Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,

 

I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.

 

  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.

 

I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.

 

Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  

 

Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.

 

Thank you Sally.  Hope to hear from you.

 

Aileen Kelly

Executive Director | Guild Association

 

 

 

Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

Passages...

Some are dark and gloomy. Some are sudden. Some are full of light and wonder. Some are just so scary we cannot even begin to comprehend the importance of the event. 
Sometimes they slip by and we don't know they happened. 

I hate to plow through life and not notice.  Not pay attention to the important moments.  The person that needs a moment of your time to re-establish their grasp on their life.  The moment to listen and try and help.  We need this going both ways.


We lost such an important person today. Anne Lunceford, age 93.  She had been slowly winding down for awhile.  A long while.  She knew people and still was able to express herself but the spring was pretty weak for a long time.  She had been a part of my life since I was 13 years old.  Always a smile, always a willing moment. Always reading her bible quietly. Hair always the same.  

 

She is going to be so surprised when she is greeted by her last dog, Min Min.  No one had the heart to tell her Minnie had died.

 

She made a million cookies, said a million prayers, took in a million dogs and cats that were not her own.  There was always a calf in the corner of the kitchen that was wanting a special bit of extra care. She would never turn you away hungry. She would always take your forgotten paper to school. She would never be upset when Kelsie the Westie locked her out of the car. She would never not pick you up at 2:00 am at the train station.  She always gave you the best of everything. She gave the best she had to those she loved and she loved everyone.

 

The world is a smaller sadder place today than yesterday or even this morning.  If everyone did just one Grammy like thing.  It will end up being a grander place.

Intentions

We are all guilty of misunderstanding the intentions of other.  We read them through our own intention prism.  Sometimes the view is drastically altered depending on the overall ambiance of the moment.

We intend to be supportive but things get in the way and we are dealing with our own crisis and then there is the snow storm and a new project.  We intended to reach out and then the perfect moment passes and then the acceptable moment passes and then it is just too darn late and it is embarrassing and shameful and oh well.  We intended to reach out.  The other person or family might never know. Too late now and it is best to ignore the event ever even happened.  The best intentions are now a reason we don't see or communicate with someone we dearly loved. 

Sometimes it is a good idea to reach out AFTER the big moment.  The person reaching out feels better. The person touched once again by a friend will not be reminded of the unintended slight but be relieved things are fine.

For more than a year I have been "intending" to call.  I finally did.  It was a good thing.  You never know when it will be too late to call. 

Glimpses of NOrmal

I know I will never trust the universe in the same way.  I was speaking with someone today about my bad surgery karma.  Dad comes for surgery, he dies 2 weeks later. My knee is installed, MEB relapses.  Fool me once shame on you, fool me twice, Shame on Me. 

Yes I know it is a silly way to think but we are creatures that seek patterns and insight to make sense of the world we inhabit.  That's why we Cancer Mom's freak out so much when some little thing happens that is not "normal" in Cancer World. 

There is a secret, by invitation only, Facebook page for Cancer Moms.  There is true, raw gut wrenching stuff happening on that page.  Most times the moms are wondering if what is happening with their child is "normal".  They need to check in with each other about their worries.  No one ever suggests they are over reacting. 

"My child has a low fever and I am afraid to call the doctor because they think I am over protective."  The doctor that thinks she is over protective is not her kid's Oncologist.  He is her much loved but semi clued in hometown doctor.  It is frustrating for everyone. 

Speaking from experience, better safe than sorry.  It is never worth not making that call and finding yourself sitting in ICU with a child on life support.  Might seem extreme to many but it happens in Cancer World.  We all know the stories, the reality. The warm spot on the leg that is a blood clot and a 6 day stint in the hospital on high dose blood thinners.  The fear the clot might move and travel to the brain or the lung.  It is a call that needs to be made.

We live with a different normal and as Mom's we

need to not apologize for our worry.  We each had a kid with a weird, not to be worried about something.  "I thought it was just growing pains." " The earache would not clear up."  " I thought he was being lazy."  "The doctor just told her to go home and get some sleep."

