Mom's Decided to Move to a smaller place.

Okay, not unusual words.  Words spoken lots of times. There are so many people that transition every single day from their parent's their children, their friends.  It was not unexpected and Mom had joked and talked about it for years.

It is one thing to hear it.  It is another to really have to deal with it.  Lots and lots of emotions involved.  Lots of loss, lots of gain. Lots and lots and lots.  A life time of lots.

It is a reliving and re-letting go of everything that has been your life.  As drawers are opened and cleared of the assorted stuff that accumulates there is the picture, the small vase, the gloves from another point in time.  If feels like being drug along a zip line, slamming into a tree and starting again or backing up or zooming to the side.  It is an emotional mine field.

Mom and Dad were only in the Eugene house for 15 years.  Most of the stuff in the house is new to me.  Most was purchased after I left the next.  I don't have a lot of attachment to many of the things but still there is something about the Parental Stuff.  It is imbued with special magic. 

Mom's lamp, Grandma's table, Dad's change box.  Bits of history and juju are there.  Everyone has different memories about different things.  It is really interesting to learn what is important to everyone and why.  Alex loves the art.  David loves the Michigan Furniture, Belle is enamoured with a library table and the Hoosier.  I want the round table where we did puzzles.  Some of these things are more relevant than others.  I had no idea David loved the furniture.  Every single bit of it.  Belle is a bit more practical because of her ongoing and continuing transitions.  

None of us need anything.  We are living in full houses with all of our accumulated "stuff".  We all face the downsizing of our lives in the near future but there is still something, something about all of it.   I think part of the wanting of the "stuff" is the idea that having rescued the treasures, even the mundane stuff, it is not a real thing.  An era is not coming to an end.  We are not getting old and we are not facing our own mortality.  Life is not changing and transitioning.   We still have a place we can come to visit and revert to our 14 year old selves.  

Tomorrow Mom has her total hip replacement.  There is nothing to tell she won't do well, figure out how to get in and out bed and be able to come home to totally recover.  We will start the process of packing the stuff she is taking to her new place and then begin the systematic process of sorting and ridding the house of it's remaining contents. 

It is a process but I have lots of experience with process and so do the other mamebers of this family.  

That is how it feels today.  

Off to help the other Book End

Mom is having a total hip next week.  She will be fine because she always does well, for the most part.

I am leaving in a few hours to spend some serious time there. Not only is Mom having a hip replaced but she is moving to the Country Club..... Oh it is pretty spiffy.  Should be a good move for her.

So in order to do all of that I really have to do some house stuff. Make my garden easy to water. Figure out what to take, finish all the laundry.  Take the right stuff and not just stuff.  What do I really need.  Trying to fit into three maybe for bags.  Shoes, cloths, electronic and needlepoint and the "other bag".  The bag of just stuff.  Extra tooth brush, the deodorant I may have not packed, socks, more shoes, a book I have not read.  The weird things that seem to like to go along, odd hairbrush, some shampoo in case I did not pack one.  You know, the extra for the unorganized and non list making person. 

I am having a hard time going to Eugene.  It seems hard this time.  I also have the pull of my yard.  I love my back yard and it's quietness.  I really learned to love it during Cancer Part I.  Mary-E had a number of camps and trips planned that summer and she was able to participate in most.  I had several points of solitude.  I would sit in the back and just be.  Just be with the terror and anxiety.  It must be sort of a magic place because it always made me feel better about things.  Just having a special place to sit and process and chat with God and the universe is great.  

I look around and realized how many angels and Marys and Buddhas and things are tucked into the back yard.  It is a chapel.  A quiet place to think and to ponder and to complain and to deal with life during times we feel lost and alone and scared.

My silence over the next month will be from lack of good Internet, not big scary issues. We tried to get DSL up and running at the Eugene house but failed. They did offer us a two year plan but we said "ARe you kidding me, it is a college town.  Even Elmira has DSL!!!" and hung up in disgust.

I will be stealing wireless when possible.

Enjoy June.

Connections

As I look back on my life, I can pinpoint times when very significant connections were formed.  These were times of change, transitions, endings, beginnings.  These were times when groups of people were beginning new journeys together.  While we pick up people during our lives there are just those special times: Freshman year of college, first year of the first really job, graduate school,  the like. 

