lornagrl

Small price to pay....

I'm standing at a party trying to have a conversation when it happens.  First, my core begins to get warm, then warmer, and then warmer still.  Even though I'm well aware of this, I keep speaking as though everything was normal, as if there was not an inferno burning inside me.  Usually at this point, the person I'm speaking to is unaware of what's going on.  But this is temporary, because now my face is turning red, and the sweat is about to pour and not  little cute beads of sweat -  rivers of sweat - and not just on my forehead.  I will sweat from every pore in my body.  EVERY PORE.  Like Nixon. 

Are you alright? 

I never know what to say at this point.  Do I explain?  Do I tell the whole sordid story of why this happens if I drink wine or coffee, or it's  warmer than 32 degrees outside, or the heat is on, or most often - for no reason at all.  I often explain "it's hot in here" and wipe the sweat from each brow, with both hands.  And when I pull my hands away they are both very wet and I look around me - everyone is in heavy sweaters while I'm wearing a light blouse.  If the person I'm speaking to doesn't know me well, this usually ends the conversation.  I wonder if there thinking "Is she having a heart attack?  She looks too young to have a heart attack."  I excuse myself.

I go outside where it's cooler and although I can feel the cold on my skin, and my clothes are wet, I'm still burning up inside.  I wait for it to pass.  And wonder how long before the next attack?  Five hours?  Five minutes?

I went to the Brooklyn Museum of Art to see the Who Shot Rock & Roll exhibit.  I was relieved that the exhibit was air conditioned .   But after five minutes, I could feel myself warming up.  I had walked from Park Slope to the museum.  And a brisk walk, will often spur an attack when I stop, often when I arrive to a meeting, or a party.  I remember the first day of my new job.  My new boss was trying to greet me welcome me to the team and I was dripping. 

I sit down on a bench in the middle of the exhibit and wait for it to pass.  I contemplate taking off my clothes, but that probably wouldn't go over well.  I envision jumping, fully clothed into an ice cold pool.  I swear...one of these days..

I never used to sweat much, unless I was running.  I remember once, a few years ago I was meeting a Match.com date at a coffee shop.  He was sweating, and for the entire forty-minutes, while going over where are you froms and what do you dos I couldn't help but notice a tiny drop of sweat dangling from his left ear lobe.  It dangled the entire time was still there as we said our good-byes and he went his own way down Lexington Avenue. I remember nothing about this guy..but I remember the bead of sweat. 

So here I am now.  This is what I live with.  I've told this to my doctor.  It's unbearable, I tell her.  She offers me prozac, which is her way of telling me.. there's nothing we can do, it's part of the treatment..it's better than the alternative.

Lucky

I got my monthly injection today.  It's the one day a month I'm reminded that I had breast cancer.  Because I do it as late on Friday as possible - I have it done in the chemo-ward.  I'm taken to a treatment chair, just like any other cancer patient.  On Fridays there are usually not too many patients.  But today there was someone getting treatment. 

I was asking one of the nurses if the cancer center takes this new insurance I'm getting and this young woman spoke up from one of the chemo chairs.  She looked young and kind of hip.  Sort of an artsy look.  I could tell she was in for the long haul.  She had a medi-port on her chest. 

I asked her what kind of cancer she had.  She told me breast - her second time.  She was originally diagnosed seven years ago, had a recurrence four years later.  I didn't want to press but it was pretty clear she had metastatic disease.  Not because she looked ill.  As a matter of fact she looked healthy and strong.  She had all her hair, which could mean she was taking Herceptin.  Metastatic patients are often treated with Herceptin to control their disease.  It makes you very sick, but you don't lose your hair.  Herceptin is used to treat her2 positive breast cancer.  Her2 expression is very aggressive.  Women who are diagnosed with breast cancer under the age of forty often have this aggressive form of the disease. 

I did not.

That's not to say the cancer I had was not also aggressive, and deadly.  I remember my radiation oncologist telling me how lucky I was, and how unusual it was that I had just plain old garden variety ER positive breast cancer at 38.  The kind that old ladies get.

Before administering treatment, the nurses always ask our birthday before giving us any medication or procedure.  I guess this is to ensure they are giving the right treatment to the right patient.  I heard what her birthday was...

She's five years younger than me. 

Pay Cut...

I'm in a tough spot.  I just learned that my insurance rates are going way up.  To put it bluntly, it means a $1,200 annual pay cut.  

In addition to the more expensive premiums, my deductible is higher, and my co-pays are considerably higher. 

Of course I could take the other health plan, the cheaper one.  But doing so with my medical history could be life threatening. 

...and I'm not being melodramatic. 

It's time to weigh my options. 

nablo09 Haunted

I meant to do this in September but I was a little busy.  I've decided to participate in National Blog Posting Month for the month of October.  The theme is "Haunted".  Themes are optional but may be appropriate in this case because October is Breast Cancer Awareness Month.  But..you know that don't you.  How could you not? 

