I've Been Asked Why I Stopped Writing

The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place.  It just isn't.  No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.   

I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year.  Does my writing help anyone?  Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey?  Cancer World is simply a grind.  An endless plodding grind. 

 One with an ambiguous ending. 

People want happy endings, evidence of great triumph over adversity and life-affirming stories.  The grim reality of Cancer World is there are no happy endings.  Many many children die long horrible deaths.  Some receive reprieves and believe they are done.  Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo."  No Hallmark card fits any of these situations. Very few children ever hear the words "Cure."  They are told they continue to be "NED." 

                        No
                        Evidence of
                        Disease

Many are told they are in "Remission"  This is not a word that warms the cockles of our hearts. Simply a reprieve.  Some are short, some are endless.  We all live with the fact next word we will hear is "Relapse or Recurrence."  We know cancer comes back with a vengeance.  There is no way out.  We are here for perpetuity. 

Mary-Elizabeth is currently doing great.  She seems to have settled into her little universe of side-effects.  She handles the GVHD.  She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA.  She is hyper aware of any changes in her body.  A bump, a sneeze, a strange feeling of concern.  She addresses each of them.  I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting. 

Others have not been so lucky.  We have met so many people over the years and know many many families that have come to the end of the road.  They simply take their children home to die.  

These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post.  They put their best face forward and try to have something happy to say.  

They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming.  The sand is rapidly escaping the hourglass, and there is no way to stop gravity.  The entire process is just overwhelming and excruciating. 

Time does not heal the wound of losing a child.  The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever.  Life does not get easier, nor does the pain lessen.  

The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know.  We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.

I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months.  There had been so many losses of such lovely children.  Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.  

 I don't keep count anymore.  I cringe every time someone celebrates the last dose of Chemo or the end of treatment.  I just hold my breath for them.  I know too much. 

We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo.  What the Hell!?   She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much.  I think we are all just waiting.

 I certainly am.  

I think we see the end of the Tunnel

I can see. 

I can hear it,

 I can taste it, 

I can feel it. 

The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 

The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology

2.    Big appointments with SCCA

3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and

Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready

y.

                                                                                                                                                              

Great Crow Cacophony

The murder of crows and their cacophony woke up everyone.  Something was happening and we were not paying attention. 

I am sure there are lots of parents that feel like this when they are trying to find out what is wrong with their child.  Everyone has a diagnosis story.  

Ours was swollen optic nerves, two months of scans and exams. Finally the sneaky little blasts flooded ME's blood stream and we were off to the races.  (A race we still run and have had to do again.)

Bloody nose, cough, weird bruises, pain in the legs, lethargy, pain in the stomach.  Often there are numerous trips to the doctor, the emergency room.  

Then when they figure it out it is full bore press.  There is no time to even breath. Life Flights, long admissions, surgeries to place ports and piccs and Hickmans. There are consultations and scans and blood given and taken away.  Huge hubbub..  More noise.  

The noise never ends. Everything beeps. Even things that were formerly silent. Thermometers, IV pumps, phone's, call buttons, beepers, fire alarms.  Everything is trying to get your attention.  It is sort of like "signage overload".  When faced with too much information, we all just shut down. 

I still wake to the pump alarm.  It happens mostly when I am in that weird in between place of kind-a-sleeping.  My mind had stored all the sounds for use at another time.  Sort of like a squirrel and nuts.  

This morning the Crows were alarmed.  They are not quiet about their alarm. Everyone in the neighborhood heard them.  That is what they wanted.  They wanted to be heard and to be acknowledged.  I am sure they are like us, the Cancer Moms and Dads.  We are sitting in a corner of your world and we are screaming as loud as we can and no one truly understands the noise.  We have a doctor writing articles about how cancer is very rare and very curable. We have a family that wrote a book wishing their children had cancer and not autism. 

Hey, we are all just making lots of noise over here and we need some attention.  Something is wrong. Very Very Wrong.  We are a small group, a rare group, a very dissonant group. We have learned we have to be because what we are doing, is something lots of people don't understand. 

We understand but please know we will keep up the noise for as long as it takes.  It is a good song, a necessary harangue. 

Slowly Sneaking Out and About

Lionel Richie, The Seattle Symphony, Shrek the Musical (Blanchett's annual Musical).  Oh my this is feeling great and exciting and a bit nerve racking. 

