's unusual!'"  They were all laughing, and so were their parents.  It is best that way.

Speaking of unusual - for once there doesn't seem to be anything unusual!  Our surgeon just came and spoke with us - surgery went well and Greg is in recovery.  There was nothing to indicate that this is anything other than a chondroma.  (side note - Jackie had a chordoma [rare and dangerous] and this is a chondroma [no comparison])  He kept us in the conference room for almost 30 minutes discussing Li Fraumeni, screening and our family.  He wanted to make sure that the correct screenings were continuing to happen and to know if we were all coordinated.  I realized that we will need to create a spreadsheet to make sure that everyone is getting their follow-up MRIs, etc.  I lost track awhile ago.   He said that his clinic will eventually see most Li Fraumeni patients because of the osteo- component.  Apparently our family makes up the bulk of their Li-Fraumeni cases - he is the only bone specialist between Seattle and San Francisco that can do these types of surgeries... so we are feeling rare and special.
 Mostly I am feeling that I will be glad to get home and cuddle up on the couch and enjoy knowing that, for the time being,  I have no more surgeries on my calendar!  Let the good times roll...

Happier than Ever

I think that I am perhaps the happiest that I have ever been, and I tend to be quite happy... I realized this as I was driving about town this week.
I am happy.  I am grateful.  I have kind thoughts.
It feels great.
I like it.
Then I saw this post from a friend on Facebook:

During the times where I'm the most peaceful and grateful, I'm afraid to express how I feel for fear of giving offence to those that might take someone else's contentedness as a challenge to their own.

I totally get this - I have often felt that I needed to hide my good feelings.  It seems that the more happy a person is, the more some people resent them and their happiness.  I have been on both ends.  Growing up (getting old) has been helpful for me to learn to rejoice in the rejoicing of others... and thereby having a greater measure of joy in my own life.

Jackie's hospital room had a great view.
It was so strange to not be at OHSU.

I think that I am happier-than-ever now because I am taking the time to consider and recognize my feelings - and I am learning to express them.  Expressing happiness should not bring about unhappiness in others... why does it?  Considering that Good and Evil are real forces in the world... Good - wants us to be happy... Evil - wants us to be miserable.  So which force is it that wants us to downplay our happiness?  Which force wants us to dislike people that are happy?
Jesus Christ is this force of goodness - He wants us to be happy and He shows us the way.  As we follow His way - happiness follows us.  We should not only be grateful, we should express our gratitude it to Him and share it with others... If they are interested in having the same kind of happiness, they will then have an example to follow.  If they are not interested, that is fine, at least they had the choice.  They say that misery loves company.  It seems to be very popular to whine and complain about everything, yet ...ugh!
Pollyanna?  No, I would not say that describes me at all.  I have less-than-positive feelings all the time, I just don't dwell on them.   I am using the wrong term when I say happiness.  I should say JOY to really convey what I am feeling.  I think that emotions are healthy - there is a time to laugh and a time to cry.  I love a good cry.  I have some deep feelings of sadness.  I am currently rather upset by a number of issues... but JOY is also present.  The JOY is deeper than any sadness - especially when this is where I choose to keep my focus.
I am learning this: As I express gratitude and joy, my own words grow and flourish in my heart and my gratitude/joy grow and flourish in my life.
Even as I type, I worry that readers may think I am in some sort of denial, or sugarcoating the truth.  After all, in just the past couple months my children have faced life-threatening cancer and a brain tumor, undergone horrific surgeries, ongoing health challenges, etc.  And I know that this is not the end...
I don't think I sugarcoat anything.  I am functioning in slow motion.  I am mentally fatigued, totally drained and very little gets done around here.  I mourn for bygone carefree days.  I get to watch the "stress weight" increase daily with life experience telling me that I won't lose a pound until this has all calmed down.  I am soooo tired.
When people ask how I am doing, I could say, "Blah!" because that is how it feels... but those blah feelings are overshadowed by happiness and gratitude.  Maybe I am (once again) discovering what happiness is really based on and the multitude of life's gifts to be grateful for.
Last Monday I had one of those really happy days.  I had a list of things I wanted to get done before Jackie's surgery - but at the last minute I decided that it would be better to play together so I took the kids and went to the beach... well, first we left early to get Jackie's blood drawn for some of those "ongoing health challenges" - that appointment is in August but they wanted blood before her body underwent the stress of another surgery.  Then we had a 30 minute pre-op appointment for her, luckily this was via a phone call which we took en route to OHSU where Greg had two morning appointments.

