The Chemo Diaries. Week 2. Food and Energy.

Week 2: Lots and lots and lots of eating.  As in, every two hours.  As in, I'm not hungry.  

But that is what made it a successful week.  That and my dad.  Dad arrived on Monday and we both got to work napping and eating.  Just kidding.  Dad cooked and made me smoothies and walked me to therapy and walked me to my other therapy.  He babysat Wednesday night while Michael and I went on our first date since February.  And tonight he jumped in the pool in his shorts because Clio begged him to go swimming with her and he forgot his bathing suit.  He is Super Dad and Super Granddad and I don't think we've spent time like this together since I was 6 and he is amazing.  

Tuesday night I found myself lying in bed unable to fall asleep, a funny feeling stirring up somewhere in my stomach region.  (I don't like body parts and thinking about my insides but I know sometimes people say your stomach isn't really your stomach and what the fuck).  Anyway, it was 11pm but I knew my body was telling me to eat.  I tiptoed to the kitchen and found leftover mac and cheese and some chicken from fajitas in the fridge.  No veggies in sight so I warmed up my white on white and sat down to eat.  It occured to me that I would never ever do this in my other life.  I would have never felt the need to get out of bed and warm up some food at 11pm, and particularly not a large bowl of macaroni and cheese with chicken.  It was so foreign to me that I was a tiny bit scared that something terrible was going to happen to me.  Like...um...cancer.  Dad heard me me clanging around so he came out and had a sympathy snack with me and then we both went to bed and wished each other luck in falling asleep.  The mac n cheese with chicken was a game changer.  My body calmed down, I fell asleep, and the next morning I was a new woman. 

I bought some chemo scarves from some gals on Etsy who make them.  One of them, Pat from Kentucky, emailed me to see what my favorite color was because she wanted to throw in a free Daisy Pin.  Now we chat.  I learned through Pat about a gal named Heather who was 29 when she was diagnosed.  She started Fighting Fancy, a non-profit that sends out "goodie bags" to breast cancer patients under 40.  While I was browsing through her blog I learned about Kirsten (http://abumpandalump.blogspot.com/) who found out she was pregnant and two months later found out she had cancer.  Then I started to have heart palpitations and then I had to get off the internet.

My energy grew noticeably starting Wednesday to the point where, oddly, at night I was having trouble sleeping.  The irony.  Last week I was crying for energy and this week I am lying in bed WIDE awake at midnight wondering if I accidentally took some steroids.  Today, Friday, I walked the kids to school and kissed and hugged my friends and told them I felt great and they told me I looked great so I kissed them some more.  Dad and I took a morning walk, made Grandmom's cabbage rolls, and packed for a weekend in the country.  I did not take a nap nor did I feel like taking a nap!!  Dad finished the Bone Marrow broth he'd been making for three days.  Not really, but sometimes 24 hours can seem like three days, right?  And then we drove upstate.  

Which is where I am now.   Wondering if I might get two days of feeling like a Normal.  I think I might and I think I might like it a lot.  A lot a lot.  Monday I go get punched.

The Chemo Diaries. Week 1 Debrief.

So that was Week 1 of chemo.  Not terrible, but also not easy.  And apparently it actually gets worse.  My nurse described it to me as getting punched.  The first time you get punched, you can take the hit.  (Really?!)  But the third and fourth time you get punched it is harder to recover.  And she will be punching me again next Monday.

Mornings seem to be the hardest.  I wake up and try to tend to the kids for their own sense of normalcy and my own, but then I am quickly winded.  Chemo laughs at me and says "Where do you think you're going?" and throws me back in bed where I don't fully sleep, I half-sleep and semi-meditate so I don't waste precious energy being angry at my weak and worthless body.  It's also a dangerous time to think, so I try to avoid that, too.  Wouldn't it be stupid to think about all of the things I could be doing if I didn't have cancer?  Or worse yet, to think about the fact that I might not even have cancer anymore but I still need to poison my body just in case?  But it would be really pointless to think about how the hell I got cancer in the first place, right?  I mean, that would be like not using your brain at all.  So instead, I think about my life one year from now, with a full head of hair and a bra full of breasts.

No I don't.  I can't manage it.  I can barely think about the afternoon.

