Happiness Is

Metamorphosis

Physical changes.  Emotional changes.  One is not easier or harder than the other.  But I’m going through both at the same time and the dials are turned nearly all the way up.

Physical update:  Radiation is done.  Skin is no longer peeling, instead freckling.  My left breast is smaller and higher than my right and I still don’t know if I care.  I have to wait 3 to 6 months to do anything anyway because the skin is still healing, but I don’t know if I have it in me to through surgery again.

Still getting Lupron shots once a month.  These keep my estrogen levels low so that if the cancer remains or comes back, estrogen is not present to feed it.  Low estrogen level puts me through menopause so I ride an emotional roller coaster.  My husband reminds me of this when I want to go to bed at 9pm because I hate the world and my therapist reminds me of this when I sit in her office and weep about my hair and wonder out loud why I am weeping about my hair.  So I have some very low days.  But they are matched with high ones and in the middle are beautifully ordinary days where nothing happens at all.  Those are my favorite. 

Hot Flash is now my middle name.  As such, my wardrobe consists strictly of layers – tank tops under shirts under sweaters topped with scarves and knit hats.  Because not only does my body temperature reach a boiling point once an hour, it also plunges to freezing within the same period of time giving bipolar a brand new meaning.

My doctor wrote me a prescription for a very mild dose of Effexor which is supposed to help mitigate hot flashes though it’s typically used to treat depression.  I took one pill a couple of months ago and turned into a zombie.  I decided I’d rather strip off my clothes every 60 minutes than be a zombie so I shelved the bottle with the 27 other meds I’ve been given this year.  When I opened the medicine cabinet and Willa saw my collection she said “Wow, mommy.  You have a lot of vitamins.”  I didn’t know she knew the word ‘vitamin.’

Sleeping is a joke.  Really quite comical.  When I get into bed I am freezing so I bundle up into the soft warm pajamas that Antha sent me for my mastectomy and shiver under the covers for a bit.  I want to sleep on my stomach to get comfortable but my breasts must still be healing inside because when I lay on them they grow angry fangs and seek revenge.  I have discovered that if I tuck a thick pillow under the lower half of my torso and place my head on another pillow, a little bit of space is created for my breasts to free fall.  Now I am comfortable and can fall asleep.  Until my first hot flash.  Then the covers come off, thrown (angrily?) onto my husband, and I roll onto my back, arms and legs splayed in a desperate search for cold air.  The hot flash passes, my body cools down, and I fall asleep again only to wake up an hour later from a dream that I am naked on an iceberg.  I am shivering because I have no covers on and my pajama top is pulled up to my chin.  The key throughout this process, repeated two or three times a night, is to not wake up.  For any level of consciousness invites a minimum two hours of fierce and rapid brain activity around completely mundane topics like frozen peas and Miley Cyrus.  It is then that I wish breast cancer had gone ahead and killed me.

And then there is the issue of my hair.  It is growing in, though it is still quite short, so I have what others are calling a Pixie Cut but since I did not actually cut my hair into this fashion, I am calling it a Pixie Grow.  Not to be confused with the cute pixie cuts that you might see laying obediently flat against the heads of Jennifer Lawrence and Pamela Anderson and Michelle Williams and who else?  No, my pixie wants to curl.  I have little hair flips happening all over but most notably above and behind my ears.  And these are not easily tamed with hair product.  Or even three or four hair products.  The hair at my forehead wants to curl up too so I can either wear it greased and plastered against my forehead or I can simply allow it to make a shelf.  A hair shelf.  My hair is winning and I am losing. When I look in the mirror I just say “Fuck it.”

Emotional update:  Dentist says I am grinding my teeth.  Holding tension in my jaw.  And sadly, even while consciously trying to relax, tension builds.  I spend more minutes out of everyday identifying and relaxing areas of tension than anything else.  But if I spend the next year doing this, I might just suddenly become a Buddhist and I would love to suddenly become a Buddhist without really knowing what one is.

When I’m not taking care of the kids and the house and my body and my mind, you can find me volunteering at the school.  Last week I started reading with other peoples’ kids during their lunch hour, to give them a little extra practice.  They are all sweet, even the ones who are completely out of control, and I don’t mind being called Lady Gaga for no discernible reason.  Then I’ll go down into the chaos of the lunch room to volunteer.  The Kindergarteners and 1^st graders have twenty minutes to sit down, get their lunch, eat their lunch, clean up their lunch, and get the hell out so the next 200 kids can come in.  The parent volunteers help them open yogurts and thermoses and BPA-free boxes and get them water and forks and remind them to sit down and stop running around and EAT!! even though it’s only 11am.  Then we sweep up entire grocery stores of food that have ended up on the floor and separate the trash into recycling, compost, and garbage.  We wipe down the tables and clean the floors before the next group of kids sits down.  And I cannot explain why it is my favorite part of the day.

 

I also cannot explain why I don’t like talking to my friends anymore.  I don’t return phone calls and I’ll respond to an email weeks after I’ve received it.  I find it very, very hard to discuss my current life with anyone who is not actually in my current life.  I also don’t like the idea of dragging people down with all that I continue to go through.  And then there is the anger and frustration that I have cancer and they don't.  So I am this now and they are that still and do we really have anything in common anymore? 

I don’t feel like the same person.  And I don’t look like her either.  So I am in metamorphosis.  And it’s really, really...uncomfortable.

Last Day

25 Days.  Finally.  Done.  

My radiation treatment drew to a close this afternoon during an all-too-appropriate rain storm in midtown Manhattan where scaffolding was my umbrella.  Similarly appropriate was the shot I took in my right butt cheek earlier in the morning, to start the day off right.  My skin is red and sensitive but not peeling.  Nurse Barbara tells me I will be tired all week and my skin will get worse before it gets better.  But doesn't everything?!  I don't care.  Not having to go north of 14th Street for another month is the greatest gift of all.

