Six years: Moving onto two hands

Well.  To say this past year was challenging would be an understatement.  The upside of the bad year was it was completely non-health related.  I was laid off about a year ago and while I've had some contract gigs here and there, I continue to search for a new permanent job.  Around the time I was laid off, we broke ground on expanding our house.  The four of us were living in the basement.  All in all, it was worth it and I LOVE our remodeled home, but it was a stressful process.

Needless to say, I was ready for 2018 to be over.  We adopted a dog in mid-January of this year, because why not?  A friend recently said to me, "you like chaos in your life, don't you?"  Perhaps I do.  It's like having a toddler again.  Except he'll never get beyond his toddler years.

My health is still fine.  I continue to feel old and achy from my aromatase inhibitors, but as long as I do my stretches religiously, I'm usually pretty good.  That being said, I don't think I'll ever be my old self.

A Friend's Diagnosis
Out of nowhere a few weeks ago, somebody close to me got her own cancer diagnosis.  Unlike me, she's private and doesn't want the world to know, so I'm respecting her privacy as best as I possibly can.  But watching her journey these past few weeks has brought up a lot of anger.  Anger at our healthcare system and anger at cancer.

I originally wrote out a whole long post about this, but it was becoming a stream of consciousness more than anything else that was going to make zero sense to anyone but me.  I'll save you the reading time and summarize my friend's experience as such:

• Dana Farber's clinicians get an F in patient care.  Long story short, my friend's first meeting with her oncologist and surgeon was a disaster.  Her team disagreed with each other on next steps and there didn't seem to be a sense of urgency on getting her cancer staged so a treatment plan could be created.
• Dana Farber's Patient Advocacy team is a joke.  At a DF employee's recommendation, I called Patient Advocacy on my friend's behalf to share her experience.  The woman I spoke to didn't listen to a word I said and I ended up in tears at the end of the call.

When I received my diagnosis from my PCP the evening of April 3, 2013, I was at Beth Israel by mid-morning the next day.  I met with my onc and surgeon together.  It was an exhausting and overwhelming day, but BI organized everything on my behalf.  My onc and breast surgeon were kind and calm (well, not my plastic surgeon, who's different from the breast surgeon.  He was and always will be a sociopath).  As long as that day was, I felt like I left with a solid plan of what the next steps were.  I naively thought this experience happened to anyone with a cancer diagnosis.  Maybe it was my age at the time of my diagnosis, but everyone deserves to be treated like that no matter how old they are.

In the interest of full-disclosure, I also had a negative experience at DF when I went there for a second opinion, so going back there for a clinical visit brought back a lot for me. But that was six years ago and she'd be dealing with different docs and this is where she wanted to go.  Fine, I was fully supportive.  I was mortified on my friend's behalf about her terrible day at DF.  Thankfully when I spoke to my friend the following day, she was in agreement and knew she deserved better.  She has a second opinion scheduled at BI for later this week. Not as quickly as I'd hoped, but part of that is driven by them wanting her to get some additional tests done so they can begin staging her cancer.  At the very least, they are making her feel like a person and not a widget.  She's had nothing but great things to say to me about how professional the staff at BI has been thus far.  (Thankfully, since she went at my behest.)

I'm Pissed
What can I say--I'm pissed.  I'm pissed that cancer has its talons in somebody else.  I don't know what the future holds for my friend right now, but she's focused on taking things one day at a time. I'm pissed that she was treated so poorly but I'm hoping her future care will be better. 

Do you enjoy these check-ins from me?  They feel rather narcissistic at this point if I'm being honest.  And yet I keep writing them.

Five years: A whole hand of Breastivus!

Wow, I can't believe my diagnosis was five years ago.  That's a whole hand!  I didn't promote last year's post on any social media and yet eight whole people (perhaps Russian bots?) clicked through to my blog.  I've changed jobs a few times in the last few years, and as both of my daughters are now in elementary school, I've met lots of people in the last few years that have no idea about this part of my life (until they read this post, perhaps). At some point I make a decision with new friends and acquaintances to share my history.  Or sometimes I don't.  I have yet to come up with a graceful way to "come out".  It always feels overly dramatic.  A little bit like this post.  Fortunately, I'm enough of a narcissist to continue.

When I was diagnosed, my five-year anniversary felt like a milestone that was never going to happen. And yet, here we are.  I'm reminded of cancer any time I see my scars or take my estrogen-blocking meds.  So...daily.  I'm joking about the daily reminders (sort of).  I honestly don't spend a lot of time thinking about cancer.  That being said, I don't know a single survivor that hasn't had a scare or is at least a teensy-tiny bit worried about it coming back.  We've all known people pass away from this terrible disease.  Some have died from breast cancer, others have passed away from different cancers.  I won't speak for my fellow survivors, but I think the general consensus is if we were "lucky" enough to get it once, who's to say we won't get it again.  Recurrence statistics, no matter how low, aren't as reassuring as you'd think.

I'm still mentoring women through Dana Farber's SoulMates program and I'm very excited to share that I'm now a Board Member of Camp Kesem's Boston chapter. While cancer has affected me in profound ways, I don't let it define me.  Yes, it's a topic near and dear to my heart, as demonstrated by the fact that most of my volunteering time is cancer-related.  But there are plenty of people that have no idea.  And it's my choice to tell them.  Or not.

I wasn't sure how to celebrate this day.  One friend suggested champagne, and I liked the idea at the time, but for now, it's just another day.  I didn't even remember until halfway through working out this morning.  While the day sneaks up on me, it's not quite at the point where I completely forget about this day.  We've just started renovating our house and I was laid off a few weeks ago, so I'm trying to enjoy being unemployed for the first time in my life.  If it wasn't for the house prep I'd be crawling the walls with boredom.

I was hoping this entry would be profound and impactful.  Instead, it feels rather ordinary.  I think that kind of sums up life right now--back to the ordinary.

Four years and six days ago today....Happy Breastivus to me!

Wow, four years (and five days since I didn't post this on time).  I started the Breastivus tradition last year and I'm continuing it again.  As I reflect on what I wrote last year, I don't feel as achy as I did last year, but my brain seems to be declining.  If I'm tired (which is most of the time), I have an incredibly difficult time thinking of anything really--names, words, thoughts.  They're all out the window.  Add being tired and having a few glasses of wine and I really should just sit there and smile at you, not saying anything.  Because likely I won't be able to form a coherent sentence and it's not because I'm that drunk.

Aaron and I had a conversation about this post and the anniversary and what motivates me to write this post each year.  Yes I'm healthy and I've moved on with my life, as much as one can.  And if you read this and think "Geez Rach, it's been four years, get over it", well that's your right.  But I will say, this past April 3 I was still on edge about the day.  As much as it's a day I don't want to relive, inevitably I end up going back to that day.  I couldn't tell you the dates of any of my surgeries or my chemo treatments or when I started radiation, but I will never forget the day I was diagnosed with cancer.  I vaguely remember the day radiation finished but I always have to double-check the date.  It isn't any different from any of you that have had your own traumas.  I write about this day and share it with those of you who want to read it because that's just who I am.  Am I a narcissist?  I don't think so.  Self-absorbed?  Maybe.

What ultimately motivated me to write about this year's Breastivus is I had a scare this past Monday.  I was at work and saw this lump in my neck.  Maybe if it didn't happen to be Breastivus I would have been a little more calm, but probably not.  I was terrified.  I took a picture and sent it to my onc and she responded right away and made an appointment to have me come down the next morning.  It disappeared and reappeared throughout the rest of the day on Monday.  When I woke up on Tuesday it was back but smaller and of course by the time I made it to my oncologist, it was gone.  She was perplexed but not worried, which is really all I needed.  And of course it hasn't come back since.  But what it illuminated for me is that the fear of the recurrence doesn't go away.  And it also reminded me why I love my oncologist--she's so responsive even though she's dealing with a full panel of patients going through active treatment and she takes my concerns seriously, which I greatly appreciate.  Anyway, that was the start of my week.

In the meantime, Breastivus wouldn't be complete without an airing of grievances.  I'm pretty sure I've complained in the past about articles people post about things that give you cancer.  People I'm connected to have either stopped posting this or hide it from me because I haven't seen any in quite a long time. People do still post idiotic things on social media though.  This is one of my recent favorites:

In honor of someone who means a lot to me...I'm going to say goodbye to some of you...... now I'm watching the ones who will have the time to read this post until the end. This is a little test, just to see who reads and who shares without reading! If you have read everything, select "like" so I can put a thank you on your profile! Cancer is very invasive and destructive to your body. After you have finished your treatment, then, your body wants to go to war with yourself trying to reconstruct all the damage caused by radiation. It's a very long process.
Please, in honor of someone who died, or is fighting cancer, or even had cancer, copy and paste.
They all say: "if you need anything, do not hesitate, I'm gonna be there for you"... so I'm going to make a bet that less than 1/2 of my friends put this on your wall. You just have to copy (not share)!!!
I want to know who I can count on,.... Write "done" in the comment when you do.
To all those who are fighting... I am with you always! I hate cancer!!! 

Really?  I'm not copying and pasting this crap.  This does zero zilch nada in the fight against cancer.  Do not tell me what the cancer treatment does to the body.  You haven't had cancer (I'm assuming that nobody who has had cancer would post this), so while I appreciate you hate cancer and how its affected people you love, you have no freaking idea.  If you really hate cancer (and by the way, nobody loves cancer), donate your time or money to a worthy cause.  Don't post stupid things on Facebook.  And don't be the one to copy and paste either.  

On a positive note, I'm still mentoring women going through active treatment and I still love it.  I've also connected with one of my former Tufts professors who's gotten me involved in some exciting projects working with some very interesting women, all related to breast cancer.  That's all folks!

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: