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!

---

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)

kitty madness...

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

what else is to say? absolute genius.

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!

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.
-Rumi

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

all Ds are not alike

as many of you know, Monday was Andrew's restaging PET/CT scan and yesterday was Andrew's last scheduled chemo. we have very much been looking forward to starting the new year right - cancer-free!

Andrew has officically completed 6 chemo cycles (2 treatments = 1 cycle). standard treatment duration is 4 cycles. in cases with more extensive disease, 2 additional cycles are added on 'just to make sure'. what that means is that there should not be one single itty-bitty little Reed-Sternberg cell left at this point to foment havoc or disaster.

although things went very smoothly yesterday, it was not the day of crazy rejoicing we hoped for. prior to chemo, nurse practitioner extraordinaire Shanda gave us our copy of the PET CT report:

as you can see, unfortunately we will not be starting the new year cancer-free. 2 cm = a whole passel of little R-S devils. as bad news goes, though, it is good because there is only the one spot. hopefully this means 'just' adding on a course of involved field radiation (vs having to move on to myeloablative chemo and stem cell transplant). we will be told the recommended plan in two weeks when we see the oncologist. in the interim, we are simply going to focus on all that is good and right in the world.

we know we are so very lucky in so many ways. we have each other and continue to find ways to move closer together through, instead of being shredded apart by, the enormous strain.

we also have so many wonderful, loving, amazing friends and family to help buoy us up. every day we are blessed anew with loving cards (special shout-out to Judi for always managing one more inspiring message and joyful card), thoughtful actions, and little joys.

finally, we are very aware that Disappointed is not the same as Defeated! as Andrew said shortly after we got the news, apparently his cells are just a little slow in processing the truth of his new cancer-free status. Andrew's body has taken its own path every step this far - why would things be different now?

in the end, we remain steady in our resolve and faith... but today, today is still just plain hard. today is a day of melancholy.

tomorrow we will set it aside and refill our souls with joy, wonder and laughter. we will drive to Nashville to be with my parents. together we will enjoy the lighting of our family's live Christmas tree for the first time since he was planted in the yard over two decades ago. not to be outdone, New Year's Eve offers an amazing concert to welcome another year.

for now, that must be - and is - enough.

Ansel Adams ain't got nuthin on us!

the photos from Glacier are UP!!!



(FYI: there are a LOT so the slideshow will probably be a little sluggy to load.)

we have a new houseguest

chemo fatigue is upon us.



unfortunately, so is hyporexia (inadequate appetite). waking Andrew to eat and drink feels cruel but must be done - within limits of course - if he is to avoid the worst of the GI effects...

the final verdict, well almost

it has been quite some time since last i updated the blog... a lot has been happening here. the biggest change is that Andrew has developed cancer. the lymph nodes on his neck enlarged while i was at ACVIM and we have been crashing through the medical machine at relative speed to be able to the name 'the monster' for knowing its name will give us power over it and allow us to make a plan.

yesterday was the summative meeting with the oncologist. it went better than expected with a couple surprises.

we knew going in that Andrew most likely has Hodgkins lymphoma, given his age and clinical signs. the hematopathologist was kind enough to review Andrew's slide with us and point out a number of probable Reed-Sternberg cells. we are trying to get hold of the pathologist to see if we can get digital photos of Andrew's RS cells. we would like to create prints to put up around the house, sort of like Wanted Posters! Andrew can then use his eyes to teach his immune system which cells need help dying. (cancer, after all, reflects an inability of the cell to die a normal death, eg apoptosis, due to mutation.) in the meantime, here a great photo i found on Flickr of a RS cell surrounded by visually normal lymphocytes:

Hodgkin Disease, Reed-Sternberg Cell
Originally uploaded by euthman

the Reed-Sternberg cell is the bizarre large cell in the center of the photo that looks something like an owl. most of the little purple blobs around it are normal lymphocytes. because they are so whacked in appearance, it took a long time for scientists to determine that the RS cell is of lymphocyte origin. this is why the disease historically has been called Hodgkin's Disease. with the semi-recent determination that RS cells are lymphocytic, it has officially been renamed Hodgkin lymphoma. for those interested, the Leukemia and Lymphoma Society has some wonderful layperson oriented materials on this disease. i highly recommend the downloadable detailed informational booklet.


there are two big things in determining treatment and prognosis. the first is determining the Stage, e.g. how far the cancer has spread. the Stages are:

Stage 1: cancer is located in a single region, usually one lymph node and the surrounding area.
Stage 2: cancer is located in two separate regions, an affected lymph node or organ and a second affected area, but both affected areas are on the same side of the diaphragm.
Stage 3: cancer has crossed the diaphragm, but remains confined to lymphatic organs.
Stage 4: the cancer has spread to one or more extralymphatic organs, such as liver, bone marrow, or lungs

there are also SubStages:

A: No clinical signs
B: Clinical signs including unexplained weight loss, night sweats or unexplained fever

based on his PET CT scan, Andrew has two foci of activity in his spleen in addition to the big dog activity in his neck and chest. he does not appear to have activity in the liver or other non-lymphatic organs. provided his bone marrow is not involved, this would make him a Stage 3. unfortunately, bone marrow activity cannot be seen on PET scan so biopsy is required to rule out marrow involvement, which the oncologist did yesterday at the end of the appointment. (surprise!) Andrew was a real trooper. my hero, as ever.

now to substage... after a detailed discussion of our sleep habits, the oncologist ruled that Andrew's only cancer-related clinical signs were night sweats were the 5 days when the nodes 'bloomed' in his neck. this is HUGE because it means that Andrew officially is a substage A (which is associated with a better outcome). YAY!

for those of you paying attention, we need one other puzzle piece to determine treatment... that is the Type of Hodgkins Lymphoma. yes - there are different types of Hodgkins. here is the list:

Nodular Sclerosing: the most common type of HL. this type is associated with deposition of secondary scar tissue in the cancer areas, which means that tissues may not return to pre-cancer size even if the cancer disappears. this is why PET scans are used over CT scans to monitor resolution of therapy - they measure activity in addition to size.
Mixed celluarity: similar to above but without scar tissue.
Lymphocyte rich: quite rare.
Lymphocyte depleted: quite bad.
Nodular lymphoctye predominant: rare. very slow growing. often responds to wimpier chemo.

Monday, Andrew had a surgical biopsy taken to determine Type. they went ahead and placed a jugular port for chemo at the same time. this is a wonderful invention that means Andrew will not have to have repeated IV catheterizations for chemo and decreases the risk of chemo extravasation.

so, the bottom line... provided the bone marrow is clean, Andrew will be classified as having Nodular Sclerosing Hodgkins, Stage 3-A. the treatment standard is ABVD given once every 2 weeks, but it will be 12 2-week cycles instead of the 3-4 cycles used for Stage 2. [we are bracing for a long six months!] on the flip, because the disease is so widespread, involved-field radiation is generally no longer in the picture. so instead of two therapy types with differing side effects, we will only be facing one but it will go much much longer.

the goal is still cure - thank the Lord for large mercies. McCachren is estimating overall 90-95% 5-year survival with 80% chance of cure with this treatment plan. (McCachren really thinks ABVD should make Andrew better, though he promises we will end up hating him first.) if this does not work, we may be looking at less fun treatment protocols (myeloablative therapy and stem cell transplant etc) but still with the end goal of Andrew and me getting old and defective together. YAY!

there are still a few tests to go. because of the potential for long-term heart and lung damage from the chemo, Andrew needs to have an echo and pulmonary function testing. also, since he is a fine, young buck, sperm banking. frustratingly, the sperm banking may delay starting chemo for a whole week. :( there is only one place in town and the woman who books appointments won't be in till Tuesday. if we can get that done in time, Andrew can get his first round of chemo Thursday the 7th. otherwise we are looking at the following week. we would obviously prefer not to wait, especially since Andrew's fatigue is worsening rather quickly and his appetite is now come and go. frustrating.

still - all in all - better news than we had dare hope!

we marvel daily at all our gifts - having one another to buoy, comfort, tease and caretake in turn; our amazing medical team who have all been great at their jobs, expedited the work-up so we could still take our trip to Glacier National Park, and have by turns been tender and funny and patient and just the right amount of chiding; our remarkable and loving circle of friends and family, who every day surprise us with new resources, 'normal' attitudes and thoughtful offers; and a wonderful God made manifest in the striking and monumental vistas of Glacier, the presence of a new bird at our feeder, the kindness of strangers, and the strength that fills us when we had been certain we were empty.

we look forward to learning and growing throughout this amazing and harrowing adventure. we hope you will join us!








ps. Andrew has started a blog, for those who wish to play along at home. i know he would love your comments.

pps. for those artistically inclined (or not), we would love to fill the house with words of encouragement and love and images of all the wonders in nature that will await us when we complete this odyssey and get to embark on the next. shout at me if you need our address.

snow day in Nashville!

Sevier Heights: the remodel, days 2 & 3

day 2 actually began with great conviviality on night 1 when Mom and Roland rolled into town. we had a marvelous time dining on fish and chips at the Crown and Goose as you can see here:

our assignments for the weekend were to order tile for the second bathroom floor and to buy paint for the entire house. if we could get some painting in, that would be bonus points.

our first stop on day 2 was Stover's Tile and Liquidation where we met Mike:


Mike was truly not the retiring sort but some folks just don't care for the camera... Stover's is rather inconveniently located so we had hoped to accomplish our mission in one trip (hear the merry peals of laughter from remodelling elves yet?) but 1 inch floor tile is just not that popular. turned out it was going to have to be shipped in as a special order, which often takes 10 days.

Mike just couldn't understand how two days overlap from move-in could be too close until i laid out The List in front of him, highlighting all the items that had to come after the floor. we came up with a compromise. i picked out four tile colors, two of which are shown here:


Mike agreed to personally call the central distributor and determine the relative shipping distances of the tile colors. i told him he could surprise me on final color as long as we had the shipment by day 8. Mike found that a pretty funny and semi-insane attitude for a homeowner embarking on such an epic remodel...


he just had no idea how hilarious. after we left Stovers, it was on to Sherwin-Williams where we met Matt:


who tried to help us pick paint. our first color choices were, shall we say, sour. homework, however, is homework and we are all teachers so we armed ourselves with study guides:


and by the end of day 3 we had the Audi loaded to the gills with paint and managed to even get our first ceiling painted (and carpet torn up):


we also managed a wonderful breakfast at the Round Up Restaurant & Ice Cream Parlor:


where we met the famous and famously sweet MaryLu:


with as many times as she was about to save my heiny (in one way or another), MaryLu really belongs in the A-Team and maybe should have gotten a medal, but that will come later...

Sevier Heights: the remodel, day 1

when i bought the house, i resolved that i would share the remodel progress on the blog. after all, it isn't often in one's life that a person attempts to do 4 months of remodel work in 2 weeks with a few very good friends.

between working on the house full-time for those weeks, continuing with my day job (some deadlines could not be moved), and getting The Influenza - there was no time left at the end of the day to upload photos or write. The Influenza dragged on for weeks after the remodel, slowing me down dramatically, and it is only now that i have been able to carve out time to edit the photos and start the reporting. we certainly worked our tails off, but we also had a wonderful time.

The A Team: Starting Line-up

Don - a Habitat buddy and professional contractor. Don was finishing two new houses early and volunteered two weeks labor on my remodel. Don's most used phrase - "You're the homeowner. What do you want?"

Dora - a Habitat buddy. married to Don. crack construction skills of her own. amazing pumpkin cookie baker as well. Don didn't want to activate Dora unless we had to, probably because Dora's most used phrase was - "I don't care how much work it is. She's the homeowner; she can have whatever she wants."

Chris - a Habitat buddy. works for Don now. Chris is from Texas and used to be a professional bull rider. because he is an American, Chris will only eat 'American' and Mexican food. Chris' most used phrase - "But this is jacqui's house. I want it to be perfect."

me - happy and (perhaps delusionally) full of faith. my most used phrase - "That is hilarious... Okay. How are we going to fix it?"

---

The List 1.0

Outside

• Remove aluminum awnings
• Install shutters
• Tear out concrete drainpipes and rebuild
• Tear out 2nd driveway and fix grade/slope so water no longer pools against foundation
• Tear out shrubs in front of house and fix slope (so water no longer pools against foundation)
• Install window wells
• Replant front of house
• Apply sealant to cracks in brick mortar around house
• Install mailbox
• Replace garage doors and install openers
• Fix gutter by office
• Replace and seal boots on roof
• Add stepping stones or walkway from driveway to front of house
• Fix floodlights over driveway
• Repair screens in screen doors

Basement

• Install post in basement to shore up alcove next to stairs
• Fix leaks under basement sink
• Correct double-tapped circuits
• Turn off power to Ceil heat

Kitchen

• Tear out counters in main kitchen
• Rearrange kitchen to install dishwasher
• Replace/install garbage disposal
• Add shut-off valves to kitchen water lines
• Install new kitchen counters

Second kitchen

• Remove stove and frig from second kitchen
• Install dryer vent from second kitchen
• Move cabinets in second kitchen to accommodate stacked W/D unit
• Rewire for W/D
• Install W/D in second kitchen

Small bathroom

• Tear out bad vinyl in small bathroom
• Tear out bad shelving unit
• Fix subfloor
• Replace with tile floor
• Replace vanity with new sink unit

Main bathroom

• Fix missing tile
• Fix light fixture

House at large

• Cut big-a** hole in wall between kitchen and living room
• Remove 5 unnecessary doors and patch doorjams
• Remove carpet
• Patch cracks in walls, ceiling, stairwell
• Remove second thermostat
• Paint whole house including closets and stairwell
• Replace questionable light fixtures
• Replace outlets with 3-prong
• Clean or replace drapes
• Replace water pipes? (this was very contentious initially with most of the team opposed)

Onto Day 1's progress...

