Did you ......

Drink enough?
Take you calcium chews?
Take your tacro?
Hold you tacro?
Give yourself a shot?
Get sleep?
Order your meds?
Have enough protein?
Walk the dogs?
Put on cream?
Fill in the blank                   

She is so tired of having the questions asked.
She puts up with it and does not have many slip ups.  Sometimes the drugs are taken when they need to be held. Sometimes the drugs are held when they need to be taken. Sometimes the sample cup is given at the right time or not. 

We are very used to it but it does not make it better.  I know we are supposed to put on a brave face and "just deal".  We are running out of "just deal" energy.  Every now and then we have to re-charge. So we just stop what we are doing and go downtown and go to Pacific Place and we go to dinner and we go to a silly yet wonderful movie.  I skip class and she stops getting ready for her tests.  She found a sweater.  I found a special something for the child that deserves everything and is so trapped in Cancer World.  (No it is not cleaver.) 

It is good. 

Finish your homework?
Clean the house?

Have fun?

Yes we did.

Reality...

We spent yesterday morning at the SCCA.

Meb was itching, not looking great.  No real improvement on her GVH.  It was unsaid but we both knew more high doses of prednisone would be the result of the meeting. 

The reality of the unmatched donor is starting to sink in.  I asked if they had different results from different points of mis-match and what to expect.  We didn't get much of an answer but GVH is here for awhile. 

The shocking statement was "This is very early in transplant."  I was dumb struck.  How could this be early, it has been 10 months.  We are about to do the annual follow-up, she has not begun her tacro (or as she said "taco") taper! 

Here we are, we are almost a year out and I thought we would be done.  Boy we are so far from being done. If is time to realize that this is never done.  Not really.  There will be better health in the future.  There will be sushi and real trees and food from trucks but it is here to stay.

So, we must take solis in the fact there will be good times and sick times but there will be TIMES.  Not everyone gets more time.

Okay, that is that.  Time to put more lights on the item that holds up a few ornaments.  A quick trip to the post office. Class tonight.  Final to work on.... Yard to clean up, Christmas cards to get organized.

See no matter what, things are normal, but in a new way.

Always Look Up and Cold Nights

Background

My dad started his practice in a little town in North Idaho called Spirit Lake.  It is about 30 miles north of Coeur d'Alene.  We did not have a television but our grandparents did.  We would walk to their house and watch things like Gilligan's Island and the Brady Bunch and Grandma would walk us home, part way.

There were lots of dark cold nights.  Clear dark nights. Cold, icy chilled nights.  But those were the best.  As we walked Grandma would point out different constellations, Orion, Cassiopeia, Big Dipper, Little Dipper, the planets.  It was all so great.  

I learned to always look up.  There was magic in the sky.  I don't know if it was magic because of the great Grandma time or the night sky or the cold.  It was just special. 

It also taught me to look and to see and to ask questions about things I did not understand.  It made me curious about the world around and above me.  It was  a great gift. 

As we deal with this weird time in our lives, that curiosity sometimes becomes stilted. Sometimes you just don't want to know.  You don't want to ask the next question because the answers are not the best. 

We are heading to the cold part of winter.  The morning sky has had a bright star with a smaller one behind it.  I found out it is Venus, big a bright, and Saturn, bigger but much further way.  They are traveling very close together for awhile.  The big one supporting the little one.  Traveling together for awhile. 

Our kids are so much in need of all the support the universe can give.  I love when it hops on board and adds to all the good things we can give them. 

We are so blessed to have so many in our Galaxy.  We never say thank-you enough but we know you are there and shinning and helping to make things better.

We found a Shiny Object

This is our Tree.
We went into the forest of fake and came out with a shiny object.
She even came with her own decorations. Easy Peasy...

This is the "You are still too vulnerable to have a real tree but maybe next year will be okay tree"

For Christmas Dinner we are having ToeFurky

Some day even WE will think it is a Silly Thing.....

