"What ifs" and other thoughts

I’ve been planning on writing an update for a while but life keeps getting in the way.  Funny how that happens.  I had initially planned on just writing about the passing of Laurie Becklund.  I had seen a post for an Op-Ed that she wrote about a month ago.  Then I heard about the death of Lisa Bonchek Adams and the firestorm that she had created while blogging about her metastatic cancer.  And then this article appeared in the NY Times earlier this week.  All of these articles flowed together for me so this is a bit of commentary on all three of these women.  I touched on similar themes in my last post, but Laurie and Suleika both expanded on these thoughts more elegantly and eloquently than me.   

Should this disease ever come back, I will refer you all to Lisa's article.  As an aside, I'm sure some people will be in disbelief that her doctor told her over the phone that the cancer had come back.  I also initially got my diagnosis over the phone as well.  Let me tell you, there is no good way to give this information.  I just wanted to know and I wouldn't have gotten any more sleep if my doctor had called me that Wednesday night almost two years ago and said, "I have your results and I'd like you to come in tomorrow to discuss them."  That's not good, so just tell me. I would like to think my oncologist would give me similar respect should my cancer metastasize one day. 

There, I said it.  I don't talk about it a lot but it's there in my head.  It doesn't necessarily take up a lot of room, but it's still there.  A new ache, a cough that lingers, the mind can't help but go to that place.  Even though I've done everything in my power to get rid of body parts so a new cancer doesn't develop, it's not a new cancer that's scary--it's the metastasizing that's scary.  Women like Lisa and Laurie's experiences personalize that scare.  If it can happen to these women, why won't it happen to me?

Lisa chose to document her treatment in her blog.  Two reporters didn't like this.  Should that day come will I do the same thing?  I don't know.  I wouldn't be surprised if I did.  As many of you know, I'm opinionated and don't have much of a filter.  When I was in treatment, I received a lot of positive feedback on my blog.  I don't know if I made people uncomfortable.  Those people were wise enough to not say anything to me.  They may have knew me well enough to guess what my reaction would have been if they'd told me that.  If you don't like something--don't read it.  If it makes you uncomfortable, that's on you, not me.  

It's Lisa's experience and other women whose cancer has comeback that made Suleika's article resonate so much.  Whether you had the whole she-bang like me, or "just" had a mastectomy with no chemo or radiation or "just" a lumpectomy with radiation, there is a lot of support (if you're lucky) while during treatment, but very little support once active treatment is over.  Technically, none of us are done with treatment because every single woman I know who's been diagnosed is on Tamoxifen or an aromatase inhibitior, depending on whether they're pre- or post-menopausal.  But it's hard to feel in treatment with a pill.  I digress.

I strongly encourage you to read these articles because they're so well-written.  This felt more like stream-of-consciousness than a thoughtful, well-written article but thanks for reading anyway!

One year, nine months and three days later...

Wow, it's been a year since I finished treatment.  That flew by.  There have been a few more surgeries since then--I'm now ovary-less and post-menopausal and of course I have my new boobs, courtesy of my stomach fat.  I still miss my ovaries, my stomach fat not so much.

It was nice to re-read my post from this time last year. I initially almost missed this anniversary--for some reason I thought it was December 2.  I take that as a good sign, although I'm pretty sure it's still going to be awhile before I forget the anniversary of my diagnosis. So many anniversaries, so little time.

I still lurk on a breast cancer listserv that I joined during treatment.  There have been two recent articles/discussions that have been of interest to me lately and seemed appropriate for this post on the first post-treatment year.  One was on self-blame and cancer and the other was the pressure to move on after treatment.

Self-blame and cancer
Perhaps because of my BRCA2 status, I've never done a lot of reflection on what I could have done differently to prevent my cancer diagnosis.  It just didn't seem like a worthwhile activity because I don't have a time travel machine to go back in time anyway (if you have a time travel machine and would like to share, please let me know).  The only thing I probably could have done differently was have a preventive mastectomy.  But I probably would have only done that if I had said time machine. The thing that I worry about the most is that my worrying about my cancer coming back will become a self-fulfilling prophecy, so I try to avoid that, but that can be easier said than done.

Post-treatment support
If anything, the things that I still struggle with the most are the things that were taken away from me as a result of my BRCA2 status and diagnosis.  Even if I hadn't had my ovaries removed, I wouldn't be allowed to carry any of my own children because I'd be on Tamoxifen.  Yes, I'm very blessed with my two little girls and they are more than a handful, and I'm not even sure we would have actually had more children, but the point is the choice was taken away from me.  The removal of my ovaries made me post-menopausal in an instant.  This has its own joys.

The end of treatment was anti-climatic.  I got a nice little goodie bag from the radiation office and sort of got pushed back into "regular life".  Part of me welcomed this transition back to "regular life" with open arms.  But I also remember thinking "now what?"

