Nicole's Notes

Interesting Colon Cancer Info

Okay, maybe interesting is the wrong word. But it's definitely random, in my opinion (which no one asked for). A new report was released today: U.S. Cancer Statistics: 2001 Incidence and Mortality. "2001?", you say, "But it's 2004!" For some reason this is the most recent year for which info is available. Don't ask me. But you can ask me about their major findings.

The leading cancer diagnosed among men regardless of race or ethnicity is prostate cancer, followed by lung cancer and colorectal cancer.

Cancer incidence rates for women are highest among whites. Colorectal cancer is the third leading cause of cancer death among women regardless of race or ethnicity (only less fatal than breast or lung).

Breast cancer is the most common cancer diagnosed among women, regardless of race or ethnicity.

Among white women, lung cancer is the second most common cancer diagnosed and colorectal cancer is the third most common.

Among black, Asian/Pacific Islander, and Hispanic women, colorectal cancer is the second most common cancer diagnosed and lung cancer is the third most common.

Kentucky has the highest incidence rate of colorectal cancer for men, and New Jersey has the highest incidence rate for women. The District of Columbia has the highest colorectal cancer death rates among men and women. Utah has the lowest colorectal cancer incidence and death rates among men and women.

Salt Lake City, here I come!

A Colonoscopy A Day...

Well, it's a nasty process, but it's the only real way to check for colon cancer. Well, except for the DNA stool testing, but that's not widely available, apparently. So I spent Tuesday night cleaning my colon (about as much fun as cleaning the bathroom). It's funny, I get the occasional spam message about "colon cleansing". I'm not sure why anyone would want to do this, but there are inexpensive products available without a prescription at your local pharmacy that do the trick just fine. No need to advertise esoteric potions online!

In fact, if you want my opinion (and I'm going to give it to you whether you want it or not), the best of the products is Fleet Phospho Soda (although I've heard there's a pill format... next time I'm going to demand that, I think!). There's another product that's used by some docs, but it has to be mixed with a gallon of water. The Fleet bottle (3 oz.) has to be mixed fairly evenly into two glasses of water. They're both nasty tasting, but at least the Fleet one doesn't require you to choke down as much!

I have now tried both the lemon-gingered and "regular" flavoured versions of the Phospho Soda. Both are vile. The lemon one has vague Mr. Clean overtones. But neither would be my choice of beverages.

Anyhow, the moral of the story is... "drink the nasty drink already, so that the doctor can tell you you're healthy." Which he did. Thanks to the cocktail of painkillers and tranquilizers that were slipped into my IV, I don't recollect most of the procedure, although I do recall him pointing out to me the great work Dr. Filtzer (the surgeon) did on my resection (reattachment of the remaining large intestine to the small intestine). Whatever.

I forgot to ask if I get a discount on the cost of the colonscopy since I have less colon than the average joe.

Oh, and I think I was told they took my appendix during the resection surgery. Go figure. I guess I should be happy they nabbed it while they were in there. Bonus useless organ removal. Note for those health professionals out there: don't tell people interesting and useful facts when they're doped to the eyes! Jeez.

An Asprin a Day...

I visited the gastroenterology department at Beth Israel Deaconess Hospital last week to meet with a clinical oncologist who works with the genetic counsellor to determine who needs screening. It's a pretty expensive process, so there have to be compelling reasons to convince the insurance companies to ante up the cash.

Part of his advice to me was to start taking 1 baby asprin and 1g of Folic Acid a day. Apparently these two substances have been known to reduce the formation of polyps (which are the precursors to most tumours).

He also said that I should get genetic screening done, and is having his office manager fill out copious amounts of paperwork on me to apply for it. The insurance company will probably say, "No," at which point I have to start harassing them. Fortunately, I'm good at harassment! ;)

In other news, it was time to renew my passport, so I now have a picture of myself with the short short 'do on it. Hopefully the new passport will arrive before it's time for me to head to Toronto for the July 4th weekend, because otherwise I'm sure it'll be a nightmare to get my butt back into the States.

Plus, I need to get it back early enough to take it to downtown Boston and get it stamped stating that my conditional permanent residency is extended (again). I guess the US Immigration folks are super backed up, and are having trouble getting to the people applying to have conditions removed from their green cards. Green cards are conditional until you've been married for 2 years, then you apply to have the conditions removed. So last year, I applied, and they gave me a letter saying they're backed up, and I get a year extension. That year is almost up. It's really a pain.

We have a new couch - and you can see pictures of it, and of my new short hair, and of our cat. The psychic vampire couch is in pieces in the upstairs hallway while I figure out exactly where everything is going to go. :)

Topless!

I've been going out in public without a scarf or hat or wig or anything for about a week now. All of my coworkers have commented that they really like the 'do, and several have said they prefer it to long hair! Weird, huh?

Anyway, I'm getting used to it. I think it'll be nice to have shorter hair during the summer months, when everything's sticky and humid. And it's so fast to get ready for work. And it never leaves a wet blotch on the back of my shirt!

I went for my annual checkup and the doctor suggested rubbing moisturizer into my scar 50 times daily - apparently the rubbing action causes the scar tissue to dimish and become less visible.

Next week I go to see the genetic oncologist to talk about my family history. I'm a little confused about the purpose of this visit, since I've already been through it with the genetic counsellor, but I guess I'll see. And I wind up getting the afternoon off work.

I may head up to Toronto to help my sister choose a wedding dress on the July 4th weekend. Attention friends in Toronto, this means I want to see you! ;)

Hairy Potter

My hair is pretty much long enough that I could lose the scarf, but I'm wearing a bandana today because I thought it looked too freaky with the sun reflecting off my scalp (it's not THAT long after all). I'm thinking I'll go bareheaded this weekend though.

I have to give props to Lisa, my super hairdressing guru, who recommended this particular shampoo/conditioner/leave-in treatment. I really do think it made me hair grow faster (of course, how many times have I cut all my hair off and seen how long it takes to return?) (That's a rhetorical question).

So right now my haircut looks rather butch. But as soon as it's long enough, it's Pat Benatar city! Woohoo!

I can't believe how much time short short short hair shaves (pun intended) off in my getting ready for work routine! 2 minutes after I'm out of the shower, my hair is dry and I'm good to go.

Since the weather has finally warmed up here, our cat is shedding. Plus, I've been taking her on "walks" (well, more like "sits") outside and she's terrified of the traffic on Weston Street. It's also known as Rte 20... it runs from our house to Buffalo. Well, technically it runs past our house to some unidentified spot to the east(ish). Gotta love living in a city that was built before that whole "grid layout" thing caught on. Anyhow, in her fear, Penny sheds fur like nobody's business.

Monday is the Boston Marathon, which is a big deal at my office. We shut down at noon for a big cookout and to watch the runners go by (they go right down Washington Street, where I work). Usually, by the time we get out there, the leaders of the wheelchair pack have gone by, but there are still some swooshing by. Man, those things go fast. Wouldn't want to hit a slightly raised manhole cover at those speeds.

And then, a while later, the runners start appearing. They don't seem to be moving fast (after the wheelchairs), but they're very skinny in that endurance sports kind of way. You know what I mean. It's spooky to be eating a burger watching them go by. You feel like they might prefer that to one of the boring cups of water.

They'll need water this year - the weather forecast is calling for sun and lots of it. 75 or 80 degrees Fahrenheit, I heard. Last year it was damp and cooler. Not much fun for those of us watching, but probably better for the racers.

I feel like I know one of the runners. The guy who created the Fuck Cancer mugs that I thought were so funny is running, I guess (at least, so his online diary says), so I'll keep an eye out for him. Wonder what he likes on his burger?

Blue Genes

I went to the genetic counsellor today. We plotted out my family tree and noted who died when and of what. She said 90% of all colon cancers cannot be traced to specific genes. 30% are suspected to be caused by a gene they haven't located yet (showing up in successive generations, etc.) and 60% are "sporadic". Those are probably caused by environmental factors. It seems to me like almost everything is claimed to be carcinogenic these days!

Anyway, she recommended that I *not* have expensive ($2K) genetic testing done, due to the expense and the fact that cancer doesn't seem to run in my family (in fact, a reassuring number of my ancestors lived to ripe old ages!).

However, because I am young to get it, and cancers caused by inherited factors tend to hit younger than those sporadic ones, she suggested they do another kind of test (less expensive) on some of the cells from the tumour. I guess they look for the presence of proteins normally produced by specific genes - if there are no proteins, then the genes are probably screwy.

All cancers are caused by genes to some extent, because that's what cancer is - one or more cells somehow wind up with inexact copies of the genetic instruction book, causing them to be unable to fix themselves, or other cells, and then when they divide, they make more cells with messed up genes. Because we carry two copies of each gene (one from Mom, one from Dad), usually, there's a back up to prevent problems like this. But if you start off inheriting one messed up gene, then you're on the high wire without a net, and are more likely to get cancer young.

I don't know if I explained that half as clearly as the genetic counsellor did. Anyway, she's going to investigate how much this other testing costs.

The main thrust of the discussion with the counsellor was that my relatives should all get colonoscopies. My cousins aren't as much at risk as my aunts and uncles (by blood, not marriage!), and grandparents. My parents and sister are the ones who need the colonoscopies most. Dad's already had one (they found one pre-cancerous polyp, which is about normal for a 59 year old) and Mom and Steph are having theirs at Easter. Sort of a mother-daughter bonding thing. What can I say? Weirdness runs in our family, even if cancer doesn't seem to.

Anyhow, if there are any of my cousins reading this, urge your parents to have colonoscopies! In the US colonoscopies are recommended for anyone over 50. I think the recommendations are much more lax in Canada, in fact I think Steph's doctor tried to talk her out of it, if I remember correctly. But it's your health, and no one is going to look out for your health as much as you should! Colon cancer is very curable, if you catch it early! And colonoscopies are fun compared to chemotherapy. Trust me, I know. They give you the good drugs.

Speaking of family, we're going to have an addition to our family! No, Mom's not getting her wish for grandkids, she's getting another son-in-law. Shayne gave Steph a ring on Saturday. :) Good Shayne. You get a cookie.

Awareness

Mom told me she'd caught the tail end of a colon cancer special on the Sharon Osborne show. It is colon cancer awareness month, after all. I'm not sure whether money is better spent on research or awareness campaigns. I guess awareness campaigns generate funds for research indirectly. Anyway, it suddenly occured to me how much I'd learned about cancer due to all the stuff that has happened over the last 6 months.

Not only have I had an anatomy refresher course (the iliocecal valve is connected to the colon, the colon is connected to the rectum, the rectum is connected to... let's not go there), but I've learned a lot about cancer treatment.

I guess because "the big C" was such a taboo subject in recent history, I never really knew how treatment worked. I didn't know the difference, for example, between chemotherapy and radiation therapy. Chemo is treatment with drugs (hence the name - chemo/chemicals), as opposed to radiation which is treatment with... radiation. Duh.

And I figured chemo was chemo. You give the patient some drugs and they either get better or not. But for each kind of cancer there are multiple drugs and combinations of drugs, and schedules of administration that could be used. The drugs I had and the schedule I was on were chosen because they were the least likely to have severe side effects (of the drugs found effective with colon cancer, which are not the same as the drugs found effective for breast cancer).

And the whole hair loss thing. A lot of people figure hair loss is par for the course when you're fighting cancer. It's not. In fact, the drugs I was on generally only cause hair thinning in a portion of the people who take it. Some people don't lose any hair. Some people (like me) lose lots. It depends on how well you tolerate the drug. Other drugs can cause some people to lose all their hair (including leg hair and eyelashes!).

Some people are able to take their chemo in a pill form, others need an IV hooked up for a few hours, and some (like me) get theirs as a simple "push" injection.

Some friend tried to tell my grandmother that radiation treatment was done by wheeling folks into a room, and turning on the radiation, like a light switch. The attendants would turn it off to bring them lunch and dinner. What a concept!

I don't know much about radiation, since I didn't need it. It's not very effective on the ascending colon (on your right side, between the hip and the rib cage), I'm told, because that part of the colon, where my tumour was, is very flexible and tends to move around, so they can't aim the radiation very well. The flexibility is also probably one reason why my cancer had spread to so few lymph nodes (only one).

Speaking of lymph nodes, they're found in various parts of your body, but are in clusters in the groin, neck and armpit. They produce immune cells. The lymph nodes are the first place the cancer spreads when it leaves a tumour, and having less than 2 lymph nodes with cancer is considered the same as having none with cancer. Then it travels via the lymphatic system to other organs.

There ya go! Now you're smart like me! :) In our next lesson we'll be learning all about cluster flies! Whoohoo! I know you'll be waiting with baited breath!

I Can See Clearly Now

Today is my first day back wearing contacts. I brought solution, a contact lens case and my glasses to work. I still had one pair of lenses left from before X-mas (I wear disposables). It makes such a difference to be able to see when you're showering. And it's nice to be able to see my eyes again when I look in the mirror! Plus the St. Paddy's Day green brings out the green in my eyes. I match!

I hope you are all having good St. Patrick's Days and are wearing your green. Of course, that's a pretty big holiday here in Boston, what with all the Irish. I learned a new insult from an Irish friend here: "Two-boater". It means someone who took a boat from Ireland to Canada and then moved down here. Apparently there's something not as classy about that compared to taking a boat directly here. Sounds suspicious to me!

My hair is steadily coming back. Still brown, still straight. I cut off all the straggling remnants of the strands that didn't fall out. They were wispy and probably in poor health anyhow. It was very liberating to be able to trust in the fact that my hair is coming back in normal!

I'm wearing my new green head scarf today. I made it my very own self! I went to the fabric store and got fabric, sent off to Singer to get a new copy of the sewing machine manual, and cut the fabric into a triangle and hemmed it all nicely. Well, okay, maybe nicely is an overstatement, but I hemmed it, dammit! In green thread, no less! The other two bits of fabric I bought are blue, but I don't have blue thread. Hmm. Might scavenge some from the various hotel-supplied sewing kits I have kicking around. The machine was extra tricky because it has "wind in place" bobbin. I got it from Singer for $100 because it's an overhauled machine. I bought it in a surge of ambition to make a dress. Didn't make it.

We got a ton of snow here yesterday - about 6 inches at our house, I think. It's no fun having winter when it's supposed to be spring! First day of Spring is Saturday, and we're to get more snow on Friday! How fair is that? We had spring-like weather earlier this month. Speaking of spring, I really have to start my seedlings! I bought all sorts of seeds last year and what with one thing and another, never got around to planting them. Some of them have to be started indoors, so I should get on that before it thaws and it's too late.

I went through my old cosmetic bins last night and chucked all my old lipsticks and eye makeup. I had stuff dating back to high school! Whoops! Definitely not good to use. I also, for reasons that mystify me, had two (TWO!) cordless curling irons. Considering how little use I have for curling irons in general, having two seems like a bit of overkill. They're going to Goodwill later this week.

And now it's snowing again! ARGH! There oughta be a law!

Spawning Season

Well my cousin Bruce was the last of Uncle Bob's kids to reproduce, and the first to have a boy. Little Robert was born on the 7th. He's very cute and there are some photos up online. Apparently this was reproduction week and no one told me, since my buddies Shag and Chantal sent this picture of their toddler, Hailey. Note the shirt.

My parents are coming to visit this weekend. They arrive this afternoon at about 3pm. They finally get to meet Penny the Chemo Kitty (although she really isn't a chemo kitty anymore, since I'm done (someone stick a fork in me, I'm done!)). It's supposed to be sunny, but not particularly warm. Our house was frigid this morning and I'm nervous that there's something seriously going on with the heating system. Good thing Dad's coming this weekend. He'll glue it until it's better! ;)

I've been working this week to set up an appointment with a genetic counsellor at Beth Israel Hospital. Most places, you call, talk to a receptionist, pick a time, and you're good to go. Not here. First you call and then it takes a week of telephone tag to get ahold of the person booking the appointments. Then she says that since I've never been to Beth Israel Hospital, I need to get a patient record number, by calling admitting. That'll speed the appointment process.

Admitting doesn't answer their phones. After two days of multiple calls (and messages, I finally catch someone there and she says call back in 1/2 an hour. I call back, she asks if she can call me back in 5 minutes. At this point it's 5pm and I'm going home. So I tell her to call back in 20 and to my home number. Which she does, predictably when I'm using the... uh, facilities. Then I call back and leave a message then she calls back and finally takes my info. She didn't ask for my insurance card info, just my address and date of birth and employer. Tell me I couldn't have just left that on the machine.

And her computer gives her grief when I won't answer the "what's your religion?" question. They don't have the United Church of Canada here and besides I think the last time I was in one was more than 5 years ago for Shelley's Wedding. Finally she just puts "Other". And I confuse her when I state my race to be caucasian. She says, "your choices are white, black, hispanic, native american, native alaskan..." etc., etc. Apparently she doesn't realize that Caucasian generally means white. But I finally got a record number and left it on the voicemail of the appointment lady. We'll see how many eons pass before she calls me back.

My good deed this week was to donate a pair of my old glasses (really ugly) to a missionary outbound to Nicaraugua. I don't know his religion, but what the heck, maybe he can find someone who can use them.

Screw You Guys, I'm Going Home

My CT scan came back fine - nothing weird going on in the colon neighbourhood. So I don't need to go back until August for blood work! YAY! The hair is coming back in, but it's very fine so far. And does not appear to be either blonde or curly. :)

Not much else is new, but thanks everyone for their kind comments. Thanks especially to Molly McMaster, Pat Hall, Jodi Sax and all the other cancer survivors who've emailed me for their support, advise and commiseration.

Congratulations to my cousin Bruce for his new baby boy, Robert, born Sunday. Hey, since I'm done chemo, I can finally see Jason's cousin Marcie and her baby Rhiannon again! Woohoo! I couldn't visit before because Rhiannon's in day care and brings home colds. Poor kid.

Jason, you can iron your own damn shirt. Besides, I'm not sure where the iron is.

Expect the Unexpected

I went to the hospital for my chemo treatment today, dreading having to suck on ice and the foul taste in my mouth that comes when they inject me. I got a pleasant surprise however. The doctor wanted to speak to me. He said since the drugs seem to be so hard on my body, he wanted to end the chemo early. Like now.

I guess the drugs work better when your immune system is strong. The stress from the various side effects was kicking the poop out of my immune system. Also, the maximum benefit comes from the first few treatments, so this will only raise my chances of having recurrent cancer by a percent or so. Considering chemo had dropped those chances by about 12-14%, that's not bad. And because the side effects are cumulative (they get worse over time) my immune system would be getting less healthy as time went on, and therefore the drugs wouldn't work as well. So we probably wouldn't have got down that last percent anyway.

It's so weird. I've been planning my life around having another three months of chemo and now I feel like the floor has dropped out from under me. I'm not complaining, mind you, but it's odd. I've been saying things like, "can't plan any vacations until chemo is done" and "don't want to renovate until I've finished chemo". And now it's all wide open.

Can't wait for my hair to come back. Scarves are nice, but hair is better.

1812 Overture

All last week my stomach was tuning up for the 1812 Overture. And practicing being tied in knots. I was running to the bathroom far too frequently for comfort. So the nurse and I decided that we'd give last week's chemo treatment a miss. I was really feeling pretty wretched. She had the doc prescribe something that's like Imodium only stronger, but it didn't seem to help. Then, suddenly, this morning I was fine. Weird.

The stupid thing is, I was going to send Jason to pick up a new prescription for even stronger drugs today. I'll just have the hospital keep it around until I'm by on Friday for the next treatment. My theory is that the pancakes I had for dinner last night (it was Pancake Tuesday after all) cured what was ailing me. Behold, the power of pancakes!

I missed work on Monday. I've got a call in to the short term disability folks to see if I can get paid for the day. They were trying to tell me I needed to resubmit a claim, but I was stubborn and insisted they already had the info, I just needed to add a day to it. The claim form has to be filled out by me, my boss and my doctor. A lot of work to go through just to get a day's pay. But dammit, I'm entitled. :)

I also worked on our taxes today. Can't find my W-2 form from work. I vaguely remember receiving it, but god only knows where I put it. I've got to do a major search of the living room and my office, to see if it was filed somewhere safe. Grrr. Not eager to make them reissue it, if they even can. Not sure what the rules are about that.

Other than the tummy troubles, I've been fine. Even noticed some stubble growing back on the top of my head. At least, I presume it's growing back. When hair falls out, it falls from the root, it doesn't just break off. Normally. But then again, when have I been normal? It's over-rated anyway. But with luck, I may be able to go scarf-less by the time it warms up outside (which is good, because I think it'd be hot).

Jason's going away this weekend on another documentary trip so I get the house to myself. Well, myself and the cat. Who was trying to help with the tummy troubles by variously sitting on me, climbing over me, sleeping on my pillow, next to me, and lying on my left foot. The right foot's the foot of the soul, the left is the foot of the kitty. Now you know. It's the new reflexology rules (OK, I made that up).

