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. 

Infusion 16

My neutrophils had remained at 1,100! so it was definite: I was going to receive my final infusion. Number 16 (or number 15 if you consider that I skipped over unlucky 13). Regardless, I was in the infusion room a lot. 

Jason was with me for this one. It was our moment, the end of phase one, the most labor-intensive phase of this breast cancer treatment. We brought some pink gerber daisies in Mason jars decorated with gold ribbons, and I handed them to the receptionists and nurses.

I sat in the infusion chair, unfurled my bundle of blankets, received my Benadryl and other pre-meds and got hooked up to my final bag of the poisonous swill. I wasn’t sure how Jase and I would react to this infusion—I figured we might hug and cry when it was over. It had been five very long months. 148 days. But I promptly and unceremoniously passed out. 

After what felt like five minutes, I woke up to see a shriveled bag nearly emptied and Jason working on his laptop, fingers clicking on the keyboard.

“I slept through it???” I said.

After the nurse de-accessed my port, we were free to go. I was tired. Jason was exhausted. A couple of the nurses congratulated us before we trudged out the double doors. And that was it. Finished. Chemotherapy ended the same way it began—with little fanfare and a strong need to leave the infusion room.

People have asked what it feels like to get an infusion. It’s simple. Go to your grocery store. Find the bleach and grab a jug. A gallon or smaller-sized jug, it doesn’t really matter. 

Now chug it.

Infusion 15

My neutrophils had increased to 1,100, so I was able to receive a combo carbopatin/taxol treatment. Normally, the carbo/taxol is administered at the beginning of each cycle, but this was in the middle of cycle eight, my final cycle (landing the chemo plane means that treatments can be shuffled around). My oncologist also reduced the amount of carboplatin for a second time, so my dosage was much lower than the previously reduced amount. This was my final infusion of the terrible drug. Sayonara, carboplatin! 

Infusion 15 was special because it was two days before my birthday. Normally I don’t celebrate my birthday, but considering that you only live once (as if I need a reminder), I decided to give back. I ordered a very delicious cake from a very delicious place and invited all my friends who have been instrumental in making this cancer clusterfuck a little easier. I figured five people would show up in the middle of the day at a pretty awful venue, but there ended up being 14 of us. Thankfully, one of the private infusion rooms was available. Everyone got a hearty slice of cake, and I partied on Benadryl (See Benadryl Face below. And why is it that a bald head is so stark in photos? In case you didn't notice: HERE'S MY HEAD).

In addition to receiving some very beautiful and thoughtful gifts (friends, we need to talk; I was supposed to give back to YOU), I also had a private viewing of another naked boyfriend photo. Awesome!

I was nearing the end! One more infusion to go!

Happy 46th to me.

Wow.

There is nothing else to say.

(Except that we have a sexual predator and racist demagogue who questions our democratic process for President).

Jason forwarded me this which explains the cultural divide in our country. It helped. Perhaps it will help you, too.

There has been so much going on in the past five months since I've been lost in la-la faerie land: mass shootings, creepy clowns and now a new President who didn't win the popular election. One breast cancer survivor told me I'd lose and gain friends and family over my diagnosis. I've experienced some rough times in my life, so I thought I had it all figured out: Of course. I've been through this before. But it's always shocking when someone decides to behave badly.

Yesterday while I was driving through the hospital's parking garage, a man in his late 50's tried to walk in front of me. As I passed by, he yelled and swung his arms in the air and hollered that I was stupid. There was so much anger on his face. I don't like that sort of behavior but even more so after this election because, quite honestly, he looked and acted like a quintessential Trump supporter. Throughout my life, I've been blamed by older white men and I've been groped and now that I've gone through chemo, I have had enough. So while I was driving past his angry face, I rubbed my bald head, pointed at it and then flipped him off. It's cancer, so back off motherfucker! Now we both had behaved badly.

Nigel was in the back seat. "Whoa," he said. And then we howled with laughter at the man's stupidity and mine, too.

Hardship is a mirror. It reflects the true character of the surrounding people. And our family has been blessed to receive so much unconditional love and support.

For starters, we didn't cook for five months! Five months. June, July, August, September and October. At first, Nigel was really upset. He likes my cooking. For him, it's a deep connection to motherhood and love and a cozy home. But everyone cooked and baked with so much effort and care, that the transition was seamless.

So many people were dealing with major life issues and yet they still wanted to give. One recently single mom with four young children went out of her way to make us a casserole. She couldn't even make a double batch (one for us, one for her) because her kids don't like mixed foods.

