Mary-E wrote a short statement for a Scholarship

Application.  Sometimes the kids say it best.

 

Some of the hardest times in life are the teen years. We hit puberty like a brick wall. It’s a hard, but its "normal" and part of life. From the first day I found out I was diagnosed with cancer in 04, my priorities changed and my "normal" life was taken. I was looking forward to being a teen, but life had different plans. I had years of treatment including radiation. I had to have tattoos to align me precisely as to not harm me. I walked into UW hospital, checked in and sat down in the quite waiting room, giving me time to think. The word "tattoo" made me think of a biker man with a leather vest and tattoos. My name was called and after winding through long hallways we entered a room to find, not a burly biker man with lots of tattoos, but a short dorky man with a lab coat and glasses too big for his face. As they worked, they asked about me and I told them my story. As I did, I realized I would never have a "normal" life. I had to learn to deal with a lot and had to grow up fast. Most teen girls worry about pimples and here I was worrying about procedures and side effects. I realized I wanted to be a normal teen that had acne, had to worry about shaving, and had to spend hours on hair. Before I knew it, I had tattoos, which my mom gladly paid for. For the rest of my life I will have them and they are a universal symbol that I was treated with radiation. They show me what I have learned from my life. I didn't think my cancer would relapse making it so I would once again have to use them, but it did and I am once again dealing with cancer world and its many struggles. My process of learning has been a hard one, but it’s one I enjoy every day. I know what’s important, what to appreciate, and what to notice in life. I have become more determined and don’t take life for granted. Having cancer has made me want to go back to school that much more and make something of myself. I have also accepted I wouldn't be the strong persevering women I am now if I was “normal”.

Oh, Level Five,,,, WE get there by being Angry....... Boy are we

In the swamp-like water of the river Styx, the wrathful fight each other on the surface, and the sullen lie gurgling beneath the water, withdrawn "into a black sulkiness which can find no joy in God or man or the universe."

I am one of the Wrathful..... fighting everyone all the time with little or no control over what I say or how I say it.  

I try to be nice.  I try and I really do but there is so little of my being protecting the angry hostile sullen gurgling being that lies beneath a rather calm exterior left.

When your child reports someone make fun of their shoes most moms have an instant reaction to crush the offender.  It is unreasonable and complicated but it is real. Cancer only makes it worse

There are many paths to anger.  Each of us arrive there at different times and different reasons.  Frustration, disappointment, fear anxiety (DAFF).  We have to quickly leave those big four or they will simply eat us alive.  Anger is the release, the pressure valve.  How often do you hear the someone "vented" their anger at the poor barrister. 

By the time we are sitting in the emergency room or the doctors office after the blood tests or the "scan" there is so much fear and anxiety built  up anger is so close to the surface.  It has to come out at some point and head in some direction.  Something at some point has to give......

I think back to all the poor recipients of my wrath.... I am really good at it.  I can take down the best of them with a rage and a vocabulary that is scary.  Just ask Josh, the poor Security Guy.  I don't want to be a Children's so when I have been there twice in one day and he has seen me leave with Mary-Elizabeth an hour earlier, I am not nice to him when he decides I have not given him enough attention.  I had my badge, I had it on, it is current and he misses the chance to see it when I walk by him, he was not expecting my invective when he tried to stop me.... big mistake.   He won't forget who I am again....... 

We all have a certain length to our fuse.  My fuse was beginning to lengthen again but it was certainly snipped when Cancer part 2 rolled around.    My consolation is there will be lots and lots of my peeps on Level 5.  I am sure I will be able to fight with them and when that is just too exhausting I will slip down an restore myself with the sullen.... 

Here is my apology for all the snarky, unreasonable outbursts and down right nasty things I have said and done over the past few years.  I wish I could say I was done with all of that but we seem to keep keeping on....

Took a Trip to the Edwardian Era

I need to do that every now and then.  Watched all of Downton Abby in a couple of days.  It does something to be transported to another place and another time. 

