Last Post also known as really finished

I just read a book called the Other Side of Sadness. One point that it made was this:

People who endeavor to move on and be happy – usually because they feel the deceased would have wanted that – have better lives and outcomes than those who succumb to the idea that grief is a process that must be worked through.

I feel guilty when I am happy even though "Be happy" were the last words in the letter that Tracy wrote to me. I feel guilty when I am sad because that is against the last words in the letter that Tracy wrote to me. It is time to move on. That does not mean I did not love my husband. I did and will continue to love him.
There is nothing wrong with wanting a happy fulfilling life and I am the only one who can give that to me.

Thank you to my dad for suggesting I do this. Thank you to my Texas and Georgia family who faithfully read what I write and email me with letters and thoughts of hope. Thank you to my friends who have stood by me and have not once faltered on whether to continue to be my friend through these past years that only be described as torture to both Tracy and myself. Thanks for putting up with my ups and downs (yes mostly downs). I hope I can be as good of friend back.

Most of all thank you to my most precious children whom without I would not have made it this far. You have put up with a lot, tolerated a lot and your support is felt deeply and appreciated more than you will ever know.

Finished

A good friend said that one day I would find the strength to find a place for grief in your life, but not have grief be your life. For the sake of myself and my family that day has to be today.

I am finished crying. I need to feel amazed, happy, and pursuing a dream.

In all that I do, in wherever I will go, in whatever I will become, I will always love you. For it is you that taught me what love is and it is through that gift that I will live and love again.

more from CS Lewis

Can you not see death as the friend and deliverer? It means stripping off that body which is tormenting you. What are you afraid of? Has this world been so kind to you that you should leave it with regret?

from Camille March 4, 2009

I am thankful for the many talented doctors we had on our team.

Begin forwarded message:

Camille,

Thank you so much for taking the time to send condolences.

I thought that you would like to know that you were the catalyst behind Tracy and I deciding to get married when we did. Your style of bluntness caught us off guard when we first met and we believed that we were wasting time every day that we were not married. On the drive home from Rochester the first day of meeting you we bought rings and were married within a month! We always thanked you in our hearts for being the one who jump started our indecision. It obviously was the best decision I have ever made to marry Tracy. I miss him so much.

We fully appreciated all that you had done for him and always wished that you were closer and we could have some of your wisdom to help us make decisions this past year. I also will never be able to thank you enough for the 5 extra years that you gave me with him.

Thanks again,

Mica


On Mar 4, 2009, at 4:31 PM, Abboud, Camille wrote:

Mica:

I am sorry to hear from Anne McKenna about Tracy’s passing. I share your grief and wish I could have done more to mitigate things. He was always full of life and had a good sense of humor he will be remembered fondly in our hearts. Please accept my sincere condolences.

Camille

Professor of Medicine
Washington University in St Louis
Division of Oncology,Section BMT & Leukemia
660 South Euclid Avenue, Campus Box 8007
St Louis, MO 63110

Tel: 314-454-8323
Fax: 314-454-7551
Camille N Abboud, MD,FACP

it was a mistake and a cheap bandaid for the pain. the point is there is a huge difference between dating and keeping company with someone and clinging to them with every fiber of your being you have left because being alone is just scary right now.


There is no shortcut through grief.

Give me hope
Help me cope, with this heavy load
Trying to, touch and reach you with,
Heart and soul

Drowning

My current home and current town I live in is filled with nothing but memories of my husband that are so constant I sometimes feel like I am drowning.

I have to get out of here.

Being Strong

I am frequently told that I have to "be strong" for my kids. Well I am tired of being strong. Then I had to laugh as I wonder which child of mine would think I have even attempted to be strong since March. I doubt any of them would characterize me as being strong.

I am so thankful for each and every one of my children and the support that they give me in their own way every day.

Cheering up

This was in a handout from the grief class:

Be careful about cheering up too quickly. Be careful about believing that you need to cheer up too quickly. Wanting ourselves and others to feel better is natural, but trying to cheer up too quickly can get in the way of what you need to do, which is to grieve.

I think I tried to cheer up too quickly
or maybe my already crushed and broken heart was not ready to be crushed again.

and now it is like my grief is starting over from day one.

dreams

for the first time since Tracy died, he was in my dreams. It was just an ordinary dream where we were doing ordinary stuff. but I did not want to wake up. Thanks Tracy for coming into my dreams last night.

sadness and weather

I've found that it's of some help to think of one's moods and feelings about the world as being similar to weather:

Here are some obvious things about the weather:

It's real.
You can't change it by wishing it away.
If it's dark and rainy it really is dark and rainy and you can't alter it.
It might be dark and rainy for two weeks in a row.

BUT

It will be sunny one day.
It isn't under one's control as to when the sun comes out, but come out it will.
One day.

It really is the same with one's moods, I think. The wrong approach is to believe that they are illusions. They are real. Depression, anxiety, listlessness - these are as real as the weather - AND EQUALLY NOT UNDER ONE'S CONTROL. Not one's fault.

BUT

They will pass: they really will.

In the same way that one has to accept the weather, so one has to accept how one feels about life sometimes. "Today's a crap day," is a perfectly realistic approach. It's all about finding a kind of mental umbrella. "Hey-ho, it's raining inside: it isn't my fault and there's nothing I can do about it, but sit it out. But the sun may well come out tomorrow and when it does, I shall take full advantage."

by Stephen Fry

my family

We have had such a hard time trying to regroup to the family that we are now. Just the three of us. I want so much to get back to where this house is filled with joy. I thought we could try family game night again. But as it turns out all of our games are for even number of people.

My family is uneven and out of balance. I don't know how to get it back together.

Silence

Two years ago, Hannah, Trevor lived here part time, James lived here - Liz was here often. Wesley was still home. Joshua, William, Tracy and I. I never knew if I were cooking for 9 or 4. The house was chaotic, noisy, but so full of life. The door was constantly opening closing with people coming and going. Now our house is quiet, sad and so full of death. The silence is deafening and I can't stand it.

some days are stone

When you ask how I've been here without you, I like to say I've been fine, and I do.
But we both know the truth is hard to come by. And if I told the truth, that's not quite true.
Some days are diamonds, some days are stone. Some times the hard times won't leave me alone.
Some times the cold winds blow a chill in my bones.
Some days are diamonds, some days are stone.

Now the face that I see in my mirror, more and more is a stranger to me.
More and more I can see there's a danger in becoming what I never thought I'd be.
Some days are diamonds, some days are stone. Some times the hard times won't leave me alone.
Some times the cold winds blow a chill in my bones.
Some days are diamonds, some days are stone.

I just want my old life back.

from CS Lewis

CS Lewis writes:
'Because she is in God's hands.' But if so, she was in God's hands all the time, and I have seen what they did to her here. Do they suddenly become gentler to us the moment we are out of the body? And if so, why? If God's goodness is inconsistent with hurting us, then either God is not good or there is no God: for in the only life we know He hurts us beyond our worst fears and beyond all we can imagine. If it is consistent with hurting us, then He may hurt us after death as unendurably as before it.

This is the part that I will struggle with always....in God's hands. I was told that Tracy was in God's hands while he was in the hospital....and Tracy suffered. Now he is in God's hands again. How can we trust those hands now?

caulking

what is so hard about a caulk gun? why is everything hard with out him. It is a caulk gun and I can't figure it out :( :(. Why does not being able to figure out a caulk gun reduce me to tears.

It is pathetic.

The Greatest Loss

Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.

Please Don't

When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that Tracy is dead, so please don't make it worse by telling me I'm not doing this right.

I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, maybe the joy will slowly return to my life. But I will never forget
and there will always be times that I cry.

Empty

I feel depleted and drained, like an empty vessel, with nothing left to give.

Dean Koontz

Right now it is destroying me.


“Grief can destroy you – or focus you. You can decide a relationship was all for nothing if it had to end in death, and you alone. Or you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn’t allow yourself to consider the sacredness if it. But when it is over and you are alone, you begin to see it wasn’t just a movie and a dinner together, no just watching sunsets together, not just scrubbing a floor or washing dishes together or worrying over a high electric bill. It was everything, it was the why of life, every event and precious moment of it. The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can’t get off your knees for a long time, you’re driven to your knees not by the weight of the loss but by the gratitude of what preceded the loss. And the ache is always there, but one day, not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life.” -- Dean Koontz

Fuck

Fuck the upcoming holidays and being without him.
Fuck losing the one person in the world that understood me, and still liked me.
Fuck trying to stay strong for my kids, I love them and all, but damn, fuck it.
Fuck it that my kids feel they have to stay strong with me.
Fuck having car troubles and knowing nothing about cars.
Fuck every damn song and movie that reminds me that I am ALONE.
Fuck having to even enter this shitty dating world again because I am fucking fucking scared and tired of being alone.
FUCK FUCK FUCK wondering if one person can have 2 soulmates and FUCK FUCK FUCK having to even think that thought because I had my soulmate and GOD FUCKING TOOK HIM FROM ME!
Fuck cleaning my room and having to dust an urn that holds my heart and soul...

from Josh

mom are you dying?
i really am scared
please come save me
please come save me

i still need you. i've always needed you.
hell, it's just us three running the god dam place
i can't even be around. i'm too busy fucking around.


I am not dying. I am just not living.

Sad to say I cannot save you. I am not sure I can save myself.

