My first Tin Can Tourists rally

I love vintage trailers.
I own and am in the process of refurbishing a 1980 Sunline SunSpot. I participate in the Teardrops & Tiny Travel Trailers forum.
I've even met the owners of two teardrops, and toured their rigs.

But so far, every gathering and trailer rally within 8 hours' driving distance has fallen on a weekend with a major family event, or a chemo weekend, or a weekend during the time I'm was still recovering from surgery.

Until this weekend.
I decided that I was still a little too chemo-brained to haul my own trailer to Sampson State Park, and to try to camp in the deluge we've been having since Thursday--but I sure could drive down for the day!

And I saw the coolest trailers. Many old Airstreams and Shastas, a Yoder Toter teardrop, a couple I couldn't identify, and the coolest of all--a 1960s Mostard Yvonne in near original condition, imported in the 60s from Sweden and only on its second owner.

That's the Yvonne in the picture. And it was even cooler inside.

too sweet to be true...

The Corn Refiner's Association is feeling maligned. Sugar, and high fructose corn syrup (HFCS) are being named more frequently as culprits contributing to obesity in America. So they've decided to improve the image of HFCS...to, in their own words, 'change the conversation.' They'd like the world to believe that HFCS is, like sugar, 'okay in moderation--but that assumes that moderation is possible. HFCS is added to many commercially prepared foods--so many, in fact, that only by a minimal to moderate consumption of any type of commercially prepared food can you even hope to limit or eliminate its consumption. HFCS keeps all sorts of things moist--baked goods, granola bars, caramel. And when it's not keeping things moist, it's being used as a sweetener, since it's readily available and in some cases cheaper than sugar. Pretty much all of us have eaten some level of HFCS at some time unless we are consciously striving to avoid it.

Maybe what would help their cause is to just change the subject. These ads are being compared to tobacco companies telling us that nicotine is not addictive, and mining companies calling coal a 'clean' energy source. Now granted, the FDA started this whole misconception with its convoluted definition of a 'natural' food--but honestly, by description of the process, HFCS is refined more than five times more than refined table sugar.

Check out the Corn Refiner's Association here--the sweeteners quiz is particularly oddly constructed. You can view the current ads from the links at the bottom of the website, under the big close up of that ear of corn:

http://www.sweetsurprise.com

The Corn Refiner's Association wants to change the conversation about HFCS, in the same way that an illusionist chooses to misdirect your attention from the man behind the curtain (check out the .pdf's which summarize the current campaign by opening the "Press Kit" link on their website.)

What they appear to have forgotten is that some Americans can actually think, and make reasoned and informed choices about what they put in their bodies.

HFCS? Thanks, I think I'll pass.

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.

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.

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/

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.
-----------------------

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.

Coping with Cancer--hope versus honesty

The title of this thread is the problem in a nutshell.
Coping doesn't have to mean “hope versus honesty” -- but some people feel that they can't spend too much time with honesty, or it will destroy them. Hope and honesty don't have to be adversaries, but if in your world they are, then that's your choice. It's not the choice that would sustain me through a four-year-long cancer fight, and it's a choice I've watched take down others--but I'm not here to make someone change their approach. Go ahead, give it a shot. But I choose another way.

For me, since diagnosis, coping has always been about hope through honesty, within honesty, because of honesty. Hope and honesty are inseparable. For me, without honesty hope is fleeting and one-dimensional, at the mercy of external things over which I have little control. Without honesty and reality, there is no room for hope to evolve, to get strong enough to be able to help me cope with changes and the normal ups and downs of life, much less cope with cancer. Without honesty, my emotions would be all over the place, and I wouldn't be able to function. But when coupled with honesty, the hope inside of me is neither diminished nor expanded by external influences unless I choose to let those things affect or inspire mre. Hope becomes something I can control. My choices. My strength. Based in honesty. Big enough, and strong enough, to handle what is ahead, no matter what that turns out to be.

I've been told publicly and privately that I didn't have the right to take away anyone's hope--like that was something I was trying to do. To me, that just reinforces that the people who made those statements don't really understand where the strongest hope can come from.

Hope, like self-respect and confidence, is neither something that can be taken away or given to you by another person. Hope lives within you. Only you can access it. Only you can silence it. It is your job to nourish it--and lots of people don't have the first clue how to do that. External influences can inspire you to spend even more time nourishing your store of hope, but no one, nothing, can take hope from you unless you give them that power.

