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.