What I Learned By Hunting Virtual Ghosts

The drive to conquer my fears is why I insist on playing Phasmaphobia even when I dread the thought of it.

Phasmaphobia is marketed as a “horror” video game, the kind that I actively avoid. The concept is simple: you and up-to-three other networked players enter a haunted building, set up equipment and collect evidence of a ghostly presence. There are different tasks to complete but the ultimate goal is to gather enough data to be able to determine what type of ghost is haunting the premises.

Oh, yeah. And also to get out alive.

Because depending on how long everything takes you to do, sooner or later, the ghost is going to hunt you.

Sure, I’m fine as long as I’m sitting in the ghost-hunting van.

Now, there’s a lot more that I could say about this game, specifically about how it’s set up quite intelligently to be unnervingly terrifying. And there’s Articifial Intelligence involved, which means that the ghost can recognize some of the words that you say (hint: don’t cuss!) that will get it angry and on the hunt faster.

But this post is not a review of the game.

This is an observation that this silly game picked me up and threw me to the ground. It was a reflection of real life, because it perfectly reproduced ME, under acute stress.

By that I mean, tight chest, rapid breathing, elevated heartrate, shaking hands, the whole shebang. I get that gamers go through that, but for me, this meant more. These reactions were exactly the kinds of physiological responses to anxiety that have increasingly plagued me through the years.

People who can handle high levels of stress with cool distance have always impressed me. In fact, I’ve come to see that as a superpower. Being able to maintain mental space around you so that the walls don’t come closing in, squeezing breath out of your chest. That ability to think clearly when things are falling apart around you.

I have often thought, what would my experience be like if I could just dampen that physiological response. Well, Phasmaphobia has given me a chance to practice that.

I don’t do so well when I’m in a dark haunted house, getting threatening messages from the resident ghost.

I imagine myself going into that onscreen home, doing what I need to do, seeing the signal that the ghost is on the hunt (flashlight starts flashing and the front door closes and locks), and very calmly moving to a hiding place and waiting out the event. Declaring to the ghost, “You don’t scare me! I had cancer!” This is, after all, just a game. I’ve been through far worse things in my life.

But, no. Really, I’m kind of a mess. I can’t breathe, I can’t maneuver through a doorway, I drop things and do stupid stuff.

But I’m also stubborn. And playing this game with others like my husband who is unimpressed by the potential terror and shrugs off my disbelief that he’s not unnerved at all (note: he’s also played way more video games) makes me all the more determined to use Phasmaphobia as a “safe space” to practice my calming skills. I can remind myself that the fear is not real, that I’m only looking at a screen and that I walk away from the computer at any time. I don’t have to feel this way.

I am currently a work in progress. But I’ll get there. And once I do, my self-confidence will open the way to conquer other terrifying situations.

Once I stop being scared sh*tless.

I Am An Imperfect Meditator

I meditate. It is a daily habit that I engage in with the best intentions, but I am a victim of my wandering mind. Some days are better than others, most days I struggle with distractions.

Often, I can be halfway through a sit before I realize that I’ve been clenching my jaw or tensing my brow or gripping some other part of my body, thinking I’ve been relaxed but I’ve been kidding myself.

There are times that I’ve managed to stay with my breath, and then start getting excited that I’ve stayed with it that long, and then start imagining how I might look, staying with my breath…and of course, then I’m no longer meditating.

Yep. Welcome to the noise in my noggin’.

So it goes, day in, day out. Everyday, once or twice a day, or maybe even more. Some days feel like a complete waste, like I’ve got a freeway running through my head and have no idea what I’m doing.

But once in a while, I get a few moments of golden light. They may just flicker in and out, but when I look back at those moments I know everything flowed.

And those mindful sessions make all the other ones worth the effort. Every time I pause before reacting. Each time I recognize my body’s physiological response to a stressor. When I remember that I don’t have to respond with anxious energy. That I get to chose what happens inside my head. That I can just say, “Sh-h-h-h.”

That I can stand back and observe the storm without getting sucked into the whirlwind.

I meditate and often don’t do it well. But I still meditate. As of this posting, 1,380 days in a row, originating with the most frantic breaths shortly after my cancer diagnosis. Even through chemo, when I thought I wouldn’t make it through the night. Sloppy meditation sessions that seemed to be going nowhere.

Change doesn’t require force, it requires consistency.