A few weeks ago I was in a bodega buying some orange juice.  When I walked past the beer aisle I noticed that a particular brand of hard lemonade was adorned with pink..in honor of Breast Cancer Awareness Month.  This was the first week of September..sort of like seeing Christmas lights on Halloween. 

Breast cancer is cancer that gets good PR.  It's pink and cute and frilly.  At least that's what the ads say..

Oh look.. breast cancer accessories.

...and my favorite..breast cancer sexy lingerie..

Let me tell you what happens to me when I see splashes of pink on subway ads, or a stupid pink ribbon on your lapel, or when the Duane Reade cashier asks me if I want to donate $1 to breast cancer research, or a retail clerk hands me a flyer for a free mammogram like she's giving away candy, or when I notice pink Philadelphia cream cheese in the deli in AUGUST.... 

I break into a cold sweat. Which is a relief since I now have hot flashes.  There is nothing cute, nothing frilly, nothing sweet about breast cancer.  When I see these splashes of pink, I am reminded of that little black cloud that is hovering over me. The one that tells me "you know that cancer you beat, well it can just as easily come back." except my cloud isn't a dark cloud.  It's pink. 

So.. yeah..I guess "Haunted" is a good theme for October.

We Feel Fine...

A few months ago I got an email from Johnathan Harris. He saw one of my photos from my 365 The Breast Cancer Edition.  It was a photo I took of myself after my third chemo treatment.  It is not one of my favorite photos.   It's kind of blurry actually.  They asked my permission to publish the photo in their book and I agreed. 

We Feel Fine is an art project in where they are tracking human emotions that are posted somewhere in social media, like MySpace or Flickr (where they found mine).  It looks for the phrase "I feel..."  and record their feeling and their basic location.  When I posted this photo I wrote " I seem to have two to three days of feeling yucky on the chemo. " 

The book comes out in December.

Picking colors..

I had the finishing touches of my breast reconstruction done on Monday.  The nipple tattoo.  The most exciting thing about this is that I got to pick the colors.  They gave me a pantone card so I could  choose, like I was selecting which color to paint my kitchen.  I'm not kidding.

I was told by the plastic surgeon that this was a primer.  I may need to get a touch up in a few years.

My number....

Jade Goody died Sunday morning.  It seems very strange to me.  She was diagnosed with cervical cancer in August 2008.  I remember seeing it on the news.  There were photos of her looking absolutely devastated and terrified and I knew exactly how she felt.  I felt so badly about her and I didn't even really know much about her.  I loathe reality television shows. I also wanted to send her good vibes and tell her..it's okay.  You'll do some chemo, maybe radiation, your hair will fall out but it will grow back.  It may even grow back curly.  You will get through this...

The weeks after I was diagnosed are all a blur.  What I do remember is  I spent hours and hours scouring the internet for other blogs.  I wasn't interested in statistics.  I never trusted them anyway.  I wanted to read about others who had been through it and pulled through.  I came across Karen's site.  Karen George found a lump in her breast but her Dr. didn't see the need to send her for a mammogram or a biopsy.  The Dr. even told her not to worry if the lump got bigger.  A year later, the lump was bigger and she developed a hacking cough.  Tests later revealed that the cancer had spread to her lungs and bones.  I sent her an email to see how she was doing and that I had been recently diagnosed.  This is the email she sent back..

I’m so sorry to hear that you were recently diagnosed with this terrible disease.  I know exactly how you must be feeling.  The uncertainty, the fear.  But I hope that it will ease your mind to know that I am currently in remission.

I had a pretty bad diagnosis.  Stage 4 with mets to my lymph nodes, lungs, and bones.  After 8 rounds of chemo, a lumpectomy and lymph node dissection and 6 weeks of radiation, I was cancer free.  Or so I thought.  About 10 months later cancer was rediscovered in my brain.  I had nine tumors, one was over an inch in diameter!  I had another 15 rounds of radiation and now I am once again in remission.  My doctors are completely amazed by my recovery.  In fact, I’m training for a marathon right now.

I want to tell you this because right now, I know it must seem completely overwhelming to you.  But, you can get through this.  It might be the hardest thing you ever have to do, but you can do it.  I am a huge proponent of Mind over Matter.  I believe with meditation you can assist your treatment and tell convince yourself that you will be healed.  Convince your mind, and your body will follow.

Please let me know how things go as your find out more about your staging.  Take care of yourself, Lorna and give me a call if you need to talk.

A few months later I learned that Karen's cancer came back.  It has spread to her ovaries.  She died in August of 2008. 

Tomorrow morning, I am going to see the plastic surgeon to have my nipples tattooed.  I was supposed to do this back in November but work kept me from it.  I kept putting it off for some reason.  I didn't know but I think it's because I hate going to the Dr. now.  After the procedure tomorrow I am going to my six month visit to the oncologist.  I have nothing to report to her.  I feel fine.  I'm not achy, or sick.  I'm not tired.  I have a healthy appetite.  I go to work everyday.  I see my friends.  A pill once a day.   A shot once a month.  That's it. 