Our sand castle ship.
It is bigger than it looks.

We finally left town, enjoyed ice cream at the Tillamook cheese factory and spent a wonderful day at one our favorite beaches, Cape Lookout.  My Northwest kids were happy that it was only 60 degrees and they had a great time - just like when they were all young.  They built a boat, played frisbee, threw seaweed, etc.   I cuddled up in the sand and slept - (not a normal beach activity for me) - and each time I woke up and looked at the children I would smile and think that I was the happiest and most blessed mother ever!  Then I would go back to sleep.
We made a campfire and roasted hot dogs/sausages for dinner.  Then we roasted a variety of marshmallow/s'more/candy combinations.  My favorite was a marshmallow roasted to golden brown - and then shoving a small Reeses peanut butter cup into it.  Let it melt.  Yum - well, actually kind of yucky and sickly sweet, but - yum.  (Did I say something about stress weight?)

Chicken/Apple Sausage
burned over a fire!!

Greg, Jackie, and I sat by the fire, the other three played in the sand.  We all kept at it just as long as we could - not wanting the day to end.  We were home by 10:00.  I was tired, and yet energized to face Tuesday's surgery.
Speaking of this week's surgery - We asked the doctor how common her condition is - thinking that perhaps no one else is "talking" either.  No, he assured us that her situation just really doesn't happen.  So I am going to blame that crazy tumor.  People have been awesome to give her the privacy that she requested, I think that she is feeling a big neglected but is just fine with it.  Jackie is continuing to amaze me.  After her last painful recovery, this is turning out to be a piece of cake.  Her doctor was shocked today when she told him she has only taken ibuprofen since coming home from the hospital.  Even at the hospital she had only one pain pill.  I am intrigued by the regimen of vitamins, amino acids, herbs and even a strange apparatus with wires/light that releases something in her skin to decrease pain that she has been using this past week.  The nurses in the hospital said that this surgeon does this for his patients and they all have great results.  I would look it up - but I am not that intrigued - far too much effort at this stage.  (Have I mentioned mental fatigue?)  She has activity restrictions, but I think that she will be up and about very soon.

Natalie - Sweet 16.
She didn't want a party - just
to be home and have a
chocolate mud cake.  Yum!

Natalie hit her one month post-op anniversary this week.  She continues to do well.  Last night she was in a pool with her friends to pass off on a swim test for girls camp - apparently she couldn't resist a little rough housing and that, combined with bumping her head this morning, has left her looking swollen tonight.  She hasn't been swollen since her first week home, so I will be watching that closely and hope that it is down by morning.  Isn't it true that most medical situations occur on Friday afternoon?
This blog post goes on and on because I really want to include photos and am too tired to go and get my camera.  Maybe tomorrow.  (Have I mentioned mental fatigue?)  Am I repeating myself?  Did I mention that I have JOY?

