Why Mom's just don't get over the death of their cancer kids...

I am sure not everyone experiences motherhood the same way.  I know the instant I realized I was pregnant, I had a bond.  I was attached.  Of course she was sort of attached to me but I was attached.  It was like nothing I had ever experienced. My life changed in a way I didn't  understand.

I often hear about Mom's that had to "bond" with their child.  I wonder how that happens but I know even in those situations, the bond is there.  After we are clearly and permanently attached, then we have to become unattached so the kids can grow and mature and find their own lives. 

While the leaving the nest part is gradual, there are times the process is like lighting.  7th and 8th grade is one of the big pulling away times.  A time they are finding out who they are and how they fit with all of their friends.  It is a time many mom's mourn the loss of their babies but it is part of the process.  Little by little we let loose, they grow bolder, they develop out of family friendships.  It creates a place in their lives, creates a crease in the bond that allows a clean break to be made in a painless but significant way.

The entire process is mess up if at any time they enter Cancer World. Instead of a child gently pulling away, the Mother/Child bond intensifies exponentially.  All of a sudden not only are you caring for your child in an intense 24 hour a day, seven days a week way, your child is sick. You are on an adrenaline rush that lasts for several years.  No breaking away, no time to think, constant, intense caregiving.  It makes the bond so so much tighter.  Just imagine a strand of thread as the normal bond and a 10 inch cable made out of spider web as the bond created after Diagnosis. The cable eventually becomes the size of a 1000 year old Red Wood Tree. If they get better, the bond is always strong.

So here is the situation.  Child born, bond created. Child grows, child moves away in the natural course of things.  Child gets Cancer child moves back, no breaks not natural cut off, bond becomes super natural in order for the child to survive.  

But what happens if child dies?

Nothing is gradual. Nothing is normal. Nothing prepares anyone for the death.  It is like amputation without anesthesia.  And when it is done, the final most abhorant break in the bond occurs, Mom's are supposed to just go on. They are to be strong and brave and act like nothing happened.

Like many in Cancer World, we have seen the fall-out of the amputations.  I still hear from Guliany's mom in Turkey.  I hear from Shannon, and Kate and Kristi.  I see posts from Nyla's mom and Mario's moms.  I see the gut wrenching screams and pain and suffering of these Moms.  Jackie and Sheri and  Elizabeth or countless more.  Mom's that did all they could to keep their children with them.  Keep the bond going. Keep the connection.  

I don't perceive there is a difference in whether or not the child died suddenly or it was a long process.   They see other children with exactly the same flavor of cancer, same treatment and some kids do fine.  Some make it out alive.  They scream..... in pain about the unfairness of their child's death.  We need to let them scream and not make them feel like they are failures for not "moving on".

There is no way to figure it out.  Just don't ever assume that because the child died a year ago, two months ago or 40 years ago it is okay to ask how the mom or dad got over it.   The hole might have been walled off and there might be appearance of Normal but those parents could still use a hug. A hungry listening ear and understanding. 

So much potential. So much loss. So sad for everyone. 

The "Strength" Cancer Mom's Exhibit Is not What You Think it Is...

Stay Strong

Hang in there

You have an amazing attitude

Your such an inspiration

You can do it, you have done it before

Hold on it will be okay

You're so strong....

Your a trooper...

I read these statements over and over again.  

I don't know about other Cancer Mom's but it is all a farce.  There is nothing amazing about being a Cancer Mom.  We are not trying to show the world of an example of how much we can handle. We are not trying to get be a trooper.  We are doing what you see us do because we HAVE NO CHOICE!

We are doing this because we got the call.  The "we regret to inform you" call. The call that slammed our lives into another universe.  No chance to pack. No chance to organize. No chance to say good-bye to our lives.  One second life was just fine and the next we were on the other side of the universe having been pulled into the Black Hole of Cancer World. 

We are amazing. Some of us are positive. Some of us are just out there, screaming about what it is like to have a child with cancer.  Some of us retreat to some dark, sad, scary place and never emerge again. 

 I have to write.  I cannot keep all the anger, fear and frustration inside or I would just implode and become one of those really bad headlines. 

Nice Quiet Mom Explodes at the ..... fill in the blank.

Today there was some good news, someone is waiting for news, someone is remembering good news that has gone sour.  Everyone is scrambling to make them feel better while all knowing how fast it can all go very very wrong. 

