Houston, we may have a problem...

SPOILER ALERT!! I'm about to tell you the end to this story before I even start. I think that in this particular case many of you will probably want to know how it ends before you actually get there. If not, skip this next sentence: I'm just fine. And now, on to this evening's tale of suspense and horror....

Last week I went to get my first ever mammogram. I had convinced my OB/Gyn to book one for me even though I am too young for the usual first screening by explaining to her that if I ever were going to get another cancer I would like to catch it in the earliest stage possible. Perhaps when that rogue cell was even *thinking* about dividing uncontrollably. ("Gee. I'm bored. And I'm sick of all these rules about the cell cycle. They can't tell *me* what to do! That's it, man! I'm going to divide uncontrollably! Where's my Braveheart face paint? Ready? AAAARRRRGGGGGGHHHHH!") So I went in, with Scout by my side, and had my boob smushed a-this-a-way and a-that-a-way while they took pretty x-ray pictures. Not so bad after all. Well, good. That's done.

Until two days later when I got message from my doc. "Hi Megan. Well, they found a shadow on your left breast. It's probably nothing - I'm not worried - probably just a fold in the skin during the x-ray - but I do want you to come back and get a diagnostic mammogram and an ultrasound." Okay. I'm going to try to be very calm about this. If she's not worried, I shouldn't be worried, right? Besides, breast cancer isn't one of the cancers that I have to worry about with my particular genetic syndrome, so it'll be okay. I mean, statistically, what are the chances of me having two unrelated cancers under the age of 35? Whatever it is, it has to have a 10^-100,000 after it, right?

So yesterday I go in for my second set of tests. On the way from the car to the hospital I feel like I might cry, vomit or shit my pants. Like, all at once. We get to the waiting room and I'm ushered into the 2nd waiting/dressing room. I change into my hospital gown and come out to see two ladies in identical gowns each sitting on separate couches. There is a third, vacant couch waiting for me. Suddenly I feel like I'm in "No Exit". Existentialist hell is waiting with two strangers to see if you have breast cancer. I decide that I'm going to be Inez, the lady to my left is Estelle and the brunette is Garcin.

After a long wait (they were having trouble printing my films from the previous week) I am taken into the x-ray room. They do more films, more angles. The tech tells me to wait in the waiting room. If these show the shadow, too, then they'll do an ultrasound. If not, then they'll assume it was a fluke in the x-ray and I can go home.

So I wait. And I shake. And I'm trying not to cry. I do the Buddhist trick of trying to observe my emotions. At least you take yourself one step out of the line of fire that way. The tech pokes her head through the door, "Megan? Come follow me."

Oh holy shit. The shadow is still there.

She says, "the radiologist is having a hard time reading your scans. Sometimes the shadow's there, but sometimes not, so we're going to have to do more angles? " Okay - not sure yet - I can handle this. So we take more x-rays and I wait in the x-ray room while she takes these new pics to the radiologist. Waiting and waiting and waiting. Trying not to vomit. No vomit, please.

She comes back. "You're fine! No shadows on these new ones at all!"

I high five the x-ray tech, peek outside the dressing room and mouth to Scout, "No cancer!" and then quickly change back into my clothes.

I have a student in half an hour so I beeline back to my office where I suddenly feel very dizzy, plop down in a chair and cry. Big, heaving, wet tears of relief.

Big world and little me

I'm not sure if it's my innate anthropologist or the smashing of preconceptions or the chance to eat unidentifiable foods but, damn, do I ever like to travel. I got back from Japan on Wednesday and the jetfog is just now receding enough for me to write a coherent blog entry. Japan did for me exactly what I had hoped -- got me out of my daily routine, rubbed and opened my metaphorical eyes and reminded me that I should not always believe everything I think. It's less a matter of finding new beliefs in whichever place I am visiting than remembering that other people don't think like me, or like Americans, or like Westerners, or with whichever group I've unconsciously been stepping in line. Oh right! Independence, free will, personal connection to the universal jim-jam! All good things.

I mostly stayed in Kyoto which was old and wise. The maple leaves were showing off their best plumage in red, orange and yellow. The shrines felt sacred and the teenagers felt like shopping. I shared a magnificent view of the city with hundreds of monkeys. I think they were over it, though. Seemed more interested in peanuts and screaming.

And I got to spend time with an old friend. Which very well may have been the best part.

If y'all want to see some photos of pretty colored leaves, along with other random items of interest, click here:

http://flickr.com/photos/mcaper/sets/72157603356547566/

Gombate!

I'm okay! And, I'm smart!

I just wanted to write a quick post to say that the colonoscopy went well. I had a few polyps that they removed, a touch of "patchy gastritis" and a bit of swelling around one of the staples from my surgery. Nothing that my GI was too worried about.

Yay!

Oh, and the GRE went really well. Apparently I'm a genius. Or so ETS says. (I never believe what ETS says.)


Sayonara!

I don't mean to start a ruckus, but...

I have my colonoscopy scheduled for Monday. Yesterday I was trying to remember the name of the stuff to buy for the prep so I could pick it up at the drugstore. I Googled "colonoscopy prep" and lots of helpful info came up. I found what I was looking for but I also found something else, mentioned on page after webpage that I feel I must address. Time after time I found the same piece of information being disseminated about colonoscopies and I have to say, I just don't agree.

Now, let me preface this by saying that I don't mean to be a troublemaker. "God save the queen", "if it doesn't fit you must acquit" and "mission accomplished" -- I agree 100% with all of that. I'm not looking to be an iconoclast nor do I want to cause any kind of upheaval in generally accepted groupthink, but I feel that I must correct what I see to be a major fallacy in the description of colonoscopies. I will also qualify this by saying that I have only ever has *one* colonoscopy, so it could be that I don't yet have enough experience with them to make this kind of blanket statement, but here goes anyway...

Almost all of the literature I have read about colonoscopies agrees on one fact -- the prep is the worst part of the procedure. Now, I will agree, the prep is *really* bad. You have to drink a chalky, vile liquid that induces what can only be likened to a bad case of food poisoning. But (and again I don't mean to start any kind of trouble here) I feel that the absolute worst part of colonoscopies is the part where they tell you that you have cancer. Now, before you dismiss my assertion out of hand, please finish listening to what I have to say. Firstly, the prep only lasts for one night and the treatment for the cancer lasts for about a year. Also, as a part of the treatment, you must do the prep *again* a few weeks later before the colectomy surgery. Secondly, within 24 hours after the prep, you look and feel the same as before: no scars, no hair loss, no pallid complexion. I *still* can't get that pesky 10 inch surgery scar to clear up. It's really annoying. And finally, while the prep is unpleasant, it can't kill you. You may feel like you want to die after spending 10 hours on the toilet, reading the same Sundance catalog for the 50th time, but you won't actually die. Cancer can, and indeed does, kill people.

So that's my stance. I am going to stick with it until someone can convince me otherwise. Since this is an interactive blog, I know some of you may feel compelled to write in and disagree. You are welcome to do so. This is America and, last time I checked, we are all allowed to have an opinion. But I stand firm -- the worst part of a colonoscopy is being told you have cancer.

Buzz Buzz Busy Bee. Buzz.

Just a post to say that I haven't posted in a while.

"We'll duh" you may say.

In the next 11 days I have to:

1. take the GRE

2. have my first annual yearly colonoscopy

3. go to Japan


My. Oh my.

I'll post lots about Japan when I get back.

But not about my colonoscopy. I'll leave that to your imagination.

Warning: This post contains references to intestines. Yes, intestines.

Many years ago I went to see Stanley Kubrick's film "Full Metal Jacket" (Yes, I was that much of a film geek, even at 15.) If you've never seen it, it may be one of the most graphic depictions of war ever put on film. Stuff you really don't want to see. Of the many ultra violent images, one has always stuck with me. I may be getting the details fuzzy (I haven't seen the movie since it came out) but there's a scene where one soldier gets his guts blown out. The horror is that he's still alive and he's scrambling to pick up his intestines and stuff them back in while his friends watch, unable to help.

That visual hit me hard. It showed up in my nightmares while I slept, my angsty teen poetry, my images of what I imagined my worst fate could be.

Today I realized why that image has such a profound hold on me. It's about control. Or really, it's about lack of control. The feeling of my slimy intestines in my hands, slipping through my fingers, and there's nothing I can do. As soon as I get a hold of one section, another I had been holding fast slips out of my hand. And another. And another. Nothing I do to try to get things back under control -- speed, planning, panic, calm -- nothing will stop the feeling of my slimy guts slipping out of my control.

And that's what cancer does. No matter how much I felt like I had my life in control, no matter how much I felt that I had built myself a safe place with friends and love and a home, it didn't matter. It all slipped through my fingers the instant I met cancer. Cancer blew my guts out, literally and figuratively.

Since I stopped chemo I've been on a quest. I feel compelled to get order back, logic back, get control of my life back. If I could feel in control, somehow it would make everything better. When everything is out of control, you try to control whatever you can.

So I made grand plans. I'm going to apply to grad school for next fall. Take the GRE, write essays, take prerequisites, fill out applications, go for interviews. I'm going to go to Japan next month. I'm going to write articles and a book. I'm going to invent a new card game. I'm going to be a pillar for the young girl I met who just lost her mom to cancer. I'm going to learn new things, buy new things, be new things. go go go go Go GO!

