Books: When Things Fall Apart by Pema Chodron (part 6)

Let's keep thinking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear, being vulnerable, embracing hope, letting go of control, and beautiful fleeting moments.

It seems overly cynical to say that life is about suffering, and yet, haven't we all suffered in life? Granted, some suffer more than others, but I think that suffering is a universal aspect of the human condition. We don't deserve to suffer, and still, we suffer.

I think that just as suffering is a universal aspect of the human condition, so is hope. Some (many) of us may be lifelong cynics who expect nothing but the worst in any particular situation, but even the most hardcore cynic among us feels that little spark of hope. We can't help it. I'll be the first to admit that my cynicism is tainted by a deep underlying hope that I'm wrong for being cynical.


The Venerable Pema Chodron says that:

"The first noble truth of the Buddha is that when we feel suffering, it doesn't mean that something is wrong [. . .] Suffering is part of life, and we don't have to feel it's happening because we personally made the wrong move. In reality, however, when we feel suffering, we think that something is wrong. As long as we're addicted to hope, we feel that we can tone our experience down or liven it up or change it somehow, and we continue to suffer a lot" (Chodron 39; emphasis original).

When I think of suffering and hope, I think of my own tendencies to run away from suffering. It is so easy to believe that suffering reveals the true nature of life, the universe, and everything.

Suffering is a universal truth.

How depressing is that? I hate to think about life this way, even as I've suffered particularly difficult trials in the past six months. The Venerable Pema Chodron says,

"Hope and fear come from feeling that we lack something; they come from a sense of poverty [. . .] We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what's going on, but that there's something missing in us, and therefore something is lacking in our world" (Chodron 40).

Chodron describes hope in such a negative way here, and I can't get behind that. To hold onto hope is to acknowledge that there is something missing, something wrong. Even if it is more in line with Buddhist teachings to abandon hope and accept that which is lacking in life, this feels counter-intuitive. Hope keeps us striving for a goal of some kind. I've mentioned before that I am not good at letting go of control. While I have felt a deep connection with the teachings in this book, here is where I struggle.

I struggle, and I hope.

I suffer, and I hope.

I hurt, and I hope.

Hope is painful, but the simple fact is that without hope, there is only suffering. I cannot suffer without feeling the respite of hope, no matter how far-fetched or unlikely that hope might be.

I cannot take that medication that makes me vomit without hoping that it is working valiantly and violently against my cancer.

I cannot suffer the pain in the hole in my skull without hoping that it means it is healing appropriately.

I cannot be poked and prodded, tested and scanned, examined and stared at, without hoping that someday, eventually, someone will find a cure for my incurable cancer before this takes me.

I breathe, and I hope.

Scanxiety

Today, my brains get scanned.

Next week-ish, I get to find out if the tumor grew or if it stayed the same. Remember, last time it was tiny. We want it to stay tiny. Tiny is good.

Waiting a week to find out if it is still tiny or not is a special kind of hell devised by cruel radiologists intent on torturing me*.

So, while I wait, if I am unresponsive to messages or particularly anti-social, please understand that I'm waiting to find out important news that affects the rest of my life. I am doing the best I can.





*I know that they are not actually trying to torture me, but it sure does feel like it.

Books: When Things Fall Apart by Pema Chodron (part 5)

Let's keep thinking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear, being vulnerable, embracing hope, and letting go of control. 

I've mentioned before that I felt like I deserved this condition. If this was meant to happen and everything happens for a reason, it's my own fault that I have this cancer, right. I mean, who else could I possibly blame for the Hell that has been the last five months?

The Venerable Pema Chodron says that there is a teaching that says "Drive all blames into oneself" (Chodron 81). Bearing in mind that she is not trying to encourage us to be scapegoats, instead, what she says is that

"pain comes from holding so tightly to having it our own way . . . It is a very common, ancient, well-perfected device for trying to feel better. Blame others. Blaming is a way to protect our hearts, to try to protect what is soft and open and tender in ourselves. Rather than own that pain, we scramble to find some comfortable ground" (Chodron 81-82).

As another tiny little scared blip in a world full of tiny little scared blips, I felt this like an arrow aimed right at my heart. I am not comfortable exposing my vulnerabilities. I am afraid to get hurt.  That fear is overwhelming because I've felt that pain, and I've squeezed so hard that I lost some ephemeral pieces of myself.

Ultimately, this comes back to the idea that I don't have to hold on so tightly. I am exposing myself "over and over to annihilation" and I am finding within me that which is indestructible (Chodron 8).

People tell me that I am brave and strong, but I am afraid. People look at me with surprise because apparently I don't look like I have cancer, but I feel like I have cancer. People seem uncomfortable when I make inappropriate and macabre jokes about my cancer, but I feel most comfortable when I am able to mock that which is trying to kill me.

Simply put,  the part of me that is indestructible is learning that this diagnosis does not have complete power over me.

Sometimes there is nothing I can do, and cancer takes over. Sometimes the ugly side rears up and I spend hours vomiting. Sometimes I am hyperaware that just a few months ago, I had two brain surgeries, and as far the doctors can see, I came out with only very minor cognitive deficits. Sometimes I get frustrated with a body that is weak from the process of recovery and a mind that occasionally struggles to communicate my thoughts because there are consequences to having a Rockstar Neurosurgeon digging around in your skull.

But there are these beautiful fleeting moments when I can forget that I'm the cancer lady. Dancing with The Husband in the kitchen. Playing with my goofy dog in the yard. Going out to a dinner where nobody there knows that I have cancer so I don't have to talk about cancer or think about cancer or be the cancer lady. Laughing at my dopey cats who try very hard to maintain their dignity even though they are clumsy and a little dumb. These beautiful fleeting moments make everything worth all of this.

Books: When Things Fall Apart by Pema Chodron (part 4)

Let's keep thinking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear, being vulnerable, and embracing hope.

In this highly consumerist society, we are inundated with commercials, billboards, and advertisements that tell us we are not thin enough, not pretty enough, not motivated enough, not feminine (or masculine) enough, not healthy enough, not good enough.

We all know that feeling; berating ourselves for not going to the gym even though that $50 membership fee is coming out every month. Feeling frustrated because we should be doing something productive, but there's a new season of Orange on Netflix and maybe now really is the best time to start watching Supernatural from the beginning, so maybe we will be productive enough tomorrow.

Tomorrow rolls around, and all that healthy food is in the fridge, but we would rather pick something up from some fast food restaurant because cooking takes too long, and it's boring, and we don't feel like washing the dishes. Tomorrow we have to cook that chicken we thawed before it starts to go bad, and those veggies are getting mushy and nobody wants to eat half-spoiled food, so let's just clean out the fridge and try again tomorrow.

Tomorrow we'll be motivated enough.

According to the Venerable Pema Chodron,

"It is said that we can't attain enlightenment, let alone feel contentment and joy, without seeing who we are and what we do, without seeing our patterns and our habits. This is called maitri—developing loving-kindness and an unconditional friendship with ourselves" (Chodron 26).

How many of us have that voice whispering just behind us that reminds us of all the ways we are not enough? I will be the first to admit that I am a Master of Negative-Self-Talk.

Would you ever tell your friend that she looks especially ugly today?

Of course not.

Yet too many of us bring exactly that kind of negativity and intolerance upon ourselves. What if we tried to be as protective to ourselves as we are towards our friends and family?

Interestingly enough, as I ponder these ideas, I realize that I am viewing this negative-self-talk as a problem that needs to be fixed. The Venerable Pema Chodron has this to say:

"What makes maitri such a different approach is that we are not trying to solve a problem. We are not striving to make pain go away . . . In fact, we are giving up control altogether and letting concepts and ideals fall apart" Chodron 26).

For me, one of the more difficult parts of being diagnosed with cancer is that so much of it is outside of my control. Because of this, I so frequently feel like I'm losing myself. The entire reason this is called More than My Diagnosis is that I was afraid of losing my identity to this disease. I hate the thought of being the Cancer Lady.

By trying to maintain complete control over this, I feel like I am grabbing a handful of sand that is the essence of me. I fill my hand with as much sand as I can hold, and then I squeeze my hand into a fist.

