Archive for the ‘cancer’ Category

clean scan

Friday morning I had my 2nd mammogram. My first was in May and at the time they saw some extra tissue in my right breast. Since I’d never had a mammogram before they wanted me to get another one in 6 months so they’d have a comparison.

I was nervous. To this point there’s been no sign of my cancer metastasizing, but how can one know for sure? I’ve met with a genetic counselor a few times, my birth parents have filled out a few questionnaires and so far my colon cancer appears to be a fluke. So now every time I have a test of any kind I get uneasy.

Got to the hospital a little late, but I was still the first scan of the morning. My nurse this time, Mimi, was much nicer than the one I got last time. She was quick and didn’t hurt me when she’d adjust my shoulder or press my face against the plexiglass. Yeah, it’s a weird little experience, I tell ya. You have to stand JUST SO or they have to do the scan again. And they really do press and pinch your boob pretty hard. Not pleasant.

Since I was the first scan (and that mini waiting room filled up fast, it did) my results came quickly. And what do you know, the extra tissue they found was just that, extra tissue. No cancer in my breast. Phew! I’ll be meeting with Dr. Jain next month and we’ll discuss when I should have another mammogram, whether I can wait a year or 6 months or 3 months or what. For now, I’m experiencing relief.

cycling and things you might put in your butt

Spent the weekend in Haverhill, which, of course, means I got to do a lot of bike riding. I don’t know how I’m going to handle it when it gets all cold and New England-y on me, I think I may need to get some better layering active-wear.

Saturday Todd did a ton of work around the house and was too tired to join me on a ride. He’s been riding on the weekdays and found a new 16 mile route. I mapped that out and added a few extra bits. When I got home from the ride I gmap-pedometered the ride and found I’d done 26 miles. This explained my fatigue, for sure. It was a beautiful route, down 110 into Merrimack and then returning mostly via the road along the river, which changes names about 4 times along the way. After riding by the water I moved back inland and passed a corn maze (ha ha, corn maize?) which I must try, a few farms and the most beautiful house I’ve ever seen. At one end of it is a renovated barn and there’s a round gazebo shaped room at the other end. In the middle is this tower of windows and most of it is painted this insanely gorgeous red. It’s on the market and I was guessing it would go for over a million bucks. Damn.

Sunday I did a slightly different and shorter (15 miles) route, but took many of the same roads. I stopped in front of the beautiful house and picked up a one-sheet description. I was right about the price: $1,150,000. What I didn’t realize, and couldn’t see from the street, was that it’s set on 4 acres, has its own marina big enough to accommodate a 60 foot yacht, an open floor plan, a whirlpool in one of the three bathrooms, a huge deck, 2 fireplaces and a built in bar, TV and sound system in the “great room.” Holy hell, can I pick ‘em or what? my new house

Monday was prep day for Tuesday’s colonoscopy. I had been on a “low residue” diet for a few days, which mostly means refined grains, refined sugars, no nuts or whole grains, etc,… essentially the opposite of what I usually eat. Of course, I supplemented this with an entire bag of Brach’s candy corn - my god, that stuff is effing addictive.

So anyway, on Monday I had to do a liquid diet. I was only allowed water, Gatorade, Sprite and Jell-O, but no red, pink or purple. So I made myself some orange because I’m not partial to lemon and I loathe lime. Whenever I buy gummy bears I go through and throw out all the lime ones before I dig in so there’s no way I can accidentally eat one, like at the movies in the dark.

Liquid diet sounds ok, right? I was hungry and tired, but otherwise fine. At 7PM I had to drink 1.5 bottles of this magnesium citrate, which is a liquid laxative. I was only allowed to get lemon-lime flavor. It was awful. It has some effervescence to it so it tasted like diet 7UP had gone to the dark side and had a sour and pinchy aftertaste that squeezed itself into the area between my cheek and my jaw. shudder….

