Monday, August 25, 2014

Stage Ten

Lots of cancer's are "staged".  It depends on the kind and lots of factors.  Stage Four is bad. Stage One is not so bad.  People move back and forth in the stages and it rules their lives.  

Leukemia is sort of like being pregnant.  You are or you are not...  Simple.  

Mary-Elizabeth does not have leukemia any more.  She has not had it in her system since some time in November of 2011.  She has been in "remission"  or not pregnant since then.  In order to have her transplant, she had to be cancer free.  The whole cancer free thing seems to be confusing because of the length of the "treatment".  It does not fight leukemia, it just beats up the bone marrow to such an extent that in theory, no respectful leukemia would dare to come back.

The various kinds of stem cell transplants, bone marrow, cord blood,  related, non-related, self-donated, all of those are just jargon.  You sign papers, let them kill the cells in your bone marrow that produce blood cells and replace them with healthy, happy, normal cells.  Or that is the plan. 

So, since we live in Leukemia World and we don't get to have stages, (not that we really want them), I have decided we are in Stage Ten. I figure we have been here long enough to just make up stuff. 

Stage One: She was diagnosed on Friday the 13th of August 2004. 

Stage Two:  She was Leukemia free or in Remission on September 13, 2004.

Stage Three:  December 7, 2016, she took her last dose of Chemo therapy. 

Stage Four:  Relapse on September 28th 2011. 

Stage Five:  Remission November 10th, 2011.

Stage Six: Double Cord Blood Transplant, 2012.

Stage Seven: First new baby countable cells show up in her blood, February 11, 2012

Stage Eight:  August 1, 2014, the final doses of immunosupressents  are taken.  (Should have only had to take them for 100 days, but who is counting....)

Stage Nine:  De-Portation Day.  The port that lives under her skin with a nice tube going directly into her heart, is removed.  August 25, 2014... 

Stage Ten:  Trying to begin to believe and trust it is over.  

This is a journey at its end.  We have traveled across the country to find a path to the sea and have returned to tell our tale.  Like Lewis and Clark we are worn and battered and very ready to sleep in our own safe homes.  

Stage Ten begins today. 

Saturday, August 23, 2014

Cancer Mom Counting...

We count the numbers of doses of Chemo Therapy. We count the number of times they have invaded our children's spines with Chemo. We count the number of days between doses. We ask them to recount when blood counts are high and when they are low. We count how many days before the end. We count how far from the end we are.  We count.

We count to control and put some sense to our world and to feel like we have some control.  We like "to know" what is happening, or might be happening or what might not be happening.  

Our world does not make sense to there has to be some sort of mechanism to help.  

Treatment is easy.  It is set out, it has a plan. It has steps and goals and procedures. It has something called a Road Map.  Not quite AAA but darn close.  It lets you know where you are going and how you are going to get there.  Then some are luck to have an Advanced Nurse practitioner that gives you great calendars and a key to the Road Map.  Yes, there are bumps and count failures and lots of complications but it is a plan.  It has a defined end. 


101, 121, 314, 151, 617, 181, 920, 212, ___, ___
 What's next?

Being off treatment is a different story.  I am sitting here, counting down the days before Mary-Elizabeth goes back to college and I don't know what to think or how to react.  

Now what?  Do we count the transplant for the magic 60 month count down?  Do we just hold our breath and count until the next long term side effect appears?  We know the leukemia she had is gone.  Will there be something else to show up?  When will it come? Will we recognize it in time? Will we ever feel safe again? Shall I count my questions?

Maybe I will count the days until the worry does not greet me first thing in the morning.  Lots will tell me not to worry, she looks great and it has been a long time and she will go forth and thrive.   What is missing for me is the trust.  I trusted before and that got us 57 months off treatment and a relapse.

If you are sensing of a bit resentment and anger, very good.  Yes, my child has survived her Double Cord Blood Transplant.  But there is a price for survival.  No one comes out unscathed.  

Okay, get back from the deep despair and anger Sally Ann, You have to clean out your car and pack your child for college.  You have to see there through surgery on Monday.  You can do it. You have done it so far and you can make this last lap. 

Thursday, August 21, 2014

Counting Down...

Inject Warts with de=activated yeast... Check

To be done:

Pack the Car.
(Maybe I should clean out the car.)
Trip to Good Will to drop off stuff identified as donation worthy. 
Do some fun things with friends.

Port Removal.... 
Pick up small amount of drugs still required.
Teeth Cleaning.
Waxing Appointment.
Dog Spa Day.

See friends.
Eat Asian Food
Especially Sushi and Thai

Stop Lovonox. ( No more rat poison or shots!!!!)

Head back to College for Junior Year....

The first year that will seem more normal.  Much more normal. 

Hard to believe we have it all figured out. 


Saturday, August 16, 2014

Meeting Momcologist

Today I met up with some Momcologist.  Often this is a moment of healing and joy and support. Today it was a moment of support. We gathered to support one of our own at her son's celebration.  It was a great bitter sweet event.  Laughter, tears, moments of deep sadness, some relief in coming together.  

Clearly a very extra ordinary person had his life hijacked from him. 

We often mention that a person lost their "fight" with cancer.  That is was a brave battle. They were a trooper, they soldiered on.  There was a positive attitude and braveness is always mentioned. We heard a lot of that today.  Everyone fought, everyone prayed, everyone pleaded, everyone did all they could to keep death away.  