Abnormal is Our Normal

It is my job to stay healthy and strong; to monitor everyone else's lumps, bumps, and discomforts; always on the lookout for anything "abnormal".  My most extensive surgery was when I was 19 and had my wisdom teeth removed.  I do not carry the Li Fraumeni gene, but I do fit in with my family - like them, if something is going to happen to me - it will be abnormal.
About five years ago our family was out hiking and I fell - apparently I had broken my tailbone.  A week later I was still not walking well and reluctantly went to see the doctor.  While we waited for X-ray results he drew me a picture of a tailbone and explained that it was lucky we have a tailbone to hit rather than breaking our sacrum, (the flat, triangular bone above the coccyx) because so many muscles, etc. are attached here.   Of course - I had fallen while going downhill on top of a large, fallen tree and the angle had caused all damage right there on the sacrum - three months to heal.  My dermatologist still shakes her head in wonder that the mole she removed "on a hunch" turned out to be melanoma-in-situ; and worse is her reaction to that "thing" she removed from my back "the worst one she has seen in her career" - ...lovely....(she still shudders when she talks about it)...
But - this is getting gross - enough about me -

We hadn't seen this MRI view before.  Greg
saw Dr. Hayden recently and we asked if we
could see an image of his sisters' tumors.
The large white thing attached to her spine
is the chordoma.  Ugh

Today my post centers around Jackie - anything abnormal there??  How about that chordoma?? - the rare cancer that occurs in middle-age men with tumors at either end of the spine - Jackie is a teenage girl and for her it grows right in the center of her body.  Abnormal can also be good - it was operable, she did not lose any vital functioning, and there is (so far) no radiation treatment.
From the day she was born she has been kind, gentle and patient (perhaps excluding some events hovering around age 14 - no one should count those years).  I was always appreciative of this - such a nice addition to our family.  I saw it very clearly when she was about three years old and I took my two little girls to California to care for my mother who had just undergone bypass surgery.  Jackie was so young - yet so attentive.  Her grandma still talks about how Jackie was ever at her side - sitting quietly and gently, just awaiting an opportunity to help.  (Natalie also wanted to be by Grandma, but she climbed all over the place.)

Henoch-Schonlein purpura
This isn't Jackie - it is from the Mayo
Clinic.  We have similar photos
somewhere - with a more blueish
rash - it changed everyday!  Strange!

I was more impressed when she was in second grade.  Our house is 1/2 mile from the bus stop.  One day she and Greg came home and reported that Jackie's legs were hurting - he had carried her home!  That seemed odd - then she woke up covered with large, unsightly bruises - or at least what looked like bruises - covering her legs.  Fortunately, we have a good friend who is a retired pediatrician.  He happened to be at our home and without hesitating gave her the diagnosis of Henoch-Schonlein purpura.  Of course - everyone has heard of that!  The way it turned out - this horrible rash would come and go and look completely different every single day.  Some days one or both of her legs would quit working - other days it was her arms.  We went to the doctor at least once a week for six weeks to draw blood in order to monitor possible kidney damage.  I just remember her - so cute and little - sitting in the family room with both arms propped up on a big pillow to relieve the pain while we spoon fed her (she was unable to even lift her arms on her own).  Six weeks of never knowing what joints were going to give out on her and when.  She missed a lot of school and wasn't able to join in for PE or recess... NEVER a complaint.  Mostly she was proud of her own courage at getting all of that blood drawn!   I watched this little girl accept her condition with such dignity!  I probably had a sense of foreboding that this would not be the last time.
After the Li Fraumeni diagnosis and initial screening last November, there were three main concerns for Jackie.
1. Chordoma - trumps all other concerns.
2. Liver - a spot that we have still not investigated further due to chordoma, phone tag with oncologists (and misplaced MRI), Natalie's brain tumor/recovery, other distractions and mental fatigue.

1st or 2nd grade? - so brave!