Love learning new things and seeing old worlds.  It makes me realize how fortunate we are to live in this time yet hope that in my former life I lived in the grand world.  The one with fabulous house and grand staircases and amazing furniture. 

A bit of escape is good.  Of course I want to roast some venison.....  Which I have in the freezer.  Better get out the chicken....

Greed.... Level Four: We just want to be back to Norma

Virgil:

 saw multitudes
to every side of me; their howls were loud
while, wheeling weights, they used their chests to push.
They struck against each other; at that point,
each turned around and, wheeling back those weights,
cried out: Why do you hoard? Why do you squander?' "


 We live and die by protocols.  Long pages of stuff that determine what is next.  Dates of treatment, types of treatment, rules about when there will be treatment.  It is pretty amazing how difficult and complicated it can be for all involved.  More then once I got us prepared for a hospital stay and then the "counts" were not right.  Or we just went in for a blood draw and ended up staying for a week or two.

Oh Cancer parents are greedy and we hoard and squander like the best of them.  We pursue health and any small moment of laughter.  But most of all we want to be normal.  We want to look at a calendar and know that what we think is going to happen will happen.

We mostly want certainty and we live in the most uncertain of all worlds.  The world where nothing looks right.  Sort of what I imagine an LSD trip would be.  Everything is the same but just off.....  We are tired of not knowing what is going to happen or in some cases not happen. 

A hard part of level four is the isolation.  Most is self imposed but some comes from people being afraid to ask you what is going on....   No one wants to ask the question and find out how bad things have become.

My sister called and asked what was going on and I realized we have been doing nothing.  Mary-E is processing and in a dark hole.  She sees no reason to get out of bed right now.  It takes her a while to figure out things but there is an appointment next week about her GVH and she is worried.  She has failed to taper 3 times and really really wants off the prednison.  She knows it eats your joints and causes other mega problems.  So she withdraws, I try to tempt her with short forays into life.  It will be fine.  It is just a bit of a rough patch. 

For the record, I never took LSD and the day the guy that invented it gave it to the medical students at GW.  My dad was in the hospital recovering from appendicitis.  

Level Three..... gluttons: First Treatment Way too much Chemo

The "great worm" Cerberus guards the gluttons, forced to lie in a vile slush produced by ceaseless

 foul, icy rain.   Just as lust has revealed its true nature in the winds of the previous circle, here the 

slush reveals the true nature of overindulgence in food and drink, but also other kinds of addiction.


Yes, been here.  Felt the foul, icy rain, the mud.

It all becomes way too much and one feels trapped under the paper, the internet research, the meetings and conferences the Waiting.  works, the endless blood tests, the endless..... shot, pill, procedures..

There are time we get to escape but sometimes it seem and is endless.  

There is so much about having a kid with cancer that we don't really understand and maybe go over board on things.  

We all have our "cause".  I am about the bad food service to the children at Seattle Children's Hospital.  Some are about the fact their child only has home tutoring for 18 weeks but cannot be in school and so she looses a year of school.  Some are bound and determined to remind those that park in the parking lot, they are a huge gigantic mega truck and not a  compact.

I have to admit to drinking way too much coffee.  It might have been a way for me to give myself some time away from the room where unspeakable, horrible things were being done to my child. 

We all have addictions.  Overzealous obsessions besides Purell and over cooked food.  

I have cut back on coffee.  I think it is a start on the way to escaping the icy rain and slimy.

Wonder what the Pope did?   

Lust....? Really. End of first Month when you lust after normal!! Dante must have been a Repulbican.

Second Circle (Lust)

Gianciotto Discovers Paolo and Francesca by Jean Auguste Dominique Ingres

In the second circle of Hell are those overcome by lust. Dante condemns these "carnal malefactors"^[9] for letting their appetites sway their reason. They are the first ones to be truly punished in Hell. These souls are blown back and forth by the terrible winds of a violent storm, without rest. This symbolizes the power of lust to blow one about needlessly and aimlessly.


Lust.  I really think we have to re-thinking this.  Of all the things in the world, this is the second level. 

