Stitch & Bitch Free (day 142 overall!; day 43 post newpples)

Good morning sunshine!

I’m up and blogging because trying to get this done at night never works as of late!  I am now 43 days past my nipple reconstruction and 142 days since my Stage 1 bilateral prophylactic mastectomy and DIEP flap breast reconstruction!  It’s hard to believe that 5 months ago I was a nervous and emotional wreck worried about the outcome of all of this.  And here I sit, just peachy keen (well, a  little sleepy with messy hair, but otherwise peachy).

So I have had to doctor’s appointments since my last blog post.  The first was with my breast oncologist, Dr. Larissa Korde of Seattle Cancer Care Alliance.  I met with her for ONE LAST TIME! just as a follow up and baseline assessment post bilateral prophylactic mastectomy and DIEP flap breast reconstruction.  Just as I was with my last visit with Dr. Sarah Javid, I felt very fortunate to have Dr. Korde taking care of me and screening me while I waited for a decision about what to do with my BRCA1 mutation and those damned boobs.  I saw Dr. Korde every six months for screening, either in the form of a mammogram or a breast MRI.  Now that I no longer have my natural breasts, I do not need a breast oncologist or breast cancer screenings!  What a relief!  As I’ve written before, there was such a  lingering feeling of doom every time I went in for my screenings. I just knew that that appointment would be the one at which I found out that I had dilly-dallied too long and this genetic mutation had manifested in breast cancer.  I would go through so many emotions waiting for my screening appointment and be upset with myself for not having our lives together and situated well enough to have the bilateral prophylactic mastectomy and DIEP flap reconstruction.  I knew that this process was going to ask so much of my husband, our family, loving friends, and our two little girls.  With the benefit of hindsight, I know that I didn’t misjudge the level of upheaveal my surgery would cause in our lives.  We needed a lot of help with the girls, and I can’t thank our family and friends enough for helping us.  Everyone was so supportive and wonderful; I was (and still am) stunned at how genuinely concerned, caring, and helpful everyone has been.  And, here I am, on the outcome end of all of this and feeling great about my choices and my surgeries.

Dr. Korde discharged me from her care and referred me to the wellness clinic at Seattle Cancer Care Alliance, where I will continue to go for my CA125 marker blood draws and pelvic ultrasounds to monitor the health of my ovaries since they, too, are at risk for developing cancer.  At our last appointment together, Dr. Korde performed a brief “breast” exam.  In true compliment to Dr. Otway Louie and his team, she asked me if I had the skin sparing AND nipple sparing mastectomy.  So, kudos to Dr. Louie for giving me such realistic, reconstructed nipples that they fooled a fellow physician!  Dr. Korde asked me if I had any concerns at that time, and my only concern was this arc shaped band of thick scar tissue that’s formed underneath my left noob.  It didn’t form (or at least noticeably form) until after my stage 2 revision surgery.  It’s about the thickness of a finger and runs from the side of my noob adjacent to my armpit all the way under the flap.  I noticed it when toweling off one day and that my pectoral muscle was uncomfortable in that same area whenever I raised my arm overhead.  Dr. Korde felt it and said that it did feel “different” to her.  She said that I’d probably be able to break it up with deep tissue massage or another modality, but to first ask Dr. Louie about it.  She said that I could have additional imaging done at Seattle Cancer Care Alliance if Dr. Louie was concerned about the scar tissue.  So, that got me all riled up because I was worried that I would have to undergo yet another procedure to address this weird band of scar tissue.

I then saw Dr. Louie on Monday, July 30, for our follow up.  I told him about my scar tissue, he performed a quick physical exam, and told me that I could simply start massaging it to break it up.  Relief!  Simplicity is so amazing at times like these.  At the time of my follow up with Dr. Louie, all but about 6 of my stitches had fallen out.  His resident removed the last danglers and, alas, stitch and bitch free!!!  If I do say so myself, these reconstructed nipples are pretty convincing.  During my healing, I was really worried that I wouldn’t guard them enough and would end up with flattened out newpples.  I spent a number of weeks looking like I was wearing Madonna’s long lost cone bra from the early 90’s because I was so padded up with protection around my newpples.  But it was totally worth the numerous confused and questioning looks receieved whenever I went out in a fitting t-shirt.  I have a little bit of projection and don’t look like I’m REALLY EXCITED to see everyone.  The circular shaped scar I have from my nipple reconstruction is different enough from the surrounding skin on my noob to look like arealos that are simply the same color as my noob.  My areolar tattoo appointment is on October 1, so I have a couple of months with no noob/newpple action to enjoy with our family.

