Living while waiting... An art form

[Andrea Barnett Budin]

THIS IS AN ESSAY E'D TO ME THAT I THOUGHT MANY OF MY SISTERS AND BROTHERS MIGHT BENEFIT FROM READING.

I THINK EACH ONE OF US CAN RELATE, AND HOPEFULLY FEEL INSPIRED TO TAKE THE TIME WE HAVE AND RUN WITH IT, CHERISHING EACH MOMENT AND THOSE WE LOVE...


In 2003 I suffered a grand mal seizure followed by the diagnosis of a
brain tumor. After a 10 hour MRI assisted brain surgery and a year on
anti-seizure medication, life calmed down. In 2006 I was diagnosed
with Non-Hodgkin's Lymphoma and had months of chemotherapy. Now after
two years I am completing Rituxan, a follow up on the earlier
treatment that is intended to extend remission.

Recently I had the final infusion. But I was not at all sure that
pulling away the safety net was a cause for celebration. My doctor
poked his head into the curtained chamber to assure me that he
expected a long remission. Kind of him, but what could he say?

Remission is cancer's suspended animation. The renegade cells are
poised to return but no one knows when. It could be a month or a
decade; for my type of lymphoma (one of the more than thirty varieties
of Non-Hodgkin's lymphoma) there is no cure. So I am stuck in what Dr.
Seuss -- in a book I used to read to my daughter -- calls "a most
useless place. The Waiting place...."

I have been here before; my wife was diagnosed with cancer when she
was 31. Our daughter was ten months old, and we waited. Following my
brain tumor and surgery, we waited. We thought then we were done. No
more bullets in the chamber. We felt safe, but tentative.

A swollen lymph node was the first warning of this new cancer. A
biopsy confirmed our unspoken fear. It seemed incredible, overwhelming
to think it was happening again, happening anew. The doctor called me
at work. I came home to tell my wife and she was in the shower. I
walked in fully dressed and we held each other; our tears combined
with the cascade of water.

I had the strange, surreal experience of hearing my congregants' shock
that this could happen to the family of the Rabbi -- as though
professional piety was a shield against disease. As though God played
favorites.

Right before my brain surgery I appeared in front of the congregation
and asked them for their patience and their prayers. Three year later
I was standing before them, bald. I witnessed the realization in their
eyes that there are no guarantees, no protected people. No one is safe.

At moments, my wife and I will look at each other and understand the
unspoken. We have both been scared, on and off, more and less, for a
long time. And now with the end of treatment we are scared anew and
waiting once more. Well, what now?

Do you live as if remission will go on forever? Or do you allow the
thought of death to be before your eyes always, so as not to waste a
precious moment of life?

Every patient is surrounded by people assuring him "you will be fine."
A woman in my congregation told me, with a sage look, "You are going
to be ok. I know these things." I told her I would feel more
comfortable if she had foreseen the cancer in the first place.
Statistics are meaningless. Neither my wife nor I had risk factors. No
one knows. We've rolled snake-eyes too many times to count on breaking
the bank.

What have I left undone? That marching song of purpose is quickly
undermined by the whisper of nihilism: so what if you've left
something undone? Will the world really be poorer for that article,
that book unwritten? Then I hear my own voice counseling others, love
more, care more, risk more, be more thoughtful.

One afternoon in the middle of chemo, when my hair was gone and most
of my energy with it, my wife was bringing our then 9 year old
daughter home from school. I heard my daughter say as the door opened,
"Is Daddy on the couch again?" Nothing has ever made me sadder than
those words.

There may be stem cell transplant in my future. There may be a new
regimen of drugs. They are always 'in the pipeline' I am told.

For now I am just waiting. I am trying to find my own way through this
because, inevitably, I will be asked how I did it. Rabbis are supposed
to be figures of authority and calm. It was hard enough to reassure my
congregation that a fickle universe does not mean that God is absent.
That belief does not indemnify me against adversity. That my faith
through all this is unshaken. How does one live, Rabbi, is the
question my congregants ask, of not so directly. Tell me, Rabbi -- it
is your job to know.