I realize being a bonified member of Cancer World has done the same thing.  While we are all in the same boat much of the time we all have different journeys.  Some good, some not so good.  We often don't know last names or diagnosis or prognosis but we know the pain that binds us together.  We know the fear and the terror and the anxiety  of waiting for scans or counts or waiting for the match notification.  The unique pain of watching the chemo or the blood or the weird green platelets drip into your child's heart via a port or a Hickman.

We all live in terror of Relapse, Re-occurrence, Secondary Cancer or late stage side-effects.  We are caught in the same web avoiding the middle. We fight against it but we are here together, to support, cry, pray, plead, listen, what ever is needed at that moment, for the person entering the web for the first time or the last.  We are here together.  

Some think this is a godly plan of further shaping us and for growth and for......  I just don't believe any God, Any GOD would ever make a child suffer to help a parent learn to be more patient or kind or understanding or more giving.  I believe our children are in this web with us just because.  Luck of the draw, or should I say bad luck.  My God does not make little children suffer to make a point. 

I do believe once here, our needs are taken care of in amazing ways.  The comfort of others comes forward in miraculous haste.  The right doctors, the right nurses, the right donor, the right meal, the right phone call the right person to share their experiences with you.  That is where God is, with the kindness and love and support.  Faith requires you to rest back and let it happen and accept what comes your way.  No requirement to be stoic about it.  No requirement to be happy or accepting.  There are huge fights and battles and challenges and our involvement is required and needed.  There is deep disappointment and loss and grief and agony and helplessness.  It all is often just too much.  There are times you really don't think you can stand one more bit of bad news.  One more moment of sadness.  But reality is you can. It passes, it subsides, it fades a bit. 

It was suggested I break away from those at Children's.  Stay away from the despair.  I might be on the outer edges of the web again but I know I can return to the downward spiral and head to the middle of the web in a blink.  No more could I leave those I have such powerful connections to then fly of my own power. 

Spider Web is the strongest connector in the world outside of the bonds between Cancer Mom's.

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.
 

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.  

 

 

   


  

Brother David and his Family is Here and It is Interesting.

John and Erika are both way grown up.  John is not taller then his father but will be soon.

There is a family wedding for  my baby brother David.  His brother is getting married.  His "bio bro."  I remember the day he called me and asked for help to find his other Mom and Dad.  I was able to talk to Dad about it and he was reluctant to give me the information about the doctor who handled the adoption.  Dad was afraid I would create a problem for the family by making inquires.

I assured him it would be a simple thing.  I would ask the Doctor.  He would relay the message.  The Doctor would give the mom my phone number.  If she wanted to talk to David she could call me. Many think it was a worry that David would want to leave the family, Dad was worried David would be hurt.  But David being David was just wanting what he wanted. He wanted to reach out and I helped him do so.

I made the calls.  The Doctor was more than excited to hear from me.  The family had been friends with the doc's family and he told me we would hear from them.  Within 20 minutes I heard from Pat, David's Mom.  She was very excited to talk to me.   We talked for awhile and filled me in with what had transpired in the last 25 years.  David had two brothers, a Grandpa, a step dad, an uncle a famous Seattle Great Uncle and an assortment of other family.  I let Pat know David would call when he could but that he was gone for the week-end.  While I complain lots about TV is not a good source of information.  This worked out just like they did on Oprah.

My next call was to David.  "what!!!!!"  he so kindly said when he answered the phone.  Rude, Rude, Rude.  I said "Fine, I have the phone number for your Bio Mom but you have to be nice to me."  Phone hung up.

Ring, Ring, Ring, "Hey sweet wonderful and most special sister, this is your loving and wonderful brother, give me the number please."

He called and they talked for hours.  It all worked out just fine.  We have all been together over the years. Lives inter twinning.    When David graduated from college we had a big event.  Lots of people there.... David was sitting in a room, Dad was in a chair, Mom was putting her legs up and David said to Mom:  Pat is my mother, you are my Mom"   David had it right.  

He loves his family, all the various branches.  Pat has always been very appropriate about how she comes and goes in his life.  There is a relationship and a warmth and he is family, but David says it best.  "Sis, your house is like going home, just like Moms."  Sometimes when I introduce David there is a mention of family resemblance...  There is a deep deep connection between us.

