Patience – Frantic Shanti

Cancer, “Why Me?” and Mustard Seeds: The Path to Acceptance

At some point in a cancer patient’s life, there are certain questions that tend to come up. The most likely one of these is why we were singled out to have such a serious calamity befall us.

I went through a long period of this. I mean, loooong. The early posts of this blog are filled with agonized questions about why cancer hit me even when, by all accounts, it shouldn’t have. I posted about not having risk factors and blah blah blah. I kept going around and around and around on this, stuck on a hamster wheel that wouldn’t stop.

I clung to the same ride, unhappy but not wanting to get off.

Allow me to stress: cancer is a serious illness. That is not to be taken lightly. Most of us, regardless of lifestyle, experience profound shock with our cancer diagnosis. It may seem that life is cruel and unfair (well, it is) and that we didn’t deserve to get cancer (well, we didn’t).

I struggled with anger and frustration for years. It’s both embarrassing and freeing to admit that.

Acceptance is a process. I thought I’d accepted my situation a couple of years ago, but in retrospect, I hadn’t. Some days I felt holy and zen-like, floating on my own little cloud, but it was a sham. I’d have glimpses of acceptance and then a wave of anger and resentment would wash over me and I’d be pissed off for another week.

I thought God hated me. A purportedly loving and merciful being allowed this to happen. It was hard to not think of cancer as a blow against my value as a person because of how I interpreted my situation.

It wasn’t until I stepped outside the confines of that type of thinking that I gained a different perspective. I posted about re-writing my life (basically, viewing the same experiences through a different, more positive lens) which provided a glimpse of another way to assess what had happened. And when I heard the retelling of an ancient Buddhist tale I finally understood what it meant.

Never seen mustard seeds? Here they are. Kisa, however, came up empty-handed.

What was that tale? It was “Kisa Gotami and the Mustard Seed”. In brief, Kisa Gotami’s young son dies and she is so distraught–not understanding why she would deserve such a painful experience–that she goes to the Buddha in hopes that he can bring the son back from the dead.

The Buddha agrees to revive her son if she can bring him mustard seeds from households where no one has died. Of course, she cannot because death touches all living creatures. She is comforted by the realization that her sorrow is shared and understood by everyone in the community and she finds acceptance of her loss .

Another way of looking at this is that we all suffer. For me, it’s a reminder that while a cancer diagnosis is life-threatening, there are few (if any) humans on this Earth who have not experienced some form of loss or grief at some point in their lives. Yes, some of us bear a far greater burden than others–grave inequities exist. But they also bring profound opportunities for growth.

And while I (and I expect most cancer patients/survivors) would have preferred to experience this personal growth through means other than cancer, being able to be here in this moment, having turned the corner, is one of the most beautiful gifts I could ever receive.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Two points need to be made here:

Point #1: Burdens are distributed unequally. Socioeconomic, racial and other disparities further tip the scales, making outcomes from a disease like cancer even worse. As a society, we haven’t come close to rebalancing this. Acceptance is easier for some than for others; no one has a right to preach to anyone else.

Point #2: It’s been over five years since my initial cancer diagnosis, and even longer that I’ve been worrying about it. As I mentioned above, it took a LONG time to get to this point of acceptance. Knowing this, I would never rush a new cancer patient to get here. Acceptance must come organically, and yes, sometimes never does. Cancer breaks hearts and no one experiences it in the same way. Be patient.

Mindful Games I Love: Meditating with “Playne”

I didn’t think I needed a video game to help me mediate.

In the description for “Playne” (on the Steam platform), the developer states that the game is designed to help you establish a meditation habit. While, I thought it would be uninteresting for someone who already had a solid habit, the reviews of the game were very positive and the concept seemed inviting, so I decided to give it a try.

*After a week of meditation, saplings have emerged.*

I had no idea that it would have such an impact on the quality of my meditation. While I often listen to ambiances (such as through the “MyNoise” app and website) and use guided meditations (“Calm”, “Insight Timer”) or similar auditory cues (“Unwind”), what I didn’t have was a visual representation of my meditation practice as it progresses over time. “Playne” supplies that.

“Playne” has three modes: Story, Sandbox and Evolve. This post is about the Story mode, as that’s the one most people start out with and the one I’m currently working on. Sandbox allows to you build your own meditation spaces and Evolve can only be unlocked after 100 days of meditation (I’m still in the 50s).

*You have a small selection of meditations to choose from with the emphasis being on learning to sit with yourself.*

The game starts out on a semi-barren island with only a tiny flame in a campfire, a stone lantern, several rocks and Sensei Fox to keep you company. There are both guided and unguided meditations to choose from and as you meditate everyday, the fire grows taller and seedlings sprout and grow. With consistency, you unlock different story chapters, which wise Fox relates, gain the ability to change the weather, and most importantly, grow the island into a beautiful meditation retreat. All it takes is patience.

*There is a breath bubble to guide your breathing if you wish, and also a ring that serves as a countdown timer. Both can be turned off if they are distracting or unnecessary.*

You are given the ability to chose the length and type of your meditation. In addition, you can regulate inhales and exhales (the length of which you can designate) with a breath bubble, keep track of your meditation time with a minute-ring, enable a journaling option (known as “thought pages”, which you can either keep or burn in the fire if preferred), and mark each instance that you become aware that your mind has wandered (as I enthusiastically wrote about here). There are different places on the island to meditate, and as you accumulate more days, you not only get more weather options to chose from, but also access to elements such as birds, fireflies, Aurora Borealis and butterflies. These are quite lovely and make your “Playne” even more inviting.

Be forewarned that there is the temptation to mark your progress and count achievements. I understand why, from the viewpoint of a game, this is necessary but it does go against the concept of mindfulness. On the other hand, I’m really looking forward to flowers and butterflies!

