The "R" Word

Valentines Day 2012 is the first time I officially heard the "R" word.

That word?

REMISSION

At my doctor's appointment today, I asked if I was in remission and he said YES!

I asked if I would ever be considered cured.

That answer was a little more complicated.  Once you have cancer, you are never really considered "cured."  Though, my status will officially be remission for about 3 years, then it will change to "cured."  But, in cancer terms, there is no cure.  Not really.  It's never 100%.  But, being "cured" means that the cancer is less likely to recur.  However, as my doctor said, he's had patients end up with breast cancer again 12 years after being "cured."  CURED is not a word they throw around lightly.  Because, there is no cure for cancer.

Yet.

For now though, I was so excited to hear the word REMISSION!  There is no trace of cancer in my blood.  There is a special blood test that is done on cancer patients called a Tumor Marker Test.  That test, along with other blood work ups, can show the presence of tumors in the body.  All of my blood tests are coming back completely normal now, meaning there is no indication of any cancer lurking.  The blood tests aren't 100% accurate, of course, but doctors can watch trends over time in blood work of cancer patients to ensure that treatments are working.

I finished chemo in October and, after my hysterectomy in January, I began taking a cancer drug called Anastrozole.  This is an oral cancer treatment, a little pill that I take every day.  I'll have to take it for the next 5 years (at least).  That is how long it's shown to be effective.  In 5 years, I may take nothing or I may be switched to something different.  It depends on what advances are made in the next 5 years in treating cancer.  Those are decisions to be made later.

Anastrozole

Anastrozole (also known as Arimidex) is one of two main drugs prescribed for cancer patients after chemo.  Anastrozole is the drug prescribed for women to treat breast cancer who have already gone through menopause.  Since all of my lady parts are gone, I am officially menopausal.  Anastrozole is used to further decrease the amount of estrogen your body makes.  Since my body apparently likes to take estrogen and use it to make cancer, this is a good pill for me.  Women who are pre-menopausal often take Tamoxifen.  Tamoxifen counteracts estrogen in the body by making sure that estrogen doesn't help cancer to grow.

Neither drug is completely effective against cancer.  But, the odds are good.  Anastrozole is 1-2% more effective than Tamoxifen.  It's not a huge amount, but I have rotten luck so I'll take whatever edge I can.

The side effects of these drugs are pages long.  Every thing you can think of COULD happen. Fun stuff like cataracts and hot flashes. Luckily, after a month of taking Anastrozole, I'm doing well and tolerating it.  I do have some definite aching in my joints and overall soreness.  It's hard to say if that is a side effect of the cancer drug or not.  It could be leftover from the chemo.  Or it could be a result of sitting around like a lump for the last 9 months.

Whatever the reason, I still look like I'm about 70 years old when I get up from a chair or start walking.  It's a super sexy look.

Time will tell if the cancer is really gone from my body completely or just hiding somewhere.  For now, I'm very optimistic and I so much like my new word:

REMISSION!

Love Story

My husband, Greg, returns from a business trip in Orlando tonight.  He's been gone for four days.  I have missed him so much and there have been times over the last 4 days that my chest has actually ached.

I'm really not a sappy emotional person.  Sarcasm comes easier to me than sap.  Though I tell my husband, kids and even friends that I love them all the time.  Including my best friend, Shereen, who is highly embarrassed by my girl love for her.  Yelling "I LOVE YOU" across parking lots gets me a great reaction from her - usually a look of complete disgust and mortification.  I do love her, but now I usually tell her to see what reaction I'll get.  It's fun.  I have to find joy in my life where I can.

Anyway, in our household, "I love you" is said easily and often.  I want our children to grow up surrounded by hugs, kisses and I love yous.

Greg has traveled for work before.  It's not frequent but it does happen once or twice a year.  The last time he left was a week in June of 2011.  It was less than a month after I found out that I had breast cancer.  It was very hard to see him go and very hard to be alone with my thoughts during that time for a whole week.

This time, even though he was only gone for four days, was harder.

We've been married for 13 years now.  Yes, I've always loved him.  Yes, I've always thought he was hot.  And yes, I want to strangle him sometimes.  Like how he can't manage to figure out where some of the dishes go in the kitchen despite living here for 8 years.  Or how he makes a mess of the toothpaste (solved by buying each of us our own tubes - I don't care what he does with his toothpaste now).  And when he throws his socks in the hamper all rolled up in little balls!  Oh My!  It you want to see what me having a conniption looks like, try that.