So this search for the right tree, the fake tree, the artificial tree is not going well.  I of course want to put up a pink stick and throw some pots and pans on it and call it Christmas.  Sallyann, my much younger and probably more mature self, is not going for it.  Neither is Mary-Elizabeth. 

Yes, I know that in the scheme of things we are just being whiners.  We should put on our big girl pants and just get over it.  Big deal, we have to have a fake tree because even though the transplant happened 10 months ago, she is still on immunosupresents AND no end in sight and still complications and.......

Yesterday we were out doing somethings and were driving around and everyone was happily setting up the tree lots.  No amount of "re-framing" or "spin" is going to make this sadness go away.  It will take awhile.  We get to be sad and silly sometimes. 

So I shopped all night for a fake tree.  Nothing seemed to float my boat or make its way into my heart.  I think we just have to bite the bullet and go to Costume and Display and buy a tree.  It can be 4 feet and it will go on the little round table. It will be okay from a distance.  It will be fake but my brilliant child pointed out that we could give to another bone marrow family for next year.  That helps.

There are a lot of us out here.  On the edge of life having to be happy about all of this.  We are not happy, we are not grateful, we are not joyful..... all the time.  We are painfully aware of how close to the edge we are and try to muster joy and gratitude because if we didn't we would throw ourselves off the edge of this cliff. 

So we are moving forward, we are "just dealing with it".  We are going to take Pearl Ann (we found out she is the one that really stuck around) to the zoo.  We are going to then find a tree and we are going to be just fine.  We are going to plan a bunch of small events between now and then and life will be good and headed to great.

Maybe our tree will resemble  this turkey.

Perfection or maybe just Practice

It was perfect.  Perfect table, perfect food, perfect company, perfect flowers, perfect gravy and dressing and pies and Japanese Short Cake and Pumpkin bars.  Perfect wine and sparkling stuff.  It was wonderful.

Several loads of dishes and glassware are done.  The final putting away process happens today and all of it was done in the dishwasher.  (Not the Venice glasses but there are only 4).

I don't think it happened by chance.  It happened with years of practice.  It went sort of like a play. 

Act I
Chop and pre-bake and peel.
Dishes out, serving dishes labeled.
Silver out, polishing done
Jello Surprise completed (orange this year)
Tiny Pumpkins hollowed, flower arranged
Table assembled, all three leaves,
Pick-up 24.84 lb Turkey.  Complain that it is not 25 lbs.

Act II
Figure out timing, 5 hours for turkey, 35 for potatoes, 10 minutes for mashing, 45 minutes for sweet potatoes and yams in yummy brandy sauce, 15 minutes for rolls and 14.72 minutes for gravy
Stuffing completed, sweet potatoes , beans, assembled. Insert Turkey into oven....fade to nap time.

ACT III
15 minutes of chaos.....
Dinner is served.

ACT IV
an hour or so of eating and talking and sitting and enjoying the sheer wonder of it all.

Clear the table enough to have desert. Pumpkin and Pecan Pie....
More talking, dog walking, Jenga, more eating.


ACT V
First load of dishes, Bed

ACT VI

Put it all away.
Mail a package at empty post office.
Buy child her Christmas present (more dishes for next time).

Perception and Reality

So as I head to 60, I have the same goal I had as I headed to 30 and 40 and 50.  I have to look like Linda Evans with brown hair. 

In order to accomplish that feat, I need to shed a few of my Cancer World weight.  As we all know this is easier said then done.

For my birthday I bought myself a Fitbit.  It is a small devise that syncs with the computer and my IPhone and records all of my activities.  My stair climbing, my steps, how many calories I have burned, or not.  As any good device of this century it creates reports.

I see myself as a fairly active person.  I am always doing lots of things. Some say I never stay still for too long.  Well I am sorry to say the little nasty thing does not agree.  I do a fair amount of stairs, need to walk more and surprise, surprise, Eat Less... 

They have a scale that reports to the computer.  No way I Hell am I going to have one of those!!

Off to add some butter to something.  It is almost Thanksgiving!

NO REAL CHRISTMAS TREE

I have always loved Christmas.  All of it.  I love the season, the lights, the trees, the decorations, the warm feeling of Advent.  I love it. 

I have had a Christmas Tree, a real Christmas Tree every year of my life.  I have collected ornaments since I was in high school, I have decorated, crafted, matched and mismatched, I have created wonderlands of Christmas in my house.

I have cooked big dinners, small groups for multiple evenings of dinners.  As my friend named us the House of Big Meat, it is always a celebration.

If I had to choose one thing, one moment of Christmas and name it my favorite time, besides the dark church on Christmas Eve, it would be the dark house during the season when the tree is up and lit.  I don't even need many ornaments up, I need to fix my coffee, go to the living room and just sit.
Those quiet moments of solitude before all the "other stuff' gets in the way.  I love those times. 

I love to go find the tree.  Where will it come from? Will there be a different kind this year?  Will it look wonderful?  Will it have the right kind of branches?  Will it be fresh and last the season? Will it be quirky?  Will it smell wonderful? 

It is for me.  The tree is enjoyed by all but it is for me.  So this year, I don't get a tree.  We don't get a tree.  I totally understand the fear of fungus is real and present and not to be trifled with in any way.  I know it.  I know I should be happy that we get to have a Christmas and are not in the hospital or worse.  I know I should be grateful for all my blessings, I know, I know, I know, but it makes me sad.  It is a sign that we are not "OUT OF THE WOODS"  yet. 

Okay, I will figure it out.  I will make it good.  I will rent a tree or make a tree or find a branch that needs a home.  It will be fine.

What really makes us who we are.....

 The last few days have been a scurry of activity. Everyone made up for last years birthday that was spent in the hospital. I have been wined and dined and entertained for a week.  I am exhausted from all the fun.  So many great friends and time. The best is time. Time spend quietly in a small cozy restaurant with warm soup is wonderful and magical.  A cup of coffee, a small moment. Time is the best gift of all.

Birthdays are a time of reflection. A time to look back on what has happened in your life and then to evaluate just what you have accomplished and what else needs to be done.  Books to be read, trees to plant, places to visit. Not a bucket list, that sounds too final.  Just a moment to reflect on what can be done in a given amount of time. But then after reading War and Peace, I figure I can do anything.

I have been in Cancer World way too long and get angry about that on occasion.  While at Wicked this week-end, in perfect seats, Row O, I heard this song.  It made me think about how many special people have entered my life during our time in our Cancer World.  My life would have been less had I not been here.

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we areTo those who help us most to grow
If we let them.

The other gift from our time in our sort of OZ is learning to accept help and finding out what loving and wonderful friends I have. 

I am off the see the Wizard....

Today

“What day is it,?” asked Pooh.
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.”

 

I agree with Pooh.  Spending time with my daughter on my birthday is the best gift in the world. 

 

 

Cancer World Moms and a few dads...

We are the head of the team.  We need to be "large and in charge" because the team changes.  The baby docs,(interns, residents, medical students) come and go.  The Fellows are there for three years and if you are in Relapse World you don't even get one.  The docs rotate through.  Inpatient, outpatient. 

Your most consistent provider is your  nurse practitioner.  Karyn has been ours and we lost her when we went to Transplant. 

The long and the short of it is, The Moms are the ones that are always there.  We carry all the knowledge, the history, the deep memories of the side effects, the mix-ups and the things that work. To be fair, there are some dads but not many. 

We Moms have a predictable journey. After a few months of being in Cancer World you emerge out of your fog and begin to look around. When you do, the newbies come into focus.  As a Mom, you begin to take care of them too.  You take a Mom or two under your wing and help them cope, understand, figure out what is happening.  You let them complain and cry and more importantly, you let them know they have joined a very very exclusive, strong and much under valued group.  A group that only lets in 6000 or so  new members a year. It is a very small secret society.


