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.

T.C.D. An Up Day.

I'm up.  Figuratively and literally.  It's 10 o'clock and I am up eating a ham sandwich because I have to, but I am also up in spirits and energy.  I knew something was afoot last night as I lay in bed WIDE AWAKE until 2:30am when it finally dawned on me to get out of bed and rustle up some drugs.  After  finally finding something with the label "May Cause Drowsiness" on it, I lay awake for only about a half hour more finishing up my thoughts on how to cure cancer, whether it would be ok to wear sweatpants everyday for the next four months, and strategizing how I might be able to get out of the  rest of chemo.  The Ativan finally kicked in and I found some sleep.

I was up at seven to be with the kids before they were off to school.  I could sleep in in the mornings, but I am desperate to be with them.  Even if it is only for an hour while they eat their oatmeal and I brush their hair.  When they are out the door I fight back tears and often lose.  Right now, I want more than anything to be by their side, to squeeze and hug them and cup their cheeks in my hands and lift them up off the ground and kiss them all over.  A far cry from where I was a year ago when I was hurrying them out the door so I could hurry to work and find that there were never enough hours in the day or enough energy in my body to give 100% to ten different things.

This morning I climbed back in bed for a nap and my only thought was that I wanted enough energy to make it to Pick-Up at the end of the day, which I did.  It felt like an incredible achievement that I was dressed with a scarf on my head and a little make-up on my face with enough energy to eat a sushi lunch with Dad and Lani and make it to down to the school to get the girls.  I also had a visit with my girl Katharine (she snapped the pic of me and Willa) and I squeezed the hell out of her because I missed her so much.  Well, so, these are my achievements now. 

At some point I would also like to accomplish a look in the mirror at my uncovered head, though I have a feeling I might still be a few weeks out from that one.  With a few random hairs left in random places on an otherwise pale bald head, I am quite certain that I am doing myself a HUGE favor when I chant "not looking not looking not looking" as I step out of the shower.  Because when I step out of the shower (in my dimly lit bathroom), I am not drying myself off or putting my pajamas on or finding my robe.  The only thing I am doing is Not Looking at myself in the mirror until I have some damn piece of fabric on my head.  

Like I said, I have a ways to go.

The Chemo Diaries. Cry it out.

It has been threatening to rain all day.  Overcast and slightly morose, just like me.  And the kids were out of school.  Willa and I painted for a bit and then they hit the park while I napped.  And ate.  And then napped again.  And then ate.  And then went for a walk, ate, napped, ate, and you get the picture. I was able to make dinner!  It's the little things.

I am also very emotional today.  And when I say that I just mean that I could really cry about anything.  For no reason at all and every reason of course.

Willa wants to know which arm is the arm she can hug.  She knows there is one that is off-limits to squeezes, but she can't rememember how to distinguish.  So her method is to look down my shirt for the booby that is still there, the booby with no cancer, and then she will squeeze that arm.  She does, in fact, know what booby and which arm, but she likes to pull my shirt down anyway and delight in the fact that she is seeing my boob.  I wish I were four.

Clio is my amazing little big girl, skateboarding, and handstanding, and teaching her sister how to ride her bike without training wheels.  And she is so tough, and so brave.  Still, I wish I could spare them both all of this crap.  I wish they didn't have to see me lose my hair or be too tired to take them to the park or to school.  And yet I have no desire to shield them either.  I want them to know that shitty things can happen but we can all get through it.  And this isn't even the shittiest thing that could happen, really, so how lucky are we?  We are so lucky.  So very, very lucky.

I took a shower tonight and noticed for the first time that my hair was falling out, just the little pieces from my buzz cut, lining my palms.  As if I hadn't known it was coming, as though I hadn't prepared myself for it for weeks, I froze.  Like a deer in headlights, completely unsure of what to do next.  What...how...exactly is this going to go down?  Am I...should I...put a cap on?  Do I need to go cut my hair again?  But then again, won't this will pass just like everything else?

As soon as I finished crying about that, I got an incredible email from my incredible brother Matt and his incredible wife Lisa.  (See below).  And then I cried for twenty minutes more.  A cleanse.  Just like the rain.  But I am running out of kleenex.

