Now What?

so... I feel like I have been in the pressure cooker for two years.  Now we are really really sort of done with Cancer World.  But I know, that you can never know for sure.

September 28 2010 was when Cancer went Super Nova.  I know it is just superstition and silly but when you have the world implode for the second time, it makes you wonder and worry in a different way.  She will be seen at Sacred Heart in Spokane. In fact, I will be with her the day she meets Dr. Judy Fleminheimer (sic) and Dr. Carpenter.  We will be all together, again in Spokane.  Old home week.  This time will be better, I am sure.  I dream of a continued taper, hair growing  back where it should grow and lots and lots of need for me to find her smaller jeans.

Sort of makes my heart go to a deep dark place, a place of fear and trepidation.  I can't help but be worried.  Should I open the door from whence I hear the weird scratchy sound emanating?  They always walk toward the scary noise and open the door in the movies.  But from my point of view, I wonder if I can ever keep the door shut.  I have learned over the years, knowing is better than wondering. 

Anyway, she has been to a few classes, feels totally overwhelmed and out of control but then the week-end is coming and the world will return to it's axis once again.  She feels like she is in an altered Universe.  She knows where she is headed and will continue on the route.

I, on the other hand, feel a bit out of whack.  There has been this constant scream and chatter in my head for two years.  My adrenal glands have been pumping out enough adrenalin to flood Bangladesh.  All of that is gone.  It is quiet.  No chattering.  My ears are still ringing like they do after a rock concert.  My body feels lighter and strangely quiet.  It is an odd, odd feeling and experience. 

I make lists of things to do and not do.  I actually have agreed to do something later this week.  I realize I can do that and not worry about what might stop my going.  It is going to be a learning process.

The world kept spinning while I was in my private hell.  Who knew?

 

We are finally in our Respective Places

She has a class today.  I have a basement full of laundry.

I am going to let it sit for another day and make a last gasp at some relaxation.  I feel a bit of the world passing me by in a new way.

I am not dealing with a cancer child (less then 24 hours).  I don't have a bit trial this week.  I am not starting school.  The universe has opened a tiny hole for me to explore.  A place I have not been for many many moons.

I don't know what I am going to do.  I don't have a plan other than I am going to make a plan.  I am going to focus on simple things like going to the eye doctor, seeing my dentist, weeding the garden, taking care of business.  That should take two days. 

Instead of getting myself "busy"  I am going to sit for a bit, map out a plan and walk through some doors, knock on some doors, spread my tentacles into the universe and reconnect to the right place.

But for today, I am going to pack the dogs, wake up Michelle and drive to Camano Island.  Tucker has been wanted to eat some seaweed.

So that is the plan for today. 

Here are the new Digs

This is her room. More pictures after the other girls arrive.   

Okay GOD and UNIVERSE

You are on Notice.   I'm leaving you in charge of Mary-Elizabeth.  She is in your care.  Don't fail me again!!!

Sitting on the Porch drinking Coffee

So Meb is sleeping. She is almost settled into her apartment.  We saw the accommodation people.  They were a bit scared of me for no good reason.   Then we met with the head of the health center.  No doctor will ever send her away telling her to go sleep.  We have hit every retail facility in the Spokane Valley and have another full day ahead of us.    

Sort of calm. A few rip tides. Some sneaker waves but all-in-all it is good.  

Back to Gonzaga

Need I say More!!

 

It was not my Fault

Okay, so I don't really love her as much as I could.
I have told on her several times.
I do play with her on occasion and I am truly upset when she touches MY toys.
I am very protective of her. 
If another dog sniffs her butt, I intervene. 
I try very hard to keep other dogs from playing too hard and rough with her. 
So when the housekeepers left the food waste in a place that Lily could get into it, I told on her.  I kept trying to get Mary-Elizabeth to pay attention.

I have been told I need to be more like Lassie.  I don't know Lassie and I certainly am not a Collie.  

I tried to tell Mom Lily was fine. I even jumped on the box where Lily was sleeping.  I was the one that barked at the box and made Mom open it.  I am often scolded and Bad Dogged when I bark so I kept it low key. 

Lily was fine. I am fine.

I am sad and upset right now because I can tell my true love Mary-Elizabeth is leaving.  She has the big suitcases out.  She keeps telling me it is okay but I have seen this before.  It is a bad sign.  I am doing everything I can to keep her in the house but she is quick.  She can escape me because I am only a 25lb dog.  I have been extra barky and I hope people understand.  It is a hard time. 

As always I will survive.  I have been told I have to wait to something called Thanksgiving.  I can wait.!!!

People are just Stupid....

Yes, people are not very bright. 

I watched yesterday when the people all were running around.  From what I understand, they were confused about what time a wedding was supposed to start. 