Those imperfect meditation sessions have changed over time, imperceptable on a daily basis. Perhaps they have worn away a few rough edges the way constant drops of water oh-so-gradually wear away a stone. And just as an indentation forms where the drops hit, so meditation has molded a little basin for me, a bit of extra space in my mind that provides just that much more breathing room.

I am still at the very start of my mindfulness journey, so imperfect and stumbling. But even with the little that I have achieved, I am light-years ahead of who I was before I started, wide-eyed with fear and not knowing how to stop the rush of emotions.

It was terrifying then because I didn’t realize what was happening. Now I know, and that makes all the difference.

Inviting Gratitude, Gently

Since this week is the Thanksgiving holiday in the US, it’s a good time to revisit the practice of gratitude. I wrote some time back about my nightly practice of writing down three things for which I was grateful. It was a lovely way to close the day on a positive note, as I would always be able to jot something down, even if my day was difficult.

Nightly gratitude journaling started feeling forced, certainly not the point of the practice.

However, after a number of weeks of this, I found it harder to be consistent. I would skip days, and often on the days that I could find something to write in my journal, the process would feel forced. The more I had to work to pull out little things to be grateful for, the less meaningful they became. Eventually, and regrettably, I stopped the nightly practice altogether.

Apparently, this is to be expected. Psychologist Sonja Lyubomirsky and colleagues from UC Riverside found that journaling once a week was more effective for boosting happiness than doing so more frequently. I can see why this would be. Everyone has stressful days that can wring any semblance of happiness out of us. Yes, while I found something to be grateful for any given day, if the overwhelming feeling was that of negativity then I was simply going through the motions of trying to find something–ANYthing–to write down. For me, this waters down the effectiveness of the exercise.

But writing on a weekly (or less) basis allows me to focus on the most powerful feelings of gratitude, and those have a stronger uplifting effect on me. They last longer and evoke a joy that daily journaling couldn’t.

In my life, there have been times that have felt very dark and heavy. In the moment, I have not always been able to find anything positive in them. Take, for example, cancer. Those weeks around my diagnosis were literally the most terrifying of my life, because I felt that this situation could actually cost me my life.

Quite frankly, if someone had told me then that I should stop and think of all the things I was grateful for, I might have told them to go to hell. The intensity of what was taking place right then–the shock and disbelief, the despair, the sheer fear–was too great to let in any light. For someone to have suggested that I should essentially “look on the bright side” would have felt like they were dismissing the reality of what is cancer.

For me, the process of letting gratitude come to me was far more effective than trying to snatch it out of darkness.

But as I passed through those worst weeks, I noticed things that bobbed up to the surface that I could be grateful for, so much so that at times I was overwhelmed with gratitude for how events had unfolded compared to how things could have been. I still had cancer and my life was still upended, but I felt a sense of grace about it all.

So if were to give one piece of humble advice to someone going through desperate times, it would be to remain open to the possibility that no matter how dark things may seem right now, when you finally have a chance to take a breath, you may see that glimmers of hopeful light have been shining through all along.

Hey Doctors! Before You Give a Cancer Diagnosis…

From time to time, I think back on my cancer experience (who am I kidding, I think about it every single day!) and wonder how things might have gone differently. Generally, I write for the cancer patient, but this post is directed at the doctor who delivers the diagnosis.

So…dear doctors:

Think very carefully about what else you want to tell a new cancer patient right after you tell them that they have cancer. It better not be important, because they’re not going to hear it. Once you deliver the diagnosis, a cancer patient’s executive level cognitive processes freeze, making comprehension difficult. Any further speech sounds like the “wah-wah-wah” talk of the adults in Charlie Brown cartoons.

For example, I was told two things by my radiologist, when he came into the room after he looked at my diagnostic ultrasound: (1) you have cancer, and (2) you’re going to be alright. Guess which one of those points I didn’t remember. I’m sure my doctor was trying to be cheery and supportive, but I can guarantee you it didn’t work.

Let’s face it, no matter how gently a doctor tries to break it to you, being told that you have cancer is devastating. It’s perfectly normal to be blown back by the news because your life is going to change drastically for at least a while, and maybe permanently. But, geez, doc, you should be prepared to repeat the same info at least several times and cut out the unnecessary bits. Your newly-designated cancer patient is going to have to need time to process the news!

Tip to the patient: bring someone with you to your subsequent visits who’s good at taking notes and is on an even keel. I brought my husband but he barely wrote anything down. Turns out, he was just as shocked as I was and wasn’t taking the news any better.

