Monday, June 30, 2008

Arriba, Arriba: This one's for Mary

Mary is my die-hard soccer fan.  She was a fierce competitor in her day, with the knees to show it, and amazing loyalty to her favorite international team, Real Madrid, which hasn't won a major tournament since 1964.

Mary's not even that old.

A few years ago, Sharon and I were in Madrid with instructions to bring back something from Real Madrid: a team poster, a scarf, a noisemaker. We were such soccer virgins we thought Real Madrid was a place in the city, maybe near the big outdoor market near the city centre.

''Real Madrid?" we would ask, pointing uselessly in all directions in that dorky tourist way.

And people would point around too, trying to get us to focus on the kiosks and little shops that contained exactly what we wanted.  We just couldn't see it for looking at it.

So a St. John's toast to Mary and the boys.  I hope you aren't sober for days!

Saturday, June 28, 2008

See Food Diet

When I first came home from the hospital, I really struggled with what to eat.  I had a green sheet from the dietician about non-constrictive diets, but since it covered everything from seeds in kiwi fruits to mastedons, I found it less than helpful.

And besides, I wasn't feeling in an entirely trusting mood given what they had offered up as "food" from the hospital kitchen.  I don't know how trained people can look at what's on those trays without a deep sense of shame.

So what to do, what to do?  My guts were struggling.  I was taking steroids to reduce inflammation, so I started looking for the kinds of things people with celiac eat.  If I was already producing too much mucous, maybe I should eat less gluten and dairy and more---well, more of what celiacs eat, whatever that would be.

The quest was on, and I tried really hard to balance proteins, carbs and soluble fibre.  I ate every couple of hours (pathetically) so my stomach wouldn't fill up too much, and I ventured into new territory: goat cheese, quinoa, rice crackers.  Rice for breakfast.  Discovered that sushi and Chinese sticky rice were great, and mashed potatoes not so bad at 9 in the morning. One week I ate almost nothing but.

But I was falling over with hunger.  I kept snacks on my bedside table, snacks in the fridge, snacks beside the bathtub.  I have never cried very much at any stage of this cancer journey, but I sometimes sobbed with fatigue and hunger.

Got so bad I even tried the Boost-type fake food the hospital dietician had sent home.  It had sort of awful connotations for me, because I once lived next door to a crack house, and I discovered that crack heads live on Ensure and throw the cans all down your back alley when you're not looking.  But when you get hungry enough, you'll eat like an addict.

Bad mistake.  That stuff might be chemically fortified to help, but my guts didn't want it inside and showed me in no uncertain terms what I could do with those cans.  

It was my psychologist who introduced some sanity to all this.  "Look, kiddo, you are thinking about this all wrong.  In your state, nutrition isn't the point.  You gotta get some calories into you."

"I thought that's what I was doing."

"Nope.  First thing off, get some Ben and Jerrie's full fat ice cream.  None of the diet stuff--get the richest you can find.  Ice cream will digest in the high gut, so even if you have diaerrha 20 minutes later, you'll have got some cals into you already."

"Then start thinking French.  Dollops of butter on your scrambled eggs.  Put cream in.  Gonna have a little cake?  Forget the icing--put straight whipped cream on.  Gravy.  Just push those calories till you start feeling a little stronger."

I started hallucinating a barbeque burger--with cheese.  Fat glistening on the top.  Mayo.  Potato wedges.

All of a sudden, life seemed possible again.

And I felt like a kid.  See something I liked?  I'd eat it.  It was surprisingly easy to flip the bird at a  life-time of dieting.  I needed that fat.  

Now, I have no idea about the physiological soundness of all this--but I do know that when I followed the cravings, I stopped crying.  And I didn't eat only this stuff.  I wanted meat and rice and little bits of veggies.  Had 8 avocados in one week.  

It was fun to munch on popsicles when I got tired of drinking incessant glasses of water.  I wanted to go to the grocery store and load up on wicked things and see if some skinny minnie would look down over her bifocals at my cardiac central basket.  I think I'll get some Cheerios.

And hey, I found out that the fastest way to restore electrolyte balances when you are dehydrated is chips and coke--the salt, potassium and sugar work like hot damn, and taste way better than Gatorade.