This weekend we were in the country - Michael, the kids, and my sister Jenny.  And we learned two very important things.  We learned that I have to eat every two hours or the shit hits the fan.  And we also learned that Willa's favorite color is meat.

I should also mention that I had my head shaved last week so, in addition to getting used to my new pathetic body, I am also getting used to the loss of yet another body part.  Contrary to earlier rumination, I think it can safely be said that shaving your head is not, in fact, fun.  Buying a wig is somewhat fun.  But I don't think it measurably outweighs the fact that you have just cut off all of your hair.  Which is what I did last Friday at a wig salon in midtown with the moral support of my sister Kate.  Thank god for sisters.  I don't know how she did it, but she watched the whole thing.  She watched while Edward ponytailed my hair into 15-20 sections.  She watched as he cut each of them off (so we could donate them to Locks of Love).  And then she watched as the worst hair cut you could possibly imagine (I'm just guessing here, because I didn't actually look) turned into, roughly, Natalie Portman's shaved head.  Or at least that's how Kate described it to family members in one of her text updates.  I don't think I look like Natalie Portman.  I think I look like my brother Danny.  Which is to say, very handsome but with one breast.

It took me a couple of days, but I was finally able to look at myself in the mirror and that in itself was a milestone.  It took my kids about the same amount of time, though every now and then they will be blunt and tell me I should go put my wig on.  Oh yes, I did buy a wig, thinking I would need or want to find what other cancer gals describe as their "dignity."  But I am still searching and have not yet found my dignity, though I will let you know when I do.  The wig is super cute, but an itchy pain in the ass.  And among my other alopecia accessories are a black cap that I can wear to bed or during the day to keep my head warm or to spare my kids my shaved head.  I have a little hair piece that I can wear under a scarf or a hat which if you saw on its own would give you nightmares for weeks.  And I have a box of scarves that I am playing with.  I am also at the point where, after 37 years, I am thinking I will get my ears pierced.  Because wouldn't a chemo scarf look so much better with some dangly earrings?

Surgery on my breast not only seems like a distant memory, it seems like the easy part.  I have almost completely forgotten about my tissue expander, the big red scar on my chest, and the corded veins in my left arm.  You see, if a mastectomy is a coyote in the hills of LA hunting down and eating your poodle in broad daylight, then chemo is the fire breathing dragon that sits at the top of that hill and eats your children and then burns down your city.  

I will come up with a better metaphor for my next blog post.

The Chemo Diaries. Day Something. I Don't Know What Day it Is.

Remember Baby Brain?  The cute little lapse in memory we experienced as expectant mothers, somehow ignited by the cute little lump growing inside of us?  Today I was introduced to Chemo Brain, decidedly less cute.  Decidedly more annoying because there's not a baby in my tummy to rub.  It's really just another way that cancer says "fuck you" when you're trying to act like you're normal, even though you know you're not anymore so you should probably stop pretending all together and get on with it.

Where was I?  Kate and I were trying to plan our day tomorrow which will involve watching Willa perform her The Dance-A-Thon dances, cabbing it up to midtown to cut off my hair, donate it to Locks of Love, and trim my wig in an attempt to make it cute and bearable.  Then cabbing it back down to Dance-A-Thon to try to catch the end of Clio's dances.  Carolina will fill in for us while we're gone.  Dance-A-Thon happens once a year at PS3 and it's not at all mandatory that parents attend, but if you're a parent on chemo you try your best to give your kids some semblance of normalcy.  Because everything else sucks for them, showing up to watch them do the chicken dance and the Macarena to raise money for a school in Guatemala is not that hard in the greater scheme of things.  The hard part is when they see my short ass wig and cry.  That will be the hard part.  I will probably not bother wearing mascara tomorrow.  I hate it when it runs all over my cheeks.

I had to ask Kate six or seven times what time this started and what time that started and she was very patient with me and kind of laughed because it is the antithesis of me.  I hold information like a steel trap and I'm on top of things to a fault.  To witness me do the opposite must be pretty entertaining, especially for my little sister.  I did make it to the Final Ballet and Tap Dance Class Performance for Willa this afternoon, with a phone on 20% battery that was supposed to film the whole thing for Daddy.  I got most of it.  Chemo brain got the rest.

