Friday, November 04, 2011

Welcome to our secret wedding!

It has taken awhile, but I have finally been able to get the photos of Andrew's and my wedding uploaded. There are a lot of semi-duplicates, but I just couldn't pick my favorites!

Thanks so much to our wedding party/paparazzi: Mom and Roland, Bill and Kelly, my best lady Jen, and best man Clark!

Videos still to follow... :)

Wednesday, August 17, 2011

Backpackers unite – against the GSMNP Backcountry office proposal!

the Backcountry Office for the Great Smoky Mountain National Park has created a proposal that would result in substantial fees to backpackers that wish to camp in the Smokies. they claim that this will improve service, but from proposal review it will simply result in an astronomical increase in Backcountry Office income so they can do, basically, nothing different except provide 'backpacking planning assistance' for roughly 2 dozen people that come in from other states with their dogs in arm and have no intent in learning about the Smokies or abiding by the rules. all at a substantial cost to true hikers and with a substantial decrease in their access! grr......

below is my email to GSMNP – feel free to customize my talking points to reflect your own experience. if you care about hiking, PLEASE take the time to send something in to!

I am writing to express strong opposition to the Backcountry Office & Permit System Restructuring Proposal on behalf of myself and my fiance. As avid hikers and regular backpackers in the GSMNP, we are quite familiar with the various types of park users and the most common violations of park rules. We believe this proposal exaggerates minor challenges with the current system into 'problems', will not result in substantive improvements in GSMNP management or user experience, and is in violation of the state of Tennessee stipulations at time of park founding.

Per the memo released by the Backcountry office, this proposal is designed to 1) improve backcountry travel planning assistance, 2) improve ranger presence to decrease park violations like dogs on trails and overcamping, and 3) improve safety by increasing the ease of automated communication with park users. I will address each of these putative needs in series, along with our concerns.

1) Improve backcountry travel planning assistance
From our experience, most backpackers that utilize the park do so without any interest in 'planning assistance' from the Backcountry office. They have taken the time to learn about the park using widely available resources and personal experience. It is neither reasonable nor fair to subsidize travel planning for a subset of GSMNP users through admission fees on this larger body of park users.

2) Increase ranger presence to decrease park violations like dogs on trails and overcamping
The majority of violations of park rules are committed by a small subset of tourists. These uninformed and disrespectful individuals commonly bring dogs into the park, take them on trails, often off leash, and leave trails strewn with litter. These individuals, however, rarely come into the backcountry. In years of backpacking within the park, the only major violations I have encountered are cases of campsite decimation at popular horse campsites (discussed further below). With regard to typical and frequent violations, individuals generally are confined to a select group of overhiked trails (Alum Gap for example). Very few rangers are needed to provide presence at these widely used and shorter trails. The astronomical fees generated by this proposal are hardly appropriate to manage these issues.
With regard to decreasing 'overcamping' and the impact on local vegetation and wildlife, we anticipate that this proposal would actually worsen the (currently minimal) problem. Shelters already require reservation, as do the most frequently used sites. If additional areas of overcamping are identified, they should be addressed on a case-by-case basis and potentially additional sites should be added in hard to reach areas. We anticipate enactment of this proposal will result in decreased compliance with permit requirements in general, increase non-permitted camping at established campsites, and increase 'pirate camping' to avoid potential ticketing due to any realized increase in ranger presence in the backcountry. We feel that this is particularly true because of ill will generated by the radical change in availability of campsites to users and the unfair leverage of costs related to a small subset of users onto individuals that often are younger and thus much lower in income, yet they are simultaneously more informed about and committed to the park. Additionally, anyone who uses the trails is aware that horses do most of the damage. Backpackers have very little impact, yet this proposal would leverage the costs of policing horse users, and repairing their damage, on hikers. If an access fee is to be charged, a fee per horse should be added and the cost for hikers decreased proportionally to their impact.

3) Improve safety by increasing the ease of automated communication with park users
In spite of our the remarkable way technology has permeated almost every corner of society, backpackers often travel great distances to come to GSMNP. Computers and phones are often left behind to prevent theft or rendered useless by 'No Service' zones. This means that users are quite unlikely to receive automated communications in a timely fashion and will still be dependent on trail signs for updates. Additionally, because all campsites would be reservation only, hikers so unfortunate as to have a campsite be closed would then be forced to either cancel plans, camp in violation at established sites, or pirate camp.
Additionally, GSMNP Backcountry officials currently can update all park users on trail situations by listing trail and campsite closures on their website and at trailheads. The website is quite frequently out of date, as are trail notices. Adding additional layers of administration and interfaces to update information can only be anticipated to worsen this process. Additionally, because an online reservation is tied to an individual email address – regardless of whether there is 1 or 8 people in the party – this would shift the ability to update users on campsite conditions from all individuals to 1 person per party.

Finally, from the NPS website:
When the state of Tennessee transferred ownership of Newfound Gap Road to the federal government in 1936, it stipulated that “no toll or license fee shall ever be imposed…” to travel the road... Action by the Tennessee legislature would be required to lift this deed restriction if Great Smoky Mountains National Park ever wished to charge an entrance fee.

