It's Not Over 'til it's Over... But now it is - and I'm Glad

You haven't heard from us in a while... and here's why:

(Note: you can pause or replay the music in the player on the right)

The good news is I went back to work...

The bad news is I was working too much too much to blog...

The good news is I'm not working anymore...

The bad news is I need to look for work and not mess around with personal blogging...

- so, this will likely be the last post to this blog for a long time.

Plus, it is kinda over - fortunately.

Today is the one-year anniversary of my double mastectomy. We think.

Larry and I mused over what would be an actual anniversary date - the surgery, the diagnosis, the suspect mammo? The start of chemo - or the end of it? Maybe it's not for another 5 years when the prescribed daily bone-crushing, hormone-blocking medication has had its run? Perhaps it's the finishing touches of breast reconstruction - slap on a coat of paint, hang the curtains and you're done, ma'am!

Yes, the journey started with a routine test and will end with tattoos (lavish ones - if I have my way), but the most iconic moment had to be the removal of the breasts - the banishing of the beast within them. As I write this now, I'm only too aware of this same day one year ago as I was wheeled into the operating room - wondering what and who would I be when I woke up.

I fought for my patient rights, I "handled" each harsh treatment with self-respect and compassion for my body. I returned to life in the working world and community with full force. I did it all with the support and good grace and love of my friends, family and colleagues - and most of all, my fantastic husband, Larry.

Yet, through tears of gratitude and triumph, I am grieving today. I realize, with everything else, I did not allow myself to do that all year. What really marks the days and hours of struggling to accept what had happened? And to not accept what didn't have to happen?
And - to make it through all.

I made it. We made it. Thank you.

I want to close this out with a poem, "Begin Again," by Anna McKenzie that a friend and fellow survivor, Dr. Melissa Johnson read at a recent Wellness Community gathering. She was introduced to this poem while in Ireland last summer on a women's retreat. The Irish friend who shared it said Anna wrote it while in prison in Chile.

Melissa's edited selection speaks best to my experience - plus, I (and I suspect most of you) belong to the CSAS (Church of the Short Attention Span). If you want to read the whole poem - email me - ampiersimoni@me.com and I'll be happy to forward it on. Please help me "Begin Again" by ending this conversation with your thoughts and comments and by being "Glad" (thank you, David Byrne) we got through it!

Love, amp

Begin Again

(Selections from "Begin Again" by Anna McKenzie)

And so we must begin to live again
We of the damaged bodies
And the assaulted minds
Starting from scratch with the rubble of our lives
And picking up the dust of dreams once dreamt.

And as we stand there, naked in our vulnerability
Proud of starting over, fighting back
But full of weak humility
At the awesomeness of the task.

We take our first few steps forward
Into the abyss of the future
We would pray for
Courage to go places for the first time
And just be there
Courage to become what we have not been before
And accept it,
And bravery to look deep
Within our souls to find new ways.

We did not want it easy
But we did not contemplate
That it would be quite this hard,
This long, this lonely.

So if we are to be turned inside out
And upside down

With even our pockets shaken
Just to check what’s rattling
And left behind,
We pray that you will keep faith with us
And we with you

It is Over!

It is Over!

Original Post - Saturday, January 19, 2008

(re-ordered for chronological logic)

It is Over!

AMP had her 4th and final chemo treatment last Thursday!!! We opened up the Champagne, unplugged the M/M and have been partying. We are dismantling the cross of treatment and trying to imagine what it will be like to move forwards.

