Solitude & Cheesy Romantic Comedies

Believe it or not, I watched the following movies in a row on Saturday: (1) “Head over Heels” with Monica Potter and Freddie Prinze, Jr.; (2) “How to Lose a Guy in 10 Days” with Kate Hudson and Matthew McConaughey; and (3) ”50 First Dates” with Drew Barrymore and Adam Sandler.  Though such a gag-me-with-a-spoon marathon would usually have me . . . well, gagging, I was particularly drawn in this Saturday by the lighthearted take on romance.  At that moment, I needed a positive outlook on love.

I had an amazing Friday night, attending part of the Decibel Festival, a weekend-long electronic music festival in Seattle.  I saw Deadmau5, a DJ from Toronto, who was off the hook.  I also had the chance to see Phidelity, a DJ from Portland I particularly wanted to see spin that weekend.  While enjoying the music that evening, I noticed lots of attractive men around me trying to make eye contact.  However, rather than engage these fine gentlemen head-on, I averted my gaze and avoided eye contact.  It’s a very similar feeling I had when I was caught off guard by the cute resident in Dr. Neligan’s office — timidity.  I usually never avoid eye contact.  It was disconcerting that I was not as confident as I usually am in those situations.  Usually I “hold court” in social settings, so it was very odd to be as shy as I was that evening.  I kept to myself and stayed near my friends.

When I returned home, I looked around my apartment, took a deep breath in, and realized that I am truly alone.  I don’t think I’ve ever blogged about this, but for those of you who don’t know me, less than one month after my diagnosis I ended my relationship with my then live-in boyfriend of two years.  Crisis really forces people to confront their own demons.  Some rise to the occasion and some don’t.  After facing my own death and reprioritizing my life to keep my sanity, I realized that my relationship at the time was more of an emotional drain than support to me, and that I needed to end that chapter in order to start a chapter of healing. 

I’ve been alone for the last seven months throughout my treatment, and I haven’t really thought about what it is like to be alone.  Honestly, I haven’t had the luxury of that mental exercise, because I’ve been busy with chemo and deciding on an appropriate surgery.  Now that I’m close to the end of this journey and about to start the reconstruction process, it makes sense that I have the mental bandwidth to worry about other things, such as my sense of beauty, love, and romance.  The problem is, I’m terribly out of practice being single.  Additionally, I fear that I won’t be the same woman after my surgery, and I’m already feeling anxious about how to “market” myself in the sea of single people with no breasts or reconstructed breasts.  Of all the things to worry about, I can’t believe these issues are on my mind. 

So here I am on Saturday, beating myself up about failing to take advantage of the tons of opportunities that came my way the prior evening.  I’m working on my laptop while flipping through the channels on TV when I come across the terrible trio of romantic comedies.  I’m just about to turn the channel to the Food Network, Bravo, E!, or Comedy Central (my usual TV defaults).  However, something prevents me from pressing the buttons on my remote.  Rather than turn the channel, I engage with these movies and allow myself to get into the story lines.  Cheezy, yes.  Unlikely scenarios, yes.  Unrealistically beautiful characters, yes.  But hell, who cares?  There’s something about a cheezy romantic comedy that is just good for the soul sometimes.  I felt uplifted and in a much better mood after watching these movies.

At times, it’s really sucked to be alone on this journey.  Most of the women in my breast cancer support system have partners who have stuck by them throughout their treatment.  When I’ve had bad days, I have definitely envied the support these women have had.  Don’t get me wrong, as I’ve blogged in the past, I have been blessed with an amazing group of friends who take very good care of me.  And I definitely feel that I have been placed on this path to travel without a partner for a reason.  I am a much stronger person now than I have ever been.  However, the support of a partner is a very unique thing, and with the clock ticking away — today marks two weeks before my bilateral mastectomy — I’m feeling vulnerable to the sadness that comes with being alone.

You’ll never guess what’s playing on TV while I write this — “Bridget Jones’ Diary.”  And yes, I’m watching it, and feeling even better.