Two women, one who gave me encouragement, another who I would have liked to given encouragement to, they are both dead.  I seem barely scathed.

Is my turn coming?

Hats.....Fabric....Boobs...

I spoke to a woman a few days ago who had no idea I had breast cancer. She was telling me about some lumps she's had checked every six months for the last few years, and how stressful it's been. I told her that I knew what she was talking about. REALLY knew, and then told her my story.  How I had breast cancer, and went through chemo, radiation, and a double mastectomy with a tram flap reconstruction.  She was shocked to say the least.  She has only known me for a few months.  She had no idea.  (she also kept looking at my boobs.  They always do.) 

She of course had a bunch of questions for me.  I didn't know what to say.  My views on breast cancer are so skewed.  I didn't want to terrify her.  That yes, most likely her lumps are benign, she has been watching them for years, they haven't grown.  But the truth is they can't tell weather a tumor is malignant by looking at a sonogram, that I have known women who believed their doctors when they were told this.  These women are dead now.

I have restored the breast cancer posts.  I'm not keeping quiet anymore.

Took some more pics on my afternoon walk today. 

Hats

Fabric

Boobs

Abnormally Attracted to Sin....

I just read in Here in My Head that Tori Amos is about to release a new CD  Abnormally Attracted to Sin. The release date is May 19th.  Tori is one of the few artists whose CD's  I purchase in the store...like we used to do in the old days.  Traditionally I buy it on the day of the release.  I didn't do this for her last CD, American Doll Posse. Not sure why...too busy I suppose. 

While I was ill I frequently listened to The Beekeepeer I would tune into the lyrics:

In your gown with your breathing mask on
Plugged into a heart machine
As if you ever needed one
I must see the Beekeeper
I must see if she'll keep her alive
Call Engine 49
I have come with my mustard seed

Chemotherapy was developed from nitrogen mustards. Also, Jesus said: if you have faith like a grain of mustard seed, you can say to this mountain, 'Move from here to there,' and it will move, and nothing will be impossible for you.

Yeah both Jesus and Tori come in handy when you get cancer...

btw...here is the track list for Abnormally Attracted to Sin.

• Give
• Welcome to England
• Strong Black Vine
• Flavor
• Not Dying Today
• Maybe California
• Curtain Call
• Fire to Your Plain
• Police Me
• That Guy
• Abnormally Attracted to Sin
• 500 Miles
• Mary Jane
• Starling
• Fast Horse
• Ophelia
• Lady in Blue

..You would never know...

I had my monthly shot yesterday, the one that puts my ovaries to sleep.  There are a few perks from this.  Mainly, no more monthly visitors and believe me when I tell you that I don't miss those.  Nope.  Not one bit.

 

Last year, one of my doctors (a man of course) told me that I might want to think about having my ovaries removed because "It's going to be a pain in the ass to come in once a month for that shot."  Oh really?  And the raging hormones, major surgery, mustache growth, weight gain, crying for no reason, permanently chopped up and scarred (as if I NEED MORE SCARS)... rendered permanently infertile...that would not be inconvenient at all...would it now?

(Did I mention raging hormones?)

I must point out that he was right.  It is a major pain in the ass, (and quite literally because that's where they give me the shot) to do this.  And it's time for me to just admit that I hate going back there.  I hate being weighed, I hate getting my blood pressure, I hate the smell of the doctor's office, I hate seeing bald people, I hate being reminded of all of it..and I wish I didn't have to go there at all, much less once a month.

But I go because I know that if it does get to be too much, I can just stop, and things go back to normal.  If I have my ovaries removed, I very well can't put them back in.  Can I?  Plus, the estrogen that my ovaries produce, just might fire up them cancer cells...and we wouldn't want that..would we?

It's strange because aside from these shots, I would never remember that I was so sick, that nearly two years ago I truly thought I was going to die.  Now I have a new job where nobody knows I was sick, and my hair is getting long, and still curly.  A few co-workers ask about the curly hair.  They ask if it's natural.  I tell them it is.  It's been well over a year, and is showing no signs of growing straight. 

Speaking of hair, I'm getting my second hair cut post chemo today. I get my hair done in a salon in Brighton Beach.  The first time I got my hair done there was at least six months before I got sick.  I had been keeping my hair fairly short but had decided to let it grow long so I didn't get a hair cut for awhile.  Then I got sick, started chemo and all my hair fell out.

Two months ago I walked into the same salon to schedule my first post chemo hair cut.  The Russian girl behind the desk (after first trying to speak to me in Russian) asks me if I want my hair done by Josef because he did my hair last time.  "Well is he good with curly hair?" I ask.  She looks at me incredulously "He's done your hair before." to which I replied, "Yes, but I have since had cancer, had chemo, lost all my hair, and it's curly now.  It wasn't curly before".

Awkward pause..

"He's good with curly hair." she tells me.