Wednesday, December 26, 2012

I saved Christmas Morning Breakfast

Mary-Elizabeth is down for the count. As she said to me with a smile.  "sharing is caring" .  I am hoping she will have a few quiet days and just sleep because with this cold, sleep is the only time you don't feel like crap. I find that I wake after those few days of "three wise trucks ran over me twice" days with no real memory of the event.

I woke yesterday  morning, loaded the dishwasher again, made coffee and then coffee cake. (That was not much of a save) and started breakfast.  The Sierra's were coming and Mary-E loves these mornings.  The kids are ready of great presents.  It is a good time.  Squeals of 6 year olds when the open monster remote control trucks is the best next to 10 year olds finding joy in a million little things and already planning the trip to the American Girl Doll store.

We napped, I did laundry, yes the true Christmas Miracle.  I did more dishes because the Sierra side of the family love the glitz and glitter more then anyone and the good dishes love them.

All and all it was good.  Now off to Eugene.  MaryE will get to her appointments via the many angels in our lives.  I will see what Mom is up to.  I am expecting something is on her mind.  Or we will be Mart Shopping.  K-Mart, WalMart, some of her favorite places. 

As I leave I always feel conflicted.  So many families are deep in the battle but sometimes I need a rest. I think and pray for the kids in ICU (keep fighting Rebbecca).  1 year olds on Steroids (Gayle you can survive this, but it is the worst of them all).  Kids trying to get a hold of maintenance and still fighting the battle in places away from Children's (Alison you are our hero.)  Parents wondering if the cancer is coming back anytime soon since there is no doubt it will (Darlis enjoy your view of Russia from your Alaska Porch).

We can't fix most of it.  We can't even begin to start.  We can save a meal, burn the coffee cake and forget to light the candle but sometimes it is enough to just use the good china and the real silverware. 

Just know every "little save" counts in end.

Sunday, December 23, 2012

Christmas 2012

We have always tried to make Christmas special in simple ways with some spectacular twists.  There is not a lot of money for big presents so the little special gifts are sought out to the ends of the world.  Little things that might be a memory jogger.  "Oh I remember when...."  sort of thing.  Not just the perfunctory sort present for present sake. 

This year I am sick.  Deep down, stay in bed for 22 hours sick.  I feel better today and suspect that will be the trend but yesterday Mary-E and I had a long talk about all the things that needed to be done in order to have the special soup and the stuff for Christmas Breakfast,  She has been a busy busy bee.  She took on my stuff as well as hers.  The only think I have been allowed to do is clean the crabs.

She has done three kinds of cookies, candied pecans and the stock for Crab Bisque.  She has done all the shopping and even came home with stuff for dinner.  Love Love Love Black cod. 

We are well under control.  I did show her what parts of the crab goes away.  I was the prefect person to clean crabs this year because I can't smell anything.  I am hoping I can taste by tomorrow.

Here are some of our relatives.  I found the files on my computer.  Love old pictures.  Wonder what those a 100 years from now will think about our pictures? 

Crab soup needs some attention.


Saturday, December 22, 2012

A Muddy Christmas

So Dad always said that kids don't eat enough dirt.  He was deeply disturbed by the efforts to totally remove germs and dirt from children's world.  He was a true believer in building the immune system by one muddy rock in the mouth at a time. 

Small exposures, little bits.  Sort of like a vaccine.  Give the body something to work against and strut it's stuff by working on building immunity.  He was horrified by purell and anti-bacterial products except when necessary.  Like hospitals and in cases like Mary-Elizabeth's.  He would have had the subtle smirk on his face yesterday during the conference.

So here we are, 11 months post transplant.  Lots of tests, not all of the results but enough that there is some certainty.  Mary-Elizabeth's immune system is not longer her own.  She has 100% Pearl Ann's cells.  She has some loss of lung function, bone density, liver is okay, not great, too much iron still but not enough to bleed, kidneys are on the fence but seem to be holding her own. Over all she is in good shape.

GVH is still a problem.  She should have started to taper from the immunosupresents about 5 months ago and there is no taper in sight.  So they are changing the medication. 

She is going to be taking a medicine made from dirt.  Special dirt.  Dirt from Easter Island.  Did I mention it was dirt? It really is dirt. It does come in a capsule. 

I had been told a long time ago the people that work at places like the Hutch bring back dirt and water from far off lands.  People look at the stuff and then see how it can solve problems. 

So the plan is for her to transition from Tacro to Dirt and see if it will help Pearl Anne be happier and then try to come off the prednisone.  What does that mean, well we aren't done with this yet. There are going to be more time at the clinics but hopefully it will work, if not there are other drugs made from other weird stuff out there.  

The really big news is that barring some sort of other disaster she is out of the deepest part of the woods.  She can fly to clean places (not China).  She can take a train and move away from sick people. She can even take a bus, if she does it during the quiet time of the day. Better to wait until summer on that.  There is a certain amount of care that must be taken while on the immune suppressants but all in all it is great news. 

What a Happy Muddy Christmas for us!!!!

Friday, December 21, 2012

Waiting for Tomorrow and some Answers, maybe.

21st of  December 2011.
We were waiting to see if Mary-E was going to be able to have a transplant.  Was she healthy enough? Did she have any hidden infections? Would it work, would she be one of the 40% that make it through the first year?  All of that.

Well it is Friday the 21st of December 2012.

We are in such a different place.  Same sort of evaluation but not quite as through.  She has had most of the scans under the direction of the SCCA so they will accept the results.  We don't know much yet. 

