Nightmare before Christmas or the day that I decided to finally fire my plastic surgeon

In my last post I described my reconstruction surgery.  While I love my flat stomach and I'm grateful to have two boobs again, as I start to examine the work, I had some questions for my favorite plastic surgeon (PS).  For one, I am covered in scars.  I have a long horizontal one for the tummy tuck.  The boobs, well, let's just say I sort of feel like Sally from Nightmare Before Christmas:

What I currently feel like.  Perhaps I should get a Sally tattoo?

I had a check-up with my PS yesterday.  Here's a summary of our conversation:

Me: What are the next steps were as I continue to heal?  

PS (with a puzzled look on his face): What do you mean, "next steps"? 

Me: Well, the scars.  I look like a character out of Nightmare Before Christmas (yes, I actually said this to him.  I'm sure few of you are surprised).  

PS (condescendingly of course): There are no next steps.  I don't think you look like a creature but there's nothing we can do to hide the scars.  Don't worry, when we do the tattooing, you won't notice them anymore.

I hate him.  I've never liked this guy, but today I had my limit.  It wasn't so much his answer, it was the way he answered.  I take some responsibility for not asking more questions, but it never occurred to me that there would be so many scars.  And it's always been difficult to pull information out of this guy.  Some scars?  Sure.  Looking like a patchwork quilt?  No.  I was told time and time again that his work as amazing.  If this is amazing work, I cringe to see what non-amazing work looks like.

I wanted to say several things to him:  that he was a condescending asshole, that if the tables were turned and we were talking about penis surgery, I'm sure the scarring issue would have been resolved a long time ago.  Instead, I held it together until he and the rest of the team left the room and I lost it. I didn't want to give this guy the satisfaction of seeing me cry.

Thankfully, I ended up having lunch with a friend yesterday, which got me out of the house and was a good distraction.  As far as I'm concerned I'm done with him.  Time to find a surgeon that's willing to listen to me and help me out here.

I also had a conversation with a friend this morning who was recently diagnosed and is making her own decisions around treatment, double mastectomies and the type of reconstruction to get.  She had been leaning towards the exact same surgery and called me to talk about the pictures she had seen yesterday.  She had been horried by (wait for it)...the scars.  Her timing was uncanny.  She's working with another PS in the same office as mine.  I know somebody else that's working with this doc too and I've heard nothing but good things about his bedside manner.

At this point I feel like an idiot.  That being said, it's hard to ask questions of somebody that isn't that interested in interacting with his patients.  If I knew a few months ago what I know now, I would have asked a lot more questions.  Shame on me for trusting the opinions of other healthcare professionals.  Other than firing my PS, I'm not sure what else to do.  I just feel stuck and helpless.  The attitude seems to be, "this is what the surgery is."  Which makes me feel like I should just be happy to be alive and my breasts and the way they look now is just something I have to live with.  Which is bullshit to me.

This is a bit of a ramble and a rant and I apologize for that--I try to write more concise posts but my emotions are far too raw right now.  The good news is physically I feel great.  I get tired and I'm not ready to start exercising yet (nor am I even cleared for that).  I guess my future of outfits with deep cleavage and side boob and just going to have to wait until I get over my self-consciousness of the scars.  At least I can focus on wearing midriff tops now.  Sorry, my knee jerk reaction is to make jokes in times like these.

BIDMC: Come for the surgery, stay for the buttered haddock

I finally had my reconstruction surgery two weeks ago yesterday.  Boy was that rough.  Things didn't really start off well post-surgery.  The doctors were all gathered around me speaking their jargon.  My numbers weren't looking very good.  I asked for an explanation and was basically ignored.  I asked again for an explanation and was told by a woman doctor (which pissed me off even more--a lot of men surgeons are assholes but women are usually better) that they were talking "Shop talk."  EXCUSE ME????  That set me off to say the least.  So then the doctors were telling the nurse to give me some Ativan because I was becoming difficult and making the numbers worse.  She explained that I was becoming difficult because I was asking them questions and they weren't responding to me.  I'm sure there were notes written about me in my file after that.  I never saw the woman surgeon again but I did see the first guy several times throughout my stay.  Needless to say, we never really hit it off.  Fortunately BI sent out their survey which I filled out and provided a high level summary of this interaction.  I'll be disappointed if I don't get a follow-up call.

