The Downside of Too Much Information in Cancer World

As everyone can agree.  I am on the computer and writing way too much.  I embraced this blog as a way to put the information about ME out there in 2004.  It all started before diagnosis.  I became very aware that she could listen to me talking on the phone.  I could not stand to tell the story time and time again.   

Remember when we talked on the phone?  

Well in the past ten years many bloggers have joined me.  Lots of parents and patients added their stories to the web.  Then came Caring Bridge.  A blog site dedicated to patients and their families.  Then Facebook exploded and support groups showed up.  

In my case the group is Momcology.  Secret handshake, passwords, have to prove you are one of us, initiation and vocabulary test before you can join.  You know the sort of site.  (Never pass up a chance to support this effort.)

With every good thing, there is a downside.  This explosion of sites and access and ways to interact has intensified the knowledge of how bad Childhood Cancer really is a lot of the time.  We know on some level it the worst of all worlds but HIIPA has made it harder to find out what happened to someone you spent weeks with in the hospital.  If you were in such a state you failed to get a good contact number, people just disappear.  It leaves you in a place where you let yourself believe they survived. 

It is no longer possible to be that naive.  More and more the relapses, life ending infections and complications, the impending deaths of precious lives is part of every day. Parents  put their desperate pleas to the universe in a post along with a small picture of their most valued and irreplaceable child. 

Another pin prick, more blood drips, more sadness pools at  our feet.  I am not suggesting they should not share.  I know the need to say the words and let the power of those fears dissipate if only for a bit.  A chance to reach out and find others in the same dense fog. This is a dark, dank lonely and sad place.  Cancer World is a place of despair and frustration and fear. We are here and we are here together,  our group, our tribe, our fellow travelers. We understand what they are feeling.  We know the steps they take. We know that bottomless fear and despair of lack of solutions.  We know we are dumping poison and radiating our children to as close death as possible in hope of bringing them back.  Hoping they can get back to "NORMAL".  

Some parents are sad, some are angry, some curse God, some plan the destruction of the National Institute of Health. Some raise money by shaving off their hair, some walk, some run, some have auctions and events.  You absolutly have to do something. This kind of fear and despair has to vent out of the pressure cooker that is Childhood Cancer.  I took on Chef Walter at Seattle Children's Hospital for failing to have anything to feed my daughter during her long stay.  (Check out 
www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital)  

This week I have learned of three relapses and four deaths.  I have read the agony and cries of mothers who are living with the loss of their children as time keeps marching forgetting them. I have learned of families being sent home because there is nothing left to do.  I have discovered, with more frequency, the term "Comfort Chemo". 

So... Where does all this leave me.  I can't fix it. I couldn't even shame Seattle Children's into serving something more than unwashed iceberg lettuce, frozen toasted cheese sandwiches and hot dogs.  

(Photo Stolen from Liz Selleck)

But I guess I can take a lesson from our children.

Don't stop. 
Don't give up. 

 Even when they say there is nothing left to do but Comfort Chemo.  

Just Give Me the Answer!!!!!

"There are no Answers only Arguments"

Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983.  One of the OCD CPA's that decided adding a JD to his name would be easy.  He wanted answers, he wanted certainty.  He was in the wrong world.  

Law is about change, pushing the envelope, finding new inroads to old systems.  It is about the creative expanding the boundaries of the old set rules.  Many things we take for granted were taboo and forbidden many many years ago.  Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it. 

Medicine is very like law. Always learning, always changing, always developing.  Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood.  Yes, we have come a long way but we still don't have all the answers. 

Childhood Cancer is a huge amorphous amoeba.   Every single person I have ever encountered has a Diagnosis Story.

We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.

They did not find it until________ months later. 

Common story.  Horrible stories. Great fear that if they had found it earlier something could have been avoided.  We know that if you catch the cold early the pneumonia won't come.  Wish that was the case with childhood cancers.  

Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early.  It is sort of like being pregnant.  You are or you are not... 

There are so many times during this process that no answers are readily available.  Very few tests/scans/examinations or other woowoo magic give you the answer.  Most likely it is a process of elimination.  

Meb's sort of went like this.

Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor

Oh, leukemia.  (second blood draw 2 months later in anticipation of biopsy of mass.

For years, yes years, Mary-E has had her blood cultured.  Only once has there been a positive.  They were used to exclude fungus, bacteria, lots of nasty things.  Only after something grows do they investigate further.  It is a long process and there are no answers, no easy answers. It is not TV medicine.  