I don't have the power to take away anyone's hope—because each of us controls our own hope, and how we use it. And just as I don't have the power to take away hope, neither do doctors, or other people, current events, sudden deaths of famous people or posts on a forum. If those things take away your hope, even for a second, it's because you gave them permission to do so. If they give you pause, and then reason to regroup, you may be beginning to understand that hope springs from within--and you can control what affects it.

But these days, rather than looking in the mirror to recognize and become our own sources of hope and strength, to be the people we are destined to be, we more often look to others to give us hope and motivation—things no one can give us. We have to find the capacity for those things within ourselves. Any external inspiration can be a little fuel for own internal fires of hope and strength, but once that external fuel is gone, it's up to us to keep those internal fires burning. And by the same token, any external demotivation—a setback, the death of a friend—may briefly dampen our own internal fires. But again, it's up to us to move forward and keep those fires of hope at the level where we need them. It's no one else's responsibility but our own.

To paraphrase Gandhi, who was speaking about self-respect,
“They cannot take away our hope if we do not give it to them.”
To paraphrase Eleanor Roosevelt, who was speaking about inferiority,
“No one can make you feel hopeless without your consent.”
As we try to deal with cancer, we have to understand and accept that we control our own hope—and no one can take hope away from us unless we give them that permission.

If you really want to help me, then you have to respect me first.

I've been following Leroy Siever's blog for a couple years, and Leroy's reaching the point in his dance with cancer where he is becoming more incapacitated, more dependent on others. He's having a hard time with this phase, as anyone who is used to being (in his words) 'the strongest guy in the room' would have. Heck, anyone who wasn't brought up to be waited on hand and foot would have a tough time in this phase. And he's getting a lot of advice from people who appear to have the best intentions that he should shelve his pride, surrender his notions of being strong and relax and enjoy being able to 'give the gift of helping you' to the people around him.

Pride, and pridefulness, after all, are sins. Self-sufficiency is a good thing--but somehow, pride in that self-sufficiency is somehow considered a bad thing. Who wrote THOSE rules?

Y'know, I may someday be in that spot, too. This summer's chemo treatments and surgical recovery have reminded me, once again, that Stage IV cancer is serious and that the one sure thing in life is that no one gets out alive. There have been days I've been too weak to drive, to climb the stairs, to take a shower, to take my dogs for a real walk, to go grocery shopping, to run more than one errand at a time. It makes me wish that I was still in NYC, where you can be totally laid up, a shut-in in your apartment, but where you can have literally anything delivered 24/7/365.

But central NY isn't NYC. Here, some things you just have to do for yourself. So I'd just like to say, for the record, that I haven't spent four years doing whatever I can do to kick cancer's @ss, just so that in my incapacity I can make someone else feel fulfilled and 'gifted with the ability to help' by any disability that may happen to me. Sheesh. Since when does someone need another's incapacity to feel 'fulfilled' or as though that person has given them a gift, given them the ability to help them? Have we as a society lost all concept of what 'help' can mean?

I understand that people see friends or family in a bad place and want to help--but their good intentions do sometimes hit a wrong note. Making a pot roast for a vegetarian or a mac 'n cheese casserole for someone who isn't eating carbs only makes the helper feel good; it doesn't help the patient at all and may even burden them. Offering to pick me up and take me someplace less than a mile away (when I can still drive myself places, and need that kind of normalcy) may make the driver feel like s/he's contributing, but it does nothing for my own fragile self-esteem. And while I'm willing to ask for help when and where and in the ways I need it--and I do, sometimes to no takers--I'm not sure why I should be grateful or artificially happy accepting the fallout from peoples' good intentions when those things don't actually work for what I truly need. Sure, they mean well--but the first rule of helping should be the same rule that applies to medical pros.
The first rule should be DO NO HARM.
The second rule should be RESPECT THE TRUE NEEDS OF THE PERSON YOU'RE TRYING TO HELP.
The third rule should be HELPING SOMEONE IS not ABOUT YOU, and not about what you need. Any benefit(s) you may gain by helping should be secondary to actually helping the person in need.