Enough. Rewind. Back the fuck up.

Stop.

I can't control my cancer. It may be gone and it may not. I may have 50 years left or only five. I don't know and, really, it doesn't matter. Whatever happens, it's not up to me. And no matter how much I scramble, how much I plan, how much I try to make it perfect, it's not. It's messy and loud and weird and unfair and the best thing ever and the worst thing ever. It's chaos. If you've never really experienced chaos, let me tell you, it's seamlessly both infuriating and beautiful.

And don't you think it's ironic that I got colon cancer? One of the images that haunts me my whole life is my guts spilling out and what happens? My guts spill out. Maybe I should take comfort in that. My guts spilled out and I'm still here.

Don't skunk me, bro!

Poor Murphy met his first skunk.

Scout was performing last night (he sings so purty!) and as we approached the front door Scout said, "it smells like skunk." I opened the door, walked back to the kitchen and wham! Skunk-tastic. Murphy smelled like burning tires, his eyes were all bloodshot and encrusted in mud. (My best guess is that he tried to root around in the mud to get the burning sensation to go away.)

I searched the internet for de-skunking recipes and we piled back in the car to the 24-hour drugstore to get hydrogen peroxide and baking soda. Murphy went straight into the tub where we lathered him up and let him marinate for 10 minutes. We tried to keep him in the tub while he squirmed and made Chewbacca death screams.

It mostly worked -- his face is still a bit stinky 'cause I didn't want to get the H2O2 near his eyes. Hopefully he won't go chasing those "mean, big, black and white kitties" ever again.

How can I learn to be more needy?

I'm feeling overwhelmed lately. I have many things on my plate that need to get done and I just feel like it's all piling up. Work stuff, grad school application stuff, medical stuff, daily household stuff -- none of it is that huge on its own but in combination with my lingering chemo fatigue, insomnia and recurrent pain from adhesions from my surgery a year ago I'm feeling like I might collapse under the weight.

Here's the thing, though - it doesn't need to be this bad. Yeah, it's a lot, but I've somehow always felt like I need to do it all on my own. I *know* that's not true and that I have lots of loving people who could help me out. Somewhere in my past I convinced myself I am Atlas. That if I don't hold up the world it will all come crashing down.

So what I'm pondering is this: if you know something in your mind, how do you incorporate it into your soul/heart/psyche?

I only teared up a little, tiny bit

When I was in the hospital recovering from my surgery I was on all sorts of funky drugs to speed my wound repair. One of the unintended side effects was that my nose piercing closed up.

I missed it. It had been part of me for so long. My face just looked off when I looked in the mirror. But there was no frickin' way I was going to intentionally cause myself one iota of pain by re-piercing it. Noooooo thank you. I had my fair share of pain from the surgery and the neropathy from the chemo. I was *done* with pain.

Until today.

Scout looked at me this morning and said, "we're going down to Haight street and you are getting your nose pierced again." And he was right. And we did. It hurt a little, but was so minor compared to, say, having a hemotoma drained. And because they didn't have to do a whole new piercing, it was only $2. Hooray!

The intense, unabated pain. One more thing I can leave behind as I slowly ease back into normality. Or whatever normal is once you've had cancer.

Just as I was justifying my right to be a curmudgeon.

Yesterday I was talking with a good friend about some of my feelings about the last year. I was lamenting that I feel like I have lost some sort of naiveté, lost more of that childlike ability to just do what makes me happy without all the "adult" thoughts of money or consequences or illness or death. I'm in my thirties, so it's not like that process wasn't well underway, but cancer took me through an accelerated version. I feel more like someone who might sit on a porch shaking my cane and yelling at those pesky kids to get off my lawn than someone who would drop everything and move to Australia for a year.

But the universe in its infinite wisdom wasn't going to let me get away with that. Oh no, it had other plans for me.

I went to a show last night -- a band called The Weakerthans. I haven't been out to see music in a good long while. This band has quite a following among the emo kids and the place was filled with twenty-one year olds in their retro eighties togs singing along to every line in every song. As I looked at the crowd my mirror neurons kicked in and I felt that obsessional joy that comes with seeing your favorite band live, that obsessional joy that dissipates somewhere in your late twenties. And I smiled so hard I almost cried. (Which in and of itself is very emo and so therefore appropriate.)

I've noticed that cancer has heightened my ability to feel other's elation. When I see a big smile or a moment of achievement (which I am lucky enough to see often in my line of work) I can actually feel it now. Not just appreciate it, but physically feel it. It's kinda tingly. It's funny 'cause my friends at the show were complaining about how bad the crowd was, how annoying it was to hear everyone singing along to every song, but I liked it. It unearthed the twenty-one year old in me.

So, yeah, I'm bitter. I'm jaded. But I'm also more open to delight. Life is too short not to take advantage of it every time it comes my way.

A small compendium of things my doctors can't explain

I am a big fan of Shakespeare. I think he's really funny and could write a hell of a good yarn. He also wrote some things that were really profound. One of my favorites is from one of his lesser known plays, Hamlet:

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Replace "Horatio" with "modern medical science" and you've got a pretty good description of what I've come to believe over the last year or so. Here is a small list of things that have happened to me that defy current scientific explanation:

1. About six years ago I was rubbing my belly in an effort to relax and go to sleep. When I passed my hand over my left side I heard a voice in my head, clear as day, "Watch this spot."

2. About 18 months ago I felt the same spot on my left side and heard the voice again, "There's something wrong here now." Two months later the pain started. Four months after that I was diagnosed with a tumor in that exact location.

3. Before and during surgery I listened to a guided meditation that suggested that I could divert blood away from the surgical site just as I divert blood to my extremities when hot and core when cold. My surgeon told me he was shocked that he didn't need to do a transfusion during surgery. Just use a little blood filler and I was good to go.

4. The same meditation suggested I could influence how I felt when waking up from anesthesia. I have had problems with this in the past but this time I woke up and felt fine. No nausea, no pain and completely lucid and awake. Had a nice chat with my recovery room nurse, actually.

5. I have been on thyroid replacement therapy for about 10 years. Once diagnosed, you take a pill everyday for the rest of your life. During chemo I felt a nausea wash over me whenever I picked up my bottle of thyroid pills. I decided not to take them. Why argue with such a strong reaction? I've been tested several times in the last few months and my thyroid function is now completely normal.


What the huh?

Okay, so I could argue that these are all coincidences, but c'mon. There's gotta be more going on there. Science and medicine is great and all, I wouldn't be typing this without it, but don't forget we don't know everything. We used to think the world was flat after all.

I always knew that frisky cat would get out of that flimsy bag

Dear family,

Last week I got a call from my cousin who wanted to let me know that my mom had found my blog and, therefore, knew about my cancer. As this blog is on the web I suspected this was bound to happen. I've been getting copious calls and emails from family members who have just found out. It's nice to feel the love. I wanted to explain my decisions a bit more. Since I know you're all reading this blog now and I don't have contact info for many of you, I thought this would be a good way to convey information. So here goes.

As most (or all) of you know, I have had a strained relationship with my mother for the last decade or so and have not spoken to her for several years. When I was diagnosed last year I was pretty freaked out, as you can imagine, and I thought it would be far simpler and less stressful to just keep my diagnosis private until I was done with treatment. I decided that I would only tell a few family members about the cancer on a "need to know" basis. This was mainly because I felt like it was unfair to put any of you in a position where you had keep this information from my mother. There are many reasons for this and I can explain further in private if you feel that it would help you understand this convoluted situation. I still think this was the right decision but I hope that none of you feel like it was a personal slight or feel awkward about contacting me now. It was a difficult conundrum faced under horrible circumstances and I do feel like I've made the best decision that I could.

If you want to contact me, please do. The love and support of friends and family has been so valuable in the past year and I don't think it's possible to have enough good wishes come my way.

Elephant Seals

Last February Scout and I drove down to Ano Nuevo state park near Santa Cruz, California. Every Winter thousands of Elephant Seals come to small strip of beach in order to mate. In order to get to the seals you have to book tickets in advance and take a 2 mi hike through sand dunes to get to the shore. I was two months into my chemo and not sure if I was going to make it, but I did! I was very proud of myself and had an amazing time.

The seals were HUGE (I think they weighed about 500-1000 lbs) but even more impressive than their size were the sounds they made. These enormous bellows that sounded like a cross between a sea lion and a Harley Davidson. I've been thinking of these guys a lot lately. Maybe because I seem to be crying a lot lately and making similar noises.

The nature guide gave us a lecture about the seals as we were walking to the mating site. The struggle the seals had to make to get to this beach hardly seemed worth it. Only a small percentage of offspring survive. Then they have to trek back to this beach. They weigh so much that they can barely move on the sand and mostly just lie around all day. Seems like a lot of effort. It made my two mile hike seem like a walk in the park. (Um, well, it was a walk in the park, but you know what I mean.)

Not sure why I'm posting this now. I've just been thinking about them. And how we are such different creatures, but we are both part of the same cycle of life.

Deep, I know.