Found an article on a science blog from a 2003 issue of Gut.  Gotta love that title!  It suggests that people with colorectal cancer who eat a high fat diet after treatment actually live longer.  

Friday, June 27, 2008

Clinical Trial: Blood Test to Screen for Colorectal Cancer

Phenomenome Discoveries, a Saskatoon-based research company, has just made joint announcements with the government of Saskatchewan and the University of Calgary to begin clinical trials of a potential blood marker that would screen for colorectal cancer.  Information about these trials is on the company website.  Here's an excerpt from a newspaper report carried in the Saskatoon Star Phoenix:
    "By combining our resources, we're able to proceed with what is the world's largest and most thorough evaluation of colon cancer pathology and metabolic risk factors ever performed in the history of medicine," said Dr. Dayan Goodenowe, CEO of the Saskatoon company.

    Speaking at a Wednesday news conference, he said Phenomenome's research has indicated 90 per cent of people who have colon cancer have a metabolic deficiency. Based on six years of research that involved more than 1,000 people worldwide, the company has developed a highly validated blood test to identify who has the deficiency.
    The two-year trial will begin at the Pasqua and General hospitals [in Regina] and will involve 5,000 patients".
The Alberta trial has a different focus:
    Robert Hilsden, MD, from the University of Calgary is conducting an investigator sponsored clinical trial using Phenomenome's gTA test. This prospective cohort study will be conducted at the Forzani Charities Colon Cancer Screening Centre (CCSC) in Calgary. The study protocol has a two arm design to evaluate average and moderately high risk subjects with no known colon pathology and a smaller sub-study of CRC positive subjects.

    The primary aim of the first component of the study is to assess the diagnostic accuracy of the gTA test in detecting CRC in asymptomatic persons scheduled for a screening colonoscopy based on fecal occult blood results. The second component of the study will focus on the gTA levels of CRC positive subject's pre and post-surgery to determine effects of tumor resection. All study subjects will be followed longitudinally for three years with additional gTA tests and colonoscopies based on the initial results. The goal is to enroll 1300 subject in the first arm of the study and 150 CRC-positive subjects in the second arm of the study.

    This study is scheduled to begin in 2008.
I think it is tremendously exciting to see a very different approach to screening, and to know it's coming from our very own prairie folk.  I say, way to go to everyone involved.

Confronting the "P" Word: More of the Long Version

As I finished my 16 days in hospital, getting out turned out to be almost as hard as getting in, not the least because big decisions needed to be made about the best way to prevent another obstruction.

They had me on the 3 times a day shot of a drug called Octreotide, prescribed by my oncologist.  It worked like a charm.  The problem is that the drug is so expensive, and when it is used outside the hospital setting, it can be prescribed only by a palliative care physician.  

So all of a sudden, a whole new team of docs, nurses and social workers started showing up at my bedside.

Now, in one way I have been preparing for becoming an official palliative patient for 4 years.  As soon as my disease recurred, we knew that all treatment really ceased being curative.  the goal of all my chemo since 2004 has been to keep disease-free intervals as long as possible, and to manage what disease there is to keep it stable.  In that sense, even very active and powerful drugs can be thought of palliative.

I've given a talk to second year med students about palliative as a continuum, not a death sentence, and I have always had a clear understanding of the number of chemo cocktails remaining to me, and the order in which options would disappear.  So while my conversation with my oncologist about how quickly my disease was now progressing was hard, it wasn't like the territory was exactly new.

But that didn't make it easy.  And the first major problem came in how the professionals decided to put the whole matter to me.  In order to have access to the long-acting version of the drug I would need (worth $2,700 per shot), I had to be registered with the Blue Cross Palliative drug program.  I continue to be grateful that such a resource is available, and politically more committed than ever to a public system that takes finances off the table.

What I hated was how one of the nurses came in and played "How big is the baby" with me.

I know it is hard for nurses on surgical units to talk honestly with patients who have cancer.  It remains a big unspoken word, even though many of us patients are there because of cancer.  so she breezed in to reassure me that I could be happy about what was going on.