I wanted to add in this post another testament to the great work of my reconstructive surgeon.  As with every blog post, I included photos of my recovery process on my last blog update.  I have done this throughout my process.  I have always included photos of my noobs, but it wasn’t until my last post with photos of my healing newpples, that I was flagged on Facebook.  My blog feeds to my Twitter, which feeds to my Facebook.  I found it interesting that up until that point, my noobs were of no concern to whomever flagged my last post on Facebook (which was later removed from my feed).  But, my convincing, reconstructed newpples are the official point of controversy.  I was very much testing the waters to see when, if ever, someone would think that the noobs were looking too much like the real thing.  So, in the words of Billy Blanks, Tae Bo – now you know!

Again, I can’t say that you enough to all of my physicians.  Dr. Javid did an amazing job on my mastectomy; my recovery and healing went really well due, in large part, to effective yet gentle touch.  Dr. Louie’s DIEP flap reconstruction is nothing short of phenomenal; the proof is in the pictures (no pudding, please!).  And, I have to say, I miss seeing Dr. Daniel Liu, who was Dr. Louie’s plastic surgery resident.  Everytime I had an appointment with Drs. Louie and Liu, it was so great to see him.  He is a great guy and surgeon.  He took mercy on my near pulsating anxiety and started to follow my blog when we were gearing up for surgery or shortly thereafter.  All of my rambling questions, my middle of the night concerns (both founded and, sometimes, just wild), and nervous energy just sent out to the ether…Dr. Liu was kind enough to send a note here and there to address them.  I have heard that many people are paying a pretty penny to have a Concierge Physician service.  I am not one of those people, but Dr. Liu was there for me free of charge.  It was, and is, such an amazing thing to have a physician so involved.  I feel, a lot of times, that when I’m out of a doctor’s office, that’s it for my concerns until the next appointment.  I don’t know if I was a particularly anxious patient or Dr. Liu is just a super nice guy, but either way I’m entirely grateful for his extensive care and attentiveness during my surgeries and recovery.  I believe he and his family are now in Chicago enjoying more of a summer than we’re having this year.  I hope his patients realize what a gem they’ve received from our Emerald City, and I hope he’s absolutely loving his new job.  But, I just wanted to send a huge thank you out there, in case he still reads this, for all of his help.

So, now for the photographic evidence of all of these doctors’ great work!  My abdomen incision is also looking really great.  Because I have several scars that have kiloided over my lifetime, I asked Dr. Louie what to do about my scarring.  He gave me a reference sheet for a product I can look into that may help me prevent this on my abdominal scar.  Once I’ve bought and tried this, I’ll post progress pictures if there’s a noticeable difference.  Right now I’m just trying to keep a good SPF on my scar and am wearing a new, one piece swimsuit that is UPF 50 to try and prevent my scar from getting any darker.

Next procedure up:  Areolar tattooing – October 1, 2012.

07/31/12 – Incision

07/31/12 – Incision, L side

07/31/12 – Incision, R side

07/31/12 – Noobs!

07/31/12 – L Noob + Newpple, upclose & personal!

07/31/12 – R Noob + Newpple, upclose.  Controversial!

Prince, Controversy

Ya Mama, Ya Mama, YAMAMA (Day 60)

Happy Mother’s Day!  The weather has been so amazing here this weekend, I hate to even mention it for risk that it will notice and run away (which seems to always happen in Seattle).

