A Lot Can Change in a Year: My Foob-a-versary

You know that song from Rent “five hundred sixty five thousand six hundred minutes” the one that talks about the ways to measure a year? That’s what I keep thinking of as I approach the 1 year mark from my preventative double mastectomy. Except my version of the song includes five surgeries, two fat grafting, six doctors, forty eggs, two hundred doctor visits. Because for me, the year was marked more by medical events than cups of coffee (although there were a lot of those too). But really, since September 25th of last year I’ve had a double mastectomy, reconstruction and fat grafting, revision and fat grafting, 2 weeks worth of fertility shots, and two egg retrieval procedures, and countless ultrasounds, blood draws and doctor visits. It has been the year of boobs, ovaries, boobs, ovaries and looking back it’s kind of hard to wrap my head around. And that’s not even taking into account my mom’s 1st go at ovarian cancer brief 6 months of remission and now her re-diagnosis with OC and return to chemo.

You see, when I entered the hospital September 25, 2014, to voluntarily remove my healthy breast in an effort to dodge the looming threat of breast cancer running through my DNA, I knew I was signing up to lose an important physical and emotional part of my identity. What I didn’t know was how much more I would lose during the course of the year or how much I would gain.

Let’s talk losses first. I knew the surgery would be painful. It was. But pain is temporary.  At this point last year, what I don’t think I really knew was how hard it would be to actually lose my breast. To wake up one day and no longer feel parts of them and to have them no longer look like “mine.” Conceptually I knew I would face that loss, but I don’t think there was ever a way to truly feel the loss until it happened. 363 days after my mastectomy and I still miss my original breasts. Now, don’t get me wrong, I’d STILL HAVE THE SURGERY and I have NO REGRETS.

Would, Should, Did 9/25/14

Would, Should, and Did!  But I still miss my breast. I loved the originals. I loved the way they looked, I loved the way they felt, and I loved the way they made me feel about my body. Waking us these days with (I’ll admit) some damn good looking reconstructed breasts isn’t the same as before. Yeah, they look great, but to my eyes the look different they look like someone else’s boobs.  And then there is the whole part about feeling. I have some sensation, but not much. Last week, a few hours after I had finished some reading I looked down and saw I had a highlighter in between my boobs. I’m not sure what’s more odd, the fact that I didn’t realize I had a highlighter between my boobs or that somehow I subconsciously must have put a highlighter in my shirt…. But funny stories aside, it’s emotionally still a hard thing to mourn the loss of sensation. Especially in a part of your body that you want to feel.

Aside from my physical breast I also lost a year of grad school. I was all set to return to school to pursue a PhD and the knowledge of BRCA1 put the breaks on that. I knew I couldn’t enter a 5-year intensive program and have to worry about a ridiculously high risk of breast cancer so the PhD went on hold and I had the mastectomy and then a looooong and complicated recovery followed by two more breast surgeries. All in all, it set me back a year and that sucked. Better than cancer, but still sucked.

Then there is the topic of relationships. I’ve lost a few really special friendships this year. My health and surgeries paired with my mom’s cancer treatments meant I had to really rely on my friends and coworkers to help me and be my family. Most of them did just that and so, so much! Some people I’d previously had more of an acquaintance-type friendships with pre-surgery were extraordinary comforts and support and are now among those I consider close friends. But the ones that I lost felt especially painful. They were people I thought I would always have in my life and whom I thought I had been there for in their tough times. But it was some of these people who would say and behave in the most insensitive ways and I think that’s hard for anyone to understand, much less someone who goes through something so life-altering as BRCA, a mastectomy, and a parent with cancer.

This leads to my gains. I have gained the MOST amazing set of friends. Strong, fierce, generous, loving, and hilarious women who have stood beside me while I faced my BRCA surgeries and who have allowed me to stand beside them as they have faced theirs. This mutation wrecks havoc on your breast and your ovaries, but it also runs through the veins of some of the most incredible women I know. Without them I ‘m not sure how much I could have taken this year. I love these women with my whole heart and feel so lucky to have found them.