Hug Sensation

I had a moment today while giving a friend a hug.  I really appreciated how it felt to give and receive a hug.  I’m not one of those people who gently tap on the shoulders without making any chest contact.  No, I’m a full-chest-contact hugger.  I wasn’t always this way — I did not grow up in a very physically affectionate family, but being blessed with such an amazing group of friends, I’ve learned to greet them in a way that reminds them how much I care about them.  Over the years, I’ve subjected my physically reserved/stoic family to my hugging, and it’s been amusing to watch them acquiesce.  Life is too short not to let people know how you really feel about them if you love them.  Now I understand those weird, sometimes uncomfortable hugs my godmother used to give me when I was a child.  You have to be comfortable in your own skin to be a full-chest-contact hugger, and you have to have a lot of trust to allow someone to get that close to you.  Nowadays, I laugh when I hug someone who purposefully holds me away during the hug.

There’s something unique and special about really embracing someone – the feel of another person as close to you as possible (within appropriate social bounds, of course).  A lot of is exchanged in the process — body warmth, heartbeats, and lots of love.  Today I realized that after my surgery and reconstruction giving and receiving a hug will never be the same.  There’s all this hype about losing nipple sensation, which I will definitely miss, but honestly, I’m more disturbed by the loss of ”hug sensation.” 

I intend to give lots of hugs between now and my surgery date.  I know that I’ll still be able to give lots of hugs even after my surgery and reconstruction, but the thought of losing “hug sensation” makes me sad and I want to live it up while I’m still able.  Yet another lesson on how never to take anything for granted.

Natural Woman

As I face the loss of part of my “womanhood” by losing my breasts, it was pleasantly surprising today to be reminded of what it feels like to be a woman.  

Today I met with Dr. Peter Neligan, another premier reconstructive plastic surgeon in Seattle.  Dr. Neligan did reconstructions in several high-profile cases, including Maria Federici, the poor woman who was hit in the face with debris from a car traveling in front of her while she was driving on I-405.  Dr. Neligan specializes in post-oncologic reconstruction, head and neck reconstruction, and facial animation. 

Before I met with Dr. Neligan, I met with the resident physician working with Dr. Neligan to go over my medical and cancer history.  When the resident walked into the room, my heart skipped a beat – the man is gorgeous!  It’s funny — I’ve been so focused on my treatment and getting better that I haven’t really paid much attention to the opposite sex while I’ve been on this journey.  Perhaps it’s because I’m almost at the end of treatment for Karla, perhaps it’s because it’s been almost eight months since I was diagnosed, or perhaps it’s because my reproductive system is coming back to life and my hormones are wacky — whatever the case is, I recognized how attractive this resident was and got a bit giddy around him.  

When entering the examination room, the resident smiled, introduced himself, and shook my hand, at which point I noticed that he had a hard time making eye contact with me.  I wrote it off as just “resident jitters” or even slight discomfort with me, as I’m a very direct person who makes a lot of eye contact.  Not everyone meets my gaze during conversations.  However, our interaction became more interesting and a bit comical as he asked me several questions about my health and status and we got into more personal questions about me.  With his gaze directed toward my medical chart that he was taking notes on, the resident asked me, “So, what’s your marital status?”  I responded, “Single.”  He paused, smiled, glanced at me, and asked, “Do you want to be married in the future?”  Not thinking about the relevance of this question, I quickly responded, “Oh yeah.  Of course.”  While writing additional notes on my chart, he smiled again, glanced back at me after finishing his notes and asked, “Would you like to have children in the future?”  And I responded, “If possible, yes.  I would definitely love to have kids.”  He smiled again and asked whether I lived alone, to which I responded, “All by myself.”  At the time of my responses, I didn’t think much about the relevance of these questions.  I just assumed they were relevant.  But as I sat there processing the resident’s interview of me and specifically his question about whether I want to be married in the future, I realized that either this guy was fucking with me or he was flirting with me.  Why the hell does my plastic surgeon need to know if I would like to be married in the future?  As I’m considering this very question, the resident interrupted my thoughts by asking me, “So, where do you live?”  I composed myself and cautiously answered, “Capitol Hill.”  He made direct eye contact with me this time, responding, “Wow.  I live on Capitol Hill too!  Just moved here a few months ago, but I really like it so far.”  A slow smile crept across his face as he held eye contact with me.  I started to blush and averted my gaze to break eye contact, which I never do.  “Me too,” I mumbled, as I stared at the ground.  After a moment, I looked back at him in an attempt to re-engage eye contact and was met with his brilliant, dark eyes.  I suddenly felt weak in the knees.  Thank God I was sitting on an examination table.

