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.

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?

Finally, a trip to California

You might remember (or not, I swore I wrote a post about this but maybe I never did), but right before I got my diagnosis I'd booked a family trip to visit my parents in California.  It was also my 20th High School reunion.  That was painful to write.  Anyway, we postponed the trip because I was going to be right in the middle of my chemo treatments.  We finally got our re-do.

We left on Wednesday, April 30 and flew on Virgin Airlines.  I'm not a fan of the airport but Virgin made it as pleasant as possible.  The flight was an eventful as it can be with a 4- and a 2-year old trapped in a flying box for 6 hours.  Overall, it could have been worse, but we were "that family" a few times.  The upside is the flight attendants soothed us with free alcohol so that helped.  A lot. Plus I was able to watch TV off and on--I got my Bravo reality show fix and it was delightful.

Overall, the week was great and went by too fast--the girls got a ton of time with my parents, I got to visit old haunts and see old friends.  Aaron and I even got to escape to wine country for a few days.

The visit didn't start off hitch-free.  We stayed in a hotel so we could have a place to decompress at the end of the day.  When we checked in, they told me they didn't have a room with double beds because there had been some "incidents" and not all of the double bed rooms were available.  I was soooo tempted to ask what they meant by "incidents", but I figured ignorance was bliss in this case.  So I pleasantly (because I am nothing if not pleasant...ha! that's a joke, I wasn't very pleasant) asked them how they were going to solve this problem, because this was a problem.  They offered me a room with a King-size bed.  Um, one bed for 2 adults and 2 kids?  That's not going to work.  They could offer me a free room in addition to the room with the King bed.  Are the rooms adjoining?  No?  Well that doesn't help us either.  But I took the free room (which we never stepped foot in) and we all cozied up in the King size bed.  I was next to Belle, so that was a little better for Aaron, who was next to Addie and who is a kicker, flailer and head-butter.

The girls woke up at 5:30 the next morning.  I got them and me ready as quickly as possible.  While I was in the shower, Addie started crying.  What now?  Oh...she'd taken off her diaper and pooped.  On the floor.  Now we were that family again. We hosed Addie off, cleaned off the poop and I took them out to breakfast so Aaron could get a little sleep.  We left a path of destruction at breakfast and killed time until Target finally opened.  Addie pooped again (why does this child poop so much?) so we went to a Safeway to buy diapers (because of course had I brought any with me on our morning adventure?  Of course not).  Throughout the Safeway visit I'm trying to control my wild children.  You might not realize this, but I am attempting to raise children that are well-behaved (at least in public).  The cashier told me to relax.  If I wasn't so desperate for diapers and if I'd known where another store was, I hesitate to think about what I would have said or done to that cashier.  Instead I gritted my teeth, paid and left.

So, Target.  My mom had sworn up and down that we didn't need to bring any clothes for the girls--she had it covered.  Great!  Except for the fact that when we got there it was in the 90s and she had flannel PJs for the girls.  And all of the daytime outfits were pants and long-sleeves.  Not a skirt or dress or a pair of shorts to be seen. Oh well, eventually it would warm up in New England (right?), so we could use it then.

The girls ended up staying with my folks every night after that first night.  I was a little worried about the girls wearing out their welcome before Aaron and I headed out to Wine Country, but my folks and the girls all had a blast.  We saw old friends, spent time with my folks and saw a ton of other people that I hadn't seen in ages.  On Sunday and Monday Aaron and I escaped to Wine Country.  It was really nice to get away.  Sadly, one of our cats died while we were gone.  But that's a whole other story entirely...

April 3, 2014: A year later

One year ago I got my diagnosis.  I've spent a lot of time wondering how I was going to feel when this day came.  Earlier this week I felt some of that anxiety from last year came back.  But all week I've kept forgetting what Thursday represents, which I think is a good thing.  I might think about it here and there tomorrow, but I don't anticipate that it's going to consume my day.  I got the call from my doctor just after seven, and I have a work thing tomorrow night, so I imagine that will be a good distraction for the actual anniversary of "the moment".  All in all, I thought I was going to be more reflective.  But I'm not that interested in reflection.