Yes, they're fake. The real ones would have killed me

I think the most important thing that I gained this year though is a sense of empowerment and pure relief. I never doubted that I was a strong person, but I never would have guessed that I would choose to save my own life by removing my breast. The power that comes with taking away cancer’s ability to attack my breast and preparing to remove that risk from my ovaries too gives me a sense of empowerment that I never knew I could have. On top of that, my frozen eggs now give me the chance to screen BRCA out of my children’s genes. And nothing makes me feel like I have control over BRCA more than knowing it stops with my generation does! My mom didn’t have a heads-up on the BRCA1 thing and ovarian cancer will probably steal her life one day, I will elect to remove my breast and ovaries in my 30’s to prevent cancer, but my children will never, ever have to make the choice to remove health body parts or wait for cancer. And knowing that I control breast cancer’s impact on me and my future children is worth all the “real” boobs in the world.

Happy I Saved My Own Life Anniversary to Me!

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The infamous “one and done”

recovery reality

When I first scheduled my preventative double mastectomy I had this grand delusion that I’d have the mastectomy in September, exchange early December, and be back to ‘normal’ mid January. That kind of a turn around from this intense of a surgery may happen for some women, but not many that I know of and certainly not me!  ++++Per usual, please note, I DO NOT regret anything++++ but I wish I would have been a little more realistic about what a double mastectomy and reconstruction was really like.

Not more realistic from a pain perspective–sure there were days where it hurt like hell, but pain subsides and eventually you can’t remember exactly how bad it was. Thanks to our protective little brains our memory fades just like the pain itself. But I wish I had been more realistic about what it means to have to completely rebuild a set of boobs. Next week, 10 months after my mastectomy, I head back into surgery for a revision and another round of fat grafting. My skin, it turns out, it ridiculously thin and that’s causing my left implant to push up against my the side of my boob. It’s painful and looks funny. So back under the knife I got.

Last week when I found out about the surgery, I cried. Granted the news came on top of an early morning ultrasound following another round of egg retrieval and right before getting an order from my OB Onc to follow up on a nasty cyst that doesn’t seem to want to go away. But still, it sucked and I cried. By myself in the hall of the hospital nonetheless.  I cried because I’m sick of doctors, and needles, and surgeries, and because I just can’t figure out how to love my new boobs.

But the more I think about why I’m so upset I wonder if it was because my expectations had been so unrealistic. I knew I wasn’t getting a Boob Job. And I’ll happily punch anyone who makes the comparison! But I did think, “I’ll chop my boobs off, heal, and then get a new set that I’d learn to love.”  You know, the ‘ole one and done.

I still think I have a shot at healing and then learning to love my foobs. It’s just that it’s more like “have my health breasts removed, mourn the loss, heal, spend months having my pectorals slowly stretched to hold heavy implants, heal, get implants that are smaller than I want, have fat sucked out of my stomach and injected into my boobs, heal, oh and then, back to the operating table to find more fat to suck out and inject back into my boobs….followed no doubt, by another round of healing. And then maybe, just maybe one day learn to love my new boobs.”

What a roller coaster this has become. I don’t regret it. I’d do it all again in a heartbeat, but I can’t help but think that maybe if I’d been more realistic about the length of this process it would have been a bit easier to view things as checkpoint and not setbacks and not get so damn frustrated in the process.

Who knows.

XO,

Pre-Op List

979853149306_0_ALBI spent a lot of time before my mastectomy reading books, blogs, amazon, and social media posts about things to have during my recovery. As I read I started to create a checklist of items. Then during and after my recovery I added items to the list that had aided in my recovery. I see a lot of other BRCA girls post asking questions about what clothes or other supplies they will need for their own recoveries. So I converted my list into a PDF and am sharing here in case any of you are interested in it.

It’s kinda long and not everything is a “must have” but I’ve tried to be comprehensive for those of you who are like me and want to see all the options. Hope you find it helpful. For me the simple act of checking things off the list brought me some peace of mind. Feel free to let me know if you have any questions or additions to the list.

Click here for the list : Pre-Op Prep List

Xoxo

Headed Back Under The Knife

A week from today I go back in for my exchange surgery! This is the one where they will remove the obnoxious, hard, painful, magnetic tissue expanders that have taken up residence in my chest for the past 6 months and replace them with soft implants.

