Lots Out there.

Lots of choices, lots of crazy, lots of pain.  There is a mom who's three year old died. She does not trust she did the best she could.  Best hospital, best questions asked, best efforts to help her child.  She is in so much despair.

There is a mom with a 17 year old that went to his prom and things were going along and his ALL came back just before transplant, with a vengeance and nothing could or did stop it. 

There is a mom who is waiting and watching her child slip a way.  The long slow unwinding of a young life.  Just like birth, death takes awhile.  It is a process.  Sometimes a very surprising long process.  

I have imagined having to say Good by to my daughter.  I have wondered if it would be sooner rather than later.  I was deeply frightened the first time but this last time was not fright but stark terror.

There were times, I was not sure how much more her body could take, or she could take.  
I was at the hospital yesterday and saw a tiny little girl on a bike.  She was working so hard to ride.  So happy to be doing so. She had way too many pumps on her pole to be anywhere close to done.  

I handed off a Wishing Rock bag to the dad, told him he could get a little insertie thing for the heavy pole, said a prayer and walked on.

This sick kid thing seems so surreal.   Stacie is with her daughter Allie (not Yakima Allie). She is holding daughter's hand, rubbing her body with cannabis oil and waiting for the inevitable.  The time when she will take her last labored breath.  The time her spirit will leave behind the cancer ridden, chemo, radiation, surgery ravaged body behind.  She will grieve and rage against the universe and will be surrounded by those that love her and her other children and she will somehow with some super strength, walk out of the hospital and bury her child.  As she lets her grief be known, we will all walk with her and feel the bit of her heart that will never heal. 

I don't remember the child dying part as being part of the bargain.  No one should have to complete the birth to death cycle. No one should ever have to leave the room or the hospital or the hospice again. 

I think about how Mary-E just headed off to see the eye doctor.  10 years ago this week, she went to see him and our journey into Cancer World began.  I am relieved she is able to drive and stay up late and leave the lights on and complain about my cooking.  I love she can do her laundry, is looking for a job and still has a sense of humor.

I am cognizant every single day  of the blessings AND the sadness swirling around me.  Both need to be honored.  

Allie is in the blue jacket.

One less Portrait of Dorian Gray is in the upstairs room.

Someone really really special left very very early.  I mean, lets be honest, when I first met him, 54 would have felt ancient. Now it feels young. Kirk never aged.  We knew there was a portrait somewhere!

Kirk Hadley, or Captain Kirk to many, made a quick exit.  He died.   He just up and died.  I don't know much but I do know he will be missed.  Not that everyone won't be missed but I will miss him and feel the loss for a long long time. 

He smiled, he questioned, he cried.  He was a whole person.  He was someone you could not see for years, maybe decades and then slip back in to the same easy place in your relationship. He was my friend and I loved him. 

In early May I was questioning the wisdom of taking a trip with my daughter across the country.  Cons:  No visible means of support, ancient car (with good tires), family members upset that I was not working.  All the grown up reasons we don't do things.  It did not make sense to drive 5600 miles on a whim.  

I received my call from Lori and then  I knew.  I could meet a sudden end or Mary-E could relapse again or have a stroke or a pulmonary embolism or be on a college campus and have some gun toting maniac come shooting.  

Pros: Time, I had time.  Mary-Elizabeth had time.  

Not everyone has time. Time is precious. Time is not to be taken for granted.  We all assumed Kirk had time.  More time. Lots more time.  His time ran out.  He doesn't get to see his grandchildren. He does not get to play another round of golf. He does not get to see his son's continue to grow into fine young men. He does not get to have his mom's pot roast.  

Time, not money, or jobs, or new cars.  Time is the defining factor.  Time is painfully limited but seems infinite.  

Time with someone is limited.
Time without someone is infinite. 

Capt Kirk.  You will be greatly missed.  You were loved and appreciated and valued.  

 

Hoping our Lasts.... stick this time.