These mom's are strong, they are able to hold on, they are the most amazing troopers you could ever know.  But their strength is a different kind of strength.  They are not lifting a million pounds or taking some force and changing the world, they are simply standing in front of the leaking dam and holding it together.  
They are using all of their strength of will to keep the dam from completely collapsing.  Some days there are more leaks then anyone can clog. Some days a nap is possible. The thing is they know they can never, ever, ever stop from holding back the dam.  

They looked away once before and took a little vacation or went to a play or went out to dinner or learned how to speak French. They did something fun and the dam collapsed.  

These are special people with a strength and deep core of power only few every have a chance to use.    But they are all looking for the same result.  A chance to have their child "return to normal".    

Here's to Normal.

I'm Stuck....

In a weird difficult and not the most healthy way.  I feel like there is collar around my neck and if I get too far away, I am yanked back.  I reach to the edges of the universe only to be snapped back in with great force.  

I push Meb out as far as she can go and she seems better at free floating than I am.  So, every single day, I try something to free myself from the deep gooey morass of Cancer World.   

List of things to do.  Then one appointment with the Kidney Doctor and I loose my ability to finish the simplest of tasks.  Going to try again.  
Stuff in places it should not be. No apparent reason, waiting for more analysis.  Possible way to help the kidneys be smarter, waiting for the end of Prednison and Siriolimus.  Best medication also lowers blood pressure so they don't really want to give it to her at this point.  Child would be a slug.

So More waiting.  

I am going to do some laundry, my mom is coming to visit and will be going to see Cher with Mary-Elizabeth. Should be a fun week-end. 

Ups and hopefully no downs.

Childhood cancer really is rare in the scope of the 300 million or more of us in the U.S.  Some tiny bit of the population.  Sort of like Medulary  Thyroid Cancer.  But once if shows up in your life all of a sudden everyone has it.   You make connections with those that have it, you run into people that have it. It consumes a part of your life.  

Today Meb had an appointment with our lovely Seattle Children's Bone Marrow Doctor.  She is moving to Portland Maine and this was the last time we would be seeing her. By Dr. Pollard.  It was a great appointment, the taper is working, most days. Meb is getting allergies because she is weaning off prednisone.  She has some spots but they have been around less than 24 hours and we are hoping they will subside.

Her kidneys are unhappy but then we have been down that road again.  Hopefully she will not continue to loose kidney function.  Life is good.  

So while I am sitting there I spot a parent that was on and off the floor during Meb's transplant. He is stressed. He is freaked out. Then I saw his son.  He is older than Meb and he is bald again.  Crap... he is back in treatment.  I didn't ask.  There is no way this is a good thing. 

I just can't get away from it.  It haunts me. It terrifies me. It makes me crazy.  It's a slap in the face.  The ability to believe this will ever ever be over eludes me.  By ignoring what goes on around me I can sometimes forget.  But not in a convincing way.  I am just a bundle of freaked out Mom...  

But on the other hand Lulu is responding.  Really responding.  Her story might turn around.   Sounds like her body is fighting. 

Watch out here she comes....Lullu came back from MRI they could not do it because she wouldn't stay still!!!! She opened her eyes and looked at me. She is responding to me...they had me ask her yes or no questions but no response but when I tried to take my hand away so they could get in there she clamped down on my hand and still holding on to mommy...they are ordering ultra sound on right arm where pic line is because it is huge they are afraid of blood clot....but I'm so excited about her moving I'm giddy!! And She Knows My voice...Will Update Later But Celebrate And Dance Because Lulu is Responding And SHE Hear

s us!!!! And we have 11.7 hemo 5k platelets 6100 white blood cells and a 3200 anc.....she is doing it!!!! Still on 70 percent ventilator

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Sometimes it only takes ONE

They talk about the power of one.  One person taking a stand, one person making a positive step in the right direction.  One prayer, one gleam

 of hope.  One. Two are better but then we can all wait for the next one to come along. 

So Lulu has one.  A single white blood cell.  Now it probably means more but as a Cancer Mom, one it enough.  The bone marrow is back working and making the ONE of the right kind. 

There is sign of life buried in the tubes and beeps and whistles. 

Lulu Ysarua Martinez pupils reacted to the light...eeg showing movement it's slow but better then yesterday...all sedatives are off..kidneys are struggling but putting out...xrays showed a little improvement on lungs and we have 1 white blood cell....doctor said she is still very sick but these are all good signs...she hears the prayers and is feeling everyone's love.. we read your posts and comments to her ...she is fighting...she is fighting... she is fighting....come on lulu shine on through..

