Every health professional tells me

since it took five months to get into chemo, it will take five months to get out. Meaning: I won’t return back to normal until the beginning of April. While this is true, I’ve also heard that energy awakens at the three month mark. I had my three month celebration at the beginning of February and I have to say, I started to feel great mid-January. Before that, I moved slowly. I required naps. I burned-out quickly. It took me three days to recover from the holidays (I laid in bed, slept and did nothing). I still behaved like an old lady. 

By mid-January, my entire world shifted. A veil was lifted and I felt injected by a ebullient, unstoppable force. I’m euphoric. My friends tell me I look radiant. In fact, a stranger touched my arm at the grocery store and said that I was literally glowing. Contrary to my belief that chemo would age me, it has done quite the opposite. I can only attribute this to the regeneration of all those cells it had killed. Like many things, it won’t last, but I’ll take it while I’ve got it. 

More importantly, I’ve jumped into the human flood of activity. I’m currently organizing the Oregon Battle of the Books regional comprised of 60+ schools. Our crew of historians, architects and I have met with the city commissioner to discuss restoration of the Vista Bridge. I’ve managed to sew 20 garments. I started to work out with my personal trainer. I’m rounding up kids for the Fried Eagle zine. I’m being invited to lunches, coffees and evening drinks with girlfriends. I finally volunteered at Nigel’s middle school for the first time (with his permission). I’m running errands daily, cooking nightly, cleaning the house weekly, driving Nigel back and forth from activities. I’m back!

And yet…

There are some things that need more time to settle into the new normal. Perhaps with more protein. I’m tired of eating protein. I’m such a plant-based eater, protein is difficult. I’m told to continue eating more since my body continues to work on recovery—especially after the surgery. I feel sparks of nerve connections—little fireworks inside my body—on the side of my left armpit where six lymph nodes were removed. I’m told this could last for years. 

And the phantom pain! I feel the cramping of my cancerous lesion, especially at night. Then when I quickly, nervously move my hand to the site, all I feel is a big hollow breast. But it’s presence is there, inside the hollowness. I feel like I have my old breasts. Whenever I jog, I feel their heft. Whenever I lay down, I feel them pancake off to my sides. But my phony boobs are an illusion. They stay put, never jiggle, don’t require a harness and stick straight up when I’m flat on my back. My tiny Barbie missiles.

While my fingers have recently pushed out the last of their bruised, thickened nails, my big toes require more time. Dark pieces of nail crumble off whenever I trim my toes. But with each crescent snip of the clippers, I slowly reclaim them. My brain is still a little hazy, but I’m far less forgetful. Ironically, my GI tract began to misbehave after I finished chemo. I swallow probiotic pills, sip kombucha, and eat cups of yogurt. And yet… (sigh). 

These are minor issues. I’m grateful I’ve recovered so quickly. Only two months to go—just in time for my final surgery. Oy! 

Books Read During Hysterectomy/Oophorectomy

Since some of you have been interested in my reading list, here’s what I read during the three week period right after I was diagnosed with breast cancer and during my hysterectomy/oophorectomy before chemo:

1. Steve Jobs by Walter Isaacson

I didn’t know this book only focused on Jobs as a person. I wanted to learn more about the Apple culture which was rarely mentioned (and there are so many great stories out there). However, it was still a good book, never stale. You learn about Job’s reality distortion field, his intense perfectionism and his wacky eating disorders. The moral of the story: in order to create an innovative product that changes the world, you need to be a whole lot of crazy. 

2. The Namesake by Jhumpa Lahiri

This writer had me at her second collection of short stories, Unaccustomed Earth. Oh. My. God. The Namesake is absorbing and really good but it's not Unaccustomed Earth,.  

3. Interpreter of Maladies by Jhumpa Lahiri

This was her first collection of short stories and it won the Pulitzer Prize. They are great. But read them before you settle into Lahiri's matured writing of Unaccustomed Earth which is beyond stellar. 

Fill 3

These fills are ridiculous. Third one. I’ve talked to my reconstructive surgeon and we’ll do perhaps one more. Maybe. And that’s it. Before the bilateral mastectomy, I was a DD bra size, so I originally thought I would settle for a C cup. Smaller yet curvy. Jason is a tit man, after all.

But the fills suck. Plain and simple. And it’s absolutely disgusting to think that my chest muscles are being warped. I’ve heard that sleeping positions can be affected by the larger the silicone implants, too. These are 100% fake, no mammary glands for padding. They move differently than normal breast tissue. I don’t need to wear a bra anymore (bonus!), in fact, bras don’t fit the phony tits. And since silicone tends runs colder, I don’t want big cold boobs. I’m always cold as it is.