The last dose of Chemo,
The last round of Radiation,
The last Scan,
The last meeting with the Oncologist,

Everyone is very tuned into the lasts.  The first start out in such a shock cloaked whirl of activity, "Last" seems hard to imagine.

We did all the lasts and then we did the big Palisades Party and the Lake Union Party.  We celebrated like the best of them.  The we did the rest of high school and summer camps and summer jobs, and summer vacations and did what we expected to do... Go on with our lives. We had ports removed and we had appointments that allowed such things as normal  dental appointments.  

We took it to heart.  Then...... Out of the blue, when Cancer had been forgotten.  We did it again and it was so so much worse.  We don't even know how much worse it has been because we are not done yet. 

Every time we celebrate the many good results, the ends of ..... fill in the blank.  There is a part of me that says a special prayer.  

Dear Universe:  I know I am a lawyer and we are ones that love endless appeals.  We do believe there are "no answers, just arguments", but in this case, make this be done.  Make this battle with cancer the last and only such battle in the life of this child.

We are headed this summer to many lasts.  I really am not interested in doing any of this again! We all have too much other stuff to do. 

Here's to a bunch of firsts....  Still looking for the cowboy that should have come with my slicker....

Childhood Cancer...... Rare? Depends on your perspective.

Childhood cancer is seen as a rare disease.  Lots of money goes to things like Breast Cancer, Lung Cancer and Colon Cancer. 

So these are the facts:

 Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.

 35,000 children are currently in treatment for cancer.

 Some 25% of all kids who are diagnosed with cancer die.

• Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
• Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.

 More children die of cancer every year than adults died in 9/11.

 Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

 The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.

 The death of a child is one of the most traumatic events a family might face.

• Families who have lost children are often financially and emotionally depleted.

This is Cancer World.  Now given there are over 300,000 million people in this world, Cancer is Rare.

When you are in Cancer World, none of it seems rare... It is our lives.  I am not sure why they always report the occurrence of childhood cancer as if it is surprising.  Those of us here it is not rare. 

Each parent of child with Neuroblastoma, knows a dozen kids with the same "Rare  form of cancer.  For a child to die of OsteoSarcoma, shish, happens all the time.  For a child to fail at a Bone Marrow Transplant, so so common.

It is all about perspective.  It just irks the Cancer Mom's when the words

Rare

seldom,

almost never happens

are bandied about our feathers ruffle and our feelings are hurt.  We are so so sensitive because all the kids we know have cancer.  It is not a rare event. It is our everyday life. 

When you enter Cancer World you are immediately

 put on a floor with kids that all have the same thing disease.  As your former live is taken over by being in Cancer World, you make more and more connections with families with cancer.  If you take stock of your life and your connections, few begin to be Cancer Free families. 

Because your child had cancer, everyone with cancer in their life begins to share.  You learn all about their journeys.  It is a way to connect and to be supportive. Sort of like when you are first pregnant and most women have a birth story to share.   Sharing and connecting is in our very beings. 

Childhood Cancer is rare when taken from the view of the entire population of the United States.  It is not rare on the 7th and 8th floor of Seattle Children's Hospital.  

It is the most financially and emotionally devastating form of cancer.  You think it is hard to parent a Teenager, try doing so with one that has been through treatment or diagnosed during that time.  We all complain we did not receive a manual for babies. We certainly don't have a manual for helping a child die and for burying a son or daughter. 

Lots of people are upset by the book "The Fault is in our Stars" and another one called, "I Wish My Child had Cancer".  

It is all about perspective.  How are we looking at things?  Which part of the animal is the blind person touching?   I get upset when I think someone should know better when they speak.  Dr. Charles Hemenway, an oncologist was one of them.  He really upset lots of families belittling their pain and struggles. He then explained himself as being a kind caring oncologist but not a lot of people bought his explanation.

He is one that should know better. 

Again, perspective.  Where are we seeing this story unfold? 

Multiple Uses for Weird Things in Our lives.