But I must say, it wasn’t so bad. The laxative kicked in around 11PM and I hung out in the bathroom for a while, something that has become par for the course for me. And considering everything else I’ve been through, it just wasn’t a big deal. Friends had told me horror stories about their colonoscopy experiences, prep-wise, so I was prepared for the worst.

At 3AM or so I drank the other 1.5 bottles, sat in the bathroom a bit more, slept some, got up again, slept some, and got up at 7. My colonoscopy was at 9:30AM, so we left at 8:45 and made it on time. Only waited a few minutes when they called me back and I changed into the usual hospital gear: enormous pants w/string tie, jonny and robe. They took my vitals and asked me the battery of questions I’ve grown used to. The nurse gave me an IV in my hand, let me stop in the bathroom one more time, and had me lie down on the bed in a room.

Another nurse came in and chatted with me about the procedure and told me they’d have a camera at the end of the scope. I could watch the monitor they had in the corner and see the inside of my colon along with the doctor. She reminded me that they don’t put me completely under - what they do is called”waking anesthesia,” meaning it doesn’t completely knock you out. My one friend who had an ok experience with this procedure told me he’s pretty sure he was chatting with the doctor the whole time, but doesn’t remember it.

She had me lay on my side so they’d have easy access - uh, yeah - and then gave me two shots in my IV, a pain reliever and the anesthesia. It worked fast, too. I was already sleepy (no coffee and up all night) so I think I just went out. I don’t have any recollection of anything going up my butt, but I do remember seeing a little on the monitor and the doctor saying “Here’s where they sewed up your sigmoid colon” and me saying, “Oh, neat.” But that’s it. The next thing I was aware of was being wheeled into a recovery room where yet another nurse told me I had 30 more minutes and I could nap a bit if I liked. Yes, I liked.

Twenty minutes later or so I was awake and up and putting my clothes back on. Yes, I was a tad wobbly at this point, but I was fine. Todd and I went directly to Sound Bites so I could eat a nice big breakfast of pancakes, sausage and eggs and drink mucho coffee. All in all, not a terrible experience and if you know you need to get one done, I merely recommend you get a Monday appointment so you only have to miss one day of work. Otherwise, piece of cake.

end-o-chemo

A number of people have asked me if I’ll be celebrating the end of my treatments and if so, how? I joked with a few friends saying I’d commemorate the event with a new tattoo. I will be doing that soon and I’ve even (finally) decided where to put it. Now I merely need to hone the design. To really celebrate, though, requires travel. There’s something about going somewhere entirely new that marks an event, you know?

Somewhere new. I’ve never been to Montreal. Never been to Quebec, either and both were recommended. I’ve always wanted to visit Chicago as an adult… Thing is I only have 3-4 days to go anywhere and it’d be nice to have more time to explore a new city. We’d make the most of it and have a great time, sure, but I’d like to do something that focuses on my health.

Since we had so much fun Big Sur, CA, hiking sounded great and seemed to fit the bill. I did a bunch of research and got some advice and chose Acadia National Park in Maine. Acadia

Todd and I are driving up on Friday and I can’t wait. It sounds like Acadia has it all: lush, verdant trails on which to hike, ocean views, some rocky climbs and ample biking roads. Win win win. I found a cabin with a fireplace, a full kitchen and outside grill. It’s just up the street from Bar Harbor, so I can get in a little mercantile therapy if necessary. My birth mother, Debbie, suggested a great place for blueberry pancakes, so that’s definitely on the agenda.

Right now I can’t believe it’s over. The chemotherapy and cancer, that is. I can’t get my head around it. I feel like I still have to go back to the hospital on Monday and I don’t. That part is done. There is always more, though.

This month I have a PET Scan and colonoscopy and in November I have another mammogram. I will be meeting with Dr. Jain every three months and possibly undergoing a CT Scan with the same frequency. I’m not having the portocath removed until possibly January or February, so a nurse from Apria will need to come out and flush it monthly. Wonderful.