Sorry Josh. Really I am.

from twf one year ago today

Begin forwarded message:

From: TW French
Date: October 11, 2008 12:06:30 PM EDT
To: Mica Miller French
Subject: guess what!

I still love you Mica Lee Miller French.
You are so beautiful!
twf

My Birthday

Where are you this moment
Only in my dreams
You're missing, but you're always
a heartbeat from me.

I'm lost now without you.
I don't know where you are.
I keep watching,
I keep hoping,
but time keeps us apart.

Is there a way I can find you?
Is there a sign I should know?
Is there a road I could follow,
to bring you back home?

Winter lies before me,
Now you're so far away
In the darkness of my dreaming
The light of you will stay

If I could be close beside you,
If I could be where you are,
If I could reach out and touch you,
And bring you back home.

Too much

I am not only grieving his death, but also the person I was when I was
with him. My whole world has crumbled and I will never be the same.

and it keeps crumbling. the ground upon which I stand is shaky and
has been for too many years. Make it stop.

consoled by religion

Talk to me about the truth of religion and I'll listen gladly. Talk to me about the duty of religion and I'll listen submissively. But don't come talking to me about the consolations of religion or I shall suspect that you don't understand.

- C.S. Lewis, A Grief Observed

actually right now, do not talk to me about religion at all. I don't want to hear that God is with me, that He is with Tracy, that it was His will......right now, let's just leave God out of this.

live forever

What pitiable cant to say, ‘She will live forever in my memory!’ Live? That is exactly what she won’t do - -C.S. Lewis, A Grief Observed

no commentary from me needed.

I'm Trying

You can shed tears that he is gone,
or you can smile because he has lived.
You can close your eyes and pray that he'll come back,
or you can open your eyes and see all he's left.
Your heart can be empty because you can't see him,
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.
You can remember him only that he is gone,
or you can cherish his memory and let it live on.
You can cry and close your mind,
be empty and turn your back.
Or you can do what he'd want:
smile, open your eyes, love and go on.

On the Outside

People think they know you. They think they know how you're handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you're lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don't know what's going on inside your head--the mind-numbing cocktail of anger and sadness and guilt. This isn't their fault. They just don't know. And so they pretend and they say you're doing great when you're really not. And this makes everyone feel better. Everybody but you. "

Digital Version of book

Here is a link to the book I made for my fellow widowers. They will get a hard copy.

http://www.youtube.com/watch?v=V5eUfLJ-g20

Disease

The medical community needs to stop doing stem cell transplants until they can figure out the aftermath. This is from the mother of a 10 year old boy. He had a stem cell transplant, and now has skin GVHD, scleroderma like GVHD, lung GVHD. He had his transplant at 5, and for 5 years he has struggled with one complication after another. His life is his disease.

After another long day at Clinic Monday
getting platelets & IVIG
and having to cancel OT & PT because getting the blood products took so long
that Ryan's therapy times came & went
while he was still hooked up to IVs
Ryan quietly sat at our dinner table after school
with the most down trodden expression on his face.

I asked him what was wrong.
He just shook his head.
Then he whispered, "It just isn't worth it."
He turned his hands over as much as he could to show me
where another huge blood blister had pooled the night before while he slept.
His eyes were vacant and he just looked down.

Life is Hard

Ever since the day
the day you went away
I felt that emptyness
so quite so wide
I don’t know what’s wrong or right
I just know I need strenght tonight
strength to fight that world outside
Since we’ve been out of touch
I haven’t felt that much
From day to barren day
My heart stays locked away
I walk the boulevard
admitting life is hard
without you near me

The sun is sinkin low
I’ guess it’s time to go
I feel a chilly breeze
In place of memories
My dreams are locked and barred
admitting life is hard
without you near me

Do Not Leave me in the Dark

Be with me always. Take any form, drive me mad, only do not leave me in this dark alone where I cannot find you. I cannot live without my life! I cannot die without my soul.


Wuthering Heights.

Less of Me

I'm less than I was
when you knew me,
diminished now
by the loss of you.

Insides hollowed out,
scraped raw for a time
now scarred and numb,
emptiness filling the void
like a leaden stone.

Heart crushed painfully
somehow continues to beat,
spirit once buoyant
as a birthday balloon
now shriveled and useless.

There is no trust
that life will fill my glass
once more to overflowing,
Shakespeare's "Tomorrow
and tomorrow and tomorrow"
suddenly takes on
personal meaning.

he girl who once delighted
in flirtatious tete-a-tetes
is no longer the Innocent
blindly grasping
at delicious hope
against all odds.

The girl has become Woman
privy at last to a myriad
of Life's cruel jokes,
tripped unexpectedly,
shockingly by
Fate's outstretched foot
along the path
that I only imagined
I knew like the back of my hand.

Eileen Auger

Stress

It was honestly too much of a day. I should not have tried to do both bankers and lawyers in one day as it left my head spinning. Too many choices, decisions, and a great need to have this part behind me. It is overwhelming. I can not think logically through of all of the different options, revising my will, beneficiaries, guardianships, small cap, large cap, various fees, risk comfort level and the tax considerations for it all etc. At one point we were discussing the different living trust options irrevocable and revocable. My thought was lets do irrevocable so I can just go home and let someone else take this over. James also did not like the oppenheimer people so he wants to schedule a meeting with the ML WM (and I do not know what that means even) for in 2 weeks in NYC.

I can not handle even the smallest amount of stress anymore.

Happy Birthday Tracy.

A Prayer

Let me do my work each day; and if the darkened hours of despair overcome me, may I not forget the strength that comforted me in the desolation of other times.

May I still remember the bright hours that found me walking over the silent hills of my childhood, or dreaming on the margin of a quiet river, when a light glowed within me, and I promised my early God to have courage amid the tempests of the changing years.

Spare me from bitterness and from the sharp passions of unguarded moments. May I not forget that poverty and riches are of the spirit.
Though the world knows me not, may my thoughts and actions be such as shall keep me friendly with myself.

Lift up my eyes from the earth, and let me not forget the uses of the stars.  Forbid that I should judge others lest I condemn myself.
Let me not follow the clamor of the world, but walk calmly in my path.

Give me a few friends who will love me for what I am; and keep ever burning before my vagrant steps the kindly light of hope.

And though age and infirmity overtake me, and I come not within sight of the castle of my dreams, teach me still to be thankful for life, and for time's olden memories that are good and sweet; and may the evening's twilight find me gentle still.

--Max Ehrmann (1872-1945)

The Hospital

I remember this moment clearly. Tracy was still on the trach vent and unable to speak. He would sleep a good bit of the day. During one of those days I remember staring out the window at my car and watching the snow. I had not left the hospital in several days at that point and the car was almost completely covered in snow. The snowplows had come many times and because of that there was a foot of snow surrounding the car. Except for the sound of the vent everything was extremely quiet. I started crying thinking of what all Tracy was going through. I wasn't not wailing crying at that time (although that happened plenty) but just silent tears watching the snow. Tracy woke up at some point during that time and started banging on something so I would turn around. He had written something on his paper that he wanted me to read. It said "Stop being so hard on yourself".

But I could not then and I can not now. I should have let him die in December. He suffered even more than he had to because of decisions I made. I am so sorry Tracy.

More on Mr. Zeigler

It was also interesting to hear him talk of how his whole philosophy on life has changed. He is shaking his fist at the God that he once thought he understood, going to yoga, meditation, doing acupuncture, studying reincarnation....anything and everything to make sense of what does not make sense. Trying to make sense of suffering without a cause. Trying to alleviate a pain that does not go away. Not wanting to accept that perhaps this life is all there is and that is not enough.

After the Group

I sometimes wonder if I had died first if Tracy would spend his days wearing my pink robe, clutching onto the clothing I died in, refusing to wash it and crying all over it. The man in the grief group answered me today that although he does not wear his wife's clothes that he does bury his face in her clothing crying hoping to catch a small scent of what she smelled like. Frequently on the way home the women in the group can be seen pulled over or unable to even leave the parking lot because of crying and not fit to drive. Today on the way home I saw the man in the group pulled over crying. I am sorry Mr. Zeigler that you are sad today.

The Worst Thing

My painter said he could not imagine anything worse than a spouse dying. Actually the worst thing is that they stay dead.

Contradictions

I want a diversion from this hell I find myself living in.
I want a reason to laugh, to say at the end of the day "this was a good day".

I want to find comfort and wallow in this hell I find myself living in.
I want to look at old pictures, notes, letters and cry all day.

everything

Everything is so hard.

The grocery store. Every aisle is a glaring reminder. Strawberries...he loved them. Cereal aisle...Frosted Mini Wheats - we still have the box from when he was among the living.

Reminding myself that I do not have to check the calorie content on everything and choose the higher calorie item. Ham on sandwiches. Folgers coffee. Not so crazy about off-brand anything (and he could tell). He liked certain pickles. He preferred butter over margarine. Sharp cheese. Fruit on the bottom yogurt. Frozen vegetables over canned. Klondike bars.

When will I be able to just go to the grocery store and get through it without crying or trying really hard to not cry. It is a huge effort to not just leave. I have to push myself to just keep breathing, keep walking, keep going, don't bolt. The boys want food in the house.

When are things not going to hurt so much?

Little Notes

It is the small things.

Yesterday when hunting for birth certificates to apply for passports, I ran across a forgotten stack of notes. These are notes written on the back of receipts, scraps from an envelope, torn off sections of paper. They do not look important.

One says "Hi Mica Lee Let's do something together tonight - even if it is a just a drive and dinner. I love you, Tracy".

Another says "I love you with everything I have" then a picture of a heart with an arrow through it and "see you tonight".

The last says "are you up for a ride in the z tonight with the top down?"

The answer is Yes Tracy I would give anything to go for a ride with the top down with you.

I would give anything to tell you about my day (it was spent crying all day and missing you desperately). I would give anything to hear about yours...yes I know that you are ashes in my closet and around my neck.

Please just come home. We can try again. We can do it better.

Courage

Courage does not always have to be a roar, sometimes it is a little voice that says 'I will try again tomorrow'.

I will try again tomorrow to get out of bed and care about anything.

The Fight

I feel like that I spent so much energy fighting for Tracy's life that now I have none left to try to fight through without him.

I am so tired.

Grief is...

Grief is an inventory of what has been lost.

my best friend
my encourager
the one who made me smile
the one who knew all of me and loved me anyway
the breadwinner
my confidant
my shoulder to cry on
arms that comfort
my heart and soul
my cheerleader
my strength

What Not to Say

Do not say this:

He is no longer suffering.

Suffer he did. Especially the past few months of his life every step was difficult. Every movement took all that he had to do. He went from this time last year to being able to fairly well do things, he could do most things on the boat, he did things in the yard and then 6 months later he was on oxygen a good deal of the time and taking a shower was a major event. Then the next 6 months a slow, miserable death. Every day more taken away from him.

It is just not fair that not only did he have to endure such misery and pain, but for that, for all of his suffering, he died anyway. If he had survived, it would have almost made sense - passage through fire and all that. But if he had to die, why did he have to suffer - what was the point if the outcome was his death? So yes he is no longer suffering, but why suffer in the first place?

The Boat

Today Trevor and I went to the capri and made some headway. It was just the two of us, so gave us time to talk. He has been having a hard time as well and today was hard. We both wished so much that Tracy was here not only because we miss him more than words can say, but because we were the crew and apparently not the most attentive crew. The last grief group the facilitator said that one thing that helped was to approach tasks or events with the thought that you would do the task or event in a way that would honor our loved one. We want to think that Tracy would be proud of us. I think he would have been today. We figured stuff out. The boat is really clean and I know he would like that. Trevor and I had a chance to talk. Not just about Tracy but life itself.

This was a hard day, a bittersweet day but a good day with Trevor and I missing his dad together and working on the boat in such a way that Tracy would have been happy.

I can not express how much I miss Tracy.

Memories

Tracy and I had lots of good times. We had lots of times that were special....even the mundane day to day activities were fun with him. So why is that the only thing I can remember is the last 30 minutes of his life and that repeats in my head over and over all day long.

I am sorry Tracy for how much you suffered.

Strength

When I got a divorce, I felt free and strong. I was pleased when I accomplished tasks because I had something to prove to Paul. He made me feel small, weak, unworthy and not capable. So when I left I felt very confident. I was not who Paul said I was.

Tracy thought I was beautiful, smart, funny, amazing. Without him I do not feel like I am any of those things. I have lost all confidence. I am realizing all of the things that are required to maintain a house and a car, I really do not know how to do. I know the concept behind checking the oil, but I really have no idea what lines I should be looking between. According to what I see, we do not own a car that has any oil in it. I do not feel comfortable hiring a painter. I do not feel comfortable hiring a plumber. I feel small again. I am not who Tracy said I was.

It's everything

The million losses....

He won't see this spring. He won't enjoy watching the plants make their way back from being covered in snow. He won't ask if I want to go for a ride with the top down. He won't be here for summer. We are not planning our vacation that we got to be alone for a week. He won't hear his favorite Bob Dylan songs or here the new Bob Dylan songs. He won't see Wesley get married, Josh graduate from high school, Hannah and Wesley graduate from college. He won't know if Trevor found his way. He won't be here to watch William perform again. All of the years he saved for retirement and he did not get to spend a dime of the money.

And I have to face all of those things without him.

Grief is...

Grief is throwing your hands up into the air and collapsing onto the floor into despair.

Today started off okay. The weather is perfect. The sun is shining, it is a warm 80 degrees. I had planned on working in the yard and that was going well. Then out of nowhere it hits me. Bob Dylan playing on my iPod Catch the Wind. The nice warm breeze...Tracy would be getting the boat ready for the water if it were not already in the water. And the tears flow and can not stop.

I hate my life.

In the chilly hours and minutes of uncertainty,
I want to be in the warm heart of your loving mind.
To feel you all around me,
And to take your hand along the sand,
Ah, but I may as well try and catch the wind.

Standing in your heart
Is where i want to be i long to be
Where i'm bound to be,
I'm but, I'm ears, we'll try and catch the wind

When sundown pales the sky,
I want to hide a while behind your smile,
And everywhere I look your eyes I find.
For me to love you now, would be the sweetest thing,
T'would make me sing,
Ah, but I may as well try and catch the wind.

When rain has hung the leaves with tears,
I want you near, to kill my fears,
To help me to leave all my blues behind.
Standing in your heart is where I want to be
And long to be,
Ah, but I may as well try and catch the wind.

Ah, but I may as well try and catch the wind.

Grieving Persons Rights

Avoid people who are critical or who try to steal your grief from you. They may tell you "time heals all wounds" or "you will get over it" or "keep your chin up."

While these comments may be well-intended, you do not have to accept them. Find those people who encourage you to be yourself and acknowledge your feelings -- both happy and sad. You have a right to express your grief; no one has the right to take it away.

After the Group

I cried all of the way home. I had to pull over twice on the way home because I could not see past my tears. I was sad and angry when I got home. Sad for myself, for my loss, but also sad for everyone else there who was choking back tears, or for those who were not even trying to choke back tears. Angry at life because of how many people are suffering tonight over death.

One person, the only man in the group, told a story of how his first wife was killed by a drunk driver. He waited many years to re-marry but did so at age 75. Two weeks before he got married they found out that his soon to be wife had breast cancer that had metastasized. She lived for 4 years and died two days after Tracy died. He is now 80. He actually had heard of Tracy as he is a semi-retired professor at Cornell. He said that what he hated most was being told that it would get better. He said he did not want it to get better. Yes. That is exactly how I feel. I do not want to be 'over' Tracy.

Tonight for the first time since Tracy died I was hungry. I ate dinner because I wanted to eat and not because I know that at least every few days I must do so. The group was a relief. A place to go to nod in agreement to what others had to say and to have others nod in agreement to what I had to say. A place where that everyone knew that sometimes what is best is just a simple touch on a shoulder and no words said because there are no words available to say. A sad, overwhelming, exhausting day, but a relief nevertheless.

Bereavement Group Assignment #1

What are your personal goals for the group?

I want a place to go that I can express myself without having to defend how I feel. I want a place where that others will understand how I feel.

Most people do not understand. They want me to be a certain way, to feel a certain way on a time frame that they believe to be reasonable.

I want to be able to say I laid around in bed all day and not have someone say you should not do that, you should stay busy, you should not think about it. I want someone to understand that some days all I want to do is to think about Tracy.

SongBird by Fleetwood Mac

For you, there will be no more crying,
For you, the sun will be shining,
And I feel that when I'm with you,
Its alright, I know its right

To you, Ill give the world
To you, Ill never be cold
cause I feel that when I'm with you,
Its alright, I know its right.

And the songbirds are singing,
Like they know the score,
And I love you, I love you, I love you,
Like never before.

And I wish you all the love in the world,
But most of all, I wish it from myself.

And the songbirds keep singing,
Like they know the score,
And I love you, I love you, I love you,
Like never before, like never before.

The things that I carry

Grief is turning ordinary objects-a hairbrush, a note, a pin- into Sacred vestiges. - author unknown.

I carry his wallet in my purse.
His cell phone is in my purse.
I carry a note that he wrote me in my wallet. It says "don't forget the shirts at the cleaners - oh and i love you more all the time"


I sleep holding a sock hat that he wore all of the time because his hair never grew back quite right and he was always cold.

I also sleep in his t-shirts.

His laptop has become a sacred thing off limits to anyone but me. I do not use it, except to read things. That is where he left a letter he wrote me. It has a video of him playing the guitar. And conversations from when we first met as well as emails from the 'early days'. Those things could be imported to my computer and the computer put to good use by one of the children, but it won't be.

His toothbrush is still next to mine.

I wear his bathrobe (sometimes all day).

Saving Grace

A friend and colleague of Tracy's sent me a nice card that said the following: "Tracy was so happy with you and your boys. I remember how he could not stop smiling when he was about to drive south to see you. How elated he was at the prospect of you moving to Ithaca. You two should have had many more years together. Everyone could see that you were his love, his life, his strength, his saving grace, his hero. You gave him a reason to continue his battle as long as he could, you gave him hope, you gave him the desire to breathe. Your love sustained him as long as humanly possible."

I guess because most people knew of Tracy's problems, his health, etc that I was viewed as some sort of saving grace to him. My dad had cancer when I was a little girl so I grew up with cancer. It never was all that scary because my dad was fine. Especially when Tracy said he had non hodgkins lymphoma...well my dad had hodgkins lymphoma so I just assumed he would be okay. It did not occur to me that I would have the word cancer decide love.

