Friday, January 14, 2011

t minus 4

my mind is a hurly-burly snarl today but somehow, through the tumult, only two thoughts emerge. the same two thoughts over and over and over and over again. the first pulled consciously from a text by Pema Chodron.

Fear is a natural reaction to moving closer to the truth.

it is appropriate that my chest does not expand normally, that i can feel the tightness thrumming along and through my jugular veins. this does not mean that something bad will happen. it merely means that truth is coming. my 'job' is to remain open for truth to come in and, if necessary, to lean into the sharp point so we may move forward in our journey.

today is the day...

this is what i have been hearing since i woke this morning. it started as a murmur, a fragment. at first it seemed ominous. you know - "today is The Day." as the hours have crawled and slithered past, however, i have been hearing more and more of what is being called to me.

today is the day that the Lord has made.

as the words grew louder, my mind bucked against them. how vapid. inane. unhelpful. after all, every day is a day the Lord has made. today is not particularly different in that regard. stupid. my mind has just gotten stupid with anxiety.

it took another hour or so for my Ego to shut up, for the madding din to part and reveal what was hidden.

today is the day that the Lord has made. let us rejoice and be glad in it.

it is not quite as written in Psalm 118:24, but this is what i am being Told. it seems absurd, almost offensive, to hear at first while the demons batter the gate but this is, in fact, the Truth.

no matter what we learn, no matter what happens from here forward, today is a Gift.

Andrew and i are madly in love and together. we are carried in the hearts of untold legions of friends and family. we continue to receive Divine succor as we tread on the path before us through the valley back into the light.

this does not mean it is not scary. it is, in fact, more than terrifying but the Truth has already come, and It will see us through. and so, though i cry while i type, i enjoin you to join me in celebration for

Today is the day that the Lord has made. Let us rejoice and be glad in it!

Update: the news is in!

Saturday, January 01, 2011

it is a new year

and that means it is time to start weeding.

Don't plant your bad days, they will grow into weeks and months and before you know you have a bad year.
-Tom Waits

it would be a colossal understatement to say that 2010 did not go as i hoped or envisioned. when i sat in quiet reflection on the crisp, first day of 2010, i saw a year of sparkle and potential. i certainly could not foresee the incredible burdensome challenges that lay ahead. i was newly in love with a wonderful man, and i felt the recent string of sorrowful years was to be punctuated with one of joy and centering and growth. a year i felt i could live as E.B. White described.

I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult.
-E. B. White

the end of winter was quite hard. Andrew was working third shift while continuing his search for a decent job. although we continued backpacking with the Highlanders, opportunities were lean due to Andrew's work schedule and intermittent severe pain and lameness from synovial entrapment in my 'worse' ankle. each day presented increasing challenges of basic humanness.

The average, healthy, well-adjusted adult gets up at seven-thirty in the morning feeling just plain terrible.
- Jean Kerr

as we moved into spring, Andrew managed to find a job glancingly connected to his educational training but for which he was highly overqualified - inspecting and packaging parts for a Japanese automotive supply company. as is unfortunately true for more and more Americans, Andrew was hired through a temp agency for 'temporary', long-term, part-time work with no benefits and no true legal protection or worker rights.

the transition back to first shift work should have brought sparkle into our lives, as we returned to the trail and to swing dancing. for whatever reason, though, it seemed that life just got harder. Andrew spiked a couple of serious fevers and generally seemed consumed with ennui. at the time, we thought it was just a difficult transition back to daytime work and difficulty pleasing his insular and Anglophobic employers.

Andrew continued his endless search for an appropriate job. we revisited our diet, our priorities and our environment. we talked often about the importance of attitude in living a full and happy life.

Our life is what our thoughts make it.
-Marcus Aurelius

we pushed through fatigue to enjoy hikes with friends. struggled to continue dancing. planned a remarkable trip with my parents to Glacier National Forest.

as summer began, we spent almost a week apart for the first time since we started dating. we enjoyed missing each other, and Andrew arranged a special treat for our return Saturday night - root beer floats after a lovely dinner. after floats, Andrew took off his shirt to show me a torn muscle that had 'popped up' while i was gone. in that instant, our entire world changed.

it felt as though i had been struck.

everything within me stopped, replaced by an echoing pronouncement of doom.

Andrew has Cancer.

... but, of course, Andrew did not know that yet. i tried to stay calm (i failed miserably), to figure out the best and most efficient way to get to the truth.

Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.
- Marie Curie

within 36 hours of my return, we were at the internist. less than 24 hours later we had a diagnosis: Hodgkins Lymphoma.

thus began our grueling trip through the medical and insurance machines.

after the first week, we took a small break to travel to Glacier National Park with my parents. the oncologist assured us it would not compromise Andrew's response to treatment, and it was generally agreed that this week might provide a crucial leg-up in morale for the long journey ahead. i do not think anyone realized exactly how much that week would matter. we could not foresee all the coming sorrows and little losses...

after promising to work with him during his treatment, Andrew's employer promptly fired him because 'his contract was completed'. this was illegal and a violation of the ADA, but it is hard to enforce (at best) when a temp agency is used for hiring. we could have done the investigatory work necessary to consider litigation, but only at the expense of energy to fight for Andrew's life directly. instead we focused on the healing.