This ain't what christians call 'pridefulness' talking. What's talking here is someone who recognizes that if you truly want to help, if you truly want to get the gift of helping someone, then you can help someone at any time. You don't need them to be incapacitated in order for you to accept your own gift of being able to help. You can help even if they aren't in obvious need--as long as you recognize that what they need from you may not be what you traditionally consider 'help' -- a casserole, a ride, a hand up, or help with daily living. Yes, they may need those things, and if you can do them, please do so--but for heaven's sake, please don't offer me help from some weird symbiotic 'accepting your gift of being able to help you' place--because that ain't, IMO, what helping people is all about. Help isn't about needing someone else's trouble so that you can shine. If you need someone else's troubles to shine, then maybe you need a little more polishing. ;)

If you want to help, you can do the jobs you do, as well as you can. I know people don't think this means much, but doing even simple things elegantly and well is a gift of conscious living that can never be equalled. You can bring a little normalcy to your interactions with the cancer patients you know. You can get screened, so that this illness doesn't wreak havoc on another life or lives. You can fund-raise, if that's your style, or make others aware of the dangers of CRC or any other cancer or illness that you choose--all in their name and inspiration. Several people in my company rode on my behalf and in my inspiration in Lance Armstrong's 2004 and 2005 cross-USA bike races...I can't tell you what that meant to me personally, and how much their efforts made a lasting difference. You can think good thoughts. You can pray. I found myself, quite unexpectedly, on a prayer list this morning. I'm a buddhist, and every breath is a prayer, but if someone else chooses to pray for me in his/her own way, I'm just going to say thank you. You can be there.

You don't necessarily have to 'do' things for me, and I don't have to be incapacitated for you to help me. To think that my incapacity 'gives' you a gift of the necessity to help is, to me, horrifying. If you need someone else to be incapacitated before you understand that the person can give you a gift, or that you can give them something of value, then something is terribly wrong with the relationship.

Ranting isn't my style...but if I read or hear one more well-intentioned statement along the lines of 'give the gift of letting the people around you help you,' I might have to give up non-violence.

Taking my city back...

I love New York City.
For three decades, NYC has been mecca--the land of wonderful food, something new and interesting around every corner, so many places to explore and things to do that never in a lifetime could I or would I be bored or lacking for something to fascinate me.

As an beginning art director, I came to NYC for one or two conferences a year, back in the days when you could hop a plane from Syracuse to Newark at 8 a.m., be in the city by ten, spend the entire day hopping from place to place, take a bus back to Newark and catch another plane that would have me home by midnight--all for $69 round-trip. I miss you, Peoples Express, with your courtesy carts pushed up and down the aisles of the small commuter jet, the steward collecting both fares and money for whatever snacks and drinks passengers wanted. I could come to NYC even though I didn't have a credit card, because on Peoples Express, you had to pay cash. Cool. NYC was suddenly available for less than bus fare, to a broke college kid with no credit card.

Then came the dogs, and NYC was Westminster in February. And as I got better paying jobs, it was the Rockettes at Christmas and maybe a one or two-day shopping bus trip.
Yeah, I love NYC.

When Adam and Brian were 15 and 12, I asked my sister if she thought it would be okay to take them to NYC. Well--sure...could she come too? I found a great deal on a fancy business hotel for arrivals during Thanksgiving weekend. Grandma came too, and of course it was 70 degrees and sunny when we'd all planned for 30 degrees and winter. But the boys loved it. They'd never seen so many people try to cross a street at the same time, never seen six lanes of taxis playing chicken, never stayed in a hotel that didn't have a public ice machine (the bellman brought ice to the room). They'd never seen street vendors, been to a street fair, eaten in a tiny Italian restaurant where the menu was in Italian and the fresh pasta was cooked to order. They'd never seen store windows decorated for a holiday with so much abandon. They'd never seen so much of anything before.

After 9/11, I decided to go to NYC again. Brian was a senior in high school by then, and Adam was away at college, so it was a smaller crew--Brian, my sister, and my mother. And while we saw the Rockettes (again) and caught a Knicks game, it was a more somber trip that time--Brian did a phote essay on the flags and memorials that were on every block amidst the holiday excess he remembered from his last trip.

NYC. Someplace exotic and familiar at the same time, always a friend, always fun--my favorite city, my favorite quick vacation.