David came during Mary-Elizabeth's time in the hospital for transplant. He bought her a TV and they watched together.  He was horrified at what had been provided. He dismantled the old TV, moved it to the spare room. He spent time with her, talked with her.  He was very relieved to see her now.  He has not seen her since transplant.  His joy in seeing how she looked was great affirmation as to how much progress we have made.

We are all family in some way, people come and go, we accept them when they come, we love them from afar and enjoy them w

hen we are here. 

Here is what Mary-Elizabeth Believes.... Philosopy Paper Turned in. No grade yet.

No Human Nature is the Best Theory of Human Nature

 

            It was not until Socrates, the philosopher, decided to start studying human beings, did the philosophical study and debate of human nature begin. As time grew onward, more philosophers followed and tried to determine what key phenomenal features humans possessed. Those certain features that made human beings so unique. Thus creating different theoretical outlooks of human nature. With each of these theories of human nature having their own strong points and faults, we run into the issue of how we go about choosing which theory is most reasonable and the one we should believe. This is where the four criteria, used when evaluation worldviews, becomes handy. The four criteria are consistency, coherence, comprehensiveness and correctness. These criteria give us a way to analyze and decided for ourselves which outlook does the best at having no contradictions, having all the parts support each other, takes into account all the data that is available to us, and gets to the truth. In this paper, I will discuss how existentialism is the most sensible theory of human nature.      

            In my exploration of existentialism as the most reasonable theory of human nature, I will begin by define what the phenomenal features of human experience are and explain what I believe to the most essential features in the philosophical study of human nature. Only then will I continue by demonstrating how existentialism, the outlook that I believe is most correct, addresses these phenomenal features that I have discuss beforehand. Like every philosophical theory, not everyone is in agreement with it. Subsequently, I will explain an objection that might be brought up against the points I intend to discuss and will follow the objection with a response. Lastly, I will wrap up my essay with a concise summary of my conclusions.  

            In the philosophical world of the study of human nature, there are phenomenal features of human experience. Phenomenal features of human experience is just a fancy way of saying apparent key features, or data, of human beings. Essentially, it is the appearance of what is true about the understanding of ourselves as humans. It is the starting point when evaluating a philosophical theory of human nature. For me, I consider the important phenomenal human features to be that there is no pre-given nature. No pre-given nature means we define who we are to become. We are completely free beings. This means our values, truth, morals, purpose in life, and rules are subjective and personal. In turn, we construct our future and destiny by the choices that we freely make. However, because we are radically free, and unable to escape this freedom, that also makes us responsible for the choices we do make. Every choice not only effects ourselves, but those around us as well. Furthermore, as humans, we are unique dignified creatures that are a part of nature.

            I believe that existentialism is the best theory of human nature to address the phenomenal features I laid out earlier. Existentialism is by definition a theory that makes human life plausible. It starts on the mental side of things, and states that every action we take and choice we make, “implies a human setting and a human subjectivity” (Sartre 10). What is meant by this, is that existing comes before our human nature. Jean-Paul Sartre, an existentialist philosopher, describes it best, “existence precedes essence, or, if you prefer, that subjectivity must be the starting point” (13) when it comes to human beings. Sartre continues to explain what he means by existentialism. In his explanation, he states that, “there are two kinds of existentialism; first, those who are Christian….and on the other hand the atheistic existentialist” (13). Existentialism leaves room for both religion and those who are atheist because they both believe existence precedes essence. Atheistic existentialism is what Sartre himself believes to be more coherent. For him, God is a contradictory combinations of agent qualities, characteristics that seem to belong to a subject or person, and being qualities, characteristics we associate with things or objects. For example saying God is unchanging is a being quality. That would mean that he does not act or is active in any way. Nevertheless, active is an agent quality given to God. Sartre believes that since the idea of God is contradictory, that God does not exist. This is where things get little complicated. Since Sartre says there is no God creating humans and, “man exists, turns up, appears on the scene, and, only afterwards, defines himself” (15), then this means that his theory of human existence is not one of human nature. There is no human nature due to the fact there is no God to create this human nature. This is somewhat ironic since I am arguing that existentialism is the best theory of human nature, which really means the best theory of human nature is no human nature. Sartre goes on to explain that we do have a nature when we are dead, but it would not be a human nature since once we are dead, we are no longer human. We are not human when we are dead because when we are alive we are human. When we are dead we are not the same as when we were alive. Therefore, we must be something else when we are dead giving us some kind of nature, just not a human one. Theistic existentialism does say there is a God or human maker, but does deny that this divine creator pre-exists human nature. What this all means is that with no God, or no God pre-existing human nature, and no nature to define who we are, we are radically free beings. “Man will be what he will have planned to be” (16). All the choices we choose to make, shape who we are and are freely chosen. Additionally, since we just exist, we are part of nature because we are not given a nature. Sartre says, “[externalism] is the only one which gives man dignity, the only one which does not reduce him to an object” (37). He is referring mostly to materialism which reduces all living things, including humans, to substances. I agree with existentialism on this point because I do think that humans are more than just the elements of which they are made.

