Monthly Archives: January 2013

Artificial puberty, round two

At age 25 with plenty of planned years of awesome boobage ahead of me, I never really considered not having reconstruction after my mastectomy. Although the reconstruction procedure added 4 hours to my surgery and meant considerably more pain and discomfort, there was and is something important to me about maintaining these bastions of my femininity – and I think it goes deeper than just wanting to look good in a tank top, although that’s certainly a consideration.

I found this beautiful quote in the book Reconstructing Aphrodite, a series of essays from women who decided to rebuild their bodies after the devastation of a mastectomy. It really spoke to me, and I hope it will speak to you too.

From the moment I was diagnosed with breast cancer and faced a possible mastectomy, I knew I wanted reconstruction. This response was out of my own sense of art, symmetry, and aesthetic. It was the same response I would have to a tooth extraction or the loss of any body part. It speaks of how I approach an environment that to me is visually out-of-balance.

How could I be concerned about something so superficial while facing cancer? Perhaps because I did not believe that I had the worst disease in the world. Princess Diana said, “The worst disease in the world is the lack of love.” Mother Teresa said, “The worst disease in the world is to be nothing to nobody.”

I live in the abundant love of God amid friends and family who express God’s loving kindness. We are surrounded by survivors of all life’s troubles and grief, surrounded by hope, peace, and joy. I saw the choice for reconstruction as only one of the endless ways to create beauty in my world. It was my surgeon’s sense of art and beauty and her respect for the female form that gave me the confidence to pursue this path.

Yesterday I had my second expander fill. I popped another Ativan beforehand, so that I could remain calm in the face of the MegaNeedle. Alas, I do not possess quite the same level of mental zen as the author of the above quote, although I have been doing a variety of yoga poses to ease my tense back. Child pose is THE BEST.

I was too calm about the fill, perhaps, because the MegaNeedle got the best of me this time. I felt everything as my right breast was punctured. I shouted out in alarm more than pain, because I was so surprised to have any sensation. The plastic surgeon apologized, but said it was good news, because it could herald the return of feeling in my breasts. Sweet! Maybe I won’t have to go the rest of my life unsure whether or not I’m having a nip-slip.

It’s quite weird to be numb across such a wide swath of my body. For example, I noticed that the DermaBond skin glue the surgeons used to close up my wounds – which, as I previously mentioned, looked like the Joker’s face – had started to crack, peel and fall off. I’m sure that if I had sensation, that would be unbearably itchy, but I can’t feel a thing. Side note: Can you believe that after surgery they still patch you up using things that can be found at OfficeMax? Staples, thread, glue? What year is this?

Anyway, the plastic surgeon noticed it, and accelerated the process by peeling off the remainder of the DermaBond with sterile tweezers. Again, I’m willing to bet this would be uncomfortable if I could feel it. When she was done, I was absolutely stunned. The dark, bumpy, scarlike appearance of my wound was approximately 95% due to the DermaBond itself. The actual scar is probably less than an 1/8 of an inch thick and is currently sort of a medium-pink, likely to fade to skin color within a couple of years. Although scar tissue is basically the least of my worries, considering that my life is literally on the line here, I can’t lie: I’m happy that I’ll be able to bare sideboob with abandon by 2015.

Every time I leave USC, I pass a promise on the wall:

USC's Promise

I never fail to marvel at the hundreds of thousands of scientists who work every day to heal people like me. After my diagnosis, I read the book The Emperor of All Maladies, a biological history of cancer written by an oncologist. It was like picking at a scab – painful at times, but equally addicting – and it gave me an enormous appreciation for all that we’ve been able to achieve in the long history of cancer. Gordie read it too, and is considering getting a tattoo of a crab in my honor. You guys, I SWOON.

Real talk

Dear ABC Programming Executives,

I would like to propose a unique addition to your spring lineup of primetime television shows. It will be called The Oncologist, and, like The Bachelorette, it will follow a young woman – who also happens to be a cancer patient – as she interviews 5,000 different oncologists to choose the one who is right for her. They’ll go on hot dates in the chemo ward, and all those dreamy helicopter scenes will take place in MedEvac choppers. Not only will there be boob shots, there will also be an enormous amount of boob fondling, boob pressing, boob gazing and even boob needle sticking. At the end of each episode she’ll hand the best oncologists a single plastic tube from a bouquet of surgical drains. “Dr. Jones, will you accept this Jackson-Pruitt bulb?” 

If you like that, just wait for my other proposals: Dancing with the Surgeons and Keeping Up with the Kancer Ward.

Warm regards,

Michelle

Today I had yet another meeting with yet another oncologist, but this time it had a different tone. Now that my pathology report is in from the surgery, we can stop talking in hypotheticals and start talking about what’s actually going to happen to me. We’re shooting for a chemo start date of Monday, February 25. I chose Monday because Mondays suck anyway, so what’s little poisonous vein detergent here and there? The oncologists are recommending six cycles of TCH, a standard chemotherapy regimen for my type of cancer, follow by an additional 12-14 cycles of Herceptin (the H in TCH) on its own. The infusions take around three to four hours each, during which they give you a happy cocktail of anti-anxiety, anti-nausea, anti-allergy meds that make you sleepy and silly, so most people just nap in the chair. Additionally, every single one of those treatments will be preceded by a blood draw and followed by a shot of Neulasta, a drug designed to boost white blood cell counts. Neulasta can cause debilitating pain, so I’ll be getting yet another painkiller to deal with that pleasant little side effect. Otherwise, the main things I can expect to experience are fatigue and baldness. Fortunately, they’ve developed great drugs for combating nausea and vomiting, which I can expect to more or less skip over. Too bad no one’s come up with a hair conservation technique yet. I’d take a night bowing to the porcelain gods to keep my flowing locks, but oh well. Chrome dome is the price you pay for admission to the Chemo Club.

Since I just outlined a treatment plan that involves being poked by needles about a million and one times, I’ve decided to get a PortaCath. The “port,” as the cool kids call it, like basically an implanted IV that’s threaded through the jugular vein and into the main valve above the heart, then connected to the outside of your body with a round resealing rubber access point that protrudes about 1/4-inch from the chest, below the clavicle. It’ll make me a lean, mean chemo machine. I also like to imagine it’ll make me part robot. And I won’t have to go through any airport TSA scanners for a year, since between it and the tissue expanders I’ll be like 50% metal.

The PortaCath means one more surgery, but at this point, who’s counting? (I am. That’ll make four. Four surgeries scheduled since diagnosis: mastectomy, port placement, egg harvesting and, eventually, the glorious implant exchange.)

One more quick thing – another beautiful bouquet came today, this time from the pledge class below mine back in my sorority days. Going Greek was one of the best things I ever did, and to this day my pledge sisters are among my best and closest friends. I was so moved to receive such a gorgeous gift from my sisters. Normally I like to thank my thoughtful friends with personal texts and emails (I’m still not into the phone since my phone cancer diagnosis gave me phone PTSD), but I don’t know which one of these beautiful and wonderful ladies to reach out to, so I’d like to thank them all here! You are such wonderful people and I’m so proud you’re my sisters! LITB and AXOXO. Thank you PC ’08! Don’t think I didn’t notice the carnations. 🙂

Operation Oocytes

Remember when I said that my oncologists felt there was a pretty good chance chemo wouldn’t completely obliterate my ovaries? Well, turns out that a “pretty good chance” is more or less 50/50. So I decided to go ahead and talk to a fertility doctor about my options for making sure I’m able to pass on my DNA, because aside from this cancer crap, which may or may not be related to it, I’m a pretty big fan of it.

Gordie and I went to the fertility clinic on Saturday, and I immediately realized we weren’t mature enough to be there when we started giggling over the sperm-heart logo and terms like “semen washing” and “post-coital testing.” It was a strange mixture of emotions – half wanting to laugh at the ridiculousness of the whole thing, half wanting to cry over the same thought. Eventually, however, I remembered that I have cancer and cancer is Serious with a capital S so it was time to really buckle down and pay attention.

