Tag Archive for 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

Chemo treatment #28

November 2, 2011 cancer, survivorship One comment

I am two hours into my 28th chemo infusion since April 4, 2011. If you count the two disastrous Folfox infusions in March, that’s 30 infusions since my recurrence was dx’d. But I’m only counting my new weekly 6+2 5FU + Erbitux regimen. We skipped two weeks – one for blood values, one for a fever and UTI flare-up. So – 28 continuous weeks of chemo.

I can feel the energy draining out of me with each drip in of Erbitux. The Dunkin Donuts small coffee isn’t even touching the fatigue that is piling on, along with the brain fog. So much for working in the infusion chair.

Kirshner suggests that my options, if Saturday’s scan shows stable disease, are to:
1) continue on 6+2 regimen
2) drop the 5FU and just do weekly Erbitux
3) take a short break (with intense monitoring) from all chemo.
I’ve never thought taking a break while I still have active (even if controlled) disease was a good choice. Seems too risky to me. On the other hand, it would be good to feel “normal” through December, and I could start 6+2s again after Christmas.

And feeling “normal” would be really nice right now.

The cancer card…

May 30, 2011 cancer, survivorship 7 comments
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Have you ever used your diagnosis – or the diagnosis of a loved one – to take advantage of a situation? Have you ever used your cancer to get out of doing something you didn’t want to do?

Have you ever played the cancer card? I have.

When my insurance company was fighting my bills for CRC surgery at Sloan-Kettering. When it got too difficult to concentrate on work, at work, but I could easily accomplish things when working from home. When I was too tired to handle family drama the weekend after a chemo treatment. Yep, I played “the cancer card.” I opted out.

I told my insurance company that “I have cancer, and I’m going to the surgeon who can treat me, and I’m not going to negotiate costs with his office.” I told my boss that I was more efficient at home, and that commuting to the office and working on site was too stressful and impacting my health. I told my family that I was too sick.

I’ve also, on purpose, NOT played the cancer card. I tried hard not to play it at work, because some people around doubted my ability to perform my job after I returned to work on chemo and after surgeries. I worked hard to be able to perform my “normal” job responsibilities – and every time I needed an accommodation because of cancer, I knew that it just reinforced the idea in some of my co-workers’ heads that I was too sick to do my job, and should be passed over for other, more able, co-workers.

Out in the world, I resisted the “cancer girl” label, and I resisted getting a handicapped parking sticker for a long time. Instead, I committed sins in the parking lot on those days when I just couldn’t handle the half-acre walk into the local supermarket.

I finally gave in on handicapped parking this year, after a recurrence with bone mets was diagnosed in February. My permanent handicapped parking tag is slipped into my visor, and hangs on my rear view mirror – not for use every day, but it’s there, thank the goddess, on those days when I really need it.  Last month, I formally applied for Social Security Disability. That was an emotional hurdle – recognizing that it’s possible I may never be healthy enough to work again – but one that I needed to scale, and a condition I needed to accept, so that my life can go forward without worrying about money if I can’t do enough work to earn an income.

Still, there are things about playing the cancer card that bother me. The idea of using my cancer to get out of a responsibility when I’m perfectly OK bothers me. The idea of anyone else using my cancer – for which that person provides only minimal, temporary support – to get out of obligations or to garner sympathy really bothers me. If anyone’s been inconvenienced by my cancer, that “anyone” would be me.

But for most of my time living with cancer, I have been fully living with cancer. I haven’t committed to things I couldn’t do or didn’t feel well enough to finish. When I’m physically or emotionally not up to something, I let the world know that it’s cancer – not me – that’s keeping me from participating.

And when I feel OK, and I don’t feel like participating in something, I just say that. But I try not to play the cancer card without cause – because someday, when I need it, I want that option to opt out to work at full strength.

When do you play the cancer card, if ever?

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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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Who dreamed I’d ever get to 100?

January 31, 2010 cancer, life, survivorship 7 comments

This is my 100th post.

Six years ago when I started jotting notes in an online journal, it was a way to affirm that each day when I woke up I was still breathing. I started over at Blogger, and made several entries I kept private. Eventually I deleted them when I made that blog public. And people read it, made comments. To this day, that still amazes me – and I appreciate every one.

When I started Life Out Loud, I had just been dx’d with Stage IV rectal cancer. I had nine tumors in my liver. I was considered inoperable, and although my symptoms were more or less gone, my tumors weren’t shrinking much. And then, on Labor Day weekend 2004, I woke up early. I had a chicken pie to make for the New York State Fair. It was a great recipe, and I was in the middle of a really successful week at fair (when I’m in the throes of major illness, I always seem to wow the judges.) I was all set to bring home another win that Saturday.

But when I tried to stand up, I couldn’t put any weight on my left leg.

I knew those symptoms – and I was on Avastin and coumadin, both known to aggravate bleeding disorders. I was having another stroke.

Then I *really* became inoperable – even though the previous week a scan had shown that my tumors were (finally) shrinking, nobody in his right mind would operate on a patient so high-risk. Liver resection was now really off the table. My chemo became palliative chemo, chemo for life. And I knew there was only so much more chemo that would work, that I could stand. So sooner or later, I was going to die.

Tell me I’m gonna die, I start to write. I pounded out words – for work, on forums, in my truly private hand-written journal (the one none of you will ever see!) I wrote like a madwoman. I began a blog.

Today it’s almost six years later. I finally had that liver resection in 2006, after a first surgery and more chemo than anyone should ever do. I have had a locally advanced recurrence that challenged me and the skills of five surgeons. I took radiation for the recurrence, both external and internal, that has left me with permanent neuropathy issues. But I am alive and – knock wood – in April I’ll be 24 months in remission and NED (no evidence of disease.)

I am still writing like a madwoman. Three blogs, and I’ve just started a fourth for a news content provider. Five forums, three where I post nearly every day. A lot of writing for work, aka ‘the paying gig.’ Poetry when the muse lets me speak.

Some days I’m really, really tired. Living with cancer, even in remission, is a full-time job.

Other days, I think I’m okay. I make plans for things like Colon Cancer Coalition (C3) Call On Congress 2010, the kind of 5-day energy stretch I have to pace out very carefully. I never know from one day to the next how much energy I’ll have, but I’ve gotten to the point where I’m willing to cross my fingers and make plans.

I’ve never been to Washington, DC as an adult – much less to meetings with my congressional representatives outside of their home offices here in central New York. It should be exciting. It will be new territory. It can make a difference – so since I’m still here, I want to at least try. To make a difference, that is. And to have an adventure while doing that would be a good thing.

I probably should have written something deep and profound for post #100. Instead I went for what is moving me now at 2 a.m. There’s a ring around the moon tonight, and new snow, and I’m making plans for the future I wasn’t sure I’d ever see.

Who knew?

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