Now, more than two months on from my hospitalization, it’s probably time for an update. Just as I predicted, the high ambitions I had to use this as my journal, a stage, and a primary mode of communication have gone unfulfilled. I think that there’s a fallacy when it comes to how my mind works regarding the urgency to write. My writing mind becomes most active when circumstances seem dire; the first few days after returning from the hospital, I scrawled ideas for posts and essays all over errant envelopes and slips of paper littering my nightstand. But those essays haven’t been realized and now those pieces of scrap paper are mostly dusty and sticky with stale oil as I flutter them aside to make room for finger bowls of snacks. And so maybe that’s good news– urgency has transformed into routine, and routine can be interpreted as stability.

The routine these days is a week where Wednesday is the point of reference and not, say, the weekend or the Monday start to the work week. Wednesdays are chemo days, and if not chemo, then an injection or some other appointment. At this point, it feels like P could probably drive blindfolded to Dana Farber. He drops me off for every appointment, then heads to the “cell phone lot,” which is just a parking garage with supposedly “robust cell service.” With COVID-19, visitors are not allowed to accompany patients, so he waits in the car. His forbearance deserves an award, given that some of my days at the clinic can take up to five hours. Meanwhile, P takes his work calls, “kicking in the front seat, kicking in the back seat” (see https://www.youtube.com/watch?v=kfVsfOSbJY0 0:34-0:44), and once on a stupidly hot day even sitting in the rear of the hatchback, i.e. the world’s worst tailgate party of one. But hey, there’s “robust cell service”!

Once at Dana Farber, there are also a number of other routines to follow. With COVID-19, all patients are required to go through an initial screening upon entering the building. Security waves you towards the screening line, where you stand (masked of course) at least 6 feet apart from the patient ahead of you (helpfully premeasured and marked on the floor). A nurse, behind plexiglass, then checks you in by asking a series of questions that follow a standard protocol: in the last 14 days, have you been in contact with someone who has a positive test for COVID-19?; have you come directly from a private residence?; Do you have new or worsening symptoms including fever, cough, shortness of breath, muscle ache, runny nose, sore throat, rash, less of taste or sense of smell? If any symptoms are present, then a call is made to your oncology department to determine how to proceed and an escort arrives to take you directly to the appropriate floor, in order to limit contact with anyone else.

Given that persistent fever has been an issue for me and is essentially what triggered writing to my oncologist months ago, eventually leading to discovering the metastases, the routine of screening has been a complicated experience. I can’t exactly lie about having fevers and although a note has supposedly been made in my file regarding fever as an ongoing cancer and/or treatment related symptom, I don’t always “pass” screening. Especially in the first few days after my rediagnosis, screening was an emotionally difficult routine, despite my knowing that it was mostly a mechanical process. There was one day, for example, where my heart started to pound as I stood in line anticipating the questions. I tried to remain stoic as I walked up to the screening nurse, but, as soon as she asked about fever, my answer came out in sobs: “yes” I gasped, “but it’s not coronavirus, it’s the cancer.” I remember being tense as a board, my arms pinned to my side like a soldier at attention, nose dripping into my mask, eyes blinking wildly through the tears, too scared to wipe anything lest I break public health guidelines (don’t touch your eyes, don’t touch your nose, don’t touch anything). As I continued to bawl, the nurse ran out from behind the plexiglass, handed me a wad of tissues, and put her hand on my arm, saying gently, “it’s ok. Do you want a wheelchair to bring you up?” At that time, with Massachusetts in the middle of the pandemic surge, that a nurse took a risk with that human touch was to me an admirable act of compassion.

I have become much more used to the screening process since then, and while still fraught, I can now deliver answers about my fevers dispassionately. I have also become accustomed to being escorted to an isolation room out of caution. It’s a bit surreal on those days as nurses either communicate with me through the door, or when they enter to insert my IV or give me treatment, it has to be done so in full PPE (gown, N95 mask, gloves, face shield). They are almost always very apologetic, explaining that they know how alienating it must feel for me to receive care this way.  But I get it. These are not normal times and safety is paramount. 

My current routine is not what I initially expected. IV chemo was not a part of my original treatment plan and so I hadn’t thought that I’d need to go into the clinic so often. When first told that I could think of my metastatic disease as a chronic disease, I was able to accept that characterization especially because the plan was to take a targeted therapy that came in pill form that I could take at home. It was quite literally more palatable for me to think, ok, I’ve done that before and lots of people take daily pills for lots of diseases. But unfortunately, the targeted therapy I was given, Verzenio, didn’t work for me and may even have been the culprit of the major bodily distress that sent me to the hospital. Or, it could have been the cancer was growing rapidly. I don’t know, and actually, neither does my oncologist. And so here we are again with IV chemo, which I kind of think of as the “big guns” of medical oncology. (As an aside, I don’t really love the war metaphors that are often used when talking about treating cancer, but I have also internalized them because they are so pervasive. More on that another time.)