So I was sick in bed all weekend.  (What did you do?!)  I caught a virus a few weeks back that I have not been able to shake.  As my radiation technician put it, my "immune system has been a little busy."  Nurse Beth tells me it's going around and many of her patients have been worried that there is something terribly wrong with them because they get it, feel better, and then get it again.  As did I.  And the cure is to stay in bed for a week.  Who does that?!?!  It's not as fun as one would imagine.  It's not all movies and books and catching up on email and phone calls because my head hurts and I can't read or think and I hate all actors right now because I'm not one anymore.  

But my super-hero husband and his mom came to the rescue and I got two days in bed.  I was restored enough to get up this morning to make breakfast and lunches for the kids and get them off to school dressed, with teeth brushed, homework in their backpacks, and snack for 30 kids for Michael to carry.  After that, all I needed was two Advil and a taxi to get me uptown for my shot before I came back downtown for a nap.

Nurse Beth didn't recognize me, she's not the first, and I haven't been able to shrug these off yet.  Now that my hair has grown in a tiny bit, I am going out without my scarves on.  Some mom friends saw my head last week during a hot flash, saw that I have hair, and told me to stop wearing my mom's kerchief from 1976.  But now if I run into someone who is not expecting to see me, they don't seem to recognize me.  Or maybe they do but they are so overcome with disbelief and sadness that I had cancer and my thick long hair is now completely gone, not just hypothetically hiding under a piece of fabric?  Because I don't know for sure, I don't know whether to introduce myself or just play along or... what would some other options be?  Should I be wearing a name tag?

Also, as pathetic and superficial as it sounds, I really do miss my hair.  I know the little pixie cut is "cute," but I'm not sure how well I pull off cute.  I've never been a "cute" girl, my name is not Zooey, and I look ridiculous in knee-high socks.  I much prefer a black leather jacket over a black ensemble with some boots.  Add a pixie cut and sunglasses to hide behind, and I end up looking a little angry.  Not cute at all.  Plus, it's not even a hair cut.  It's hair growth.  Yuk.  My wig will be another option as soon as October decides to stop acting like mid-June.  But there's definitely no such thing as global warming.

But you know how you really know you are a cancer patient?  It's when you are on the radiation table, receiving your final treatment, and you find yourself dreaming about the kale salad you are going to eat for lunch.  Then, still on the table, you have a hot flash.  And then, still on the table, these lyrics come through on the speakers from the Cancer Center playlist:

"Cause you had a bad day 

You're taking one down

You sing a sad song just to turn it around..."

The nurse who comes in to take the sheet off your naked boob hears the end of the song and is mortified.  She apologizes on behalf of everyone but you tell her it's ok because it actually made you laugh, not cry.

And that's how you know you are a cancer patient.

BECAUSE LIFE IS NOT ALL RAINBOWS AND CUPCAKES!!!

(Right, Boehner?!)

Sick Again

And miserable. Too much crying and feeling sorry for myself. So I am playing this awesome game that my girl Katharine made for me.

When I get five in a row, I'm supposed to buy myself something nice. In the past twenty-four hours, I've bought out the fifth floor at Barney's. 

Two More Days of Radiation

Three through Eight

I just don't know how to put this eloquently - this is really fucking depressing.

Or is this just a mood swing from my menopause?  Or am I just tired from radiation?  Or is having cancer just depressing and there's no way around it?  Yes, I think that's it.  I think I just have to walk right on through.

So radiation.  Here's the deal.  After I change into a hospital gown, I take my arm out of the left side and lie on a table in front of a large machine. The technicians find the three tattoo marks on my chest and line up my torso while my left arm is raised above my head and my head is turned to the right, out of the line of fire. The machine is programmed specifically to my body and my scans and X-rays so it knows exactly where to aim so as to avoid my heart and lungs.  When I'm all aligned, the technicians leave the room, reminding me not to move a muscle, and they close behind them a huge vault door so they are not exposed.  To the radiation. That is aimed perilously close to my heart.  Then the machine is turned on and some sort of large disk moves around me into four or so different positions. A loud sound goes off for roughly two seconds or 24 seconds or 34 seconds and I don't feel a thing.  Except fear, but who really gives a shit.  Four minutes later the gang comes back in and I'm all done and they will see me tomorrow.  And the day after that and the day after that.  I should probably start bringing them bagels.

When I go to change, I notice in the mirror that my left breast is a little swollen so now I am beautifully aligned.  Today was the first day I noticed redness and I'm told that will only be getting worse but they gave me a calendula lotion that I apply every day and then some.  I leave The Cancer Center and the concierge who checks me in gives me a great big smile and a wave and says "See you tomorrow, sweetie!"  It is heartwarming and heartbreaking at the same time.  I walk home to get in a nice 45 minute cardiovascular and plug into some podcasts.  Sometimes I hear gut wrenching stories that remind me that I could have it worse.  A lot worse.  But in this particular frame of mind, that is not consoling.  

I have your emails to return and texts to return and phone calls to return and I might get to those but I might not.  I am so so sorry.  I'm not a very good friend right now.  I don't know what I am right now.

Two

My Grandad Seikaly died of a stroke at the age of 62. So did his father. So this morning when my dad woke up and said the room was spinning and then he felt dizzy for another hour, neither one of us felt like taking any chances.  We put the two girls in a cab with us and headed to the emergency room at St. Luke's.  Because hospitals don't scare me anymore but losing my dad does. 

A few hours, and many "Wash your hands!" later, we head across the street to my mother-in-law's apartment to eat lunch. Dad was discharged. The doctor determined he was not having a stroke.  We were both very, very happy to be wrong.  And the girls were very, very hungry.