An Open Letter to My Cancer

Dear cancer,

It's been exactly one year since we were introduced. I have to say you scared the shit out of me when we first met. In fact, you still scare the shit out of me sometimes. But a year has passed and we've had time to work out some of the rocky bits. Don't get me wrong—I'm still not happy with you—but I think we've managed to get past the blinding fear stage into something a bit more mellow, yet more complex.

Let's talk about that first introduction. One year ago today I woke up early to go to the hospital for my first ever colonoscopy. I wasn't worried. My sister had had many of them and she assured me the prep was the worst part. I was actually kind of curious, looking forward to seeing some of the images. What did the inside of me look like? I still have MRI scans of my brain that I had done about 15 years ago—I just I think it's cool to see the inside of my head. They suited me up in a scanty hospital gown, wheeled my gurney into the exam room, hooked up my IV and one of the nurses said count back from ten. So I said, "10, 9…Zzzzzzz" and I was out. I came to in fits and starts. I'd hear some fuzzy voices or see a flash as I opened my eyes, but then lose consciousness again. I have no idea how long this went on, but I do remember that in the fog I thought I heard my Gastroenterologist say, "Megan, you have colon cancer." And I thought to myself, "that's just my fear talking, my brain playing tricks on me. Don't be ridiculous, Megan, you don't have cancer." I went under again and that whole exchange was lost to me. Moments? Minutes? I don't know how long it was but I heard my GI again. This time she was telling me my sister was on her way. "My sister?" I thought, "Why?" Scout was waiting for me in the waiting room. Did something happen to him? Was he okay? I must have looked quite confused because my GI asked me, "Megan, do you remember talking before? Do you remember what I told you?" I had some very hazy memory of her speaking to me, but nothing concrete so I answered no. "You have colon cancer." "I…What?? That's not…but I… I'm too young for cancer. This is not what I was expecting. " Somehow I thought that if I clearly pointed out that I was way too young for this sort of thing and this is not what the brochure had promised, logic and order would prevail and somebody would tell me they'd made a mistake. "Your sister is on her way and your dad is flying up from L.A." How did she know this? Where was Scout? I had fucking cancer? No fucking way! This was just wrong. Wrong, wrong, wrong.

I went in and out of consciousness again for a while and suddenly my sister appeared by the bed. I don't know where she came from. I asked where Scout was and she said he'd gone for lunch, and was on his way back. So he didn’t know. Since we're not married, they couldn't tell him the diagnosis. Which meant I was going to have to tell him. Well, shit. Scout came in and the three of us went to a little room walled off by privacy curtains. Then I introduced you two. "Scout, I have cancer." I couldn't hear your response from deep in my colon, but I'm guessing it was along the lines of "Rowwwr...gurgle... puthah!" or something. Whatever it was, you managed to scare the shit out of Scout, too.

For the next nine moths or so, you had the upper hand, at least physically. Surgery and chemo left me a pitiful shambles. But mentally I was ready to smash you to pieces. You weren’t ever going to get me to give up. I should walk as soon as I can after surgery? I took a lap of floor five the next day. Chemo might mess with my blood cell counts? I did a meditation every other Wednesday (a.k.a. chemo day) to imagine my healthy cells fending off the chemo and only the cancer cells getting hit by the toxins. When my oncologist suggested we might reduce dosage to make me more comfortable, I always thought, "no, I wanna make life as miserable as possible for any cancer cells that still think they might get away with it." I was in full battle mode. Cancer, I was going to smash you to smithereens and come out stronger on the other side. Take that! Bam! Pow! Smush!

Then the war was done and now the peace process has begun. I wish I could say that I left the chemo room on my last day of treatment, walked out on the street, and threw my hat up in the air, MTM style. It wasn't as much "you're gonna make it after all!" as it was "can I just go home and curl up under a blanket now?" And so I've tried to spend the last four months making peace with you. You've brought some good things into my life. I am now much more in tune with what's important to me and how I want to be in this world. My friends came out in full force to surround me, help me and shower me with good lovin'. I am more able to live in the moment. The knowledge that each moment is sacred really hit home when I realized that I might not have that many moments left to savor. I stop to look at birds and squirrels and trees in the wind. I eat fruit with more lust. I rub my kitty's belly when he's eating for as long as he wants because, really, is there anything more important that I have to do right now? I know the depth of my strength. It's pretty deep, my cancer friend.

But just as you brought out my strength, you've also brought out my demons. Issues? Oh yeah, I got issues. I'm dirt poor. I'm not even quite sure I'll have the money to pay the rent next month. I haven't told most of my family about you, save my sister, my dad, one cousin and my uncle. Why? Because of where you came from: my mother. You arose because of a mutated gene I inherited from her. Ah, mom. She's only really a mother in the vaguest, most scientific form of the word. I haven't spoken to her in about 7 years because of the horrible effect she has on me. (Did you ever see "Mommie Dearest", cancer? She considered it a parenting how-to film.) One of my first thoughts after being introduced to you one year ago was "please don't let my mother find out about this." And so far the family that I have told have helped me keep you two from meeting. But I have to decide what to do now. Do I ever tell her about you?

Then there is the whole breaking-through-the-colon-wall-and-invading-my-uterus issue. On this one, I have to say, I don't think I'll ever be able to forgive you. You see, I haven't had kids yet. And I really wanted to. So, for you to take my uterus like that is just really fucking evil. I know I can adopt and it's something that I even considered before all this but for you to just take away my options like that, well, for that you suck. I'll never know what it's like to be pregnant. I'll never know what it's like to give birth to a tiny baby and know that I made that! I made it from love and sperm and eggs and I nurtured it and made it a whole and happy baby. I am still having a hard time looking at pregnant women or seeing women with their cute babies in their arms. I get mad, cancer, really pissed off at those times.

So here we are. You are hopefully dearly departed and I am trying to pick up the pieces left in your wake. I know that your memory will fade with time. In a few years, when I look back at how much I was still entangled with you at our one year anniversary, I'll be able to sigh and say "glad that's over." But for now, I'm still figuring out how to negotiate our peace. How to get to know this new, post-cancer me. How to let go of the sadness, rage, grief, injustice and fear. How to hold the love, kindness, laughter, gratitude and interconnectedness of it all. I'll get there. Slowly. With patience, compassion and an open heart.

One day maybe we'll even be friends.


With love, because that's the strongest weapon I've got,

Megan

The Force in strong in this one

So, y'all think I should use the Force?

Okay, I'll go get my divining rod, close my eyes and see where it leads me.

I'll post when it leads me somewhere good.

I'd like to poll the audience, Regis

I'm just going to put it out there and, in the parlance of reality shows, let America decide. (Although in this case I know there are some international votes out there, too.) I know most of you don't know me personally, but that shouldn't stop you from making a snap judgment about my life. So here goes:

I have a choice to make. I want to go back to school and I am trying to decide between two paths: Library Science and Sonographer.

Before I was diagnosed I had just started a Master's in Library and Information Science. I was doing school part-time, working full time and then, Bam! Cancer. It was going to take me about 3.5-4 years to complete my masters this way, but I don't hate my job or anything so that was fine. I had dreams of being an academic librarian - helping with research and getting to learn cool, new stuff in the process, getting on the tenure track, going to some gorgeous, old, gothic library in the middle of an ivy-covered campus for work everyday. This is, like all fantasies, an idealized version, but you get the gist. In the end, I'm a nerd -- science, books, films. You name it, I nerd in it.

Then cancer happened and I realized a few things. About 10 years ago I had gone back to school to take a whole bunch of pre-med classes in the hopes of becoming a doctor. It's a long story, but eventually I decided not to, mostly because the thought of working in the crazy, f^&%ed up American healthcare system and going $100, 000 into debt from student loans sounded too unappealing. I still don't think getting an MD is for me, but while cruising the internet one day in my chemo haze I came across the idea of being an ultrasound technician or "sonographer" as they prefer to be called. This was appealing for a few reasons. First, it was still in the patient care field that had appealed to me as a pre-med, second it was intellectually stimulating (it's a bit like solving a 3-D puzzle to get the image right) and third it pays reaaalllllly well. Which, b.c., never was that important to me but one heinous year and thousands of dollars in co-pays n' crap later (which, I have to thank my dad for paying for -- I would have been in massive debt at this point without him) is something that seems more important.

So, what to do? I have decided that either way I think I will take some time off work to be a full-time student. If I do, the Sonography program will take about 1 to 1.5 years and the Library Science about 2.5 years. So, obviously, I can start to make some money sooner with the Sonography and replace my cancer-demolished war chest sooner. Both are cheap programs through state schools. (Go publicly funded education! Woo woo!) The Library Science would offer me more diversity in career options. The Sonography would allow me to travel much like nurses can. Really, there are pros and cons for both.

So, friends and random strangers reading my blog, what should I do? I have put up a poll on the top left side of the blog. It'll be there for a week. Go ahead -- you make the call! The power is in your hands, America!

What... should... I... do?

One more hallucination, for old times sake...