When Tracy and I first 're-met' online I was contemplating divorce with Paul. Actually I had contemplated it for a long time. I was going to ask him for a divorce right before I got pregnant with William and I looked at William being a sign from God that I should stay. As it turned out, William was a gift from God, but not a sign from God.

Tracy was also having problems with his marriage and he and I would give each other tips on how to improve things from the male or female point of view. I would tell him things that I thought would help with Rita from a woman's point of view and he would do the same for me. We were very good friends for a long time and I never in my wildest imagination thought it would go anywhere beyond talking about each other's marriage on the internet. Eventually I told him that Paul was a big drinker and not a fun drinker at that. Paul was abusive mainly mentally but sometimes physically as well.

It was because of Tracy that I got a divorce. Not because I thought I would be with Tracy, but because Tracy believed and convinced me that I was not the person that Paul thought I was. For years, Paul told me over and over how worthless I was, that he drank because of me, that no one else would ever want me because I was flawed. After hearing it daily for so long, one begins to believe it. Tracy said I made him a better person. Tracy said any man would be lucky to have me. Tracy made me believe that I was strong enough to do what I had to do to save myself.

Tracy is the hero, my saving grace. But he had it all wrong on how strong I am :(.

Grief is...

Grief is saying screw you for leaving me. - Author unknown.

Yes Tracy, Screw you. You promised me. You promised that you would not give up until I had given up. Well, guess what I still had hope. I had hope that the Cleveland Clinic could give some answers. It was only one week away. ONE WEEK. So screw you.

Thanks for leaving me so much to deal with. The mortgage. We had talked about that and how hard it would be for me to get a mortgage on my own, because I do not have a job. I did not have a job because I was taking care of you. I have to go in tomorrow to try and get the mortgage with the silly I don't have a job thing over my head. To convince them that yes although I am an unemployed crying middle aged mess I deserve a mortgage. I probably can not even write my name through the tears but yet I have to convince them I am responsible enough to handle a 100k loan. I do not to this day understand why Rita did not want me on the mortgage and why you cared so much that she said I should not be on it. The entire estate could have been handled better had she had not had so much involvement in the beginning of our marriage. Tomorrow my day is filled with bankers and lawyers. So thanks a lot.

The front porch is rotting. We talked about that. Yes I know that Rita met her boyfriend that ultimately destroyed your marriage with her and your sense of self worth when you hired him to fix the porch at the house you shared with Rita...well guess what...I am not Rita. I just wanted the fucking porch fixed. I did not want anyone to fall through it. That was it. I LOVE YOU. I WANT YOU. Brad Pitt could have repaired the porch, and I still would have loved and wanted you. The porch was not the reason that Rita had the affair. So thanks a lot for leaving me to deal with that. I do not have the energy to make the phone calls to wait for the repair men to never show and then to trust that I am not being taken advantage of.

Lastly, but most important of all, I need help with Josh. You said you wanted to help. You were better at handling him than I am. He needs help and I can not do this alone. He is falling apart. I have fallen apart. I can not do one part of this, so certainly I can not do all of this.

I do not want to be alone again.

You promised me. Screw you.

What is Grief?

Grief is feeling guilty because we did not stop death, could not revert death, and cannot change death. - author unknown.

Tracy left me notes before he went to work. One of the last notes before he went on disability said "You keep me going".

Did he know that I was losing hope? Did he know that I was not sure that we would make it to the Cleveland Clinic? Or that if we did make it that the doctors would take one look at how sick he was and say there was no way he would be put on the list? Did he not want to go back to the hospital because he did not want to or did he know that I did not want him to be there? That I could not take another day with the staff at Cayuga Med. Did he not want to go the long term nursing care because he did not want to go or because he knew that I did not want him there? Did he give up because he felt like I was giving up? Did I stop "keeping him going"?

Loss

It is not the one big loss, it is the million little losses that one must face each day. Tracy will never ride with the top down, he will never be excited to put his boat in the water, see the first signs of spring. I will never be able to do those things with him. Every day, every minute I am faced with another little loss. Those endless losses are the hardest to face.

Not just someone

I want someone to care about what I did today, to feel a loving touch, to have someone care if I am going to be late, or to tell me to not hit a deer. But that can't be just anyone, I want it to be my husband. I want it to be Tracy.

Dimes

I read that a sign from the deceased could come in the form of dimes. I found a dime today!!! While I was doing laundry, a dime appeared on the floor by the dryer. Imagine that.

Safe and Sound

There's beauty in release
There's no one left to please but you and me
I don't blame you for quitting
I know you really tried
If only you could hang on through the night
I don't want to be lonely
I don't want to be scared

A Bereaved Person's Wish List

Author unknown

1. I wish my husband hadn't died. I wish I had him back.

2. I wish you wouldn't be afraid to speak my husband's name.
My husband lived and was very important to me. I need to
hear that he was important to you also.

3. If I cry and get emotional when you talk about my husband
I wish you knew that it isn't because you have hurt me. My
husbands death is the cause of my tears. You have talked
about my husband, and you have allowed me to share my
grief. I thank you for both.

4. I wish you would not remove my husband pictures,
artwork, or other remembrances from you home.

5. Being a bereaved person is not contagious, so I wish you
wouldn't shy away from me. I need you now more than ever.

6. I need diversions, so I want to hear about you, but, I also
want you to hear about me. I might be sad and I might cry,
but I wish you would let me talk about my husband, my
favorite topic of the day.

7. I know that you think of and pray for me often. I also know
that my husband's death pains you, too. I wish you would
let me know these things through a phone call, a card or
note, or a real big hug.

8. I wish you wouldn't expect my grief to be over in six
months. These first months are traumatic for me, but I wish
you could understand that my grief will never be over.

9. I wish you wouldn't expect me "not to think about it" or
"be happy." Neither will happen for a very long time, so
don't frustrate yourself.

10. I don't want a "pity party," but I do wish you would let me
grieve. I must hurt before I heal.

11. I wish you understood how my life has been shattered. I
know it is miserable for you to be around me when I'm
feeling miserable. Please be patient with me as I am with you.

12. I wish you knew that all grief reactions I'm having are very
normal. Depression, anger, hopelessness and overwhelming
sadness are all to be expected. So please excuse me when
I'm quiet and withdrawn or irritable and cranky.

13. Your advice to "take one day at a time" is excellent advice.
However, a day is too much and too fast for me right now. I
wish you could understand that I'm doing good to handle an
hour at a time.

14. Please excuse me if I seem rude, certainly not my intent.
Sometimes the world around me goes too fast and I need to
get off. When I walk away, I wish you would let me find a
quiet place to spend time alone.

15. I wish very much you could understand - understand my
loss and my grief, my silence and my tears, my void and my
pain. But I pray daily that you will never understand.

People keep saying I have to take care of myself, that Tracy would have wanted that. I know that Tracy would not want me sick, but I think he would want to be with me. Why does anyone think that they might know better than me what Tracy may or may not have wanted.

Then 'they' say God ended his suffering and I should be thankful. I am thankful. But that also means that God started my suffering. Not so thankful for that.

I think one can die of a broken heart. If you don't think that, then you have never lost a spouse. If the person that you lived for, the person that completed you, the person that loved you despite knowing everything about you, the person that made you feel alive dies, what makes people think it's a good thing for you to go on living.

I am also told I have so much of my life ahead of me. I have none of my life ahead of me. My life as I knew it, is gone forever. It feels like pure punishment for a sin that I can not understand. What could I have ever done that was so bad to deserve to feel completely loved, to have my 'happy ending' and then have that ripped away. It feels like I knew that happiness and love could exist for a moment in time, but the pain will last for eternity.

I have heard from other widows that in a year the pain will not be so unbearable. In two years, you won't cry every day or better yet, the second year is harder than the first. I hear that the ratio of good to bad days gets better. Someone four years out says the hole in your heart never heals completely. All of this is supposed to be a comfort. So that is what I have in my future a better ratio of good and bad days. I have yet to hear a widow say that you will feel love again, you will be happy again. Just it won't hurt quite the same way. I hear the 'seasoned widows' as they are apparently called have learned to cope with the pain and the loneliness.

So I have to keep going so I can feel emptiness and loneliness that stretches on and on and on.

Love someone like you would the day after they died.

Life marches on and drags me with it

Is this Crazy?

I want to go to a John Edward show. Or a guy in New York city who holds a seance every Thursday night not far from where James works. I am going to order a necklace that you can put some of the ashes in. The one I like is tear dropped shaped and silver. I think I will wait until the necklace comes in before I go to either John Edwards or the seance guy - who has a PHD btw :). If he has a PHD he has to be okay :). It seems like if I had the ashes around my heart that would bring Tracy to us.

I just want to know that he is okay. I want him to know that I am not. I told Tracy a long time ago that if I were at a John Edward Show that he should come talk to me, he said he would except that John Edward was a liar and a fraud. If Tracy talked to me it would probably be just to say to stop spending money like this :).

Grief Share Help for the Journey

Not going to do those anymore. The theme is the same. God is with me, He will help me, He will answer my prayer for comfort. Why is He going to start all that now? What makes that prayer today any different than the fact I have prayed that during Tracy's illness. I want better answers, better solutions.

If one more person says what does not kill us makes us stronger, I will punch them. Why do I need to be so strong? Am I about to have to pull a car off of a baby?

Easter

So it is Easter. A time to rejoice.

I am glad that Tracy was not religious. Today would have been difficult. Today was not harder than any other day is. All days are hard.