I just don't ever want to hear that Daniel, or Micheal, or Alise or Ruby or Nala or Owen or Mario or Sarah or the endless others "lost". They are not losers. They did nothing wrong. They did not take a wrong step or fail to do something right or not do ever thing possible to conquer cancer.  It is not fair to say a child has lost a battle.  Winning and losing would be appropriate if there were rules of the fight.  Like the good old day when everyone agreed on what day the battle would take place. The child's life was hijacked. In many cases there was really nothing to be done at the end. 

They had cancer.  It is unpredictable. It is ruthless.  It does it's job in ways no one can figure out.  It is a very poorly designed invader/alien force. It has not figured out how to reach stasis.  It kills it's host.  It isn't just happy to settle into a bone, or a lymph node, or a kidney, along a nerve or an eye.  It wants more. It wants to see how it can continue to survive in other places.  Lungs, brains, other bones. 

Today I felt like we were all a strand in a web. The middle was Daniel and the stands and circles of web were populated with all the friends, families, care givers, teachers, neighbors, classmates, doctors, ministers.  Everyone in the web, there to say goodbye to the center of that particular web. 

The webs are fragile and each day have to be re-made.  When the center is gone and the strands are broken, a new creation has to be woven. Clearly he left much more of himself behind to help with that process.  

Daniel is gone. His life was ended by his cancer.  He is so much more than the kid that "lost" his battle with cancer. 

Friday, August 15, 2014

Gentle Landing

Almost didn't feel the landing.  We have arrived.  We are here.  It was a quiet re-entry, a soft gentle thump. No broken bones, no real jarring crash.  A simple.... quiet... sigh.

So now what?  Like all endings there are things still to be done.  Loose ends.  Eye stuff, teeth stuff, Port Removal. Medication ending. Some being changed and added to facilitate the end. Some sticking around until January and some never end but the list is much much shorter. 

Deep sigh. Quiet contemplation about what it means. 

 Maggie wondered if we were having a party.  An end of treatment party.  Does not seem the thing to do.  Does not seem like I am ready to celebrate.  I wonder if celebration at the end of the last  journey was a form of hubris.  Are we really really done? Is it done?  How do we know? When do we know?  Will we ever know for sure?

I know when I read about people ending treatment and rejoicing, a little part of my heart hurts for them.  A bit of fear resides somewhere, that little voice, that nagging smidge of knowing.. knowing they might not really be done.  

They might have the call from the tired child with the bruises and the headaches and it might start again.... 

I am so grateful and so relieved and so....  

So if I rejoice, is there another parent out there, sending me a heartfelt warning.  If they have a story of another journey?  

Going to do some breathing. Some quilt finishing. Some reading. Some taking in the moment, quietly. 

Thursday, August 14, 2014


Today we are hoping to leave the Cancer World tunnel.   Big appoontment at SCCA.   

Tuesday, August 12, 2014

She is on the Train back home

so she has had some Grandma Mary time.  Always good. She loves the little old ladies. She loves to listen and comment and just fit in.  It does not take very long for them to realize she is one of them. She has packed 80 plus  years into her short 22.  

We have some very important days ahead of us.  Serious and important.  On Thursday we have the last appointment with the SCCA until January's big annual appointment.  I have lots of hopes that lots of meds are going away.  She has successfully tapered off the side-effect causing drugs and it should make the rest go away.... she could be down to some vitamins a bit of thyroid medicine and over the counter allergy stuff.  Oh, to hope for such a list of meds.

It is hard to hope or trust.  Tomorrow marks our 10 year anniversary.  10 years ago tomorrow this ceaseless, never ending journey began.  But we are only marking the beginning.... we begin on the 14th of August 2014 to mark a new beginning. The end of Double Cord Blood Transplant complications.  2.6 years of constant diligence, concern, anxiety.

It is replaced with new worries but new is always a way to start a school year.  New binders, new roommates, new classes, new teachers.  New. 

We are all about New Starts, New Hope and New Adventures.

She gets off the train at 12:30...... Here we go. 

Sunday, August 10, 2014


Lots of words for something we don’t embrace as a culture. I remember our friend Yim talking about how in Thailand they begin to teach meditation to kindergarten children and the first block of time was 15 minutes.
15 minutes… I wonder if I can do that. If I can sit for 15 minutes and not think.  If I can just be quiet. 
There is so much going on in my mind. Quiet does not seem to be much of a possibility.  I am going to try.  A moment. A moment of quiet. A moment with the dogs not barking, the phone not ringing, a moment with only silence.
I think things are at a place such a thing is possible.

I will let you know how it goes….


Thursday, August 07, 2014

They Never Ever Tell You Everything.....

You just get used to bad news. 
You are ready for bad news, you have endlessly received bad news, you make lemonade and mustard gas out of the bad news but it is always, always bad. 

It is just bad.  No other way to put it. 

Counts up- Bad.
Counts down-bad
No counts- bad
Liver function up- bad
Liver function down—could be bad
Kidney numbers up  sometimes bad
Radiation = cataracts
Radiation = infertility
Radiation = dead thyroid
Radiation= brain process slow down
Radiation = dead bone marrow- Good.
It just goes on and on,

So imagine how it felt when our new very active, very hyper, very loud endocrinologist bounced up and down when she saw the
Stim test results.

Had she failed….. Life time of prednisone…… life time.

Happy happy happy day.

Wednesday, August 06, 2014

I think we see the end of the Tunnel

I can see. 
I can hear it,
 I can taste it, 
I can feel it. 
The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 
The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology
2.    Big appointments with SCCA
3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and
Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready