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.

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.   

Frustrated

Yesterday was a boring day of more bed rest.  I got up this morning ready to spend the morning with the girls.  Two and a half hours later, I'm back in bed, not feeling great.  The surgeon wasn't kidding about the importance of not picking up anything more than eight pounds.  This is extremely frustrating.  I know it's irrational, but I feel like a failure. 

Of course, Aaron is going on his first work trip in two years on Tuesday.  This didn't feel daunting until after this morning.  I was planning on asking for help.  Since I can't pick up the girls, I was going to need somebody to help get ready in the morning and somebody to come over at night.  This is mainly for Addie--Belle can get in and out her bed, car seat, etc. fine.  But Addie's still in her crib and can't climb into her car seat.  But at this point they're just going to go to my in-laws while Aaron's gone.  This bums me out a lot but I know it would be extremely difficult to work all day and take care of the girls.  I'll miss them all like crazy but at least I'll get some time to myself.

I hate admitting that I'm mortal and need help.

Post-surgery update

Hi all,

It's me, post-menopausal Rachele.  Not feeling too bad two days post-surgery.  Much better than I was feeling on Tuesday.  Tuesday had more of "I feel like I'd been beaten up" feel to it. Today it's more of a "I did a really hard ab workout".

I definitely didn't prepare myself for how long this was going to put me out of commission.  No strenous exercise for at least two weeks.  Maybe I can start jogging in two weeks, but no heavy lifting (more than 10 pounds) for more like a month.  A month????  I can't pick up my girls for a month?  If I do, I risk a hernia, which I definitely don't want.  So fine, I'll rest.  Belle stayed home from school on Wednesday because she wasn't feeling great and because of the snow, both girls will be home this afternoon.  So no rest for the weary. 

Another idea for a new blog

You might remember my post about what I was going to blog about when this whole thing was over.  I have to admit, a few weeks ago I actually started a new blog and wrote a post about my conspiracy theory about Ke$ha. You can read it for yourself, but it didn't feel right.  Part of me felt guilty because I was reminded of the conspiracy theory when she went to treatment for an eating disorder.

Anyway, I had a new idea--book reviews.  I don't have the faintest idea if people would be interested in my book reviews but I figured I'd try anyway.  I sort of feel like I need some sort of shtick (for lack of a better word).  Anyway, let me know what you think. 

Adios ovaries

I didn't realize it had been over a month since my last post.  We celebrated Belle and Aaron's birthdays, work's been busy and life's been busy.  I even got my first haircut since I lost my hair!  And as I'm trying to write this on a Saturday morning, I'm reminded that it's very difficult to write a blog post with a 4- and an almost 2-year old bombarding you with questions and requests.  So if parts of this post don't make sense, as usual, I'll blame my children.

This Tuesday I'm getting my ovaries removed.  Because of my BRCA2 status, this is a preventive measure.  Despite my earlier scare, there's nothing wrong.  A few people have asked me how I feel about this.  I can't say I've been spending a lot of time reflecting on it.  The decision to have more children (or not) was really taken away from us back in April when we met with the fertility doctor the day after I got my diagnosis.  (Note: I thought I'd written about this in a past post but I couldn't find it.  So I'll write about it now.  Or again.)  Anyway, we'd spent an exhausting day in Boston meeting with my surgeon and my oncologist and then getting a second opinion at Dana Farber.  Then we had a last minute appointment with a fertility doctor.

We were so worn out by the time we got to the fertility doctor.  The fertility doc started running through our options and after a few minutes I tuned him out.  It was so overwhelming in terms of the process of harvesting the eggs, the price to store the eggs and the low chances that the eggs would even be "fresh enough" (my words, not his) to fertilize given how old my eggs were (his words, not mine).  Did I want to have more kids?  Call me crazy but yeah, I sort of did.  I was exhausted with the two that I had, but I loved the idea of more.  I hated pregnancy but I loved being a mom.  So for me it was worth it for me to suck up another few years of exhaustion.  Of course, there was the minor issue of whether we could actually afford another child.  My point is I wasn't sure it was going to happen, but it was nice to have the option.

Anyway, I tuned him out because it was too much.  I was still reeling from my diagnosis and I just couldn't process what he was telling us.  I didn't want kids enough to go through everything that he was describing, especially if the chances of successfully getting pregnant weren't that great.  And then when we got home my new oncologist called me in a panic and said that there was no way she was going to let me off Tamoxifen to have another baby.


If in a few years we want more kids, we could adopt.  That being said, I've heard that the adoption process can be stressful and I'm a little worn out on stressful processes right now.  Another disadvantage is I don't think adopting is cheap. Sometimes I get crazy ideas that maybe we could be foster parents one day. The latter usually happens when I see the Heart Gallery at Jordan's Furniture.

So there you go.  A long answer to the question of how I feel about my surgery.  I'm not psyched to be post-menopausal before 40, but it's worth it for the peace of mind that I won't develop ovarian cancer.  I'm sad that the option for more children was taken away from me, but oh well.  I have two healthy little girls that wear me out every day and I'm thankful for them. 

The drug post

Several months past I promised a philosophical discussion on all of the drugs I've been accumulating.  Well I don't know how philosophical this post is going to be, but for those that have been waiting, it's finally here.

The first chemo type I had made me really nauseous.  I was given anti-nausea drugs to help with the nausea, but they never really worked.  At least not to the degree I wanted them to.  If they're labeled "anti-nausea", that to me suggests they will get rid of the nausea.  They didn't.  Even speaking to my oncologist and chemo nurse, the intent seemed to be for me not to throw up.  The nausea was just something I had to ride out.

When I first got diagnosed, one of the first things my dad said to me was to get marijuana for the chemo side effects.  I had an aunt whose husband had cancer and he swore up and down that the only thing that helped with the chemo nausea was pot. Needless to say, to have my dad recommend drugs was a bit out of the ordinary, but I can't say I was that surprised.  Of course, then he joked about me getting stoned and the girls asking why I was acting so funny.

The pot helped, but the whole pot smoking thing was strange.  I'd usually smoke it in the bathroom in our basement.  Alone.  It felt pretty pathetic to smoke pot by myself in the downstairs bathroom.  There was only one time that I smoked with a friend and actually had a good time.   Most of the time I just smoked enough to help ease the nausea.  I guess it worked a little.

While I do love  my cocktails, overall I prefer the drugs that give me energy.  For my second chemo rounds I had drugs that gave me lots of energy.  I LOVED them.  But I couldn't take them for more than a day or two.  That's always reassuring, when you're told not to take drugs for more than a few days because of the potential side effects. 

So I guess that's the post.  In my head this post was longer, but I don't know what else to say. 

New beginnings

As I mentioned in my last post, a few weeks back I did a 5K with some friends.  Actually, now that I look at the calendar it was almost a month ago.  While the day didn't go quite as I had hoped it would, it was still a good day overall.  I was very pleased with my pace (7:42 miles) and the gesture of my friends getting together to celebrate the end of this hellish journey was great.

A few weeks ago I had my post-treatment check-up with my oncologist.  It was the first time I had been back at BI since the end of treatment on October 1.  I was unprepared for the anxiety that visiting the oncology department made me feel.  Obviously I don't have great memories of the place, but my feelings still surprised me.  As much as I like my oncologist and as much time as I'll be spending with her for the rest of my life (or until she retires, which will hopefully happen first), I still wish I had never met her.

We have finally rescheduled our California trip.  We had just booked our trip to California when I got my diagnosis.  It feels like a re-do in many ways.  We head out at the end of April.  I'm very much looking forward to it.  Aaron and I are also going away to Provincetown on MLK Jr. weekend.  No Iceland trip planned yet.  This is mainly my fault because work has been so busy and I haven't really had time to think about it.

As my hair continues to grow back, one of the nice things is I don't necessarily feel like I'm "the woman with cancer" anymore.  I've ran into old friends and met new people who compliment me on my hair without knowing about the last year (at least I'm pretty sure they didn't know) and it's so nice to just accept the compliment and move on.  Sometimes I've said something, but increasingly I don't say anything.  Well, I guess I say "thank you" for the compliment.  Also, people make eye contact with me again.  When I had my scarf, nobody would look at me in the aisles of Trader Joe's or in the hallway outside of work.  It was a very strange feeling to feel invisible but know that people were probably looking at me when I wasn't looking at them.

A lot of people have asked me if I'm going to keep my hair short.  I really have no idea.  I feel like it's in a very awkward phase right now.  I'm back to having to spend time on it in the morning.  It's not a bad problem to have, just something I haven't had to deal with for several months.


We had a good Christmas but words can't express how happy I was for New Years.  I actually started this post a week or two ago but never finished it.  As I read on what I've written in this post I can't help but think how boring my life has become.  Well, as boring as my life gets I suppose.  I love boring!