New year, still the same me.

 It has been two years since my last confession.

Throughout my cancer journey, this space has been an outlet for me to share what I am feeling or thinking in the moment. For 10 years, my lyrical prose has walked hand-in-hand with my husband’s more clinical reports: a kite flapping in the wind, the string held down by the steady anchor that is Godfrey.

And yet…

And yet, I struggle to find the words now. I have experienced writer’s block before, but this is more than just a simple blank screen-inspired barrier. This is more. I was talking to my writing mentor about my issues with writer’s block, and he said that perhaps a good place to start would be by being honest with myself and with you.

And so, here I am, writing about not being able to write.

I am stuck on what feels like a rock face, trapped between past and future, the perils I have overcome and the ones that lie before me. As the latter grow more clear—perversely embedded in the wonder drug that has allowed me to climb so high—my perch has felt ever more dizzying and disorienting, but I cannot seem to move.

I started writing this months ago, as we were ringing in the new year. Now that spring is approaching, I suddenly am struck by the passage of time. It is an everyday occurrence, but still I am surprised by how quickly time goes by. My routine is measured in days and weeks, not years, and yet, 10 years have come and gone. We spend so much without even realizing it.

One of the reasons why it has been difficult for me to convey my thoughts and feelings is because I am conflicted whenever a new year rolls around.

Actually, conflicted is not the right word. I am downright bitter.

On the one hand, the new year is a time of celebration—we gather and party with loved ones, we sing “Auld Lang Syne” and cheer a fresh start, and we form resolutions to make this year better than the one before it.

On the other hand, the new year is a time of reflection—we look back on the previous year and regret the things we were unable to accomplish, we think about people we lost, and we ruminate on challenges we know we must face in the coming year.

I lost the yin and yang of the new year when I was first diagnosed with cancer in December 2014, around my 30th birthday. It was very difficult to be celebratory on January 1, 2015, when I felt my life was essentially over. And, when it came time to come up with a new year’s resolution, all I could think of was one thing:

“Beat Cancer.”

In a way, cancer stole my annual resolutions after that. As people were thinking about changing diets or fitness routines, or pursuing promotions, or being better parents and siblings, all I could think about was beating terminal cancer. I resented cancer for taking over my life. With the passing of every year, I felt it had stolen more from me, and here it was sapping even my power of resolution.

Change, and the uncertainty and apprehension that come with it, is inevitable. If I am being honest, I think about what lies in front of me this year—medical complications and the great unknown they inescapably heighten—and I am scared.

Hence my inability to write, resulting in two years of silence.

I am reminded of Ulysses (also known as Odysseus in Greek), the mythical hero of Homer’s Odyssey. Ulysses embarks on numerous adventures throughout his journey home from war, encountering a host of trials and obstacles while still traumatized by the violence and loss that comes with battle. But he persists in the face of danger, resilient and brave, returning home even more victorious than when his journey began.

Odyssey has come to mean “a long wandering or voyage usually marked by many changes of fortune.” I have endured a cancer odyssey for a decade and, like Ulysses, am encountering a trial, an obstacle, that most likely will change my current trajectory. It is in these moments that I tell myself setbacks are opportunities to practice resilience.

To be even more victorious than when my journey began.

In Alfred, Lord Tennyson’s epic poem, “Ulysses” (which is the inspiration behind the title of my blog), he imagines the titular hero speaking to his trusty mariners in their shared old age, affirming his intention to “drink / Life to the lees”—to the fullest. It is a stirring pep talk in stanza form, and the message feels more relevant to me now than ever before.

During these past 10 years, I have been placed on a pedestal built from hope and miracles. I have felt guilt in my survival, that I have lived when so many others have been lost. I am a battered and weathered soul in need of a stirring pep talk, preferably in stanza form.

“Come, my friends, / ’T is not too late to seek a newer world.”

Tennyson’s “Ulysses” reminds me that what I do in life cannot be done alone. No matter how much this cancer takes from me, no matter how altered my future becomes, my support system gives back tenfold. Even the mythical hero Ulysses received help from his men and from various gods—Hermes and Athena come to mind—during his odyssey.

I know that my odyssey is an inspiration to many, so I feel pressure to do it all by myself, to get unstuck from the crag on which I am currently trapped. But it is okay to be fragile and vulnerable; it is okay to ask for and to receive support from others. I had writer’s block, and I asked for advice. Sometimes it takes a helping hand—say, a caregiving spouse or a writing mentor—to continue one’s climb.

“To strive, to seek, to find, and not to yield.”

For someone who does not know what to write, I sure have written quite a bit—more than usual. Funny how things work out like that.

Back to reality.

 I'm trying to figure out the best way to talk through what has been going on with me, but I confess it's tough.

The only way I can describe how I was feeling in the last month is thus: In The Phantom Tollbooth - which, if you haven't read this book, I highly recommend it! - the protagonist, Milo, finds himself in a dark, hazy place called the Doldrums, "where nothing ever happens and nothing ever changes." There, he sits in a state of apathy, with no desire to do anything or even think, and he loses track of time and space. He is only able to push through the fog thanks to an alarm-clock dog named Tock - a literal wake-up call (seriously, this book is a gem!). 

As a kid, the Doldrums seemed like a scary place to me, and only as an adult did I realize that the word doldrum meant "a state or period of inactivity, stagnation, or depression" - which explains so much about the Doldrums world in the book, and why my younger self thought it was scary.

Friends: if you've noticed my absence in my blog and elsewhere since April 1, it's because I have been in the Doldrums.

I've been in this dark space before, which is how I could identify this uncomfortable state of being. That's what makes the Doldrums such a scary, dreadful place. It stays with you even after you've left, hovering in the periphery, waiting. And then gradually it creeps up on you when you've least expected, until you're engulfed in shadow and look around to think, "Where am I?" before all sense of reality disappears into the void.

My life is uncertain these days - well, I suppose it's been uncertain for the last 7 years, but that uncertainty has been more overwhelming this past month. In January, I had already come to terms with doing the chemo again and hoped it would be somewhat resolved by now, only to find that a complication had found its way in. And as much as I relished the break from chemo - because it's been really challenging to navigate - there were new factors to consider (steroids, bleh) and, frankly, I was annoyed to have *one more thing* to worry about. But it's difficult to put those feelings into words. Especially when it seems like people don't want to hear about the bad stuff, and I only want to share good, uplifting material that makes me look brave and strong. 

The reality is: I am just as weak and fallible as the next person, maybe more so.

To say that I like to plan is an understatement. Anyone who knows me knows that I am the uber-planner. I take everything (and everyone) into consideration when coordinating a trip, event, or activity. My husband jokingly calls me Dr. Strange because he says I can see multiple timelines at once and can plan based on the most optimal timeline. So then, the uncertainty of all this has put me into a mild state of panic, not one that gives a physical attack but rather one that short-circuits my brain where I lose all timelines and don't know how to proceed. It's like coming to a crossroads and agonizing over which path to take. 

But I trudge through each day with a smile plastered on my face, silently suffering and mentally spiraling, just trying to muster the energy to continue on like nothing's wrong. Or, I find I can't fake it anymore and it's easier to just be silent for a while.

The other day, I was talking with a friend about my struggles this past month - about how it was hard for me to feel present when so much of my life was uncertain - and she brought up the idea of control (and loss of it). It's true that I'm someone who likes to be in control of my life, my surroundings, my activities. I'm a creature of habit, and I like things to be a particular way without much room for deviation. When something doesn't go according to what I had envisioned, then I feel lost in the Doldrums and frustrated that I can't get out. 

Depression and anxiety have weighed me down for many years, like pulling a two-headed animal by the leash that gets bigger and heavier as I get older. They trade off - some days Anxiety makes me manic and hyper-focused on the most mundane things, stress and fear overriding any sense of rational thought. And then Depression takes over, slowly rolling in like a wave, and my bed is my fortress where I forget who I am and what day it is and all the responsibilities that come with it. I'm grateful that my version of Tock the alarm-clock dog comes in the form of my husband, who rallies me when possible - but it doesn't always work, and in those times it's up to me to escape the Doldrums myself.

How do I do it? Sometimes the motivation comes in the form of family or friends or work or an alarm-clock dog. Sometimes it's reminding myself that life is worth living. Sometimes it's letting go of my need to control every minute detail. Yesterday, it was good news that eventually got me through. 

