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.

TLDR: Friends are really awesome.

Thank you to everyone who has sent me messages, good thoughts, offers of help, jokes, memes, ridiculous videos and pictures of adorable babies in Halloween costumes! I feel totally ensconced in, as my friend A. puts it, a “forcefield” of love, friendship, and support. (Confession: I had to look up what preposition followed “ensconced” and originally thought it was “by.”) Truly, I am overwhelmed by the abundance of care and concern, people checking-in and reaching out… with this safety net, it feels like I can do anything!

I also loved sifting through the range of responses, each one so emblematic of the person writing. Some choice excerpts (yes, friends, copied from your e-mails without permission):

“Well, shit. That’s among the Least Awesome News, isn’t it? I guess even if I had something fantastically helpful and relevant to say, I wouldn’t be able to capture it during a (what’s become an epically long) bathroom break from work, so I’ll just say that I’m here if you need anything up to and including a compact sedan, I will be in town around Christmas and we should absolutely hang out…”

“Can I come with you to one of your scheduled treatments? I can bring games and maybe party hats. It can be a get rid of cancer party.”

“Lovely email. Lovely picture. How chilly was it? All 3 runners in the picture have layers on!” (Note: I didn’t notice there were 3 runners in the picture, and had to re-examine the photo.)

“Hey Amy, I’m more of an ass type of guy anyways.” (It’s ok, this guy’s not actually a misogynist, only plays one on e-mail.)

“Greetings from Beijing where we are on another stretch of blue sky days. 6 in a row now. Will see if it can go a whole week tomorrow. You are quite right, I have no idea what to say in response to your news, other than fuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuck.”

“We are sad and mad. But plan to join you in good spirits soon.”

And of course, there were so many e-mails that buttered me up, I couldn’t stop blushing! (Aww, shucks, y’all didn’t have to say all that just ‘cos I have cancer!)

Getting a diversity of responses was  surprisingly helpful, in that the variety of reactions reminded me that it’s ok and possible to feel many different ways about having the disease. For me, from the very beginning, fear, sadness, and confusion, have probably been the most pervasive feelings. From there, a dark humor quickly set in as a way to cope. Interestingly, I don’t think I’ve felt any anger yet, but appreciate that others can feel it for me– perhaps need others to feel it for me.

I’ve been contemplating why anger is absent from my repertoire of response for the cancer, and think perhaps it’s related to the sense of decorum that I can’t quite shake off. I think I try diligently to “do right,” and that extends to being a patient. Last Wednesday, when I went into the clinic for my first chemotherapy treatment, I became extremely flustered when the nurse put in my IV catheter. It was nothing more than a pinch, but the emotions of crossing into the threshold of becoming a cancer patient became overwhelming. As my heart raced and I started sweating and tearing up, the nurse asked if I was all right, to which I responded, “I’m sorry, I just want to be a good patient.” I didn’t want to be demanding or fussy. I just wanted to sit in the chair, do it the right way, and not make trouble. Of course, the nurse was entirely understanding. Afterwards, I wondered to myself, “why the need to be so conscientious all the time?” Which brings me back to your responses… I am so grateful that everyone has reacted in their own way so that I am reminded there is no one right way to be in this situation, and can be released from my obsession with diligence.

I’m more sure than ever that healing is an act of community. Thank you, friends, to each and everyone of you, in helping me pave the road forward to recovery.

If you’ve found your way to this blog, there’s a good chance you know me personally! And if that’s the case, then you’ve already seen the text below, which is the announcement e-mail about my cancer diagnosis. I’m pasting it here as part of my documentation process so that in a year, after the chemo and after the surgery, I’ll have a full view of things. Why document? To be honest, I’m not sure. I’ve never been a particularly good diarist. I write in fits and starts, and I don’t think I’ve ever successfully filled a journal. But I suppose if there’s going to be a life-changing event that spurs reflection and contemplation, then this is it…

——————————

Subject: News. Not the awesome kind

Dear friends,

You might be confused as why to this e-mail address is being resurrected– mostly, this was the most expeditious e-mail to use with all the contacts of people I love in one place! I got some unwelcome news at the beginning of October, and it has been challenging for me to figure out how to best deliver it. So, since there’s no great way of easing into it, here goes: I’ve been diagnosed with Stage II (early stage) breast cancer.

