Oh Hawaii...

The three of us had never been to the big island and Jase and Nigel had never been, period. But there we were, bleary-eyed and stunned at the Kona airport.

“Where are the walls???!!!” Nigel asked. 

Ah yes, in tropical paradise, there are no need for walls at the airport. Simple thatched rooftops to guard against the rain is all that’s required. (The Kona airport is both adorable and seductive.)

Throughout those torturous months of chemo, I had imagined this vacation, myself laying on a towel underneath a palm tree, reading. But now that Hawaii was a reality, I found that laying about was the last thing I wanted to do. 

We were on the island that boasted physical activities! And heavily potholed dirt roads that required four-wheel drive. Secluded beaches, interesting hikes, amazing snorkeling, and of course, an active volcano. There was much to be done!

Our condo was situated near downtown Kona by the ocean. It had the architecture and tired look of a 70’s stucco building, complete with an open-air atrium of palm trees and tropical flowering plants. The slate tile installed in the walkways was from another decade, perhaps the 90’s. I imagined the building must have been painted light pink in its first iteration, however, it was now tan and sky blue. The letters on the sign, Kona Reef, were simply painted over in baby blue to match the building’s upgraded aesthetic, but the R had been lost along the way so it was hand-painted onto the stucco and faded enough that a passerby might accidentally read it as Kona Keef.

It was perfect. 

Ours was a corner unit that faced the palm-treed beach and ocean. Every morning we watched surfers bobbing in the waves. Sometimes there were teams of rowers gliding peacefully across the glittering horizon. Everyone looked so far, far away. I couldn’t imagine being that untethered from land, especially on one of the most isolated islands in the world. 

In the evening, the town paused to watch the sunset. Cars pulled over onto the side of the road and people sat on rock walls or the sandy beach, quietly entranced by the sea. We all waited for the green flash, that elusive magic that happens once the final sliver of sun sinks below the horizon. Sometimes the hippies stood on their dreadlocked heads in twisted yoga poses, their tanned bodies awash in rosy orange light, everyone’s faces illuminated by the sun’s glow. 

We never saw it. Faraway clouds always managed to wreck it. And right when we’d be holding our breath thinking, It’s almost here! It’s almost here! the sun would disappear behind an invisible pile of cotton balls (the vog turns the horizon into a white soup that blends perfectly with other types of water vapor) and all we’d get was the golden outline of a stratocumulus invader. 

But we did so much! Kayaking and snorkeling and boogie boarding and hiking. We took a helicopter ride. We tasted coffee and macadamia nuts from local farms. We bumped along hellish dirt roads in our SUV rental in search of pristine beaches. I bought fruit with unusual names like sour sop, dragon and rambutan and presented them on plates for breakfast (Jason and Nigel stabbed at them tentatively with their forks). Once a Philippine vendor gave me a handful of calmansi for the strawberry and rainbow papaya I had pulled out of the wooden bin. A bright green gecko scuttled around the fruit. Another time, when I asked the native who had rented us kayaks if I could use her bathroom before we launched, she responded: 

“Number One or Number Two?”

“Number One.”

She pointed at the ocean. 

I had packed three books and didn’t read a single one. We were busy exploring! I remember looking in the mirror amazed by a bruise in the middle of my forehead and with no idea how it had arrived there. Only when we returned home did I count 16 more all over my body and 12 additional scrapes and scabs. When people exclaimed, “What happened to you?!” I had my reply.

“Hawaii, naturally.”

Last summer, I had to avoid the sun.

The chemicals from the chemo made my skin react poorly to its rays. This was probably one of the more difficult parts of chemo. All I wanted to do was recline on a chair, close my eyes and drink in the sun's warmth. Preferably by a swimming pool. Summertime in the Pacific Northwest is so mildly wonderful. And fun! And I was experiencing neither.

We tried to “get away” with a mini vacation, a day trip to Pacific City and Tierra del Mar on the Oregon Coast. We scheduled it on a Friday because my infusions were on Wednesdays, so I wouldn’t be feeling too badly. Also, my white blood cell count would be teetering somewhere within the normal range, fingers crossed. Jason ordered a beach tent from Amazon and I packed the necessary supplies: an umbrella, a book, lots of water, toilet paper and a small brown paper bag to discard my “white flowers.” 

