This blog's purpose is to chronicle my journey, which I think will be a means of catharsis for me, but the main reason I'm publishing it online is in hopes that it will raise BRCA genetic testing awareness and maybe even help others along their own journey. When it came time to make decisions regarding my medical care, I found that the blogs of other women in similar circumstances were the most helpful for me.

Thursday, August 22, 2013

Anniversaries, Updates, & Fat

True story: in our high school US History class, our teacher would have us spend the first 5 minutes of each class writing in a journal. It didn't have to be US history-related, we just had to date each entry and write for 5 solid minutes, about anything. I'm not really sure what the educational purpose of this assignment was...Honestly I think it was mainly to keep us out of his hair while he prepared himself for the day's lesson plan. (No peanut gallery comments on the California school system please! lol). Anyway, the point of this story was, I failed that assignment. At the end of the school year I turned in a mostly empty journal. I couldn't even be counted on to write for 5 minutes a day, 5 days a week consistently. Clearly, as evidence by the lack of posts, some things never change. :)

There really hadn't been too much in the way of updates since my last post though, in my defense. My summer has been blissfully uneventful.

A few new developments have come up though. I realize, as summer starts winding to a close, I'm coming up to the one year anniversary of my BRCA testing. It seems so surreal! I remember looking at the test kit sitting on the passenger seat of my car and putting it off because I knew once I took the test, my whole world would change. I was right. Everything DID change. Some good, some bad. In the span of a little under a year, I've found out who I can count on and who I can't. I've found out how much pain I can tolerate. I gained a cup size and lost a part of my femininity that I will never get back. Before my mastectomy, I always told myself I'd never breast feed. It seemed ridiculous. Your partner can't pull equal weight on the feedings, you get sore, you leak...It didn't seem important. Now, I mourn not having that option. I also mourn the loss of feeling in my breasts and nipples, which, I never really paid too much attention to prior to my mastectomy. (I know this may be TMI but this whole blog is TMI so I'm not going to apologize.) It's also a bit daunting to know that my battle is only half way fought. While I am now celebrating the relief of knowing my chances of getting breast cancer are slim to none, I'm also dealing with the fact that my lifetime ovarian cancer risk is still 40 - 60%. For some one who's already a self-admitted hypochondriac, this is a tough pill to swallow. Pun intended. :).

So where does this all put me now? Well, the last surgery on my breasts will actually be my second to last. I'll be going under the knife again in October for some minor alterations. Basically my plastic surgeon will be performing a teensy bit of liposuction on my tummy and injecting the fat into my breast over my implants to cover up a little rippling. I can't say that I'm bummed about the free lipo. :) If only I could convince him to harvest 5 more pounds of it for posterity's sake. Haha!

Also, starting on my 30th birthday I get alien probed (trans-vaginal ultrasound) and poked with a needle (CA-125- a test that measures the amount of cancer antigens in your blood) every 6 months until I decide to have an oophorectomy (ovary removal surgery). Haha! Yay 30 sounds SO exciting! My gynecologist has also put me on a low dosage of birth control (double yay) to help lower my risk of ovarian cancer until I am ready to begin trying to become pregnant.

Unfortunately, TVUs and the CA-125 test haven't proven to be very effective at detecting early stage ovarian cancer. While they are better than nothing, the most effective way of decreasing my risk is with an oophorectomy, which is suggested by 35 for women at high risk. I'm not too sad to let the twins go to be honest. Those two have been nothing but trouble since puberty! I'd be ready to wish them bon voyage right away if it weren't for needing those suckers to procreate. So the two little ticking time bombs will just have to stay for a while..BUT they shouldn't make themselves TOO comfortable.

I'm not going to set myself up for failure and promise to be better about posting but I will post in November after my birthday probing. LOL!

Wednesday, May 15, 2013

Final Surgery

I had my final surgery on Monday! Aside from a follow-up appointment on Friday, I am completely done lowering my breast cancer risk from a lifetime percent of 75% to 5%! I'm just so relieved. It's hard to put into words how I feel.