We’ve had a busy weekend full of fun, sun, and accidental midsection exposure.  It’s interesting how sometimes you (I) put something out into the universe, and it comes barking right back.  In one of my more recent entries (day 57) I discussed my abdominal incision and mentioned that no one has ever noticed or asked me about it.  Well, yesterday and today it went noticed and also got mentioned.  Interesting, right?  Yesterday I was with our daughters at the park and helping one of them onto a platform that leads to a slide.  My t-shirt crept up as I raised my arms, and a mom next to me said, “Wow!  You have the worst c-section scar I’ve ever seen.”  I was distracted, caught off guard and didn’t know what to say.  So, how did I respond?  I said, “Oh; thanks.”  That’s right.  Oh; thanks.  But what was I supposed to say?  How do you appropriately respond to someone making an incorrect assumption about a surgical procedure.  “Well, yes, I have this very large scar on my abdomen and twin toddlers.  Deductive reasoning might lead you to that conclusion…but really I lopped my tits off in hopes of beating cancer to the punch and replaced them with my muffin top.”  Better to live with the assumption, right?

A similar situation happened today at the park.  I was helping one of our daughters climb on a sculpture and my shirt crept up.  A little girl and her dad were next to us; she saw my scar and asked me if I was ok.  I said I was great and asked her how she was doing, at which point she decided I was a monster and ran away.  I thought it was funny (and a little encouraging) that, for her, the social interaction was more bothersome than my scar.  Like I said, it’s a little scary looking still.  I know it will improve a little bit more, but it’s definitely approaching what it will look like for the rest of my life.  So half shirts and bikinis are off the table, but that’s pretty much been my story since 2008.  I’m breast cancer free.  “NBD” as you young people say.

 

LOOK OUT BEEEELOOOOOOOOOW

 

 

05/13/12 – Frontal

05/13/12 – Noobs

05/13/12 – Abdominal scar

05/13/12 – Right

05/13/12 – Left

 

 

Purple Nipple Greeter (Day 49)

They’re heeeeeere!  And they’re purple-ish.  The photo doesn’t do the color mismatch justice.

05/02/12 – Prosthetic purple nipples

I don’t want to get too involved with these nipples.   I also don’t really want to establish strong feelings or opinions about these because they’re only serving as a mock-up for my most likely to be reconstructed nipples.  I got this idea from another woman’s blog.  She had a bilateral mastectomy and delayed reconstruction after radiation and chemotherapy.  She didn’t want to do nipple reconstruction because she was just tired (understandably so).  So she wore these for almost a year and ultimately decided to do the nipple reconstruction. That being said…

I ordered “dark” thinking that meant a pigment closer to my own.  But these have a very, very purple tint to them.  And the “nub” part of the nipple is like a pencil eraser.  I don’t think reconstructed nipples would stand this proud.  It’s like it’s constantly below freezing where ever they manufacture these bad boys girls.

Anyway, enough of my purple nipple bashing.  I’m going to wear them, look past their faults, and see if I like them.  I think I like the idea of the nipple reconstruction and areolar tattoo, but I want to be positive.  I had a chance to look at a few areolar tattoo photos when I first met with Dr. Louie at my consultation so long ago, but I’m not sure if those were photos of Dr. Louie’s patients or just general stock photos that a lot of reconstructive surgeons have as exemplars.  These are little things that can be addressed at my pre-op visit in June.  I’m sure, by then, I’ll have a lot of other only semi-relevant crazy things to rattle off at that time.  Here’s hoping I tone down the crazy before that time.

Today I had my follow up physical therapy appointment at Seattle Cancer Care Alliance.  I gained 30 degrees of rotation on my left side and less than 30 degrees on my right side.  I would be able to remember details about both sides if I didn’t focus so much energy and fretting on my left side.  It’s kind of annoying; I’m aware of it.  But Rachel, my therapist, said that I am progressing well and that I may be able to return to gentle yoga classes after our next follow up visit.  I am going to continue to do all of the exercises, stretches and massage that she prescribed at my first appointment, and she also gave me three new stretches to add to my daily routine.  One is a yoga-like pose (sphinx pose) to help me stretch out my abdomen and hopefully release some of the scar tissue.  While the stretch itself is easy, the sensation of my abdominal scar stretching out is one that takes some getting used to.  It still is mostly numb but I have full sensation in patches.

Instead of my regular photos, I decided to try on my purple prosthetic nipples and share them.  Avert your eyes if you’re not keen on it.

05/02/12 – Prosthetic purple nipples zoom

05/02/12 – Prosthetic purple nipples in action

05/02/12 – T-shirt time

 

My Lovely Lady Lumps (Day 47)

This isn’t going to be the post I originally wanted to post. I started that post this morning and saved it as a draft, but something is going on with WordPress and I can’t do anything with my blog from my computer – but I can do a quick post from my iPhone. Apologies.