Greg and his boat.

But, ours is an epic love story (in my opinion) that started on January 14, 1998.  I remember it so clearly.  I had come home from yet another disastrous date and sworn off men...again.  I was on my computer and came across the Yahoo ads for singles.  I thought I'd browse a little, maybe find someone nice to be friends with.  I found Greg.  There he was with a profile set up, a picture of him sitting on his boat, saying he wanted a pen pal.  He was from Washington State but was in the Coast Guard and stationed in the Bahamas (poor thing - rough life).

I thought, "Hey!  A pen pal!  Just like back when I was in elementary school!  How cool!  I want a pen pal!"  I wrote to him.  I wrote to him because he said he just wanted a pen pal.  I wrote to him because he said he wasn't looking to get married.  I wrote to him because there was no pressure for it to be anything more.

He wrote back the next day and that began our relationship.  Fun emails and messages back and forth.  We were getting to know each other. He had found out that he was being transferred back to the west coast (originally to Seattle but it was later changed to San Francisco).

Greg and the infamous car.

On Valentines Day 1998, he called me on the telephone for the first time.  It was awkward.  We talked for 30 minutes and he spent about 28 of it telling me about his car.  He emailed me right after we hung up and said, "I can't believe I talked about my CAR the whole time!"  He had been so nervous.  It was cute and I liked him...but I was determined to not get too serious about some weirdo I hadn't even met! (I made it a rule to only get serious about weirdos I HAD met!)

Over the next few months, we talked on the phone several times and he sent me cards and gifts.  In May, he was on leave for a month during his transition from Nassau, Bahamas to San Francisco.  He was staying the month with his parents in Eastern Washington.  After he arrived, I made the trip over for the day to meet him.

Chipper - we were fast friends

It was the first time we would ever meet in person.  My Mother was a nervous wreck, sure that I would be murdered.  I was on my guard, but I trusted him already.  As I walked up the pathway to his mother's house, I saw him standing on his boat and he invited me up.  He showed me all around his boat and then I met their dogs.  He took me for a tour around the town he grew up in and then to dinner at Red Lobster.  At dinner, he ordered the "All You Can Eat" crab legs and was instantly mortified when the waitress brought him a bib to wear.  He tentatively asked, "Is wearing a bib on a first date a deal breaker?"  I laughed and said that I didn't think so.  I thought he was cute and nervous and charming.  He admitted later that he only ate one bucket of crabs, but he could have eaten two.  He also later told me that the first question his mother asked about me is,  "Did the dogs like her?"

He was the perfect gentleman the whole time (darn it) and, after meeting his mother, we parted ways.  He asked me to call after I'd made the 3 hour drive home.  I was sure that he would ask me out again.  When I did call him, he told me he had a great time and that he was glad I was home safe.  And that was all.  I was disappointed.  He obviously didn't like me.

I soon received a message from him that said, "I can't believe I didn't ask you out again!"

And that's all I needed.  We spent every moment we could together over the next month, traveling back and forth to be with each other on my days off.  He first kissed me after a day of shopping.  He met my friends and I remember my friend Tanya asking if he had hair underneath his hat.  He had always worn a hat.  I told her, "Gee, I don't know!"  (He didn't) My Mother asked if he owned pants, since he only wore shorts. (He did)  He met my father, who was in a nursing home at the time, and after we left, my Mother later told me that she turned to my father and said, "She's going to marry him..."

I was devastated when, in June of 1998, he had to move to San Francisco.  We said goodbye with plans to visit each other.  He spent a long first day driving before calling me from somewhere in Oregon to check in and let me know he was okay. That was the first time he told me he loved me.  And I said it back.  And I meant it.

We took turns flying back and forth every weekend to see each other.  He asked me to move in with him and I told him No.  Two months later, on my 29th birthday, he proposed.  He was so nervous all night and kept grabbing his pocket.  I knew he was up to something.  We had already talked about marriage and looked at rings.  It didn't really come as a big surprise.