Today though is a time that I find myself reflecting on what I believe as far as heaven, hell, God and Jesus. I want to believe that Tracy is safe in heaven. That he is okay, that one day I will be with him again. But when I think about it, really think about it, well it makes for a good story, but is it a believable story? When Tracy was in ICU and we had to decide about the vent and then it was a difficult placement of the vent and even the doctors were surprised that he made it, my prayer at that time, was not that God's will be done, but MY will. I wanted him alive. I did want him well. And he was alive for awhile, he did not get well.

I wish I understood God, heaven and hell.

I wish I had the faith that God will somehow make it all better, when so far my prayers have gone largely unheard. If they are being heard, they are not being answered.

The Service

by Wesley Sanders

The Lord is near to the brokenhearted
and saves the crushed in spirit
Here and now, dear friends, we are God's children
A life we love has been torn from us
The mystery of death has stricken us
O God, you know the lives we live and the deaths we die-
woven so strangely of purpose and of chance
of strength and of frailty, of happiness and of pain.
Behold our tears, and bind up the wounds of our hearts
Through the mystery of pain,
bring us into closer communion with you and with one another
Raise us from death into life.

Friends, we have gathered here together to celebrate the life of Tracy
We come together in grief, acknowledging our human loss
May God grant us grace, that in pain we may find comfort
in sorrow, hope, in death, resurrection.

HYMN Be Still My Soul #534

Psalm 23
The Lord is my shepherd
I shall not want
He makes me to lie down in green pastures
He leads me beside still waters.
he restores my soul:
he leads me in the paths of righteousness
for his name's sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil:
for thou art with me,
thy rod and thy staff they comfort me.
Thou prepares a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life:
and I will dwell in the house of the Lord for ever.

God of us all, your love never ends
When all else fails, you still are God.
We pray to you for one another in our need
and for all, anywhere, who mourn with us this day
To those who doubt, give light
to those who are weak, strength
to those who sorrow, peace
Keep true in us, the love with which we hold one another
In all our ways we trust you
All to you, with your Church on earth and in heaven, we offer honor and glory
now and forever, amen.

EULOGY

Matthew 8:23-25 As he got into the boat, his disciples followed him. And a great storm developed on the sea so that the waves began to swamp the boat. But he was asleep. So they came and woke him up saying, “Lord, save us! We are about to die!” But he said to them, “Why are you cowardly, you people of little faith?” Then he got up and rebuked the winds and the sea, and it was dead calm.

Part of why I chose this Scripture is because Tracy had such a love for sailing. This passage is often called "jesus calms the storm", although I'm not sure tracy always wanted the seas calm. I remember one year when we went to the beach with my extended family and tracy joined us, he and my mom had their own adventure on the wild seas: a metal pin broke and the sail came down while they were out on his Hobie boat. They eventually made it safe and although it was a scary experience for all of us I think Tracy probably enjoyed the adventure to some degree. But he worked hard to make sure my mom was safe while trying to get to shore. He and my mom were so happy together. There was no way you could spend time with the two of them without seeing that love that they share. Tracy was devoted to his family and I know it was a very hard choice for him to uproot my brothers, mom, and I and move us here to New York. But he worked hard to make this our new home. And we flourished here in what could have been a very difficult adjustment because tracy worked hard to make us a home here in Freeville. He loved his family and in spite of the sometimes immense stress of his disease, he gave so much of himself to my mom, to his children, and to me and my brothers.

His love that he left us will carry on and will help calm the storm that has cast itself over us right now.

My mom wanted me to read this as a reminder that tracy's journey has taken him sailing to a new lake, his legacy and love are still here.

"A Parable of Immortality" by Henry van Dyke.

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a speck of white cloud
just where the sun and sky come down to mingle with each other.

Then someone at my side says, 'There she goes!
Gone where? Gone from my sight - that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.

And just at the moment when someone at my side says,
'There she goes! ' ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
'Here she comes!'

Tracy's last year was very hard for him in many ways, but I know one of the most difficult was that he couldn't sail. I know he's out on that new lake in the kingdom of God now, sailing once again. Will you pray with me? Almighty God, just as you calmed the seas with your disciples, calm the seas that rock our lives this day. Help us to have the assurance that Tracy is now in your kingdom, sailing with you. God, give us comfort, hope, and peace in this time of trial. Amen. If you could join me in singing hymn #344, Lord, You have Come to the Lake Shore

HYMN #344 Lord, You Have Come to the Lakeshore

WITNESS
Gary Napier
Trevor French
Alan French
Tracy Stokol

HYMN #377 It Is Well or Precious Lord Take my hand

DISMISSAL WITH BLESSING
The peace of God which passes all understanding
keep your hearts and minds in the knowledge and love of God.
As we offer Tracy back into your arms,
comfort us in our loneliness,
strengthen us in our weakness,
and give us the courage to face the future unafraid.
Draw those of us who remain in this life closer to one another,
make us faithful to serve one another,
and give us to know your peace and joy.
May the blessing of God Almighty
the Father, Son, and Holy Spirit
Be among you and remain with you always. Amen.

Guilt

I honestly thought that we would make it to the Cleveland Clinic. I did not think he was going to die until it was too late to do anything about it. How could I have not known? He had been in ICU for 45 days for his radiation therapy scarring to his lungs complicated by pneumonia then complicated by everything else. He had a tracheostomy because of the same scarring to his trachea was making it impossible for him to be taken off of the ventilator. He had a feeding tube because weight loss was going to make it so that he was not a candidate for the transplant. His children and I made the decision to save his life and treat the pneumonia. We decided on the vent, the trachea, the feeding tube. We thought he had a chance. Then he finally comes home from the hospital and two weeks later is dead.

The guilt that I feel is overwhelming. I wish I had brought him back to the hospital on the day that he died. Maybe we could have kept fighting. Maybe he would have been all right.

Or did we do too much. Just prolong his life for purely selfish reasons. Made his last three months of life totally miserable.

Plus his last two weeks at home where not as they should have been. I was tired, he was tired, we both were cranky.

I want a re-do. But I do not know what I would re-do. I just want this over with. But I am not even sure what that means.

Grief Runs Deep: Where is the Hope Day 4

Dr. Joseph Stowell says, "Even though your heart is breaking and tears are clouding your eyes and staining your cheeks, God does give us something worth trusting in tough times. And that's Him, and Him alone."

When your heart is breaking, you can place your hope and trust in the Lord.

"Be strong and take heart, all you who hope in the LORD" (Psalm 31:24).

Anne Graham Lotz defines hope: "Biblical hope is absolute confidence in something you haven't seen or received yet, but you're absolutely confident that whatever God has said is going to come to pass."

She also declares that "Jesus is your hope for the future. One day Jesus Christ will come back, and He will set all of the wrong right. Good will triumph over the bad. Love will triumph over hate. Righteousness will triumph over evil. He's going to make it all right, and you can have absolute confidence that that's going to take place. That's your hope."

Sovereign God, I choose hope. I choose faith. I choose life. Give me an unshakable faith in You. Amen.


But I chose hope and life for my husband. I prayed for life for Tracy. God did not make it all right.

Grief Share Help for the Journey Day 3

When you feel weak

In the Bible

Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief. Psalm 31:9

1. What areas of your life does grief affect?


There is not an area in my life that grief does not affect. It affects my sleeping, my waking, my children, my health. There is not an escape from grief.

2. In this Psalm, where did David (the author) go for help when he felt weak?
He went to God.

In your life

1. How is grief affecting you physically and emotionally?
I have lost weight. I have no energy. I have no motivation for doing anything - showering, laundry, etc. I am consumed with thinking about Tracy and nothing else.

2. How is grief affecting your relationships with others? I do not have an attention span, I can not concentrate on what others are saying. So I ignore my children, I do not answer the phone and would prefer to be left alone. I am in my room upstairs, William in the office downstairs, and Joshua in the basement. Three floors to a house and we all use one of them. I feel bad for my children. My friends want to meet me for lunch every Tuesday. So far I have gone, but I do not feel like doing that.

One month on April 3

The one month anniversary of the death I was going to try hard to do something other than laying around in my husband's clothes.

Try to focus on something positive about this day (the one month anniversary of when my heart was ripped from my very soul). It was a beautiful day. I did get my husband's midlife crisis BMW convertible out of hibernation for the winter and put the top down. I thought my husband (he in my heart) and I could take a ride. Turned on the radio and what was playing.....SongBird by Fleetwood Mac. He played that on his guitar and sang for me on our wedding night. Okay I can still do this. It can still be a good day.

We had chinese for dinner and they gave us 4 fortune cookies instead of 3. That really hurt also as if the random chinese place knew that we were missing a person. That's fine though, I can still do this.

We 'gave' the extra to my husband and put it in his spot. When we read it it said "you are now a peaceful man". Okay still working on doing this and the day will be over soon.

Before my husband died we got these cards for Christmas that are called table topics. The website describes it as 'intriguing, funny, enlightening, thought provoking questions to help make connections with teens, friends, family". I am sure if you have teenagers you can almost hear the groans that accompany me bringing out the cards produce :). But I thought it was fun. We had not taken the cards out since my husband died. The question that was randomly selected was "is there only one soul mate for each person" That was it. I resign.

Do you ever feel like that God is just messing with you?

It seems like staying in bed in my husband's clothes all day works better.