While on chemo I was taking deacadron to help control the nausea. Decadron has many interesting side effects, one of which is hallucination. These hallucinations manifested themselves for me as odd phrases popping into my head at random moments. I remember once there was something about a train in Madrid scheduled to leave at 3pm and another time something about the meaning of cloud formations. They were generally quite poetic and, aside from the creepy feeling of my thoughts being out of my control for a second or two, I didn't really mind. Haven't had one in months, but today while walking down the street to my office I heard a voice as clear as day:

"Landed Gentry"


What does it mean? What great insight into my psyche can I gleam from this? Is it a potent of my future? A memory of a past life? Random misfiring of some bored neuron?

I guess we'll never know.

cancermullet

A few years ago I became enamored with mullet websites such as mulletsgalore. While bored at work, I would peruse pages and pages of photos of different mullets. These mullets were classified into categories with names like "cameromullet" or "meximullet". They always cracked me up. Who would *do* that to their hair?

Sadly, I have unwittingly cultivated my own category: "cancermullet"

My hair is growing back, which is good, but the new hair is now about 3 inches long which, apparently, is bad. The new hair seems to stick up and out and then the old, thin hair kind of falls limply to the sides and back. (See embarrassing photo above.) It's kind of like a pompadour/mullet, but it certainly has the business in the front/party in the back quality that all mullets share.

Sigh.

I guess that's what happens when you judge people for having mullets. The universe gives you cancer and then you have to live the mullet lifestyle for months while your hair grows back.

I will never make fun of anyone's hairstyle again. I promise.

Cause there might be something in there

I just finished watching Kris Carr's "Crazy, Sexy Cancer" about her diagnosis and cancer journey. She interviewed several other women living with cancer including the playwright/actress Oni Faida Lampley who said something that made me zingy:

"Everybody has something you either get to accept or fight your whole life long. Now, what do you wanna do? Do you want to fight against what's really happening? Or sink into it somehow. Cause there might be something in there."

She's right on. Sink into the things that scare you. That's where you'll find your true wisdom. And you know what? Once you know something, have explored all its crevices, dark alleys and spacious ornate rooms, it can't scare you anymore. Cause fear is a product of not knowing. Intimacy is the cure for fear.

3 doctors, no problems

In the last 2 days I have had three doctor's appointments. The first was with a new internist yesterday. He gave me the all clear - my general physical exam was just fine. This morning I met with my OB/Gyn for my yearly exam. She says everything appears to be okay. Then I hopped across the street to meet with my oncologist for my 3 month follow-up. Apparently all my blood work was fine and my CEA level (a test for cancer antibodies) was normal.

Normal? Fine? Okay?

I don't even know what to do with those results. I'm fine? But I had a horrible anxiety headache and felt like I was going to vomit all morning and I barely slept last night. Was that for naught? Am I really fine?

Well Hoo-Ya!

Fingers Crossed

I'm going for my 3 month checkup tomorrow. I can't hardly believe it's been 3 months since I've finished chemo. In some ways it feel so long ago. I am back to doing most of my favorite activities -- I am cooking and baking again, I can easily walk the dog to the park and I have eyebrows. (Eyebrows is one of my favorite activities?) But in other ways I am reminded of it everyday. Numb fingers and toes, I have to wrap a rubber band around my hair four or five times instead of once or twice, I still forget things occasionally and have trouble remembering the most common words.

I wonder at what point I will feel convinced that I have kicked cancer to the curb. Will I wake up one day and say, "that's it cancer, you can't have any more of my time!"? Or will it be gradual, like realizing you are finally an adult (gee, I probably shouldn't shop in the juniors' section anymore.) In any event, I feel more at peace with it than I did 3 months ago. And, surprisingly, I have come out of this feeling like I am in control. The most crazy, unexpected thing in the world happens to me and I feel like I'm in control? Hmmm, there's a stumper.

Yet another reason why I should listen to my body

I've been trying to eat better since I was diagnosed. My cousin signed me up for an organic produce delivery service (Yum!) and I've been eating more poultry and fish and less red meat. And let me qualify this by saying that before all this I *loved* red meat. Would eat it everyday if I could. Burgers, steaks, lamb chops. Oh, I loved it all.

Since I stopped chemo I've noticed something weird. I don't want red meat anymore. The thought of it makes me feel a bit sick, actually. Which is really perplexing. Then, something equally as strange happened the other day; I got some fries, ate about 10 of them and then stopped. I just didn't want them. Who doesn't like fries?

Then, I read this today:

http://jama.ama-assn.org/cgi/content/short/298/7/754

It basically says that if you eat a diet high in red meat, fat and sugar you have a 350% greater chance of colon cancer reccurrence.

Woa.

I'm telling you folks, just pay attention to your body. It has more wisdom than you know.

I like Chinese food, but Chinese food doesn't always like me

I think Chinese food is great. You get your protein, your veggies and your rice. What more do you need? Thousands of years and millions (billions?) of Chinese people can't be wrong.

Sometimes, though, the Chinese food doesn't love me back. (Sigh.)

You see, gentle reader, I am viciously allergic to MSG. If I eat even a small amount, perhaps a picogram, I get a migraine lasting for four or five days. If you don't know anyone who gets migraines I'll just say that a friend of mine once said that the only pain she's felt that comes close to that of a migraine is childbirth.

So, I generally steer clear of Chinese food. But really, can one be expected to live without it completely? No, the answer is clearly no.

Here begins my quest: find good tasting Chinese food delivery with no MSG. And not just one whose menu says "No MSG" because I can tell you many stories of charlatans and hucksters who claim "No MSG" but have poisoned me with their evil brew, nonetheless.

Last night, I dared to dream the impossible dream -- I ordered Chinese delivery.

It came quickly, 20 minutes or so, and smelled wonderful. I spooned out some Hunan Chicken and rice and put 2 potstickers on a small side plate. Then, I opened my mouth and shoveled it in. "Once more into the breech!" I cried as I dipped a potsticker in sauce and took a gigantic bite.

Then, I waited. If I was going to get a migraine I would start to get the auras (little visual hallucinations) about 30-45 minutes after the meal.

30 min passed. 40 min. 1 hour. No headache! I have found a Chinese restaurant that loves me back!

Hooray for Hunan Cafe #2!

Fear Nugget

Today I am home in bed, sidelined by a cough/sore throat/fatigue-like amorphous sickness. Nothing serious - just a bug of some sort. Mildly annoying as I was supposed to take an overnight trip to the coast with a friend, but harmless overall.

I had been lying in bed with my cat, Gatsby, sleeping on my lap, reading one of those thrillers that cater to the ego of the intellectual but are really just high falutin' airplane books, when I felt a familiar tightening in my chest, somewhere just below my diaphragm. "Fear" I thought, "that's a feeling of fear." I stopped reading so I could pay attention to what my body was telling me. At first I assumed that the fear was a product of being alone in my house - I have a bit of a phobia of someone breaking into my home - but that didn't seem right. So I closed my eyes and opened my heart to what I was feeling. The fear surged and I understood.

Fear of sickness. My body was sounding the alarm.

Who knows what triggered it - my immune response, the pain of my sore throat, the act of lying in my bed all day reading - but my body knew. And it knew to be scared. As soon as I'd made this realization, the fear subsided and I welled up with tears. Grieving for the trauma that I've had to endure for the last year. Grieving for the fact that a slight cold set off the panic response. Grieving for the loss of naiveté of just having a little bug that will pass in a day or two.

All in all I think I'm making forward progress with my psychological and physical recovery. I've (mostly) passed through a period of intense depression that followed the chemo, I've had some very encouraging test results from my MRI and I've started exercising again. But then there are moments like this. Moments when the past infects the present, defense mechanisms sound the alarm and for a brief minute I am living the cancer again.

It reminds me of the Godfather, "Just when I thought I was out they pull me back in."

Or, as Quint says, "Bad fish! Not like going down to the pond and chasing bluegills and tommycod. This shark, swallow ya whole. Little shakin', little tenderizin', down you go."

Okay, I know... life cannot be summarized by movie quotes. But I still say Camus' got nothin' on "Jaws."

Dream a Little Dream

Last night I was lying awake at about 3am trying to will myself to sleep and letting my mind wander. I thought about my eggs in my one remaining ovary and the fact that, once released, they have nowhere to go now. No fallopian tube, no endometrium. I was struck by an image of my egg detaching from my ovary and slowly floating away into the extracellular space.

Whoop, bang! I suddenly had a very vivid memory of a dream I'd had during chemo.

I am an astronaut on a space walk outside my ship. I am performing some routine task when I get detached from the ship and gently pushed away. I watch as the space between myself and the ship increases very slowly. There is nothing I can do. Once I start floating away from the spaceship there is no way to "swim" back due to the absence or air pressure and there is no friction to slow down my motion. I panic. I know I'm going to die. I watch as the ship gets smaller and smaller until I am not sure if I can make it out at all and then it is gone. I think about what will happen to me and conclude that I will die of dehydration in a few days. (In the light of day I realize that I would probably suffocate or freeze first, but in the dream it's dehydration.) I look up at the stars and they are beautiful. Nothing but stars everywhere. No horizon, no spaceship, just points of light surrounding me. I realize that I have this amazing opportunity to just float among the stars for a few days, with nothing to do but soak in the sight of them. Since I'm going to die, I can just let go of everything else except the beauty of my starshow. And so I let go. The panic subsides. I am truly living in the moment for the first time ever. I have no future to worry about and no way to save myself. I am free to just gaze out for as long as I have left and look at this sight that most humans are not lucky enough to see.

