Stage 2 Details (graphic pic)

I had my Stage 2 on Friday, and I’m just now getting out of the anesthesia fog enough to keep my eyes open for more than a half hour.  As my gut told me, Stage 2 did not go all perfect and easy as I was told it would.  First of all, Dr Gimbel was running rather late.  I got to the hospital at 9am for my 11am surgery.  It was closer to 1pm when I was taken back to the OR.  This sort of thing doesn’t really bother me (other than the fact that I was starving since I hadn’t eaten since 6pm the previous night).  I see it as a good thing – he is taking care of his patients, taking his time, doing what’s necessary.  I don’t mind waiting for that, especially since I know he will take his time with me to make sure everything is as perfect as possible.  But my husband – this drives him crazy.  There were many occasions when our OBGYN was more than an hour late for our appointment while I was pregnant.  Despite trying to explain to him that she was probably helping someone deliver a baby, he still got very frustrated at this.  And his frustration with Dr Gimbel definitely added to my own stress over the whole thing.  Eventually, however, Dr Gimbel did come in and made his drawings on my body.  I was then visited by the anesthesiologist, and soon taken back to the OR.

When I awoke in recovery, my mom and husband were there.  It was almost 5pm.  My mom left to go pick up my son, and my husband stayed with me.  The nurses were great, but they clearly wanted me up and out of there.  Within only a few minutes, I was moved into a chair. Then the bed disappeared.  I was given a cup of apple juice and before I knew it, the wheelchair was there to take me to the car.  I definitely felt pain in my abdomen.  I felt a bit of pain underneath my left breast, where I assumed he’d made a cut into a part of my skin that wasn’t already numb from the original surgery.

When we got home, my parents were having dinner with our son, and I went upstairs to get into bed.  When I took off my shirt, I noticed a blood stain on the surgical bra underneath my left breast.  It was wet and clearly growing.  I took a picture and sent it off to Dr Gimbel, then also called the plastic surgeon resident on call.

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While I waited for their responses, I was kicking myself.  Hadn’t I predicted that this wouldn’t go well?  Hadn’t I told myself that it wasn’t worth it  to have surgery for purely aesthetic reasons?  I of course began to envision the worst, and imagined my husband taking me back to the hospital to have more surgery.  But when the resident called, he coached me through removing some of the bandages to check for active bleeding.  When I did, I could tell that it was really nothing.  The bleeding had stopped, nothing was open, and he said this was completely normal.  I also received an email back from Dr Gimbel explaining the same thing.

I didn’t see Dr Gimbel after the surgery, but my mother reported to me that he had explained to her that while the breast part went well, he had to do more abdominal work than I think he originally planned for.  I had asked him to try to smooth out the major drop-off from my belly, and I think he was able to do that, but it meant opening up the entire hip-to-hip incision again.  So even now, three days later, I am still extremely sore.  I also have a few spots where I feel burning – like a paper-cut, under my left breast and in a few places on my abdominal incision.  While I’m comfortable laying down and I’m comfortable standing up, it is very hard to sit down and to get up from being in bed or sitting on the couch.  It’s definitely not as bad as it was after my DIEP surgery in January.  I’d say right now I feel like I did about two or three weeks after that surgery – sore, but at least able to do things for myself.  Once again though, I am not allowed to lift anything heavy, and that means my son.  This is a bit tricky since he is on vacation from school for the next two weeks.  My parents are going to take some shifts with him, and one of his teachers will come to babysit for a few of the days.

I’m definitely happier with my breasts – they’re higher, more solid, and a bit smaller, which is what I wanted.  I haven’t taken a really close look (I showered yesterday, but there was still a lot of gauze stuck to the glue that’s holding the incisions together).  I can’t say they seem perfectly symmetrical (although who has perfectly symmetrical breasts), but I’m also guessing there’s some swelling that will have to calm down before I can really tell what everything looks like.

Stage 2 Begins

Today has not started off that well. Big fight with the hubs. No coffee, no food, no antidepressants- that’s not helping. Been teary since I woke up, worrying about what happens to my kid if I don’t come home from this surgery. Sure, I’m probably being dramatic. I don’t know how many people die while having minor breast reconstruction, but surely it’s not a lot of people.

I took my shower with antibacterial soap- one of the dumbest things I’ve ever heard of. I understand they want me to be clean, but after my shower I usually spend at least five minutes sitting on my cat-covered bed playing with said cat, then probably a half hour playing with a two-year old who is anything but antibacterial. So I wonder how much affect a shower in Dial soap really has other than to make me itchy for the next few days.

We dropped off our son at school and I managed to hold it together while saying goodbye to him. He loves school so it made me feel good to leave him there. Much of the car ride to the hospital was in silence – only about a mile drive anyway.

And then, once we got out of the car, I lost it.

All I can ask myself is why? Why am I doing this? Previous two surgeries – life saving most likely. But this? Why am I risking not seeing my little boy again? Risking him being motherless? What sort of happiness am I hoping to gain from more symmetrical breasts and a flatter stomach?

I feel like I was sort of suckered into this by all of the research I’ve done. If you have DIEP, then there’s always a stage 2 surgery. Always? I can’t think of anyone I know who hasn’t had a second one. All of the doctors talk about stage 2 before you’ve even had stage 1! Does no one come out of stage 1 happy with what they have? I’ve had it in my head since January that I’d be having stage 2. I don’t even think I stopped to really consider if I wanted it (this is probably not the best time to start that thought process).

So I’m laying on this pre-op gurney, definitely making it all germy by using me cell phone to write this blog post (but hey, good thing I took that antibacterial shower!). And I’m wondering if I actually have the guts to back out of this. Would I regret not doing it? Or do I have the guts to go though with it? I don’t even know anymore.

Ugh- someone needs to just come knock me out already.

What Does My Gut Know?

Last year on this day, I was at Magee Women’s Hospital getting my yearly mammogram.  I wasn’t nervous – I’d done this many many times and, because at the time I had just turned 36 years old, I knew I’d be fine.  Even though I am BRCA2+, I didn’t expect to even think about cancer until I was at least 40, and by then I knew I’d have had a preventative mastectomy and it would be a moot point.

After the mammogram, I sat in the waiting area while the radiologist determined if I needed to have any more films.  When the technician came to get me and said I would be having an ultrasound, my gut kicked into high gear.  I knew right then and there that I was in trouble.  And I was.  After some more films and an ultrasound, the radiologist showed me the areas of micro-calcification in my right breast, and I scheduled a biopsy.  There was no doubt in my mind what the biopsy would reveal.

Luckily, it wasn’t as bad as it could have been.  The biopsy revealed pre-cancerous cells (DCIS).  Nonetheless, as someone who is BRCA+, I knew that my life was about to change in drastic ways.

Since this day last year, I have had a bilateral mastectomy with DIEP reconstruction, a complete hysterectomy with oophorectomy and salpingectomy, and tomorrow I go in for what will hopefully be my last surgery – some nips and tucks to revise the original breast reconstruction.  Strangely, my gut is telling me this is a bad move – that I’m pushing things, I’m asking for too much.  After two perfect surgeries, why go in for more, especially when it’s solely aesthetic?  I feel like there’s too much of a chance for something to go wrong – my biggest fear, like the last two times, is the anesthesia – what if I just don’t wake up?  And what if I don’t like the result this time?   Do I go in for even more plastic surgery?

Regardless, I do feel like I need some closure with this whole thing.  So, I’m going to allow my brain to supersede my gut on this one.  As I did before my previous surgeries, I will use today to relax, listen to my pre-surgery guided imagery, and just enjoy the day.

Before I head in for the surgery, I do want to give a message to all (three) of my readers:  Anyone can manage his/her own risk of breast/ovarian cancer.  Genetic testing, genetic counseling, screening, surgery – whatever you choose, we all have the power to manage our own risk.  Doing so will save your life – it saved mine!

Mommy has a boo-boo?

