Tag Archive for Colorectal cancer

Stage IV rectal cancer: 7 years and 9 months in…

December 26, 2011 cancer, survivorship 9 comments

Where's the "strong" in LiveStrong?

Normally, I’m more upbeat than this post. But today I sat (or rather, laid) here reading a support forum post about “hope for Stage IV” from a caregiver, where the patient is less than a year out from diagnosis…overjoyed to be converted from inoperative to potentially eligible for surgery.

I remember that feeling. I was excited, too.

I read a post from a 27 year old Stage IV colon cancer patient two weeks out from colon/liver resection surgery, who wants to know about her fertility options. She wants to bear a child – even though, even if she could, her chances of living long enough to raise that child to adulthood are still slim and none.

What I found, after my visit to the support forums, was a crystallization of thoughts that have been floating in and out of the pain meds all weekend. Someone needs to say this out loud. I guess it might as well be me. Read more

My national edition Colorectal Cancer column for Examiner.com

April 24, 2011 cancer, the 'net, writing 2 comments

I am a freelance writer. One of my steady clients is Examiner.com, a news and information website. No, it’s neither the Washington DC Examiner nor the San Francisco Examiner (both hard-copy newspaper outlets that also have online sites.) But Examiner.com, the DC Examiner and SF Examiner are all owned by the same guy, billionaire Philip Anshutz.

Until last month I wrote two columns (Syracuse Dog Training and Syracuse Food.) My strategy for Examiner.com was to add a third, national edition column as soon as I moved into full-time freelancing. The only hard part was picking a topic. I looked at several things, but finally realized that one of the big holes in their content was colorectal cancer. No local examiners, and nobody writing about CRC at the national level. I wasn’t sure about being identified, once again, as Cancer Girl. But ultimately, I went for it.

Timing is everything, and the timing for this is hard right now. But at the end of March, as I was struggling through my first two chemo treatments, I got the word that I’ve been given the new Colorectal Cancer column in the national edition of Examiner.com.

This column gives me the opportunity to put colorectal cancer information, education, awareness and events in front of a completely different audience and demographic than typically reads patient support sites. I can write about Alex Stratta, the colon cancer survivor and chef-testant competing in Bravo’s current run of Top Chef Masters. I can bring in people who need to know more about colorectal cancer before it’s time for their first colonoscopy. I can write about patient freebies like Colonoscopy for Dummies.

I can bridge the gaps between the various advocacy and support organizations, putting all of their messages on the same page. I can publicize resources that current patients need, and on a national level increase awareness about local events that promote CRC awareness. I can plug  screening and legislative advocacy in every column using the host of public service videos on YouTube.

I hope that Colorectal Cancer can put CRC information in front of casual internet searchers who may not otherwise be exposed to it. Please come check it out. Tell your friends, bookmark it and share it in your networks. And if you have topics you’d like me to cover, please drop me a comment either here or there. It will let me continue to advocate for CRC awareness even when my mobility is compromised, and (in the interests of full disclosure), Examiner.com is one of my freelance writing clients. So I do get paid, and my freelancing income does help pay for those scanning trips to NYC. So click early…and click often.

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Cancer girl, like it or not

February 20, 2011 cancer, survivorship 9 comments
This image shows a picture taken from a typica...

Image via Wikipedia

When you write about surviving cancer for seven years, you become known among other bloggers – branded, if you will – as one of the “cancer girls.” And while I love the readers who discovered me and who keep reading, I don’t have any illusions about what keywords make them find my blog.

People don’t come here (at least, not very often) to read about my adventures camping in my tiny travel travel, or my dog stories, or tales of my latest recipe – even though I’ve published a few of those things here. People find this blog and come to read it (and stay to comment and read more) because I write about survivorship, about what it’s like to have rectal cancer.

But as I approached three years of remission, begun in April 2007 after surgery for my first recurrence, I really didn’t want to continue to be branded as one of the “cancer girls.” There is more to me than cancer, or even than survivorship. Politics, for instance, intrigue me – especially the politics of strip-it-away spending cuts some Republicans and Tea Partiers would have us all believe is responsible government.

