Flashbacks

Hello! I've been at a loss for what to write. The immediate misery of extreme treatment has given way to a slow, uneventful period of maintenance treatment.

I'm trying to decide whether to stay on Lupron, because the drug makes me completely miserable for one week per shot. I'm still struggling with this "new math". "Quality of life is important!" "Yeah, but not being dead is also important!" "But the side-effects might kill you anyway!" Etc etc.

I'm able to enjoy a pretty normal life, most of the time. I forget why my shirts don't fit quite right or why I suddenly feel so INCREDIBLY HOT*. And then I'll read a story about a woman who was coasting along for 9 years after treatment until a sudden brutal metastasis, and I'm back in that unbearably scary Cancerland, where things can go from normal to dreadful in the blink of an eye.

For the past week, I've had a cold. I've also been clutching a thermometer like it's my new best friend. Every single time I take my temperature, I've got no fever. So why do I do it?

A few months ago, something happened that was so scary I didn't want to write about it. I'm not good at admitting when I'm afraid, but my obsessive use of the thermometer does all the admitting for me, I think.

I'd had a pretty normal cold. It was finally fading, so I went on a fantastic hike with some friends. It was the kind of hike that made me feel strong and good and myself! Plus, I caught a snake, so, y'know, best day ever.

But that night, my cold returned with a vengeance. I had chills and I felt really awful. I let it go for a day or two, and then finally thought to take my temperature. 101 degrees. Huh. Could I be getting a flu right on the tail of my cold?

That was when I looked under my arm.

Where my skin was tight from so many surgeries, I had a growing itchy red spot. I'd had cellulitis before, but it was a slow-moving thing -- an infected cut that happened totally by chance, lingered for a week, and was easily knocked down with antibiotics.

But this time, likely because of an overly-tight backpack, I'd damaged the skin under my arm and somehow contracted Super Cellulitis.

I went to the ER. I felt worse and worse as the doctors tried (and failed) to draw blood -- I've always had stealth veins. I started off joking and laughing and ended lying on the blood draw bench. I got admitted. They gave me a bag of IV antibiotics. My fever went up and up.

Throughout all of this, my husband was by my side, going through all of the misery of hospitalization right there with me. Which is why I get angry with cancer, even though it's an abstract concept and doesn't take my calls.

By midnight, I was shaking and asked for a blanket. My fever had spiked to 104, and the nurses were looking worried. I heard them talking about whether to give me an x-ray of my lungs; instantly I imagined them discovering metastases in my lungs, and having my whole life change, and I responded in the only intelligent way I could: I threw up all over the entire room.

My husband woke up and fainted. It was very impressive. The nurses put him on a stretcher and carried him out. I asked the nurses if I should call my parents; they said "Wait a few hours," but then told me that my condition was "Serious." So I called my parents and told them that I loved them. "I've had a good life," I said. And then I lay back and waited to find out if I was going to make it.

The weirdest stuff passed through my mind. I wanted to keep the light on, because if this was the end, I wanted to see it. Does that even make sense? I lay there feeling so mad -- really, does a little cut do me in after all of this? I watched the sky turn from navy to turquoise and suddenly my fever was going down. The antibiotics were working. The lady in the next bed walked past me to get to the toilet and I looked at her face; we shared a really happy smile, even though we'd never spoken and she only understood Spanish. In my haze I interpreted it as "We're still alive in this terrible place."

They wheeled my husband back in, and I reached over and we held hands very tightly. I slept.

They kept me in the hospital for another few hours once I woke up, to give me more antibiotics. They finally sent me home with a fever of 101 -- but I was steadily getting cooler so I think they were happy with the trend.

I haven't wanted to write about this experience because it's not an especially happy story, and because I don't want to seem dramatic. I've heard much more terrible hospital stories. Really, I was in there for a night, and they fixed me up.

But argh, it's hard to adapt to a life after cancer. Fingers snap, and you're sick. Fingers snap, and you're okay. It's freaking exhausting. I'm not great at it, yet, which is why I clutch a thermometer when I have a cold. But it's also why, when a friend and I go out for coffee, I'm usually just grinning away and have pretty much no interest in making decisions like "what should we eat"? I'm alive! Hot dog.

Also, the Lupron makes it hard for me to remember stuff or focus. But let's just pretend I'm a master of inner peace.

*I think I'm going to start calling these "Hotflashbacks".