At some point you become a Mom Guide.  You are sort of like the old crone of the village that dispenses wisdom because of your vast storage of knowledge.  You meet someone, you hear them speak, they find you are further on the Cancer Journey and you have become the one person in the universe that can help.  The problem comes when your child has not had the most successful journey. You hold back part of your wisdom because the newbies can't cope with all of your story.

Part of the early coping mechanism is denial.  As the doctors spew facts, and statistics and endless medical jibber jabber, you only hear the good stuff.  85% survival, most don't have recurring cancers......... 

You don't hear the "other stuff".  The heart complications, secondary cancers, dead thyroids, brain matter not forming, kidney damage, infertility.  You just can't hear it.  You have no choice.  You have to let them dump chemicals into your child and radiate them. 

So yesterday Darlis Elliot met someone.  The parent's were so relieved to meet a real person that had been through the same thing.  Same cancer, same age, same place.  Only the Elliotts have had to face the other part of the equation, the 15% .  Katie's cancer has gone from her bone to her lungs.  She is off on the world of "Studies" and more treatment and more.... who knows. 

Darlis had a moment of panic yesterday.  She was afraid to get too close because of what has happened to Katie. But Darlis will help this family and will give endless wisdom and guidance. She is worried she does not have the best story to tell them. It is a hard place to be.  You want to help, you can help, you don't have the best outcome to share.  It is an interesting dance, especially with the newly diagnosed. 

But, Darlis is an experienced Cancer Mom.  She will protect the new family, she will impart knowledge in the best sort of way. She will be able to make the new family's journey easier.  She will share the right amount of information when the new family is ready. She will find that helping them will help her be distracted from her own difficult journey.

We just have to keep moving along.....

Coming to A Realization and Coming To Terms.

I have been a in bit of a fog recently.  After hearing some good things for once, I decided I needed to make a pot of Sauerkraut Soup.  No now one else thinks it is a good idea but I went to the store and gathered all the ingredients. 

Kielbasa, potatoes, tomatoes, carrots, onions, garlic and sauerkraut. 

As I was gathering these key ingredients, I began to notice something in the grocery store.  Stuffing Mix, large stacks of boxed free range, shade grown, free trade, gluten free, caffeine free, chicken broth, Brussel sprout stalks, turkeys, canned pumpkin and.... oh dear.  Why are their little Pilgrims everywhere?  Halloween just happened!!!

I pulled a Karl Rove and convinced myself it was not true.  Denial is always the first step. 
I then panicked a bit.  I called Better Meats and they were closed.  No turkey ordered.  The table is not in order, the toasting flutes have not been gathered.  It is just happening too fast!!!

I came home, checked my calendar and just had to face up to it.  I have only a week to figure out dinner.  It is not as easy as it seems.

A. What kind of pie?

B. What kind of jello surprise?
C. Sweet potatoes and Yams?
D. Do we have time to order Ezells Rolls?
E. Anything special in the dressing?
F. Garlic Mashed or do we add a few parsnips or maybe some shredded carrots?  Should we use purple carrots?

Oh, yes, I have done this dinner dozens of time, I know the recipes, I always have the timing down.  It is easy.  That is why it is so much fun.

a. Always Pumpkin and something else
b. It is called Jello Surprise so why would I know now.
c. Yes.
d. I always give this job to someone else so I never
e. It will have some apricots this year because I have lots of them and I already the free range chicken broth
f. People are afraid of parsnips so I will do regular and then do some parsnips and add to some.

See it takes a bit of time.  We need to have a moment or a month to figure out how things are and what we are going to do.  It is hard sometimes but then lots of things are hard. 

What is not hard, is cooking a turkey, having friends over and enjoying a day we can spend with friends.

We have so much to be thankful for this year.  Some might wonder how we can say that but all I can say, is we are having Thanksgiving and Mary-Elizabeth is here to set the table. 

Now I do have a beef with the Democrats.  During the Roosevelt administration the Democrats changed Thanksgiving from November 25th to every 4th Thursday.  I would really like to have Republican Thanksgiving this year!  I am sure several will agree.