I'm sending out happy February cards, honest, I just have been lazy. I'll put them together and get them in the mail tonight, but don't expect long personal messages. You'll be lucky to get a complete address label. ;)

Only one day off work means I didn't have too much to catch up on. I'm pretty much ready to roll and the month end stuff is all done. Maybe I can take the rest of the week off? Maybe not. I kind of like having a paycheck. :)

Hope everyone else is doing good. I'm just going to spread good vibes in everyone's direction, since I have some to spare today.

Not Dead Yet!

I'm still not dead yet. Just in case you were curious. Feeling good, working for the 4th week in a row (which is a first since October's surgery). Obviously things are under control since I have the time to publish this entry that simply says I'm doing well. Kind of a lame thing to have to post, hmm?

Well, okay, I'm still losing hair. And my skin is still dry as the desert. And my scalp too, which is weird. I'm debating whether I need to use more conditioner or try and get moisturizer to the bits where there's no hair (moisturizer on the bits with hair would be greazy). My lips, however, are only slightly dry and are almost constantly encased in a layer of vaseline. :)

I'm now doing the once a week chemo experience, spending most of Friday afternoons at the hospital. That's fine, nothing good happens Friday afternoons at the office. This round, I remembered to bring magazines, since last time all their magazines seemed to feature food, and since I had a doctor's appointment before the treatment, I'd missed lunch at work. And I spend all afternoon there sucking on ice to prevent another visit to lip hell.

Still not wearing the wig (the returned ones are going out in the mail today). I've found the perfect scarf, now all I need is about 10 like it! Quick, everyone go raid your grandmother's scarf collection! :) It must be time to dust off the sewing machine and go to the fabric store. I guess I could knit a hat or something. Jason's cousin Marcie taught me to knit in late November, but I haven't really caught on - my stitches would make a cat laugh (except that Penny's laugh sounds like meow). Crochet is much more my style, because coordinating two hands at once is beyond my ability. ;)

Happiness is Marineland

For some reason I have the jingle from the ads for Marineland (in Niagara Falls, Ontario) in my head this morning. I'm feeling very good still. No side effects from the last treatment, which makes me very happy. I've been at work all week, tag-teaming with the temp, who is 6 months pregnant. We've been comparing symptoms, etc., and I've decided pregnancy is a lot like chemo, except that you get a baby at the end of it, and I just get a clean bill of health. :P

Watched Conan O'Brien last night (taped Tuesday)! He's in Toronto! Mike Myers made all sorts of Canadian references. It was almost as good as being there. They're at the Elgin, which is just down the street from my former apartment and my watering hole of choice, Riley's. Wonder if anyone I know is teching for the show? Stompin' Tom was on the show last night, so I'll have to watch the recording when I get home from work.

To keep the temp busy, I've been having her do all my hated filing. Blech. We've now updated the files for all the incoming tenant complaints for 2003. I'm sure you care.

Tomorrow is another chemo treatment, and hopefully this one will be as pleasant as the last. Or at least the side effects will be as pleasant. The actual treatment wasn't particularly pleasant (sucking on ice for a couple of hours is really not fun when it's already cold out and your arm is especially cold due to the chilled fluid they're pumping into you). This time, though, I'm bringing a book. Had to read Women's Day and Better Homes and Gardens last time, and every article seemed to be food-related. And I was hungry, since I'd missed lunch. No so much fun.

This morning work is holding a "Tenant Appreciation Breakfast", which I get to attend. In a skirt. Thank god for tights, since I'm not supposed to shave my legs (potential for infection, not to mention that the skin is super sensitive just now), and my leg hair hasn't obliged me by falling out. My head hair is still falling out, and none of the wigs are very comfy, but maybe I'll wear one today anyhow. Eventually, I'm sure, I'm going to have to shave my head, but I can't bring myself to part with the remaining 4 strands. Okay, I exaggerate, but still!

All right, time to go get dressed and ready to take on the world. Or the croissant. Whichever I encounter first!

Insurance Companies Suck Rocks

The bills for lab work done on the biopsy and the tumour came in. My insurance company (well, actually, Jason's through his work) is claiming that the amounts are unreasonable and they're only going to pay the reasonable amount. The rest is my responsibility. The incredibly unsympathetic woman on the phone basically kept restating that they were unreasonable amounts and had she helped me at all. Um, no, not at all, you witch!

I have a call into the pathology people telling them my insurance says their amount is unreasonable. Never mind that they really had a good look at the tumour because it's so rare to have one in a 30 year old with no family history. I'm so mad right now, I could spit. Well, not really. Still have that dry mouth thing going on. But you know what I mean!

I just called them back and talked to a nicer person. Told him that I'd already met my maximum out-of-pocket for last year (usually the plan covers about 90% of the charges, and I pay the rest, up to $500). He said that since they were an out of network provider there might be a problem trying to get the rest paid, since it's over their supposedly reasonable amount. I pointed out that I was unconscious so it's not like I had the option of sending the work to an in-network provider. He's sending it for a second review. Granted, the whole amount only adds up to about $110, so it's not going to bankrupt us, but it's annoying.

My newest wig arrived (the others are going back), and it's a bit on the bouncy, lots of body side. But it's not bad. The headband is kind of tight. Today I'm just wearing a scarf. The hair loss seems to have reached a plateau, or maybe there's just so little left to lose that I'm not noticing anymore.

Jason's company, Cable & Wireless USA, was bought last week by SAVVIS. Not sure who they are, or who their insurance company is, but they're assuring us that their plan is very similar to the existing insurance coverage. Wonderful.

Well, now that I've vented my spleen, I feel marginally better.

Corny Cornea

I had my annual eye exam yesterday. Explained all about the chemo and the pink eye and that I haven't been wearing contacts since the pinkeye. The doctor looked at my eyes and announced that my corneas were so dry they were chapped. In fact, they have pitting and little holes in them, which is Very Bad(tm). He said they were sub-clinical infectious. What does this mean? My eyes are itchy.

He told me to use the antibiotic goop I got from the emergency room every night and gave me antibiotic drops to use during the day. Also gave me a sample of artificial tears to use between applications of the drops. Do eye doctors spend all day in the bathroom squirting stuff into their eyes or what?

And because this is likely due to the chemo (hmm, unusually dry skin, exceptionally dry and chapped lips, and now my eyes are dry? Sounds like a trend. Dry is the new wet, you know), I'm not allowed to wear contacts until after I'm done with the chemo. Bummer.

At least I saved the "contact lens fitting" fee. That's gotta be the dumbest fee ever. I've been wearing the same brand of contacts since I was 16. My prescription has changed, but they still feel the same in my eyes! I think I'll skip that part in the future, if possible.

Since I'm a glasses-wearing lackey for the next few months, I elected to get some prescription sunglasses. I also had the prescription updated in my ordinary glasses (and this time got the anti-glare coating), even though it wasn't that far off. The lack of anti-glare didn't really concern me when I wore the glasses once a month, but it's an issue now that I'm wearing them constantly. Same with the new prescription. Everything is that much clearer.

I have to say that the staff at the Lenscrafters at the Burlington Mall were fabulous. Helped me to find decent inexpensive frames for the sunglasses, and rushing the regular glasses through so that I didn't have to wander the mall blind. Something that Nick (the manager there) pointed out to me really hit home. When you buy designer sunglasses, a lot of what you're paying for is the lenses. But if you have them replaced with prescription lenses, then you've just wasted a bunch of money. Good call, Nick!

I also went and looked at the different countertop materials at the Expo Design Center. I'm really leaning towards Silestone. It feels cold like stone, but doesn't have the kind of variations you get from piece to piece in granite or marble. The kitchen remodel may be on hold, but that doesn't mean I can't think about it.

Well, time to go squirt junk into my eyes again. Hope everyone out there is blinking in sympathy!

Human Again

Well, everything's pretty much healed, now that 3 weeks have passed since my last treatment. I've rescheduled my next treatment (on the new schedule) to Friday of next week so that I can recuperate over the weekend. Hopefully the side effects will really be much weaker, because I'm very tired of not going into work.

The only remaining side effects I have from the last set of treatments are a drippy nose and exhaustion. I've been going to bed at like 7:30pm and waking up tired. Granted, it could have something to do with a certain kitty cat waking me up at 5:30 to walk her downstairs to her food dish (which is full, I think she just likes the company). She did the whole sleeping on my shoulder and rib cage last night again, and I learned a valuable lesson: always keep your blankets pulled up to your neck, otherwise itty bitty kitty claws will embed themselves in your shoulder, making it hard to sleep.

We have a cleaning lady who comes every two weeks to help me keep up with the house and this week she not only tossed a load of sheets in the wash for me, but she also cleaned out the kitty litter. Some people are so darn nice.

Speaking of nice, Jason's cousin Andrew came over and shovelled for me the other day. He left a message on the machine while I was at work telling me to call him if I needed the driveway shovelled. I called him to say that there didn't seem to be much snow on it so he didn't need to come and he revealed that he'd already been there (which was why there was so little snow on it). Oops.

New wig still hasn't arrived. I'm beginning to wonder if it will. Hmm. If it doesn't, of course, I'll be able to get my money back through Visa at the very least. In the meantime, I'm kinda liking the scarves. Not itchy and they keep my head warm. Which is a good thing in this weather.

My sister sent me a book and a magazine of puzzles. I'll have to take them to chemo with me next week so I have something to do for the hours I'm there. It's her birthday tomorrow so everyone can wish Stephie a happy birthday.

I'm really kind of dreading the next chemo regimen. I don't want to have the horrible side effects again. I don't want to have to miss work and then spend time when I return reassembling everything from the chaos. Hopefully this new schedule will mean fewer side effects because I'm getting treatment in one lump sum. Hopefully it won't mean that I'm consistently feeling squicky (technical term).

Tomorrow I go for my annual eye exam. With luck, the opthamologist will say I can wear my beloved contacts again. Regardless, I'll be able to get my glasses' prescription updated, and if I'm not allowed to wear contacts I'll invest in a pair of prescription sunglasses. The winter sun is at a blinding angle in the mornings when I'm on my way to work. Other than that excursion, I think I'll hibernate this weekend.

Organization is key, or something.

I'm slowly getting things at work put back together after my absence. The combination of having both a staff member's wife and a temp fill in for me made things a tad confusing, but I'm sorting it out. The VP and I are getting the short term disability forms sorted out and I'm catching up on the office gossip (you'd think with such a small office there wouldn't be much, but close proximity can really set people off).

