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.

Starting to Transition

Everything is a process.  Only in the movies does a Bone Marrow transplant happen overnight.  I remember an episode from Greys Anatomy where Izzie's child comes in, has leukemia and they harvest Izzies bone marrow and she leaves the hospital in the course of an episode.  Oh, the holes I could drive tanks through on this one...

I could write a diatriabe about matching and the problems with half matches... fact it takes weeks to get the body ready, the stay in the hospital is months....  but I won't.  I will focus on transitions.

I head home on Sunday.  We are going to a shower in Tacoma.  Monday is a long SCCA day and lots of appointmens are scheduled.  This is the big:  Can we start the taper again appointment.  I have been loathed to think about it but bits of the knowledge it is coming up is bugging me. 

I am in Eugene and cann't think about it yet.  It seeps into my sleep.  We go to appointmtnes and they don't know who we are and then they don't give us results and then we wander around and end up in the Red Room of the White House and then I am getting married but I can't find the groom after the ceremony and the hill we climb has a gang with knives and guns and we walk up to them and scream at them to leave us alone and then we find three big dogs....

Don't ask.  No more Snickers for me before bed!!!!!

We are gently moving mom towards her move.  I am pushing MEB to her return to college.  I am working on my resume and looking at Job postings.  We are all in the midst of new and exciting things. 

I need a few days at home.  I need some time in back yard with my fountain and the dog and some quiet long nights of the wonder that is Seattle summers.  Those things that we love help us take the next steps. 

What ever they might lead us....

 Mom when she graduated from highschool  She is the one with the long skirt. 

Things that go Bang in the night...

Sleep, Sleep, deep sleep.  Awake!!!! Has that ever happened to you?  A noise, brings from deep deep dreams.  A noise a feeling something that is not quiet right. Some thing desturbing. 

Leap out of bed, open the door.  There is mom.  Alert, sitting on the floor, walker asque, leaning up against the book case. 

Are you all right Mom?

Yes I am fine.  I just seemed to have tipped over. 

Do you hurt?

Noooo, I am just fine.

Let me think about how we are going to do this.  Let me first find a chair I can put you in when we get you up. 

Mary-Elizabeth Grandma fell, we need to get her back on her feet.
 
Mom don't move.  We have to protect your hip.  You can not twist it, or use it to push yourself up. We are going to lift you and put you in this chair.

Mom, I am going to lift Grandma and you slide the chair under her.   One two three....

Mom do you hurt? How is your hip? How did this happen? What do you think caused this? Do you need to go see the doctor. 

I just went down and I certainly don't need to wake any doctor for something so silly.  Help me back to bed.  Don't bother anyone.  I am just fine. 

It was not until later that it really scared me.  There are so many things that could have happened and didn't.  I am the great believer in managed expectations.  I need to know the worst and work back from there.  I don't need to be surprised and caught unawares.  I like to learn from my experiences and anticipate what is going to happen next and if it did, how it would be handled. 

In this case, Mom is simply not allowed to fall again.  Her couch is getting delivered to her not apartment and she needs to be ready to move there.  She has bridge games to play and great meals to eat and peeps to meet.

No time for falling and complications and all that nonsense.

Family and Connections

We have always had an odd family.  Dad was the baby.  My Grandmother had him when she was 45 years old.  Quite a feat in the 1930's.  I understand she was sure she would soon die and he was raised by his sister to some extent.  As the youngest, he was so very very out of the infighting between the older brothers.  I am not sure of the history of all of that but there were bad feelings and broken relationships. 

As the eldest of the youngest, I knew everyone and was oblivious to the problems between the siblings for years.  Over the years of have picked up bits and pieces but don't really know the whole story. Not that it needs to be told. 

What I did know was that there was a bevy of wonderful older cousins that loved me. My oldest cousin is in her 70's and the others are headed that direction.  Because Dad was 15 years younger then his oldest brother, Little cousin Sally was a great play thing.  I have wonderful memories of time with the "old" cousins.  The younger bunch missed out on lots of time with Grandma and Grandpa.  Our grandparents were always feeble and a bit batty.  Grandma smelled funny to me but she had wonderful soft skin.  She had really really big holes in her ear lobes that scared me.  I asked Dad about them and he told me she had warn heavy earrings and that was why.  To this day I fear dangly earrings.   She did always read me Peter Rabbit.  A story I still love to have read to me.