To say my 2.5yo son is obsessed with trains would be an understatement.  He can spend hours in his playroom  building tracks and having conversations with Henry, Hiro, and all of his other Thomas the Train friends.  But every now and then, he does decide to venture to other areas of the house.  He did this yesterday morning when he asked to come upstairs while I got dressed after my shower.

“Mommy has a boo-boo?” he asked, when I took off my robe.  I had to choke back tears at this question.  This little guy was so concerned, and really, I wasn’t even sure what he was referring to.  The scars on my breasts (does he even have other breasts to compare)?  The hip-to-hip incision scar?  The scars to the sides of my belly-button from the laparoscopic surgery?  The various red areas where I’ve placed and removed estrogen patches?  He has seen me with various cuts or bruises on my hands or legs – he always asks if he can kiss it to make it better, just like I do with him.  But this was probably a horror show!

It’s always been our practice to respond to our son honestly.  He asks a lot of questions – a lot! – and I love that about him.  When he asks where the moon is during they day, I don’t say things like “moon went by-by” – I explain to him how the planets spin and why we can’t see the moon during the day and instead see the sun.  I never just say “because” in response to a question – I always give a full explanation.  My husband does this too, and because of it, our son is inquisitive and has what I think are exceedingly strong verbal skills for his age (I’m sure most moms say that, but it’s true for him!).   But I didn’t know how to answer this question.  While I was recovering from DIEP almost a year ago, he didn’t know more than five words.  So, while I had to explain to him that he couldn’t jump on me or that I couldn’t lift him, he wasn’t able to respond with questions or express any curiosity.  And, I made sure to do all of my dressing and undressing behind closed doors.

Yesterday morning, my instinct was to explain that I’d had surgery so that I wouldn’t get sick, but he’s only two – I didn’t want to scare him.  I didn’t want to mention doctors or anything that might make him afraid to see his own doctor (especially since he might be having eye surgery soon, and he also has his first dentist appointment next week).   This interesting article was published this summer, discussing why BRCA+ moms and dads should talk to their children about their genes; the woman in the story talks to her daughter about BRCA when her daughter is 12.  Watching In the Family with adolescent children would also be a good option.  My cousin, Alisa, has written a beautiful essay on this topic: it’s featured here on the FORCE website.  But again, her daughter was a bit older than my son when she asked the question.

I know there will be a time when I’ll have to explain BRCA to my son, but I don’t think this is really it.  One day, he will see me in a locker room at the pool and he will ask why other moms have nipples (although perhaps he won’t use that word) and I don’t.  One day, he will ask directly about the vicious scar across my abdomen.  But at 2 years old, this isn’t the right time to explain all of this.

But I did want to be honest.  So when he asked me about my boo-boo, I told him, “Yes, mommy has a boo-boo, but it doesn’t hurt.”  “Doesn’t hurt?” he asked. I repeated that no, it didn’t hurt.  I didn’t ask if he wanted to kiss it.  I just waited until he said “Ok” and toddled back into his own bedroom, and I finished getting dressed.

On Friday I will have my second (and hopefully last) stage of breast reconstruction.  And over the next few days, I’ll be thinking about how I can answer the questions my son will have that he wasn’t able to verbalize during my last recovery.

 

Preventive Guidelines Discriminate Against Cancer Survivors

facingourrisk's avatarThoughts from FORCE

FORCE has created a change.org petition to ask the United States Preventive Services Task Force to change their guidelines to include cancer survivors. You can read more about the issue and the petition below.

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The United States Preventive Services Task Force (US

The panel wields considerable power over consumer access to preventive health care services—primary care clinicians and health systems follow its guidelines. And importantly, the guidelines are incorporated into the Patient Protection and Affordable Care Act (PPACA), which states that health plans must provide benefits without imposing cost-sharing (i.e., without a deductible or co-pay) for services that have a rating from the task force of “A” or “B.”PSTF) is a government-supported independent panel of experts that reviews and develops recommendations on select preventive health services. In the panel’s own words: “The USPSTF is committed to improving the health of all Americans. To achieve this, the USPSTF…

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