Life Out Loud!

Moving day

2009-07-05T14:37:00.004-04:00

I'm experimenting with Wordpress as a blogging platform, and have exported 'Life Out Loud' to its new WordPress location.

While I'm experimenting with WP, I won't be accepting comments here. Come visit!

--- UPDATE ---
I've officially settled all three of my blogs - Life Out Loud, my canning and preserving blog Kitchen Jam, and my dog training blog Dog Trainer's Log - in their new domains, completing my move to Wordpress.

Other posts here will eventually be taken off line. Meanwhile, please come visit each of the new sites - I'm having a lot of fun living life out loud at each of them!

A month without blogging...

2009-06-26T20:11:00.003-04:00

June was a full month.
Oh, I knew it was going to be busy--but I had no idea how busy it would be.
I had no idea that I'd end up here in the last days of the month with the worst cold I've had since cancer, slamming down Tropicana50 (the new reduced sugar OJ) and trying not to sneeze and cough at the same time!

At any rate, there were up-sides to this busy June.
Catered a lunch for four judges and assorted obedience trial staff--and got two requests for recipes.
Finally managed to make it to my very first Tear-Up the Adirondacks teardrop and tiny travel trailer rally--and really enjoyed camping in the Sunspot with two dogs and a cat...in the pouring rain. I can't wait to go out again!
I put my little SunSpot right in between the two trees that create the entrance to site #228:
(photo credit to Dave,
Traveled to Williamsburg VA for my uncle's memorial service, and reconnected with my aunt, cousins and their kids--some I'd never met and cousins I hadn't seen in 30 years.

And now I'm here nursing a cold and wondering if I'll be better in time for a wedding tomorrow. Fingers crossed.

More NY state anti-dog legislation in the Assembly this week

2009-05-31T23:15:00.006-04:00

Image via Wikipedia

Senator Aubertine's office advises that 10 bills of interest to dog owners are on the agenda for next week's (June 1-7) NY State Senate committmee meetings.

**Regarding "puppymills" **

S4961A Oppenheimer (same as A 7983A Paulin) Redefines "pet dealer" by REMOVING the exemption for residential/ hobby breeders and ADDING "any person who SELLS, OFFERS FOR SALE OR NEGOTIATES THE SALE OR PURCHASE OF ANIMALS BORN OR RAISED ON ANOTHER PREMISES;
(B) KEEPS ON HIS OR HER PREMISES MORE THAN FOUR INTACT FEMALE DOGS SIX MONTHS OF AGE OR OLDER FOR THE PURPOSE OF BREEDING SUCH DOGS"

The proposal also adds numerous requirements for care of animals by "pet dealers" including veterinary protocols, exercise, and more. Also requires pet dealers to authorize release of their records with breed registries and veterinarians to New York State or its agents.

link: http://assembly.state.ny.us/leg/?bn= A07983&sh=t
- - - -
S5392A Squadron (same as A7285 Paulin)
Prohibits ownership or custody of more than 50 intact dogs or cats

Allows for seizure of dogs or cats if any person or business "has in its care" more than 50 intact dogs or cats over the age of 4 months. Note that such animals may be sold off or killed by the impounding agency if security bond requirements are not met within five days.

link: http://assembly.state.ny.us/leg/?bn= A07285
Note: this bill is endorsed by HSUS
- - - -
Please join the Dog Federation of New York in opposing these bills and immediately write or phone NYS Agriculture Committee Chair Darrel Aubertine and the Agriculture committee members to express your concern regarding such extremist proposals. If enacted, both will devastate
lawful, humane pet breeders.

As always, be brief, be polite, mention the bill number and "oppose" in the subject line

Contact information:
Hon. Darrel Aubertine
Chair, NYS Senate Committee on Agriculture
903 Legislative Office Building
Albany, New York 12247
518-455-2761 (office) / 518-455-6946 (fax)
email: aubertin@senate.state.ny.us

committee members:

Sen. William Stachowski, Ph (518)455-2426, stachows@senate.state.ny.us

Sen. Velmanette Montgomery, Ph (518)455-3451, montgome@senate.state.ny.us

Sen. Neil Breslin, Ph (518)455-2225, breslin@senate.state.ny.us

Sen. David Valesky, Ph (518)455-2838, valesky@senate.state.ny.us

Sen. Catherine Young, Ph (518)455-3563 cyoung@senate.state.ny.us

Sen. James Seward, Ph (518)455-3131, seward@senate.state.ny.us

Sen. George Winner, Ph (518)455-2091, winner@senate.state.ny.us

Sen. Michael Ranzenhofer, Ph (518)455-3161, ranz@senate.state.ny.us

also copy or call:
Senate Majority Leader Malcolm Smith
Office of New York State Senator Malcolm A. Smith
909 Legislative Office Building
Albany, NY 12247
Tel: (518) 455-2701 / Fax: (518) 455-2816
Email: masmith@senate.state.ny.us

More on the journey to recovery with yoga

2009-05-31T18:03:00.005-04:00

I mentioned yesterday that, just out of surgery, I began exploring yoga to help me with balance, strength and endurance. It was my third abdominal surgery--which meant a healing incision from my navel to pubic bone along the original incision from my anterior perineal resection (APR) in 2005. I didn't want to do anything that would risk my $125K tummy tuck--but I had to get strong enough to at least be able to walk the dogs!

The waterwheel series by Kate Potter, one warmup from her FitTV series "Namaste Yoga," was a favorite practice that I still do at least once a week. All but one of the moves in the last few seconds of this very short video are things even someone who is just beginning surgical recovery can manage with modifications. And the first time I was able to bridge, and to fully extend my legs over my head, even for a few seconds, I knew I was on the right track to rebuilding my strength. Enjoy this excerpt; I'll post some additional favorites from Potter's videos in the next few days.

waterwheel excerpts with katepotteryoga.ca from kate potter yoga on Vimeo.

YogaBear, a not-for-profit corporation which links cancer survivors with yoga teachers and studios for free yoga classes, will be providing free introduction-to-yoga classes as part of National Cancer Survivor Day on June 7 in NYC at Rock & Run on the River, as well as in other NCS celebrations in San Francisco and Los Angeles. They're also looking for Reiki practicioners to help out on that day; you can contact them for more information at www.yogabear.org

This blog post is part of Zemanta's "Blogging For a Cause" campaign to raise awareness and funds for worthy causes that bloggers care about.

Online support for colon cancer patients and young survivors

2009-05-30T19:38:00.003-04:00

Image via Wikipedia

Colon cancer. Rectal cancer. Anal cancer.
They are the cancers with a high 'ick' factor, the cancers that embarass people, the cancers no one wants to talk about.
The screening guidelines for colorectal cancers (CRC) are based on the historical data that most people diagnosed with these cancers are over the age of 50. Due to this focus on an older patient population, it can be very difficult for patients under 50 to receive proactive, routine colonoscopies--even when they have a direct first-line (mom, dad, sibling) with a CRC diagnosis.

I was 48 years old when I was diagnosed with metastatic rectal cancer. The cancer had already spread to my liver, compromising as much as 85% of its function. I'd had at least five fecal occult blood tests (FOBTs) as part of health maintenance physicals; all were normal. I didn't know I had any kind of family history. And I didn't have any red-flag symptoms. My only symptom--which everyone took seriously--was sudden weight loss and wildly high liver enzymes which both were recorded within 8 weeks of my diagnosis. Had I waited until 50 for a screening colonoscopy, I'd be dead.

Because CRC education focuses on people 50 and over, there are almost no places where CRC survivors under 50 can go for support. In face-to-face support groups, I am often the youngest patient in the room, and almost always the only metastatic recurrent rectal cancer survivor.

But there is a place online which was started by and focuses on providing information and support for CRC survivors who are UNDER 50. The Colon Club and its online support forum Colon Talk work to provide a place of community for young CRC survivors to learn about their diagnosis, exchange treatment infomration, discuss side effects and share their cancer journeys. Anonymous 'guests' can participate in the discussion if they are concerned about the privacy of revealing that that are CRC patients. And the forum provides a healthy dose of the latest news in cutting edge treatments and improvements to the current standards.

If you are a CRC survivor of any age, finding a community to share your cancer journey which can also give you accurate CRC-specific treatment and side-effect information is very difficult. Finding a community which actively discusses survivorship issues unique to CRC patients diagnosed under the age of 50 is nearly impossible--unless you find yourself in The Colon Club.

This blog post is part of Zemanta's "Blogging For a Cause" campaign to raise awareness and funds for worthy causes that bloggers care about.

Yoga for Recovery: Check Out YogaBear

2009-05-30T16:01:00.009-04:00

Image of Yoga Bear

Last summer, while recovering from my third major abdominal surgery in four years, I re-discovered yoga via FitTV's Namaste Yoga, a multi-skill-level yoga practice created by Canadian Kate Potter.

I was too weak from the combination of surgical recovery and chemo to do much more than the warm-up/cool-down and meditation portions of each show. At first, I felt like I was in the CT scanner (breathe in--hold your breath--breathe out!) Concentrating on breathing while doing active poses was tough at first, but each day's small improvements intrigued me enough that I quickly sought out the entire Namaste series on DVD and added them to my collection. I'm still very much a yoga beginner, but I'm now able to do a physical yoga practice every day, and although my practices have to be short, some days I manage as long as 15 minutes of active poses. My daily yoga practice is centering, calming and energizing at the same time. It is a way to get my active life back, and get stronger from the inside out.

Today on Twitter, I found out about YogaBear, a not-for-profit corporation which links yoga teachers and yoga studios across the US with cancer survivors. Via Yoga Bear's program, this network of teachers offers cancer survivors free yoga classes. If you're a yoga studio, yoga teacher or cancer survivor, visit YogaBear to make the connection, find and renew your inner energy!

You can join several fundraisers to support YogaBear's efforts:
June 7 2009, National Cancer Survivor Day: catch YogaBear's free yoga classes in NYC at Rock & Run on the River (a celebration of cancer survivorship sponsored by Memorial Sloan Kettering Cancer Center). Free classes also available in LA and San Francisco
June 27: Yogapalooza will offer free public yoga classes in Atlanta GA, Austin TX, Cleveland OH, San Francisco CA and Washington DC.