And then, I got cancer. I was referred to Memorial Sloan Kettering. Now, traveling to NYC was also associated with feeling like crap, with scary tests, with stressful doctor visits, with extended hospital stays.

I was in the hospital during Christo's 'Flags' installation in Central Park, and watched them wave as the town car taking me to Miracle House cut through the park. I now have a 'neighborhood' on the west side in Hell's Kitchen, where I've spent several weeks in recovery after surgery, and a 'neighborhood' on the upper east side, where my brother has a share and where I've spent lots of days and nights traveling to the city for chemo, or tests, or both. And of course, there's midtown, and the 'hood around the 53rd Street doctors' offices, and Bedpan Alley from 64th and 1st to 75th and York, where the main hospital and many of the satellite treatment offices are centered.

Sometime during the months of treatment and tests, I lost my city. I lost that special feeling I used to get when the train left Yonkers and the excitement that would make me smile when we entered the underground that is the staging area for the trains in Penn Station. I can't walk all day from neighborhood to neighborhood like I used to be able to do, and I can't just decide to hop a subway and spend a day in Chinatown, or at the museum of my choice. NYC became an obligation for awhile, a place I went to try to get better, a place where I always ended up feeling sick.

But today, things were different. Dr. C. removed a stent and pronounced me 'fine,' and said I could stop the meds he's had me on for two months. And when we came out of the doctor's office, into the hazy half-sunny humidity, I didn't just come out of a doctor's office. I came back into my city.

The kids were slamming around in the play park across the street. The bakery on the corner was calling my name. We cabbed back to Scott's (I felt good, but not good enough to walk home), and when we got back to Mad Ave., I took a walk up the avenue all the way past Dean and DeLuca. I went into Ventures, my favorite UES stationery store, and shopped. I ate some truffle samples and D&D, and bought sushi for lunch and a sandwich for my late train. I watched the other people window-shopping and hustling to their next 'thing' and realized I am one of them again, a New Yorker in love with my city.

NYC is not just the place I have to go to deal with being sick.
It's my town, and life is too damn short to let anyone or anything take that away, every again.

Acceptance and Hope...not mutually exclusive.

I've been exploring my acceptance of my diagnosis, and my plan to work on this recurrence of cancer. So many people seem to think that 'hope' means you must always be positive, every second of every day, that you will live through and beat cancer. It is inconceivable to them that you can accept the inevitability of your diagnosis and still conduct yourself with hope.

I heard something today, watching 'Oprah' which was a re-run of the Randy Pausch show. I'm not really much of a fan of Mehmet Oz, the cardiologist/MD that Oprah brings onto these shows, but he said something today about hope and about the physician's role in dealing with a terminal illness that makes so much sense, that allows hope and acceptance to co-exist peacefully. From the transcript of the show, which is available in the archives section at www.oprah.com:

"While they obviously want to heal their patients, in many cases, Dr. Oz says the physician's role is simply to help bring a sense of calm to the family. "The fascinating thing about the medical profession is the ancient healing rite was not to save lives. We couldn't do that that well until this century. It wasn't about doing a lot more than just bringing order to the situation," he says. ... "we have to offer hope, but hope's not about having a good outcome. Hope's about making sense of it all."

The end and the beginning....

16 to 11.
The boys I watched grow up on a lacrosse field, the boys who became young men who I am proud to know, got outrun and outgunned today by a style they'd never seen before and a team with a bigger 'A' game.

I couldn't be there.
I couldn't take a seven hour bus trip, spend three hours sitting on bleachers in a stadium, and then take another seven hour bus trip home.
I watched the whole thing on CSTV, the quick shots, the beautiful blocks, the effortless plays, the razor sharp slicing of the NYIT kids to the net. I watched the navy blue uniforms start their celebration with a minute to go, knowing that Lemoyne couldn't possibly pull ahead of them in a bare minute. I watched them swarm the field, the way that green uniforms had swarmed the field last year in Baltimore.

I wanted to tell them, all of them, how proud I am to have seen them play, seen them grow up. I looked at my liveSTRONG wristband and knew that four years ago, the idea that I'd ever see this day was just an idea, a dream.

Now, Beam is taller than I am, and when he hugs me I want to make every hug last until I can't breathe any more. It's the same with A.--when he hugs me, I never want to let go.