I deposited two checks that have been sitting around taking up space and driving me crazy, but that was comical.  Have you ever shroomed and tried to deposit checks?  I went in to the drugstore to buy Ziploc freezer bags and walked past the wall of assorted plastic bags three times.  Have you ever tripped on acid and tried to buy freezer bags?

I am not stoned, shrooming, or tripping on acid, but I don't have to be.  I'm on chemo.

Last night, Michael gave me shot in my belly.  A white cell booster that is supposed to keep my white blood cells from going too low and help me come out of the trough a tad more quickly.  Side effects?  Oh yes, there are always side effects.  My bones could start to feel like they are going to explode within 24 hours or so.  For that I was prescribed Advil.  And only 2.  WTF?!?!

I'm also on every anti-nausea medicine one could think to prescribe.  Well, except for two which are reserves.  I told Beth I could not imagine needing the reserves after all that I would already be on.  She gently reminded me of all the women who came before me, 20 years ago, for whom the chemo and the side effects were so bad that they could not finish their treatment.  So I am the lucky one.  I know.  But not as lucky as the women 20 years from now, who, fingers crossed, will not have to endure 14 rounds of poison coursing through their bodies in the hopes that some lingering cancer cells are killed. My friend Fran calls it insurance against recurrence and I can live with that.  Because I have to live with that, don't I?  I am not a hero.  I am not brave.  I am only doing what I have to do to be here for my kids.  And to watch Hillary get elected.

Bright spot?  My first breast expansion was last Friday.  How quickly we forget the breast reconstruction.  Thankfully Angelina the Mega Media Machine is here to flash her reconstructed face on every tabloid to remind us that breast cancer does not have to be breast cancer, it can simply be two beautiful new breasts.  And then be called a hero for it.  (I want to like Angelina, but today she is not my favorite).  Visiting my plastic surgeon is a little like going to see Larry David in a white lab coat but I can live with that when at the end of our 7 1/2  minute appointment I am bouncing off the table saying "Alright, not so bad.  At least I'm getting some boobs.  Things could be worse.  Things could be a lot worse."

The Chemo Diaries. Day 1 Part 2.

9:30pm.  I am stoned.  And very very tired.  But I thought you should know that the timeline I was given, of feeling the effects in three days for three days, likely will not apply here.  After Michael dropped me off after lunch, I hit the couch.  I was able to get two calls off - one to Mom and one to Dad.  I rested on and off.  I drank liquids way more often than I wanted to.  The girls came home and I helped make dinner.  But by 7:30pm, I was lying on my side, fighting off a little nausea and getting very emotional.  Michael walked in and hugged me but quickly fetched me some weed.  I cried and cried and cried.  I couldn't help it.  I smoked while I cried and soon felt better.  Stoned and better.  And finally hungry.  I ate a piece of toast and a bowl of the soup that my friend Kate made for me today.   She is an angel and I don't know how to properly thank her.

I am not thinking about tomorrow, or even about tonight.  I am only thinking about this very minute that I am in because that is literally all I can do.  

Thank you for giving me a reason to write.  It is saving me.

The Chemo Diaries. Day 1 Part 1

My appointment for my first round of chemo was this morning at 9:30am.  (Big hugs to my sister Kate who is here taking the girls to school, picking them up, taking Clio to the park on her new skateboard, and generally creating endless distractions for the kids.  JJ arrives Friday to take over for the continuation of Aunts Trump Mommy).

I'm going to The Women's Wellness Center for my treatments, not the hospital.  The office is designed to look like a small and intimate living room, one with strategically placed suggestions to relax: a minimalist print of a woman in a white dress, a framed print of a rose, and hand soap in the bathrooms in bottles labeled "Stress Relief."  In big letters.  In case you weren't catching the subtler clues.  Beth, my onco nurse, comes to get me and she says "hi" in a way that tells me she is expecting me to be a hot mess.  "How are you?" she asks with even more sympathy.  I tell her I'm really good and I say it with pep and instantly I realize pep is not at all appropriate for what is about to happen.  Beth asks me, with even more gravitas, how my weekend was and this time I tell her that I really am ok but in a much more serious tone.

