Tag Archive for survivorship

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.

Cancer girl, like it or not

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

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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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New York on $10 a day

December 7, 2009 travel One comment
Harlem Brownstones
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After six years of trips to NYC to visit the oracles at Memorial Sloan Kettering , it was bound to happen sooner or later – I’d pack, last minute, for an oncology follow-up and I’d forget something critical. Meds. Ostomy supplies. My phone (or the charger!)

Or I’d forget what I left behind this trip…my debit card.

I am an ATM girl. After my latest CT scan at the hospital, I stopped at the ATM on the first floor, opened my wallet, and saw the blank slot where my credit union debit card normally lives. I thumbed through my purse, remembering as I did the last thing I’d done on Friday night – after walking dogs and dropping them and Churro at the kennel, I stopped for gas at the Hess station and tucked my debit card into the right-hand pocket of the fleece jacket I wear to walk dogs. The fleece jacket I saw clearly, draped over the top hook of the wrought-iron coat rack by my back door. At home. Damn!

With $50 in cash and plastic access to my bank account, I long ago stopped carrying a checkbook when I travel to NYC. Luckily, this time I tossed it into my backpack so that I could pay some bills. Instead, I may need it to ‘cash’ a check to my brother in exchange for some folding money.

After Saturday’s bout of freezing sleeting sorta-snow, it’s been cold but sunny and bright. I really REALLY wanted to explore East Harlem, but limited to $50 in cash and a credit card I’d rather save for emergencies, I’ve been exploring on foot and by subway. I stopped at the Food Fare on Lenox Ave. and picked up staples so that I could cook in the apartment I rented through AirBnB. I didn’t go to Amy Ruth’s for chicken and waffles and I’ve ignored the tempting smells from the tacqueria around the corner. But don’t worry; Regina’s house is lovely and I’m sure I’ll be back in the neighborhood again.

In tribute to the neighborhood, I made my version of arroz con pollo – a small pot of turkey thighs and saffron rice (FoodFare takes credit cards! yippee!) Spent way more than I wanted to spend at CVS to justify picking up an extra package of Poise pads. But at least I’ve still got around $40 – enough cash to splurge on a cafe au lait tomorrow between doctors’ appointments., and pick up some travelin’ food on the train if needed.

Has anybody seen my mind? Or my packing list?!?

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Reality checks come in threes

November 8, 2009 survivorship 4 comments
An example of early-style Staunton Chess Set

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When the reality (and eventual finality) of a stage IV diagnosis comes calling, it just keeps ringing the doorbell.

I started my morning by reading Kairol Rosenthal’s latest post on Everything Changes – where she asked readers if cancer had ever intruded into their private spaces. That led me to Alli’s blog, RedHeaded Bald Chic, where she wrote about the heart-breaking realization that she can no longer safely care for herself. She is sacrificing her independence to the progression of her ovarian cancer. She’s moving back into her parents’ home, into the bedroom she had as a girl, until her cancer means she can no longer climb stairs and needs the reality of a hospital bed on the first floor. Check.

Next, I checked forums – on Colon Talk someone let us know there was a new entry in Joe’s blog, where he’d left an update about his wife L, a stage IV rectal cancer patient with advanced mets who went into hospice care a couple weeks ago. L’s body systems are shutting down, but she is still in terrible pain and raging against dying. The hospice workers suggested that her inability to accept her reality, to accept that her body can’t keep up with her desire to live beyond her diagnosis is making it harder to control her pain, making these last days more difficult. Fighting reality is making it harder for them to help her. Check.

Finally, I popped into MyCRCconnections – although I’m a CCA buddy, I can’t access that site at work so I only read the whole board on the weekends. Catching up, I saw a thread started two days ago by a woman who has decided to stop chemo until after the first of the year. Her latest chemo regimen (her third) is taking more out of her than she can handle, more bad days than good days. She wants to spend the holidays with her family and take some vacation time with her husband and she wants to do those things away from the haze of chemo. Her doctors have told her that, since she’s out of drugs, they have no other options for treatments. If she progresses on this one as she has on all of the previous chemos, then at best she’ll have a few months. She’s struggling with her wish to have as much time with her family as possible.

Her thread was maybe the hardest of the reality checks. Two years and change ago, she found TheSemiColonClub, a yahoo! group I moderate for colorectal cancer survivors – newly diagnosed and confused, searching for reasons why and desperately convinced that she would do the chemo for her stage III diagnosis and be able to continue her life as if she’d never had cancer. Was it diet that did her in? Lack of exercise? She resolved to do both. I remember once she asked about her chances for progressing to stage IV, and we talked about the stats, about the fact that not everyone in stage IV dies the year they’re diagnosed, and not everyone is stage IV when they die.