            Friedrich Nietzsche, an earlier existentialist philosopher, has the same ideas as Sartre. Through a story about a Madman, Nietzsche explains that because the belief in the existence of God no longer shapes the way people carry out their lives, culturally God is dead. Subsequently, with no God, there are no longer standards which allow us to evaluate things. This means we cannot make judgments, whether morally or otherwise. We do not have a standard in which to value or find the purpose of things. Nietzsche determines that we must take the place of God. We must create our own reality and rules. All our values, morals, purpose, and truth are invented by ourselves making them all subjective and personal. For instance, gold, silver, and platinum are all considered precious metals. These things did not come with a sign on it saying “high value.” We created its value. It is the same with salt. In World War II it was rationed and therefor very valuable, but now it is not a treasured commodity. I consider a dream catcher that was my grandfather as one of my prized possession, but to someone else it is just another dream catcher with little value. We all value things differently.

Nietzsche also explains that we invent the notion of truth. Truth is just using words in a consistent way. Therefore a lie would be not using words in that consistent way. Both Nietzsche and Sartre reach the conclusion that we create our own rules, morals, truth, values, and purpose. As a result we are completely free and we shaping who we will become. “Man is the future of man” (23) and “man’s destiny is within himself” (36). Sartre clarifies that this freedom is not something we can escape from since even trying to fail to freely choose and define ourselves, is actually an expression of our freedom. Moreover, as free humans, “once thrown into the world, [we are] responsible for everything [we do]” (23). We are responsible for the choices we make because they not only will shape ourselves, but our choices will affect others. Alternatively, Nietzsche believes that, “one lives for the day, one lives very fast, one lives very irresponsibly; precisely this is called ‘freedom’” (Nietzsche 39). He does not think we should be responsible for the choices we make. I do think part of what Nietzsche says is true. I agree there are those, including me, that “live for the day.” Personally I think that it is not a bad thing to live every day as if it would be your last. That does not mean I think we are irresponsible for the choices we make when living every day like the last. Like Sartre says. “Everything happens as if all mankind had its eyes fixed on him and were guiding itself by what he does” (Sartre 20). We should be responsible for whom we become since we made those choices that make us who we are as well.

       Not surprisingly, not everyone agrees that existentialism is the best theory of human nature. There are those, including the post-modern philosophers such as Walker Percy and C.S. Lewis, that would argue that with everyone having subjective morals, values, and rules, it will lead to relativism. There is no objective ground for any shared values, morals or nature for that matter. Subjective morals would mean everyone would be practicing different morals so no one is ever right or wrong. It would be my argument that the fact that everyone one is free and must choose themselves is in itself the value of authenticity. There is also the value of solidarity which is the realization that the choices I freely make entail that it will be a model for others. Furthermore, Sartre states that although it is impossible for everyone to have a universal nature, “there does exist a universal condition” (38). He goes on to say that the “thinkers” of today talk more about the human condition then human nature. By condition, these thinkers actually mean “the a priori limits which outline man’s fundamental situation in the universe” (38). “A priori limits” are limits that come from logical reasoning and not from experience. They do not require hard evidence to be considered to be true. These limits are both objective, since they are found and recognizable everywhere, and subjective because they would be nothing without man living freely and determining his own existence with a reference to these limits. One example Sartre gives, is that it may differ what family different people are born into, but it does not differ from the fact that they must exist and live. “Consequently, every configuration, however individual it may be, has a universal value” (39). Every ‘configuration’ can be understood by man making it a universal value in that respect.