This is good. This is also scary. The exchange surgery will make my 3rd surgery in 6 months. That’s a lot, especially when you remember that this is all done to prevent not treat cancer. Those of us with BRCA mutations or strong family histories of cancer put ourselves through so much, so very much, to avoid the fate of those before us. And it’s exhausting, and terrifying, and painful, and I find myself way more nervous about this surgery than the last two.

In theory this one should be the easiest yet. Smaller incision, no drains sticking out of my body for 4 weeks!, none of the cutting that was involved in the mastectomy, no pain from trying to stretch my poor pectoral muscles, and unlike my first round of fertility preservation, no risk of my ovaries blowing up to the size of cantaloupe. Have I mentioned I’m 5ft and 115lbs–no room for 2 cantaloupe in my body! So logically I get this one will be a piece of cake compared to the first two, but emotionally I can’t help but still worry. I now know what a 9 or 10 feel like on that darn medical pain scale and I’m afraid I’ll end up back there, I’m worried I won’t like the finished “product”, I’m worried one surgery won’t be enough to even get to a finished product. What if my body rejects the implants? What if something goes wrong while I’m under? And then there is always the worry that I won’t have support when I need it-downfall to living alone, I guess.

But I do need to point out that AGAIN, I DO NOT REGRET a single choice I’ve made. I didn’t ask for this stupid mutation or for such a high risk of cancer, but I did ask to aggressively try to reduce my cancer risk and there is not a day that goes by that I don’t KNOW that these have been the right choices for me.

So while I count down the days until next Thursday I’ll channel my energy into getting my house, job, and life in order and just assume this recovery will be a breeze.

Wish me luck,

R

feeling up implant options and then giving away half of my blood supply ;)

feeling up implant options and then giving away half of my blood supply 😉

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Decoding Annie Parker, you, and me

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Last week I was looking through NetFlix and saw that the movie Decoding Annie Parker had recently been added. A little background for those of you who haven’t seen it: Annie Parker is a real person who lost numerous women in her family to cancer prior to her own diagnosis of breast cancer. The thing about it is, that this all happened to Annie at a time when few people believed there could be a genetic link to cancer. Cancer running rampant through generations of women was thought to just be bad luck. The movie takes you through much of Annie’s journey while simultaneously taking you through Mary-Claire King’s genetics lab’s ultimate discovery of the BRCA1 mutation. It’s as much of an emotional tale as it is an informative one.  I’ve seen the movie once before right after my mastectomy and wept. So I knew what I was getting into when I opted to watch it again, but I think I was in the mood for a healthy display of emotion..

The thing I like the most about Decoding Annie Parker is that it’s not a fairy tale romantic comedy style cancer movie. Yes, it has it’s wonderful highs and lows, but it doesn’t end with a “lived happily ever after.” And those of us touched my BRCA mutations know that cancer doesn’t come with a prince on a white horse, an earth shattering kiss, or a blank-slated happily ever after. We know BRCA and cancer come with surgeries, body mutilation and drawn-out “I can’t do this another day” style recoveries, and in the cases of many of our mothers, sisters, aunts, and grandmothers often death. And that’s why I like Annie Parker. That woman has had breast cancer once and ovarian cancer twice–no fairly tale. BRCA cancer took her hair, her breast, her ovaries and uterus, her first marriage, her sister, mother, grandmother, and in a sense her best friend. And yet she lives today, speaking her story and advocating for the free the data anti-gene-patent movement. Now maybe she’d say it’s a happy ending to have beaten cancer 3 times, but I’d say having to beat cancer 3 times puts any Grimm story to shame. Beating BRCA cancer 3 times is the horrible legacy of genetic cancer that forces women to fight and push forward when their lives are literally slipping away. That’s the work of modern medicine, access to quality health care, and above all grit and resilience not magic beans or fairy godmothers.