Grief Share Help for the Journey Day 2

Comfort for your grief
In the Bible

Blessed are those who mourn, for they will be comforted. Matthew 5:4

1. What kind of blessing do you think will come to the person who honestly mourns?

I do not think there is a blessing behind mourning. It hurts.

2. How can a person in mourning be comforted?
Just let me talk, let me cry.
Let me be sad.

In your life

1. Are you allowing yourself to grieve? Why or why not?
All I do is grieve. I have no energy or desire for anything else.

2. Since the death of your loved one, what have you found comfort in?
I have found comfort in going through old pictures, emails, notes and letter. I have found comfort in sleeping in his tshirts and holding his sock hat.

Knowing Tracy and being his wife gave me my happiest time of my life and also my saddest.

Grief Share Help for the Journey Day 1

Why do I hurt so much?

In the Bible

For I am about to fall, and my pain is ever with me. Psalm 38:17

1. Describe your pain. My body physically hurts. My skin hurts, my head hurts. I am tired. My mind is numb.

2. At what times does your pain feel the deepest? first thing in the morning before I am awake and I have forgot what has happened. Then it hits me in the face. I have to start another day without him.

In your life

1. The author of the above Bible verse is honestly expressing his emotions to God. Whom have you shared your emotions with? Katie, Sue, Peggy and James

Re-living March 3

The afternoon that Tracy was dying at first it was just Hannah and I at home. Tracy had sort of been in and out of it all day. He was sort of talking to Hannah and I, but we would ask him a question and it would take a long time for him to reply. It was like he would start to think about his answer and then lose track of what we said. We would ask if he were hungry, and he would start to answer (which I am sure would have been no he was not) then he would stop talking and stare off into space. When we would ask again he would finally answer. I was not sure he knew who we were even. When I asked if he knew where Hannah was though he would smile and say she is right here and act like I was the one who was losing it. When I asked if he knew who I was he would really smile and say " I was his beautiful wife". Just as a side note, he would say that all of the time. I do not feel like I am beautiful and Paul certainly did not think I was, but Tracy would say it several times a day and act like he meant it.

Let me digress a bit....the previous two days, I was noticing that it was harder to keep his O2 sats up on 2 liters. I raised it to 3 liters and it was holding okay, but I had to constantly check it and adjust for it. I think it was actually CO2 buildup. And possibly a new infection. Also his urine output seemed to be getting less and he was sleeping more. I would try things like more fluids, more feeding tube things, adjust meds for certain times a day to see if that would help him sleep better at night and less during the day. I would also get highly annoyed when he would use the plastic urinal and not the toilet. I did not mind that if we were in the bedroom, but not the living room. If I had known we were that close to the end he could have peed on the floor for all I would have cared. I was still deeply in denial and wanted the man back who would not dream of using a urinal period. The night before what was to be his last night he asked for me take off all of my clothes and lay next to him so he could feel my skin on his. I think he knew it was to be the last time. I think I did too.

At around 6 I had to go pick William up from a play rehearsal and Joshua up from getting stoned with friends. Hannah stayed at the house and said his O2 sats had stabalized and he was talking some. When we got home, he seemed to know who William was and asked how the rehearsal went and asked him to play a song. He was not sure who Joshua was but said that he looked like he was a really nice boy. Hannah and I were starting to get really scared at that time.

Joshua fixed dinner and Tracy had a bite or two. Then around 8 Tracy really was not talked much at all or responding anymore than a hand squeeze or a smile. He said hi to Joshua again but it was more like Hi to you boy who I have no idea why you are here. I told Joshua to call Dr. Law and Hannah to call Trevor and her mother. Joshua said that Dr. Law said we had two choices to call 911 where they would take him to the hospital and put him back on the vent or to wait it out. Dr. Law told Joshua that the night could go either way. Tracy was clear on his vent wishes. Rita and Trevor came over. Tracy looked at me, smiled and then said fuck (what would be his last word. Not exactly poetic, but Hannah, Trevor and I like it that was his last word). He grabbed me really tight and held on for awhile. I believe at that time his brain stopped functioning. After awhile he got really heavy and was not able to support a sitting position and Trevor helped me lay him down on the sofa. Everyone at that point said something to Tracy. They loved him was the basic thought. All through this time Hannah was either on the floor next to the sofa or in the bathroom throwing up. Joshua called James and Wesley. William was having a hard time deciding if he were going to be upstairs or downstairs with us but ultimately decided to be down with us. I was glad about that. He started to say something to Tracy but just ended up squeezing his shoulder. Somethings can not be put into words.

Wesley apparently called our minister who arrived at the house at about 11 45. I am quite pissed that Wesley called him and will always resent the minister for coming. He interrupted a very personal family moment. He moved Trevor out of the way who was standing behind me ( I was sitting on the sofa next to Tracy). So this minister, who I did not care for before this had his hand on my shoulder when I could have used Trevor behind me. He should not have been there, but no one knew how to tell him to leave. I am sure Wesley thought it was a good decision and I do not resent Wesley but one day I need to tell him that when he is a minister to ask if he is needed and not just show up. James called me at midnight. I gave James a play by play. James said it was very erie at the time but was glad he was with me in some way or another. I had read and some asshole doctor in the hospital said that sometimes the dying are waiting on the living to tell them that they (the survivors) will be okay. I did not tell him I would be okay because I believe Tracy would have known I was lying. . I told him that he had done a good job, that he had fought a good fight and that I loved him. All the while the minister had his hand on my shoulder and I wanted to punch him. I was still on the phone with James sometimes giving updates or sometimes he was just listening to what was being said. Tracy just basically took fewer and fewer breaths. He did not appear to be in distress. Every minute or so he would sort of gasp for air. You could see a vein on his neck really pounding. And then it stopped pounding and he took no more breaths. That was 12 05 am on March 3. It was not dramatic. Up until this point I was not crying. I was terrifyed. I was annoyed at the preacher. I was so glad that Trevor, Hannah and Rita were at the house. I was glad that Joshua (who was starting to show signs of insanity by now) and William were there. Joshua was suddenly EXTREMELY hyper. Everyone else was sullen. Joshua was offering everyone a cigarette. (but telling them they had to smoke outside as I did not allow smoking inside). Trevor and Hannah took him up on the offer and the three of them went outside.

Rita made the call to the funeral home. The rest of us (including the preacher whom I at this point hate) stayed at Tracy's side. Tracy was not a religious man - he was more spiritual or actually too lazy to go to church on Sunday morning :), so even he would not have wanted the preacher there. I was just holding Tracy's hand now sort of paralyzed.

I was holding it together more or less until the funeral home director home came. He came inside introduced himself like we would be expecting anyone else at 12 30 in the morning. Then he made small talk which I found highly annoying. Who cared about the weather? My husband was dead on the sofa. Then his wife came in with the stretcher and a bag that zipped up. That was it for me. I called James back and went outside and was hysterical. I had a hearse in my driveway. My husband was about to be zipped up in a bag and taken to some cold room. My life would never be the same. James was crying on the phone as well saying it was not fair and that he was so sorry. I ended up in the garage because I knew that I could not take watching them put Tracy in the hearse. At this point I was crying/screaming on the phone to James to make this stop. To not let this be happening. James was crying also. I just wanted everyone (especially the preacher) to leave. Wesley arrived from Binghamton around this time. I stayed in the garage until the hearse pulled out which took forever. Apparently the funeral director waited inside for awhile for me to sign some papers. No one knew where I was so he had to go home. I did not know that and was glad that I did not go back in and sign anything. How bizarre are the rules. I doubt at that point I could have written my name. I eventually went back in and tried to find a room that I could be alone. No room was safe, not even the bathroom because Hannah kept needing to throw up. By 3 am everyone besides Wesley, William and Joshua had left.

Tracy and I both have our own laptops. I have been pouring over his computer and came across a picture that he had taken of himself dated 12/1/08 and a letter to me. The letter was incredibly sweet and oh so very sad. I am sure his intention was to not send me into a deep depression that I am not sure how I will get out of, but that is what has happened. In the picture he looks very sad and very sick. But I like it better than the ones when he was younger. In the picture you can see that he was tired. That he had given up. In the letter he said he did not want to die, he did not want to leave me, but that was what was happening. I still though can not stop thinking of what i should have done differently. Not only this past year, but the last few hours.

This day has been horrible. The whole weekend actually. Joshua is threatening to quit school because he can not get caught up and I am in no shape to help either emotionally and certainly not with chemistry. William is holding our family together and what a mess he will be in a few years. How does life get so messed up? My body actually is hurting right now. My skin hurts. It hurts where my clothes hit or the part that touches the bed or furniture. My legs feel so heavy it hurts to walk. Not to mention that my heart aches (and I have palpitations that border on panic attacks). Grief is painful in more ways than one. Every day is worse than one before.

I miss you honey.

Do not know how to do this

A little background...I was divorced with four boys when I married my "happy ending" husband. My ex was an abusive alcoholic, my husband thought I was beautiful, strong and wonderful. He said it enough that I almost believed it myself. He was a supportive caring stepdad to my boys and never hesitated to help them with whatever they might need. One of my sons is 17. He had the most trouble with my ex husband and the strongest bond with Tracy. The day of the funeral my son had what is now called grief-induced psychosis. We spent the evening after the funeral at the ER with my son who was over the top with energy, feelings, and oddly enough rap lyrics.