Let's talk about the results from Monday's surgery instead. This is something I know how to put into words. I showed up for surgery on Monday at 7:15AM and I was tired. I waited in the outpatient waiting room for about an hour and a half. Most of the time I was asleep on my husband's shoulder. I stayed up way too late the night before. Finally they called me in and the prep time was very quick. My doctor came in, drew two arrows on my chest pointing down to my breasts. In case they forget they're operating on my breasts??? The anesthesiologist came to my little curtained off room and asked me if I wanted a cocktail to relax me before they wheeled me into the OR. What kind of question is that? OF COURSE I WANT A COCKTAIL! Into my IV goes that delicious blend of noodle-body-inducing drugs and off I go into the OR. My doctor comes to me and tells me they might have to use saline implants instead of the original silicon gel implants we had discussed for now and that they'd swap them out at a later time for my permanent silicon implants. Huh?!?! He explained why but I was in la-la-land! I wish my doctor would have explained this to me prior to the "relaxation cocktail" but oh well. I say okay and then I fall asleep. Apparently I didn't need anesthesia to fall asleep. The administered that after I was already out. I woke up what seemed two minutes later and I was done. They let me fall back asleep and I slept in the recovery room for about an hour before they let my mom and husband come into the room. Blessed nurses. I don't really remember anything that happened during the time I woke up right after surgery and the time I woke up to change to go home. I asked some one, I can't remember who, whether or not they used silicon or saline implants and I was informed they ended up using silicon implants. Hooray! No more replacement surgeries! Also, I was told I would have to have drain tubes, so of course the second question I ask was "drain tubes?" and to my surprise, there were none! Apparently they weren't needed!

The nurse got me dressed and told me to eat bland food for 24 hours. There went my plans for sushi.

In the car with my husband, he told me that Dr J. filled them in on my progress once he had finished surgery. Josh (my husband) told me that Dr J. seemed to really focus on wanting to make sure I was happy. He said he brought it up several times in their conversation.

When we got home, the first thing I did was take off my top. I wanted to see the new girls right away. Holy smokes! I have cleavage and they are DEFINITELY bigger than they were prior to the day's surgery.  I went into surgery thinking I was going to come out smaller than the expander size due to the popped expander snafu or at least the same size as I currently was but I am pretty darn voluptuous in the chest area. As for what to expect pain-wise after a replacement surgery, I didn't experience too much. It was maybe a 2 when I wasn't moving around and a 4 when I did. Nothing a vicodin couldn't handle. The only pain I was experiencing was from the internal incision my doctor made on the inside crease of each breast. During my expander surgery, my PS had stitched up the crease to keep the expanders from bottoming out, so during the replacement surgery he cut that stitched up area. Other than that, the incision on each side of my breasts itched and that was about it. Today I'm experiencing some soreness and swelling but luckily I am working from home today so not a lot of moving.

I am so pleased with the outcome. I couldn't be happier!

What's next? Well next comes the more complicated part. BRCA 1 gene mutation also means that I'm at a higher risk of ovarian cancer and also at risk of contracting ovarian cancer at a young age. Testing begins at 30 and my doctors have recommended an oophorectomy by the time I'm 35. As most of you know, I don't have kids and it's definitely something my husband and I are planning on. I worry that if we wait to have kids and wait to get my ovaries removed, I might be racing the clock. There is no history of ovarian cancer in my family but researchers just don't know enough on whether or not that matters. My next few posts might not come for a while, but at the moment, I'm thinking they'll be centered around decisions regarding children and my ovaries. I have plans to talk to my geneticist about timing and statistics on ovarian cancer age diagnoses. So stick around, there's more to come!

Monday, April 29, 2013

Crow Is Not So Tasty

Two posts in one day! I guess I'm making up for the gaps!

In reality, I've been struggling with where I wanted this blog to go, and so I turned to a close friend for advice. She's a fellow blogger and really just an all around savvy girl. J, if you're reading this, I suspect you already know I'm talking about you. ;) Anyway she advised me to surf other blogs for ideas/inspiration. So, feeling motivated today, I did just that. I couldn't be more thankful to J for that advice.

