Friday, August 29, 2008

One woman, two dogs and two leashes

I am standing on the corner between my 100-year-old city house and the high school park, my urban development neighbor bustling around us and five leashed dogs sitting , waiting for my 'okay, go on' permission No pulling, no jerking ahead or backwards—-five dogs all walk and stop and sit, move forward, sideways and backward as a team, more or less on my left or just ahead of me, with only the occasional 'over here' or 'this way' to remind the youngest to pay attention.

I was younger then--in my city years—-so maybe I was closer to the top of my game. Moving easily along sidewalks with a gordon setter, three springer spaniels and my small black mix, the dogs sat at heel when I stopped or when bikes whizzed past, eagerly accepted pats from passers-by, stopped at corners and waited to cross the street on command. Five well-worn leather leashes—-two in one hand, three in the other—-kept my team within a couple feet of me at all times.

At the park, they would have more freedom. Jazz and Muni, with 100% reliable recalls, could bounce around us playing tag, leashes off and draped around my neck. Taryn and Nola, hard-wired escape artists I trusted only one day at a time, would alternately join the game of tag dragging a leash so that I only had to monitor one of them. Bard the setter would be switched to the long flexi lead to stretch his legs, provoking the tag-play by bouncing just out of reach of whichever dog was confined to the six foot radius.

Switching each leashed dog to the flexi meant downs and stays for everyone. I'd un-drape one six-foot leash from my neck, and clip it to the dog's collar while unclipping the retractable leash at the same time—-then clip the flexi to the next dog, remove that dog's six-footer and drape it around my neck. Happy 'okay', treats for all, and then once again five dogs would bounce in a haphazard circle with me as their center pin. An exercise at the park would be an hour project—and then, collected up on five short leads, flexi stowed in my waist pack, we'd head back home, five dogs of different sizes walking as a team around me.

How did I ever manage to walk five dogs at once, I wondered this morning as I give Madison a 'sit' and send a gentle pop in Casey's direction to get eye contact for a sit signal. Now two english cockers--the old red boy and the young blue roan girl--take me for twice-daily walks on their own agendas. One is busy chasing scents on the 26-foot flexi, and one exercises nose and legs on a 12-foot homemade long line of 4mm orange-speckled climbing rope. Now-aging Casey used to bounce around loose on the 300-foot electronic leash, responsive to the slightest tap on the transmitter I wore around my neck. Meanwhile his partner in crime—-first Bard the gordon setter, then Reuben the gordon setter, and now Madison the english cocker—-would exercise nearer to me at varying levels of skill, safely tethered to listening by the retractable flexi. Bard used the same flexi for almost 10 years, but Reu wore out the springs in four of them while he lived with me. Madison is well on her way to retiring flexis, too—-she's on her second retractable lead in two years.

Bard was the first dog I put on an electric collar. He responded to it completely, and for several years, I walked carrying two shorter leads around my neck with the e-collar transmitters on the whistle lanyard. Bard and Casey exercised around me, playing tag with each other and reliably listening with at least one ear for the direction words--'over here, boys,' 'leave it,' 'down,' or 'come!' When Reuben moved in, his puppy time spent loose and reliable was only months—-as he grew into headstrong adolescence, he started to ignore the e-collar. After two frantic chases, I put him on the retractable lead to reinforce my status as she-who-must-be-obeyed. Casey stayed loose, listening to his own e-collar while Reuben grew up, and later being a good example while Madison learned words.

But these days, the 14-year-old red dog needs hand signals to see the words he can no longer hear. His old e-collar startles him, rather than guiding him, so these days it hangs uncharged on his crate. Madison is doing much better with skills like 'come' and 'over here' and 'wait' -- I even get the occasional 'sit' at a distance. But knowing the limits of her leash and remembering not to pull me are skills with plenty of room for improvement, and I haven't been out of the hospital or strong enough to give her the e-collar groundwork she needs to understand and respect the tool.