 Today we meet with the doctors and have the "Conference".  It will tell us what toll this transplant has taken on her.  We know she has lots lung function and liver and kidneys are unhappy.  There is this push pull between given her some sort of estrogen so she does not go through menopause and her clotting issues.  She is still on lovanox and the other night her skin started seeping.  It was freaky.

They called her last night and told her there would be no vaccinations given.   It sent her to bed in a funk. The vaccinations give her more freedom and ability to be around more people.   Her bubble is getting a bit confining. 

In a few hours we will know the plan.  There is always a plan.  The plan never works out but there is then a plan.  Sort of like Congress. 

Wish they had a plan. 

Wednesday, December 19, 2012

You Know You Are In NYC



when there is a stop light at every corner and people Jaywalk any way;
when your cab driver dozes off at every red light;
you ask for a good coffee shop they don't send you to Starbucks (Thanks Esther);
when everyone walks like they are 20 minutes late to a very important appointment;
when a harried dad will let a perfect stranger walk the baby around the shoe store and everyone thinks that it normal;
when every continental breakfast spread has lox and bagels;
when you are sitting in a coffee shop and you move and someone brings you the purse you left behind;
when you are sitting in the NYC reading room and some guy approaches you for directions to hardware store and you can help him out and you realize you must look like a local;
when you drift by a museum and realize there are the letters of Beatrice Potter on display;
when you can stand and gaze upon a vellum copy of the Gutenberg bible and truly be amazed at how far we have come in technology;
when the Rocketts are 20 feet away and you are filled with the wonder at the precision and amazed at how many crystals can be on one outfit;
when you travel around a park in a horse drawn carriage and begin to appreciate how important open space is for every one's soul;
when even the hot dog guy is trying to be helpful to everyone and makes sure your dog is served up just right;
when the kid jumps the turn style and you exchange a smile of understanding;
when a young girl gives you a seat and keeps you on the train when you want to get off;
when you see "Clair" from Ugly Betty and pretend it is a normal thing;
when your town car looks like everyone elses town car;
when you walk down Park Avenue and see the guy with wads of cash and the sunglasses and he pretends it is a normal thing;
when you see every restaurant crowded and full and no one is worried about the wait;
when the cab guy will pull over and wait while you find your gang;
when only the tourists don't have umbrellas;
ever block is a surprise because it is not one giant skyscraper, the small beautiful buildings are still there only adding to the diversity of NYC;
when everyone, says "excuse me"  & "thank-you"
when the best grocery store is in Grand Central Station;
when you realize the "Hudson Bookstores" from the airports all started there on Hudson Street in New York;
when 8 miles is a very very long way away;
when you can totally escape your life for a few days and become part of another living organism and be refreshed.





Tuesday, December 18, 2012

Adventures...In New York City

I was taken on the adventure of a life time.  Remember Queen for a day where you received a new refrigerator.  I was a part of a very new version. 

First Class to and Fro from New York.  They served a very nice Malbec. 

Beautiful room in the Grand Hyatt.  Drinks in the bar.  Good breakfast with a machine that dispensed Torrifazionne Italia coffee, two shots at a time. A wonderful day of strolling up 5th Avenue, with lunch at Sosia, a small restaurant with the best fresh mozzarella I have ever had. Carriage Ride through Central Park.

Quick trip downtown to catch a town car to go to New Jersey for a Rolling Stones, Lady Gaga and Bruce Springsteen concert.   Home for a street dog with the guy from Central Casting. 

Then we did it again but this time we ended up at Radio City Music hall for the Christmas Show.  In the front row!!!!!  Amazing.  A quick walk in the rain down town to a place called O'Casey's.  Reuben Sandwich, Irish Coffees, it was a bit of heaven. 

Then home after a walking adventure down Park Avenue.  A moment with the correspondence of Beatrice Potter in the Morgan Library.  Meeting a friend for coffee at a place that served great Stumptown Espresso.... from Portland no less. 

Loved the picture from the Stone's Concert. Mary-E was excited that I was at a Hockey Stadium.  The Devils have done very well in the Stanley Cup.  It all depends on your point of view. 

Oh for you that are not very smart about cool things like big rock concerts.  This is a picture of the Tongue Pit....  Who knew?

Monday, December 17, 2012

I went to a Fairy Wonderland and returned.

Meb started her year one evaluation without me.

I was in New York City walking down Park Avenue on the way to the Empire State Building.  Just walking.  Looking, seeing and just absorbing the wonder of it all.  Quiet walk.  There was a guy there that had wads and wads of cash and a weird hat and sunglasses on..... 

It was a wonderful adventure.  Tonight I sleep.  Tomorrow we continue the journey of the evaluation.  Life is good and we are expecting it to get better.

Pictures and comments and observations must wait until tomorrow.  I should just say I was tickled to find Torresfasioni coffee in the hotel and Stumptown across the street. 

Friday, December 14, 2012

Big Adventures...

New York City.
Here I come.

Yeah.  Off to see what I can cram into a few days.  Stones and Springstien, Lady Gaga and I are spending some quality time together.  Some time wandering the city and visiting some weird places.

Candles at St.Pats. Top of the Empire State building. Morgan Stanley Children's Hospital to visit a mom with a child in transplant.  Purgatory Press to pick up my 2013 datebook and some frozen hot chocolate.  Some time just wondering and some time on the Subway to just say I did it. 