I want to tell them it's not about winning--it's about how you play the game.

Except I think tonight, for some of them looking at their last game, it might have been about winning. Someday, I hope they realize that just getting to play at that level is winning. Storming the field carrying the trophy is just a perk--the final score is that they showed up.

I am so proud to know them.

who survives cancer?

Today was the Komen Race for the Cure in my town, and 1000s of people (I'm not kidding, maybe 7000 people all together) ran in two separate walk/runs to raise money for the Susan G. Komen breast cancer foundation.

One thing that strikes me about races like this is that there is no blurry line at all among the participants between people who are running in celebration of someone else's life and struggle, and someone who is an actual breast cancer patient or survivor. If you have cancer, or had cancer, you are a survivor. If you haven't had cancer, you're a supporter. Simple, and straight to the point.

I belong to more than one online community that supports colorectal cancer patients, and in those communities, the line between the person who has cancer (the patient/survivor) and the person who supports them (family member or caregiver) gets awfully blurry sometimes. And while I know it isn't the best side of me, I can't help but get a little angry when someone who is a supporter or caregiver identifies him or her self as a 'survivor.'

Caregivers and supporters, the loved ones and friends of cancer patients, have a tough journey--I don't debate that. I've been a caregiver for loved ones with other illnesses, and I know that road. Perhaps because I know it well, it's easy for me to recognize how different that road is from the road I walk now, as a cancer patient and survivor.

A caregiver can never truly understand what a survivor deals with every day. I know some caregivers will hate that statement--but hear me out.

A caregiver can, given a respite, walk away from and be free of cancer world for awhile in a way that a patient/survivor never can. That's a respite denied to survivors. I see cancer in my mirror, in my body, in the way I feel and the things that hurt and the things that don't work the way they used to work, and I see that every minute of every day. There's never more than a minute of time when I'm able to 'forget' about cancer. There's no escaping it--cancer is part of me, part of my body, for the rest of my life. Even when I am lucky enough to be NED, the ravages of chemo and surgery, the wounds from the fight, are present in my body, things I have to face and deal with. Caregivers, unlike patients/survivors, can walk away.

Caregivers do not experience the drugs dripping into veins, the pre-surgical fears, the post-surgical pain and physical therapy in the same way that patients do. A patient/survivor has to make the decision, the conscious choice to put one foot in front of the other, to accept that day's treatment--and we have to make that choice every damn day of the fight. Caregivers may have to agonize with us as we make the choice, but they cannot make it for us. They cannot take on our fears or our pain. Those things are ours alone.

Today, I missed my nephew's graduation from college and most of his celebration BBQ. I had to pace myself, you see--I had to measure out the pain meds so that I'd be most awake (and able to drive there and back), while at the same time giving myself just enough pain coverage to be able to go to the party and hug everyone and tell Beam that I'm proud of him. And make him promise to eat next weekend on game day. And make his friends promise to be sure that he eats. And tell them all how proud I am to know them, to have watched them all grow into responsible young men.

I was in pain from the moment I got dressed, through every moment of driving there and back, for every second of standing and circulating and being in that room. Every hug was a treasure and torture. Every second was an effort of will. What caregiver can know that agony? And how dare they present themselves as if they could?

I am a patient. I am a survivor.
If you are a caregiver and a supporter of someone who has cancer, or any other illness, you are a special person, traveling a difficult road. But it is not the patient's road. It is not the survivor's road. Please do not present yourself as taking my journey. You cannot take my journey--I hope to the goddess that my journey never becomes yours. I wouldn't wish this trip on anybody.

27 days...and then back in the world!

How do you blog about 27 days in the hospital? I was admitted for a pre-op test on April 1 (a happy April Fool's Day colonoscopy.) April 2, the anesthesia guy came into my room early in the morning, and the last thing I really remember is 'scooch a little closer to me on the bed,' and then an epidural, and then I woke up in PACU, more than 12 hours later.

It was a cast of thousands surgery, a harder surgery that took more finesse and had a greater chance of failing than the colorectal surgeon initially wanted to do--but I had second thoughts after he explained the pelvic extenteration, and asked him instead to do the bladder-sparing surgery the urologist had described during my pre-op visit. And when it worked (yeah, it appears to have worked), his Fellow showed up in PACU saying, through the morphine has, 'I just wanted you to know that you still have a bladder.'

