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.

Even though I recently posted about my final infusion,

it actually happened a month ago. I have officially pushed my legs away from the bottom of the muck and emerged out of the water, blinking and gulping the air. After that final infusion, I crashed hard. For two weeks, I didn’t do much, mostly slept and puttered around the house. Ironically, I’m finally able to drag my body onto land only to be thrown back into the mess again. I’ll get to that in a minute.

But first, let’s chat about this chemo. For starters, I’ve gained 15 pounds! I’ve been on a steady diet of steroids since June so it’s not too surprising (my oncologist notified me that half of her patients gain weight on chemo). Whenever the nurses, naturopath or oncologist asked me how I was doing, I would reply, “I’m hungry.” This delighted them. Each round of chemo breaks down the body’s cells, and calories—especially protein—is needed to rebuild it. And while my naturopath was the only one trying to steer me toward healthy food choices and zero sugar (ha, fat chance during chemo!), nobody else was concerned. As the nurse navigator said, “Healthy food choices after chemo. Right now you need calories.” And so I ate and ate and ate with a big smile on my face. 

(It’s important to note that I also ate out of fear. Have you ever seen an emaciated person on chemo? Most are severely anemic. Some can barely walk. To lose 15 pounds from chemo is not the same as losing 15 pounds from a healthy lifestyle. Not at all.) 

My heart, my glorious heart has returned! The first half of my treatments gave my heart a weakened squeeze. This resulted in very low blood pressure, 60/40 (I didn’t feel faint or dizzy unless I really exerted myself). My blood pressure returned to normal during the second half of chemo, 100/60 (it’s always been low). One night when I was three weeks into the second half of treatment, I was startled to hear a familiar sound thrumming inside my ears, head and chest. Thump-thump, thump-thump, thump-thump. My heartbeat! With all the noise from the chemo vibrations, I didn’t notice that my heartbeat had disappeared. Something had felt “off” but I wasn’t able to identify it until my heart made it known. And now that the chemo vibrations have dissipated, I can hear my life engine, loud and clear. 

I can taste food again! Chemo destroys fast-growing cells: hair, nails, the gut, etc. This sadly includes tastebuds, too. The hour after an infusion is the worst. I once ate cheese fries with ketchup and all I tasted was chalk. My tastebuds have now blossomed on my tongue, however after five months of reduced flavor, extreme sweet and salty foods have become way too intense. Salt on my eggs: okay. A bite of organic cheese puffs: SALT LICK! Honey on my yogurt: fine. A bite of dessert: SUGAR CUBE!

My fingernails are almost back to normal, but my toenails still look bruised and mangy. They will eventually grow out. But more important than the looks of my nails was the avoidance of neuropathy (numbness in the fingers and toes that can cause permanent nerve damage). It’s very common to get neuropathy during chemo. Since I do so much work with my hands (cook, sew, embroider), I was terrified of this. The naturopath gave me Neurosol pills to help avoid a potential flare, but it was a feeble effort. There’s not much one can do to avoid neuropathy. Thankfully, I only felt pins and needles on the ends of my fingers and toes a few times after treatment. And those sharp little sparks only lasted for a few seconds each time.

Finally, that carboplatin… Two weeks after I completed chemo, I went in for a blood draw. My neutrophils had tanked yet again and were down to 700. A healthy neutrophil count is between 2,500 to 6,000. I will receive another blood draw today.

Before my surgery.

A bilateral mastectomy.

In fact, I scheduled to have this blog post go up at 1:30pm, the exact time when I’ll be going under. 

And if you’re reading this at 1:30pm, then my breast surgeon is serenading me right now. 

I’ll post an update once I return home from the hospital.