"Carnal Malefactors"  have to love those words.  How can you not.  But I am afraid part of this does apply.  Every parent in the world has felt the punishment, even if they didn't deserve it.

These souls are blown back and forth by the terrible winds of a violent storm, without rest.

Boy if that does not feel like our lives.  Some days there is just no relief.  And when you feel like you have escaped another gust comes again and batters you even worse. 

We have had one of those weeks.  It all resolved around food in one way or another.  

So ME is on several drugs that make her kidneys stupid.  She "wastes" magnesium.  So to fix that hole in the dike, she takes 1200 milligrams of the stuff and eats lots of popcorn and dark chocolate.  It also makes her very cautious about the amount of fiber she eats because it causes some very undesirable side-effects.  I am buying white bread for the first time since 1883.

She is going to be put on Rat Poison.  Warforin.  Lovely drug but it will let her body heal from all the shots and gigantic, continent size bruises.  No shots, that is good.  BUT the levels have to be steady.  Rat Poison inhibits Vitamin K which is made in your stomach.  So there are things you cann't eat like spinach and all other green leafy veggies.  Cranberry juice, avocado and soy lots of other things.  She can eat all those things but has to do so in the same amounts each day.  If she gets sick or more active that changes things.  She has to have a finger poke every three day until the levels are figured. 

Then one of her drugs has made her triglycerides go way way, sludge for blood, high.  So what should she eat to help with that:  Fruits Veggies, lots of greens, low carb, non-fat dairy.... Well lets see all the stuff you can eat here are eliminated by Rat Poison and Magnesium....

It is pretty much Brown Rice and Salmon, three leaves of spinach and some green tea, in regular measured amounts.

"What about pizza?"  Can you make it yourself with low fat ham and some non-fat cheese?
Oh, did I mention, low carb....

It was too much tormenting windy gales for one day.  She just went to bed and cried. 

"Mom, I do everything right.  I take my meds, I follow all, well most of the rules and now this.  I am afraid to eat anything!"

Pancakes, no butter, no bacon for breakfast.  I won't talk about dinner.

She feels under attack.  We will spend a bit of time working on finding out what works...  French bread has no fiber.  Salmon is wonderful.  A bit of white rice won't kill her. 

On a better note, no asteroid hit the earth.  That would have ruined our day.

Nine Levels of Cancer Hell.... Pre-Diagnosis : one Level at at time.

I always looked at Dante's circles of hell with a certain sort of skepticism  Mom told us that there was no Hell.  I love my mom and I am sure she is right.  But I am not very worried about what happens after this lifetime right now because I have been way too busy fighting the hell I find myself.  

Cancer World has lots of levels, all of them are hell. The first level is Limbo.  Most people in Cancer World spend some time in Limbo.

Dante described it as:


In Limbo reside the unbaptized and the virtuous pagans, who, though not sinful, did not accept Christ. Limbo includes green fields and a castle with seven gates to represent the seven virtues.


We spent 2 months in Limbo before there was a diagnosis   It was defiantly hell.  Tests and more tests and more waiting.  Some don't enter Cancer World this way.  They are plunged to much lower levels very quickly and with no warning. 

We all return here for some respite. Waiting for numbers to recover, waiting for a scan to be read, waiting for the results of a bone marrow aspirate.  Wondering if the new bump behind the ear is a return of cancer.  We all spend lots of time here.


None of us think this is a good place, even it there are castles and unicorns.  It is still Hell and there is no good reason for us to be here or to have our children here. 

No amount of convincing would ever make me believe there is a God that would let a child, an innocent, spend time in a place with no hope of escape.  Maybe it is this sort of anger propelling all of us forward trying to escape Cancer World in one piece.   We don't believe we should be here and we want out. We don't care if there are servants and lackeys and unicorns and pastry chef's.  We don't care if people will take us on wonderful fabulous trips and let us sit in special papers to see Madonna!  

We want out.  