Anyway, my son was in the psych ward at the hospital for 7 days falling apart and then getting back together. He was at home for a few days after before he returned to school. So all in all he missed 2 weeks of school. Tonight he said that the stent in the hospital ruined his life, that he would never get caught up with school and he had no one to help him. Honors chem and trig would have been Tracy's department.

The fact that he said he had no one to help him hit home in a BIG way. I am of no use to him or anyone else at this point. I do not have the strength or energy to pick myself up once again to rebuild a life. I have thought a few times when driving somewhere of pulling in front of a semi. The only thing that stops me is how the driver of the semi might feel. I spent the last few hours holding my husband's ashes with my iPod full blast listening to 'our songs' crying hysterically. My sons have no life and they certainly do not have a mother who is any good for them. Every day is harder than the day before.

Every day I wake up look at the clock and calculate how many minutes I will have to be awake. Then sleep will not come. So I calculate how long before the day begins. And I start over. My entire body literally hurts. My skin hurts where the clothes hit. It hurts to walk, to sit, to lay. Doing even the smallest of tasks takes every bit of energy I have.

I just do not know how to do this.

Stop all the Clocks by WH Auden

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He is Dead.
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong.

The stars are not wanted now; put out every one,
Pack up the moon and dismantle the sun,
Pour away the ocean and sweep up the woods;
For nothing now can ever come to any good.

from Trevor

As I look back now, it seems that part of my dad was lost about 10 months ago when he stopped being able to do many of the things we loved to do together. Hannah said recently that she was almost in tears the last time we all went sailing together because it was so hard to see Dad on that boat, but not able to handle anything like he could in the past, no longer the master we remembered. In good health he could singlehand that boat with his eyes closed, the tiller tied off while he hopped around at the bow changing sails, all in a howling 20-knot breeze.
But even though he couldn’t always be out and active in these last few months, it was still great to tell him stories when I went to visit. He would listen intently to everything I told him however mundane it was. He was always eager to hear what I learned or did that day and was genuinely interested in the details of straw bale building even though at first he thought it seemed like a hair brained idea.
He was a good listener, which I guess comes with being a good teacher. And he was a great teacher, a teacher of understanding. He was as generous with his knowledge and he was with his possessions. Just as likely to answer a tough question as he was to toss you the keys to his car. Which was whenever you asked. And now, only four days after he is gone, the questions are piling up with no one to answer them.
Hannah and I were sometimes hesitant to ask him questions about our homework. He would never let us get away with a simple answer, he wanted to make sure we understood the answer even if it meant a 30 minute response to a true or false question that led to the conclusion that either answer was correct depending on how you looked at it. And this started when I was in 1st grade!
He taught me many things and among them were how to drive and how to live, a key tenet to both is that there is more than just going fast-although he did love to do that. There are corners to negotiate and we must always look at things from the perspective of others on the road as well as our own. Oh yeah, and please don’t tailgate!
He also assured us that we were capable of accomplishing anything and was very encouraging in most of our endeavors. When he taught both Hannah and me to sail, he didn’t waste any time learning first from a book, we got right out there. I found a picture yesterday of him taking me on the Hobie Cat when I was 3 years old, on a windy day in January on the Atlantic Ocean! Mom, I can’t believe you let him do that. So, by the time Hannah and I were ten years old, he decided it was time to experience our first solo sail, whether we thought we were ready or not. Hannah says she was actually crying as he pushed the boat away from shore. It seemed that like that day, he was always confident of our abilities even when we were not.
One of my favorite memories is of sitting with him in lawn chairs in his garage debating on politics, speculating about the fate of the world and planning how we were going to rewire those backup lights on my car. He would listen to me rant about the latest crazy philosophy that I had come across even if he totally disagreed and he was always willing to clear out the garage and his evening to pull my car in and try our best to fix whatever was wrong.
My mom and I were remembering one of his favorite expressions; “I can’t miss the best sailing day of the year.” I can still picture him saying this while looking out at the trees swaying in the breeze in our backyard. Those days always seemed to occur when the yard really needed to be mowed or there were piles of leaves to be raked. There were always at least 20 “best sailing days” each year.
Sometimes these conflicts over sailing or chores, sharing the road with an unskilled driver, or Hannah’s behavior would get him worked up, but on average he had the natural temperament of a Taoist; “He acts without expectation, teaches by quiet example, and accomplishes without taking credit. Because he constantly forgets himself, he is never forgotten”. He was brilliant though he would never admit it and caring though he sometimes didn’t know how to show it.
It was this unassuming, modest approach to life that resulted in his being surrounded by love. He was so lucky to have Mica by his side throughout the last twelve years of his life. And even when he was weak and hopes of recovery were low, he had the brightness of her companionship. So to say that his suffering was relieved earlier this week does not tell the story for he did not suffer as long as she was there with him. Thank you Mica for being so good to him and for being the best stepmom anyone could hope for. We’ll miss you always Dad.

Blue Song by Tennessee Williams

I am tired.
I am tired of speech and of action.

If you should meet me upon the
street do not question me for
I can tell you only my name
and the name of the town I was
born in–but that is enough.

It does not matter whether tomorrow
arrives anymore.

If there is
only this night and after it is
morning it will not matter now.
I am tired.

I am tired of speech
and of action. In the heart of me
you will find a tiny handful of
dust.

Take it and blow it out
upon the wind. Let the wind have
it and it will find its way home.

"A Parable of Immortality" by Henry van Dyke.

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a speck of white cloud
just where the sun and sky come down to mingle with each other.

Then someone at my side says, 'There she goes!
Gone where? Gone from my sight - that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.

And just at the moment when someone at my side says,
'There she goes! ' ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
'Here she comes!'

Lovely Cruise by Jimmy Buffett

Drink it up, this one's for you
It's been a lovely cruise
I'm sorry it's ending, oh it's sad, but it's true
Honey, it's been a lovely cruise

These moments we're left with
May you always remember
These moments are shared by few
There's wind in our hair and there's water in our shoes
Honey, it's been a lovely cruise

Ohhh, these moments we're left with
May you always remember
These moments are shared by few
And those harbor lights, lord, they're coming into view
We'll bid our farewells much too soon
So drink it up, this one's for you
Honey, it's been a lovely cruise
Yeah baby, it's been a lovely cruise
Oh darlin', it's been a lovely cruise

Obituary

Dr. Tracy Warren French passed away at home, surrounded by family, on Tuesday March 3rd after an extended battle with cancer. He was 57.

Tracy was born in Indianapolis, IN. He graduated from Indiana University in 1973 with a BA in Biological Sciences. In 1977 he graduated from Purdue University of Veterinary Medicine with a DVM degree.

After residency training in clinical pathology at the University of Florida he joined the faculty at Cornell College of Veterinary Medicine in 1982. For the past 26 years he has been a respected Associate Professor and the Director of the Clinical Pathology Laboratory.

Second only to his love for his family was his passion for sailing. He enjoyed many windy days on Cayuga Lake and many not-so windy ones at home playing his guitar, tinkering with his cars and spending time with his loved ones.

He is survived by his wife, Mica French, two children Trevor and Hannah, their mother Rita, four step-children James, Wesley, Joshua, and William Sanders, his parents, Robert and Elda French, and his brother Alan French (Karen).

A Memorial service will be held Friday March 6th at 3 pm at the Freeville United Methodist Church, 37 Main St, Freeville with Wesley Sanders officiating.

In lieu of flowers, memorials in celebration of Tracy's life may be made to James P. Wilmot Cancer Center 601 Elmwood Ave Rochester, NY 14642.

On March 3, 2009 I watched my husband take his last breath.

Baby do you know what you did today,
Baby do you know what you took away,
You took the blue out of the sky,
My whole life changed when you said goodbye,
And I keep crying, crying.

I wish I never saw the sunshine,
I wish I never saw the sunshine,
And if I never saw the sunshine baby,
Then maybe I wouldn't mind the rain.

Every day is just like the day before,
All alone a million miles from shore,
All of my dreams I dreamed with you,
Now they will die and never come true,
An I keep crying, crying.

March 2

This morning things were going okay. He was doing some of the breathing exercises and seemed a little more alert. He also now weighs 111 pounds. Then unbeknownst to me he took about 40 mg of oxycontin. He is prescribed 5 mg every 6 hours. I had pretty much taken it away for this very reason, but he found it. It is amazing how well he can get around when he is on a mission. I do not think he intends to take extra but he forgets if he took one or not, so takes another. Also he chews them when they are not supposed to be chewed. This afternoon he is largely unresponsive. So I am pretty sure the unresponsiveness is related to the oxy and not solely the CO2 retention. I am sure that some of it is CO2.

I do not know exactly what to do even. He has made it clear that he does not want to go back to the hospital. I do not blame him. There is not much they can do beyond the ventilator which just prolongs life and does not fix anything. Plus if he is hooked to a ventilator then we do not go to Cleveland.

He was doing the breathing exercises earlier at least. And walked around enough to find the oxy. This amount of oxy is not enough to hurt him. It just does not make it where he does much or is very coherent.

Going down

Dr. Law must have ESP and I do not know what I would do without him. He calls from home to check on us - truly a caring doctor. I told him basically what I told Alan and he was able to access today's blood work online. The CRP and white blood count are both up indicated inflammation of some kind. It could be bacterial or a virus. He called in a heavy duty antibiotic and it has been picked up and started on tonight. The good news is that both the red blood count and the albium both continue to rise. The albium is a general sign of over all wellness. A low albium is a bad prognostic sign and when Tracy first went into the hospital his was extremely low. Today it was very close to normal. The red blood count also had been quite low in the hospital and it also is up. I still do not like where we are at the moment. I still am scared. But my heart is not quite as heavy now that we have a plan on board. Dr. Law said to expect improvement in a day or two with this antibiotic. I hope Tracy can keep his spirits up and be able to fight for another chance.