We're expecting some serious snow tomorrow, so I've alerted Jason's cousin Andrew that I may need help digging out from under. Jason is still off doing documentary stuff. If it's really bad, I'll call work and say I can't get out, and maybe they'll send one of our sister company's snowplows to plow me out. Or gosh, I just could stay home. I rarely ever do that, after all. :P

I think the cat was seriously disturbed by my absence during the day yesterday. She was completely manic (maybe she'd been nipping into the catnip), and followed me everywhere. I disturbed her by actually using the oven to reheat some chicken fingers for supper. And then she sat next to me and tried to use the infamous Kitty Stare to coerce the chicken her way. Didn't work. Poor frustrated feline. She's also still fascinated by the stair ballusters (poking her head through and looking at me). She spent part of the night sleeping on my shoulder and rib cage (I was on my side), with her front paws massaging my neck through the blankets. Weird cat.

Most of the side effects are gone, aside from gummy mouth, strange sense of taste and drippy nose. The drippy nose is a nuisance, as I leave scads of used tissues in my wake. Entire boxes of kleenex have gone to their moderately slimey deaths because of me in the last couple of weeks. I'm keeping Puffs and Kleenex in business, I think. I like the 3-ply ones with lotion.

Oh, and my eyes are itchy and red! Not pink eye (I hope), just dry eyes. At any rate, I have an optometrist appointment on Saturday. Maybe I'll get to wear contacts at some point in the foreseeable future. That'd be nice.

Most of all, what I'd like right now, on a cloudy Tuesday afternoon at 1pm, is a nap. My eyes just want to close, and my brain says, "do something dull and repetitive, because otherwise you'll just muck things up". Yeeessss, brain.

Back in the saddle again!

Well, I'm back to the grind at work. Still feeling pooped far too easily, but fortunately, there's a lot of really basic stuff to catch up on. They were going to have the temp come in today as well (they got a temp to cover for me last week), but she called in sick, if you can believe it.

My lips aren't fully healed, but definately are healed enough not to scare people when I go out in public. My mouth still feels all gummy inside and I can't seem to make that go away. Ginger ale tasted odd. Sprite tasted awful (one sip and I had to pour the rest down the drain) and Coke products still taste weirdly metallic. Water just isn't cutting it and milk seems to make it worse. Perhaps orange juice? I'll have to try that tonight.

I've lost some weight because of the chemo, but not so much that my clothes are fitting different. At least not that I've noticed. I figure I've lost the pounds from my spleen or some other really useful and not at all visible place. My appetite still isn't really back. I've been buying sweet things because they seem to taste all right and really do tempt me. Maybe I'll make one of the Omaha Steaks burgers tonight.

It's only 1:30pm and I feel like it's nearly five. Obviously I'm not at full fighting strength yet. I've filled out the form to see if the insurance folks want to pay me short term disability for my absence in December. I guess I'll have to fill out a second one for this past couple of weeks? Ugh. They don't make it easy.

Heal! Dammit, Heal!

Hallelujah, my lips are finally healing. They're not completely healed, but today I can say words with M in them without feeling like my lips might never come apart again. Montesorri Muscrats Mainly Move to Maine. I have been breaking open Vitamin E gel caps and the goo inside has proved to be an awesome lubricant for lip bits stuck to teeth or other lip bits (sorry, sorry, TMI). And I think it helped healing. Or at least made me feel like I was doing something useful.

I think the most frustrating thing about this whole chemo experience is that everyone keeps telling me that I should give it time. Everything will heal, the hair will grow back, etc., etc., in time. Great. Not what a not-very patient person wants to hear. I want the magical cure. And I want it now. Even better, I want it yesterday.

Today was the first day I left the house in 2 weeks (not including my trip to the hospital to complain about my lips in person last Friday). We were out of kitty litter and Jason's in a tizzy getting ready for another documentary trip so I went to Petco. He's flying to Chicago, then driving to Dallas or Houston. I know, I know, I knew he was nuts when I married him. But still, this seems a bit insane, even for him.

One of the other fancy dancy items I picked up at Petco (besides the ubiquitous kitty litter) was a collar with a bell. When they say cats move on velvet feet, they were definately talking about Penny the Chemo Kitty. She's not thrilled about the bell, but at least we can keep track of her now, and she can't sneak up and scare the bejesus out of us (yes, that's a technical term).

Speaking of which, she's discovered how to open the door from the kitchen to the hallway. The second floor has now been annexed by the country of Catvania. Last night she appeared in the master bedroom and hopped on the bed. At one point, when I was sleeping on my stomach, she was curled up on my back. Very weird. But then, what did you expect from a cat living with us?

Jason got me a Rio Cali portable mp3 player/radio for Xmas. It's very cute and very small (fits in the palm of my hand). Only problem is, the software doesn't work with WindowsNT, my beloved operating system that rarely ever bluescreens (which sets it apart from every other Windows OS as far as I can tell). My PC is also currently sans speakers, so I can't listen to the mp3s that are on it. But never fear! Laptop is here! Running XP, so that the software works. Hooked into our home network via a very unhappy ethernet cable stretching from somewhere in the nether realms of the basement. So last night I had fun deciding what to put on the Rio (everything!).

Since my lips are healing, I've been using today to make all the calls I've been putting off. The call to the insurance company (the one who covers our health care through Jason's work) to find out why they're not paying for my biopsy analyses. They claim that the lab isn't part of their network, but the hospital, where the cells and tumour were removed is a part of it, and it's not like I had a say in where they sent them to be analyzed.

Then I called the other insurance agency (the one who covers me for diability through my employer) to find out whether I needed to file more paperwork to get my absence from work in December qualified as "short term disability" (which means I get 60% pay, instead of nothing). Answer: yes. Phooey. Also, my absence for these past two weeks will need to be accounted for. I used my 5 precious personal days to cover last week, but maybe I can somehow gain them back by having the week declared part of my short(ish) term disability. Argh. Stupid privatized health care. Not that I know how I'd fare back home in Canada, trying to do short term, on and off, disability. Probably have to fill in some form in quadruplicate and file it in Ottawa. Personally. With my passport, Health Card, and 6 notary publics (3 French, 3 Bilingual) on hand.

I have to admit, I'm somewhat disappointed with the wigs I ordered. They look so... wig-like. I mean I've never been one to overly fuss with my hair (hell, if I remember to brush it before leaving the house, I figure I'm doing well!), and these look... fussy. I'll probably return them (I have 60 days to decide). So I found a place that sells plain old hair attached to headbands and we'll see how that works. The American Cancer Society's TLC catalog carries something like that (it's really a velcro strap with some hair hanging from it, meant to be worn under a hat or scarf), but they only have it in stock in grey. Um, so not me. Thanks anyhow.

The ladies at work who've been through chemo (there's 2) both say their hair came back grey. Not cool. I am so not thrilled by that thought. Still, both of them have kids my age, so maybe it's an age-related thing (I hope!). Maybe mine will grow back cobalt blue, and corkscrew curly! Hey, I can dream, can't I?

Don't crack a smile

So, the lips are not improving any. Hair is still falling out, at this rate I'll be a cue ball by the end of the month. Appetite is back, but eating is painful, so I'm attempting to avoid it. This is not helped by Jason cooking one of our Omaha Steaks burgers in the other room! He offered to make me a burger shake. Not funny at all. Especially since it made me crack a smile which hurts. Get it? Crack? I know, I know, I shoulda been a comedian.

I went to the doctor yesterday. Car wouldn't start because the cold zapped the battery or something. The doc gave me some stuff that's supposed to make the lips heal faster (GelClair) and some painkiller spray that's ten times stronger than the goop I was using before. They're going to change up my chemo regimen to once a week, every week, for 2.5 hours, and hope that's somehow better than 5 days in a row and then 3 weeks off (how it could be, I'm not sure, since it sounds like the dosage is the same). All the nurses reactions were the same, "Oh, you poor thing." Don't tell me I'm a poor thing, sign me up for a lip transplant! The doctor suggested I could have a new career as a ventriloquist, I'm becoming so adept at talking without moving my lips. Ha ha. Very funny. Gimme the painkillers, doc.

My Dad offered to fly down here to keep me company (Mom's visiting Grandma in Calgary) but I told him I'd only be tempted to talk (which hurts). He offered to just come down and hold my hand (c'mon everyone, "awww!"), but since I know he'd fidget like a 2 year old in need of a bathroom just sitting round here watching me heal (slightly more exciting than watching grass grow, but only because we've got a TiVo), I turned him down. I guess Toronto (where Dad is, for those of you who haven't been keeping track) has gone through a major cold snap (-38 with the windchill... at that temp, it doesn't matter if it's Fahrenheit or Celcius, it's just damn cold!) and random water mains (including the one on their street) have burst. Yuck. Makes my car issue look puny, eh? Anyone who makes fun of me for saying "eh?" can just shut up. I was tempted to edit the "eh" out, like I do mentally when I'm talking to American friends, but what the hell, I am Canadian and I have cancer so you can just fuck off. So there. Ha!

Sorry, I'm ravenously hungry and therefore a weensy bit testy. Jason has gone out to procure more of the insidious Carole Nelson Douglas books and a vanilla milkshake. I sent him to Kate's Mystery Books, one of the best places to find obscure mysteries that are out of print, or just not stocked elsewhere. The people there are really nice and able to recommend books that fit my taste. They'll even advise against books by authors I know, if they think that I won't like them. They also stock used books, which appeals to my (occasionally) frugal nature. Sure, I could go to the library, but considering I've procrastinated for over a year on getting a library card, what makes you think I'd get around to returning anything I checked out?

So I'll keep using the GelClair, and hope that my lips heal enough that I can return to work on Monday, or at least eat some normal food someday soon.

Here we go again...

So I didn't get back to work on Tuesday. A few hours after my last posting, I was getting ready for bed, and suddenly felt ill. I wandered into the bathroom to dampen a facecloth in the hopes that the cold would help my tummy settle down, and moments later, I was praying to the porcelaine god. As a veteran carsicker, I've never gone from 0 to 60 (fine to not at all fine) so darn fast. It was pretty darn unpleasant.

work on Tuesday. A few hours after my last posting, I was getting ready for bed, and suddenly felt ill. I wandered into the bathroom to dampen a facecloth in the hopes that the cold would help my tummy settle down, and moments later, I was praying to the porcelaine god. As a veteran carsicker, I've never gone from 0 to 60 (fine to not at all fine) so darn fast. It was pretty darn unpleasant.
Tuesday dawned and my lips were worse. Swollen and unpleasant looking. So no work for me. I'm hoping maybe next week. Swallowing isn't much fun, since my tonsils are still swollen, but I could deal with that if it weren't for the nasty lips. I've got a canker sore right under my tongue, where it connects to the bottom of my mouth (I'm sure there's a technical term, but I don't know it, and you wouldn't know what I was talking about), but I could deal with that if it weren't for the nasty lips. My hair's still falling out, but I could deal with that... you get the picture.