Another mom calls her three kids "a bunch of little fuckers" because none of them like the same meals. However, she diligently made us weekly dinners in addition to all the specialized meals she had to cook for her lovable effers.

And then there's the creativity of the gifts received. One family traveled through Spain this summer--and lit a candle for me in every church they visited. Imagine all those little glowing candles in all those little churches.

I've received a necklace of healing stones, a heart-shaped rock found in Italy, snails (yes, snails!) and three special blankets each with their own story.

There have been care packages for me, care packages for Nigel and special outings with the guys for Jason. Not to mention all the playdates and overnighters for Nigel. There has been yard work and body work and planted ferns. Homemade perfumes, essential oils and every kind of protein powder imaginable. Loaner wigs and a gifted wig, two hats and a robe. A cashmere cape, one scarf and a pair of socks. And books! A ton of books. And gift certificates and a spa invitation and beautiful indoor plants. Also, the flowers... In the past six months, there has only been one week where our kitchen counter did not have a bouquet on it.

Not to mention all the kind words. Words hold so much power. All the loving texts and phone calls (I had to turn off my phone's ringer and haven't turned it on since--this is a good thing). All the emails, so many emails. And, of course, the cards.

There has been so many stop, rewind and do-overs. So many, Yes! Come over! And many more, Please, don't! And through it all, everyone has been so considerate and kind.

I've posted pictures of some of these tokens of love, partly as a reminder for myself but mostly to thank all of you. It shows how caring people truly are. Even though we might experience appalling behavior, creepy clowns, mass shootings and a President whose rhetoric eerily reminds historians of the budding Nazi movement, the majority of us are a considerate, loving bunch. It's deep within us, this core of humanity, this tender essence of who we are. What we hold seems so fragile, but it is rugged and strong. And yes, there are always exceptions, but for the most part, human beings are beautiful--and robust and tenacious and ready to claw into with bloodied hands those inalienable rights for ourselves and for others and never let go.

Do not give up hope.

Infusion 14

I entered the chemo clinic expecting to be declined after my blood draw. After all, my neutrophils were at 500 the previous week. But lo and behold! my numbers had shot up to 900! This was too low for a carbo/taxol infusion, but I was able to get a simple taxol treatment. And even better, my oncologist stated that I would leapfrog over unlucky 13 and move forward with infusion 14 (skipping one treatment was still within protocol). 

However, I had not expected to get infused. I had cancelled my drivers. But several waited for a possible emergency text--just in case. It went like this:

Holy shit! Getting infused! Come on over!!!

I wasn't prepared. I didn't wear my armor (handmade shirt, black cardigan, feather down ski vest, Adidas pants and Converse sneakers). I didn't bring my lucky blankets (very personal gifts from two friends). I didn't eat beforehand (it's a bad idea to get pumped full of hard-core drugs on an empty stomach). All I wore was a feminine handmade coat, dainty slip-on shoes and a loose-knit sweater that would hardly keep me warm. However, I did manage to bring a book, wear my necklace of healing stones from the Book Club Babes and slip on my wedding ring before I walked out the door. 

Our friends have been so patient and flexible throughout this entire ordeal. And while I waited for three of them to drop everything and come to my rescue, the nurse prepped me with my anti-nausea meds: one steroid tablet, Pepcid (yes, the heartburn relief drug) and Benadryl (used for possible allergic reactions to the chemo). 

Before breast cancer, I had never taken Benadryl. I heard some of my allergy-prone friends talk about it. They complained that it made them sleepy, but it was a sensation within a reasonable spectrum: they would get tired and yawn. I once gave it to Nigel when he was a baby. He still woke up many times during the night. Yes, he was lethargic, but it wasn't lights out.

It's interesting what happens when a nurse plunges a syringe of Benadryl into your port that goes straight to your heart... One minute, I'm talking and laughing. The next, my head falls forward because my neck has turned into jelly, my eyes droop and I become silent. 

I'm near the end of chemo. My oncologist says that we're landing the plane. The wheels are down, the flaps are up, but there's a lot of turbulence and the plane flies topsy-turvy. That's when things are tweaked to fit the patient's needs. In my case, skipping an infusion and reducing my dosage. In the middle of all this turbulence I can see the tarmac from high above and I'm so ready to be done.

I passed out for 45 minutes in the clinic before my girlfriends arrived. One handed me a magazine and stayed briefly before darting off to run errands. Another drove my car home while my third friend and I followed behind in her car. My eyes still drooped. My head lolled back and forth. And when I arrived home, I crawled into bed and took a two-hour nap.

It has taken so many people to fly and land this plane.