Bloggers, until the end of the day on June 6, 2009, you can blog for a cause and spread the word about the benefits of yoga in improving recovery for cancer survivors. If you blog about your experience with yoga, and link back to YogaBear following these instructions, YogaBear.org could win $6K to support its efforts to provide yoga classes to cancer survivors!

This blog post is part of Zemanta's "Blogging For a Cause" campaign to raise awareness and funds for worthy causes that bloggers care about.

Breathe in. Hold your breath. Breathe out. I've had four CT scans since last summer, and now, when I hear those words, I think yoga practice--not scan anxiety! I decided to blog for a cause about Yoga Bear so that other cancer survivors can learn that there's more to the power of breathing than just getting the best possible CT scan picture. Namaste.

Fight Cancer: Mohawk Valley communities chosen to participate in nationwide lifestyle vs. cancer study

2009-05-25T10:41:00.008-04:00

Image by Andy Ciordia via Flickr

A story in today's Utica Observer-Dispatch announced that "The Mohawk Valley has been chosen to participate in the American Cancer Society’s nationwide Cancer Prevention Study 3, and ACS is seeking local people to enroll in the study. The study will examine lifestyle, environmental and genetic factors to determine which may contribute to or help prevent cancer."

Study participants must fit this profile, according to Peter Cittadino, ACS community executive director:
"All adults ages 30 to 65 who do not have a personal history of cancer are eligible to enroll. Participants must be willing to commit to a long-term study that, although it requires minimal involvement, will continue for about 20 years."

Earlier multi-community studies established the links between tobacco use and cancer, and between obesity and cancer.

Interested participants can register (a 20-30 min. process) at a table at the Utica Relay for Life on June 13-14 at Mohawk Valley Community College. People interested in participating in the study do not have to be RforL participants to sign up. The registration process involves a survey and some initial measurements on day of sign-up, including giving a blood sample.

Thanks to @foodmedic on Twitter for the heads-up about this study. Sometimes it takes a tweet from Texas to let Central New Yorkers know that they have an opportunity to help researchers make strides evaluating the connections between cancer, lifestyle and diet!

Comment to "Let's Talk About Cancer"

2009-05-18T20:08:00.005-04:00

I just left this comment on AC360, Anderson's Cooper's blog at CNN.
AC360 correspondent Randi Kaye blogged today and asked for comments in her post Let's Talk About Cancer.

-----------------This was my comment:--------------
‘Farrah’s Story’ was gritty, dramatic, and real.
I like her docs’ description of cancer as terrorists; that is exactly what Stage IV cancer feels like.

I was diagnosed with Stage IV rectal cancer and extensive mets to my liver, on April 30 2004. The gastro doc knew during the colonoscopy two days earlier, but diagnosis date is the first appointment with the oncologist.

I wasn’t one of those people who ignored years of symptoms–I only had symptoms for about 8 weeks, and they never included any bleeding or other red flags. My most glaring symptoms were sudden weight loss and sudden intolerance for dairy (so I knew something was wrong.) My routine bloodwork was off the charts, so the docs knew something was wrong. And everyone moved fast; everyone took me seriously. I was only 48. I’d had a decade of FOBTs as part of routine physicals and DREs every six months as part of well-woman exams–all negative. If I’d waited until I was 50 for a screening colonoscopy, I’d be dead now.

The oncologist gave me his last appointment of the day on a Friday. My sister-in-law was upset that after explaining his plan, he didn’t tell me the staging. I explained that if he was correct that the cancer was in my liver, then he didn’t need to say the stage out loud–I was stage IV. What my oncologist, a terrific doc and good friend did say was that because I was young and otherwise healthy, we might win several battles–but we wouldn’t win the war. In other words, he made clear from the beginning what I was up against, that this diagnosis was fatal. No false hope, no miracles. And while I’ve responded very very well to treatment, It’s still fatal. I can’t relax for one second, because believe me, cancer and its microscopic terrorist cells aren’t going to relax. No breaks, no holidays, no truces. Once you start dancing with Stage IV cancer, it’s a dance marathon and you can’t ever leave the floor without very careful planning!

I could have died every treatment in the beginning. But I didn’t die; I improved. Against all the odds, I responded very well to chemo, and I worked through the whole thing. After nine months of treatments every other week, I qualified for surgery to remove the primary rectal tumor and place a pump that would directly infuse chemo into my liver. After a year of those treatments, I qualified for liver resection. After each surgery, I went back to work and after the liver resection I was cancer free (NED) for 21 months. I had a recurrence diagnosed in Dec. 2007, was treated with radiation, chemo and another surgery in 2008, and have been back at work since Sept. 2008.

Last month, I marked the fifth anniversary of my diagnosis–five years of overall survival as a Stage IV, someone who’d had an original prognosis of 18-24 months. My success makes my local doctors happy (along with all of the docs in NYC, where I’m also treated), but some days it fills me with questions. Why did I make it–but not Leroy Sievers? Not Randy Pausch? Not my friend Brady who is right now in hospice only 3 years after his diagnosis? They call this survivors’ guilt, but it’s not all that. I work in preclinical research, and I want a reason, I want to know why. I want to understand better what we don’t know. Our newest treatments are gaining only months on a disease that steals years, and steals from far more people than the new treatments can help.

I’m again cancer free (NED), and this time we all hope it lasts longer than 21 months. The cancer hasn’t returned to my liver, and I’ve had enough chemo and radiation to last me several lifetimes. While I’ve been dancing with this cancer, I’ve lost over two dozen friends who weren’t so lucky with their chemos or their surgeries or their docs or their diagnoses. I have to tell newly diagnosed cancer buddies that my mileage with treatment may not be their mileage–that in cancer even more than gas consumption, mileage varies.

But in the end, you can either sit still and listen to the music, or dance. I will keep dancing, keep taking evasive action as long as the good days outnumber the bad ones. And when the bad days outnumber the good ones, I hope for the grace and sanity to recognize that and be in harmony with my expectations.

What I hate is the platitude that I might get hit by a bus. Yeah, I might–but the sign on the bus that kills me is a lot more likely to say ‘Cancer’ than ‘South Ave Connection.’ I am a Stage IV, and I am a long way from out of the woods yet, if I ever will be out of the woods.

So here’s a salute to you, Farrah, for being so incredibly brave to share your story so that people who don’t get to live this first-hand might understand. She said something amazing that really resonated with me: I’m great…and I’m fighting for my life. What are you fighting for?
----------------------

Good for Madison, not-so-good for me...

2009-04-30T23:01:00.003-04:00

Image via Wikipedia

It's national specialty week for the English Cocker Spaniel Club of America (ECSCA), and I'm here in Milan OH at the national specialty. On Monday, Madison made her agility debut in FAST (did the send successfully and racked up 35 points before we made the critical mistake of retaking the A-frame...oops!) But she stayed in the same ring with me, worked the whole course, and didn't check out to do her own thing once.

Then on Wednesday, she put together a lovely run in Rally Novice B, tied for first place with a 98 and ended up in second place (Rally ties are decided by course time.) I was really happy I've kept her in Novice B, on lead, to get as much experience showing her as possible and let her work the kinks out of the whole thinking-dog thing. Best of all, co-owner Lisa got to see M's run, and she was happy and impressed. All wonderful.

But on Tuesday, I learned through email, phone calls and txt messages that the R&D division of my group based in Syracuse will be closing no later than end of 2010. I'll just be 55, so if I can hold onto my job until then, I should be okay. If my job is eliminated before the move, I'll be a year short of 55--and lose about two-thirds of my pension.

On one hand, I was philosophical about the announcement meeting when I left on Friday--I couldn't change the meeting, so I might as well enjoy my national, a show I've been planning on for months.
Today, though, philosophy lost out to figuring out how I could survive.

It's hard to think that the company didn't do this on purpose--evaluate the ages of the people at the site, and then select the closing date and job eliminations so that they could avoid paying full pensions to those who would hit 55 within a couple months of the relocations.

And knowing that the job front is in upheaval at home sure makes it tough to keep my head in the game on a dog show vacation.

The new 1st dog--and the public's right to comment

2009-04-16T06:11:00.004-04:00

Image by mrs.McD via Flickr

The furor over Bo, the Portugese Water Dog puppy who has moved into the White House, continues in dog blogs across the internet. I read a number of dog blogs, but I've only permitted myself to comment on a couple, including Horst Hoefinger's posts at Dogster's For the Love of Dogs blog.

Yesterday, Hoefinger posted:

“However, when President, then Senator, Obama made the decision to announce at a public news conference that the family was looking at shelters it changes everything. Their private decision was no longer private, they invited the public in.”

The craziness of this statement takes everything I learned in journalism about public figures and the rights of the public and turns it on its ear. When I learned those things, the idea that the PUBLIC had a right-to-know was much more narrowly drawn than it is today--and the idea that the public had a right to vote on personal actions of public figures didn't even come up. Public opinion was important--but not definitive. Public figures could still preserve SOME privacy regarding solely private affairs. Hoefinger's post prompted my comment:

"Huh? How exactly? If the situation were reversed, would YOU let total strangers force your hand or narrow your choices in this decision? Would this furor even be happening if he’d promised the kids a gerbil or a goldfish?

"The US President is a public figure–which makes the public privy to a lot of stuff they normally wouldn’t know about the guy. Still, just because we are treated to a day-by-day of a lot of his moves doesn’t give us counselor status. Just because a public figure discusses a decision his family is considering does NOT ‘invite the public in’ to the decision-making process. We don’t get to vote on where he sends his kids to school, which color ties he picks…or what kind of family pet they choose and where that pet comes from.

"How incredibly presumptuous to think that public interest groups should even be invited into the discussion, much less that the president should listen to the viewpoints of thousands of strangers with their own agendas above the interests, needs and preferences of his own family regarding their family pet!"

In the previous day's blog, Hoefinger's post and the comments it generated (mainly) expressed their angst that the Obamas didn't select a shelter pet. But I'd like to highlight here one of the smartest comments I've seen about the entire discussion, from a person I've never met who signed herself PoundHoundMom. This comment was so sane that I'm going to quote it:

"My first dog was named Bo and I got him at a shelter. I loved him dearly and have missed him every day for nearly 4 years.