Technology tells no lies

Last week I went in for a pelvic MRI. I had a cyst in my one remaining ovary and they had done a CT scan, an ultrasound and finally an MRI to make sure that sucker was benign. The verdict was that I have several small follicular cysts - normal cysts involved in the ovulation process. Good news!

And for more good news... while I was in the MRI tube they did an abdominal scan to make sure everything looked okey-dokey. I am the proud owner of a healthy liver, pancreas, kidneys and I have no enlarged lymphnodes. Woo Hoo! I ran around the house screaming "Yay!" for about five minutes after I heard the news.

Hopefully this will calm my nerves a bit and help the achingly slow realization that I am cancer-free.

"Never go up against a Sicilian when death is on the line!"

For your next sensitivity training seminar: How *not* to respond when someone tells you they have cancer.

Me: I just finished chemo for cancer.
Well-Intentioned Man on Phone (W.I.M.P.): Oh, I'm so sorry. My dad died of cancer.
Me: Oh, I'm sorry. I'm only 34, so I'm hoping that doesn't happen.
W.I.M.P.: Wow! You're young!
Me: Yes, I know.
W.I.M.P. : I hope you'll be okay.
Me: Thanks.

In case any of you out there are unaware, I already know that people die of cancer. In fact, I plugged in my details to an algorithm on the Internet and I know that I have a 17% chance of dying of cancer in the next five years. So, next time you run into someone who tells you of their diagnosis, perhaps your father's death is not the most comforting thing you could mention.

Just a suggestion, of course. ;-)

ESP of Purpose

Yesterday I got an email from the MLIS graduate program I had been attending last fall when I was diagnosed. It's enrollment time again. Which brings up the question that seems to be a theme with cancer survivors - what do I do now?

There's a bit of expectation that surviving cancer will transform you into a little Dalai Lama or Thoreau or Oprah - someone who sees more clearly than ever their "purpose" in life. Someone who has stared the beast down and now has some sort of strength unknown to mere mortals. And while there is a kernel of truth to this - anything that might have seemed daunting before would probably be a cakewalk now - I'm not sure that I have any better sense of purpose than I did before. I feel a bit like when an elementary school teacher says "not working up to her potential." But my potential for what? Do I need to be a phoenix rising triumphantly from the ashes or can I just step out of the ash pile, shake off my tail feathers and mosey on down the road?

I know all of these "expectations" are internal - this is not a new theme for me. I've always had periods of my life where I feel like what I'm doing is not enough. Although not enough of what, I'm never sure. So, when I start to feel like I'm not successful enough, I ask myself, "But, are you happy? " If the answer is yes, then I feel like I must be in a good place. I think the issue right now is that I'm not happy. I'm sure at some point I'll feel happy and grateful that I didn't die of cancer at 35, but right now, in the midst of lingering side effects and uncertainty of reoccurence I mostly feel bitter.

I know that the best thing you can do with any emotion is just let it take it's course. I don't place value judgments on "good" or "bad" emotions - they are all part of all of us. So I'll be bitter for as long as I need to. But you may want to stay a good 2 meters away until further notice. Or maybe dive right in and give me a hug. I dunno.

Cancer Half-Way House

I was warned that there is a post-treatment malady. That it's psychological not physical, but nonetheless prevalent. I've head it called "The Void" and I think that's a pretty accurate description.

When all the treatments are over and you are no longer talking to your doctors and nurses every week there is this void. I spent all my time and energy fighting - fighting cancer, fighting chemo side effects - and now I wake up every day, still feeling a bit crappy from lingering chemo in my body, and I think. I think about whether we've done enough to fight the cancer, I think about my job (Is it really what I want to do? If not, what do I want to do next?), I think about my now completely depleted savings account (which usually brings me back to my job), I think about my relationships and where I live and how I live and if I've made the right decisions with my life....

And through it all there is a sadness. I can't really explain what the cause is, but I feel like I've lost something. Some sort of innocence or naivete. I look at the photo I have posted on my blog and I feel like I'm looking at a photo of someone else. Someone who hasn't gone to war. Perhaps we should bring cancer survivors and soldiers returning from Iraq together. I bet we'd have a lot to teach each other and a lot to share.

I now know the power of my strength as well as the depth of my despair. It's all yin and yang - I experienced both extremes. The point is, maybe I didn't want to know. But I didn't choose and I can't go back.

All I can hope for is that the Emerald City is up there ahead. And that these stupid flying monkeys leave me alone. The only thing worse that evil, trained monkeys are evil, trained monkeys with wings.

Pants

Lately I've been missing pants. I can't wear them for very long because my surgical incision is still healing and gets red and angry at zippers and buttons. Skirts are great and all, but sometimes you just want pants.

Oh, pants.

Watch out, Carol Brady!

My hair is beginning to fill out again. I was lucky in that I didn't lose all my hair, but it certainly thinned out. So now that it's growing back, it's thicker near the roots than at the ends. This has caused me to have a hairstyle that would have been all the rage in the late 60's. Kind of like a bouffant with a flip at the end, but with more frizz and less superfly style. My hair is about shoulder length now, but if I cut it a bit shorter and did the shag thing I could totally pull off the Carol Brady. It's kind of tempting....

Giggle

Last night I was trying to get my puppy's attention. His name is Murphy, but due to a brain fart, I yelled out "Murpy". Then they started. For some unknown reason I found the sound of "Murpy" really funny and I got the giggles. You know - laughing so hard you don't even make any noise, tears streaming down your cheeks, sides hurting from laughing for so long - the giggles.

Haven't had the giggles in *while*. While I've cracked macabre jokes through this whole cancer bullshit, and I've snickered a time or two, I haven't had the giggles once. Things were not really that funny.

So, I take this attack of giggles to be a sign that I am moving on, getting better, and able to let go in a way I haven't for many months.

Hee Hee.

getting better all the time

Three weeks out from Chemo. Withe the exception of my neuropathy (numbness and tingling in fingers, feet and mouth) I'm feeling a little better every day. The oncologist said that the neuropathy would get worse before it got better, so I was expecting it. It's frustrating, though. Chemo isn't something that ends and then your done with it. You finish taking the drugs and then have to wait for your body to do it's thang and rid itself of all the toxicity. I've been told that some of the side effects can last for up to a year and some could even be permanent. I just want to be done. I know that I will get better and better every day but somehow it feels like a raw deal to not just be done and have it all be gone. Hrumph.

In other, non-cancer news I started a part-time summer job today. Meeting high school exchange students at SFO and helping them get to where they need to go. I think it will be kinda fun. It's gotta be better than the job I've had for the last nine months: sitting in a chair about to barf. I really have to say that I don't recommend that job. Also - doesn't pay well enough.

In other, sort of cancer related news, Scout needs your love. Specifically in the form of leg massage. He went to see my acupuncturist today and she said she hadn't felt such tight muscles in years, it felt like he'd just run 20 miles. She recommended he get massages regularly to deal with the tension. So, if anyone wants to volunteer or buy him a gift certificate, I'm sure he would be mighty grateful. Poor Scouty - it's like he's a cancer vortex.

Okay, cyberkids, I gotta sign off. It's been a blast kvetching to you.

You are all superstars.

Psychoactive

I'm finally starting to feel like myself again. It's been a week since the last chemo and the chemicals are starting to leave my body. Only this time, I don't have that good feeling followed immediately by a feeling of dread that in a few short days I'll have to feel crappy again. It's such a relief!

I've also realized how much the decadron affected my mood. Steroids are no fun! Down with steroids! I felt grumpy and slightly psychotic for 6 months and now that I'm back to normal I've realized how much of it was the drugs and not just cancer emotions.

Well, it can only go up from here, as they say.

Dishes are done, man!

It's now 4 days after my last chemo and I'm starting to crawl out of the chemo hole. (Kind of like a K-hole but without the high and with stomach cramps.)

Today is the fist day I'm actually starting to feel done with all this mess. So, I have one thing to say:

FUCK OFF, CANCER!

Good, I got that off my chest. Now I can move on.

If only it were that easy....

Hooked up for the last time

Today I got hooked up to my last round of chemo. I'm kind of incredulous that I've made it this far. I'm still not completely done - I have a pump on me 'till Friday - but the end is in sight. I've really been trying to take this day by day. It's way too much to handle if you try to look further ahead. But today, I'm looking 2 days ahead, to the end of chemo, end of hair loss, nausea, achy muscles, steroid puffiness and all that crap.

It feels really good. That's the first time I've been able to say that in a long time.

My oncologist says there's little chance of cancer returning. CT scans every six months and colonoscopies every year, but other than that I can get back to normal life. Well, normal life with the new found knowledge that, as Hedwig and the Angry Inch aptly put it, "Enemies and adversaries, they try and tear me down. You want me baby, I dare you. Try and tear me down."

And the roller coaster goes down and then up....

Feeling better today. Less scared and more kick ass. I think It's 'cause I sent out an email asking peeps if they wanted to come to my last chemo and cheer me on and I got such great responses from my friends. It's made things less lonely, less bleak.

When I'm just alone in the space of my mind the cancer fear can grow unmitigated. But with friends there it helps stamp it out.

