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.