No ground breaking news today, other than I might have to invest in all new sports bras because all of the ones I currently own are painful to wear. The Noobs themselves are ok in the sports bras. They’re all a little tight and pull to one side (because my left noob is bigger than the right), but getting them on is a sweaty and uncomfortable 20 minute project. And then when I get one on, I start to get pins and needles in my left arm and feel like my circulation is being cut off. I want to go for a run, but I have to get myself into a good, fitting, supportive, new sports bra first.

My prosthetic nipples aren’t here yet. I wish they’d hurry up and get here because my pre-op visit for my nipple reconstruction surgery is creeping up on me. I want to put them on and see if I’m 100% sold on having nipples again. It’s been so long since I even remember looking at my own nipples.  I wonder if I’ll be put off by the prosthesis, or if it will look like the nipples are truly the missing piece to making these noobs look like designer imposters.

Thanks for following along during my journey. Sorry again for the short post. Hope to resolve my blog troubles soon. There’ve been way too many as of late.

Let’s Get It On (Day 43)

I wrote that title in the voice of Mills Lane, not Marvin Gaye.  I decided to make that the title of my post tonight with one of our daughters in mind; “Yaya”.  Today she decided to really put my noobs to the surgical quality test today.

Pre-surgery, Yaya had a habit of shoving her hand down my shirt if she was upset, scared, mad, bored, or awake.  She would pinch my boobs or give them a whack with the side of her hand when she was at a loss for something else to do.  After my surgery, our girls couldn’t even give me a normal hug.  I resorted to asking them to wrap their sweet little arms around my legs instead of the traditional embrace.  It was difficult for all of us.  We’re big, juicy huggers.  It was sweet relief when we were back to bear hugging it out.  It seemed that today Yaya realized that my noobs were no longer being given the eggshell treatment.  It started this morning when we were getting dressed for tumbling.  She didn’t want to get off of the changing table, so I picked her up, and she in turn went to pinch me and grabbed two-tiny-pinchers worth of noob.  When I didn’t immediately cry out in pain (like I did during early recovery when a drain was pulled, a noob bumped, or I was just awake), the realization struck her:  Mommy is no longer made of glass.

I scolded her and firmly said, “No pinching!”  But she’d already decided to move on to grabbing.  I picked her up again to head out of the nursery a few minutes later, and she put her hand down my shirt and squeezed my left noob.  No pain; just a weird moment because it didn’t hurt.  It didn’t feel like anything.  In the tissue closer to my chest wall, I can feel pressure.  But at the fattier parts of my noob, nothing.  I don’t have any sensation.  So for the rest of the day, it was like she was the quality control tester at the Reconstructed Breast Factory.  She poked, prodded, pushed, squeezed, smacked and, for the grand finale, head butted my noobs.  And you know what?  They’re still here, in tact and show no sign of falling off.

To get a little Marvin Gaye on everyone for a moment, they haven’t been put to the husband test yet.  I’m still a little timid about touching them myself.  Dr. Louie told me at my last appointment I could start gentle massages to break up the scar tissue in them.  But the amount of pressure I apply is maybe a third of the pressure Dr. Louie used when he was showing me how to do this. I also wonder if there’s much of a point to having them touched since I don’t have any sensation.  I know it makes perfect sense for Mike, the poor guy, but I mean for me.  I do feel the need to give him the green light, though, since my nipple reconstruction is not very far away.  When that time comes, it’s back to no man’s land during recovery.  What can I say?  I feel like a peach, but in all reality am probably closer to an apple.

In late breaking news, tomorrow has the potential for being either a monumental or disastrous day.  I’m going to try to workout with Paul again!  I have to do it.  I had so much rich, delicious food prepared and delivered to our house when I was recovering.  And then when I got the green light to get back on chocolate I did my best to make up for that 6 week gap without it.  Now with a good portion of the fat being nipped off of my belly (and made into noobs), everything I eat is sitting high on my hips.  And I WANT to work out.  I’ve missed it.  I made such big strides in my physical fitness leading up to my surgery, and it’s going to be a long road back.  So, now is the time.  Well, tomorrow is the time for that.  Right now is the time for music, and then sleep.