I apologize for the impersonal feel of transmitting this news via mass e-mail, but it’s better than a facebook update, isn’t it?

If I were to receive such news from a friend, I know that I’d have a lot of questions, and 1) I wouldn’t know where to begin and 2) I wouldn’t know what I should or shouldn’t be asking. So, to mitigate all that, I want to say explicitly that no one should be afraid to ask the questions they want, because in the short time I’ve been dealing with this, I’ve learned that cancer is mysterious and complex and there is a lot to learn. There is also a lot of misinformation on the internet, and there’s also a lot that is still unknown about the disease. Breast cancer, in particular, is a hard case because there is no clear cause, unlike for example where the link between lung cancer and smoking is well-established (but it should be also noted there are cases of lung cancer that are wholly unrelated to anything and which happens spontaneously). In order to facilitate question asking, I’ve created a handy google form, through which you can ask questions about anything anonymously, and I’ll do my best to answer them… perhaps in a group e-mail or a blog (I’m still deciding on the right venue for capturing my thoughts.)

But here are the basics about what has led up to my sending this e-mail: in September, I had a cough (likely unrelated to the cancer) and I had a coughing fit. As I was clutching my chest, I suddenly felt a lump. While I am ordinarily someone who avoids going to the doctor as much as possible, the lump was big enough to be concerning, and it was just… weird. I decided to make a doctor’s appointment and thought perhaps it could be respiratory related since it was up relatively high on my chest, and almost to my sternum.

In the end, of course, making a medical appointment immediately was a good move on my part, and I am glad to report that my PCP (who I met for the first time at that appointment) took the mass seriously enough to then direct me to make an appointment for a mammogram and ultrasound for the next day. At that point, though, I wasn’t feeling that concerned since a breast cancer diagnosis seemed rather inconceivable. It wasn’t until the radiologist was reviewing the images with me that it became apparent that I was dealing with something that was possibly not benign. And even then, I wasn’t really thinking cancer until the radiologist sent me upstairs in the same clinic to speak to the PCP, and then I saw it on her face. The radiologist had taken a very even tone with me in describing what she saw on the imaging, but must have communicated something more serious to my doctor, because then my PCP explained that she had already called Brigham & Women’s hospital on my behalf to get me an appointment with the specialists there.  To fast forward, later results from a biopsy confirmed the diagnosis as invasive carcinoma.

“Invasive” is a very scary sounding word, but what I think I’m learning through this experience is that medical terms are just kind of blunt. At first glance, to me, “invasive” makes me think of these nasty cells dividing like crazy and overwhelming me, but it’s not like that. This cancer is “invasive” simply because it has the potential to grow and spread, but that’s what treatment is for—chemotherapy to arrest the growth, and surgery later to remove the tumor. (On another note, I appreciate the direct language in my medical record where my oncologist noted from the physical exam that I am a “well-nourished and well-developed female.” See, if this were another context, then I might wonder what “well-nourished” was connoting…)

If you’ve seen me in the last month and a half, you might be thinking, “what?!? I didn’t see any signs of this! (She looks well nourished!)” and you’re right, because there are no outward manifestations of my cancer, at this point. The strangest part about writing this e-mail now is actually publicly declaring that I have a disease, but, I actually don’t feel sick at all! In fact, I feel perhaps at the height of my health, and I’m proud to report that just over a week ago, I completed my first ever marathon! Pradeep and I ran the Mt. Desert Island Marathon up in Maine (near Acadia National Park) and it was just the victory I needed. The day was cold, the course was crazy hilly, and I came in towards the back of the pack, but the fall colors were spectacular, my greatest champion was beside me the whole time, and my mom was at the finish line, so what else could I ask for?

You might be wondering, what can I do? To tell you the truth, I’m not sure! I’m in good spirits, I have plenty to read, and Pradeep and I are moving in with my family soon (which was planned long before this medical development). One of the great privileges of living in Boston and having exceptional health insurance through my school is that I have access to top-notch medical care, so there are few concerns there. And of course, I know that I have all of you, near and far, in my corner.

I start chemotherapy tomorrow. That will continue over the course of 4 months (IV infusions once every 2 weeks). It’s, admittedly, a bit terrifying, but that’s mostly because I simply have no experience with this. So… I’ll keep you all posted!

With love and cheer,

Amy