"That said … come on people, get over this Obama should have gotten a shelter dog. He promised his **daughters** a dog, not the entire country. This is a personal decision and for crying out loud, he’s the president of the United States. Exactly when is he supposed to go to a pound and pick out a dog? And think about it … even if he did choose shelter dog, can you imagine the people who would crawl out of the woodwork with lame ass stories about how it’s their dog?

"People, a dog has a home. Two little girls have their wish. Perhaps they will have many dogs in their lifetime and perhaps they’ll adopt from a shelter.

"But for now, two kids and a dog have begun a wonderful life together. Don’t take it away from them with stupid talk about how disappointed you are that the president didn’t adopt from a shelter."

He promised his daughters a dog, not the entire country. Man, I wish I'd said that! Very well done, PoundHoundMom.

For those who can't tell the difference--there are bits of info we receive each day which are FYIs, little things which we can use or disregard in our daily life but over which we have no decision-control-power. They will happen as noted without our input. There are also bits of info we receive which will not progress to the next stage unless we do something--vote, express an opinion, take action. When I shared with my parents that I'd bought a new car, I was giving them information so that they'd recognize me when I drove up in a green VW 412 instead of an old blue Monte Carlo. I wasn't asking them what they thought about VWs, 412s, or even whether I should buy a new car--I was merely giving them a bit of FYI about something that was going to happen regardless of their input.

President Obama was giving us all little FYIs in his announcements and updates about the choice of the family pet--this was something that was going to happen. It was not notice-of-need/right-to-vote, or even notice to express an opinion. Sure, the public expresses its opinions, all the time. But there's simply no right-to-vote--or even a legal right-to-comment--granted by the US Constitution regarding every little thing our President does, including his family's choice of a pet.

A blog? Well, that's different. We write, we put our bits of opinion and info out there, and if comments are permitted to the blog, then we're INVITING comment. So if Barack Obama blogged about his family's pet considerations, and asked for input, things would be different. Since I'm blogging about this, you're more than welcome to comment on *my* thoughts--as long as you're willing to leave your name and stand up for your opinions (no anonymous comments, please.)

It's high time we remember that an FYI from a public figure isn't an automatic invitation to comment on their actions, express our opinions or expect that we get a vote.

Comments to this blog

2009-04-13T12:17:00.007-04:00

My weekend blog posts have generated a number of comments.
However, all but one of them were anonymous.
While I'm really interested in opinions, I'm a firm believer in saying what you mean and standing up to be counted for what you say. I'm putting my opinions out there attached to a name and a profile. I ask that those who comment on my blog posts do the same.

Short story--Thanks for reading. Thanks even more if you've got something to say or share in return. All I ask is that you stand up and be counted by attaching a name to your comment.

My blog comments are set to 'moderate all' to control spamming, which means I see and have to approve/publish or reject each one.

Anonymous comments are not accepted--you have to give yourself a name. No exceptions...no matter how insightful, appropriate, interesting or valuable, anonymous comments will not be published. If you want to be part of the conversation, it's simply rude not to introduce yourself.

As long as you spell my name right (and include that link-back)...

2009-04-13T02:34:00.004-04:00

Yesterday, I blogged about the inappropriateness and intrusiveness of groups that think they are somehow entitled to a voice in the Obama family's selection of their family pet. And a couple of days ago, I blogged about an anti-pet-owner no-tail-docking NY state assembly amendment to the Agriculture and Markets bill called A07218.

Since those blog posts, five or six suspiciously animal-rights extremist profiles have shown up among my Twitter followers. I'm not trying to build a ginormous Twitter following out of everyone who clicks 'follow' on my account; I'm interested in content and good conversations--not sheer numbers. Often, I'll follow back--for awhile. But people whose tweets have a high noise -> signal ratio get unfollowed pretty quickly. And those who follow but don't have much of a profile or a website or any followers or updates of their own will get blocked. And for the record, animal rights activists will also get blocked from following me.

Then today, my blog about the new 1st puppy was quoted (and decried) by another blogger who calls himself AnimalRighter. By the goddess, I even got a blog link out of the man (for the record--never heard of him until his link-back showed up in my Google analytics summary.) Maybe he, too, is following Problogger's April exercise, "31 Days to a Better Blog." Darren Rouse, the author at Problogger.com, just included a blog improvement exercise that had participants link-back to another blog writing in their category.

So hey--as long as the blog spelled my name correctly ('Gaelen' is tough) AND it included a link back to my blog (which improves my online visibility) -- well, high-five, man! I'm not going to follow you on Twitter, nor let you follow me, and I'm for sure not going to subscribe to your blog--but I'm more than willing to be grateful for the extra boost to my site traffic.

Oh...and thanks for pointing out (by quoting it) the typo in my original upload. That's fixed now. ;)

Clinical Trials meet Social Media

2009-04-13T02:04:00.004-04:00

You have cancer, and someone suggests you should consider clinical trials. But you have NO idea how to find a clinical trial for your cancer, or for your stage of illness. Through trial and error, you discover clinicaltrials.gov but, to be honest, you're just overwhelmed when you search the site. How do you begin? How do you sort? Which trials are right for you? Then you realize that clinicaltrials.gov is only one of a couple of dozen sites that index clinical trials. You'll never be able to sort through all of them--and your doctor(s) want an answer about your treatment, now.

TrialX at http://trialx.org is moving the search for clinical trials onto social media sites like Twitter.

In this TrialX blog entry are the instructions you need to send a request (a QuTweet) to @trialx from your Twitter account. Use the format @trialx CT your health profile and send the qutweet as either a regular public update, or a private direct message (DM) to @trialx. Within a few minutes, you'll receive a targeted response with a tinyURL link to a list of clinical trials appropriate to your query.

For instance, my query was @trialx CT rectal cancer northeast US.
Within a minute, I received this response: @Gaelen2 Your Matching Clinical Trials http://tinyurl.com/link
At the tinyURL link, I was able to further refine the list with my age, sex, and stage information, search among the listed trials for phase of trial information, and get a general run-down of each of the trials on my targeted list (including acceptance and exclusion criteria.)

Useful--and cool. The TrialX Twitter app puts a high-powered clinical trial search engine at the fingertips of anyone with a Twitter account--and the main website offers additional search options. Best of all, it's all for free.

This is the kind of information that makes having a computer a good thing.

Choosing the 1st dog

2009-04-12T00:59:00.005-04:00

The subject of the Obamas' first family pet--the 1st dog--has gotten more press in the last four months and more newsbyte mentions than I can count. 'When is that puppy coming?' is the walkaway question that seems to pop up at least once a week. On April 11, several outlets in hard copy and online scooped the Washington Post story planned for April 12: the Obamas' have chosen a male six-month-old Portugese water dog. Senator Edward Kennedy is gifting the puppy to Malia and Sasha Obama.
Break in the 1st Dog story

Advocates for responsible dog ownership should be doing a happy dance; the Obamas did just about everything right in their search for a 1st dog. They did all of the things we have been teaching people to do when choosing a pet:
-- they did their research
-- they took their time
-- they scheduled when the dog would come into their lives (avoiding trips, vacations, holidays, etc.)
-- they asked friends for recommendations
-- they went to experienced dog owners for advice about breeds and breeders

But I fear that like any other presidential decision, the decision about the 1st dog will be seized upon by humaniacs who claim to represent the best interests of dogs. They'll ask why the Obamas didn't adopt a shelter dog, and they'll question their choice of a purebred. Behind all of those questions is their real agenda--why did the Obamas choose a dog at all.

Why? Because they wanted a dog, that's why! And it's high time that we stopped acting as if animal rights activists have the right to dictate to anyone, including the first family, what, where and how they should choose a new pet!

The Obamas did the right thing for their family, and they've taken a researched and responsible approach to their new relationship with a pet. Responsible dog owners and advocates out there, we need to reinforce that kind of approach to dog ownership. The Obamas need our support in this decision. Let's not permit anyone, including self-proclaimed 'animal rights' activists, to get away with attempts to make the first family feel guilty about their decision and their well-informed choice of the dog they feel is right for them.

It's long past time to stop apologizing for owning purebred dogs. Dog ownership advocates, let's help the Obamas by supporting their choice. Let's put animal rights activists--who do little for the welfare of domesticated animals, and are primarily focused on their own anti-pet-owning agendas--on notice: owning purebred dogs is a choice of which the Obamas, and everyone else who owns a purebred dog, can be proud.

NY State Assembly puts anti-tail docking amendment on its agenda

2009-04-04T12:25:00.003-04:00

Anti-tail docking legislation comes and goes in NY state; this year, it looks like the NY Assembly reps who want to attempt to pass this legislation have begun early and are making some headway.

The amendment currently in committee in the NY State Assembly is A07218, or Amd S365-a to the NY Agriculture and Markets Act. The
summary of A07218 and
full text of the amendment can be found at the NY State Assembly website. The amendment will make it a misdemeanor punishable by a $500 fine to dock the tails of dogs except by a licensed veterinarian, for medical or health reasons.

From the summary for the amendment:
"SUMMARY OF SPECIFIC PROVISIONS: Section 1. The agriculture and marketslaw is amended by adding a new section 365-a: Any person who cuts thetail of a dog for reasons other than to protect the life or health ofthe animal is guilty of a misdemeanor, punishable by a fine of not morethan five hundred dollars. Any person who shows or exhibits a dog whosetail has been docked or altered, at a show or other exhibition, is guilty of a misdemeanor, punishable as above. Any dog owner who is injuredor damaged by a violation of these provisions may institute a privateright of action in the supreme court of this state, to obtain redressfor such injury or violation. The provisions shall not apply to any dogor person who is the owner of any dog whose tail has been certified asdocked, cut or altered prior to August 1, 2009."