Watching it again I couldn’t help but be eternally grateful for both Annie Parker and Mary-Claire King. Without those two woman I wouldn’t be writing this blog because I’d have no way of knowing that cancer that was hiding in my genes waiting to erupt in my breast or my ovaries. If those women hadn’t fought to make the world to acknowledge hereditary cancer I would never have begun to take preventative measures against cancer and who knows what that would have meant for my life expectancy. Watching the movie I also found myself so sad that this legacy of cancer is pumping through my veins. Yes, knowledge is power and I intend to make the most of my knowledge of my BRCA1 status, but in this case knowledge is both empowering and saddening. My BRCA1 mutation has been with me since birth, but it wasn’t until it’s discovery this past summer that it began to flip my world upside down. I worry sometime that if I share too much of the sadness, frustration, heartache, and physical pain that has accompanied my BRCA journey that other’s will shy away from making prophylactic choices, so I try to balance out the ups with the downs. And although I DO NOT REGRET a single move I’ve made to prevent cancer, BRCA1 has changed just about everything I thought I knew about my life. It’s impacted my relationships. Some once very close are now strained or non-existent. Others stronger than ever and other’s new BRCA-formed friendships from social medial or groups like BrightPink. And physically, not only does my body look and feel different it acts different as well. It’s an odd thing to wake up in the morning and not recognize the body you see in the mirror. And learning to love what you see all over again is no easy task. It’s odd too to no longer feel a part of your body–to look down and realize the corner of a counter has been poking into your boob without your knowledge. And don’t even get me started on the whole “life plan” part of things! I sure as sh*t never saw a double mastectomy, egg freezing, and ovary removal followed by menopause on my “things to accomplish in my early 30’s” list.

So I guess my point, to bring it back to Annie Parker, is this: no matter what lens you want to view it from, BRCA is no walk in the park. Even when you’ve managed to get a preventative surgery in on your breast before they turn cancerous, your ovaries are waiting to attack, and when those are removed, you’ve still got other uterine cancers along with colon cancer, melanoma, pancreatic cancer, and stomach cancer that you’ll always be at a higher than average risk for getting. With BRCA1 you’ll have to learn to live with and manage a new life-long fear of a very real cancer.  The saving grace though is that thanks to women like Mary-Clair and Annie we know our fears are rationale and we have options to try to prevent cancer and/or catch it early. Not perfect, but a hell of a lot better than a few decades ago.

Please help me give my mom the memories of a lifetime!

Hi friends,

After a year of heartbreak please help me give my mom the memories of a lifetime.

As many of you know my mom was classified as in remission from ovarian cancer this past December, which was truly amazing. But  there is no true test for ovarian caner and the ovarian cancer she had and our BRCA mutation is associated with only a 2 year average of remission before the cancer returns. This is not truly amazing and our ob oncologist has told me that now is the time to enjoy our time together, do things we enjoy, and travel.
My mom, loooooves nature and has always wanted to go to the Grand Canon and after the year she has had I would like to surprise her with that trip. The problems of course is time and money. Both of us have rung-up tens of thousands of dollars in medical bills and neither of us are free of doctors visits or surgeries. This is where GoFundMe comes in.
I’ve put together a page asking for donations that will help cover the trip. I am asking you to please consider donating even $5 to help me put this trip together. If you can’t donate, would you consider passing the link onto those who can?
I will be having my 2nd breast surgery in march/april which will then be followed by recovery, another round of fertility preservation, and then another surgery to remove my tubes and ovaries–all by September which is why I asking for donations now.
Thanks for everything!!

My foobs are getting on my nerves…literally. Diagnosing nerve damage.

Just after Christmas I called my PS, It had been about a month since my last expander fill and instead of feeling better I was in constant pain. On the lower inside of my left boob I was experiencing this horrific burning sensation. It felt like someone was holding a match to my skin. On my right side, there was this lightning-like shooting pain that would cross from the top right of my boob to the bottom. Both made it pretty impossible to function at a normal level. Nothing seemed to help no meds, amount of rest, or homeopathic remedy–nothing. I was sleeping in roughly two hour intervals, driving (turning the wheel, parallel parking, and just the thought of scraping ice or snow) was excruciating and every time I attempted something normal, like a target trip, I have to give-up half way through and tell whomever I was there with that they could finish their shopping, but I needed to sit down and just wait for them.