The good news– in this context– is that the chemo I’m on, eribulin (or brand name Halaven) is working very well for me. Blood tests are trending in the right direction and suggest that the cancer is shrinking. I am incredibly grateful that this therapy is currently working and that, in the words of my oncologist, with it, I have “stepped back from the brink.” In fact, given this positive response, my oncologist wants to keep me on this chemo for as long as it continues to be effective, and for as long as my body can bear it. So, there’s the rub; cancer is smart and chemo is toxic. There will come a time that the cancer genes will mutate and eribulin isn’t going to work anymore. There will also come a time my body will say that it cannot handle the wear from this drug anymore. But then we move to the next line of treatment; that is also part of the routine, and, I do find assurance that there are still several lines of treatment at my disposal even if none of them are curative.

Yesterday, I made a vanilla sponge cake, on the stove!
But I charred the bottom completely.
I trimmed it with a bread knife
Threw the sooty layer into the sink

Two days ago, I googled “oophorectomy”
What a funny word—oof,
I wonder if removing my ovaries will help me live
longer, but turns out, not really

Three days ago, I was supposed to work on a paper
I kinda did
I reread the same paragraph over and over again
It feels like old times

Four days ago, I beat the heat
Blended cucumbers, mashed the pulp,
I strained
added lemon, ice water, is this detoxing?

Five days ago, I ate pizza
wished my friends a good road trip south
I love them.
She and I both have cancer; it’s so stupid

Six days ago, I hurt all over
I cried. Not because it hurt, because
I feel so fucking sorry
for myself

Seven days ago, I stuffed multigrain crackers
into my mouth at 3am. I am so hungry, the ‘roids–
I am so squishy, ugh
menopause. I am so bald

Last week, I spoke on the phone with a friend, also living with metastatic cancer, and sought her counsel on just how to be and how to hold the tremendous burden of this diagnosis without being overcome by it. She told me that a fundamental belief of hers was that “there are worse things than having cancer.” In the moment, I tried to receive this wisdom, but it was very very difficult. I paused. I stuttered. I responded with some kind of platitude. I understood the direction of this belief, but having been home from the hospital only for a few days, I couldn’t summon the magnanimity needed to move beyond my own hurt and trauma to authentically accept what she said.

But this week– this week it is so devastatingly clear that there are worse things than having cancer. That worse thing is to have a knee grinding into your neck for almost nine minutes, to have your humanity completely disregarded, to cry out for your dead mother as you suffer, to be executed with utter nonchalance, to die from white supremacy. George Floyd was his name; he was a son, a brother, a father, a friend, a parishioner, a community member. He had goals and ambitions, and by all accounts, a big loving heart.

There are worse things than having cancer and cancer doesn’t happen in a vacuum. The first time I was diagnosed, in 2015, I had just about started my chemo treatment when the Paris Bataclan nightclub shooting happened. I remember thinking that it felt like my personal world had stopped with the diagnosis, but the world hadn’t stopped. There was still violence, terror, and intractable conflict. And I wrestled with, what can I do more of, to counter pain, fear, and separation in this world? But at the same time, I felt like I had no energy to give to the outside world. I just wanted to cocoon myself, be safe, and sleep and sleep and sleep.

These days, I have been thinking a lot about what it means to be safe—what does it mean to be psychologically safe, to be physically safe, to be safe in America? Since being told by my oncologist on April 24 about my metastases, a stage IV diagnosis, I have felt stalked by death. Even if hopefully far away, its contours have been made visible to me. Most days, in metaphorical and literal sunlight, it is barely perceptible. But there are days it comes into sharper focus and then fear, much as I try to resist, gets the best of me.  

In those moments of fear, though, I still have recourse to believing in safety, that others will work to keep me safe. Last week, on my most recent trip to Dana Farber, I began to panic in the car. My heart raced, my body heaved uncontrollably, and I started retching. By the time I got to the waiting area for my blood draw, I had calmed down considerably, but was still shaking and agitated. I closed my eyes, tried to breathe deeply and slowly, and repeated a mantra to myself: “there are people here to keep you safe. They will take care of you. There are people here to keep you safe. They will take care of you. There are people here to keep you safe. They will take care of you.” The mantra for the most part worked and the panic subsided.

What buttressed the confidence that I would find safety? Because although safety is a human right, of course we know that to have safety (physically or psychologically) is simply not a given for all. And it is definitely not a given for Black America. My trust that I can access safety is a compounding of privileges: secure shelter and a home owned by my parents, steady income even throughout the pandemic, a cushion of savings, robust health insurance, access to world-class hospitals, a wide social network, a supportive husband, a skin color that marks me as different but not typically as a threat. I joke sometimes that if I’m going to have cancer, then I am under the best structural conditions to have it. There are worse things than having cancer because, for me and in this body, even in the moments of greatest fear or anguish, I can reach out towards safety. I can trust that my life matters. I do not have to defend it or insist on it.