However, the language of this bill falls short in several areas.
-- it does not describe how an owner is to be 'certified' that his dog's tail was appropriate docked prior to the effective date of the amendment
-- it places the burden of proof that the dog's tail was appropriately docked on the person in possession of the dog; instead, the burden of proof should rest on the state to show that the dog was INappropriately tail-docked. Effectively, owners of dogs with docked tails are, under this amendment, guilty until they prove themselves innocent.
-- the language is unclear whether the proposed $500 fine is for each occurrence, or for every dog with a docked tail found in the person's possession

In the summary, the authors/sponsors of the bill list fiscal impact on the state as 'none.' However, this bill will dramatically affect people who come into the state of NY (and spend money in the communities they visit) to show and exhibit and trial their dogs in conformation, obedience, agility, tracking, terrier trial and field events. Whether you have an opinion about the appropriateness of tail-docking or not, this restriction has the potential to seriously impact tourist and visitor revenue in those communities state-wide who host dog show and trial competitions.

Responsible pet owners and dog fanciers should express their opposition to this amendment directly to the members of the NY State Assembly Agriculture committee (contact information below.) Put "Oppose A07218" in the subject line of any emails you send to the committee members, or write those words on the envelope of any hard-copy communication you direct to the committee members. Remember--be direct, stay on point, and stand up for your dogs and your right to provide safe and informed care to them.

In order to directly contact a NY State Senator or State Assemblyperson on the Agriculture committees, check your representation on this list of committee members taken from the American Dog Owners Association site:

NY State Assembly Agriculture Committee – 2009
Committee Chair - William Magee
Assembly District - 111th
Counties Represented – Madison, Oneida, Otsego
Albany Office – LOB 828
Albany, NY 12248
Telephone (Albany) – 518-455-5807
E-Mail – MageeW@assembly.state.ny.us

Marc Alessi
Assembly District – 1st
Counties Represented – Suffolk
Albany Office – LOB 419
Albany, NY 12248
Telephone (Albany) – 518-455 -5294
E-Mail – AlessiM@assembly.state.ny.us

George Amedor
Assembly District – 105th
Counties Represented – Montgomery, Schenedtady
Albany Office – LOB 426
Albany, NY 12248
Telephone (Albany) – 518-455-5197
E-Mail - AmedorG@assembly.state.ny.us

Michael Benedetto
Assembly District – 82nd
Counties Represented – Bronx
Albany Office – LOB 919
Albany, NY 12248
Telephone (Albany) - 518-455-5296
E-Mail – BenedeM@assembly.state.ny.us

Marc W. Butler
Assembly District – 117th
Counties Represented – Otsego, Herkimer, Fulton
Albany Office – LOB 318
Albany, NY 12248
Telephone (Albany) – 518-455-5393
E-Mail - ButlerM@assembly.state.ny.us

Clifford W. Crouch
Assembly District – 107th
Counties Represented – Chenango, Broome, Delaware, Ulster
Albany Office – LOB 450
Albany, NY 12248
Telephone (Albany) - 518-455-5741
E-Mail - CrouchC@assembly.state.ny.us

Francine Delmonte
Assembly District – 138th
Counties Represented – Niagara
Albany Office – LOB 553
Albany, NY 12248
Telephone (Albany) - 518-455-5284
E-Mail - DelMonF@assembly.state.ny.us

RoAnn M. Destito
Assembly District – 116th
Counties Represented – Oneida
Albany Office – LOB 621
Albany, NY 12248
Telephone (Albany) - 518-455-5454
E-Mail - DestitR@assembly.state.ny.us

Gary D. Finch
Assembly District – 123rd
Counties Represented – Broome, Tioga, Chenango, Cayuga, Cortland
Albany Office – LOB 320
Albany, NY 12248
Telephone (Albany) - 518-455-5878
E-Mail - FinchG@assembly.state.ny.us

Tim Gordon
Assembly District – 108th
Counties Represented – Columbia, Rensselaer, Greene, Albany
Albany Office – LOB 529
Albany, NY 12248
Telephone (Albany) - 518-455-5777
E-Mail - GordonT@assembly.state.ny.us

Aileen M. Gunther
Assembly District – 98th
Counties Represented – Orange, Sullivan
Albany Office – LOB 435
Albany, NY 12248
Telephone (Albany) - 518-455- 5355
E-Mail - GunthA@assembly.state.ny.us

Stephen Hawley
Assembly District – 139th
Counties Represented – Niagara, Orleans, Genesee, Monroe
Albany Office – LOB 531
Albany, NY 12248
Telephone (Albany) - 518-455-5811
E-Mail - HawleyS@assembly.state.ny.us

Barbara Lifton
Assembly District – 139th
Counties Represented – Cortland, Tompkins
Albany Office – LOB 555
Albany, NY 12248
Telephone (Albany) - 518-455-5444
E-Mail - LiftonB@assembly.state.ny.us

Peter D. Lopez
Assembly District – 127th
Counties Represented – Greene, Otsego, Delaware, Schoharie, Ulster, Columbia, Chenango
Albany Office – LOB 429
Albany, NY 12248
Telephone (Albany) - 518-455-5363
E-Mail - LopezP@assembly.state.ny.us

Alan Maisel
Assembly District – 59th
Counties Represented – Kings
Albany Office – LOB 528
Albany, NY 12248
Telephone (Albany) - 518-455-5211
E-Mail - MaiselA@assembly.state.ny.us

Margaret M. Markey
Assembly District – 30th
Counties Represented – Queens
Albany Office – LOB 654
Albany, NY 12248
Telephone (Albany) - 518-455-4755
E-Mail - MarkeyM@assembly.state.ny.us

John J. McEneny
Assembly District – 104th
Counties Represented – Albany
Albany Office – LOB 648
Albany, NY 12248
Telephone (Albany) - 518-455-4178
E-Mail - McEnenJ@assembly.state.ny.us

Bob Reilly
Assembly District – 109th
Counties Represented – Albany, Saratoga
Albany Office – LOB 452
Albany, NY 12248
Telephone (Albany) - 518-455-5931
E-Mail - ReillyR@assembly.state.ny.us

Peter M. Rivera
Assembly District – 76th
Counties Represented – Bronx
Albany Office – LOB 826
Albany, NY 12248
Telephone (Albany) - 518-455-5102
E-Mail - RiveraP@assembly.state.ny.us

Linda B. Rosenthal
Assembly District – 67th
Counties Represented – New York

NEW YORK STATE SENATE AGRICULTURE COMMITTEE
Darrel Aubertine - Chairman - email: aubertin@senate.state.ny.us
William Stachowski - stachows@senate.state.ny.us
Catharine Young - does not appear to have email - Albany fax is (518) 426-6905
Velmanette Montgomery - montgome@senate.state.ny.us
Neil Breslin - breslin@senate.state.ny.us
David Valesky – valesky@senate.state.ny.us
James Seward - does not appear to have email or a fax!
George Winner - does not appear to have email - Albany fax is (518) 426-6976
Michael Ranzenhofer - does not appear to have email or a fax!

Those STATE SENATORS without email addresses have a comment form on their web pages which can be accessed through the list of senators
http://www.senate.state.ny.us/senatehomepage.nsf/senators?OpenForm

Personal Inconvenient Truths

2009-04-03T02:39:00.004-04:00

Maybe global warming is Al Gore's inconvenient truth--but for me, inconvenient truth is much more personal and immediate. Lately, life seems to be a series of small PITs--personal inconvenient truths.

At 2:30 a.m., the current PIT is that old dogs are as much work as puppies. Maybe more.
Puppies need a strict schedule, but they can usually go 3-4 hours without interrupting my sleep.
Casey is 14 1/2, and his PIT is that he lately he can no longer sleep through the night. Heart dog of mine, he loves to share--and so I am awake, too.

2:30 a.m., when I should be storing up zzz's to make it through tomorrow--instead, after not quite waking enough to get him outside in time, I have cleaned a crate, cleaned up an old dog, cuddled Madison and shooed her outside (as long as we're up, we're ALL going to be up!) Then after settling them both back down again, the PIT that I can't go back to sleep kicks into its own gear.

I'm borderline wide awake, blogging when I should be sleeping. PIT--once awake to a certain level, my body will only fall asleep on its own time. Too many chemo infusions, too many years of speeding through the night on a mix of Decadron and 5FU (say that out loud--yeah, now you're getting it--5FU can be some nightmare drug.) Even meditating didn't let me relax and go back to sleep. I know I should, though--the second shift of old-dog restlessness will kick in about 4:35 a.m. And even if I'm spared more old-dog wake-up calls, the PIT of morning will be here sooner than later.

Okay. If I fold up the netbook, I think I can try to go back to sleep again. And with any luck, maybe I'll catch a couple more hours before the next personal inconvenient truth--morning.

You, too, can be part of Keurig nation

2009-03-23T21:51:00.003-04:00

Over at "What's that Smell," the accidental mommies blog, they've reviewed and are giving away a Keurig Platinum home single cup brewing system. Click the title of this post to see the accidental mommies' review and the contest information, and check out the Platinum brewer at http://www.keurig.com or the Keurig page for the Platinum brewer

I've got a Keurig--the small 'mini' brewer. But I'd be happy to upgrade for a free Platinum model. For me, the secret to surviving with a Keurig is a fill-your-own My K-cup, and good medium-grind medium or dark roast freshly ground coffee. I'm partial to Eight O'Clock Hazelnut, and to Paul D'Lima (nothin' like the hometown blend) but I've discovered some other favorites, too. The Green Mountain Hot Cocoa K-cups are a real treat...and only 5g carbs, much simpler than making my own cocoa.

So enter now, and enter often--the contest closes on April 3 2009 at noon CST.

Twitter twitter twitter...

2009-03-22T22:40:00.004-04:00

I'm addicted.
One username, one profile, one follow, one tweet from a friend --> another --> another --> doing searches and looking for people who like what I like and following and blocking and more following and reading blogs about how to better user Twitter - get the most out of Twitter - enjoy Twitter - add Twitter to your blog (look to the left...I added my Twitter updates to my blog.)

Wondering what everyone is twittering about? You'll never know until you visit:
http://twitter.com/

Using a doctor's real name online

2009-03-15T13:32:00.004-04:00

(This post is an edit of a reply I made today to a request on The Colon Club, asking me for the real name of the doc I refer to lovingly as "Dr. Personality." I replied to the original poster privately with the information s/he requested. The thread where this discussion occurred is linked above--just click on the title of this post.)