            In a nutshell, existentialism for me seems like the best theoretical outlook of human nature. It is the only outlook that gives humans dignity by not reducing them to mere objects as well as has room for both theists and atheists. Furthermore, existentialism states that “existence precedes essence.” We are not given a nature prior to existing, meaning that we are entirely free beings that define ourselves in addition to our own destiny through the choices we make. Despite being free, we are still responsible for our choices. Being radically free also means that our values, morals, truth, rules, and purpose in life are subjective and individual. Some would say that this means there are no shared values, but authenticity and solidarity are two values that are shared by everyone. Not to mention that every “configuration” has a universal value. This all goes to show that not having a pre-existing human nature turns out to be the most reasonable theory of human nature in my opinion.

 

 

 

 

 

 

Bibliography

Nietzsche, Friedrich. The Portable Nietzsche. Trans. Walter Kaufman. Penguin, 1954. Print.

Sartre, Jean-Paul. Existentialism and Human E

I Remember When

Life was not about cancer and side affects or is it effects,

When we only had one kind of phone,

When all cars used some sort of liquid that went into the tank,

There were only three channels and no remote control,

No one had a blender, a food processor,  a chopper, a wand blender,  a juicer, a Vitamix and a Bullet,

Salad came in heads,

There was just one kind of car seat,

We only skied and tubed,

Salt was not any color other then white,

We did not know how bad McDonalds was for us,

We used sun tanning lotion and not sun screen,

We read books that had covers and pages,

We watched movies in the theater,

Steam came out of kettles and not from washing machines,

Parking spots were not compact, regular, electric charging or now...

 

 

Only in Seattle.

The Black Hole that is Cancer World

We are on the edges right now.  She is better. She is doing normal things.  We are traveling a bit to familiar places.  We are visiting places like the Zoo and Aquarium.  We are making plans. We are at the hospital as a visitor and not a patient.  We are edging to the part of the world where we can pull free of this votex that has held us for so long.

It makes me crazy because I am afraid to believe we can make a few steps and be out of reach of the fear and anxiety and the endless worry.  There has been some discussion about whether or not she could go on a white water trip with other cancer survivors.  Can she go, should she go, will she be in danger?  Do they allow a child in bubble wrap into the boat?

We were in CleElum at Dairy Queen.  We stop, we imbibe, we sit in the same place. I count the number of trucks coming through the drive-in.  During our stay, we talked about the danger of falling out of the boat and hitting her head and bleeding to death.  I told her I would much rather she die in some sort of sporting accident than sitting at home waiting to start living.

Maybe I can say such things because I don't think there is any possibility she would fall out of the boat and hit her head.  Freeze to death, a real possibility.... but again I want her to learn to walk on her own again.

This trip has a doctor, a nurse and an EMT. It will be fine. 

I hope.
I know.
I pray.

Long Drives and Short Stops

Went on a quick jaunt over the mountains, through the high desert, through the winter wheat fields to Spokane. 

Watched Samuel Page become an Esquire.  He has only the "bar" to jump over and then he is off to work on his life as a lawyer. 

Gonzaga does it right.  Lots of good speakers, some  nice bag pipes and a president that looked a bit like Dracula but then maybe that was what he was going for with a bunch of new lawyer wannabes as his main audience.

Mary-E was able to catch up with a couple of her friends. One friend graduated, another will be there next year.  Spent some time with Father Housman.  He took us on as a special project during her transplant.  He some memory issues but eventually makes the connection and then becomes totally present for us.  He had a stroke 5 years ago and taught himself to walk and talk and all the rest.  He will be a good guy for her to have around.  He walked us out and then began to walk like a bat out of hell.  I think ME nailed it when she said, he taught himself how to walk and is like a toddler, he has one speed.

It was a good way to begin to grasp the real possibility of returning her to school.  She is willing to leave the Children's Hospital bubble and feel better about it.  Little connections to what she knows and remembers.  Leaving happened so fast.  Hopefully re-entry will happen with a bit more control and organization.

We have been on the world's longest road trip.  Time for it to come to an end.  Tires are good. Oil has been changed. Car will be washed.  Three months.  We will do the trip again and when we do it will be to end Cancer Part II.  Need to figure out something spectacular to celebrate, other then a Blizzard at Dairy Queen in CleElum.

Sometimes little bits of good news is great news but sometimes it makes you very sad.

A trip to SCCA happened today. Lots of news.  Most good.  No complaints should be had. 
Kidney's Happy
Weight down
Liver better
Triglycerides almost normal  (658 at one point)
Cholesterol almost normal
More vaccines can be done
Magnesium NORMAL!!!!