For the scrabble lovers, you will be pleased to know that those who suffer sometimes are rewarded. AMP decisively beat me in the 4th, but not final game. (I want a rematch.) She was dominant and shrewd. Without a scrabble dictionary to refer to, we had to trust each other and accept not only some questionable words, but also questionable explainations. For example, the turning point in our match occurred when she made the 70 point word benchers. She said a bencher is somebody at an elementary school who benches a kid. And when there is more than one bencher then there are benchers. I didn't feel comfortable challenging her, giving the circumstances. When I was able to consult a dictionary I discovered the following: the word bencher exists, but the definition is a) senior member of an Inn of Court or b)a member of the House of Commons. What should I do? Is this fair? Larry

There were 2 comments to the original post:

2 comments:

Anonymous said...

dear Amp -CONGRATULATIONS.! we are so glad that you are past this procedure. You and Larry been great in sharing and humanizing your experiences. So now its really a Happy New Year! cheers, val and tim

January 20, 2008 11:19 AM

Jamie said...

Okay, if the word benchers is what pulled AMP ahead and clenched her win, I might argue the point. BUT if she was already kicking your butt and benchers was just another in her repertoire... well, then you're out of luck! Congrats on making it through your last chempo session AMP! You're a winner all the way around!
much love ♥ jamie

January 20, 2008 5:22 PM

Benched!

Note: evidence of "medically-imposed" scrabble handicap - an icy eye-covering purported to minimize irritating ocular side effects of chemotherapy drug and cheating.



First of all - in no way did I suggest that a bencher is somebody at an elementary school who benches a kid. Unless the kid is on a sports team.I was referring to a sports term, a verb:
to remove from a game or keep from participating in a game: to be benched because of poor hitting.

I quite logically assumed that one who was removed from a game would be a benchee and one who performed the removal would be a bencher - therefore, if there were a number of people performing this function, such as rabid neighborhood soccer-basketball-baseball-you-name-it parent/coaches, they would be referred to as "benchers."

I do, however, admit to a minor error since I later found (as my husband would have, had he bothered to scroll further down in dictionary.com) - that a bencher is actually the person who sits on the bench - ergo, multiple people (kids, athletes, heck - anyone!) sitting on a bench would be a group of "benchers." An error in definition, but a WORD none-the-less: a word, a noun, a plural.

1. One that sits on a bench.
2. Chiefly British A member of the inner or higher bar who acts as a governor of one of the Inns of Court.
3. One, such as a magistrate, who occupies a bench.

In any case, it should be obvious that "benchers" alone could hardly put me in the outstanding lead I maintained throughout this final session. I won fair and square, the eyes seem to be holding up well and as far as cheating - where there's a will, there's a way:


Hopefully, I am now officially "benched"
from chemotherapy!!

xox
amp

3 down 1 to go

AMP had her third chemo treatment last Thursday. The two weeks leading up to this treatment were difficult due to the exacerabation of her eye allergies that we came to realize after many days of bemoaning allergies worse than cancer, was a nasty, very nasty wishing to cut out one's eyes-side effect of the chemo-therapy for which there is no known ameliorative agent save for the that over utilized and under-acknowledged, multipurpose steroid or morphine if you don't care about performance. Fortunately steroids are prescribed to frame the chemo. AMP not only felt relief from her allergies, but also had the steroidal effect of energy minced with a bit of grandiosity for which there is no pharmacological remedy.

Once again the culinary support was four stars. Thanks to all! It's lovely not to have to shop or cook at critical moments and comforting to feel the love.

I am saddened to report to AMP's fans, that she is no Patriot, and suffered her first cancer scrabble defeat. In spite of the steroids, the grandiosity and the overwhelming support of other cancer patients, their spouses, nurses, and oncologists she lost! The game was decided in the final moment of play as we had to prematurely end the game since the infusion was complete and the nurses wanted to go home. We counted our points, substracted the letters in our hand, and Larry won by two critical points, technically still a victory!

AMP's last chemo treatment is scheduled for January 17. We are looking forward to putting this behind us and holding on to what we have learned and benefitted from.

On the topic of Tupperware

Thank you so much for the generous dinners that you brought to our house. We felt cared for catered to and well-fed. Now we are inundated with all manner of tupperware and casseroles. Please don't be shy about picking up your wares.

Thanksgiving "Run" of Faith

I read this at our Thanksgiving meal, had meant to post it in thanks and appreciation and because it speaks to the element of faith that I feel I needed to take in the decision of my treatment and the way I need to live.