We all want the easy answer.  Actually we would take any answer.  Even if it is a bad answer because the not knowing the answer is crazy making.  Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there.  The mom's waiting, wondering and hoping for a good outcome but we know. We know better.  We know it is bad.  
But then we think "It could be worse".  I remember sitting and waiting to see the brain surgeon at Seattle Children's.  We sat near the Hem/Onc desk and I watched the small bald headed children  being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors.  Boy was I wrong...  

But we did finally get an answer.  We knew what the problem was and had a plan.  A way forward. It was a good thing.  

Knowing is always better than no knowing.  After you know you feel like you have SOME control over what is going to happen. It is a good thing.  Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.  

Sometimes knowing has to be enough. 

Shifting Focus

Sometimes it is hard to make the shift.  Sometimes we have so much on one plain we don't see the other side or have another view of the world. 

I was reminded of this when I saw this picture.  I clearly stole it from an amazing photographer.  

 Are we coming or going?  Beginning or end? Start or finish? I guess it is the old "To Be or Not to Be? That is the question.

I think I am so beyond the worry and concern.  I think I can help other's who are starting the voyage but it takes just a moment, a note, a post, a call, an old picture, a question, a piece of paper to have it all come back in a rush.  Classic PTSD. I wonder when it does go away?

Meb drove herself to the eye doctor today.  She went to see Dr. Balter.  The same eye doctor who found the swollen optic nerves 10 years ago.  10 years of our lives have passed since that fate filled day.  120 months 3650 days.  One thing I can say is I sort of really know what has happened during these last 87,600 hours.  Oh do I know what has happened.  

Okay, so I have decided we are taking off.  We are not landing, we are not sitting around on any old daisy and just waiting for life to speed by too fast.  (Speeding is only for Iowa highways)

Dark Side of the Moon..

Sun again. A bit of sun.  We are finally at the end of Eastern Journey.  We swing around the back side of the falls and head back West.

Frankly I was a  bit disappointed at the falls last night.  We of Western blood are not used to seeing falls quite like this.  From here we are on the top looking down.  I was raised with  Bridle falls, Yellowstone falls,

Snoqualmie falls.  They come to us from mountains high above.   This is something where the water just falls, over a cliff and we are level with them .  the mist was also in the way and the huge Midwest thunderstorm.

The sun woke me about 6 am and I was pleased to see that the mist settled down, and I began to watch the water, the never ending water fall, plunge, leap, did I mention fall, down the horse shoe cliff.  The river is Mississippi wide and smooth and the rapids are short and tentative.  I can imagine it must have been a surprise to see it from river level the first time.  As I look at the people walking by this morning, the size is confirmed.  I will be wearing my new Cowboy rain coat.  I will be seeing it up close.  I will be a grand adventure to our trip.  Our swing around will be eventful as we head back to our home, crossing the country licity split.

This time it is about seeing people we love and care about.  Part of our people that have been with us for so long. Deeply held and valued friends.

I Can't seem to walk into the fire anymore....

I just don't have it in me anymore.  I don't have the strength or the will to really be of help to people in legal battles.  I thought I might be able to do a little.  I was wrong.  I was so so wrong.  

Making a phone call on behalf of someone is hard.  I don't think I can handle the disappointment. The expectations that things should be fair. I have lost my touch.  

I always was a tenuous lawyer at best.  I never was a Lawyer.  You know one of those people that always wears a tie and suit and never leave the office.  They are there because they are Lawyers.   I think it is sort of like the military.  They want you young.  Mold-able. Some insecure in their selves so they cloak their insecurity with Lawyer Ness....  

Now maybe it is not fair. I do pull out the lawyer sometimes.  It is always a judgement call. Always a wonder if it is a good idea.  We lawyers don't have the best reputation and we know how to make people miserable.  Maybe that is what is missing from me.  I just don't have it in me any more. 

My entire being has changed. I move in a different reality.  You see me, you talk to me, you do things with me but I am really not attached to the world in the same way. 

I spent the morning with a Mom in the Chicago area with a child headed to transplant.  They might be denied because of a myriad of reasons.  Oops, no life saving procedure for you.  Go back start again.  Sorry. 

I so dreaded transplant.  I have seen Elise R. go through it and knew of its horrors.  It was so bad.  I never saw anyone have a "easy" time. I was horrified when they told us she was headed to transplant. I tried to talk them out of it.  I didn't want the double lumen. I didn't want to have to find a donor. I didn't want.... and then.