Sally was sure it was 7:00.  She was having a great afternoon with her friend Anne getting ready.  All of a sudden Margaret came rushing in and announced the start time was 5:30.....  Crap......  words came rushing out of Sally's mouth in unusual rapidity.

They left the back door open.  I like when they do that.  I can leave and life is good.  I have lots to guard in the back yard and the front.  Despite my best efforts, things come into the yard.  The squirrels, the birds, the cats.  The front is worse,  dogs drag their people across the front of the house all the time.  They even have been known to pee on occasion.   The horror....  Okay. Back to yesterday.

Well Tucker and I hung out.  No food. No dinner, no supervision.  It was apparent we had been abandoned.  Maybe forever. Maybe we would never have our humans back again.  They were going to wedding and heaven only knows what that might be.  Maybe it was the last time they were going to be seen.

Tucker and I did the best we could.  We barked, we protected, we were on guard.  We slept.  We do a lot of that.  My favorite place to sleep is on Mommy's bed.  It has down pillows and comforters.  Prime sleeping place.  Tucker has to sleep in the living room because he is the oldest and I need my beauty sleep.

I headed into the bedroom and jumped up on the stool.  Only this time, it had the lid up.  I went in and the lid slammed shut.  

This was new in some ways, but not that new.  Since I was a puppy, people have put me in small confined spaces.  Sort of like an enclosed sleep cave.  Dark, cozy, a bit uncomfortable.  I went to sleep.


Heck I was doing just fine when people came home. They called me.  There was a fair amount of noise that went on for a couple of hours.  It has been my experience they find me eventually.  They asked Tucker where I was and then went to bed after driving around, listing me as missing and something about Craigslist.   Perhaps I should have said something, barked, whined but I was fine.

I settled in for the night.  But about 6:00 I wanted a drink and to go outside.  It had been about 8+ hours.  Tucker knew where I was and tried to wake up Sally.  She was having none of it.  Finally about 6:30 Sally figured it out.  I made some rustling noise, hate to bark too early she can be a bit of a grump.

She opened the box and squealed in joy. You would have thought I was lost or something!!!.

All I wanted was to go out and drink some water.  I also wanted to remind everyone I had not been fed last night!!!

 

 

 

We are all waiting....

For something. 

It is results, the next scan, the next blood draw, the next e-mail, text, season to start, school to start, phone to ring.  It is always something. 

Some are better at waiting than others.  Some hit the wheel of the car at the intersection.  Some are snarcky with their mother because they are waiting to return to school. Some are waiting for friends to come visit or leave. 

I have found lots of life is lots of wasted time if you don't multi-task during waiting. I have spent much of my waiting time to work on needlepoints, a 1001 cranes, lots of letters.  Lots of seasons of the Big Bang.

Sometimes it is good to just sit with the waiting and make friends with her.  Just be mindful of how you are feeling.  Just sit and be with Waiting. Be ready for nothing, something or often times, mixed results.  It is often not enough to wait.  It is often not enough to pray or to ponder and try and figure out how to fix things.  Some things are just out of your hands.

My daughter often says I am not patient. She is a keen observer.  I am not patient.  I am very good at looking a situation over, evaluating it and getting ready to move on.  I am most often pushing and pulling rather then waiting. 

I work every day on just being mindful of what needs to happen, knowing stuff does not happen and just being here and now. 

I will try again today.

 

One Hip giving out and a fall can be overcome

Big rehearsal for tonight's wedding. 
Big fall on the cobble stones.
Gauze, triple antibiotic cream applied,
Dinner served
Life righted itself.
Child to the Four Seasons to spend the night with the bride,
2:48a.m. text asking that I start Grampa John's sour dough.
Hours counting down to the wedding.

 

Life is good.

Oh Dear...

Cancer World is full of sick children and adults.  It is a place of good things and many bad things.  It is most of all a place of Sadness for many.  Those who have cancer and those that know those with cancer.  Some win a reprieve only to be battered later.  People really really only want to hear the happy stuff. 

Today is not about us directly.  It is about someone we love.  

Alistaire had AML  she relapsed and then had a bone marrow transplant.  They just found .06 % of bad cells in her bone marrow.  It is exhausting to know what this family has gone through.  It is so hard to know this is back.   Recently Alistaire asked her mom when she was going to be a big girl. 

I have know words but Jai seems to have words left to let us look at Cancer World in a deeply meaningful way. 

http://conglomerationofjoy.com/2013/08/22/pummel/

I declare we are unstoppable but a bit more humble.

We go like gangbusters.  ( I have to look up the entomology of that word.) We are unstoppable.   Give us a challenge and we shall overcome it.

I think about what has happened and what is ahead and It makes me have a headache.  I never get headaches but I do today.  I don't know if I have the energy to finish the first leg of what is turning into a Super Tri-Atholon.  Who thought running 345 miles, swimming the Atlantic Ocean in one day and biking from the North Pole to the South Pole was a good idea? 