Good Good Good.

But new cells are still too feisty.  No more prednison taper for two months. 

Long term, its okay.  Lots to celebrate. Lots to look forward too. We know the plan, we know how this works.

But.......
She is so compliant, she does everything they tell her to do. She knows she should be happy. She is making progress but it just does not seem like it.

In her mind, she needs to be off prednisone and into the cute Lucky Jeans she tried on a couple of weeks ago.  She has had several people not recognize her because of her cheeks.  She also had the experience of the tall skinny salesgirl be rude to her at Nordstroms.  When Mary-E asked if they carried any 18s in the dress department she was snide and told her no and sent her upstairs to the old fat lady department.


Lots of tears of disappointment flowed last night.  She was so so sad. In her mind she was going back to college this fall with no visable signs of what has transpired.  

Sometimes the tears need to flow. She keeps those tears so so close to her heart so much of the time.  Sometimes she can't be a trooper, a sport, an inspiration.  She just has to be a sad child who had cancer twice in before she turned 20. 


Tears are healing and help release toxins.  They need to flow and help the heart have a some room to beat freely.

Time to pack the car for a short road trip to Spokane....

Ground Hog Day

I love the movie Ground Hogs Day.  Every day is slightly different until you get right.  What a great concept but like many things it is not a reality. We might be repeating but each day we have to move forward.  I am beginning to see some repetitive challenges in my life and I am not amused.

So, we will try and get away from the drama.  No more cancer in the family.  No more joint replacements in the family.  No more trauma and the ensuing drama.  We need some time away from all of it but then I feel like a traitor because there are some many people that are still in the repeat mode. 

We take a few steps further away from treatment and appointments and do some normal things.  Look for dresses, look for shoes, look forward to moving beyond the 1 hour bubble.  Even while doing all of that, there is a pull. A need to look back over our shoulders to see how everyone else is doing.

Yesterday we were shoe shopping, or I should say Mary-E was shoe shopping.  (Her wide feet must be from her father.) She wanted (she gets to pay) new white sandals.  While shopping we found these shoes.  Katie Elliot has decided to wear ruby slippers until she is done with cancer.  She did not know they were now summer appropriate.

 

We are moving forward with the ability to handle most everything because we have had so much practice.  Every person, every event, every moment of doubt and despair helps you either deal with your own trials or someone else's.  While we move forward and repeat our days we are always looking  back to make sure someone behind us is not in need of help or sparkly shoes.

 

 

 

Major Distractions.

Amazing how filled up the calendar can become if you are not paying attention.

I planned to visit mom sometime the month of May.  Seems like a good plan. 4 classes on Monday only, Only one really big appointment on the 9th.  Oh yes, there is the visit from Brother David and his kids, Sam's Graduation in Spokane on one week-end, some subbing...  Oops, the whole month is gone. 

So on the spur of the moment, I headed to Eugene for a few days.  Some laundry, some kitchen cleaning, some cooking some Doctors and facility visitation, the amputation of Mia's tail.  I am home. 

Mom found a place that she really likes, the dog is on great drugs as she adjusts to being a hamster dog.  Mom is getting a new hip at the end of the month.  Life is nothing, if not interesting. Belle has kicked me off the Wisconsin to Albuquerque cross country drive.  I will be helping mom recover and going to school.

Mary-Elizabeth stayed home and finished her philosophy of human nature paper.  I just read it.  My daughter is a theistic existentialist.  I will put her paper up sometime soon after it has been turned in to the teacher.

I may have to again read all the books she is reading like I did when she was in middle and high school.  I don't think Nietzsche and JK Rowlings are on the same level.

Off to school for class 6, 4 more to go.  It is going to be a busy crazy summer.

Food Garden at Seattle Children's Hospital?

Oh, I will be taking pictures and asking questions today. 

I have decided I have two passions in my life.  One is increasing awareness of the need for bone marrow and double cord blood donation and the other is making the food they feed the cancer kids better.

I am going to visit with the new head of dietary today.  Pictures later....

Fellow Travelers

I used to teach English in Dietrich Idaho.  It was a great experience. As I look at many of my contemporary's children and realize they are as old as I was when I started teaching, I wonder what Wayne Perron was thinking. 