Positive moments are a great indication that life isn't always terrible.

It would be a disservice to pretend that the Doldrums don't exist - and, yes, let's not forget that it is a scary place. But, there is a way out. Even acknowledging where I am and that I need to get out is a good first step. I don't want to get trapped in this state of inactivity, stagnation, or depression. I worry that I'm letting life pass me by, and it's enough to keep me moving forward. But I also have to remember to give myself time to push through the fog as best I can. It might take a day, maybe a month, maybe longer than that. And there may come a time when I find myself back in there again. I'll be afraid, and that's okay. It means one more thing to overcome, one less thing to worry about. 

As someone famous once said: Bravery is not the absence of fear, it's overcoming the fears you have. The perspectives I've gained from these experiences have taught me that although I may be weak and fallible at times, I also can be brave and strong. I can contain multitudes. 

And while there are some things I just can't plan, at least I can plan on believing in myself.

Living is harder.

I was watching Hamilton for the umpteenth time, and found myself mulling over a line from one of the songs: "Dying is easy, living is harder."

Friends, I don't have to tell you that living is hard. With cancer, a pandemic, racial divides, war, so many other trials - and the turmoil that comes with all of it - it's very hard, indeed. With the stress, the anxiety, the depression, the trauma... It's an understatement that life can be very, very difficult. A friend once said that it's like driving with the parking breaks on. Aren't we all just muddling through, stalled at an intersection and trying to figure out the next step, the next chapter, the next journey?

In some ways, death feels like the easy way out. And yet, as challenging as life can be, we push onward. Mainly because we have to, but also because we want to. 

People have been apologizing to me because they complain about their lives but then feel like they need to trivialize their issues when compared to mine. I tell everyone the same thing: it's all relative. Perspectives adjust. Your pain is your pain regardless of what I'm going through. There are times when I feel very sorry for myself, but then I take a step back and see lives being ripped apart by war - and suddenly, hair loss and nausea and hot flashes and insomnia don't seem like such a big deal anymore.

But it's all relative, right?

I won't tell you how to live your life, because, frankly, it's none of my business. Everyone has their own stuff to deal with in their own time. But being on the precipice of death means I get to see all of the privileges that life has to offer. And I will say that, for me (and this extends to my "four-group family" as my son calls us Millers), I plan to reroute my life a little differently now, where possible: 

I want to be kinder to myself. I want to give myself a break when I need it. I want to let myself be brave when I feel the courage. I want to remind myself that I am not entitled to a "good life" just because I feel like I deserve one.

Life can be tough, but also really rewarding. And while I may have been dealt what some might consider a "losing hand" that makes living infinitely harder, it's up to me to make these changes for myself - to decide which way to go as I navigate through a hard life towards some semblance of happiness. 

Happiness. What can be more rewarding than that?

And so it begins.

 My hair is falling out.

I run my hands through my hair
and come away with pieces of myself.

Like pine needles from a dying Christmas tree.
Like petals from a shrinking orchid.
Like pulled spears of summer grass.

Except.

This is part of me:
Memories, skin cells, identity.

All that was left of
countless knots and tangles;
hours of brushing;
fingers through the tresses;
ponytails, braids, dancer buns.

My husband says don't touch,
which reminds my hands to drift to my scalp.
Check if it's all still there.
A losing battle between physical and mental.

My mom says to think of it as thinning.
My hair was thick enough before.
A few lost strands here or there
won't make too much of a difference.

I wear a hat
to cover, to protect, to pretend
like everything is okay.

Even though, as each follicle of hair dies,
I die a little more inside.

FAQs.

Hello friends,

As many of you know, yesterday was my first treatment of chemo in a long time. I have been fielding so many questions that I felt the easiest way to respond to them all would be to put together a list of my answers - this way I also can keep track of what's going on with me during this journey.

How was your first day?

Surreal. I knew that the only way I was going to get over this was to pretend like it was any other infusion day.

For those who are new to the group, I have been living with stage 4 breast cancer since December 2014. I was diagnosed around my 30th birthday. After 6 months (8 treatments) of chemo and immunotherapy in 2015, I have been solely on immunotherapy treatment since then - until yesterday.