So after the first fill, I revised my C cup size to a B cup. But in freaky cancerland, bra sizes don’t matter anymore. It’s all about the amount of saline cc’s injected into me. This is confusing. Everyone keeps telling me to gauge my size by how far my boobs stick out from my chest. But when one expander is growing up high near my shoulder and the other one is growing downward by my ribs, it becomes complicated. I’m told not to worry about it, this happens. Believe me, I’m not worried. I just want it done.

My plastic surgeon installed expanders that hold up to 450 cc’s of saline. That would require six fills. Hahahaha. NO. WAY. I’m currently at 300 cc’s (apparently I was filled with 150 cc’s during surgery, not 100; this was a surprise to me). So I might be settling for an A cup size. I don’t know. Nobody knows—including bras.

What I do know is that my breast surgeon removed over one and a half pounds of boobs. And I didn’t expect the sensation I felt when I first sat up after surgery. The weightlessness! I stood arrow-like, too. One and a half pounds doesn’t seem like much unless you hold a 28oz can of tomatoes and place it right in front of your chest. I wonder if my back and neck will release much of their chronic tension in the ensuing years. Suddenly, I’m a huge advocate for breast reduction. I absolutely love these little boobs! 

Fill 2

A few hours after the first fill, I thought it would be easy. Although my chest felt stretched, I didn’t feel any pain—that is, until I woke up at 3am and hobbled to the bathroom to grab some Advil. For this second fill, I was prepared. I took a valium after I returned home. It didn’t help with the pain, which was more acute than the first time, but it helped relax my muscles. And no middle of the night wake-up. 

The second fill made the expanders less pinchy as they rounded out a bit more. Not only did I feel stretched, I felt like I desperately needed to nurse which is ridiculous because I don’t have any mammary glands and the expanders are behind my chest muscle. Nonetheless, I felt like I needed a baby sucking on these phony tits of mine.

I also got a lesson on what it means to be curious when I asked the nurse if I could see an expander.

It looks so innocent and marshmallowy soft in the nurse’s hands, but it’s quite menacing. My tits are rock hard and uncomfortable. The center alien eye is where I’m stabbed deep through my muscle. Interestingly, the only metal in the expander is the magnet circling that orifice. I could have sworn there was metal touching my ribs. Also, it had been difficult to sleep because I was confined to my back. A week ago I carefully rolled onto my side for the first time since the surgery, hugging a large pillow to my chest with two little pillows shoved under each armpit and a lower one in-between my legs. The amount of pillows I’ve accumulated in the middle of our bed has made a wall. “Are you trying to tell me something?” Jason asked. 

The nurse is entirely fascinated by the reconstruction process and her words come out in chirps. 

When she flipped over the expander to show me the other side, she casually mentioned that the three tabs are stitched onto my ribcage to hold it in place.

“My ribcage???!!”

“Well, the facia of your ribcage.”

“Disgusting!”

“The stitches haven’t dissolved yet, so you probably feel them pull.”

“Gross! But my left arm is still tight.”

“That’s from the lymph node removal. And to make sure they removed all the mammary glands, they also scraped your skin.”

“Oh my god.”

And, yes, I do feel a dull inner tug deep within my ribcage whenever I reach high or move my torso. And now I know why.

Books Read During Chemo

1. The Madwoman In the Volvo (Sandra Tsing Loh)
If you're going through menopause or close to it, this book is for you.

2. A Breast Cancer Alphabet (Madhulika Sikka)
All of my breast cancer books were gifts from friends and each one was very different. This book is very practical. The author explains what you will need during chemo and post mastectomy and what will happen to your family, marriage and body.

3. Mammary Lane (Rosemary Griggs)
This breast cancer book is emotional. The author is an artist who complied her drawings, paintings and short stories into a book. This can be read many times.

4. The Witches of Eastwick (John Updike)
Well written, perhaps a bit wordy. But irreverent and hilarious--and lots of sexual escapades around a hot tub :)

5. A Visit from the Goon Squad (Jennifer Egan)
Excellent!!! My favorite book of the bunch. Won the 2011 Pulitzer Prize. I will read this again.

6. Home Cooking (Laurie Colwin)
A wonderful "cookbook" of sorts. Sarcastic and wry. Anything by Laurie Colwin is a winner. She has an steadfast underground following (Google her) and we're all very sad that she died so young. Nigel and I prepped our black cake during the summer and we will bake it for the new year...