3. Parotid gland tumor - this is at the bottom of the list because it appears to be benign for now.  Mark had the same tumor removed a few years ago and his was benign, but the surgery---yuck.  They told us we could wait a bit, and we are waiting.
Jackie also has three other health concerns that we have been watching and dealing with for 3-5 years.  They are rather personal, and out of respect for her privacy, we rarely discuss them.  I will label them A, B, & C.
A - More of a long-term concern.  I worry mostly because of "B" - I think that the combination signals an underlying problem that we have, as yet, been unable to identify.  My hope is that the horrible chordoma had something to do with it.  I cannot help but feel that even if there is no direct, medial correlation - there was certainly plenty of "stress" on her poor body by having that large, nasty growth right in the middle of everything.  Perhaps within the year she can return to a more healthy state.
B - This is strange and has doctors perplexed.  We have been to several specialists but they don't have answers and looking back I see that they were distracted by things like Li Fraumeni or the cyst that was on her thyroid.   Ineffective treatments - Unknown etiology - I am hopeful that having that horrid tumor gone will improve the situation.
C - Well, this one bothers her the most, but it should soon be taken care of.  Soon - like in the next several hours.  Surgery can help to correct the problem, at least for now.  It took us awhile before we had a doctor sit up and pay attention - and when they began to do that ---Yes!  This is very abnormal and needs to be taken care of - we went to a specialist who sent us right away to a surgeon.  That was about 16 months ago.  The surgeon has been wonderful - he is acquainted with Li Fraumeni and was very supportive of us during the testing period - and all of the "waiting for insurance to approve testing" time.  He wanted to wait and hear from our Li Fraumeni specialists at the Huntsman Cancer Institute - and then followed us through the further testing at OHSU.  Huntsman doctors helped us rule out cancer as a cause and they talked to other specialists who suggested another rare and strange syndrome that no one else has heard of.  MRI ruled out that syndrome - so we are once again left without a "reason" - just an abnormality.
We don't need a reason (though I am curious) - we are all just relieved to have surgical treatment prior to Jackie leaving for college in the Fall.  She is very disappointed to be missing her girls camp next week - she was on the youth leadership committee and has had a great time planning and working with the other girls... but our other choice was to wait over a month - this would not give her the six weeks that she needs to recover.
I expect that Jackie's recovery will go very smoothly.  She has a very positive attitude and has relatively good health.  I know that people love Jackie and will want to know how she is doing - I am just asking that all will respect her privacy - no need for details, just her general well-being.  I asked her permission to blog about all of this because I believe so strongly in the power of prayer.  We have been the recipients of the prayers of so many for what seems like an unbroken chain of events since 2014 began.  Well, kind of before that....  We are blessed beyond my comprehension - everything turns out so well, and we have so much happiness.  I would ask that all who read this will remember Jackie (and her tired parents) in their prayers - not just for recovery - but perhaps what we really need to help take care of "A" & "B" is a great combined faith effort; to bring healing or to know what to do to help the process.  Heavenly Father knows what "A" & "B" are - Jackie and I discuss it frequently in prayer.
Surgery will be this afternoon (strange timing - my kids are usually first case, rather nice to have a few hours this morning).  She will need to stay overnight for observation and we should be home tomorrow.

Oh! Mom! Your Poor Face!

Oh, Mom, your poor face!  I heard this many times yesterday... what else would you say to a tired, middle-age woman with 15+ mosquito bites all over her face?
I had sympathy until the children learned that I had been warned... Plenty of people have told me that Indian Heaven Wilderness Area is a haven for mosquitoes in June and July - Just the day before, my beautiful, huntress-friend Michelle had told me one of her experiences, but it was hard to imagine just how bad it could be.  We have hiked there in early September and had a beautiful time - taking photos, picking huckleberries... what a beautiful place.  Yesterday it was straight from a horror movie.

Not quite there - still smiling -

We arrived at the trailhead around 10:00 a.m.  As I opened my car door there was already a welcoming bite - I should've shut the door and headed right back down the mountain.  I did, however, have a mission.  I had most of my children and one of our young women from church - we were here to find campsites for a youth backpack trip in August and were not to be deterred.  We loaded up on sunscreen and bug spray and began our trek.  We had gone about 1/2 mile when I said, "Let's turn around and find a Dairy Queen!"  We were already going crazy - we began to carry pine boughs to swat ourselves - we never quit swishing them, like a horse's tail.  The poor kids dreamed of Dairy Queen for the next 4 hours.