"Look," she said, spreading her hands out a bit.  "Your regular drug coverage is like an umbrella this big.  It's good, but not big enough.  Now you have an umbrella that's thiiiiiiiiis big.  Isn't that neat?  That's all this palliative stuff is about.  You are covered thiiiiiiis big," spreading her arms wide. And she grinned professionally, certain that she had erased all bad thoughts from my head.

Is it neat to be told you are now this ill?  No, it's not.  Is it neat to think that you can celebrate because someone just got you a Costco drug card that your own dear doctor could not access even if he wanted?  No, it isn't.  Is it neat to be treated like a child who gets the signal not to cry because mommy just kissed it better?  No, it isn't.  

All of a sudden, new players arrive on the scene.  They leave, they contradict one another, and hit in the gut, you have to try and put things together when every cell in your body is trying to absorb what has just happened.  I tried not to retreat into a little animal ball of hurt and fear.  I tried to muster short questions and short versions of what I thought I was understanding.

And I realized I couldn't get the p-word out of my mouth when I tried to tell my sister and my friends what was happening.  I talked about having a home care team, about the bureaucratic necessity of getting paperwork done "through Edmonton".  I even tried out my own not-stupid nursy version that we were just accessing the system.

What I couldn't do for a while was to say, this is a new stage for everything.  Only two people used hard words with me--my partial obstruction was labelled a malignant obstruction by a doctor friend, and we talked calmly about it.  And one other used the word "terminal" and how hard it was for him to make the transition from knowing me as being in active treatment to being in this new place.

The first palliative doc I saw said I didn't have to promise to die or anything.  But now dying was on the table, and so was the question of how to live with this.

Hedging my bets on your behalf if you are learning this for the first time, the nurses say I am not dying.  I don't feel like I'm dying.  I actually do feel like I am recovering from an overdose of expensive dope, and that we are on track to getting bowels managed well.  But I am a palliative patient, and there's no short version of that experience.  

I hope you might want to hang out in the next little while as a I explore the longer one.  

Short Versions

My ninety year old mother loves to tell stories about her day.  Mostly, I just settle in and let them unfold, but sometimes there are just things to do, places to be, shoes to be put on and coats to be buttoned up.  

So you gotta say, "Can you just give me the short version today?"
Well, she gives you this look and shoots back, "No I can't.  I don't remember how to do short versions any more."

Of course, we all grow into becoming our parents, and I know I am getting less and less good at short versions.  And that's just part of what you swore you would never do--turn into your mother.  But I'm also learning that short versions always suit the active and the well far better than they suit those of us trying to make sense of all the changes we live with.  It's like the world has become a sort of white rabbit--always I'm late, I'm late, I'm late for a very important date no time to say hello goodbye.  I'm late, I'm late, I'm late. 

Which is terribly ironic when you, yourself, are the one who knows you are running out of time.  You'd think it would be the terribly ill who would want to jam in the essential details and let the frills go. Just get to the short version.

Trouble is, it seems to me that what others call the  extras  have actually become the place where important ideas, insights, worries and fears actually hang out.  I know there are places I have to try harder to be efficient in describing symptoms, giving signals about whether I need to see a nurse today or not, letting someone know if I need something picked up at the grocery store.  But I can also see how that effort comes at the cost of other ways of living I am starting to really enjoy.

Those of you who know me personally know that I have been an academic all my life, and I love nothing more than a good theory--so I'm going to muse about some of this stuff from time to time.  My current best helper when I want to dig down and find out what that burr under my saddle actually is (sorry, but Calgary Stampede is coming up, and such metaphors have a life like c-difficile.  In 2 weeks I promise not to talk like that for another year).  Anyhow, my good thinking friend is Arthur Frank.

But for now, I have to do a mother thing and go back to the main story line I sort of abandoned. Some people have been asking for more info on what's being going on since I got home from the hospital, and how come I'm still having troubles.  Suits me to keep a bit of the plot line intact along with musings about what it all might mean. 

Brown Blogging It

PamJam's comment that the blog is brown is one of those oh my god I never noticed moments that just make me laugh!  The template is called Scribe, I'm a scribe, it's parchment.

Ya right.  I'm going in to find something a little less--evocative?  See you in a few minutes!