In the chemo room, there are two big blue reclining lazy boys (relaxing!) next to two IV carts with wires and buttons (not relaxing!).  I take one chair and Michael is reluctant to take the other so he sits on a nurse's stool with wheels.  Beth takes my blood pressure.  It is something like 100 over 66 and for the first time in my life my blood pressure numbers register in my brain.  Beth asks me if that is normal for me and I tell her that no, that is on the low side.  I'm so thrilled that I know this, but she looks at me hard and says "You are very relaxed." in a way that tells me she is either worried about me, puzzled by me, or both.  I tell her I am practicing meditation and I am happy to know that it is working.  I am not masking illicit drug use.  I am sincere.

She weighs me.  The drugs will always be tailored to my exact weight and height so she'll weigh me at the start of every treatment.  I have not gained or lost an ounce since the last time I saw her, though I was out to try to gain some.  She told me to start eating five times a day instead of three.  My dad and I came up with a list of healthy proteins to add to my meals and snacks.  I hadn't heard of hemp hearts, but those little guys are now all over my oatmeal in the morning.  Along with my usual heap of organic berries.  And the oatmeal is now made with hemp milk.  I'm not saying it's delicious but it's also not bad, and since I know it's super good for me eat every bite.  

Now that I am obsessed with an anti-cancer diet, I realize that there is a wide Healthy Eating spectrum on which you can fall.  Before cancer, I thought our eating habits were well above normal.  I only buy organic foods, all our grains are whole wheat though usually the pasta is made with quinoa, and processed foods are few and far between.  Lots of fruits and vegetables and NO sodas.  Clio thinks it's a treat when she is allowed to eat breakfast cereal on Saturday.  But now that I'm reading about super foods, I realize there is a whole world inside my health food store that I have yet to tap into.  Slowly but surely I am trying my superfood recipes, and buying bags of goldenberries to snack on.  Ironically, with chemo, I've been told not to worry about it and eat whatever I think I can keep down.

When Beth looked at the scale and realized I hadn't gained or lost an ounce, it registered with her that this is just who I am.  The skinny girl.  And now she knows me.

I get comfortable in the big blue recliner and Beth looks for a vein for the IV drip.  She is a great nurse - she uses a pediatric needle.  It goes in the first time and with only a tiny bit of pain but I still squeeze Michael's hand like I'm seven years old.  (Shout out to my oldest who turned seven last week and I think I'm really going to like seven and by the way, I really wish I were seven right now).  The first two bags to go up on the hooks and into my veins are saline and an anti-nausea medicine.  It takes 30 minutes or so.  I go into the bathroom to pee before the real drugs hook on and I take my IV cart with me and I navigate well all the bumps in the door frames.  I have become very good at walking around with IV carts and peeing with needles in my hands and arms.  I am hyper-aware that I should not have these new skills, but there we are.

When I'm back relaxing in the big blue recliner, Beth comes in with a larger than life syringe filled with blood-colored liquid and she asks me how I'm doing.  I tell her straight up I was doing fine until she showed up with that thing.  "This is the Adriamycin," she tells me.  "It's red and your urine will be red so don't be alarmed."  She sits down, pops a cap off my IV tube, and settles in to add the drug to my veins manually.  But first she tests the needle and there is a sound that makes me cringe and I turn away and cry out and she asks me if everything is ok and I have to confess to her that in addition to hating needles I also hate sounds that come out of needles, but I did not know that until this moment and I'm very happy to have had that anti-nausea drip.

In order to distract me, she does what every good nurse does and changes the subject.  So we get to talking about the kids and I tell her Clio turned seven and she's super tall and she's going to be taller than me in about 3 days.  Then Beth asks if she's tall and skinny like me.  I tell her she's not as scrawny as I was and that I hope that she will not have to endure the nicknames "twig," "beanpole," and "stork."  While the Adriamycin drips in, I confide in Beth that being the skinny girl is not all it's cracked up to be and now she knows me even better.

Next Beth hooks up the Cytoxan, another bag that hangs and drips, drips, drips for about 40 minutes.  Meanwhile Michael has occupied the other blue cushy recliner and pulls out his work papers and starts to work and this makes me happy.  His pages are full of teeny tiny numbers in boxes and he is reading them and making notes and I cannot fathom what he is doing but it makes me happy.  I read on in Anti-Cancer, a gift from my friend Jenny.  I pick it up and put it down but here I find great solace as I read about cancer studies and cancer fighting foods.  I wish I had read it ten years ago.