In my search through blogs of other BRCA positive women, I was led to a blog of a woman who was not BRCA+. As the title of this post suggest, I'm eating crow. How is this relevant? Well, my previous post today was pretty self indulgent and I feel pretty terrible about it. Along my journey there have been moments where I'm utterly and completely humbled. Watching my sister L take her own journey down a similar path is one of those moments. Talking to my Boob Buddy (my friend I met on the FORCE FB page, <3 her) is another. Reading this woman's blog (I'll link below) was not only a humbling moment but a wake up call. As I said before, she wasn't BRCA+ but she was tested for it due to the fact that she received a breast cancer diagnosis at the age of 25. I won't tell the whole story, as it's not my story to tell. I'd rather you read it through her blog. I will say though that the battles she fights would have had me curled up in fetal position, yet her blog posts are so upbeat and positive. "Breast cancer at 25? No big deal!" "Lose all my hair? Hair grows back!" I'm not exaggerating. She's amazing.

One of her posts particularly stands out to me. She mentions the offers of help from friends and family. She says she's not really sure how they can help her at the moment. Then she says for now, she hopes people will look into their own lives and figure out how they can better "Live Sincerely." That hits me hard. No more wallowing and self-pity for me. I'm promising to myself and to everyone reading this blog that I'm going to be more positive. I'm going to focus on the blessings I have versus the things taken away from me. I can't guarantee that there won't be setbacks but I vow to pick myself up from the falls and continue back towards a path of positivity and enjoying life.

The link as promised:

One Poke Backwards **Warning: Semi-Graphic Picture (don't click if you don't like needles or are shocked by a little skin)**

I had what I thought would be my final fill (more to come on that later) on March 27th and my replacement surgery was scheduled for May 15th. To the right is a picture one of the lovely PAs took while my plastic surgeon gave me my last fill. After my fill I was excited about the size of my expanders. They were pretty high up and looked HUGE! I was happy as a clam!

Then once they dropped and started looking more natural, I grew unsure about the size I had been expanded to. I think, with my surgery date rapidly approaching, I was second guessing myself. The size I woke up with after surgery was the size I'd be stuck with for the rest of my life. It's a big commitment and let's just say I'm very indecisive. I did know however, that I'd be happier with too big rather than too small (within a reasonable margin of course). So I emailed my doctor with my uncertainty, and he, being the people pleaser that he is, asked me to come in for another consult. This was Friday. I came in, we spoke, and I asked him whether or not the implants would have the same projection. He said they'd be pretty comparable to my expanders. I said my chest didn't look like I pictured, as in, not much bigger than my original size. Okay folks, moment of brutal honesty: I wore padded bras before my mastectomy! I kind of had to fill out shirts and plus not many bras come without padding these days. I think this is where the problem lay. With a shirt on, I felt that I looked the same size. My doctor gave me the crazy eye when I told him there wasn't much difference, but he begrudgingly agreed to another fill. He had the nurse come in to do my for reals this time "last fill." What happens next is an accident and I don't blame my nurse at all. She had done 90 percent of my fills with no problem.

All through my fill process, my left expander port was a pain in the butt. It migrated all over the place. It was never in the same spot twice. My nurse began trying to find the port with a small magnet. It didn't work. She got a bigger magnet and found what she thought was my port. When she stuck the needle in, it hurt. Fills are not supposed to hurt. She pulled the needle out right away as she seemed to know she hadn't hit my port. When she pulled the needle out, clear fluid rushed out. She didn't seem concerned, so I wasn't concerned. She looked again and found my port almost in my armpit! The original poke went in on the top and center. Anyway, she put 50CCs in each expander and sent me off. I was happy again. I LOVED my new size.

I noticed later on that evening that my left breast seemed a little softer than normal. When I say "softer" I mean, not rock hard. I thought it was odd but I thought maybe it was because that wily little expander was moving around. I again, wasn't too concerned, until the next morning when I noticed my left breast was about 1/3 smaller than the right. That's when I realized my expander was punctured.

