Three years ago today....Happy Breastivus to me!

Three years ago today I was diagnosed with breast cancer.  I wasn't sure I was going to write about this but my friend Noel wrote a post acknowledging her Breastivus so I figured, "what the hell."  Breastivus is like Festivus--there are feats of strength and airing of grievances.

So where to begin?  Many women post-treatment go on tamoxifen (if their cancer was estrogen positive).  Since I had my ovaries removed and I'm now post-menopausal, I'm on an aromatase inhibitor, which blocks the production of estrogen in my body.  One of the side effects of this is I feel like I'm about 80 years old at any particular time.  It takes a while to wake up the joints.  It also strips away your bone density so I've gone from normal bone density to osteopenia.  I now pop calcium supplements like they're candy (seriously, it's candy.  They're gummies and I'm not 100% positive there's any calcium in them).  I already work out five days a week, I can't imagine what the bone density loss would be for somebody that isn't doing weight bearing exercises regularly.  It also turns out that I can no longer buy life insurance--I am "uninsureable".

Also, there isn't much comfort in being "cancer free".  The cancer can come back at any time.  And if it does come back, it's not going to be good.  I, like many of my fellow sisters that have also gone through this, manage this as best as I can.  But you have scares.  A lingering cough, fatigue and back pain are three symptoms in particular I get asked about by my medical and radiation oncologists.   I work full-time and have two little kids--I'M ALWAYS TIRED.  At my last check-in with my radiation oncologist, I mentioned that I had had ongoing lower back pain.  She encouraged me to mention this to my medical oncologist.  I'm 99.9% sure this is musculoskeletal, but there's that .1% doubt that lingers and wonders, "what if it isn't"?  Especially if Dr. Van Buren wants me to tell Dr. Tung.  In addition to the ongoing back pain, I had a cold a month ago that had a lingering cough. One night I had a coughing fit as I was trying to fall asleep.  That, combined with my back pain, led to this thought, "Holy crap, this is it.  It's back.  I was hoping the girls would be older if and when it came back.  I thought I'd have more time.  Belle and Addie will be those girls--when people are near the girls at a birthday party and a parent doesn't know our story, the parents who do know will say "their mom died of breast cancer" sotto voce.  They'll HAVE to setup a GoFundMe page for Aaron and the girls since I'm uninsureable. And I'm thisclose to paying off the rest of my grad school student loans."
Thankfully, one reason I love my oncologist is she has a good balance of acknowledging my concerns and talking me off the ledge.  Although she did ask, "is the back pain constant or does it come and go?"  What's the answer that's going to have her tell me to come in.  "Um, it constantly comes and goes?"  The cough has gone away, the back pain hasn't. But she's left the door open if I want to get that scanned to give me peace of mind.  Also, I swear that chemo brain fog hasn't gone away.  I can't remember anything. It gets worse when I'm tired.  I hope I play this off as "endearing absentmindedness".

Don't get me wrong, life is good.  I like to think that I don't get worked up about small things anymore but it's also nice to have the luxury of getting worked up about small things if I want to.  My girls (my real daughters, not the lumps that are intended to represent my post-cancer boobs) drive me bonkers (it's taking me a really long time to write this because they keep bothering me.  Sheesh).  I'm seriously considering getting a tattoo on the lumps because I don't know what else to do with them.   I don't savor every day--I live in reality (see previous reference to working full time.  This article also summarizes my thoughts on this).  I worry about the Presidential Election and what's really going to happen if Trump actually wins. I hoped on Friday that his whole campaign was going to be revealed as an April Fool's joke but no luck.   I also worry that worrying about the cancer coming back is going to increase my chances of the cancer coming back.

So.  There you go.  I didn't mean to come off so negative and dark (but it IS Breastivus).  Also, I'm not sure this is the most cohesive and well-written post I've ever written.  I'm grumpy about the life insurance thing. This is always sort of a day of reflection for me more than anything else.  Happy Breastivus!

April 3, 2015--two years later

Here we are, two years later.  Wow, in some ways it feels like yesterday, in other ways it feels like it was more than two years ago.  Honestly I was too busy at work to really think about the significance of the day.  I'm not really sure how to acknowledge this day.  On one hand, it's a day that changed my life forever.  But it's not a day that I want to define me.  I think at this point it's going to be a day that I quietly reflect on, like any day that has significance, like the death of somebody special to me.  I suppose it's a good way to center myself and see if I'm truly happy with different areas of my life.  My bullshit level is still pretty low, so if something is a waste of my time, I'm pretty good at disengaging.  But this is still a good time to take a step back and assess.

I just re-read what I wrote a year ago and it reminded me of something--I recently changed jobs and it's kind of nice to start with a clean slate.  Nobody there knows I had cancer (unless they stumbled upon my blog in some pre-hiring Google search on me).  It's empowering to know that I don't have to say anything if I don't want to.

The other thing that's kind of odd is when I started treatment, Addie was only 14 months old (in hindsight I can't even believe she was that little). I knew more of the parents of Belle's friends' parents than Addie's, and as I've talked about many times before, the girls' school was beyond amazing and supportive, as were many of the other parents of Belle's friends.  But now that Addie's three(!), she's at the age of play dates and birthday parties, and I've met a lot of her friends' parents and I really like them.  I'm sure I encountered these same parents at daycare drop off and pick-up during treatment, but I don't really remember doing so while I was wearing my scarves.  But I'm not sure they know or remember, because they were probably just as exhausted as me because we all had babies to deal with as well as whatever other things life was throwing everybody's way at the time.  And any of them who I'm now connected to on FB could see this post, but it's kind of a weird thing to share or bring up.  So....if you're a parent of one of Addie's friends...hi...?  Whatever, it's just kind of odd.  Bring it up to me, don't bring it up to me, it doesn't matter.

Anyway, I'm starting something that I'm really excited about--I'm going to be a mentor to another woman currently going through treatment.  This was a program that I tried to get involved in back in January, but for multiple reasons it just didn't work out.  They're starting another session in a few weeks and I'm really excited.  Ever since treatment ended I've wanted to volunteer for something like this.  I'll let you know how it goes!

"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.