Monday, July 28, 2014

So here we are.... gliding along, not knowing others are really struggling...

That is a lie.  I know there are horrible battles going on every day, all day and every night. I know kids are dying and mom's are crying and people are getting horrible horrible bad, worse than you can imagine news.

As we head out of this current orbit around the Double Cord Blood Transplant  universe and head to the unknown galaxy of Post DCBT, I try to be a bit like Lot and not looking back at   Sodom and Gomorrah.  I don't want to know what is going on behind me but I know I am turning into a pillar of salt.  I have not found it possible to just walk away.  Or in my case, run like hell. 

It is so hard.  Sitting here tonight, working on my blog, trying to do some editing, figuring out what I need to do to publish and then I hear a ping.  A bell like sound that says I have a private message on Facebook.  I check and it says:  

I thought you would want to know my dear son passed away yesterday. 

I see those words and it is like a kick in the gut.  This is a kid that had 10 months of chemo and a major surgery and was clear and then, it was back just a few months ago and now it is over for him.  20 years old. I can just feel the balloon of hope and prayers collapsing around a devastated family and friends and his best friend that did a campaign for him to go to Europe.  (The hope was to take  both families but from what I can gather, it was just the two boys.   I am sure they had a great time. ) 

So I stop.  I reconnoiter, I check on my kid.  I gather the Momcologist around this devastated mom.  I relieve her of the responsibility of "telling" another human. I start to look for the obituary because I will go to the funeral/service.   I do a quick search and find the child's Facebook and Twitter account.  I heave a heavy sigh. I write a few words and do what I think helps and then I turn away and head back on our road to recovery.  

But I know it is like the Ray Bradbury story about the guy that steps off the designated trail when he goes back in time to hunt dinosaurs.  When he returns the world has changed.  I have stepped on another butterfly and the world will not be the same.  A bit of hope chips away.  

Every time one of these children die, they take a part of the universe with them.  How much they take depends on where they were in the child's life. The moms have a Grand Canyon, Winslow Crater, Pacific Ocean kind of hole in their lives.  The loss is never minor or insignificant.  It is gaping, hard to close and subject to multiple infections and complications. 

So we say goodbye to another child.  A family is decimated, the world looses amazing potential.   His last tweet:

If you do everything right, people won't know you did anything at all.

Sunday, July 27, 2014

Gathering and Letting Go

 We are
essentially Hunter/Gathers.  We don't necessarily use those skills for the same reasons anymore.  It has been a long time since I went out and captured something for dinner.  However, I am on the hunt for cool and wonderful and life saving items and concepts and words and interesting things all the time. 

I love to watch and look and listen and discover.  It is something deeply embedded into my very being. 

One thing I gather are people.  People with interesting and varied lives. I love their stories and histories. I love digging deeply until I find the connection. The thing that makes us the same yet not the same.  For example, last night I had dinner with one friend and found out the server was the aunt of one of Mary-Elizabeth's friends.  I am sure we were at the same Graduation Party.   The threads that connect up are long and mixed up but they are real and are strong. 

We gather people all our lives.  The roll they play varies over the years but if we are lucky there is a continuity of great depth.  They know our stories and we don't have to explain too much. 

I also have hit a point in my life that I am loosing those very friends.  I learned of the deaths of two such people just yesterday.  Both were gone way before was necessary.  Both were in my life at various times and in various ways.  Those ways change but they were still there.  We still had a connection.  

This shedding of friends and family is much more painful then gathering.  I often wondered why Meb was so uncertain about making friends with her Cancer World buddies.  It is way too hard to loose people after 30 years of friendship let alone a couple of years. 

Here is to Alison Beck and Phil Caplan.  Both leaving in their 6th decade.  Way way too soon. 

Friday, July 25, 2014

The cure is such a problem...

She is baking cookies for Camp Sparkle. A summer camp for kids whose families have been effected by cancer.  The kids are going to the zoo today and it is the last day of camp for them.  It has been a quiet week at the Y in the central district, swimming every day, lots of art, lots of time in a gym.  It has been good. 

Today MEB is taking her last dose of Prenisone. Collective breath holding is happening.  She is for all intents and purposes done.  She is finished with this cancer stuff. She is "cured".  

Cured... a weird word. OED explination.

Middle English (as a noun): from Old French curer (verb), cure (noun), both from Latin curare 'take care of', from cura 'care'. The original noun senses were 'care, concern, responsibility', in particular spiritual care (hence sense 3 of the noun). In late Middle English the senses 'medical care' and 'successful medical treatment' arose, and hence 'remedy'.

So, she is cured.  She is doing so so well.  I cann't sing the praises of health enough.  Not everyone has such success.  So many have had little or no luck in the process. So many deaths, so many disappointments.  

Remember our friend Lulu? She fought to get out of the ICU.  That "cure" left her unable to walk or even have full use of her arems.  She was so weak after so much time in bed.  So she is back on her protocol.  First big round of chemo and things are just terrible for her. 