7. The Sound of A Wild Snail Eating (Elizabeth Tova Bailey)
This book was such a thoughtful gift (more on this later). It's the author's true story about being bedridden for a year with an illness. One of her friends randomly grabs a forest snail and puts it in the pot of a gifted plant by her nightstand. It marks the beginning of a very interesting friendship between the author and snail.

8. A Beautiful Blue Death (Charles Finch)
An entertaining murder mystery with a very charismatic protagonist. A historical fiction piece set in the Victorian era. A great beach read.

9. Crazy Sexy Cancer Tips (Kris Carr)
Gifted to me by a friend who had thyroid cancer. Intended for the 40 and under crowd (an overlooked cancer demographic). The author was 30 when she was diagnosed with stage 4 cancer. She's an inspiration.

10. Family Happiness (Laurie Colwin)
Another Laurie Colwin book! However, this one is not about food, it's one of her fiction novels. Her writing is pretty.

11. The Marriage Plot (Jeffrey Eugenides)
If you like Jeffrey Eugenides, you'll like this book. I can't help but compare it to his unparalleled Middlesex. And that's a hard one to beat.

12. Folly (Susan Minot)
Anything by Susan Minot. Any place. Any time.

13. The Amazing Adventures of Kavalier & Clay (Michael Chabon)
Engrossing, endearing, very creative. Perhaps a bit lengthy. Won the 2001 Pulitzer Prize. This story will stick with you.

14. The Adventures of Tom Sawyer (Mark Twain)
Every summer, I pick one or two books to read aloud to Nigel. This was the one. We laughed until we cried. Mark Twain is just plain awesome.

15. Not That Kind of Girl (Lena Dunham)
A second-hand gift from a friend who's a voracious reader. Cute, neurotic and brave. But written by a twenty-something with twenty-something issues. For a middle-aged woman, The Madwoman in the Volvo is a more suitable choice.

16. Lunatics (Dave Barry & Alan Zweibel)
A loaner from a friend who said to beware of this book. It destroys every notion of political correctness. And if you laugh, some people might think you'll be going to hell...

17. Marriage of Opposites (Alice Hoffman)
Another second-hand gift. Alice Hoffman is such an incredible writer. Although compared to her Blackbird House, this one falls short.

18. The Memory Keepers Daughter (Kim Edwards)
Gripping. You won't be able to put it down. And really good writing (the author is an Iowa Writers Workshop grad).

19. My Life in France (Julia Child)
If you like food and/or Julia Child, you'll like this book.

20. Swallow the Ocean (Laura M. Flynn)
Another second-hand gift. My least favorite book of the bunch.

21. White Tiger (Aravind Adiga)
Original and engrossing. A fictional account of India's class struggle. Won the Man Booker Prize.

22. Ten Little Indians (Sherman Alexie)
Nine little awesome stories. Anything by Sherman Alexie. Anything.

23. If Joan of Arc Had Cancer (Janet Lynn Roseman)
This book focuses on strategies for dealing with the emotional impact of cancer. Lots of art therapy, visioning and meditation. Very helpful!

24. A Farewell to Arms (Ernest Hemingway)
Heartbreaking. Helps you understand a little bit of WWI. Hemingway is like sex and pizza. Even when it's bad, it's good.

25. Zero K (Don Delillo)
Interesting premise. Very eerie. But so slow it bores the reader.

Fill 1

I had my final drain removed the same day I had my first expander fill. Those drains are not pleasant. That final one ruined my chi. I could feel it coiled inside my “breast.” Every time I moved, it moved. And the entry site of the tube became very itchy, not to mention the stitch holding the tube in place. Occasionally, I would feel a thin, icy pinch that would make my entire body run cold. 

Ironically, it wasn’t the drains that gave me the most grief. I had six sentinel lymph nodes removed underneath my left armpit, and this area is the most tender, still. It feels swollen, sore and numb. I have to gingerly rub my deodorant on it. The inner muscle that runs the length of my left arm is tight. And those six lymph nodes are tiny—half of a diced worm at best. The bilateral mastectomy was nothing compared to the removal of those little annoying nodes. 

However, I’m moving onward. Chemo down. Surgery down. Drains removed. Onto the freaky expanders!

