Wednesday, January 22, 2014

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....

Tuesday, January 21, 2014

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.....

Friday, January 17, 2014

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...

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. 

Thursday, January 16, 2014

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.

Tuesday, January 14, 2014

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.

Monday, January 13, 2014

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.  

Sunday, January 12, 2014

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. 

Thursday, January 09, 2014

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.


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.

Tuesday, January 07, 2014

Canada is different

Bus: Sorry out is service
Eggs: served in egg cups
Rain: out come the umbrellas
Hockey:  front page news

Sunday, January 05, 2014

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....

Friday, January 03, 2014

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
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.

Wednesday, January 01, 2014

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.