Here is the note her mom posted.

So Lulu Ysarua Martinez will not being going home today...she has not cleared enough chemo out of her so another night at the hospital....the pain is being managed so is the nausea....ortho came up and casted her legs for new braces to wear to walk....they will not be administering vincristeen chemo anymore and will be bringing a new chemo drug on board that is just as effective but it keeps your counts down longer ....has been complaining about side ache and trouble breathing her blood count also dropped so they will be giving her a blood transfusion shortly as well.....will due chest xray to make sure lungs are good.....will update later when I know more.....

She has a fever this morning. I can sense her mom's fear and terror.  Here she goes again.  This is such a hard battle. At some point you just wish there was a way to catch a break!!!!!

Saturday, July 19, 2014

So Now What?

So, Mary-E had a discussion with Pearl Anne today.  She explained to her that she was at large and in charge.  She was up for the job and had done a really great job doing her work as the new immune system.  She explained that things were okay and she had been taking care of things just fine.  No need to overreact to every little thing.

  A scarf was not to be feared.  No reason to get all rashy.  A bit of butter on toast was nothing to worry about.  Sushi is really a good thing to be embraced.   No reason to get the gut upset.  There were going to be many battles to be fought in the next few months and years.  She was ready. She has had 2. 5 years to settle in and things are good. 

Now we wait.  Now we wait and see.  The last time the "last" dose was taken there was a party. There was a celebration. There was laughter and relief and joy.  I could barely get out of be this morning.  I have taken to watching "Keeping Up with the Kardashians".  
I have to get a grip.  I have to remember she is 30 months post transplant.  She has gone 30 months without a relapse.  We are half way to the five year mark. The point where most cancers are considered "cured". I should be relieved she has had no signs of any cancer.  

I don't know how to be relieved and happy about this.  Trust that is gone for good was so shattered with the last relapse. 57 months..... 7 years of remission.  I don't know when I will ever believe it is gone for good. 

As always, I will work through this.  It will be okay. I will be okay. She will be okay.  I just have to adjust my expectations and know that Okay is Okay.  I feel like we have been through a fire storm and and hurricane and then the tornado touched down to clear away the rest.  Just not sure how to recover from this.  Pretty daunting.  

I will sit with this for awhile and count my blessings and watch a few more episodes of bad TV.

Wednesday, July 16, 2014

Currant Lessons....

5 or 6 pound of these:

juiced makes about 5 cups liquid.

Then you add equal part of sugar.  

Boil for about 20 minutes and you get 

Each of these jars hold about a cup. 

So the process produced about 6 cups of jelly.  

The French are very into Currant Jelly and have a special preserve.  

As of 2012 the House of Dutriez in the town of Bar-le-Duc provides one of the very few hand-made preparations still on the market, la confiture de Groseilles de Bar le Duc (Currant Preserve). The traditionally hand-made product involves épépineurs or épépineuses (seed extractors) de-seeding the currants with goose quills to flick out the tiny seeds without disturbing the flesh of the small fruit. Sometimes sweetened jellies, consisting of mashed and sieved currants of a significantly lower cost and quality, appear on the market under the same name.

Mine was made by steaming the currants, letting the juice gather in the reservoir.  Sugar added and boiling in a French Jelly Pan stirred with Ms. Ferguson's Mother's Jam spoon. 
 Not a single goose quill was used to de-seed the berries.  I clearly disturbed the skins.  My berries were mashed and abused and oh my. 

Life is all about compromise. Nothing is perfect. Sometimes it has to be okay to have  a mashed and sieved life.

So Currently I am trying to learn from my Currants and simply carry on. 

Sunday, July 13, 2014

She is down to One Last Sirulimus

Next week at this time the "Girls" or more specifically, Pearl Anne will be flying solo. She will be in charge of keeping all that invades from MEB's body. 

Protocol:  Immunosupressants - 180 days post transplant.

Mary-Elizabeth 31 months or about 900 days. 

She is almost done with this step, 24 months, three different kinds of suppressants  she is almost done with them.  I am currently not totally freaked out about it.  

I think we are all so tried of this it is hard not to just be ready to be DONE

I am feeling like the time as come to end this blog after 10 years.   Maybe I am done and leaving this writing forum will help me be DONE.  I won't quit writing, I will just do so in another place, another title, another forum.  

Maybe it is time to move on in the way one can  It is a tentative moving on, not really but sort of.  Hanging out in a different place in Cancer World.   As we all know, we don't ever get to really leave.  Now it is about managing the long term side effects. Kidneys, lungs, brain, menopause, thyroid, cataracts.  (These are not just stuff that might show up, these are guaranteed to be a concern. )  

So this morning, I will just drink my coffee.  Water a bit. Watch some plants grow.  Read my book a bit.  I will enjoy this moment, this instant. This bit of Seattle Sunshine.


Thursday, July 10, 2014

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.