My friend, who grew up abroad witness to state violence and conditions of poverty and inequality, knows the truth behind “there are worse things than having cancer” much better than I. The daily inequities, surveillance, constant affronts to human worth and dignity that are perpetuated by structural violence and institutional racism create a gnawing suffering just as destructive as cancer. As I think about the days I feel stalked by death, this feeling of bitter vulnerability that shrouds me is a chronic condition as well for those who are not guaranteed safety– not in recognition by others, not in treatment by the state, not in resources, not in movement, (and certainly not in healthcare). George Floyd had no chance to reach out to safety as his body was literally crushed, nor did Breonna Taylor as she slept in her own home. Safety should be fundamental for all but that will never be the case as long as militarized law enforcement is funded and continues to exist, maintaining what Patrisse Cullors, co-founder of Black Lives Matter explains is “an economy of punishment over an economy of care.”

When I think about how desperately I want to feel safe, how visceral the feeling is, I know that an “economy of care” is the system that we need to fight for, for Black lives, for our collective humanity. For me, to allow that there are worse things than cancer isn’t intended to be callous (for myself or others), but a call to move beyond my own despair. I can’t promise that I will always know how to do this, but I can try.

There are numerous resources online (much more comprehensive than anything I can put together, such as here and here) regarding how to educate ourselves to be antiracist, take continued action, and stand in solidarity with the movement for Black lives. Being severely immunosuppressed has kept me away from protests and demonstrations, but in the immediate term I am committing monetary resources to supporting victims of police brutality, organizations supporting divestment from police departments, and non-profits that advocate for racial health equity. I am shifting my consumption practices to patronize more Black-owned businesses (like Frugal Bookstore in Roxbury, MA) and pledge to move money into a Black-owned bank. These small steps alone obviously don’t change a system, but they bring some individual accountability into concrete action.

(I actually started this post last week, but kept getting sidetracked from finishing. Now, I’m posting this before it isn’t relevant anymore! So, the list of side effects below isn’t entirely complete, but I’m probably the only one who is super concerned about that.)

It has been over a month since chemotherapy ended for me and surgery is tomorrow (March 11). Friends have asked how I’m feeling about the upcoming surgery, and specifically whether I am feeling nervous or scared. Surprisingly, although I’ve never had any form of surgery before, I am not feeling particularly scared. It could be that I’m not actually thinking about it all that much. Sure, I have been thinking about it because of the decision making that I’ve had to do, but from a kind of existential or reflective standpoint, I haven’t been spending very much intellectual energy on it. From the beginning of this ordeal, undergoing surgery has been a given– I never expected there to be any other option and perhaps because of that, ruminating on it hasn’t seemed necessary.

Additionally, surgery has been an accepted way to treat breast cancer for a very very long time. According to the book the Emperor of Maladies, there is a known story from 500BC of a Persian queen that had a breast tumor so painful that she just had to have it all cut off. Chemotherapy, on the other hand, seems to be  more controversial, not in the medical community, but among laypeople. It is a common protocol for treating cancer, but there is no shortage of dire warnings, tirades and conspiracy theories on the internet about chemotherapy being pushed as a result of the machinations of big pharma. And yes, chemotherapy is essentially a suite of poisons that are used to kill cells and in that killing cannot necessarily distinguish between non-cancerous and cancerous cells, so I can see how it can seem like a gamble. When I went forward with chemotherapy, it felt like I had to defend it somewhat, while surgery has not raised the same kinds of concerns from others. And, thus, absent the external swirl of opinions, going forward with surgery seems pretty straightforward and I’m ready to just get on with it.

I’ll be getting a unilateral mastectomy with no reconstruction. Writing this makes me think about how interesting it is that in this context discussion of the breast is so clinical. I’ve had friends and acquaintances ask about the kind of surgery I’ll be getting and I find myself discussing this body part in detail but with a kind of medical detachment. My interlocutor usually follows suit, but when I think back to it, it’s so funny, because our conversation can involve pretty intimate questions about my boob that I otherwise would feel very uncomfortable answering. But in this case, a cancerous organ is a cancerous organ and discussions about “cutting it all off” doesn’t engender the slightest bat of an eyelash.