Little by little we take baby steps returning to the world that has gone on without us.  

Pearl Ann ( Meb's Cord Blood Donor) has been without a dose or two of her medicines that keep her under wraps.  We are being quiet about it. Hoping she does not notice and get too excited about the new freedom.  She is still heavily supervised but like all toddlers we are trying to give her a little bit of freedom.

So Far So Good.... Now we hope the musical does not scare her. 

Unpublished thoughts from the Beginning of Trip, thought appropriate as we are almost done with the journeyu

We woke to Sunshine this morning.  Billings. We have traveled less than a 1000 miles but then that is okay. We are on a road trip. A Sally and Mary-Elizabeth Road Trip.  So we don't get very far very fast sometimes.  Sometimes it is necessary to leave the room in Drummond Montana at 11:45 am. 

We then need to abandon the plan and head off to places unknown.  Only rule.  Must be headed South or East.  No back tracking.

How can you not go to Highway 1 and stop at Hall and Philipsberg and see the worlds best stocked candy store.  Cool, cool old town.  I want to move there.  Of course every town we go to “I want to move here” comes out of my mouth. Small is better.  While not practical it feels,  better.  It is so much better. 

Back on the road but not until we have taken a couple of good pictures and stopped at the Sapphire gallery.  Who knew they grew in Montana.  Then a moment on the really high scary pass with the cool canyons and cool rocks and then a drive through Anaconda…

Then time for some serious driving.  No She wouldn't let me stop at the Ghost Town or the head waters of the Missouri River.  No we could not visit Three Forks State park or go find out why they named Greycliffs , Grey Cliffs.  No we could not go ask to drive through the private property on Crazy Mountain and see how close we could come to the base. (Crazy Mountains, just sitting there on the plain.  Looks like they were plucked up from the Sawtooth range and plopped down.

We drove, we saw the runners for the Special Olympics,  (Event starting in Billings next week-end.)  We were almost smashed by very big, did I mention big pick-up trucks… Frozen lakes, hail, visible snowing in not so high mountains.  Hugh valley vistas, lots of bovines and sheeps…  lots of critters.  There is a great lack of Mooses… I want to see some Mooses.  Not lots of birds, deer crossing and one sheep warning signs.   No sign for the Clinton Montana Testicle Festival. 

Lots of really big trains going and coming and going.  Rail crossings are to be respected.  No messing with them.  There are trains here that could crush your car like an aluminum can.  

So today, we are headed to real sights.  A search for answers.  We will peer into the past and wonder.  Why did Clark carve his name?  Big Horn. Why was Custer so arrogant?  Why do the Praire dogs looks cute and can we have one?  Where did that hunk of rock come from (Devils Tower) and of course it is sacred! 

Odd and only funny at 1:30 am.

            Perkins, that is the Dennys for here.

            Oh, I think that is a USO.

            Clarkfork river…. We have crossed it only 16 times.

            How do those black bovines birth those white babies.

?

Mother's Day in Wyoming and South Dakota

Highly recommended.

Starts with a visit to ShopKo... A favorite of the Lanham Girls. This is a Eugene, Coeur d'Alene, Newcastle SD sort to place.  It contains Payless and some frozen flowers out side in a nice covered garden spot.  (34 degrees and snow when we left Newcastle.)

Head up some crazy construction filled road to the Jewel Cave.  They think it is 5000 miles of cave but only have explored 169 miles.  They find 5 or so miles of cave a year.  We opted for the one hour 30 minute version. 765 stair steps, up, down, up up, down up ....

MEB was so happy to be in the deep dark place.  We always to a cave on our trips.  Shoshone Ice Cave was the first.  This cave was amazing.  Lots of Calcite Crystal covered walls, slimy rocks and lots of dripping.  Really was an experience. 

Headed to Crazy Horse.  Meb was not too disappointed when it was covered in a blizzard. We had had a great meal of Buffalo and donuts.  Yes donuts.  They are very popular.  Wall Drug  a donut and cup of coffee 5 cents. 

We went to Mt Rushmore.  It remains an amazing place.  I woke up to them one morning while eating my cereal in a little box.  The sun was just hitting their faces.  I was 5 and they were huge.  I visited again in the late 80's and they had shrunk in size.  This time they had grown.  My camping place is gone and a huge parking complex has been built but they remain amazing in so many ways. 