There were good things...and bad things. There were twists and turns. I was in hospital for 17 days, released for 5, and then readmitted for another 10 days after I spiked a fever. I saw a whole class of Fellows rotate out. I discovered all the variations of the hospital menu--why is it we can send a man to the moon, but we cannot serve decent hospital food? ;-) I met wonderful nurses and nurse assistants. I spent three days in pediatrics, and learned about the 'candy cart.' I made my doctors and nurses laugh, regularly (that's me, the last comic laying down.) I sipped my water and juice from paper cups with a straw that had a little paper umbrella on it (thanks, Cheryl!)

While I was in the hospital, the world moved on. I had a poetry reading in Syracuse, and won cash. I wrote in my little PDA, everything that happened, but I still have to sort it out. I got a lot of email, most of which got deleted.

And now, out for good (fingers crossed, still no fevers), all I want to do is be able to walk all the way from Madison Ave. to the Met, maybe even to the park.

I just want to be normal again.
But maybe that ship has sailed.

two days to the future

It's been two years since I've had to go through pre-op testing...but starting Monday, I get to relive it all over again.

New doctors.
A couple of doctors I've seen too many times before.

Pre-op tests are grueling. Appointment after appointment from the hospital to 53rd St. and back again--all the while wondering what will come next, what they are going to say, what procedures they have planned, and will you make it to the next doc's office on time. By the end of the day, I will need the St. Patrick's Day parade.

The cancer is now labeled 'locally advanced'...I think. I don't know for sure; I just have the substitute nurse's read of the scans I had during Westminster weekend. She said It's gone from a small targeted tumor at the original incision site to something that may involve my cervix and left ureter. The pre-op docs will clarify Monday and Tuesday; it's one of my big questions.

Meanwhile, if I think about it for too long, I won't be able to function at all. The surgery is scary enough. I don't want to do more chemo.

So, I get to meet with a gyn oncologist who is the director of reconstructive surgery in his department, and a radiation oncologist who is going to do interoperative radiation during the surgery, and a urologic oncologist who is going to try to preserve uretral and kidney function while they remove the tumor.

And I get to meet with some docs who already know me--the medical internist who clears me for surgery and Weiser, the colorectal surgeon who did my initial surgery. And I get to find out what I will look like after all of this is done.

I made six copies of my latest reports and my doctor contacts, surgical-chemo-rad history and contact information. I am packing light to do two days in NYC on the fast track as I bounce in and out of entrances at MSKCC, on and off the 6 train to 53rd St. I am a little scared.

But I am also here, today, doing what I want to do, and I've been given that chance for two years longer than anyone thought I'd have. Tonight I will sleep with my dogs and tomorrow I will write training programs while I'm on the late train to NYC.

And Monday, the docs will begin coloring in my near future.
Fingers crossed.

on living, and fulfilling your dreams

I routinely read several blogs, looking for content to feed to the Protein Power forum 'Media Watch.' Today, catching up on Mike Eadeses' blog, I found this entry for March 6: "A video we all need to internalize."

Randy Pausch has recurrent pancreatic cancer. This video is an abbreviation of the last lecture he gave before retiring from Carnegie Mellon University, which aired on the 'Oprah' show:

http://www.youtube.com/watch?v=_tIyt8oSLVs

This is the unabbreviated, 1 hour and 25 minute version:
http://video.google.com/videoplay?docid=362421849901825950&hl=en

and for those of you on slow connections, the written transcript:
http://download.srv.cs.cmu.edu/~pausch/Randy/pauschlastlecturetranscript.pdf

Finally, this is Pausch's update page (he should be discharged from the hospital sometime today or tomorrow, after resolving his latest health crisis.)
http://download.srv.cs.cmu.edu/~pausch/news/index.html

Why so many versions of the same story?
To be honest, because when people say 'think positive thoughts,' I wish this was what they meant.

Randy Pausch knows he's going to die. He gets it. He hates it, but he gets it. And having dealt with getting it, now he's getting on with living every minute that he has left.

I only hope that I can be that strong.

some days, normal would be good enough

Radiation is over.
Chemo is over.
The intestinal blockage that started in the middle of January seems to be resolved...as long as I don't eat anything stupid.