He took me to a beautiful restaurant on the waterfront and then we walked out on the pier after dinner.  I had joked with him that if he brought me a Carl's Jr. burger, I'd do anything.  There being no Carl's Jr. restaurants in Seattle at the time, I missed those yummy burgers.  When he knelt down on the pier and pulled out a Carl's Jr. bag, I laughed.  I was a little worried that there was only a burger in there - but instead, there was an engagement ring in the bag.  A much better surprise.  (He ate the burger, he admitted)

Newlyweds in San Francisco

We married on January 14, 1999; a year to the day of our first email.  At the end of January, I quit my job and left all of my family and friends and my adopted home of Seattle, to move to San Francisco with him.  It was a very hard move on me and on my Mother.  My father had just died 5 months earlier.  I left everything behind.  I cried as we left Washington.  I cried when we entered California.  I cried when we got to San Francisco.

How well did I REALLY know this strange man?  I had left everything behind for him!  What if he really was an axe murderer?  I felt doomed. Due to my ridiculous sobbing, he was sure he'd married a lunatic.

He promised to bring me back to Seattle when he retired from the Coast Guard in three years and he did.  In February of 2002, we came back.  This time with our new 6 month old daughter.

Here we are.  This many years later.  Two kids.  Three dogs.  One cat.  A new job for him, a new business for me.  A house payment.

And we are in this together.  Oh sure, he drives me crazy.  Oh sure, we've fought.  We've both threatened to leave.  We've both gotten as far as the garage before turning back and fighting for us, fighting for what we have built and, ultimately, forgiving.  I have always loved him, even when I haven't liked him much.

He has always taken care of me in so many ways.  But when I got breast cancer, he became my savior.  Not only did he take care of me (as he had so many other times when I'd been sick) but he reassured me.  He helped convince me that a double mastectomy was the right choice.  He wanted ME.  He wanted me to be alive.  Breasts don't matter.  Not really.  He held my hand.  He wiped my tears.  He held me.  He packed my wounds.  He took care of  me, yet again.  He took care of me in a way that neither of us ever imagined.

And he's still here.  I'm a 42 year old woman with braces (which has nothing to do with cancer, but they are ridiculous nonetheless). I have nothing where I should have breasts.  I have stubble where there should be hair. I have no ability to have more children.  I've lost so much that makes me a woman.

But, as he's reminded me, he fell in love with me.  Me!  Not my breasts (though, let's face it, those were nice). Not my hair.  ME!

Ours is an epic love story.  One that we keep adding to every day.

Now if he leaves me for some young chippy with perfect teeth, long hair and boobs; I'm going to run him over with my car.

Boob Count: 135

Don't Be Afraid, Be Informed

DON'T BE AFRAID, BE INFORMED

I swear I just made that up this morning.  About 30 minutes after I posted about Susan Niebur dying from Inflammatory Breast Cancer - I thought that up and then added it in.  It sounded profound.  I like to be profound...and stuff.  Profound thinking doesn't always come easily to me.

Then, I started really thinking about the phrase I'd just made up.

Tanya's Cat, Schnookums.  Wearing
a hat.  Not weird at all.

Last night, I had dinner with two wonderful friends, Tanya and Christy.  I have known Tanya for nearly 17 years (neither of us could be THAT old, could we?).  Tanya was one of my first friends when I moved here to Seattle. She's funnier than she knows and someone who will do anything for a friend (Remember that time I called you at 2 a.m. Tanya?).  Tanya and I lived together for more than a year before I got married.  We have had so many fun and silly times and I have the pictures to prove it!  Despite dressing her cat up in hats and weird outfits, she is a keeper - as a friend and as a person.

Tanya in Africa last summer.
Awesome picture!

Sadly, Tanya soon has to have surgery for a torn ACL.  I asked her some questions about her surgery and she wasn't sure about some of the details.  She said that she got so woozy in the doctor's office listening to the details that she thought she would pass out and all she could focus on was not falling off the table on to the floor.

I SO remember being like that!!  I was always like that!  Want to revisit my post about my fear of needles as proof?  http://aboobflewoverthecuckoosnest.blogspot.com/2011/05/needles.html

Any mention of medical procedures sent me spiraling. I felt sick to my stomach, I concentrated on the floor, the ceiling, the door, the doctor's shoes, ANYTHING but the scary information I was getting! "Is it hot in here?" I'd think to myself trying to not vomit.  I didn't ask questions, I just wanted to get it over with. I refused to even READ about things like breast cancer - maybe reading about it is contagious!  I never wanted to tempt fate.  I never wanted too much information.

It was okay though.  I didn't need a lot of details.  Not really.  Like Tanya's torn ACL, nothing life threatening had happened to me.  Things like torn ACLs are not fun and they can be painful - but, like Tanya, I didn't really NEED to know all the details.  I could trust the doctors and trust that things would be okay.  And they always were.