My mom said I have to keep it together but sometimes the universe should be better a cooperating with me.  I found a really great cheap cruise from Vancouver to San Diego. I could get a train ticket, and have an airline ticket I did not use this summer because of Mom's surgery.  It was going to a great little get-a-way for less than $500.00.

It was sold out before I had my ducks in a row.  Another lesson in the need to jump when the opportunity arises.  So much has been going on for so long.  I thought a few days on the water would be good for my soul. 

I have gone before on these little cruises.  I spend most of my time out on the deck with a book and my thoughts.  It is so wonderful.  I can be with other people but the book and blanket is a great people barrier.  No one needs anything or wants anything or has a crisis or a problem or an appointment scheduled.   It is just time, I am a water person.  Water is what re-invigorates me. That is what I draw strength from when I am low on energy.  In the old days I could get on a ferry and just ride back and forth until my batteries were charged.  Now they make you get off, sort of breaks the mood. 

Looking at water is not enough.  I have to be on it, touch it, be close enough to smell it and feel it.  I have to hear it and be overwhelmed by it. 

My need for big water is much more pronounced now.  Maybe it was the way this hair thing happened.  It was very difficult to enter, for even a moment, the world of treatment failure.  Our skin that protects us and helps us move through the morass that is cancer world, is so so thin.  It is easily burned and bumped and scrapped and is not doing much of a job to keep us safe.

We will patch our weak barrier.  We will find the strength to keep on keeping on and then we will make it.  Just a lull, our blood sugar is low, we are dehydrated and the second leg of our run is ahead of us. 

Off to find some ice cream, almost as good as Water.


  

You Just Never Fracking Know..

Plan:

Go see Jerry and get hairs cut.
See Linsey to take care of the other unwanted hair. 
Jane to have hair cut.
Mary-Elizabeth to have a real hair cut.  Last couple have been just trims.


Seemed like such a simple pleasant outing.  Ha.... Got you. 
Jerry found a spot on the back of her head the size of a large apricot with no hair.  Round, bald.  I found it and almost threw up.

Now I know it is just hair.  It is just hair.  It is just hair.  My child is going to live. She is not facing another transplant or another relapse.  she is getting better every day. She is doing normal things she is great.  BUT

Her hair is a sign to her she is getting better. It is a lovely color and a wonderful texture and it growing like crazy and she feels normal in it.

She has to live with her chipmunk cheeks, endless huge stretch marks on her skin, deterioration of her large joints, a dead bone, problems with kidney and liver function.  Shall I go ON....

 I look at it and it almost makes me throw up.  What a shock. How did that happen!!! Must be my fault like most of the world's problems. Call Clinic, get appointment for next day.  Hate when it is next day, in the morning and not a week away.  I don't care how much they love us, this is never good.

Someone looks at it and announces Radiation SPot.  The lovely permanent scar left somewhere on your head where they zapped the hell out of you with radiation.  (Now remember, the effects of radiation don't all show themselves for 3 to 5 years post radiation. So we all know "stuff" can happen and often does.) 

I thought about that and didn't buy it.  It was a new event. Something had happened that was new or different.  So what was new?  What has changed?  PREDNISON taper.  The drug addicted Girls were being sneaky about asking for more.  They were not working on the stomach or the skin or the liver, no, they are going for something different and are being sneaky about it.   Hate sneaky... Just come out and say it or do it.  Don't secretly make a bunch of hair fall out!!!!!!!!!!!!!!!!!!!!

So we go. We see Dr. Jess Pollard.  She looks and she says, "it's not fungal and it is not radiation spot.  It is GVHD.  I am calling Dr. Carpenter."  I suggested she remind him that if I fail to receive the answers I want, I will be taking back Jam.  

She catches up with us and pronounces:  End of taper until Mary-E sees Dr. Carpenter at the end of September.   My poor beleaguered child just cries.  She just cries. She is at the end of it all.  Why can't she get a break.  She has done nothing to the universe but roll with the punches and do what they ask and take her meds and keep track of every bit of food and drink and everything on her skin and the list goes on. 

She is packed, she is geared up, she is ready she is sitting on the launching pad and wants to go.  The count down has begun. 

My reaction..... I'm just angry.  I am so fed up with all of it.  I am busy planning my re-entry to work.  Meetings scheduled, people to call listed, contacts to pursue, lunches to schedule, I am ready to return to work.  This just draws me up short.  It is the universe not wanting to let go of us.  I think we should be done we have paid our dues.

I start to rehearse how I explain I am not going to be a reliable person.  How I am going to need some flexibility, and be able to work remotely.  How I am experienced at having to drop everything and switch rolls a dozen times... It just makes me so mad. 