The original poster's question brings up another issue, and something that people really *do* need to take into consideration when posting on such a high traffic, heavily searched board. There are ramifications--some good, some bad, and some that could make you personally liable for court actions--when you post contact information, comments and 'reviews' of doctors and hospitals using the real name of the doctor and/or hospital.

Now and then, I slip and use a real name with a comment. Not often--I try to be careful. When I slip, I blame chemo brain and I'll stick to that story! If the question is just a simple 'who is your doc?' I'll answer that with a real name...but I'll usually answer privately. Most times, when I mention a doctor by name I try to be careful to just include a name, and not a review or even a comment (whether that review/comment would be good or bad.) I will post links to their research, or discuss their research in the abstract. I may mention certain identifying characteristics which, if someone wants to connect the dots, will allow them to come to the correct conclusion if they wonder who I'm writing about (such as the fact that my doc has a twin who is a colorectal surgeon... or that she was interviewed a few years ago by 'Real Simple' magazine.)

But I really try to avoid writing and posting public reviews of doctors or hospitals. I just don't think it's professional (I do get paid for my writing), nor do I consider it appropriate or courteous as a patient, to post using real names in a support forum venue. I know that people are looking for information--but there are better ways to get it. Go to the medical centers' websites, and do searches for doctors at the hospitals you're considering--the places which currently employ them. You'll find out all sorts of things. Meanwhile, if you want to know about my docs, PM me...and I'll answer any question you have privately.

Every post on a public, searchable forum puts that entire post, including any real names included, into search engine and private computer caches every single time that post is read, every time that thread is refreshed...and that stuff stays in those caches for a looong time. I try to follow the same rules for public posts that I follow for business email--I don't ever want to post something that I wouldn't want to read aloud in front of my grandmother, or in front of the person involved. When I post, I ask myself if using the person's real name would or could:
-- cause another person harm or perceived harm
-- negatively affect the reputation of a person or organization (unless I'm clearly writing political opinion or editorial, which I occasionally do on my blog--and where me playing nice isn't part of the rules)
-- attach my name and/or my picture to a statement that a person could perceive as harmful to his/her personal or professional reputation, and therefore put me personally at risk
-- attach my name and/or my picture to something that will show up, long after I die, in a Google search of someone else's name

I've used the online screen name 'Gaelen' for going on 20 years now. I run forums as Gaelen, write as Gaelen, blog as Gaelen...the nickname or screen name is associated with me. In fact, the name of my cookbook-in-progress is 'Notes from Gaelen's Kitchen.' Are there links to my real name and picture online? Um...yeah. But most of them are still at least one or two degrees of separation away from my posts as Gaelen...in other words, if you search for Gaelen, you'll get some references and links, sooner or later, to my real name and picture. But so far, none of them show up on the first page of a casual search--and yeah, I check. ;-)

For those of you who've been reading here for awhile, you'll know that my picture (yeah--that's really me, taken the summer before dx) only became my avatar a few days ago. I thought long and hard before putting that avatar up here, because I do not link my real picture with my real name on high traffic boards. Among other reasons, it's just not personally smart for a woman who lives alone to have her picture, ner name and her location in search engines all over the net. So although my current avatar appears elsewhere on the 'net, it doesn't show up with cancer information that relates directly back to my doctors' names. I will likely switch it to something else pretty soon--to keep at least the illusion of a couple of degrees of separation from Gaelen and the internet, and the real world in which my docs and I interact.

I'd like to extend the same courtesy to my doctors and to the places where I'm treated. When I like their work--and when I don't--they deserve to hear that directly from me. They don't deserve to find out what a patient thinks of his/her latest doc visit, good OR bad, when they take a look at the first page of their name searches on Google (or anywhere else for that matter...) They especially don't deserve to have that information about our visits come up when OTHER patients Google their names.

Dr. Personality is a brilliant, hard-@ssed scientist-doctor who is also my NYC medical oncologist. She's not sweet and cuddly--but I don't need sweet and cuddly in a white coat when I'm in the fight of my life--I can get plenty of 'sweet and cuddly' from the red coats and blue roan coats with four legs who slept on my bed last night. ;) Dr. Bright Eyes (aka Dr. Sparkly Blue Eyes) and Dr. Birkenstocks are my colorectal and urologic surgeons, respectively. If you ever meet any of them, you'll know exACTly why I gave them those nicknames and you'll agree that the nicknames fit them perfectly. I've gotten emails and PMs after a post with those nicknames asking "is your doc so-and-so, because he or she is my doc, too." Their patients who encounter those posts will recognize those docs by their nicknames--but people who aren't their patients will (hopefully) not automatically have negative issues with those doctors, nor will those doctors get negative fallout because of my posts.

I give most of my docs nicknames to give me the freedom to relate the steps of my treatment without putting either them or myself permanently into a Google search engine using our real names. Just in case my grandmothers (rest their souls) can read this in their afterlives... ;-) My docs repect their end of doctor-patient confidentiality...and they have a right to expect the same courtesy from me as their patient.

And that's why I choose not to post to most forums using my real name, and why I do not often refer to my doctors by their real names. YMMV--but remember, your grandmother--or your doctor--may be reading your post!

When Casey has a good day ...

2009-03-14T22:46:00.005-04:00

Now and then I see it in your tail--
first a steady wag, and then it vibrates with purpose.
Now and then your gait is deliberate, and your eyes are bright.
Your goal is in sharp focus,
and I know that for a few minutes
you've found your tennis ball again.
--------------

Casey had three good days in a row last week.
He took Madison's bone to chew whenever she left it unattended, slept all night long, and tail in full wagging vibration, he brought me his tennis ball.

More important--when I tossed the ball across the living room, Casey remembered that tennis balls exist for him to chase, to bounce upon, to snatch and catch and race back to me so that I can throw the tennis ball again. And when he was chasing the tennis ball, he stayed on task all the way through, instead of losing his tennis ball and forgetting that we were playing.

I love it when his tail wags, his eyes shine, and he remembers how to play.

Traveling dogs (and a cat)

2009-02-22T08:22:00.003-05:00

Every trip I make, I remind myself that at heart, I aspire to one-bag travel.

As I wheel my 20” suitcase through Penn Station, slip through a subway turnstile while trying to keep backpack on left shoulder, or toss into the truck my duffel packed for a dog show weekend—along with my briefcase, a purse, and something disposable holding last-minute commuter food—I wonder again if one-bag travel is a goal I'll ever attain.

Sometimes I pack late. Sometimes I don't think things through. Sometimes I don't really know what weather or events to expect—or know, too well, that at my destination I'll require everything from shorts to a parka to business casual khakis. In those cases, even in one suitcase, I end up packing a couple pieces I don't need or don't use.

But one bag is the plan—for me. What gets packed for the traveling animal entourage is another matter (and, often, at least three more bags!)

Each of my English cockers travels with three crates—one for the truck, one for the hotel and one for the show site. All of the crates live in the bed of the truck, so at least i don't have to pack and unpack them after every trip. These days, 14-year-old Casey shares a springer-size hotel crate with my younger bitch, Madison, because the old dog is more likely to sleep through the night in the same crate with his spotted cuddle-partner. They ride in the truck in separate hard-sided airline kennels; the show and motel crates are wire crates and soft-sided nylon crates which fold up suitcase-style. I bring a container of dry food, one gallon (or two) of bottled water, and an ancient sling backpack stuffed with assorted collars and leashes, bowls, buckets, ear covers (snoods), the grooming and first aid kits, my obedience, rally and agility rulebooks and a toy or two. The dogs wear buckle collars with tags, and their emergency ID kits are snapped to whichever crate they're in at the moment.

With everyone retired from the breed ring, I rarely travel with a grooming table, expen or full tackbox these days. My on-the-go grooming kit (pin and slicker brushes, comb, stripper, straight and thinning scissors, stone, toenail clipper and a small bottle of shampoo for emergencies) can take care of most road trips and fits in a small toiletry kit that fits in the sling backpack.

Then, there's the towel bag—a tote filled with crate blankets, two sheets to cover the bed in the motel, and dog coats. And there's a backpack which lives in the truck bed and is packed with paper products that come in handy at dog shows: a sharp knife, a cutting board, paper plates and cups, plastic cutlery, salt and pepper, spare coffee filters. Already, I'm at three bags for two dogs—without counting a small cooler for snacks, my purse or my briefcase!

Then, last trip, Churro joined the entourage. Churro is the dogs' brand new cat, a big orange tabby who is still a bit too much of an ex-barn cat to be trusted over a long weekend in unsupervised contact with things like vertical blinds. Churro has his own crates—and a litter pan, food container and special food/water bowls. Luckily, he can share the bottled water and his harness fits into the dog's backpack!

I used to travel with five dogs, all their gear, all my gear and a dog show booth setup. I somehow fit a small mixed breed, a Gordon setter and three English Springer spaniels into five crates in a Chevy Citation hatchback (with extra crates for the hotel and show site, a grooming table, tackbox, and a set of utility articles!)

These days, I seem to bring less stuff—but not less work—although I'm only traveling with with two cockers and a cat!

For those of you who aspire, as I do, to one-bag travel, check out: http://www.onebag.com/

Orlando, Florida

2009-02-17T10:58:00.000-05:00

I just got back from NYC--scans are good, I'm in remission.
None of the people at the DWAA meeting managed to do bodily harm to anyone (in my presence, at least...)
The Pet Writer's Conference was great, and I made some contacts for a couple of articles.

And then, I took a vacation. I went to Orlando, my first time ever in Florida.
Here in CNY, it was around 25 degrees.
On the balcony of the condo my brother rented for our family vacation, it was 75 degrees, and I could feel the breezes all day long. I could watch great blue herons and runner ducks skate over the lagoon just past the sidewalk, and have a cup of coffee and answer email.

No doctors, no appointments, no scans. No dogs to exercise or train (or cuddle, and I did miss that.) But lots of time with my brother Jeff, sister-in-law Ann, niece Ashlyn and nephew Connor, and my sister Lin and brother-in-law Dan. Easy time. No-commitments time.

I think I could have spent another month having morning coffee on that balcony.
I am definitely going back to Florida, and sunshine, and no-commitments vacations, as soon as possible.