I couldn't wait.  Once I knew it was coming, I was ready. Let's do this. Lets get going. What do you mean it takes months? What is the hold up?  What do you mean she might not be in remission? .007 looks pretty good to me. Why do we have to do all those tests AGAIN  We just did them!  Oh, you mean if things aren't perfect we might not go to transplant?  Oh, I want my transplant and I want it now....

The old, wanting what you can't have.

Would I have let her sign the papers if I had known what I know now?  I would because she has finally turned the corner.  If she was one of the many that have died?  I don't know.  I really don't know.  

We all make the best decisions we can at the moment it has to be made. Then we have to walk the path chosen.  

Conversation goes this way:

I don't know how to best make a decision?

But it has to be made.

What ever decision is made, is the right one. 

Our Small Circle of Moms.

We all know that Meb has a dead part of her bone.  She is thankfully not in pain and her steroids are going down but it is a problem.  It is not a huge, pull it out and replace it problem but it is of "Grave Concern".  So how do we address it you ask. 


Some swimming, some gentle walking, some yoga, some high calcium rebuilding chews, do-able stuff.  So yesterday we went to Seattle Children's before even the Valet guys were awake, (7:30 am).  We settled into the Physical Therapy waiting room and it was very quiet.  One poor child with over active nerves in her ankle beginning and intensive 2 week rehab program, and a Chappy kid. 
Dr. Chappy Conrad, is a gaulky awkward guy that takes out bones and rebuilds them in kids with bone cancer.  You can tell the kids, bald, braces on their legs and usually a spot that just won't heal on a long incision.  We were all chatting and in came a child, 6ish, with a pregnant mom. 

Child sounded like a TB patient with snot going everywhere when he coughed and sneezed.  We did not stay but were luckily leaving.  I suggested to William's mom they get into a safer place and the snotty child's mom was not happy.  "He has asthma, he is not sick!"  I left.  I did not have a chance to let her explain how stupid I was to doubt her judgment.  Now, I would have loved to talk to her about donating her cord blood as she was obviously pregnant but had to let it go.  We were off to another clinic, not at the hospital.

Here is my general apology.  I am so sorry I hurt your feelings.  I would do it again. I won't expose her to anything if I can help it.  I certainly am not going to sit in a small confined space with a leaking child. 

We all have to do what ever it takes to keep our kids safe.  Cancer Moms are a crazy bunch when it comes to such things.  We live every day with huge amounts of fear and trepidation.  The smallest thing can push us over the edge.  And once we are over that edge, we don't recover very well.  We have no reserves. 

So if you encounter us and we shun you with disgust, please don't take it personally.  Now I have to find my dinning room table.   

Sometimes things just don't work but the taper seeming to be.

It started a week ago when we tried to go to brunch at Palisades....  Last time were were there the waiter, once apprised of MEB's dietary restrictions was great.  He brought her things hot and cold from the kitchen, never flinched when she asked.  She can't eat from a buffet. 

 Now you might ask why we would go to Palisades if we knew they had a buffet for brunch.. She has so many other restrictions now we knew there would be something she could eat.  They have a huge variety of stuff that is legal. 

Well we sat down, ordered our much needed coffee and talked to the waitress.  Oh she did not want to play. She made it very clear we were a bother.  We left.  I did stop by the front and asked to speak with the manager.  He apologized and pleaded for another chance but we headed out the door with a promise of better and free things the next time.

We then went to Palominos. It was a bit better.  I won't even mention the ice cold Calamari.

We went over to Boom Noodle for some of their yummy food.  Well of course the menu is changed.  Of course the good Vietnamese noodles and rice dishes are gone.  Of course the lemon broth chicken noodles have disappeared and been replaced by sort of bad Asian food.   We are clearly on a roll. 

We have been sticking pretty close to home but tried to have some BBQ tonight.  So off to RoRo's.  Best stuff in town.  Walked in for ribs, both had been "86"ed.  I don't remember what that means exactly but I knew what it meant   Left there and headed to Hale's Ales. Land of   Panzanella salad.  Love that salad.  The child was mourning the loss of ribs so was pretty snarky.  (This is not the first time we have gone to a BBQ place and found them ribless in Seattle.)  

So something was found among the choices and to top off the evening she ordered a brownie. They have great brownies.  Wonderful brownies..... unless you re-heat them in the pizza oven too long and the are burnt on the bottom. 