Luckily, I loved the fertility doc. He was calm, kind and understanding, and said he’d seen plenty of women in my situation. In fact, he said that I was in a better position than many cancer patients he sees, because I’ll only be 30 when all of this is finally behind me – leaving me with a higher chance of retaining natural fertility than someone who would be in her mid-to-late 30s. Admittedly, he has a bias, but he felt that it would be safe for me to undergo fertility treatments even though I have a hormone-receptor positive cancer. Just to be extra-safe, since we’re literally talking about matters of life and death here, it’s still important that I talk to my oncologists about the risks and benefits of fertility preservation treatments, which in my case will be oocyte cryopreservation – or, more simply, egg freezing.

Egg freezing is just the first half of in vitro fertilization. It’s the egg harvesting without the whole resulting pregnancy part. Essentially, if I decide to go through with it, I’m going to be an egg donor for myself. The process begins on the first day of my next menstrual cycle (and when that will arrive is anyone’s guess, since anesthesia, stress and a cocktail of eight different painkillers, anti-anxiety meds, nausea drugs and antibiotics can totally screw with menses), and involves 10 days of self-administered hormone injections using a small needle similar to an EpiPen or an insulin shot. The shots will probably send me into Super-PMS, involving plenty of bloating, complaining and more crying than usual, but they’ll stimulate my ovaries to produce 10-20 mature eggs, which are then harvested in an outpatient surgery where I’m knocked out for 15 minutes, a needle is inserted into my vagina (awesome!) and the eggs are suctioned out one by one, dehydrated and frozen. Later, when I’m ready to become pregnant, the eggs are inseminated in a lab and implanted into my uterus. The success rate for each implantation is about 60 percent, and I’ll hopefully produce enough eggs for 2-3 implantations. I’ll take those odds.

The whole deal is insanely expensive and costs an arm and an egg (see what I did there?), but there are some really cool programs available that can provide lots of funding for young cancer patients like me who barely have the financial resources to support a daily Starbucks habit, let alone the insane burden of quarter-million-dollar surgeries and $10,000 egg harvesting procedures. Did you know that each chemo infusion involves a drug cocktail costing about $20,000 before insurance? Yeah, cancer ain’t cheap.

So, after going over what I can expect if I choose to freeze my eggs, the doctor finished up by saying that he’d like to perform an ultrasound to check out my equipment and make sure that everything is in working order. Having been through a million needle sticks, biopsies and scans, I was thrilled that he suggested something so easy and simple so I leapt at the opportunity. “Oh, by the way,” he clarified, after I’d enthusiastically agreed, “it’s a vaginal ultrasound.”

Fortunately, the vaginal ultrasound wasn’t too bad. It was actually less uncomfortable than a regular gynecological exam and only lasted a few minutes. It was cool to see my uterus and ovaries, since before this I didn’t have any actual, visual assurance that they were in there. Gordie was, understandably, a bit uncomfortable throughout the whole ordeal, but it was over in a flash and I learned that I’m currently quite fertile and I don’t, like I’d irrationally feared, have ovarian cancer in addition to the mammary variety. The doctor even said that if I didn’t have the whole uncontrollable cell division thing going on, I’d be an ideal egg donor!

I am so thankful to live in a time when there are so many ways to start a family, like adoption, but carrying and giving birth to a child has always been something I’ve been looking forward to, as weird as that sounds. The best news I heard in the doctor’s office yesterday was that even if chemotherapy blasts all of my eggs into oblivion and sends my ovaries into premature failure, my ability to carry a pregnancy to term using donated eggs won’t be compromised. Facing the loss of so much of what made me feel feminine and beautiful and womanly – my long hair, my breasts – it was an amazing relief to hear that I’ll still be able to experience the miracle of childbirth, with all of its nausea, weight gain, bleeding and screaming. I’m not sure what I’ll choose when I decide to start a family, but it’s good to know my options are open.

Look how awesome my friends are!

I remember when I was in junior high school and a big, awkward loser (or more accurately, a tiny, awkward loser – I think I weighed about 75 pounds), a girl who was more popular than I was had a surprise party thrown for her. I was jealous, because nobody had ever thrown me a surprise party, and it seemed so fun.

Well, junior high schoolers, who’s cool now?

