Heroes & Villains (DAY 89!!)

Oh man, I can’t believe that I’m at day 89.  In so many ways it feels like that is such a big number to be post-op from stage 1.  In other ways, it feels like my Stage 1 surgery wasn’t so long ago.  But, here I am, nearly 2 weeks from my last blog post, and so much has happened in life.

We took our girls for their first airplane adventure and had a very mini, my-side-of-the-family reunion in Las Vegas.  I was born and raised in Las Vegas.  My mom, two out of three sisters, and our brother still live there.  My Grandma, who spent a lot of time dealing with us in our prime-pain-in-the-ass-kids time moved away about 13 years ago and I hadn’t seen her since.  Well, Grandma managed to hitch a ride back to Vegas with her brother for a few weeks, and it was our shot to get all of the great grand kids together in one place for a weekend to see our Grandma.  It was fantastic, bittersweet, and much too brief.

4 Generations

We came home on a high note, and it just sank in how precious little time we have with our loved ones.  After every visit with our extended families, I think about how much more comforting the days must be for people who are surrounded by their parents and siblings.  It is difficult to explain, and even sometimes understand, why the love and comfort of family is so different from that of friends.  I don’t know how to explain it to anyone else, I just know that it feels SO good and, when we’re all together, I feel whole.

Anyway, we came back home and it seems like the pace of life increased exponentially and the projects just keep cascading one on top of another.  Our girls just started going to preschool 1 day a week.  It’s a huge change for all of us.  But mostly me.  I am trying to overcome my helicopter mom extraordinaire nature, and I’m also trying to work P/T from home.  So, while I would love to keep these little lovelies all to myself, I realize (and appreciate) the lunacy in such a scenario.  It’s also helpful to have a full 6 hours to focus just on work.  Whether that be work to be done for an employer or work around the house, it must be done.  And 6 hours is really no time at all when it comes down to it.  Just as quickly as those 6 hours have gone by the past two weeks, the time before my next surgery is quickly falling through the hour glass.

Stage 2&3 surgery is on June 22.  I’ll be rocking some baby carrot sized, newly minted nipples for a few months until they settle and shrink down.  After that, I will have to wait until my “newpples” are healed and settled, then we move on to areolar tattooing.  These last few stages pale in comparison as far as pre-surgery anxiety to my Stage 1.  Occassionally I go back through this blog to see how I’ve progressed and just reflect on this experience.  I was so incredibly afraid of the unknown.  Nothing that I read back then and nothing that anyone told me eased my fears.  I also think it is so interesting how I was so worried about “losing” my natural breasts and having the noobs.  While the loss of sensation is a bummer, I don’t have any of the feelings of loss I thought I would.  I was worried about my husband not looking at me or my body the same; I was worried about how this body would feel to me with the lack of sensation in my breasts; and, I was worried about the aesthetic result of my reconstruction.  With all of these things constantly fluttering around in my mind, I was my own worst enemy most nights.  As it turns out, all of these worries were, mostly, for naught.  I do get a little sad that when I hug someone, it feels like there is a balloon or a large pillow between us.  Like there’s an embrace but with a little bit of a gap between me and my hugger. And these noobs look great.  They’re still a work in progress, but they’re great.  So this time around I’m not worried about any losses, the aesthetic, anesthesia, or the care of my family.  I’m going in feeling strong and looking forward to be moving towards finality of this process.

Speaking of feeling strong, I just wanted to let other women simularly situated know that I am back at the gym with my trainer just a smidge away from full force.  In the past few weeks I’ve done box jumps, ran stairs, lifted heavy weights, and today I finally got to do a little bit of boxing.  My trainer and I are both mindful of how I’m feeling and whether getting back to these things is causing me discomfort or causing me pain.  And while getting back into shape is typically a pain in the (flabby) ass, I’m not having any pain directly related to or involved with my surgical sites.  I am going to keep at it for the next two weeks before I have to, again, reduce and modify my activities – but for the moment, it’s on.

AHOY!

