Gettin cooked

A quick update, since it's been a bit:

I'm skiing!! I did indeed forgo the bike til spring and procured a M-Th pass at Solitude. It has been splendid! Excellent early season skiing, as far as snow goes. It got a little too spring-ish for my taste last week but it's back on the up and up-- supposed to be storms through the weekend, I believe. I'm certainly not as strong as I used to be, but it's coming back slowly. Sean helped me put together a new ski set-up-- Barons on Gotamas-- they're gorgeous. For those who don't know, Gotamas are stiff Volkl skis, Barons are alpine-touring bindings, so I can ski in the backcountry. He also bought me skins for Christmas: a real sweetheart, if you ask me.
The skis are stiffer and wider underfoot so they're taking some getting used to. It's hard to charge and really use those skis like they're meant to be used when I'm starting out weaker than usual. But whatev, it'll just take longer than I'm used to. I've been skiing with Sean a couple times and he says he doesn't get what I'm complaining about-- I'm seem to be ripping harder than I was last year. Shame I don't feel as strong as I look. *shrug*
As silly as it sounds, considering I just got all of these new toys, I'm contemplating selling the whole set-up (skis, bindings, skins and AT boots) and buying a pair of custom-made boots instead. Since I broke my right foot a couple years ago and didn't go to the doctor, it has been a huge hindrance and I've just been doing my best to ski hard and suffer through the pain. I could also use the boot money to get surgery, rebreak the right foot or shave off the bone, and set the thing right again, but extra surgeries are not that appealing this year, to be honest.

Also, I have started radiation. Had my second treatment 3 hours ago, actually. So far so good, but it's still early on. So far the only side-effect I notice is mild nausea and headaches for a half hour after treatment, and a slight tightness in my chest. I haven't done any sort of running or hiking so I'm not sure how cardio is going to feel-- I'll keep you posted.
I decided to go ahead with radiation after Dr. Fischbach said all the physicians concurred that I should go through with radiation. I was hesitant after witnessing her initial hesitation toward recommending radiation, but she seemed 100% sure after reviewing my pathology with other docs. Even though I'm young, they thought I should go ahead with it because 1) the size of the tumor, 3-4 cms; 2) being HR2 positive; 3) having lymph node positive cancer, and; 4) they found cancerous tissue pushing out of the lymph node capsule into healthy surrounding tissue, which is apparently a very scary situation. I also asked for raw numbers during a second consultation and she said that if I do nothing, I have a 30-35% chance of a local recurrence happening all on its own. She also said I have a 1 in 1,000- 1 in 10,000 chance of getting cancer due to radiation, according to some statistic she seemingly pulled out of her ass. Even if her estimation is off, it's probably not as likely as 30%, so into the cooker I go.
It's unfortunate and sad and I still have worries about getting leukemia, throat, thyroid or lung cancer, and I'm concerned how radiation is going to effect my pec and deltoid, but I guess that's just how it goes. I'll focus on warmer, more enlightening things, like friends, family, school, exercise and books-- the loves of my life.

I am so, so excited for Christmas! Sean heard on NPR that homemade gifts are more the rage this year than they have been in decades-- one of the few perks of recession, I think. I went a similar direction out of necessity, kinda hard to afford Christmas on a disability budget. I'll be going down to Oak City to have Christmas with Dad, Kota and all the sibs. I absolutely love his home and the way it feels-- I couldn't ask for a better Christmas location. Also, I'm really digging that Rock Band is a burgeoning family tradition of ours. I'm not good enough on any of the instruments yet so mostly I sing, but it's so fun to have all of us doing something like that together. Hopefully it snows so we can go sledding on the sand dunes and I can watch my dad explode into a berm at high speeds...so damn funny...

I think I'm going to be back to working again soon, which is just fine by me. The job market didn't seem to get any better during the 8 months I've been watching it. Hopefully I can find something working with teens again; I really miss it. I don't particularly miss being away from friends, family, routine exercise, social events and all things normal about life for 8 days at a time like I was doing at Second Nature, but I'll take what I can find. Knowing my luck, they probably don't need anyone right now anyway.

I'm going to ski, strengthen, read, job-search, drink hot drinks like it's my job, and try my hardest to avoid egg nog for the next month. And celebrate my birthday somewhere in there. My o my, what a strange way to spend year 24. Let's hope year 25 has better things in store!!

Love all of you and wish you the best during these beautiful holidays! Spend it with those you love.

In Your Dreams

Damn. There I go, counting my chickens before they hatch, again.

This was the plan:

Do radiation, or not-- the rest of the plan was the main focus anyway. For the next 3-4 months, rebuild my body to resemble former self. I was going to achieve this by mostly strength training with little cardio (I want to have my muscles back but can't lose much fat from my abdomen as it is needed to make a left breast mound in reconstruction), getting back to my high-fiber, high-iron veggieful diet to assist in rebuilding my white blood cell count, and skiing my ass off as I very well should.
I figured that with a little luck, I could be ready for reconstructive surgery by late January (I was planning on recovering levels faster than their projections as has been my usual throughout treatment) and be all healed up and ready for a normal summer job, something that got me back into my passions and had a splash of adventure to it, like going back to guiding, maybe going to Alaska to work for GOAK or doing an internship in Ecuador, or something. I had also been fantasizing for months about being able to kick my own ass going through the Insanity Challenge and become the most fit I've ever been and be in my physical prime at age 25. Then back to school in the fall-- YEAH!!

Oh how I loved that plan. Too bad.

This is the reality:

Radiation is still completely up in the air. Because of my age, my radiologist was reluctant to give a solid suggestion either for or against. There is always a chance of a second, localized occurrence, meaning I would get cancer again in my left breast tissue or the like, underneath my newly reconstructed breast. That could happen at any point in my life and is the reason why I would undergo radiation in the first place, in the hopes of preventing it. I am at higher risk for a second occurrence because I am HER2 positive (most aggressive form of breast cancer I could have), as well as estrogen and progesterone receptor positive, and I had node-positive cancer (even though I was only positive in 2 out of 21 lymph nodes, it stills ups the ante), and one of my nodes had mutated a little bit, changing shape and extending out into the surrounding tissue, which is apparently not a good thing.
Radiation can also cause cancer, thyroid or throat cancer being most likely because of the area they will be radiating, but it could come back as any kind of cancer as the cells gradually mutate over time. Normally, people who develop a second malignancy (radiation induced cancer) develop it 20-30 years down the road. This is why, when it comes to a patient in their 60's or 70's, radiation is much more readily suggested-- in 20-30 years, this person may not care so much about getting cancer again. But for me, that would place me in my 40's-50's, yet again battling cancer.
There is a breast conference of some sort going on for physicians in SLC right now. My radiologist is going to present my case before a board there and gather multiple opinions. This was excellent news! Not only do I get a second opinion, but a third, fourth and so on from some of the leading physicians in the country, all free!! That part, at least, is awesome.