I’ll post pictures tomorrow!

 

Giddy on Up! (Day 42, woot woot!)

Apologies for late post; I thought my entry uploaded last night but received an email today and found out otherwise!  I’m having a hard time with my WordPress these past two weeks.  I will phone a friend for some tech savvy advice tonight!

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Oooooh, today.  Today we didn’t get to embark on a wild Pacific Northwest adventure because of this Seattle springtime drizzle.   It’s not bad, because it was kind of warm today, but the girls have out grown their rain boots and waterproof pants.  So, we kept it indoors today.

I’m still pretty tight and sore from our adventures in swimming yesterday.  I did my physical therapy stretches this morning before I got out of bed (because I woke up with the area around my shoulder and clavicle feeling tight).  I did go for my usual walk, and it seemed to fly by because my head was full of all things related to crazy.  I am having a hard time deciding on what to do, with finality in mind, about my nipple reconstruction.  I feel like since I’m still in the process, I should go for it and see everything through to the end.  Meaning that I would get the nipple structure itself made and not just have the areolar tattoo.  But I feel so ambivalent about the nub.

It would serve no purpose other than aesthetics, but right now I really like wearing shirts and tank tops as of late and not feeling like I need to put something else on because I have no nipples.  I am more sold on the areolar tattoo because I feel, that in my own eyes, my noobs look weird with just the Barbie look.  When we were at the pool yesterday, it was really my first time back in a locker room with other women.  I found myself looking around (and probably looking inadvertently creepy) to see if anyone was looking at me.  I feel like if I have the areolar tattoos, it’s less likely that my reconstruction would be noticed.  Does that make sense?  On the converse, I worry that the nipple sites as-is would be too large if I just had the areolar tattoo.  That’s a lot of surface area to cover, and I would definitely be Silver Dollar Shera.  (The nipple reconstruction surgery decreases the surface area of the nipple site.)

I also have a habit of thinking about the absolute worst-case scenario always happening to me.  It plagued me during the entirety of the build up to my mastectomy and DIEP flap reconstruction.  So, of course, the only thing I can focus on with nipple reconstruction looming ahead is that I will do something to injure them and they will both end up necrotic and fail or flatten out.  The Internet is no friend when it comes to counteracting pessimism.  It seems with every query, my web results are filled with bad news.  But it’s like watching the evening news, I guess.  You don’t hear a lot about complete successes.  I’m going to keep thinking about this, but in the interim I’m going to order a set of those prosthetic nipples and see if they change my mind at all.  I read the blogs of a few other women that said those helped them with the decision.  Here’s hoping $50 solves it for me as well.

Finally, I’m thinking about maybe only posting photos every other day or less.  Nothing phenomenal is going on with my flaps or scars, and right now things are just focusing towards nipple reconstruction.  I’m not sure if I’ll do it that little though.  I’m such a visual person and was so desperate for other women’s recovery photos when I was waiting for my surgery.  Time will tell.  Until them, I am picking myself up by the boot straps and trying to enjoy this time of feeling good, healthy, and getting my strength back before my next procedure.  And wrestling with my two little girls as much as possible!

Giddy on up, ladies.

 

Daily dose:

04/25/12 - Frontal

04/25/12 - Flaps

04/25/12 - Abdomen

04/25/12 - Right

04/25/12 - Left

 

 

Somethin That Means Something

Tonight’s the night babies! Look at me getting ready to be filleted tomorrow morning! I’ve been meaning to sit down and write, at great length, about what a complete shit show I’ve been the past two days. But I’ve been busy being a shit show. Monday was the last day of my “regular” eating because today I needed to eat only light foods that are easily digestible so I don’t have to have a super sexy enema first thing tomorrow. HOT! So on Monday I really got wild and had the mini tacos from Rancho Bravo on Capital Hill. Today I’ve had bran muffins, bran cereal, fruit salad, a baked chicken breast and some couscous. I feel like a geriatric on death row. I also had a chance this morning to work off some of this anxious energy this morning with Paul, my trainer. He took it easy on me, but it was good to work some of this crazy out before I continued on with my day. I spent the rest of the day trying, mostly, to feel really prepared to leave our girls for 5 days and have someone else care for them. Sad. We hung out at home, my friend Haydn braided my hair for me so it’s out of my face for surgery, and then I spent as much time with our girls as I could before their bedtime. I tried not to be too anxious or weepy around them because they already know something else has turned me into a crazy ass this week. And that’s not what I want. I want them to be happy, carry on with their days, and miss me a little bit…but not miss me like I’m going to miss them.