Then she had the first recurrence, and the second. Now she’s out of drugs, and almost out of choices – and staring hard at reality. Check.

As every scan approaches, I check in with the reality that cancer could come back, that my day-to-day reality of remission could end at any moment and move into the reality of a cancer patient dealing with active disease – again. Every scan could color that picture in more clearly, making it easier to see the pitfalls and the rough road ahead. I can’t think about the course of the road every minute, but I’m always traveling it, and the reality checks in the world around me only make the road more certain. Because despite the work and the plans and the projects, the training classes and the dog shows, reality can change in a heartbeat. It’s unemotional, unpredictable, impartial, unforgiving, intolerant, impatient.

Reality.

Check.

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Look to your right – it's not all about me!

September 13, 2009 cancer, survivorship, the 'net 6 comments
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When I started writing this blog, it was all about me — what I was feeling, my treatments, my surgeries, my struggles, my doctors. But as my life out loud lasted longer and moved into remission, and then recurrence, and now back into remission, I wrote here about different subjects. Some of my other passions (as you might have noticed from reading older posts) are my dogs, dog training, research, camping and cooking. This blog has become very personal, and for the most part, it’s still all about me.

But now and then I’ve written about causes which inspire me: the lifestyle study examining cancer prevention which is taking place in NY state’s Mohawk Valley; the foolishness of some proposed NY state canine legislation; Yoga Bear‘s efforts to get funding for programs that bring yoga to cancer patients; the Army of Women’s efforts to bring more women into cancer patient research. And the last few days I’ve mentioned Everything Changes, Kairol Rosenthal’s blog about living with a cancer diagnosis in as a 20 or 30-something adult.

Kairol writes a great blog, one that makes me think (in a good way) about how I’ve chosen to live with cancer. As much as I enjoy her blog, it’s only one of the links in my sidebar. So today, it’s not all about me. It’s time to spotlight some of the other folks who make up my blog roll. Those links in the right-sidebar are there because I find their blogs or the sites interesting, thought-provoking, inspiring — and sometimes they make me laugh out loud (LOL is on purpose an acronym for my Life Out Loud.)

Casa Az is my friend Azahar’s personal blog. Like me, Az is a stage IV cancer survivor. Unlike me, she’s an American ex-patriot (Canadian) living abroad in a place I’ve always wanted to visit: Seville, Spain. On her site, you’ll also see links to her beautiful photos at Azahar’s Sevilla, Azahar’s Kitchen, and Sevilla Tapas. Dealing with cancer outside of the battered US health care system is very different from what I’ve experienced here, and sometimes orders of magnitude more complex. Az inspires me daily, mainly because most of the time she lives her life and doesn’t talk about cancer.

Dr. Mike Eades’ Protein Power Blog can cover any subject that crosses Mike’s radar, but it most often focuses on diet and nutrition research. I’ve been a low-carber since 2002; some of my docs think my diet may have helped me withstand the rigors of over 75 chemo infusions, three surgeries and 25 days of radiation. I’m not going to argue; low-carbing just makes me feel better. Mike’s trademark post is an analysis of the latest hot-topic nutrition study — and he generally can make even the most complex nutritional science interesting and accessible.

The author of My Cancer Deployment calls herself ‘Sugarmouth O’Riordan.’ Be warned, this isn’t a sweet-as-pie discussion of life with rectal cancer. The subhead for the blog says it all: You’ll find no pretty ribbons here. Sugarmouth spells out what she’s feeling, how she’s feeling with the appropriate asterisks included. Her blog is gritty and real and Sugarmouth always makes me think.

Whidbey Woman is a caregiver to her husband, Ron, a recurrent colon cancer survivor. She’s been journaling about her experience at Ron’s Road to Recovery. Mixed in with observations and thoughts about coping as a caregiver are tips for survivors like how to prepare as a patient when you’re about to start chemo again.

I met Rotorhead at the Colon Club, an online support community for colorectal cancer survivors and caregivers. Rotorhead’s Waterblog is about RH’s journey with cancer, and his physical and mental return to wellness. I think what I find most appealing about RH’s blog is that he’s done as much as he can, as often as he could, to focus on living his life. And he writes about surfing in Hawaii. When things were tough for me, I’d visit RH’s blog for the sheer vicarious joy of reading about his daily adventures on the ocean.

There are more blogs out there which talk out loud about survivorship; I’ll spotlight them in another post. Meanwhile, you might find some thought-provoking interest if you check out the links in my Blogroll. There it is in the sidebar — just look to the right. Survivorship isn’t all about me.

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