Cancer is something that can return, we’ve seen it time and time again. I will have to be vigilant and stay on top of my health. People ask me if this has changed my outlook on life, my attitude towards things in general and I’m really not sure. I don’t feel like I’ve changed much, at least not behavior-wise. I eat less meat and more fish (lately all I want is fish, all the time, except breakfast), but that’s it.

Perspective-wise I’m highly attuned to the word cancer in general. I notice every reference to it around me; in the papers, online, and in overheard conversations. I’m in the cancer club forever.

I guess I am more active now than ever and I feel an imperative to keep moving all the time. This is not some analogy for cancer chasing me and needing to keep ahead of it, I swear. I’ve always been a victim of inertia. Simply put, a body at rest stays at rest unless acted upon my outside forces. And a body in motion stays in motion. I feel better when I’m moving, so I have to keep it up, maintain momentum.

This is the only body I’ll get and I’d better take care of it. And appreciate it, even if sometimes in the mirror I do not like it at all. None of us are getting any younger, but if I can help slow time’s effect, I’ll do what I can. And I’ll have as much fun as possible with the effort.

ah, freedom

Wednesday at 10:30AM Joe, one of the nurses from Apria Healthcare, arrived at my office to unhook me. I’m always happy to be able to remove that drugbag and move with freedom and this time was no different with one exception. It was the last time. I’m finished with chemo.

I forgot to mention, when I got home from the hospital on Monday there was a little package waiting for me on my porch. Inside was an adorable and classy watch from my bff Melissa. On the tag she wrote “TIME TO STOP CHEMO.” How perfect is that? The watch has left my wrist only long enough for me to shower.

This is it, but mine has a black band.

red tango watch

So adorable. So thoughtful.

As usual I’d hoped to get some exercise that afternoon, but my fatigue got the best of me. That coupled with the upset stomach I seem to get once I’m off the bag, something about the cumulative effect of the drug, made any real workout or even a walk home out of the question.

I did stay up to watch this special on TLC (The Learning Channel, that is) called “Crazy Sexy Cancer.” I’m a TLC addict, so I knew about the program over a month ago. Despite letting out a “puh!-lease!” when I saw the ad I felt I had to check it out.

The show/film was a self produced documentary about a young woman who discovered she had tumors in her lungs and liver. There was no explanation for how she found out about the tumors, which bugged me. Maybe I came in a minute late and missed that part. She didn’t appear to be suffering from any pain.

Anyhow, her cancer is rare and incurable, but is simply biding its time. The doctor she settled on at Dana Farber told her the best they could do was wait to see if the cancer “made a move,” i.e. grew. She decided to search for her own cure. She documented her many travels and her cure, as far as I could figure, was to live life and not let cancer define her or stop her from doing the things she wanted to do. Cancer=Fear and that’s no way to live.

I agree with her 100%. But so far as I could see she’s not experienced much to do with actual cancer therapy beyond having a lot of CT Scans and interviewing other women who are going through a lot of chemotherapy. Because of that I found her to be a little less sympathetic a character, if you will, and less compelling.

It seemed that the dormant cancerous tumors in her body were a good excuse to try alternative therapies, diets and lifestyles. It became evident that some of the diet changes she made may have helped to keep the tumors from growing, so these efforts weren’t futile or even whimsical. She experienced the fear that comes with a cancer diagnosis, which is no small thing. And I can’t imagine how it must feel to have what amounts to a time bomb living inside you.

But she didn’t experience cancer the way I did. She didn’t endure overwhelming physical pain, surgery to remove a tumor, or chemotherapy, so I don’t fully relate to her. However she has an undeniably great attitude, one that I feel I share and admire.

Bringing it back to me. Thursday I went to my last spin class for 2 weeks or so since Jon will be on vacation and I am a spin class snob. I’d rather be outside anyway, so we’ll see how the weather treats us.

I was tired and the first hour class was incredibly difficult, but I’ve learned that it takes me some time to get warmed up. So I stayed for the 2nd class and it felt great. Exhausting, but fantastic. And as I rode I started really thinking about everything I’ve been through, now that it’s over, for all intents and purposes, and started feeling emotional.