Friends are good. I'm so glad I have my share of them.

Chemo Stockholm Syndrome

I'm feeling scared. Chemo is ending next week and all I can think about is that there will be nothing fighting the cancer except my immune system. There's no way I want to continue chemo, but at the same time I'm now feeling dependant on it to keep the cancer at bay.

Me and Patty Hearst. Now I know how she felt.

All the CT scans look good, everything has gone as well as can be expected, but I still feel like somehow once chemo is done, all hell will break loose. Partly it's because you can't see cancer. It's not going to give me a rash or a stuffy nose if it comes back. It will just lurk. I hate lurkers.

I had a nightmare last night that was long and involved, but ended with me finding people that had been chemically treated and put into mason jars. I opened a door and all of the deformed looking bodies in jars looked at me with so much fear in their eyes. My cousin pointed out that this dream was about rescue. I wanted to rescue these people, but they had been damaged beyond rescue. Maybe that's how I'm feeling about myself right now. What if I'm damaged beyond rescue?

I'm going to have to learn to live with this fear, I know that. Now that all my medical treatment is coming to an end, I'm starting to feel more deeply all the emotions that have been in denial. I've just been pushing through, trying to make it through surgery, through chemo. Now that it's ending I have to face the stuff I've been aware of but not really feeling. Haven't had the space to deal physically and mentally all at once. I guess it's time to face these demons.

Well, I've made it this far, so bring it on. I'll make it, I know I will.

If...I ...can...just make it....Argh!

Finally feeling well enough to post after my chemo on Friday. I still can't believe I only have one more.

I'm starting to have mixed feelings about it. I've been warned by other cancer peeps that this happens - I won't have anything actively fighting the cancer anymore. No chemo, no surgery. It will just be in there, doing its thing. And I don't know if "its thing" is dying a horrible death due to my immune system or multiplying like crazy and having a party in my pancreas.

I think the unknown may be the scariest part of all this. The loss of control from not knowing seems like it will be all consuming. But, I will have to learn to come to terms with it. Just like I've come to terms with a million other things in the last year that seemed insurmountable. With time, this too shall pass.

Lymphatic Drainage

This post will be short and sweet 'cause I had oxylaplaitin yesterday which makes your fingers all numb. Anyway, I just wanted to report that the lymphatic drainage really seemed to help me feel better. I felt more energetic and stronger that I had in months. I recommended it to any non-metastatic cancer fighters. I'd ask you oncologist if it's metastatic - It may not be best to be spreading body fluids around at that point. I dunno....

Soo good.

Of course, that was Tuesday and yesterday they put me back on chemo, so I'm feeling crappy once again.

But, this is my second to last cycle. Woo Hoo.

Kinda feel like that last few weeks of school where you know if you can make it through finals you'll have the WHOLE summer school-free. Liberation!

I can't serve in the foreign service

One of the cliched things that has happened to me since the cancer diagnosis is an evaluation of my career/lifepath. I currently work as a tutor for high school and college students and, while I really like it, it doesn't make me nearly enough money to have things like a house or a retirement plan.

I've considered lots of options, but recently I thought to myself "what do I *really* want to do with my life?" I realized that I want to feed starving people. Everytime I don't finish a meal or clean out my fridge I always think that there are people who are one meal away from starving to death and with what I've just thrown I could have saved a life. And I get frustrated that I live in a land of plenty where collective leftovers could feed an entire nation.

So, I looked into the World Food Program today (part of the UN). In order to work at the WFP you have to become a foreign service officer. Well, no problem, I've always been good at tests and I'm sure I could pass any background check. However, there is a medical background check as well. You have to be free of any chronic conditions that may not be treatable in the foreign lands in which you may be working. I'm sure cancer is on their list of chronic conditions.

So now I'm angry. I feel a bit like some sort of leper. (not that I have anything against lepers, I'm sure they're lovely people.)I'm frustrated that this random DNA mutation keeps me from getting a certain job. That seems unfair to me. What if I sign a waiver? I'm sure that I could come back to the US once a year and get my colonoscopy.

Grrr. Argh.

Oh well, another of life's dreams smashed. I guess I'll save the world some other way. Sigh.

Everybody gets a hug

I went back to work today and stopped at the coffee house across the street beforehand. I used to go everyday before the "Big C" but haven't been around in a while.

Immediately, the woman who works there started peppering me with questions, "Where have you been?" I told her I'd been on medical leave and she asked what was wrong, so I told her the v. short version of the whole story.

She then told me that her nephew in El Salvador has bone cancer, has had one leg amputated and has had the cancer spread to his hip, where they can't operate. He has a few years to live. She said "Hold on! I'll show you a picture!" She brought back a photo of a handsome, smiling young boy with only one leg sitting next to his grandma.

"He's smiling!' "Yes, he's very happy." I asked how he kept up his good attitude. I mean, if I were 17, had one leg and terminal cancer I don't know if I could muster a smile, let alone look so happy and proud in a picture. She said that he always tried to remember when he could run and play and that made him happy. Also, he was on the list from the American Cancer Society to get a prosthetic leg and that made him happy.

All I want to do now is get on a plane, fly to El Salvador and give that 17 year old the biggest hug ever. How amazing.

I find this boy so brave. And yet, when people call me brave I just shrug it off. I tell them I'm just doing what the doctors tell me will save my life and dealing with how crappy it makes me feel. It's not bravery, I tell them, you just do it.

But that's exactly what this boy is doing. Just getting through it. And I find him remarkably brave. So why is it, yet again, that I can't be as kind to myself as I am to others? I meet another cancer patient and we hug. It's an unspoken bond. But am I giving myself enough credit? I am one of those people that treat others with much more kindness than I treat myself. I never see my accomplishments as anything special. Just something I did.

I want to be my own best cheerleader. I will always continue to be so proud of the people in my life, but I think I need to turn some of that inward. Most of it inward.

So I will start here: I am fighting fucking cancer. That is something to be proud of. I may still not think of myself as brave, but I have been through such an ordeal in the last eight months that I have a right to be proud of surviving it with at least my sense of humor and about 100 hairs intact.

Everybody gets a hug today. Including me.

Head Cold

Haven't posted in a few days. I got a nasty head cold that has prevented me from wanting to do anything but watch the National Geographic Channel. I love that channel! That and Discovery Health Channel, which Scout refers to as "Megan's Surgery Channel". How do they separate Siamese twins? I wanna know!

I have 2 (Two!) more chemo treatments left. That finally seems like a do-able number. I am excited to be done and finally let my body rid itself of all the toxic chemicals and steroids that they have been pumping into me. I know that it is killing the cancer, but it's also bad for my system. Bad for me and good for me? Kinda like chocolate! Mmmmm....chocolate chemo.

My friend who is a holistic practitioner, Sid (www.synergywellness.org), recommended I try some Lymphatic Drainage to help my body get rid of toxins. I'm going in next week to a local practitioner and I am excited to see if it works. Anything to get out of the chemo hole. I want to come out of this whole cancer experience healthier than when I went in.

Okay, back to the surgery channel.

Not the usual bouncy, fun Megan

I've realized that these last few posts have all been rather morbid or depressing. I think as the chemo wears on the "cumulative toxicity" of the chemo drugs has finally worn on me. Months of feeling like crap, between surgery, pain from surgery, and chemo has finally made me made me a bit depressed. Normal, I would assume after all this medically sanctioned battery.

If I felt this bad after a bar brawl I would sue. Or call Inger, Laura and Margot to beat them up. but it's not really culturally acceptable to beat up your surgeon and oncologist. Besides, if the cancer comes back I would need them around. Oh well. Sigh.

Anyway, I guess I just want to apologize in advance for being a bit of a downer and a grump for the next 6 weeks. And if you ask me how I am I might just tell you the truth, so be warned, mateys.

I walked right in and asked for it

Some good news - I finally physically went to my Dr's office and asked to see my CT scan results (after 3 days of waiting for someone to call me back.) No sign of the tumor, my pain seems to be scar tissue related. So relieved. I really hope I have kicked this fucking cancer's ass (no pun intended) and it will be gone forever. FOREVER!

Getting so freaked out when waiting for my results reminded me that underneath all my strength and endurance I am still scared shitless. I really don't want to die. Not at 34. Or 40. Eventually, yes, but not anytime soon.

But I have little control over this. How do I come to accept that whatever happens is not under my control? That may be the scariest part of this. Every time I have a CT scan or a colonoscopy for the next five years I will be scared out of my mind. Last September when I woke up from the anesthesia and was told I have cancer I was too shocked and numb to feel the fear. But no longer. The fear is there, always lurking and coloring everything with its black and blue undertones. What if it's cancer? What if it's cancer? What if it's cancer?

Someone asked me today if this is the hardest thing I've ever gone through. It's actually not - I spent almost 10 years trying to rebuild my sense of self after 18 years of a crazy mother who used to tell me things like "It might be better for this family in the long run if you killed yourself" and "No one will ever love you because you are too fat." Yes, she was a charmer. That was harder - more emotional pain than physical but harder all the same. I keep trying to remind myself that I never thought I could ever be "normal" after years of crazy mom, that depression and misery was just my lot in life. But I did conquer that and I need to remind myself that I can conquer this, too. That the impossible is possible. That I am stronger than whatever life may throw at me.

