Rex Manning Day

I had to look up what Rex Manning Day was.  Even now I'm not sure I get it.

Anyway, today was Rex Manning Day, or as our doctors like to call it, Bilateral Mastectomy With A Side of Lymph Node Survey Day.

The lymph node survey came back clean.  This means that cancer had not worked its way into the lymphatic system.  That's good news.

Becky is in her room dozing on and off.  She's a little sore but that's to be expected.  The nurse is here now with some pain meds.  It's always good when somebody arrives bearing narcotics, isn't it?

If all goes according to plan we'll be back home tomorrow.

What's Happening to Me?

When I was a kid my friends and I used to read the classic coming of age books, “Where Did I Come From?” and “What’s Happening to Me?”.  Strangely,  I don’t remember the part about getting your breasts removed at 35. That’s probably because I was so focused on the hilarious pictures of naked people from the 70s.

Tomorrow is D-Day, or B-Day or M-Day, or Rex Manning Day.  Many of you have questions about what exactly will happen during the surgery.  If you do not want to know the details, then you should leave now.  Go find some videos that involve kittens and babies, preferably together. Then send the link to me. 

Tomorrow, I will have a bilateral (double) mastectomy. First, the plastic surgeon will make an incision. Next, the breast surgeon will remove all of the breast tissue. She will also take a sample from my lymph nodes.  If cancer is detected in the nodes, they will remove them.  Next, the plastic surgeon will insert temporary breast implants, also called expanders. Then it’s time to close up shop and send me to recovery.

If all goes well, the surgery should take less than 5 hours.  I will be in the hospital over night and home the next day.  Recovery should take between one and three weeks.

Over the next several months I will have a series of injections that will expand the temporary implants.  If my doctors determine I need chemotherapy, that will began after I have recovered from my surgery.  Chemo will last about 18-20 weeks, with a dose every three weeks.  When my treatments are concluded, I will receive permanent breast implants, not something I ever expected to say. 

I hope that clears everything up.  If you have any other questions, use google. That’s what the internet is for, Dummy.

Thanks to everyone for your kind words, love and support.  It has kept me well distracted, which has been invaluable.  I love you all.  Well, not all of you. Some of you I’ve never met.  But I’m sure if we did meet, we’d get along and maybe some day I would grow to love you.

Send your prayers, thoughts and ritual sacrifices starting around 10 AM tomorrow. 

 

Next time… J will post here and on facebook when I am out of surgery and in recovery.

The Bullshit of All Bullshits

Since my last post I've spent some time exploring the anger stage.  The other night, while slicing some vegetables, I felt so angry I stabbed the cutting board.  It was a cheap knife and a plastic cutting board, so the impact was minimal but it felt very dramatic and satisfying. 

Borrowed from the cinematic masterpiece, 40 Year Old Virgin "the bullshit of all bullshits” is a common expression in our home. Jason and I use it to express outrage at extreme injustice. For example, when you get your car back from a week at the dealership and the check engine light immediately comes back on. Or when you’re three feet from the finish line, and someone hits you with a blue shell, and Baby Peach goes tearing past for the win.  

I have decided that this breast cancer situation is the ultimate bullshit of all bullshits.  Not my case in particular, but breast cancer in general. 

The odds were against my family from the start. Approximately 1 in 8 women will be diagnosed with invasive breast cancer.It turns out that my mom, sister, both my aunts and I, are all women. However, it’s not just about my family. This issue affects us all. Every one of you is either yourself a woman or has, at some point, met one.  

This epidemic forces too many of us to face terrible options. No woman should have to choose between her life and her nipples. Take my case: I knew I was BRCA+, so my doctor recommended a preemptive double mastectomy. When we found out I had cancer he recommended...a double mastectomy.  That's right, our best option for preventing is the same thing as the treatment. What exactly were we preempting?  

To make it clearer to the menfolk, I will phrase it as a multiple choice question

Would you rather...

A) have your breasts removed 
     have at least some of your lymph nodes removed 

     lose your nipples (in most cases)

     never be able to breast feed

     lose all feeling in your breasts

     have permanent scars 
     be intentionally poisoned
     lose your hair
     have your skin turn grey
     live with weakened bones
     have hot flashes, just part of going through early menopause
     forget everything, sometimes half way through a sentence
     breakout like a teenager who uses Crisco as a facial mask
     experience pain...so much pain
     have everyone look at you with the sympathetic pity smile
     experience soul crushing exhaustion
     not have to worry about calories but everything tastes horrible
     spend the rest of your life hearing stories from people about the women they know who        died of breast cancer
     be marked up like a treasure map for radiation
     face a painful series of reconstructive surgeries, or worse, not even have that choice

OR

B) DIE?

These choices are total bullshit. The Breast Cancer Industry needs to get its head in the game.

Some charities and businesses are making a killing off breast cancer.  Literally. Women are dying. Please be responsible consumers.  Just because it's a certain color doesn't mean the money goes somewhere good. Check how much goes where. Or even better, stop buying products that put a pink ribbon on the package but are full of known carcinogens. 