---

Day 0, Don and i met at the house to review the basics of The List and so i could give Don a set of keys. you see, sadly for me, i had to work Day 1. that did not in any way stop Don and Chris from launching the first assault...

i received my first voicemail from Don at 9:18am:

Hey Jax. This is Don. i just wondered... if you have any time between classes and you wanna call the recycling people, there is a pile of aluminum sitting in the driving and you can tell them they can come take a look at it. see ya.

whoa. the awnings



are down!



by noon the living room wall went from this:



to this:





... discovering in process that the electrical for two outlets ran right there and that a light switch in the living room controlled that outlet visible in the kitchen photo as well as an outlet in the living room. this amused me no end and so, instead of removing the switch and replacing with a blank outlet cover, i asked that we leave it.

other progress on day 1: they patched the boots on the roof, took off all the extraneous doors and moved to the basement, and figured out how we could patch the jams.

unfortunately, they also discovered that the wall tile in the main bathroom wasn't, well, tile...



it was Econ-O-Tile. fake plastic tiles not seen since the 50s.

hmm. this could be interesting...

class, this week's theme is fall colors (and bad citizens)

what with Dave closing out his last 100 miles in the Smokies, Highlander hikes have taken on a higher level of 'strategery'. in anticipation of its winter closing, we set off down Noland Divide from Clingman's Dome Road to Noland Creek and along to campsite 63. along the way, we stopped at CS 61 to break the Leave What You Find tenet of Leave No Trace...


... to clean up a disaster left by horse riders. hopefully Jeff won't report our 'outlaw asses' over this.


i think we did pretty good, guys. gold stars all around!



actually, we didn't have any gold stars in the backcountry so we had to make do with campfire lasagna:



the boys were none too impressed as you can see, just barely able to choke it down...




in the morning, i got up early and just sat, soaking up the amazing chatter from the creek. Dave, ever on a mission for new miles, was heading out early to hike up Springhouse Branch trail to the Forney Ridge junction and back. i tagged along for the show. we met back up with the rest of the group at campsite 64 after i was only almost trampled by an overeager horserider. the whole gang hiked out Noland Creek together. [18.4 miles]


John, Jerky Mike, Jack, Ricky Bobby, Doug, me and Dave


the whole shebang can be found here:

God is in the house

this past weekend brought another glorious hike in the Smokies. George, Dave and i headed in from Cataloochee along the Caldwell Fork trail then up and around the Boogerman loop and on to campsite #41. after the previous week's deluge, we were all a little skittish about more rain. happily, we were only drizzled on about 11% of the time. Boogerman was a bit of a climb, but thankfully horses are not allowed. the contrast to Caldwell Fork's erosion and bogs was stark, especially in high incline areas.

campsite 41 is sprawling and peaceful. i pitched my tent cozy against the creek and slept deeply - wrapped in the soothing song of the water.

Saturday, Hollie's dinosaurs made an appearance at the campfire.

Dave took off early to knock out new miles. George and i followed him west on Caldwell Fork to Rough Fork then south up Rough Fork to Polls Gap. we saw signs that Dave was still ahead of us:



near the end of Rough Fork, we ran into a couple horseriders on Rough Fork with a Highlander worthy bottle of liquor. they also had a plastic bag carrying what appeared to be a burrito. turns out, they were heading out to bury a friend's ashes. [we raised Dickel in his honor that night.]

after chatting with the riders, George and i met back up with Dave at Hemphill Bald for a summit photo before splitting up again.



George hiked with me out and back to McKee Branch to get me bonus new miles before heading down Double Gap back to 41. at the double gap trailhead, we stumbled across ne'er-do-wells Bill and Jack. while jawing with them, a black bear emerged on the trail behind us to sneak back off into the woods before a photo could be obtained. it was a profoundly spiritual and humbling experience. we were joined by Jerky Mike and Ricky Bobby in camp. that night, we had a wonderful time trying to move the Big Poplars:



Sunday morning we went off west out Caldwell Fork, east along Rough Fork, up Big Fork Ridge Trail and then back along the last section of Caldwell Fork to the truck. along the way, we stopped to enjoy the dulcet tones of elk in rut. Dave, George and i hit the Newport Rubys where our new favorite waitress assured us we smelled better than her childhood farm and then proceeded to heap abuse upon the boys.


Jerky Mike, Ricky Bobby, Jack, Bill, Dave, me and George

final tally: roughly 35 miles in 2.5 days and another great time, had by all!