Childhood Expectations and Adult realities

La Brea Tar Pits were all I wanted them to be until the lady said stuff does not pop out but rather has to be cut out, dug out, scraped out of this icky gooey, hard compacted asphalt like stuff that goes deep into the ground. 


But what a place.  Smells of tar, methane gas bubbles up, places all over the grounds are fenced because the stuff oozes still.  Animals still are caught in the muck.  Sadly a mating pair of falcons that were after a mourning dove died this year.  No large mammals have wandered in, only a few small children.


It is amazing to see and appreciate the magnitude of the place.  Only mammals, all extinct.  Only one human has been found and she appears to have been buried. 


They recently built a new parking garage next to the pit area and low and behold they ran into huge fossil deposits.  They took huge boxes and I mean 12 feet tall boxes and moved them so the fossils can now be released from the black, tar, asphalt gooey stuff.  The bones of one animal do not stay together so they need to dig through lots and lots of different areas to find the whole fossil.  

Just know that any really really dark brown extinct mammal fossils probably came from this project.  They share their fossils with the world. 


What was I expecting?  A mastodon to pop out of the black goo. 


What did I find?  A very complex, very interesting history lesson.  A chance to see our past in a different way.  I love this sort of stuff.   I don't ever want to not be interested in what I see.

Trips and Family

Haven't been on many for along time.  When your tether is 30 minutes from an institution it shuts down your brain as you focus on the here and now.

A couple of months ago my sister of the "of course I have developed Epilepsy at age 50" told me she was going to have to be in LA for conference.  She was worried about being in a room at night alone and her wife could not travel with her.  She suggested I might come and share the room with her.  I found some reward points I had not known about and looked at our medical schedule and took a leap of faith.

I tried to be un-attached to the trip because as we all know, things can happen. 

I made it.  Belle made it after a delay because someone spilled water and they had to find a less damp cushion.  Alex and Austin made it after sitting on the tarmac in San Francisco. David will fly in tomorrow for a visit and there will be a full dose of sibling rivalry and the like.

Everyone was worried we would be fighting. Mary-Elizabeth suggested separate rooms and floors.  Mom was sure Belle and I could not be in the same room.  And Karianna was sure we would fight.  So Belle did decide we should go to the Tar pits instead of the Getty today but Alex and I are just going to do what we want.  She is not even going!!!!! 

Good to be here.  Good to be with my siblings.  This the first time we have been together without our parental units or a crisis.  Sort of a good thing.

I love Family but then we have only been here for less than 24 hours.  I will check in again at 72.

GVH WARs Part II

WE went to see Dr. Paul Carpenter again at the SCCA. He is the doc from Australia that eats kangaroo. (yet again another story for another day)  He was our attending when she first started to have Gut GVH.  He put her on a course of steroids and the like.  As we so politely pointed out yesterday:  You did not fix her!

I explained that I really did not want to return to Children’s for another round of Chef Walter food and days of Dark Shadows watching. 

So here is the plan:  She now is being tapered in a very different way.  She is going to be taking Pred on one day, HydroCortoson on the next day. She is going to taper off the icky corn oil stuff and the noisy pink pills and then try to get off the Pred.  Or something like that. 

It appears to be pretty endless but then it was pointed out to me we signed on for a year. Not six months.  Not 9 months but for a year.  I was questioned about what I was doing and whether or not I was home being care taker.  I did not mention I had abandoned my child for 6 days.

So we wait, we see, we wait some more.

It made me so so glad to know the Dr. Paul does have a beautiful Crystal ball that he consults on a fairly regular basis.  He did say it appears to be cloudy most of the time. 

We can wait, half way there. 

My Escape.....Part One.....

Paul and Judy Somerfeld are here from Idaho.  Judy had offered to come help during my reunion time but it did not work out so she was sitting here and said:  Why don't you go somewhere?


Her husband was headed to the airport before the break of dawn to go to Alaska to fish.  I loaded the dogs, the car, grabbed a few things for Mom's birthday and headed out the door.  Way out the door.  Way out the door all the way to Eugene Oregon.  


I just drove.  Of course I stopped and had a waffle at the Country Cousin in Chehelis.
Lily was confused. Tucker was excited and I just drove. I was so ready to really leave town

It was a good time to escape.  Mary-E is apparently stable for now.  She is on a pretty high dose of prednisone, it is summer. She is in protective isolation. We had the appointments for the week taken care of so I was out the door. 

Mom's birthday is today. She has attained the age of 80 and has been making "I want a birthday party noise."  So everyone did what they could.  Amy took her out to the King Estates Winery.  I went to visit and took her to the ocean. 

I was tired. I slept.  I slept some more.  Mom fed me Breakfast Sandwiches.  She had thawed a giant lobster tail and was so relieved I refused to partake.  Mom loves lobster. 

While I was driving down to Eugene I had a thought about going with the dogs and mom to the ocean.  Mom and Dad went to the Adobe Inn at Yachatz Oregon. There is a separate building for the dogs, a good restaurant an interesting beach and great hiking trails into the mountains.  What could be better.  Oh, let me not forget the candy story with 30+ salt water taffy flavors.

She and Dad went several times a year. Most Thanksgivings, many other times.  It was one of Dad's favorite places. Mom had not been there since he died. She has talked about it but never done it. 

I told her I really wanted to go and it took only a little bit of a push.  We packed up and headed out on Wednesday. She knows everyone, head housekeeper, head of the hotel, the restaurant, the grounds keepers. 

I miss the Hickman Line.

It had to go but it's departure was not a good one yesterday.  It was more than a stick. It was a real poke, a couple of them.  The veins are not very interested in being invaded after all these years.  Digging, in more than one spot. 

It was accomplished but the bruises tell the tale.
I don't think there is anything quite like the quiet tears. 

Wondering....

 Roger Dunaway....

How far away is the thunder?

Will the GVH return?

When will I stop worrying about:

    Side Affects;

    New Cancers;

    Complications from Radiation;

    Complications from Prednisone;

Complications from eating a hamburger with lettuce and tomato;

Sunburn;

Cataracts;

Weight gain and Weight loss;

How many jays we have;

Whether or not we will have any ripe tomatoes this year;

Whether it is tomato or tomatoe;

What to fix for dinner;

Okay, maybe it is not too bad.  I am going to get ready to go swimming in the thunder.  I think that is okay, as long as we don’t see the lightening. 

Maybe when I don’t hear the thunder, I won’t worry about the lightening any more

Just the Right Fit....

Our neighborhood has a nesting pair of Steller Jays.  They are shy and bossy and pushy and oh my god Noisy.  It is the harshest screech in the morning symphony and a bit startling. 

I have never been able to attract them to the feeder on a regular basis.  Our two big trees make a good hiding place for them.  They are fond of the “upper canopy”.  They can be lured with the right food.  Hazel Nuts, peanuts, the like.  My neighbor Mike has a few that were intruding on his feeding of the crows.  So I hunted down some peanuts.

Not just a few peanuts, 25 lbs of them. Un-roasted, un-salted.  Out of the ground, dried and stuffed into a very nice bag.

I started to put out a few.  They were reluctant to come.  Then they started to complain if the peanuts were not readily available.  I created a little platform close to the house so I have great viewing.  They clear them up in about an hour’s time.

The jays are much smaller than the crows.  At least by half.  While the crows can carry away two maybe three peanuts in their beak, the jay can only carry one.  Our great friend Patty said she had seen the jays at her mom’s house be very picky about which one they choose. 

She is very right.  They are picky but it is because they want to carry two away at a time.  One has to be just the “right fit” to go down into the gullet and the other in the beak.  I have watched how they choose, smaller, no stem.  Evenly sized.  The beak on does not matter.  They will pick up and examine several before trying to swallow. 

As soon as the payload is ready, they fly off to a number of secret locations.  Someone has a hiding place in their yard or gutter or some other stash full of peanuts. A stash they remember.

Just the right fit.  Watching them makes me appreciate the work done on finding the right cells for everyone.  Right now we are trying to balance Meb’s medication and it is taking a bit of time.  It is not instant. 

At least I am not the only one with a weird end result

French Script is the font.  I chose it because I was using a French recipe for Arpicot Jam.  Mom told me I could reduce the liquid in the jam if I put it in the oven.  Now over the years I have made apple butter and plum butter and tried apricot.

I was feeling overwhelmed by the mass of apricots or I should say, amazed at how few it took to make a batch of jam.  So I wanted to speed up the process.  Three batches in a pot big enough to pickle a small goat, a hot oven and a nap.  Seemed to be the best plan.

O0ps……  Oh, well, it is a bit dark, a bit sour because I added too much lemon and the color.  I was going to dump the entire pot and decided to see if I was the only one with the issue.  Oh, I love the internet.  This lady was tied up and her jam “Caramelized”.  It has great and various undertones and depth of flavor.  Finding this picture gave me enough courage to bottle the jam, caramelized, darkened, over-cooked, under cooked.  I will test it on my neighbors and see what they say.

Friday I will try again.  Traditional way this time.  I am planning to make some plum jam this summer so I had better label this batch lest I am confused come Jam Give Away time.

So What are you doing now...

When did you get admitted for the transplant?  January 16th

When was the transplant?    January 24^th

When did you leave the hospital March 20^th.

When was day 100?  May 4th

When did you go back to Children’s? May 16th

So now what?

GVH WARSSSSSS

Graft Vs. Host /New Cells are working –yeah.  They don’t recognize their new body-boo

This is a very weird space.  Here we sit.  The line is gone so things like swimming are possible.  (Only in the deep end, only when kids are not in the pool, only, only, only…..)

This is about the time everyone sort of thinks life should return to normal.  It feels like it should.  It feels like there are not big goals and accomplishments and on-line classes, returning to work, big trips, back to the real world.  I think both of us feel like that should be the case but there is this big cloud.  The GvH cloud that seems to be hovering.  It is like we are stuck between floors and there is no one on the other end of the line. They will be there soon, but not now.

Mid-August she completes her Prednisone taper.  We hold our breath, a collective breath holding.  Did it work?  Will the GVH come back?  Will the new cells have learned to love the new body? Will it be time to really see and start to taper off the tacrolimus?  Lots of questions and no way to know the answer. 

So the answer to “So what are you doing?”  is waiting, watching, preparing, staying close to home.  Wondering, hoping, dreaming, investigating, sorting, purging, quilting, jamming, gardening, even reading.  Half-way through.  

Day Forty.....

On May 30^th of this year. Ruby Smith, 17 left her body after fighting cancer for 9 months.  She has been gone from her body for 40 days.  I cann’t bring myself to say that she has died.  Her body is dead but she is so alive in so many ways for some many people. 

http://www.youtube.com/watch?v=iaFApfOw0GY  She left some great photo's for us to remember her journey.

We spent some time with her mom this last week-end.  During her visit I moved a small number of leftover beer in a container and dropped all the bottles.  They shattered on the concrete.  Her Katie said she seemed to be surrounded by shattered things.  Bottles, glasses, mirrors.  It was a bit disconcerting for her. 

I said that Ruby was trying to get her attention.  I was not joking. When my Dad died, I did some reading and was struck with the importance of the 40th day. My sister was reporting lots of weird events that made me think he was not really gone.

The 40th day seems to cross cultures. It is steeped in so many cultures. It is believed by the Buddhist that Siddhartha died and 40 days later finally transformed. Jesus ascended into heaven on the 40th day. 40 days and 40 nights, lent, the flood, Moses on the mountain. It is everywhere. Some think that in the ancient world time was calculated on nine 40 day cycles to make a perfect solar year.   It would make sense that after 40 days we would be more ready for our loved ones to move on to their next stage, or place or what ever we believe. 

I think this is Ruby's 40th day.  I know from talking with other’s that when a teenager is coming to grips with their death they are very worried about their moms and their dads.  They understand their death is going to forever shatter the life they have had with their family.  I cann’t understand how Ruby’s parents feel rifht now. I don't really have a clue.  I have only looked into that abyss but never entered.  I know they  are changed, deeply and profoundly.

There is no way to keep that from happening. The life with a child can never be put back exactly as it was before.  It will go back together but not as it had.  Maybe the "shattered" bits and pieces Kate has been seeing are a reminder of how fragile life can be.  A reminder of what happens when we lose the person we love the most to something as awful as cancer.  I know this is not politically correct but mom’s have a different relationship with our children. We grew them.  We felt them move, we felt them kick.  We have a connection with them that is unlike any other connection we ever experience.  Their loss is life transforming.

I have to believe that even though there are shattered pieces around us, we can, with time, see that the pieces can be put back together. No doubt they won't be the same, it won't look the same, but it will be functional and have a different kind of reflection. 

Ruby has been breaking things to let her mom know that she is ready to go but to help her mom find a new direction, a new reflection.  A new way to see the world.

Jam is in My Genes....

I have to make it every now and then.  Sort of like the Salmon returning to the place they were born.  It hits me during a dream or a moment of weakness.  It starts out with the urge to obtain large quantities of fruit.  So much that you know it could never be consumed by a family of 20.

This year I had the urge and inclination to do apricot jam. I am not certain about my crop of grapes and this is something that I can do while we are home.   Amber, mother of Allie, our favorite Relapse Sister, brought me two boxes of apricots.  We met them on Friday at the hospital for the exchange.  So I brought them home and found that they were not as ripe as they appeared.  They were so perfect and beautiful but need a couple more days before they are really really ready.