Still alive: the good and the bad (but mostly good)

It's been a long time! I'm finding it hard to put my day-to-day life into words. I'm still job-hunting - the hunt was delayed by a few health issues, though now I'm back at it with a vengeance. I'm still spending time with friends. I'm still hiking. I'm still in a strange limbo space.

I thought I'd write about some parts of the post-cancer experience:

The good: Have you ever really looked at your hands?
Not all of the life-appreciating bliss of cancer treatment has carried over into my current state, where I'm obsessively checking job sites, cleaning the house, grumbling at the lack of dish soap, and doing all kinds of mundane things I couldn't do before. While kind of sad, this also seems like a good sign that I'm finding what the cancer press calls "the new normal".

However, there are places where my focus narrows to the present moment and the mindfulness is definitely still present. Recently I heard a cancer patient say that she appreciates food so much more, and I realized that this is also true of me. Months of busted taste buds and nausea can really make a gal appreciate the subtleties of the blandest potato.

So, I get totally blissed-out by food. I drink really, really mild tea and my brain is pretty much transported to a forest full of jasmine. I also get blissed-out by sunny days, pretty flowers, a warm breeze... I always liked these things, but I get kind of overwhelmed by them in a new way. It's surprising and nice.

The bad: Recurring nightmares
So, uh. It's that thing we don't like talking about: the possible return of my cancer, which is called a recurrence. As much as I'm keeping busy and filling my life with good things, a part of me is basically waiting around to see if I make it. The first sign of recurrence is a physical pain or nausea or other symptom, which is a hypochondriac's nightmare. Local recurrence (breast recurrence) is bad; distant recurrence is fatal.

The hard part is that my body's still pretty beat up by treatment, so I'm more susceptible to random health problems. So far, I've had...

• a loss of hearing in one ear. Brain metastasis? No, just a random virus.
• knee pain, foot pain, shoulder pain. Bone mets? Nope, just my body desperately trying to get itself together.
• a terrible pain under my rib cage that is fortunately mostly gone. Liver metastasis? Nope, just my gallbladder acting up.
• redness, itching and pain at my surgery site. Inflammatory breast cancer recurrence? Nope, just a nasty infection that landed me in the hospital, a terrifying experience that I won't go into here.

And there have been so many more. You can see how this might get a little maddening. It doesn't get in my way most of the time, though typing all of this out has been hard.

The in-between: I kind of liked the old normal. Do I really need a new one?

Every day I wake up and I'm alive. I can't say how grateful I am. Some things are more frustrating to me, and other things have more weight. I love my friends so much and I'm so scatterbrained that I often forget to call. I have a hard time with my new body, though I love it so much when I'm hauling it up a steep slope and it's not tiring out.

Things are amazing. Things are sometimes bad, but the amazing parts generally cancel them out. I think it's this way for most people, and if this is my life, I'll freaking take it.

Employment, boredom and you

I'm waiting to hear back from a job, and it's making me antsy, so I thought I'd write about jobhunting and cancer.

One of the hardest parts of being a young cancer patient is that your employment status can be much less secure. I'm speaking broadly, of course; unemployment can hit people of all ages, and up until my diagnosis I was very lucky. But it's definitely a common and frustrating road block in the whole cancer-before-forty marathon.

I was diagnosed right after I finished a short-term internship which followed my MS degree. My MS was a huge life decision, and it was a big change in my overall plan. I was so excited to be heading toward what I hoped would be a lifetime (or at least a whole bunch) of fun and meaningful work.

My breast cancer diagnosis put the plan on hold. I didn't want to apply for jobs when I didn't know how I'd be able to handle treatment, which is notoriously changeable and hard to schedule around - surprise! You need extra surgery! Surprise blood clot! etc. So, for a year and a half I did nothing but survive. Now I'm healthy enough to start job hunting. And I'm hitting a few obstacles:

• I don't know if or when my cancer might recur. There's the big one. It makes me feel guilty, queasy and sometimes paralyzed.
• I'm still recovering, physically. My level of fatigue is unpredictable. Some days I'm racing; some days I'm exhausted. My brain is slowly returning to normal, but I'm not 100%.
• I'm still in treatment. I'm still getting lupron buttshots, taking tamoxifen, and getting zometa. I still get regular checkups and I still get mammograms.
• There's a 1.5 year gap in my resume. So far this hasn't been a big problem, but I worry somebody'll notice.

I know I'm so lucky to have made it this far; I'm grateful that I feel good and I can think about the future. Also, holy cats am I grateful that my husband can support us right now. But do I ever wish a nice part-time job hugging adorable animals would just fall into my frail post-treatment arms.