Guliany Our New Turkish friend

unfortunatly i'm the 4th person in this clinic -i mean double cord blood tranfer- but in our country there is no experience about that.. the doctor who is living in israil was recommended my transfer protocol.. my own doc. consulted him.. and i don't think that they made this special tests..

and also there is no flavoured water in markets :)) there is lots of brands of water but just still water.. i started to eat a little.. 

do you have any idea about if the engrafment not happen?he is my husband.. we got married just before 2 days ago of the relaps :( this photo taken this agust in my first remission.. now he is in İstanbul (has to work) and me at Kayseri.. 

i miss him so much..

I have been corresponding Guliany.  She had a double cord blood transplant about 16 days ago.  She reached out to me because she found the blog.  When I read this e-mail, I began to count my blessings.  

She is number 4 in her country to have a Double Cord Blood Transplant.  We are so so lucky to be in Seattle. 

Looking for anyone going to Turkey any time soon.  I want to send her some MetroMint Water..... 

A certain Kind of maddness Creeps in after a few Days at the Hospital

Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days.  Max.

First you have the worry of being there if it is not a regularly scheduled admission.  You are there because you child has some unusual unknown bug.  While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is.  They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows. 

Lots of times nothing grows and you are still stuck.  If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack.  The shot gun approach.  These kids are then stuck until they finish 14 days of the stuff because usually it is IV.  You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out. 

Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf.  It has been pre-tested to see what works the best.  Then you wait again, sometimes the days start over.  

At that point you know for sure that you are there at least two weeks.  But.... it might be longer depending on how low the ANC is at the time.  If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more. 

So you wait.  You wait for every blood draw. You wait for every temperature reading.  You wait to see what comes from the kitchen. You wait to see if she chooses "the dress".  You wait for rounds before a shower because they might have some news. you wait for the platlett YOu  wait for the other closet of shoes to drop. YoU wait for the next does of meds.  You wait for a pint of blood because the bone marrow is not working. You watch more  Dark Shadows and fold more crane. 

During the waiting you worry.  Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child?  Did we make the wrong/right decision? Or my favorite:  Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?  

When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable.  You go in, you know the drill, you know the goal.  Because you are headed into a certain specific direction it is survivable   This is what we have to do to go home. 

It is when you have no idea, no control, no sense of when it is going to end.  If there is a bug then you have to be in isolation   (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room.  Everyone has to gown up. Your secret supply of real food has to be heated by a nurse.  You cannot even go to the family room and fill your water pitcher.  It is a fresh kind of hell.  250 square feet with a bed, a chair beeping things and lots of other crazy stuff. 

The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.  

The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing.  Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms.  They are awful. I don't think they have touched them since the 80's  Mauve has gone there to die.

 The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago.  There is a room where 4 people stay that has not had hot water for more then a year.  "too  much to fix it" I was told by the plumber to just use Purell.  Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?

Oh, dear, see I still suffer from Long Stay in the Hospital PTSD.  When I read about someone being there and slowly  unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place. 

Okay, enough.  Just know until you have done one of those hard long stays, you will never ever understand.  But thanks for trying...... 

Bits of Glowy clouds

They are floating by the window.  Not able to capture but enjoying them as they slink by.

We are heading to the museum today.  A place to walk, enjoy, appreciate at it's best.  She secured her housing and is working on contacting her teachers.  She is feeling secure enough to plan for school in August.  

It is going to take a lot of effort to send this child out the door this time.  She will fight me like all "going back to college" kids and I will push but this time there will be more hesitancy on my part.

As she buys rain boots and other assorted "needs", I am planning in my mind what we do for her to make sure she is safe.  This time I will be having meeting with the medical personnel as well as Father Bill.  I will be meeting with her BMT doctor so we don't have any issues with her ongoing care.  I will be also lighting candles and gathering a bit of Holy Water. 

I have lots of months to prepare her for this event.  I am not sure who is more excited.  I think I am just thankful she is able to go back to school. It makes these past two years just unfortunate "Gap Years".  

I think returning to school is the best way for her to heal.  Every time her peeps come to see her or we see someone it makes her so happy. Skype, Facetime, Facebook, all are not enough human contact for anyone....