Breast cancer gets more attention than other type of cancer and we still have so far to go. Women have been walking like crazy and buying pink everything for years and I’m still having a double mastectomy on Thursday. Fun fact, that's the same procedure George Washington's mother in law had when she had breast cancer.

What about the medical research community and pharmaceutical industry? Not to be the person who brings up viagra, but you can’t have sex with your wife if she died of breast cancer.  Well you can, but that’s a whole different blog.

I know that there is potential for ineptitude and misappropriation in any charitable organization.  The breast cancer industry is not unique.  But this is the thing I have. And it’s the thing my sister has and my mom and my aunts. And I’m angry.

We need more research. We need more direct services. We need to help the people who have and save others from having it down the line.  We don't need more education. We don't need more awareness. We need answers, we need help. 

So enough with the cute t-shirts and the pink bullshit. What can we do to make this stop? To have better options?

Let's make sure that my niece isn’t writing a blog like this in 30 years.

Next time… surgical update.  I will make sure that someone posts an announcement when I am out of surgery.  Thanks, as always, for the love and support.  

Dr. Feel Bad

There are lots of things you never want to hear a doctor say to you. “You have cancer” is pretty high up on that list.  Surprisingly, there are some other things that can be almost as upsetting.

Over the last month and a half, Jason and I have picked up two new hobbies: filling out forms and meeting doctors. We have been lucky, for the most part, in our choice of doctors.  Most have been compassionate and professional.  Still, even the best doctor can say things that are insensitive, unsettling or just plain absurd. For example:

How is your family taking the news?

Great! They're so excited that I was able to get started on this so early in life. 

Would you like me to speak with your family?

Of course not. You seem like a very nice man. You shouldn't have to go through that.

As I said, most of our doctors have been wonderful, but there is always the exception to the rule.  Two weeks ago we met with a plastic surgeon. Because she has naked pictures of me, we’ll just call her... Dr. Wrong.

Here are some of the more disturbing things she said to us during that encounter

Wow! That’s a big bra!

Thanks?

It’s not a matter of whether you’ll have complications, it’s a matter of how bad they will be.

Maybe you should consider another line of work.

Your breasts are droopy.

Yes, but we’ve been through a lot together, so I’ll thank you not to insult them in their final days. Also, how is that relevant?

Are you squeamish?

Yes, so perhaps you should have asked that before opening those images of a woman’s internal organs on your 65" monitor. 

The scar will go from hip to hip, and it won’t ever go away.

Maybe you should work with dead people.

One option is to sew cadaver skin onto your body.

No. That’s how you make zombies.

I perform this procedure like...I dunno, maybe once a month.

So you’re not really an expert.

You may want to consider seeing someone else for the procedure.

Way ahead of you.

This is my office manager. Her face is peeling because she had a chemical peel last week. Take her card.

Sure. I look forward to throwing it out immediately.

We were in the car for about two minutes before I was on the phone with another plastic surgeon.  We met with him yesterday, and although some of what he had to say was upsetting, at no point did I want to punch him in the throat.

Picking a new doctor did push back our schedule, but it was totally worth it.  I will be working with this doctor for a long time and he should be someone who inspires confidence, not horror.  Also there’s complimentary chocolate and lip balm in his waiting room.

My surgery is scheduled for June 20.  I am both excited to be moving forward and terrified that this is really happening.  I appreciate all of your love and support as we move forward. 

How to Tell Friends and Unsettle People

As you may have noticed I have tried to respond to my diagnosis with humor.  I do not mean to diminish the seriousness of my illness. Like too many of you, I know what it is like to watch a loved one suffer with this terrible disease.  I hope that my comments do not offend anyone who has been affected by cancer. 

However, for whatever reason, the only thing I can think to do is crack wise. Maybe it’s to make myself feel better or because it puts others at ease.  Or maybe it’s because I’m afraid the moment I stop laughing is the moment I won’t be able to stop crying.  So let’s all stay positive and keep laughing, because the alternative is unacceptable.

Now back to the funny….

  

So you found out you’ve got breast cancer. What next?

After you’ve told your family and binged on junk food, it’s time to start telling your friends.  My sister says she feels stupid actually saying the words “I have cancer.” She says it feels too dramatic, but there’s really no way around it.  Believe me, I’ve tried.

The first few phone calls were ok, but after a while I got tired of telling the same story.  I started e-mailing and even texting. Telling people about my cancer has surprisingly led to some amusing moments.  For example, when J told his unintentionally hilarious Russian co-worker, he summarily dismissed my cancer as boollsheet.

Here are some other funny coming out moments:

Via Text

Me: I have boob cancer

X: Who is this?

Me: It’s your favorite hip-hop desk chair dance partner.

(Long pause)

Me: Is this Rachel?

X: No. No it’s not.

Frankly, I'm a little hurt this stranger didn't at least say something comforting. Then we could have become text buddies and it would make an amazing story of friendship.

When one of my non-cancer doctors called to yell at me for missing an exam:

Dr. B: Hello Becky, how are you?