I check in at the UWMC Surgery Pavilion tomorrow morning at 5:30 a.m. Before that time, I need to finish packing my surgery stay bag, find something to put on my Kindle, figure out a way to smuggle my phone and charger in with me, as well as lozenges (for the sore throat post intubation), a toothbrush, a red velvet cupcake from Trophy, and some lip balm! Apparently I can’t take any of these things with me because they’ll “get lost” while I’m in ICU for the first 48 hours. I take this to really mean, “Someone here is a kleptomaniac and will steal your breath from your sweet lips while you sleep if they can. We don’t care to find out who that someone is. Also, no pictures.” I can’t remember the last time I’ve gone more than an hour without my lip balm. Do you think I can pay someone to apply it for me whilst I’m under? I’m less than 8 hours away from my check in time and I’ve obsessed over the many other things in my life so much that I’ve now narrowed it down to worrying about lip balm and smuggling electronics. Let this be a good thing.

I feel like I’ve dedicated enough time to mourn the boobs, worry about this being my first surgery, and worry about my family’s well being while I’m in the hospital. Will I feel like this in the morning? I don’t know, but it’s where I am right now and I’m just trying to go with it.

Please ask the universe not to let any freak accident, Grey’s Anatomy season finale type shit go down during my surgery. I am full of life and doing this to live a LONGER and HEALTHIER life. Smooth sailing only. Quick recovery included.

I won’t have my phone while I’m in the ICU, so I won’t be able to easily contact or communicate with anyone until I’m moved into the regular recovery unit. So, until that time, thank you so much to my friends, family, and everyone for your kind words of support and encouragement. Thank you to everyone who has brought us food, volunteered to help with our girls, offered to come over and take care of me, or anything else that I’m forgetting. Thank you to everyone who didn’t notice me giving you creepy “goodbye boob hugs” and squeezing a little too hard and too long. Or thank you for noticing and not caring, or being kind of into it and just letting it happen.

I wanted to say something meaningful here before this part of my life (natural boobs) was over and the next part of my life (no more than 7% risk of breast cancer!!!! + reconstructed boobs) begins. Hopefully I’ve achieved that much with my whopping 6 (or 7?) posts. If not, stay tuned. I’ll come up with something. And if you come see my husband and my girls while I’m still in the hospital, tell them “Shera/Mommy loves you!”

It’s Just Another Manic Monday

And Tuesday.  And Wednesday.

Monday and Tuesday were two totally crazy, emotional roller coaster days.  On Monday, I went to Seattle Cancer Care Alliance to meet with my surgical oncologist, Dr. Sara Javid, to discuss her portion of my surgery – the bilateral mastectomy.  Dr. Javid has a great bedside manner.  She’s very petite (and pretty), and she comes across as a neatly packaged powerhouse of kindhearted genius.  This appointment consisted of reviewing my medical and family history with Dr. Javid’s surgical resident, her answering my litany of questions regarding the surgery, and a talk about the mastectomy itself.  I will not go into the list of questions I asked Dr. Javid (or the P.A. I saw at the UWMC); I will post them separately.  The things that I feel were most important to me were:  a) how they would screen my breast tissue once it was removed (and when we would get results), b) what would happen if there was early cancer found in the breast tissue, and c) what part of the mastectomy would cause me the most post operative pain.

Dr. Javid explained that once all of my breast tissue was removed, it would be sent offsite for pathology.  The pathologist would then take multiple slices of the breast tissue, view them under a microscope, and look for cancer cells.  I can expect my pathology results within 6 to 10 business days.  If there are any signs of early cancer, then Dr. Javid and I need to meet again to discuss and schedule axillary dissection and removal of my lymph nodes.  I wouldn’t be able to have the sentinel node biopsies, like women who have not yet undergone the mastectomy, because the dye that is used for that screening is rendered ineffective after mastectomy.  So my lymph nodes would have to be removed and screened in pathology.  Whatever the results yielded would dictate my treatment plan from that point forward.