Calendar girl

Tiptoeing along

I've been trying to think of what to write for a while now, and I think the only solution is to just start typing.

It's now been a year since chemo ended. A year ago this week, I was between surgeries. Between surgeries #3 and #4 out of about 7, that is - but I was getting ready for the most devastating surgery. This year I'm planning on getting a tattoo on my mastectomy scar that says "brave", once the danger of skin metastasis has faded.

I'm feeling physically good. I've been busting my butt on the elliptical, and hiking long distances. I look healthy; I'm more than ten pounds up from chemo. I'm no longer sleeping all day.

Everything is so deceptively normal, in fact, that I've started beating myself up for not getting more work done, for not having more strength - and then I remember why. It's goofy, but nice. Luckily I have parents, a husband and a support group telling me to be gentle with myself. They say it takes two years to recover, and I'm only halfway there.

Every day that passes ups my survival odds. It's still so, so scary. This morning my husband got sad, all of a sudden, in a coffee shop - that's how it happens. I told him he was tough. He is.

Being married to this man is the coolest thing.

I've been thinking about the changes I've made since cancer; I've been patiently working on fixing up little parts of how I live. I clean the house all the time (I used to be insanely messy). I dress more comfortably and attractively, which sounds so shallow but it goes a long way toward feeling more at home in my new body. I feel so much more grounded when these little things are organized.

Anyway, I'm doing the best I can with the body I have, as it slowly heals and simultaneously dives into menopause at 31. Last weekend I tromped through the woods with some nature nuts looking for tiny butterflies, and I was totally in my element. Cancer was the farthest thing on my mind (trying to remember a million tiny field cues for eentsy butterflies was probably my main thought), and it felt good.

Surthrivorship

In a week or so, I'll be 31.

There were moments during treatment that I didn't believe I would live to see 31. But I will. I'm slowly shifting from living day-to-day to the terrifying, wonderful world of planning for the (immediate) future. Brains are neat.

I don't have much to say that's important, but I've got some new hiking boots and have been stomping around, reveling in botany ID, listening to birds, and generally enjoying being alive.

Heartbreak and tea

It's been a really awful week for many of my friends. Like, a shockingly awful week. People passing away, people getting sick, so many people that I'm actually having trouble keeping track of which friend I need to call. And most of it is because of cancer.

It's hard to move on with the recovery process when the very real pain of cancer is everywhere, slamming headlong into the lives of heretofore healthy people. I know that saying "It's not fair" is kind of ridiculous, but dammit, it's not remotely fair, and it makes me so angry and sad.

But there are some good things. I've got a second interview! MY SISTER IS GETTING MARRIED! I've taken friends out to enjoy the spring salamanders. My husband and I went on a date night tonight, and absolutely stuffed ourselves at a restaurant. I have people I care about, and I'm being a little more social than normal (though, let's face it, during treatment I set the bar pretty dang low).

Overall I've been happy, though these losses and illnesses keep reminding me how quickly things can go so terribly badly, and I'm scared.

Bad news can slow me down, and I'm learning to go with it. I'm measuring my days from tea to tea. My husband brings me green tea in the morning, and then I go out and drink some iced tea, or some herbal chai or hot mint tea. I breathe and do everything I can to relax. I let myself regroup, and helps so much.

This is kind of a disjointed entry because I'm not sure how to describe a mix of happiness, peace and laughter, mixed with absolute crap - but then, that's been my problem with this blog all along! Tomorrow is my 6-month checkup with my onco-nurse. Hopefully I'll get some drugs to combat these hot flashes that are currently bathing my body in ridiculously toasty waves.

Hot hot hot

Well, my abrupt descent into chemically induced menopause has hit a rough patch. My hot flashes have changed from an occasional, mildly adorable annoyance to an hours-long frustration.

As soon as the sun goes down, and until about 11am, my body switches from boiling hot to freezing cold every half hour or so. I'm having trouble sleeping. I feel dopey and zombie-like.

I don't want to tell my doctor about this because she'll take me off the Lupron. I like the (possibly goofy) feeling that by staying on it I'm protecting myself just a little bit more.

The wackiest thing is that the hot flashes don't mean an actual raise in body temperature. My husband's hand on my forehead is invariably hotter than I am, even when I'm convinced that the house is on fire. Once or twice I've actually had him verify that the apartment isn't so hot that the pets will keel over.

Cancer isn't cancer isn't cancer

One of the most surprising things I've learned over the past year and a half is that the phrase "having cancer" can mean so many different things.