My answer, I now realize, is: Live as if you are fine, knowing that
you are not. Death is the overriding truth of life but it need not be
its constant companion. My safety net is gone. I feel, as all people
in remission do, that each time I fly my hand may slip from the
trapeze. But to live earthbound is to give the cancer more than it
deserves.

I was never taught that God promises us forever. Each day is graced
with beauty, with the certainty that this world is not all. I am not
owed more years. I do, however, desperately wish for them.

I am grateful for the time I have been given. I am scared it is
running out. And I pray with a new intensity -- not that I will be
promised a cure, but that I won't waste my waiting in fear. I owe it
to my family, my community and to God not to be done before I really
am done.

WITH MY LOVE, AS ALWAYS...

[Lien]

Beautiful words. Can I quote this on another list?

Jacqueline

[Andrea Barnett Budin]

Absolutely! Please do... Spread the wisdom...

We all need some inspiration.

Hugs,

[Believe51]

Andi, thanks for passing this on and you are so right about us all need inspiration. It was nice to come to the board and see that you have spread that infectious smile of yours. I have missed you so much but knew the book writing was keeping you busy. How is that book coming along?? Talk soon Sweetie and I need you to know how happy I was to come across this post.>>Believe51

[Mary Anne in TX]

Hi Andi! How often it seems that I need that reminder to live each day fully. I think the most helpful to me was the reminder that the world won't change if my story doesn't get told or if I don't save the "lost ones" in my life! What a challenge this ol' life really is to keep some sort of balance of caring for and about others and to slow down and touch life ourselves daily.
Thanks for sharing, Andi. Don't be a stranger. You are loved, ma

[BarbM]

Hi Andi,
I haven't posted much, but have learned so much here since I was diagnosed almost 2 yrs ago. You are one of the first people that I was drawn toward. I have missed reading your postings. You have been quite the inspiration for my journey. I hope to see more posts from you.
Love,
Barb

[chicagoetc]

Definitely inspiring...Thanks Andi...

Melanie

[Sheila]

AndiBBBBBBBBBB
So good to see your smiling face when I logged on...thank you for posting this...it really resounded with me today....I needed that!
Dont be a stranger, I miss your wisdom!!

[Andrea Barnett Budin]

WELL, HELLO BACK TO Y'ALL. YOU MAY NOT HEAR FROM ME OFTEN, BUT I THINK OF EACH OF YOU ALL THE TIME.

MARIE! LOOK AT YOUR FINE SELF! AN ACTUAL PICTURE OF *BELIEVE*. WONDERFUL TO SEE YOU! LOVE HOW YOU ALWAYS SHARE YOURSELF WITH THE GANG. SHEILA, YOU AND YOUR BROOD ARE A TRUE DELIGHT TO SET EYES ON. AND MARY ANNE MY OLD FRIEND, THANKS FOR YOUR SWEET PERSPECTIVES AS WELL. BARBARA, I HAD NO IDEA, BUT I DO ALWAYS HOPE MY RAMBLINGS ARE TOUCHING SOMEONE(S)... A SHOUT OUT TO MELANIE! HEY!

A RECENT THING I TYPED OUT -- NOW WOULD BE A GOOD TIME TO SHARE I THINK. NOW THAT I HAVE YOUR ATTENTION...

Time is precious. Priceless. Yet it costs us nothing.

You can do anything you want with it, but you can't own it.

You can spend it, but you can't keep it.

And once you've lost it -- there's no getting it back. It's just -- gone.

So, choose what you do with Time well. Use your power to choose what you will think about all day and what you will focus your energy on carefully. Spend it wisely and prudently.

MARY ANNE, I DO THINK THE WORLD NEEDS TO HEAR EACH OF OUR EXPERIENCES. BUT I HEAR YOU ABOUT NEGLECTING TO FOCUS ON THE MOMENT.