Because many areas of the park can't be reached without overnight stays, the proposed 'access fee' is in effect an entrance fee or toll, which violates the conditions under which GSMNP was founded. Changing this mandate would require action by the Tennessee legislature, which seems unlikely (and ill-fated) because this proposal particularly impacts Tennessee residents who regularly use the park and adjust their plans on short notice based on weather factors. Legal challenge can be anticipated on these grounds should the Backcountry office push forward with this proposal.

My fiance and I urge you to reconsider this unfortunate proposal. We strongly oppose it and will be reaching out to our state and local representatives. We also will be sharing our opposition with non-profit groups whose projects, like the Trails Forever program, we fund to sustain and enhance GSMNP.

Sunday, May 01, 2011

from the ever-glamorous WAC* frontlines

[*War Against Cancer]

time has gotten away from me as usual, i am afraid, and so this update is a bit overdue. i am happy to report that, even though Andrew gets tired too easily and stays that way too long, things are strangely a little better here!

Andrew continues to struggle with significant fatigue and his nodes remain big and bright (deep in the heart of texas). however, things here are seem to finally be moving forward - but mainly by staying still!

even with recuts, repeat staining, and multiple pathologist and oncologist reviews at multiple places - no one can find the cancer even though everyone agrees it is still there. although no one can offer an alternative idea for what is going on, no one is comfortable/willing to treat without a histologic diagnosis. they all agree that high-dose chemo with stem cell transplant and radiation is in our future. it is just a matter of when.

our options at this point are to wait and see what happens and recheck a PET-CT in 2 months in hopes of finding a new way to get to the answer or to allow them to perform a sternotomy (crack the chest) to get more tissue in the hopes of getting a different result than previously occurred, which we think is nuts. (the thoracic surgeon agrees.) so we have gone into medical time-out. we are electing to wait and focus on non-medical symptom control for the fatigue and improving general wellness.

somehow this feels a lot different from the last 4 months of waiting and fear to both Andrew and me. unlike before when we had to be in a state of readiness to cancel everything and potentially move to another city on a few days notice for an indefinite time frame, now we are looking at having a known time frame for rest without the pressure to get complications healed or else really bad things will happen.

not having to consider treatment right now is a particularly good thing since our house and vehicles were moderately ravaged by the recent apocalyptic hail! we are going to need that time to get everything squared away with insurance and repaired. we feel, recent natural disaster aside, that this is a wonderful time for us to work on emotional healing, connect with other cancer patients and families through the local cancer support community, and just breathe. i think we each laughed more in the first few days after that appointment than in the previous 5 months all together!

Wednesday is Andrew's birthday. we are looking forward to reveling in the joy of being lucky enough to have one another as travel companions on this crazy journey. we hope you will take a few minutes Wednesday to celebrate with us in spirit, albeit from a distance!

special thanks to Miss Steinie for the amazing photos. i 'Dance Happy' just looking at them!

Thursday, April 28, 2011


talk about an amazing storm!

first off - Andrew, Elise and i are all fine. Andrew and i were hit with 3 inch hail driving home from dinner. Andrew did a wonderful job keeping us safe in spite of arcing sparks from power lines and shredding trees. He eventually found us shelter under an overpass (after the windshield cracked in 3 separate places). Esther's (the car's) body is completely pockmarked, the driverside mirror casing broken, and the passenger-side mirror gone, but Esther survives. Anything necessary for safety will be out of our pockets to replace because the car is too old to have comprehensive coverage (and would instantaneously be totaled for any claim anyway).

The house is mostly intact. We are so grateful for our red brick. The neighbors' siding is completely destroyed. Several of our windows were exploded - basement and front screen door. Glass from the basement windows rained all over the new car (oh yeah - we bought a car Saturday) but it doesn't appear to have done damage to the car. The shutters on the front of the house were destroyed, the gutter torn off one side of the house and the outside light fixtures completely shredded. About half of the new trees may not survive. Porch furniture, bird feeders and a few outside pots shattered. The big unknown is the roof right now. We know our back neighbor ended up with at least 3 holes in his roof from the hail. We are heading up top soon to see whether we have similar damage. The damage is truly awe-some.

I am sure there will be more things found destroyed, but mostly we are just thrilled - truly beyond sunny - to be safe and not have any friends or neighbors injured (as best we know right now). All the trees that came down in our immediate neighborhood missed our neighbors and their houses - leaving no one injured or killed. yay! What an enormous blessing!

Hope everyone else is safe and whole as well. We know we cannot be the only ones in the storm's path - though the claims' agent guessed our area code so apparently we got the worst of the hail. In a day or so, i am sure Andrew will have photos up on our Flickr account and his blog of all the carnage. In the meantime, here is a picture of Andrew with some of the hail to give you an idea of the beating we took. I took it with my cell phone at the underpass. It had already melted quite a bit!

Friday, March 18, 2011

Cancer sucks

and then it sucks some more.

Life is just one damned thing after another.
- Elbert Hubbard (1856 - 1915)

Friday, February 11, 2011

kitty madness...

we'll give you a f***ing dog!

what else is to say? absolute genius.

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