An art museum if possible, a gander at the Guggenheim, Frank L's last work. And then....  Maybe a book store, the Strand, A street corner for a meal.

There is a bit of melancholy with the leaving of my child here but I figure we will do this trip again.  Maybe next year. 

I really need this and I didn't even know it.  It all fell into place with a minimum of jostling around.  It falls into place.

Thursday, December 13, 2012

Straw are not just for Mangers

It is hard to explain to anyone why we would whine about not having a real Christmas Tree or GVH or house arrest or loosing hair or having to have an NG tube or having to be 30 minutes from the hospital. 

When people try to make it better with comments like: 

Lots of people love their fake trees.  I have had one for years.

She could have GVH of the liver.

or my favorite

She could be dead.

Really folks.  If the only thing a Cancer World parent is complaining about a stupid rule about Christmas Trees be happy for them. 
These are signs of other much more worrisome things.  GVH and long term prednison = need for all the major joints to be replaced. 

30 minute tethers mean that things can go bad so so fast that everyone wants the child close.  In other words, they are not out of the woods, they are not even in the woods.


Wednesday, December 12, 2012

How We are Over Compensating....

It started out when we stole the wreath from our neighbor's sister.  It was not on her door and I was there and then I thought it was a good idea to have it.   



Then Lisa stole her sisters. 
We felt guilty and sent the wreath fairies to find a suitable replacement.
Then Keith and Carol swapped out the Swag for their wreath.  Then I found a little sparkly wreath and took the Swag and gave it to Sharynn.  Then Angie gave me a new one.  Lisa then came a stole the extra one. 

Now things are starting to appear on the wreaths, lights, bows and fancy things.  Things seem to have settled into adding fancy things.  Love the surprises....

Ps. I cann't seem to be able to upload the pictures so that will be later.

Monday, December 10, 2012

Today the Dentist and the Post Office

Before transplant Mary-E went through this long and complicated process.  There were tests done and re-done.  They want these kids to be healthy enough to stand the process.  During that evaluation we found that her body had fully recovered from her first encounter with leukemia. 

We start the process today.  Most of it will be next week but today she visits with a dentist.  He will be assessing the damage done by all of the treatment over the last year.  WE are hoping it is not too bad. 

The body is an amazing thing.  It fights back and repairs itself in many ways.  I am always amazed at how it all works.  We know she does not have GVH in her mouth.  That is more of a blessing then one can imagine.  While my daughter does not talk about what is happening to her she does look online for the sorts of things.  She knows what is out there. 

So today we are off to do something really really difficult.  We are mailing a package at the post office.  Now that is a challenge.

Sunday, December 09, 2012

Sometimes it is the Little things...... Nasogastric intubation

Doesn' t that just sound nasty.  It is.  No matter what they say or call it.  It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.

Essentially they stick a tube through your child's nose into your stomach and feed you that way.  (It is one way that relieves Chef Walter from having to feed the kids.) 

Kids have a very hard time keeping up their eating.  It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese.  The fact is they can't eat a whole lot of the time.  There are so many things that make their stomachs upset.  Chemo, radiation, pre-meds for blood products, mouth sores.  When they are ready to eat while they are on steroids the food they want is white and salty.  Even then they don't like Chef Walter's food.  (Not that he would ask or care or even acknowledge he should be cooking for them.) 

It is a big battle.  The older kids understand.  seldom do you see a teenager with a NG Tube.  They will have none of it.  Mary-E was very very savvy about them.  She would ask what the limit was and would not go below it.  She knew when she had to start eating and she did. 

The little ones are less able to be bribed.  They hurt, or they don't want to eat and no amount of bribery will help.   Remember our favorite little Robin.  Mouth sores=closed mouths.  As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."

So the tubes have to happen.  Like everything in Cancer World it is just one more thing.  It is one more reminder that we are set apart from the rest.  We don't cure our children with good food and good sleep and good stories.  We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain.  We allow people to experiment and poke and prod and cut and paste and do endless things to them.  Why?  because we have no other choice. 

For reasons we don't understand we find ourselves having to let it happen.  It is what stands between ourselves and total utter despair. 

One thing that helps is other parents in Cancer World.  I have been corresponding with a mom in New York.  Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure.  A couple of fellows have crossed her path and not in a good way. 

I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest.  They have been in this trench before with other parents and if they did not understand they would find another area of work. 

I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years.  I worry about them. 

Hoping for less damage in my wake as we travel through Cancer World.

The Next Two Weeks

One Year Follow UP.

Lots and lots of appointments.  Monday starts the process.  It is just a dental appointment. 

The really hectic week will be the 17th.  We have appointments that start at 8:00 am on Monday and end at 3:00 pm on Friday.  Lots of needles are coming at her this week.  She has no line so she has blood draws, anaesthesia and she starts all of her vaccinations again.  All of them.  Except the only one she never had, Chickenpox, because she had Chicken pox. 

So I have a plan regarding the week.  Lots of distractions.  Monday we are going to see King Tut and visit Chihullie, I will just call him Paul. 
Maybe the Carousel and Santa.  All of course while the kids are in school.

For me, I am trying to borrow a copy of Game of Thrones season one.  I am almost through the first book.  Great Book.   A bit more decorating and some Christmas baking.  Planning of the Christmas Eve Crab Bisque so I might be making some bread today to see if I am any good at it any more.  

This is a busy month but for many different reasons.  All of them good.