My dad was legendary for having the worst meal ever prepared in the restaurant.  He was always afraid to send things back because he knew the chef's would do to them.  Floors, stomping, spitting, was often involved.   We are hoping that with everything else going on, she is not channeling Dad. 

On a better note, the new very slow, very long very complicated taper is going just fine.  

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. 

Balance

There is always someone trying to walk on a wire across some big open space.  Grand Canyon, the quad at U of W ( I go there you know), or just between a building or two.

We ooh and awww and we are amazed all holding our breath lest they plummet to their death.  We are so impressed with their strength and determination and their ability to concentrate so so much that they don't fall.  They have to breathe so we hold our breath for them in support.

We Cancer World people live on that wire and we hold our breath all the time.  We try so so hard to make it across to the other side. 

"Your child has cancer.  Here is the plan.  You have two years and 14 days to suffer."  They mention secondary cancers and other such stuff but you focus on "getting to the other side."  We mostly get to the other side.

Remember the movie Holes, well after you live on the wire for a what seems like a million years, you find the "other side"  is not inviting.

There are Holes, and dangerous animals and scary twists and turns.  There is no way to prepare for anything but as Paul Schliep put it.... Surprises.

Pick an organ, any organ. Cancer treatment can effect it... If not now, in the future.  It took 5 years for Mary-Elizabeth's thyroid to die.  Her kidney's are not so forgiving this time.  Total Body Radiation, pages of meds, months of steroids and well...... 

Kidney's are sick.  They are tired of filtering and doing their job.  They are going to have hissy fits and not do their job very well.  They don't regenerate like their neighbor the liver.  My brain is not big enough to wrap around this issue. 

 I do know the answer is not a Kidney "transplant". OMG.  Everyone this is not television medicine.  Transplants are the last resort.  They are the worst thing that can happen to someone.  Needing a transplant is like having a tiny bottle of air and having to make it until next Tuesday for the Russian capsule to bring some more!   Now, not that I am not grateful for the fact they are even available but this is a terrible experience.  It is not Jump out of the twin towers or die in the flames bad, but it is close.  She had to jump and hope they built the net in time. 

I am hoping we make it across the abyss.

So, I am back in my Go With the Flow Mode.....

A week or so ago, I took a phone call from someone at the SCCA.  On the other end of the phone was a lovely, kind, smart, caring doctor asking me some questions.

To the normal happy go luck parent they would have been simple questions.  They would have been answered and then dismissed as nothing to worry about. We will do a couple of tests and see how it goes.

I am like the hyper alert crazy person when it comes to my daughter.  I have a 12th sense when a call comes and I analyze everything to the nth degree.  I hear what they say, imagine what they don't say and I go to the deepest, darkest place in the Universe.    It is my blood and in by very being. 

I have no choice.  I was born on the Salmon River, the famous River of No Return.  My  river looks like this.  Not a nice straight or normal river.  It is full of twists and turns and rapids and hidden rocks.  Remember once you go down this river, you never go back. 

When I receive one of those calls, I feel like this.  

 

I tell myself it will be all right, I think about what could happen, I call my family, my friends and share the panic.  I don't want to be one of those crazy wolf crying persons but  we all have to remember where we are in this journey.  We are not done with this river, yet.

 

So more appointments, some things to do and drop off, more blood to be let.  School is a good distraction.  I am picking up the language and looking for the secret handshake.  I think I have to do an MBA but that needs to wait until next month.

 

Floating Along.

 

 

 

 

 

 

Think of this as a Presidential Debate Answer

We are going to see the Kidney Doctor on the 25th of October.  Between now and then the following information will be gathered:

1. Blood Test for BK will be returned
2. New Creatine Tests will be run
3. Some Urine tests will be completed

Until then, because she has no pain or huge puffy feet and remains the right color we are just chunking along. 

Prednisone is going down. She continues to study and watch mindless television and walk the dogs.

I continue to go to school and try to figure out where I might fit into an organization.

Monday I am going to substitute in Kindergarten.... Should be fun.

Facts, not Reasons or Solutions.

Tacro level: Stable
No Stones

No evidence of a clot
Nothing backed up
No masses
No >>>>>>> fill in the space with words no one knows.

Kidney 1: 12.5cm  up from 11.6
Kidney 2:  12.7  up from 11.3

"What does that mean?"

No answers to what that means, yet.

Who knew kidneys could grow?  We learn something every day. 

Today I am glad there are no masses, blood clots and stones. 

Tomorrow, who knows what that will bring.