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.

Facebook catch up

I posted this on my facebook account as a way to inform those who had been rudely left out of the loop due to my negligence, fatigue or forgetfulness. It was posted 6/9/2010.

To answer the question you all ask: I'm doing great. In fact, in comparison to the stereotypical reaction one might be expected to have when told she has cancer, I'm spectacular. I think I owe it to those of you who have sent kind words and well-wishes-- yet been left curious and uninformed due to my busy-ness-- to expound upon my experience. It's really not as bad as you may think.

I realize that it's somewhat irreverent and perhaps macabre to say, but I'm enjoying this leagues more than I'm hating it. As is well known, I'm easily fascinated and impassioned, and all this cancer jazz has been wonderfully interesting, not to mention educational. Imagine, you're only vaguely aware of this illness, prolific yet ambiguous, that has always remained on the periphery of your life focus, ominous in reputation, but you're more or less unaffected and uneducated about the business because you have no emotion ties to it. Then, out of nowhere, it comes stampeding into the forefront of your mind, influencing lifestyle and invading consciousness to the point that it's a near constant preoccupation.
I experienced that shift in mindset and routine in a manner quite similar to almost all people who hear they have cancer. But after that, similarities are few. Here's how it's looked from my eyes:
I found a lump in February. I couldn't even really determine if it had always been there or not. It was about the size of a little marble, didn't hurt, did nothing. I decided it was probably nothing, so I waited until my annual physical in April to get it looked at. My doctor referred me to a breast specialist to have it looked at further. She assured me that breast lumps in women my age are rather common and it was probably either a cyst or nothing at all. She seemed to wholly believe what she was telling me, so I believed her as well.

I went to my new doctor, Dr. Leckman, a week later and liked him instantly. Well, actually, I liked the way he had decorated his office instantly, which translated into me liking him personally even more. He has beautiful African masks and tablets on the walls and a little hand-carved wooden statue of Ghandi that always makes me giggle with delight. He was very pleasant and personable, professional though not monotone and unemotional, quite essential for non-irritating communication. I heard for the second time that lumps are quite common in women my age, that they're usually temporary and just get absorbed by the body. He almost assured me I had no need to worry-- "you're quite young for it to be anything serious." He ordered an ultrasound for me, to see if it was fluid-filled, which would mean harmless.
I quite like ultrasounds, turns out. The cold gel makes me giggle. Which apparently isn't ideal for a breast exam. *shrug* She took a bunch of pictures, told me it was solid and about 2x4 centimeters-- a little root beer barrel candy I'd made all myself. I didn't know what any of that meant, just picked out that it was solid and I had thought that wasn't a good thing...
Leckman continued to say that it was probably nothing, but he also said he would like to take it out (as is his usual practice for all solid breast masses) and biopsy it, just to see what it is. So I did.

I wasn't particularly nervous for this procedure, he had told me I wouldn't notice significant tissue loss when comparing one to the other, which had been my only real concern. Everyone up to that point had been telling me how benign everything turns out to be, kept siting my age as a reason to rest assured, etc. I went into surgery happy and relatively carefree. I was somewhat worried about barfing on Sean or my mom from the anesthetic, but it turned out to be an unfounded fear. The surgery was on a Thursday, I was said to expect results on Monday. I also had planned to get the go-ahead that everything was fine so that I could leave the next day to drive to Alaska with Sean, then fly back. His truck is a little iffy and I would have been along for company and to help push the hunk of metal in the event that it shit the bed. I found the idea thrilling.
Then, Monday morning, the radiology department at St Mark's hospital called to confirm an MRI I hadn't scheduled. Not good. They said, oh sorry, it seems as though your doctor ordered an immediate MRI. Shit. I gave Leckman a call to casually ask what was up, cause random appointments didn't sound good. He said that he had received my results but...."would you be able to come in and see me in person?" I said of course and hung up, then called Sean and my dad asking them to come. I realized I most likely had cancer as I stood by the glass table in my grandmother's kitchen, phone still in my hand. It was a mildly disconcerting notion, mostly I was just numb. I tried to hold on to some hope that he would say something other than cancer in a face-to-face meeting, but I knew better.