My first Tin Can Tourists rally

2008-09-14T13:15:00.005-04:00

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...

2008-09-10T15:39:00.006-04:00

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

2008-08-29T06:06:00.002-04:00

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...

2008-08-16T19:40:00.003-04:00

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

2008-08-14T14:16:00.008-04:00

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.

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

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

2008-08-06T12:07:00.005-04:00

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

2008-08-05T04:51:00.006-04:00

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

2008-07-15T12:29:00.002-04:00

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.

2008-07-12T18:56:00.003-04:00

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...

2008-06-16T13:30:00.003-04:00

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.

2008-06-10T17:05:00.003-04:00

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....

2008-05-25T23:06:00.002-04:00

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?

2008-05-18T19:39:00.003-04:00

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!

2008-05-08T13:37:00.003-04:00

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

2008-03-15T20:59:00.002-04:00

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

2008-03-09T16:55:00.003-04:00

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

2008-02-17T16:24:00.002-05:00

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!

2008-02-06T01:19:00.000-05:00

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

2008-02-06T01:09:00.000-05:00

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...

2008-01-27T13:21:00.000-05:00

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...

2008-01-13T19:27:00.000-05:00

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...

2008-01-12T13:29:00.000-05:00

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.

This version of normal.

2007-12-23T14:16:00.000-05:00

Tomorrow, I start 28 radiation and Xeloda treatments.
Today is my last 'normal' day for awhile. Or maybe not...maybe the effects of radiation and Xeloda will be minimal. No way of knowing until I just do it.

This is so different from the last time, when I went from diagnosis to port placement to chemo in a week, and barely had a minute to catch my breath in between. This feels measured, and finite...and hopefully it won't have drastic effects on my sctivities of daily life.

We shall see.

But for know, I know this as 'normal,' and I'm reluctant to fill up today with stuff, even though I've got a full to-do list. There are presents to wrap, gift cards to buy, laundry to do, trash to move outside, dogs I should probably groom rather than wait until next weekend. I don't want to do any of it. I want to just relax awhile, and enjoy the last few hours of this version of normal.

And let tomorrow's version of normal take over, tomorrow. ;)

The little things that will twist your mind...

2007-12-20T22:25:00.000-05:00

Twenty years I've been working for a pharmaceutical company, doing pre-clinical drug safety research.
Twenty years--a major part of that time building cancer drugs.

Tonight, I just spent 20 minutes on the phone with some telephone tech answering the phone at the company mail-order pharmacy, feeding her the information off my insurance cards and the lists of my doctors and their phone numbers--justifying, to this woman I've never met, why I deserve to have them waive their arbitrary rule that they alone must fill my Xeloda prescription.

I told them that I'm stage IV, that my treatment (radiation + Xeloda) begins on Monday, that there's no way that I'd be able to get any drugs which they tried to mail-order to me.

And they put me on hold.

And then, after my local pharmacy was closed, at 9:04 p.m., the telephone tech came back on and told me that yes, because of this special circumstance, out of the goodness of their hearts they would approve this ONE-TIME exception and authorize the local pharmacy to dispense a 30-day supply so that can start my radiation + Xeloda treatment on Monday.

On Christmas Eve.

Everything else I have to go through and put up with, and now I'm justifying my oncologist's treatment plan to a pharmacy tech in some phone center in Florida, because my pharmaceutical company has contracted for the worst prescription coverage in the western world.

And now tomorrow, I have to call the pharmacy back and they have to resubmit the scrip.

Hell, I probably should have called Elliot Siegal direct.

when the other shoe drops...

2007-12-15T13:01:00.000-05:00

Stage IV cancer is not a straight line, it's not predictable.
Remission isn't forever.
Part of me knows that and accepts that.
And part of me also knew that something was wrong, that there's no way I could lose five pounds in five weeks unless IT was back.

So I wasn't really surprised when Dr. Personality came in on Dec. 3 and told me that there was a new mass and that I needed new tests and to consult with Weiser again. Finally, after three and half years, she remembered that I don't actually live in NYC, but was relieved that I could take a couple of days for extra testing (too bad, no teaching in NBR this trip.)

Nothing lights up on the PET scan except a small tumor, 4cm x 2.5cm, in the area of the original tumor resection. It's pressing on and occluding the left ureter--so I needed a stent placed, and a radiation oncology consult, and next week I start the mapping for radiation which begins on (Merry Christmas to me) Christmas Eve. Then after radiation (6 weeks or 25-28 treatments, whichever comes first), a new PET and Weiser will re-evaluate me for surgery.

Other people go to Florida in February; I take disability.
One more time.

The prescription drug feedback loop

2007-11-19T21:56:00.000-05:00

Lately, I've come up against a lot of angst and wringing of hands about advertising of drugs, prescription drugs in general, overprescription, the high costs of medicines. Usually, the finger is pointed at big pharma for all the harm done.
But you know, I don't think so.

Some of the angst I’m reading is just a little skewed. So here's a heretical viewpoint or six:
Not all generics ARE created equal.
Not all new drugs have a counterpart–-yet.
Not all drugs should be prescribed at the level they are currently used.
Pretty much no ad, good or bad, was created by the company who made the drug.
Docs don't always have control over the drugs that are dispensed, but insurance companies do.
New drugs are expensive, but I don't know why some of them cost what they do.

Mike Eades, a bariatric specialist I respect, blogged recently that ‘Any medication you see advertised on television has a less expensive counterpart out there.’ Well, that's not always quite the case. There may be a similar drug out there…and there may NOT be, yet. NDAs (new drug applications) are for a drug which somehow, some way, differs in mechanism of action or effect or is tolerable to different conditions or effective in lower or less frequent doses. There has to actually be a difference for it to qualify as an NDA, and get approved. Sometimes, that difference is the thing that makes taking that med possible for a percentage of the population. And if you really need the med, that difference can be the world.

This was all part of a blog discussing some particularly bad drug company advertising, that laid the blame for the bad ads on the drug companies. My response?

Drug companies don’t make the ads–-they buy them (or rather, the ideas for them.)
Advertising companies make the ads. Drug companies just approve the ads and the campaigns, but most of the time, they are babes in the woods when it comes to judging good work. Richard Jarvik for Lipitor, or 'prostate–-a growing problem' or Cialis ads are all a creative department idea (or failing). It ain’t the science selling that stuff. It’s the people the company pays to think up a way to market it, who sell it to the suits in the front offices of the drug company’s marketing group.

Sure, there are ad and marketing types in every drug company. But they serve mainly as translators to the creatives in the outside world who speak their own language and have their own sets of three-letter-acronyms. Internal media outsources the heavy lifting of creating the campaigns to the bona fide ad agencies. I used to be one of the ad agency people who had to come up with the marketing plan packages and the slogans and then sell it to the suits from whatever company we were pitching. Bibles, durable medical equipment, insurance, industrial washing machines, charitable giving programs–-describe your product and it was my job to sell it. I had to sell it whether I thought it was stupid or not–-which is one reason I am no longer in advertising! If the resulting ad is stupid or insulting, it’s because the drug company bought it, but not because they dreamed it up. So error in judgement for buying it? yes. Bad creation? well, um, no.

One very good series of pharma ads, IMO, is the one promoting pharmaceutical research and Glaxo Smith Kline. It shows researchers, and why they chose their area of research, but none of them promote a specific drug. It reminds me why I enjoyed creating the kind of advertising that makes you think (yes–-there is such a thing!) And it makes me proud to have spent 14 years doing preclin R&D drug safety research, and to now be making that work possible for others. It rings true in the context of the scientists I work with, and it feels real. Hats off to the company that created the campaign, and to GSK for not messing with a good idea.

The first rule of being a smart creative is to never show a client a bad idea-–because even if it’s presented in the context of five or six other amazing ideas, the client will embrace the bad idea every time. EVERY time. So shame on whatever ad company thought up the idea of talking mucus to promote the decongestant Mucinex…but I can’t really blame the drug company for buying it. It’s exactly the kind of cute crap suits from stiff companies love. It was my job as a creative to make sure that kind of bad choice wasn’t even presented to them so they wouldn’t make fools of themselves by choosing it. And clearly, someone in the ad agency dropped the ball the day talking mucus sounded plausible!

I really like the story of Mucinex, an over the counter expectorant/decongestant, which used to be available as the generic prescription guaifenisen and has always been available in liquid form as plain old unglamorous Robitussin expectorant cough syrup and its generic counterparts. The plain expectorant type of Mucinex, which I take daily because I live in the rain-soaked northeast (instead of somewhere like Tuscon), contains 600mg of guaifenisen–just like the old scrip stuff. The company that marketed the prescription version (which cost me about $6 for 60 tabs, versus the 50 cents per tab Mucinex costs), somehow failed to renew the right paperwork and lost the right to sell it about five years ago. Enter Mucinex, at approximately 8 times the price of the prescription drug. After about 12 months on the market, I began to see an unbranded tablet form of the drug that is relabeled and sold on the internet and in Walmart–but it’s a lower dose per tab…and the price for two tabs is just about the price for the branded med…so no payoff in going generic there. The generic is not equal to the branded product–you have to take more of it to get the same effect. And yes, in that case, the company is clearly protecting an investment in name and marketing $$$ with direct to the consumer drug costs.

But, to take this in another direction–-I belong to an employer-sponsored health insurance plan. In those programs, patients frequently HAVE to purchase the generic version of a prescription. The insurance company makes that decision–not the doc, and not the patient. The insurance company can deny coverage of any price in excess of the generic’s cost, and they do. Been there, paid the bills to prove it. On a doctor's scrip pad is a little box at the bottom, with the phrase ‘dispense as written if box is checked’ or something similar over the top. The doc must specifically X that box in order for the patient to get the branded version when an exact equivalent generic is available. Otherwise, the dispensing pharmacy can give out the generic–-per the insurance company branch of the healthcare industry. It would be the insurance companies and health care plans and pharmacies scoring on that one--not the docs, nor the ad agencies, and most days, not the patients, either.