When I disembarked the bike and turned to talk to my friend Deborah, she said how proud she was of me and wow, it’s over, right? She’s been through cancer herself, so this was especially poignant to me. I tried to stop myself, but I started crying. I couldn’t help it, I was so overwhelmed by it all; so amazed that I was here, that I was alive and working out. Not just working out, but working out hard in a class many find daunting, yet I’d only been unhooked the previous day. She said I amazed her and thinks it has to be my attitude. I want to believe that, I really do.

twelfth chemo - final treatment

This is it, my final treatment and this was a day fraught with annoyances.

Started the day by dropping Todd’s car at the dealer to get it serviced. Of course, they didn’t have a loaner vehicle for us, so we had to cab it to BIDMC. Cab took forever to get to us and I got incredibly frustrated. Calmed down by reminding myself it was not a big deal since they’ve never been strict about timeliness and ended up arriving at the hospital on time anyway.

I already knew Jackie wasn’t going to be there for my last day, so it was no surprise when another nurse set up my port and yet another gave me my infusions. What I wasn’t prepared for was the addition of another drug.

I was emailing a friend and believed my usual drugs were being infused when I suddenly felt very groggy and possibly slightly nauseous. Getting up at 5AM to drop off the car certainly explained why I was already exhausted, but this was different and sudden. My nurse came by so I asked if she had done anything differently. She said, “no, just the saline and the steroid. Oh, and a half bag of Benadryl.”

Oops! Evidently my chart still listed Benadryl, but I only needed Benadryl when they were giving me Oxaliplatin and that stopped 2 months ago. So the Benedryl was a freebie. HA. That stuff knocks me out in pill form, and in IV form it’s devastating. There went my plan to be productive, to read and write during my last infusion. Slept through most of the rest of my treatment and didn’t feel right again (relatively) until 8PM this evening, 10 hours later.

I bid a tearful goodbye to the nurses in the treatment center. It was a strange farewell because as sad as it was to leave knowing I may not see these people I’d come to know and adore again, I also knew that seeing them again on any regular basis would be bad news. It would mean I was sick again. The nurses probably deal with this kind of thing a lot and my guess is many of the goodbyes they engage in are far sadder. Mine was bittersweet. I do not envy them their saddest goodbyes; they are strong, caring, powerful and amazing women.

After leaving BIDMC we had to go back to the dealership to get Todd’s car. Public transportation back to Watertown is spidery (made more so with the construction going on at the Fenway stop) so we ended up at Cleveland Circle near where we used to live in Brighton and had a small lunch before taking another bus back over to Arsenal Street. Coming up with a plan to get there, though, was incredibly frustrating and I nearly lost it when the bus we’d been waiting for flew past us without a care. EFF!!

Getting back in the car was a huge relief. We got home and I needed to sleep more. Time for annoyance number, what? four? five? Somehow I hadn’t noticed until I laid down to nap that the nurse who set up my port used a slightly longer needle than usual. Jackie uses a 3/4″ needle and this one was at least an inch. I realize that doesn’t seem like much, but when it’s sticking out of my chest, it’s enormous. Oh well, nothing I can do about it now. It wasn’t such a hardship, though.

It just occurred to me I never put up any pictures of the port in use or my backpack, so here goes.

cimg4532.JPG

In this one you can see the rash my sensitive skin gets from the tape they use. Ick.

close up on port

Here’s two of me with the backpack.

bag from above

In this one you can see the tube that runs from my chest to the bag.

the bag 1

I slept well and could easily have let that nap become bedtime, but at 7 o’clock I felt compelled to get up and be awake until 10 or 11PM, leading to the final frustration of my day, inability to get to sleep when I needed to. Great. My one saving grace was the knowledge that after Wednesday I have no more chemotherapy to endure.

eleventh (penultimate) chemo

Arrived a little early for my 9AM appointment, but for some reason this time my treatment took a long time. They reintroduced Avastin to my chemo, but it should only have added about an hour to my infusion. Jackie, my nurse, and I were both a little baffled by this; we didn’t get out of there until past 3PM.