ONE, sometimes it all we need. One small step. One small movement. One..... step towards a very very very long recovery.

Music is back.

I never realized it was gone but it has been gone for a long long time.   I am not sure why but it was. 

My dad was an adventurer.  He saw the world as a place to learn and explore.  He was curious and always had his nose in a book.  He carried that curiosity with him throughout his life.  When he went to college he squeezed everything possible out of it.  He took lots and lots of different classes, Music and Art Appreciation, Photography to name a few.  When we all went to college he encouraged we explore our passions.  

I took a few classes, lots of history, Zoology even though it was not in my major or minor. I did take Music Appreciation.  I learned a lot in both classes.  I fell in love with certain pieces of music.  One was the Mouldau a piece by Smetana.  It is the musical story.  The river starts as a small stream and moves to a big wild river, then on to a stolid reliable river and then ends up in the ocean.   

https://www.youtube.com/watch?v=kdtLuyWuPDs

It made me listen to music differently and in a way I never had before.  I learned about recurring themes and refrains in symphonies and other such pieces of music.   

I have historically loved lots of different kinds of music.  No fond of Rap or long guitar rifts. I think mostly because I don't like loud banging.  Enough of that goes on in my head most of the time.  I don't need to have it enter from another source. Some Jazz is okay, not all.  Squeaking does not make me happy.    But some music resonates with me in ways I don't understand or why some and not other.   Some melodies, some lyrics, some passages.  I remember sitting in front of the stereo player listening to musicals we owned. 

Over the past few years music was replaced by NPR.  Seldom did I play music in the car.  If I am traveling long distances I most often have Pod casts playing or a book going.  If you asked me to go to a play I am much more likely to go than to a listen to music.   

Something started to happen.  Some music started to creep back in.  It is seldom background noise, it is something that takes part of my brain to listen and it has not had any energy or extra power to do so for a long time. I think all the processing nooks and crannies have been filled with ANC, BMT, CPR, NED and all the rest of the stuff in Cancer World. 

The ability started to wake up bit by bit.  Patty took me to a U-2 concert ( not YouTube) I went to see Char, I found time for Mindy Smith, Rod Stewart finally came to town when I could see him.  James Taylor and Carol King performed together.  I made the journey to see Dixie Chicks.  Bit by bit.  Noise gave way to music. 

One of my friends mentioned he had seen the Vancouver Symphony play James Bond music and I started poking around the Seattle Symphony home page.  I had not looked at the schedule in a meaningful way for a long time. Maybe I could sit and be absorbed by music for more than 20 minutes. Maybe there was room in my being again.   We received tickets for a Pops performance at the Symphony.   I ended up going with my invisible friend Juliette Pinette. (I don't call her imaginary because you are the only one that can't see her.)  It took about 12 seconds into a Sousa March for the levee break. 

 Oh yes, music is back.  I bought two tickets before I left, went with ME last night to see Brahms' Second and have nailed down a subscription for the upcoming year.  

Something is currently compelling about complete absorption into something so complicated and amazing. Something not of this world.  It is a sort of drug.  If I could be there every day sitting in the darkened quiet listening to the amazing sound from horns answering the violins and the triangle.  The simple triangle.   That simple moment of clear sound. 

I guess the Music is back.  Anyone want to join me for a bit of Beethoven or Stravinsky. No fur necessary. 

The Road To Transplant

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

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

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

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

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

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

GIVE ME MY TRANSPLANT NOW

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

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

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



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

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

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. 

You Do Too Much....

How often do you hear this or say this to someone? 

I have a lot to do and always find more to do.
I say it when I feel I have not done enough and see there is more to do. 

Trust me there is so much to get done and I often fail miserably in some things and excell in others.  Laundry no.  Keeping in touch with a scared confused young adult in Turkey at day 9 of her double cord blood transplant, I am jonny on the spot....

You can never tell what is really going on inside the mind of a cancer mom.  We are special kind of creature that is busy trying to remember what life was before cancer came and trying to get through each blip and disaster that comes our way.  We feel bad that our child has cancer and when you ask about it we try to make it okay for you.  We try to hit the good points and not dwell on the dreary reality.  Some would call it denial.  But know we know the reality and will deal with it later.