Radiation aside, reconstruction does not quite look like what I thought it would. Dr. Chen thinks I may be ready for reconstruction in late January, provided I don't go through radiation. She also told me that, no, I would not be doing reconstruction in one surgery, but possibly several. First, I would do the tummy-tuck and creation of the left breast mound. This surgery will take 6 hours. It also does not include any work on the right breast. This was news to me. Although it had never been discussed, I assumed that I would get the left breast rebuilt and the right one lifted and reshaped all in one surgery. While this is possible, it's highly dangerous because the right breast work will take a couple of hours and potential complications with circulation are a big deal.
She has to cut through blood vessels on my tummy and sew them into blood vessels in my left breast area. If, for whatever reason, the tissue does not take and receive adequate blood supply after the surgery, the tissue will die. She will cut off all of the work she just did, leaving me flat chested and flat stomached, I'll recover for a few months, and then we'll reformulate a plan from there. Options for reconstructing a breast at that point would include taking a skin flap from the flank of my ass or my back, over one of my latisimus dorsi. All of these quite unpleasant and frightening outcomes are the reason she is reluctant to tack on that extra two hours during the surgery-- it allows that much more time for something to go wrong.

Directly after the surgery, I will stay in the hospital for three days so that she can monitor my circulation, looking for contusion or necrosis (I cannot explain how effing terrifying it is to imagine a half-moon shaped section of skin on my new breast growing grey and dying before my eyes). I will have three drains after this surgery, one out of the side of the breast like before and two out of an area of my selection for the abdominal incision. I can have the drains come out on the sides of the incision on my hips, but that could pucker the ends of my hip-to-hip scar and make them look like little dog ears, or I could have them come out of the pubic mound. She says most women go with the pubic area because you can easily hide the vampire-bite-like scars with pubic hair. Not too sure I'm into that.
The right breast won't come into play until at least 3 months after the first reconstructive surgery, when all of the swelling and settling has finished with the left breast. She will then lift and shape the right to match the left. And, again, I'll have 1-2 more drains coming out of the right side for another 2-6 weeks. Then, when the right side is all healed up (another 3 months), she'll create a nipple for the left side to match where the right has settled. I also have the option of having the created nipple tattooed to match the areola of the right side, but I don't know if I want that yet. Depending on how the left ends up looking, I was just going to cover the whole damn thing with a huge tattoo...so....yeah....we'll see. Btw, this is not the tattoo I want, it's just to give you an idea.


I'm frustrated with myself for making plans that I'm now having a hard time letting go of. It's my own fault, really-- that's what I get for assuming. Oddly, I'm not upset about the prospect of getting another 3 surgeries, making it 7 major surgeries in the span of a year. I'm sad about not being able to get back into shape and prove to myself that I can still be as strong as I ever was, if not stronger.
It's been difficult for me to watch as my body becomes softer and softer, wider and doughier. I know that I'm still stronger than most women who work out regularly. I know that, even if I worked out steadily for 3 weeks, I could still ski, row, climb and hike at almost the capacity I was managing pre-cancer. And yet, I do not feel as strong as I used to. I feel like a patient.
Being a patient brings on feels of obligation, disappointment, uncertainty, anxiety, apathy, frustration and sadness, and I'm slowly becoming tired of it. I miss feeling like me: strong, confident, funny, intelligent, beautiful and, in some ways, unstoppable. I still believe I am all those things (except perhaps unstoppable considering I'm quite thoroughly on pause), but there are some days that I just don't feel it like I used to, you know? That's the worst part about being a patient: losing my sense of identity in the wash of it all.

However, I have gained more than I've lost as far as beliefs about myself go. I am happy with how I've handled diagnosis and treatment, I've tried hard to stay level-headed and objective (as weird as that is) and I think I've done well with that. I'm also happy with what I've been able to do for others just by doing for myself; I'm not sure if people are just being nice when they say that I inspire them, but it seems sincere in most cases and the cases are many. Overall, I think that given what I was given, I've done far more than I could have done with it and I've taken care of my Pilsbury little self and kept quite happy through surrounding myself with friends, continually learning new skills or honing old ones, and exercising when and how I could.

But it doesn't feel like enough. I want to be free.


Blah....I just read over all I have written and I'm somewhat disappointed with myself. I wanted to not complain about my situation, as much as I could muster-- I often don't like when people do that. I only just came back from my doctor's appointment, so it makes sense that I'd be stewing about the insignificant....but it felt more than momentary, that's why I thought it deserved to be written. The truth of it is, I'm still a lucky, happy little duck with so many great things going for me: I'm just readjusting my plans.

On a much, much more inspiring note: it just snowed 8 inches at Alta with another 2-4 expected by Wednesday evening. I also have a Solitude pass, just Tuesdays so far but I have big plans of adding days. I just sold my car to Sean and had originally planned to hack off a huge chunk of a bill, then buy a bicycle so I can still get around. Now I'm thinking, forget the bike til spring and spend that extra on Monday, Wednesday and Thursday at Solitude. I mean, they open on Friday, and I do so love near-instant gratification.... :D

Hope you are all enjoying the weather, if you're lucky enough to have it.
Love.

Sometimes, there's just no way to hold back the river

A somewhat bedraggled, possibly intoxicated woman sat across from me on the bus the other day. She asked me why I was bald. I replied, "I have breast cancer." And she said, "Oh, I'm sorry."

I wanted to say, "Why? It has nothing to do with you," or "Thanks," or "What a strange thing to say." I wanted to say that I see hundreds of people everyday seemingly living their lives numb, rarely seeing each day as the remarkable opportunity it is-- an opportunity to experience life with richness and passion. I wanted to say that since diagnosis, every symptom-free moment I experience is a delight, every day that I can walk or run or laugh or sing is a truly amazing gift that brings light to my eyes. I wanted to tell her how when I go into the mountains now, I see beauty, feel ambition and smell freedom-- I'm overwhelmed by my own fortune. I wanted to say that because of cancer I am happier, fuller, more aware and more alive than I have ever been, and that she can save her sorry for someone who needs it.

Instead, I said, "Don't worry about it," smiled and looked out the window.



My last treatment was as close to fun as chemo can be. Sean had to work so I went in all on my lonesome. I wore a long hot pink wig, a sassy short skirt and 5-inch black heels that resounded confidence from the cold, clean linoleum to the sterile, beige walls. I smiled big and bright to everyone I saw, although that was nothing out of the usual. Even though I was being pumped full of room temperature liquid, I felt warm and happy. When I was done, I sashayed to the end of the rows of chairs, up to the bell and rang it long and triumphant, signaling that this was, in fact, my last treatment. Nurses and patients alike cheered and applauded, waving in my direction as I walked out happy as could be.

Life since has been just as satisfying. I went out that evening to Poplar and Oh Shucks to enjoy a 36 oz schooner or two. Nothing big, just a nice hurrah! with close friends; the pink wig came along for the ride. It's quite enjoyable to watch how people look at you when you wear such an audacious wig: expressions ranged from admiring to annoyed, curious to contemptuous, attracted to apathetic. Funny how such a simple thing can provoke so much judgment.
No other folderol has occurred on by behalf, although that's not to say none will. I would still like to hold a fundraiser at some point, but who really knows? I'm awful at putting such things together for myself, it just seems bizarrely self-promoting and desperate.

I have, however, been getting out and about as much as possible in celebration of my burgeoning health. I attended a wonderful No Pants Party held by my friend Katie to celebrate her moving into her new home. I saw just about every friend from my college days who still lives in SLC and received congratulations from all. It had been a while since I'd been Designated Driver and I thoroughly enjoyed it. I laughed my ass off at Sean's roommate playing Wii Boxing dressed as a Chippendale in naught but boxer briefs and a bowtie, and the numerous keg stands in knickers. It was so good to see everyone again, especially the weekend after kicking chemo to the curb. Couldn't have asked for better timing, really.