And if it does kill me, well, at least I've felt true happiness. That's more than I thought I'd ever get.

And the waiting contiues...

Still no news on the CT scan from last Thursday. Left 3 messages at the dr.'s office today, but so far no response. (It's 5:30pm, I don't think anyone will be getting back to me today.) I know that the results are back because the receptionist told me they were. I guess for insurance reasons or whatever the receptionist can't tell me what these results actually say. I find this extremely frustrating. Someone, in fact several someones, know and have read my test results. They know whether my cancer is back or not. But due to legality they can't tell me. And the people who can tell me are too busy to call me back.

I just want to know if I still have cancer, godammit! Argh!

The medical system is on overload and people like me are suffering the consequences. It sucks. Plain and simple.

I have an appt. to get a blood draw tomorrow which is across the street. I think I'll march into the office and just ask for a copy of the test results. Hopefully it's not illegal for them to give me my own damn results.

Don't mind me. I'll just be here seething in the corner.

Waiting for test results becomes numbing

I had a CT scan yesterday, just to make sure the pain I'm feeling in my left side is indeed scar tissue and not another tumor. (I'm on chemo and if another tumor popped up during chemo, I will be impressed at the fortitude of that tumor. I may just have to give it a little bow of respect.)

So now I am waiting for a radiologist to read the scan, make a report and send that to my surgeon. This should make me mildly freaked out and I am a bit scared 'cause bad news just seems to be a theme this last year. But mostly I don't care. If they find another tumor that means more surgery, more chemo, more, more, more. And I find myself kinda resigned to it. I think I may have hit my wall where I'm so sick of pain, discomfort, fatigue, roller coaster emotions that I have nothing left to give to anxiety over tests. If it's bad news, we'll cope. If it's good news, we'll cope. What else can you do?

I realize this post is at least mildly depresing, but those are the stakes in Cancer World. Just like in the real world there are ups and downs. But no tumors.

Last night I wanted to eat my puppy's head

I was feeling particularly pain-filled and crappy last night. I'd taken all the right pills and was still feeling like I'd been through a mulcher. I crawled into bed, got fetal, and cuddled with my puppy. He scooched around a bit and then nuzzled his head right against my cheek. I could feel his breath on my face. I think that was the only thing in the world that could have made me feel better at that moment. I wanted to just consume his puppy love and eat him up.

This blog is a shout out to all our pets. They give us this unbelievable unconditional love that I don't think humans, with our scarred childhoods and daily stresses, could possibly ever duplicate.

Go little puppy, go!

Ebay Me Baby!

Note: the following blog contains unrepentant and shameless plugs for me, Megan "shortcolon" Caper.

My Ebay auction is finally up! If you want to help me out with medical bills and general life expenses go to Ebay and search for "Meganc". There are 31 wonderful items that my friends have donated and that you, yes YOU, can bid on to help me out. Some of them are San Francisco only (like Yoga classes), but some can be shipped, so bid your little hearts out!

Also- I want to send my love to all the families, friends etc of the students at Virginia Tech. I can't imagine the pain and heartache. Wish I could take it all away.

Nine of Twelve

Good News: Tomorrow I will be completely done with chemo 9 of 12. My oncologist and I decided to stay at full dose for the time being. My blood work all looks good and we're going the best we can to eliminate the side effects.

On the bad news front, I have been having periodic pain of my left side and they are going to do a CT scan next week to make sure there are no new tumors. The think it's just scar tissue from the operation, but even the possibility of a new tumor is so frightening. I suppose I have to get used to this - random CT scans to see if he cancer is back. But the waiting is almost unbearable. Even when the doctors tell you the chance is small, it's not small in your head, it's huge! takes up all the thinking space you had reserved for anything else like "not crashing your car on the way home from your doctor's appt.". Which I narrowly diverted BTW.

I've written about this before, but I will reiterate: living with this huge unknown in your life is like when you were little and waiting for the monster to pop out of your closet when you fall asleep. You know it's probably all in your mind, but just the possibility of monster poppage is enough to wrench your fear into overdrive. That's pretty much what I feel now and probably will until I get those CT scan results.

Pretty tired from the chemo yesterday, so I will sign off now.

Be good to yourselves.

Nearly Impossible Choices

I'm 4 months into my chemo (out of 6 total) and for the last few sessions I have met with my oncologist and we have discussed the same issue: Do we reduce the chemo dose? He claims that very few people can stand to do the entire 6 months at full dosage. Most reduce due to low blood cell count or side-effects.

My blood counts have all been fine except for one time and my liver functions and all that other stuff they test for have been fine, so for me it's just a matter of side-effects. So I'm faced with this dilemma: two more months of full dosage and feeling increasingly like a pile of poo run over by a truck and then put through a pulverizer or decrease in dosage. Is it worth two months of feeling bad to keep myself at full dosage or decrease the dose which may (or may not) give the cancer more of a chance to take hold, would make me feel a bit more human and may (or may not) decrease the chance of permanent damage from the side-effects.

The most frustrating thing for me is that my oncologist says that there are no studies to determine what happens if one decreases the dose. Namely, does the cancer come back more often if you decrease the dose? No one has done this study? It seems improbable. All you'd have to do is plus some survival rates into an algorithm and see if there's a difference. Hell, I've got nothing but time right now. Give me the data and I'll plug it in.

I try to make the best choices I can when it comes to this cancer. I see the best doctors, get second opinions, listen to my body but ultimately I'm left to make life or death choices on my own. Not that I'd have it any other way. I'm a bit of a control freak with stuff like this. But it's nearly impossible to make a choice that may leave me dead in 5 years or may give me another 60 years on this planet. Who knows? And I guess that's the problem: there really is no way of knowing. It's just my best guess.

Excuse me, do I know you?

Dear Everybody,

I've realized that there are people reading this blog who don't know me IRL. So who are you? What is your (or your friend/loved one's) diagnosis? Or are you just reading cancer blogs to feel better about not having cancer? If you are, I don't blame you. I read an article last week about a girl who was kidnapped at age 10 and forced to be a sex slave/soldier in Africa for 15 years, and I thought, "Wow. At least I only have cancer." So, no judgements here.

Also, let me know how you are making it work. I'm trying to stay positive and look toward a good prognosis. (Which may be hard to discern from my sarcastic writing style. I blame my grandfather - he gave me my sense of humor.) I'm meditating. There's a great set of mediation CD's by a Dr. named Martin Rossman called "Fighting Cancer From Within" that I got from Amazon. Also doing some Buddhist meditations. I like Tonglen a *lot*. I'm trying to laugh my way through the hard times. I'm re-reading Rachel Remen's books. I'm eating all the chocolate I want. And every now and again I have a really good, soul wrenching, cathartic cry. The kind where you sob and don't even make any noise and the tears just stream down your face. Sometimes that helps, too.

So post a comment or send an email. Let me know who's out there. We're all friends here. Or at least members of the same club.

Science!

I have had a few questions about my description of this blog, specifically as to what the "Law of Independent Assortment" means. Since, by day, I am a science teacher, I will do my best to explain.

When you are born, you get 2 copies of every gene. Genes are strings of DNA and you have 46 of these strings in every cell of your body. Each string has a pair - the one you got from mom pairs with the one you got from dad. These gene pairs will "code" (yes, you are a computer) for the same traits, for example hair color or foot length. So if mom was a redhead and dad a blond, you will have one gene that codes for red hair and another on that gene's pair that codes for blond hair. Or if mom was large-footed and dad a pee-wee you will have one set of code for large feet from mom and another set of code for small feet from dad. Usually, one gene wins and the other loses. That's nature, folks. So you end up be a blond like dad with no trace of red or a giant-footed wonder, just like mom.

Independent Assortment is what happens to our genes when we make nookie in a chevy and little Johnny boy steps out of the glimmer of his dad's eye and into the primordial goo of mom's uterus. When we make eggs or sperm, only ONE copy of each of those pairs makes it into the cell or sperm. It is a random choice. Little spindly fibers reach out and blindly grab one of each pair of genes to put in the egg or sperm. Mom's copy or Dad's copy. Doesn't matter. This is the Law of Independent Assortment. Our genes are "sorted" into eggs or sperm in a random manner, independent of any other forces. It makes sense - if we each gave all our genes, then the baby would have twice as many genes as we have. And their kids would have twice as many as them, and so on and so forth. Nature doesn't like this. Nature like the one copy from mom and one from dad paradigm. When this doesn't happen, miscarriages result.


"But, Megan," you may ask, "what does that fact that you have gorgeous red hair have to do with your cancer?" Excellent question, class. In addition to things we can see like hair color, our DNA and genes code everything in our body - internal structures, ("what a charming liver"), hormones, digestive enzymes, all the parts of our individual cells, etc... Our DNA is constantly making copies of itself for new cells. Your hair grows - new cells, you cut yourself and bleed - new blood cells. This is happening all over you body all the time. When your DNA copies itself for a new cell it goes very, very fast. Like a speedy typist, sometimes mistakes are made. One of the things that DNA codes for, in addition to hair color, is a small structure that acts like a spellchecker when the DNA is making copies.