The problem with Stage IV rectal cancer is that as the patient, how much time you spend as one of the cancer girls (or guys) isn’t entirely or at all within your control.

Last weekend, I had the scan that would have cemented me firmly into three years of remission. Instead, it cemented me firmly in the group of recurrent stage IV patients – two, possibly three small mets in my right lung, a questionable mesenteric and para-aortic lymph node, and scariest of all – possible bone mets in my sacral/tailbone area, where I’ve already had close to my lifetime dose of radiation.

Reluctantly I am back in the midst of active survivorship – a PET and an bone scan need to be scheduled and evaluated, chemo regimens need to be weighed and compared. More doctors’ appointments, at the point in time when I was just enjoying having one or two a month. Cancer girl, chemo girl once again.

Before I start treatment, I have things to do. Loose ends need tying up. I’m fostering a special needs retired racing greyhound who has seizures – I won’t be able to handle him on chemo, so he needs a new foster home. I need to get the faucet in the downstairs bathroom and the garbage disposal in the kitchen repaired before chemo hits. I have non-refundable plane tickets to Call on Congress 2011, where I planned to lobby for cancer research funding…and I am NOT going to CoC on chemo, so treatment will have to wait until that is over.

But I’m truly not sure I’m ready or willing to take up the “cancer girl” brand again. This time it’s going to be different. I’m going to get some pain control in place, now. I’m going to request a handicapped tag so there won’t be anymore sins committed in parking lots. I’m going to investigate how to file for Social Security Disability Income.

And I’m going to focus on taking care of me.

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Catching up…

April 16, 2010 dogs, research, survivorship 5 comments
East River Esplanade, June 2009 - 05
Image by Ed Yourdon via Flickr

It’s been an amazing and crazy three weeks.

I spent Easter in NYC, in a lovely little apartment a block away from the East River and the walking paths that go from the Upper East Side down to the 59th St. Bridge. On the train down to the city, I opened an email from my friend Monica Burns, telling me that Quail Run Rumor Has It RN NA NAJ (Reuben) had died in his agility partner Bruce Burns’ arms on April 1st.

Reu had been just five years old when I’d been diagnosed, and after surgery was ruled out and I was put on chemo forever, I knew I had to re-home him with someone who could manage his activity level and give him the active life I’d trained him to enjoy. I had placed Reu with Bruce and Monica in October, 2004, at a pretty low point in my cancer diagnosis. They loved our crazy Gordon setter like he’d been their forever. He was their boy, and I kept my distance while he got acclimated. I saw him a few months later at the first AKC Rally trials of 2005, and that fall and the next during the Wine Country circuit, we had a small reunion. Each time I saw our boy my heart was proud that he’d adjusted so well. Each time I turned on my work laptop and saw the magnificent portrait of Reu posing in a field next to a pond, my pride in my setter cried a little.

I was supposed to die first. So I did what I needed to do to make sure he had a great home. But me dying first didn’t quite work out – Reu died three weeks before his 11th birthday.

The Monday after Easter, I discovered that my scans were, once again, ‘unremarkable.’ Who knew I’d ever grow up to want to be unremarkable? But there it is – and I’ve got the paperwork to prove it. Better still (I think) is that Dr. Personality put me on six-month checkups.

NYC every six months? I’ve been traveling to NYC for scans and check-ups at least every four months (or three months or two months) for the last five years. NYC is part of my world, so much a part of my life that I always wonder how to answer that NY state income tax question about maintaining a residence in New York City. Now, I get to go to NYC when I want to go – not just to have a CT scan.

Being unremarkable means that I’m going to look at something I think I can do – even if it does over-book me for awhile. I’ve applied to sit as one of the citizen reviewers on the Department of Defense Peer-Reviewed Research Committee for colorectal cancer research. I don’t know if I’ll get in, but I want to try.

Then, today, I found out that a friend from the Colon Club – Mary Catherine Dykhouse, who posted as “justsing” – passed away due to complications of advanced stage IV rectal cancer. She is survived by her husband Joe, her daughters and a son. She was 46 years old. She lived about 2 1/2 years after her diagnosis. MC and I didn’t always agree on approach, but we always respected each other.