Todd had forgotten his laptop’s power supply so I let him use my laptop while were there. I spent my time catching up with some reading and writing, the kind you do on paper with a pen. Yes, I still do that. I love paper and pens, in fact I collect or hoard them depending on your perspective.

Anyway, for some reason we hadn’t really told Dr. Jain or any of the nurses about the band before and for some reason this time we did. Todd played them a bit of our music from the myspace.com site and they loved it. Having new listeners and people who dig us is always a good thing and it made my day. Made the fact that my treatment took so long easier to deal with.

Otherwise, though, the treatment was uneventful, which is a good thing.  The most remarkable thing about it was that it was my penultimate treatment.   I told Jackie that it felt like it went by quickly and she said her patients usually say the opposite.  It isn’t like I felt the chemo a piece of cake.  I think the treatments seemed to fly by for me because of the tidy two week segments my time has become.  If the treatments had affected me poorly, if I’d had awful side-effects throughout, if I’d lost my hair, I’m certain the time would have crawled by.  As it is, I say again, I’m lucky.

tenth chemo - my nurse is better than your nurse

I really sounded thrilled about my 9th chemo session going so quickly and efficiently, but after this 10th session I see that it had everything to do with making an earlier appointment and having my blood work done the previous Friday. My substitute nurse, Nicole, was indeed quite efficient, no question. She was subbing, though, and made no real effort to get to know me. Don’t get me wrong, she was polite and courteous, but slightly curt. Some people might have been offended, but Todd was there, so it’s not like I was alone and needed or wanted someone there to talk to me. I see this as Nicole being considerate to Jackie, not trying to hone in on her patient, as it were.

Which leads me to this week’s chemo, my 10th session. My nurse, Jackie, is the best. She’s been an oncology nurse for a long time, she knows so much, she has kids who are older than me, but she doesn’t look or act like it, and she not only lets me be the goofball that I am, but she seems to actually appreciate it. Either that or she’s a great actor, but it doesn’t matter because she puts me at ease and makes my treatments go smoothly. She and my clinical nurse, Sue (the one who let me know it was definitely unusual to want that “gross photograph”) are awesome.

For me it really is all about the people. That’s why I’ve had the same dang go-nowhere job I’ve had forEVer. It’s a good job and all: it pays fine and it has become not-so-painfully evident that my benefits are outstanding. But I’m not in any position to “move up” unless I go to law school and I’m not interested in becoming a lawyer. I chose to work where I do because I’m organized and learn quickly, and because what I really want to do is sing.  This job pays the bills. Certainly one could say it was naive to think my band, one of thousands of local bands, could make it big, so to speak, and I agree, but I still intend to sing. I’m considering session work, too.  Much as I love writing and playing original music, I’m at my happiest singing in general.

Hello, tangent! Back to my original thought.

The thing is, I’ve stayed where I am for so long because I love so many of the people I work with. They’re like family to me and they make me feel, for the most part, that I can be myself. I chose BIDMC’s cancer treatment center for some of the same reasons. The nurses are all wonderful and caring and mine in particular, is fabulous. How could I face the reality of these toxic drugs without them, without her?

I just read an article in Harper’s June issue (yes, I’m behind, I always am w/Harper’s) called “Chemo World: Surviving the cancer unit” by Sallie Tisdale.  She’s an oncology nurse at a treatment center at the Portland Medical Center in Oregon called 5-K. This treatment center is quite different from mine in that it sounds like most of the patients there are worse off than the ones I see. Maybe I’m being naive now; I only go once every two weeks and see many of the same people each time. They don’t seem so bad off, but who knows? Hell, I look and seem hale and hearty until I sit down in that chair, get pierced in my chest and then sit for a few hours while IV bags pump drugs into me. Who would guess?

