Saturday, May 31, 2014

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. 










 

Thursday, May 29, 2014

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. 



Wednesday, May 28, 2014

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.   


Tuesday, May 27, 2014

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. 
 

Monday, May 26, 2014

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.

Sunday, May 25, 2014

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...
SPAM<sup>®</sup> Single Classic

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.  

Saturday, May 24, 2014

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.  

Thursday, May 22, 2014

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.  

Tuesday, May 20, 2014

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.





Monday, May 19, 2014

Waking with More Questions Than Answers

I am a person of endless questions.  I want to know about stuff.  It is a driving passion. Why is the dirt red here?
What is our elevation?
When did they plant those trees?
Why didn't they ever plant trees?
What are those trees?
What is Devil's Slide?

How did they find the passes through the mountains? 
Why did Lewis and Clark use the Missouri and not the Mississippi?

Endless, all the time.  Discussion, and contemplation and Google searches.

So yesterday as I was driving into the valley, I was thinking about the last time I did this drive.
I was 22 years old.  The age of Mary-Elizabeth.  I was going to my first job as a Teacher in Dietrich Idaho.  I was to teach English 7-12, Reading and be the Librarian.  Salary of $8,800.00.   1977.  

I don't know the answers to so many things.  Where did I stay until my little trailer was ready? What did I bring with me?  Did I have my sheets and blankets?  How did I furnish the place? Was there furniture here?  
How in the hell did I do the job? I do remember a call to Dad and some tears.  I was worried and afraid and felt so alone. The call was from a pay phone in Shoshone. 

I am going to have to ask Amy.  She came to visit me.  

I do know the answers to some of the questions.  I learned to love it here.  To this day, I love the high desert with the vast horizons, the burrowing owls, the antelope, the storms, the sunsets.  I remember growing to love my fellow teachers.  James, John, Judy, Anne, Janet.  Each added something to my life in a different way.  Things I have carried with me all these years.  

Oh, dear, time is running out for this mornings musings.  I am meeting James and John for breakfast in Twin Falls before we make the final push to Seattle.  To our current home.  

I am so glad to have been on the road to Twin Falls more than one time in my life. 



Sunday, May 18, 2014

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.
?

Saturday, May 17, 2014

Speeding back

Go West Young Man
We are following that tenant
Ohio
Indiana
Illioniois
Missouri
Kansas
Every state is so different
In Missouri we were reminded
"Planting Season Watch for Farm Vehicles" we saw one tiny blue tractor.  We think this is equivilant to Watch for Falling Rock or a snipe hunt

We continue West. Kansas
Colorado and on to Wyomming.  




Friday, May 16, 2014

Dark Side of the Moon..

Sun again. A bit of sun.  We are finally at the end of Eastern Journey.  We swing around the back side of the falls and head back West.
Frankly I was a  bit disappointed at the falls last night.  We of Western blood are not used to seeing falls quite like this.  From here we are on the top looking down.  I was raised with  Bridle falls, Yellowstone falls,
Snoqualmie falls.  They come to us from mountains high above.   This is something where the water just falls, over a cliff and we are level with them .  the mist was also in the way and the huge Midwest thunderstorm.

The sun woke me about 6 am and I was pleased to see that the mist settled down, and I began to watch the water, the never ending water fall, plunge, leap, did I mention fall, down the horse shoe cliff.  The river is Mississippi wide and smooth and the rapids are short and tentative.  I can imagine it must have been a surprise to see it from river level the first time.  As I look at the people walking by this morning, the size is confirmed.  I will be wearing my new Cowboy rain coat.  I will be seeing it up close.  I will be a grand adventure to our trip.  Our swing around will be eventful as we head back to our home, crossing the country licity split.

This time it is about seeing people we love and care about.  Part of our people that have been with us for so long. Deeply held and valued friends.

Tuesday, May 13, 2014

Wind Is Blowing us East.

serious serious wind...
Whistles through the trees, what few there are and pushes us East.

We did a good amount of driving yesterday.  We are having to change one of our stops which will change  some others but then we are good at dealing with side affects.  

So we head for our first unplanned but must do Spam Museum.  I have not seen a single sign heading us to this discover.  We are good explorers and we will find, devour and shop in the gift store.  