And then the machine beeps and we are done.  Beth goes through my meds with me, what to take and when.  There are six or seven orals, mostly for nausea.  There is one syringe, to be administered by Michael tomorrow night in a fatty area of my body so we choose my belly.  Michael hands me a dark chocolate Hershey's kiss.  There are many of these in bowls in every room of the office.  They are wrapped in PURPLE!!!!! tin foil.  I eat my congratulations-on-finishing-your-first-round-of-chemo chocolate while Beth gives us our post-chemo instructions.  We set up Chemo #2 for June 3rd, and we head out in search of lunch before the nausea sets in.

1pm.  One more bridge crossed.

A Second Opinion with Socrates

There has been a lot of running around.  I’m tired but I'm happy to do it, anticipating the days ahead when I won't be able to run around at all.  Lots of doctors and therapists to see.  Second opinions to find.   Is this the storm before the storm?  Or the storm before the calm before the storm and the cicadas?  I asked my doctor to move my chemo up to coincide with the cicadas so I would have a really good excuse to stay inside.  I have no problem admitting that I hate bugs more than anything in the whole wide world.  Even more than Gwyneth.  I can kill a gnat (sorry Rachel), but anything larger than that I will throw a pan over it and wait for Michael to come home.  So all my chickens are coming home to roost this year and I have to face all my fears head on - bugs, needles, and a bald head.

Michael and I sat down with another oncologist over at Memorial Sloan Kettering on Tuesday.  This doctor came highly recommended to us and we pulled some strings and a friend made a call to get us in to see her.  She spent a lot of time with us and I stared at her while she examined me wondering if she was Socrates reincarnated.  She asked me questions about my health and my history and my family’s health history and after 127 questions and a long pause she looked at me and said “Well, what are you doing here?  You don’t belong here?”  It was all I could do not to cry in front of Socrates.

But I didn’t cry.  I pushed through the burning sting in my eyes and listened to her reassurances that we are on the correct path with chemo and radiation, especially given that the cancer cells made their way out of the ducts and into the vascular region of the breast, the most worrying part of the pathology report to her.  She picked up the phone and called my other oncologist, Dr. Ruth, and they cancer-chatted in a cancer-collegial way as they are old friends.  When she hung up, she took my hand and told me I was in very good hands with Dr. Ruth and all will be well.  I was very happy to have had the chance to sit down with her.  I was also very happy to have had the chance to sit in the Memorial Sloan Kettering waiting room because until I did, I had no idea that having cancer was analogous to getting on a cruise ship.  What a perfect analogy for my friends without cancer.  The average age of your fellow passengers is 70, there is quite a bit of nausea, and you stand a good chance of dying.  If you’ve been on a cruise, now you know exactly what cancer is like.

Oh!  And speaking of hanging out with septuagenarians, I am not fully able to lift my left arm since the surgery.  I have what's called "cording" under my arm and in my armpit which was explained to me as my veins tightening around each other but I don't want to pretend to know much more than that as I'm not sure I heard my physical therapist correctly in the first place because as soon as doctors start talking about body parts my inner monologue becomes the song "La la la la la la la la la."

Anyway, I figured it would be nice to have my left arm back and it would be even nicer to be able to shave my armpit so I've been going to physical therapy a couple of times a week.  My physical therapist happens to be my shorter twin from Long Island.  We are both young moms, brunette and thin, we wear identical glasses and we both hate Sheryl Sandberg for telling us to lean in.  Also, on my first visit we are wearing the exact same outfit: black sweatpants and a white tank top - WHAT ARE THE CHANCES?!?!?  She stretches me out and teaches me exercises to do at home three times a day.  She warns me that I may hear a "pop" when the veins come loose.  (Uh.  Gross.  Can I do my exercises with ear plugs?)  She wants to relax my upper torso before she gets to work on my left armpit so she lays (Mom, is that the correct use of lie/lay?) me down and works my neck area and massages my lead pipes, the areas once known as my shoulders.  She chats me up in a nice soothing way.