One of my pharmacy benefits is that I am eligible for any med my company manufactures free of charge-–if it can be dispensed by a pharmacy and self-administered. The thing is, we make cancer drugs, so there aren’t a lot of meds my company makes that you’d WANT to be sick enough to have to take. And none of my cancer infusion meds qualified as being able to be self-administered, so no freebies there. But our employee prescription benefit, regardless of the health insurance plan chosen, mandates use of a specific mail order pharmacy…and any scrip for what the plan classifies a maintenance med MUST be written for 90 days, with three 90 day renewals, and filled by mail for a preset minimum copay (which can go up if the med costs more.) If the employee chooses to use the local bricks/mortar pharmacy, all fills after the 3rd one are charged 100% to the employee at the current retail price for the drug. And the prescription benefit for drugs that can’t be filled mail order or for those first three fills while a doc is trying to figure out what med/dose works for you, is a minimum $10 copayment, or 10% of the retail cost, whichever is *greater.* If the doc does a dispense-as-written 90-day scrip and you try to fill it mail order, it will be bounced back to the doc to rewrite if a generic is available. So I can’t just go in and ask to try Ambien unless I’m willing to pay the retail cost of the drug at my local pharmacy. Trust me, THAT gets old fast.

Anti-emetic pre-meds for chemo infusions were $60 for six pills (two infusions), and the low molecular weight injectable heparin I take daily is $100/month for 30 doses (charges for needles and syringes are extra, of course.) Neither med was eligible for mail order, so I had to pay 10% of retail (since it was greater than $10.) I pay for the sharps I need for the heparin out of pocket…it’s 30 cents a setup from my local pharmacist (who thinks it’s possible I have the worst prescription benefit he’s ever seen), versus 28 cents a setup if I were to get them on a maintenance scrip from the mail order pharmacy. The group scoring on this arrangement is not the employees…it’s the mail order pharmacy and the underwriter guaranteeing the policy for the company. I don’t think the company is scoring that well, either…but they wanted to set an example as part of the pharmaceutical industry. My *mother* gets her meds cheaper than I do…and I subsidize her medicare part D plan with my taxes. When she and I are taking the same med (thankfully, that doesn’t happen often, but it did briefly with a couple meds during chemo), I was effectively paying twice…once through the nose for my meds, and once via taxes for hers.

And no, I cannot justify the prices charged at retail for new drugs…even though I do know the average time to approval (it used to be 15 years; I think certain drugs, when fast-tracked, can be brought in under 8 years) and I do know the costs associated with developing a new meds. I am one of those costs, after all (IT support, and before that, the staff that actually compounded the drugs and did the preclin testing). But that is a feedback loop that is bigger than an ad campaign that prompts a viewer to ask a doc about X medication.

I think Saturday Night Live could do a lot with that material…or any of the commercial spoof sites. But I’m not sure the drug companies are the only ones responsible for the ads. I’ve learned first hand that what insurance will approve and what they mandate about scrips plays a huge part in what a doc will write, and what a pharmacy will fill.

As always…to paraphrase Arsenio Hall, it's all something to make you go ‘hmmm’.

And then someone notices...

2007-10-17T23:35:00.000-04:00

Every since my first cancer surgery, the one in Feb. 2005, I've had a permanent colostomy. Sometimes, it's a pain in the butt (ok, I couldn't resist.) Sometimes, I forget and eat something that causes me discomfort, and sometimes stress gets the better of me which makes managing the ostomy a bit trickier. But overall, I seem to have gone through most of the last two+ years without feeling a huge impact on my life from having an ostomy.

Don't get me wrong--I am always conscious of it, and a little self-conscious. I can never go anywhere without knowing what the bathroom conditions are going to be like, without my emergency replacement kit, without being prepared. Some nights, I go straight home because the ostomy is uncomfortable or the stoma or hernia around it is painful. It impacts my life...but it doesn't derail it the way that cancer sometimes has.

When we were camping a few weeks ago, a friend from work made the comment that most of the people in the building had no idea I had an ostomy. Somehow, I just couldn't believe that could be true. They *all* know I had cancer, had surgeries, and that 'working from home' at certain times was a euphemism for 'having a chemo treatment.' And then today, a guy who had an emergency ileostomy 6 weeks ago after a bout of diverticulitis came back, and we talked...and it blew me away that he had no idea that I have an ostomy, and that I understood what he was going through and what he has to look forward to in the next few weeks when they reverse it.

Hmmm.
Maybe the thing that is so obvious to me ISN'T that obvious to the rest of the world.
Goddess knows my self-image could use all the boosts it can find...

as if it was yesterday...

2007-10-08T23:12:00.000-04:00

Tonight, I watched Kris Carr's self-portrait movie "Crazy Sexy Cancer."
I've seen it before, but only part. Tonight I caught the whole thing.

She was diagnosed on Valentine's Day, 2004, and she was chasing normal at the same time I was in MSKCC for the first operation. I watched the part where she's walking through Central Park with her new boyfriend, looking at Christo's orange flag installation and marveling. I got to drive home during that exhibit, but I was too weak to see it
any closer than the windows of the town car as it drove through the park. Watching Kris walk through the flags, watching her rediscover that life could be beautiful again...

It's like it just happened yesterday, like the first surgery was just yesterday.

Camping at Sampson State park, site 232, Wine Country 2007

2007-10-06T08:41:00.002-04:00

This post was supposed to include a shot from the lake, looking up toward the dog tent and the trailer and the road. 2 days of rain...and 3 days of the most glorious Indian summer weather possible. 5 days camping, completely unplugged, enjoying my friends and my dogs and a wonderful show circuit. Plus, Madison earned her rally novice title, outdoors on wet grass. Ch. Kabree Mad About you, RN!

2007-09-21T17:59:00.001-04:00

Okay, just going to vent for a second...

I've been having back pain, intermittent and hard to pin down, since January.I've been on pain meds more or less since May...ibuprofen, which Dr. Personality upgraded to Celebrex in August.

When it hurts, it's mind-numbing. I literally cannot focus on anything else. It's a tearing pain that extends down my left leg and leaves my toes and sometimes foot tingling. Not good symptoms when you're also worried that the meds you're on might cause a stroke.

I was referred to an orthopedist who works with my oncologist, and they've ruled out cancer mets (whew!) and put me on physical therapy...which I've been doing faithfully since August. In fact, so faithfully that my insurance, which only covers 20 visits per year, is about to run out so I'll have to pay for it myself. But my PT can only go so far. If they try to add more reps or new exercises, I am racked up for at least a day, maybe longer, and have to take Lyrica to get through the pain (which gets me through the pain mainly by putting me to sleep.)

So finally, I asked for and they ordered an MRI; had it Tuesday.

It's not just the spondylolisthesis I already knew was there...a separation between L4 and L5 which they saw on the several CTs they've ordered since January. Tuesday's MRI shows an actual disc herniation between L5 and S1, apparently a rather large one. The extra weight I'm carrying in my abdomen and the pressure from the post-surgical hernias aren't helping.

I know it's not the end of the world and in the course of all the stuff I've been through in the last three years, this is not the worst thing by a long shot. But I am really, really discouraged right now. Funny how that works...because this morning I was excited that I seemed to feel better!
I know that the PT is working, albeit very slowly. This week I was able to wear pants I haven't been able to wear since the colostomy surgery. And I was actually excited about that...I've lost a good inch and a half from my waist and hips doing the breathing and abdominal contraction exercises which are the only ones I can stand to do every day. And I counted and it's been 10 days since I had to take any supplemental pain meds. So PT is working...but the way they described the herniation, it's pretty serious. It could compromise my bowel or bladder function if I'm not very careful. Great. Just exactly what I was looking forward to...not!

Jeez...some days I wonder why wasn't the stroke enough? Why wasn't cancer enough? What the @#$%! else can possibly go wrong?!? There's that old saying, 'if I'd known I was going to live this long, I'd have taken better care of myself.'

Oh, wait...I DID take better care of myself. Look how far *that* got me.

Ah, well, I know this will pass. But right now, I am really feeling like I'm taking two steps forward and then two steps back every time I turn around!
There...now I feel better. ;)

My Sunline Sun Spot

2007-08-12T19:31:00.001-04:00

Well, I never went to OH to pick up a Yoder Toter--because a local RV shop had a 1980 Sunline Sun Spot available that is turning into a LOT of fun.
Here are some pictures of the trailer on the first weekend when I picked it up. It's 4 1/2 feet wide x 10 feet long, and about 54 inches tall inside...a little bigger than a teardrop, but still only weighs 600 lbs. Mine probably weighs less because most of the galley cabinetry and the two inner seats that folded out to become a bed are gone.

On top are some pictures of the 'cleaned up' Sunspot, with new curtains, a cot/bed experiment, and a couple of galley accessories. Slowly but surely, it's getting there--and the late 80s red paisley tapestry curtains are gone gone gone!

cast iron find at The Christmas Tree Shop

2007-08-12T10:24:00.000-04:00

Last weekend, while looking for 'stuff' for the Sunspot, I found this folding 24cm cast iron grill pan at The Christmas Tree Shop for $4. It's got a removeable bamboo and steel handle, and a low rim--perfect for a small serving of bacon or a quick quesadilla or burger. I seasoned it this weekend and made its first 'meal' -- splurged on some of the good organic pepper bacon from the farmer's market. This morning, I made a pork steak and grilled fennel. It's a very cool little grill pan, perfect for camping!

2007-04-30T22:33:00.000-04:00

I've finally found the teardrop camper that I want, and now all I need is the time to actually go to Ohio to get it!

It's a Yoder Toter...double doors, finely crafted Amish woodworking, aluminum exterior with painted fenders. I don't know how much it will cost, but the teardrop fund is flush, and I'm ready. I'm worth it.

2006-02-18T08:40:00.000-05:00

A picture is supposed to be worth a thousand words. This is me, taken in June, 2003.

saying what we mean, meaning what we say

2005-12-08T00:27:00.000-05:00

Sometimes it's tough to get a family to say what it means, and mean what it says.

My family is the encylcopedia illustration of this. :)

So and so is being 'difficult.' That is English for 'we're fighting.' Or 'we're not talking.'
'You're keeping me out of your life' is English for 'I need to know everything.'
Umm...no, you don't.

'I don't know what's wrong with your father; he spent the last two days in bed' is English for 'he's being difficult and I don't feel like trying to figure out why.' It also means he has no items on his agenda that he feels compelled to get out of bed to do...but that's another issue.