Dr. Javid said she believed the most postoperative pain related to the mastectomy was the tissue removal from on top of the pectoral muscles.  Since her goal is to remove the breast tissue as completely as possible, and reduce my risk as much as possible, she will basically scrape breast tissue from my muscles.  Yummy, right?  Other than that, the majority of my pain will relate to the reconstruction (because my nerves in my breasts are being removed with the tissue).  The J.P. drains are a well-known foe to post surgical comfort.  I’m sure you could go through innumerable blogs similar to mine and find an ark full of complaints about the discomfort of the drains, the stitches that hold them in, and the seemingly never ending, immeasurable length of the drain tubes inside the body.  I think in my recovery posts I shall refer to them as “ye old dreaded drains” (or maybe just “dreaded drains” in the interest of brevity).

After that, Dr. Javid and I briefly reviewed the potential incisions for the skin sparing mastectomy, and she also double checked with me that I was positive that I do not want the nipple sparing mastectomy (and I still don’t!).

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I was truly disappointed to find out at my appointment that I wasn’t meeting with the surgeon performing my DIEP reconstruction (Dr. Louie), but was instead meeting with his P.A., Jennifer Flannery.  I don’t mean to come across as I need to see THE surgeon himself or no physician at all – it just would’ve been nice to be told in advance that I wasn’t seeing my surgeon.  Why?  I don’t know, exactly.  Maybe it’s because I’m looking for any and every familiarity and comfort in this situation; maybe because consistency is really convincing; or, maybe because I’m freaking the hell out that the countdown is on and this is a very big deal to me.

After the requisite introductions and preliminary questions, I had a brief physical and then started in with my questions about the DIEP flap reconstruction.  I was surprised that in this meeting was the first time I was told that if the blood vessels (the “deep inferior epigastric perforators”) were awkwardly situated or too difficult to retrieve without removing part of my abdominal muscle, then the surgeon would go ahead and remove a small portion of my muscle in order to retrieve the blood vessels.

This is why it is a good thing to be hyper vigilant and semi-neurotic (full blown neurosis gets your surgery cancelled) about researching your surgery.  In all of the other blog posts, videos, forum discussions I’ve come across during my personal research and preparation, I hadn’t read that this was a possibility.  So while the purpose of the DIEP flap reconstruction is to keep the abdominal muscles intact, it is still a possibility that a portion of the muscle has to be removed.  This, obviously, would impact recovery time and the integrity of the abdominal wall.  Bummers.  Something else that I was unaware of:  the surgeons will have to drill small holes in my ribs to connect the DIEP vessels to the blood vessels in my chest.  Jennifer told me that the holes were not of significant size to worry about the integrity of the ribs themselves, but this part of the procedure does cause an increase in post surgical pain in the chest.  According to Jennifer, the majority of my pain will come from the hip-to-hip incision made on my abdomen for the fatty tissue and DIEP flap.  There will also be discomfort when trying to stand straight up, which may take some time to do.  The other bummers:

1. There is no quick road to recovery.  I’ll be down for at least 2 weeks, very likely 4 weeks, but should plan on 8 weeks of completely depending on other people for help “just in case”.
2. I won’t be able to pick up anything weighing more than 5 lbs for at least 4 weeks.  My daughters each weigh at least 26lbs.  My cat weighs 8 lbs.  My hand, where my middle finger resides, thankfully weighs less than 5 lbs.
3. I have to be medically cleared for any exercise other than walking.  Running, jumping, cycling, weight lifting, plyometrics, punching people in the face…all off the table for at least 3 months.

Also a surprise:  I didn’t know until poking around on the Internet today (the day after my meeting at the reconstructive surgeon’s office) that Jennifer Flannery handles the areolar tattooing after nipple reconstruction.  I assumed that Dr. Louie didn’t do it, but I didn’t know that Jennifer was the lady in charge of this part of the reconstruction.  Had I known, I would’ve hit her with all of my questions regarding that “little” procedure.  Like:

1. How best to get a pigment match for my areolar tattoos?
2. How is my pigment determined and matched for the areolas?
3. How frequently will I need to have the tattoos touched up?
4. Exactly what color(s) do you think make up a Buttery Nipple?
5. Do you lean more towards the quarter or the silver dollar?
6. Do you want to take pictures of my natural breasts and pigment for a match and comparison?
7. Are you sure you don’t want to take reference pictures?
8. How about if I take reference pictures and bring them to you?
9. What amount is a good amount of reference pictures of my natural breasts?
10. Are you sure?  Are you sure?  ARE YOU SURE?!?