Thursday, June 26, 2008

Inspiring Blog

My friend Trudy Boyle has a real blog.  She is chronicling the first hundred days of her treatment for breast cancer, and her blog is a work of art.  Trudy is an amazing writer, and she includes gorgeous photos, intriguing links to things she is reading or would like to read.  I love her apologies to her hair, and her latest discovery that spending time with her granddaughter drove her white counts, usually in the post-chemo toilet, so nicely up in the normal range that her doc thought they might have got someone else's results instead!

Pop over to Joyful Wrecks and enjoy!

Maybe if I had a camera it might help??? Although given my musings of late, it actually hard to imagine how that could be a good thing.  

Every Jewel is Precious

You know how people can still say where the were when JFK was shot.  Well, I was one of those watching Oprah on a pivotal show when her new cardiologist-guru, Dr. Mehmet Oz, showed up to talk about pooop and farts.

He wheeled in a tray of intestines, one healthy (or at least as healthy as you can be when you are dead) and one diseased and ratty, and he handed Oprah a pair of purple plastic gloves, the kind chemo nurses wear, and made her touch and squeeze.  Then he proceeded to talk about what goes on in intestines, and all of a sudden, the nation was transfixed.  When we were little, most of us were fascinated by what goes in and what comes out--but we learn very early on not to actually talk about it "in polite company".  So here was this big doctor describing in vast detail what a healthy bowel movement looks like, what it should sound like hitting the water (hint, like almost nothing--the "rip" entry that Olympic divers strive for).  

And he talked about farts--what makes' em and how many the average person produces in a day--somewhere between 14 and 23.

Wonder who got to do the data collection on that one?

For years, there has been a wonderful site for kids online sharing real information about stuff that isn't polite to talk about, like boogers and gas.  And now adults are logging on to message boards to ask questions about issues they'd kept hidden for years.  According to Oprah's site, 38% report that issues around gas are a problem.

Now, there's lots of things to be said about this phenomenon, and YouTube is a great place to get some scathing commentary on the Queen of Daytime and the ways her interests all of a sudden become ours.  That could be a topic for another time all on its own.  What's got me thinking is that until I started having bowel problems, my whole gut (okay, actually my whole innards from top to bottom) was terra incognita.  I knew I had lungs and a liver and spleen and pancreas and all that--but damned if I could accurately point to where they were, much less say in any kind of precise way, how they made me work.

I was like the old Portugues sailors headed off to the ends of the earth with maps that labelled all the unknown parts "Here Be Dragons".  Did I know I had 37 feet of intestines?  Nope?  How big a rectum is?  No idea.  Just knew I wasn't much of a fan of having it examined.  Until I had my first surgery, I didn't know that when you haul out that 37 feet to feel every inch of it for tumors, it goes into a kind of catatonic withdrawal that lasts for days after.  The very most exciting thing to happen post-surgery is to pass gas.  That means that things are waking up and your guts have decided to join the world again.

After my first surgery, my mother sent me a message from her prayer group: what would be the best thing for them to ask for, this little group of snow white Presbyterians.  

"Ma, make it for a fart."
"Oh Pat, I couldn't possibly do that.  Whatever would they think?"
"Maybe that I really needed one?  But look, you can just keep it between you and God.  That'd be good, too."
I never found out whether she trusted God enough to talk about it, but I kind of doubt it.

Now, in managing the mastedons, farting has become important again.  I've discovered that all the sloshing that goes into trying to propel the food out subsides enormously when I can pass gas in that teenage sort of way.  Every morning starts with a call from my home care nurse and a report on the tank.  And I discovered that if I feel bloated and not functioning right, I can lie on my left side and that helps get gas going.  The nurses say that's anatomically sound, and it's how the place babies for the same purpose.

I just don't know why it's sound.  Must be the direction in which everything winds around?  I really mean it when I say I'm stuck with an essentially medieval understanding of the science of all this.

Which means I'm still looking for Hildgard von Bingen and her meditations on the bowel.  Anybody else but Sherri ever heard of this?   