Friday, December 07, 2012

Today was the First Day

I have heard Mary-E say she might be willing to stretch on her  tether a little bit.  She admitted she was just scared. Every time she even thought about going somewhere GVH came and bit her in the butt.  

My child has never been a "push the envelope" kind of girl.  She is good a hunkering down and holding up until it is darn good an safe to stick her head out.  I am sure that had she been in the Blitz, she would have come out in about 1953. I had been thinking I would just kidnap her and do something wild, like go to Bainbridge Island. 

Tomorrow we are going to go to Lynnwood to a U of W Hockey game.  Love those games.  Should be a fun thing to do.  If we make it to Lynnwood, who knows, maybe Everett. 

She has never been one to jump out into traffic without full and complete evaluation of the situation.  I remember when I tried to get her to play soccer.  I told her she had to go and just watch.  She agreed to do that.  I picked her up from day camp and she immediately wanted to go shopping for cleats and chin guards. 

So we will take this slowly.  A few miles a week, or month.  We will slowly merge into the world again.  Today to start the process, we went to Hardwicks Hardware Store.  It is hard to really describe.  It is wonderland.  If you need it, they have it.


Wednesday, December 05, 2012

We Never Really Tell You Everything

There is this weird dynamic in Cancer World. I think it is sort like the WWII vets. We don't really talk about what is happening.  Oh, report on Facebook and in cheery Christmas letters.  We talk about great acceptance and report on happy cancer.  The media is only interested in happy cancer stories.  King 5 comes to the SCCA floor and tells glowing stories and children are interviewed.  Everyone comments on all the good things.

I remember one piece that Jean Enerson did in Julyish of 2004.  Kelsy, a lovely child of a former co-worker of mine commented on the food.  We all smiled and loved to see the happy bald children, just trying to be children. 

We attended Kelsy's funeral in November of that year.

This is a sobering and awful place.  I think it is worse this time because we have made so many more deep and lasting connections. Sort of like that first year at college.  We lived and ate and cried and laughed and had donuts off the  "Snack Cart" that showed up on the floor every morning at 10:00 am. 

Caringbridge and Facebook have kept everyone in touch.  We hear about more and more children and friends and family members with cancer.  There is a reason we are deeply afraid of cancer.  It is sort of the instinctual fear we have about Saber Tooth Cats.... we know it is bad in a way other things are not.

So many of these wonderful, well loved children do make it out of Cancer World.  They simply do not.  They all start with great hope and optimism.  It is the only thing that keeps you going and the fact space is so limited, there is not a bed to crawl into. It takes a few months for the reality of the situation to come clear.  Around the edges there is fear and complete and utter despair.

You can't let the kids know how afraid you are. You are their compass and you better know where you are headed.  If nothing else, you have to pretend. You hear yourself repeat over and over:  It is going to be alright, it is going to be alright, it is going to be alright.

I say this to Mary-Elizabeth ever single day.  No your cheeks are not bigger.  Your knees are going to be better soon. Your huge, soar, angry stretch marks will not be that color forever. 
 
The hope is that if you say this enough, it will be true. 

Just know that while we never tell you everything, we never let tell ourselves everything.

Saturday, December 01, 2012

Lots of Roads in Cancer World and not all lead to the right place

We all start out with the greatest of hope.  We cling to that hope and fiercely push away any alternative that even takes away the hope of cure.

It takes years to really understand and comprehend the different paths.  We start on only one path.  The path that leads us back to our "normal" life.  Unfortunately so many seem to be diverted or halted or come to the end of the road way too soon.

This has not been a good week for kids with cancer.  Jaxon found out he has no more options.  I should not say Jaxon but his family. He is a smiley, loving wonderful child that was born with Downs.  Sometimes when we talk about what is fair and what is not fair, lets wrap our collective minds around the fact that kids with Downs have a much higher chance of getting leukemia.  Because some how that makes it fair.


Evan was on the floor with us for several months.  He had leukemia and seemed to have a kind that just laughed at chemotherapy.  His family make the trek from Phoenix, to Seattle, trials at the NIH in Maryland, St. Jude's and then home to Phoenix. Their 14 month journey ended when Evan's body said STOP.  I read their Caringbridge page and what a family!  I thought it was kind they never once mentioned the bratty teenager Mary-Elizabeth who always wanted to sign up for 2 hour baths.

Then there is Katie the Great.  She is a lovely child/young lady with osteosarcoma.  She had her tumor attached with chemo and then removed.  Just as they were planning to return to Alaska (so that they could look at Russia from their front porch), she had a scan that brought them back here.  Bone cancer metastasizes to the lungs and hers decided to do so.  So she is back here, and headed to a Trial at the University of Washington with a 20% chance. 

So this has been my week.  I don't mean to make this about me.  These are families in such pain.  I wish I could help in some meaningful way.  Everyone does but there are so many things our of our control. 

I promise I will not be upset about Christmas Trees and bad food and stupid people.  I promise I will clean the basement and not spend another dime on Christmas presents.  I promise I will walk 10,000 steps every day and never eat another piece of bread with butter on it.  I promise I will answer all my mail and listen to all my voice messages and be nice to Republicans.

I will do anything to make cancer go away and leave our children alone!!!!!


 

I Feel Like we are At Spirit Lake.....

We had a house there during our "North Idaho" years.  We would go for the week-end and dad would get away from the phone.  There was not phone or television.  I don't even remember a radio but it had a wood stove that we cooked on and a great dinning room with wooden walls and a plate rail.  It is the dinning room by which I judge all others.