As I have been digging, I was fortunate to uncover some pretty special things.  One of them being this picture. It is of Cousin Cathy, Judd and maybe Susan.  I hope they remember it and have seen it and can tell me more about it.  Where were they, what was the occasion? The usual.

While we are moving forward in our lives and facing our own "stuff".  It is amazing how much a small photo, found in an old box of letters and pieces of paper can reveal a moment.  A connection to a long lost past.  Not a huge moment, but a significant moment.  A time of joy, childhood, a time in the past when things were just about family filled afternoons.

I fully expect my cousins to let me know what these pictures are all about.  

Love you guys.

Trips to the past...

We have to start writing letters. We have to start keeping journals. We have to start saving old dusty bits of paper.

Some how Grandma Foster was able to keep letters and notes and cards together.  They were in a dusty old box of no real import.  It is quiet an assortment of stuff. But every single little bit is treasure.  A moment in time recited on fading paper with scratchy ink.

I have only read a few, skimmed alot and know it is a treasure chest.  They need to be sorted and copied and preserved. They tell stories of adventures about little parts of every day lives.  Bus trips from Oklahoma City in 1920.  Senior proms and dresses remade.  They are full of menu suggestions, Fried Chicken.... Mashed Potatoes.... Salad made from canned summer foods.

Write a letter to someone you love and know and share something mundane.

AND FOR GOD'S SAKE PUT THE DATE ON IT AND DON'T CUT OFF THE STAMP AND WHEN YOU RECEIVE  IT MAKE SURE IT GETS BACK INTO IT'S ENVELOPE!!!!

Just saying.

Sandwich Generation

Sometimes I wonder where the names come from that work their ways into our lives.  One hears the word and then wonders when and whence it comes from. (never end a sentence with a preposition).

The middle part of the sandwich has been around a long long time.  It is anyone that has parents and child

ren.  I figured I had escaped being in the middle because Mary-Elizabeth was launched.  I always knew there would be some help need for Mom and Dad but I was not prepared for being in the middle.

In all fairness, I have never really had to do both at the same time. Dad exited in such a way that did not require that awful waiting around for someone to die stuff.  He just left. 

Mom has had her challenges but I was not aware for a lot of reasons. I didn't
t find out until Christmas time.  She was pretty stubborn about going to see the doctor.  She literally limped along until we all gathered in April.  Belle loudly stated:  "Mom you don't have a pulled muscle, you need an MRI."  That freaked mom out and she went to the doctor.  The doctor didn't even look at her but called the hip doc and here we are. 

She is doing great and working back to her old self. There are these awful days when her legs ache and twitch and she can't sleep  We walk and pace and lay down and do it all over again.  There does not seem to be any magic way it all works best. 

On the other side of my life is Mary-E.  She is working on lists of stuff to do when we get home.  We are going to spend some time at the island home of some friends and soon she will start packing for the beach.  We don't really have any plans for the 4th.  There is one plan regarding a bar and pancakes.   I better check and see if they are open on the 4th....

Mary-E is 21 years this year.  Amazing.  Really Amazing.  What she has faced and handled is a post for another day.

Better get home and hope Mom has fallen asleep.  Up at 4:30 am for a trip to the train. Then some coffee and some reading of some papers and then..... more sorting and more discarding and more......

Growth while revisiting the past.

Growth is something we all do all the time.  At my age and time in life, I am trying to reduce the growth but then I guess that is part of the process also.

Today someone we know and love is spending the first day with new cells in her body growing a new immune system.  Some else is killing their immune system so they are able to  to have a new one. Who knew those would be good things.

We have been getting Mom ready for her big move and while doing so have stumbled across wonderful things.  A picture of dad from high school I had never seen.  A letter to his mom explaining the money he needed for college.  His accounting is touching.  It explains why he wanted to know what we were doing with the money he gave us. 

A bunch of notes from college.  Letters from Europe.  Boy can you tell what is important to someone by what they keep and carry around.  Mom is amazed.  I am touched, Mary-Elizabeth is tickled to see in what ways she is like her Grandfather. 

Alex continues to move boxes and sort and get ready for the estate sale.   I am just staying out of the way, taking those boxes he cares to share with me to sort through.  He and I are not having a good time doing this together but I hope we survive the process.  I guess it would be better if I kept my mouth shut.  I have clearly invaded sacred ground.  What a surprise, I have come into a space and taken over?  Sort of like an amoeba, if there is a space, I will fill it. We are both going to have to make space for each other.