Go ZAGS

Sometimes you Need the Black to appreciate the rest of the view.

I realize now that when Cancer Part I was happening we were in our own little world.  I realize now that we spent very little time at the hospital.  We made a few friends but it was very much a solitary journey. 

Cancer Part II is not solitary.  Because it is so so intense, we have met lots of families, the internet has connected us with lots of families and it has put us in a very different place.  

I have been pondering my newly gained knowledge about Post BMT relapse.  I was not quite myself in class the other night and someone asked why.  I tried to explain without being DebbieDowner and they asked whether or not I "KNEW" Owen and his family. 

I made me think about the question.  How do we know people? What does it take to know someone? Is it enough to talk on the phone? Have coffee with them?  Is it enough to spend a vacation with them, a night in the hospital?  How does the internet connect us?

I think some shared experiences make the connection.  We "chat" with people all over the county and in my case world.  We "spend time" with people online.  I am always drinking coffee so maybe there is a connection.  

We learn and grow and expand our knowledge and human connections with the stroke of a keyboard.  Our world is so much more complex given the expansion of the internet.

It fills in the blanks of the canvas.  Sometimes the spaces filled in are black....  But the blackness is what makes the rest of the world come to life. 

I sometimes hate learning things.

This week-end I learned a fellow BMT kid had relapsed.  I let myself believe relapse could not be possible.  I understood new cancers are a huge probability but after total body radiation and high dose chemotherapy resulting in the total death and destruction of the bone marrow it was over. 

Heeeeeheeee.  I am wrong.  Sometimes it comes back and Doctors write about it and study it.

British Society for Paediatric Palliative Medicine

Approaching decision-making after bone marrow transplant relapse in acute leukamia

Palliative care is not often found at a place like Seattle Children's hospital.  It is sort of like the food.  Lots of lip service an no real commitment.  Palliative care is best understood in Hospice realm.

I have seen and I understand wanting to do one more thing, the magic thing that will make it go away. The magic deeply colored chemo just sitting on a shelf that will most certainly turn it around. I think as parents we just don't want to give up.  We brought these children into the world, we are not going to let anyone or anything take them out without a fight.

This is a hard one.... A hard lesson to learn. 

She is doing great

Skin a bit hinky but it comes and goes.  More energy and she is baking.  What more do I need to say?  She feels better.  She feels like she did before Christmas Eve when the flu hit her.  I could not ask for more.

If you think I am enjoying a bunch of warm Mary-Elizabeth Sierra Lanham cookies, you are so so wrong.  She is mailing them to all her friends.  I seldom get cookies.  Something is wrong with this picture. 

Quiet Moments.

are sometimes scary.  It is during those time the darkest thoughts can creep in and take over.  They are also the most creative and most productive. 

This is when I have these thoughts that in the outside world make no sense at all. For example, today I was drinking my coffee and was checking in on my Facebook page.  Small but present post. 

There's a new post about Owen on Caring Bridge http://m.caringbridge.org/visit/owenohara

Owen is the child of Jackie. They live back east but the internet has connected us.  Owen had a transplant, he has been sailing through.  Life has been good, they are getting ready for a Make-A-Wish trip. 

Then BAM..... Leuikemia is back. 

It just made me furious.  Maybe because of where I sit, I see this sort of thing but "Why in the Hell". 

I know there is no one to blame.  I am certain there is no God or Supreme being involved.  I know "things happen"  but for most of our kids, our cancer kids, they have had ENOUGH. 

I wish cancer was sort of like the mumps.  You get it once and then you are done.  You spend a few days on the couch listening to radio dramas (I had it when I was in 3rd grade and there were still radio soaps) and then you are done.  I think Cancer is more like Chicken Pox.  You have it, it is over but the threat of Shingles lingers on and on until your die.

I have had enough.  I have had enough of relapse and new spots on scans and children dying.  It is time for all of this to go away.  I want to return to a world of Unicorns and rainbows and sparkles and shiney things.