While we went every week-end, I often felt like we missed things back in town (30 miles away.) But when ever we could, mom would pack us up and haul us to the lake.  It was not unusual for us to stay until Monday morning and drive back in time for school.

I missed dances and games and sleepovers and lots of other stuff.  But I remember doing things like making a dress for a formal, reading real books like Atlas Shrugged and Gone with the Wind.  I remember baking dozens of cookies on a wood stove.  I remember lots of snow and leaves and walks to the lake in the summer for swimming.  In retrospect it was a wonderful time.  I was not wise enough to recogize it at the time.

We are at Spirit Lake.  We are missing things.  The Nutcracker, busy shopping and holiday window shopping. The TapRoot Christmas show, Tea at the Queen Mary.  Finding a tree, having everyone over to decorate it. 

But while we are at the lake we do get to do somethings.  Mary-Elizabeth is wraping presents because the internet works so well.  I am beginning my slog through Game of Thrones, 1-5. I am working on my Tuna Noodle Cassorole and thinking about making bread tomorrow. 

It is a quiet time.  A blessed time.  A time I will never forget. A time I hope I appreciate now.  

Thursday, November 29, 2012

Did you ......

Drink enough?
Take you calcium chews?
Take your tacro?
Hold you tacro?
Give yourself a shot?
Get sleep?
Order your meds?
Have enough protein?
Walk the dogs?
Put on cream?
Fill in the blank                   

She is so tired of having the questions asked.
She puts up with it and does not have many slip ups.  Sometimes the drugs are taken when they need to be held. Sometimes the drugs are held when they need to be taken. Sometimes the sample cup is given at the right time or not. 

We are very used to it but it does not make it better.  I know we are supposed to put on a brave face and "just deal".  We are running out of "just deal" energy.  Every now and then we have to re-charge. So we just stop what we are doing and go downtown and go to Pacific Place and we go to dinner and we go to a silly yet wonderful movie.  I skip class and she stops getting ready for her tests.  She found a sweater.  I found a special something for the child that deserves everything and is so trapped in Cancer World.  (No it is not cleaver.) 

It is good. 

Finish your homework?
Clean the house?

Have fun?

Yes we did.

Wednesday, November 28, 2012

Reality...

We spent yesterday morning at the SCCA.

Meb was itching, not looking great.  No real improvement on her GVH.  It was unsaid but we both knew more high doses of prednisone would be the result of the meeting. 

The reality of the unmatched donor is starting to sink in.  I asked if they had different results from different points of mis-match and what to expect.  We didn't get much of an answer but GVH is here for awhile. 

The shocking statement was "This is very early in transplant."  I was dumb struck.  How could this be early, it has been 10 months.  We are about to do the annual follow-up, she has not begun her tacro (or as she said "taco") taper! 

Here we are, we are almost a year out and I thought we would be done.  Boy we are so far from being done. If is time to realize that this is never done.  Not really.  There will be better health in the future.  There will be sushi and real trees and food from trucks but it is here to stay.

So, we must take solis in the fact there will be good times and sick times but there will be TIMES.  Not everyone gets more time.

Okay, that is that.  Time to put more lights on the item that holds up a few ornaments.  A quick trip to the post office. Class tonight.  Final to work on.... Yard to clean up, Christmas cards to get organized.

See no matter what, things are normal, but in a new way.



Tuesday, November 27, 2012

Always Look Up and Cold Nights

Background

My dad started his practice in a little town in North Idaho called Spirit Lake.  It is about 30 miles north of Coeur d'Alene.  We did not have a television but our grandparents did.  We would walk to their house and watch things like Gilligan's Island and the Brady Bunch and Grandma would walk us home, part way.

There were lots of dark cold nights.  Clear dark nights. Cold, icy chilled nights.  But those were the best.  As we walked Grandma would point out different constellations, Orion, Cassiopeia, Big Dipper, Little Dipper, the planets.  It was all so great.  

I learned to always look up.  There was magic in the sky.  I don't know if it was magic because of the great Grandma time or the night sky or the cold.  It was just special. 

It also taught me to look and to see and to ask questions about things I did not understand.  It made me curious about the world around and above me.  It was  a great gift. 

As we deal with this weird time in our lives, that curiosity sometimes becomes stilted. Sometimes you just don't want to know.  You don't want to ask the next question because the answers are not the best. 

We are heading to the cold part of winter.  The morning sky has had a bright star with a smaller one behind it.  I found out it is Venus, big a bright, and Saturn, bigger but much further way.  They are traveling very close together for awhile.  The big one supporting the little one.  Traveling together for awhile. 

Our kids are so much in need of all the support the universe can give.  I love when it hops on board and adds to all the good things we can give them. 

We are so blessed to have so many in our Galaxy.  We never say thank-you enough but we know you are there and shinning and helping to make things better.

Monday, November 26, 2012

We found a Shiny Object

This is our Tree.
We went into the forest of fake and came out with a shiny object.
She even came with her own decorations. Easy Peasy...

This is the "You are still too vulnerable to have a real tree but maybe next year will be okay tree"
For Christmas Dinner we are having ToeFurky

Sunday, November 25, 2012

Some day even WE will think it is a Silly Thing.....

So this search for the right tree, the fake tree, the artificial tree is not going well.  I of course want to put up a pink stick and throw some pots and pans on it and call it Christmas.  Sallyann, my much younger and probably more mature self, is not going for it.  Neither is Mary-Elizabeth. 