Wall became our destination for the night.  A road trip with less than 200 miles but then we had been deep in the earth, saw wild turkeys, dear and buffalo and a spare antelope. 

It seemed no fun to return to the freeway.  Highway 14, 44, 74, 385 and all the other little roads.  Mostly paved, always a driving challenge and so interesting are behind us. We continue to marvel at what is the vastness of this country.  To have left St. Louis and traveled to the West Coast with no map and no clue what lay ahead was a feat of amazing courage.  To walk across with a wagon train and a cow, some chickens and pregnant makes you think about what courage it takes to make big changes in your life. 

Meb is amazed every day.  She is filled with wonder and questions and insight.  More times than I can count, she has gazed in wonder at a pile of rock and said "Mom I am so glad we did this."

We are making another layer of calcite crystals over what has been barren rock that has been the last 2.5 years of our live.  These new shiny Crystals are our new reality, This is the present, finally covered in shiny new future. 

Sunning Turtles

Reminded me it was important to take a few moments, when the sun arrives.  

I am sure 93% of Seattle is out soaking up some much needed vitamin D.  I let myself spend a bit of time in the sun. 

Connections

As I look back on my life, I can pinpoint times when very significant connections were formed.  These were times of change, transitions, endings, beginnings.  These were times when groups of people were beginning new journeys together.  While we pick up people during our lives there are just those special times: Freshman year of college, first year of the first really job, graduate school,  the like. 

I realize being a bonified member of Cancer World has done the same thing.  While we are all in the same boat much of the time we all have different journeys.  Some good, some not so good.  We often don't know last names or diagnosis or prognosis but we know the pain that binds us together.  We know the fear and the terror and the anxiety  of waiting for scans or counts or waiting for the match notification.  The unique pain of watching the chemo or the blood or the weird green platelets drip into your child's heart via a port or a Hickman.

We all live in terror of Relapse, Re-occurrence, Secondary Cancer or late stage side-effects.  We are caught in the same web avoiding the middle. We fight against it but we are here together, to support, cry, pray, plead, listen, what ever is needed at that moment, for the person entering the web for the first time or the last.  We are here together.  

Some think this is a godly plan of further shaping us and for growth and for......  I just don't believe any God, Any GOD would ever make a child suffer to help a parent learn to be more patient or kind or understanding or more giving.  I believe our children are in this web with us just because.  Luck of the draw, or should I say bad luck.  My God does not make little children suffer to make a point. 

I do believe once here, our needs are taken care of in amazing ways.  The comfort of others comes forward in miraculous haste.  The right doctors, the right nurses, the right donor, the right meal, the right phone call the right person to share their experiences with you.  That is where God is, with the kindness and love and support.  Faith requires you to rest back and let it happen and accept what comes your way.  No requirement to be stoic about it.  No requirement to be happy or accepting.  There are huge fights and battles and challenges and our involvement is required and needed.  There is deep disappointment and loss and grief and agony and helplessness.  It all is often just too much.  There are times you really don't think you can stand one more bit of bad news.  One more moment of sadness.  But reality is you can. It passes, it subsides, it fades a bit. 

It was suggested I break away from those at Children's.  Stay away from the despair.  I might be on the outer edges of the web again but I know I can return to the downward spiral and head to the middle of the web in a blink.  No more could I leave those I have such powerful connections to then fly of my own power. 

Spider Web is the strongest connector in the world outside of the bonds between Cancer Mom's.

Food Garden at Seattle Children's Hospital?

Oh, I will be taking pictures and asking questions today. 

I have decided I have two passions in my life.  One is increasing awareness of the need for bone marrow and double cord blood donation and the other is making the food they feed the cancer kids better.

I am going to visit with the new head of dietary today.  Pictures later....

Greed.... Level Four: We just want to be back to Norma

Virgil:

 saw multitudes
to every side of me; their howls were loud
while, wheeling weights, they used their chests to push.
They struck against each other; at that point,
each turned around and, wheeling back those weights,
cried out: Why do you hoard? Why do you squander?' "


 We live and die by protocols.  Long pages of stuff that determine what is next.  Dates of treatment, types of treatment, rules about when there will be treatment.  It is pretty amazing how difficult and complicated it can be for all involved.  More then once I got us prepared for a hospital stay and then the "counts" were not right.  Or we just went in for a blood draw and ended up staying for a week or two.