I find things that have one purpose and often they morph into something else.  Something completely not related.  Take the china mug for instance. 

Somehow over the years, my mom has come to want her coffee hot.  She does not want it to be microwaved if possible. She wants it hot. She wants it piping and strong and so she has it that way.   Thus the saga of the China Mug.  Not pottery, but china.   Bone China. Best possible quality.   She is so certain as to what she wants, she leaves a couple of mugs at our house.  She travels with her mugs and she looks for them always. 

China Mugs are part of the Wishing Rock Project bags.  May seem silly, such an item to be tucked in a bag with other much more practical things.  Trust me, it is hard to have a hot cup of anything at Seattle Children's.  The mugs are a symbol of trying hard to hold on to something civilized during a very difficult and de-humanizing time in every one's life. 

Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

The Mug is so much more. So much more. But then many things are. 

I was working in my kitchen and it was time to run the my salt cellar through the dishwasher.  I decided to figure out what it was.  I have used it for years.  I found it at Goodwill and it is a cool piece.  I just never could figure out what it was.  Well I have been using a container used to stain slides.  The wire to lift the insert out is missing. 

So now I am wondering what has been in this thing!!!!  I have used it for years.  How just creepy and scary is that!!!!!.  Is it contaminated with some horrible stained disease?  Have I made people sick?  It is too late now?

Just some of the questions I have. Just a few of many many that run through my brain every day.  

Okay.  Time to go wash the mugs for the bags to be delivered this week for Wishing Rock and to double wash the Salt Cellar. 

Waves of Pain When a Child is Gone

Facebook has created a place for people to share. They share what they are eating, cute kitten videos and now the pain they experience when a child dies of cancer. 

We have been lucky enough to avoid this most heinous of losses but we always know it is there. It hangs around. I have watched it so many times these last few years.

I remember being on the floor when Meb was in treatment.  Sarah was dying. She had lost her battle with a nasty form of Lymphoma.  On the old floor people were moved to a private room and then a one on one nurse was assigned.  Then the people start to come and say good by.  We all watched as streams of young adults and family members came and went, beyond visiting hours.   

Then the Father showed up.... The hospital helped him come but he clearly was very uncomfortable.  He was standing in the hall one day looking very lost.  I approached him and told him I did not know his daughter but I could tell from what everyone had said, she was a great person.  Her greatness was only validated by all the people that were visiting and letting her know she was loved. 

He looked at me and told me there was going to be a miracle. They were going to fly her to another hospital and she would be well again. I put my hand on his sleeve and he simply grabbed me and I hugged him with all the strength I could muster.  He continued to hold back his tears and fear and terror.  A terror I can only imagine but I have felt emanate from so many whose children are now gone. Rebecca, Mario, Joseph,

Jaxon, Ruby.... this list goes on. 

Micheal was laid to rest yesterday. Allie will leave this planet soon.  Katie and Daniel are moving forward on their bucket lists with great alacrity. 

 It never gets easier. because there will be more.  But the miracles will continue to happen.  Really smart people will keep working to fix these kids.   And we will continue to believe it will be better someday. 

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. 

Secret Fears that are not So Secret

Sometimes there has to be some distance between the event and the reflection to make some sense and have some perspective. When we are in the heat of the moment, we can only do so much and take in so much. 

I thought I was pretty much on top of everything until I went to a survivorship conference.   They are all sort of the same. Cancer World people. Inspirational speaker:  I had cancer and I made it and I don't have any problems. (Denial is a great coping mechanism.) 

When you enter cancer world it is all about survival.  What percentage of kids with this kind of cancer "Survive".  I totally understand the need to be so focused but the longer you are around, the more you realize that percentage is only a tip, the very very tippy top of the iceberg of information.  

It is so so complicated and each kid is different. There are things they don't want to talk to us about or they mentions in passing. As we are going down the road, we find out about them.  I can remember when I sat there and heard someone that had treated Mary-E explain that Spinal/Cranial radiation continued to damage their bodies for 3-5 years.   That is a long time in a child age 12.  