Now, if I could just count on waking up without being dizzy, or eating whatever I wanted, or being strong enough to do more than one thing on a weekend.

Walking to the uptown E train from Madison Square Garden, then transferring to the uptown 6, then walking six blocks to Sloan last weekend in the wind and cold had me breathing hard. Reversing it all and walking back to Hunter College to catch the downtown 6 and transfer to the downtown E nearly took me out. By the time I got back to the hotel, I needed real food, fast, or I would never have made it through group judging.

Yesterday, I took the dogs for a half mile walk.
Today, I am dizzy whenever I get off the couch.
Good thing I can write while flat on my back.

CRC Awareness versus Cancer awareness--and all those other ribbons!

I originally published this post on August 13, 2007, in The Semi-Colon Club yahoo! group.

--------------August 13, 2007--------------
Tony Snow.
Sharon Osbourne.
Barbara Barrie (from TV, movies and Broadway--who did a CRC awareness ad campaign that is up in our industrial health office to this day with the tagline "I almost died from embarrassment")
Tammy Faye Baker (deceased).
Leroy Sievers
Anne Rodgers Clark (dog show judge who frequently appeared in the panels judging dog shows on Animal Planet, deceased early 2007)
Farrah Fawcett (diagnosed last summer)
Darryl Strawberry.

There are lots of famous people who've had colon cancer...famous in their own right, not because they are someone's wife, husband, mother, father, sister or brother.

But that said, the face of colon cancer is staring back from the mirror everyday.
YOU are the one who can raise awareness, day by day, one person at a time.
It isn't about having a famous spokesperson; it's about BEING the spokesperson as only a survivor can be.

What Lance Armstrong did was raise cancer awareness. What he and LAF continue to do is challenge the people who decree what will and won't get funded, so that continuing research stays funded. THAT, we all need, regardless of diagnosis.

I wear a yellow wristband, not a blue one. I wear a blue ribbon on my ID lanyard at work. But most important, I speak up and out, where ever and when ever I can, where ever it's needed. I make guest appearances at support events.

I became a face of cancer for the people I come in contact with, I help make it real. I educate about the signs and symptoms in everything that I do. One person can touch hundreds of other people...or not. That part is the only choice we have in fighting this disease.

Colorectal Cancer Awareness

It's going to be March soon...another Colorectal Cancer Awareness month. I wrote this piece on March 3, 2007, and published it to The Semi-Colon Club, a yahoo! group. I will be just as glad to see March, 2008 as I was to see March, 2007, but unfortunately, this piece is still appropriate today, almost a year later:

--------March 3, 2007-------------------
It's March, and I'm glad to see another March. In March 2004, I knew that I was sick, that something was wrong--but I didn't know yet that I had Stage IV rectal cancer. So I watched all the CRC awareness messages and thought "well, whatever is happening, at least it isn't cancer."

Not so much. By April 20, about 8 weeks after my symptoms started, the doctors were getting suspicious. By April 30, they knew--and by May 3, I was in the first treatment of what would be 16 rounds of FULFOX + Avastin, and starting on a journey none of us wants to take.

And that brings me to the reason for THIS post.

Like many of you, I get calls to action and emails and all sorts of CRC advocacy awareness messages. I answer them...I advocate locally, I work with survivors, I participate to the extent that time and life permit. But for some reason, some marketing advisor somewhere seems to have convinced nearly every advocacy group to put forward the story of some young person who has lost his/her life or who is
valiantly fighting this disease--the slant being 'isn't it terrible that someone SO YOUNG should have to face this disease?'

Yes, it is. HOWEVER...

It is terrible that ANYone, of ANY age, married or single, parent or childless has to face, fight and maybe deal with dying from CRC. CRC is preventable and treatable, and I understand the need to emphasize that the prevention needs to start MUCH earlier than age 50, and be available to people regardless of age, sex or insurance coverage. But unfortunately, IMO, it does every CRC patient a disservice to only
focus on the tragedy of getting diagnosed and/or dying young. The TRAGEDY of having to fight and possibly die from a preventable disease doesn't discriminate based on age...and I'd like to ask all of us, in our advocacy, not to base our education approach on pity-based-on-age. If we aim our education at 'look at what happened to
this poor young person,' doesn't it follow that it's somehow LESS bad that it happened to someone older? That just fosters even more dangerous misconceptions!