Anyway, this story was especially poignant to me, as you can imagine. I found myself crying a few times as I read it last night before bed. She describes many patients’ personal experiences and writes about how little any of us know about cancer and chemo and its effects. Here’s an excerpt I found especially interesting and moving:

I asked Christa, who had lymphoma, what she remembered about being told she would need chemotherapy. “Oh, just the word ‘chemo’ - just the idea of chemo,” she said. “You’ve heard the most frightening things.”

Just that word, “chemo”: an insider’s word, diminutive, familiar. “Chemotherapy” actually means “any treatment with medicine,” but in modern parlance it means only one thing - the cytoxic drug. And what a word - the root, chem, has the same Greek source as the word “alchemy”: the search for a means of prolonging life, a universal cure for disease. The search for transmutation. My friend Sylvia, who survived Hodgkins disease, said of her chemotherapy, “It’s like going to a foreign country you’ve heard a lot of bad things about and never wanted to visit. And then you have to go there.” After Sylvia said that, I began to call it Chemo World.

Later in the article she writes:

Chemotherapy can be horrible and it can be a breeze, and it is usually something in between. The side effects I’ve listed here are horrible; I find them hard to read. Is the life that follows the reward for all this suffering? Or is the difficulty itself a gift? I know that people suffer here. They also survive. Their hair falls out and then it grows back. They throw up, they lose weight, they feel weak, they feel embarassed and then they get better. People get better. People get well. People go home.

As I read this memoir I did feel pangs of self-pity now that I’m a member of this getting-less-exclusive-by-the-day club. I also, again, felt lucky. None of my doctors know for sure that they got rid of all the cancer in my body. We may never know, which is why after all of this chemo I’ll still be getting checked every six months. I am lucky, though, for all the reasons I’ve written out so often. No doubt there are more reasons I’ve yet to uncover, but I’ll find them.

ninth chemo - maximum efficiency rocks

My nurse, Jackie, was on vacation this Monday so Nicole handled giving me my treatment. Why no one had told me the reason I sit around for almost an hour between arrival and treatment, I’ve no idea, but turns out it takes 30-40 minutes for the lab to process my blood work (they take blood everytime when I get there). They can’t order my drugs till that’s all done and then we wait for the bags of my drugs. WELL, finally I know what the holdup is.

This time my appointment was an hour earlier than usual, and since I’d had my blood drawn the previous Friday when I met with Dr. Jain, there was zero wait. I was told to head to the treatment room, sat down, and within a few minutes Nicole was accessing my port.

Can I just say how awesome Nicole is? I don’t mean to disparage Jackie, I love Jackie, but my goodness, Nicole was so damn efficient. Maximum efficiency rocks! She did things the way I think I would do them. It could be because she’s younger and/or hasn’t been doing this as long, but she was all about getting me out of there. For instance, she prepared my drugbag early, which is to say she placed the pump and the bag of 5FU in the backpack and got them all ready well before it was time to give me the 5FU syringe push. This meant that there was no time wasted after the 5FU push; I was ready to get up and go the minute she hooked me up to the bag.

I was home by 12:30 that day, which was crazy early and awesome. The weather was beauteous so Todd suggested we take a walk.  We were hungry and walked over to Sound Bites. We’ve ordered food from there approximately 783 times over the past four years, but hadn’t actually ever been inside. The awning and facade gave me the impression it would be run-down inside, but we were pleasantly surprised by the interior. Warm colors, lots of accent tiles and sunlight infused. And since it was before 3PM they were still serving brunch - things were going well! I got the eggs benedict (what else?) that came with some of the best home fries I’ve ever eaten. They were like a cross between home fries and mashed potatoes.

Boy, I’m really defying the cancer treatment predictions. Not only do I still have my hair and have rarely been nauseous, but I only stopped caring about food for a month or so. I s’pose after a lifetime of loving food like I do it’d be strange for that to continue. Food is one of my life’s joys; I’m certain that’s become evident in my entries here. On Monday I couldn’t stop referring to what a nice meal we’d had and saying how great it was that we have another great brunch place within walking distance - I’m so sick of Rosebud and their rude blue eyeshadow wearing waitresses and the way they hurry you in and out. The food isn’t anything special, either, it’s just fine, not great, not awful.