I've met cancer patients who have a 100% chance of beating their cancer. I've met people who don't have long to live. I've met people who have relatively unknown cancers that will almost certainly kill them, but nobody knows when. And I've met so many folks in between.

This has been one of the weirdest parts of encountering other young cancer patients. We all want to make common, but everyone's treatments are so different; some of us will lose body parts and some won't, some will have no trouble with radiation and some will be permanently scarred, some will escape chemotherapy and some will have chemo sessions that last for a week. With breast cancer alone, I've met patients who are 100% curable and who are terminal, who lost two breasts or one or none. All of that considered, it's pretty remarkable that we do such a good job of supporting each other as much as we do, when we've had such different experiences.

I've found that cancers are like pokemon. There are a zillion kinds, they have dumb names and they've got incredibly varied attributes (and you can't catch them all? Er, nevermind).

While all this variety has made my own experience dizzying, it's also sharpened my ability to be media savvy. Every time I read about a famous person who announces that they have cancer, I know how many things that could mean. Cancer isn't cancer isn't cancer. Each person's experience is unique, even if there are (luckily) enough common threads so that we get to joke together, hug each other, and carry each other through.

I kinda wish my Pokemon wasn't pink, though.

We're too old, we're not old at all

This has been an eventful few weeks. I'm going to write about it very briefly so my OT doesn't get too mad that I'm typing.

We went on a honeymoon to the tropics, planned completely by my genius husband. It was unbelievable. We hiked in the rainforest, snorkeled over a crystal clear tropical reef, hunted frogs, and relaxed. I was trying to think of things I'd like to do before I die, and I feel like this trip checked off about six things from my list. Is it totally dumb to feel lucky after all of this? I feel so lucky. I have a lot to be grateful for.

Then I came home and had a job interview. I have no idea how it'll turn out, but it felt incredible to talk about my skills and imagine possibilities that have nothing to do with cancer. I was terrified -- this was a big step! After the interview was over, as the tension drained away and my husband and I were on our way home, I told him about the questions. When I got to the bit about them asking "Where do you see yourself in the next five years?", I burst into tears. Good thing that didn't happen in the interview.

I'm scared, but there's so much to explore, and there's so much coming up in the next few months. So I'm 90% hopeful and 10% terrified. Oh, and 10% cold virus, which I'm sure is making this post extra-loopy. So basically I'm excited, and absolutely dreadful at addition.

Bits from two of my favorite kids' books

My husband re-read some of my favorite books to me, and these parts stood out. If you haven't read any Moomintroll books, you should!

     They had to keep watch, so Moomintroll took the first and decided to take the Snork Maiden's, too, and while the others curled up tightly together and slept, he sat staring out over the desolate sea bottom. It was lit by the red glow of the comet, and shadows like black velvet lay across the sand.

Moomintroll thought how frightened the earth must be feeling with that great ball of fire coming nearer and nearer to her. Then he thought about how much he loved everything--the forest and the sea, the rain and the wind, the sunshine, the grass and the moss--and how impossible it would be to live without them all, and this made him feel very, very sad. But after a while he stopped worrying.

"Mamma will know what to do," he said to himself.

                        -Tove Jansson, Comet in Moominland

     Any sensible person could have told him that this was the very moment when the long spring was born.

But there didn't happen to be any sensible person on the shore, but only a confused Moomin crawling on all fours against the wind, in a totally wrong direction.

He crawled and crawled, and the snow bunged up his eyes and formed a little drift on his nose. Moomintroll became more and more convinced that this was a trick the winter had decided to play on him, with the intention of showing him simply that he couldn't stand it.

First it had taken him in by its beautiful curtain of slowly falling flakes, and then it threw all the beautiful snow in his face at the very moment he believed that he had started to like winter.

By and by Moomintroll became angry.

He straightened up and tried to shout at the gale. He hit out against the snow and also whimpered a little, as there was nobody to hear him.

Then he tired.

He turned his back to the blizzard and stopped fighting it.

Not until then did Moomintroll notice that the wind felt warm. It carried him along into the whirling snow, it made him feel light and almost like flying.

"I'm nothing but air and wind, I'm part of the blizzard," Moomintroll thought and let himself go. "It's almost like last summer. You first fight the waves, then you turn around and ride the surf, sailing along like a cork among the little rainbows of the foam, and land laughing and just a little frightened in the sand."

Moomintroll spred out his arms and flew.

