Settling down, physical therapy, and a little bit of Pam Anderson

Let me start with a huge THANK YOU to the wonderful people who congratulated and endorsed me for the WeGo Health Rookie of the Year Award. Your kind words, thoughts and support always make me grateful. Nominations end December 31, and judging follows shortly. I will keep you all posted, and if you would like to endorse me or share my endorsement link with someone else, here’s the URL: http://badges.wegohealth.com/endorse-me?referrer=f7fq%22

It’s been exactly three weeks since the “big unveiling” after my implant exchange surgery. You’ll remember that I was less than pleased with what I saw in the mirror: my left nipple seemed to be about twelve feet higher than my right nipple, and all together the left breast appeared much smaller and tighter. I never thought I’d end up with a rack like Pam Anderson’s after the surgery, but I also didn’t think I’d end up looking like a little kid playing dress up with socks and tissues in her mommy’s old bra.

Hey…I’m a vegetarian too…maybe my boobs WILL end up looking like Pam’s after all!

Dr. Festekjian told me to give it time to settle, even going so far as to suggest that I STOP thinking about my breasts for a while. Fat chance, Dr. Festekjian.

Well I have to give the man credit–he was right. The left breast has settled a lot, looking rounder and less tight, and the nipples are also much more even. Dr. Festekjian said to wait two months, but it’s not even one month after the surgery and I can already see a big difference!

I guess he does know a thing or two about plastic surgery. He’s more than a pretty face, you know.

At my post-op appointment after the implant exchange surgery, he wrote me a prescription for physical therapy. I researched offices in the area that accept my insurance and landed on a place nearby called Women’s Physical Therapy.

In addition to standard sessions with physical therapists, Women’s Physical Therapy offers massage therapy, Pilates and yoga. They specialize in breast cancer rehabilitation, including post-reconstruction.

My first appointment was Tuesday, December 4. I met with a PT named Jenni. As it was an introductory session, we spent a fair amount of time discussing my mastectomy, complications, and ultimately reconstruction, as well as my goals (get strong in a healthy, safe way) and current exercise plan. Then she took some baseline measurements and stretched me out. The stretching was almost like an upper-body massage; she did a lot of kneading. Knowing that my left implant needs to drop and settle, she showed me stretches I can do at home to help.

Jenni then assigned me some resistance band exercises to work my triceps, biceps and shoulders. I’m supposed to do them every night, and right now they are so simple (just one set of 10 reps) that it takes less than five minutes.

I’ve met with Jenni twice, and I also had an appointment with the Pilates instructor, AnnaLisa. In high school I did mat Pilates DVDs all the time. (Side note: if you are ever in the market for a Pilates DVD, pick an Ana Caban series. AVOID MARI WINSOR LIKE THE PLAGUE SHE IS SO ANNOYING.) This Pilates session was NOTHING like the Pilates I remember! Nope…there was no Seal, no Corkscrew…not even a measly Roll-Up!

Instead AnnaLisa had me focus on very small movements using my muscles in ways I’ve never tried. There was no cardio involved, yet I felt like I did get some sort of a workout. It wasn’t easy! Who knew drawing circles in the air with my elbows could be so tiring? Oy, I was exhausted after!

After my sessions I’ve felt a bit sore, but it’s not alarmingly painful. It’s almost more of a pleasant indicator that the sessions are working and that my upper body muscles are being stretched out and strengthened just a little bit each day.

I have another session with a physical therapist on Friday, and then a few more next week. My schedule is spotty since I signed up with the office so late in the year and I can only stop by in the early morning or late afternoon. Hopefully I’ll be able to set up a steady plan for 2013.

Speaking of 2013, what’s everyone doing for New Year’s and the holidays? Bryce and I are going up to Yosemite for Christmas, where we’ll see my parents and my cousin Justin. Then we’ll be celebrating New Year’s in Redondo Beach. But before all that there’s my company holiday party this Friday night. I stumbled upon a Forever 21 gift card in my wallet (lucky find), so I’m going to treat myself to a new dress for the party–my first since the implant exchange surgery!

Well, I’m signing off. It’s bed time! Now if I could just pry this giant sleeping baby off of my lap…

photo(22)

I’m sorry Bryce, I had to do it. You just look too cute in that onesie.

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I see a tissue expander in my future…

Can you believe it’s been three months since that awful episode of cellulitis? I really can’t. But it’s true! And you know what that means…

TISSUE EXPANDER REPLACEMENT SURGERY–YAY!!!!

This coming Monday, July 30, I’ll be making the trek back up to what seems like my home away from home, UCLA Medical Center. At 8 am I am scheduled to have a PICC line placed at Ronald Reagan hospital; following the PICC line procedure, I’ll head over to the UCLA Outpatient Surgery Center in the building next door to have my tissue expander placed.

It was a bit of a hassle to get approval for the PICC line, but I’m so glad we were pushy (shout out to my mom for making it happen!) For those of you who don’t remember, I have BAD veins. They run and hide when I get within five miles of a medical facility.

When I know I am going to have my blood drawn, I prepare the day before by drinking a lot of water to pump up my veins. When I was admitted to the hospital for a cellulitis infection in late April, my veins were not prepared for needles and I was already dehydrated from being sick. When the nurses tried to draw blood, it took them three pokes (with multiple people involved) until they had success; when they tried to start IV antibiotics, it was even worse.

I ended up being poked for blood and IVs about ten times during that hospital stay because my veins would either not produce any blood or they were too fragile for the strong antibiotics. By the third day at the hospital, none of my veins were strong enough for a simple IV, so I was switched to the PICC line.

The PICC line was my savior. I never thought I would love something attached to a needle as much as I loved that PICC line.

“PICC” stands for peripherally inserted central catheter. It is a small needle attached to a port that is inserted into a deep vein (in my case, in my upper right arm). It’s then fished through to another vein close to the heart. A PICC line can stay in place for weeks without being changed, and it can be used to draw blood and to administer fluids such as antibiotics. For those of you who know my family, when my dad was at UCSF in 2010/2011 with a foot infection, he received routine antibiotic infusions through a PICC line.

An illustration of how a PICC line works, from Macmillan Cancer Support’s website http://www.macmillan.org.uk.

Once my PICC line was inserted in April, the rest of my hospital stay was a breeze. I didn’t feel any burning from the antibiotics and no one had to poke me in the middle of the night for blood tests.

This time around, my mom and I have been adamant that I receive a PICC line from the start. I know Dr. Festekjian is going to put me on IV antibiotics as a precaution, and I know I am going to be put under anesthesia. Both of those things mean needles. Any needle poke runs the risk of infection; with my non-compliant veins and history of infection, why would I want to take any chances? PICC line, here I come!

In terms of the actual tissue expander replacement surgery, I anticipate that it will be pretty easy. It’s performed in UCLA’s outpatient building, which already makes it seem more minor. There’s a good chance I will stay in the hospital overnight just to be safe, which is fine with me. And I only plan on taking one week off from work, as opposed to the three I took after my mastectomy surgery in March.

To be honest, the biggest concern I have is what I’ll look like with my newly-inserted tissue expander. I’ve really adjusted to having my cotton prosthesis and Waterproof Falsie; they are the perfect size to match the 550 cc tissue expander on the right side! But when Dr. Festekjian puts the new tissue expander in the left side, he will probably only fill it up to about 200 ccs; tiny in comparison to the other one!

Does anyone have any suggestions for what I can do to not look lopsided? There will probably be at least one month of unevenness; I don’t expect to start my saline fills until two weeks after this surgery. And even when the fills do start, it will take a few sessions before my left tissue expander is equal to my right expander.

Okay, nothing could be more lopsided than this: tissue expander on the right side, nothing but chest wall on the left!

I’d love to hear what people think. My initial thought is to use socks or something to fill empty bra space. Anyone else have a better idea?!

I expect to post an update on Monday or Tuesday following my surgery, so be on the lookout for that. And all positive vibes and thoughts are appreciated as I get ready for Monday! Thank you. =)

 

I think it’s time to deal with the big bad question:

Why? Why would I have a mastectomy, as a perfectly healthy 21-year-old?

I’ve been avoiding this post for a while–not because I didn’t want to answer the question, but because I didn’t know where it would belong. It seems like something I should have written about a long time ago, before my surgery. And I did write about it, for myself, to justify the decision. But now I want to “go public” with my thought process, because people are right: removing all of my breast tissue at a young age is absolutely ludicrous.