What I find myself asking in my out-loud voice is why I’m breaking the rules, coloring outside the lines of expected survival, outliving yet another person who was diagnosed with this disease after my own dx in 2004, but who will not break through his or her own survival curve.

Lobbying in D.C. made me realize how effective I could be at getting people to listen, and act. The DoD peer-reviewed research committee sounds like it’s something I’m supposed to do, if I get the opportunity. Maybe this is why I outlived my wonderful, crazy Gordon setter. Maybe I can make a difference…and speak for MC, for Carolyn, for Janine, for Piotr, for everyone who isn’t alive any longer to speak for themselves.

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March awareness of everything but blue

March 4, 2010 cancer, survivorship 6 comments

March is colorectal cancer awareness month. Leading up to each March I go back and forth in forum conversations with people who want this year to be the year the world experiences some sort of magical CRC awareness miracle. While awareness is growing, there is of course no miracle. There are only faces – mine, yours, someone you met at your kid’s school or your neighbor or a relative.

Friday March 5 is ‘Dress in Blue Day’ across the US, when people dress in blue to show their solidarity with CRC advocates in raising awareness. There are a couple of cool videos of me out on the ‘net, dressed in blue and filmed in early 2009, telling my survivor story to Colon Cancer News. And I’ll wear blue again this Friday. Later this month, I’ll participate in C3′s 2010 Call on Congress, meeting with my senators and representative to discuss bills which provide screening for colon and rectal cancers. It’s the first year since diagnosis that I don’t have either scans or surgeries or recovery at this time, the first year I’ve ever gotten the chance to go. I’m excited and a little nervous and I can’t wait.

But today, I saw a message on Twitter about someone sponsoring a giveaway this week to benefit the Komen foundation and breast cancer advocacy. And me, the person who’s always maintained that advocacy and science don’t care what color awareness ribbon you wear, found myself thinking “By the goddess – you’ve already got October! March is colorectal cancer’s month!”

Before the hate mail starts – I’ve got breasts (both of them.) I do regular self-exams and have had mammograms on schedule (more or less) ever since I turned 40 (skipped them while doing active chemo, because they aren’t reliable then.) My paternal aunt and three of my cousins (her daughters) have all dealt personally with breast cancer. My oldest cousin died of recurrent mBC. Her youngest sister, positive for the BRCA genes, had a prophylactic double mastectomy. I get breast cancer awareness, people – I support it and I’ve even donated my writing services to Komen foundation fund-raising efforts.

But I’ve got a thought – maybe radical, but hear me out.

To truly raise awareness, we need to let the individual cancers assigned to months other than October shine. We need to get the pink-wash out of the center spotlight for 11 of the 12 months of the year, so that we can have a shot at raising awareness for the other cancers that kill people – lung cancer, the #1 killer of both men and women in this country; colon, rectal and anal cancers, which are the #2 cancers that kill both men and women, gynecologic cancers, prostate cancer, lymphoma, pancreatic, esophageal cancers.

Each of these cancers needs their time in the spotlight if we are ever going to successfully raise awareness. But to focus on these other cancers, we need to stop the pink madness, the saturation of pink year-round, the promotions from November to May for May’s country-wide Races for the Cure, and then the promotions from June through October for October’s breast cancer awareness events. Is it too much to ask for the center spotlight in the months that aren’t May or October? Is it too much to ask that the promotions designed to raise breast cancer awareness let some of the other cancers have their chance in the spotlight, their awareness months without fighting for air time and ‘net space or having their colors diluted by pink?

Cancer doesn’t care about the color of your awareness ribbon – but people do. And it’s people who need to be made more aware that colorectal cancers, lung cancer, gyn cancers, prostate cancer, pancreatic cancer, brain cancer and other cancers are as much or more likely to be fatal and to affect larger populations than BC.

So, with all due respect – stay out of my blue month, okay? I’ve got some awareness to raise for the cancer that will affect over 150,000 new patients and kill more than 50,000 men and women this year.

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