Yes, I know that in the scheme of things we are just being whiners.  We should put on our big girl pants and just get over it.  Big deal, we have to have a fake tree because even though the transplant happened 10 months ago, she is still on immunosupresents AND no end in sight and still complications and.......

Yesterday we were out doing somethings and were driving around and everyone was happily setting up the tree lots.  No amount of "re-framing" or "spin" is going to make this sadness go away.  It will take awhile.  We get to be sad and silly sometimes. 

So I shopped all night for a fake tree.  Nothing seemed to float my boat or make its way into my heart.  I think we just have to bite the bullet and go to Costume and Display and buy a tree.  It can be 4 feet and it will go on the little round table. It will be okay from a distance.  It will be fake but my brilliant child pointed out that we could give to another bone marrow family for next year.  That helps.

There are a lot of us out here.  On the edge of life having to be happy about all of this.  We are not happy, we are not grateful, we are not joyful..... all the time.  We are painfully aware of how close to the edge we are and try to muster joy and gratitude because if we didn't we would throw ourselves off the edge of this cliff. 

So we are moving forward, we are "just dealing with it".  We are going to take Pearl Ann (we found out she is the one that really stuck around) to the zoo.  We are going to then find a tree and we are going to be just fine.  We are going to plan a bunch of small events between now and then and life will be good and headed to great.

Maybe our tree will resemble  this turkey.

Saturday, November 24, 2012

Perfection or maybe just Practice

It was perfect.  Perfect table, perfect food, perfect company, perfect flowers, perfect gravy and dressing and pies and Japanese Short Cake and Pumpkin bars.  Perfect wine and sparkling stuff.  It was wonderful.

Several loads of dishes and glassware are done.  The final putting away process happens today and all of it was done in the dishwasher.  (Not the Venice glasses but there are only 4).

I don't think it happened by chance.  It happened with years of practice.  It went sort of like a play. 

Act I
Chop and pre-bake and peel.
Dishes out, serving dishes labeled.
Silver out, polishing done
Jello Surprise completed (orange this year)
Tiny Pumpkins hollowed, flower arranged
Table assembled, all three leaves,
Pick-up 24.84 lb Turkey.  Complain that it is not 25 lbs.

Act II
Figure out timing, 5 hours for turkey, 35 for potatoes, 10 minutes for mashing, 45 minutes for sweet potatoes and yams in yummy brandy sauce, 15 minutes for rolls and 14.72 minutes for gravy
Stuffing completed, sweet potatoes , beans, assembled. Insert Turkey into oven....fade to nap time.

ACT III
15 minutes of chaos.....
Dinner is served.

ACT IV
an hour or so of eating and talking and sitting and enjoying the sheer wonder of it all.
Clear the table enough to have desert. Pumpkin and Pecan Pie....
More talking, dog walking, Jenga, more eating.


ACT V
First load of dishes, Bed

ACT VI

Put it all away.
Mail a package at empty post office.
Buy child her Christmas present (more dishes for next time).


Wednesday, November 21, 2012

Perception and Reality

So as I head to 60, I have the same goal I had as I headed to 30 and 40 and 50.  I have to look like Linda Evans with brown hair. 

In order to accomplish that feat, I need to shed a few of my Cancer World weight.  As we all know this is easier said then done.

For my birthday I bought myself a Fitbit.  It is a small devise that syncs with the computer and my IPhone and records all of my activities.  My stair climbing, my steps, how many calories I have burned, or not.  As any good device of this century it creates reports.

I see myself as a fairly active person.  I am always doing lots of things. Some say I never stay still for too long.  Well I am sorry to say the little nasty thing does not agree.  I do a fair amount of stairs, need to walk more and surprise, surprise, Eat Less... 

They have a scale that reports to the computer.  No way I Hell am I going to have one of those!!

Off to add some butter to something.  It is almost Thanksgiving!

Tuesday, November 20, 2012

NO REAL CHRISTMAS TREE

I have always loved Christmas.  All of it.  I love the season, the lights, the trees, the decorations, the warm feeling of Advent.  I love it. 

I have had a Christmas Tree, a real Christmas Tree every year of my life.  I have collected ornaments since I was in high school, I have decorated, crafted, matched and mismatched, I have created wonderlands of Christmas in my house.

I have cooked big dinners, small groups for multiple evenings of dinners.  As my friend named us the House of Big Meat, it is always a celebration.

If I had to choose one thing, one moment of Christmas and name it my favorite time, besides the dark church on Christmas Eve, it would be the dark house during the season when the tree is up and lit.  I don't even need many ornaments up, I need to fix my coffee, go to the living room and just sit.
Those quiet moments of solitude before all the "other stuff' gets in the way.  I love those times. 

I love to go find the tree.  Where will it come from? Will there be a different kind this year?  Will it look wonderful?  Will it have the right kind of branches?  Will it be fresh and last the season? Will it be quirky?  Will it smell wonderful? 

It is for me.  The tree is enjoyed by all but it is for me.  So this year, I don't get a tree.  We don't get a tree.  I totally understand the fear of fungus is real and present and not to be trifled with in any way.  I know it.  I know I should be happy that we get to have a Christmas and are not in the hospital or worse.  I know I should be grateful for all my blessings, I know, I know, I know, but it makes me sad.  It is a sign that we are not "OUT OF THE WOODS"  yet. 

Okay, I will figure it out.  I will make it good.  I will rent a tree or make a tree or find a branch that needs a home.  It will be fine.