Oh Cancer parents are greedy and we hoard and squander like the best of them.  We pursue health and any small moment of laughter.  But most of all we want to be normal.  We want to look at a calendar and know that what we think is going to happen will happen.

We mostly want certainty and we live in the most uncertain of all worlds.  The world where nothing looks right.  Sort of what I imagine an LSD trip would be.  Everything is the same but just off.....  We are tired of not knowing what is going to happen or in some cases not happen. 

A hard part of level four is the isolation.  Most is self imposed but some comes from people being afraid to ask you what is going on....   No one wants to ask the question and find out how bad things have become.

My sister called and asked what was going on and I realized we have been doing nothing.  Mary-E is processing and in a dark hole.  She sees no reason to get out of bed right now.  It takes her a while to figure out things but there is an appointment next week about her GVH and she is worried.  She has failed to taper 3 times and really really wants off the prednison.  She knows it eats your joints and causes other mega problems.  So she withdraws, I try to tempt her with short forays into life.  It will be fine.  It is just a bit of a rough patch. 

For the record, I never took LSD and the day the guy that invented it gave it to the medical students at GW.  My dad was in the hospital recovering from appendicitis.  

You Do Too Much....

How often do you hear this or say this to someone? 

I have a lot to do and always find more to do.
I say it when I feel I have not done enough and see there is more to do. 

Trust me there is so much to get done and I often fail miserably in some things and excell in others.  Laundry no.  Keeping in touch with a scared confused young adult in Turkey at day 9 of her double cord blood transplant, I am jonny on the spot....

You can never tell what is really going on inside the mind of a cancer mom.  We are special kind of creature that is busy trying to remember what life was before cancer came and trying to get through each blip and disaster that comes our way.  We feel bad that our child has cancer and when you ask about it we try to make it okay for you.  We try to hit the good points and not dwell on the dreary reality.  Some would call it denial.  But know we know the reality and will deal with it later.

Part of how we deal is doing something we can do.  Read, needlepoint, quilt, write endless e-feedbacks and try to make things better. Write long endless blogs.  Garden.  Fail to garden.  Cook, shop, walk the dogs, go to events, organize events, spend time on Facebook, Internet research on better cancer treatments, clean house, organize pictures, scrap book, fill boxes with stuff that should be put in scrap books, finish projects, start projects, walk the dog, go out to eat, order in, shop, text, answer the phone, refuse to answer the phone, write letters, forget to mail the letters, take long showers, forget to take a shower, start a bunch of books and never finish them, fold a thousand and one cranes, forget how to fold cranes, worry that you did something to cause cancer, wonder how everyone else's children are doing, worried that they won't make it, wonder if life ever will return to normal, try and figure out if there will ever be a job that will take you given you don't know from day to day whether or not you are available.  

So  

It is a weird life.  We do what we do to keep from going crazy.  Thank-you for your love and concern and support. 

We all do too much, lets hope it is too  much of all the right things.....

Don't Get Me Wrong, there are good Stories.

I am not a gloomy person.  I am a happy, well adjusted human being.  Generally life is good or we can make it good with a little effort.  There are some weeks that are better then others.  

People don't want to know the dark side.  I totally understand.  Hope and statistics is what gets us through the days and nights and each scan and each impending blood draw. Those of us in Cancer World have no choice.  No choice leads to acceptance, mass rationalization and coping mechanisms abound for humans.   It is what it is so DEAL.

Lots and lots of kids do their time and move forward, just like in the movies and on TV.  I remember the lovely one episode of Grays Anatomy when they did a bone marrow transplant in one episode.  Child was in the hospital for about 56 minutes.  

This process, like so many others, is long and complicated.  It more like remodeling your bathroom.  You start with a water spot.....  4 months, thousands of dollars later it is fixed.  But sometimes the fix reveals the uranium mine under the foundation and the whole thing has to go. 

Mary-Elizabeth is in that awful part of construction where they are doing the trim, the fixtures have not arrived and there is that pesky problem with the toilet still rocking.   All will be done in good time but somethings can't be rushed...

Five Years is not Enough

We all make deals with God all the time. If you help me pass this test, I will say 10 Hail Mary's a week.  If I pass this test, I will never swear again.  I promise to do anything to make this nightmare go away, I will even fold the laundry.  (you have not idea how bad it has gotten)

My daughter should not have cancer, I want her to graduate from St. Joe's and go to Holy Names and graduate from there... that is all I want.  I want those 5 years they talk about.