We react the way we do because we have had a shocking, life changing event in our lives.  We have had the call, sometimes more than once.  "You have to come back to the hospital. Bring enough belongings for a two week stay."

Never ever apologize for your worry. Your concern.  When the kid calls from college and says:  " I am having some bleeding."  The right response is, call your doctor and do what she says.  Don't feel silly that she goes to the ER and they do some tests and some exploring and suggest some simple things.  Knowing it is nothing is worth the Co-Pay. 

Nothing is more normal when your Normal is in Cancer World.

Newest Study: Coffee is Good for You!

Oh, there are times I really need to know that I am doing things good for my health.  I hear about people stopping their consumption of Cafine and coffee and wonder what it would take for me to give up my hot strong, deeply satisfiying cup of coffee. More like a barrel if we are being clear.  Deep dark, sock knocking off strong. 

Today I will not worry about the things that might happen and figure out what I can do to change my universe today.

Time to make another pot of coffee.

Hitting Walls and Learning how to bounce back in a constructive way.

I have a million skills.  I think they are very apparent.  I don't seem to be able to convince anyone they have monetary value.  I don't know what they see when they see me, it might be too much lawyer stuff.  Maybe having been a lawyer is sort of like being a convicted sex criminal. No way to not have people view you as your former self.  Everyone thinks I want to be a lawyer.  I don't know how to convince them otherwise. 

People keep saying.... Just go back. Just return to private practice. You are good at it.  And Damn it all to hell.. I am or was. I have a great mind, a great sense of right and wrong.  I can conceive many to do many things they don't want to do.  Yes, you have to give up half or more of your life. Yes, your children will become hostile and difficult (they would have anyway but this will seem like it is all your spouse's fault and you can blame them).

They cannot see  that the lawyer part of me. The part that made me good at my job. The part that was able to make people feel better about what was happening to them is broken. It is gone. It is never coming back. Sort of like the glaciers.  There has been a fundamental profound, forever, global warming kind of death of a part of me.  If it ever came back it would not be the same.  The scars are too pervasive and deep. If I were a seasoned football player with a blown knee, no one would think twice about my walking away.  My lawyer bone is broke, smashed, demolished, vaporized, crushed, broken to pieces, busted up, fragmented, shattered, annihilated, decimated,

rubbed out, nuked, extinguished, run over by a herd of African Elephants, bowled over by 10,001 brides at a Vera Wang dress sell.  I am done. Are we clear?   

So, the journey continues.  Look here, talk to this person, meet with that person. Consider this option, revise the resume, again. Re-draft the cover letter, again. 

Some would suggest I am getting my comeuppance.  I should have stayed in teaching or let Mary-E be alone during those weeks and weeks in the hospital.  She is old enough, I spoiled her.   It could have happened that way.  I just listen and suggest they don't know what it is like to have the phone call, or in our case the calls. Only 13,500 of us in the USA every year receive such a call about our Children. .00004369% to guess.    It makes me crazy when I hear and sense those sentiments.

I have to walk away from the thoughts and the negativity.  I have found myself in this spot today.  I have to make a life from this point today.  I have to somehow show the people with positions I would like to have that I am no longer a lawyer with 25 years of litigation experience instead of a person with value that could add value to their organization, even though I am a lawyer.  

Some don't get it.... Tales from the Tri-Cities. Reallly School, you cann't help this child.

This was posted today by a mom.  Nicole has been mentioned here before. She had OsteoSarcoma and has had to have a bunch of surgeries and chemo and more chemo. She had to have a huge rod and a few screws taken out and an new one put in. There was bone grafting and lots and lots of painful stuff.  See, Cancer and Surgery and Chemo can kill a bone plate and then there is odd growing and can you imagine the sort of stuff a 11 now 13 year old has had to go through.  One of the bright parts to her day is school.  Just ask my daughter.