America's Next Top Sequin Soldier

Remember back when I posted about Glamoury Mammaries, my effort to turn sequins into my own personal breast cancer awareness “color”? It’s taken off pretty quickly, and my friend Sarah (in the awesomely sparkly pink Toms above) coined the term Sequin Soldiers to define the army of friends and acquaintances who bombarded me with sequined gifts and images of themselves wearing sequined shoes, sequined hats, sequined scarves and everything in between. Without me knowing, my amazing friends and boyfriend coordinated and got together to make this sign and arrange this photo shoot to show their support. Since college, we’ve scattered all around the country, so not everyone could make it down to Charlottesville to stand on the steps of my alma mater’s gorgeous Rotunda, but these four beautiful gals groped each other and posed like models for several hours to bring me this amazing picture – and a deluge of others like it.

THIS IS SO MUCH COOLER THAN A SURPRISE PARTY.

I have never felt more loved, more appreciated, more connected and more supported in my life. It seems like a dream. How could I have had the incredible fortune to meet such amazing people? And not just that, but made enough of an impact on them that they’d dedicate a whole Sunday to wearing these awesome outfits and holding that amazing, handmade sign, just for me? Is it even possible for one person to be so blessed?

It sounded like they had a fun time doing it, as well. They were mistaken for sorority rushees, to which my hilariously honest friend, former roommate and my one and only “Gyps” Caroline replied, “No, we did that years ago. Our friend has cancer.” A second person asked my platonic soulmate Katie Bo if they were returning from a party. “No,” she said, “the party’s right now.”

That’s a perfect description of my incredible, inspiring, beautiful friends – the party is always wherever they are. And it’s better than any surprise party any junior high schooler has ever had.

Best Friends Ever, with Beer

Seriously, how incredible is that sign? And those shoes? And those beers? But seriously, I miss beers.

Another amazing gift that cancer has given me is the opportunity to reconnect with a lot of people who I have fallen out of touch with. Many wonderful friends that I haven’t spoken to in years have reached out to me to offer their support and tell me how much they care for me. I believe it is rare to have the opportunity to reflect on so many amazing and caring friendships, even ones that have perhaps fallen a bit by the wayside after our lives have taken their disparate courses. I am honored and humbled that so many of you have taken the time to reach out, and you should know that it means a lot to me. Thank you all.

A few other notes about life at the moment:

Body hair level approaching baby Sasquatch territory; still not allowed to so much as look at armpits the wrong way for fear of causing infection. Tired of handling long hair and stressing about losing it during chemo; scheduling pixie cut for next week and full shave shortly after. Some oncologists concerned about fertility so meeting with specialist this weekend; updates to follow. Excited for boyfriend’s nine day visit beginning this evening! And full of love and thankfulness for all of the people who make my life so beautiful. It is truly a gift to be alive, cancer or not.

The most exciting regular day ever

I had an incredibly normal, basic, simple day today, and there’s really no way to convey how excited and happy that makes me.

Here is a list of normal things I did today for the first time since surgery:

1. Put on makeup. I looked in the mirror, which recently has been a little traumatic, and actually spent some time applying mascara, blush and lipstick. It’s amazing how something so simple can really boost your mood and make you feel pretty.

2. Put together an outfit that didn’t look like a cross between something Hugh Hefner would wear on a bad day at the mansion and costume pajamas that would make an awesome and comfy Halloween outfit. No sweats and slippers for me today! I’m wearing leggings with chunky socks and boots, a flannel button-up and a cozy faux shear sweater. I look like a normal 25-year-old instead of someone’s senile grandma robbing a Victoria’s Secret Pink store.

3. Slept in my own bed, on my side. Yes, you guys, I left my dear chaise lounge and went back to my own bedroom last night. I didn’t stay up ’til 2am watching late night talk shows. I didn’t have to sleep on my back and wake up three times in the night to take pain meds and empty my drains. I slept through the night and woke up without a sore back (or, at least, with a less sore back) for the first time in two weeks.

4. Went to lunch!

My beautiful, funny, sweet aunt came up from Laguna Beach to visit today. I was nervous about this because I haven’t had any visitors since my surgery, since I was too busy watching TV, eating chocolates and popping pain pills to talk to anybody – but I’m so glad she did. We went out to lunch at a cute cafe where I was a barista in high school. I felt like I was a super-secret spy because no one suspected I was a direly ill cancer patient, and everyone just served me my BLT wrap and jasmine tea assuming I was a normal, healthy 20-something. I should probably enjoy that, because once I go bald, it’s going to be real obvious that something is wrong with me.