Shortly after returning everybody home and giving dad a rest, Della and I made our way up to The Cancer Center for my second radiation session.  I don't need assistance, but it is very nice to have the company. It's also a nice 45 minute walk and I made up for my missed my therapy session this week by talking Della's ear off.  I was too worried about dad to think at all about radiation but maybe that's the way it should be. And then I got the news I've been waiting to hear for months (ok, years).  My sister Kate is having a girl.  I jump up and down on the sidewalk and scream and maybe even squeal, I don't remember.  But I leave the worry state and move over to elation.  Then I breathe an extra sigh of relief because there was a good chance my brother-in-law was going to kill me for prematurely shipping 27 boxes of girls clothes to his house.  But now I get a medal. 

I also see this on my way to The Cancer Center.  Not that I believe in signs or anything.

One

It is 8:30pm and I am exhausted, though it has less to do with my first day of radiation and much more to do with two visits I received from Willa in the middle of the night last night. Thankfully my dad is here.  She has been told to visit him tonight instead. 

And though I wouldn't describe it as enjoyable, lying on the radiation table today was not nearly as bad as a hundred other things I've done in the past six months.  It's all about lying as still as possible while your left arm, raised above your head, falls asleep and grows numb and large machines with green laser lights whir around you and lob radiation at your breast with modern precision. But I have a much greater appreciation for the technology since reading last night's chapter in The Emperor of All Maladies.  As fate would have it, it was about the history of radiation and how it came to be used to treat cancer. But, as with anything, there was a period of time before people discovered how dangerous exposure was. As there was a period of time before doctors understood the importance of sterile surgical tools.  Thankfully our doctors no longer carry their scalpels around in their pockets or pick them up and continue working with them after they've dropped into a pool of blood on the floor.  Yes, there are many, many things to be thankful for.

I am enjoying this book immensely, mostly for the constant reminders that we are the beneficiaries of all of the medical experiments and discoveries that came before us.  And also for the history lesson.  And also for finally understanding where the Pap comes from in Pap smear.  It might be a little morbid of me to be reading it now, but I just finished The End of Your Life Book Club, so I'm on a morbid streak. 

24 more treatments. 

Hot flashes also bring cold flashes and why are they called flashes when they last so damn long. 

But my hair is coming back and today I wore mascara. 

Cancer the Emperor

Because I have questions, so so so many questions, and because it is a Pulitzer Prize winner, I am about to crack open the book Emperor of All Maladies - A Biography of Cancer. But I am only able to do this because Michael graciously took the girls horse back riding and someone has to stay behind to wait for a furniture delivery. With perhaps an hour of complete quiet, save for me, the birds, and the insects, is this really the book to sit with?  I'm trying to be strong against its 470 pages and gruesome subject matter. But something compels me. So here I go. 

My Day With My Doctors

Tuesday.  Michael and I set out in the rain at 8am to make it to The Cancer Center by 8:30am for our appointment with M, the radiation oncologist.  We sit for an hour in a cold exam room while we wait for M, chatting casually at first, then checking our phones, then staring at each other, then checking the time, neither of us wanting to go to the bathroom should we miss the doctor and her ultimate recommendation that would set our fate.  At 9:30am, she walks in.

She is quick to tell us that the second PET scan showed scar tissue in the lymph nodes in my chest where we had previously seen inflammation.  Scar tissue tells us that there was cancer there, cancer that the chemo likely killed.  Nonetheless, since the cancer travelled there, it is also likely that it travelled to other areas nearby and, to be very safe, we should radiate.  We should radiate the nodes in the mid-section of my chest, in the clavicle, and we should radiate the chest wall.  She feels that the nodes in my armpit were well dissected during the surgery, so we will not radiate there.  This will mean we can cross the risk of lymph edema off the list.  And she says we can also take the risk to my heart off the list as she is confident, having seen the scan of the inside of my body, that they can avoid my heart entirely.  They will not, however, be able to avoid my lungs, though the radiation will only affect 10% of my left one.  She tells me this is nothing to worry about, even if I were an athele (which ironically Google is trying to auto-correct 'atheist'), but I believe her because my dear Aunt Mary Anne has been living with only one lung since she was 8 years old and she is still working full-time and going strong. 

The next thing we want to know about is the risk to the skin and new implant underneath.  M mentions that that area will shrivel and shrink a bit.  It is at this point that M takes a look at my new boobs and all hell breaks loose.

But I need to back up for one brief moment to say that on Saturday, while we were up in the country, I finally had a chance to look at myself in the mirror without bandages.  And I noticed that Lefty was slightly smaller than Righty and a little higher up to boot, giving the unfortunate effect of a lopsided chest, much to my chagrin.  "Well shit," I thought.  "How the hell did that happen?"  It took me a few minutes to prcoess the fact that if i were interested in fixing this, I'd probably have to go under again and this thought was simply too much to bear.  So I resolved to live with it.  A small price to pay for survivng cancer. "There it is," I said to myself.   "My chest for the next 20 years. Better get used to it."  I also resolved not to mention it to Michael just yet.  I could see him getting a little worked up. 

Back in the exam room with M, and her nurse practitioner, Olivier.  And Michael.  Everyone looking at my breasts.  

M is very frank, as she always is.  "This is not an optimal cosmetic outcome.  Your left side is going to shrink even more with radiation, making this difference even more pronounced.  You need to get this fixed before we begin radiation because once we radiate your skin, you will be low on options."  And suddenly we are talking about seeking out a second opinion plastic surgeon.  This week.  As in the week I am supposed to visit family.  As in the week the kids have been talking about every waking minute of every day.  And suddenly we are talking about perhaps another surgery.  At the end of August.  As in the family vacation week up in the country.  As in the only time of year I get to see my husband decompress.  And I would have to go under again.  And I would have to recover again.  The tears start to form way back in the back of my head.  They are not in my eyes yet, lest I look like a naked emotional basket case with breasts.  But they are looming back there.  Threatening to make their way to my forehead.  To burn my sinuses.  And well up in my eyes.  And fall out into the room.  And down onto the purple robe that is hanging wide open.