Sometimes the Dragon Wins and Sometimes he does noT!t

During my lawyer days I found a version of this on the wall in a small work place for the weary court house lawyers.

 

 

I am pleased to announce that no Dragon is winning in this household. 

 

We met with Dr. Tracolimus today and went over all the numbers.  I had been pretty upset the last time we met.  I was confused and angry and frustrated that we had transformed from happy kidney land to be careful because if you eat one too many pieces of sushi, we will be doomed for eternity to dialysis and eventually kidney transplant.  I have had quite enough transplants thank-you very much.

 

They had has some serious discussions and her improving creatine level has led them to back off from Stage three Chronic Kidney Disease.  At worst it would be 2, and could be less if she keeps presenting good numbers. 

 

Big sigh.  I have so afraid if we could go from nothing to 3 in a month, we could be looking for a Kidney sooner rather then never. 

 

Side effects of one transplant is enough.  Off to buy sauerkraut to make soup.  I will let you know if it is good........

It seem different this time.

There is this little voice in my head that tells me to organize 1500 blog posts and write a book. Maybe a Dummies Guide to Cancer World Survival. In going through Cancer part one, I am realizing how different Relapse World is from the first time around. There are two books here.

Part One is an easier book because in most of the cases there is an end in sight.  While no one believes it when they are starting Cancer World does become more manageable.  You learn that the schedule is a lie.  You can't count on counts. The side effects can be managed.  Essentially you learn to cope.  You learn to go with the flow, accept help and you let other people fold your laundry.  You can see the end and can sort of power through. 

Now there are plenty of bumps in the road.  Weird infections, blood clots that require constant attention, hair coming and going, different color chemotherapy, long lasting effects from all of this treatment.  It is hard.  It is excruciating.  Lots of people just fall apart.  But there is an end.  Once the panic subsides and you are able to look around it does not take long to get to "We have the good kind of cancer." It is doable.

Relapse World is ugly and treatment and the emotional roller coaster is so different.  First there are no answers that can be given.  It is much more terrifying because when it didn't work the first time, the doctors are more afraid the second time.   They pretend they are not but they are much more nervous.  There is no clear and certain protocol. No straight line.  It is more like the Harry Potter Maze.  Lots of dangers and low cure rates. They know that we can exit the maze unexpectedly and many have.

It is more frightening because they have to take out the big guns.  The dark blue chemo's, the big radiation machines, the big double lumen Hickman lines.  Nothing is held back.  It becomes very clear that there will be no passes, no skipping of chemo, no withholding steroids for an impending dance.  It is serious and terrifying and mindbogglingly.

But again, like last time, you settle into the ride and close your eyes more, retreat to watch 650 episodes of Dark Shadows.  You limit your contact with the outside world.  No big plans for trips are made, no end of treatment party is planned.  You begin to wonder if you will ever trust again. You get angry faster and more often.  You start to want to kill people who say things like "What do you do all day?"  "Why does Mary-Elizabeth still have to to go the hospital?" "Isn't it over yet?"  Its never going to be over!!!!!

I guess we are sort of like the Upper Classmen in a very small and highly competitive and exclusive school.  Our job is to be leaders and help the younger classmates through the process.  We share the secrets of how to survive in the hospital, and what much of the jargon means. We help the other parents by listening to them and assuring them they are not the first to be horrified by _______________________.  Fill in the blank.

As the Upper Classmen we are good sounding boards but are reluctant to share our stories too freely.  We remember the blood curdling screams that when off in our heads the first time we heard the word RELAPSE.  We know better then to let the new people know our story. 

The biggest difference now is the size of the group of relapse parents.  It is a much much smaller clan. Very reserved, very scared and have good reason to be. They don't here numbers like 85%, 90%.  They hear 40%, 10%, or even worse....  Plan a trip to Disneyland... and not in the happy Make-A-Wish sort of way. 