Andrew's white count plummeted to a dizzying low. low enough that all aspects of daily living became dangerous. fresh fruits and vegetables, plants, the outdoors, and humankind all sprouted ominous and threatening shadows. at first, we thought this would be a temporary phase.

whoever finds love beneath hurt and grief disappears into emptiness with a thousand new disguises.

we deepened our connection reading aloud to one another and playing cards. we planned future hikes and continued Andrew's job search. the months spanned one into another as summer then fall slipped away outside our window. each week brought worsening chemo complications and deeper isolation, in spite of the loving thoughts and actions of our friends and family. there is just so much connection possible when everything is a danger, even less so because my workload increased to inhumane levels.

In the noisy confusion of life, keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.
-Max Ehrmann, Desiderata

as winter dawns again, we clung more and more to inner truths and focused on little pleasures and the impending completion of chemo.

Every story has an end. But in life, every end is just a new beginning.
-Uptown Girls

well, as you know, the end of chemo is not the end of our path to Cancer-Free. since i last wrote, though, a lot has happened. Andrew got quite unwell Thursday - he was horribly swamped with pain from a chemo complication - and we feared we would not make it to Nashville for the New Year after all.

the oncologist fit us in late morning and was thankfully able to provide a solution to the pain. the oncologist also informed us that, although it is quite likely that the wee spot in the chest is still cancer, it cannot be guaranteed. because radiation is not without risks and complications of its own, the oncologist would like to make sure it really is the best next step. he is going to consult with a cardiovascular thoracic surgeon to determine whether the node (nestled as it is near the heart and great vessels) can be safely biopsied using mediastinoscopy. if so, we anticipate scheduling this for the last week in January with additional treatment to follow thereafter.

we headed out to Nashville Thursday afternoon with mixed feelings - heavy hearts due to our new world of uncertainty but very happy we would soon be among family and beneath the light of a very special Christmas tree. it was a stressful drive because of Music City Bowl traffic but we made it unscathed. shortly after arriving, i got word that my dad (in Iowa) had been hospitalized for a suspected stroke.

not a good day. not at all. really.

Being in control of the mind means that literally anything that can happen can be a source of joy.
-Mihaly Csikszentmihalyi

but as we get a little distance from things, also a very good day.

in spite of the horrible and distressing start to the day, we ended in the arms of people who love us and bring us joy endlessly. we did make it to the concert and enjoyed a wonderful night of laughter and music. we also now have a solution to the pain and, because the risk from colony stimulating factors is outweighed by the need for healing, Andrew's white count should come up many weeks faster than otherwise anticipated. this means we will be able to have fruit again and salad, go hiking and backpacking, go dancing and visit with friends before long. the thought of mediastinoscopy is scary, but the possibility that Andrew will not need radiation is exciting.

my father did have a stroke, which is definitely not good. but it was a mild stroke with minimal to no impact on motor or cognitive function. he is to be discharged, hopefully, today and will need minimal rehab. he also will finally heed requests that he have a second opinion about his overall medical management. most specially in some ways for me, for the first time in over a decade we actually had a real conversation. perhaps it won't happen again, but at least it happened this once.

when viewed with more objective eyes, 2010 has been a year of great success and wonder.

the insurance company has, with ongoing and not-so-gentle prodding, honored Andrew's policy. losing his job as given Andrew more time to heal and provided room for him to discover different strengths and provide unexpected comfort to others in their time of loss. alternately, i have kept my job in spite of all our challenges and learned new ways to push through exhaustion and fear until the light returns. we have a home filled with food and heat - and even Christmas lights installed by strapping and sweet elves.

Andrew and i have met every challenge, test, appointment and treatment together over the last 7 months. we have made special new friends throughout the treatment process and have survived chemo and 'chemo brain'. we also attended two spectacular and humbling dances, received endless support from our friends and family (it is simply not possible to say enough about the invaluable love and support of my parents), continued (albeit more slowly) our work on 'clothes' for Harriet (our home), and found ways together to keep Elise happy in her twilight phase.

finally, Andrew and i love each other more than we could ever have imagined. nearly miraculous for almost anyone these days. a huge miracle given how young our relationship was when we first looked the cancer in the eye.

2011 is going to have black days. days of utter despair. it is also going to have days of great light. days of profound joy and wonder. in short, it is going to be just like every other year. how very wonderful and reassuring.

and it all starts with today!

Welcome to this brand new day. This day has never been lived before. It’s a blank canvas. If you will it so, it can be your masterpiece.
-Hallerin Hilton Hill