We had our first major snow storm of the season on October 24th and 25th. It snowed over 2 feet in 2 days at Alta and had all of the powderhounds going nuts. I wasn't feeling up to hiking up Collins and getting first tracks on Baldy shoulder just yet, but I wasn't about to let a beautiful storm such as this slip by without my noticing. So I decided to take a nice solo hike up Bells Canyon.
I had never been up Bells, just looked into it from the reservoir, and it was the epitome of beauty covered in fresh snow. I started the hike late in the day and only had 3 hours or so to meander around and explore trails to my hearts content, but I feel I saw a lot of the canyon. I got up to the middle tower before the tracks in the snow ahead of me disappeared: it would seem that the person setting the boot pack up until then had chosen that moment to turn around. I continued on for an hour or so, taking my time and lots of pictures, deeply breathing in that crisp mountain air I so cherish. It felt freeing and almost as though I was accomplishing something-- the culmination of all my trials leading to a moment of astounding perfection and power, I suppose. I can't really describe in any way that would give it justice, but suffice it to say that on that day, during that particular hike, I felt the strongest, luckiest and most content with my life than I had in months, and my oh my did it feel good.

The hike reminded me of this quote from The River Why by David James Duncan:

"And so I learned what solitude really was. It was raw material-- awesome, malleable, older than men or worlds or water. And it was merciless-- for it let a man become precisely what he alone made of himself. One needed either wisdom or tree-bark insensitivity to confront such a fearsome freedom. "


I also went up to the Goldminer's Daughter a couple nights and enjoyed the quality company of Carle, TJ and the slow trickle of returning characters. My latest evening there, I had the pleasure of seeing Y'Olde Burns, Carle, Rigoberto, Liz Page, McEwen, Teej, Rex, Trainer and Licorice!! I mean, good God!, could it get any better? Yes it can. They'll all be back soon, all my beloved besties from my days of living at Alta, each one with a special place in my heart.
I really am lucky to have a place (let alone a breathtaking ski lodge located at the base of a world-renowned ski resort) that I can visit and feel right at home. I don't think a lot of people have that and I appreciate every moment of it.
The morning after one of my evenings there, Carle, Burns, TJ, Rex and I went down to Library Square to attend the live broadcasting of the Rally for Sanity And/Or Fear in DC. It was lots of laughs and I had a great time wandering about looking at people's costumes and clever signs. Well, honestly, some of them weren't that clever, but they were a joy anyway.

While at the rally, I got a call from Sean inviting me to go down to the Diamond Fork hot springs with he and Jeff Story, and I gladly accepted. It started to rain as we were driving through Provo, but that didn't really matter to any of us. In my opinion, camping in adverse weather is almost better when it comes to popular sites like the springs; I have more than enough gear for anything short of a hurricane and it tends to weed out folks who I don't want to be sitting naked in a pool with anyway. People who shoot off firecrackers in the middle of the night, break beer bottles against rocks because they think it's funny, litter into the stream or at the campsites, break branches off the trees to use as firewood, or leave your nasty cigarette butts floating in the water. Straight to hell with all of you people.
Anyway, we had a wonderful day/evening there. Because it was the Saturday before Halloween, it wasn't very busy. I'm sure the weather played a factor, but it seemed as though most folks had somewhere else to be, leaving the upper springs to the three of us. We set up our tents before heading up, then relaxed in the pools for a couple hours, enjoying the feel of the cool raindrops splashing off of our heads and running down our necks as we sat in the luxuriously warm water. We went back down to eat dinner, then Story and Sean went up for an evening dip as I turned in early. I'm still quite anemic, my levels being their lowest, and sleep continues to play a leading role in my life.
I love waking up in a tent, it's such a wonderful pastime, especially in my lovely Mountain 25 after living in it for a summer. Every night I've spent in it since has been reminiscent of Alaskan summer evenings, struggling to fall asleep in the 2 AM sunshine inside of my little yellow lantern of a home. Ah, memories...

I find out about radiation this Friday and everything else will fall into place after that, including recovery times, projected time for reconstruction, etc. I can't wait!! For now, I'll keep going in for Herceptin every three weeks and building my cell levels through diet, exercise and rest. Not a bad plan. :)

And now for the good news...

It has recently come to my attention that way more people read this than I had previously believed. I have been somewhat negligent of my online writing duties because 1) it feels somewhat like I talking to myself at great length, and 2) it doesn't deliver the same form of satisfaction writing in a journal does. Due to a recent read, I've been thinking a lot about striving to make the majority of my leisurely experiences rich and full-sensory rather than opting for the bi-sensory experience computers and televisions offer. Mildly tactile because of typing and using a mouse, but really, blogging is almost solely auditory and visual. But journaling-- oh sweet, sexy journaling-- has texture, heft, smell, cramping, the experiential ambiance of an environment of my choosing, and it results in the gift of a tangible creation or memory.

However, excuses aside, I'm not doing as well at keeping people informed as I could. I'll try to remedy that.


Things are moving right along for me. I have my FINAL chemotherapy treatment on Wednesday, October 20th. WOOOOOHOOOOO!!!!! I'm so, so excited to be done with the nasty stuff. True, I do have to continue going in for Herceptin infusions every 3 weeks for a year after this, but that medication doesn't have any side effects and won't hinder my life anywhere near how chemo has. I'm happy to be finishing in October-- it's my favorite month. It's also convenient timing to start growing hair again as my ears are starting to chill quite easily.

I am beginning to feel the slow, creeping accumulative effect of chemotherapy. I've been anemic consistently my past 5 weeks, my RBC count somehow lower than even my WBC, making fatigue a prevalent part of life. Sidenote: I think I should mention exactly what "prevalent" means to me since I've noticed that others' interpretations of my energy levels are so incredibly relative to individual lifestyle. When I'm fatigued, I can still go for a 4 mile walk. I can still hang out with friends or hike to watch sunsets in the mountains (rock climbing at Maybird, left; hiking Dog Lake trail, below). I still shower, cook my own meals, clean my room and do my laundry. It's not debilitating, it's just a constant nuisance.

Taxol has been true to its reputation. It takes 3 hrs to administer on its own, add on the pre-drugs and saline and it comes to right around 5 hrs of hanging out in a chair at the good ol' Utah Cancer Specialists every other Wednesday. Despite my most sincere hopes, I did and do experience bone pain because of Taxol, but it's not so hard to live through. It also works like clockwork, which has been nice for planning social get-togethers and such.
I go in for treatment and feel no changes that evening and the next day. Then, for the next 4 days my jaw, knees, ankles, pelvis, spine and ribs feel all sorts of wrong. The best way to describe the sensation is an ache, but that doesn't quite do it justice. The bones being effected feel deeply sore, but it also kind of tickles in a grotesque, warped kind of way, especially when it feels as though my bones are "breathing," like they're flexing and expanding as my muscles do. I couldn't walk for an hour one day because my metatarsals felt as though they were spreading apart from one another similar to how you would spread your fingers, then contracting back, then back out again. Excruciatingly weird and uncomfortable. I wouldn't say painful, necessarily, but oh so unsettling.
I've also been experiencing the distal neuropathy they warned me about. I struggled with my hands quite a bit two weeks ago, slicing fingers while trying to cut vegetables or closing them in doors, but it's gotten better. My feet and ankles are pretty much always numb to some degree, often as high as my shin. It feels as though I'm walking on big bags of sand; certainly makes grace harder to achieve.