There is also the death thing.  I only remember the loss of two kids during our first round. Both relapsed before they were done with the first part of treatment and both died.  This time is different. Kids are dying before they even get to transplant. When one dies, we all have to work very hard to regain our balance.  Each time it happens it takes longer and longer to straighten up again.

The one thing that is not different is that we still are supportive of each other.  We still reach out, we still go the extra mile. We still have good things to share and lots of support and love to give each other.  We all live with the knowledge that we are fighting the most important battle of our lives. 

I still think we need to commit to cure this thing and learn to prevent it. 

Walking on the Moon..

I remember when John Kennedy announced that by the end of the decade, Man would Walk on the Moon.  NASA would have enough funding to make it happen.  The whole nation would get behind the project and it would happen. And it did.

I want President Obama to get up and make the following statement:  We will cure and learn how to prevent all childhood cancers by the end of the decade.

Why just childhood cancers?  Well because I think we should take care of the children first.  Their cancer comes out of the blue. Many of the adult cancers we know how to prevent.  The adults are going to be sort of like going to Mars.  It will be the next step.

When you hear your child has cancer, the first thing you ask after your nervous breakdown is "what causes cancer?"  Being told that they don't have a clue, makes you even more shocked.  No clues, nada, nothing.  It is quite shocking and a problem.  I blamed it on Meb's Dad, I wasn't serious but then I found out more kids on this side of the border get Leukemia then those that stay in Mexico. So America causes cancer.  I am sure I caused Mary-Elizabeth's cancer when I helped someone use lots and lots of Roundup before I knew I was pregnant.  I am sure of it. 

So for my birthday, besides someone to fold my laundry for a year, I want unlimited funding for childhood cancer research.  Instead of spending money on campaign ads, or to obtain Obama's college transcripts,  how about if we cured childhood cancer?  Karl Rove could spend the billions he raised to trash the Democrats on curing cancer.  He could lower his blood pressure and leave this life having done something positive. The People United folks could unite and do something good for the world. 

Wouldn't it be wonderful if everyone that gave money to the recent campaign could be part of the cancer solution instead of paying for all those really really boring ads and expensive plane rides from Ohio to Florida and back to Ohio with a stop off in Pennsylvania?

Just a thought.  There is an inauguration coming up soon.  I would love to hear magic words. 

Election Nights.....

Last night was different than 2004. We were at Children’s and Kerry lost.  Mary-Elizabeth had had some nasty chemo and had not really been very sick before.  As the states were turning red and clicking on the map, my daughter was getting sicker and sicker.  I also was a bit nauseous but that was for other reasons.

 

That round of chemo was terrible.  She was so so sick.  It took most of the next day to get her stable enough to go home.  She just could not stop vomiting. Last night was much better.

 

She has been a bit nauseous recently, not a good thing.  Not from Chemo but from her taper from Prednisone.  It is a slow taper and we are hoping it is working.  Every now and then something will happen that makes us wonder.  Her skin around her eyes and her mouth will all of a sudden get red and flakey.  It just happens.  Mom’s really expensive eye cream is applied. It seems to work but then we worry a bit more that ElleMae is not settling in as she should.  She appears to be strong and working but we need to have her like Mary-Elizabeth a bit more.  She needs to realize this is a team project and she is an important part of the team.  They all need to learn to get along, sort of like the House of Representatives, Senate and the President. 

 

Okay, I am done with that……

We are on cruise control.  No real news just hoping to have some good answers soon, expecting there will not be a change but then we can always hope.

 

I just wanted the Docs to be Wrong

It has been a couple of difficult months.  It takes time to accept and deal with hard information.  There is this cheerleader sort of thing that happens:

"oh it will be fine"
"I am sure they got it all"
"you have been through enough clearly God would not make you go through this again"
"The Docs assured you they got it all"
"Everyone is thinking about you and your going to be okay"
"You have to stay positive"

Boy we all want to join that other plain of reality.  It just does not always work.  Now it is very important to have a good attitude.  Not denial of the situation but be positive in a careful way. 