Tuesday, June 24, 2008

Mustard Gas

Mustard Gas

from Pat Clifford (2006), Embracing Brings You Back, Coteau Books 

Returning home from France,

their throats and lungs burned out, spent soldiers share

my life: bone-cracked exhaustion, baldness, retching, mouth sores and the curse

of cramping diarrhea.


It took some smart American nerve gas scientists to put

two and two together over coffee, I imagine, brewed on Bunsen flames.

Guts and hair grow fast. As do cancer cells, so: why not? When we’re finished

with the Germans we can hit that other fucking shit, no?


My television shouts Iraq but I don’t need to travel half a world

away for the chemistry of mass destruction. My only hope

for survival squats in the sterile fluorescence of the Cancer Day 

Care unit ten kilometers from my home, waiting.

Chemo Week

I've started Round Three of chemo this week.  It's a drug called Alcoran, one of the earliest chemos used for ovarian cancer before they developed platinum and taxane based alternatives.  It's an old war horse, generally used when other options are no longer available.

I was talking to a friend in California who had a detailed analysis of her sister's tumor tissue done, and the assay (as it is called) indicated that she would have actually have been better off to have started all her treatments with this drug.  So it still has its place in the repertoire, and I can tell from how my lower abdomen is feeling that it actually is working right now.

So here's the weird thing.  The drug is a derivative of mustard gas.  Years ago, I wrote a poem about this in my collection Embracing Brings You Back.  I'll try pasting it in another post.  I find that history a bit creepy, but also intriguing.  It lets you know how blunt a hammer chemotherapy remains.  One of my fantasies is that soon we could have chemo museums where people could stand and stare all all the paraphernalia and marvel:  "Can you believe we actually had to go through that?"

The other strangeness is that I take the drug as eight little pills each night for 5 nights before I go to bed.  No needles, no experts directing the toxins into me.  And no trips to medical day care.  I didn't know that when I wrote the poem. Just me deciding when it's time, counting pills out carefully like a slightly addled pharmacist, and sending them down the hatch.

I put them in a shot glass.  

Today I get to see whether I am flattened on the couch, nauseous, and what effect this will have on my gut, since all chemo is hard on the GI tract.  Last time was easier than the first--so anything is possible.  But it's rainy and cool, so if I hit the sack, it'll be my favorite sleeping weather.

Monday, June 23, 2008

Rats 2, Pat 1

Just a quick note to update you on my day.  Having written my brains out yesterday during my spa weekend with Sharon, I got pretty quiet today.  I actually hadn't slept well Sunday night because my head was full of other stories I wanted to tell.

Writers' curse, a sort of brain cramp.

So today I stayed close to home, enjoying the company of my friend Georgia and napping as often as the cats.  One of the realities of living with stuff like this is that you really do have to take things one day at a time.  Planning becomes an exercise in creating fiction.  One good day doesn't follow another--and nor can I be certain that a bad day won't disappear with the sunrise.

Or more accurately, I try to find ways not to think of days as good or bad.  They each have their own character, and when I can meet my body where it actually is, rather than where I want it to be or try to force it to be, I can remain calmer, and sometimes even a bit curious about what today's changes bring.

I think years of meditation may actually have made a difference.  But that's always up for grabs, too!

I'm also going to try and change a setting in the part of the blog that lets people comment.  I seem to have left a default setting that is keeping everyone out.  Not good.  Now you will get to see whether I can think my way through permissions.  I was never any good at it before, so we may have to wait to be rescued by Sharon before you can comment.  But give it a try, and if it works in the next half hour, I will take all the credit

Sunday, June 22, 2008

A Mastedon Makes an Obstruction

I'm beginning to think the Italian sausage theory of my obstruction isn't so crazy after all.  In this post, I'm going to copy a description of how our guts are designed to deal with digesting big hunks of meat we come upon serendipitously, whether by stumbling on a big kill or browsing the lunch counter at Lina's.  