Me: I’ve got breast cancer

Dr. B: I’m going to need to change the tone of the conversation I was planning on having with you.

E-mail to a law school friend (and obviously my breaking point)

Me: Who’s got two boobs and a tumor? This gal!

After notifying several dozen people, I finally decided to go full public and post on Facebook.   It was late at night, and I worried I would regret it in the morning. Instead, I was absolutely overwhelmed by the number of posts, e-mails, private messages, texts and phone calls I received.  I was actually overwhelmed.  Seriously.  After reading everything, I went back upstairs and took a nap. 

It’s taking a while but I think in another 30 or 40 years I will be able to get back to everyone who contacted me. I have found that responding to people is a fantastic distraction.  Plus it gives me a chance to try out some of my hilarious cancer jokes before posting them here.

I don’t think there is a right or a wrong way to tell people that you’re sick.  Well, there are probably some wrong ways: skywriter, carrier pigeon, smoke signals, robo-call or candygram, for example.

Initially, I actually spent a lot of time worrying about how to tell people. In fact it was the hardest part of this process so far, but I think I figured it out.  It’s not about them.  It’s not about how they are going to react. It’s not about making them feel better.  It’s about doing what you need to do in a way that is best for you.  Just as long as it doesn’t involve a jumbotron.  

Next time...Things you never want to hear from a doctor 

May Day

I was so disappointed in my sister when I found out she had breast cancer. We had always agreed that, like our mother and two aunts, we would not get breast cancer until after menopause.  She broke our deal. 
 

It was my sister’s diagnosis and my mother’s nagging that got me to meet with an oncologist.  We discussed my family history and he recommended I have a mammogram and MRI.  Most women don’t start having these until later in life, but we’ve always been a family of overachievers.

Ladies, if you’ve never had a mammogram, there are only three words to describe it. A. Maze. Ing. Hopefully my experience will provide you with some valuable insight and tips for your first mammogram.   

First, I was led to a dressing room where I put my clothing and possessions into a locker and in exchange got a small key with a safety pin on the other end, reminiscent of those you would find in skating rinks in the 80s and 90s.  You know, with the plastic orange top that has the locker number printed on it. 

Next, I got to sit in a so-called relaxing room. No amount of fake orchids will help you relax when you are wearing a pink robe and sitting in a waiting room next to a stranger. My favorite feature was the overzealous wall-mounted fountain.  The splashing was so out of control that one woman actually got up and rearranged the rocks in an effort to stem the tide.  Surprisingly, I was not that woman.

Next stop, nipple markers.  Nipple markers are tiny band-aids with metal snaps where a normal band-aid would have gauze. Make sure to leave these on as long as possible so it really hurts when it’s time to take them off. 

At some point in her life almost every woman wishes her breasts were a different size. Some wish for larger breasts, some wish for smaller. This is never more true than at the moment she is having a mammogram.

A very apologetic woman helped me position myself in the machine.  It had two glass plates that smashed my breasts into pancake thickness and shape.  This was first done horizontally and then vertically.  If that mental image makes you uncomfortable, you should imagine how I felt.

Then it was time for a sonogram.  They used a machine to look at my tissue, which produced images like the ones they give pregnant ladies. I think I saw my breast’s tiny heart beating.  That’s where they finally told me there was something funny.  Not funny as in “ha ha”,  funny as in “there’s a mass in your breast.” 

After that I was sent for an MRI.  I had to lay on my stomach inside a very small tunnel while a woman gave me a play by play of what she was doing to me.  “I’m sending a liquid through your body right now that will let me see the contrast.”  I would prefer she kept this to herself and let me concentrate on the fantastic disco medley of the songs from Star Wars that was playing on the Pandora channel chosen by the patient before me.  

Finally, I was released back into the wild.

I was not surprised when they told me to come back for a biopsy. A few days later my amazing boyfriend Jason took me back to the hospital for this procedure. More nipple markers, sonograms and mammograms.  The doctor was running late so, the Breast Navigator (actual job title), tried to distract me with small talk. No, Breast Navigator, Logan Circle is not near Cleveland Park. After lying topless with my arm above my head for half an hour, a doctor came in and took tissue samples.  Jason patiently sat there while they stabbed at me, pretending to read the Hunger Games on his kindle.

On May 1, we got the call from my doctor. I think he took the news harder than we did. Seriously, if you're that upset a stranger has cancer, you may be in the wrong line of work. 

I spent the next half hour calling people to pass on the big news.  My father probably said it best “Ah, nuts. This family just can’t catch a break.” 

As I often do during times of extreme stress, I took a nap. Jason spent the afternoon working in the yard.  Later we went out and bought tons of junk food, because that’s how we do. It’s amazing how cancer can put life in perspective.  Of course I deserve the birthday cake flavored oreos, I have cancer. Want a pepperoni pizza? Sure! You just found out your girlfriend has cancer, you deserve it.

Henceforth, in our home, May Day will be celebrated by the consumption of truly disgusting junk food. Please feel free to adopt this tradition in your home as well.