So I'm back to two leashed dogs—-and carefully switching one from retractable leash to shorter leash during each walk. Sits and stays hold them in position for the leash switch this time around. But I have to remember to motion an 'okay' release for Casey; he no longer hears the permission to stop working, Madison will move and start bouncing right away on the 'okay,' while Casey holds his sit or down, watching me expectangly for his 'go' signal.

My leash handling suffered during those years of exercising dogs reliably loose on e-collars. I could never manage two flexi leads, but these days I find one flexi and a shorter non-retractable leash a challenge. My fingers fumble as I switch the leash clips, and I've stopped both dogs more than once by stepping on a dragging long line that slipped out of my hands. I finally put a carabiner clip around the handle of the flexi, so that I can run the handle loop of the climbing rope long line through and anchor it. I can usually still manage to hang on to the handle of the flexi, controlling both dogs by rotating the flexi handle around and using it to give oomph to my line control.

Casey can't hear my reminders to stay close, and Madison would follow her nose off a cliff if the scents were interesting enough. Sometimes when I rotate the flexi handle over my head or around my back to straighten their lines, I tangle a line in my sweatshirt. But the dogs don't seem to notice that I'm no longer the woman who expertly handled a five dog team along city sidewalks on daily walks to the park. We're just one woman, two dogs, and two leashes, moving from place to place more or less in the same direction, one step at a time.

Saturday, August 16, 2008

The thread that ties us all together...

A few days ago, Leroy Sievers, author of the NPR blog "My Cancer," wrote about having to sell his Jeep Wrangler, a vehicle he hadn't been able to drive for a year. He wrote about the 'Jeep wave,' about giving one last wave to other Jeep owners on the road.

Yesterday, I parked next to a mud-splattered Jeep Wrangler at the gas station, and I thought of Leroy. Words that make an impression, that spin the slender thread that ties us to each other.

Today, when I opened the blog feed I've looked forward to reading every weekday for the last two years, this was what it said:
-----------

Leroy

Posted: 16 Aug 2008 07:59 AM CDT

Dear friends:

I'm so sorry to bring you this news. Leroy passed away last night. It happened very quickly.

You will hear from Laurie later. In the meantime, please let me tell you something all of you already know, how much this blog and all your comments have meant to Leroy. He felt all the affection and good wishes and strength you sent him every day. He told us that of the many things he had accomplished, he was proudest of My Cancer. The connection he felt with all of you made such a difference in his life.

I feel so privileged to have had a chance to work with Leroy and call him a friend. All of us here do. We will miss him so much, just as you will.

If you'd like to, please leave your thoughts, remembrances, anything you want to write here. I know Laurie will read them. I know you will keep her and Leroy in your thoughts and prayers today.

--Maeve McGoran
-- Wright Bryan

------------------------

Here's one last Jeep wave, Leroy, from the girl in the red Chevy S-10. I saw you in that Jeep yesterday, and now I know why. Drive fast, drive hard, be who you are and who you want to be in the place beyond mortality, beyond cancer. You've earned it.


Thursday, August 14, 2008

Resources for cancer patients who have to travel for treatment

I've kept a file on all of this kind of information I've accumulated over four years as a traveling cancer patient. My personal experience is all within NYC, but I've included here the information I have that applies to other sites in the US. It sure is tough to find this information when you really need it...hope this helps someone else in his/her search for affordable housing or transportation to a distant treatment center. I checked all of these links and they were working as of today (August 14, 2008)

Websites which list housing resouces across the US, by city/state/hospital

Both the NAHHH and Joe's House sites try to list all available hospitality houses.
-- National Association of Hospital Hospitality Houses Inc. (NAHHH) website: http://www.nahhh.org/
-- Joe's House website, which also includes area hotels: http://www.joeshouse.org/
American Cancer Society sponsored houses only:
-- ACS Hope Lodges website: http://www.cancer.org/docroot/subsite/hopelodge/index.asp
FAQs: http://www.cancer.org/docroot/subsite/hopelodge/frequently_asked_questions.asp
Hope Lodges are available in 19 states and in Puerto Rico.