The problem it turned out was nerve damage…and me. The nerve damage was a result of my mastectomy which, I later learned, is not all that uncommon. But the bigger problem was me and my fear of looking like a whimp. I had heard from multiple people that living with tissue expanders was uncomfortable and even painful, so I assumed I was simply being a baby. For nearly 30 days and nights I talked myself out of calling my surgeon because I was worried people would think I was simply not tough enough. In hindsight, that thought was completely insane…I’d just elected to have my breasts removed to prevent cancer. That seems like it fits the definition of “tough”, but I digress.  It really wasn’t until I had read online about nerve damage that it dawned on me that what I was experiencing was not exaggerated discomfort, but a serious complication to surgery.  The following Monday, I called my personal nurse at my PS office and told her how bad my pain was. She told me to come right in. I said, I couldn’t. I’d missed a lot of work this year and in that moment was headed into the office for a meeting I really couldn’t miss. She told me if my pain was that bad I needed to come in or go to the ER because there was no way I should be in pain like that a month out from my last fill. I said, neither the ER or the PS office were an option for that day (again, I was being my own problem) and convinced her to just let me come in the following day. The next day when I met with my PS she told me that she had spoken with my OB oncologist and my breast surgeon and the 3 of them (how lucky am I that my drs collaborate and talk like this!!) had decided that my pain sounded like nerve damage and that controlling that kind of pain wasn’t their specialty, but that they were referring me to a palliative care doctor who specialized in pain management. They even scheduled an appointment for me that same day.

It’s always been my impression that palliative care docs are the folks you see when you’re getting close to dying and they are the ones charged with making it as painless as possible. This freaked me out some especially because they are located near the chemo section of the cancer center in my hospital. Does anyone else feel like your BRCA preventative measures and treatment feel way too much like cancer itself some days? This was one of those days for me. Anyway, I met with a great doctor and she confirmed that my pain was nerve damage and then talked through treatment options. We decided on two nueropathic meds gabapentin daily and tramadol for break through pain. The first is the same medication my mom is one from nerve damage from chemo.

I went home that night and started the meds and when I woke up the next morning, I cried. Not because I was in pain, but because for the first time since my mastectomy nearly 3 months prior I was NOT in pain. I realized at that moment that I had been living at a 7,8, or even 9 on that wacky hospital pain scale for a month. Worse than that the only reason I’d been living in that much pain was because I’d gotten it in my head that I was just being a baby.

Since then I’ve thought a lot about my own lack of self-empathy. No one had told me I was being a baby, no one had outright made me feel like I was being a wimp. My drs especially had never made me feel that way. But when I look back I think I had gotten it in my head that I needed to have bounced back better–that others expected me to. Months after my mastectomy most of my friends had eased up on their checking-in on me and when I wasn’t up to resuming my regular social life, it seemed to just move on without me. Even more, I had a few friends just fall off all together, it was like I had maxed out the allowed time they could be around during a recovery. Work was the same. Not all, especially not those who work closely with me, but enough of my coworkers had moved past the early sympathetic weeks of my return to work and now my extra days working from home were met with some questions or comments rather than with the understanding that I was capable of getting my work done (mostly computer work at that point) but that I needed to minimize driving and maximize the extra comfort of my lazyboy and movable desk to get through the day with minimal pain.The problem though really wasn’t others, it was me.  I allowed myself to internalize those feelings and decided for myself that I was being unreasonable with my pain. I didn’t take my own advice to keep open communication with my medical team and it cost me dearly in the form of days of horrific pain.

I’m now 3+ weeks on my new meds and my pain from the nerve damage is almost completely controlled and when it’s not, I’ve got the tramadol on hand to bring it down quickly. I’ve even taken multiple solo trips to target…great for my psyche bad for my checkbook. I wish I could tell you I’m 100% back to being a normal person, but for those of you who’ve been through this you know expanders never feel normal. And to add to it all I’ve recently done my first round of fertility preservation (the cancer/BRCA phrase for IVF) and with that too, I’ve hit some road bumps. But each day is better than the last, and there is still not a single day that I regret my preventative surgery. I know years from now, I’ll look back and it will be a blur. And the reason I know that, is because I’m dealing with my predisposition to cancer now so that I WILL be here years from now to look back.

XOXO