Nicole's mom posted this today:

It's Monday and I'm venting...along with everyone else! Nicole wanted to go to school today, so I sent her (she hasn't taken a "narcotic" since yesterday morning). They called and "wanted to make sure she's not on narcotics" (she's on a 504 plan for one and do they ask what "drugs" other kids are on?) This girls knows how to handle her pain meds and they don't make her "loopy" and no she only to...ok tylenol this morning! Then they said they didn't know she was coming and they didn't have a para educator on hand to help her in the wheel chair from classes...this girl is tough and can manage on her own but just might need some time! Should they question her wanting to go back to school after all she's been through! I have a few choice words for cancer and all that comes with it this morning.

Karen is much nicer than I am.  Here is a current picture of Nicole and some of the stuff that is going on in her leg. 

 

 

The WEb....

We are almost at a decade of time in Cancer World. Time of lost innocence and so many other things.  It has been a long time.  I realized I am profoundly changed by the experience.  Changed in the same way as going to law school. 

I was talking with someone about some job prospects and realized I no longer take my identity from what I do in a work location. (Unless it might be as a parent liaison at Seattle Children's.) 

We have been here too long.  I have become one of those institutional person's with such a changed view of the world I can't see it any other way again.  Let me out of prison and I still there.

I don't think it has helped that the web connects us in so many ways.  Facebook, Caring Bridge, and the many other sites.  Sites within sites. There are Facebook pages for moms and cancer moms and bone marrow pages and angel pages and.... With each new person I encounter there is a new flaring of the experience. 

It rolls around in us all the time. We are walking time bombs.  We are out in this vast ocean trying to make sense of all we see.  Sort of like the WWII guys that never talked about what they saw.

We connect, we kvetch, we give hope, we explain how to live with no hope, we encourage, we listen, we don't listen, we confer, we keep our fears close to our hearts. We recognize a good situation and know a bad one when we see it.  We try to say the right things and then hope we did.  We fix a lot of tea for each other, or coffee or margaritas...

Yesterday I read a post by a mom whose little girl died about 6 months ago.  Terrible battle. Terrible loss. Three years old. Mom is in so much pain. She feels the docs did not listen, that enough was not done, that she could have done something different.  Her pain is so so close to the surface. She reaches out every now an then when her heart is breaking and her pain is flowing out like lava.

There is no way to help her. A few words. A few moments of thought for her. A few____.  Who knows.  It sometimes is okay to say a few things and make an open hearted gesture but there is no way to really take away pain from another.  We all have to live with our pain and try to make it a positive part of our being. I think it is something we can do but that is what takes time. The pain never ever is gone.  It is transformed. Sort of like a bullet being absorbed by bone.  It is there. You can feel it, you learn to live with it.

So the web brings us the news, the good, the bad, the unsure.  I am still out on whether or not it is a good thing. I do know it helps to pass on the good and the bad.  The happy and the sad. It helps to know you aren't alone. 

Maybe the web is a good thing. 

Here is a picture of the sweet loved child I was talking about.  Meet Yen..

Letter to Mary-Elizabeth, via Ralph Waldo Emerson

Finish every day and be done with it.
You have done what you could.
some blunders and absurdities
no doubt have crept in;
forget them as soon as you can.
Tomorrow is a new day;
begin it well and serenely
and with too high a spirit
to be cumbered with
your old nonsense.

This day is all that is
good and

fair.
It is too dear,
with its hopes and invitations,
to waist a moment on yesterdays.

How can we not love this advice.

I am feeling like the local Beaver

I try to take the dogs somewhere everyday.  I figure it is the best thing I can do for both of us as I look for a job that will take me away from them.  So during my recent ventures I went to a place in Seattle called Golden Gardens.  It is about two miles from here, a park along the sound.  I am sure if we could review history tapes we would see this bit of land was created as a result of a big landslide when the hill gave way.  

They did  some work a few years ago and created some wetland ponds.  The water from the park is full of fresh water.  There are ducks, and other water fowl.  Pretty interesting group. 

Well the other day I was going down to the beach with the dogs and a tree was down over the path.