I could not believe I had missed that little fact but went back to this blog and sure enough, there it was.  Clear as day.  In my inane babbling about heavy doors shutting, eating and sleeping problems, I had missed an important fact.  These life saving doses of radiation were taking away her brain and thyroid and God only knows what else.   For 3 to 5 years. 

But... do we not follow the protocol. The time tested method of trying to beat this thing. Probably we do what we can to help her live.  

It is only later, in the aftermath and years later do we try to second guess ourselves. 

Should I have done this.....?
Could things have been better if I had done this........?
What would have been the result if we had tried....?

I remember be terrified to know we were going to miss a round of some chemo.  How do we make it up? Will it come back if we don't do more?
How do we know if it is really all gone?

We walk out of clinic for the last time. We note the last bit of Chemo. We celebrate the end of treatment, we go on a Make-a-Wish trip.  

We close our minds to all the doubts that sit in the background.  The stirrings of worry. The little bits of dreams that are unsettling.  We do our best to ignore it.  We want to believe that if we do all the right things and say all the right prayers and banish Spam and other processed foods from the diet, things will be okay.  

Charles Hemenway, MD, PhD. clearly is not a tuned in pediatric oncologist.  He has not seen his patients go through treatment, relapse, try again, relapse, try to find a last ditch drug and study and then watch long slow downward drain of the life that came into the world with so so much promise. 

There is a 70% cure rate.  There is a 30% death rate... The kids endure with grace and courage massive treatment and pain and suffering. 

We fear we will be part of the 30% or the 60% or the 95% of children that die.  We hear the odds, we play the odds but we all know we have no way to change the odds, no matter what we do or how hard we try. 

http://www.healio.com/hematology-oncology/pediatric-oncology/news/online/%7B476b729a-d317-4f7c-8266-d9d76338dac9%7D/new-movie-portrays-teen-cancer-unrealistically-expert-says

No wants to think about the downside of all of this but it is real. It is there and happens. 

 

The Taper Begins.

Lots of time between now and the end of July for the Sirolimus taper. Prednisonesits around until the first of August.  I thought I would be ecstatic.  I am just a bit worried.  Sort of like a mom sending her child out to school for the first time. 

Since January 24, 2012 the new cells introduced to Mary-Elizabeth's body have been discouraged from working at 100%.  The docs use some kind of suppression.  If they let them just act like an immune system by themselves they attach the host body.  

Pearl Anne has been very willing and able to go on the offensive on a number of occasions.  She had a wild and aggressive spirit. This has caused some serious problems in the past but we are hoping she has settled into her home.  For the last 5 months, there has been no serious flairs of GVHD and there are not too many complaints about not receiving lots of Prednisone to keep things tapped down. We shall see.  Tomorrow Meb will skip her 1 mg of Sirolimus at 8 am.  It will be a start to the taper.  We are crossing our fingers and toes and saying lots of prayers to the universe and all the component parts that it is okay. 

It is a nasty drug:

Sirolimus may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer. To reduce your risk of skin cancer, plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen during your treatment. If you experience any of the following symptoms, call your doctor immediately: fever, sore throat, chills, frequent or painful urination, or other signs of infection; new sores or changes on the skin; night sweats; swollen glands in the neck, armpits, or groin; unexplained weight loss; trouble breathing; chest pain; weakness or tiredness that does not go away; or pain, swelling, or fullness in the stomach.

Sirolimus may cause serious side effects or death in patients who have had liver or lung transplants. This medication should not be given to prevent rejection of liver or lung transplants.

There is a part that wants things to continue but this is the first step towards the real end. The real time when we are done. When the trip is almost complete. 

In one day, I have become one of those worrying moms that are so sure the sky is falling.  I have seen it fall before so this is a bit scary.  

She looks good, she feels good. She is making great progress. She will be fine. I will be fine. Everyone will be fine.  

We will be fine.