It might fall into the TMI category of more detail than you want about how the gut works, so feel free to ignore it, especially if you are a friend who has to listen to mine sloshing and growling these days.  But if you want to know more about why cancer interferes with normal bowel functioning, this is as good a description as anything I've found.  It's in a book by James Hallenbeck called Palliative Care Perspectives

    The intestinal tract did not evolve to compensate for mechanical bowel obstruction caused by an immobile, fixed lesion such as cancer. The physiologic changes that arise with obstruction would be adaptive to reversible forms of bowel obstruction that may have occurred for our ancient ancestors, but they are maladaptive for patients with cancer. Similarly, kidneys demonstrate a maladaptive response to heart failure. Decreased renal perfusion is sensed as dehydration. Fluid is retained to compensate when, in fact, the patient is drowning. We adjust for this by "overruling" the kidneys, telling them to get rid of salt and water and not hold on to them. The kidneys can be mistaken. What "misunderstanding" arises in bowel obstruction?

    Imagine that you have been very hungry. Your tribe finally hunts down a mastodon, and it is time for a feast. You gorge yourself, eating great chunks of meat and causing a temporary obstruction. Your body would respond in the following way.

    1.  Mechanoreceptors and chemoreceptors would be stimulated by the distention caused by the large build-up of food proximal to the blockage. These receptors would tell your brain to stop eating. 
    2.  The intestine proximal to the blockage would begin hypersecreting fluid, trying to flood the system and wash the intestinal contents downstream.
    3. Intestinal motility would increase, further trying to push contents downstream and causing cramping.
    With luck, you would live to hunt another day. While this approach works well for ingested mastodons, it works poorly for malignant bowel obstruction.

In essence, what Hallenback is describing is what made me call my doctor. I was nauseous (stop eating, Pat, and get rid of what you just put in your stomach because it ain't going anywhere). My gut was scramping. Oddly, the best description of the pain for something so serious is that it was colicky. I could hear fluid roaring and sloshing around, trying desperately to wash stuff downstream.

There just wasn't anywhere for it to go.  The blockage formed a little dam, and everything nature was telling it to do, except for not putting in more mastedon, was starting to work against me.

Flat on My Back

The day after I checked in to hospital, test results were all back:  I did have partial obstruction of the small intestine, and my chemo had stopped working.  My oncologist was shocked at the rate at which disease had seeded all over my intestines.  One measurable mass had also grown up in the lower abdomen, but he wasn't nearly as concerned about that as he was about what was happening to my gut.

I declined his offer of surgery for immediate relief of the obstruction.  If my bowel had been kinked or hooked around a mechanical obstacle like scar tissue from previous surgeries, I might have considered the option, and I guess I would have if my current situation were immediately life-threatening.  But, he said, we could try managing the blockage conservatively--which is not generally a word in his lexicon, he being a truly gentle soul with the surgical aggression of a tiger.  I wasn't surprised to learn, then, that what he meant by "conservative" wasn't quite what others did.

The usual treatment involves something elegantly called "drip and suck".  You'll have seen patients walking around hospitals with band-aid colored sticking plaster over one nostril, holding a tube that goes from the nose, past the throat and into the stomach.  That's the suck part--well named.  It's designed to drain fluids that are accumulating in the gut and causing pain and nausea. They also have a bag of IV fluid dripping saline solution to restore hydration and prevent the misery of things like hypoglycemia.

Instead of opting for that (and for reasons I am sure are particular to just what was happening to me in its own particular way), my doc opted to give the gut a total rest.  Nothing was to come in by mouth except sips of water needed for medication.  I was put on total feeding intravenously, with carefully calibrated orange bags of lipids, the kind of food one nurse told me they give babies in intensive care.  I was put on steroids for inflammation, and a hideously expensive drug called Octreotide, injected subcutaneously 3 times a day.  Using only the logic available to hospital personnel, one of those times was about two in the morning.

So for almost 2 weeks, I propelled myself all over the hospital with this hook up.  The only part of the process I could control was to walk as much as possible to stimulate the gut to produce gas, letting us know that normal functioning was returning.  Every fart became precious, and I walked in 30 minute bouts as often as I could, getting up to a total of more than 2 hours a day. 

That's about 1 hour and 45 minutes more than I ever did at home.

The object of all this was to produce poop--and the first time something with two ends came out, I wanted to throw a party.  From there, it was all downhill--or is uphill the good direction?At any rate, the treatment was working, I hadn't starved to death--not that I lacked sufficient stores of reserved fat or anything) and I would live to have some more adventures.