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Individual Hospitality Houses and Treatment Center Information

Baltimore, MD
Johns Hopkins housing resources webpage:
http://www.hopkinsmedicine.org/the_johns_hopkins_hospital/patients/housing.html

Boston, MA
Hospitality Homes website (serves all Boston hospitals, including Dana-Farber Cancer Institute):
http://www.hosp.org/index.htm

New York City, NY
Miracle House website: http://www.miraclehouse.org/
-- 560 West 43rd St., NY NY (near 11th Ave.) in the RiverWest apartment building (doorman, 24-hr. secure bldg.); organization serves patients and caregivers receiving treatment at any NYC hospital
Memorial Sloan Kettering Accommodations webpage: http://www.mskcc.org/mskcc/html/5364.cfm
MSKCC social worker telephone number (for lodging assistance and ACS Hope Lodge referrals): 212.639.7020

Philadelphia, PA
Fox-Chase Cancer Center housing resources webpage: http://www.fccc.edu/information/lodging/hotels.html

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Free Air Transportation for Cancer Patients

AirCare Alliance website (list of as many free air transport resources as they can find):
http://www.aircareall.org/
AirCharity Network (coordinates flights for people in need, some on commercial airlines) website:
http://www.aircharitynetwork.org/Home/tabid/850/Default.aspx
AngelFlights (volunteer, no fee) website:
http://www.angelflight.com/
Corporate Angels (free flights for cancer patients on corporate jets) website:
http://www.corpangelnetwork.org/

Wednesday, August 06, 2008

My voice...My Time

I can't remember a time when I wasn't writing, and for lots of my life, that writing included lyrics and poetry. But there have been long periods when the need for technical writing and web writing took away the lyrics and the poetry. Then, without warning, the poems come back, like premonitions of a future I can't control. Sometime in the last 18 months, the poetry came back...and it seems to be sticking around.

I wrote a poem that I buried with my father last year, saying forever some of the things we couldn't talk about as he drifted into dementia.

I wrote poetry about the dogs playing in the snow, about New York, about treatments and about cancer.

Then, last January, Leroy Sievers blogged about wanting to run away, and I realized that I run away every day for a few minutes--every morning, while I argue with myself whether to get out of bed and face the day (or not.) I wrote it down, and then on a whim, sent the little poem to the annual contest sponsored by the local chapter of the National League of American Pen Women. Somebody liked it. So I got the call that I'd taken a 3rd prize in the adult division, and was invited to the awards ceremony and reading. Unfortunately, the ceremony and reading were held while I was in NYC, recovering from surgery. So my sister-in-law Linda B went in my place, and brought home the prizes (two books of poetry, a check for $25, and my poem, hand-calligraphed and framed with the award certificate.

Full disclosure--when I was in high school, I took a prize in the teen division of the same contest. My poem, 'Suburban Park,' was a kid's memory of the deserted amusement park I passed every day on my bus ride to school. No money, but I won a copy of Kahlil Gibran's 'The Prophet' which I read often. Every 40 years, I guess my poet's voice comes back. ;-)

So here is my voice...Leroy, my friend, this one's for you. For both of us, all of us, who've ever debated whether to get out of bed in the morning, and ever wondered what has become of our time to ourselves.
----------------------
MY TIME

6:00 a.m. to 6:05--
five minutes, just for me.
Five minutes to run away, drift away--
be any place in the world but here.
Five minutes
before Madison kisses me awake,
before Casey brings me the tennis ball.
My time, alone in my head and my heart,
gathering myself to face another treatment
and another day.
Five minutes
without work,
without pressure,
without Xeloda or Kytril or radiation.
Five minutes between the first alarm
and the snooze button--my time.
At 6:06 a.m.
I will still have cancer,
but 6:00 a.m. to 6:05 a.m. are all mine.
-----------------------

Tuesday, August 05, 2008

Mi Viejo

My heart-dog puppy is stretched out on the coolmat bed I keep next to the loveseat, sound asleep. I know he's hot, even though it's only 65 degrees--when he's cold, he curls up like a sleeping sled dog or cuddles at my feet.