Monday, November 19, 2012

What really makes us who we are.....


 The last few days have been a scurry of activity. Everyone made up for last years birthday that was spent in the hospital. I have been wined and dined and entertained for a week.  I am exhausted from all the fun.  So many great friends and time. The best is time. Time spend quietly in a small cozy restaurant with warm soup is wonderful and magical.  A cup of coffee, a small moment. Time is the best gift of all.


Birthdays are a time of reflection. A time to look back on what has happened in your life and then to evaluate just what you have accomplished and what else needs to be done.  Books to be read, trees to plant, places to visit. Not a bucket list, that sounds too final.  Just a moment to reflect on what can be done in a given amount of time. But then after reading War and Peace, I figure I can do anything.

I have been in Cancer World way too long and get angry about that on occasion.  While at Wicked this week-end, in perfect seats, Row O, I heard this song.  It made me think about how many special people have entered my life during our time in our Cancer World.  My life would have been less had I not been here.

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we areTo those who help us most to grow
If we let them.


The other gift from our time in our sort of OZ is learning to accept help and finding out what loving and wonderful friends I have. 

I am off the see the Wizard....









Friday, November 16, 2012

Today



“What day is it,?” asked Pooh.
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.”
 
I agree with Pooh.  Spending time with my daughter on my birthday is the best gift in the world. 
 
 

Thursday, November 15, 2012

Cancer World Moms and a few dads...

We are the head of the team.  We need to be "large and in charge" because the team changes.  The baby docs,(interns, residents, medical students) come and go.  The Fellows are there for three years and if you are in Relapse World you don't even get one.  The docs rotate through.  Inpatient, outpatient. 

Your most consistent provider is your  nurse practitioner.  Karyn has been ours and we lost her when we went to Transplant. 

The long and the short of it is, The Moms are the ones that are always there.  We carry all the knowledge, the history, the deep memories of the side effects, the mix-ups and the things that work. To be fair, there are some dads but not many. 

We Moms have a predictable journey. After a few months of being in Cancer World you emerge out of your fog and begin to look around. When you do, the newbies come into focus.  As a Mom, you begin to take care of them too.  You take a Mom or two under your wing and help them cope, understand, figure out what is happening.  You let them complain and cry and more importantly, you let them know they have joined a very very exclusive, strong and much under valued group.  A group that only lets in 6000 or so  new members a year. It is a very small secret society.


At some point you become a Mom Guide.  You are sort of like the old crone of the village that dispenses wisdom because of your vast storage of knowledge.  You meet someone, you hear them speak, they find you are further on the Cancer Journey and you have become the one person in the universe that can help.  The problem comes when your child has not had the most successful journey. You hold back part of your wisdom because the newbies can't cope with all of your story.

Part of the early coping mechanism is denial.  As the doctors spew facts, and statistics and endless medical jibber jabber, you only hear the good stuff.  85% survival, most don't have recurring cancers......... 

You don't hear the "other stuff".  The heart complications, secondary cancers, dead thyroids, brain matter not forming, kidney damage, infertility.  You just can't hear it.  You have no choice.  You have to let them dump chemicals into your child and radiate them. 

So yesterday Darlis Elliot met someone.  The parent's were so relieved to meet a real person that had been through the same thing.  Same cancer, same age, same place.  Only the Elliotts have had to face the other part of the equation, the 15% .  Katie's cancer has gone from her bone to her lungs.  She is off on the world of "Studies" and more treatment and more.... who knows. 

Darlis had a moment of panic yesterday.  She was afraid to get too close because of what has happened to Katie. But Darlis will help this family and will give endless wisdom and guidance. She is worried she does not have the best story to tell them. It is a hard place to be.  You want to help, you can help, you don't have the best outcome to share.  It is an interesting dance, especially with the newly diagnosed. 

But, Darlis is an experienced Cancer Mom.  She will protect the new family, she will impart knowledge in the best sort of way. She will be able to make the new family's journey easier.  She will share the right amount of information when the new family is ready. She will find that helping them will help her be distracted from her own difficult journey.

We just have to keep moving along.....

Tuesday, November 13, 2012

Coming to A Realization and Coming To Terms.

I have been a in bit of a fog recently.  After hearing some good things for once, I decided I needed to make a pot of Sauerkraut Soup.  No now one else thinks it is a good idea but I went to the store and gathered all the ingredients. 

Kielbasa, potatoes, tomatoes, carrots, onions, garlic and sauerkraut. 

As I was gathering these key ingredients, I began to notice something in the grocery store.  Stuffing Mix, large stacks of boxed free range, shade grown, free trade, gluten free, caffeine free, chicken broth, Brussel sprout stalks, turkeys, canned pumpkin and.... oh dear.  Why are their little Pilgrims everywhere?  Halloween just happened!!!

I pulled a Karl Rove and convinced myself it was not true.  Denial is always the first step. 
I then panicked a bit.  I called Better Meats and they were closed.  No turkey ordered.  The table is not in order, the toasting flutes have not been gathered.  It is just happening too fast!!!

I came home, checked my calendar and just had to face up to it.  I have only a week to figure out dinner.  It is not as easy as it seems.

A. What kind of pie?
B. What kind of jello surprise?
C. Sweet potatoes and Yams?
D. Do we have time to order Ezells Rolls?
E. Anything special in the dressing?
F. Garlic Mashed or do we add a few parsnips or maybe some shredded carrots?  Should we use purple carrots?