M is still talking. Now she is asking questions about what my plastic surgeon was thinking.  Now she is telling Olivier to get him on the phone so she can ask him herself.  She is, actually, taking quite good care of my interests, albeit a little dramatically.  She is adament that it is my right to have good looking breasts for the rest of my life.  She points out that I am an attractive woman with many years ahead of me and she doesn't think I should live the rest of my my life with uneven breasts.  "Yes ma'am, I agree with you," I say.  "But I am much more concerned right now with just staying alive and if these stupid fucking breasts are going to cause this much trouble then to hell with them."  She counters with the fact that I need to think ahead and since she is prolonging my life then maybe I should think about how I want to live that life.

We resolve to wait until that evening when she will hear back from my plastic surgeon with his opinion and answers.  Meanwhile, I am to start radiation on September 3rd. I will come in every day for 25 days for a dose of radiation beams that will shoot dangerously close to my heart.  To prepare for this, I need to walk down the hall and see another team of people in white coats.  This team of four or five ask me to lie down on a cot in front of their machine and open my gown.  They line up my torso with beams from their machine.  They ask me to lie very still and don't move a muscle when they send the cot into the machine and leave the room because it is too dangerous for them to be in there while I am scanned.  I somehow manage to lie perfectly still and keep my frayed nerves at bay.  I tell my nerves that they only have to be good for a few more minutes and then they will be free to express themselves.   The white lab coats come back in because now that I am perfectly positioned, they need to tattoo me with three dots.  They will use these dots to align my body perfectly to their radiation machine every day for 25 days.  I put my boobs away and we set the schedule.

The next stop is the nurses station where a sweet young nurse takes me through the skin care of radiation.  She gives me a bottle of lotion to take home.  Michael and I leave, step out into the rain, and search for some lunch.  Over a salad and an organic burger, I cry some more because I promised my nerves that they could. My dear husband comforts me and I begin the well-tread ritual of beating myself up for all the things I did that led us here to this spot.  Pointless and useless thoughts are my specialty.  When the food arrives, we eat mostly in silence. And then we head out in the rain for the next appointment.  We are seeing Dr. Ruth to discuss hormone therapy.  

Safely inside Dr. Ruth's office, we sit down and spot the crystal bowl filled with the dark chocolate Hershey's kisses and we don't take just one.  Michael makes a call, I check in with the kids and the sitters and the parents who have offered to help out.  I don't pick up a magazine. I don't look at the paper.  I stare at the rug and consider falling asleep.  And soon we are summoned to the exam room where I undress again.  Dr. Ruth comes in and looks at me and tells me I look great but she wants to know why my nose is beet red.  I tell her I've had a very emotional morning. She asks me what happened. I am able to get the full story out just before the tears fall again.

"Ok, let's take a look," she says and I open my gown.  "These look great," she says.  "They have healed very nicely.  Yes, the left is slightly smaller, but the right may still be swollen.  We're not going to worry about these right now, ok.  You've been through too much. Your body has been through too much.  There's no way I'm sending you back to the OR right now.  M is a fantastic doctor and very, very smart, but she is Italian so she is a little bit dramatic.  You don't have to worry about these right now. You are going to go on your vacation because you need it. You're a mess."

Ok, maybe she didn't actually say "You're a mess."  Maybe that's what I was saying to myself while she was saying something else, no doubt sweet and soothing.  She tells me to dress and meet her in her office. I empty her purple tissue box, blow my nose, put on my shirt, and Michael gives me another hug.  

In her office, we go through the next five to ten years of my life.  In a couple of months I will start taking a pill once day for five years.  It's a pill that keeps the estrogen in my breast tissue from binding with cancer cells.  Or something along those lines. And starting that afternoon, I will get a shot once a month for the next year, maybe two, that will lower my estrogen level and reduce even further the chances of this cancer coming back. My estrogen levels will be so low that my ovaries will shut down and I will experience menopause.  

Yes.  Ok. Whatever. Fine. Good. Great. Anything else?

I thank Dr. Ruth for calming me down and for extending my life.  I go back to the exam room so Nurse Beth can give me my first shot.  And guess where it goes.  Go ahead. You get one guess. That's right. In my butt.  You could not ask for a better ending. 

Radiation Rumination

Wide awake at 4am.   And what better way to spend the time than to muse over whether or not to radiate my chest.  Which is still an open question between me and my doctors.  It is also a decision that ultimately rests with me.  I hate being a grown-up.

Radiation is another tool in an arsenal of treatments to reduce the chances of this cancer returning, otherwise referred to as 'risk of recurrence'.  Yet another tool to cure cancer that also causes cancer, but whatever, I'm not complaining, I'm just pointing out bitter ironies.  Nothing can reduce your chances completely, but the goal is to take your number down into the single digits.  So, depending on who is looking at the numbers and how, my chances of recurrence today, following chemo but before radiation, is somewhere in the 10 percent range.  At one point I heard a 9, and since that is a single digit I have become very fond of the number nine.

By the way, the statistics the doctors use to determine ones chances of recurrence are based on all the cases of women with breast cancer who came before me.  They record how these women fared after their treatment, how long they lived, how many years passed before their cancer recurred, etc.  They put these women into studies to see how they did with certain chemo drugs and how long they lived after radiation compared to how long they lived without radiation.  I think about these gals everyday and I thank them.

Apparently, radiation would cut my chance of recurrence by about 1/3.  Wow, right?!  Except my chance of recurrence today, without having ungone radiation, is already very low.  Should we just call it 9?  If we do, then radiation would drop my number to a 6.  Not as impressive anymore, going from a nine to six.  Especially given all of the risks that come with radiation.  Radiation can cause cancer.  Radiation will damage the skin. Radiating the lymph nodes under my arm could cause lymphedema (permanent swelling of the arm).  There is a 10% chance that radiation could permanantly damage the implant which would then have to be removed but could not be replaced.  Most importantly, radiation beams could hit my heart, located under my new left breast, and will almost certainly hit parts of my lungs.  I am not in my late 70's.  I am in my late 30's and, should I be around for another 40 or 50 years, it would be nice to have my heart and lungs functioning well.  

The first radiation oncologist we visited (let's call her M, just for fun) says she is on the fence as to whether or not she would recommend radiation for me.  My surgeon told me she's known her for 20 years and she is a very opinionated doctor and is rarely on the fence about anything.  So all I can really glean from that is that she is trying to torture me.  We sought out a second opinion at Memorial Sloan and, lo and behold, a doctor from the radiation department recommends radiation.  Yes, obviously I don't really know what to do with that recommendation either - these are doctors who have just met me and perhaps they looked at my case file for 10 minutes?  20 if I wanted to be super generous.  So we're going back to see M tomorrow. And maybe we'll get closer to an answer.  And after we see her we'll stop by Dr. Ruth's office, my oncologist, so we can discuss hormone therapy and shutting down my ovaries for a year.  It's going to be a fun day.

But we did have a great weekend...

Surgery Tomorrow

Though still anemic, my numbers are up and I am set for implant surgery tomorrow. I have to be at the hospital at 8:15am. Surgery will start around 9:30 or 9:45. So that gives me a good hour and a half to think about all the things that could go wrong. The surgery itself takes about an hour and a half. Doc says most of that time is spent playing with my right boob to see which implant looks best. I'll be under again and he'll prop me up like a rag doll so he can step back and make sure everything is straight, even, symmetrical. At some point, I really need to learn when to stop asking questions.  There is, after all, a point where a girl can know too much. 

Hanging with my girls again today at Camp Mommy. 

Willa: Look, Mommy. She looks just like you."

Me: Pretty much. Oh and look, we both only have eight eyelashes. 

7/30/2013

Just a quick update.  I finally got the results of my last PET scan back.  No cancer anywhere.  And in the words of my oncologist, my PET scan was "perfect."  Now I do, for the record, hate that word.  But if my cancer doctor wants to use it to describe how un-cancerous I am, I will not stop her.

So now that we know I have no visible signs of cancer anywhere, we are still stuck with this question of whether or not to do radiation.  We are seeking out a second opinion next week over at Memorial Sloan Kettering, so we'll see where we are after that meeting.

I also got word late today that NYU Anesthesiology feels my red blood cell count is too low for surgery based on blood tests taken a couple of weeks ago.  I've been on iron supplements for those two weeks so I am hoping that I can get in and get another blood test with MD tomorrow.  Obviously I'm also hoping that my count is up.  Rescheduling surgery is not at the top of my list of things I would like to do.

And oh yes, it turns out my hot flashes are normal for coming off the chemo meds.  Cytoxan apparently shuts down the ovaries, so I am going through menopause or something like it at the moment.  Nurse Eileen suggested that I simply stick a leg out from under the covers at night to cool down.  She is a very busy lady so I didn't bother going into the sordid details of how blazing hot my body gets.  But if sticking a leg out is a solution for hot flashes, then my flashes are not hot.  They are nuclear.

To round out the situation, I am also experiencing some fun killer mood swings.  These are par for the course with menopause.  Er, chemo recovery.  What's happening again?!  I have moments when I'm depressed and a few of those moments have been particularly intense.  If you'd like to read a bit into that, please don't let me stop you.  But I also have moments of clarity when all the shit falls away and I can see that life is so so good because everything is only here and now.  Here.  Right here with my kids tucked into their beds and a roof over my head and a husband on his way home and a working computer.  And now.  Alive and breathing and recovering.  Here and now.  It is a nice little mantra.

Tapering

I took a nap at 1:30pm today when a dear, dear friend came over for a visit and told me to go lie down.  She stayed with the girls (Michael is in India) and I slept pretty hard for an hour.  Then I cleaned my kitchen.  Then we went to a Star Wars birthday party.  Then I came home and ordered sushi and took a shower with the kids and read them books and put them to bed and fell asleep with Willa at 9pm.  It's now 11pm.  Obviously I am not asleep.
The latest is that I am tapering off of Ativan.  I can't believe that that is the state of things, but nonetheless, here I am.  My nurse was on vacation last week which is when I started to connect the dots that maybe these hot flashes at night were more than just the crazy heat or faulty combinations of my blankets and nightgowns.  So I haven't officially received word from a trained professional that this early menopause experience might be the result of the pills.  But when I Googled "hot flashes" plus "cancer" plus "Ativan" plus "what the hell," I was able to self-diagnose.  Thankfully, a couple of weeks ago my GP mentioned to me that I should wean myself slowly and not go cold turkey.  So I cut my 1mg pill in half for two weeks and now I am taking half a pill every other night.  Hopefully in another two weeks, that will be the end of Ativan.

In addition to a raging fever every hour while I sleep, followed by a serious chill after I throw the covers and strip my clothes off, I have an engorged left breast.  These things in combination make getting a full night's sleep more or less impossible, so I don't even bother wishing for it anymore.  I consider it a victory when the covers can go off and on with very little drama, and when I only have to pee once.  But the breast is just a big pain in the ass now.  It is expanded to a decent size, nothing too ridiculous, but the expander is hard and bulky and completely immobile and sleeping with it feels like I'm snuggling up to a rock.  It comes out this Friday and will be replaced with a saline implant.  My right side will also get an implant, not to mention the shock of its life.

But what is all that compared to cancer, now really?

I Lost The Real Post

I just spent the past hour and a half writing to you, was about to post, and then I lost all of it.  My email was also hacked this morning so I am starting to think someone is seriously fucking with me.  Just wanted to let you know I am (generally) fine.  I have my implant surgery next Friday and I have hot flashes that wake me up at night as I taper off of Ativan.  Now I have to get to sleep and try not to be angry with a fucking piece of plastic.  I hope you're having a better night.