How did this entry change its focus so enormously? Well, that’s my brain for you.

eighth chemo - so it goes

For my eighth chemo session we arrived on time and things went smoothly. I spoke to Jackie about the painful stomachaches I’d been having as well as this weird bloated feeling. I’d also noticed a real bulge in my tummy and mentioned it. She brought my doctor back, I talked to him, and we set up an ultrasound for Tuesday. I didn’t want to miss work (”I can’t say I’m really MISSing it, Bob”), but I know, I know, I have to think of my health first. You’d think with the tumor and all this chemotherapy going on that I’d realize that right away, but it’s still surreal to me. This is my life now, this is my routine.

Isn’t it interesting how things become routine? You do something a few times on a certain schedule and before you know it, that’s your routine. Maybe you don’t even notice, maybe you only see in retrospect how things changed, how you changed. You don’t achieve the altitude you need to see the whole picture until afterwards.

That’s almost always the way it goes. Even when something enormously life-altering happens, like this cancer; like getting a new job; like having a baby, you roll with the punches and adjust.  You automatically shift gears and keep moving.  Otherwise you stall out.

When I sit still for too long and have time to really think about what’s happening in my life, I stall out. I sit in the middle of the road blocking traffic getting sad, depressed and self-involved. I get angry that this is happening to me. I get sullen and jealous of healthy people and all the things they can do without the same worries, without getting so tired and worn out. Sometimes it bothers me that I still look healthy because I’m not. Part of me wants everyone to know by looking at me that not all is well so they’ll treat me like I’m sick.

But then again, I don’t.

And the mirror fools me, too, and makes me think I can do things I can’t. It’s a conundrum, for sure. I might be having one of those days right now. Which means I need to get my butt to the gym.

Back to the treatment center - One of the many friendly nurses came back to chat a bit and made mention of the fact that Todd and I usually have our laptops out (he always does, I sometimes do). It came up that Todd got an iPhone. Faster than Steve Jobs says “we don’t talk about future products,” every nurse and volunteer was coming over asking to get up close and personal with the phone. Todd was suddenly Mr. Popular. Even other patients were curious to see it and find out if the hype panned out.

It does, by the way. That phone is soop-air cool. And with all the attention and interaction with people, my treatment went by nice and fast. I was home and napping by 3PM.

The next day I had that ultrasound and go figure, they didn’t find anything. My guess regarding the stomachaches (that my delicious homemade smoothies were too big) may have been correct. The bloating is still a mystery, probably just my old, fat belly returning to form.

As I said before, I’m taking my butt back to the gym.

the dark side

I’ve always had morbid curiosity. Always been interested in the dark side of things, with medical oddities and, well, death. This could have something to do with my love of Edward Gorey (since about the age of 5), but maybe it’s the other way ’round. And I understood the concept of death, realized we all die eventually, when I was four. I remember exactly where I was and what I was looking at when I had that epiphany.

This fascination of mine plays a significant roll in who I am, I think. Which could be considered odd. As my friend Sebastian put it best in an email to me recently (but before I started the blog):

“Yes, you always manage to see the bright side of everything, which is funny considering you were one of the first “gothy” people I ever befriended. Your demeanor was the antithesis of your appearance.”

These days I’m FAR from goth, yet I still maintain the fairly constant smile and outward appearance of loving life. Yet deep down (ok, maybe not that far down) I’m fascinated by the folly of humans, psychologically, and about the amazing human body. We know so little, really. My last visit with Melissa in Philly (who shares my fascination) was based around us going to Body Worlds (6 months before it came to Boston - there was no plan for it to come here yet…) and the time before that we, of course, went to the Mutter Museum. I own and love books with titles like The Grim Reaper’s Book of Days, Stiff: The Curious Lives of Cadavers and Final Exits: The Illustrated Encyclopedia of How We Die and am constantly seeking books of this nature.