This time last year I was driving home from work, anxiously awaiting the debauchery that would be the following evening: my 21st birthday. At that moment, I was just a normal college student. I was so excited to finally be free of my crappy fake ID, but before that magical first legal drink, I would have to make sure my camera was charged, my hair was straight, and my clutch was packed with the necessary lip glosses and eyeliners.

Celebrating my 21st birthday last April. From left to right: Marissa, Danielle, Rachel, Katy.

Six months later, everything was different. I felt nothing like that girl who was excited to go out to bars with her sorority sisters to celebrate another year. My BRCA test results were in, and it seemed that I would never be the same again.

I was suddenly resentful of my body. I felt so betrayed! My relationship with my body had never been perfect; there were certainly a wonky few years during high school. But since starting college, I’d finally become comfortable being me. And then, when things seemed to be going great in life, my body just threw me under the bus. “Oh hey! You’re gonna get cancer!” No, I guess it wasn’t my body–it was my DNA. That’s what made it even worse, at least at the time: the very essence of my being was flawed.

Oh no…not an awkward photo from high school!

No one could see that I was broken, but I knew it. I just didn’t know when it (cancer) was going to strike. My breasts were–you guessed it–ticking time bombs (oh so that’s where the name comes from!) Every time I caught a glimpse of them in the mirror while changing, I shuddered. I hated them. I didn’t trust them. What if there was a cancerous cell lurking in them already?

The BRCA test results felt like a death sentence. But maybe that’s the wrong way to describe it…I never thought I was going to die…but I never thought I was going to live, either–at least not happily and cancer-free. It was a death sentence for my normal, relatively simple life. It was a sentence for cancer. I read up on the numbers, and I knew how BRCA had played out in my own life: my mom had been diagnosed with breast cancer twice. The fact that I, too, was BRCA positive meant that I was going to get cancer. There wasn’t hope that it would skip me or that I could diet and exercise my way out of it. No. If I lived long enough and had enough breast tissue, I was going to get breast cancer.

These two thoughts–resentment toward my body and belief that I would eventually have cancer–were what drove me to my decision to have a prophylactic mastectomy.

I really hate being depressed. I hate hating myself. I wanted, so badly, to get back on track with my self-esteem and self-image. You can only truly love someone if you love yourself first, and I really hated myself last October when I found out about my BRCA mutation. Imagine how poor Bryce felt?

It’s true that I could have waited one year, five years, ten years–any period of time, perhaps–before having a mastectomy. And I think that if I had waited a few years, I still would have been doing it by choice, not by necessity. But I know that I would have felt so much self-loathing during that time. I was not prepared for those feelings. The drama of my teenage insecurities was hard enough; I did not want to repeat any of that. The sooner I got on with my mastectomy, the sooner I would have reconstruction. The sooner I would have reconstruction, the sooner I would love my breasts–and myself–again.

A mastectomy and reconstruction would give back what the BRCA mutation had taken: my self-esteem. But it would also give me peace of mind. Many women who are at high-risk for breast cancer opt for the surveillance option instead of surgery. They are diligent about their mammograms, MRIs, and breast exams and join special hospital programs for high-risk women.

This was certainly a choice I could have made, but it was too passive. Yes, I could screen the heck out of my breasts, but that wouldn’t stop a tumor from forming. And let me tell you: I’m a worrier. If something hurts (my eyes, my ears, the space between my toes), I go to the webMD Symptom Checker and diagnose myself (and it’s always terminal). Imagine me at a yearly MRI or mammogram? I just know I would be freaked out for days waiting for the results.

Remember when I thought I had esophagus cancer? Thanks, webMD Symptom Checker.

And the way I saw it–again, based on the numbers–was that eventually one of those MRIs or mammograms would come back with a spot. I would get the spot biopsied, and then a doctor would tell me that I have cancer. The doctor, knowing that I have a BRCA mutation, would then strongly suggest a double mastectomy, followed by chemotherapy and maybe radiation.

I would not get to pick when this happened. Cancer would not care if I had a career and children to think of; it would just strike. I would have to halt my life for surgery and a very difficult treatment; I would have to explain to my family what was wrong with me. My mom didn’t get to pick when she was diagnosed with breast cancer. It just happened to her, and at a really sucky time.

When I found out that I had a BRCA mutation, I was given a choice–the choice my mother never had. I could choose when my life would be inconvenienced. I could decide if I wanted it to be because of cancer, or because of me. I decided to stop my life for a few weeks because of me–because of a decision I made myself. If I had decided against a prophylactic mastectomy, I would have to have one at some point, anyway…and it wouldn’t be prophylactic anymore. It would be because I had breast cancer.