So, the title of this post. Most days I’m fretting about whether I’ll ever get my energy back but sometimes I’ll think backwards and already in the span of a month can’t quite remember all the details of how bad it was on chemo. That’s a good thing, because it tells me that I have made physical progress! At the same time, I feel it’s important that I take stock honestly and openly about the “ugly stuff” because it can serve as a reminder of how far I’ve come and at the same time, I think could be a resource if anyone else with breast cancer ever finds this blog. I know that as I was searching for blogs to read, I did want to know how bad it could be, though that’s not for everyone. Additionally, I recognize that the nadir of my experience wasn’t even that extreme in comparison. Rather, it was also the accumulation of relatively minor annoyances that contributed to making the experience difficult. In hindsight, it’s easy to brush aside some of the side effects that were more irritating rather than severe, but I want to make sure I document this so that years ahead I won’t think back and wonder “did I make all  that up?”

The good

• I’ve been using the same bottle of body wash/shampoo that I bought in October and it’s only half done. My showers are about 5 minutes and my head dries really fast. No cold, wet hair in the winter for me!

The bad (i.e. tolerable annoyances)

On A/C

• Headaches where my head felt clammy and like I had been exposed to extreme amounts of pollution
• Hair loss (including my nose hairs! Which, doesn’t seem like a big issue at first, but I can no longer anticipate snot coming out my nose, which can be very embarrassing when trying to have a conversation.)
• Tacky/dryish mouth with a sickly sweet taste

On Taxol

• Muscle twitching in my legs (imagine someone constantly pinching you and your muscles recoiling from that)
• Wobbly leg muscles, feeling like a newborn fawn
• Constant mouth taste of metal and/or rancid garlic
• Random regurgitation of food

On Neulasta (a white blood cell stimulator)

• Brittle and painful bones (felt like a piece of porcelain that could be cracked in any moment)

Lingering

• Nail discoloration
• Brittle and weak nails
• Dry mouth
• Acid reflux and the feeling of food stuck in my esophagus
• “Chemo brain” and difficulty finding words; this is especially annoying when I’m in meetings and suddenly it feels like everything is moving very slowly and my thoughts come to me only at a glacial pace
• Hot flashes (which is likely more related to being in menopause now, rather than the chemo itself per se)
• Neuropathy– loss of sensation in my fingers (imagine that you’ve scalded your fingers slightly, now imagine that feeling doesn’t go away)
• Freezing feet and toes: I thought this was related to neuropathy and having some temporary nerve-related effects, but the doc said this was something different, though they don’t exactly know what the cause is

The ugly (i.e. made life more challenging and/or sometimes made me cry)

On A/C

• Constipation and then bite-a-towel-to-get-through-it bowel movements

On Taxol

• Irritated veins: my veins are pretty small and even seasoned nurses and phlebotemists don’t always know what to do– my right arm has “juicier”veins, you might say and I was trying to use that side more because after surgery I won’t be able to have IVs on that side. As a result, my veins were pretty irritated and a few times when I was getting a benadryl drip, it felt like I had fire ants eating up my arm. (Taxol can cause allergic reactions, so the benadryl is used as a precaution.)
• Painful hand and finger swelling (bad enough so I couldn’t turn a key or a doorknob)
• Extreme can’t-get-out-of-bed fatigue with a side of “oh my gosh, when will this day ever end. HOLY CRAP it’s only been 8 minutes since I looked at the clock, how will I ever get through today?”
• Vomiting 8 times in one day, with no food and barely any water in my system and finally seeing that bile is indeed yellow

Lingering

• Consistent fatigue and muscle ache

Ok, so that’s it for now! I’m heading to bed early since I have to be at the hospital by 5:30am. Surgery is at 7:30am and should take about 2-3 hours. I’m only staying one night in the hospital. The next time y’all see me, I’ll be one body part lighter…

Happy year of the Monkey!

It seems my solar new year resolution to blog more hasn’t really panned out, so now I’m giving myself a second chance with lunar new year and making sure to share something at this auspicious time.

First off, as my friend R put it, nomo chemo! My last infusion was on February 3 and today marks the two week period where normally I’d be at Dana Farber and sweating as I prepare myself for the IV insertion. Instead, this morning I had an easy breakfast at home, got to see a friend from Virginia, took a walk, and did a little bit of work. It’s a relief to have this short respite from the clinic. During the last few visits, I think I started to get some anticipatory or associative anxiety where I would feel just a bit unsettled inside. For example, I would suddenly feel exhausted just riding in the car heading to Dana Farber for an acupuncture appointment, even though moments before departure I would be full of energy.

With one chapter of treatment behind me, I’m beginning to look ahead to hopefully post-cancer life. There’s still surgery–and potentially radiation–to go, but with the routine of chemotherapy over, I feel more ready to visualize what it is that I want for myself a few months or a year out.