PET Scan #2

Another PET scan today.  Let's review.  Low-carb dinner the night before, no alcohol, nothing to eat after midnight, 20 ounces of water the day before, 20 ounces of water the morning of, no caffeine, no sugar, no coffee, no food in the morning.  Come in at 11am to The Cancer Center anxious and miserable, have a nurse prick your finger, stick a needle in your arm and leave it there for the next two hours.  Drink Barium (what is that?), lie in a room by yourself for 45 minutes, No Moving, No Texting, No Reading.  You can listen to music. 

NYU: Want us to turn on the radio?

Miserable Me: Do you want me to shoot myself?  I mean, what's worse?  This needle in my arm or the freakin radio?

Drink more Barium.  Willy the nurse injects you with something that comes out of a scary silver bottle that looks like a large bullet or a small bomb.  You are now radioactive.  Don't touch or get near your kids for 10 hours.  Cry about that.  Drink the last of the Barium.  Lie on this board.  Here's a blanket.  Put your arms up over your head.  Into the scanner you go.  See you in 20 minutes.  Try not to think about the cancer we might find.

I never really treat myself to anything because that's not how my brain works.  But right now I'm smoking a bowl and finishing off two different flavors of ice cream because it's been that kind of day.  

So the reason for the scan is that we are checking an area of my chest again where lymph nodes showed up inflammed in the last scan.  Chances are good that the inflammation was due to the surgery, but there is a small chance that the inflammation is an indication of cancer cells in those nodes.  If that is the case, then I will definitely need 3 to 5 weeks of daily radiation (not to be confused with being radioactive because they are acutally two separate things which makes no sense but it also makes no sense that they treat cancer with things that could give you cancer so just shake your head and move on) in September.  If the inflammation does not appear again on this latest scan, then radiation remains an open question.

But also I should say that I am 17 days out from my last chemo treatment and I am generally feeling pretty good.  I'm feeling my energy again, most of which I am happily allowing my children to drain from me every day.  Happy, happy, happy to do it.  Also I made it out of the house last night and had dinner (lo-carb, no alcohol) with Michael and some dear friends and it was the nicest bit of normalcy you ever did see.  I did have a little difficulty applying mascara to the seven lashes left on my lids, and then three minutes before I left the house I realized that in a certain light my maxi dress clearly dileneated one plump, round, nipplessless breast and one significantly smaller nippled breast.  I did not care enough to do anything about it, I only cared enough to feel slightly sorry for myself.  Vanity has taken a nice long vacation but Self-Pity still lingers. 

And dinner was lovely.  After greeting my friends at the bar and exchanging our hugs and kisses, I asked them how they were.  They had a lot to tell me - it's been a rough five months for them.  But they stopped themselves and said they didn't dare talk about their troubles to a woman with cancer.    "Oh, please," I begged.  "Please please please don't let me go home and cry myself to sleep thinking I'm the only one with problems.  Please tell me you have problems, too!"  They obliged and I was so grateful.

Four other friends came to my rescue today.  I planned on lunch with my friend L when I had blocked out of my mind that I would be radioactive after the PET scan.  She came over and brought bagel sandwiches piled high that we both devoured, but she also stayed and kept me company throughout the rest of the afternoon and kept me distracted me from the miserable fact that I couldn't hug or be in the same room as my children.  I'm also really grateful to my friend K, for many many reasons, but today for her podcast Tell the Bartender, which I listened to when there was No Moving, No Texting, No Reading for 45 minutes.  On her latest show, our friend M openly and honestly and hysterically shared the story of the first and only time that he tried to have sex with a woman.  I laughed uncontrollably but then got very nervous that I had ruined my scan because I was sure someone had also told me No Laughing.  

And then tonight, when we had one last miserable hour of trying to keep the kids away from me, when Clio was in tears because she couldn't hug her momma, my friend S had the kids over to her place to play with her bunny Pumpkin.  Oh yes, I'm also very grateful for Pumpkin.  

But I have to say this about miserable moments - they make the ordinary moments feel pretty stellar.

The Chemo Diaries. Is it over yet?

Today is the first day since the fourth treatment (last Monday) that I haven't wanted to off myself.  It's also the first day that I have felt like moving my fingers or any other body part so I thought I could get a blog post off now that the kids are in bed and now that I am in my nightgown smoking some weed.  I hope you are, too.

By the way, did you guys see this article in the Washington Post today?

http://www.washingtonpost.com/national/health-science/for-patients-like-me-marijuana-is-a-necessity/2013/07/08/a87bfc5e-daa8-11e2-9df4-895344c13c30_story.html

My mom sent it to me this morning and I was confused and angry for a hot second because I thought she had gone and published my diary in the newspaper.

Anyway, the past three or four days over here have been low, low, low, how low can you go.  Eating continues to be a nightmare.  Maybe a banana.  Maybe.  A cookie?  Ok, yes.  Dinners are a bowl of cereal and an Ativan.  It's a good thing I gained five pounds a couple of weeks ago.  Willa has now seen me so often sitting at a table with my head in my hands that tonight she asked me, innocently and earnestly "Why do you always do your head like that?"  

I woke up this morning and had to get ready relatively quickly to be on time for my 9:30am doctors appointment so I could wait 45 minutes in the waiting room.  First of all, doing anything quickly at this stage is not an easy task especially when it involves eating and then riding in a cab.  But also, an extra 45 minutes in the Cancer Center is enough to give you cancer as far as I'm concerned.  That's quite a lot of time to get all worked up thinking about dying and feeling sorry for yourself.  Then tears start to fall and I have to fight them back because technically my doctor COULD walk in at any minute even though she doesn't.  But when she does she could see me crying and fetch the social worker from the 10th floor again so I'd better hurry up and wipe these tears away and pretend I have seasonal allergies.  

Michael rubs my back to calm me down and after I think about how much I love him and how grateful I am to have him by my side I think about how much I would love a massage and how I should schedule one for every damn day for the rest of my life.  But then I wonder if they make massage tables with holes for breasts to go into because I still have a brick rock tissue expander in my left boob that would most certainly have to go somewhere were I to lie down on my stomach and have someone karate chop this tension out of my shoulders.