06/07/12 – Frontal

06/07/12 – Flaps

06/07/12 – Abdominal scar

06/07/12 – Left side

06/07/12 – Right side

Think(ing) About It – Day 76

So the countdown for the next phase is underway.  Wish as I might, this is not the final countdown.  After I have my “newpples” manufactured , I’ll need to have areolae tattoos done once they (newpples) are healed.  I’m hopeful that will then be the end of my journey, but I know myself to be overly optimistic (if that is what you would call it) about these things.  I’d liken it to when my husband and I thought we could survive our first week (and beyond) with newborn twins without any support or help from friends, family, or a doula.  Or like how I thought I would somehow set a world record of sorts and recover from my bilateral mastectomy and DIEP flap reconstruction in 4 weeks (I mean fully recover).  So while you may read this and think, “Aaaah, so she knows better NOW!”, I do not.  I’m hoping that my loss of sensation due to the mastectomy will equal very little (if any) pain.  While I don’t know how much healing time freshly manufactured nipples require, I don’t foresee myself being as drained and exhausted as I was when I underwent my stage one surgeries.

Drs. Louie and Liu seemed to be of the same mind about my recovery time frame this go round when we had my follow-up/pre-op appointment.   The part that is driving me a little crazy is the evening out that needs to go on with my noobs and my abdominal scar revision.  My left one is fuller and bigger than the right, so the left noob will be lipo-sculpted (maybe?) so that it is closer to the size and shape of the right one.  I watch not a lot, but enough, reality television to know that liposuction is a mutha.  But I’m not having the last 20 years’ carbohydrates vacuumed out of me (’cause that shit doesn’t happen free of charge); just the last quarter’s excess noob. As for my abdominal scar, the corners are a bit puckered and dark.  I think Dr. Louie will do an abdominal scar revision to try to and improve the aesthetic of those areas and not much else.

As I told Drs. Javid, Louie and Liu (and anyone else who will listen, read, endure), I have had a really easy and excellent process so far.  Writing that and saying it makes me feel like I’m jinxing myself and something truly horrid will arrive at my feet (triple nipple, anyone?).  But, I have to air it out.  What I did learn after going through stage 1 is that talking about these feelings, neuroses, thoughts, et cetera really takes the fear out of the unknown.  So, thank you for enduring all of my Stage 1 crazy.  I will now shut up about it.  Strap yourself in for endless (well, like every 48-72 hours) babbling about newpples, areaolae, the triple nipple and the unforeseeable nooby future!

 

 

 

You know what is foreseeable?  THIS…

 

 

 

05/28/12 – Flaps

05/28/12 – L flap

05/28/12 – R flap

05/28/12 – Abdominal scar

05/28/12 – L side of abdominal scar

05/28/12 – R side of abdominal scar

 

 

 

 

 

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.

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!”

Lucky Star

Like almost the entirety of this past month, last weekend was a little less crazy, still emotional, but with a side of acceptance and a heaping helping of gratitude.

On Friday I went to Nordstrom to get fitted for my post surgical camisole.  My breast oncologist (Dr. Javid) wrote me a prescription for this top, which is a combination compression top, mastectomy bra, drain holder, and camisole.  In case you were wondering, it is almost exactly 0% sexy.  I went to the lingerie section of Nordstrom and was taken back to their secret sad-story lair.  It actually was quite nice (and not really all that sad), private, full of breast cancer survivor magazines, all things pink, and very much related that very popular trademarked purpose, which I shall not mention because DON’T SUE ME.  I had a choice between a top that zipped down the front and one that I could step into and pull up to my body.  Since I’m having the DIEP reconstruction, the zippered cami was really the only viable option.  I understand the other top is a very good option for mastectomy patients, but I’ll have the large, hip-to-hip incision and drains which I don’t think I could manage pulling a compression garment over.  The private sales woman was very polite, helpful, and not too “Oh, I’m so sorry you’re here” faced.  She filled out all of the paperwork so that Nordstrom could bill my insurance directly, and she also let me know that my insurance would pay for three new bras after my surgery (and Nordstrom provides a free fitting).  I was really quite surprised and pleased that Nordstrom provides this service.  I didn’t know Nordstrom had a Prosthesis Program and was glad that such a service exists.

But, of course, the emotional kicked in when I was standing there waiting for the sales woman to come back with my paperwork and I thought not about myself, for once this week, but about my sister.  My sister, Alyssa, had the support and resources of her husband, her oncology center, and a plethora of physicians and nurses during her surgeries and treatment.  Alyssa is married to a pretty amazing man.  I know that he went with her to as many appointments as he could manage (with his work and their family to tend to).  A parade of family supporters (her mother-in-law, our mom, and our two older sisters) was able to go, to Idaho to help her and the kids, but I couldn’t go.  I couldn’t be there with her for any of her journey, to help her, hold her hand or empathize, like she is going to be able to for me.  At the time of her diagnosis and treatment, I was a brand new mom and, as much as I wanted to, I couldn’t pack the newborn twins in the car and head to Idaho to be with her. So, standing there in Nordstrom’s lingerie section, I thought about how isolating this feels and how I hoped that she never felt alone during her process.  Because, while there are hundreds of thousands of women who go through a version of this process every year, it can feel like you’re an island.  I hope my sister, or any other person going through something similar, never feels like that.  Alone.  Isolated.  Even I felt a little twinge of that standing in the middle of Nordstrom, looking at fancy underthings and butt floss that I couldn’t even begin to figure out how one would get on.