The tighter I squeeze my hand to hold onto my essence, the more grains of sand slip between my fingers. If my goal is to keep as much of myself as possible, I have to let my hand relax before I lose everything that is me.

With a diagnosis like this, and a personality like mine, do you know how hard it is to just relax and let go? I have learned that letting things fall as they may is hard. but only by relaxing and giving up control do I get to keep the most of what I am afraid of losing: myself.

Instead of squeezing, I need to find peace within myself; only then will I be able to hold on.

Books: When Things Fall Apart by Pema Chodron (part 3)

So let's continue talking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear and being vulnerable.

Generally speaking, we as a society are incredibly uncomfortable with being uncomfortable. Awkward silences. Wardrobe malfunctions. Putting your foot in your mouth. Bad news. Embarrassment. Trauma. Catastrophe. We spend so much time hoping that things will go according to plan, and so much time fearing that they won't.

The Venerable Pema Chodron says that:

"Hope and fear is a feeling with two sides. As long as there's one, there's always the other . . . This is the root of our pain " (Chodron 39).

Diagnosis Day is a day burned into my memory as the moment that every single piece of my life changed. It was the worst day of my life. I am 38 years old. This wasn't supposed to happen to me. As I sobbed hysterically that day, I realized that I didn't know I was so afraid of dying until that Rockstar Neurosurgeon said the words "cancer" and "aggressive" and "incurable".

I've mentioned the abstract bus that could hit any of us tomorrow, but as I sat in that office getting that diagnosis, I saw the bus. That Rockstar Neurosurgeon pulled aside a curtain to show me how close it was. It was right there. It is still right there.

Diagnosis Day shined a light on my deepest fears, but hidden deep underneath of that was the inkling of an idea that maybe, just maybe, Rockstar Neurosurgeon was wrong. I couldn't help but hope that he had misidentified that bus; maybe it was actually just a skateboard.

It is easy it see how fear is painful. For me, fear is a product of weakness exposed. I make it my business to put on a strong face. People see me around town and always look so surprised that I don't look like I'm dying. Maybe they think I'm making it up, because how could someone make jokes about cancer, or talk about other aspects of life besides cancer, or smile or laugh while having cancer?

I put on that strong face and I smile at my friends. I make small talk. I go out to dinner. I have birthday celebrations with friends.

This is my First Face. It is almost disturbingly easy to put on that strong First Face and laugh off any of the uncomfortable things I experience. People say things that hurt me, but I smile and laugh it off. People fail to respect my boundaries, and I grin and bear it because I don't want to make anyone else uncomfortable. People look to me for comfort because they feel sad that I have cancer, and I grit my teeth because it shouldn't be my job to make you feel better about your discomfort about my diagnosis.

So here is something from my Second Face. Those who only see my First Face don't get to see how fragile my Second Face really is. It is incredibly difficult to admit, even to my Second Face family, just how afraid I am. The fear is always there, because this diagnosis is terrifying, and Prozac can only help alleviate that fear so much.

That's where The Husband comes in: he is so helpful when it comes to mitigating that fear, which is so very important. Sometimes I don't think he realizes how important he is for me. Because he makes me feel safe to let go of that fear, even for just a few minutes, he allows me to embrace that tiny nugget of hope that lingers in the back of my mind.

Fear is painful, of course, but embracing that tiny nugget of hope is also painful. Anyone who has experienced betrayal, trauma, or regret knows how painful it can be to have that nugget of hope slip right between your fingers.

And of course, following right after it is the fear that the tiny nugget of hope will be lost forever. How much does hopelessness hurt?

The beautiful thing that I have discovered is that there are tiny nuggets of hope to be found everywhere around us, if only we are paying attention. It is far too easy give up and embrace the fear. It is so much more difficult to leave yourself open to the possibility of hope, even if that also leaves you open to the possibility of pain.

Books: When Things Fall Apart by Pema Chodron (part 2)

So let's continue talking about When Things Fall Apart. As a reminder, so far I've talked about embracing fear.

The Venerable Pema Chodron  references a sign pinned up on her wall that says:

"Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us" (Chodron 8).

I've never been good at vulnerability. Events that have happened in the past have led to me building a wall around my heart. There are very few people allowed past that wall.

I've always assumed that, because I have a wall around my heart, others have the same. I keep people at arm's length because I don't trust them to be mindful of my soft spots, and because I've unintentionally caused pain by not being mindful of others' soft spots. I've been so afraid of being hurt, of being vulnerable, or of hurting someone else, that I created a boogeyman in my mind to protect my soft spots and keep most everyone else at bay.

The thing is, having a wall around my heart that is guarded by that boogeyman leads to a lonely existence. I've mentioned the three faces before, and because of this blog, I have forced myself to show more of my Second Face than I would typically be comfortable showing. This process of self-discovery has been painful and humbling.

I didn't realize that my loneliness was my own doing.

With pain and humility, I have been slowly tearing down that wall. People have told me that I am so strong to go through this. So brave.

But when I think about it, I don't feel strength, and I certainly don't feel brave. Yet here I am going through treatments that I don't like, that make me feel sick, that make my hair fall out, that make me so tired, that affect my short-term memory in ways that frustrate me to no end, that make me feel stupid because I have a hard time remembering words or staying on any one train of thought.

What I am doing is not strength or bravery. What I'm doing is what I have to do to survive, which means that I'm exposing myself to literal and metaphorical annihilation.

The interesting thing is that I am getting closer to finding that nugget that is indestructible. Self-examination of the mind, body, and soul is daunting, but it has also forced me to be honest with myself in ways that I never expected. I am finally getting to know my Third Face, and I am finally learning that I don't have to run away from pain, and I don't have to be afraid to be vulnerable.

"[T]he truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy" (Chodron 9).

Ultimately, it doesn't matter if I run from the pain. It will be there if it needs to be there. This emotional roller coaster from hell has taught me that we are all vulnerable. We are all afraid. We all feel pain. What if we worked on exposing our vulnerability so that we can find the essence of strength deep inside of us?

Books: When Things Fall Apart by Pema Chodron (part 1)

I was talking to a friend several days ago, and the topic of Hard Times came up in conversation. Hard Times include my cancer, but it also includes the other difficult things that life throws at us.

In American society, there is so much of this idea that if we work hard and have a good attitude, then everything will work out the way it's supposed to. As a result, when people are going through a particularly difficult time, whether it's chronic or terminal illness, whether it's death or divorce, whether it's mental illness or heartbreak, we feel compelled to grin and bear it. Be strong. Don't air your dirty laundry. Think about that stigma around mental illness, for example. We don't tend to talk about depression or anxiety disorders, as if they were shameful, yet we are not ashamed to admit that we caught a cold or flu. This idea that a positive attitude and a go-get-'em spirit will prevail can be so problematic, especially when considering what that means if you don't have a positive attitude. Does that mean that we deserve whatever life throws at us if we aren't positive enough?

This book is by an American Buddhist nun, which immediately piqued my interest because I can remember reading the Dalai Lama's The Art of Happiness about fifteen or twenty years ago. It fundamentally changed how I view and interact with people, and so far, I am finding When Things Fall Apart changing how I view myself.

Amazon has this to say:

How can we live our lives when everything seems to fall apart—when we are continually overcome by fear, anxiety, and pain? The answer, Pema Chödrön suggests, might be just the opposite of what you expect. Here, in her most beloved and acclaimed work, Pema shows that moving toward painful situations and becoming intimate with them can open up our hearts in ways we never before imagined. Drawing from traditional Buddhist wisdom, she offers life-changing tools for transforming suffering and negative patterns into habitual ease and boundless joy.

I haven't finished this book yet, but I have so many thoughts and feelings that I decided to just jump right in and start doing my thing. You may have followed along while I was responding to and discussing Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler. I plan to follow a similar format where I talk about this book for multiple posts.

This is only the introductory post for this book, if any of you would like to get your hands on it to read with me.

The Venerable Pema Chodron  says this in the first chapter:

"It's not a terrible thing that we feel fear when faced with the unknown. It is part of being alive, something we all share. We react against the possibility of loneliness, of death, of not having anything to hold on to. Fear is a natural reaction to moving closer to the truth. If we commit ourselves to staying right where we are, then our experience becomes very vivid. Things become clear when there is nowhere to escape" (Chodron 2).