 

I was pretty impressed and thought someone had done this. Then I looked and realized it was a beavery. I looked around and saw the beaver has been very busy.

 

I did some reading and they will take down any size tree.  No matter the size. I looked and found this 

 

Proof of great industry.  This animal takes dirt, leaves and sticks and builds a home.  A home that is cozy, perfect for his family. 

 

When Meb was in the Hospital we did the same thing.  Took bits and pieces and tried to make a home away from home.  We had endless uses for BioHazard Bags.  They hold a whole piece of cheese cake with room to spare. 

 

Gathering familiar things around you during times of stress is a necessary survival skill.  We always had things we kept in the car for the very purpose when we were close to the hospital. Many of those items are in the bags we are putting together for the new families with Cancer Kids.  

 

Spent some time with Nicole and her dad yesterday.  Love them.  Nicole with hair, they wonder the hallways looking for those of their kind.  They are like we are, they can spot a kid with cancer and a suffering parent a mile away.  We will enjoy having them part of the efforts to help everyone in cancer world have a bit of home and comfort with them. 

 

  

Musical Offering by Bach

I mentioned the other day that I read odd books.  Someone asked how they come to me.  I am not too sure but they seems to sit around and wait even after I leave them in a corner for a while.

I realized most have some tangential historical background or are totally unusual sort of topic. Most books that I read head me on an adventure and some new bit of knowledge is squeezed out.  A word, a  concept, a vague reference to some sort of event.  I often stop to "look up" (pre-google term) what ever peeks my interest. 

This time it was the Royal Theme.  Those of you who have forgotten your Prussian history from the mid-18th century, Fredrick the Great commanded JS.Bach to his court to perform.  Bach was at the end of his life and Fredrick was in the middle of his.  Fredrick loved music and art and Voltaire.  (His father collected Giants but he let them loose). So one night after two days in a carriage, he handed Bach a line of music. Bach was known for his ability to do improvisations from a given theme.  This piece was very difficult and complicated but Bach managed to produce a Fugue  (another word for round sort of like Row Row Row Your Boat).  When asked to do six lines he said he was too tired. 

He went home and then produced what was called the Musical Offering.  A long piece of music based on the theme full of fugues and cannons and other such musical offerings.  All the music stuff always confuses me but I found something that really makes sense.  A moving picture of how the fugue works.  http://www.youtube.com/watch?v=KYouXtuk0T8  It is worth watching.


So I think I have my mom's endless curiosity.  I think it keeps us young if like Bach we take the notes that are given to us and make beautiful music out of it.   Even when we have been in the carriage way too long and we are tired in ways we never knew were possible.

 (Evening in the Palace of Reason, James R. Gaines. )

East Side Adventures

"I am certain of nothing but the holiness of the Heart's affections and the truth of the Imagination." -- John Keats

---

"WILD GEESE"
by Mary Oliver

"Tell me about your despair, yours, and I will tell you mine..."

---

---

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting --
over and over announcing your place
in the family of things.



This poem was read at Sallie Sear's service.  A lovely lovely poem.  Mary Oliver is rapidly becoming one of my favorite poets.  (yes I am a total geek.)  What really stuck me about this was the fact Tucker and I spend some time with the geese on the Spokane River. 

It was a quiet time.  We walked, we watched, we saw them land, heard the big swoosh.  It was a wonderful moment.

Mary-Elizabeth was so quiet during the service.  I used inappropriate humor, my daughter just wept.  She loved Sallie in a very real way.  I think she knew how hard it was for Sallie to gather the energy to take her to her appointments but Sallie "soldered" on with no complaint.  I had to scold the both of them about the after appointment shopping. 

Mary-E is doing great.  Good schedule, she handles her classes with structured deliberation.  She has a tutor and seeks lots of help. She works so hard at working hard.  She did refuse to show me any Zumba moves but then who is surprised by that.

Spokane was filled with snow but when driving with those that know how to drive in snow the ability to join them returned.  I was all over town, going up and down hills and even stopping.  Everyone should be proud.  No one was proud.  It was expected. 