From start to finish, everything took about 4 hours. This included: blood work, doctor's appt, pre-meds (steroids, Benadryl, anti-nausea meds), chemo, and observation. Godfrey was allowed in with me to see the doctor, but due to current covid restrictions he wasn't allowed in to the infusion facility with me. He was not happy about this.

It went pretty smoothly otherwise. I basically slept the whole time, even though I was trying to stay awake by texting Godfrey and some friends - I guess my body needed the rest. One challenge I find is drinking water, because they are so careful about making sure you have your mask on at all times. I'll have to find my stash of silicone straws and bring a few with me next time.

Afterward, I ate pho because I read that the spices in the broth (such as ginger and licorice) can help combat nausea. It was glorious.

How are you feeling?

As with previous blog posts from 7 years ago, it might be best for me to list my current side effects.

Yesterday, I felt:
- EXTREME fatigue
- Pounding headache (which I felt only in my temples)
- Body aches (not sure if it's muscle or bone, or both)

I have been warned about other side effects, but didn't experience any of them on Day 1. Today, my aches are not as bad, but I am feeling slightly nauseous (I have anti-nausea meds for this) and my headache has spread from just my temples to both my temples and my jaw. As a result, it hurts to chew.

For now, I will say this - as tired and achy as I feel, I am grateful that this is all I'm feeling at the moment. If this is how it's going to be, and could potentially be for the rest of my life, then I will gladly take it if that means I get to live a little longer.

What are you able to eat?

As a precaution, I plan to avoid eating raw foods (salad, deli meat, sushi, etc.) until I know more about my white blood count. 

Due to the nausea, which I can only imagine is going to get worse, I'm going to try avoiding heavily acidic foods for the time being (foods containing large quantities of tomatoes, onion, garlic, citrus fruits - though I had a small amount of lemon juice with my tea and it was ok), foods with a lot of milk or cream, and spicy foods. This list might grow as I experiment with food over the coming weeks and months. Due to the pain in my jaw, I'm sticking to softer foods for now until I can chew without wincing.

Are you still working full-time while on treatment?

Yes, for the time being. I basically worked full-time during chemo the last time too, as much as I could. I find that working is a really great distraction - otherwise, I feel like a sick person. I get trapped in my head, like a prisoner in my own mind. It's not a good feeling, and I'm hoping to get through it without having to take meds again. (Nothing wrong with taking psych meds, I just don't like how I feel when I'm on them.)

Working helps me to feel "normal" (whatever that means), and I like to be helpful and productive. And I am grateful that, in a post-covid world, there are options for remote or hybrid work in my current job - this wasn't really available to me in 2015. 

Are you folding cranes again / How many cranes have you folded so far?

You know, whoever said that you won't need math in everyday life has never made 1,000 cranes by themselves.

It takes an incredible amount of coordinating and planning and, yes, math. You consider the timing - how many to make in a day, a week, a month. How long it will take if you make, say, 10 per day. You judge paper dimensions and find yourself asking questions like, "Will 200 fit in a bag, or is 10 bags of 100 more manageable?" After making 70 cranes, I actually said to my husband, "I'm about two-thirds of the way through ten percent." I'm speaking in fractions and decimals now.

And then, there's choosing the artistry of the paper itself - size, quality, color, design. How well it all fits together. Last time I bought various packs that were different sizes and types to create a more haphazard yet still purposeful design (meaning, it looked random but I made sure there were equal numbers of every style so that there was some uniformity). It seemed more organic, almost like many hands made it as opposed to just one person.

And why make 1,000 cranes, you ask? Part of it is because I enjoy making them. Part of it is because I have time on my hands and need something to do. But mostly it's because I'm superstitious. I subscribe to the Japanese belief that 1,000 cranes equals a wish granted. And I will take whatever I can get at this point.

This is my second time making 1,000 cranes by myself. The first set was strung up 7 years ago like a cascading waterfall of colorful paper birds, and is now collecting dust in my closet. Feels like there is a message or takeaway hidden somewhere in that waterfall of birds - I just haven't found it yet. For now, it's just an art installation that I happened to make. 