Deep deep breaths.... I need to take deep deep breaths.  

Dr. Carpenter did decide to continue the taper.... He has bonded with Last of the Berry Jam.  He knows how bad it is it be Jamless....

So end of the long and complicated story.  The taper continues, a new hair goo has to be put on and sit for 4 hours every three days. We have to see if SS (shiny spot) grows. 

We both can live with that and it is expected we will go on our merry way happily rejoicing I the fact she has not relapsed again, or her leg has fallen off or her third eye has not emerged.  No for awhile we will be angry and disappointed and frustrated and scared, mostly scared.  Did I mention scared. 

Hey I finally was given Chickens!!!!

 

I am from Idaho.... and it is burning up

again!!!!

It is so weird to see nature re-shape places you know and love.  When I hear of fires in these oddly beautiful places it have a physical reaction. 

 I was born in Idaho, was raised all over the country and then returned as an adult to teach and then learn to be a lawyer.  I am "from" Idaho in many ways but mostly in my love for its beauty. 

It took me lots of year to fall in love with the high desert.  To look out over the dry sagebrush covered hills and wonder at the majesty of the antelope or coyote or the jack rabbits or the burrowing owls.  It took me a long time to bond with it. 

It is breaking my heart to watch it burn. Lots are worried about the houses.  I worry about them but also the rest of what makes it a place to put the houses.  The gently sculpted hills covered with the remains of the volcanic explosions sage brush, dozens and dozens of different kinds of sage brush. 

It is now burning the childhood hills of my mom.  She roamed the hills hunting for rattle snakes and other such treasures.  Grampa hunted for gold and deer and elk and fish and time with his family.  

While I look on and wonder and ask why, I know fire is part of what makes it re-grow and regenerate.  It is sort of like loping off parts of a tree.  It will come back with great vigor. 

Here is to the sage covered hills of Idaho.

Working on Normal... But failing in weird ways.

Universe is all out of whack.  We keep putting on step in front of the other but still it is all weird.  It seems the same, we are doing the same sort of things, we are making the efforts but still..... off.

Mary-E is getting ready for school.  This is more like the first time she went.  We are old hat at this now but still it is different.  Sort of Alternate Universe type off.  She has packed the "stuff" the Kitchen Stuff, the bathroom stuff, the bedroom stuff and then there is the "Stuff". 

The special "stuff".  The creams, the meds, the small set of drawers to keep it all organized.  Granted she is down to only one page of meds but they are powerful and magical and major potions.  They come with pages of instructions and lots and lots of concerns.  It takes a team of specialists to handle them.  When she had a cough and we had only "citrus" flavored cough drops, it took three pharmacists to determine if she could take them because she can't have any Grapefruit. 

When we get to Spokane we have bunch of appointments.  Dream, Doctors, and so forth and so on.... 

I am so reminded of the Ray Bradbury short story.  The man goes back in time to hunt a dinosaur.  He steps off the path and accidentally kills a butterfly.  He returns and the world is slightly off. 

We are slightly off.  Best Example.  My car is parked in a clean garage.....  

And we think we have problems.

http://www.inciweb.org/state/13/

If you click on this link you can explore the new and improved fires in Idaho. 

We need to pray to the rain gods and soon.

Sometimes you do have to just let the Universe Play with you for awhile.

It is good that sometimes the pencil pushers don't win.  That is what happened with Mary-E.

For several months we had worked on making sure Judy Flumenhiger (not her name but it is such a fun one that I will be using variations on a theme for the next year.) took over her care during her Spokane time.  Dr. Judy was the one that helped us during the relapse discover and getting her back to Seattle in the nice plane.  She was the obvious choice in Spokane. 

We would have found a "regular" doctor  for her if she was not on 16 complicated medications, still tapering and not "there yet".  I was surprised to hear they wanted her to move all her doctors and change medical systems three weeks before she returned to college.   She does not need a doctor she needs and educated team.

They include:
1. Endocrinologist
2. Hematologist
3. Orthopedic back guy
4. Oncologist
5. Gastroenterologist
6. Ophthalmologist

and several other "gists"

Nightmare, Nightmare, Nightmare.

But.... sometimes if you wait and let the system work and spread enough jam around a phone call comes:

This is Dr. Hadelin( Doctor Tacrolomis). We think it is a very bad idea for you to get voted off the Island right now. We were able to get you approved for another year at Children's.  We will spend this next year making sure you find the right doctors and educate them.

Note to Self:

Prayers answered.
Breathing helps.
There is a God and I might take him out of the dog house soon.

General Doctor Confusion.