The resident politely excused himself to summon Dr. Neligan, and after he left I returned to my earlier thought process about the relevance of the line of questioning I was just exposed to.  Questions about my marital status and whether I live alone are totally relevant for the purposes of this visit.  With potentially long recovery times from reconstructive surgery, it’s understandable that Dr. Neligan may want to confirm that I have an adequate support system.  Questions about my desire to have kids are also potentially relevant in the context of a breast reconstruction consultation.  Dr. Neligan may want to discuss breast feeding issues with me.  But questions about whether I want to get married in the future?  How the hell is that relevant?  My skepticism and intrigue increased as I sat on the examining table.  I also realized at that moment that I was starting to experience a pretty bad hot flash.  “Great,” I thought to myself, ”this resident has me aroused enough to have a stupid hot flash come on.”  I proceeded to take the blanket off of my shoulders that the nurse put on me earlier to keep me warm in the freezing examining room.  Then I realized that I was starting to “nip out” because although I was having a hot flash, I was still super sensitive to the temperature in the room.  I became extremely self-conscious about the resident returning with Dr. Neligan and finding me sweating like a pig with extremely erect nipples.  Now that’sattractive.  However, I quickly addressed my self-consciousness about my erect nipples by recognizing that I have to relish these moments when I have them – I won’t be able to “nip out” after my surgery.  This sobering revelation, though somber, put my mind at ease and I felt my hot flash start to subside.  Dr. Neligan and the resident returned, and I noticed that the resident was slightly more comfortable making eye contact with me this time.  He smiled at me, and when he did, I smiled back. 

Dr. Neligan is much different from Dr. Paige in physical stature and appearance.  While Dr. Paige is tall, has dark features, and is relatively young, Dr. Neligan is shorter and has grandpa-like features (young and agile grandpa – not old and rickety grandpa).  I immediately felt comfortable talking with him.  He gave me much of the same information as Dr. Paige, but his perspective was different because he has been a plastic surgeon for longer and came to Washington from Toronto.  We talked a bit about the history of breast reconstruction techniques, and for some reason, I asked a ton of follow-up questions that I did not think to ask Dr. Paige.  Dr. Neligan was invested in our consultation and did not seem concerned with the amount of time our meeting was taking.  We discussed all of my options and he answered every question I had.  Despite the fact that I heard a lot of the same information from Dr. Paige, it was an extremely useful consultation.

After answering all my questions, Dr. Neligan asked me to stand up so that he could inspect my breasts and potential donor tissue for an autologous procedure.  I had earlier taken off my top and was sitting on the examination table in my work pants and a medical gown covering my top.  I realized at this moment that I was going to have to strip in front of the cute resident.   I mean, it’s one thing for a doctor to put a stethoscope to your bare back or chest.  It’s quite another thing to take off most of your clothes so that a plastic surgeon can poke, prod, grab, and inspect some of the more sensitive areas of your body.  I started to feel another hot flash come on.  Thankfully, it subsided before I stood up.  Dr. Neligan inspected my boobs, grabbed my “muffin top” flab around my abdomen, and confirmed that I do not have enough ab flab to create two boobs that will be the same size as my existing breasts (I think I’m a full A or small B).  Therefore, if I do an autologous procedure that uses ab flab, my reconstructed boobs will be smaller than what they are now.  Dr. Neligan also confirmed that I do not have enough inner thigh tissue or upper buttock tissue to do the procedure.  I do, however, have enough lower buttock tissue.  However, this procedure, which I think is called an “IGAP,” is a more invasive surgery that has a longer recovery time.  Additionally, this surgery would make my bum flatter.  I may not be J-Lo, but I do like the shape of my bottom. 

In the end, Dr. Neligan said that we need to wait to see if I will need radiation treatment after my mastectomies.  If not, I will need to decide what size I want my reconstructed breasts to be.  If I want to be bigger than what I am now, I will need to go the implant route, which means that the chances are that I will likely need surgery sometime in the future to remedy issues with the implant(s).  According to Dr. Neligan, 50% of all silicone implants will fail at some point during the lifetime of the woman receiving the implants, and many women with implants have an additional surgery within 10 years of their initial surgery.  On the bright side, Dr. Neligan also pointed out that if I chose implants now but were unsatisfied with the results (or several years down the line the implants rupture), I could always have an autologous procedure done at that time.  As he put it, I wouldn’t be “burning any bridges” by choosing implants now.  However, if I chose an autologous procedure that utilized ab flab now, I wouldn’t be able to re-do the surgery using ab flab again. 