I spoke too Soon.....

• Sallie Sears was the much much younger sister of a dear friend Debbie Sears. (ends up being 2 years).  She was always the little sister that hung around the "big" kids.
• At some point in the past 10 years with the advent of facebook becoming cool, we re-connected.  Sallie reached out and I reached back.
• We had been ships in the night and had spent time in the same city, never quiet seeing each other.  She returned to North Idaho and Spokane and worked at Sacred Heart in the pediatric cancer floor and was an advanced nurse practitioner.  She was a great friend of Dr. Flemehagen, Meb's Spokane doctor.

She came from this family of doers.  They didn't seem to have to work too hard at it they just did the right kind thing.  Kind works, kind deeds, kind suggestions.  They were just this wonderful family of people.  Everyone of my generation has a Chuck and Lorna Story.  We will have ample time to share them at Sallie's service.  

Sallie was a part of the trunk from the Sears Tree.  She sent Mary-Elizabeth a waiver for application fee for Gonzaga. She helped me connect to medical professionals in Spokane. She took Mary-E to appointments and shopping and just was there for her in a way few could be.  Sallie had lupus.  She understood hard and frustrating and prednisone and lose of trust in your body.  She knew and understood what ME went through. 

She really did what she could to enjoy her life in every way possible.  She did not shy away from the things that "could" be a problem.  She traveled and explored and sought warmth.  It was all a good thing.

She cared in any way she could.  When I mentioned the Wishing Rock Guild, she sent me Starbucks gift cards for the bags.  Just one example.  She always did what she could.

There is an empty place in the physical universe right now.  Maybe what happens when someone like Sallie leaves we all step up a bit to fill the void. 

Her final gift will be to gather many together for her service.  We will tell stories and remember and laugh and cry.  We will be sad she is gone. Glad she is not suffering. We will be selfish about her loss.  We will think about what we will do to replace the void.  We will peer into the future and know it is not the same sort of place it would have been with her gone.

Strangely Quiet on the Eastern Front

Lots of nothing.  No job interviews. No current prospects.  Nothing.  Quiet, unless of course you head to Seattle's China Town.  Then there are dragons, fireworks and dragons and red packets of little bits of money.  Lunar New Year, the year of the Horse. 

Oh dear, I think I just realized the Broncos are a horse.  This could be a bad thing.  I am already in trouble for failing to be excited about the big game.  I am going to work on trying to get up some enthusiasm for this upcoming event.  

Go Hawks.

She Reminded me she was almost 2 years old.

I am the one that usually replays the events in my head.  The ones leading up to something important, the event, the results.  I remember minute details and smells and where the sun was in the sky.  These things are seared in my head. 

For some reason, I am not connected to January 24th.  It was the day of the transplant.  We had two nurses, lots of pre-stuff.  Two small bags of cells, some weird smelling stuff, oranges squirted all over the room to mask the smell and then we waited.

I was not focused on the transplant.  I could care less about the transplant.  The transplant meant nothing. I wanted new cells to grow.  I wanted the whole thing to work.  For the week before I had watched M-E go back and forth to radiation, I had watched her receive high doses of stuff they won't even take in a toxic waste dump, I watched her withdraw from the world in an attempt to heal herself. The damage to her body and spirit was yet to come.  It was an awful time. 

She does not remember most of the post transplant time.  At one point she was shocked to find out that Whitney Houston had died.  Now I remember that post transplant time oh so well.  Bleak, cold windy, horrible time.  Horrible, terrible, horrendous time.  I have not been able to bring myself to even read the time of transplant. The anxiety it brings me is so great. 

She emerged.  She survived, she is thriving.  I focus on February 11.  That was when she her blood gave us proof it was happening as it was expecting.  Day 18.  That is the day I remember.

She is making herself brownies.  She is celebrating, she is getting ready to a 'terrible' two once again. 

I am just glad we are able to look forward to her threes, fours and forties....

Losing Things.... and other thoughts.