For me, I want my physical strength and energy back. I’ve never seen myself as particularly athletic and I wouldn’t say that I have boundless energy. I’ve never been one who has to exercise to feel good or centered, and remaining active isn’t a notable preoccupation. But now, every day, I long to feel energetic and to be able to go about a regular day’s schedule without feeling depleted. While I’ve experienced many side effects that have been unpleasant, fatigue has by far been the most trying. It’s like an ether that I’m suspended in, invisible yet ever present. And it constantly reminds me that something is amiss—oh, walking around the block never used to be tiring, making breakfast was never taxing before, sitting up straight shouldn’t be so hard…

So, I want my energy back, but I also want to feel strong. My aim is that within a year, I’d like to run at least a half marathon again and do an overnight hike (which I’ve never tried before). Anyone else in?

TLDR: Despite the diagnosis, 2015 was pretty rad.

Happy 2016!

Last night, P had the great idea of having us sit down side by side and write out our (unranked) “top ten” moments of 2015. As we went through the exercise, we realized that it was challenging to determine what kind of grain size of experience we were going for– as in, a literal moment, or a day, or perhaps an entire week/month that got collapsed as one feeling and memory? Regardless, we also realized that both of us ended up writing out a lot more than ten discrete moments or experiences, which is a testament that it was a really really good year. That actually felt like a surprise to us, because of course, the last 2 months of 2015 had been so completely dominated by cancer cancer cancer. It was refreshing and joyful to  be reminded that while cancer is a reality in our lives, it’s not the whole of who we are. (And I use “we” because, as I’ll probably explain in a future post, one of the ugliest parts of this disease, or perhaps any serious illness, is how it wends itself so completely into the life of the caregiver as well.)

So below, is not the top ten moments exactly, but month by month highlights from 2015:

January

We literally started the New Year in Shanghai. P & I were in a taxi trying to get to the Bund in Shanghai to see the countdown. Traffic was horrendous, though, and we got to the waterfront around 12:15am on January 1st. That ended up being a good thing, because as I learned only the next day (after a call home) that there had been a stampede that we were just a few blocks away from. There had been so many people that we had had no idea.

China, 3 cities: Shanghai, Guangzhou, and Changsha. It was P’s first time there and my fifth. We chose Shanghai for it’s hyper-reality, Guangzhou because it’s where my parents are from and Changsha because I taught there more than a decade ago. We rode the high-speed trains, we did a spectacular night run in Guangzhou, and we stuffed our faces everywhere (unforgettable shengjianbao in Shanghai, shuangpinai in Guangzhou, and choudofu in Changsha). We met old friends and made new ones and we will definitely be going back.

February

We finally said goodbye to the “Innternets Cafe” (inside joke, too long and too not funny to anyone else) in Jamaica Plain, where I had lived for over five years. In the middle of the epic snowstorms, we helped our roommate move to her new place 10 minutes away in one direction and we started a 2 month stint housesitting for friends in a place 10 minutes away in the other direction.

There was so so much snow, but we loved the wonderfully lived in apartment that we were watching and stayed cozy in the study. On Valentine’s Day, we trudged through the snow to have steak at a local bar with our old roommate and her boyfriend. Not too long after that, a friend came to visit and we organized a scavenger hunt that involved hiding packets of BelVita throughout the house. (Yes, you read that correctly.)

March/April

We wrapped up our housesitting gig and I scooted off in late March to Copenhagen for a conference, leaving P to move us back in with our old roommate in her new house. I brought my mom with me to Denmark, and after the conference, we took the train to Sweden to visit Stockholm, with a short stopover in Malmo for a night. Malmo must be one of the loveliest small cities I’ve been to. I hadn’t traveled overseas with just my mom since 2009 and it was comforting returning with her to these tiny hotel rooms and hearing the rhythms of my mom sleeping. It was lovely watching the enthusiasm of my mom trying new foods, and together we stalked through castles and museums, marveled at Scandinavian design, and griped about having to pay 10 crowns for tap water in Copenhagen.

April/May

It was an unusual year of international travel, and in the last days of April, I flew out to Berlin for a special research program that convened young researchers and activists from across the world. I met 18 amazing new friends and colleagues committed to youth participation and youth policy. The three days I spent with this group felt electric– it was the kinship with folks who identified as community workers first and researchers second, a welcome change from the academic world I had been so steeped in for the last few years.

I had also arranged to be in Berlin a few days before and after the convening and P came with me (though we flew separately). We fell in love with Berlin– grafitti, smoke, and beer everywhere. Like a ’90s music video we didn’t want to leave.

June

A younger cousin from California came to stay with my family for a month– a welcome breath of fresh air for her after a lot of hardship with a family member’s illness back home. It felt like a privilege to have a chance to reconnect with family from across the country and to share with my cousin the things I loved about Boston.

This was also the month that P and I watched all 5 seasons of Game of Thrones.

July

Just what did I do this month? This is the month I can’t seem to recall!