I made it home somehow and collapsed on the couch and Dad said I have to eat and I moaned and thought about what I could eat if I could eat anything.  And what I really wanted was a Duncan Hines cake that we used to make when we were little right out of the box when we thought that meant we were baking.  And on top, I would want that frosting that comes in the round little canister box that can also sit on a grocery shelf for 12 years and not go bad.  Given that I am the unlucky one in seven women who gets breast cancer for no apparent reason that anyone is able to share with me, those two food products are probably some of the very last items on a list of things that I should ever eat.  So I think again and scan my brain for a craving and I land on, none other than, a Green Dragon roll from Sushi West with extra ginger on the side.  What?  I order up.  Dad thinks I'm insane.

I buy $40 worth of Green Dragon rolls, extra ginger, seaweed salad, and miso soup.  When it arrives I set it out and I'm pretty confident that I still want to eat it, but I'll admit, I'm a little nervous about this craving.  This could go horribly, horribly wrong.  I eat.  I don't throw up so I eat some more.  Then I take a nap and set the alarm so I don't miss my therapy appointment and somewhere in the middle of therapy I realize I might, might, might be over the hump.   

The Chemo Diaries. Today Was Round 4.

Well the past two days were fun.  I had energy.  I felt normal.  I wasn't crying.  I moved furniture.  I cleaned a toilet.  I had a glimpse of who I really am and it felt promising.  But now I am back in bed.  Round 4 just started.

We are in the country.  There is fresh air here and lots of green grass and bunnies and turkeys and deer and other naturey things that I can't name because I've been living in New York City too long.  I have a garden here.  There are strawberries growing in it and we are eating them, even though I had to Google "What to Do with Fresh Picked Strawberries."  Did I mention that maybe I've been living in New York City too long?  We went down to our neighbors' house for dinner and I talked and laughed and I was me again.  With a scarf on my head and only one boob.  But still essentially me.

You know what else is here?  No honking.  And no drunk tourists outside my window.  The roads here are not being ripped up as part of a city-wide water-main-pipe installation that never ends.  There are a lot of birds and they are loud and sometimes I want to shoot them at 4 in the morning.  At all other times of the day I love the birds and I love their beautiful songs.  And I don't own a gun so don't worry, Rachel, the birds are safe.  There are 87 nests around the yard and soon we will have 87 x 5 baby birds.  

Shit.  That's going to be a lot of chirping.

Michael drove me into the city this morning for my last round of treatment and Mom met me there.  She did a great job of distracting me from the nightmare going into my arm.  I don't know how, but somehow we passed three hours together quickly and painlessly.  My chemo pal was a young Romanian woman I had met in chemo last month and we chatted for a while.  We talked about where we are in our treatment and shook our heads at how we got here.  She is 33.  No history of breast cancer in her family.  At the end of last year, she went to see her doctor about shooting pains in her chest.  The doctor did all kinds of tests to try figure out what it was, including a breast exam.  But since she doesn't have breast cancer in her family, the exam was one of those general quickies, feeling around for a Moon Pie rather than a Tic Tac.  The doctor couldn't determine what was causing her shooting pains so she thought it might just be a pulled muscle.  But over the next four months the pains did not go away so this gal started wondering if she had breast cancer, as you do when you have unexplained shooting pains around your boobs.  And she found a lump.  Good thing she did, too, because her cancer is HER2 positive which means it spreads very, very quickly and if you don't catch it in time, the odds are not in your favor.  Doctor now thinks the lump could have been sitting on or hitting a nerve and causing the shooting pains, because now that the lump is gone, the pains are gone.  And the whole breast is gone, too.

So why am I telling you all about the young Romanian woman?  To scare you, of course, into taking your breasts into your own hands, girls.  Here is my quick, unsolicited advice, young ladies: give yourself thorough exams every time you sit down to watch Mad Men.  Once a week, why the hell not, you have an hour with Don Draper, why wouldn't you do this?  And when you finish the season, quickly find another show with Jon Hamm in it that allows you ample time to get cozy with your breasts.  Don't rely solely on mammograms or solely on your doctor giving you a quick rub once a year at your annual.  Remember it's not safe to assume you won't get breast cancer just because there is no history in your family, or because you are only in your thirties, or because you eat well.  Cancer cares about that a little bit, but sometimes not at all.  

Oh, one last thing.  Almost every woman I talk to around my age who was diagnosed with breast cancer says that she found her lump after a particularly stressful period in her life.  I am OBVIOUSLY not a scientist or a doctor, but I ask questions and I am a listener and this is what I'm hearing.  And I wanted to just pass that onto you.  And OBVIOUSLY not everyone who goes through stress gets cancer, just like not everyone who smokes two packs of cigarettes a day for 40 years gets cancer which is a true story I just heard tonight and no, life is not fair.  But I still thought I would put it out there in case some of you reading this might be going through a particularly stressful period and you are not smoking enough weed or doing enough yoga or seeing a therapist.  I am JUST putting it out there.

There.  It's 9pm now.  I can take my pills and turn off the light.  I'm glad we had this talk.  I wasn't feeling so hot but you made me feel better.  The hit of weed and the second helping of Baked Ziti helped, 

Want to talk again tomorrow when the drugs kick in and I am feeling suicidal?  Great!  Talk to you tomorrow!!

The Chemo Diaries. It's Getting Ugly.

I tried.  I think I made a valiant effort.  I got up, put on clothes, wrapped a scarf around my head and went outside with my kids as though everything were normal.  But it didn't take.  It's 11:30am on a beautiful Sunday afternoon and I am back in my pajamas and back in bed.  But actually, this feels much better than faking it at the park in 80 degree weather in a scarf, sweat pants, and long sleeve shirt because I can't let the sun hit my skin.  I am so weak and so tired that I can barely type this.  I rest my arms between sentences and between paragraphs I take a nap.