I've finished my course of cold sore drugs and they seem to have done nothing (nada, zip, zero) for my lips. I want a refund. Or at least a lip transplant. If this is anything like the nastiness people go through with collagen injections, I can't see that it's at all worth it. I called my doctor and he gave me stuff to numb my lips and suggested that I set my alarm to wake me every two hours at night so I could reslather the vaseline - that would heal them faster. Oh good, so I'll be tired and my lips will still be skanky. Just the news I wanted to hear.

On the other hand, this time off work has allowed me to catch up on the various shows Tivo has recorded for me. Clean Sweep, the BBC version of What Not To Wear, Good Eats (of course) and The Apprentice are my current favourites. And I've been reading, of course. Carole Nelson Douglas' Midnight Louie mysteries. They're not that great, but they're better than a kick in the head.

Jason's cousins Mark and Marcie got us a gift from Omaha Steaks for Christmas. I'm not sure what they got us, since I'm not willing to tempt myself by looking in the freezer (it hurts to eat anything solid). But pretty much everything from there is good. Imagine that, dead cow, ordered online and delivered to your doorstep (packed in dry ice). It's like the magical Beef Fairy visited my house! Can't wait until my lips heal and I'm able to cook some of that stuff.

I'm totally digging this laptop of Jason's. I've got a wireless keyboard and mouse for my desktop and they seem to be somewhat tempermental, ie. they randomly refuse to respond. It's extremely annoying. I'm willing to put up with the weird little touchpad mouse thingy on the laptop because at least it always responds, even if it doesn't always go where I'm trying to put it.

I'm currently using the wireless ethernet that came with the laptop. We're tapped into some neighbour's bandwidth. And it's definately not a T1 connection, because it's damn slow (bad neighbour! No cookie for you!). I should hook up to our LAN, but the cable is on the other side of the room and it won't reach to the couch.

Ice Age

Another round of chemo treatment over and done with (5 days of treatment, 3 weeks of side effects, for those of your playing along at home) and in spite of sucking on ice before (in the car on the way to the hospital - oh so much fun during the recent cold snap in Boston), during and after the treatments, my lips are a mess. The theory is that the ice reduces the blood flow to the mouth. Great theory. Unfortunately, no one seems to have informed my mouth.

Hair update: Still falling out. I have a real comb over thing happening just now. I bought a couple of wigs from the American Cancer Society's TLC catalog, but one has to go back as it's not the colour I thought it would be. The other is a bit too big (it poofs out from my scalp a bit in the back). So back they'll go, and replacements are on their way here. I had originally thought to go to a wig shop to buy one, since one of the tenants at work (that I hear from a lot) is a specialty cancer-oriented wig place. Turns out they're 10 times the price of the wigs in the catalog, plus they charge a fee just for a consultation visit. The oncology nurses were quite indignant about that. I'm just as happy with my $45 dollar wigs from the catalog.

I've been wearing scarves to work most days, except Friday, when I wore my new Gatorade baseball cap (thanks Shayne!) and today, when I didn't go to work (lips are super ouchy - that's a technical term). I've developed a few guidelines to scarf wearing, which I will now share with you:
(1) Slippery material is a bad idea, as the scarf slides about and constant readjustment really makes your hair mat underneath.
(2) Large scarves are not necessarily better, as they get caught between your back and the chair, dislodging every time you move your head.
(3) Cotton scarves are better because they breathe, and keep your head warm when it's bloody cold out.
(4) (not really a scarf tip) Don't wear white turtlenecks when you're losing your dark hair, as coworkers will feel the need to pick random hairs off your shirt, and since that process is pretty endless, you'll both wind up embarrassed.

So my lips are chapped, and painful. My tongue feels less swollen than yesterday, which is good, but my tonsils still feel like I might choke on them and I still have the whole "dry mouth" thing happening. Not very fun. I'm on medicine that's meant for people with cold sores, as it seemed to help during the December side effects. Or that might just have been the whole "time heals all" thing since I didn't get the meds until the end of the second side effect week. So far, I've managed to avoid the whole windburned face effect by slathering on the moisturizer. And I've no appetite, but I wanted to lose weight anyhow. :)

I'm determined that I'll return to work tomorrow. I spent all last week catching up on stuff from December (since I missed 2.5 weeks due to side effects and 1.5 weeks due to holidays), and I don't want to let it get behind again (although I prepared for that on Friday, just in case). Folks repeatedly told me that they missed me when I was out. Aww. It was worth it to take the vacation time, to see everyone and de-stress.

In other news, Jason took Penny the Chemo Kitty to the vet for the next round of rabies/etc. shots, and now the vet thinks she's not pregnant. Says she doesn't feel swollen anymore, but is getting too fat (she put on a pound in the last month, and that's a lot on an 8lb. cat). Apparently cats can randomly decide not to be pregnant if the conditions aren't good for kittens in the first couple of weeks of pregnancy. They reabsorb the not-yet-kittens into their bodies. Weird, huh? This may have been what happened with her, or she could simply have been fixed by a really good surgeon who didn't leave big scars. Anyhow, I'm giving Penny until the end of the month to ante up with the kittens before the free-for-all feeding frenzy is over. Then we'll get her some of that cat food meant for indoor couch potato cats.

Speaking of which, she's currently beside me on the couch as I type this. She's all tired out from attacking the catnip snake my Mom got her for Xmas. She loves it so much she ripped its eyes off. Literally. Now that's love! I'm using the new laptop Jason bought (documentary expense). There's a draft from the window next to my desktop, and besides, this way I can pet Penny when pages are slow in loading or when I'm searching for weblog inspiration.

No dogsleds were harmed in the making of this holiday

Well, the new year is here. In spite of my new shorter hairdo, my hair loss is way noticable now. I'm "a little thin on top" and anyone suggesting that stupid foam hair from the infomercials is likely to get some of their hair ripped out. :) We're heading home to Boston tomorrow, after a wonderful visit to the Great White North (no, not the band).

I had a great time up at Kristen's cottage (near Huntsville) for New Year's Eve - very restful just to sit around and watch the fire channel (okay that's from last year) and do nothing but eat and read and nap and play board and card games. And laugh at those willing to play Twister. Oh, and set off a large number of fireworks over the lake. But hey, it's new years. It wouldn't be normal if there wasn't a chance of the guys setting themselves on fire while the gals looked on. I'll put up a link to the pictures from the cottage some time in the next week, once we get back home.

I've stocked up on all my bandanas, hats and scarves from the high school and U of Waterloo years, which were still in my closet at the parents' (see! You should never ever throw anything out!). Now all I have to do is figure out which one to wear to work on Monday. They're all kinda casual. I guess I'll go for that Kim Mitchell look: nothing on top, longish hair, baseball cap. Might as well go for a soda. Or maybe the Bret Michaels bandana look. The hair probably won't come back until after I'm done all the chemo in May.

My next round of chemo treatments start Monday, after work. Five days on, three weeks off. They are dropping my dose of Leucovorin, which, as I'm sure you all remember from my previous posts, is just a vitamin that acts as an enhancer to the appropriately named 5-FU (the main chemo drug I get). It also enhances the side effects, so by dropping it they hope to keep me a happy camper instead of the creature from beyond. Don't ask beyond what.

I'm going to make Jason takes me out for dinner Monday. The condemned ate a hearty meal, or something. Since I'll be slightly nauseous for the rest of the week, I think I deserve it. And at some point we'll need to get some groceries, I guess, since the pantry is bare. Well, okay, not really, but we're out of important things. Like ice cream. :) No word on kittens from Penny yet, but she's got to the end of January to produce before we decide she's somehow avoided becoming a Mom, in spite of being outdoors and unspayed for two months.

Happy Holiday-of-Your-Choice!

So we're now in Toronto, visiting the 'rents, and I'm still losing my hair in fits and starts (and still finding it yuckily in my food). The pink eye seems to have been defeated by the antibiotic goop, and my lips have healed. Some foods still taste odd, though. And not just fruitcake!

Any wig will have to wait until I'm back in Boston in January, because for insurance to cover it, the doctor needs to write a prescription for a "scalp prosthesis". The American healthcare system (or lack thereof) is so weird.

I feel bad that I've been off work since the beginning of December, but the office seems to have survived (and I was able to fix the problem the fax machine was having over the phone!). I didn't go back to work earlier this week, because of the pink eye - it's so darn contagious.

My next round of chemo begins the first week in January. It'll be a lower dosage, because of the side effects I've had (which are unusually severe, but then again, what about this whole business has been "usual"?). If my side effects are as dramatic with the lower dose, I may ask my boss if I can take an extended leave of absence until the chemo is over.

The holidays so far have been great fun. I'm still sleeping a bit more than usual, but what the hell, I'm on vacation! We're still planning on heading to the middle of nowhere (Muskoka) for New Years, which I'm sure will be relaxing as usual. I'm avoiding the shopping malls during the Boxing Day Sales, because of the crowds and my "compromised" immune system. Compromised seems so shady, you know? Like I've done something vaguely obscene that has rendered me susceptable to illness.

Well, it's nearly midnight, and I should get some sleep. I just wanted to wish everyone happy holidays, and to warn you all that in lieu of Christmas cards, which just didn't happen this year, I'll be sending random "happy winter" or "happy February" cards. ;)

Hair Today, Gone Tomorrow

Today was both a good and not so good day. Good news: mouth finally healing, don't look like I'm virulent anymore. My eye doesn't hurt anymore, except for a faint itching. Bad news: I noticed last week that I seemed to be shedding more in the shower than usual. Today it was big honking locks of hair. So far I don't think there are any noticable bald bits, but it's still not very encouraging.

So I email the oncology department's social worker. She made a big point of indicating her email on her card. But no comment from her. According to my now numerous sources, there really isn't anything to be done to prevent hair loss. It'll grow back, but maybe not the same colour. Or texture. Could be curly and blonde. Gah!