It is not inherently MORE terrible or MORE tragic to be a patient in his/her 20s than it is to be a patient in his/her 30s, 40s, 50s, and on up. It is not inherently MORE terrible that the patient is parenting young kids (vs. parenting older kids, putting kids through college, or being childless but part of a loving family of siblings, neices, nephews, or being on the other end of the equation having to
care for aging parents.) It is NOT more terrible to become a patient at the beginning of your adult life than it is to be diagnosed at the height of your career, or diagnosed at the start of what you had hoped would be an active retirement.

I was 48, at a career high point, almost done putting my oldest nephew through college and gearing up to fund his younger brother's first year of school, trying to help my parents negotiate my father's dementia diagnosis, working with two promising dogs, and shifting gears financially so that I could retire betwee 52 and 55. My
diagnosis meant that I had to give up one of my dogs, lose out on all sorts of special family occasions when I was too ill to participate, give up the fast track I'd been on at my job, and in some cases leave my parents to sort out their own issues (not always in a good way.) Because of the costs of fighting CRC, retiring at 52, or evne 55, is now out of the question--if I live that long--unless I have to retire on disability (not really the retirement I've always planned...)

When against all odds, the surgeries and chemo that were supposed to help me manage the end of my life actually *worked* and the doc were able to put my CRC into remission, it was like getting a second shot at finishing some of the things I'd been unable to do before the diagnosis. I was able to take a tragedy and turn it around...at least for the moment. But my story is no less tragic than someone who was
diagnosed at an earlier age, or someone who was older, or someone who has kids living at home, or someone who never married. All of our stories are valid. None of them is more tragic than another--they are just different.

It is terrible that any of us had to become a patient, whenever and under whatever conditions it happened. But all of us have the ability to tell our stories, and make a difference, whatever those stories are.

So please, in our efforts to advocate and educate and gain support for our goals of increasing funding for CRC research and screenings, let's not keep reinforcing 'the tragedy of dying young.' The TRAGEDY is that ANY one has to become a CRC patient, and the TRAGEDY is that anyone of any age dies because diagnosis was too late, or treatments failed. We all need to tell THAT story...and stop focusing on the
heartbreak of the diagnosed young parent as the way to make a difference. The difference we can make as advocates is that CRC can affect ANYone, even thought it doesn't have to affect anyone...

I thought I'd try to get a picture of Madison and Casey into the blog. Casey is the red English Cocker, 13 years old Thanksgiving 2007, and Madison is the blue roan, 5 years old on Labor Day 2007.

I am the one in the glasses. :)

when we can't run away...

I know you can't physically 'run' away from cancer...but sometimes, you can choose to 'be' away. I give myself five minutes every morning to 'be' away, the ones in between the first alarm and the snooze buzzer. The alarms and buzzers remind me that I can't give up yet; those minutes in between are all mine.

Once I get out of bed, my time belongs to other things--to radiation and to chemo nausea; to the dogs; to work; to fighting to stay awake through meetings; to carrying on and pushing through. But those five minutes between the first alarm and the snooze buzzer--they are my chance to run away by just 'being' away, to escape to where ever I can take myself in my head.

I can't run from cancer...but in a weird symbiosis, neither can cancer run from what I and the docs are planning to do to it. We're both locked in the same gladiatrix cage--my body. And like Leroy Sievers posted the other day, when it finally takes me out, I hope someone can see that I beat the crap out of cancer in the process, that I gave cancer as tough a time as it gave me.

almost halfway there...

12 days of radiation and Xeloda down.
15 days left to go...but since I've got weekends off, on the calendar I'm halfway home.

Xeloda, on the surface, should make chemo easier. It's pills, not an infusion, so it's quick and easy like that. But the side effects (for me: tight abdomen, dry stools, heaviness in my chest when I do any kind of moving around, nausea, and then, today, diarrhea) never let you forget that you're still on chemo.

Compared to infusion chemo, radiation is a cakewalk (so far.) But I wonder what the next 15 treatments will bring, and I'm too superstitious to say out loud that dosing is going well.

Meanwhile, in Leroy Sievers' blog, he writes that his journey is getting tougher by the minutes. I wish him strength, and wellness, and pain-free time...and I am scared that eventually, that will be my road, too.