Today’s experiences were bittersweet, though more sweet than bitter.  I mean, who would have thought that my jokes about moving midsection fat to my boobies would actually be a possibility?  At the same time, how sad is it that my celebrated weight loss has precluded me from recreating my existing boobs with an autologous procedure?  As Dr. Neligan grabbed tissue from the potential donor sites, he kept saying, “Wow, you’re pretty tone there,” and “Nope, not enough fat there.”  These should be comforting words coming from anyone.  But today, they were definitely bittersweet.

So back to my cute resident.  Perhaps he is new enough that he is still uncomfortable examining naked women, but I couldn’t help but notice that he had a hard time looking at me when I stripped down to be examined and may have actually blushed during the process.  Maybe he was uncomfortable and/or blushing for reasons wholly unrelated to me, and maybe the entire narrative about our earlier coy exchange is more misinterpretation on my part, but I’m going to sit with my fantasy for just a bit.  Our exchange today made me giggle and put a smile on my face for the rest of the day.  I’ve found snippets of pleasant moments among the shitty ones on this journey, and today is a great example.

Dr. Paige and My Reconstruction, Part II

Today I met with Dr. Keith Paige for a follow-up appointment to discuss my reconstruction, given my recent revelations about having a bilateral mastectomy.  Perhaps it was because I am in a different mental and emotional space now, but Dr. Paige appeared to be much more pleasant with me today.  I swear, either the man is bipolar or I just happened to catch him on a bad day when I first met him.  I’m hopeful it’s the latter.  Today he was extremely informative and attentive to all of my questions, and he came across as genuinely sensitive to my situation.

First of all, Dr. Paige told me that to maximize the chances of a successful reconstruction, I should have the bilateral mastectomy done in one procedure — that is, both breasts taken off at the same time.  He also indicated that I should have the mastectomies done the same way — both radical (no skin-sparing procedure for the unaffected breast).  It makes sense — it’s harder to match one boob to an existing boob than to create two new boobs from the same “material.”  I’ll have to struggle with this reality for a bit, as I was hoping to be able to delay the mastectomy of my left breast until the reconstruction began.   A delayed left mastectomy would be more emotionally palatable — I would have to deal with the deformity of just one lost breast for the next 4-6 months, and by the time I lost the other breast my reconstruction would have begun.  Oh well, not like this journey has been peaches and cream the whole way — disappointment and hard times are no strangers to me.

Dr. Paige and I also had a long discussion about all the different reconstruction procedures and the risks and benefits associated with each.  As I may have mentioned before, there are two types of procedures: autologous (using my own tissue) and alloplastic (using implants).  If I need to have post-mastectomy radiation, my only reconstruction option would be autologous (using my abdominal fat/muscle).  Use of implants would likely result in failure for the radiated side, because radiation kills skin, making it hard.  This decreased elasticity may push the implant around, compromising the success of the surgery.  However, if I do not need any radiation therapy, the type of procedure is entirely up to me. 

With implants, my reconstruction would begin with the insertion of tissue expanders.  These would be slowly filled up with saline over the span of a few weeks/months to stretch the skin to the desired size.  The expanders would then be switched out and the actual implants would be put in place.  There are several benefits to using implants: (1) the initial surgery is more “simple” and recovery time is less (2-3 weeks off of work and 4-6 weeks of total recovery time); and (2) implants will “fill out” the cavities created by the mastectomies and if I want, I can go bigger.  The big downside to using implants is that 1/3 of all women who have implants put in will need additional surgery in the future (e.g. correcting symmetry issues, remedying ruptures).  Additionally, if I go for bigger boobies, I will have to wait for the expanders to do their job of stretching my skin before the implants can be put in.