August

P and I headed to India, making this the 4th international trip of the year! It was the first time back to Bangalore since my wedding in January, 2014, but it didn’t seem like all that much had changed in the intervening time. But I started to get to know the geography of the city a little better, especially after P and I did a 15 mile run across the city. P and his dad were able to mark out a great route that hit some of P’s favorite parts of the city, and which also allowed us to take advantage of the few sidewalks in Bangalore.

September

I started school with gusto, ready to dive into dissertation work. Two weeks later, everything would change. In the midst of surreal visits to multiple doctors’ offices, I kept asking, “so, can I go to this wedding in Jackson Hole?” And I did go, and it was spectacular. My friends M+A orchestrated this destination wedding precisely to get people to the great outdoors and everything was flawless. I reunited with friends that I had taught in China with and we went hiking and biking and running. I felt healthy and unstoppable, all the while bracing myself for a potential new reality after the trip. But before that, so many wonderful firsts: making my first fireplace fire, cutting into my first ever elk steak, first ever covered wagon ride, first time clapping for 2 miles straight to scare off potential bears on an early morning run (we saw none, phew), and first blood moon.

October 

Since mid-September, I had stopped training in earnest for my first marathon. I had made it to 20 miles, but for at least 3 weeks before the Mt. Desert Island marathon, I had barely run. P and I decided though that we needed a “win” before chemotherapy and even if it meant walking 26 miles, we’d do it. So up to Bar Harbor we headed with my mom and we did it! P asked somewhere towards the end of the marathon if I wanted to do another one and surprising myself, I said I did. So, the goal’s been set!

November/December

Living in and getting to know my hometown again was an unexpected gift. I was able to see the city anew, to a degree. At least 5 days a week, we took/take walks around my neighborhood, and I came to learn the names of streets I should have known, and for the first time noticed this house or that detail. Those funny shutters, awnings– a strange trend of a certain era, neat and rugged little Cape homes. The marshes here, beautiful and underrated; the beach, an amenity I had taken for granted; and the moonrises, simply breathtaking.

My hair’s gone. Well, most of it, but not all. Which is actually more annoying than having a completely bald head, since it means that I continue to litter my hair throughout the house and over all my clothes. My hair started coming out last Tuesday, but since I avoided washing it for days, or running my hands through it, much of it was still precariously attached to my head and preserved inside the cotton beanie I was wearing continuously. Then, 2 days ago, on Saturday, I realized it was time to deal with the inevitable, but wasn’t quite sure how to do it. Had P and I been better prepared, we would have just borrowed some buzzers to shave it all off, but of course, even with weeks now of anticipation, we were not prepared. So, P. said maybe he could use his beard trimmer on the highest setting. Of course, it didn’t work, because a head is not a chin, and my bangs from root to tip were still about a good 5 inches of hair.

So, then what? I decide that maybe the best option is to comb out the hair, and that’s when I find myself in an empty newly renovated room, laying out newspaper over the gleaming hardwood. I’m standing in the center of the room, semi-clothed and vigorously combing, while P. watches from the corner offering help, alternately amused and concerned. My hair sheds off in little bunches that reminds me of falling pine needles. I look over at P. and laugh that it feels like I’m in an art gallery doing some kind of avant-garde performance art. You know the scene– it’s a bit weird, kind of grotesque, and overall absurd.

Now, four days after my second chemo infusion, I’m starting to feel back on the upswing and have a second round of experience to help inform how I might feel going forward. I’ve been told that within each cycle of chemotherapy, the side effects typically follow the same pattern, though the intensity compounds over time with wear and tear on the body. If that’s the case, then it seems that the following is what I can expect:

Day 1 (Wed)- 6+ hours at Dana Farber– IV insertion, blood draw, consultation with doctors, chemotherapy and lots of waiting; difficulty sleeping at night (possibly from steroids I’m taking), flushing the system with lots of water and fluids, night sweats, difficulty regulating temperature

Day 2 (Thurs)- Slow morning in bed trying to catch up on sleep from the activity of the night before, reading, tv watching, podcasts, afternoon walk, nap, monitoring my temperature every few hours, general recovery. 24 hours after chemo, P. also gives me my Neulasta injection, which is a white blood cell stimulant to support my suppressed immune system.

Day 3 (Fri)- Since Thursday is overtaken by the monitoring of physical symptoms, Friday becomes the emotional day. Once I realize that my body is doing OK, I start to feel down about the cancer management and the feelings of being constrained in the role of a cancer patient. I get annoyed I have to take my steroid pills, I feel resentful that most of the “anti-cancer” things I eat were part of my previous diet anyway (as in, I used to eat quinoa because I liked it, but now the stakes of every mouthful are higher). I feel tired, and then I have a sudden burst of energy. I want to work, and then I can’t concentrate. I want to see friends and be social, but then I just want to curl up in bed. I can’t tell if my mood is variable because my body has been put into early menopause, or if it’s the emotional burden of the cancer itself. On Fridays, I wonder what kind of person cancer has made me become.