Maybe today we are able to continue the Taper

So we are at the point where things are really stable and have been for quite awhile.  Little GVH skin flairs every now and then. Some GVH in the scalp, but over all good. 

She has been on steroids, sometimes really really high doses for more than two years. Gut issues, skin issues.  Blood clots, Kidney stuff, Dead bone in leg issues. The usual, unsexy sort of stuff. 

But today we meet with Dr. Carpenter our lovely handsome kangaroo eating doc and I am putting my foot down.  We are done with cancer and post transplant crap.  I have not decided what to take him as a bribe but I will think of something.  Maybe something from the Spam Museum...

So while I have not had a tone of anxiety about this appointment, it has been sitting on my shoulder being irritating.  Today I intend to kill it...

Update at 11

Just one of the many curves in the road we have traveled. 

When do we stop treating..... When are we done?

I didn't realize that when we were first in Cancer World we were just on the fringes. Mary-Elizabeth had High Risk ALL with never confirmed but treated CNS involvement.  She did the 2.5 years, 12 doses of spinal and cranial radiation.  The whole ball of wax.  

I met someone I had known in a previous life and she was the first child I knew that died from this most heinous disease. But she was really the only one.  As I look back, I know we sort of sailed through Cancer World Part I. 

We wondered about people, we had some connections but not like now.  When Meb relapsed and we started doing serious hospital time and a transplant, we really were in the thick of things  We were introduced to an entire other world. A place of deep darkness and horrible results.  Heart rending darkness.  We had been in and out before, a day, may three or four.  Now we were doing months.   Weeks and sometimes it felt like years.  It had a whole new intensiveness. The difference between John Glenn flying around the world and a moon landing. 

I don't ever remember a discussion in Cancer World I when there was a discussion about being done with treatment because there were no more options. I never heard the words Hospice, Palliative Care or words like End of life care.  Because of my relationship with one of the providers, I knew it happened.  Tracy would call it a "do over". 

This time has been different.  I don't know if it is because we spent time with sickest kids, have reached out more, Facebook, or what but there are lots of kids dying and getting ready to die.   Many children just run out of options. 

Their parents are in such agony.  When you start you are told the odds.  Even when they are not what you want to hear, you know there is a chance. There is a possibility, there is hope, there might be a new discovery.  There might be a "miracle".  There might be..... our world if full of might be's.  Might be a new study. Might try a new drug. Might be......  

In so many cases there are no longer any options.  The cancer wins.  The brave decision is made to stop the treatment.  There will be no "Cure". The cancer wins.  

I have no way to even think about making that decision.  My daughter has been very clear that she is done.  She won't do all of this again. She is a full fledged adult and she is in charge of most things in her life.  She will not submit to treatment.  She lives her life with that in mind.   It is hard to think about but then it is easier than having to make the decision as to what to submit a child to in treatment world.  

We give them poison, we bemoan the fact they cannot have more poison because the counts aren't good. We watch the door close on the radiation chamber and are glad the protocol is going forward. We grind, conceal and give them endless amounts of drugs and potions.  We do anything anyone suggests to save them.  To let their lives continue. To let them return to normal.  Does it ever?


Done, when are we done?  I don't think we ever are done.  Done is an illusion. We just reach the end in different ways. Some return home and try to return to normal

. Some stop all treatment. Some watch a child slip away.  Some bury their child and try to go on with life.  


I don't know even what to say at this juncture. I just know what I can do.  I can try and be as supportive and listen to those at different stages and maybe be a shoulder.  I will try never to pass up an opportunity to do something positive for someone in pain.  I will never forget that we are all done at some point and we need to make this time of value.   

Drinking Coffee, Watching the Birds, Gazing out the front window.

This font is 

Perpetua Tilting MT

…. Seemed appropriate today since one of our friends from Montana had their world tilted today with bad bone marrow results.  Caden is a sweet little boy that has been in cancer world for a long time and looks like he is in for some more treatment.