They always talk about 5 year survival rates.  When the words are tumbling towards you and your brain is in a rapid river and all you want to do is hear good news, 5 years sounds like a gift.   It is something to hang on to as your whole life is being dismantled and you are rushing down the river.  5 years. 

Well let me tell you from deeply felt experience, I want 50 years.  5 is not cutting it.  5 years off treatment flew off the shelf so fast I didn't even notice it was gone.  Whossh, and it was gone.  From what we have been told, it takes 5 years to recover from the treatment.  That should not be counted as the 5 years.  

So the docs need to buck up and they need to look out into the future.  They need to be more optomistic.  They need to re-write the script. 

50 more years...... 50 more years.... or 60.  I am not too picky or demanding. 

Both ends of the Spectrum

Mom has been sick.  Mary-Elizabeth is sick.  I have been caring for both of them.  Seems perfectly  normal but I wish they would quit tag teaming me.  I really need them to need me one at a time. 

I had promised Belle that I would be there for Karianna's trip to the "New Parts" guy but I knew when I said it, it would not be reality.  After a bit of time, Belle knew it would not work and we sent "her brother" Alex to be the voice of reason.  There are times there is need for someone else to be there and tell you it is okay and we will get through this. 

Alex has that calm Foster demeanor and the Lanham sense of humor.  That is ever so helpful.

Mom is feeling better and going to leave the house because it is Housekeeper Monday.  She is going put the dog in the car, drive to a breakfast place and have breakfast.  Big steps for her.  I don't think she has driven for several weeks, maybe months.  She should do fine. 

Mary-E is fighting off the needle pokes.  She is feeling well enough to simply tell them "NO" to more than one poke a day until she gets her port.  She has taken on her own care with a new sort of verve... I can tell she is feeling better.  

They both are feeling better.   I can turn my total focus to School, Parking Permits, and maybe even a UCard.  How cool is that.... 

Mercury Must No Longer be in Retrograde

Mary-Elizabeth has her big follow up appointment at SCCA. 

I had my first class at the U and loved it.

I was called at 6:10 am and asked to Sub.

We are moving forward.

Yim recently went to Eugene to visit mom.  He took this picture. Lots of my cool pictures are from his cameras. (He buys and returns camera's  like crazy. He loves America because of the return policy.) 

Yes I know I have two pictures of mom but I don't know how to get rid of the extra....  Things are better but not perfect.

Might be time to Trust in Health Again.

Cancer World Mom's are a suspicious group.  We are pretty hardened by the various things that have befallen us over the years.  The disappointment and sadness when our children are sad about not being able to swim or go to school or have ice cream because they have that disgusting water reservoir they use to hold the scoops.  Unexpected fevers, side affects caused by medicatoin given for a side affect, a child that gives herselve 7 shots a day, a ANC that is 195 and keeps you in the hospital. 

You are always on guard.  Never a moment of true restorative relaxation.

Do you wash your lettuce?
Do  you wash your hands after using the bathroom (at least one server at Portage Bay does not)?
How long has that roasted chicken been in the box?
Is that Feta? and has it been cooked to 160 degrees?
Are you feeling all right?
How is that ankle, finger, bump on your abdomen, weird tingling feeling over your left eye?

I expect that I should be able to just step back on to the fast track again. I want this to be something that is behind us. I don't want to be in this weird space.  What I am forgetting is that it took several years to begin to believe things were all right and we had a pass to rejoin our life. 
 
"Things are great"was taken away a  year ago.  A phone call, a few frantic calls to try and make the fear and doubt subside and then the  sick, horrible realization it was BACK.

Now I seem to be caught in the whirlpool of doubt and fear and anxiety.  Each time I have stepped out and tried to get back on track, something has happened.  Short trips have resulted in hospitalizations. Scheduled lunches, headaches came.  Planned adventures and a schedular calls to change the date or time or cancel or set a new appointment.     I have just now started to put somethings on the calendar.  Even when I do, I never ever trust I will be able to follow through.

As Mom's we believe that if we are not here and on top of every single moment, there will be a disaster.