The benefits to using my own tissue are as follows: (1) the cosmetic result (as long as I have enough flab to contribute) may look more natural than implants; (2) though the surgery is more complex, it would be a “one-shot” procedure; (3) assuming the surgery is successful, I will not likely need additional surgery in the future; and (4) my belly flab or back flab will be relocated to my boobs!  Downsides include the following: (1) recovery time is significantly more than that with implants (5 days recovery in the hospital, 3-6 weeks off of work, with a total recovery time of approximately 8 weeks); (2) my reconstructed boob size is limited by the amount of flab I have to contribute; and (3) there is a 5-10% chance the donor tissue will not survive when it is transplanted to my boobs, which would put me right back at square one.

I asked Dr. Paige how long it would take for the reconstruction to be complete and he dropped a bomb on me — 12 to 14 months!  Now that includes nipple reconstruction too (which is a whole different process I’ll have to explain later), but still, what a long fracking time!  That’s longer than my treatment for Karla.  Dr. Paige explained that unlike other doctors, he prefers taking his time with each procedure to make sure I’ve totally healed before initiating the next step.  According to him, that’s why his work yields such good results.  Makes sense to me, but it will be interesting to meet with Dr. Peter Neligan tomorrow from UW Medical Center.  Also one of the top breast reconstruction plastic surgeons in Seattle, I consult with Dr. Neligan tomorrow for a second opinion.  I suspect he won’t have much more to share with me, though that’s the reason why I’m going in for a second opinion — just to be sure.

Amazing Women

My life started as a result of an amazing woman.  I may not have known my Mom very well before she passed away, but all my family members and my Mom’s friends describe her as dynamic, intelligent, and loving.  It’s appropriate that by all accounts, she is also described as a fighter.  She was a resilient tomboy — climbing trees and holding her own with the boys on the plantations of Lana’i.  For those of you who have met my Dad, you may think my anima comes from him, but even my Dad tells me my spirit comes more from my Mom.  I feel her with me every day – especially on those days when I’m feeling extremely spunky.

This backstory makes it all the more fitting that during my journey with Karla I’ve been surrounded by amazing women.  I have been blessed with the most supportive group of female friends — they (along with many of the men friends in my close circle) have been as supportive as family members.  I’ve also been blessed with an amazing female cancer care team — Dr. Wechter, Dr. Pinder, Diane my nurse, and all the other nurses and assistants along the way have been one of the best support groups I could have ever asked for.

I earlier wrote about the women in my support group through FORCE and all the women who posted in response to my original post on the FORCE website about my issues regarding my upcoming surgery.  I’ve also received a lot of support from random women who have found my blog through the web and who have taken it upon themselves to contact me and make themselves available as resources and shoulders to cry on. 

Today I spoke with Nicole, an impressive woman in her early 30s who found my blog and wanted to make herself available as a reference for me.  She recently went through a prophylactic bilateral mastectomy and reconstruction.  Nicole took some time away from work today to talk to me about her experiences and to listen to me vent about mine.  I left that conversation in tears — not because I was sad, but because I was so happy to have someone who has gone through a similar experience speak up, contact me to make herself available as a reference, and spend significant time with me to let me know that she understands how I feel and how shitty a position I’m in.

I also corresponded today with another woman who found my blog in August and contacted me today with her story, which was extremely helpful to me, as she has recently dealt with the same reconstruction issues that I am dealing with now.  Our exchange today made me feel more comfortable as I prepare for my meetings with Dr. Paige and Dr. Peter Neligan, the second plastic surgeon I am meeting with for a second opinion about my reconstruction.

It takes a lot of inner strength to help out another person merely because you recognize she/he is going through a similar situation as you.  Many of the women who have reached out to me are in the middle of shitty times themselves — be it the beginnings of dealing with a cancer diagnosis + an inconclusive genetic test result or a difficult reconstruction process.  I just want to give a shout out to all those women who have seen my blog or seen my posts on the FORCE website and who have taken time out of their schedules to tell me, “Hey, I know what you’re going through and I know how shitty you feel.  Here’s how I dealt with it, let me know if you have any questions, and contact me anytime to talk.”

Talk about “Girl Power.”  There is truly something empowering about having a whole army of women who have gone through what I’m going through now supporting me, confirming that whatever I decide will be okay, and letting me know that I’m in their thoughts and prayers.  How empowering is that?  In those moments when I feel like the world is coming down on me and I can’t bear the thought of enduring another day dealing with this crap, I receive the most uplifting gift I could receive — the support of amazing women in my midst.