"Frighten me if you can," he thought happily. "I'm wise to you now. You're no worse than anything else when one gets to know you. Now you won't be able to pull my leg any more."

                        -Tove Jansson, Moominland Midwinter

What chemotherapy was like: comedy edition

Hooray - a "s(*&%$ people say" video that I can relate to!

While I applaud the efforts of folks who try to make cancer treatment an inspirational and beautiful journey, I sometimes find it hard to listen to their words over the sound of the INCESSANT BEEPING.

Quick happy things

• I'm getting into volunteering, and planning to lead a field walk for young adult cancer patients when the flowers start popping up.
• Job stuff is progressing.
• Museum trips, dinners, games.
• Husband is interesting and fun x 1000.
• Puerto Rico in five days.
• I'm slowly, person by person as my energy allows, catching up on correspondence. Hey, glaciers are technically in motion.
• It's wonderful and terrifying to step back into the real world with my fragile post-cancer body.

Onward

Thanks to my week off for Zometa sickness and my super-limited allowed typing time, I've piled up enough unanswered correspondence (phone and email, mostly) so that I feel paralyzed by guilt, and respond by eating snacks and staring at walls rather than being productive. I don't get what it is about the brain that makes it think "I have too much to do, so I'm going to take swift action! Time to freeze up and be totally overwhelmed." Gah.

Anyway, here's what is up with me lately:

• Zometa was indescribably bad. I spent a few days barely able to move. I'm still waking up with back pain. Low side effect drug my butt.
• I'm seeing a physiotherapist for post-surgery care of my arms. The bad news is that my right arm isn't healing quickly enough. A probable culprit is the slow drainage of fluid from my elbow, because I have, y'know, zero lymph nodes in my armpit.
• This is frustrating. I'm not allowed to draw, and my left arm is having trouble picking up the slack. I miss my online friends (irc holla). I'm still not working and I'm having a hard time with this.
• Good news: I got my silicone external breast prosthesis, finally. And six gorgeous mastectomy bras to tuck it into, all courtesy my insurance. My f'boob (Hester) is comfortable. My clothes fit better, too.
• I went to three (!) social events on the weekend. I survived, I didn't pass out, and I was only a little tired. Man, do I know some good people.
• I'm feeling discouraged sometimes, but I'm also getting better at hauling myself out of discouraged moments. I go for walks, drink hot drinks, and relax more than I used to. I would pat myself on the back if I were allowed to bend my arms more than 90 degrees.

I'm in an awkward limbo. It's frustrating, but it's not horrible. I mean, there's horrible, and then there's Zometa horrible.

Like a phoenix rising from a pile of kleenex

I wound up having an unusually bad reaction to the Zometa. That was the most painful 48 hours I've had, surgeries and chemo included. The pain was too much for good old Oxycodone. Desperate to keep my tiny meals down, I even wound up downing my old nemesis, the anti-nausea drug Compazine.

But it's almost over! It's sunny and snowing, and my husband's a hero, and my pets are cuddly (well, maybe not the snake).

Zometa

Ughhhhhh.

It's 3am. My body is mounting a extremely faithful production of the Zometa side effects list. I feel like I have a nasty, painful flu.

This makes me think of all the nonsensical chemo posts I never made!

Hurggggggl.

My wings are purely vestigial

I'm typing this post slowly. I'm seeing a physiotherapist for post-surgery care, and she doesn't want me using my right arm AT ALL for a while -- and my left, just sparingly while we strengthen it up.

My Zometa infusion went fine. Hard to be in that infusion chair again, though.

I spent the weekend at a gigantic puzzle contest. It was so much fun. Good people, good puzzles. It seems that Lupron hasn't mucked with my cognition very much. Relieved!

I'm going mildly insane trying to think of things to do that don't involve my arms at all (no drawing, lifting things, video games, or semaphore). The longer I go without a job or a task to occupy my days, the harder it becomes (1.4 years and counting.... argh). I'm ready for this to be over; ready to get things done.

Let me know if you can think of something I could do, or if you're casting a video podcast about science, or want, say, a sexy model who always keeps her arms relaxed and straight for sexy and mysterious reasons.

Thanks for being patient while I don't answer emails. And thanks for writing anyway.

Recipe for the perfect bath

Red Velvet Chocolate Tea (in a mug, not in bath)

Sherlock

Oh, and hot water, of course.

Things aren't so bad. More later when I've done some more healing up.

Ouch

Surgery went well but recovery is slow. Pretty sore.

Rx: Drugs, naps, hot chocolate.