He hired me over the phone because his wife Carolynn thought I wrote a nice letter.  It was an adventure to say the least.  It was hard, and challenging and frightening all at the same time.  But during those years, I picked up some great friends. People still in my life. 

I left Dietrich after 5 years for law school.  Again another adventure.  One filled with conflict and anxiety and angst.  More deep and lasting relationships.  The sort of relationship that a moment, a hug and a cool beer can be all that is needed to melt away the years. 

I came to Seattle and built a life.  A good life.  A life full of friends and colleagues and clients and family and a faith family..... a life.  A life with deep deep roots.  Sort of figured out I would spend a number of years here continuing our life. I tried to escape to Eugene once but the planets did not align and here we stayed. 

It was very good we did because I was not aware of a new adventure and challenge I would face in 2004 and again in 2011.  Never figured my whole life would be tossed up in the air and hijacked not only once but twice.  I would be making new friends, new fellow travelers to add to old.  I have again gathered a new clan of Mom's and Dad's and other assorted loved-ones.  It is not a journey I wished to take.  It was a journey that swept me along for awhile before I found my footing in this strange new place called Cancer World.  

I looked at my daughter today as she semi-slept waiting for a blood draw and realized she looks great compared to others in the waiting room.   We are almost there.  We might have spotted the tunnel. I can now see the end again. 

We were sitting in seats we had occupied when we went to see the nurse for her Pre-Op in August of 2004.  She was going to have a biopsy taken from the bump on her head.  As I sat in those very seats so many years ago,  I said a small prayer and thanked God I was not waiting for the Hem/Onc docs, just the brain surgeon.  How weird is that?

Well as odd as it may sound, our fellow travelers have made this a journey worth taking. 

 

 
We are headed back to this child.....   one day, one blood draw, one appointment at a time.

 

I abandoned Dante but HE IS BACK. Level 8 has lots of levels.... Bolgia 1.

So conscious fraud and trenchery.... interesting if you think about it. The other levels are a myriad of bad human behavior like murder but deep in hell and in Dante's mind this was worse.


Bolgia 1: Panderers and seducers march in separate lines in opposite directions, whipped by demons  Just as the panderers and seducers used the passions of others to drive them to do their bidding, they are themselves driven by demons to march for all eternity.


Pandering: is the act of expressing one's views in accordance with the likes of a group to which one is attempting to appeal. 

In cancer world we really don't get much of this, at least at Seattle Children's.  We do see the adds for places that are almost guaranteeing a cure but they must have anti-pandering classes all the time for everyone.  As parents we have a list of stuff we want to hear.  We want to hear only about unicorns and rainbows and that there was a mistake and it is all over.  

We do a fair amount of "Self-Pandering" .  We often don't want to hear the truth and we do what we can to make sure we only hear the things we want to hear.  She will be okay, she will have a long full life, she will be able to have children because 1% is really good. 

Maybe there was a special level in Hell for panderers because as a group, we fall so easily for the good news. 

Seduction is the process of deliberately enticing a person, to lead astray, as from duty, rectitude, or the like; to corrupt.

I read this and laughed a bit inside.  Oh are we easily seduced as a group.  Just watch 2 minutes of commercials.  Creams and pills and instant weight loss.

Our biggest fault is if we just follow the rules, inject poison and death ray our children, it will all be okay. Maybe just one more round, one more poison.  Maybe if we just give it time, maybe if.....

We are all seduced into thinking it is going to be okay.  Sometimes it is not. 

I don't think there is any harm in hope and I believe in Unicorns 



 

You Know Mom...

I am done with being treated for cancer.  If it comes back again, I am not doing it again.

Yes I do.

Okay.  So what are we doing to do for Alistair?

I don't know yet. Lets think about it.

Okay. 

Where are we going to have pancakes?


We were just standing out side by our new little free library and those words came out of her mouth.  No big talk, not deep discussion.  I told her today about Alistair's failure to go into remission and the  new plan.  We know what that means on many levels.  While we pray and plead and light candles and pray some more and boost our Hope Levels, we know that this is zero hour, dark thirty, back to the wall time. 

I asked her if I did the right thing by telling her and she said yes.  Cancer takes so much away but adds a new dimension to your life.  It makes you cautious to get close to people in your own life boat but the people in the boat are really your best friends.  When one is having trouble and in danger everyone is in danger. 

There are no words right now.  We are going to go have pancakes and drop by the church and light a whole bunch of candles. 