My aunt also brought me an amazing outfit that I can’t wait to wear, now that I’m back to actually dressing myself, as well as some pastries, a fun puzzle and a book of prayer. I truly feel like I’m having Cancer Christmas. New amazing things arrive in the mail each day! In fact, over lunch, we were discussing the variety of reactions that people have had to my news and the different ways they’ve reached out to me, and it forced me to reflect on what truly helps at a time like this. Gifts are sweet and wonderful, but what I love more are the letters that come with them. What really means the most to me is when people I love call, text, email and write to let me know that they love me, too. The best thing to hear right now is how much my friends value our friendships. Thanks to all of you, because you have all done just that. In some ways – and I know this will sound bizarre, since it sounds bizarre even to me – this diagnosis has been a blessing. I’m like Tom Sawyer, getting a chance to listen to my own eulogy – hopefully, like Tom, without actually dying. I know that getting to the other side of this experience will give me a life of purpose and love I never could have imagined without it.

In the meantime, the visitors keep coming. My handsome and wonderful boyfriend comes into town tomorrow evening! I cried when I saw the email he wrote to his boss requesting the time off to see me. Sometimes, I can’t believe he’s still with me through this nightmare. There may be some icky things on the horizon for me, but spending nine days with my better half, with 100% fewer drains than I had previously, is something to look forward to.

Big drains poppin’, li’l drains stoppin’

I don’t know why I used that title, but it’s staying. Aaaaand now I’m listening to T.I. on YouTube.

Big day in Cancerland!

I woke up insanely early (i.e., 8:30 in the morning) to head to my doctor’s appointment this morning. Luckily, I was as excited as a kid on Christmas Eve because it was time to get my drains pulled! I cannot possible convey in words the happiness I felt in knowing that these things were going to get yanked out, thrown into a medical waste bin and incinerated in their own private biohazard hell for all eternity (or however long it takes to melt biohazardous materials). It was tempered, however, with a fair bit of anxiety because today was also scheduled to be my first expansion, so I went ahead and treated myself an Ativan before setting off.

The drain removal was easy and painless just like the first time, which was a relief. Truth be told, simply having the drain protruding from my flesh, even without moving, was far more painful than what I felt as it was yanked free from my innards and tossed asunder like the trash it was. The second and final drain was treated to a slightly different end. I asked the doctor if she could hold it up, so I could take a picture of it for my blog. She looked at me like I had three heads.

“Well, this is a first,” she said, holding it up.

“Pose with it,” I said, snapping a few shots. “Vogue, baby.”

She didn’t think that was as hilarious as it is, but the picture looks great:

Chest Burster

So yeah, two of those things came out of my chest this morning. You’re welcome, Instagram followers!

I enjoyed about two blissful drain-free, painless minutes before it was time to start the expansion, which looked quite a bit scarier than it was. The nurse wheeled in an IV pole with a bag of saline dangling from its curlycue thingee, which I do believe is the medical term for that wotsit on the end of the contraption. The saline bag drained into a long tube connected to the largest hypodermic needle I’ve ever seen. No joke, looking at this, I almost passed out. It was like the MRI room all over again. It looked like the kind of needle you’d need to give Shaq steroids. It must be used for elephant insemination or something. The base attached to it was the diameter of my forearm.

The plastic surgeon used a neat little magnet to locate the tissue expander’s opening, then plunged this gargantuan needle into my chest like I was Uma Thurman having an overdose in Pulp Fiction. Despite its heart-stopping appearance, however, the MegaNeedle was painless. I’ve mentioned in a couple of my posts that a complete mastectomy causes the loss of sensation in both breasts. I can feel my sternum and actually a fair amount of tissue in towards my nipples, but from the nipple to the armpit and upwards toward the clavicle, it’s as densely numb as my face after a cavity filling. I felt the pressure of the needle entering, but nothing resembling pain.

Then, gloriously, right before my eyes, I began to have the puberty I missed out on naturally. Fifty cc were added to each breast, bringing their total volume to 130 cc each. Not only are they awesomely even, they’re actually already larger than my original breasts, which were 103 and 108 cc in volume, respectively.