Part of how we deal is doing something we can do.  Read, needlepoint, quilt, write endless e-feedbacks and try to make things better. Write long endless blogs.  Garden.  Fail to garden.  Cook, shop, walk the dogs, go to events, organize events, spend time on Facebook, Internet research on better cancer treatments, clean house, organize pictures, scrap book, fill boxes with stuff that should be put in scrap books, finish projects, start projects, walk the dog, go out to eat, order in, shop, text, answer the phone, refuse to answer the phone, write letters, forget to mail the letters, take long showers, forget to take a shower, start a bunch of books and never finish them, fold a thousand and one cranes, forget how to fold cranes, worry that you did something to cause cancer, wonder how everyone else's children are doing, worried that they won't make it, wonder if life ever will return to normal, try and figure out if there will ever be a job that will take you given you don't know from day to day whether or not you are available.  

So  

It is a weird life.  We do what we do to keep from going crazy.  Thank-you for your love and concern and support. 

We all do too much, lets hope it is too  much of all the right things.....

We're Back in the Hospital Again, We're Back in the Hospital Again....

Should be sung to an old country western tune.

But I had such a great time in LA with my family and with the weather and with the rental car.  It was grand.  Dinosaurs, Saber Tooth Cats, (no tigers, they are different), Van Gough, Nixon, Melrose, Compton, Norma's Restaurant, Kindle Donuts, Nigerian Delegation, Quiet Spoken United Pilot that did not understand how we could let the Japanese have the first 787 and not an American Airline, Sabine and Stephan from Munich.  It was wonderful.

Wonderful ends and reality begins.

Above the cute toes, a swollen leg.  Clots in legs cause swelling.

She was complaining when I came home.  I looked, I assessed, we went to dinner.  Then we called Dr. Fassett and then we went to the hospital and then she had an ultrasound and then she was admitted and then.....blood drawn, lovanox (yet two more shots a day).

Lots of blood draws, blood clotting  before it can be tested....

Cancer is creative.  I have to adjust my thinking.  I have a six month old baby.  As baby's grow, they are unpredictable.  They grow and change and just as you have it all figured out, they change again.  I am 6 months through this process.  I should not be surprised when there are new developments.

Okay, I can't fix this situation.  So I shall concentrate my efforts on identifying the warbler I saw by Nixon's birthplace.

We Missed Elli Mae's 5th Month Birthday.

I don't quite get the "new birthday" thing.   Some parents  have cake and ice cream and celebrate every year. We are not that family.  There will be a celebration of sorts on January 24, 2013 but that is more of a

"Get out of Jail" sort of thing but then there are still some parol issues. I wonder when we will really be done.  

Six months brings a bit more freedom but there are still lots of "NO's"  This last admission for GVH sort of took my by surprise and deflated my "We are Rock Stars" attitude.

I am trying to be brave and optomistic and have planned a couple of short get-aways for myself but am also preparing myself for the need to cancell them.  I just hate the Uncertainy and may have to go to the Space Supply Store and buy some Certainty.

Fred told me before this process began that they would give Mary-Elizabeth her a chance to have her life back but we would not be returning to the same life. I told him we really wanted the long term insurance policy.

Every time we do something I realize how much has happened to her. Her body is so beat up.  Time will heal the scars, the holes, the marks.  She will become stronger and more active.  She will do more than wait for her friends to call and will call them.  She will get back into some sort of school before she returns to finish at Gonzaga.  It just takes time. 

It has been 5 months since transplant, 10 months since relapse, 7 months to go to year one. 

We can do this.  Now we need to get ready for the "real" birthday party.  4th of July the dogs go on the grill....

Okay Her Graft is fine.... the side affects are a good thing, sort of.

So she is home.  The pain is subsiding. She is trying to catch up on her sleep.

I went to visit my UPS cousin and he was afraid that the Graft was failing.  Oh, my I had never thought about the graft failing.  Please know Ellie Mae is alive and well and doing her job.

She is doing such a good job that she is attacking Mary-Elizabeth's body.  The new cells don't like the body.  Doctor Paul(who eats Kangaroo) has not quite figured out how to make the girls get along.  So, instead of just getting on with life, Mary-Elizabeth has to be on steroids (times three) to teach them to get along. The steroids do double duty.  They help the body cope with the constant attach, decrease the new cells reaction and help the cereal people sell lots of cereal.

So more time with the nasty short term side-affects.  I of course worry about the long term ones as well.  The bone loss, the joint deterioration, the........  Don't ever read the label or any of the literature.

So we will go through this process again.  Lots of appointments, lots of late nights, lots of anxiety when she starts to taper. 