I'm trying to remember the lessons from the process last time, but it's so hard to remember what I did this morning let alone what I did with 1,000 cranes all those years ago. What I do remember is how long it took to make, and I've tried to find ways to cut down the time a little. Time is precious, after all - who wants to spend it on making paper cranes? Instead of spending weeks scouring the internet for different types of paper, I just bought a set of 1,000 papers because I figure I won't have to spend too much time counting if I already know I'm starting with 1,000 to begin with. I also bought smaller paper this time, and I can already see a difference in how quickly I can make one crane. I also won't be stringing them up this time - instead, they will go in a mason jar, like paper candy.

I started in early January, and I'm now already halfway through. 500 cranes! I guess part of that also has to do with muscle memory - I don't even think about it anymore, I take a piece of paper and within minutes it becomes a bird. Like magic. It's to the point where I'm dreaming about folding paper cranes.

Another interesting development this time around is that I learned that my daughter Freya has been making cranes on her own - she's made about 400 so far, I think. At first, she offered to combine them together so that we'd almost be finished by now. But, anyone who knows me knows that I can't pass up a good competition, even if it's with my own child. So, I find myself in a crane battle with a 12yo girl to see who finishes first. It keeps me motivated, to say the least.

How are Godfrey and the kids?

This one is the hardest for me to answer, because I don't want to speak for them and, honestly, I just don't know. I can only say what I see.

The kids are doing the best they can, and they are adjusting depending on their needs. For instance, Freya had a major National History Day project due this month that I told her she could skip if she needed. I spoke with her teacher, who knows about my situation, and he was so kind and understanding. Due to that flexibility, Freya was motivated to continue the project ungraded, so that she has more time and can do it at her own pace. Gareth dresses himself and makes his own lunch before heading off to school. I used to put clothes out for him and make his lunch, but he wanted to assume those duties so that I wouldn't have to do it for him. He also has taken advantage of seeing his counselor at school, which helps him to manage his thoughts and feelings outside of the home. Both kids have been more clingy, requiring more "cuddle time" - but I'm not mad about that at all.

Godfrey. He probably doesn't want people knowing, because he strips any emotion from whatever he shares outwardly. But, friends, I worry about Godfrey. He tries so hard to keep it together, but I see him struggling to maintain his composure when he thinks I'm not looking. I ask him point-blank: Are you nervous? Yes. Are you worried? Yes. Are you anxious? Yes. Are you sad? A little. He gets frustrated so easily these days. He looks at me like I'm going to disappear into dust at any moment. He does copious amounts of research, attends every medical visit ready to take detailed notes and ask probing questions, handles bus pick-up and drop-off, helps with homework, feeds the kids, takes care of me - all the while working a full-time job and getting stellar performance reviews. He is the best caregiver and partner, and despite his protestations I worry about him more than I worry about the children.

What is the most appropriate thing to say?

The most helpful things I've heard from people are sentiments that let me know that you care or are thinking of my family and me. Yes, it is a really difficult and challenging time. Thank you for acknowledging that. Other helpful comments (in no particular order): This sucks. I like your hair. F*** cancer. 

Friends, cancer is the WORST. No shame in saying it if that's what you feel.

I also appreciate when people say things like: "You're brave," "You're strong," or "You can do this!" or "You've beaten it before, you can do it again!" - most of the time. Then, there are times when I am not receptive to these kinds of comments. Despite what my kids say, and what many of you might think, I am not superhuman - there are moments where I am scared and vulnerable. In those times, I feel like these comments put a great deal of pressure on me to do something I might not be able to do this time. My initial reaction is: But I'm not brave, I'm afraid. I'm not strong, I feel so weak. What if I can't do this? What if I fail?

I should add that saying "sorry" isn't all that necessary - unless you gave the cancer to me, you don't need to apologize. In my mind, apologies are intended as a way of asking for forgiveness. I get that people tend to want to say sorry that I'm in this general situation or sorry that my family has to go through this endeavor, but I don't really know how to respond to verbal crutches like that. Um... thank you? 