Driving to the coast was the last thing my body wanted to do, but we were determined to see the ocean as a family. I reclined in the car, gulped down waves of nausea and slowly inhaled deep breaths of air conditioning. Once we arrived, we walked onto the beach and felt the hot sand between our toes. Jason set up the tent and I gratefully sat inside, ready to rest—my legs felt like brittle toothpicks holding up a boulder. Whenever I needed to pee, I walked into the brush where brown rabbits lived, swatted and released apologetically—I’m sorry, I’m sorry, I’m sorry—to Mother Nature. No doubt, my toxic piss left dead zones in the dirt. I placed my soiled toilet paper wads in the brown paper sack and carted the evidence back to my tent. 

Mission accomplished. We took a mini family vacation during my chemo treatments. But we really looked forward to our spring break vacation in Hawaii which marked the end of cancer. Almost. A final surgery was scheduled after our return. But Hawaii represented the culmination, our apogee, the point from which we moved forward and got to live without cancer as a daily reminder. 

We successfully made that trip. And the surgery was completed three weeks ago. And today, we celebrate Jason’s birthday as a regular family with all the shuffling around of our busy schedules. For a couple of hours tonight, we get to pause from that disarray and eat a great meal and have dessert. As a regular family. 

Happy Birthday, Love!

(Tierra del Mar, August 19, 2016)

Once you're diagnosed with breast cancer,

you’re given a list of shitty options. None of them feel like your life will be improved (except to kill and remove the cancer. Period). Each woman has a very personal decision to make about her breasts. And like many, I had the added bonus of reflecting upon and making my decision while on chemo. Thankfully, I received boob intel from survivors which helped with my choice. Here was my list of shitty options:

1. Lumpectomy & Radiation 

If chemo successfully shrinks a tumor to a small enough size, you become a candidate for a lumpectomy. Thankfully, my tumor dissolved into virtually nothing so I was offered this choice. A large chunk (we need those clean margins!) of the lower portion of my left breast would be removed. In order for a lumpectomy to be effective, a daily dose of radiation for 4-6 weeks is required. Without radiation, my breast cancer would have a 40% percent chance of returning. 

Radiation burns the skin and inner tissue. And it is fatiguing. The radiated skin also becomes permanently scarred. Not to mention that my left breast would be a different size from the right one (although reconstruction by adding body fat into the missing area is an option). My personal thoughts:  After chemo, I didn’t want to be knocked down by another intense treatment. I didn’t want one of my breasts to feel differently (both the skin and the area where my mammary glands were replaced by fat) from the other one. I didn’t want to be heavily radiated and then constantly freak out about future air travel and X-rays at the dentist’s office. Sayonara, lumpectomy. Next option.

2. Single mastectomy

I had the choice to remove just my cancer tit. I could have had reconstruction only on my left side. However, it’s difficult for plastic surgeons to replicate a fake breast that accurately matches it’s living mate. You can’t get twins. Perhaps sisters. Or worse, cousins. Not to mention that there’s a temperature differential between the fake and real breast which becomes more noticeable when you work out or are in extreme hot or cold locations. And then gravity has it’s way with the living breast while the fake one begins to look less related and more like it’s neighbor. Besides, fake boobs without breast tissue don’t fit into bras, but the living one most certainly requires it. Moreover, the fake breast doesn’t have much sensation so I would always feel lopsided. 

And the biggest decision-maker:  I would have 30% percent chance of developing a second primary breast cancer in my living breast. Why? Because I’m considered very young for breast cancer and the odds are high that I will have it again in the future. My breasts are very dense, so mammograms are difficult to read. And I’ve already had a biopsy in my right breast five years ago. Even though it stays well-behaved, it’s a bit shady. A 30% possibility of more chemo? Forget it. Next!

3. Bilateral mastectomy & going flat  

My first reaction was that this might be the option that works best for me. Just chop them off and forget about it. I figured I could wear falsies whenever I wanted to get dressed-up and go out. But a flat chest isn’t so flat. When we think of zero boobs, most of us think of men’s chests, but on a woman, going flat is going concave—with a delicate bone that protrudes from the center of the chest. The majority of women’s ready-to-wear clothing is also cut for breasts, so depending on your clothing choice, there can be fabric baggage around the torso. And the falsies are unwieldy and heavy. They have to be held down with a special bra, but that doesn’t always work as they travel north, south, east or west depending on the activity. And you don’t always notice when one has gone renegade unless you look down. 