There’s some soreness and a bit of discomfort resulting from the fill, but not much pain. It’s more like a sensation of tightness, like I’m an overfilled tire. It’ll fade over the next day or two, and on Monday I’ll return to have another 50 cc added. Hyperspeed puberty, awesome!

I have another appointment today, with the breast surgeon. I expect he’ll go over my pathology report again, talk about some of my treatment options and make sure that everything’s healing to his liking. I’ll update again with whatever funny, bizarre things happen to me there. I’m sure there will be plenty.

The only way out is through

As a kid, I had a book – I can’t remember the title now – about a group of children having an adventure in the woods. They encountered a variety of obstacles, from mud pits to bubbling brooks, and each time, they and I, as a young reader, gleefully would repeat the same chant: “Can’t go over it, can’t go under it, can’t go around it – gotta go through it!”

It’s been at least a decade and a half since I’ve seen that book, but I’ve been repeating that mantra to myself over and over again for the last few weeks.

As Joseph Conrad wrote in Typhoon, “Facing it, always facing it, that’s the way to get through. Face it.”

We had a bit of a Drain Emergency today. I woke up this morning with a small dollar-sized patch of shirt soaked through with fluid, and couldn’t seem to figure out where it was coming from. Eventually, I just put it out of my head and went about my day, until I was sitting at the computer and realized that I could feel the wetness leaking down my side. I reached around and felt the drain site, as best I could with my limited post-mastectomy arm mobility – it was weeping clear serum. I reacted calmly and with a clear head. Just kidding, I totally lost my mind in panic.

My mom and I called the hospital, but they didn’t answer, so we texted the plastic surgeon, who made the error of giving us crazy people her personal cell phone number. Eventually, we got in touch with the nurse practitioner, whose completely calm, 180-degree reaction perfectly rebalanced the universe following my own freakout. She said this happens in about 50 percent of cases (NO ONE WARNED ME) and that it’s not a big deal and they’ll just take the drains out tomorrow and the little holes will close up and it’ll all be nothing. But just to be sure, she added, “Check for swelling in the area where your breast was.”

Wait a minute, where my breast was? Oh yeah, I don’t have breasts anymore. I might have rock-hard tissue expanders or, eventually, nice soft implants, but I’ll never have breasts again. Reality check.

In happier news, post-surgery shower #3 popped off today without event, except that I FINALLY shaved my legs, which was amazing. I feel like a werewolf reentering human society after a full moon. My armpits are still off-limits, however, and weirdly I’m okay with it. I’ve developed a severe case of armpit hair Stockholm Syndrome and I kind of think it maybe doesn’t look so bad to be a girl with hairy armpits? Maybe? I don’t know anymore! Up is down, black is white, body hair is the new no body hair! Cancer changes everything!

Pity, party of one

Due to my mom’s incessant nagging, I finally left my house today and acted like a normal human being for about 20 alternately blissful and miserable minutes. I pinned my little drain buddies to the inside of my blouse, put on jeans (JEANS! Holy crap, you guys!) and walked my dog around the block. It was a gorgeous day – 75 and sunny, as usual around here – but I still felt incredibly sorry for myself. Pretending like I didn’t just have life-altering surgery and I’m not gearing up for the most miserable six months of my short life while my body is pumped full of heart-damaging, nausea-inducing poison is kind of exhausting, and it also just serves to remind me how far I’ve come from normal.

Okay, so I’m throwing a bit pity party for myself today, but I have no reason to. What’s happening to me sucks, but it doesn’t suck any worse than what millions of other people are enduring every single day. Whether it’s a disease – cancer, AIDS, Alzheimers, MS, Parkinsons, there’s no shortage of terrible ones – or a death in the family or the loss of a limb or a function, life is full of hurdles for each and every one of us. It never ceases to amaze me, the strength that we posses inside. People have called me brave, but I wouldn’t call it that, unless you think developing a Mexican food addiction and watching 200 episodes of Law & Order as a coping mechanism is bravery. It’s the ability to bear this burden at all, however ungracefully, that keeps me in awe of the human spirit.

I guess all those hours watching the Oprah Winfrey Network are really sinking in.