They are part of the group from Montana.  Alistaire is one of the kids from there.  I have met several families from Montana and did not really understand how hard it was for them to come to Seattle until I spent some time in their lovely home state.

First Montana is a continent.  It is huge.  You never feel like you are making any progress.  You can drive for days and never escape it’s boundaries.  Wide open spaces (Dixie Chicks) is a good Montana Driving Song.  

 Montana Traffic Jam.

Lots to be said about it but to have to leave and come to Seattle must be a horrendous experience.  Here is a picture of a Montana Traffic Jam.

I realize this is one of the best places to be for treatment but then any treatment for cancer is a tragedy.  It does seem like it never ends.  We all face the appointments, the scans, the pulmonary function tests, the side effects, the after effects, the long term side effects. 

Mary-Elizabeth is for all intents and purposes 2 and a half years out from transplant.  In two days we face the music and the scrutiny of the GVHD doctor.  Blood work, Pulmonary function tests.   Even as far out from transplant it is nerve racking.  

We all face these times with great trepidation and concern but in cancer World, they are a necessary evil.  The Scan Moms call it Scanphobia.  I am just worried.  That kind of worry that requires lots of extra coffee and time looking out the window in an attempt to calm myself.  It is sometimes works and sometimes I need more coffee and maybe chocolate. 

Hoping Caden's family finds good answers and can return to beautiful Grand Montana. 

 

All the Power in the World is often not enough

There is a secret place on Facebook called Momcology.  It has places for parents of children with cancer to exchange ideas and thoughts and ask the really hard questions like "Am I the only person that gained weight during my child's treatment?" "Should I be worried that my child has lots of bruises on her body?"  "My doctors thinks I am nuts but I think there is something wrong.  Should I insist on going to see the doctor?"

Because these groups are growing and becoming more known to the Cancer World Moms, we are learning more an more about each other. Part of it is not good.  Part is very very sad.  Kids that have come to the end of their options.  They are just done.  Or as Tracy used to say, "They are going to have a do-over." We are getting to know the other part of the statistics, the 20% that don't make it. The 60% that fail at transplant..... the 50% that relapse and die.  It is sometimes more than any one person can handle. 

Endless posts of parents in pain.  No options, no other treatments, no answers.  We all have plans for our kids.  First day of school, First Communion, First Prom. First boy/girl friend. First time behind a wheel. Firsts.  Never in our wildest dreams do we have plans to buy a dress of a casket or discuss with a 16 year old what they want to do before they die.   We just don't know how to face the world without them.  

So so many people have to do that, despite the best efforts of the combined knowledge of the scientific and spiritual world.  We (and I say we as the greater part of humanity) lose kids every single day.  Little lives end every day.   What is so scary about Cancer Kids is often when they die, there is a bit of relief in the knowledge they are no longer suffering.  Suffering they do.  These kids are beacons of strength and courage and perseverance.  We use military language to describe them: Trooper, Soldiering on.  They show us everyday how important it is to live for each moment because they are facing their last. 

As we drove across the country we were amazed at the power and forces of nature. Knowing the ravages of time and momentum and dynamism shaping our world even today. 

Simple forces, heat, wind, water, pressure, fire, earthquakes. All engaged to create the things we gaze at in wonder.  

I think we need to be patient.  It took thousands and millions of years for these places to take shape.  Cancer will take a long time to cure and better prevent. 

Still I hate Cancer.

I think Cancer is Like Spam

We don't want it.  We can deal with it if we have it. We can make something wonderful out of it if it is our only option. We don't know what it really is but we know it is real. Bits and pieces all put together with research and procedures and endless tests and scans. 

It comes in a lot of flavors. But is really is the same.  

A hunk of gelatinous meat stuff.  Lots of people have experience with it.  It has touched all of our lives.  It is scary and mysterious. Those who have embraced it seem to understand and know what to do with it. Those on the outside are just plain frightened.  