Being identical, it is easy to chat with her and soon I find myself over-sharing yet I am grateful for the distraction from the pain.  She pulls my left arm against its will and I breathe like I'm having the contractions I never had because I had two C-sections.  I figure it’s time to start asking her questions so she can talk about herself and I can concentrate on my pain.  I ask her to tell me about her two kids and she tells me about her 2 ½ year-old and what a handful she is and I relax a little because I remember that my children are no longer that age.  Then she pulls my arm up over my head, where it doesn’t want to go, and she works her fingers around my cording.  Right as I'm about to tell her how much I wish Sheryl Sandberg would get breast cancer, I hear my therapist's knuckles crack.  I think nothing of it for half a second but then my mind grasps the low probability of knuckles cracking on an armpit and I say:

Me: "Was that you or me?!"
She: (grinning) "That was you."
Me: "AAAAUUUUGGGGHHHHH!!!!!!!"  (Awkward silence.  Then, sheepishly)  "Gross."
She: “Are you going to be able to handle chemo?”
Me:  “I don’t think so.  But does this mean I can shave tonight?”

Uh oh. Chemo.

This will be short because I am exhausted and I have to be at The Cancer Center at 8am tomorrow morning for a PET scan, which will be loads of fun and I cannot wait to tell you all about it in the continuing story of "You Are So Lucky You Are Not Me Right Now."

So Michael and I sat down with an oncologist yesterday, the medical professional who treats you after your entire breast has already been removed because there is always the chance that there are still cancer cells lingering around in your blood, your lymph nodes, and anywhere else they are not welcome. The oncologist determines whether or not I will need chemotherapy, radiation, and/or hormone therapy - all different tools they have for battling lingering cancer cells in different ways.

(Insert drum roll here)

I will start chemo some time after Memorial Day. I may undergo radiation following that (still TBD while we await the Oncotype test which is a genetic test of the cancer that they removed - results in 2 weeks). And following radiation would be 5 years of hormone therapy to reduce, for example, the estrogen in my body that my particular cancer is 100% fond of.

That came as a little bit of a shock as we were hoping my DCIS had not travelled. But it did travel and it has probably been in my body for a couple of years and who knows where it may have gone. That's a lot for you to digest as well, I know, since I'm pretty sure I told you I wouldn't need chemo and we may have done a subtle cheer together around the topic. Sorry! I'll buy you a beer.

Personally, I am still trying to digest going bald and wearing scarves. My ears stick out, you know. So I am toying around with the idea of a blond wig to match my larger breasts and then I might be able to find a job as a Fox news anchor.

I can make a joke, but don't be fooled. I spend a lot of time crying. I cry a lot and curse a lot and I apologize to my husband and my parents for being the asshole who went and got cancer and turned everything upside down. But the crying feels great, even though it looks pathetic. If you saw me cry, you would start to tear up, too, because it really does look sad. I think you would certainly pull me in for a hug, because that way you wouldn't have to look at the sadness, you could just bury it in your shirt and wait for it to be over. But then I would worry about getting snot all over your pretty shirt so I would have to pull away and fetch some tissues. You might, if you were feeling particularly vulnerable that day, grab a tissue and dab at your eyes and force yourself not to cry because one person in the room should have some composure and it pretty much has to be the person without cancer.

After a cry, I feel rinsed and washed and clear and calm, so I don't want you to feel bad for me. After a cry, I can see the day for what it is - a gift to me. I am not dead, I am here. And I'm not sitting in the Chemo chair right at this very moment. So that's something, isn't it? Crying actually makes me aware that I can not physically cry every minute of the day so there will be moments when I'm not crying and isn't that optimistic? (I don't know for sure since Optimism and I don't get along very well).

Spending lots more PRESENT time with my kids. I play endless games of Go Fish and Uno with Willa where she cheats but I kind of love it so I let her. Clio and I sometimes sit and read together and I have to be careful not to cry wondering how the hell she got so big that she is reading next to me in bed, quietly. Both of them can still be little shits and I still have to be their mother so our days do not play out like a detergent commercial. Still, I am grateful for every minute with them. And they know what's going on and they are brave and not at all scared. Well, only a tiny but scared when they like to practice their theatrics.

Shit. It's late. Thanks for all the phone calls. And all the gifts. And all the texts. And the cards. You will here from me. At some point. I promise. I love you guys so much. Thanks for helping me through.