My brother Michael put it best in an email to me a few days before my surgery: “Doing this [a mastectomy], or not doing this, are each big decisions.  One choice is potentially fatal, and one is just fucked up.  You chose fucked up, which is clearly the right choice.”

He’s right. It is “fucked up.” It’s ridiculous. It’s upsetting. I was distraught for weeks before my mastectomy, and sometimes now, even after, I get angry and sad and insecure. But it was the right choice. I didn’t cause the stop codon that screwed up my BRCA2 gene. Nothing I ate, drank, said, watched or smelled affected it in any way; it just happened. I couldn’t control it. But now I am in control of my body and health again, and I have my prophylactic mastectomy to thank for that.

I know blogs are supposed to be concise…and that certainly wasn’t. But I hope it made sense. I hope that at least one person out there understands my decision a bit more…I hope it doesn’t seem so crazy and extreme.

I want YOU to get tested for the BRCA mutation in 20 years so you can take control of your health again, future self!

Tomorrow’s my 22nd birthday, and I’ve given myself the gift of life! So cheesy, and so true.

 

Dear Jackson-Pratt drains,

I hate you.

It’s been one week exactly since my surgery, and I can say with complete confidence right now that I hate these stupid drains.

But hey–if that’s the biggest complaint I have, maybe things aren’t so bad.

What bugs about these drains is that they’re just so…limiting. For those who aren’t familiar with the nuanced terms of mastectomy, Jackson-Pratt drains are used to remove excess fluid buildup from the surgical site. On each side of my chest, about halfway in between my armpits and my hips, I have a plastic tube sewn into me. The tube attaches at the bottom to a plastic bulb that uses suction to “swallow” liquid. This is the drain.

JP drain diagram from drugs.com
This is not exactly where mine are located, but it’s a decent illustration.

Every twelve hours, I empty each drain and measure how much fluid is expelled. Once I am below 30 ccs of fluid per 24 hour period, I will be able to have the drains removed. Right now I’m at about 80 ccs per 24 hour period…so I’ve got a while to go . =(

I thought that emptying the drains would be a tedious, disgusting task. The fluid is pretty gnarly: it’s a translucent red/orange and I can see when blood clots pass through. But no, emptying them is really easy and I don’t get grossed out.

They are just annoying to live with! You can’t hide them. I have two mastectomy bras, soft bras that use hook-and-eyes to snap closed in front. Each bra has areas for attachable drain pockets, little white pockets with velcro where I put the drains. At home I usually walk around wearing just the mastectomy bra and drain pockets, or I wear a zip-up or button-up jacket with pockets and stick the drains in the pockets.

It’s going out that’s difficult. Yesterday I decided I wanted to go for a walk–but what do I wear? Do I wear a jacket and just deal with the fact that fellow walkers and bikers will think I’m some kind of mutant with bloody tubes running out of my body? Do I stuff the mastectomy bra and drains into a zip-up jacket and risk looking like a pregnant teenager? Do I wear an oversized flannel shirt and look like a hobo who hasn’t showered in a week? (Oh wait…that last part about showering is true.)

Yesterday, before my walk. I opted for the mutant alien look. P.S. look at how flat-chested I am LOL boobs.

That’s another downside. I can’t shower with these things in. Water is not supposed to get near the drain site to avoid infection. MEH. I’ve had my hair washed and I’ve been using nifty little pre-soaped disposable wash clothes to keep clean. (FYI, the Horn residence is pretty much its own pharmacy. Between me, my mom, my dad, and my diabetic dog, we’ve got every drug, gauze pad and bandage, and medical instrument you could ever need.)

I’m also scared I am going to pull them out in my sleep. For some reason, the drain on the right is different than the one on the left: the tube is not attached to the bulb with anything other than pressure from the suctioning. On the left, there is a nifty little device that keeps the two attached. Already once the tube on the right has become disconnected from its bulb. Nothing big happened–I realized it immediately and put it back together. But I’m scared that it’ll come out in my sleep and leak all over my nice clean sheets.

Leaving you with that nice image and my fears, I am going to attempt to go back to sleep. In a few hours I’ll post a really informative, well-rounded “One week out” post and we can all forget about my hatred for drains.