I would also like to note that I have made some really fantastic strides in my strength, health, and fitness these past six months with my trainer, PDiddy a/k/a Paulie Walnuts, a/k/a Pauly Shore, a/k/a DJ Pauly D.  (But he prefers to go by Paul Won.)  I told him when we started working out together about this surgery, and that I wanted to be as healthy as possible before I went into it.  He helped me achieve this and so much more.  I lost the last nagging 20+ lbs of my pregnancy weight.  I can finally do pull-ups.  I can jump atop plyo boxes without killing or severely injuring myself.  Today I broad jumped 7 feet for the first time ever in my life.  I achieved all of these things with his help.  And after my surgeries, I’ll pretty much be back at square one.

So, I left my appointments at the UW more than a little disappointed and very sad.

I love taking care of our family.  I get an all time high hugging our daughters, squeezing them, even carrying them around and wrangling their octopi limbs down during a temper tantrum.  Every single one of my days revolves around them and I absolutely love that about my life.  I love feeling and being physically strong and independent.  Hearing, yet again, that I need to plan on not being able to do these things and feel very differently for a couple of months is upsetting, to say the least.  So while I’m saying goodbye to my “natural breasts” and to my very high risk of cancer, I’m also saying goodbye to these parts of my everyday that I love so much.  Ergo, the sadness, the disappointment, the fear, the bummers.

I have a case of the bummers.

Dream a Little Dream

Last night I dreamt that it was the day of my surgery.  I was already checked into the hospital and in my very glamorous hospital attire.   I was surrounded by family, a few friends, and a random selection of people that I recall flashing my pert, early-to-mid 20’s boobs in order to be cast on an MTV show.  (Not really, but kind of.  It could happen.)

In my dream, however, there next was a very devastating moment.  We were all embracing.  I was going through the assembly line of emotional supporters, taking in words of encouragement and well wishes.  Everyone in my family was telling me everything would be “ok”.   Mike was telling me that he loves me very much and that our girls were being very well taken care of and safe at home.  Then a guy that I had a somewhat deep, unrequited love with in my early 20’s told me (jokingly), “Don’t worry about losing your boobs.  They’re on their way out anyway.  It’s a good time to swap ‘em out.”

Now that I am awake, lucid, and recalling this dream, it is funny.  This is something that I am truly learning to love about myself.  That no matter how anxious, emotional, and neurotic I get, my sense of humor pops up.  I think it’s a fat-kid defense thing that has survived my many attempts at self inflicted, permanent brain damage.  I like that amidst being in the throes of this very strange, very emotional and scary dream last night, my subconscious lets a joke through.   And, also, that I tried to tell myself that I don’t need to totally mourn my boobs.  Because, honestly, the air went out of the tires once I started breastfeeding twins.

By having this prophylactic bilateral mastectomy, I am moving on to something better. But right now it doesn’t feel better.  It feels scary, intimidating, and like a breeding ground for a whole new level of self-image insecurity.  I am worried about the pain of both the mastectomy and reconstruction, as well as the effects (and side effects) of being on pain medication.  I am worried about the seconds, minutes, hours, days, weeks that I will not be able to hold on tight to my daughters, hug them, pick them up, or play with them.  I am sad about missing the leaps and strides that they are taking every single day in growth and development because I’ll have to rest my body,  “take it easy,” and not go with them on their regular, somewhat mundane, daily outings.

I hope that while I am stuck at the hospital recovering, missing my family, trying to not to freak out about being alone in a place that I dread, wishing pain and discomfort away, that my drug addled mind (please, please, please let it be drug addled!) let’s one of these quips slip out.  They say laughter is the best medicine.  I just hope it isn’t one of those crazy, riotous types of laughter.  Because I’ll have just had a good portion of my anterior plane sliced and diced…and the last thing I want to do is split a stitch up in this bitch.  Oooh, snap.