Day 4 (Sat)- I wake up wanting to feel energetic so that I can prove to myself that I will get through treatment with flying colors. But wanting to feel energetic is not the same, clearly, as feeling energetic. My bones are starting to feel achy from the Neulasta injection, which is a common side effect. My muscles are also stiff, and it feels like I’ve run a marathon, without the corresponding glory or hard work. Since it’s the weekend, I want to take advantage of the time and reach out to people, but again, tiredness sets in. To maintain some kind of engagement, though, P. and I go for walks, or do some small errands.

Day 5 (Sun)- By now, I’m sleeping better through the nights, but it’s not perfect. I’m still having trouble with temperature regulation, and getting up once or twice in the night. When I wake up, I’m still stiff. I feel fragile to the touch. It slowly dissipates over the course of the day, though. Again, I don’t want to cloister myself, but also am not sure where to begin in reaching out… since I get so tired easily, I feel like I am an unreliable person to socialize with. I take walks, and again, do some minor errands.

Day 6 (Mon)- It’s a new week! The bone and muscle pain are gone. When I wake up, it’s still slow and a bit encumbered. I’m not entirely fresh and alert and rearing to go, but I want to be that way. I start thinking about how to best take advantage of feeling good and making sure that I don’t fall too far behind with work responsibilities or just staying up to date and involved in general.

Interestingly, I have to admit that it wasn’t until typing up this post that it has become more clear to me that my current challenges have less to do with physical side effects and more with the ancillary psychological effects. I started off this post thinking that I’d record the physical symptoms day by day, but in reviewing what I’ve just written, it seems that so much of the physical and the emotional are intertwined.

TLDR: Cancer makes me hungry, nom nom nom.

My favorite Street Fighter II character is Dhalsim. He’s the guy from India with the long, extendable arms. And no, that is not a veiled reference to P. or anything. I was thinking about how to introduce that tomorrow will be my second round of chemo and the sound that popped into my head was, “Round 2… Fight!” I thought that was from Street Fighter, but when I looked it up on the internet, it turns out it’s actually from Mortal Kombat. In the world of kids growing up in the ’90s, I think there are Street Fighter partisans and Mortal Kombat partisans. I belong to the former,but I suppose Mortal Kombat left an indelible mark on me as well.

I can’t believe it’s time for Round 2! The last 2 weeks have passed by very very quickly, which is exciting, as I hope that this means that treatment will feel like a quick process overall. Many friends have asked me how I’m feeling. Well, I’m thrilled to report that I feel great!

I think the last fortnight (now, how often does one get to use that as an exact measurement!) has passed by quickly precisely because I feel really good. The side effects, thus far, have been mild. I was told by the nurses and doctors that the severity of side effects tends to be different for each person and that the most common side effects of my current chemotherapy regimen include fatigue, nausea, mouth sores (because the chemo targets rapidly dividing cells and that includes the cells in the mouth) and hair loss.

So far, fatigue has probably been the most obvious side effect. In the immediate few days after my first chemotherapy infusion (that’s the word for it) I would get easily tired during the day. I spent most of those days watching television, reading magazines, and napping. I was able to sleep, although it was usually interrupted several times in the night. I did feel well enough, though, to take walks by Wollaston Beach and also spent a nice Sunday afternoon with a big group of friends noshing on pizza and wings with football in the background. Actually, aside from the chemo, maybe the most out of the ordinary thing that happened in the last 2 weeks is that I watched football (keeping in mind that I might be using “watched” rather loosely). Then, after the first 4 days of laying low, by the Monday after chemo, I felt on the up and up again, and over the week was able to go to school for an entire day, join a dinner and brunch party one weekend, and do a 2 mile run. But, because my doctors also did prescribe me television, I made sure to comply with instructions and continued plowing through Lost and a bunch of ballet videos on youtube.

Since I mentioned pizza and wings above, I should also note that my appetite has been simply voracious! Cancer makes me really really hungry! Since I’m living at home, my mother has been keeping a tight watch on my diet, especially as she wants me to adhere to Chinese medicine principles that believe when a body is in distress and fighting disease one should not eat fried, oily, or overly roasted/charred foods.  In addition to that, my daily menu also includes ample fruits and vegetables that have made the anti-cancer roster among Chinese folks, which include:

• Asparagus
• Prickly pear
• Apples
• Purple yams
• Purple cabbage
• Pomegranate

And of course, no proper Cantonese diet would be complete without leaves, leaves and more leaves (e.g. choy sum, bok choy, Chinese broccoli) and the ubiquitous soup (e.g. chicken, red dates, shiitake mushroom, “monkey head” mushroom & carrot; chicken, sea cucumber, shiitake mushroom, wai san & red dates). P is also experimenting with salads, including a quinoa salad that could compete with any up and coming “fast casual” chain’s offerings.