And if I am being honest - and I'm going to do it, so brace yourself - at this moment in my life, comments like "God has a plan" or "God gives challenges to people who can handle it" are not helpful. I know the people who have said it are people who care about me and mean it with the utmost love, support, and friendship - but I have to be real. I am someone who struggles with God's existence. It's hard to feel "God's love" when every day could be my last. If I were truly to believe that "God has a plan," then that means He put me in this position. And that makes me resentful. I have been through A LOT, more than the average person, more than a handful of people COMBINED. Comments like that push me further away from God, because all it does is make me think that that after everything I've been through, I now have to take on more because some higher being thinks I can "handle it" - regardless of what I want or how I feel, regardless of how much it HURTS the people I love. 

I can't completely dismiss God altogether, so I'm not telling people to stop sharing religious sentiments - again, I know the good intent behind them, and in other circumstances I tend to agree and believe them to be true. I know miracles happen every day, as I myself am a living embodiment of a miracle. My very religious son makes our family pray together every night. I want people to be free to say what they want.  All I'm saying is what I think when I hear these types of comments. And I might not respond to them, because I am a human being and I get mad.

What can I do / What do you need?

This morning I checked the Meal Train link for the first time in a while. Holy moly. My friend Allison, who created the link, says that whenever she adds new dates they fill up in 20 minutes. You guys are amazing.

The Meal Train has helped a lot, as there are days when I just can't. On those days, it helps to know that my family can eat. Thank you to everyone who has participated so far and who has signed up for future dates.

Thank you also to everyone who have been sending gifts (monetary gifts, gift cards, gifts to me or the kids). Especially for the kids - who doesn't love getting presents in the mail at a time other than Christmas or their birthdays? As a stellar gift-giver myself, I recognize that giving a gift takes time, effort, and money - I equally recognize that these are precious commodities in short supply for everyone. I cannot stress enough that we are not asking for anything specific at this time, but still, I did want to recognize kindness and generosity where I see it. 

I also wanted to give a shout-out to my friends who have been available to listen when I needed it most. I don't subscribe to therapy, primarily because every therapist I have seen so far has not been the right fit for me. Support groups also haven't worked so well in the past, as the majority of the breast cancer ones support women of a certain age who don't work anymore and their children (if they have any) are fully grown. I just can't relate to that. My husband does his best, and there are a few friends who have heard my rants and have taken them with the utmost care. And then there are friends who know what I'm going through because they've been there before or are going through it now. The 1:1 sharing of experiences can be the best form of therapy, and it helps me become closer to them as someone who can support in addition to being supported. 

And, hmmm, what do I need right now. I will say this: I need joy. I am tired of feeling pain and sadness and frustration and anger. Don't get me wrong, there is plenty of joy in my life already - between my husband and kids, and family, friends, and colleagues, and origami cranes - but I can always use more. 

For example: My sister sent me a thoughtful care package, including a paperback copy of one of her favorite books. Several others have done this, as well - last time and this time. One friend recently sent me so much beautifully crafted origami that it put my origami TO SHAME (given my wealth of pride, it takes a great deal to admit this).

But you don't have to necessarily spend money and send stuff to me. One friend recommended a new local restaurant that they liked, which turned out to be delicious. Another friend texts me music recommendations almost daily. And yet another friend Facebook messages me pictures of fun and interesting things that make them happy.

Good thoughts and well wishes and moments of happiness are the best forms of currency. I'm grateful for it all.

So, friends, tell me: What brings you joy? Feel free to share it in whatever way makes you the most comfortable.

And finally...

What do people at the hospital call Godfrey?

Mr. Baughman
* Note: My maiden (legal) name is Baughman.

Does he correct them?

No.

Why not?

Per Godfrey, "If they're calling me Mr. Baughman, then that means they've correctly identified me as Nari's husband. That's all I really need them to know. I don't need them to know my titles or my real last name or my whole life story. Just the fact that I'm Nari Baughman's husband is enough for me."

When all other lights go out.

I wasn't going to write anything until after the new year, but I'm hopped up on steroids so I figure... now's as good a time as any. Please excuse my early morning ramblings and potential misspellings and grammatical errors and incorrect verb tenses.

I confess that for weeks now I have been kind of drifting in this doldrum state, not sure where to go or what to do or how to feel. I drafted posts for a while, but I've been deleting them because, to be honest, the general tone has been somewhat aggressive and I wasn't sure how well it would be received publicly. Last time, I was desperate, afraid of the unknown, unsure if I would make it. This time, I'm just pissed off.