Hey, doc, I get that this is hard on you too. So please don’t think I don’t appreciate what you do (especially these days!). But please consider some of these things before you deliver your next cancer diagnosis. Thanks. 🙂

Following up on that, doc, the next thing that I would suggest is that you not give overly specific responses to questions based on assumptions you’re making. I asked about the recovery time from surgery, since I was terrified by the thought of going under the knife. Mine was early stage breast cancer, and ultimately I had a lumpectomy, but that same radiologist had warned me that recovery would take 4-6 weeks. Up to a month and a half?!? I whimpered something along the lines of, “But I have to work,” at which point he reminded me that my health was more important than my job.

I don’t know where he pulled out such a long recovery time, but being given that sort of time frame compounded my anxiety. Maybe he also said that some people have a shorter recovery time, but of course, I wasn’t processing info well and all I could remember was “4-6 weeks”.

So I would recommend to doctors, (1) if you really don’t know specifics, don’t offer estimates–I was back to work the week after my surgery, btw–and (2) please don’t blow off a patient’s concern about the importance of other aspects of their lives, like going to work. Yes, ultimately, as the saying goes, “if you don’t have your health, you don’t have anything.” But for many of us, if you don’t have a job, you don’t have health insurance! Everything in our lives is interconnected. It’s all important. Please keep that in mind.

Hey, nobody likes to deliver bad news and I know you’re trying your best. But the only thing worse than telling someone they have cancer is being the one it’s being told to. So please, be gentle. You will go home that evening possibly bummed that another one of your patients has cancer.

The patient is going home that evening embarking on one of the most frightening journeys of their life.

After All Those Bad Things I Said About Letrozole…

I feel that I need to revisit the whole letrozole thingie, just to be fair.

In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.

Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.

So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.

Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.

There are some bright spots in this.

But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.

My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!

But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.

I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?

Yes, I can.

Can’t Let Go? Try Setting It Aside

With everything that’s going on right now, it would not be surprising if you were having trouble sleeping.

I myself have an internal alarm that wakes me up around 3am, giving frightening thoughts a chance to land hard punches. It’s far easier to keep negative emotions at bay during the daylight hours, but our defenses are down when we’re groggy. Before I know it, I’m already on that hamster wheel, getting nowhere and working up an anxious sweat in the process.

Ok, nighttime. Wanna go?

There’s a lot to worry about in the time of COVID-19. Take your pick of stressors: finances, physical health, relationships, emotions. At night, our brain wants to fix everything that we’re hit with during the day, but obviously, that’s not the time for it. Few things are as critical for dealing with stress as a good night’s sleep, which you won’t get if you’re trying to calculate how many months’-worth of rent you have left.

The mistake we make is trying to let go of things completely. When “danger is imminent”, as in, the worst-case scenario is a distinct possibility, it’s unrealistic to pretend it’s not. I promise you, as a former cancer patient, I had terrors breathing down my neck. I could not simply “let go” of them. They were life-changing and oh-so real. But with a little effort I could loosen their grip on me.

Your concerns need some respect. So instead of trying to avoid them, try gently putting them aside. You know they’re still there, they know they’re still there, but you’re not butting heads. This may take some mental calisthenics.

Even the tiger needs some shut-eye.

Ask yourself, “Can I do anything productive right now?” If the answer is no (hint: unless the house is on fire or there’s a tiger loose in your bedroom, the answer is no), then create a mental shelf for your anxious thoughts. You can build one for yourself, right there lying in bed, no hammering required.

Find yourself a jar with a secure lid. I know you have one somewhere in your mind. Scoop your thoughts in there, screw the lid on tightly and place the imaginary jar on that imaginary shelf. This may take several tries — unpleasant thoughts are slippery — but that’s okay. Make sure the shelf is across the room from you. The jar will still be there in the morning when you wake, thoughts swirling inside. But in the darkness, you’ll have some space between them and yourself.

As you lie in your bed, take a deep breath, feel the weight of your body on your mattress, feel the softness of your sheets on your skin. Look at the shelf, way over there. Way, way over there, and you safe in your bed. Allow yourself to relax.

That’s what you need most in the wee hours of the morning. So rest easy now. Tackle the problems tomorrow.

A Funny Thing Happened on the Way to My Mammogram

Of course, maybe not funny at the time. File this under, even the best laid plans can be undone.

I had been preparing mentally for my mammogram over the past weeks, and everything was going smoothly. I had a nice mammographer, not overly chatty, very matter of fact. There were video screens on the walls of the mammography room projecting peaceful nature scenes for me to watch as I got squooshed, as if ocean waves would make me forget that my breasts were being clamped in a mechanical vice.