Family. Sometimes you need 'em. Sometimes you can't live with 'em.

And sometimes they delight you. A. was selected for the draft for professional lacrosse, Chicago's team. And he put his name in to go to New Orleans to help rebuild franchises there. Steppin' out and steppin' up. I'm proud of him and excited for him.

Speaking of saying what you mean...Dr. P. has a new research fellow. He told me today that they've been discussing my case with the team (again) and when she arrived, I got a whole 25 seconds today. Dr. P is presenting me (again) at the team meeting on Thursday, to be considered for further surgery. Didn't actually ask me if I wanted further surgery...but hey, I have to keep remembering that it's all about her. And even though I was short of foie gras and whipped cream, her indulgences according to the 'Real Simple' interview, she was a little human this time.

Found out later that she's going on vacation over the holidays, won't be back until my next visit in the first week of January. So she must be the type who relaxes BEFORE the vacation. Anyway, it was nice to hear that it's a progress report of sorts, even if there probably won't be an answer until next January.

This 'survivorship' thing is a lot harder than it looks. And I do say what I mean, and mean what I say. Guess I'll just have to start blaming that on being direct (again) and not pass it off on the 'I'm dying; I can say anthing' that's been working for the last two years.

Cold and flu season

2005-11-22T18:58:00.000-05:00

It started on Sunday, a little scratchy throat. I blamed it on the hair and the dust at the dog show.
But now it's Tuesday, and it's trying to be a full-blown cold. Stuffy head, fatigue, muscle weakness, dizziness. It had better not be the flu.

Erik wanted me to have a flu shot, but Dr. Personality insisted that it had to be in one of my 'off' weeks. Now I'm heading into treatment tomorrow with an upper respiratory infection trying to beat me, no flu shot on board, and I can't take anything. Kirshner is not going to be happy; I don't even know if he'll be able to treat me.

There's no fever (so far), so maybe he'll say it's a go for treatment. I don't want to get off schedule. I don't want a cold OR the flu. I haven't had either for three years, and now, suddenly, here I am all stuffed up. I haven't needed to take a sick day for chemo since I started back to work in July, but today I called in and said I'd be working from home, confining my germs to me alone.

These are the times that having cancer is hardest...can't take anything, just have to tough it out with turkey soup and peppermint tea and lots of water and rest. Okay, cold...bring it on. I'm ready for you.

Casey, CD NA RE

2005-11-20T19:06:00.000-05:00

Casey earned his RE (Rally Excellent) title on Thursday, and got his first RAE (Rally Advanced Combined) leg today. He came within a minute of qualifying in Open on Friday, too...that CDX (Companion Dog Excellent) leg is so close.

The only problem is that I don't think he can handle three classes (Open obedience, Rally ExB and Rally AdvB) in one day, for four days in a row. I know I can't handle it...my brain was mush after working him in Open and I blew both of his first RAE legs on Friday and Saturday because I couldn't concentrate.

So from now on, it's the two rally classes, or open...not both on the same day. It will take longer that way, but when I limit us to the two rally classes, he passes and I'm not exhausted. When I try to do all three, I make silly mistakes...miss a station, turn and 'pull' him out of the honor, etc. He can get this title easily, if I just do my part.

God, those letter look good after his name, though. And he had so much fun being at a dog show again. I had fun being at a dog show again...maybe for the first time in a long time.

Dr. Personality

2005-11-13T19:40:00.000-05:00

I suppose I should say a few words about Dr. Personality.

She actually talked to me last week during my visit. Cycle #10, and she was actually friendly, interested even, in how I was doing and was there anything new. Very different from October's visit, when she told me that the magic cure for gaining weight was to "eat less and exercise more."

Gee, Doc, thanks for clearing that up; I'd have never gotten to that wisdom on my own two feet. I suppose I should be grateful that she's the only doctor for the last year who's thought a five-foot-tall woman shouldn't be gaining weight, shouldn't weigh 200 lbs. She has absolutely no idea what I know about nutrition, or that I've been moderating a weight-loss BBS since 2002. But why take time to understand your patient? Maybe that's a coping mechanism.

But anyhow, last week she was in a human place. She was happy that my bloodwork was good, my BP was normal, and my side effects are comparatively non-existent. I wonder if that will mean that she sends three pages of comments to Kirshner in her report. I still can't figure out how she could write him two pages, single spaced. She hasn't said that many words to me in our entire history.

Or maybe she's just more human for the early morning appointments.

Or maybe I am just getting better at remembering that "It's not about me...it's all about her."

What are the odds?

2005-05-05T21:43:00.000-04:00

My oldest nephews' aunt has leukemia, diagnosed last week. A friend, one of their neighbors who used to babysit them and who I know from the dog clubs, was just diagnosed with breast cancer.

This gives the kids a bilateral family history of cancer. Their aunt is at least 10 years younger than I am, early 40s at the oldest. Their mom's intestinal troubles continue, and she'll need regular colonoscopies for the the rest of her life--not just because of my disease, but because of her own illness. The family friend is my age. Why, suddenly, is cancer cropping up among us as frequently as the common cold?

talking out loud...

2005-05-03T23:10:00.000-04:00

My father has the beginning stages of Alzheimer's disease.

He's not going to be one of those sweet older patients with dementia. He's difficult to manage, combative, argumentative--all the least attractive parts of his personality seem to be surfacing, and to the tenth power.

Tonight he called me just for someone to talk to. I have to work very hard to remember that he's operating from a diseased portion of his brain, that he's not responsible for the things he does or the choices he makes or the words he says.

But I don't know how to deal with his need to talk to someone, and my need to be in a quiet space, especially when those needs happen at the same time. He needs to talk out loud to someone. I need quiet space around me. I'm not comfortable making my needs come first all the time--but I can't be what he needs right now either.

And meanwhile, he just continues talking out loud...and tomorrow he won't remember what we said, or even that we had a conversation.

Cautious optimism...

2005-05-02T22:34:00.000-04:00

The NYC oncologist ran CT scans last Tuesday before my latest treatment--and the scans show significant tumor reduction in my liver. It's maybe the first genuinely unreservedly positive thing that's happened since surgery in February. For a minute I feel like it's realistic to be hopeful, more realistic than its been since my diagnosis. For a minute I feel myself taking chances on planning, thinking about a future that may actually happen. For a minute...

A year ago Saturday I was sitting in Kirshner's office, listening to him tell me that I had a fatal disease, and that in my case, it likely *would* be fatal. A year ago yesterday I was in surgery for a mediport, so that I could start chemo on May 3--15 rounds of hand-to-hand combat with oxaliplatin, leucovorin, 5-FU and Avastin. The good news from the scans knocked the melancholy feelings I have about the anniversary of my diagnosis right out of the headlines in my head, made that anniversary just a footnote on the bottom of the back page for the day.

Maybe the good news can keep those headlines in 8point type on the bottom of the backpage for a couple more days. I'd really like to keep feeling this positive.

The view from the bleachers...

2005-04-23T21:03:00.001-04:00

Bri plays lacrosse at Lemoyne, and even though it was cold and rainy, I didn't want to miss another home game. I've already missed two...one in the rain a few weeks ago, and one two weeks ago on a truly beautiful Saturday. Unfortunately, that beautiful day was only three days after a treatment, and my blood pressure was too low and unpredicatable. I could barely get out of bed. So I decided to brave the run, planning to show up for the second half and the tailgate after.

The first quarter ran very long, and I got there in the middle of the 2nd quarter. It was great to see everyone, and at first I didn't really notice the cold. No rain, but it got colder the longer I watched. There's some cold-holding penetrating chill factor built into aluminum bleachers, I swear. So at the end of the game, after I brought in the brownies for the tailgate, when Bri said he had to go I was more than willing to sit in my warm truck and drive him up to his dorm.

Its so odd how many of the kids seem to know me after only meeting me once or twice--they're not even West Genny kids, but others I've met during the odd dinner or lunch with Bri. Bri's roommate Brad gave me a hug, and Chris Moore and I had this complete conversation on the merits of owning technical rainwear in CNY. They are a very bonded group, and I hope that Bri has found a comfortable place with all of them. I want Bri to enjoy Lemoyne, to settle into it and take as much out of it as A. has taken out of Springfield. I want him to succeed, I want for him all the best things. And I show up and sit on those aluminum chill rails masquerading as bleachers, even when he doesn't play, so that he'll know that someone is always there--always thinking good for him, always supporting him. I want him to understand that, and sometimes when we're alone like on the truck ride up to his dorm, I know that he gets all those good thoughts, and feels me holding them for him. My biggest fear is knowing that I won't be here for him for as long as he's going to need someone in his corner.

But I hope that he understands that I'm always watching him, even when I'm not in those bleachers.

my brain in black and white

2005-04-21T22:50:00.000-04:00

It's time I started to write this all down, what's happening to me, what's happening in my head. If I don't start putting things in writing, no one will ever see all the thoughts that have been coursing through my head, no one will ever understand.

My to-do list is yards long, and I keep losing track with each new treatment of what's been done, what still needs doing. A few days after a treatment, I try to organize things, but I can't stay focused on one project long enough to finish it. It took me all afternoon to pull my videos and beanie babies and put them boxes for Saturday's garage sale.

The chemo brain is much different with this treatment regimen than it was with the first one. Days 1-5 after a systemic treatment, I can barely think my way out of an open paper bag. Then the lack of focus seems to kick in and out randomly for the next 10 days. Then I'm back to no focus at all. And I'm not sure yet whether the chemo brain effects are worse after FUDR plus irinotecan, or after irinotecan alone.

BTW, you get FUDR and irinotecan for advanced colorectal cancer, specifically metastatized to the liver. I was diagnosed at the end of April, 2004. Prior to this regimen, I took 15 cycles of Avastin/Leucovorin/5-FU--until the doctors at Memorial Sloan Kettering decided that maybe they could chance operating on my liver and primary tumor. David Crosby drank his liver to death, and he got a whole new one. I did all the right things, but a liver transplant is not an option in advanced CRC due to the high levels of recurrence. Saying that 'life is not fair' doesn't even begin to describe this.