I am very good at not being a dreaded helicopter mom.  Mary-Elizabeth spent months in Mexico with her Grandma starting when she was 3.  She flew home by herself when she was 5.  She took the bus from school to Downtown on the #10 when she was in 5th grade. She was not over mothered by any means. In fact many thought I was very careless in my care of her. 

So as she sits and works endlessly on her two classes, I have to let-go and learn to trust again.  I need to find a job.  I need to really start to pay attention to me. I need to trust I will have my daughter back, to stay. 

Maybe if I chant "she is going to be okay"  a thousand times a day, it will happen. 

Here is to learning to trust again that"she is going to be okay". 

"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"

Deep into the Corners

In Cancer World the docs are always on a hunt into the recesses of the body for lingering cells. 

They look in the bone marrow, the spinal fluid, the testicles (if applicable).  They are always looking.  They say that cells hang out there and must be tracked down. 

Now Leukemia is not like solid tumors, stray cells don't float around, attach and then find a new place to land and grow.  The cells they find are just evidence that somewhere in the bone marrow, a cell is being bad. 

In Mary-Elizabeth's case the sleeper cells did not show themselves for more than 7 years.  They were shot down and suppressed and waited.  Waited and Waited and then one day they came out to play. 

 I have theories.  Stress, potato chips, bad school food. Lack of diligence, too much diligence.  Cosmic rays, too much fresh air, not enough fresh air. Too many pesticides, not enough pesticides.  It is all a mystery. 

I guess cancer is sort of like a hornet's nest.  It secretly grows in the Rhododendrons in your back yard until one sunny day when you are sitting on the back porch of Carolynn Baker's house and a raccoon climbs up and decides hornet larva would be a great afternoon snack. 

Well I have not been very diligent at my house, especially in the kitchen.  Now that "school" has started, I feel the need to return to the kitchen and really cook.  When I turned around today this is what I found. 

Oopsss.....  Kitchen Faeries are on Restriction until we find the corner.

Loving Gonzaga today.

She is sort of going back to school. 

Because her immune system is so compromised  and she had no immunizations because she can't have them because she is taking something to keep her immune system compromised.....  see what I have to live with everyday.

She can't go to school in a classroom.   So everyone says, "Can't she take on-line classes?

Oh yes she can but college is not on-line classes. It is planning dinners for the neighbors, watching Big Bang and eating pizza with the boys.  It is late night study sessions that turn into tired hysterical laughing sessions.  It is trying to wake up your roommate for a class or going to a movie or bra shopping.  It is so much more than going on-line.

The biggest obstacle has been her course of study.  She is in the Engineering Management program.  Classes have to be taken in a certain order. 

Yesterday she heard from her advisor. They are working on developing a way for her to take her circuits classes on-line.  She was hesitant but was so happy once those fears were overtaken by excitement.  She also found one of her really good camp friends is going to be attending SPU and won't be "leaving" for college.  Anne has a car, loves Mary-E and there will be a chance for some of the very necessary social pieces of college.  Sort of.

At this point we love Sort of..... We totally love Gonzaga.

The sun is up, I should walk the dogs.

The Plan:

Water the yard.
And feed the birds.
And floss my teeth.
And fill the yard waste bin with something I don't want.
And do some more desk clearing.
And do some laundry and hang the sheets out to dry.
And rake up the irritating pine cones on the side of the house.
And do some gardening on that side and maybe plant a tree or two. 
And decide what outing we can do today to get Mary-Elizabeth to do some more walking.
And call my mom and tell her about the newest news on Featherville Idaho.
And look on E-bay for Ice cream forks lest I ever return to the 1988's.
Contact my newly found Barnes Cousins and send them some pictures of the family and plan a mini-reunion.
Go on an archaeological dig and find more pictures in the basement and everywhere.
Talk to friends.
Figure out something for dinner.
Finish War and Peace
Finish the two quilt backs so I can start a new one. 


Reality:
Some watering,
Potatoes dug,
The yard waste filled a little bit,
The Russians are almost to Moscow
My cousin Jane came over.  She is moving to Seattle and lots to say.
Trip to Snohomish in search of a desk for Mary-E
A lovely lunch at a Thai Restaurant,
Lots of walking around a cute little town,
Child not exhausted and would like to go again.

Sometimes the things you end up doing are much better than the Plan.

 I think the Spaghetti Nebula just happened without a plan.

Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.