So, here's where I tie in. Most people get two copies of that spellchecker, one from mom's gene's and one from dad's. I only got one from dad. Mom's was a dud copy that didn't have the right structure to spellcheck properly. (thanks for the cancer, mom!) This situation is called Lynch Syndrome or hnpcc. So, when and if my one good copy from dad takes a hit (from environmental mutagens, that bad steak I ate teeming with bacteria, or just chance) I am left with no spellchecker. And then my DNA starts to have all sorts of spelling mistakes, which (and I'm not sure exactly how this part works) turns it to a cancer cell. Or perhaps natural cancer cells in our body come to get rid of it since it's now a mutant cell. In any event, cancer cells cluster and, voila! A tumor.

I will spare you photos of the tumor. Although I may be willing to sell on eBay for the right price.

"You know what I want!"

There's a song on the Spinal Tap soundtrack called "Gimme Some Money!" (It was one of their early smash hits.) I kinda know what they were talking about.

When I was first diagnosed, one of my first thoughts was "how the hell am I going to pay for this?" I am only 35, live in one of the most beautiful yet expensive cities in the US (San Francisco), am independently employed (read - don't make much money) and am too young to have much of a savings or retirement account. I am lucky that I at least have health insurance. My surgical bills alone were over $80,000. I can't imagine going through this without health insurance or without help from my friends and family. Although, I would like to have some sort of law passed where all people who get cancer and have less than $5,000 in assets immediately get $100,000. Sounds fair, right? Oh well, we should probably cure world hunger first and stop the spread of HIV in Africa, but you know what I mean.

I think this is a particular problem for those of us that are young and facing cancer. Not that it's ever an easy financial burden, but when you are young, in addition to feeling like your life has somehow been stolen away, you are faced with this huge financial debt/burden right at the beginning of your adult life.

I'm not a big fan of amassing huge amounts of cash, but I understand better now why someone would want a nest egg. Because stuff like cancer happens.

Mitzvah

Yesterday I was waiting in my oncologist's office for my bi-weekly pre-chemo appointment when a serendipitous thing happened. I had a 10:15 appt. but, as usual, things were running about 20 min late. A man walked up to the counter and asked if he would be able to get out of the office by 11 am (he had a 10:30 appt.) to catch a bus back home to Sacramento ( About 2-3 hours from the hospital). He said the next bus wasn't for 5 hours. Yuck!

As soon as he sat down I asked if he'd like to switch appointment times with me. He enthusiastically said "yes!' and I went to the check-in nurse to tell her what I wanted to do.

I think this is one of those "gifts" from cancer. I most probably would have done the same thing pre-cancer, but I would have stopped to consider what I had to do that day, if it would make me late for other appointments, etc. Now, I don't even blink an eye. If I can help another sick person, it is a Mitzvah (for you non-jews out there, a Mitzvah is like a blessing - it's a covenant you make to do good in the world whenever you can). I think that compassion can only lead to a better world, and if I've gained compassion from this experience, then I am thankful for it.

One day someone I know will get cancer or AIDS or some other dreaded disease. I now know how to be a better Mitzvah for them.

Chemo is finally kicking my ass

I was told that the chemo effects are cumulative, that I would feel worse as the treatment progressed. But for some reason, I chose not to believe it. "I will be the one who feels just the same all the way through chemo." Well, I hereby evoke my right to be wrong.

Usually, I get one week of feeling crappy, then one week of feeling ok, then they dose me again. This time I pretty much felt crappy for the entire 2 weeks. It waned...today felt slightly less crappy than last week. But by last night (day 13 of my cycle) I was still chained to the couch, only able to get up and get myself the occasional glass of juice or gum.

It makes it really hard to get up and drive myself to chemo on Wednesdays knowing that I'm signing up for a worse 2 weeks than the last. My rational brain tells me that it's for my own good, it's potentially saving my life, etc. My hind brain screams "Noooooooooooooooooo! No Likey!" And I end up feeling like Olive Oyl being pulled upon by Popeye in one direction and Bluto in the other. (I'll leave it up too you, dear readers, to decide which part of my brain is Popeye and which Bluto.)

I just have to keep in mind that it's temporary. That, ultimately, this experience is going to light many fires under my ass. (Hey - no jokes about how my big ass can hold many fires! I was being metaphorical!) And that I am surrounded by many people who care a lot about me. That part is the best.

Do we get to choose?

I wonder if we get to choose, to some degree, the course of our cancer. I have been doing all sorts of additional types of medicines to the Western surgery and chemo combo since I was diagnosed. Acupuncture, massage, body talk and meditation both during and after chemo. As a caveat, I should mention that I'm from San Francisco and these things are a lot more standard here than they would be in other parts of the US.

So here's what I'm wondering - do my intentions, my choices, affect my outcome? So far the evidence says yes. It's difficult, if not impossible, to empirically prove (I'm a bioscience gal, so I know my variables, controls and placebos) that any of this additional treatments are doing anything, but along the way I have had small bits of proof that are making me believe more and more that intention, qi and whatever else I'm doing seems to positively affect my prognosis. For example, all of the measurable things that I was asked to envision in my "Preparing for Surgery" meditation actually happened. And according to all my surgeons, nurses and my oncologist I'm doing remarkably well with my treatments.

So, my question to you, the cancer community (and anyone else who may be reading this) is this: Do our intentions affect us on a cellular level? Can we meditate on making new blood cells and have it happen? Can we will away the cancer by asking, telling or shouting at it that we don't need it anymore? If our minds/brains are controlled to some degree by thoughts and thoughts signal our brains to send all sorts of cascading messengers to our cells, then why not? Maybe it's a practice we have to do daily. Like exercise - if you only go to the gym once a month nothing significant will change, but if you do several times a week, your body will respond.

So, let's all imagine this:

Your body is at its best. Your immune system is working like the well oiled machine that it should, finding cells that are no longer needed and destroying them while recycling the good parts for future use. Your heart is pumping way, happy in its task. It's delivering oxygen rich blood to our cells so they can make more energy to do all the tasks your cells need, while pumping away carbon dioxide and other toxins that our healthy body no longer has need for. All of your other organs are operating at peak health, doing their individual jobs to help make you a whole, complete, healthy and well-balanced body and mind.

Take that, cancer! Ha!

Cold hands, Warm heart

There is an expression "cold hands, warm heart" that my chronically cold-handed friend Matt used to say. I think this means that an icy exterior does not mean there isn't a kind person underneath. But since the oxaliplatin that I am taking has given me cold hands, I wonder what it has done to my heart?

I know that physiologically this stuff is horrible for my heart and there can be permanent damage, blah blah blah, but what does it mean for my metaphorical heart? Has the cancer, surgery and chemo made me a kinder person? In some ways, I think it has. I am more sensitive to people with a serious illness now - I know how to respond better to people telling me their bad news. I now know more clearly than ever that not I, nor anyone I know, will live forever and that makes my time on earth more precious.

In other ways it has made me meaner. I am more angry than ever at politicians and the stereotypical rich, white American. I wish I could have them all trade bodies with parent in India who is slowly watching their child die of starvation. I get mad at people for *not* being kinder. What kind of an oxymoron is that? I am mad at them for not seeing the light? That makes no sense. Maybe I'm just grumpy from feeling like ass for the last 9 months or maybe all that stuff about being universally kind is a crock.

There are so many kind people in my life that I just want to shower with happiness if I can. I know how good a heart can be. But since my diagnosis I am angrier than ever with the meanies. I used to think that an unkind person was just anxious or confused or hadn't grown into the wisdom that is kindness. But cancer has lowered my tolerance for this type of person.


Can it be that cancer has made my heart more unkind? Or is it that time seems short now and I don't have time for the selfish pricks of he world?

Life-size

When I was a kid there was a company that would make a life-size doll in your likeness if you sent them photos. It was very expensive and I don't actually know anyone that did it, but it got me thinking.

Sometimes I feel like there is a life-sized Megan walking around who has cancer. I suppose this could just be an extreme version of "this can't be happening" but I think it's more than that. My life changed so dramatically and so quickly that I just haven't had enough time to incorporate the new me into the old me. So the new me feels like a fake, a representation of what Megan was. The new Megan is sick, can't have children and will always be anxiously looking over her shoulder to see if Cancer is back. That's not me. I am healthy and optimistic and have spent much time and money trying to be *rid* of anxiety.

How does life-size Megan get incorporated into real Megan? Is it just a matter of time? Do I become life-size Megan and leave old Megan behind? I like old Megan. She was familiar and I love her for all her quirks. And yet, here I am, talking about myself in the third person like a king or schizophrenic. Ah well, I suppose my unconscious is working this all out. I just have to ride the wave and see where it takes me.

I am going to outlive my cat

When I was in my mid-twenties, I got my cat, Gatsby, as a kitten. He's 10 now. As a general rule, cats live about 10-15 years, then they die and you cry a lot. I had the thought today, "What if I don't outlive my cat?" When you get your first cat, you are supposed to outlive them. You are supposed to grieve, wait a bit, get another cat. Then repeat. Several times.

So, I decided that I am definitely going to outlive my cat. I am going to live long enough to outlive several cats. It will be sad, but at least I will be there.