An hour later, I was being gently told that I had breast cancer. Invasive ductal carcinoma, to be exact-- my milk ducts in lefty were no good, neither was some of the surrounding tissue. The part that hurt the most from this entire encounter was the look in his eyes and sadness in his voice-- I could tell he felt sorry for me and that killed me. He kept reiterating that I wouldn't remember all of what he was saying, said I could refer to the drawings he began scrawling, don't worry, I don't expect you to remember all this, it's a lot of information. He said that breast conservation (lumpectomy) was an option, but not the one he recommended. He felt that a full mastectomy would be the best route since I was so young and had lots of years to develop further complications. My first thought was, "man, that blows," my second thought was "do whatever you think is best, you know way more than me" but I wasn't that overwhelmed, just trying to imagine what my life would look like because of this. If anything I wanted to listen intently and learn as much as I could to better understand this whole new jargon.
My dad came in shortly after the C word had been dropped, but he knew when he saw my face. My dad was in Salt Lake for a follow-up appointment after getting half his ear chopped off and lymph nodes removed from his neck due to melanoma. Some of my strongest emotions from that appointment were directed toward he and Sean: how grossly unfair to be dealing with possible stage 4 yourself, then find out your seemingly healthy and independent daughter is diseased. Or to find out your new girlfriend is going to be bald, missing a breast, in deteriorated health and not as active when you get back from your summer job. It's a strange mental habit of mine, but my heart went out to them far more than myself.

Everything moves fast once you're diagnosed, very fast. Leckman gave me an itinerary of my next 6 days and all I had to do was show up. MRI, oncologist, plastic surgeon and a spit test to see if I was BRCA positive. Upsetting, but very easy to navigate. The hardest part, irrefutably, was telling the people I loved that I had cancer. That broke my heart a little bit at a time. Don't any of you (you know who you are) dare apologize for your reactions, they were genuine and beautiful. But it was in no way easy to repeatedly witness my friends' faces shatter with confusion and worry, or to hear my family members cry over the phone. Some reacted as if I'd told them I'd died and just lost it. I like to think of myself as one tough chica, but that was almost too much to bear.

I was scheduled for surgery on the 12th, nine days after I was diagnosed. It would be a left mastectomy, possibly a double if the test results came back that I was BRCA1 or BRCA2 positive. Unfortunately, this is week was when my insurance went haywire. Due to a litany of miscommunications and oversights, I "lost" my coverage for a very brief amount of time, long enough for my BRCA to make it to its destination and sit on a desk lamely because it looked as though my uninsured ass wouldn't be able to foot the $7000 bill. I ended up having to go into surgery without my results, which would mean that if they did come back positive, I would have a second surgery after treatment. The results ended up being negative, but all of the stress and steady flow of phone calls informing me that I wasn't covered and was perhaps a shady bastard, really got to me. I felt it was the last thing I should have had to deal with after being informed I was going to have my tit chopped off and binned-- but it is what it is.

Sean left the morning of my surgery, which I think was harder on him than me. I can't even imagine how bad that sucked. I went to sleep with a smile on my face and woke up without a breast or a boyfriend, true, but I was immediately surrounded by loved ones, so I felt most secure. I had a very pleasant pre-surgery experience. I like hospitals, always have. Some really intense pain has happened to me inside of them, but being around medical professionals makes me really happy. I have the opportunity to be a good patient, smile openly and truthfully, ask them how they're doing, compliment a good stick or jokingly berate shaky ones-- I feel a great sense of power by improving someone's day, even if it's only for the moments they are in my presence. It's easy to make hospital workers smile, they seem so accustomed to people who resent, fear or don't appreciate them-- I found great joy in not being of the norm.
I also had my beautiful mother with me right up to the knife. She was surprised I wasn't more upset, which is understandable, I heard from many that I was being oddly optimistic and cool-headed about everything. But I believe part of her horror concerning boob-loss rooted from imagining how terrifying it would be for her, and we are two entirely different beasts. :)

I felt rather well directly after surgery. They wheeled me from the recovery room to my own room which had a semi-comfy couch for my mom to sleep on, DVDs and books for the asking, cable (what a novelty!), pain meds when I wanted them and a breathtaking view of the Wasatch from my window. Quite luxurious and everything smelled very clean but not quite sterile, which I liked very much. I was in somewhat constant pain, but nothing injections didn't rectify.
I ate my hospital dinner, which was lovely, perhaps more so if I had been 85 and didn't need much food. My mom and her best friend went out to get me Rubio's and Coldstone-- much better. Dr. Leckman came in while I was gorging myself and sitting upright, legs over the bedside. He didn't recognize me at first because he had expected me to be sleeping or in a great deal of pain, not laughing, chatting and eating. I also don't think he had realized i had shaved my head because I had been wearing one of those silly cotton shower caps when he saw me last. He said all had gone well and that I looked great.
Dr. Chen, my plastic surgeon reiterated the same opinion when she came to check on me. She had placed a tissue expander between my pec major and minor, had thrown out my nipple and areola because they wanted to kill me, and glued me up in a marvelous straight line. It was a funny roundish mini-boob that seemed to have a mouth fixed in an indifferent expression. In fact, if you've seen Nightmare Before Christmas, you know the doctor who made Sally? Yeah, kinda looks like that guy.

I went home the next day with drain-care instructions and a few aches and pains. I received many wonderful visitors, further instating my belief that I have outstanding friends. I thank each and every one of you for that-- it meant a lot to me even though I seemed stronger than you had anticipated.

And that's about up to date. I've been trying my damnedest to be sedentary, take it easy, eat well, but also see friends as often as possible and enjoy my life as I used to. I get really restless. TV isn't really for me, at least not more than a half hour, I've been trying to sit out and read, but I keep looking out at the sunshine I could be enjoying and thinking of hikes I'm not hiking. I pushed it perhaps a little too soon by hiking Olympus. I had been feeling pain in my arm when I slept for two days before the hike, not excruciating but quite manageable, and I thought a good peak would work wonders. Turns out it exacerbated my symptoms and gave me a muscular infection. Not good. I go back in two days and hopefully the antibiotics will have worked their magic, otherwise my expander will be taken out in an additional surgery and my chemo delayed further. I was so excited to start too-- I was scheduled for my first treatment today, but, alas, can't do chemo if your breast has plague.

Now I will attempt to get back into jigsaw puzzles, increase my anti-inflammatory foods intake, drink buckets of green tea and kombucha, stick to my room and think blissful healing thoughts about lefty in the hopes that she'll stop acting like a beezy. That would be nice.
I hope this helps some of you. I'm not good on the phone, I quite hate it actually, so lots of you haven't received updates. Well, here you are. I know it's long, but such is my style. Skim it, if you like.

Love all of you, hope you are all as happy as I or better.

This is my jam!

I've always wanted to blog, thought I might be good at it. However, I have come up with a litany of excuses over the years, prolonging writing for this reason or that: I'm too busy, I don't own a computer, I should focus on reading, I should be more social and not spend so much time online, no one is gonna read all this anyway, etc.

I think I'm ready to do this for me now. Wanting to educate my loved ones about what it's like to go through breast cancer is an obvious catalyst; I find it fascinating that everyone knows what cancer is, yet those who haven't lived with or near it know very little about it. So many of my friends have been at a loss as to how to support or help me. I suppose this is an attempt to show how well I'm doing, not how awful, and that the best help you can do is to love me and tell me so.

And so
let it begin.