There is definitely a lack of resources for post-cancer treatment (at least in breast cancer). Or these resources aren't directed at people that work during the day as they seem to happen in the middle of the day.  And I live in a part of the country where I had the luxury of choosing from a handful of great places for treatment.  I can't imagine what it's like for people who live in areas with limited treatment options, let alone post-treatment resources.  I can understand why many women stay on listservs such as the one I've stayed connected to just to be part of a group that understands all of the above.  Which isn't to say that I couldn't talk to any friends about this, but I think a lot of people don't know what to say.  Which is perfectly fine, because I wouldn't know what to say either.

Other things
I get a lot more upset now when I hear of people dying from this horrible disease.  When Diem Brown passed away, it hung over me for a few weeks. (I'll save my rant on the language around "losing her battle".  I HATE that saying.)  I also get sad and frustrated when I hear about a friend's friend/family member dying.

I miss the people that I connected with during treatment.  I see many of these people still but not all of them.  What I do like is still seeing these people and not having the whole cancer thing hang over the conversation.  There are people I've met since treatment that have no idea I had cancer until I tell them (or maybe they do but I don't know they know).  It's a nice feeling to not be that person anymore.  

I'm not sure this post makes a lot of sense.  It's taking more concentration than I have right now.  The aforementioned children are alternating between having fun, complaining about being hungry and making a mess so they keep taking away my focus (how DARE they!).

So let's raise a glass to...whatever.  When I was looking for a picture of a glass of champagne, I found this little gem:

 

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.

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.

Thoughts on a recent article about being a warrior

One reason I don't post to this blog as often now is I'm not sure if people are still interested in hearing my thoughts on these topics now that I'm "cancer free".  I guess if you're not interested you won't read it.  Anyway, let me know if you like these posts.  This entry is my thoughts around a recent article that appeared in New York Magazine.  I encourage you to read the article for yourself too. 


Good Morning America anchor Amy Robarch spoke at an event for Gilda's Club, an organization to support those living with cancer.  The wife of the author that wrote the article died from breast cancer a few years ago.  Needless to say, he wasn't impressed by Robarch's speech. I agree with many of the author's points, but while I didn't see her speech, I'm inclined to give Robarch the benefit of the doubt--maybe she was trying to be inspirational or hopeful.  Who knows.  If the audience was comprised of those living with cancer, maybe she misunderstood and should have had a better understanding of her audience.  As the author points out, most women don't need to get a double mastectomy.  However, if Robarch did that because she felt it would give her peace of mind, then that's her right.

One of Robarch's main themes was she "kicked cancer's butt".  There are many images associated with cancer--fighting it, beating it, kicking its ass.  (As an aside, I wrote a paper about this while in grad school at Tufts.  If I had any idea where that paper was, I'd love to read it now.)  Heck, even the title of this blog is centered around the same idea--cancer can't catch me.  When I went through treatment, those nine months were solely focused on just getting through it.  I didn't feel inspired or empowered.  I didn't feel like I was fighting it, beating it or kicking its ass.  I was terrified and trying to deal with the diagnosis and how my life had instantly changed.  The chemo days were the darkest.  There were many days that I didn't know if I could get through it.  I would cry at how shitty I felt and how the whole thing felt like it would never end.  Chemo SUCKED.  (Am I drama queen?  Perhaps.)

What I took out of the experience is while sometimes I still feel very vulnerable, I do feel tougher than I did before.  I was pretty tough before, but now I feel really tough.  Not because I beat cancer, but because I survived the last year and I'm still standing.  Maybe to some that means I kicked cancer's butt but it doesn't really resonate with me that way.

While I might be tougher, I still get scared.  I just saw on Facebook that a friend of a friend just passed away from breast cancer.  She was pregnant when she was diagnosed back in 2010 and the cancer came back.  Like me, she has two little kids.  She has an amazing spirit and some of her posts were so similar to mine it was eerie.  To say this is feeding into my deepest fears is a huge understatement.  I perused her blog but I had to stop because it was making me sad and scaring me.  But it's been haunting me all day.

The truth is that while many of us "beat cancer", it doesn't mean that those that didn't survive weren't strong enough to do it.  I didn't "beat" cancer because I was fought harder than somebody else or because I wanted it more.  I beat cancer because it was caught relatively early and my cancer responded to treatment.  Being in good physical shape probably helped my recovery, but who knows. I bet the majority of us know people who have died from cancer--while maybe some of them weren't in the best of health because of other conditions, none of them were "losers".  Everyone that I've known died from cancer was a fighter.  If my cancer metastasizes some day, does that mean I didn't fight hard enough? Methinks no.

Stuart Scott is an ESPN analyst.  I wasn't aware that he'd been battling (there's that word again, it's hard to escape it) abdominal cancer for the last several years until I heard about his speech at this year's ESPYs.  One of his quotes was, "When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live." I love this quote.  Cancer will kill many of our family and friends and we will hate it for that, but our loved ones are not, and never will be losers.

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.