Every week, I will visit my reconstructive surgeon and she will plunge a three-inch needle attached to a giant syringe filled with 50 cc’s of saline through the skin and muscle of my chest. I have a port attached to each expander bag. My reconstructive surgeon finds these ports with a magnet, dots the perimeter of the area with a purple marker (What is with these purple markers? Are there any other colors???) and then proceeds to stab me. I will continue to receive weekly fills until I say, “Stop!” Ultimately, I get to decide my breast size regardless of how difficult it is tell what size they will be. 

The expanders are strange. It feels like I’m wearing a very tight sports bra. There’s metal in them and they push up against my ribs. They’re also big. The saline runs near my armpits and a few inches below my clavicle. I’m a blow-up doll. Or a partially deflated one:

Your poor eyes! At the moment, I have a scrotum hanging from my chest. It’s only the right breast, too. And if you think the above photo is bad, I texted some of my friends a picture of a dusky nipple that was having difficulty attaching to my skin with a cheerful, “Merry Nipmas!” The crisis only lasted a few days. My breast surgeon sent me to an acupuncturist who smeared a homemade poultice heavily scented with lavender over the top of my witchy nipple.

The bilateral mastectomy required my nipples to be moved upward. My areolas were punched out like Christmas sugar cookies and stitched back on at their new site. Poor Jase continues to dutifully apply digital stars on top of them for the sake of this blog. Upon seeing these latest pictures, he exclaimed, “Good god woman! There are some things a husband just shouldn’t see!” And yet, when given the option to resign from his duties, he begrudgingly trudges forward. 

He and I both. 

(Before my first fill; 100cc's of saline were injected into the expanders during surgery.)

(After the first fill--150cc's are in there!) 

(No more post mastectomy camisole! My new bralette.)

Fuck! That hurt!

Hahahaha! Not really. It didn't hurt that much.

Seriously.

(A few hours after surgery)

Ouch! That looks painful, but it honestly wasn't so bad. This surgery felt much better than the hysterectomy/oophorectomy I had at the beginning of this ordeal. Perhaps because the first surgery was internal and the mastectomy is in many ways external--boobs are an appendage. I also had some help in the form of a pain pump. This was my friend for three days:

It slowly pumped lidocaine (a numbing agent) into my chest. The only discomfort I felt was from the drains on the side of my body. After the pain pump completed it's job on day four, I only used oxycodone six times. Now I just pop two Advils in the morning and call it good.

But those drains are bothersome and pinchy. Here's what I mean:

Whoa, I know! I swear I'm turning into a robot. (Jason put stars on my nipples just in case Blogger gets pissy about it. I honestly don't care if you see my nipples. It's all reconstructed. My boobs are not me, they're Dr. O'Brien.)

So back to all those tubes hanging out of my body... The two small ones in the center were for the pain pump. While I was recovering in the hospital, my head filled with post-surgery haze, I was notified that I would pull those out myself. Wha--? This was in between the PT who instructed mandatory exercises, my breast surgeon who decided to worm her finger underneath the surgical tape and onto my nipples to double-check that they were still warm, and the OT who recommended I use tongs to hold a wad toilet paper to wipe after using the bathroom (for the record: I never had to use tongs, thank you very much).

But back to those center tubes... I had to pull them out myself. Jason and Nigel are squeamish, so I was solo on this mission. One deep breath and a very strong desire to rid myself of these attachments was all it took. There was a surprising amount of tension, like playing tug-o-war with dental floss. At one point, my arm began to shake from the strain which was disconcerting (and I'll admit, a little nauseating). And those tubes were much loooonger than expected.

But I still had four drains to contend with: one inside each upper breast and one inside each lower breast. Twice a day I had to strip the tubes (squeeze and run my fingers down the length of each one), empty the fluid into a measuring cup, and document the amount. And this isn't just any type of fluid, it's a strange broth that grows chunks of human tissue. How miraculous our bodies are!

Each tube has a stitch to hold it in place. They're extremely uncomfortable and if I move too quickly they jab me with a sharp pinch. I can only sleep on my back and I'm getting tired of it. In fact, this bilateral mastectomy gig would be far more pleasant without these drains. Each one must produce less than 30cc's of their nasty miracle fluid before it can be removed. The upper two drains were removed the first week post surgery. The lower right one was removed yesterday. And while their removal was quick, it was not fun. I still have one inside me. Hopefully, it will be pulled out tomorrow if it stops churning out excessive broth and squiggly tissue. Then I can get rid of this:

(The post-mastectomy camisole with special pockets to hold drains)

There is a light at the end of this tunnel.