Then, finally, I was done and back in the intimate waiting room. There were only two of us women there (along with my husband, who, since my breast cancer diagnosis, no longer lets me get scans alone). The other woman’s mammographer came out and told her that everything looked good and she was free to go; they’d see her in a year. She happily left.

Several minutes later, my mammographer came out and said something along the lines of, “The doctor is looking at your scans. I’ll bring you to the consultation room so that we don’t have to talk out here.”

Had I not just heard the exchange between the other woman and her technician, I would have been fine. But since I’d heard it, my heart started to pound. My husband and I were led to a cozy little room…with an array of informational pamphlets about biopsies and breast surgeries on a side table, and you can imagine where my mind went.

Forget mindfulness, forget non-attachment, forget letting go of expectations. Forget three years of daily meditation. I was terrified. I tried slowing down my breathing, but it only made me feel like I was being starved of oxygen.

I unloaded all my fears on my husband, who up to that time, was not experiencing the same level of concern.

“I don’t feel good about this. Why did they bring us into this room?”

“They always bring us into a separate room.” He was right, we always went to a consultation room for the results. But the other woman hadn’t.

“Why are all those pamphlets there?” I motioned to the biopsy pamphlets on the table.

“They’re always there.”

“Why did they tell the other woman out in the hall?”

“Maybe because you’re having a 3-D mammogram so there’s more to look at, or maybe because you’re a cancer survivor, and they probably bring all the former cancer patients in…”

Yup, I was having flashbacks.

Yes, he was giving me solid, rational explanations, but I would have none of it. I was in the middle of a “fight or flight” moment and struggling to regain composure, but it was too much.

I simply could not let go of intense feelings. They were too much like what I’d experienced three years earlier, at a time when I so desperately feared bad news. And then got it. It’s difficult to articulate what that feels like to someone who hasn’t experienced it, but if you’ve been there, you know exactly what I mean.

Throughout all of this, however, there was a small, reasonable piece of my brain that was collecting data. I had noted the time when the other woman had received her news (1:20pm), so I would have a better idea of how long this was taking. I sensed the tightening in my muscles and attempted, with difficulty, to release them. I’d been frozen into a block of ice and was trying to chip my way out with a butter knife.

Then at 1:27pm, the radiologist knocked and came in.

In that first fraction of a second that I saw her face, my brain ran a scan of it, and it told me…nothing. I’m betting that doctors are honing their “stone-face” look, so as not to give a clue one way or the other. My radiologist said hi and stretched out her hand, I shook it, and she told me everything looked good.

Just like that.

The rational part of my brain exhaled, but it took hours for my body to shake off the hype. By the evening, I felt like I’d gotten a year’s-long extension on a tenuous lease. So, I thought, I have another twelve months do something useful with my life. Go!

A week later, when I told my oncologist about this mammogram episode, he explained that as a cancer survivor, I get diagnostic mammograms from now on, and those always involve a consultation with the radiologist afterwards.

Oh. I’ll try to remember that for next time.

A Month of Fear-Driven Memories

Here we go again…

Around this time of the year, I get uneasy. It’s February, which means it’s time for my mammogram and the determination of whether I’m still in remission from breast cancer. It’s also the month when, in 2017, my life was slammed in a different direction and the best I could do was try to hang on.

February 8, 2017: Doctor’s appointment. After feeling a lump in my breast for six months (SIX MONTHS!!!), I finally met with my general practitioner to have her tell me it was nothing. Except that’s not what she said. Instead, she gave me a referral for a diagnostic mammogram and warned me not to put it off.

My own mammogram is on February 27, 2020. I don’t think I’m going to get bad news, but I just want it over.

February 23, 2017: My mammogram and diagnostic ultrasound. I had not expected that waiting two weeks for a screening would be so horrible, but my anxiety worsened with every day. I also had not expected the radiologist to come in and tell me that I had cancer. Technically, he wasn’t supposed to do that without biopsy results, but he knew what he was looking at. One in eight women is diagnosed with breast cancer at some point in her life, so he’d seen his share. Things spiraled downhill after that.

February 28, 2017: Biopsy. This procedure was anticlimactic in the sense that I knew I had cancer (see above). What I didn’t yet know was how aggressive it was. The procedure itself wasn’t bad but the mammography technicians were unable to get a clear picture of the titanium markers that the radiologist who biopsied me had inserted as surgical guides, so they took over eleven mammogram images on that left breast. The physical squeezing was miserable, but I was being squeezed mentally too. I think they eventually got the image they wanted…or maybe they didn’t. It was all a blur. I didn’t want to remember.