The neuropathy is on and off but not extreme and the bone pain lasts only the 4 days. So really, just 8 days of discomfort a month and a persistent inkling to nap-- that's better than most 9 to 5ers have it. I was fitfully excited about being able to go on long walks as I used to again. My wandering peregrinations are essential to my sanity, it's how I weed out trivial, bias or petty thoughts and rearrange my perspective. I was starting to get weird without them. It's also great to be able to exercise somewhat more regularly. I have to be careful not to lose much fat so that Dr. Chen has enough to take from my stomach to make a breast mound eventually, but just having energy and desire to hike and go out more is lovely.

I'm so pleased that I've had as easy of a ride as I have; I am an exceptionally lucky person.
At UCS I've met people whose finger and toenails have turned black and fallen off, folks with thrush and horrifically painful mouth sores that make even drinking liquids painful, some who can't muster up energy to get out of bed more than a few times a week, a few totally devastated by the embarrassment of having to face the world stripped of all hair, those who are terminally ill, and-- perhaps saddest of all-- people who seemingly have no one who cares about them. I have gone through this not having to experience any of those things and for that I am profoundly grateful: it could always be worse.

I'm also delighted and thankful for all of the fun and wonderful things I've gotten to do while going through "this dark time of my life" (a bishop said that to me and made me laugh out loud). Last month my friend Scott (pictured right, watching people swim Brown Betty with me) invited me on a 5-day private Cataract Canyon trip. I was ecstatic! I had never done Cat, but finances are tight for an unemployed weight on the state. After a pinch of fence-sitting and a dash of hemming and hawing, I agreed and set off with Mike and Sean down to Moab. The trip was wonderful-- 14 colorful, fun-loving, outdoorsy people who love rivers, hiking, good food and beach games. What more could you want?
I did have a rather eye-opening run through Rapid 15, though. Predictably, I'm not as strong as I used to be. But I wasn't going to let that deter me from rowing at least a little bit of fun.
I felt confident in my line, running it through my head while I was walking back to my boat from the scout. I was wondering whether or not anything would go wrong; I had rowed for a little while before the rapid and could already feel it in my left shoulder. I pushed out with Mike and Sean along for the ride, and moved to put myself in the water I wanted to be in.

There were little sleepers hiding along my pathway, normally no big deal, but I expended energy and time avoiding them so that when I went to push like mad to make sure I would make the line, I realized it wasn't going to happen, that, in fact, nothing I had planned was happening and I was about to get sucked behind a large boulder and into God knows where. So I kind of...just...flailed. I remember some pulling, though I can't remember what I was trying to achieve, I think there were a few squirrely pushes in there somewhere too-- all of it ultimately led me directly into the only enormous rock in the rapid, the one sticking 15 ft out of the water just before the hole, and spanked it with my stern, spinning me backwards down into the hole and through the rest of the rapid.
No big deal, it went fine enough and provided hearty laughs, but I definitely felt a twinge of embarrassment. I was also astonished to see, in practice, just how much I had weakened since the Grand in March. I hadn't done any upper body workouts at all since the Grand and it was sad to see and feel the difference. I had to actively remind myself to be lenient, to forgive myself for not satisfying my usual physical demands, and accept that things have happening to me that are out of my control. Not the easiest to do for someone like me-- rapids is one of the few things I'm uptight about, I think it's a stubbornness thing. I get upset if I don't have the run I intended and bizarrely, having a legitimate excuse for falling short didn't make me feel any better about it, it just made accepting failure easier.
However, a later realization made me swell with happiness and pride making the amateur hour run frivolous news: I went down the Grand and Cataract Canyons with breast cancer. Not bad.

I also got to travel to Colorado with Sean back when he first got back from Alaska. We went to see String Cheese Incident at Red Rocks, a much-needed dance fest that revitalized my soul. We stopped by Fort Collins and said hi to Eric Rubenstal, a dear old friend from days of yore. Had fun walking around town and drinking full percentage beer. We also had an epic accidental off-roading experience after following the grossly bad advice of Sean's GPS to try to find a "shortcut" to Crested Butte. We got oh so close, but then had to turn around as my car was slowly slipping down a hillside toward a stream, but not before we spent a gorgeous evening camped in a granite ravine next to a beautiful waterfall.
I get out to hike or go for mellow, mountain strolls fairly frequently, though not as often as I would like to with all the free time I have on my hands. I have gone up to the Goldminer's Daughter Lodge (the lodge I used to live in at Alta) to spend evenings cooking, playing games, watching tosh tv and shootin the shit with TJ and Carle. TJ's an early riser and a coffee drinker--makes for wonderful brisk morning walks along the rope-tow, breathing in the crisp, fresh mountain air, chatting about fly fishing and Montana, all the while sipping hot melted happiness. Other favorites include strolling alongside Carle, TJ and the legendary Eric Burns in Albion, enjoying the wildflowers in full bloom or giggling at chaotic large-family hiking efforts up at Cecret Lake. I absolutely love it up there, summer or winter, it's such an inspiring atmosphere.

All things considered, great summer!-- helping friends move, the Farmer's Market, Twilight Concert Series, sunsets, sunsets, sunsets. Went down to Oak City to visit dad and the kids and hiked up in Oak Creek Canyon, watched 7 puppies be born during that visit (ew), sang karaoke and watched my dad drop it low for the very first time in my life. I've been really happy.
I still have quite a bit to look forward to. I find out next week whether or not I'll be doing radiation, if so, it'll be a couple more months of suckage, but if not then I have the whole ski season to myself to rebuild my blood cell levels so that I can have reconstructive surgery. Yay for next steps!!!

I'll leave you with this lovely shot of a particularly breathtaking view of clouds over the Wasatch painted ocher by the setting sun. Hope you are all smiling freely and honestly. It is such a grand feeling.

The Daily Grind

It has been a long time, hasn't it? Lots to catch up on, I suppose. Yes...lots indeed.

First off: I have indeed started chemo. I go in for my 4th and final A/C (adiamycin/cytoxan) treatment on Tuesday, then for my last four treatments, I will switch to taxol and herceptin. For the most part, I have been doing fantastically well as far as cancer treatment goes.
I go in, have all my stats checked, and get my port accessed. That looks like being thumb-tacked in the chest with a 1-inch needle. Turns out my port is rather aesthetically pleasing, you can barely notice it's there, whereas some ports look exactly as though the person has a cat's eye marble under their skin. However, that means mine is deep and can be somewhat hard to access. It's really no big deal, I just have some uncomfortable multi-poke sessions sometimes.
After I'm accessed, I wait for a short period, then get set up in an armchair to begin treatment. Each drug is administered one at a time, starting with a little bit of saline and my two anti-nausea meds. Then I take each of the nastier drugs. The whole injection process takes about 2 hours. I feel slightly odd as everything is going in, sometimes I get headaches-- and I taste it immediately. Mostly, things just taste like metal, exactly as putting a handful of coins in your mouth would. Or perhaps like licking a chain link fence, that might be similar as well. That taste lingers in my mouth subtlety for five days or so, sometimes more. It sure makes wanting to eat food a real trick.

Food has been my most consistent struggle. Those few days afterward, food is the last thing I want. I haven't thrown up once due to treatment, or come anywhere close to it, but in the midst of those few days, even the idea of chewing something makes my stomach turn over. I get really sensitive to smells for a while, too. Not so much the way things actually smell, just the way I perceive them-- my senses get all messed up and things smell and taste differently than they truly do.
I smelled Sean after a particularly sweaty bike ride one day and even though I knew that he probably smelled sour and ripe in reality, he smelled deeply sweet, like fresh-cut peaches to me. Unfortunately, delicious wonderful foods like my grandma's cooking sometimes smell like feet, metal or sewage to me as well. It's a strange game.
The only way I've found to consistently replace any sense of appetite is somewhat, ahem, illegal. It's a beloved pastime and now, a means of maintaining my health. I tried on my second treatment to manage my intake of food without it and lost 13 lbs in 3 days. I could not force myself to eat-- that soul-sapping inability is almost impossible to convey to a person not in treatment. So I'll just run with self-medicating. I'd so much rather be shady than starving, and that's all I'm going to say about that.