Truth be told, in fact, the worst thing happening to me right now is some moderate pain at my drainage sites and the fact that I can only sleep on my back. Prior to this incident, I don’t think I’d slept on my back for a day in my life, and now I know why: It’s massively uncomfortable, and I feel like I’m in a coffin. I wake up with the spine of an 80-year-old every morning. The day I can sleep on my stomach again, if it ever comes, will be the happiest day of my life. I truly think it will outrank the day I was admitted to college for sheer euphoria and relief. If you need some evidence for just how utterly devoid of joy my life is now, remember that the thing I’m most looking forward to in this world is changing my sleeping position.

I’m sorry that I haven’t been updating as much, but things are more or less in a holding pattern until the next steps are taken on Wednesday. Unlike most other terrifying things, cancer is slow. It’s not a quick adrenalin rush. It’s months and months of testing, waiting, re-testing and waiting more, punctuated by short bursts of excitement like a drain pull or a surgery or a few hours in the chemo chair. It drags on and on. But when I get really down in the dumps, I just remember: All of this should be done by my 26th birthday.

By my 26th birthday on October 18, 2013, I’ll have some short new hair, some nice new boobies and not a drop of chemo in my body. I hope you’ll all be ready for a trip to Vegas. Now that I never need to wear a bra again, I’ve got a nice backless dress picked out.

Why so serious?

My wonderful friend Sam sent me an incredibly sweet email yesterday about the Japanese art of kintsukoroi. Kintsukoroi, meaning “to repair with gold,” is the ancient practice of repairing pottery with gold or silver laquer and understanding that the piece is more beautiful for having been broken. Here’s an example:

I’m flattered that Sam thinks it’s an apt metaphor for my situation, even though my boobs look more like The Joker than beautiful Japanese pottery.

We made some big strides toward normal over here in my convalescence suite today. I took a shower, and it was significantly less traumatic than my last cleansing experience. I was able to do most of it on my own, although I had to stick my head out of the shower curtain for my mom to shampoo and condition my hair, since I can’t reach my arms high enough. I’m still not allowed to shave my armpits, and I have to say that frankly, I’m beginning to have some sick curiosity about what’s going to happen to them. The hair is as long as I have ever seen it. It’s practically long enough to braid. I’m turning into my own morbid anthropologic experiment.

Since I only have two drains now, it’s getting a lot easier to manage them. I tied a piece of twine around my neck and hung them from it like a sick tribal gourd necklace. I walked around like that for a while, but eventually my bizarre body fluid jewelry started to bother me, so I went back to just carrying them around like little bloody purses. I will not miss these awful accessories one bit once they’re gone. Wednesday can’t come soon enough.

Now that I’ve had a few days to think on it, I’m incredibly happy with my decision to undergo a bilateral mastectomy with reconstruction. Although I’ll always be scarred and I’ll never be able to breastfeed, I think I made the right choice for me. It’s hard to describe what cancer does to your sense of trust, but it truly makes you feel like a warrior who has somehow ended up in the enemy’s barracks. I don’t feel safe here; I feel like I could get any kind of disease next, like all bets are off when it comes to my health. Saying goodbye to both of my ticking time bombs, however, has weirdly given me back a little bit of peace and normalcy, like maybe I can let my guard down for a minute and there won’t be some other organ waiting to rise up in mutiny against me.

So now that things are slowly getting back to normal as far as my surgical wounds go, it’s time to start thinking about the next step in my treatment: chemotherapy. I have about 1,000 interviews lined up with oncologists at every research university from UCLA to Stanford, even though everybody seems to be recommending the same thing: a regimen called TCH, combining the drugs Taxotere, Carboplatin and Herceptin, followed by five years on Tamoxifen. So far, the doctors seem to be in agreement that my natural fertility will most likely return once my treatments conclude, so there’s no need for egg harvesting or embryo freezing. I’m thankful for that, because frankly, I don’t know if I could tolerate subjecting my body to more drugs, needle pokes and surgery. Each new day is some fresh hell in the medical world for me. I truly count my blessings that things are looking good for my future plans to have little ones running around.