But now it’s three years later and I remember everything too clearly. Every February, I lose my footing on the Earth and hover for a few weeks in limbo, starting from when I make my mammogram appointment.

I’ll have an uneasy feeling until I get the “all clear” from the radiologist, or “I’m so sorry, but…”. On one end of the continuum, there’s glorious relief, on the other, mind-numbing anxiety, and I’m standing here in the middle. Most of my life now is lived in this middle ground and it’s a struggle to release expectations and attachments to how I want things to be. I’m not great at it, but I have the rest of my life to learn to deal. I hope that’s enough time.

Cartwheeling Down the Hall

Although I don’t do so often, I can still knock out a proper cartwheel.

Since it’s a “wheel”, you only need a lot of space moving forward, not width-wise, so presumably, it should be possible to cartwheel down a hallway. After all, gymnasts manage this on a balance bean only a few inches wide.

But that’s not what happens to me. Even when there’s physically an ample amount of space for gymnastic endeavors, psychologically there is a perceived narrowness.

That lack of space exists only inside my head, but it’s powerful enough to hinder even an attempt at a cartwheel in our apartment.

I imagine limbs thwacking against walls coupled with lots of pain and regret.

This post, of course, is not about cartwheels. It’s that I often approach life events in a similar way. There is a narrowness of view and fear of pain, and these limitations take up real estate inside my head. While in reality, there’s enough space for emotions to express themselves and enough time to work out any arisen problems, those imagined walls confine my actions.

Yeah, there are moves that I will *not* be able to manage no matter what.

Were I to close my eyes and trust my abilities, cartwheeling through the little hallway from my galley kitchen to our dining area would be no big deal.

But faith in myself has been eroded away and my sight is influenced by not only things that came before but also the discomfort of what may come in the future.

Breaking through these barriers takes work, and while I’m up for it, it is a process. The trick, of course, is to generate enough confidence to cartwheel down that hallway while I still remember how.

Cancer’s No Big Deal…Except That It Is

You’d think that by now, over a year since finishing most of my breast cancer treatment, I would drop the subject and get on with things. But, no, cancer isn’t like that — and apparently, neither am I. Just when I think I’ve moved on, something else comes up. So here goes:

Breast cancer has had me see-sawing between two states of mind.

On the one hand, when I was going through treatment, I didn’t want people to feel uneasy talking to me (because they do!). I downplayed the cancer diagnosis and tried to be as matter-of-fact as possible, all with a pleasant smile and carefree shrug. Yeah, surgery-chemo-radiation, no biggie. My focus was on mitigating their uncomfortable reactions — in my mind, they were the ones needing the comforting and support.

That’s because telling someone I had cancer often made them squirm. They didn’t know the “right” thing to say, afraid of hurting or upsetting me, even though the reality was that what was inside my head was far worse than anything they could have said. So I always tried to crack a joke about my bald scalp or discolored nails as if to tell them I’m cool with it.

This extended into post-treatment life. Since I feel a little distance between the disease and me, I don’t always remember that I can catch people off guard when I talk about cancer. People still blush and stumble on words, looking like they want to change the subject. I always try to make it no big deal.

But on the other hand, the reality is that cancer is serious. Treatment can be all sorts of horrible and there are no guarantees about anything. Everyone who’s had breast cancer has to live with the uncertainty of its return. And with the large number of women who have experienced or are still wading through different stages of treatment, there’s a lot of suffering going on.

I know, I know, I know. Things will be fine.

Except when they’re not.

And so, I struggle with people telling me not to focus on the past. Obviously, that would be helpful. But it’s not easy, because even when treatment is over, the fear remains. Cancer strode in like an arrogant rake, dragged me around the block a few times and left an indelible mark on my psyche. My health is back and I’ve regained a lot of physical strength, but there’s that niggling fear that cancer will return and take it all again, and the emotional pain associated with that potentiality stifles any celebration. It was easier to focus on getting through chemo and radiation than to wander into the Wild West of the future.

So I fight with myself. Sometimes I need to talk about how miserable it was and how angry it made me (one side of the seesaw), all the while not wanting to make people uncomfortable about it (the other side). That, of course, is not a successful combination. Ultimately, I put on a brave face, take a deep breath and quietly hurt inside.

But don’t worry, after I write about it, I can shake off these feelings and I’m okay.

Except when I’m not.