For me, this sounds like way too much of a hassle. And most importantly, I don’t want to become a conversation piece every time I walk around with a t-shirt. Going flat is noticeable. In warm weather, it’s constantly wearing a sign, “I’ve gone through hell—my tits are chopped off.” There were a lot of stares when I publicly went bald. I was okay with it because it was temporary. But if given the choice of a little anonymity, I’ll take it. Next. 

4. Bilateral mastectomy & reconstruction 

Oh the irony of me stating that going flat was too much of a hassle. The reconstruction has been a serious hassle. However, it’s only a four-month hassle versus a lifetime hassle (but there’s ongoing maintenance that can be explained later; I have much more to say about this experience). Be warned: it doesn’t end after the chemo is over. Four months of wearing chest expanders before the exchange surgery is a total hassle and you should be prepared for it. I chose reconstruction for four reasons: 

• 1) I want the illusion that a little piece of me has returned to normal after my extreme surgeries—like when I get out of the shower and look in the mirror. One survivor told me that eventually there will be days when I will forget that I ever had cancer. I can only attribute this to the fact that she had reconstruction and doesn’t have a visible daily reminder.

• 2) That anonymity thing. While people notice a concave chest behind a t-shirt, they do not notice reconstructed breasts. 

• 3) The only way insurance pays for reconstruction is during the mastectomy. Meaning: this is a one-shot deal. So far, it has cost insurance $36,000 for the reconstruction during my mastectomy surgery. That doesn’t include the follow-up visits, the fills or the exchange surgery. Holy tits! (I figure if I hate reconstruction, I can always remove my second pair of boobs at a much lower cost.) 

• 4) Jason. My breast cancer was more traumatic for him than for me. Jason had to be a bystander through this whole ordeal. He had zero control. One thing he really wants is to have his wife back. He wants me to be healthy. He wants me to have hair. He would like to see me with a set of boobs. While the decision about my body is ultimately my choice, Jason is my husband and I love him. His feelings carry weight, and I take them into consideration with most of my decisions in life, this one included.

Other survivors navigate their list of shitty options with different outcomes, so it’s important to note that the interpretation of my shitty options is exactly that: my personal translation. However, boob intel from others does help. Hopefully, you will never be faced with making a decision based on this list of shitty options, but in life, everyone gets a list. We don’t have a choice in that.

Fill 4

Wow, I've been gone! As in lost in the real world. My major event is completed (I underestimated the attendance numbers; instead of 600-700 people, it was more like 1,000-1,200. Oops). But it's finished and I'm moving onto other things.

Before I planned that big event, I made a big decision: I decided to get a fourth fill. I originally had skipped it. I went to my appointment, talked to my plastic surgeon about the exchange surgery and when she asked, "Are you ready for another one?" and motioned with her arm to the table (the syringes quietly rested on a silver tray, their needles hidden by protective sheaths), I grimaced and shook my head. I was done. Until... 

Until I went out to coffee with a flat-chested friend and realized her boobs were about the same size as mine. And while she likes her breast size, she says she frequently wears padding. Why? Because tank top arm holes can gape, creating a peep show for perverts. Padding pulls the fabric forward, reducing the size of those arm holes. I didn’t get into this reconstruction can of worms in order to wear padding. After our coffee together, I immediately scheduled a fourth fill for a second time. 

Throughout my reconstruction, I was told to wear my favorite clothing and look at the bumps on my chest. They would determine how I felt about them. Bigger? Smaller? Just right? The morning of my coffee, I buttoned up a well-loved cardigan. Buttoned it up. Without stretched fabric and gaps between the buttons. Hallelujah! However, my bumps disappeared entirely. It was a loose cardigan, but still…

One survivor told me that the fourth fill moves you out of the training bra stage. I see that now. This fill provided me with breasts in relaxed clothing.

The plastic surgeon’s office is mostly concerned with the Infra Mammary Fold (also known as the IMF). Once the breasts have an adequate amount of fill, there’s a natural-looking fold that occurs. It doesn't require much to get the IMF. I've had it since the second fill. However, the average amount of fills that women receive at my plastic surgeon's office is six to eight--and the majority of women go smaller than they originally thought. If six to eight fills is considered a reduction in breast size for all these survivors, that means one thing: my tits are going to be tiny! I've had the DD knockers. At this point, I'm okay with whatever mini bumps I end up with. The main thing: my fills are officially over!

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.