Sometimes is is just all you have and you will make the best of it.  Sometimes it fails you.  The little do-hicky on the can breaks.  You just don't have the pineapple chunks to mix with it or you are out of white bread and yellow mustard. Sometimes people make fun of you. They don't realize you don't have a choice.  It is what you have and you have to make it work. 

The really crazy part of it, is it lasts for ever.  Darn near forever or what seems forever. We visited the Spam Museum and the expiration date on the items we purchased are January 2017..... 

Some are lucky to escape and leave the cans of Spam behind for others to deal with.  Some never leave it behind. Some have to come visit again and again, in an endless loop of cans or now in Singles...


We feel we are ready to leave it behind.  We know we are really really close to the end of this part of our journey.  

Slightly Different

McDonalds is everywhere.
Gas is really cheap as you drive East. 
Food is really cheap as you drive East.
There are not real veggies in the middle of the country.  Most of the time I thought I was eating in Seattle Children's Hospital Cafeteria.

Here is an example of a Low Fat Healthy Choice:

There are lots of things to buy.  Fudge is ubiquitous.  Good Coffee is not. 

Barns in Illinois are different than in Iowa.  Iowa barns had quilt squares on them.  Illinois had weird barns. 

Trucks drive differently in each state.  Hate Kansas and Ohio and Missouri, they don't have to stay on the right except for passing and they are really trying to get somewhere.  So you don't have any idea when they are going to jump out and cause trouble. 

Back to coffee.  OMG.  Nothing. The entire state of South Dakota has not Starbucks (my least favorite).  I did find that if you go into a McDonalds in Missouri and ask for just shots, nothing else, it is almost drinkable.  That is how far I slipped.  

Dogs in Missouri are better behaved than in Seattle. 

Missouri smells like freshly turned dirt and Kansas smells like

Syringa.

Donuts are everywhere. People eat them and are not ashamed. 

We went on a big adventure but like most of life it was made up of very small things of great wonder.  We took time to observe.  

Still looking for  Moose, a funnel cloud and a White Castle Burger.  

My First Real Vacation

Long enough to relax

New but familiar experiences

Great book to read 

Great book to listen to

No specific purpose but to spend time and reconnect with each other 

This was the first time in years we have together that was not medically related

That was the best reason we had a real vacation.  

Driving in the dark.

Our last night in Twin Falls, I had a dream we should stop in Yakima and see Amber and gang.  It all played out in the dream.  Goats, Allie, Sam and his crazy idea that pizza should not have pine nuts and goat cheese on it.  But then I knew we had smelled the barn and wanted to be home.  We were ready. 

I knew staying in Twin Falls would make the day longer.  A couple of hours longer.  I did not know how long or how far. 

I must say I was pretty impressed that we had driven all but 110 of that distance since leaving at 10:00 am.

Granted we did not leave Twin until about 11:30. 

Car needed to be washed, we needed gas, MEB needed boots. Cowboy boots and we knew we were headed back to the City.

  I need to see the Niagara of the West.  

 What more can I say.  We were avoiding the inevitable.  

I don't think I can express in words how fabtabulous the journey was. It was important to disconnect and really hit re-set for us.  It was necessary to reshape our relationship, our reality and to do so in the vastness of this country. We were rushed, but not really.  Whenever we stopped at a planned or unplanned destination, we were not rushed.  We did not leave before it was time. We stayed focused on the event.  We waited for things, we observed, we soaked it all in and only then moved on to the next thing.  

Cancer has given us the ability to focus on the NOW.  Not next week or the upcoming anything.  We are just able to be here, now. 

Time is a gift. A gift we often squander. A gift we waste with alacrity.  We are a fast, rushing people. We are too busy doing too many things at a time. We have lost our ability to just "be" with each other and connect.

While we didn't want to leave Twin Falls we knew what was waiting for us at home.  Dogs, people, gardens, job applications, on-line college courses, but more importantly our friends and family. 

We drove in the dark, we slept in our own beds. 

We are glad to be back and have created enough memories to push  Cancer Part Two... to a more manageable place in the memory banks.