And then I got renal cancer.  And five months later I got breast cancer.

And I learned fast.  I needed to know things.  I needed to be aware and informed.  I needed to be knowledgeable and be able to advocate for my health. No more blind trust in doctors.  No more literally putting my life in the hands of others.  No more near passing out in the doctor offices.  I had to be present and clear headed.

It's not easy.  It's not easy to stay calm when all you want to do is cry or curl up in the fetal position or run away!  Especially run away.

But you MUST do it.  You MUST be informed.  You MUST know it's out there.  Know the symptoms, know what cancer looks like.  Don't be afraid to be a bit of a hypochondriac.  If something looks different, if something changes....chances are everything is fine...but it's possible that it's not fine.  I pushed to have my hysterectomy done quickly.  The doctors told me there was no rush.  The doctors said I could wait.  The doctors said nothing was wrong.  I had a hunch.  I had a feeling.  I had knowledge.  I was right.  They DID find something - my doctor told me I was right.  Pushing to have it done quickly may have saved my life (again).

As hard as it was for me to face a breast cancer diagnosis.  As hard as it was for me to go through surgeries and chemo and various other unpleasant treatments.  It's still all worth it. I didn't shy away.  Sure, I cried a gallon of tears.  Sure, I spent nights curled in a fetal position in bed.  Sure, I think about dying every single day. Sure, it's taken an immeasurable toll on me physically and emotionally.

But, because I mustered all the courage I have and pushed forward - because I didn't ignore it - I'm here today with hopes of living a longer life.  With hopes of seeing my kids grow up.  With hopes of being around to spend many more years with a wonderful husband and living a wonderful life.  With hopes of making a difference in the lives of others.

Don't be shy when it comes to your health.  Don't be uninformed.  Don't wait.

Don't be Afraid, Be Informed.

"You Don't Have to Have a Lump to Have Breast Cancer"

A dear friend died yesterday.  I call her a "dear friend" even though I only even knew about her for 3 days.  I never met her in real life and now I never will.  I usually make it a rule to not read books or blogs about breast cancer by other people because I don't want their thoughts to somehow become my thoughts accidentally.  Plus, it's usually so depressing to read what people have written.

I've made an exception in this case and now I must know this woman - I must read her words - to honor her.

Susan was only 34 when she was diagnosed with Inflammatory Breast Cancer in 2007.  It is the rarest type of breast cancer but also the most deadly.  And it's a type of cancer that presents WITHOUT a lump!

Please read her post about Inflammatory Breast Cancer here and be aware of the symptoms to watch for:

http://toddlerplanet.wordpress.com/2007/07/23/inflammatory-breast-cancer/

Susan Niebur leaves behind a husband and two boys, ages 4 and 6.

DON'T BE AFRAID, BE INFORMED!

Swimsuits

Do you know how hard it is to find a swimsuit when you are boobless?!

It's hard.  Really hard.  If you think buying a swimsuit with a normal body is hard, try finding one when you have no breasts. And, in the place of breasts, you instead have scars and Shar Pei skin.  It's not a good look in the first place and I really don't need to be emphasizing it with LESS clothing.

I actually tried on the swimsuits I do have from before the mastectomy.  To say that I look ridiculous would be a huge understatement.  I used to really like both of my swimsuits.  They were cute and stylish (well, for an old lady like me) and I thought they flattered what little I have that is "flatter-able."  But now, without breasts, it's just bizarre.

I'm not a small girl and, lucky for me, swimsuits come with built-in bras.  Before my mastectomy, before I had cancer - back when I had boobs - this was a good thing!  You need that built in contraption to keep the boob-age from going anywhere - or from looking like you need to belt them in.

But, now that I don't have breasts, I have two (well, let's just say it) HUGE empty crevasses.  Not only is it not a good look but it kind of makes me a little sad actually.  Looking down and having nothing where there used to be "something" is disheartening to say the least.  I guess I could still wear it and then I would, at least, have a place to put my googles and maybe a drink and snack.

One of my choices - I'd look like
a palm tree!

But, because I love to swim, I know that I have to find a more permanent solution.  I took to the internet to find a "mastectomy swimsuit."  Sure, there are quite a few choices!  Some are actually cute-ish.  Some are ridiculous.  Most are high necked which is a good thing.