My book:  Sacre Blue by Christopher Moore.  I was reading, it was by my chair and it has relocated itself.  It might be buried in my bed but then if it is I won't find it until the next housekeeper Friday. On my last visit to the psychic she told me to quit reading multiple books at a time.  If I can't find my current book am I breaking the rule?

My favorite Fountain Pen:  I think it sought asylum in Canada.  I am calling the Hotel Sylvia to see if they found it. I have others but this one has such a nice nib.

My house:  It is still buried under Christmas.  I am making a good effort to dig it out tomorrow.  I have a hard time letting go of Christmas but I have to put it away.   I have waited for Take down Christmas Fairies and they are not cooperating this year.  When I think about it, they did not do it the last few decades either.  (Explore new business opportunity.) 

A memory:  one of my students asked me if I remembered putting one of my brother's jockstraps up a flag pole because he thought it was funny one of my bras was up the same pole.  I have been searching my memory banks and have no idea what she is talking about.  I am afraid I believe it is a true story.  Oh dear....

Goal for today:  Take the gunk out of the pan someone put in the BBQ at Thanksgiving.  I found that today.....

Behind the Scenes and between the lines

So it is housekeeper Friday.  I love the results of what happens today but it is hard to get excited about the prep.  I know the house is less cluttered and Christmas is exiting but it just looks like a mess.  No one is going to be amazed at the clean hall way or the fact there are fewer dishes on the buffet.  No one can see that all the napkins in the drawers are ironed and folded for next time. No one knows the shoes are in a pile on my floor so I can sort them and get rid of the ones too tired to continue the journey with me to my new someday job.

I am not complaining.  Yes I am lucky I have someone that comes and makes the whole house clean on one day.  I could do without but it is one of the things I cling to for sanity and for the ability to do other stuff.  Something about the clear spaces the fluffed pillows, the newly made bed makes it possible for me to do things I value that feed my soul.

It allows me to see deeper into a situation and to read between the lines.  Right now Katie Elliot is at Seattle Children's.  She is our friend with Relapsed Osteo sarcoma.  She had to have some lung tumors at the beginning of this week and she is not doing well.  Fluid in the lungs, vomiting, pain, needing more meds, more vomiting.  It is ugly.  Her story is contained here... 
http://www.caringbridge.org/visit/kathleenelliott?ref=nld

Now when I read today's entry, it screamed at me.  Fear, sadness, frustration, worry and more fear.  Darlis the mom, has been working so hard to not let much of that show.  She soldiers on like the best of us.  Her short, succinct message is a call for all of us to rally the Universe to do something good for Katie. 

Behind the scenes we need to put extra good energy (prayer) extra good deed for other's and extra positive thoughts. 

Full Moons and Wierdness

Full moons.  Often people scoff at the idea things are weird around that time.  I was a scoffer until I began to have extremely weird calls.  The one that convinced me was the guy who had signed a pre-nuptial. He had agreed to be castrated (too harsh for this early? if he cheated.  He evidently had cheated, had been caught and was worried about the consequences.  I assured him this wag completely absolutely against public policy and he would not be loosing any body parts at least voluntarily.


I often wondered who would have drafted such a document and then who would sign it.  I concluded it was self-drafted.  Signed after way too much mind altering drugs and alcohol and would have to be self-enforcing. 


Since that call some 20 years ago, I keep a wary eye on the moon.  I figure if the moon can move oceans it can have affects on smaller bodies and brains.  I never sleep during this particular full moon cycle.  Maybe it is the awaking from the food coma that is Christmas.  maybe my body is realizing with the 12 extra minutes of sunlight we are headed back to the time of great light.  Maybe I just worry now about things other than the end of the year.   I thought this particular time might be different because I am not worried about a trial or a deposition or weird clients getting weirder.


Worry is different now.  It is more focused on small children fighting cancer. The craziness that is their parent's lives.  I can't seem to get away from it.  I try not to focus on the horrible and the deaths, I try to think about the positive and the progress. 