I've consulted with my doctor and now I have to get 50CCs removed from the right expander to achieve symmetry. There's also the chance that the skin around my left expander will shrink before my surgery. So, not only am I not 50CCs bigger, I might wake up from surgery smaller than I was before surgery. *sigh* I feel like this is my karmic retribution for being vain and being wishy-washy. I should have been focused on the reason that I started this journey. To prolong my life. Not to get a boob job. I'm disappointed but I'm trying to focus on the trade-off: having smaller breasts than I'd hoped for but not worrying about breast cancer and all that comes with it.

My mantra going forward- Trust my instinct, don't second guess yourself, and focus on the true outcome of my battles.


Thursday, February 28, 2013

Tips & Checklist for Home Recovery

I've decided to share some of the tips and things that helped me throughout my recovery. I've already covered the hospital stay so here are the things I recommend for recovering while you're at home.

  • Before Surgery
    • Recovery Area (guest bedroom, couch, etc)
      • Clean sheets
      • LOTS of pillows, at least 2 to prop your head up if not more, and one for each arm. I also had one under my legs
      • Extra blankets (unless your surgery is in the summer)
      • Set up 12 bottles of water next to your bed. You should be drinking a lot of water anyway but you will need these to take your pills
      • Speaking of pills, have your pain medications filled prior to your surgery, besides pain meds you will need the following placed by your bedside:
        • Benedryl (you will be itchy from your pain meds)
        • Stool softener (constipation from pain meds is a pain in the a**, pun intended)
        • Meds for nausea if you think your pain meds will make you nauseous 
        • Daily meds & vitamins/supplements
      • Crackers - in the first few days of recovery I would wake up early before breakfast time and need to take my meds, it was nice to be able to eat a couple so my tummy wasn't empty and then I could fall right back to sleep.
      • Granola bar or something to snack on during the day when you don't feel like eating a whole meal
      • Cell phone/laptop/tablet chargers- hook them up ahead of time so that the cord reaches your nightstand or whatever tabletop you have next to your sleeping area.
      • Reading material- laptops, tablets, magazines, books, whatever floats your boat
      • Baby wipes - nice for a quick clean up in the no showering phase (if you aren't allowed to shower)
      • Breath mints - in case you get unexpected visitors before you can brush
      • Hair brush and hair ties
      • A couple sets of pajamas, underwear, and socks
      • Slippers and a robe
  • Tips and Pointers
    • Have some prune juice in your fridge in case you don't feel like going full on stool softener
    • Find a series to watch on netflix or ondemand, you will have a lot of down time
    • The first couple days after surgery, the last thing I wanted was a meal for breakfast. Smoothies were the key. They also helped soothe my sister L's throat after her surgery. Her throat was very raw from her breathing tube.
    • Check with your doctor first but, I utilized both an ice pack and a heating pad after my surgery for swelling and for that "cold feeling" in my chest I couldn't shake.
    • Do NOT reach for things. Even if it seems like it's close enough. Ask for help or walk over to what you need. Reaching can lead to trouble: stitches popping, incisions opening, strained muscles, etc
    • If you're not allowed to shower until your tubes are out, schedule a wash & blow dry at your local salon or even supercuts. You will feel SO much better with your hair washed
    • On the topic of hair, I have longish hair that mats if I lay in bed too long. Braids helped with this. It also helped my hair not feel dirty. If you have short hair this obviously isn't applicable.
Well that's it! Hope my ideas and lists are helpful! Remember it's different for everyone though. Think of what your likes/dislikes are. What will soothe you and make you comfortable after surgery? What will make things easiest on you?