Questions that Cann't be Answered.

Why is the D only good if it goes in one direction?

Where do you live?  By the Zoo

Why do you live so far far away!?

Why don't you have hip hop music on our IPOD?

Why don't you just hook up to Pandora?

Why didn't Jordyan share her brown pencil?

Why are you fat?

Why is the clock moving the same all the time?

Endless whys. 

Three days with those under 8 is good for the soul.  There is no doubt about it. 

I think these last few days have helped make me read,

to catch up on Facebook and my own e-mails.  Sometimes God knows how much your "I am can take anything that comes my way" meter needs to have in reserve.

So my question is WHY DOES ANY PARENT HAVE TO HEAR THE WORDS HOSPICE?.

I have written and kvetched and whined about lots of words.  Cancer, relapse, remission, GVH, Kidney Disease, Chronic, AVN... my list is long and complicated. 

I have feared and envisioned works like Hospice and Quality of Life.  I have never had to hear them come from the mouths of our much trusted healers. 

Alistair's parents have heard these words while I was answering a million other questions.

They are going to try one more time, one more round of chemo and a million and one more prayers.  http://conglomerationofjoy.com/2013/04/23/out-of-body-experience/

I can only report, I am beginning to really need some answers. 

And soon THANK-YOU VERY VERY MUCH.

Here is the link to Jai's Blog.  I am out of words and answers for today.

SO How are things going? Good?

Seems like such a simple question.   Sort of like "how are you?"  How to answer.  There are lots of ways to answer this question but generally people just say "Great."

It is a good question and we ask it as a matter of course.  As the person answering we always makes a split second judgement.  Do we share the reality of what is happening or do we just say... "Fine" ?. Most of the time we say fine.  It is easier than the rest of explanation. Usually people don't want to really know and we don't have the energy to dump on them and then take our energy and try to make them feel better about how bad it is.

It is always nice to ask and I would never ever suggest you don't because that can be awkward.  On more than one occasion there was a moment when I mentioned Mary-Elizabeth and people were physically relieved and stumbled over a few words that when translated meant:  Oh Thank-God I didn't' want to ask if she was alive.

Cancer Parents are not the only ones who do this. There are so many things in people's lives they don't talk about.  Deep disappointments, loss, pain, fears and simple terror.

Our brains help us cope.  I was listening to NPR and a doctor from Pakistan was explaining how his people coped with constant bombings like the one's in Boston. Their country has been under a sort of self attack for decades.  He said you just move on.  You know it is there, you go on with life.  You never forget but it is not a life stopper. 

We see kids with no hair, braces on their legs from, ports, piics, catheters into their brains.  Their haggard parents have given up jobs, and careers and marriages and any semblance of normal life.  But, faces are covered with smiles and gentle words are said to the children. We know how hard it is to have a cancer kid a CK but we also know that it could be worse.  We all move on and make the best of each moment because we know it could be a lot worse. 

"So how are things going? "

"Great considering?"

"Tell me more.".............
or buy me a cup of coffee, or offer to take out the garbage or.......

Good news is such a relief

So we go along and we do appointments and blood draws and more appointments.  It is all relative.

We rejoiced in the fact Mary-Elizabeth does not have to plan her life around life long  blood thinning with rat poison. Good news?  I a weird sort of way it is good news. She is 20 years old.  She should never have had blood thinners in the first place.  But as a Cancer Mom one begins to grasp at anything that is not a disaster.  Good news is something not a disaster.

Second bit of news.  Her triglycerides are 300.  300 is a celebration in Post-Transplant, not off immunotherapy world.  In the real world it is a disaster.  300 would set off bells and whistles and drugs and more worry.  In Cancer World it is a huge triumph. 

We take them where we can get them.  "Oh we only have 34 more days of isolation and antibiotics."  "My child is only stage 3 not 4."  "Mary-Elizabeth has the good kind of leukemia we are so lucky." 

It is a lesson in how amazing the human spirit can be when pressed with imminent disaster.  This sort of thing is going on in Boston right now.  "I only have shrapnel wounds right now." " I only lost my leg." 

We all have the ability to make the best of a bad situation.  It takes time sometimes to move from despair to positive but the ability is there.  

It is raining today but look at the wonderful picture of nighttime raindrops I was able to take last night.   

It's all good.  Not our choice, but it is all good.