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!

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:

 

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.