Then off the Niagara.  No Racine.  They just opened the Johnson and Johnson headquarters building to tours and they are all full into fall.  I am not the only one that wants to see it.  Oh well.  Who knew?  I guess lots of Frank freaks.  So we will re-route and see were we go.  I think we will be heading down from here and over.  We will have to push it to be there tonight but then we will see. 

Still driving 80, on red roads... flatish land.  We are going through lots of reservations of the Plains Indians.  Same observation, bad houses, piles of cars, Great Horses..... As we go and see this place, it makes you ponder what the Indians must have thought. I understand why they fought for their land. The most puzzling for them would have been why we wanted the land. 

How hard would it be to loose this great vast space, life giving land full of buffalo and fish and fowl and we wanted to dig holes and find gold.  Something they did not value and from the looks of their places their values are still different.  They have lost so so much of their culture but the horse is still cared for in a special way... 

Makes you think.  Makes me sad. Makes me wonder.  It is nice to be on this trip and see so much of the country still thriving and growing and not totally destroyed and polluted...


Monday, May 12, 2014

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. 

Sunday, May 11, 2014

Short Update

Spokane
Liberty Lake
Top of 4th of July Pass
Missoula

Clinton
Drummond
Philipsburg
Anaconda
Butte
Crazy Mountains
Bozman
Billings
Pompey's Pillar
Little Big Horn Battle Field
Broadus (Powder River Tavern, Cassino, Bowling Alley and Arcade)
Devils Tower
Newcastle

What can I say as we wander

our way around the West.  Long roads, no cars, blue sky, cows, deer, antelope ranging, elk, prairie dogs, horses. (Crows and Cheyenne have better horses)

This is a trip of amazing vistas, mind expanding experiences and wonderful time with each other.  We are great road trippers. We laugh, we talk, we say "oh look" all the time.  Nothing boring, nothing simple, nothing complex, just exploring.   

I do love driving 80 miles an hour.... 
On to the Jewel Cave.



Tuesday, May 06, 2014

Certain Days there is Space for me to do Certain things.

For the first time since transplant, I am leaving our house for what seems like long time.  I am truly going to be away.  We were in Eugene a whole lot of last summer but it was different because if need be, I could be home in 5 hours. The dogs were with me.   

Nothing huge.  This time time I am leaving the dogs, the house and someone is taking up residence for the entire time we are gone. I have taken this time as a time to clean out a few things.  One of them is my voice mail.  

As everyone knows, I am terrible about listening to messages.  I just look and call back.  Seems like we can cut to the chase.  Seems like a good thing.  So I took some time and cleared some messages. They are stingy about how many you can have at one time.   I listened to the first few messages on the rest.  I have three or so very very old messages of Mary-E as a child and one or two from Mom.  I have a few from my sibs but the most difficult are the ones from our Dad..... That voice, that bit of humor and whimsy, that call made to point fun at some sort of item in the news, a serious point to be discussed about a legal issue or just to say hello.  I could not bring myself to listen.  Just hearing the voice, for a few minutes was enough.  For now.

There has been lots of discussion about the new Cancer Kid movie coming out this summer. It seems to pop up everywhere.  I made the compromise and watched 50/50. Someone needs to tell the peeps in Hollywood that when the hair goes, it also means the eyebrows and the lashes....  I would give it a 4 out of 10.  Love the people. Story written by someone with a book and no real cancer world experience.

So I The Fault is in the Stars appears again.  Yes again today.  I protest. I look at another web page.  There is a secret Facebook page for moms and caregivers only. Have to be added, have to be approved. Have to know the secret handshake and have the correct browser.  They have teamed up with another organization that listed some of there projects... 

I hit a link and found this...
www.youtube.com/watch?v=5iTImZGOtc4

This is real. This does have the real ending. Hollywood should make this into a movie.  

Now we are off for a bit of an adventure....  



Seattle to?????

Sunday, May 04, 2014

Two Worlds

So there is a big movie coming out this summer. "The Fault is in Our Stars".  Young adults, cancer, love, death. 

Cancer just keeps popping up and I feel like I am playing gofer game.  We see it all around us.
You can't ever win. They are everywhere and there are more and more of them coming.  I am sure the Hem/Onc docs and researchers feel the same. Just as they solve one problem, another pops up.  No matter how prepared you are, they keep coming back.  Never ending. 

As many many know a number of us are working on founding a Non-Profit named the Wishing Rock Project.  It is mixed group.  Friends, relatives, neighbors, Cancer Moms.  All working to make a connection to the new families.  I was meeting with one of the moms tomorrow.  I received a message from her apologizing she could not meet.  Scans were done last week and they found cancer again.  Again. Again. Oh Crap.... Again. 

It took my breath away.  A moment of terror.  Then I realized I need to send one of the Wishing Rock Bags to her.  Sometimes it is all you can do.  Reach out, let them know you are listening and try to give them a place to leave a bit of the pain and fear and endless anxiety. 

Here is a family trying to regain traction in the "real world".  Moving forward, working on catching up and trying not to look back too much.  Starting to think it was over.  And then....  It has been my experience that no matter how much time has passed and no matter how good things appear a bit of you remains in Cancer World.  Just a tiny finger or a wrinkle or a bit of gray hair.  It remains.  It is stretchy and can seem to be a very very very long tether but a tether it is. No matter what, it is there. It may be invisible to the "real world" eye but it is there.  

Given this is our dual reality, we are going to pull at the tether a bit.  I am amazed that ME is willing to go the distance.  She was not even willing to go to Eugene until Dr. Belle promised to be there, just in case.  Some how she is at a place she is willing to test the tether.  We are headed to places with no doctors, no internet and no good coffee.  It will be a challenge. We are taking a book to read on the road.  I hope to be able to needlepoint for a few days. 

We both understand this is only a temporary escape but we are going to find a bit of respite. A bit of joy, a bit of adventure and a bit of fun.  We expect to find these guys. 
Promise, I am leaving the mallet home. 



Friday, May 02, 2014

I Can't seem to walk into the fire anymore....

I just don't have it in me anymore.  I don't have the strength or the will to really be of help to people in legal battles.  I thought I might be able to do a little.  I was wrong.  I was so so wrong.  

Making a phone call on behalf of someone is hard.  I don't think I can handle the disappointment. The expectations that things should be fair. I have lost my touch.  

I always was a tenuous lawyer at best.  I never was a Lawyer.  You know one of those people that always wears a tie and suit and never leave the office.  They are there because they are Lawyers.   I think it is sort of like the military.  They want you young.  Mold-able. Some insecure in their selves so they cloak their insecurity with Lawyer Ness....  

Now maybe it is not fair. I do pull out the lawyer sometimes.  It is always a judgement call. Always a wonder if it is a good idea.  We lawyers don't have the best reputation and we know how to make people miserable.  Maybe that is what is missing from me.  I just don't have it in me any more. 

My entire being has changed. I move in a different reality.  You see me, you talk to me, you do things with me but I am really not attached to the world in the same way. 

I spent the morning with a Mom in the Chicago area with a child headed to transplant.  They might be denied because of a myriad of reasons.  Oops, no life saving procedure for you.  Go back start again.  Sorry. 

I so dreaded transplant.  I have seen Elise R. go through it and knew of its horrors.  It was so bad.  I never saw anyone have a "easy" time. I was horrified when they told us she was headed to transplant. I tried to talk them out of it.  I didn't want the double lumen. I didn't want to have to find a donor. I didn't want.... and then.

I couldn't wait.  Once I knew it was coming, I was ready. Let's do this. Lets get going. What do you mean it takes months? What is the hold up?  What do you mean she might not be in remission? .007 looks pretty good to me. Why do we have to do all those tests AGAIN  We just did them!  Oh, you mean if things aren't perfect we might not go to transplant?  Oh, I want my transplant and I want it now....

The old, wanting what you can't have.

Would I have let her sign the papers if I had known what I know now?  I would because she has finally turned the corner.  If she was one of the many that have died?  I don't know.  I really don't know.  

We all make the best decisions we can at the moment it has to be made. Then we have to walk the path chosen.  
Conversation goes this way:

I don't know how to best make a decision?
But it has to be made.
What ever decision is made, is the right one. 

Thursday, May 01, 2014

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.