Another dear friend of mine once told me that sometimes you have to "embrace the suck." In fairness, this was my Badass Marine friend, so his version is a little less poetic, but the sentiment remains the same.

I will be the first to admit that I am afraid of a lot of things, including but not limited to my cancer, heights, snakes, catching the flu, and the dark.

The truth is that somehow, at some point, I became the kind of person who enjoys doing frightening things. Skydiving. Ziplining. Swimming with manatees*.

When I went skydiving, and I jumped was pushed out of that plane, even though I am afraid of falling, afraid of flying, and afraid of heights, I suddenly realized one key fundamental point: No matter how scared I was, no matter how hard I screamed, the outcome was inevitable: I would hit the ground.

Of course, it was important to trust that the parachute would work, and we would have a nice soft landing, but even if it didn't, fear is not stronger than gravity, and no matter how frightened I was, fear would not allow me to spontaneously grow wings. I had to accept that mind-numbing terror and sit with it. That gave me the opportunity to just be in the moment, where I was, 13,500 feet in the air.

Being unable to escape the pull of gravity, I realized how big the world is, and how tiny I am. This was unexpectedly comforting for me, because it made me realize that I was just a tiny little scared blip. In reality, we are all tiny little scared blips. Some hide it with arrogance, some with vanity, some with emotional walls built to keep people away.

What happens when we embrace that fear? What happens when we stop trying to run from that fear?




*I know that manatees won't hurt anyone, and they are super cute, but I am still afraid they might be secret carnivores. Don't judge me.

Cancer update: Things that have been happening.

I've spent so much time thinking about other things that I realized that I haven't really had any cancer updates lately. So here it goes.

I am at the boring stage of cancer. Of course, there's the vomiting, the dehydration, the fatigue. There's the feeling like I have ADHD because my attention span has significantly decreased. There's the multiple naps I take every day because the body is working hard to repair all I've been through. There's the change in medications and the change in appetite.

None of this particularly interesting to me. I'm sure there are some who might worry that I am wasting away on my deathbed, but the majority of the time, I am just napping on the couch.

I'm still not driving because my eyesight still hasn't returned to normal (which Rockstar Neurosurgeon said could take several months). I'm in my house almost all day unless someone wants to come pick me up to go somewhere while The Husband is at work. Honestly, though, since it is finally starting to get chilly, I am perfectly content cocooning up in a blanket in my house.

So, during the day, I write, or nap. Play with the dog. Read from my book. The Husband comes home from work and we figure out the dinner situation. We empty the trash and wash the dishes.

Remember back when I said that cancer was boring?

It still is.

Don't Read with Me: The Rule of One by Ashley Saunders and Leslie Saunders

So I tried to read this book:

I thought the premise sounded really interesting, so I've had it on my wishlist for a while and a dear friend bought it for me.

Amazon has this to say about it:

In their world, telling the truth has become the most dangerous crime of all.
In the near-future United States, a one-child policy is ruthlessly enforced. Everyone follows the Rule of One. But Ava Goodwin, daughter of the head of the Texas Family Planning Division, has a secret—one her mother died to keep and her father has helped to hide for her entire life.
She has an identical twin sister, Mira.
For eighteen years Ava and Mira have lived as one, trading places day after day, maintaining an interchangeable existence down to the most telling detail. But when their charade is exposed, their worst nightmare begins. Now they must leave behind the father they love and fight for their lives.
Branded as traitors, hunted as fugitives, and pushed to discover just how far they’ll go in order to stay alive, Ava and Mira rush headlong into a terrifying unknown.

This book isn't bad, necessarily.  The reason I couldn't get more than a few pages into it was because it was too similar to a Netflix Original Movie What Happened to Monday

IMDB has this to say:

In a world where families are limited to one child due to overpopulation, a set of identical septuplets must avoid being put to a long sleep by the government and dangerous infighting while investigating the disappearance of one of their own. 

I watched this movie when it first came out, and easily dozens of times since then. I love this movie. I did not expect The Rule of One to remind me so much of What Happened to Monday, and so, I had to stop reading it and switch to something else. That's not to say that I won't read this book someday later, but for now, I'd rather re-watch this movie!

