Tuesday, September 30, 2014

It's okay to say these things to somebody that has cancer

This article came out a few months ago.  I didn't comment it at the time but it's always sort of been in the back of my mind.  I had some people say some strange things to me during my treatment.  I'm usually pretty candid, but in this case I'm going to maintain their anonymity.  Fortunately these people are in the minority.  As I've stated many times before, most people were awesome.  If anything, I was more hurt by the people that didn't say anything at all than the occasional person that said something thoughtless.

It's because of the people that didn't say anything at all that I found this article a little problematic. I'd say I agree with less than half of these. People want to help, they want to say the right thing.  Sometimes they don't know what to say or do.  These articles don't help.  Let's take this article with a grain of salt: no offense to Yahoo! but it's Yahoo!, it's not the New York Times.  Here's my response, item by item:


  1. You are strong and will get through this.  When people used to tell me this, I felt lonely because I knew this was my fight and while I had a lot of support, it was ultimately something I had to go through alone.  Again, people don't know what to say.  As I've stated in a previous post, some of us "fight" cancer successfully, some of us don't.  This isn't a reflection on how strong we are.  
  2. How are you feeling? Again, I'm not sure why this is something you shouldn't say.  If somebody asked me this, sometimes I'd be honest and say I felt like crap.  I assumed people asked because they genuinely care.  Is it something that people asked me a lot?  Yes.  Was it sometimes a reminder that I felt like crap?  Yes.  Would I want people to not ask?  No, I'd rather they ask.
  3. Can I do anything to help?  This post is becoming a review of past posts.  In this post I discussed things people could do to help.  Yes it's vague but at least people are asking.  As the patient, it's within your power to offer something concrete or say no.  If they're not sincere in their offer, you'll find out soon enough.
  4. How serious is the cancer?  Is this an insensitive question?  I guess it could be perceived that way.  I have a theory that people want to know that you're going to be okay, especially if you're in a similar demographic to them (e.g., "young" (for cancer at least), little kids, etc).  If anything I'd think that people would talk about this behind your back, not ask you straight out. According to this article, you're also not supposed to ask what the treatment plan is.  I was never bothered about people asking me what my treatment plan is.  I ask current patients what their treatment plan is.  As frequent readers of this blog know, I put just about everything out there, so maybe I am unique in this.  
  5. My grandmother/mom/sister/friend had cancer...Everybody knows somebody that's had cancer.  Fortunately most people told me stories (or connected me to) about people that were alive and well.
  6. I read an article in the newspaper that said you should...This is probably the one I feel the strongest about.  I now get really, really riled up when people post (mostly unscientific) articles that say that fat, eating meat, dairy, etc. causes cancer.  These are often uncited articles with no scientific basis.  If you can't cite a study to accommodate this claim, please don't share this. If you share it on FB, block me. For every scientific study you show me that says that sitting on your head causes cancer, I can show you a study that says it doesn't.  So stop this.  Researchers don't know what causes cancer in a lot of cases--that's probably one reason why they haven't figured out how to stop it.
  7. Your hair looks good like that.  This one did (and still does) drive me crazy a little bit.  And no, I'm not keeping it this short.  I'm going to keep growing it.  And no it wasn't as curly before.  But again, people are making conversation and trying to give you a compliment (assume it's a compliment).
  8. God doesn't give you more than you can handle.  I'm not sure if he does or doesn't.  A lot of people prayed for me.  This was really really nice of them, but I preferred to focus on science than prayer.  No offense. 
  9. I know how you feel.  I did have somebody that kept comparing her knee surgery to my treatment.  That was a little odd.  She was also most vocal about item #7 too.
  10. You must have done something to get it.  Fortunately nobody said this to me, although I knew people that experienced this.  This isn't cool.

Read the article for yourself.  If you've committed any of these, don't be so hard on yourself (unless it was items 6 or 10).  I think it's better to say something than say nothing at all.

Tuesday, September 23, 2014

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.