I've got a satin pillowcase to prevent it from rubbing off in my sleep (oh, isn't that a lovely mental picture?), and they also recommend getting my hair cut short, because bald spots would be less noticable (does this seem counterintuitive to anyone else?) and because the weight of long hair can cause it to pull out more easily (this at least makes sense). But I've always had long hair. Well, okay, there was that bad perm and pageboy haircut in grade nine, but... hey, it's grade nine, whaddaya want?

And I look like hell in hats. :P

They recommend going wig shopping before you lose it all. Wonderful. I'll schedule that in as soon as I get back from holidays. Of course, maybe I'll have lost it all by then. Chantal recommended shaving my head, and having my hair made into a wig if it was likely I'd lose it. Problem is, they only said that hair thinning was a possible side effect. Not that I'd wind up looking like Sinead O'Connor!

Alright, maybe not Sinead O'Connor. In fact, I'm not sure it's even noticable. Yet. Grr. This is not a fun experience whatsoever. Especially since the now downwardly mobile hair seems to be finding its way into my food! Ew! Hair in the popcorn! It's grrrreat! Except for that whole not at all great part.

Web Cancer

Jason's visiting his family, the cat's curled up behind my flatscreen monitor, and my eye and lips are on the mend, so I thought I'd spend some time today exploring the web in search of... well, I don't know what. Maybe a website with lots of cancer info that I haven't learned yet.

So, to start with, Scott Hamilton's (yes, the skater) great site about chemo, which was the first site to sit me down and explain what the 5FU and Leucovorin were doing inside me (besides, presumably, wiping out the cancer), and why it was pissing off the cells in my mouth in the meantime. Much more informative and easier to navigate than the American Cancer Society's page.

One of the message boards on the ChemoCare website mentioned SemiColon - a colon cancer Yahoo! group. So I signed up for that. What the heck, I get a ton of spam in my inbox currently. Some of it ought to be relevant. There was a link there to a Cafe Press store (I was already familiar with Cafe Press, but if you're not, check it out), where I bought a great mug that reads "I didn't survive cancer to die of stress!", and another that says "Colon Cancer Screening: a good thing to get behind you".

From there I found Cancer and Careers which is a much more serious website about trying to juggle cancer treatment and a job. Welcome to my life. Sheesh. Speaking of which, I hope to return to my desk and phones and stuff tomorrow.

That site mentioned Molly McMaster's Colossal Colon tour, and I vaguely remembered it had been in this area at some point this fall, right around the time they found my tumour. I went to her Rolling To Recovery website, and found out I'm not the only one dumbfounding doctors by not fitting the colon cancer demographic. Molly's also very good about responding to folks that sign her guest book. :)

In her links page, I found a link to Planet Cancer. It's a cancer site aimed at young adults. Their "Top 10 (+2) Responses to Enduring a Colonoscopy" is just too damn funny! This is my kind of cancer site! They also have a Cafe Press store that made me laugh, created by Steve, a very funny Bostonite. Ordered that mug too.

I hope the web links in this posting work. If not, give me a day or two to swear at it and see if I can badger Jason into making it work.

See No Evil

So now that my lips are almost healed and I've reached the point where I can venture into public without fear that people will run screaming, I woke up this morning with my left eye swollen and crusty. Went to the ER and after a few hours (if you're not dying they figure you've got all the time in the world) they determined that I have conjunctivitis. Otherwise known as PINK EYE.

This is so not fun. Can't wear my contacts for a week. Everyone who's seen me in my glasses raise their hand. I just hate wearing them. But, it's that or no vision at all.

So the ER doctor gave me some antibiotic goo to squish into my eyeball 3 times day tat will supposedly make it heal faster. And let me tell you, if your eye already feels itchy and nasty, the last thing you want to do is put something with the consistancy of vaseline into it.

This was just the thing I needed when Monday was going to be my first day back at work after two weeks of mooching about the house, trying not to move my lips. And my Xmas vacation is due to start Wednesday. I'll call my boss tomorrow maybe and ask what she thinks. Right now, my left eye is swollen enough that it looks like Jason took a poke at me!

For the record, I probably contracted it from someone Jason was in contact with, or from someone at the drug store, or who touched our mail or something, not from the cat. Cats do not cause pink eye. Jeez.

Pills, glorious pills!

The doctor prescribed some pills usually used for people with cold sores, and I don't know if it is a result of them, or just time, but my upper lip is now completely healed and my lower lip looks less... well, crusty. Ew. It just looks like I stuck it to something metal outside. :P And it's healing (YAY!).

Looks like I might actually be able to go back to work in the foreseeable future. Just in time to take off for my Christmas holiday! Oops.

Today was the first day in a week I was actually able to open my mouth wide enough to thoroughly brush my teeth. Let me tell you, it felt glorious. It's bizarre how the little things make life better.

The Xmas gifts I ordered online have been arriving. It's such fun to get stuff in the mail, even when they're not, technically, for me. I'm not sure how I'll get it all to Toronto, but I'm sure I'll work something out.

I bought some books for myself (using the gift certificate Jason got me for my birthday). I tried to find something along the lines of "What to expect when your cat is expecting", but no such luck. Books about holistic pet care, books about how to adopt a cat, books about caring for aging cats, but nothing about pregnant cats. So I bought a couple of general cat books. The Humane Society book is good, but has nothing about pregnant cats. Lots of info about having your cat fixed though. Go figure.

They also had elaborate instructions on how to make an outdoor cat into an indoor cat. Huh. We just brought her indoors. There. Done. She's shown no interest in returning to the wide wide world (especially since it snowed), although she does want to explore the rest of the house (we're keeping her on the first floor only - I have no desire to wake up with a cat on my head).

Kvetching about Chemo

Thank goodness for Penny the Chemo Kitty. She's been keeping me company for the past week as I wait impatiently for my lips to heal up. I'll spare you the really gory details, but suffice it to say that talking is painful, cracking a smile actually involves cracking and eating and drinking are nightmares.

The nice thing with Penny, is she never complains if I want to watch endless episodes of Good Eats (we've seen the jam making episode 3 times now) or listen to non-stop Christmas music. She doesn't demand conversation, although she does make me smile involuntarily now and again (ow!).

Not that Jason hasn't been fabulous through all of this: going out in the snow on repeated occasions to bring me ice cream, vaseline lip goop, pudding, kleenex and various other necessities. But I like to talk to him, and that's a bad thing right now.

Frankly, I'm pretty damned frustrated by the current state of affairs. It's all well and good for the nurse to tell me to drink lots of fluids, but it's a bitch when bits of your lip stick to the edge of the glassware. Ooops. I was going to leave out the gory bits, wasn't I? Sorry.

So the first week of December was my treatment week. I left work early every day to go to the hospital for my shot. Aside from some mild nausea and being tired out from the driving, I was fine.

The second week started out not-so-fine. I was miserable with a sore throat, sore face, and sore mouth, so I didn't go in to work. The majority of the symptoms passed fairly quickly from Hell to something I'll survive. Except for my lips. They don't seem to be improving. I can't go back to work while they're like this.

For one thing, they look like they were transplanted from some sort of monster. For another, they feel like it. I wish I could get a lip transplant. I can't imagine they'll heal very quickly when I keep cracking them by eating, drinking, talking, etc.

So this is the beginning of the third week, and today is the 6th day of work I've missed. The shoddy thing about this is that what with all the snow we had last weekend, followed with freezing rain/sleet/misery last night, I know it's a stressful time at the office, and we're already short-handed.

When the doctors told me that the top three side effects of my particular chemo drugs were nausea, diarrhea and mouth sores, I thought, well, I can deal with that. As a veteran car-sicker, nausea and I are old buddies. Diarrhea, well, that's what Imodium's for, right? And mouth sores? I can deal with a few canker sores, after all, I wore braces for two-plus years, and it didn't kill me. At least, not so you'd notice.

I don't think I understood the scope. Either that or this is not a normal reaction. I'm thinking (hoping) the latter. I called the nurse on Friday and she suggested slathering my lips with vaseline. I don't know if I'm over-reacting, or if she just isn't understanding how evil this is. I'm gearing myself up to go to the hospital so that they can see for themselves how wretched I look (and by extension, feel), but I'm nervous that I'll scare any children I pass in the hallway! Maybe I'll wear one of those dust masks.

Speaking of which, I can't imagine Air Canada will be thrilled to have me aboard when I look like this - I could be carrying something worse than SARS by the looks of things! Fortunately, my family has announced that if I'm not up to coming there, they'll come here. But it's a pain in the butt. Seriously. And I'd be VERY bitter to miss out on New Year's at Kristen's cottage. It's the only time I really get to hang out with some of the RTS gang, and plus, it's a lot of fun.

Okay, I feel much better for kvetching.

Life in Hell

Okay, so yesterday I was officially in Hell. Try to imagine tonsilitis combined with new braces and the worst windburn you ever had and you'll be close to how I felt.

The chemo side effects started Saturday, when I noticed I looked kind of flushed and my face felt kind of burned. By Sunday, my face was really chapped. By Monday, my face felt like it would crack whenever I moved the skin. My poor lips! I have chapsticks scattered throughout the house.

Sunday I also developed a bunch of canker sores in my mouth, particularly on the inside of my lips. Did I mention my poor lips?

Oh, and I have no appetite. Not that trying to eat when your mouth and throat are so unhappy would be fun. Although I have been meaning to go on a diet. If I start craving broccoli, then I'll worry. The only good thing was that last week's extremely mild nausea (I've had worse from rides in friend's cars) disappeared.

The mild headcold of last week decided to move into my throat with a vengance, and if my tongue hadn't been so swollen and my lips hadn't cracked at the mere thought, I would have taken a knife and removed my tonsils myself.

Top it off with trying to dig my car out when I was on my way to an appointment with the oncologist about these symptoms (the plows had blocked us back in after Jason dug out Sunday night... in case you hadn't heard, Boston got between 2 and 3 feet of snow this weekend), and having a piece of the bottom of my car (the splashguard) rip off in the drift. Not a good day.

Fortunately, things are a bit better today. Swallowing isn't quite the nightmare it was yesterday, a bit of the snow has melted and VW was able to fix my car yesterday afternoon for around $100. By applying vitamin E cream and aloe vera gel with extreme prejudice, my windburn has died down to where I just look flushed. Although my lips are still miserable, I can deal with it.

The oncologist was all ready to change my chemo regimen to one where I went once a week, every week, with the theory that 5 treatments in a row were what did me in, but I think I'll try to hold out against that. With this current regimen at least I'll have (I hope) two weeks of reasonable health, to balance the week of treatment & nausea and this week of Hell... I mean side effects.