So, yes, Round 3 is harder.  And I'm trying not to think about Round 4 because I'm afraid that during Round 4 I might actually die.  This week was atrocious.  I ate, slept, and cried as usual but it all seemed much more difficult somehow.  Though I had to eat, I didn't feel like eating and the thought of food was repulsive but I ate anyway.  Carbs mostly.  Bagels and cream cheese got me through in a pinch.  And when it was time to eat again, and I looked like I was on the verge of tears because I couldn't think of anything I wanted, Mom would ask if I'd like some ice cream because how could you turn down ice cream?  Chemo will turn down ice cream for you. 

And the crying - oh my lord.  Buckets and buckets of tears at all hours of the day for any and all reasons that make sense or don't.  At treatment, Nurse Beth asked me if I was depressed and I laughed her off and said of course I was depressed but I'm thinking now I should have taken her seriously because I think she would have called in some nice anti-psychotics for me.  Ok, next time.

But bedtime is the best part of the day.  I love it.  I can spend time snuggling and reading with my girls, take an Ativan, and then turn it all off.  For eight blissful hours it is all gone - the sadness, the sickness, the depression, the exhaustion, the need to eat, the need to drink, the need to eat again, the need to figure out what I'm going to eat next.  And then, of course, the morning comes and it is such a bummer.  The sun rises and says "Come on!  Get up with me!  It's going to be such a great day!  Just think of all we can do!"

I want to punch morning in the face.

The Chemo Diaries. Good News.

You may not have heard the fireworks and cheering that went off in my house yesterday because they may have been mixed with the sounds of nausea and crying, but we had some good news yesterday.  Dr. Ruth took the second set of chemo drugs, 12 weeks of Taxol, off the table for me.  So my last round of chemo is July 1st.  The news was almost enough to counteract the poison/medicine that dripped through my veins while we met and discussed, though not quite.

Also, at 9:30am yesterday morning, Michael and I hit our old haunt, the NYU Cancer Center.  We had a meeting with a radiation onclogist, a doctor who will help us figure out a course of treatment for radiation.  In my case, as with the chemo, radiation is another preventative measure.  I do not need to undergo any raditation for any cancer cells that we know are there, because we don't in fact know that any cancer cells are still there.  But, as with the chemo, we take this course in the event that cancer cells might be there and we don't know about them.  There could be cancer cells in the skin of my breast or in the surrounding chest wall or in the lymph nodes by my collarbone or my sternum.  So both radiation and chemo reduce the chance of this cancer coming back.

Having said that, my chances of recurrence are already very low.  And there are side effects to radiation.  Because the cancer was in my left breast, which is above my heart, the radiation will come close to the heart.  Their methods of laying a woman on her stomach so that the breast falls forward helps to avoid the heart and lung mostly, but still there is a risk to radiation hitting the heart and lung.  There is also a small risk that the radiation creates a malignant tumor.  And there is the risk of lymphedema, lifelong swelling of my left arm.  So the ball is in our court as to whether or not I go through 3 weeks, every day, of radiation starting in September as a preventative measure.

Between the end of chemo and the start of radiation is when I would go under the knife again for surgery.  This time, for the breast reconstruction.  Tentatively scheduled for Friday, August 2nd.  It might go without saying that with everything else going on, the new boobs have been a blip on my radar screen.  But it is within the realm of possilbility that I will find some happiness there at some point.

As for today, I am lethargic, eating a lot, drinking a lot, and resting a lot.  Mom is here, Dad comes back next week.  I have thank you cards to send and health forms to send off for the kids and emails to respond to and the like, but today is a resting day.  

I love you guys!  I cannot thank you enough for all the love you send.  I feel it and swallow it every day and it is nourishment for my soul.  Thank you!

T.C.D. Round 3 is Tomorrow.

Hi.  It's me.  I'm here.

Tomorrow is Chemo Punch Round 3.  I don't want to go.  Like a kid who doesn't want to go to school because he knows he's going to get the shit kicked out of him.  But he has to go, right?  I mean, he could skip school, but he would only be delaying the inevitable.  So what does he do?  (No, he does not buy a gun.  He is a good kid).  He lies awake at night while his mind battles with a strong and perfectly normal human desire to avoid a beating, and his very sad reality.  And reality always wins.  Fucker.

Now I don't know if this kid has Ativan at his disposal, but if he did he could pop one before bed and that would at least quiet his mind and let him sleep.  I try not to pill-pop but my sleepless nights were getting out of control so last night I took an Ativan before bed and I actually SLEPT!!!  So now it's kind of a no-brainer and that's what I'll be doing for a while.  Because even getting stoned alone in my bathroom before bed was only making me wide awake and stoned.  And it's a little frustrating to be lying in bed at 2 in the morning making up really good songs about your kids to the tune of "Jesus Loves Me" only to forget them entirely the next morning.  Why am I singing "Jesus Loves Me?"  Because it's a really easy song to rhyme words in and also my athiest/agnostic parents sent me to pre-school at a Christian Baptist Church (?!?!?!?!?!?!?!) and I've been reviewing my entire life since I got cancer because that's what you do when you can't sleep.  And when you're stoned.  And when you have cancer.

So I'm going to go to sleep in a minute but I did want to tell you that I looked at my head finally.  It did not take me a full three weeks, to my surprise.  But I only looked at it for a second.  And then a day later for a couple of seconds.  And then a few days later a couple seconds more.  The girls asked me for a few days in a row if they could see it and I finally relented over the weekend.  Willa squealed and Clio said "Aw, pretty!"  I almost bought her a pony.  Still, I always wear it covered, either with a scarf or a loose cap.  Believe it or not, it gets very cold, a bare naked head.  I haven't missed my hair, which was a big fat pain in the ass anyway.  The scarf and drop earring collection is growing and I'm working on my new look, but it's slow going because I don't really have the time, energy, or desire to be beautiful right now.  So instead I am a nice healthy mix of Dopey of the Seven Dwarves and a Hasidic Jewish woman.  But as we say on Planet Cancer, it could be a lot worse.