So Children's wants to kick Mary-Elizabeth to the adult world.  Seems like a huge and awful scary step.  More for me than for her.  I love the way Children's coordinates everything and adult world is a crazy awful mess.  They don't sedate for bone marrows or IT's they don't even give adults Ports  and Hickmans.  I think it is because adult cancer is often caused by adult choices and the insurance companies want to make adults suffer.  "You smoked, you don't get to have an easy time with cancer. It is your fault you lived so long.  Die or suffer it is your choice." 

To complicate matters she is returning to college.  Certain types of doctors are not in Spokane or of the same caliber as the Seattle bunch.  But until  you have tried to see an endocrinologist or schedule an appointment for an adult hematologist you don't understand the problems.  As I said, Adult medicine is a drag.  To make it worse, the new doctors have no idea what has happened to her or understand what is involved.  Nightmare....

Okay Sally Breath.... just breath. Lots of people have to return to their communities and educate the general medical population.  Someone is Spokane will be able to figure it out.  Someone will write the prescriptions and some pharmacy will not screw up the names.  Evidently one normal pharmacy dispensed Tacrolimus instead of Sirolimus because they sounded the same.

Breath....

10th Year begins.

10th year begins.  10 years ago today I received a call at about this time from my friend Judy.

"Sally Children's Hospital is trying to get ahold of you." What I did not realize then, that I do now, is that not only did were they trying to get ahold of me.  They were never ever letting go.

We had entered Cancer World.  9 full years of being here and no one has shown me any of the escape routes.  We just wait and wait and watch and ask and beg and wonder.  We are finally just resigned to this place in our life. 

We are not dwelling on it, we are not focused on it. We are just moving through another part of the maze that is our world.  Mary-E continues to pack and prepare for her return to Campus.  She continues to worry and fret and wonder how it will go. She imagines horrible things and fun things and normal things. 

I wonder how it will go.  It is weird to be sending her back to school and out of my life on to the road of independence.  While most my peers are settled into daughterless lives and the new relationship, my child was well on her way to an adult life and then was rocketed back to dependence and childhood.

When your child is in treatment, they revert.  There are days they are 2 years old.  Cancer strips away the years of personal growth and maturity.  It takes your child back to the beginning and you begin again.  A bone marrow transplant is a new life that must grow and develop and it is a new beginning. 

So ten years in we do it again.  We start again. I let go, she fights to go but wants to stay. I push and then I grab.  It is a very interesting dance.  We have done it before, we will do it again.

Tunnel Sighted

WE are almost there.  It helps when a load goes to the dump, several to Good Will.  Stuff keeps falling out of the cupboards and at the back of drawers.  Decisions still have to be made but it is getting there. 

Two young guys with strong backs can make a difference in a hurry. Two good painters can clean up a 7 rooms in a flash.  Three lawn guys can make the back yard look wonderful in a flurry.

All good.  Now if I could just find a Fitbit charger life would be good.  It seems to be hiding. 

I am heading to Mom's for another look.

Thing I should have known

1.  Every Family Fights:
There is always something.  Some issues people need to work through.  Often the real issue is with a parent and the parent is gone. So the issues rear their ugly heads and the anger and disappointment and frustration are focused in another direction.  IE Sally is a bad person and awful Sister episodes in this process.  

2.  Be careful you can say things to each other that will forever damage your relationships.  Especially if one party has bottled up all the frustrations and anger for years and even decades.  

3.  There is always more stuff hiding in the corners but the 9 gold coins and the 1 carat ring are not anywhere to be found.

4.  Be prepared to find your dad's shoes. And to cry just a little bit.  

5.  Be very clear about what you want.  If you ask for the Walnut Table that holds the Peacock lamp.  Make sure you use the words " and the Lamp".  Then if you see someone packing it and taking it it is always best to say something and not just take the Finial.  Finials are easily replaced.  Relationships are harder.  

6.  It is okay to snarl at the guy at the yard sale when he offers 25 cents for a 25.00 item.   Just as it is okay to sell the WWI lead solders to a small boy for a 1.00.  
7.  Be prepared to feel odd about leaving your mom at a new home. Be pleasantly surprised she quickly finds new friends and has no time for you.  
8. Be prepared to look down the empty hallway at the former family home and realize it is now just a house. Enough of your life stuff is gone and all of a sudden it is not a home but a place with walls that need paint.  
9.  Home is more than walls and books and a favorite coffee cup but I am not sure what it is exactly
10. Take a few minutes to stop and read your Great Grandmother's letters,  she has wisdom to part.   

Contrary to popular belief We did not just dump her

Yesterday was the day. We loaded up some cloths and stuff (coffee pots) and headed over.  We are not done but it is looking great.   We have the phones working the paper changed and the mail.  We went to dinner with 3 hostess residents.  All on her floor.  They announced it was the best.   Mom was told she could cook bacon any time she wanted.

I called this AM well after 6 and she was sleeping.  I think that says it all.