Not doing so great

Tracy is not doing so great. I think he is glad to be home. I certainly am glad to be home. But physically he is doing poorly and in turn it is hard to remain positive. The appointment at Cleveland Clinic is March 9th. I hope that goes smoothly and he can get on the transplant list ASAP. At this point however I am not sure how we will ever make it there. Tracy is not able to get around much and he still does not eat enough to maintain weight so is very weak. I think it has become a vicious cycle as he will never get stronger if he is unable or unwilling to try and exercise a bit or eat something. I do not see how I will get him to the car much less to Cleveland. Maybe something will change in the next couple of weeks. He is also worried about going on long term disability although that is the least of my worries at this point. The LTD is set to start about the same time we go to Cleveland.

Tonight

...has not been especially great. Night is really hard. Tracy really does need to be on a vent at night, because of CO2 build-up but that means long-term care facility and no Cleveland Clinic. He is disoriented and not very nice. Luckily not very strong either so his threats are idle as far as I am concerned. Today though he said again that he thought he was dying and this time I should not try anything heroic. I asked if he thought he should be in the hospital and he responded with an adamant no. I do not want to be there either. He is not eating or doing the breathing exercises that would reduce CO2 build-up. Exercise is not top on his list either. This is so incredibly hard. Regardless, I am glad to be home. Two of the nurses that liked us and live near us stopped by last night which was nice. They said they thought Tracy looked better and for us to not expect too much too soon. So maybe I am just reading too much into everything.

We are Home

We are home with lots of supplies, machines and instructions. I am scared that I will not do a good job but so glad to be out of that place. Dr. Law referred to it today as the "Tower of Doom". I want not only for Tracy to be well, whole and happy but to also take great immature joy in saying I told you so to the naysayers at Cayuga Med.

Home Sweet Home!!!!!

not going home

I am not sure exactly why the vent needed is not approved for home use. I did not even know that the FDA had to approve vents for home use. But, there is not a company that will supply one that we need for home use. The machine that they use here at the hospital is first of all not insurance covered, not approved for home use and a cadillac model of vents....several thousand dollars. So it is not like I could buy one privately and figure it out myself :). There are CPAP machines for home use, but just not ones that go with a cuffed trach. They can not take the trach out or go with an uncuffed trach nor can they use a mask type CPAP because the air would just blow out the trach and never reach the lungs.

Tracy has said that he will not go to a long term care facility...that he is finished if that is what the rest of his life looks like. I do not blame him, I would not want a future of hospital living for the rest of my life either - it would be like prison.

adam said this morning he was seeing what else he can do or other options that might be available. He was even somber this morning as we got this far and now very slim chance of ever coming home or having a quality life. For reasons that neither Adam or I understand it is possible the type of trach that Tracy needs now will disqualify for him lung transplant even though having a new lung would make it so that he does not need this type of trach. He probably will always need a trach due to the radiation therapy damage to his neck area. But he could then have an uncuffed trach and not a cuffed trach which apparently makes a huge difference to lung transplant people.

How is he doing?

I really do not know how to answer that anymore. I sometimes see improvement, but lately I wonder what I have done with my decisions. His breathing is still very labored so I am beginning to think that Dr. O'Mara was wrong that he would see some improvement in quality of life with just the tracheostomy. The peg tube placement went fine, so Tracy will get calories even if he does not feel like eating. It has been 40 days and so far we have just seemed to make things worse for Tracy without much reason beyond a lung transplant to be better. From what I have read, it is likely that Tracy will not be accepted for the program until he gains about 20 pounds and that is the least of our worries. His history of CLL and also the ankylosing spondylitis may make him not eligible either. I think the diagnosis of Graft vs Host disease might hinder his chances also. I think one of the reasons the doctors at Strong have been dragging their feet on him getting on the transplant list is that they do not think he will be able to get on the list. It could be four weeks before we even know if they will consider him for evaluation for transplant. Then there is a lot of testing that has to be done that would take several more weeks. So at best we do not know if he is a candidate for another 6 weeks. Then it could be months before there is a match.

Tracy is also going to have to really work to get better. I do not know how much work he is wanting to do. So far it does not seem like much. He is still very weak, but laying in bed is not going to help that. I really can not tell if he does not want to be better or if he is still just sick. I don't want to do tough love and start sleeping at home if he really needs someone up here.

Apparently his white blood count went way up yesterday and that is a good indication that the infection is not any better. That will also keep him off of a transplant list. He has lots of confusion during the night making sleeping impossible for us both. The confusion could either be drug related or infection related.

We both have said that we would not want extraordinary life saving measures if there was no hope for quality of life. I wonder if I went too far.

:(

we are back in ICU :(.

And yes you oh so very nice nurse Linda, I am crying again today. That was nice of you to point out in disgust to your fellow nurses. Why does it bother you so? Have you lost all compassion? I have been here nearly 24 hours a day for 35 days trying to help and love my husband. Do you not think I see how sick he is? Do you not know how scared I am? Do you think after what I hear you nurses say (and you do not really bother to say it behind my back) that I trust to leave him in your care for a second? I do not want to be back in ICU with people like you to care for him. That makes me sad that I have to. It makes me sad that my husband is suffering. When I am sad, I cry. So sorry.

Day 35

Tracy has a new infection of at this point unknown origin. He is very weak, tired and does not have an appetite. He is on multiple drugs to help his appetite none of which seem to be working. I have been told by Dr. Law to make him walk even if just a few feet several times a day. I am trying, but apparently my powers or persuasion are not as strong as his weakness.

The antibiotic is prescribed to run until 2/8. It is our desire that we leave the hospital on that date and handle things as needed at home.

I need prayers for this antibiotic to kick in, for his appetite to improve and for us both to have the stamina required to get over this illness.

Mica

One Month and One day

The PT guy comes in the morning. He does a few leg exercises then takes Tracy out on his walker. Tracy gets anxiety out in the hallway and they bring him back. When he gets really anxious he has to pee and he only has seconds to take care of that. I am almost ready to suggest depends or something. But I doubt that would go over well. Then Tracy says it would be easier if it were just me and him doing the walk and I say I am ready when you are ready and we sit and wait all day until he is never ready for the walk. By 6 pm yesterday I was quite frustrated as it was clear once again that we were not doing the walk and left the hospital until I realized I had nowhere to go! The nutritionist has come also. Tracy I think knows what he has to do and I am not sure what the hold up is. I think a lot of it is mental. Since about 6 months ago he really lost his confidence in a lot of things. Well actually most everything.

He has been up all night unable to breathe and now he wants a klonopin which is anti anxiety. If he gets one now he will be asleep until 5 pm so I hope he does not get one.

Employee Discount

The nurse tonight is horrible. The bad thing about being changed out of ICU is the nurse to patient ratio is noticeably different. She messed up the sleeping meds they are supposed to be given once at around 10 then again at around 3 am to keep him asleep all night. She gave them all at once which caused Tracy to really zonk deeply out and his blood pressure to drop 70 over something. She did the nebulizer treatment and forgot to hook the oxygen back up so his O2 sats dipped down in the 80s rather quickly. So one minute all was well the next his blood pressure and oxygen were dropping and we could not get Tracy to wake up. The nurses aide was the one who saw that the oxygen was not hooked up and checked about the meds. So I am thankful for the one with the less education. His O2 is back up and the aide is checking the pressure every 30 minutes and she thinks as the sleeping meds wears off the pressure will go up, his heart rate is fine. Then when my heart settled back down, I noticed that his tube feeding was coming back out of his nose. The rate was set way off. And backing back up.

I wish I could see the future. There is slow progress or sometimes I think I am making up the progress. It is sad that I am hoping we can get back to where we were at before this began which was really at a bad place. I do not know which doctor to believe. Certainly I like Dr. Law and I think he is smart. He has been right about Tracy pulling through, but he has no pull at Cleveland Clinic (which is where our insurance will pay 100 percent) and is having a hard time getting through to anyone. He honestly says that there is not a chance that Tracy would be put on a list now because he is too sick. Even though it could take up to a year to find a lung, he is too sick now for one. Dr. O'Mara believes that Tracy can get much better without a lung transplant with just the trach. I need to talk to him more but he is hard to catch. He does not have a practice. He is only an ICU doctor part time. But i would like to get a name from him. We do not have enough doctors :). Dr. Doom thinks Tracy should be dead.

Even if we do not need full time home health care our life will be hard when we get home. The feeding tube will need to stay in place for awhile because wasting is a disqualification for a lung. That takes maintenance and certainly Tracy can not go anywhere with it. The trach will need maintenance. Joshua will actually have to be trained also. There needs to be two people in the household if possible to learn how. I guess if the other person in the house were Nancy they would not do that. Tracy is so weak, so frail, so tired. HIs life is still very precarious and I think that if he crashes again I would let him go. The two mistakes made by the nurse tonight if not caught would have been almost enough to set him way back again to deciding between life and death. So I wish I could see the future. I hope this was all worth it to him.

Off topic...not that I really have a topic...but I get an employee discount at the coffee shop now.