Hair Today, Gone Tomorrow!

Guess what time it is...

That's right, it's time for another hair post!

So, my hair has been... interesting.

Most people think that the hair falls out because of the chemo. What they might not understand is that in my case, the hair loss is from radiation, not chemo. The radiation beamed its science into my brain, but it also burned me pretty badly. It led to a 'do that was less than ideal, and although I don't consider myself particularly vain, I also don't prefer being stared at.

See, at the final stage of radiation, they do what is called a "power up, cone down" for treatment. What that means is that while, for the first five weeks they beamed radiation over a larger area of my brain, but at a lower dose. During "power up, cone down" treatment, they tighten that beam so it is hitting a much smaller area of my brain, but with a higher dose.

I tell you all of this so I can show you this:

Essentially, I got the equivalent of a severe sunburn to my head. Now, as someone who has only ever had one sunburn ever, I had no idea how painful and irritating this would be. If you look at that area right by my ear, you can even see blisters.

No fun, right?

And then it started peeling.

So, when the peeling was finally over, I was left with an almost perfectly smooth side of my head. It looked not terrible from this angle, but it was an unholy mess of unevenness from every other angle. Also, because the peeling skin also took out hair follicles, I am going to bet that I might be half-bald for quite a while, or maybe forever; who knows?!

I found myself feeling self-conscious because my hair kept reminding me that I'm cancer lady. I don't like being cancer lady. As a shy introvert, I tend to make decisions based on what will bring the lowest amount of attention, so I went back to this 'do:

You've seen this haircut before, and for the time being, it will probably stay like this. Unfortunately, it's the wrong time of year to be rocking a haircut like this, but it's a good thing I like hats!

More of the Ugly side of this Diagnosis

Through this entire ordeal, I have tried to look on the bright side of things.

Yesterday, the only bright side was at the bottom of the toilet bowl.

I started the six months of chemo, and suddenly, I was barfing over and over and over and over again. I hurled nine times within three hours. The same medication that I have been taking suddenly made me a puke machine.

I talked to my doctor (Reminder: Don't be Dr. Google!).

Evidently, this is not unusual when moving to this round of treatment, but they did want me to go to the cancer center for infusions. They pumped me full of fluids and anti-nausea medicine and sent me on my way. Nobody was worried, which was a good thing, because that helped me relax just a little in a very stressful situation.

This means, though, that I need to adjust how/when I take my meds, when/what I eat, and when I sleep so that I can figure out what my new normal will be.

My therapist once told me that she hates the term "the new normal." I have to say that I agree with her. Things are constantly in flux, swirling in the chaos that is life. We may become accustomed to one form of this chaos, but one thing is always for certain (especially with this diagnosis): Don't get too accustomed, because things are always just on the brink of change. We all have to be prepared for that, because the change may be positive, like a cool new haircut or it may be negative, like hurling for three hours in the middle of the night.

Historically, I've tried to be brutally open about my journey with glioblastoma. I have tried so hard to be more than just my diagnosis, but simultaneously, I have tried to explore and explain my journey, in the hopes that perhaps this voyage can be just a little less difficult or frightening for anyone who might be sailing through these stormy seas.

Full disclosure, though: I have NOT been 100% open about my journey.

You have seen my First Face. That's the easy one.

I have worked really hard to show you as much as possible of my Second Face. This is really challenging, because I am not accustomed to opening myself up to the vulnerability involved in being so exposed, especially when things get ugly.

The reason I have not been 100% open about my journey is because my Third Face needs the time to process information, to make decisions, to determine what kind of access my Second and First Face have to my innermost feelings that make me who I am. My Third Face is mine. This means that although I have been chronicling this journey, this does not mean that any individual person has a right to see my Third Face (or even my Second).

This journey is incredibly difficult, moreso than I let on much of the time. I try so hard to inject my own inappropriate and morbid sense of humor to this little piece of hell, because if I can't laugh at or mock my cancer, what can I do? But please remember, my Third Face is mine.

So there you have it. Opening up my Second Face is very difficult. But I think that it is important that people who see my First Face understand that, although I might make light of the situation, my Second Face is showing you that this is hard. Harder than you know.

How can you help?