The Chemo Diaries. Punch #2

Wednesday, June 5th:
So very very tired today. I made it to physical therapy this morning. And I went one stop further on the subway to pick out a paint color for the house. But that's all I have in me. So good thing for all of us I wrote this last night (and my friend Rachel helped out):

Tuesday, June 4th: I got into the big blue chair for Chemo Round 2 a few minutes late and then I had to stay a few minutes longer to talk to Dr. Ruth about my Oncotype scores, so it was a very long day.  I was able to get dinner in the oven before I pooped out on the couch and closed my eyes and slept until I needed to smoke.

Oncotype: This is a genomic test that scores your cancer lumps on a scale of 1 to 100.  Low scores tell you that the risk of recurrence is very low.  My lumps scored 3 and 5.  Very low and very good news.  Dr. Ruth wants to reevaluate the 10 rounds of Taxol that I am scheduled to get after these four sessions of drugs that I'm undergoing now.  She wants to go back and read some studies that were done of patients who received Taxol after chemo to determine if the treatment had any effect for my age and category.  She will also look at extending my hormone treatment after radiation which would keep my estrogen levels low for, possibly, longer that the original five years we talked about.  She thinks that may be that the most effective way to prevent the cancer from coming back, given that is is highly estrogen positive.

My friend Rachel accompanied me to chemo.  Bless her big bad heart, she did not frighten at the site of me all hooked up to drip bags, one after the other, my eyes drooping as we chatted into the second hour.  She peeled my hard boiled eggs and threw away my trash and fetched me purple chocolates.  She showed me pictures of animals and introduced me to Crabby Cat. We needed some bonding time before she moves to LA with her seriously sweet husband, Jay. A chemo clinic provides the perfect place, don't you agree?

Rachel describes it this way:

I'm not sure if it was weird of me to be happy to go with my friend to her chemo appointment but I was.  I was happy to hold her hand, distract her while the needles came, maybe get a giggle here and there.  But I was really happy to have her all to myself for a few hours.  Because that is how long chemo is.  Did you know that?  It's hours.  Hours of Lauren sitting in a chair looking at me looking at her.   And then the half hour waiting to be seen.  WOO-HOO!  Lots and lots of alone time with Lauren.  Do I want my friend to be going through this?  Of course not.  But am I happy that I am spending time with her?  Positively thrilled.  Because friends don't have access like family does.  Her family has swooped in like the support system they are and she hasn't slacked at all in Mommy duties.  She's also knocking out cancer, so her free time is a little few and far between.  For a friend waiting and wanting to just be with her, we have to be patient. 

When Lauren told me that she could bring someone to chemo with her, I told her that I have to go with her and I have to go with her soon and it has to be me and she has no choice in the matter.  She doesn't like me more than any of you or love me more than any of you but I am moving to the left coast soon.  Her having me go with her had a lot to do with time being of the essence!  Fortunately, she obliged.

You'd think seeing your friend hooked up to tubes, chewing ice so the chemicals don't cause sores from the inside out and walking to the bathroom with an IV machine, would sadden you in some way.  Maybe it should have.  But it didn't.  Lauren had her purdy scarf around her newly shaven head, lovely dangling earrings that hit her shoulders, her eyes done just so.  Same ol' Lauren.  A slight wince only came when the horse syringe came out.  I call it a horse syringe because it's massively massive.  I don't care what anyone says.  That syringe is used for horses!  I thought they were kidding.  Like it was a prop being used for a gag.  But no.  That's one of the treatments.  And that was the only wince she gave.  The rest of the time you would have thought we were at a cozy coffee shop.  Just two good friends chatting and laughing.  And eating hard boiled eggs.  Nature's superfood, you know.