But the outpouring of warm wishes and good vibes feels like when Galadriel gives Frodo the star of Earendil in the Fellowship of the Ring - Tolkien writes, "It will shine still brighter when night is about you. May it be a light to you in dark places, when all other lights go out." A light shone in the darkness of my soul when all other lights went out. I am deeply overwhelmed.

I especially am grateful to those who have offered food or gift cards, who have sent cards and gifts to either me or the children, who have been with me every step of the way. Kindness is contagious - I hope to repay you or pay it forward when I can.

Today I cut my hair, and my husband and children decided to cut their hair in solidarity. A friend of mine said, "That's very on brand for your family." Yes, it's true: we Millers are notorious for never splitting the party.

In total, we are donating about 72 inches of hair - 26 of that is from me alone. My son was the last to agree to cut his hair, as he was afraid to lose his special powers that his long hair gives him. I reminded him that all of his powers are within him regardless of hair length - and, at the very least, it will grow back. 

I am still getting used to my very, very short hair. Logically I know I look fine, but emotionally I am mourning a very dear friend who has been with me for these past 7 years. It sounds silly to say that about hair, but it's the truth. Perhaps I will share my appearance publicly at a later time when I am able to recognize myself in the mirror.

Tomorrow I will be in the hospital all day undergoing a CT scan and a full-body bone scan. Next week I begin chemo, and then I will be undergoing a brain MRI. Before, it was weeks of silence - now, I feel like I'm on the phone every day with doctors, hospitals, central scheduling. I get whiplash from it all, and it's hard to manage it all myself. At one point, there was an issue with the scheduling, and Godfrey was in the hospital on Christmas Eve trying to sort it out.

Anyway, back to the scans tomorrow - which explains why I'm taking steroids (they are pre-meds for the scans) and what inspired me to write this post. God, I am so long-winded, feel free to step away if you need a break. 

THE POINT IS / TLDR: I can't sleep when I'm on steroids, so I'm usually watching something like Raiders of the Lost Ark while binging on ramen and junk food and trying to make sense of my scattered, raging thoughts that are attacking my brain at a thousand miles a minute. Godfrey always wants to stay up with me to keep me company, but I have to gently and firmly remind him that he needs to sleep because caregivers need to care for themselves first and foremost. 

It's almost midnight, the kids are asleep, and I'm trying to figure out how to pass the time - when in walks my daughter, Freya. She takes my phone and downloads some Animal Crossing app, and says, "Let's play this together." She picks up her brand-new phone (a Christmas present) and downloads the same app. We play in tandem, comparing random characters, items, activities, goals. It's so silly, yet strangely bonding. I feel her body weighing into the couch, so I say that she can go back to bed.

She says: "You have stayed up with me during every one of those horrible sleep-deprived studies for my seizures, you were with me at every overnight hospital visit, you took care of me when I was sick more times than I can remember. Please, for once, let me do the same for you."

At around 2 am my son, Gareth, stumbles out of his bedroom and immediately thinks we were having a party without him (his worst fear). Freya explains what we are doing and her intentions to keep me company. Gareth replies, "Freya, you go to bed. I'll take the next shift." To me, he says, "Don't worry, I won't get tired. I've taken a few naps." He opens up his brand-new laptop (a Christmas present) and starts watching YouTube videos, quietly giggling to himself. 

As I tuck Freya into bed, she apologizes for not staying up longer - I find myself on repeat: she needs to sleep because caregivers need to care for themselves first and foremost.

Soon it will be 4:30 am, and I will be taking my next dose of steroids and then sending my son back to bed before I try to get some coveted sleep myself - highly unlikely, but it's worth a try. My fast will begin at 6:30 am, so I don't have much time to eat. And my heart is racing in my ears. Ah, what a dilemma. 

Before posting, I took a quick glance at the Facebook group membership and it is the literal definition of "running the gamut." Some of you are my relatives, some are related not by blood but by spirit and love. Some are old friends, long-lost friends, school friends, family friends. Some are colleagues whom I see every day, some are colleagues whom I've only met virtually. Some are complete strangers.

We are all connected in this very interesting virtual space for a sad and tragic purpose - but if there's one thing I've learned from living with stage 4 cancer these past 7 years, it's that there is strength in community. 