I don't look at this process as a burden at all.  I am lucky to find myself with the gift of time to do this with our mom. Clearly my time here has not been seen as a good thing by my younger brother.  It does not make me want to go home but does make me sad. Belle and David can 't be here for very good reasons and I can. If nothing has become clear to me, how important it is to take advantage of such things as time with family.  I won't have much in the next couple of years when I start working again. So.....

I will move forward, work on the garden a bit, packing a bit. Walking with Mom and doing what I can to help her during this transition to her new life. 

I have even thought about asking for some bridge lessons.  Maybe?  As I read through things I realize we have lost this most important game.  Maybe it is time to re-capture that part of the past.

New Observations and Good results

While I miss Seattle. A lot.  My back yard and all of it.  While I do miss it, I am also so glad to be able to be here.  What a gift to be able to spend time with my mom. 

Things are failing.  Weird things.  Things that make me unhappy because I don't want it to happen to me.  Many worry about their skin and their varicose veins, I am worried about my hands.  Mom can't do things I really really care about. I don't want to have trouble opening things or doing needlepoint.  I don't give a damn about my sagging chin.  I want to be able to thread a needle when I am 80. 

We are making progress. We are finding homes for the things that are important to her.  She does not care about things but about the people that are going to receive them.  It has been nice to know what special item or items goes with what person.  Little by little we have been finding homes for pieces of art, a certain type of glasses, a tie from Daddy. 

She is doing so great with the walking and the PT and the learning to move around with ease more.  Keeping her in the house  and under control is a bit part of this process.  She feels so so much better.  Her biggest concern is when she can sleep on her hip.  She is only 2 weeks out of surgery and that is her biggest concern. 

I hope at the end of my life, I have this many pieces of brightly colored glass in my lamp's light shade.

48 hour leave...

Left Eugune yesterday and will return tomorrow.  Mom, while doing great, still needs someone to be with her for the next couple of weeks.  She starts real physical therapy on Wednesday and we will wean her off her walker and on to cane.  I foresee her walking again with some slowness but she is really making strides that will make her life in her new place so so much better.

I picked up Mary-E after her trip down the Wenatchee river.  Other than a small flip of a double kayak and almost being sucked into at fish counter, she did great.  She swam to the middle of the river and was rescued and got right back in a kayak.  Now the oars and the boat were lost but I am sure someone found them.  Her time with other cancer survivors and doing "normal" things was life affirming and wonderful for her.  She lives in another relm and it was go for her to find her peeps... those that don't need to be told about PIICs and Ports and Hickmans. 

I have been having an interesting time.  Time to spend joining her world and not just escaping from mine for a bit.  My brother Alex is also at the house a lot.  He and his wife having been staying overnight and Alex has been getting read for a garage/estate sale.  He has been frantic about things.  I recognize the behavior because when you have to manage your own life and have another layer of activity piled on top, it can be unnerving. 

Belle and Karen are on the road moving from Michigan, Minnesota or Wisconsin and were last spotted in Denver.  Belle is going to be starting a fellowship in Albuquerque in July.  She has a ton going on and stressed in a different way.  She wants to be in Eugene and is certain Alex, Amy and I are going to break mom.  Okay Mom has been up and cooking bacon since the first morning she was home.  I have read all the material and there was nothing in the book that said it was not an okay activity.  Bacon cooking does not require any leg twisting. While she cooks there is time to do her counter exercises.

David is just David.  Working hard, trying to make everyone happy.  He is having the hardest time of it.  The house was the one place he felt the most relaxed.  It has been "home" for the most years and the one most accessible.  We all have houses we loved. We all had lots of houses to love.  He loves the Eugene house.  He is going to move most of the furniture and will be able to preserve it a bit. 

Well I have only 48 hours.  Lots of laundry. Lots of garden work. Lots of coffee.  Lots to do. 

She crawled in bed last night.... and needed a hug.

The world just seemed like an overwhelming type of place.  She was exhausted from the river trip, but exhausted in a good way. The kind that aches deep down in the dark part of our bones.

She slept in and then had lots of "stuff to do".  She did her stuff but then there were some bumps. None of them were huge bumps but they were little bumps but when put together they seemed to feel like Mount Everest.  Everyone rallied and helped her out.   All in a good way.  It just felt like too much yesterday.  It was all fixed.  It took a hug, some shopping, nails and some cousin time and a few moments in bed with Mom.

She did something "normal".  She went with friends and new friends down a river.  She had to think about life in a different way.  It was a small thing. Something no one would even think about but it was a huge step for her. A real step. A step back to a more normal life. 

Normal can take a while to get used to after a long absence. 

Lots of emotions yesterday.  Frustration, joy, fear, disappointment and sadness.  But it is all good.  All of it. Every little frustrating and scary bit. 

Normal.....

Mary-Elizabeth

Is off to go river rafting, like every single 20 year old in Western Washington. 

I am going to try and breath  and chant for the next three or four days...
Is
She won't fall in the river and hit her head like Dr. Carpenter predicted.  She won't fall in the river and hit her head like Dr. Carpenter predicted..... She won't.....

 

Oh dear, that is what the moma saber tooth cat's said to their babys when they went to the shiny water at the Lebrea Tar pits... 

 

Ohhhhh Dear

Moms can still impart wisdom and guidance.  We are so lucky to still have our mom. 

Memory:
Having lots of stuff in your house helps keep it sharp. She knows were ever thing is in her house, down to the placement of the step stool in the hall closet with the vacuum cleaners.

Thrift:

It is okay to cut apart the bottles of Montana Arnica because it does not come out very easily at the end.

Life Long Curiostiy;
There is something new to learn every day.  Did you ever read the New York Times Wedding anouncement?  Lots to learn there

Gardening:
New Guinee impatients are stupid they never bloom again after they come home from the nursery.

General Life Lessons:

Always be kind to your elders.  Not just respectful but kind.  They might leave a journal and tell on you from the past. We found Great Grandma Barnes 1948 journal.  Hankie Showers were very popular.  So was fried chicken.

Best Lesson:

It is never to late for new potatoes.  Because if you cook them today, you can have hashbrowns tomorrow's breakfast. 

Messes

We all deal with them differently.  We all see things differently. We all have ways to handle challenges.  Change is a challenge.

If you review the list of the biggest stresses in life, they are all changes.  Death, divorces, moves, new job, new spouse, new coffee house with weird coffee your don't really like.  They are all transitions and changes. 

My siblings are all handling the big changes in our life, the loss of the family home, differently.  We are a bunch of transients at best.  I lived in 3 states and the District of Columbia before I was 5 years old.  Mom has moved with dad almost 30 times.  But I have concluded we are all handling it differently.

Brother David was sure he wanted the house.  He loves the house, he wanted the house.  Well that was pretty silly.  He lives in California, has a well established business and can not afford another house.  He got over that and instead will take any of the furniture no one else wants. 

Alex feel it is his job to untangle, organize and sell 15 years of Mom and Dad's life.  He is stressed and so his reaction is to clean drawers.  He is working his way though the house and we all sort of sit back and ponder.  This was the end result of one session at Dad's desk.

 I was a bit confused bu then it made sense to him.

 

Belle is now driving across the county and checks in several times a day.  We don't exactly tell her Mom has been getting up and down by herself and cooking bacon at will.  We don't mention that we are done with dressing changes because she is healing so well.  We don't mention that Mom will only be getting 9 not 10 shots because I was not smart enough to open the syringe....  She worries and frets and calls to converse with her siblings. She is doing long distance therapy with both Alex and me. 

 

I am cooking and planting flowers and assessing what is going, what is staying, what needs to be spread out through our friends and Family.  I am on a very different tract then my brother.  I am here, in the moment until Mom is ready. Ready to move for the first time in her life to her own place.  She is 81 years old and has never lived on her own.  She is about to do what I did when I was 22.  My first big move to Dietrich Idaho, Population 82.

 

I am doing washing, and drying and folding and hanging on the line.  I don't always get the stuff off the but it dries the second day.  I am working really hard to make sure there is good fresh, high protein food.  Yesterday was killer meatloaf and tonight is some salmon.

 

In all fairness, I am also making big messes.  This was the kitchen after making black bean and corn salad.  

I guess the real message here is that life is messy. We can plan and organize and cook and sort and clean and strategies and problem solve  and still life is messy.  Nothing seems to turn out the way we had hoped or expect or anticipated.  But sometimes out of great messes come great black bean salad.

 

 

Trying to Keep Mom in bed

So she sort of checked her self out of the hospital. We brought her home and she has been up cooking herself breakfast.   Need I say more?   When I can. I will post the picture of the bells we put on her walker.   

Mom's Decided to Move to a smaller place.

Okay, not unusual words.  Words spoken lots of times. There are so many people that transition every single day from their parent's their children, their friends.  It was not unexpected and Mom had joked and talked about it for years.

It is one thing to hear it.  It is another to really have to deal with it.  Lots and lots of emotions involved.  Lots of loss, lots of gain. Lots and lots and lots.  A life time of lots.

It is a reliving and re-letting go of everything that has been your life.  As drawers are opened and cleared of the assorted stuff that accumulates there is the picture, the small vase, the gloves from another point in time.  If feels like being drug along a zip line, slamming into a tree and starting again or backing up or zooming to the side.  It is an emotional mine field.

Mom and Dad were only in the Eugene house for 15 years.  Most of the stuff in the house is new to me.  Most was purchased after I left the next.  I don't have a lot of attachment to many of the things but still there is something about the Parental Stuff.  It is imbued with special magic. 

Mom's lamp, Grandma's table, Dad's change box.  Bits of history and juju are there.  Everyone has different memories about different things.  It is really interesting to learn what is important to everyone and why.  Alex loves the art.  David loves the Michigan Furniture, Belle is enamoured with a library table and the Hoosier.  I want the round table where we did puzzles.  Some of these things are more relevant than others.  I had no idea David loved the furniture.  Every single bit of it.  Belle is a bit more practical because of her ongoing and continuing transitions.  

None of us need anything.  We are living in full houses with all of our accumulated "stuff".  We all face the downsizing of our lives in the near future but there is still something, something about all of it.   I think part of the wanting of the "stuff" is the idea that having rescued the treasures, even the mundane stuff, it is not a real thing.  An era is not coming to an end.  We are not getting old and we are not facing our own mortality.  Life is not changing and transitioning.   We still have a place we can come to visit and revert to our 14 year old selves.  

Tomorrow Mom has her total hip replacement.  There is nothing to tell she won't do well, figure out how to get in and out bed and be able to come home to totally recover.  We will start the process of packing the stuff she is taking to her new place and then begin the systematic process of sorting and ridding the house of it's remaining contents. 

It is a process but I have lots of experience with process and so do the other mamebers of this family.  

That is how it feels today.  

Off to help the other Book End

Mom is having a total hip next week.  She will be fine because she always does well, for the most part.

I am leaving in a few hours to spend some serious time there. Not only is Mom having a hip replaced but she is moving to the Country Club..... Oh it is pretty spiffy.  Should be a good move for her.

So in order to do all of that I really have to do some house stuff. Make my garden easy to water. Figure out what to take, finish all the laundry.  Take the right stuff and not just stuff.  What do I really need.  Trying to fit into three maybe for bags.  Shoes, cloths, electronic and needlepoint and the "other bag".  The bag of just stuff.  Extra tooth brush, the deodorant I may have not packed, socks, more shoes, a book I have not read.  The weird things that seem to like to go along, odd hairbrush, some shampoo in case I did not pack one.  You know, the extra for the unorganized and non list making person. 

I am having a hard time going to Eugene.  It seems hard this time.  I also have the pull of my yard.  I love my back yard and it's quietness.  I really learned to love it during Cancer Part I.  Mary-E had a number of camps and trips planned that summer and she was able to participate in most.  I had several points of solitude.  I would sit in the back and just be.  Just be with the terror and anxiety.  It must be sort of a magic place because it always made me feel better about things.  Just having a special place to sit and process and chat with God and the universe is great.  

I look around and realized how many angels and Marys and Buddhas and things are tucked into the back yard.  It is a chapel.  A quiet place to think and to ponder and to complain and to deal with life during times we feel lost and alone and scared.

My silence over the next month will be from lack of good Internet, not big scary issues. We tried to get DSL up and running at the Eugene house but failed. They did offer us a two year plan but we said "ARe you kidding me, it is a college town.  Even Elmira has DSL!!!" and hung up in disgust.

I will be stealing wireless when possible.

Enjoy June.

Connections

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

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

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

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

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

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

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

The Road To Transplant

I never wanted Mary-E to have a transplant.  We had watched our friend Elise go through the process and it was horrific.  GVH, Mouth Sours, the pain, the side effects (or is it affects), the meds, the pain, did I mention the pain.