I also thought about how different it’s going to be when I come back here to buy new bras.  I often wonder if I’ll be self-conscious about my scars and how my reconstructed breasts will look in the women’s locker room.  I wonder if, when they’re older, my girls will ask to see my scars and reconstructed breasts and if I’ll be brave enough to show them.

And, here again, is when I think about my sister.  I think about how grateful I am that she was diagnosed at such an early, treatable stage of breast cancer.  About how painfully lost I would be if this disease took her life instead of her breasts.  I think about when I saw her after she was done with chemotherapy and recovered from her mastectomy and hysterectomy, she showed me her scars.  She was a little bit shy, a little slack in the shoulders, and maybe a little self-conscious.  She stood in my bedroom with her shirt off, changing her clothes, and said, “I look like a prisoner of war!”  I remember laughing at her joke and great sense of humor, but just wanting to sit there and cry for a minute.  I thought about telling her that she was still beautiful and amazing and more than her scars.  That day, I saw that she was there in front me, tactile, alive and well.  And I didn’t see her scars because I saw, instead, her life before me as well as her days full of vibrant, healthy life ahead of us, and it was one of the most amazingly beautiful sights I’ve ever seen.  I hope that I am able to see myself in this same light after all of this is said and done.

I am smart enough to recognize, and be eternally grateful, that I am lucky enough to be proactively removing my breasts.  I get a very rare chance to prevent breast cancer instead of treating breast cancer.  Too many women never have this opportunity.

Maiden Voyage

Like many stay-at-home moms, I have tried to figure out what I should be doing with all of this “leisure time” that I have during the middle of never, and blogging seemed like it might be an interesting adventure new to me and no one else on Earth.  I didn’t want to join the masses and start a blog that was simply a sounding board for all of my gripes, moans, Pinterests, and things I would say to myself anyway if I didn’t have a blog.  And, just as I needed an exposition for this blog, things happened in life and the answer to, “What should I bore people about?” revealed itself.

On February 18, 2010, my sister, Alyssa, was diagnosed with stage 1 breast cancer. As with everyone that loves, knows, or has known someone affected by cancer, this was devastating news.  At 30 years of age, Alyssa was (and is) unusually young to have breast cancer.  (I am beyond happy and thankful to report that she is very much alive and well, having finished her chemotherapy on June 7, 2010.)

Her team of physicians worked very well and very quickly with her because of both her age and the aggressive type of breast cancer she had.  Part of their initial work was advising that she have genetic testing done to see if she was a carrier of one of the “breast cancer gene mutations”, which she is.  Once Alyssa received her results as being positive for the BRCA1 gene mutation, her geneticist advised that our mother, me, and our other two sisters get tested.  As the odds have it, our mom and two of us girls have the BRCA 1 gene mutation, and two do not.

I decided this was the right time to start my blog for a couple of reasons:

1. The anniversary of my sister’s diagnosis is coming up in the next few days; and,
2. My prophylactic, bilateral mastectomy and DIEP flap reconstruction are a month away.

My initial purpose for creating this blog is to be a nuisance to others trying to hoard Google hits about breast cancer and images of boobies.  My second purpose is to allow other women who are considering either of these surgeries to preview the process from beginning to end.  I intend on blogging through as much of the process as I can, with the time immediately after surgery and initial recovery being the most questionable as to my ability to blog.  I hope to get my physicians’ permission to post photos and video about (and of) my surgery and recovery.

I will also post about how the surgeries and recovery impact my usually busy, everyday life.  As a stay at home mom to twin toddlers, there is going to be a lot of struggle to get back to 100%.  This is further complicated by the fact that Mike and I have no family in town, and we are going to have to rely heavily on a rotating schedule of caretakers for me and our girls.  How long and how hard these struggles will be are totally unknowable until I’m on the other side of it.  I hope that my blogging about these various experiences will help someone similarly situated, and maybe make some others throw up.