Is it nap time yet?

Well, 3 chemo treatments down, 27 to go (5 a month, for 6 months). I was a bit nauseous yesterday, probably because I waited until noon to try to eat lunch, instead of having something at 10:30 when I got hungry. And I'm very tired, which could be chemo or could be the ongoing saga of recovery from the surgery.

I brought some soda crackers to work to munch on in case it happens again, but as instructed by the chemo nurses, I took anti-nausea drugs first thing this morning. They're not supposed to make you sleepy, but I really feel like I could stand to curl up for a bit more shut-eye, in spite of the fact that I was in bed at 7pm last night (the last of the party animals, that's me!).

I think the driving to and from the hospital daily is also kind of draining. It's probably 20 minutes from my office to the hospital, and then half an hour to 45 minutes to home (there's sneaky routes from the office to the hospital, but I haven't found one to home - plus it's during rush hour, right at 5pm).

Two more days of this and then back to normal again. Except that the side effects are supposed to start hitting then. I can hardly wait. Thank goodness for online shopping, or I dunno how I'd get ready for Xmas.

Look ma, no nausea!

Had my first dose of chemotherapy today. Fast, non-traumatic, and so far, no side effects. Granted, the first drug they gave me (a pill) was an anti-nausea drug, but still. I was able to drive myself home.

Instead of rigging me to an IV bag, the nurse just stood there and injected me with the chemical. Took all of five minutes, maybe. Longest portion was her trying to find a vein. I didn't even get to open either of the books I brought. It's two and a half hours later and I'm still feeling fine.

And, for those of you who have asked, Penny the cat is doing fine too. :)

Hope you like the new look of the website. I'll continue to fiddle with it.

Gimme the drugs, man!

The oncologist had the reaction I'm beginning to expect from all medical professionals: totally surprised that I had no family history or any personal medical issues which would have lead to colon cancer. He thinks chemo would be a good idea for me. Chemotherapy is therapy with chemicals, as opposed to radiation therapy which is where they make you glow in the dark (kidding!).

So my tumour had advanced to what he called Stage C. Stage A is when it's snugged up against the interior lining of the colon (easy to remove, not very big). Stage B1 is when it's grown out into the middle of the actual colon and is starting to obstruct shit. Literally. Ew. Stage B2 is when it starts to breach the muscle wall surrounding the colon, and Stage C is when it reaches its slimy little tentacles out and starts playing footsie with the lymph nodes which surround the colon. The lymph nodes are there to fight bacteria which often enter the body through food. Would you like fries with that? Stage D is where it's metastisized and is busy mamboing throughout your organs.

I'm at stage C, but just barely, since it only managed to snare one of the twenty one lymph nodes. That's good. And because my tumour was in the right or ascending colon, I have a lot less chance of recurrance than, say, a tumour found in the descending colon. Also good. Unfortunately, I still wind up with a 25-40% chance of the cancer coming back. Sucko.

However, through the marvels of modern medicine, I can hedge my bets using chemical warfare! Whoopie! Lowers my risk of recurrance to 11-28%. Radiation therapy doesn't really do diddly squat for colorectal cancer, possibly because your colon is like an internal slinky. No, it doesn't go down stairs, alone or in pairs, or make a slinkity sound, but it does move around a lot, so that it's hard to precisely aim the radiation.

Plus, he's going to send me to a genetic counsellor. I can see it now, he looks at my genotype, looks at Jason's, shakes his head and says, "You two better not breed. The results would be catastrophic!" Okay, maybe not. But the genetic counsellor can identify whether I've got some strange mutation that might pass on to kids or something. Since there is no family history of this sort of thing (all my close relatives are signing up for colonoscopies), and I am so young, they really are confused as to how I got it. My Dad is convinced it's something I ate.

So, back to the chemical warfare: A combination of fluorouracil (street name: 5-FU) and leucovorin (a water soluble vitamin in the folate group that amplifies the effects of 5-FU) is the standard treatment. The three most common side effects of this treatment are: mild nausea, diarrhea and mouth sores (like canker sores). The other treatments sometimes used have much harsher side effects. They'll probably give me something to counteract the nausea (since it's the most likely side effect for someone who gets car sick after a two minute ride in a stick shift).

The schedule for the drugs is daily 20 minute treatments, Monday to Friday for one week, and then 3 weeks off. For the treatments, they sit me in a lazy boy in front of a TV, hook me to an IV and press GO (they showed me the lazyboys - the ones for people who need treatments lasting more than an hour have VCRs!). The week of the treatments I'll be nauseous; the week following, I'll lack energy; the final two weeks I should feel fairly normal. 6 months of this schedule, followed by regular Carcinoembryonic antigen (CEA) blood tests and the occasional colonoscopy to watch for a recurrance should see me free and clear. I can work all the way through, except for the 20 minutes I'm at the hospital on treatment days.

My first round starts December 1. Due to the holidays, my second round won't be until the first Monday in January. :) Little hard to visit the hospital from Toronto... or the cottage!

Pathology Report

The pathologists have finished oohing and aahing over my tumor and have once again confirmed everyone else's opinion: it's really weird for someone not quite 30 to have a colon tumor. No shit sherlock. And you went to med school for this?

Apparently it hasn't metastasized (spread to other organs), which is, of course VERY GOOD. There were cancer cells found in one lymph node (out of 21 in the tissue the doctor removed), which isn't perfect, but isn't so sucky either (more than two is officially considered sucky). Basically, it's not likely to have spread into the rest of the lymphatic system.

Because it hit me so young, however, the surgeon wants me to get some chemo. I go to see the chemo doctor (oncologist) on the 19th (it won't start until I'm completely recovered from the surgery). Side effects and duration depend on what drugs the oncologist decides to use. Probably just lack of energy and nausea. Goody. Just what someone who gets car sick anyway needs to hear! It won't be particularly heavy chemo (much less severe than breast cancer patients get, for example), so I will probably be able to work during it. That will all be determined later.

Anatomy Lesson

Okay, because some folks have asked, here's the scoop on the colon. Until this, I always thought a colon was the eyes on the smiley :) but apparently it's just another name for the large intestine. The small intestine does most of the digestive work, and hooks up to the large intestine on your lower right side, above the hip (this is also where the appendix is). The large intestine runs up your right side (the ascending colon), across to the left side (the transverse colon), down your left side (the descending colon) and through a funny S shape (the sigmoid colon) to hook up to the rectum. I think you can guess what happens from that point on. The whole large intestine, if for some reason you wanted to stretch it out, is about 5-6 feet long, and most of what it absorbs from food is water, so having a chunk cut out of it isn't a big deal as far as digestion goes.

My tumor was the size of a tennis ball located in the ascending colon. No wonder the gastro specialist was surprised I was able to digest solid food! The surgeon made a 7" incision, angling from near my belly button up and to the right, moved aside (not cut!) the muscles, and cut the tumor and a good hunk of the surrounding colon out and reattached the remainder to the small intestine (this is called resection). Included in the tissue removed were 21 lymph nodes (there are lots left). He sealed it all with 18 surgical staples (removed a week later). The tumor went to the pathologists for disection.

A few days later and I was back on solid food. No colostomy bag was involved whatsoever (ew ew ew ew ew). By Saturday, I was at home. Belly laughs, coughing and sneezing were painful. Getting out of bed was a nightmare that I minimized by actually sliding to the floor, and ending in a crouch, otherwise I'd be in such pain that I'd have to go lie down. I was on pain killers, but within a few days was just taking Extra Strength Tylenol.

My doctor insisted on a month off work, with me taking naps whenever I felt tired (which was pretty damn often, so the month off work wasn't as much fun as it could have been).

I am not part of the population that would normally be considered at risk for colon cancer (over 50 and a family history are the qualifications). Thank goodness I had those dumb stomach pains, because colon cancer can take up to 10 years to develop with no warning until your stomach starts hurting. It has been recommended that my family have colonoscopies ASAP.

Here's a hint: if you're having abdominal pains and it's not the right time of the month for menstral pains (or you're a guy), you should go see your doctor. And if the doctor says "it's probably ovarian cysts" or "it's probably IBS" (irritated bowel syndrome) or "it's probably something you ate", keep pushing until he/she/they can tell you EXACTLY what it is. Especially if they say it's ovarian cysts, and you're a guy. That's just weird. Colonoscopies are pricey so insurance companies like to discourage doctors from recommending them (even when the insurance company is the government), but they're the best way of determining what's going on in there. As my boss told me: It's your health, be pushy.

Since some of you have seemed confused, here's a happy little diagram:

Colon? I don't want no stinkin' colon!

The gastro-intestinal specialist was very nice and said the only way to resolve the mystery would be a colonoscopy. It was scheduled for three weeks later on October 9th. The procedure was remarkably easy... mostly due to the drugs they gave me. It was like being drunk. You'd swear you were lucid at any given moment, but two seconds later you'd have forgotten what you said. Anyhow, about 10 minutes into the procedure the doctor annouced he'd found a mass and was getting the hell out of my colon. Or something like that. Remember the drugs?

Anyway, the wheeled me somewhere to let the high wear off and when my husband arrived to ferry me home, the doctor sat us down and explained.

It was probably cancer. It would need to be removed. Did I know a surgeon? I named the one who had stood me up (he was still a really nice guy, I figured it was his office staff that sucked rocks), and the specialist said that he was a good doctor. I might need chemo following the surgery, and maybe radiation therapy. It didn't seem to have gone through the intestinal wall. It hadn't metastasized or gone nodal. I didn't have any clue what those meant, but figured it was good. He said I probably wouldn't need a colostomy bag. Until he brought it up, neither Jason nor I had considered it.

The doctor said he'd have recommended a liquid diet, except that I seemed to be digesting just fine. He had done a biopsy and the results would go to my regular doctor's office.

He had already spoken to her and I should call her tomorrow. For the first of many times I was told how unusual it was for someone my age with no family history of colon cancer to have a tumor. I was still goofy from the drugs and just happy to be able to leave the hospital, but Jason was really blown over by all this.

Still, when the drugs wore off, I was buoyed up by the fact that he'd said it was "probably" cancer. Since I'd been told the stomach pains were "probably" ovarian cysts, "probably" appendicitis and "probably" diverticulitis, I was not prepared to accept the diagnoses without proof.