I feel that strength when I need it most, a light when all other lights have gone out, and I thank you all for giving it to me.

Bringing awareness.

Let me tell you a story.

Actually, my story (like many stories) begins with someone else's story. I won't go too much into detail, since it's really not my story to tell, but I feel like it needs to be included as a prologue of sorts.

Once upon a time, not so long ago, there lived a woman who was good and moral and kind. Some of you may know to whom I'm referring. She was a lot like me, in many respects (except, you know, I'm not quite as good and moral and kind). She was young, married, a mother, and basically did everything right. But, one day, she was unfortunately diagnosed with stage four breast cancer. Here is where our stories diverge, because while I was lucky enough to "beat" this disease, her story sadly ends with her tragic, untimely passing.

I mention this woman because, again, it wouldn't be possible for my story to begin without her. Before, I thought breast cancer was this invisible disease that only afflicted women of a certain age. I didn't know anyone who was currently or previously had been diagnosed with it. I certainly didn't know anyone who died from it. But then it happened to someone I knew, who was very young like me, a mother like me, someone who was least deserving of such a horrible fate. And while I could only mourn for her and her family's loss from afar, I also realized:

If it could happen to her, it could also happen to me.

It was the wake-up call I didn't know I needed. I started checking for lumps religiously after that, every time I showered in the morning, as I changed into pajamas at night, sometimes randomly during the day. I felt a little silly sometimes, because I felt so young worrying about something like breast cancer (I mean, a woman my age is still not legally allowed to get a mammogram), especially since I don't have a history of that particular cancer in my family. But I still did it anyway, feeling like I've "done my part" every time, even though I never found anything.

Then, four days before my 30th birthday to be exact, I found something. Something big. I immediately feared it was cancer. And even though I tried to rationalize otherwise, I knew in my heart that I was probably screwed. And my first thought (after "Oh !@#$") was to thank this aforementioned woman, who had passed away only a few years before. Because, whether she had intended to or not, she had just saved my life. If I hadn't known about her experience with breast cancer, I never would have bothered to check myself and would have been totally oblivious to that despicable tumor growing inside of me. I hate to say it, but it's true: I'd probably be dead right now if it weren't for her.

And here we are, in October, ten months after my initial diagnosis.

October is "Breast Cancer Awareness" month. I used to think this was stupid, like, who isn't "aware" of breast cancer? But now I see that Breast Cancer Awareness isn't about being "aware" of the disease - it's more about being "aware" that the disease could strike you or someone you love. Also, it's about celebrating all of the brave women (and men - looking to you, MM) who fought this particular disease and made it through with battle scars, as well as honoring those who were taken away from us. Kind of like Veteran's Day, but for breast cancer. And we must remember that those who are gone didn't "lose" the battle (I hate this win/lose nonsense); they fought just as hard and had just as much hope of survival, and even one woman getting a mammogram/ultrasound when they normally wouldn't means that their sacrifice wasn't in vain.

And now, for my requisite plug: Breast Cancer Awareness month is also about bringing awareness to the fact that although breast cancer research has come so far from where it was, say, ten or fifteen years ago, there is always something new on the horizon that could save even more people. My current immunotherapy treatment is a combination of one drug that has been around for fifteen or so years and another drug that only became available since September 2014 (so, it's fairly new). That drug was made possible by the trials, which was made possible by the research, which made possible by - you've guessed it - money.

More specifically, donations. But, while I'm sure the American Cancer Society and Susan G. Komen are both organizations that could benefit from your contributions, my humble suggestion is if you would like to donate to breast cancer research, please consider giving directly to your local hospital that researches and/or treats breast cancer (like Memorial Sloan-Kettering in NYC, or The Hospital at the University of Pennsylvania in Philadelphia, or the University Medical Center at Princeton-Plainsboro - just to name a few examples in my area). Sometimes it's easier to give to something with more concrete results, where there's tangible proof of your charity. I know I wouldn't be here today had it not been for so many other factors: my wonderful oncologist and amazing hospital, a particular combination of drugs, other people with breast cancer, the support of my family and all of you.

And though only time will tell whether I live "happily ever after" or not, at least, for now, I'm living.