Aside from temporary or (hopefully not) permanent infertility, this toxic cocktail (toxictail?) has a number of other side effects, including some deliciously fun things like nausea, vomiting, bone pain, body aches, fatigue, nail death, heart damage and, of course, hair loss. To be honest, however, I’m not totally dreading the hair loss. Without this impetus, I probably would have gone my entire life without knowing how a shaved head feels. I think the experience will be liberating. I’ve already started a desktop folder called “Pixie Power” that’s filled with pics of gals who rock the shorter hair. Give me the Emma Watson, please!

“Jackson-Pratt drains are pure evil”

The above title is the exact search query I entered in Google this morning, because I had to know that I’m not the only person who is ready to rip these things out of my sides with sheer force and throw them into the garbage disposal for revenge. I am so tired of these awful extra appendages I’ve been given. It’s like walking around with heavy, leaking tentacles hanging off my chest. I feel like a six-armed monster ready to terrorize local children at the park, if I had the strength to walk/shuffle the three blocks to said park.

In my Googling, I stumbled upon plenty of other breast cancer and BRCA 1 & 2 blogs written by women who’ve had the unique displeasure of undergoing a double mastectomy. A lot of these women wrote about pinning their drains to the inside of their blouses to go back to work or wearing a cute belt around their favorite sundress to keep the drains supported so they wouldn’t tug or pull at their skin. WHAT. THE. F–K. You guys, I’m not kidding when I say that I haven’t changed out of the same pair of leopard print pajamas in six days. I’ve taken one shower, and that’s a generous term for what happened, because actually I sat in an iron piece of patio furniture that my dad had brought upstairs while my mom blasted me with the removable showerhead. Basically, I only get up out of my chaise lounge to pee, and I swear that if I could get away with just wetting myself right here I’d do it. How in the world are these women doing anything that resembles normal life? I put on jeans today for my doctor’s appointment and the only thing I could think the entire time I was wearing them was how not worth the effort it was.

Reading these other blogs, I started to think that perhaps I was exaggerating the hospital scene I’d set up in the living room to manage my discomfort. After all, I’ve dropped down to half doses of Percocet (yay for weaning off of dangerously habit-forming opiates!), and my appetite is beginning to return to normal. The only thing that I have to keep in check, sadly, is my sense of humor. Laughter is not the best medicine if you have just undergone massive chest surgery. It’s the single most painful thing on Earth.

There’s another reason I’ve got to turn down the dial on the self-pity, and that’s because two of my awful JP drains came out today! Their output had decreased significantly over the last couple of days, and I knew that today was the day they’d probably be removed. I was nervous and nauseated all morning, because it’s really hard to be excited about the idea of someone pulling a bunch of medical tubing out of the wasteland that used to be your cleavage, even if you know it’ll make you more comfortable in the long run. Luckily, the whole ordeal lasted literally less than a minute. The plastic surgeon cut the stitch on my skin, which was a relief in and of itself, not unlike removing a heavy earring or an itchy piece of clothing. Then she braced herself against my ribs and just ripped those suckers right out.

I’ve been thinking about it all day, and I still can’t come up with a way to describe the feeling. It’s certainly not pleasant, but it’s not painful, either. I guess the only way to communicate it is to say that it feels like someone pulling a foot and a half of plastic tubing through your chest and out of a hole in your side. Because that’s exactly what it is.

The relief was instant! I immediately felt like I could breathe easier, and some of the weird lumps and bumps in my chest disappeared. Some of the tightness is gone, and the pain has decreased immensely. I even felt healthy enough today to relax outside by the pool with a trashy magazine, which had me forgetting for an hour or two that I’m a cancer patient. And when you’re really ill, that’s pretty much the most you can ask for.

The other two are coming out on Wednesday. I’m just counting the days.

Also, I have a little piece of business to take care of. These incredible, beautiful, one-of-a-kind, AMAZING sequined Glamoury Mammary shoes came in the mail today!

Glamoury Mammary Shoes

They’re exactly the right size and I’m already SO obsessed with them. The only problem is that they didn’t come with a note or a return address, so I have no idea who they are from! If you sent them, please text me so that I can thank you. Whoever you are, you are a wonderful person. I can guarantee that these special sneakers will be on my feet at every single scan, test, appointment and chemo session in my future. I know they’ll bring me luck.