WE ARE A PART OF ONE ANOTHER'S REALITY. WE TOUCH ONE ANOTHER'S LIVES. WE EACH INFLUENCE ONE ANOTHER. LET OTHERS KNOW THEIR AFFECT ON YOU. SEE YOURS ON THEM. EXPRESS YOUR EMPATHY FOR THEIR SITUATION AND THE STRESS THEY ARE UNDER. A SMILE, A KIND WORD CAN CHANGE ANOTHER PERSON'S DAY, AND LIVE WITH THEM LONG AFTER YOU HAVE MOVED ON.

I LOOK WITH MY HEART. I DON'T SEE A STRANGER. I SEE A *THOU*, A SACRED BEING. WE ARE EACH SPECIAL, VULNERABLE, IN NEED OF A HUG.

But I believe we musn't lose sight of the fact that -- how you will feel each moment (as it scurries by and disappears)is an art to cultivate! As you thus choose how joyful you will be, others will feel similarly, as they share Time with you...

I continue to live AS IF. As if my desired destiny is on its way to me. I work hard at not obsessing about it, not demanding it, just BELIEVING I can call it mine. Fear and Faith cannot occupy the same space. So this is how I deal with my fears. I do think we all have them, after all...

I have learned to consciously choose to live moment to moment, hour by hour. Otherwise my head spins as I contemplate the *what ifs*. I choose to ground myself in The Now and drink in the Essence of being alive! Most days. I sometimes fail. Flounder. But I know I will do better, tomorrow...

I live with an open heart. I am a vessel for Universal Love. I know it sounds hokey, but it's how I see the world. I thought you should know this. It is such a wondrous Life Lesson I have gleaned!

I pray you too will find this Enlightenment for yourself, and derive great benefit from it.

I wish you Health and Happiness, Harmony and much love...

Always thinking of you,
Andi

[jones7676]

Wonderful as always.....thanks so much!

[swimangel72]

This was wonderfully inspirational! I really needed to read this today, thanks so much!

[caya]

Thanks Andi for this lovely post. We miss you, please try to pop in with some thoughts once in awhile.

all the best
caya

[Believe51]

You always have our attention. Please do not be a stanger, I miss you. Anyway, thanks for these words from the wise AndiBB, I needed them today. Hope to see you soon.>>Believe51

[tdonnelly]

Hi Andi,

Your thread was just what I needed to hear tonight. I just returned from the hospital. My ex had a quad bypass today. Trying hard to be strong and supportive for our children and him. I too have not been online as I had to move out of state. I am one of the 3+ million out of work, lost her home... Still struggling with my own recooperation from last two years of treatment. Recent checkup was Cancer Free; thank God. I am going to print your post for him as he begins his recovery. Very inspirational. Take Care.

Tamara
Invasive Ductal Carcinoma 10/2006

[Bill]

Hi Andi! Thanks for sharing your awesome posts with us. I'm glad you're doing so well. It's always good to hear from you. love ya! Bill

[Paty]

Andi,

Thank you for touching my life in such a wonderful way. You are a real inspiration to me.

Paty

[Jackie07]

Andi,

So good to see your beautiful smile. And thanks for the
inspirational message - as usual.

Reading your post also helped me to feel less tense worrying about possible liver mets. I've been having discomfort on the right side below/under my ribs. And there are other notable changes in other areas. Reading your signature again helped relieve some of the stress and revive my fighting spirit.

[sally]

Hi Andi, I always liked reading your inspirational words of wisdom. The phrases about time were also on the show called Medium. There is so much truth to those words about time. Something that is so easy to take for granted. Sally

[Mary Anne in TX]

Andi, I totally agree. I just mean that sometimes the things that I think are so important may not be important at all. My life chores may be skewed from what my simple mind thinks should be done and may be something altogether different! One of cancer's gifts has been learning to let go of what I assumed was so! Rather than try to get my point across, I'm loving just being on the learning end of the stick!
It has even seemed in the last few weeks or so that a "few...very few" of my little grey cells are coming back to life!
Keep tuning in please, ma

[SuThorn]

Andi-

I do not post a great deal, but I want you to know that your words are always so inspiring to me.

Thanks for continuing to share.

Suzanne