These branches were our best friends.

When we got to Blue Lake, we were supposed to eat, put our feet in the water, enjoy the beautiful setting, and then go further in to find a few other lakes as potential campsites.   As it worked out, we got there and were pleased to see only a few mosquitoes.  We sat down, admired the clear water, pulled out our lunches... and the swarm hit.  That was it - we threw our lunches back into our packs and headed back down the mountain - the other lakes/campsites would have to wait for another time. It was discouraging to know that we would be doubling the number of bites we already had.  

Branches in action - a tail would be nice.

Seven or eight miles of never-ending mosquitoes - I sent the three youngest kids to hurry back to the car so that they could kill all bugs (of course we had cracked the windows).  Greg's "bionic" leg was wearing out fast, and Natalie was beginning to remember that she was only three weeks postop from TWO brain surgeries (she loves to say TWO).  We had to take a slower pace, but NO STOPPING!!   Partway down, Natalie began a maniacal laugh and couldn't stop - that had us all worried for a bit, especially her.  We only saw two other hikers - two ladies on their way up.  Usually we would greet each other and perhaps ask about the hike - instead they looked at us and inquired as to our sanity.  They were already losing it - we all understood each other.

Reason to smile again!!

When we got to the van we dove in as quickly as we could, with all gear still on.  Nothing would entice us to reopen the doors, the dashboard was littered with several mosquito carcasses - it felt like an Alfred Hitchcock film... We were about halfway back to civilization when we saw a river where we could stop and soak our feet.  It seemed important for us to know that we could be outside and have a positive experience.
Greg counted 23 bites on my right upper arm - today I have counted 25 and 27 on the upper arms of a couple children.  With two upper arms, two lower arms, two legs, back and faces all partially devoured, we think that 100 bites each is a conservative estimate.   Ewww don't forget the knuckles - those are painful!

It is a beautiful hike!

For some reason, the boys didn't flare up until the middle of the night.  Today they are full partakers of the mosquito misery.   I kept an ice pack on my face knowing I would need to be in public today - as it turned out, we all went to a matinee and then ran errands... all the time worrying that someone would ask us to leave due to our appearance.  We seriously look like we have a once-erradicated infectious disease.
It will be another long night.
So why didn't I get back in the car when I realized that my friends' warning were correct?  Why not turn around and try to find a Dairy Queen?  Maybe it was because I had been recently reading a talk by Joseph B. Wirthlin called "Never Give Up" - encouraging us to identify our course, our goal and the obstacles that would hinder or divert us from achieving it.  He says things like,  "Perseverance is a positive, active characteristic..." So, I was going to persevere...

Really not a pretty sight.

So then, why did we turn around once we got to the lake rather than persevering?  Why not complete our mission of exploring other lakes and finding campsites?  Well, I have heard another talk that had an impact on me.  It was also about goals - but I remember that it said that sometimes we have to change our goals midway through them because of unforeseen circumstances (medical situations, new opportunities, etc)- and this is ok.  In fact, it usually works out that our new path is better than the one we were on before.
Our new path of cutting our little adventure short was indeed better than the original.  We got back to town, bought some pizza,  showered and settled down to watch a movie or two (with an ice bag on the face).  There's no place like home.
Today - no sympathy for Mom - "How could you take us there after you had been warned?" "We look like freaks!"  "Walk close to me so that our arms touch and no one else can see them" - my arms and legs are as swollen, misshapen, and itchy as their's, but I am smiling.  I am smiling because this will become family folklore - we will tell the story and laugh, and those who were not with us will wish they had been there.
Just because it is hard, doesn't mean that it is bad... unless those mosquitoes were carrying some sort of infectious disease.... hmmm, maybe I shouldn't be smiling...
   ...don't scratch, don't scratch, don't scratch....