Towards the end of the appointment, Lauren talked about her fear that she was doing the wrong thing.  Maybe she should have waited to be so aggressive with treatment, maybe she should have gone a different way.  She told me about her good ol' nickname as a little girl - "Delicate Flower".  Her parents teased her with this because every bruise she would feel, every hard landing would end with a sprain or a cut, any little change in her body she would totally be aware of.  So, how was she going to handle this?  I thought about all the shows of Fishbowl that she would take charge of, of how she ordered me to get a Neti pot and then repeated several times how it works because I just didn't get it.  I thought about all of the problems I went to her with that she was able to separate the forest from the trees for me.  I thought about how, as hokey as this sounds, I always feel safe when I am around her.  Delicate Flower?  Um, no.  Pretty far from it.  Her figure is slight, sure, but doesn't fortitude count for something?  It must.  It has to.  It's so much of what she is.  Anyhoo, maybe my opinion doesn't matter all that much but I told her I thought she was doing the right thing.  So there.

When the appointment was over, we got up, we hugged and I don't why this happened, but I almost started crying.  I don't remember what she said or what I said but I almost started crying.  Your heart ever swell with love for someone and in a moment you realize how much they really mean to you?  Kind of like what happens in movies but it's in real life?  I think that was what happened.  I don't want her to go through this.  I don't want her to worry about this.  I love Lauren B'Doren.  And I suppose it got me choked up a bit.  I thought I was going to cry but I didn't.  I'm glad I didn't.  It wasn't the way I wanted to end our good time at the faux coffee shop.....with the horse syringe.

Lauren has/had cancer.  Tears will always be right there for all of us.  But they don't always have to rear their droplets.  Hugs, laughs, poking fun, pulling chains, busting chops - there is a want and a need for these things.  And I would even say, a bigger want than anything else.  I could've cried but didn't.  We had too good of a time.  It was a happy time.  Plus, I mean, so I cry and then what?  She starts calling me her "Delicate Flower"? 

I once knew a girl named Lauren,

She thought her cancer might go tourin',

So she got a big shot,

A delicate flower she's not,

Her chemo appointments are far from borin'."

Thanks again, Rachel!  Anytime you want to switch places with me, I am ready, girlfriend!!

A crazy thing happened at the end of last week.  My body did not register exhaustion.  Or sleepiness.  Or anything resembling tiredness.  I don't have any scientific evidence for this, but I think something was tampering with my sleepy gland and blocking its ability to communicate with me.  And it was strange.  So it was the very first question I had for Nurse Beth this week: "Have any of your patients ever developed super human strength towards the end of their second week of chemo and failed to get tired?"  As you can imagine, Beth's response was a mix of professionalism and laughter.  "No.  But this is how you are experiencing chemo."

"It could also be an indication." I continued, "that I am about to get my period.  On most cycles, about three or four days before I get my period, I experience a serious crack-cocaine-like burst of energy and I can't sleep.  It doesn't usually last for five days, though.  So what do you think is going on?"

Beth's answer was smart, as always. First, after saying she doesn't actually know the answer, she told me that 21st century women often tend to push through and don't allow themselves to rest.  (You're kidding!!)  For example, forty years ago, she said, when she was growing up, there was no Advil.  (I cannot even imagine such a world).  So what did women do when they got their period?  They stayed home from school and work and laid down with a heating pad on their uterus. And they rested.  They did not take two Advil (three) and head to work, as we all do today.  Our generation will push through, and of course, it is not just women, is it? I know plenty of men who do the same.

During my first year in New York, when I was temping at an investment bank, one of the young analysts ignored signs that he was getting sick.  For a few days, he kept coming into the office, clearly sick and clearly green.  When he finally passed out, he was rushed to the hospital and then a couple of days later he died.  Beth also told me about a patient of hers who went to work all through her chemo treatment.  Every day.  Pushed through.  And at the end of her treatment, she took a leave of absence.  It had all been too much.  

She told me these stories to remind me to sleep, to take care of myself at all costs right now, and forever.  Even if I wasn't tired, I had to get in bed.  I had to rest.  I should not try to push through, as tempting as it may seem.  I promised her I would.  Even if I wasn't tired.

Oh, I almost forgot.  She reminded me to smoke some weed.

So it may not seem so bat shit crazy when I tell you that last night, when I finally got in bed after a very long day of chemo, I was sooooo soooo soooooo happy to be experiencing exhaustion.  I think I may have fist pumped the air once or twice before crashing.  I was so excited to be tired.  I was so excited to be sleeping.  And I can not believe I am writing that sentence.  I will eat these words, I am sure.