However, the catch is that most of them come with the pockets to use so that you can put a breast form in them.  A breast form is a prosthesis type of contraption that women can wear in bras or swimsuits to make them look like they still have breasts.  Wearing a breast prosthesis is a completely individual choice.  A lot of women do, a lot of women don't.

I don't.  Not having breasts doesn't bother me too much most of the time.  Though, it's winter now and I'm able to hide a lot with scarves and sweaters.  I think it'll be harder once it's summer.  But, I just don't think breast forms are for me.  Maybe not having breasts is my badge of honor right now.

A breast form for swimming.
Sure, it looks innocent...

However, all of the mastectomy swimsuits I've seen so far (that I would actually consider wearing) have the pockets so you can put some fake boobs in them.  This greatly concerns me.  I don't feel very confident that these breast forms will STAY in the place where you put them!  This is all I need - to be happily swimming along when one of those puppies pops out!  Do they float or sink?  I don't really want to find out!  It'd be just my luck to lose one of them and then have it get sucked down the pool drain.  Then I'd only have one!

I'm stuck in swimsuit shopping hell right now.

Boob Count: 134

Precarious

I went to my two week check-up after the hysterectomy a few days ago.  It's supposed to be a pretty uneventful appointment.  Just checking in to make sure you are doing okay.

The doctor said the main reason they have the two week check-up is to remind patients to stay DOWN and not do anything and especially not lift anything.  You feel pretty good after two weeks, he said. He's right, I do feel pretty good!  A few aches and pains here and there - my abdomen is a little sore to the touch - but otherwise, I do feel way too good for just having had major surgery less than 3 weeks ago.  This is, by far, the easiest surgery I've had in this cancer journey.

My doctor said that a lot of people feel that way.  BUT, the way that my surgery was done means that I have stitches in the back of my vagina.  "Stay Down!" he warned.  Even though the stitches are well done - they could still FAIL if you overdo!

EEK! - when I heard that, I was a believer!  No more contemplating vacuuming the floor or painting the ceiling.  (I wasn't really going to paint the ceiling - I added that in for dramatic effect.)

As I sat perched up on the exam table (fully clothed this time - a rarity at the OB/GYN office), Dr. Brinkley rolled his chair over with his laptop so that he could show me the pathology reports from the surgery.  This is where the "uneventful" appointment I was expecting took a turn.

Nothing was found on my ovaries or uterus or cervix.  However, on one fallopian tube, they found a mass.  They wouldn't categorize it as cancer - but it wasn't necessarily benign either.  It was "atypical."  It was still small but, whatever it was, was growing.  We caught it!  He said it was very VERY good that I had this done NOW!  I had really pushed for it - to have this surgery done as soon as I could after chemo even though the doctors told me I could wait...wait a few months.  I just *felt* that I needed to do it.  I just *felt* that time was ticking.  But, still, I never expected that anything would be found.

I don't know why.  You would think that, by now, I'm used to hearing this kind of news.  You would think that I'd be prepared for the words, "We found something..."  Maybe you are never prepared.  Or maybe I'm just an eternal optimist.  Or maybe it's some crazy coping mechanism.

Nevertheless, I was stunned.  I didn't expect this.  In that moment, life felt so precarious to me.  So fragile.  

What else is in my body that shouldn't be?  What else is there that I don't know?

I spent the next several days reeling from the news.  I thought a lot about death.  I started calculating years and making deals with God.  If I could make it 10 more years - I'd be 52, my kids would almost be grown.  It's still young to die, but it's better than now.  What about 20 years - I'd be 62, my kids would be out of college and maybe even married or have children.  Is that too much to hope for?  Asking to live 30 more years seems selfish under the circumstances - I'd be 72.  Could I have 30 more years in me?

Please God: 30 more years!  Please God: 20 more years - I'll help old ladies across the street more.  Please God: 10 more years!  Just let me see my kids grow up!  PLEASE!

Everyday, we take life for granted.  It seems so easy.  We go about our daily routines - we don't question that tomorrow will be there.  But, when you are "sick," when something threatens your health - you start to wonder how much time you really have left in you.  Sure, I look both ways when I cross the street, I wear my seat belt, I don't play with matches - none of that matters when your body decides to fail on you.  There's nothing you can do.

I hope I have at least another 30 years in this body.  But, I know that, at any minute, I could be sitting perched, once again, on an exam table hearing those same words that I dread, "We found something..."