I so did not want her to go through transplant that I argued with the poor new fellow John Carter when he told me that was what was happening.  I knew a Double Hickman meant transplant.

But, once you realize it is the only chance, the only way your child will survive, the only option in this day and age, you want it so so badly. It is the only thing you can think about.  Is it possible, can you make it, will it work.

But.  You have to get there.  They make you jump through hoops and crawl through tunnels and into deep basements with spiders and giant scary things.  There are endless tests and lots of hard hills and mountains to climb. 

The irony is your child has to be in perfect health.  There has to be nothing wrong. There has to be no problems with organs or cavities or.....This with children who have been radiated, injected with massive amounts of chemical that make them sick.  No colds, no apparent infections, no cells wandering around trying to cause problems.

You are so so careful because you want it so much.  They make the bar really high so you want it.  They make you beg for it, pay for it, pray for it. 

GIVE ME MY TRANSPLANT NOW

Transplant is a saving grace.  It is the one method of treatment that can save your child.  These docs don't like to loose. They want to save every single little person.  Transplant has given them a tool.  It is the last life boat leaving the Titanic.

15 months after transplant, I am finally being able to look back and see progress.   Real progress.  I know there are challenges and there are lots of scary things in the future.  But transplant and only transplant give us that future.

Alistaire, our sweet lovely child and her family are trying to merge on to this road.  They have been shown the on ramp and are being told they Might have a chance to join, maybe, if they are good and universe agrees.



They have only one road to take.  We are all prayer the ramp clears of all traffic and construction and other

obstacles and http://conglomerationofjoy.com/author/conglomerationofjoy/they are able to move forward.
 

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.  

 

 

   


  

Brother David and his Family is Here and It is Interesting.

John and Erika are both way grown up.  John is not taller then his father but will be soon.

There is a family wedding for  my baby brother David.  His brother is getting married.  His "bio bro."  I remember the day he called me and asked for help to find his other Mom and Dad.  I was able to talk to Dad about it and he was reluctant to give me the information about the doctor who handled the adoption.  Dad was afraid I would create a problem for the family by making inquires.

I assured him it would be a simple thing.  I would ask the Doctor.  He would relay the message.  The Doctor would give the mom my phone number.  If she wanted to talk to David she could call me. Many think it was a worry that David would want to leave the family, Dad was worried David would be hurt.  But David being David was just wanting what he wanted. He wanted to reach out and I helped him do so.

I made the calls.  The Doctor was more than excited to hear from me.  The family had been friends with the doc's family and he told me we would hear from them.  Within 20 minutes I heard from Pat, David's Mom.  She was very excited to talk to me.   We talked for awhile and filled me in with what had transpired in the last 25 years.  David had two brothers, a Grandpa, a step dad, an uncle a famous Seattle Great Uncle and an assortment of other family.  I let Pat know David would call when he could but that he was gone for the week-end.  While I complain lots about TV is not a good source of information.  This worked out just like they did on Oprah.

My next call was to David.  "what!!!!!"  he so kindly said when he answered the phone.  Rude, Rude, Rude.  I said "Fine, I have the phone number for your Bio Mom but you have to be nice to me."  Phone hung up.

Ring, Ring, Ring, "Hey sweet wonderful and most special sister, this is your loving and wonderful brother, give me the number please."

He called and they talked for hours.  It all worked out just fine.  We have all been together over the years. Lives inter twinning.    When David graduated from college we had a big event.  Lots of people there.... David was sitting in a room, Dad was in a chair, Mom was putting her legs up and David said to Mom:  Pat is my mother, you are my Mom"   David had it right.  

He loves his family, all the various branches.  Pat has always been very appropriate about how she comes and goes in his life.  There is a relationship and a warmth and he is family, but David says it best.  "Sis, your house is like going home, just like Moms."  Sometimes when I introduce David there is a mention of family resemblance...  There is a deep deep connection between us.

David came during Mary-Elizabeth's time in the hospital for transplant. He bought her a TV and they watched together.  He was horrified at what had been provided. He dismantled the old TV, moved it to the spare room. He spent time with her, talked with her.  He was very relieved to see her now.  He has not seen her since transplant.  His joy in seeing how she looked was great affirmation as to how much progress we have made.

We are all family in some way, people come and go, we accept them when they come, we love them from afar and enjoy them w

hen we are here.