24 hours before Dorm Check in

Pearl Ann and EllieMae time to let go a bit.

Girls seem to be doing fine.  There are few bumps and lots of times with clear skin.  Stomach gets a bit hinky but then who knows if it is my cooking or steroid starved girls.  They need to get a grip.  They need to let Mary-Elizabeth take them to college. 

They have hung around and fussed and been fussed over.  It is time for them to put on their big girl panties and face the real world.  No more spending time with Dreamy Doctor Carpenter or the ever blushing Dr. Hadlen.  No more special trips to the Emergency room for horrible sticking of our veins and days in the hospital.  It is time to stop being afraid and worried and vexed all the time.

Today was a 25 day.  Only 5 milligrams of steroids and you have had lots more than anyone else.  It is time to turn out and face the real world.  Just think of all the fun you get to have. 

You are spending great time with Grandma Mary.  She loves watching Big Bang with you.  She loves talking in the late evenings when she is up and planning projects.  You are spending time at the Garage Sale. This is something you need to learn about.  It is tradition in our family for you to want to buy things to sell at a later date.  Hey, Grampa John made a great purchase when he came home with a Gas Lamp.  I am sure it will come in handy sometime soon.  I am sure you are also puzzled by the beaver muffs.  Yes, they were used by ladies during the winter.  120 years ago.  They might come back in style. You can sell an old rusty spoon for 25 cents and make someones day. 

And didn't you have fun when you loaded up a box of vintage bottles for the young women having a wedding next year?  She will have enough "vases" for her reception.  Special one's will be kept, other's given away and then new memories will be made. 

What about the young girl that sells Grandma Mary tamale's appeared. We showed you how it was done.  Grandma Mary has been buying them hot from the truck for years.  They are a great Saturday treat.  How cool was it that a neighbor saw us buying them, arranged for them to be dropped off at her home and then the lady's from the sale bought some also.  Everyone received cards and numbers and that relationship is firmly established.

College will be scary but we will have a talk before that time.  You will be well prepared.  I know it is new and you are very much on guard.  You are doing a great job.  You have kept Mary-E healthy for the most part and even then it was not your fault she was sick.  I know you didn't understand how much I needed trip to New York.  It was practice for when we won't be together all the time.  Moms need time away. 

So girls things are great.  No great illnesses around and we are all being really careful.  You can relax.  You can do your job without the steroids.  you are strong and healthy and ready to be the immune system you were meant to be.  You don't have to be too wary of the sun or the sand or a dog's lick.  A bit of a rubbing shirt is okay.  M-E is doing more than her part to keep you guys healthy and happy. 

So let's all relax a bit. 

giddy

The only thing we can be today.  Giddy.

Alistaire, our sweet little friend will be able to read the letter I wrote to her.  I sent a letter to be read on her 21st birthday. 

She will be around to read it.

Giddy.  Only word I know that fits this occasion.

Some are closer to the fire than others.

http://conglomerationofjoy.com/author/conglomerationofjoy/

Bambi is cooking.

The three baby crows are feeding themselves and playing in the water.

Dark clouds have gathered in the Seattle skies.

It is all good In our world.  Not so much in Jai's world.  Her daughter is battling cancer for the second time in her young (just turned 3) life.  She did started with something bad AML and then relapsed and cancer went everywhere but she was able to have a bone marrow transplant. 

They did a bone marrow aspiration today.  I am sure as I am writing this there is some sort of news.   News Jai will share with loving grace and bravery tomorrow.  I will post it here as soon as I know anything. 

As cancer Mom's we all see the others step closer to the fire, some touch the flames and run, some stand strong and wait, some are consumed, some are purified, some are destroyed.  We don't usually spend lots of time in the "hot zone" but we know the pain and fear that goes with that journey.

We all wait with Jai and Alistaire and Sten and Solve...  We wait, we offer prayers and  lite candles.  The light of the fire is warming and soothing to some extent, until you get too close.

Time

And calm moments.  Time to catch my breath. Time to do laundry, all steps. Time to dig through pictures and letters and realize I can throw some away. 

Time.

What a gift.

For once in a very long long time we are just waiting for only good things.  Taper continues and seems to be going okay. Sometimes little spots pop up and the good cream is slathered on and it all goes away.   Sometimes the stomach is unhappy or now days it might just be too many bing cherries. 

We are in a very quiet place.  Sort of pacing and waiting and gearing up for return to School and Job Hunting and settling mom in her new place.

Time a gift of good things.

Girls are happy so we are happy.

Post Transplant, Post Cancer World, PTSC

Everyone changes during the process.  I have been through the mill once and then evidently did not learn my lessons and before I caught my breath, was forced through again.  This time it was the secret, deep dark never to ever recover world of Transplant.