Casey will be 14 this Thanksgiving--plenty active but no longer the little red demon I brought home during a blizzard, the english cocker puppy who fit into a 100 airline crate and chased tennis balls for hours. He'll still ask everyone he meets to scratch his stomach and toss his tennis ball--but these days, he does finally relax after 25 minutes or so. He's slowed down and sometimes tries to go his own way during our walks. It's no longer safe for him to roam around me free-ranging on his electronic collar--when we're separated by more than a 15 feet or so, he can't hear me. Using his e-collar startles him now; he's more self-absorbed and nose-focused (you gotta use the sense(s) that work!) If he's followed his nose out of my sightline, he gets visibly disoriented when he looks up and realizes he's lost me. So I decided it was time to keep him closer on walks, and reinforce the attention to me that's been standard for most of his life but is slowly losing out to his failing hearing and eyesight.

Given the chance to follow his nose, which has a direct line to his stomach, Casey would always get himself into trouble even as a youngster--only a strong 'Come' command and the reinforcing e-collar kept him safe and close. Now, it's even more important for me to be able to guide him. So outdoors, he's back on a long line so I can remind him where I am, and which way is 'here.' But mostly to others, Casey doesn't look old. Unlike a lot of red dogs, Casey's version of gray is a colort that passes for blonde...and maybe it's causing more 'blonde moments.' Moments of sparkling puppy burst out of his old dog body when I'm least expecting them. He's not too stiff to burst into a run and or surprise me with heel position or a flying leap through my tire or cavalletti--usually because he thinks Madison is getting his share of treats.

But at 3 a.m. today I woke up, riding a new speed wave from the Decodron in yesterday's chemo treatment, Madison opened her eyes, rubbed her muzzle on my face, stretched, and pushed closer to get her morning kisses. Sure, the speed woke me up a couple hours early, but if I'm up, so is my little spotted girl, mi punta nina. We hugged. We cuddled, I got up and moved off the loveseat, heading toward the bathroom with M. ahead of me, bouncing off her crate door, asking to get lifted up, expecting breakfast. I tucked her in and told her 'it's not time for breakfast yet, go back to bed, mi punta." Made my way back to the loveseat and laid down again.

Casey snored on through it all. He's still snoring.

All of the dogs--Taryn, Jazz, Muni, Nola, Bard, Reuben, Madison, and Casey (until tonight) -- always followed my movements around the house. When I worked from home, and moved to get a new bottle of water or cup of coffee, the entire dog posse would rouse themselves and follow, bumping my legs and wondering if there was anything in it for them (food? are we going out? is someone at the door? why are we getting up again?) To do anything that required a lot of moving around from room to room (cleaning, cooking, laundry), I had to put them on long downs, or put them in crates.

My clue that a dog was getting older was reluctance to limit their own beauty rest just because I was on the move. That sleepy-headed "don't get up on my account" look was always followed, sooner or later, by the day when they became completely oblivious to my movements (unless I actually touched them...)

The dogs who grew old in my house before him have taught me the next stage for Casey--he'll start waking and sleeping on his own schedule. On the days when I don't crate him together with M., Casey already protests with that old-dog, I-can't-even-hear-myself bark. He can't hear me telling him to be quiet, and he's not done making noise until HE's done. On his own schedule, he'll settle down and be curled up asleep by the time I come downstairs from my shower.

Today, Casey slept through my early morning speed-rush. When I came back to the loveseat, I nudged him and he sleepily moved up to snuggle. Now he's stretched out at my side, head resting on the loveseat arm that is his favorite pillow, fast asleep again. So unless Madison hears the mourning doves and tells me she's ready for breakfast and a walk, I'll write until Casey wakes up, and then our days will get into motion. First their breakfasts, then our morning walk, then I'll dry the dew off their feathers and put them in crates while I get ready for my own day. My new day. My time used to be controlled by chemo, then work, then radiation, surgery and now more chemo. But while chemo still chimes in, I'm now on Casey's schedule, and we only get up as a group when he sees fit.

My heart dog puppy, my red demon, my cuddler--now truly an old man, mi viejo. Sleep tight, Casey. Breakfast and your tennis ball will be waiting when you wake up.