It was all good in the strange Alice-in-Wonderland world of cancer survival, where you become grateful for mercies that come in the strangest disguises.

Might 'a Bin the Sausage

The trouble started at the end of March as I was getting ready for yet another round of Gemcitabine and Cisplatin, my latest chemo cocktail and one, thanks to the bloated bureaucracy of the Alberta Cancer Board, I was having to pay in the thousands for, myself. More about that gong show in another section.

It's a powerful combo, and had been successful in keeping things stable, but at an increasing cost to my stamina.  My guts complained a lot, and so did I.  But as I was laying in supplies for the upcoming chemo week, which always flattened me out, I had an unexpectedly good day and found myself, shopping in my favorite Italian deli, deciding to have a big fat sausage on a bun for lunch.  I never eat big fat sausages on crusty rolls, but it just looked so damned good.

Now, I have no idea whether fat sausages get stuck in your gut or not.  Some of my friends swear up and down that that's what set the whole thing off.  But for sure, over the next couple of days, my gut became increasingly unhappy.  I tend to take a "tough it out" approach to pain, with maybe a fair amount of ostrich thrown in, just in case the trouble might disappear on its own.  So I waited longer than I should have to call my doctor.  I even talked myself into thinking I was having a gall bladder attack.

So some shame on me for not being on top of things a bit earlier, but it's also part of the experience of living with this disease.  From the symptoms that led to my initial diagnosis to this latest adventure, many of the things going on in my body could be signs of other things, or nothing much at all.  Bloating and gut ache?  Who doesn't have that?  Passing gas?  Well, that's a high art in the culture of teenage boys.  Rumbly tummy noises?  When was the last time you were at a luncheon with middle aged women?  One of the truly weird things about ovarian cancer is that it doesn't feel anything like I thought cancer would feel like.

Not that I had any idea of what cancer would feel like--but I continue to be surprised by how ordinary even important symptoms turn out to be.  So when I could hear myself gurgling and roaring from across the room, when my abdomen got distended and full of cramps, and when I felt like throwing up, I had to pay attention, even when I didn't want to.

What got me on the phone was pulling my head out of the sand and going online to match up what was happening to me with what I actually suspected: I had joined the Unlucky 40% Club.  Seeing all this could be, might be, maybe isn't stuff in plain black and white made me cry, and it made me call my oncologist, who had me check into the hospital right away.  "Look," he said, "you live alone.  Come on in and let us take a few tests and look after you for a day or two till we know what's going on."

I started to cry again, packed a little bag, and had Sharon drive me in for a look-see that ended up taking a full 16 days.

What's Going On?

In the past couple of months, I have been phoning and emailing people erratically to catch up on what has been happening to me, health-wise.  It's great to talk, but as a method for keeping everyone in the loop, it sucks.  I've been missing too many of you, in all senses of the word, and I know people get worried when it feels like I've dropped off the edge of the planet.

So I'm going to see if blogging works any better as a way of keeping in touch regularly.  I'll tell you what's up with me, and I hope you chime in along the way so we can catch up with others, too. Nothing fancy.  If I knew how to do that, I'd revive my dormant Face Book account and we could scribble over my walls.  

I'm also doing this to share my experiences with others who may also be living with bowels transformed by cancer.  I've learned a few things since the end of March when my latest adventures started, and I'll try to figure out how to share it so you can find out as much or as little as you want.  I'm planning to include medical stuff, but also my own musings about what it feels like to live with disease that is now making itself  "vocal" in unexpected ways.

Some days it catches me by surprise that I have been living with recurrent ovarian cancer for almost 6 1/2 years.  I've had seven major goes at chemo that put me in the chair or on a bed more than 80 times.  Lost my hair twice, and I haven't felt my fingers and toes properly since last June.  In many ways, my disease has progressed in a text-book fashion, although thankfully more slowly than it does for many.  So the latest adventure, a partial bowel obstruction that occurred at the end of March, came as no surprise.  

Well, that's not true.  It was a shock, but not one of those kinds that come out of the blue.  More like the oh shit recognition that I wasn't going to get past Go on this one.