It has been nine years.  Almost a decade. Longer then a president serves.  Longer then a moon mission.  Maybe the Hubble has been in space longer.  I feel older than the Great Wall of China, tired and chipped and so strung out I can never be properly repaired.

I just don't know how many "one more things" I can take.  I have my life and then I have the things I really need to do to get on with the next step of my life. Every time I try to head back in that direction I am hit full force with the big red stop sign. 

I try to do this with a sense of humor and with some grace and class and some humanity.  I whine a bunch here but I figure this is optional, sort of like the info-mercial on your TV.  Never have to stop and see what miracle thing will make the world a better place. 

I never asked for this path.  I certainly never asked for it twice.  It does not matter when it happens it happens.  Once, twice, three times.  It is just  as bad. 

 I was in the parking lot yesterday while we were picking up meds and I saw a family with their green child.  He had chubby steroid cheeks and a feeding tube.  They were going out on pass. Nice family, worried mom, strong appearing father, scared brother.  It is so hard to see.  The child still had some hair so you know this is just a start for them.  They are going on a long long journey with an uncertain end. 

As I think back I never really was able to leave it "behind".  While Cancer slipped into the recesses of my mind it could be called forward like an eager dog receiving a treat.  This time we are really really done in a different way than before.

As Mary-E works through her taper we are very like the horse at the race starting gate.  We are ready for this to be behind us. For real this time. It is different. She has had a transplant. They really really really killed her old cells. It has been more than a year and no relapse.  We are done.  I thought this tree said it best. 

Strong, tall and still growing, only in a different direction.

Wondering...

People make comments like" Isn't great to be retired". Aren't you glad you don't have to work?  Isn't it great that you have had this down time?" 

NO, NO and NO.  Because the reason I am no longer a lawyer and no longer have a place to return to and have gone back to school in order to update and tweak my skill set is because:  MARY-ELIZABETH HAD A RELAPSE AND SHE HAD TO HAVE A TRANSPLANT AND SHE IS NOT BETTER YET.

She is better than she was but she is not there yet.  Granted, we have turned a big corner.  She is planning to go back to school.  She is planning to continue her course of study.  She is planning to drink a little, play a little, she is planning, I am planning and I am planning and I am expecting. 

I also know, in my heart of hearts, plans change.  They change suddenly, completely and send you spinning into another universe with the drop of a hat. A moment of certainty can slip away like a bit of fog on a sunny morning.

So, I am not focusing on that possibility but I know it is there.  It does not stop me from looking forward.  I don't just charge into things the way I used to and don't just assume everything will work out.  I have to be much more careful.  I have to really figure things out. 

I don't recognize this new and more subdued person.  But I am getting used to her. She has learned how close death can be and is. She has had way too many moments in the last two years when a child slipped away. A child she has known. A family she has met and helped and encouraged and held in her heart while the worst events of their life pass.  A brush with death makes you take notice of life.  Watching the process with many many children you have known and loved makes you wonder. Wonder what life is about and whether you are doing the important things in life.

Are you doing something every day and touching a life in a positive way? If you were to leave the world would it make a hole in someone's life? Would you be missed? in a good way?  Have you done something to make someone smile? Did you take a moment and talk with a person who looked down and out?  Did you buy a Real Change newspaper? (Paper the homeless sell in Seattle that we never read but liberals buy to do a bit for someone in need.) Will your dog's last memory be of a really great walk? Will your flowers be watered? Will people know how much you loved and valued them?  Will those you leave behind have great stories to tell?  Remember when..... stories?.  Will your pictures have names on the back of them so your children will know who you were standing by?  

Today I was a Starbucks in the U Village.  An older gent was grabbing the empty half and half at the same time. We struck up a conversation and I later joined him at his table.  I asked a bunch of questions and discovered he was English, born in Peru, educated at St. Andrews and had been a researcher at the Pacific Cancer Center for most of his career.  As a baby he napped in the lap of Eleanor Roosevelt while sharing a trip from Peru to England.  Evidently Eleanor told Donald's mom her husband was going to be President one day.  His mom thought she was a bit off.  

Time for re-entry

Laundry is done. Last of the dishes have been put in the dish washer.  Floors are being swept and dry mopped. The bucket of sand is going back to the ocean.   Such a restorative time.   My thoughts and reflections were left in the guest book for all to read.   Let me sum this up.   Wonderful restorative a blessing. Pure grace flowed down the passage and blew away the fears and anxiety and gloom   We will try not to picks it up again as we head back to Seattle

Minus Tides

As we all know I am not normal.  It's okay. I have many lovely other nice qualities.  I am sitting in the worlds most comfy chair in the perfect house with a pot of coffee and an amazing view is Saratoga passage.  No orcas but today is a minus tide.  I'm not sure what that means but I am going to see what is revealed.   There will be lots of ship wrecks and gold and such.