Sometimes I just realize I am a bit like Big Bertha... Stuck.  Not able to break through the little 8 in steel pipe someone put in her path and forgot about.  I guess the lesson is their are small weird objects in our path that keep us from moving forward.... No matter what we have done to prepare or keep it from happening.  So in my case I will work on working the problem another way.  Call in the Engineers.

Someone always has it worse than you do.

Mom with a 9 year old child with a brain tumor.  Has lost several family members to cancer in the last 5 years.  She receives the results of her biopsies today.  Swollen Lympnodes, headaches, bad cough.  She has been seeking answers for three weeks now. She knows it is bad.  Her daughter has figured it out. As I have followed her journey I realized we all have the same journey.  It is noodles but the noodles have different sauces.

 It sort of works like this.  Something feels wrong, you try to find out what is wrong.  You are afraid of what could be wrong and then they torment you so long you don't care what is wrong as long as they just tell you what is wrong and give you a plan.   

Cancer world is not a place we learn to trust very much. This is the thing of nightmares.  Survival requires lots and lots of good friends, family and hope. Everyone needs a good a strong dream catcher in their arsenal.  And lots of coffee.

Hoping for few nightmares today for all that are in Cancer World.

Weirdness and Sameness

I am not sad when she returns to school.  I am so happy she is able to go and enjoy school and take Zumba, Bowling and Yoga.  She has her own Disney Bowling ball.  What could be better.

So I think a lot of what I do while she is here is manage her life.  I am that weird mom that tries to find all the bumps in the road and smooth them out.  It is habit.  Not necessarily a good habit. She lost a lot of her flexibility and ability "to go with the flow" during treatment.  She has a lot of anxiety and part of what I am supposed to do is handle it.  Kind of having a tired cranky 2 year old.  You learn how to keep the melt downs from happening.

So when she is gone, there is this big space that was created to protect and smooth things out.  Sort of imagine the bulldozer in the middle of the living room and waking up to have it gone.  A void.  Not a bad void. So it takes me a couple days for me to re-connect with what my life is at this point in time.  Someone asked me if I was sad.  I am not sad.  I am tired but should bounce back with a couple of days of getting things back in place.

A rhythm comes back quickly.  I just have to be better prepared.  I am just out of practice. The muscle memory is still there. 

So time to take the puppies out for a long walk.  Moon sort of out.  I find I have a hard time sleeping during this particular full moon cycle.  I just do. Lots of dreams when I do sleep.  It passes.  Maybe it is because the moon comes into my window and is so large in the dark dark sky. It is a weird time of year.... sort of like these berries.  No matter how often I see them, I still don't believe they are real.  

Back to School

I am hoping something is recharged.  Not me, not my bank account, not my laundry room. But I think ME is ready to return.  Gloves, slippers on the way to Spokane, 600 plus in books, two new note books. A couple of jars of Marmalade and lots of Thai Food.  She was packing until midnight.  Okay I did find a spare bra on the kitchen floor?

Things I did learn this time.  I must train for a week of appointments.  It is exhausting.  The back and forth, this hospital, that hospital, home, back to the SCCA.  I am out of shape.  Now being out of shape in handling your child's cancer world is a good thing, I just need to be better at it next year.  This will happen indefinably.  

So now what for me... I guess that is a good question.  I will work on working some more. 

Right now I am finishing my cup of coffee, listening to Lady Gaga and enjoying the dark of the morning. It is so so quiet. 

Something weird is going on but...

They are just going to watch it.  Nothing drastic. No bronchial washes or biopsy's.  Just a bit of weirdness that does not look like bad weirdness.

She goes back to school on Sunday and I continue my job trek and we count our blessings and say few hoorays.

Limbo...

http://www.yelp.com/biz/duffins-donuts-Vancouver

Been here before.  I bet we will be here again.

On Monday there was a pulmonary function test administered to ME. She can't draw in a full lung of air. She is not taking good deep breaths because it hurts. She notices this now.  So CT, nasal washing, Fungal blood draw.  Now she sees the Pulmonary Specialist.  The next step is a sedated camera and or fluid put into her lungs to see if they can further identify the weird thing.