Oh, yes, I have done this dinner dozens of time, I know the recipes, I always have the timing down.  It is easy.  That is why it is so much fun.

a. Always Pumpkin and something else
b. It is called Jello Surprise so why would I know now.
c. Yes.
d. I always give this job to someone else so I never
e. It will have some apricots this year because I have lots of them and I already the free range chicken broth
f. People are afraid of parsnips so I will do regular and then do some parsnips and add to some.

See it takes a bit of time.  We need to have a moment or a month to figure out how things are and what we are going to do.  It is hard sometimes but then lots of things are hard. 

What is not hard, is cooking a turkey, having friends over and enjoying a day we can spend with friends.

We have so much to be thankful for this year.  Some might wonder how we can say that but all I can say, is we are having Thanksgiving and Mary-Elizabeth is here to set the table. 

Now I do have a beef with the Democrats.  During the Roosevelt administration the Democrats changed Thanksgiving from November 25th to every 4th Thursday.  I would really like to have Republican Thanksgiving this year!  I am sure several will agree.








Monday, November 12, 2012

Sometimes the Dragon Wins and Sometimes he does noT!t

During my lawyer days I found a version of this on the wall in a small work place for the weary court house lawyers.


 
 
I am pleased to announce that no Dragon is winning in this household. 
 
We met with Dr. Tracolimus today and went over all the numbers.  I had been pretty upset the last time we met.  I was confused and angry and frustrated that we had transformed from happy kidney land to be careful because if you eat one too many pieces of sushi, we will be doomed for eternity to dialysis and eventually kidney transplant.  I have had quite enough transplants thank-you very much.
 
They had has some serious discussions and her improving creatine level has led them to back off from Stage three Chronic Kidney Disease.  At worst it would be 2, and could be less if she keeps presenting good numbers. 
 
Big sigh.  I have so afraid if we could go from nothing to 3 in a month, we could be looking for a Kidney sooner rather then never
 
Side effects of one transplant is enough.  Off to buy sauerkraut to make soup.  I will let you know if it is good........

Friday, November 09, 2012

It seem different this time.

There is this little voice in my head that tells me to organize 1500 blog posts and write a book. Maybe a Dummies Guide to Cancer World Survival. In going through Cancer part one, I am realizing how different Relapse World is from the first time around. There are two books here.

Part One is an easier book because in most of the cases there is an end in sight.  While no one believes it when they are starting Cancer World does become more manageable.  You learn that the schedule is a lie.  You can't count on counts. The side effects can be managed.  Essentially you learn to cope.  You learn to go with the flow, accept help and you let other people fold your laundry.  You can see the end and can sort of power through. 

Now there are plenty of bumps in the road.  Weird infections, blood clots that require constant attention, hair coming and going, different color chemotherapy, long lasting effects from all of this treatment.  It is hard.  It is excruciating.  Lots of people just fall apart.  But there is an end.  Once the panic subsides and you are able to look around it does not take long to get to "We have the good kind of cancer." It is doable.

Relapse World is ugly and treatment and the emotional roller coaster is so different.  First there are no answers that can be given.  It is much more terrifying because when it didn't work the first time, the doctors are more afraid the second time.   They pretend they are not but they are much more nervous.  There is no clear and certain protocol. No straight line.  It is more like the Harry Potter Maze.  Lots of dangers and low cure rates. They know that we can exit the maze unexpectedly and many have.

It is more frightening because they have to take out the big guns.  The dark blue chemo's, the big radiation machines, the big double lumen Hickman lines.  Nothing is held back.  It becomes very clear that there will be no passes, no skipping of chemo, no withholding steroids for an impending dance.  It is serious and terrifying and mindbogglingly.

But again, like last time, you settle into the ride and close your eyes more, retreat to watch 650 episodes of Dark Shadows.  You limit your contact with the outside world.  No big plans for trips are made, no end of treatment party is planned.  You begin to wonder if you will ever trust again. You get angry faster and more often.  You start to want to kill people who say things like "What do you do all day?"  "Why does Mary-Elizabeth still have to to go the hospital?" "Isn't it over yet?"  Its never going to be over!!!!!

I guess we are sort of like the Upper Classmen in a very small and highly competitive and exclusive school.  Our job is to be leaders and help the younger classmates through the process.  We share the secrets of how to survive in the hospital, and what much of the jargon means. We help the other parents by listening to them and assuring them they are not the first to be horrified by _______________________.  Fill in the blank.

As the Upper Classmen we are good sounding boards but are reluctant to share our stories too freely.  We remember the blood curdling screams that when off in our heads the first time we heard the word RELAPSE.  We know better then to let the new people know our story. 

The biggest difference now is the size of the group of relapse parents.  It is a much much smaller clan. Very reserved, very scared and have good reason to be. They don't here numbers like 85%, 90%.  They hear 40%, 10%, or even worse....  Plan a trip to Disneyland... and not in the happy Make-A-Wish sort of way. 

There is also the death thing.  I only remember the loss of two kids during our first round. Both relapsed before they were done with the first part of treatment and both died.  This time is different. Kids are dying before they even get to transplant. When one dies, we all have to work very hard to regain our balance.  Each time it happens it takes longer and longer to straighten up again.

The one thing that is not different is that we still are supportive of each other.  We still reach out, we still go the extra mile. We still have good things to share and lots of support and love to give each other.  We all live with the knowledge that we are fighting the most important battle of our lives. 

I still think we need to commit to cure this thing and learn to prevent it.