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.