<3 Rosanna

Wednesday, February 27, 2013

Happy Update

Looking back through my last few posts, I see a trend in how I've thought about my recovery.  At first my recovery was easy and almost fun with pain killers taking away all the pain and people doting on me, but now I'm feeling defeated and sorry for myself.  As I type that, I realize how disgusting that sounds, but I promised I would be honest in this blog. The honest dirty truth: the surgery and week after had been easy for me. My pain was easily manageable, moreso than than my period cramps. I was getting meals cooked for me, people were pampering me, and I wasn't having to work at all. It was easy to be optimistic on how I was recovering and enjoy the doting. A couple weeks after surgery though, I felt like I hit a wall. I was supposed to be nearing the end of my recovery stage. The friends and family who haven't gone through it are expecting me to be mostly recovered. More importantly, this is what I expected too! But my pain seemed to be getting worse in my right breast and my energy wasn't back to what it was, and this made me regress emotionally too. Why had I not knocked out the healing from this surgery? Why am I still sleeping till 12pm and needing naps? My sister L encouraged me to go easy on myself. She made me feel like less of a wimp, but that is still what I felt like. A wimp and a fake. Tons of women who actually HAVE breast cancer go through this surgery and worse. Then they have to pick up their lives. Here I was, having this minimally invasive surgery (remember I had over the muscle reconstruction) and Im boo-hooing about some pain in my breast almost 4 weeks out.

So, how is this a happy update? Well this morning I was feeling pretty sorry for myself. My husband has been urging me to wake up earlier than my normal 12pm to start preparing for my return to work on Monday. I woke up at 10am feeling extremely sluggish. I was dragging. I decided though that I had to put my body in motion. I gave myself a little pep talk and turned up my country music. I showered, put my hair up, and put make-up on for the first time since surgery. I even put clothes in the wash (thats as far as they made it so far!). I was proud of my success.

Then off to a visit with my nurse practitioner who is taking over my fills while my PS is in Tel Aviv! My PS hadn't left on his trip yet so I told my NP about the ongoing pain in my right breast, which she was familiar with. She did another ultrasound and brought my PS in. He explained that my internal stitches were right where my pain was. One seemed to be coming un-done. He recommended heat to help dissolve the stitches. Both the NP and my PS reminded me, I'd never had surgery before. It was normal to feel exhausted. My body will recover at it's own pace. I felt relieved. I wasn't a wimp. He even suggested I take one more week off of work, since I had been in pain and would quite possible be in pain for a little while longer. He had the NP write me a note to extend my LOA and off he went. He's really great! The NP gave me a fill and she talked about the seroma above my expander on my right breast. She explained that if when she pulled the fill needle out, yellow fluid came out, she would drain the seroma. Of course, that's what happened. So she took another comically large needle and extracted the fluid. 200 CCs of it. That's an entire cup size. I was instantly granted relief on the underside of my breast. We theorized that the seroma was causing extra pressure against the stitches.

My lesson of the day: be gentle on yourself. No surgery is "easy" on your body. Just because one person heals one way, doesn't mean I have to heal the exact same way or pace. Stop being your biggest critic and be your biggest fan. And realize that the doting you get from friends and family may not line up exactly with the hardest parts of your recovery.

Monday, February 25, 2013

Trail Map Notes & Packing List

I had a bit of a set back this past week. I developed a seroma in my right breast, which is basically a fluid filled sack. Fluid build up is the reason why you get drain tubes when you have a mastectomy. Last Wed my left drain tube output was quite low and the right was on it's way down, just not as low as the left. My very compassionate PS, didn't want me to have to suffer with the drain tubes for one more whole week. Especially since I have one week left till I return to work. So he removed both and gave me a fill.