If you let it get you down and you sink into the hole that is depression, it does make it hard to do the right things.  Take meds on time, walk, eat right, relieve your stress.  It is hard to do that as a negative person.  It also helps to have a little cushion for the big blows that come your way.  We all return to positive eventually.

These last couple of months have been hard not only because M-E's kidneys are not happy and it came on so fast, but kids are dying and having relapses and new weird and strange cancers are showing up.  I feel like we are on a pogo stick that is slowly loosing it's spring.  It is hard to bounce back after being crushed so many times.

Someone suggested I just focus on Mary-Elizabeth's recovery  and ignore all the bad news.  Someone else's bad news could easily become our reality.  No one gets through this process without a huge village surrounding them with support, listening ears, laundry service, distraction duty, etc.  It is that very support that makes us able to help those who receive devastating news and be able to help them regain some of their bounce.

Today I am taking some of my anxiety and filling the yard waste...after some more coffee. 

How to Disagree

Seems like it has become almost impossible to show you true colors and disagree.  Politics has become a closeted issue. No one seems to want to discuss it anymore.  To really listen and understand, not just reject someone because you disagree with them. 

Hey explain to me why your a Republican or a Democrat?  Don't just assume I have a certain set of values because I vote one way or another.  Why I vote comes from a life time of observation, experience, my expectations of what the government should or should not do.  It is complicated, not just wrong because you disagree.

A Campaign is not just waiting for someone to say something stupid, a "Gotcha".  It is sort of like dating, it takes a long long time to really figure out the candidate.

I sort of like the long view.  I like consistency, I like decisions to be made without judgement, without stereotyping.  I like to think women have an equal stance in the world and not second class citizens. When I make a voting decision I want to make sure the person I am voting for thinks a lot like me.

I am only one generation from a family that was not always able to have a roof over their head, or food on the table every day, or more than one set of overalls to wear to school. The lack of a dose of penicillin could have saved a life if it could have been purchased.  When I look at a ballot that is in my mind. 

I have friends that are all other the:  They should work, they should go to school, they should buy their own health insurance...  Absolutely and we have the resources to make it happen. The very people that look down on those in difficult positions, many times claim to be Christians.  I wish they would review the New Testament about our responsibility to those in need.

Oh, dear, I think I am challenging my Dad.  He was a member of the John Birtch Society as a young man.  When I worked on his taxes the year he died, I found so many checks, big checks to Missions, and Habitat for Humanity and a food bank.  He recognized his need to give back. He did it without any fanfare.  He so remembered the hard times. 

He would have made you pay for a wooden spoon, full price. 

War and Peace

One great thing about having kids is the fact they introduce you to wonderful things like Barney and Mitt Romney Style (check out You Tube).  One of my gifts to my dad was Pat Conroy.  Together we read most of his works.

In 2010, I did the unthinkable and bought a hard back copy of his book that talked about all the books that had influenced him. My Reading Life. He had been a kid that could not get enough reading done in a day.  One of the books was War and Peace.  During the days of my surgery, Dad and I talked about the different books and both admitted we had never read War and Peace.  We decided it would be the book we both next read. 

I started it and realized I would never get through it without some help.  Wala..Netflix had the 1972, 20 hours or more BBC version.  Anthony Hopkins played Pierre and it was pretty awful.  But I slogged through.  Then I started. Then on January 3rd, Dad died.  If he didn't want to read it, he should have said something.

I decided I would read it.  That led to a Kindle because who can carry around a big book like that and then there were other books and other distractions like Leukemia.

I have been reading it off and on over the months.  It is strangely compelling. It is written in that grand style of the Mid 19th century, some 60 years after the Napoleonic wars.  It was obviously well researched.  Early 19th Century war and Russia are interesting in and of themselves.  Tsar's and serfs... Counts and Princes and I could never figure out how one gets a title. Everyone has the same name and not only that but they each have at least 2 pet names.  A chart is good but if you cheat and watch the movie or Cheat sheet before, it all makes sense.

It is full of Tolstoy commentary on war and peace and history.  I kept waiting for tirade's on serfs and Tsars, but he was a count and very much a part of that system.