I gathered the jars and the sugar (when did 10 lbs of sugar start to cost $8.50? and then started to look for some sort of special recipe.  French, Texan, Ohio, SureJell.  Much to my surprise most apricot jam recipes do not require pectin.  They have enough in their skins to do the job.  Most just take time, and boiling and candy thermometers.  About 30 to 45 minutes.  Even when you do everything right, it does not always come out the way you expect.  I might be gifting Apricot Sauce for Christmas not jam.

Two batches are done.  They turn out great if you just look at them.  Until the cooling and setting happens there is no real way to tell.  They are really pretty and it is so much fun to see them accumulate.  OHHHH, I just heard to sealing “POP”.  Love that sound.  I will be getting pretty good at this over the next week.  A couple of batches a day.  Little batches, lots of stirring. Lots of sticky for Lily to clean up.  Maybe it will be my morning ritual or take place of my afternoon nap. 

Maybe I am making jam right now because it takes time.  It cannot be rushed and it has to be attended to with care.  The middle is not much fun but the end result is wonderful. 

Maybe I can find one more batch of ripe apricots…..

The Jays come for breakfast.

Come Look!  Come See!  Look at what is out the window!

We are a family of observers.  In the days before IPhone, and IPads and Game boys and in car DVDs and DVRs the world was mean to be observed.  In our family it was a good thing to be able to point something for other’s to ooh and awe over.

A terminal  moraine, a small humming bird at a feeder, a flicker eating suet, a tree that has grown an odd branch.  A boulder out of place.

Such constant practice has made my life much more interesting if not more complicated.  If you notice things you begin to see smaller and smaller differences.  The way someone sits, the way a smile is not quiet right, the person sitting in the corner not talking with anyone.  The deep sadness on another person’s face.  It takes self control to not reveal all that I see.   I have found over the years many don’t want to know that someone has noticed their limp they are trying to conceal or  how moved they are by a movie or a song.  Most tend to keep their internal world to themselves.

We don’t start out so closed off.  Yesterday we went to water aerobics and Meb left the pool early.  She went to the shower and a little girl about 2 was watching her with great intentness.  Meb would wash her arm and the little girl would follow her every move.  She would rinse her back and the little girl would turn and do the same.  The mom asked Mary-E if she did babysitting.  Sadly my lovely, child loving daughter had to explain why she could not, at this time and why.  She did take great pleasure in her few moments of being the observed.

More Sun, more observation. More enjoying the day in Seattle.  As mom said yesterday.  If we lived in California, this would be just another day.  Here it is a day to enjoy and relish, as every day should be cherished.

Connections and Re-Connections

20 years ago and a couple of months  ago I took a birth class.  Maggie was my coach and then Lisa Allhadef  joined the group.  During the class we met the other parents to be.  They were an assorted group.  The vegetarians (moms were secretly stopping at Dick’s during their evening stroll), the happily married couple, the couple that everyone thought was married , and I am sure there was a lesbian couple because that would be so Seattle.  Anyway during the process I met and connected with Debbie Lee and Scott Peterson.  

We had very close due dates and in fact our children were born almost 21 hours apart. Mary-E on the 4^th and Nate on the 5^th.  We became friends and went through lots of stuff together as the children grew.  The kids were in school together, we did stuff together and then we did not see much of each other.  Girl /Boy divide was pretty common.  The boys and their parents do stuff with other parents with boys, it just happens.  We would touch base every now and then but then the last couple of years the connection became more “live”.  Both kids have had life threatening challenges.   The gift of those problems brought us to a great place as the children entered their 3^rd decade.  

Benihana’s served as the Nate Birthday Celebration.  We were lucky enough to be asked to join him for his party. It was grand.  Nate is beginning to figure it out.  He is proud of his job and  his contributions to his part of the store  where he works. He is aware of life’s injustices and wants to help make positive changes for himself and his fellow workers.  He is wise enough to know there are some things that can be changed and is willing to find another place to have his talents appreciated but will be holding on to his current position until a good change comes his way.  I had a hopeful conversation with him.  I left dinner feeling like we would have other conversations in the future.  Mary-Elizabeth had good conversations with Scott and Debbie.  I think they would say the same thing about the future for her. 

The kids are 21 hours apart in age, worlds apart in where they are going with their lives and close enough in experience to be on the same path.  Both have had to climb big mountains and both have had to dig deeply into their souls to make the journey.  They are both scarred and a bit battered and bruised but they are alive.  Sometimes alive is good enough for now.  It is a reason to rejoice.  A reason to take a deep breath and maybe relax for a minute or two.