One night in high school a friend and I were at a coffee shop and not sure what to do that evening. Out of nowhere she says, “Do you wanna see a dead body?!” Evidently a friend of hers worked the night shift at a morgue. We drove over and her friend let us see in the “freezer.”

Even as I sit here typing the memory of it makes my arms and chest go numb. I’d never seen a dead body in person and here were eight, four on each side of the room on slabs. The eeriest thing, besides the silence, was how much they appeared to be sleeping. There were probably a couple bodies with wounds that would’ve made it obvious they weren’t asleep, but I only got a good look at the one closest to me and the only clear indication of his not being alive was the pooling of the blood along his back.

I only got to look for a minute when my friend got freaked out and the girl who worked at the morgue realized she’d be fired if we were found out, so the door was shut and we were ushered quickly out.

Clearly I don’t have a weak stomach. So I wanted and got a copy of the pathology report on my tumor, but could get it only after mailing the hospital a request they asked be worded like so: “I, Ruth Peterson, hereby authorize the release of my medical records to myself.” No shit. Doesn’t that seem odd and redundant? Then I got the pathology report and had more laughs.

I’m sure most pathology reports aren’t construed as funny, but as I’ve mentioned if there’s funny to be found I’ll find it, dangit. In the report there are descriptions of the tumor and the infected areas. I’m going to copy some of what it says here. It can sound really nasty, so if you don’t want to know you should skip this paragraph.

“The bowel has been opened revealing in this area 8cm. of mucosal ulceration with shaggy green-black surface. [This made me laugh and go EEEEWWWWW!!] The wall is indurated [hardened]. The distal segment is 4 cm. and the mucosa appears pink, smooth and glistening over the mucosa on the opposite side…. Gross photographs are taken.” [I knew what they meant, of course, but you bet the photographs were gross!]

Again, I don’t have a weak stomach and am morbidly curious, therefore I set about trying to obtain these “gross photographs.” First I called my Sue, my Clinical Nurse at BIDMC. She’s a very nice, cool girl (I’m sure she’s a woman and it’s likely it’s un-PC of me to call her a girl, but I refer to myself as a girl, so….) who when I asked if other people sought their tumor photos she responded with a note lilting, “No!” that indicated it was a very bizarre request indeed. However, she did let me know I’d need to call Mt. Auburn to get it since they did the surgery.

I made a some phone calls and was passed around to various departments. People on the other line thought I meant I wanted slides. I said, no, I was referring to the photographs mentioned in my pathology report, I don’t need any slides. I finally reached the right department and it finally got through that what I wanted were my “gross” tumor photographs. The nurse I spoke with let me know she could only send this to another doctor and would need a letter worded similarly to the one I had to send to get my pathology report. The letter wasn’t a problem, but I couldn’t understand why they couldn’t just send it to me, I mean this tumor came out of my body. I grew the damn thing in my garden, they plucked it out and now I’m not allowed to see it?! No fair!

Sue kindly agreed to be the nominal recipient of this photograph and I faxed in my request letter. Someone from Mt. Auburn emailed me about ten minutes later to let me know the only photograph they had was digital - did I have an email for the doctor or would I prefer they just send it to me. Obviously I let them know they could just send it to me.

Stunning. All those phone calls, all that annoyance and supposed protocol and some kind person just emails me the high resolution gross photograph. This photo is of part of the section of colon they removed that contains part of the green-black tumor. I’m posting a link to it here.

If you have a weak stomach, don’t click the link. If you do not want to see this, don’t click the link. My guess (and hope) is that you know yourself well enough to know what you can handle and what you can’t. Take the red pill or take the blue pill? I leave it up to you.

CLICK THIS LINK AT YOUR OWN RISK!!

ah’IGHT?!

I’m SERIOUS!!

angry tumor

How was it? Are you disgusted? I expected to see a big, black-green misshapen ball, as though they’d removed it and then removed the section in which it had invaded. Evidently not. To me, this is all fascinating. I promised warts and all and with that in mind I posted the photo. I figure I can’t be the only person with this obsessive need to see it all.