This last week was sort of a nightmare for me. While I did not stay in the hospital, it is clear that the hospital stayed in me.  I walk in that door and I am back, back in time to those months of the transplant.  It was like I had never been gone.  I knew everyone, re-connected to all the same folks that had worked so hard to get us back.  It drained the life out of me. 

I guess in the past few months the "transplant time" has been slowly put away.  Put somewhere in my brain where is was not a bother. Somewhere safe from my everyday thoughts.  We were returning to a less hectic life.  One more full of hope and less filled with worry and concern.

Okay, job for this week:  Make it through the appointments.  Repack the next trip to the hospital, just in case.  Repack the brain in such a way that when it all comes out again, it does not drain the life away from me so quickly.

I am not giving up on the food issue.  So beware.... Chef Walter, guess which picture has mashed potatoes that are fit to eat.........

Less than 36 hours and it seems like forever.

and it is not that bad.  So she is sleeping.  I am thinking about all the bad things I am going to say about the white bread toasted American Cheese Sandwich she received last night.  I love seeing everyone. Talking to everyone. Trying not to think about what is going to happen.  


There are going to be lots and lots of tests and scans and cultures and scoping but it will only affirm what we all know.  She has to go back on to the Anti GVHD stuff again and most likely longer.  It just really really sucks.


I am having a hard time getting on top of it.  I did make sure the plants were watered. The birds fed. The milk box emptied.  The dishwasher started.  The dead food out of the fridge. The sorts of things that keep the day running.  (I did have to call my neighbor to make sure the dead food made it to yard waste.)  


While I am an expert at handling and managing and maneuvering and manipulating this place.  It takes so much out of me.  I feel the same way I did the day we left after 2.5 months.  How is that possible. 


I have to mix it up.  I am going to only say nice things about Chef Walter. 


All the containers the food is served in are compostable.


We hope the salad was washed.

The not quite toasted American Cheese was a pretty  color.  White bread has no nutrition and I am so sure that is what should be fed to children with cancer. 


See I can be nice. 

I am finally going to start using my Datebook.

I have in my possession a lovely Purgatory Press almost one of a kind datebook.  I tracked it down after hearing a great story on NPR really early before all this transplant stuff started.  It arrived within days of the New Year and I have loyally carried around with me.  It has been in a variety of bags and purses and paper Starbuck's bags.  I has been with me during this time. 

I have made a few entries and put a few things in it. I counted out the 100 days.  I have not really used it.  We have been tied to the "SCCA Patient Itinerary"  and the book deserves to have fineink from fine fountain pens scribble on the pages. I am still a pencil stort of gal.  I have not been ready to begin to plan  very far ahead. Like Maggie Smith said in The Best Exotic Marigold Hotel,  "I don't plan that far ahead, I don't even buy green bananas."

I am going to experiment with buying green bananas.  I even allowed myself to put a concert in my date book.   On June 16, 2012, I am going to go to see John Folgerty.   There, See I can buy green bananas and wait three weeks for a concert. 

We measure progress a bit at a time, a day at a time.  A blood draw at a time, a taper at a time, a morning at a time, a blood sugar at a time. 

The String seems to Stretch and then...

I am not admitting any of the following:

Trip to See Gauguin exhibit at the SAM.  Fast trip in before lots of people showed up.

I am not admitting to a trip to BelSquare for some sliders and beet salad and a bit of shopping.

I am not admitting those things because maybe we were both feeling really randy and wanted to pretend that there was not a transplant just waiting to act up.  It was going so well and then.....

Mom you didn't tell me about the bruise on my back. 

What bruise?

Sally, keep calm.  It is just a little blood under the skin that looks horrible.  Don't panic.

Oh, dear, it is big and ugly and black and purple and right around the place she has to have one more lumbar puncture...   Damn.

Call to SCCA.  Talk with Monica.  Go in for blood draw.

Platelets are down to 60.  Down from 70 on Monday.    Damn.

Now what? 

Medication?
Problems with ElliMae
CMV ( virus that we all carry that does something)

Oh,  on top of all the " it is probably nothings there is this deep dark bit of fear. 

Why can't it be over?  I want this to be done.  I want to be able to breath long enough to finish my income taxes and get my dog groomed and start finding a job.  I want to get far enough from this transplant thing to forget about it.

I will come around and it will be fine and I will put my worry away.   

Oh, in case you did not know the stores are filled with white linen jackets for men.  Did I enter a time warp?  Is Don Johnson back?  At least they are not polyester.

Painting done by the father of Baik. I keep thinking about Venice.  Maybe because it is a city with a long history and great ability to survive.