Thursday afternoon came and I felt sharp stabbing pains in what I thought was the drain tube site. Just a teensy little hole but it's probably been the most painful part of this whole surgery. Keep in mind my surgery was less invasive than the average "partial under the muscle surgery". It was excruciating pain. The Norco and ibuprofin weren't touching my pain. I couldn't believe this small little blip of a hole was causing such pain. By Friday morning I had a low grade fever. Which meany there was an infection of some sort. At this point, because it hurt to make any motions on my right side, I had been cradling my right arm. My shoulder and muscles became stiff and I lost a lot of range of motion. I was miserable. I called the nurse and they had me come in for an appt that same day. My mom came and picked me up from my house, as my husband was in a meeting. I was crying the entire time while I waited for her. That's how painful and desperate I felt. Long story short, they discovered with an ultrasound that I had fluid build up around my right expander and that's what was causing all this pain. With the fever, they suspected it might be infected. My drain site was clean as a whistle so it wasn't that. I guess there are a few things I want others, who are or will be going through this situation, to take out of this. These are things no one told me and I didn't really get a feel for from other blogs. Not that it's anyone's fault. It's just different for each person but I'm going to put my knowledge out there in case there's some one else that can use this info:

  1. Expectations
    1. This is not always a "you only get better every day" battle. Sometimes you take 3 steps forward and then you take 2 backwards. This is huge. You'll get there eventually just as I will but don't worry if 2 days after your surgery you felt like you could do cartwheels and then a week later you want to curl into a ball and die. It'll get better, just be prepared to take some detours.
    2. Seromas - Do not push your doctor to remove your drain tubes before they are ready. I know drain tubes are painful and annoying. But you know whats worse? An infected seroma. That fluid has to go somewhere if there's large build ups of it. If it's not going out of your tubes, where's it going? No where, it just hangs out in your breast.
    3. The hyper sensitivity- for me it's my upper chest, for my friend J it's her armpits. It is very weird. Feels almost like a sunburn. It's totally normal though. Ask your doctor on how to work on this.
    4. Nipple Saving Mastectomies- even though they told you your nipple will survive after surgery, there's always the chance that it MAY NOT. However, if it turns black and feels sort of scaley, don't panic. In my case that black dead skin peeled off. Same thing for my friend J. No one told me that. I was pretty sure my nips were goners. Keep your PS in the loop. And DO NOT PEEL THE SKIN. Since women rarely have any sensation in their nipples right after surgery, you won't know when you're peeling too far. The blackened skin will peel off on its own when its ready and you should have pretty pink new skin under there. If you peel, it'll bleed or ooze and you'll scab again.
    5. I don't know if this is just a "me" case but...I had hot and cold flashes after my surgery. I'd randomly get hot flashes in the beginning. Now I'm getting this feeling of deep coldness in my chest. Its a cold I can't touch. I put on layers and I just get sweaty but I still feel cold deep in my chest bones. It goes away but no one told me that might happen!
  2. Surgery Bag Packing
    1. Tube top dress- Number one necessity for recovering in the hospital. Makes it easy to pull down for the doc to check out your incisions, and pull up to pee. Seriously. You NEED one of these. Forget PJs. Forget the hospital gown. Tube top dress (You can find them in the swimsuit cover up section)
    2. Sleep mask & earplugs- ESSENTIAL! 'Nuff said.
    3. Lip balm- your lips are parched after not drinking water and having that tube in your mouth
    4. Natural deodorant- this isn't for everyone but since I couldnt wear any to surgery I begged my husband to be prepared to swipe me with some the minute I got out of surgery.
    5. Face wipes- they're nice to wipe your face, clean off surgical tape gunk, wipe off iodine, etc
    6. Slippers & socks- get hard sole slippers that you can slip on to trudge to the bathroom. As for socks, I'd rather have my own socks than the ones they give you in the hospital
    7. Undies- I put them on but many women preferred to go commando. This is for you to decide
    8. Yoga hair ties and a brush- pigtail braids were the most comfortable for me
    9. Snacks- By the time I got out of surgery and they deemed me eligible for solid foods, dinner time was long gone. My best friend's saintly wonderful mother baked me and my husby THE BEST COOKIES ever!!! They had oatmeal and flax in them so they were almost like energy bars. Especially since I had not eaten for 8 hours, they tasted like mana from the gods. (They're mana from the gods even when you're full though fyi)
    10. Toothbrush and toothpaste
    11. Phone charger and phone ( I also brought my kindle, which probably wasn't necessary because I just slept a lot)
Next post I'll focus on preparing your home and yourself for home recovery.

<3 Rosanna