Stupid Roller Coaster

Talk about a roller coaster ride I’ve been on.  I met with my breast surgeon (Dr. Wechter) on Friday.  Contrary to the information I received from the radiologists, technicians, and assisting nurses who conducted my MRI/digital mammogram/ultrasound, Dr. Wechter advised me on Friday that even with my great MRI result (the radiologist indicated that there were no traces of cancer visible), she still advises a mastectomy for my right breast because of the continued presence of calcification near the tumor site.  Although the tumor itself has shrunk considerably after chemo, the area of calcification has remained about the same.  So to be safe, Dr. Wechter will need to remove all the calcification also, which means a substantial portion of my breast will be removed if she performs a lumpectomy.  With how much boob she’ll have to take with a lumpectomy, I might as well have a mastectomy.  Dr. Wechter started to explain that she could do the lumpectomy but I cut her off, telling her that I’m not comfortable rolling the dice with this procedure.  I told her to do whatever she thought was most appropriate to insure that I will be cancer free.

This information about having a mastectomy was a good segue to discuss with Dr. Wechter my recent revelations about potentially having a bilateral mastectomy.  Dr. Wechter was extremely attentive while I vented about the difficulties I am having with making a decision about my surgery.  She spent a considerable amount of time with me listening to my concerns, answering my questions, and providing feedback and additional relevant information.  We talked specifically about my fears regarding insurance coverage for a bilateral mastectomy, and she put those fears somewhat to rest by sharing with me that she has never seen an insurance company turn down coverage for a prophylactic bilateral mastectomy for someone with an inconclusive genetic test result and a diagnosis of breast cancer.  Little does she know that my health insurance refused to pay for a wig for me during chemo.  Bastards.  Nonetheless, I remain hopeful that she’s right about coverage for the bilateral mastectomy.  She encouraged me to take additional time to really think through the decision about my surgery.  To accommodate a longer surgery if I choose the bilateral mastectomy route, we’ve postponed my surgery until October 2nd.

During my meeting with Dr. Wechter, she seemed to suggest that she thought a bilateral mastectomy would be premature at this stage.  With all the information being communicated during my appointment, I actually missed this detail, but Jackie, who accompanied me on Friday, brought my attention to it as we walked out of Virginia Mason.  Jackie’s been one of my most supportive cheerleaders on this journey, and I am extremely grateful that she was with me.  Dr. Wechter suggested having the right mastectomy on 10/2, then having the left mastectomy sometime in the future if I still want it.  Dr. Pinder suggested the same — that I have the right mastectomy now and have the left mastectomy after I’m done childbearing.  The problem is that I don’t have a partner now and I have no clue when (or if) I’ll have the opportunity to bear any children in the near future.  This would all be a different story if I was in a committed relationship with a mate who wanted to start procreating soon.  I don’t want to play the odds and potentially put my health at risk by waiting for something that may not happen in the future.  The reality is that I was only 31 when I was diagnosed with the most aggressive strain of the type of cancer I have.  As I’ve mentioned before, I just know deep down in my heart that I will be here again if I don’t take care if this now.  It’s not a matter of “if,” it’s a matter of ”when.”  What I feel is most important to me right now is that I do what I can to minimize future stress about my health and that I get back to “normal” (or as close to “normal” as I can be) as soon as possible with the least amount of surgery. 

Dr. Pinder shared with me on Friday that I will have to wait 6 months before I will be able to start the reconstruction of my right boob so that my cancer care team can give me a clean bill of health before the reconstruction begins.  Since I can’t have an immediate reconstruction, perhaps that’s one route to go — right mastectomy now, left mastectomy and reconstruction of both boobs in 6 months.  I’m thankful to have additional time to ponder this decision and get as much information as I can.  I meet with Dr. Pinder tomorrow afternoon to get her thoughts about my surgery and future treatment, I meet with Dr. Paige on 9/16 to discuss the details of my reconstruction, and I am trying to book an appointment with another plastic surgeon for a second opinion about my reconstruction.  With all the information I intend to get between now and October 2nd, I suspect this roller coaster ride will continue.  I hate not knowing what direction I’m going.  I can’t wait for the moment when I come to terms with what is the best decision for me.