When I finally tracked down my regular doctor the following day (she wasn't in the office and her receptionist was at first unwilling to find her for me), she acted like it was definate until I asked her about the biopsy results. She knew nothing about them and claimed the gastro specialist had told her it was definately cancer. Wonderful. At any rate, I'd be able to see the surgeon on October 14th at his normal office.

The surgeon said regardless of whether it was cancer, it was large enough that digestion would soon be an issue, so it had to come out. I was scheduled to go under the knife a week later on October 21st.

On the 16th, after many messages left with her office, my doctor got back to me to say that yes, it was indeed cancer. She was very sorry. And completely useless. Time to start looking for a new primary care physician, I think.

The medical profession fumbles.

A month later and feeling remarkably better, I scheduled an followup appointment for August 21st with the surgeon who had seen me in the emergency room and had them book me for a followup scan to be done the week before (August 11th). The buggy hospital had closed in the interim, so it was the shiny newer hospital that I went to for the scan. The disgusting prep drink had metamorphisized into two cans of a revolting "Berry Smoothie" flavoured substance that I hope never to need to choke down again. The unadulterated chemical had been been bad enough, flavouring and texturizing it made it nauseating.

The scan techs were remarkably closemouthed at the end of my scan, which made me nervous. My doctor's office called the next day to announce that the inflammation was not completely gone (DAMN), and that I should see a gastro-intestinal specialist about having a colonoscopy. They made an appointment for September 17th (the specialist wanted to give the inflammation a chance to completely disappear). Unfortunately, the nice voice on the phone informed me, my original CT scan films had gone missing. They were no longer at the shiny hospital and may have been returned to the hospital where they were done. The buggy and now closed hospital.

I spent a day or so tracking down the scan films. Thanks to an extremely kind and competent person who was still packing up the files at the closed hospital, the films were found in a basket where they were apparently dropped off after the hospital had officially closed. Jason was able to retrieve them and they were carefully stored in my living room pending my appointment with the surgeon. Finally things were going well.

Or not. When I presented myself at the surgeon's part-time office (he held hours at my doctor's office one day a week) on the 21st, the surgeon had failed to come back from his vacation. The receptionist was very sorry. Gee. How nice. He had probably informed his main office, and they hadn't passed the news on to her until about five minutes ago. Did I want to speak to the doctor instead? Hell yeah! The doctor (this was the first time I'd met her, as her nurse practitioner was the one I'd seen for my annual checkups) was nice and arranged for me to meet with a radiologist at the hospital to compare my CT scans the following day.

He was also very nice, and his computer was exceptionally nice. He looked at both scans (the newer one on said computer, scrolling up and down inside my torso with a mouse!). He said that the inflammation had decreased in size and recommended that I have a colonoscopy done and not a third CT scan. His reasoning was that if the inflammation was still there I'd need a colonoscopy anyway. He was pleased I had already got an appointment with the gastro-intestinal specialist.

Hospitals are no fun.

The surgeon summoned by my physician's office turned out to be fantastic and reassuring. He had a look at my CT scan films and said there didn't appear to be any sign of my appendix in them. He surmised that it may have ruptured and then, instead of attempting to kill me, it had somehow sealed itself off into an abscess. Since I was otherwise healthy, not rolling about in pain, and mostly just hungry and tired, he felt that just giving me tons of antibiotics would help treat the abscess.

I was finally taken to a room and allowed to sleep by about 8 or 9pm. There were no private rooms available, so I had 2 elderly ladies as roommates. One had just had a hip replacement, and one had lung problems. I think there was a third roommate, but she spent most of the day in the hall in an easy chair, and never said boo.

Friday I got to have another scan of my insides, this time a lovely procedure called a barium enema. I don't recommend it even if you're feeling well. The pain meds were leaving me somewhat nauseated, the ab pains were still going on, and I had a tampon in during the procedure, and so it was absolute agony for me. At one point I announced that I thought I was going to be sick. They brought me one of those cute little kidney-bean shaped dishes that you use when you rinse and spit. That was optimistic of them. Fortunately, the procedure was finished quickly enough that I didn't actually bring anything up. Not that I'd had anything to eat since Wednesday lunch-ish.

The way the barium enema works is that they squirt barium the wrong way up your digestive track and give you an Xray. The Xray machine is hooked up to a TV so they can actually roll you and the machine around to get a better view. Their view told them that my appendix was alive and, believe it or not, well. The inflammation (which is what they began calling the abscess) seemed to be in my bowels. Probably, claimed the doctor who came to visit after the indignity was over and I was back in my shared room, a diverticulum, or pocket in the intestinal wall, that had become infected. This was a Friday, they would fill me full of antibiotics and if I was feeling better, I could go home maybe Monday.

My two roommates got sprung sooner than I did, and were replaced, although I bet the nurses wished it was me who was replaced. I kept having to hit the call button any time I needed to use the bathroom, since I was, yet again, tethered to the bed by the IV feeding me antibiotics. Why they didn't just put it on a wheeled stand and make life easier for all concerned, I'm not sure. I was pretty damn desperate to get home to my own private bedroom and all that by the time Monday rolled around, and since my pain had eased, I was sent off, with the instructions to finish my antibiotics that week and to get a followup CT scan and visit in about a month.

Annoyance and Abscesses

Although the pain was enough that it kept me from deep sleep, it was not causing me to shriek and flail about. So the check-in process was somewhat leisurely because I was obviously not in any danger. The doctor had a look at me, heard my symptoms, decided it was probably my appendix but that I should have a CAT or CT scan (it's known by both terms). Problem was, the CT scan techs don't come on duty until 9am. So I changed into one of the hospital gowns (johnnies, they call them), sent Jason home for an Agatha Christie novel to keep me occupied, called work to tell them I probably wouldn't be in and settled down to wait.

The wait was not a good thing. For one thing, it allowed me to notice that for a hospital, there seemed to be a lot of creepy crawlies about. I'm not talking barflies or druggies, I'm talking bugs. Flying bugs, crawling bugs. Not tons, but I saw about half a dozen. Makes you wonder what I didn't see. And they left me hooked to an IV, and didn't really check on me that often, which was minorly annoying (although I hate being disturbed when I'm reading).

Still, 8:30 came around, and at some point near then, the nursing shift changed. The new nurse came in and introduced herself and provided me with a large and unpleasant drink that was the prep for the CT scan. Apparently I had to have it 2 hours before the scan. Now some basic math will show you that I couldn't have my scan until... 10:30am at this point. And since I had been sitting on my duff in the hospital emergency area since roughly 3:30am, you can imagine that I was somewhat peeved not to have received the drink earlier. And since the drink was a laxative and I was tethered to the bed by an IV, you can imagine that I was getting somewhat cross. And since I hadn't had much sleep, you can imagine that I was somewhat... fretful (bitchy is the word that comes to mind).

After finally convincing a passing orderly to attach the IV bag to a wheeled stand, and using the facilities, I was ready just to take off, CT scan be damned. As I was dressing, the nurse finally returned and got a slightly incoherent blast of complaint. She assured me that I woud be seen by the CT techs as soon as they finished with their current person, and gave me some pain medication, and convinced me to get back into the stupid johnny.

Eventually I was wheeled in the stretcher (although I could easily have walked) to the hallway outside the CT scan room (the previous patient was apparently still inside), and left to rot. A nice nurse stopped by and asked me how I was doing (I later realized my stretcher was directly opposite her doorway) and got the CT scan tech to hurry the hell up.

The CT scan was just like it is on TV. Except that there was a pretty waterfall poster attached to the ceiling for you to stare at during the scan. Afterwards, they even let me get dressed in my normal clothes, but still refused to let me walk back to the emergency room area. The nice nurse reappeared, and we got to talking and discovered that her sister is one of my coworkers. She eventually wheeled my stretcher back to the emergency room, and the doctor on duty was convinced to come in and discuss the findings.

The doctor revealed that there was an abscess in my abdomen. Midway through this announcement, he was called to take a phone call, which he did to my annoyance. He came back to explain that the scan wasn't clear on what the abscess was attached to, but that it was a walled off bit of infection that would need to be drained or possibly surgically removed. He would call in a surgeon and a radiologist to talk to me. He bustled off. I called Jason to come to the hospital post haste.

I was wheeled to a much more open (and less likely to be ignored) part of the emergency room facilities and hooked up to some major antibiotics and Jason showed up. The nice nurse stopped by at one point, and I tearily told her the news (what? I'd had less than 2 hours of sleep and wanted my own damn bed, of course I was teary!). She quietly pointed out that the hospital was closing next week and I should definately not have the surgery there. She recommended a particular surgeon at another hospital (one that a lot of the staff and all the records were being transferred to). She implied that the staff remaining were not necessarily the ones I should trust my health to.

At this point (remember the bugginess of the place), I sent Jason off to the parking lot, to use his cell phone outside (it's a hospital, can't use them inside) to contact my doctor's office and find out if they could get me moved and scare up a decent surgeon. They could, they did, and although the emergency room doctor was somewhat offended at this slur on his recommendations, by 5pm my records and I were in an ambulance on my way to a different hospital.

In retrospect, I should have just unhooked the IV and had my husband drive me. Someone who gets motion sick in the best of times should not be forced to ride lying down, facing backwards, in a vehicle without enough shocks, during rush-hour, when she has abdominal pains. I wasn't sick, but I felt pretty green and shaky by the time we arrived at the other hospital. I was glad, at this point, that I didn't have to walk anywhere, only have my stretcher wheeled about. This emergency room was shiny and new looking and nary a bug to be seen. Joy!

Ow! That's my tummy!

Sometime around the July 4th long weekend, I started getting weird stomach pains. I thought maybe it was something I ate, and then decided it was menstral cramps, or maybe an allergy to some food or something. But it didn't go away. Originally it was just vaguely in the abdominal area, but it began to localize just above my right hip. On the 16th, I finally called the doctor's office and went there for a 4pm appointment with the nurse practitioner who has been doing my annual checkups for the last couple of years.

He had a look at me and listened to my symptoms. It could be ovarian cysts, he said, or maybe appendicitus. He decided it wasn't my appendix because the onset was too long (usually that pain escalates a lot faster). He did an internal exam and gave me a prescription for an anti-inflammatory and told me if the pain got worse to go to the emergency room.

I was unable to really fall into a deep sleep that night and about 3am I got up and told my husband that he'd better quit playing computer games and go to sleep as he would be driving me to the hospital in the morning. He said we should go immediately. Beat the rush.

So we did. I had vague recollections that the local hospital was going to be shut down in the nearish future, but the flyer my husband retrieved from the junk mail trash said it would still be open for "urgent care", whatever that is. So we went there.