So, I call this my intox-detox diet, as every 2 weeks, I get an infusion of necessary poisons into my system and then I spend the rest of the time eating whole grains, purple things (rich in anthocyanins), and green leaves. Then, for good measure, I sneak orange things in when I’m at school.

Oh, and this is what I look like now, with a big thank you to Helen* whose handiwork will help make it less shocking for me when I inevitably lose my hair.

*This girl knows how to cut hair, and you’ll split your sides laughing and having a good time in her chair. If you’re in the Boston area, I’ll give you a referral!

TLDR: I’ve learned a lot of new breast cancer vocabulary.

I’m going to make a big disclaimer here that information on this blog will be based off my personal experiences; while here and there I might cite some statistics or facts about cancer that I’ve learned through my own research or speaking with doctors, the technical/medical/scientific information I present here should never be seen as a substitute for scholarly and/or peer-reviewed research. If you’re interested in that kind of thing, the U.S. National Institutes of Health’s National Library of Medicine is publicly accessible and amazing, with free full-text articles: PubMed Central® (PMC).

If you’re like, “uh… I just came to read your blog, and I think you’ve been in school too long…” you still might really dig Cancer Research UK. They’ve got a snazzy interface, are really good at putting out infographics, and have a big social media presence.

I tend to stay away from any webpage that has too too much pink on the site. I actually really like the color pink and am not opposed to building awareness in accessible ways. However, when pink shows up on a site excessively, then I think that the page is really pushing the breast cancer brand more than anything else.

Ok, but finally, to the technical stuff about my cancer. A friend wanted to know more about my risk profile. Also, when I was looking for support online and skimming through blogs and forums, I wanted to zone in on women’s experiences who had cancer like mine, so I’ve realized the importance of tagging oneself with the technical details. Below are my responses to some risk factors based on the list here: Cancer Research UK: Definite breast cancer risks :

• Age: Diagnosed at 32 years old (breast cancer is considered rare under 40)
• Family history: No recent family history of breast cancer (maybe a great-grandmother had it, but this is uncertain). There have been a few cases of cancer in the extended family, but with no discernible pattern.
• Breast cancer genes: I met with a genetic counselor and did genetic counseling recently.  I tested negative for the gene mutation in BRCA I and BRCA II. (These are the gene mutations Angelina Jolie made famous and what prompted her pre-emptive surgeries). In other words, the cancer is not genetic, at least not from BRCA I and II. This is good news because for those who do test positive, the risk of ovarian cancer shoots way up, and so for those women, it is recommended to surgically remove the ovaries by age 40.
• Alcohol consumption: On average <1 unit of alcohol (1/2 pint beer, small glass wine) per week
• Height and weight: average
• Diet: Healthy (I like to think) diet w/ample vegetables and leafy greens and moderate fat intake (mmm… potato chips…)

So, in general, my risk profile is low, but what’s important to understand is that even if one has increased risk on one or more factors, it’s not like there is a definitive causal outcome. Like, boom, I made it happen because of who I am or what my lifestyle is. In this situation, it’s really easy to feel blameworthy, and after the fact of diagnosis, every little less-than-perfect behavior feels like it could be judged by others as reckless. I’m saying this, because even though my risk factors were low, I still slip into a wondering state about whether I did something to make this happen. And very quickly, perhaps because the human mind likes to ask “why” and wants a cause, irrational thoughts begin to surface:  Did I eat one too many pieces of burnt toast? Maybe its all the chemically derived lotions I use? Was it living in a smoggy Chinese city for a year? Is it because I obsessively salvage food and possibly ingested some mold? Note that none of these have to do with any of the risk factors really, and despite that, lurking in the shadows is did I do this to myself?

The details of the cancer itself:

• Invasive carcinoma, Stage II (Stages go from I to IV)
• Grade II, moderately differentiated (Grades go from I-III; this is related to the cell division and the implications on how “aggressive” the tumor could be. Also, under a microscope, how easy is it to tell a healthy cell from a cancerous one? So, “moderately” differentiated is in the middle.)
• Palpable tumor, approx 4cm (you can’t really know exact size because mammograms and ultrasounds can only show part of the picture)
• From a clinical exam, no spread to lymph nodes (but since I haven’t had surgery yet, this is what doctors can tell from the poking and prodding)
• Hormone receptors: ER+/PR-/HER- (Why this matters: receptors can act like triggers, so in my case estrogen (ER) can operate almost as a “fuel” for malignant cell division. This information helps to inform long term treatment, such as hormone blockers in the future, post chemo and surgery, to prevent recurrence). I also recall being told that ER+ cancer is one of the most common types and tends to be less aggressive than HER+ cancer.