Surgical Indecision Continues: Reconstruction Info & FORCE Support

I received a lot of great feedback from some of you after my last blog post.  I sense that many of you shared Sauce’s opinion about what surgical intervention I should choose but were too afraid to address it with me because I’ve been on the lumpectomy train for so long.  Thanks for chiming in.  I’m finally in a place where I can more objectively evaluate information and opinions, and I’m still not at a place where I can say definitively what I want to do regarding my surgery, so it’s been helpful to hear from those of you with an opinion to share. 

Today I spent a lot of time gathering information about prophylactic bilateral mastectomies (PBM) and post-PBM reconstructions.  Jesus!  Talk about a whole slew of additional variables I have not considered until now.  It was helpful to talk to Suzi about her recent mastectomy and her reconstruction discussions with her plastic surgeon, but now that I’m contemplating a PBM, I have a lot to wrap my own head around re: my reconstruction.  Do I have flap surgery or do I choose implants?  If I choose flap surgery, do I have a TRAM flap procedure or latissimus dorsi flap procedure?  If I choose a TRAM flap procedure, should I consider DIEP flap or GAP flap techniques?  My head is swimming.  I have a call out to Dr. Paige to find out what procedures I qualify for and what his recommendations are, given my situation.  Right now, if I qualify, I’m leaning more toward implants.  I’m already losing my breasts – I don’t want to lose abdominal or back strength too.  As Christina Appelgate shared regarding her own reconstruction (she’s opting for implants too): “I’m going to have cute boobs ’til I’m 90, so there’s that.  I’ll have the best boobs in the nursing home. I’ll be the envy of all the ladies around the bridge table.”

While searching for information about implant reconstructions post-BM, I found the following site: http://www.myselftogetheragain.org/process.htm.  [WARNING before you click on the link -- the photos are pretty graphic]  What an amazing project.  Debbie’s message made me cry today: ”This is your life.  This is your body.  Don’t let this disease take it from you.”  If I choose a PBM and have the reconstruction done, I’d like to have my journey documented in the same way.

I forgot to mention in my last blog post that my Dad’s genetic tests came back and confirmed that I received the genetic mutation of unknown significance from my Mom.  Although the genetic counselor at Myriad warned me that I should take this result with a grain of salt, I feel that this information bolsters how shitty my pedigree is with regard to breast cancer and that I should seriously consider a PBM.

While trying to process my Dad’s genetic test results, I posted on the FORCE website (for people with hereditary breast and ovarian cancer issues) today to find out if there are any other women out there facing the same dilemma I am.  Within hours of posting my inquries, I had several women respond with amazing stories of survival and no regrets.  What I took from their responses is that I should get as much information from my doctors as possible to fully evaluate my options, listen to my gut for that part of the analysis the doctors can’t provide, and make a decision knowing that there is no such thing as a “wrong” decision.  My exchanges on the FORCE message board today reminded me that I have an entire family of support through FORCE, and I intend to continue leaning on them throughout this process.

Tomorrow, I meet with Dr. Wechter (the surgeon scheduled to do my lumpectomy on Monday).  I suspect that I will leave my meeting with her with more information, and I am hopeful that I will also leave with a better idea of what the best surgical intervention is for me at this time.  However, I need to be prepared that my meeting with Dr. Wechter may leave me no more enlightened than I am now.  I’ve never faced such a difficult decision.  I’ve had the luxury of time to ponder over the last few months but now it’s time to call the ball and I can’t get over the fact that I still do not know what path to take.  Time’s running out and I just pray that I will soon be in a position to make an informed decision that I can live with.

Christina Appelgate and a Bunny Named “Sauce”

I cried on my way home from work tonight.  Perhaps I’ve been listening to Dido for longer than normal (I know — my ipod is terribly under-updated), but for the first time in a long time, I stared at the screen in my office and realized how much I couldn’t be there at that moment.  It’s funny — I just settled a multi-million dollar case for less than $690K (our client is extremely happy), got a trial court judge to SPANK opposing counsel in a case that is going to Division I Court of Appeals (I can’t WAIT to start oral argument in that case), and heard that one my firm’s biggest clients wants me on every major case our firm handles.  I’m getting kudos all around and all I can think about are my boobs.