I've been somewhat disappointed at the foods my body craves most, as well, only because I wish I was craving healthier things. Before diagnosis, I ate mostly vegetables, fruits and whole grains, made a point to know where my food was coming from and chose organic, high fiber, low saturated fat, and almost no synthetic sugars or salts.
Now, the things I crave most are sugars and fats because they are the things that taste like themselves. Fruit, candy, juice, pizza and even french fries almost always sound good to me and it makes me sad. Spinach, romaine, artichokes, zucchini, green beans, red lettuce, bok choi-- all things I LOVE that now taste like metal. Generally speaking, the more mineral rich a food is, the more it tastes like metal. As a new parlor trick, I can also now tell you how hard or soft your water is. Meat is back and forth, but I don't really like to eat meat anyway. I don't want the little food I am able to eat to be unhealthy and I try hard to make sure it's not. It's just a difficult transition to live with: I was proud of my eating habits and food knowledge, it's a big deal to me, but now it's as if I'm a new person with a new palette and I don't like it. *sigh* Oh well, it'll come back eventually.

My latest treatment was the hardest because I went into it a tad out of sorts. I had just spent the weekend at Misty's apartment in Bountiful house and cat-sitting. I'm allergic to cats, but I can usually hack it just fine. However, three days in a cat's domain worked me over. I was coughing, sneezing and bitching, having trouble seeing through watery and swollen eyes-- then went into treatment. My cough progressed into a deep, throaty pulmonary virus and I had my first fever. I am supposed to report any temperature of 100.4 or higher (that's considered a big-deal fever for a cancer patient) and mostly likely, start my antibiotics. Luckily, I rode the cusp of 100.4 then went back down again so I narrowly avoided taking those nasty antibiotics.

I've been weird about medications. I always am. I hate taking medication. My first treatment, I refused to take my dextramethisone (key anti-nausea med) because I didn't want to take a steroid anymore than I have to. My second treatment, I refused dex and Emend, my other anti-nausea med. The way I figured it, I may be sicker and have a harder time with my stomach, but at least I wouldn't have to endure the slew of side effects my disgusting cancer meds bring on. Turns out, I am lucky and don't get nauseous like most people do so I don't need the medication anyway, but I was appalled at the landslide of skepticism and nay-saying I got from my doc and nurses.
They thought I was being stupid and stubborn and didn't support me. I thought that was rather harsh. I understand their perspective, not wanting to deal with me if it turns out I can't eat for days and have to come in for saline or a blood transfusion, or have to skip a treatment because my counts aren't high enough due to malnutrition-- but to tell a patient she's being stupid because she wanted to test her strength and protect herself from unwanted side-effects? That's unprofessional and rude, not to mention treating me in a general manner, like I'm just a young, naive cancer patient, not an informed and independent individual. I drew great satisfaction out of reporting to them that, actually, I'm doing fantastic without the meds, thank you very much.

The other part I wanted to mention was Neulasta. It is the fancy, new-fangled shot that I get one day after each of my A/C treatments. It's a new drug, new this year, and it's really helping a lot of cancer patients out. It stimulates bone marrow to produce more blood cells so that your counts don't diminish as much as they normally would. If my counts are too low come my next treatment, I have to skip one, which is heartbreaking news-- no one wants to do this longer than they have to. With the shot, my counts drop for a week like normal, then skyrocket back to more than I had before I started treatments. It really helps to keep me on track with treatment as well as protects me from infection and germs.
The downside to Neulasta is that it costs $6,125 a pop. Because its makers are still in the first year of their patent, they can rake it in at highway-robbery prices for a few more years before having to compete with generic prices. The way that entire system works upsets me. I don't have to worry about the price because it's covered by my insurance, but what about people who don't have as good of a plan, or worse, no plan at all? They can't afford it and have to go on as people did before them, juggling their counts all on their own.
And what would that do to my insurance? Were I still on a group plan (I recently moved to COBRA), my choosing a brand name medication of that price because I have no other option would raise premiums for my entire group because my insurance is footing the bill and needs more money coming into the pool in order to cover it. It's messed up. I hope that all this reform we have moving through will eventually touch on extravagant prices charged for brand name medication inside a patent. I know they have to cover the costs of testing, production, labor, etc, but give me a break-- charging the old and sick $6100 for something they damn near need is absurd.

Anyway, that's how the treatment part of cancer is going for me. On my down days, I read, watch True Blood (such sweet, succulent obsession...), facebook like it's going out of style, play video games on the PS3 Wyatt has so generously loaned me, write, play board games or enjoy time with Sean. I can't really go out in the daytime as the heat really beats me to the ground, but I try to go on walks in the evening and hike when it's raining. Those types of activities are usually left for upswing weeks though, on a really low down day I have difficulty walking to the end of the driveway without taking breaks.
I'm also a full on baldy now and I'm quite fond of it. I get a surprising amount of cat-calls and congratulations from total strangers on being bald and "being brave." That compliment is strange to me. I understand that it might be embarrassing for some women to go out without a head covering of some sort, but I wouldn't say that embarrassment is a sign of weakness, so adversely, I don't see unabashedly showing my head as strong-- I just don't care. I look like what I look like and right now I'm bald and have one boob, so that's what I'm going to run with. That's not bravery, that's apathy. :)

After my second treatment my hair was rapidly falling out and it was getting to be not only messy but a little gross. It's kinda nasty to wake up to a pillow covered in hair. Even though I knew it was going to happen and readily expected it, in practice, it was still weird to watch. I kind of lost feeling in my hair follicles so when I tugged on my hair, it would fall out devoid of sensation-- super strange. I decided after a few days to just rid myself of it so I could stop vacuuming everything and getting hair all over Sean.
I took the clippers out to the side of the house, then thought better of it and decided to see how much of it I could pull out by hand before shaving off the remainder. It was a surreal and exciting experience, I mean, how often do you get to experience pulling out all of your own hair? It was bizarre but really fun. I just stood maniacally giggling on the side of the house, pulling out fistfuls of hair and watching them flutter down to the cement. I got a fair amount of it out before having to shave off the more stubborn bits.
Now, it grows in a little bit, mostly on my sideburns and around my face, so I have to shave my head a couple times a week. Guess it's good to know that it's ready to grow back as soon as I quick poisoning myself.

As far as appearance goes, the having one breast bit makes some clothes a little tricky, but for the most part, I either stuff a bra with gauze in shirts I can't really go bra-less in, or I wear shirts with built-in support and don't care that I look a little lop-sided. I actually get a big kick out of watching people quizzically try to figure out what's funny about the way I look without seeming to stare. The moment they figure it out is priceless. :D
I wanted to cover all of the nasty medicine-related parts of this first before going into all of the fun times I've had over the past month or so. Perhaps I'll include that in a separate post. The good times have been oh-so good.

Much love. Many smiles.

Good sir, my most sincere gratitude:

7/1/2010

Mr. Weihenmayer,

Hello there. My name is Jackie Ledbetter and I finished reading Touch the Top of the World early this afternoon. I've been thinking about your story somewhat frequently over the week I've been reading it, and it has come to mean something special to me-- it's helping me to put my own life into perspective, in a way. I wanted to write you about my thoughts so I looked your address up on the internet. Hopefully that's neither strangely stalkerish or an invasion of privacy-- I would hope you're accustomed to fan mail.

I'm 24 and fit the typical outdoor junkie profile: I live in SLC to be near the skiing, hiking, canyons, biking and caves; I have guided whitewater rafting trips in UT, ID, AK and AZ; I love to climb ice and rock but at a much more casual level of tenacity than my 5.12-hungry partners; and the past couple years I've worked as a Wilderness Therapy Instructor for teens.
I live for travel, family and friends, I love to cook, I have an avid affinity for reading, tattoos fascinate me, dancing to indie rock or bluegrass lifts my spirits, I'm relentlessly positive and easily intrigued, I'm always up for an environmental debate, I don't care for chocolate and I think astrology is total crap. quite average and content.

Last month, out of the blue, I was diagnosed with breast cancer. It doesn't run in the family, I've had no bizarre exposure, I eat organic and raw foods-- it was quite unexpected. I'm handling it very well because I'm an outstandingly lucky person. I have top-notch surgeons, a banner support system, and youth and vitality on my side, hopefully making chemo a walk in the park. I have yet to start chemo, it keeps getting postponed due to an infection I developed after surgery, which is what I've been mulling over as I read your book.
I had a left mastectomy 9 days after diagnosis. My surgeon put a tissue expander in place of the breast, a device that would help insure I have enough skin for my reconstructive surgery following chemotherapy. Unfortunately, a staph infection formed; I had another surgery to clean things out and switch out my old, gnarly expander for a new one. I just stopped antibiotics and the infection does not seem to have cleared. If it does not in the next few days, I will go in for my 4th surgery in two months, and will proceed into treatment with half a flat-chest.

The idea of that possibility had me nauseous with anxiety and fear. My boyfriend summers in Alaska and left the morning of my mastectomy, so he hasn't seen me. I was flooded with heartbreaking thoughts of his facial expression the first time he saw my new, freakish torso, trying to smile whole-heartedly but falling short. I imagined the 5 months of treatment I would undergo with my clothes not fitting unless I purchased an expensive prosthesis. I got really down thinking about reconstruction. If I lose my expander, I will have to have a gel implant rather than make a breast from my own fat, which creeps me right out. I couldn't keep out pictures of my body as decades passed, one breast staying eternally perky, one acting its age. or potentially awkward conversations with future lovers about texture, or what swimsuit shopping would be like, or any number of other festering insecurities that were cropping up out of nowhere as I stewed and stewed.

Then, I read the part in your book where you took your eye out in front of Ellie for the first time. To be honest, I was surprised that this was an insecurity for you because, to me, seeing a loved one I knew to be missing an eye, take out a false one would not be a big deal. It was at that moment that I realized the same applied to me missing a breast. I remembered my own resolve and sense of self-love that I had forgotten as I worried about surgery. I remembered that a loved one would continue to love me regardless of whether or not I'm missing a breast (or an eye), and if not, well, then that would be a welcome indicator of the quality of love we share.

I looked at all you have been able to achieve in life and began to see my situation for what it really is: an opportunity to take something that makes me different from others and use it to lead a rich and fulfilling life.

Your ability and ambition to pursue your dreams despite preconceived notions and the lack of predecessors to teach you how to achieve all of your accomplishments as a blind man,; is truly endearing and remarkable. Your book helped me to move past the immediate preoccupation of cancer by reminding me of my dreams. I have a gifted scientific mind and can't wait for the day I make a groundbreaking discovery in the field of island biogeography, or the effects of genetically modified foods on humans. I will someday smell the air of Peru, Bolivia, Cambodia and India, I will taste durian fresh off the tree in Indonesia and I will witness the gradual restoration of New Zealand's great coral reefs first hand.

Thank you so very much for unintentionally helping me rise above my self-imposed funk and reminding me of my potential and inherent passion for life. Your book will always be close to my heart and a go-to suggestion for friends in need of distraction from personal gloom or inspiration to make the best of any given situation.


With utmost respect and sincerity,
Jackie Ledbetter

Plastic does not always prevail

Guess what? I had to have another surgery. This is becoming old hat, but still holds some of the same intrigue and amusement it always has.

My "last" drain taken out on 6/29 and I was ecstatic! For the first time in six weeks I was able to toss and turn when I slept, or wear a dress, or extend my left arm to reach something without feeling the tubes that ran into my body shift under my clothing. Such a simple thing-- she cut some stitches, yanked five inches of plastic tubes out of tissue I no longer have feeling in, and covered the newly made hole in my side with a wad of gauze and tape-- but it brought me into a whole new, slightly forgotten world of comfort.
Dr. Chen cultured the fluid from my drain to see if I still had any traces of the staph infection that had warranted my third surgery. I got news of the results two days later and turns out everything had cleared up! All gone, nothing wrong with the new surgery. Things were looking great, there was no redness, pain, fever or anything unpleasant. I was finally feeling like "Yes, this is how this is supposed to feel and look!"

Then I went out to Ah Sushi/Oh Shucks the following evening to see Scott, a dear friend come visiting, and to have a few goblets of celebratory microbrew. All was laughs and good times, even ran into some beautiful folks I hadn't expected to see-- life as it used to be.
Until I noticed a stain on my shirt when I was looking in the mirror in the bathroom. It was circular and directly where my nipple would have been on my left breast. I was wearing a green and black striped dress so it wasn't the most noticeable, but it was a mildly puzzling stain. I didn't think anyone had spilled anything on me, including myself, it didn't smell like beer and even if it was, how in the hell would I get a circular spill? I was somewhat intoxicated at this point so I chose to shrug off this minor mystery, clean up my dress a tad and go back to the enticing laughter and bustle of the bar.

Upon further inspection the following morning, it was quite obvious that my skin had broken and my breast had been leaking the following evening. My first gut response was revulsion-- I had thought that was an experience I wouldn't have to endure unless I chose motherhood. I mean, yeck! My second thought was that this couldn't possibly be good. The fluid coming out was yellow and looked healthy, it just shouldn't have been coming out of my incision. My skin had broken along the incision where my expander had been rubbing most, making my skin thin and vulnerable. It had only broken a tiny, itsy bit, about the size of a pinprick, but yellow oozed out steadily if left unimpeded, so I knew I'd be seeing a doctor soon.

I went to my plastic surgeon first thing the next day. She pulled away the stacked, soiled gauze, studied the flow of fluid seeping out of my skin for a moment and said "I'm sorry Jackie, but I'm going to have to remove the expander."
I balked. That was so fast and blunt. Why is that the only way? She explained that now that the skin had broken, she guaranteed 100% that I would become infected again-- there was now an open conduit to the outside, bacteria-ridden world and they would inevitably find their way into my body. I was very disappointed. Everything seemed to have been going exactly as it should have been, it was just a minuscule break in the skin! but it was finished and now I was going to be flat-chested on one the left side.
She said she wanted to do the surgery that same day, perhaps after five when she would be done with all her patients. She mentioned the option of having another expander swap like my third surgery, but that would delay chemo an additional month and she felt I would be risking my survival if I opted to do that. I am already behind over a month from when I was originally scheduled to start treatment and she's adamantly suggested I do all I can to move on to the next step.
I sniffled into tissues and nodded in agreement. She was quite obviously right and I was eager to start chemo too, I was just momentarily stuck on petty worries. I sat in a chair staring at the floor for a couple minutes, my mind heavy with a flood of small things that don't matter but were overwhelming me as they all cropped up at once.

Ican'twearsundressesthisyearIdon'tcarewhatIlooklikeinaswimsuitbutitmightmakeothers
uncomfortableohmanthehotspringsaregoingtobeawkwardforonlookersiwonderifthatcorsetwillever
fitthesameagainwonderifiwillfeeljustasfeminineatleastiwillbeabletorunnowhopeseandoesn'tthink
it'stoofreakylookingmaybeiwillloseapoundortwobecauseofthis

And so on. Not thoughts that I would give the time of day usually, but when I'm surprised with big news out of the blue, it takes a second for me to sort out the big picture.

I called my family to inform them of the impromptu procedure as I was driving back to my grandparents' house. As soon as I got home, Intermountain Medical Center called to inform me that I needed to be at the hospital at 3:30, which meant that even though I hadn't eaten or drank anything yet today, too bad, can't til after surgery.

I spent my early afternoon taking pictures of my drippy breast, poking, prodding and sighing. I was feeling better and better as time went on and I steadily reminded myself that I didn't care if I lost a breast completely or not. I truly don't. I would care a whole lot more if it was going to be a permanent condition, but it's not-- it's 4-8 months and then I get a new one. All of my usual self-talk came back strong as ever and I was comforted by my soothing inner dialogue kicking back in to its regular gear; my rational self telling the strung out bit to calm the hell down because who I am is entirely separate from what I look like.

When it came time to go to the hospital, I was back to peaceful, albeit resigned, optimism. So I wasn't going to have a breast. Ah well.
My grandparents sat with me for an hour and a half while we waited for an anesthesiologist to free up. Since it was after hours, they only have two available and both were already in other surgeries. I remembered after a while that I had a friend, Sarah Child, who was staying in the same hospital I was sitting in, so I texted her to see if she was up and about. Turns out she wanted to come down to say hello before I went under.

My grands waited for her to show before leaving for dinner (they don't like to leave me alone before surgeries, understandably) and then went off to Mimi's since the nurse said I had an additional hour to wait. I caught up with Sarah for 15 minutes or so and enjoyed it so, so much.

Sarah is right around my age and even more active than myself, making a point to rock climb, hike, paraglide, sky dive, base jump, speed fly-- what have you-- as often as she can because it's what she loves. She got in a rather nasty speed flying accident a month ago and crushed her L3 (I think). She said her legs instantly went numb when she hit and she remembers the "oh shit" moment clearly. I was dumbfounded trying to imagine what that must have been like; pretty sure I would have lost all composure when presented with the possibility of being paralyzed below the waist.
Luckily, the spinal cord is all said and done above her injury, so that was relatively unaffected. They told her she wouldn't walk for several months, and despite that prognosis, already a month into recovery/rehab and she can stand on her own and walk several steps as long as she has something to lean on or someone helping her. She wears a sleek, white back-brace named Xena Trooper everyday and gets around in a wheelchair. She is scheduled for release on July 8th and doesn't yet know how living at home is going to work, there's still a lot she's limited to.

I suppose you could look at her situation as a tragedy, but being around her was remarkably inspirational, interesting and happy, not tragic in the least. She exuded so much positive energy and hope-- it was astonishingly beautiful to be around. She believes her attitude has greatly contributed to her hasty recovery and I couldn't agree more. I strongly believe that your situation is what you make of it. True, focusing all her mental energy on standing and walking around as per usual by tomorrow probably won't yield immediate results, but continually working hard toward strengthening her body, surrounding herself with loving friends, making jokes and laughing hard, and recognizing the ways in which she is still so lucky, is keeping her strong and motivated.

Sarah, if you read this, you helped me gain a lot of perspective. So I can't sit out in the sunshine for more than 10 minutes, I'm going to be poisoned repeatedly, all my hair will fall out and I've had a boob cut off: you're relearning how to walk. A year from now we'll both be back to what we love and be better off for all of this. Just you wait and see. ;)

I went into surgery much happier than last. Turns out that since this surgery would only be an hour or so, I wouldn't have to have a tracheal tube, otherwise known as the bane of my existence. After I found that out, I knew this would be a cake walk.
I woke up hazy as usual, stayed in recovery for a little over an hour, then was released home. It was already 10:30, so I ate a salad and went to bed, pain and worry free.

The next day, I was standing in my bathroom, looking at my reflection quizzically. I was about to take a shower and hadn't yet seen what my chest looked like. I kinda didn't want to yet but figured I might as well get it over with. I removed my compression vest and the big ball of gauze over my incision and gaped at what I had going on. It looked nothing like the pictures she had shown me to prepare me for what it would look like-- it wasn't flat like a boy as she had suggested, but concave, indented like a mini crater. I called my grandma into the bathroom to look at it and her adorable, proper British self said "Ah well...yes that is strange...it looks a little mutilated now, doesn't it?" We both had a good laugh over how ridiculous and unexpected it was for a bit, then I jumped in the shower and moved on with my day.

I went to a barbecue at Brian Bernard's parents house on the 3rd, which was oh so lovely. I get a lot of amusement out of people's expressions when I say casually "yeah, that's a drain, I just had surgery yesterday." I think most people think of surgery and imagine someone laid up in a bed in pain, having their meals brought to them and such. That's still true for a lot of surgeries, but apparently getting boobs removed has come a long way, hurts less than getting a cavity filled.

I'm happy with how I look and becoming more comfortable with each passing day. I feel more comical than sexy, which is quite a change, but not necessarily a bad one. I've been having fun playing around with clothing. I don't care about what people would think if I walked around with one side obviously flat and different, but I think I'll try to make it look relatively symmetrical just to avoid being stared at. My grandma and I had some good laughs trying to see what we could do with gauze and old shoulder pads underneath a tank top. It's strange stuffing my bra, I haven't done that since I was 12. I still might purchase a prosthesis, but they're kinda pricey so I might just make due with gauze or nothing at all. It's all the same to me.

This is a picture of the lovely freckles I have continually pushed to preserve. It's strange to me that most people hear I'm going to lose stretch marks, get a tummy tuck and new boobs, then assume that I must be so happy, like I'm receiving some sort of gift or something. My imperfections are a point of pride-- I love my freckles and stretch marks, I think they're sexy. Why would I want to lose something like that?

This is also how I look without trying to hide anything. Dr. Chen did something to my muscle to make my left ribs protrude more than the right, but it's hopefully just swelling and will go away eventually. Or I'll just have extra padding on my lower left ribs for no real reason. *shrug*







Ta-da! My grandma says it looks like an old lady without her teeth in. I agree.
Hopefully my next update will be about starting chemo, which will start in a week and a half if I have no further complications. Keep your fingers crossed...

Loves!

In reading...

I'm reading Touch the Top of the World, Erik Weihenmayer's journey through blindness that led him to the summit of Everest. Crazy story thus far; he mentions this poem being his father's favorite. Kinda stuck out to me. Could take a leaf out of that book.

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.

- Author unknown

Surgery; take 3.

I was not happy about the prospect of a third, unplanned surgery. Not happy at all.