Those first few days I definitely was having doubts about whether I'd done the right thing.  The first few days were a blur due to the morphine I was on.  I hated the morphine--it didn't seem to be anything for the pain and I just felt stoned and out of it.    I've always thought I'd prefer meth or coke to heroin or morphine--I like things that give me more energy, not make me feel lethargic.  I have vague recollections of texting and/or messaging people.  I also have vague memories of watching shows but I couldn't tell you what happened.  I couldn't wait to get off of that, which I did around Wednesday.

The food at BI was terrible.  TERRIBLE.  Granted, I didn't have much of an appetite, but eating the food there didn't give me much of an appetite either.  Nothing sounded good.  There was some bizarre buttered haddock offering.  I wish I'd taken a picture of the menu as proof.

Thankfully, I went home on Friday, September 12.  I was so glad to get home.  Once the pain went away completely the middle of last week, I started to get really antsy.  I don't have clearance to drive yet so I feel cooped up.  I can't walk that far yet because I still have drains in and they tug and hurt.  And by far I mean I have yet to walk a mile in a single trip, but I'm told I'm acting like somebody who's five weeks along, not two.  I can't pick up the girls for four weeks.  All told, I should be back to myself in about six weeks.

The work itself looks pretty good.  I love the tummy tuck.  LOVE IT.  I don't have a lot of sensation in my stomach area, but there's no fat there.  AWESOME.  And my new boobs are a bigger size than I was expecting them to be.  I can't wait to go bra shopping.  And while I'm very grateful to have two boobs again, I feel like a character from Nightmare Before Christmas.  I'll save my thoughts on that, as well as today's interaction with my favorite plastic surgeon, for the next blog post.

Some updates and a movie warning

It's been almost two months since I've written on this blog.  As a reminder, my book review blog is alive and well.  A few recent events have inspired me to check in and share my thoughts on what's going on.

First, I just realized that I never posted about finally getting a second opinion on my surgery.  As you might remember from past blogs, like this one, this one, and this one, my plastic surgeon and I haven't always connected. I will say, I had my final check-in with him back in June and he was the most engaging he's ever been.  Anyway, I went to MGH to see a plastic surgeon that a friend of a friend recommended.  The surgeon was so nice, but it turned out she didn't do the surgery I was going to have and she strongly recommended....can you guess?  My plastic surgeon.  She did acknowledge that his personality wasn't the best.

At this point I've come to terms with it.  He does good work, I get it.  After next month, my interaction with him will be minimal to nonexistent.  I'm a little anxious about the surgery because it's long--12 hours or so.  And the recovery is painful.  I just need to focus on the tummy tuck and the new boobs.  Work has been great about giving me the time I need, but I have a feeling I'll be back online by the week after surgey.  Unless I'm in so much pain that I can't bear it.  It's totally professional to send out work emails and participate on conference calls while on pain meds, right?

On another note, I saw Guardians of the Galaxy a few weeks ago.  I saw this movie in Maine with Aaron, two of my nieces and my nephew.  The movie's opening scene is a boy listening to music on his walkman.  As the shot pans out, it's clear he's sitting in a chair in a hospital.  I got a little apprehensive at this point.  His grandfather comes by to say that his mom wants to talk to him.  His mom is dying.  Of cancer.  Cue my waterworks as one of my worst fears is presented on the screen (although I wasn't impressed by the makeup job on the mom).  Never mind that since becoming a mom I'm a total sap, please show one of the things I'm most worried about and I become a mess.  And this is a movie about aliens and other creatures.  We were in a dark theater and I didn't want to freak out my nieces and nephew, so the tears were just streaming down my face--I was able to contain my sobs until much later.  This happened at the beginning and end of the movie.  Holy crap, I wish I'd had some warning about that.

With this recent memory floating in my head, I had a bit of a scare this week.  Every time I have some ache or pain my mind immediately goes to the worst case scenario.  While in Maine, I got some stomach bug for the day.  I still don't know what caused it--I ran a 10k that morning and felt fine and got home from that and it went downhill from there.  Nobody else in the house was afflicted. I'd been having pelvic pain on and off for a few weeks and I finally reached out to my oncologist, who told me to reach out to the surgeon that had removed my ovaries.  We talked about my symptoms and she sent me in for a CAT scan.  She suspected it might be appendicitis or kidney stones.  During the CAT scan they kept asking me about having my ovaries removed and why.  It was strange and of course led me to think that they had found something BAD.  Why do they keep asking questions?

I waited the rest of the day for a phone call with the news.  I was trying to prepare myself mentally for the worst.  I never got a call back, so I called the surgeon first thing the next morning.  The staff was really apologetic and I finally got a call--the scan was clean.  Appendix was fine, no kidney stones, I was just a little backed up (sorry for the TMI).  Phew.  The NP did say I might want to let my oncologist know that they found a bony island in the scan and the oncologist might want me to get a bone density test.  The NP stressed repeatedly that this was probably nothing. I looked up bony islands and my stomach dropped again.  Sure they can be nothing, but it can also mean the cancer has metastasized.  I immediately emailed my oncologist and she responded within the minute letting me know she was not worried.  I'd just had a bone density test a few months ago.  Now I feel okay.

Which leads to my ongoing frustration about my post-treatment life: At what point will I stop assuming the worst?  Right now it feels like never.  Thankfully, I feel great most of the time.  But my mind can't help but go to the worst case scenario when I'm not feeling 100%.

One aside: The CAT scan technician was an Irish woman with a really thick accent.  I understood about every third word she said.  I thought she said she'd had breast cancer when she was 21 (I guessed her to be maybe a few years older than me now).  She'd had a mastectomy on the breast with cancer, but never had the other breast removed.  She had never been tested for the BRCA gene but there's a strong family history of both breast and ovarian cancer.  She told me I was really brave for having my ovaries removed.  Honestly, I was a little insulted.  I'm not brave--I'm doing what I need to do to put my mind at rest and not have to live in fear for the rest of my life.  I'm going to live in fear anyway.  I don't really find that brave.

Advice for the newly diagnosed

The other day I got a call from a friend:  Her 36 YO niece had just been diagnosed with breast cancer.  To make matters worse, she's 6 months pregnant with her second child.  I offered my phone number and whatever assistance I could provide.  It kind of got me thinking of what advice I'd give to my friend's niece or anybody else that has been recently diagnosed.  So here goes:

1. First of all, you're going to get through it.  It's not going to be easy, but you will.  You have a difficult road ahead of you.  But YOU CAN DO THIS.  Before you know it, this will be a bad, distant memory.  One that will shape and influence you for years to come.
2. Learn to ask for help.  This was a tough one for me, but it made a huge difference.  Sites like Helping Hands are amazing.  We were never in need of a ride, meal, or a favor.
3. You'll be amazed by the generosity of people.  People will want to help.  People that you hardly knew prior to going through this. On the other hand, there are going to be people that you thought would be there for you that won't.  Not everybody knows how to deal with your diagnosis.  Feel free to cut these people from your life.  If there's any time to reassess your life and priorities and who you want to spend your time with, it's now.  People will show their true colors.
4. You are your own best advocate.  Find the oncologist and medical center that's right for you.  I've known people that went to Dana Farber and loved it.  I've also known people (including myself) that didn't choose Dana Farber because everybody there has cancer.  For some, the idea of going to a center where everybody is there for the same reason creates solidarity.  For others, it can be depressing.  I preferred to go somewhere (like Beth Israel) where people were at the hospital for all sorts of reasons.  It's up to you.  Also, if you're surgeon is pressuring you to do something, seek out another surgeon.  I was pressured to get a double mastectomy and it wasn't until I broke down in my oncologist's office that she said I didn't have to get the double right away. 
5. Your kids aren't going to care that you have cancer.  This is a blessing and a curse, especially if your kids are little, like mine are.  There are going to be days that you don't want to get out of bed, but if you have kids, you have to get out of bed. If anything, your kids will get you through this too because they will be the reason that you go through this fight.
6. Get a wig with real hair if possible.  I never got used to my wig.  It was itchy and uncomfortable.  People swore they couldn't tell it wasn't my real hair, but I could tell.  Since I didn't like it, I wore scarves.  Nothing says "I AM GOING THROUGH CANCER TREATMENT" like a scarf.  I met somebody going through treatment who had a wig made out of real hair and it looked amazing.  They're expensive, but if you're worried about losing your hair, I think they're worth it.  God forbid, if I have to do this again, I'll get one of those.
7. Feel free to pull the C card.  You're going to be tired and feel like crap.  If you get invited to something and you don't want to do it, this is probably the one time in your life that you can pull the Cancer card and decline activities that you just don't have the energy to do.
8. I found the end of treatment to be rather anticlimatic.  People got me presents for finishing up chemo (people buy you a lot of presents for all sorts of random things), but I still had to go through radiation.  Radiation is a cakewalk compared to chemo, but it's still part of treatment.  All of a sudden treatment is over and you're expected to get back to regular life.  That was kind of weird.
9. People (still) say insensitive things.  And people tell you very personal things.  Tell the former to f*** off (or just say it in your head).  It depends on the person and how you're feeling on any particular day.  I don't think most people mean to offend, but people will try to relate to you in all sorts of ways.  Here's the thing--everybody's dealing with something.  You know that, I know that.  For every insensitive person, there were people who shared very personal and touching stories about their own personal struggles that had nothing to do with cancer.  That part was very touching.
10. Some people are experts on what causes cancer.  If I read one more FB post about a "scientific" study about how fat, sugar, dairy, or meat causes cancer, I will scream.  I find the people that are self-proclaimed experts on what causes cancer have no idea what they're talking about.  I have come very close to telling these people off, but I have yet to do so (shockingly).  It's probably only a matter of time.  I often find the people with these opinions have never gone through cancer treatment.

That's what comes to mind initially.  If you're reading this and recently diagnosed, I hope it helps.  For those friends who have also gone through this, would you add anything?

Radiation is boring and fears put to rest (for now)

Eight treatments down, 25 to go.  Radiation is boring and a grind.  After three more treatments, I'll be a third of the way through.  It's not "hard" per se, but it's not easy either.  At least I'm not having any side effects yet.  I'm getting along better with most of the staff, although one or two still call me Rachelle. But each day I get to mark off one more treatment.

I mentioned a few weeks ago that I was having pelvic pain.  I ended up seeing a gynecological oncologist (say that five times, fast or slow) and she examined me and was sure I was fine.  That said, she sent me for an ultrasound, more for my piece of mind than hers (I think).  The good news is while she wanted the ultrasound soon, she wasn't in a rush to schedule an emergency ultrasound, which I took as a good sign.  I finally had the ultrasound on Halloween.  I don't know why, but it didn't register until I got there that not only was I in the same building, but I was in the exact same room as when I had my biopsy in April.  In fact, it had been almost exactly seven months since I'd been there. 

Even though the oncologist was confident my pelvic pain was not a result of ovarian cancer, it was still stressful getting the ultrasound.  The technician's face was hard to read and of course you can never tell what anything is on those ultrasound screens.  Also, prior to April 1 of this year, I had associated ultrasounds with being pregnant with my two beautiful daughters.  Now it represented cancer.  And of course, being in the same room brought back how naive I still was to this whole thing.  I remember being a little concerned but I was too young and healthy to get cancer.

At one point, the technician was listening for something during the ultrasound.  I'm not sure what, and I didn't ask, because I wasn't sure I wanted to know the answer--was she listening for the presence or absence of something, and was I passing the test in a good way?  Whatever she was listening for, to me it sounded like the wind howling through a frozen tundra.  All I could picture was this barren place with the wind blowing snow and ice around.  A bizarre image, I know.  I was used to hearing my babies' heartbeats when they turned on the volume during an ultrasound.  So that made me a little sad, because I'm never going to hear that sound again for myself.

While I don't have the final answer, all signs point to no ovarian cancer.  I feel like I should be more relieved than I am.  I think I'm mostly too tired to feel that relieved.  Even this post feels more down and negative than it's intended.  It's intended to be reflective rather than sad or scary, but I'm not sure I'm coming across that way.

I'm starting to realize I'm going to need a serious break when this is all done.  I don't care if California won't be that warm--we might have to have our make-up vacation to California sooner rather than later.  Or maybe someplace warm and tropical!

Rachele goes to the Radiologist

Radiation started today.  Even though today was only my first visit, I’m pretty sure that I already have notes in my file about being a “difficult” patient.  Here are some examples of my interactions thus far (I apologize in advance if the formatting seems off.  It's sort of driving me crazy):

1. I had my initial consult with my radiation oncologist in August.  This is essentially a meet and greet to get a sense of what radiation is like and to meet my radiation oncologist.  This meeting was uneventful.  I provided my PCP’s name, not once, but at least twice in this initial meeting to a few people (this is important for later on).
2. Before radiation starts, you go in for your mapping.  The radiation team figures out where they’re going to point the radiation lasers and you get tattoos so they know where to point what I like to call the "radiation lasers".  This happened between my third and fourth chemo treatment back in September. When I checked in, I had the following conversation with the woman at the front desk:
• WAFD:  “We have a note here that we need the name of your PCP.”  
• Me:  “You’re kidding me, right?  I’ve given this to you at least twice already.”
• WAFD: “Yeah, sorry.”

Needless to say, this filled me with confidence about the practice.  
    3.  After the mapping, I was told they’d be in touch about the number of treatments I needed and when my daily slot would be.  Super.  I finished up chemo, and before I knew it, I was a week away from starting radiation.  Except that I’d never heard from the Radiation office.  So I called to see what the deal was. Here's how that conversation went with one of the nurses:

• Me: "Hi, I had my mapping a few weeks ago, and I start radiation next week, and I was checking in to see how many treatments I'm going to be getting and when my regular time slot is going to be."
• Nurse: "Oh, we go over all of that at your initial radiation visit.  The schedule and availability changes as people finish up radiation."
• Me: "Perhaps I misunderstood, but that's not what I thought you told me at my mapping appointment.  Waiting isn't going to work for me.  I'm trying to plan my life here, so I'm going to need that information now."  

I got my slot.  I realize that things happen and people might have to extend a few sessions because they previously missed sessions, but the last time I checked, that's what a calendar is for.

4.   After today's radiation treatment, I met with a nurse.  She called me Rachelle.  I corrected her on the pronunciation of my name.  This is how that conversation went:

• Nurse: "Oh...it really looks like Rachelle." 
• Me: "Yeah, well it's not.  Sometimes people get confused because of the single l."
• Nurse: "I think it was the e at the end that threw me off.  Do other people call you Rachelle?"
• Me: "No, because it's not my name."

And scene.

One down, 32 to go.  I can tell they like me.  It can only deteriorate from here.  At least the actual radiation oncologist is nice enough.  She hasn't acted like this doctor yet (thanks for the clip, Erin!):