1993-2012: Rest in peace, my sweet and naughty princess

On Friday, July 20th, Elise, my darling and much beloved 'daughter', developed multifocal neurologic disease while Andrew and i were on vacation with my parents at Glacier National Park. We had to make the horrible decision to euthanize her that night.

It was brutal and agonizing to not be able to hold my darling Princess in my arms as she set off on her last adventure. Her aunt Patti cuddled her close while her aunt Dianne helped her slip free of her mortal coil. I hear could interference over the line each time Elise rubbed her head on the phone while I told her again and again how much she was loved and would be missed.

My heart is shattered and Andrew and I dread returning home to a truly empty house, but we will always be unutterably grateful for Elise's truly happy death in the arms of loving family and friends.

Your thoughts and written support are very welcome, though I would humbly beg that no one speak to me about this loss. It is far, far too soon and the pain too searing.

and the votes are in

yesterday, Andrew had an appointment for his six month post-transplant PET scan. 

we have both been really, really freaked out - probably for about a month. this PET, after all, is about as high stakes as post-cancer surveillance can get. 

we have tried as best we could to keep it together. there have been plenty of other things - some awesome, some heartrending - to fill the days. 

yesterday had to come eventually though... we got up early to skirt traffic, waited an hour while the radioactive glucose made its tour of Andrew's body, and then we got to wait some more. after 6 nerve-wracking hours, we got the official word. 

the look of a clean PET scan

on the drive home to Knoxville today, Andrew seemed a bit pekid so i asked him what he was thinking. Andrew said the most wonderful thing to me, so wonderful that i feel the whole world should get to enjoy it. he said:

It's good to be healthy. 

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... :)

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 grsmcomments@nps.gov!

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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.

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!

yowsa!

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!

Cancer sucks

and then it sucks some more.

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