It is an excerpt from "Run" by one of my favorite authors, Ann Patchett (thanks and appreciation to Nick for the book). In this excerpt, an aging Catholic priest grapples with faith, even as he has "mistakenly" been identified as a miraculous healer:

Night after day, Father Sullivan was awake with his thoughts. The visit of the two women and all of the subsequent visitors that followed had shaken him. It made him realize how helpless he was to do anything of substance for anyone. It would be incorrect in every sense to say that so near the end of his life he had lost his faith, when in fact God seemed more abundant to him in the Regini Cleri home than any place he had been before. God was in the folds of his bathrobe, the ache of his knees. God saturated the hallways n the form of a pale electrical light. But now that his heart had become so shiftless and unreliable, now that he should be sensing the afterlife like a sweet scent drifting in from the garden, he had started to wonder if there was in fact no afterlife at all. Look at all these true believers who wanted only to live, look at himself, clinging onto this life like a squirrel scrambling up the icy pitch of a roof. In suggesting that there may be nothing ahead of them, he in no way meant to diminish the future; instead, Father Sullivan hoped to elevate the present to a state of the divine. It seemed from this moment of repose that God may well have been life itself. God may have been the baseball games, the beautiful cigarette he smoked alone after checking to see that the bats had been put back behind the closet door. God could have been the masses in which he told people how best to prepare for the glorious life everlasting, the one they couldn’t see as opposed to the one they were living at that exact moment in the pews of the church hall, washed over in the stained glass light. How wrongheaded it seemed now to think that the thrill of heartbeat and breath were just a stepping stone to something greater. What could be greater than the armchair, the window, the snow? Life itself had been holy. We had been brought forth from nothing to see the face of God and in his life Father Sullivan seen it miraculously for eighty-eight years. Why wouldn’t it stand to reason that this had been the whole of existence and now he would retreat back to the nothingness he had come from in order to let someone else have their turn at the view? This was not the working of disbelief. It would be possible to overlook just about anything if you were trained to constantly strain forward to see the power and the glory that was waiting up ahead. What a shame it would have been to miss God while waiting for him.

p. 131, Chapter 6
Run
Ann Patchett
Harper Collins
New York
2007

Decision To Go Chemo

I wanted to finally explain, as promised - and since many keep asking, the difficult decision to do chemotherapy. I was very borderline as to the need for this and in fact had differing opinions from doctors. One held that the cancer had all been removed, the markers were all very favorable - slow growing, early, etc. and no reason to blast myself with such a harsh sentence. The other held that the characteristics of mine were still unusual - presenting in many locations despite the good markers and therefore unknowable. The idea that the smallest seeds of cancerous cells could be lurking, unfindable was daunting, but plausible since the original "suspect areas" had been tracked for a while before they were deemed malignant. The regimen this doctor recommended seemed slightly less harsh than most and very short and after careful consideration, I decided that I would not live comfortably without trying everything I could to eradicate even the smallest risk. I did not want to make this decision further down the road and did not believe the choice itself would've been very much different.

The oncologist recommending it was the one who had originally halted my initial planned surgery - a simple lumpectomy - in favor of doing more tests, including an MRI, which I had been insisting upon, unheeded by the surgeon. Without that MRI, I might gone forward with continued cancerous growth, more surgeries, more danger, etc. I found that oncologist to be thorough, dedicated, willing to answer my questions and totally on board that the decision was ultimately mine. Having birthed both of my children at home, this major medical intervention did not come easy to me, yet from that experience, I know there are risks involved in every approach. Eventually, I had to place my trust somewhere and decided to do it. And, in the process of coming to this decision, I realized that I am very lucky to even have a decision to make, lucky indeed to even be able to have chemo at a time when there are women in the world who are untreatable, or worse - untreated. I take this risk with an eye and a will to do everything else I can naturally and nutritionally to build back up.
- amp