Low tide is at 12:39.

Reflections on a great day....

Sometimes the day is just perfect.  No rushing, no craziness.  Just moving easily from one event and activity to the next.

The dishes are still piled in the sink, laundry is not done, the yard could use some attention but sometimes it is okay to just be.  To be in the event and the place and with those in front of you. 

Mary-Elizabeth had a wonderful birthday.  She fed the masses with wonderful sour dough pancakes.  She had her toes done. Two Tiffany boxes came her way and she returned like a salmon to a party she once called her own.

Fireworks and a tequila cosmos topped her evening. 

What more could have been added.  It was simply grand and simple.

Over and Over she said:  Momma, I made it.  I made it to 21.

She said it with joy and enthusiasm and deep gratitude.  Each time she said it, I wept secretly in that quiet Mom place in the center of my heart. 

Enough of that.. She made it. She is feeling great. She has found her way back to imagining a future for herself. A future.  Who knew how important such an ethereal concept could be...

On

to 22.

21 and Counting

I was going to do all lovely memories of the last 21 years.  Calling Lisa Alhadeff at 7:30.  Maggie going somewhere and then having to come  to Seattle. Mom flying out from Michigan. Special moments.  Special things she has said but most of it has been said before.

Her own statement " I made it to 21"  is enough and sort of says it all.

She is going to Make it to 21....

And is doing it with great grace and aplomb and I am so relieved.

I need to set some new goals.  Not hat getting here was easy.  It was anything but. 

9 years of knowing there was something wrong, finding out what it was, fighting it, thinking it was better only to have it come back with a vengeance and fighting it again. 

It makes me so so sad to think about all that has happened.  I don't need anyone to account for me all the good things that have come out of the process.  I am very very aware of them.  I just need to sit for a bit with the injustice and deep sorrow it has brought to Mary-Elizabeth, me, my whole family, my friends, my clients.  My life, the loss of security, profession, financial resources.  This was certainly not the plan.  

Sometimes I need to sit with it for awhile.  I don't let it happen very often but it is there, hovering in the back ground. Sometimes it makes me want to eat Siberia.  Trying not to do that.  Picking bits of me off leaving it behind. 

I am very pleased that my child will not be getting completely drunk and throwing up on her birthday and that is a great thing...  She has already done enough of that....

 

There is a reason there are Heat Shields on Re-Entry Vehicles.

Cause it is hard. Really hard.  I have realized there are issues when I leave. It is too hard to think about everything not being done.  The garden watered mostly but there is always a little sad plant that is over looked. The sort of plant only a Mom would see.  The crows have water from the rain but they really really like fresh clean water every day.  The mail is piled high but no real gems hiding inside.  It is hard to jump back in.  90+ heat does not help.  Bad sleep.  Knowing we have to get up early early for the SCCA Appointment and then no half and half. 

Okay.  Milk was delivered.  Starbucks had good shots.  The news from Dr. Carpenter was great.  Two months ago he stopped the slower then continental drift taper.  Today we knocked it loose.  It started again. Slow and stead should win this race.  Everyone is very hopeful.  First big test on 3rd.  She will drop her dose of Prednison by 2.5 milligrams.  Shhhhhh, don't wake the baby girls.  They are not supposed to notice.  They  might raise their heads and scream a bit but the first drop should be okay.  

I so hope on the 4th of July Mary-E Awakens with clear happy skin and ready to party all day.  21 years... oh what a blessing.

Hope.  I am working on hope this week. I stuck him in the closet for awhile.  Sometimes hope is hard to deal with when you are not exactly friends.  He had to have a time out.  As a cancer parent you are afraid to hope.... too much out loud.  Sometimes you have to hold hope close to your deep heart chambers. 

Lots of people are supporting your hope and encourage walking hope around on a long rope and saying happy things.  Cancer Parents love happy thoughts.  We remember when we had lots of them.

We are "hoping" to have some certainty of hope soon.  I caught a glimpse of hope today when I saw another fellow patient.  I gasped when I saw had good she looked.  In contrast, I gazed on the chair that held Mario, almost a year ago.  I remember seeing him out of the hospital a couple of weeks after we too had been released.  I was horrified with how he looked.  I realized how far down these kids had been beaten.  Mario did not make back to health.  Cancer beat him.  His parents and family and friends fight on with more determination and certainty. 

That is the thing with hope.  It is good to have in your bag of tricks. It can fill your soul with strength and the ability to fight for things  with power you did not know where possible. It gets you through the worst of it.  The long long days of uncertainty and despair.  It does not die.  It can fade and seem distant but when called upon it can rally like nothing else. 

Hope Springs Eternal......  It doesn't crawl, or creep or step.... it springs.

That is my Hope.