Ever since treatment's been over, I've just wanted to look forward.  I love that there are people I've met in the last few months that have no idea what I went through--they just think I have short hair.  More than anything, I'm thankful for the new friends that I gained as a result of last year.  A lot of people came in my life last year and I'll always be thankful for that.  We couldn't have gone through the last year with all of the amazing support that we received.  Many of those people have faded back to their lives and I'm not in contact with all of them, but I'm lucky enough to count some of them as better friends who are in my life a lot more.

This is my 48th entry.  I had a busy few weeks of prep sessions with the plastic surgeon, follow-ups with various other docs and an MRI (which was clear).  I have a mammogram coming up and a check in with my oncologist in May, but other than that, I'm mainly looking forward to our vacation to California at the end of the month!  In the interest of blatant self-promotion, don't forget my new blog!

A visit with the plastic surgeon

Every once in a while I think, “Maybe I shouldn’t share so much.”  Especially when I’m moping about things post-surgery.  Because when I read some of posts after the fact, I sound pretty pathetic.  But you need to understand—I don’t like taking breaks.  I find getting things done and being active relaxing.  So being forced to sit and do nothing is very frustrating.  I’m told that not everybody is like this.  Now imagine having to live with somebody such as myself and you can imagine some of the challenges that Aaron faces as my husband.

Earlier this week I had a trip to the plastic surgeon.  As you know from past posts, this is always a fun experience for me (please note my sarcasm).  As somebody that likes to connect with people, I get frustrated when I don’t.  I’m pretty sure this guy doesn’t smile.  Ever.  I have to remind myself that I don’t have to like him.  He does amazing work, that’s the point.  I don’t dislike him as much as I did when I first met him, but I still dislike him.  To make matters worse, this visit was…awkward.  He took pictures, which was uncomfortable.  He did that at my initial visit, but he wanted updates.  Everyone's staring at you, you feel violated.  I couldn’t get out of there fast enough.  Needless to say, I more than earned a glass of wine that night.

A prize for my visit to the plastic surgeon

 

The surgery is tentatively on for August 18.  I'm just waiting to get the confirmation from the surgeons.  They will move fat and tissue from my belly and these will be my new boobs.  Some people have asked if I have enough fat for this.  It's very sweet of you to say so, but the answer is yes.  The plastic surgeon got a good feel of my fat yesterday too.  To his credit, he did say they’d be small.  A little tummy tuck and a lift?  Sweet.

This recovery will be the most difficult one out of all the previous surgeries.  It’s four to five days in the hospital.  I really hope I have a better roommate this time around.  Similar to last time, I won’t be picking anything up for two weeks.  He said to expect to lay low for about four weeks.  I keep telling myself I’ll be better this time around, but who am I kidding?  It will be so weird to be in the hospital for that long.  If I’m lucky I’ll be home earlier.  Although since I’m probably a low readmit risk, I’m a good opportunity for the hospital to make money.  The last sentence is a joke for those of us in healthcare.

Eventually I’m going to run out of things to talk about that are cancer-related.  Really the only thing left is my reconstruction at this point (hopefully).  I imagine I’ll do a post when I hit my anniversary too. Which is a good segue to a post I wrote a few weeks ago about my new blog—book reviews.  Let me know what you think!

Moving on

Okay, enough with self-pity and guilt.  Thanks for all of the support the last few days.  Today's a new and better day.  I have President's Day off for work, so it's an another day to relax.  I went for a little walk, hopefully I'll be able to catch up with an old friend later today, and we'll see where the rest of the day takes me.  We'll take the girls to my in-laws tonight and the girls will have a blast there for the next two days.  I'm ready to go back to work tomorrow.  It's time to move on with my life.