As I write this I am getting anxious.  I am going for pocket of healing left over from a cold. 

For once I am hoping the universe will concur. 

Oh, Duffins Donuts are amazing.  Never pass up the chance to have tortas, fried chicken, Vietnamese sandwiches at midnight.

Canada is different

Bus: Sorry out is service

Eggs: served in egg cups

Rain: out come the umbrellas

Hockey:  front page news

Down the Rabbit Hole we go.....

Monday starts Mary-Elizabeth's Two Year evaluation at SCCA. 

On the good side, she is here for this evaluation.  Lots of losses these past two years.  Any one that scoffs at miracles should just look at this smiling face.

 

She is a true survivor and proof there is a God.  Now I don't know his name or hers.  I know it is not luck or chance and extra prayers.  Some thing in this universe helped us through this process.  I will remain grateful and cognizant of how blessed we have been.

 

So back to tomorrow, blood draws, scans, pulmonary function tests..... pick a test she will be having it.

 

The purpose of the tests are to see where she is in all of this. 

 

It should be good, she feels good, she is looking good.  It will be good.  

 

Because they gave us a day off from testing, we are going to make a mad dash to Canada for a Hockey Game.... Should be quite an adventure!!! But then we have been in this Rabbit Whole a long time and you never know what might come your way....

 

 

Sometimes you do get a Win

From the Moment you enter Cancer World they begin to help you manage your expectations about the life of your child.

Less Socially adept
Life long secondary cancer risks
Less life expectancy
Infertility
Loss of Executive Functioning
Problem with complex problem solving


Yeah, the list goes on.  They have written books about it.  They hand you one when you transfer to Long Term Follow-up.  Nice young gentleman playing basketball with one leg gone.  It is harsh.  But then all of it is harsh.

We won't ever trust again.  Not in a significant way.  I know deep in my heart that this is not the end, the last battle.  There is still something that will appear when they roll the end credits.  But with time, you come to expect it.   Its okay and it is what it is and today is good.

We knew after Spinal/Cranial Radiation lots of gray matter was destroyed and new stuff was not as present.  It takes 3 to 5 years for the effects to make themselves known.  It was sort of frightening to watch IQ plummet as the years passed.  Thank-God she had some extra to spare.  Then there was the total body radiation.... at 19 she had her total lifetime number of Rads.....

So School was a bit scary.  Really Scary.  Gonzaga made it possible for her to take two classes during her two year recovery.  They went well but then she had unlimited time except for tests.  I relaxed when a problem did not make it to the professor after the test.  He let her know and she was able to do the problem in her head. 

So first time back in school.   A light 15 credits.  She had taken one of her classes so she would not have to take 18.  Calculus, Physics and lab, Materials and lab, Circuits lab and, Economic.  Well the grades are in and she is sleeping like a baby and feeling really really smart.  Calculus was not flunked.... C-  We can sell the book now.  The rest.... A's. 

My conclusion.  The extra total body radiation did a lot of good. She really struggled with Physics her freshman year.  Yes, bring on the Radiation.

Things take time...

I should know that by now.  Time has been good and bad to us. We all know it keeps ticking and ticking.  We have zoomed through 2013.  I am so glad.  13 is not my favorite number.  But we have made it to 2014.  It should be a much better year.

We are so lucky to be here.  Give back time has arrived for me.  I have items for the survival kits.  Trader Joes bag for laundry, going for showers, a million uses.  A good mug for tea or coffee. Tea and coffee.   A Starbucks gift card for coffee and food that is necessary to survive the bad bad food at the hospital.  A chakra wind chime to calm the pumps on the pole.   A shaker full of Cinnamon Sugar.  A letter with some secret information.

Tomorrow we will give them to someone that knows who needs them. 

This is a start.  A small but I think good start.  We shall see if the reception is what I hope it to be. 

A start.  It might take some time.  But then all things take time.