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."