It had been a part of "My Reading Life" for so long that it is weird to have it finished.  Since it was first published as serial in a newspaper like lots of Dicken's books I sort of read it like a serial.  It has been such a long process but it seemed to fit into my life at a perfect moment.  

It is not a beach read, It is a Big Read.  Mary-Elizabeth would not tolerate me reading it out loud to her.  Silly girl.

Oh and by the way, I am done whining about the kidneys. Can't change it. I think the God's will reward me on Tuesday next.

I wonder if they having books in heaven or whether it is enought to be able to meet and have dinner with the authors.  Boy you better have read their books first.    

As I Planned and Executed Dinner

I realized that I’m still mad.  I am confused but mostly I am scared.  I don't even know what to think.  After the rapid jump from 0 to stage 3, I am so afraid the next step is 4 and dialysis and transplant.  Since she has been so closely watched and there were no warnings, I am terrified.

I guess I have been in a more confusing place but not for a long time.  As you settle into Cancer World, you find there are lots of ways to cope.  You scream, you take care of other peopl3, you cry, your go to funerals and realize it could be worse.  You take up hobbies and you sulk.  You learn lots of stuff about cancer and it becomes your new normal. 

One thing you do really a lot, is convince yourself that there is an end.  You get through treatment and it is OVER. Okay so there are problems with executive functioning and there has to be extra time allowed for tests and extra accommodations, no problem. Blood clots, not a problem or a concern. Okay there is the Thyroid death but a few pills can fix that…  Yes and let’s not forget the surgical lengthening of the gastronemic muscles in her calves.  The yearlong house arrest, the loss of two years of school, the………. Okay we can do this.  It will be over, and one. Back to yearly check-ups and some worries and life will be good.  It will take a while but it will be good. 

Then……. Blamm slapped down by the universe.  This never goes away, it cann’t get better it can only get worse.  I don't have a lot of happy positive energy left or trust in the universe regarding how the world works.  Fool me once, shame on you, fool me twice..... 

 

Well we have been lulled back into a sense of security more than one time.  I don't trust the universe any more.  It is a fickle and evil place.  It just is.  "God's Plan?"  No God or god or Deity or controlling force plans cancer.  It is a design flaw. Nothing more nothing less.  Yes, good and graceful things come from such situations and we learn a lot about generosity and the goodness in our fellow beings.  We curse God and the gods because I believe no God/god would ever inflict pain and suffering as I have seen in the eyes of the children, the parents and the people around them. 

I have to believe in the design flaw theory of cancer and kidney failure.  As my friend Julie said:  "you traded certain death for no more cancer and chronic kidney disease." 

Yes I did.  Not the best trade I have ever made in my life.  But then Bush traded away Sousa.

Evil Spirits

The Celts carved pumpkins to keep the evil spirits away.  The Swiss carve turnips.  I light candles to send prayers to heaven after my prayers are completed.

What do we do?  There is always this push pull between cozy dark and scary dark.  A dark quiet house with a candle lit is so wonderful.  A bit of dark, a bit of light, a space to let your mind wander and create a place to quiet the mind.  Maybe we know that at the end of all this dark,we have some light to lead us in the right direction.

Cancer is dark. It is evil dark. It consumes more of the light then we can even imagine.  It does insidious things to people we love.  It is such a horrible light, life killing monster. It hides, it's spooky.  It creates huge empty crevis in our hearts, lives and the lives of our loved ones.

I hate when I see "lost a _________ today."  A friend, a child, a sister, a father. We all hope they are in a place of light and free of the darkness that is cancer. 

Those of us in Cancer World are so aware of how close we are to the evil darkness that lurks and snatches so much from us and those we love.  We are here with them and see the end results way too often.  But we are not a gloomy bunch.  We are carving away, lighting candles like crazy people, creating light and laughter and smugging sage and seeking good and positive things.  We are not running from the bad and evil.  We are conquering it.

With your help and love and support.