The infection I had acquired two weeks prior to the surgery had put me through the ringer.
Two days after I hiked up to the saddle of Olympus with Anna and Jade, I was a sick puppy. I was dizzy and hot, my skin was obviously red and awful, the bottom of my breast was accumulating fluid and felt as jiggly as a water bed, and my arm was severely painful, making laying down or sleeping damn near impossible.
Dr. Chen came in and took one look at it and said "Oh my God, what happened? It was looking so good!" I told her of my recent hiking escapade, saying that I thought that might have done it and she just shook her head and said "Oh my God..." again. It's never good when doctors say that.
She put me on antibiotics, told me to take it easy, for real this time, and to come back in three days and see if there was any improvement.

I went home morose and feeling like an idiot. I was furious for pushing myself into infection. I had gotten a facial two days before Olympus and was convinced she had worked lymph into my armpit where I no longer had lymph nodes to take care of it, and it had started the seroma. I hadn't felt good for two days or so after the facial, so I thought a good hike would whip me back into a good mood and hopefully help me sleep at night. I had been told to take it easy, that I wasn't 100% yet and maybe hiking peaks was not the best of ideas, but I had done that hike over 15 times before and felt that it was no big deal. So, so stubborn.

I was determined to actually rest this time, legitimately just sit on my ass, watch hulu and tv, read, play bejeweled, whatever-- just make sure that I wasn't pushing any limits. Rest has been difficult for me, and hard for doctors to accurately describe. When I originally asked Dr. Chen what kind of activity I could do post-op, she answered "Whatever you're up for, you'll know if you're ready for it."
Then, when she found out I had been hiking through the foothills, up above Red Butte, biking, routinely going on two hour walks, and attempting 6 mile hikes, she was shocked. Guess she hadn't anticipated that I would feel up to those kinds of things and began giving much more cautious advice.

Those three days were absolute hell. I haven't had a fever in years, at least not like this. The highest it ever got was 100.9 but it felt like 106. I felt like I was burning-- for a three hour period I was laying under a blanket mountain on a couch in my grandma's basement, staring at the ceiling, absolutely convinced I could hear my brain cooking in my head.
I was able to get moderately comfortable for a little while, drinking as much water as I could, constantly changing position because my arm was excruciating. But when I had to get up to go to the bathroom, whew, that was the worst.
As soon as I was up out of my blanket sauna, the cold air of the basement bit deep into my muscles and made my arms, back and chest spasm, making me cry out all sorts of colorful expletives, muted to a mutter so as not to offend my grandparents. I would also wake up with chills out of nowhere at strange intervals throughout the night and convulse under the covers. I've never had that happen, it was as though I was being electrocuted, everything tensed and flexed, then released and started over again. I sweat through outfit after outfit, made all my blankets damp and gross-- it was wretched. The epitome of sickness as I've ever known it, such sweet misery.

This is what it looked like one day before my second appointment with Dr. Chen. Effing frightening. At this point, I was fairly positive I would be going into surgery again and that she wasn't going to be able to put in another tissue expander. I mean look at it-- it looked like a lost cause.
I was imagining waking up from surgery with half of a flat chest, what all of my clothes would look like after that, what Sean's reaction to my freakish looking chest would be when he gets back; all sorts of speculation and worry just because my current situation was less than ideal. It's amazing how fast my mind can spin when left to its own devices.

The day I went to see Dr. Chen, I was feeling much better. I was actually able to walk around the house and maintain a stable body surface temperature, one that wouldn't have me shaking and leaning on walls. I could also eat solid foods without feeling as though I was going to vomit it right up. I had tried hard to force down food the past three days, but I had only been able to put away the equivalent of maybe one meal. However, I had maintained hydration diligently and my energy level was decent. I had lost 12 lbs in the three days but I was feeling oh so much better.

The antibiotics seemed to be doing something, the redness had gone down a little bit and I was able to move my arm and do day-to-day tasks with less pain. Opening the fridge, or lifting a teapot, or peeling an orange with my left arm still twinged with pain, but it was manageable and for the most part. I just pushed through it and that was fine.

This is what it looked like the day of my second appointment. Not bad compared to the first, eh?

Unfortunately, even though things had improved, it was still red and that worried her. Fluid had also built up in the bottom of my breast again. It was accumulating at the site where I used to have a drain that was removed because it didn't seem to be putting out much fluid anymore. Now the cavity was secluded from the site the other drain was working on, so it was just pooling, increasing the likelihood of further infection. More importantly, increasing the risk of infecting my allograft and making it useless. That little strip of skin cost $10,000-- I did not want to lose it to pus.
She said that it wasn't looking good enough and she wanted to operate. Open it back up, clean out the whole area, remove my tissue expander, salvage all she could, and attempt to put a new expander in. I agreed very solemnly, but I was happy to do anything that would make the pain subside and make reconstruction easier in the future.

This is how it looked the morning I went in for surgery 6/17/2010. The dermabond had finally started to come off of the incision for the first time, revealing what my scar would look like. I was so impressed! It was a hairline scar, really nothing at all-- it was absolutely beautiful!
I was sad to lose such progress, even though it was hurting me. I suppose I was worried the next scar wouldn't look as good.


I wasn't worried about going into surgery; I don't think I ever am. I was rather excited to use my port for the first time-- I wanted to know what being stuck in the top of my chest would feel like. Turns out it feels exactly like the nurse was pushing a thumb tack into my rib cage. Unfortunately, my port was embedded a little deeper than they were used to, so she had to puncture 4 times to get it in well enough to draw from it. I now have a very firm grasp of what using my port would feel like. Sheesh.
Dr. Chen was delighted when she saw how great my breast was looking: the redness had reduced significantly, the pooling at the bottom wasn't near as bad as it had been before (probably because I had slept on my side and leaked out 60 cc of grossness onto my bed), and my pain was better. She was optimistic that the actual expander wasn't infected, so perhaps it would just need a good cleaning and a new expander would go in just fine.

Turns out she was right. I woke up with the usual hellatious throat pain from them shoving that breathing tube down my gullet, but no troubles other than that. I sat in recovery for an hour or so, sipping water and trying to decide if I was nauseous or not. Turns out I was. Got an injection. No longer nauseous. A beautiful thing, that.

I wasn't in any pain, I had full range of motion in my arm, my pectoral seemed to be flattened out on top, no longer raised and bizarre looking, the expander was in a better position than the first time, and my incision looked leagues better. I couldn't believe it! It was as if she had taken away everything that sucked about my lame-o breast and made it better. Now that's how surgery should work.

My grandparents took me to Whole Foods straight from the hospital because I wanted fruit and yogurt. I snatched up a basket and bee-lined it for the produce. My grandmother walked worriedly behind me as I charged through the aisles, looking for what I wanted. I don't know why, but I usually feel fabulous right out of surgery-- I can imagine it's disconcerting to watch. Sorry grandma. :)

I went home and have been happily resting since. I feel as good as I did before I hiked Olympus, I feel as though I didn't have surgery at all. I can lay on my back, or either side now without wincing or cursing. My stitches are no longer loose and leaking so I don't wake up lying in disgusting puddles of pus and blood at 3 o'clock in the morning anymore. I even feel like I could do a push-up right now. I'm not going to, obviously, but I actually feel like I could! A beautiful thing, that.

Dad, Kelsey, Kaden and Lakota are visiting for the weekend, which is always so, so nice. I love them so, wish I could see them more often. Lakota is a blessing, his happy little face makes me burst out in laughter-- he's perfect. I believe we are going to go see Toy Story 3 or peruse one of my favorite bookstores. Not a bad way to spend a Friday.

Loves my dears.