So y’all know that I’ve been screaming to the high hills about how I want a lumpectomy because it’s a less invasive procedure, how I can preserve my ability to breast feed, and how I can’t live in fear of some stupid statistic about my chances of getting breast cancer in the future.  But recently I’ve reconsidered that mental approach.  Last month Christina Appelgate announced that she underwent a bilateral mastectomy because she was recently diagnosed with breast cancer and also found out that she has the BRCA 1 breast cancer gene.  Something she said in her interview resonated with me:

“My decision, after looking at all the treatment plans that were possibilities for me, the only one that seemed the most logical and the one that was going to work for me was to have a bilateral mastectomy. . . .  I didn’t want to go back to the doctors every four months for testing and squishing and everything. I just wanted to kind of get rid of this whole thing for me. This was the choice that I made and it was a tough one.”

Hellz yeah.  Who the fuck wants to deal with the fear of being diagnosed again for breast cancer?  Although Christina tested positive for the BRCA 1 gene, I’m kinda in the same boat.  Although my genetic test is inconclusive, my pedigree is just as bad, not to mention that I was also diagnosed with a pretty aggressive strain of breast cancer at 31.  I just know in my heart that I will be here again if I don’t address this problem now.

On the heels of this interesting announcement from Christina Appelgate, I had the opportunity to discuss my situation with Sassan aka “Sauce,” the boyfriend of my girl, Claudia.  Sauce is an ER doctor in NYC who I had the pleasure of hanging out with this week.  He approached me with an unusual candor about my condition.  Straight up, he asked me what he could provide me that I was not already getting from my cancer care team.  I responded by telling him that I would appreciate his opinion.  My surgeon, my oncologist, and all my other cancer care doctors have been “hands off” about advising me of their opinion about what I should do regrarding my surgery.  As reported in an earlier blogpost, my plastic surgeon was the only one to give me his opinion.  After listening to my dilemma and all the variables that I was trying to balance, Sauce asked me if I was ready for his opinion.  After I nodded ”yes,” he told me that he thought I should have a bilateral mastectomy.  Sauce noted, “Why worry?  Get some implants and not worry about the future, right?” 

It was very weird, hearing this perspective from Sauce.  I mean, I was dead set on the least-dramatic procedure to preserve my breasts and preserve my ability to breast feed.  Hearing an alternate perspective from Dr. Paige made me feel like he was insensitive to me, but hearing a similar perspective from Sauce made me think twice about my chosen path.  Perhaps it’s because Sauce is not on my cancer care team, or perhaps it’s because I trusted Sauce’s opinion as a new friend, but whatever the case is, I have revisited my initial choice of a lumpectomy.  I do not want to be in this situation again.  I can’t bear the thought of having to endure chemo in the future.  To lose my hair, eyelashes, eyebrows, and nails again.  To lose 6 months of my life to this disease.  To lose my ability to look at the world without fear.  I don’t want to be here again.  And for that reason, I’m seriously considering a bilateral mastectomy.

The reconstruction bothers me.  If I have a reconstruction of my right boob after a lumpectomy or mastectomy, it is unlikely that I will be able to have a second reconstruction if I happen to have breast cancer in the future in the left boob.  I’ll be SOL.  However, if I have a bilateral mastectomy and a bilateral reconstruction, my chances of having symmetrical boobs in the future will be higher.  I did not realize until my discussion with Sauce how vain I am.  Fuck this “no reconstruction” crap.  I want to look as normal as I do now.  I want to have my boobs back to “normal” to any extent possible.

What’s interesting is that my pre-operative tests yesterday have determined that I am a prime candidate for a breast-saving procedure (aka lumpectomy).  Karla is gone.  Other than what may be “inflammation” near the radioactive clip placed in the middle of Karla, she’s ultimately gone.  According to the radiologists, I have responded quite well to the chemo, and I am the poster child for having the least-invasive surgery done.  When it comes to a bilateral mastectomy, my insurance company told me today that they will only cover the procedure if my doctors bill it as “medically necessary.”  My surgeon has told me the insurance company can “go to hell” and I will be taken care of to any extent I deem necessary.  In the end, I just want to do right by me, and right now, I don’t know what’s best.  I do know that I feel like I need more than four days to make this decision.  I meet with my surgeon on Friday of this week, and perhaps that’s exactly what I’ll tell her.  Surgery on Monday is too much for me to mentally handle in this moment.