The birthday dinner reinforced my determination to spend more time connecting and re-connecting with those we hold dear but not near enough.

Happy Birthdays Nate and Mary-Elizabeth.  Both of you deserve to travel the next decade of your life on an easier more joyful path.  More than anything, your parents would greatly appreciate it if you did.

5th of July.... 2012

I think I hate parties.  Or at least parties that I host.  I want to sit down and talk with every single person that walks down the driveway.  I want to sit and chat and connect and let everyone know how much I appreciate their support and encouragement.  I love that they take time out of their day to help celebrate with us the many things we have to be happy about.  It simply warms the cockles of my heart when Mary-E comes up to me with tears in her tears in her eyes and says:  Did you see what ___________ gave me?

Each and every person, each and every phone call, each and every e-mail, each and every text message, each and every meal, each and every Starbucks card, each and every invitation to an event, each and every check or gift card, each and every trip to Costco, each and every load of laundry, each and every weed pulled, each and every prayer, each and every offer of help.  Are all such indescribable gifts.  Gifts that have been like manna from heaven and have come at just the right time. Many have come when I was not even aware of a need.

It is so special to be reminded of the gifts from God, universe, the great pumpkin, or whatever you believe to be the reason we travel through life on this planet, come ultimately from the people we love. 

To all  that joined us yesterday, to all I did not have a chance to spend time with and really connect, Thank-You.  Know you are loved and appreciated and every effort is going to be made to spend some time with you over the next year.

We made it to her 20^th birthday party.  That is  the best gift of all.

Happy Happy Birthday Mary-Elizabeth Sierra Lanhm

20 years.... yeah.

The Day Before

We are so very happy that the sun is peaking out today.  We need the sun tomorrow and a bit today would be reassuring.

Mary-E is so excited about tomorrow.  She is feeling better, people give her energy. She is thinking about things like going back to school and she is reading again.  She has not really read a book in months.  She told me to be quiet because she was reading.  It was a great moment.  A moment of her last teen-age snootiness combined with a normal  ordinary request. 

Ohhhh, the sun just came out.  Okay, now I can get motivated to do the things that need to be done today.  Better make a list.  Buns, cake, drinks.  Okay then I have to clean off the tables.  (Stash everything  under the table.) Watch a few episodes of Dark Shadows.   Find the “party” box in the basement. Make a trip to Good Will with all the stuff I find before the Party Box.  Try and figure out what to get Mary-Elizabeth for her 20^th birthday.  Think about how fast 20 years have flown passed.  Become a bit melancholy for a moment. Look out the window and notice that the Stellar Jays have not come to retrieve their morning peanuts and also note the Crow family is strangely quiet and not around.  Wonder if there is a hawk in the area.  The squirrels are certainly amusing this morning.  Four babies, more like teenagers now, up and down the trees and leaping from the bench to the tree,  oh I need to have the bench moved to the back yard for the party.  I better take it out from under the tree today to dry. I must not forget the camp chairs…..

20 years.  It would be easy to see it as 8/20ths full of cancer worry, and treatment and pain.  I am going with 12/20th  of great times and challenges.  WE are going to leave this chapter of her life behind and add more good years.  I am going to get my obvious ADD under control. Settle my mind and work toward a new career and different and positive distractions. 

I heard something this morning

Some times in the morning there are no real noises.  The street is quiet, the birds are in between their very important chanting chorus.  The crows are yet to leave the nest to begin their morning attempts at satisfying the hunger of their two children.  The dogs are digesting and not yet trying to remind me there is a walk in the future.

I was sitting at the computer and waiting for it to wake up.  There was a soft hum.  A hum I had never heard before.  It was pulsating and not unpleasant.  I tried to ascertain it’s source but failed.  My first thought was it was a waste of electricity and I should turn off all unnecessary items.  I unplugged the printer, I turned off the power strip.  Nothing.  The noise was still there.

 Maybe there is an alien growing in the wall.  Maybe the sound has always been there. Maybe I have some really weird brain tumor. Maybe……….

I decided to just sit with the noise and see what came of it.  It was a good thing to focus upon for a few moments before the day began.

As I reflect on those moments I realize it would have been better to take a moment and join the hum for awhile but instead we switch into search and destroy mode. 

On another note, the party is coming together.  We are going to do some serious devil egg making today.  Bean shopping and fire cracker hunting.