Now for the potential downside: As much as I enjoy all the offerings, there are a few parts of the game that seem antithetical to mindfulness meditation. The game keeps track of “effort”, you gain “achievements” and note your “progress”. As do other meditation apps/games, “Playne” maintains a record of your streak, and depending on your settings, if you don’t log in to meditate with “Playne” on a given day, you run the risk of having the flame in the campfire go out. While I know that this is done to encourage daily meditation, it is also somewhat problematic, as the whole idea of mindfulness is non-striving. I feel that too much emphasis on achievement in the context of a meditation practice goes against being mindful of the present.

*Over 50 days into this, my Playne has grown significantly.*

Being of a naturally competitive nature, I was reluctant to turn my practice into one where I would be clinging to achievements. Nonetheless, there are enough positives to this game, and it has benefited my practice so much, that I have been learning to let go. That in itself is a significant improvement!

*Yes, it’s unlikely that I will risk breaking my streak, but that’s pressure I can live with.*

Reservations aside, I am really impressed with the game. I will write about the Sandbox and Evolve modes when I get to them, and post more images as my “Playne” grows. Additionally, there is a virtual reality (VR) option that I am looking forward to playing with. For anyone starting out with meditation, “Playne” offers a solid platform from which to develop and maintain a consistent meditation habit.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In addition to “Playne”, I am also using other mindfulness media on a regular basis (my favorite ones are here). That makes for a lot of checking in with electronics, unfortunately. I’ve gotten to the point where I meditate about a half-hour to an hour-plus every day. While it’s a priority in my life, there are days that it’s a struggle to find time for it all. Introducing “Playne” has added to this, and the last thing I need more of in my life is stress.

Sometimes I combine “Playne” with other apps to take advantage of the “Playne” ambiance while doing my favorite guided meditations. More recently, however, I’ve also used “Playne” as a way to emphasize unguided meditation, and that has allowed my meditation practice to mature and expand beyond the confines of a computer program and into the rest of my day. That is one of the greatest benefits of this program and the main reason why I have found it so valuable.

Peace In Puzzle Pieces

One unexpected thing that had a big influence on me in terms of feeling support from others was a jigsaw puzzle in the oncological radiology’s waiting room. It was a large puzzle with a lot of pieces. Every day for six weeks, as I received radiation treatment, I saw that puzzle in various stages of progress. Eventually, I started poking around at it, and often I would be able to add a piece or two. The next day I came, more would have been completed — seems like a lot of us were poking!

This served as a lovely metaphor for what we, as patients, were going through: cancer is a puzzle, and treatment offers pieces that we put together in hope of finding our way through. All of us were working on this jigsaw puzzle at different levels of ability. Some were stronger than others, some had better support networks, but everyone was shuffling along at their own pace, completing their treatment puzzle, piece by piece, day by day. On days when treatment seemed never-ending, there was gratification to be found in the progress of the jigsaw puzzle.

I had never realized that working on jigsaw puzzles was so soothing. Just as in mindfulness meditation where you focus on the breath, the puzzle offers an opportunity to focus on a particular pattern, color or shape of a piece. It requires concentration, but this concentration comes easily. You don’t have to make yourself focus, it simply happens as you search for a piece.

Eventually, my radiation treatment ended and I left a partially completed puzzle in that cozy waiting room for others to finish, but I longed for that familiar feeling of comfort and quiet. That waiting room had been an inviting sanctuary where my only responsibility was to practice self-care. I wanted that to continue. It wasn’t long before I’d found puzzles to work on at home. I chose the images for how they made me feel, and for quite a few months afterwards, working on puzzles was a meditation. My family played the role of other patients, and together we enjoyed the satisfaction of putting the pieces together.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are several of the puzzles I/we finished at home. Apologies again: as with most other photos in this blog, I never intended to post these online, so the photo quality is lacking. I’ve added info on where these puzzles can be found in case anyone is interested, especially if you’d like to see what the pictures look like under ideal conditions.

“Secret Garden” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): I was looking for a peaceful oasis and this image fit the bill. I loved the flowers and flying creatures, but particularly the koi, which brought a special zen to the picture. (Bad lighting – doesn’t do it justice!)

“Marvelous Garden” by Oleg Gavrilov (Bits & Pieces, 500 pcs, Amazon.com): I love peacock blue, the architecture smacked of Tuscanny and the flowers (yes, pink ones) completed the scene. This remains my favorite puzzle to date.

“Autumn Oasis II” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): Autumn means that Halloween/Thanksgiving/Christmas are coming up soon, and after such a miserable year of fear and cancer treatments, I was so looking forward to a joyous holiday season.

“Florence” by Eric Dowdle (Dowdle Puzzles, 500 pcs, dowdlefolkart.com but purchased at Costco): I missed visiting Florence during a European trip due to scheduling conflicts, but it remains one of my most-wanted cities to tour. Seeing Michelangelo’s David in person is on my bucket list! I particularly liked that this puzzle came with a little poster of the image that made putting it together a serene pleasure. The last thing you want is to get headache trying to match up teeny windows!

What Is Up With My Hair?

But let me back up a bit. My hair has been an issue throughout all of cancer treatment. As everyone knows, the hallmark of a cancer patient is a bald head. That’s pretty unmistakable. Being told you have cancer and waiting for test results is anxiety-provoking because — besides the obvious fact that you have freakin’ cancer — you don’t know the extent of your treatment. Being told you don’t need chemo is a huge plus. For me, this was because then I wouldn’t be a “full Monty” cancer patient, and my perception was that my condition would not be quite as serious as if I were going all in and having to undergo the full spate of treatments (surgery, chemo, radiation). The reality of this is debatable, of course, but for me, finding out that I needed chemo meant giving up hope of all normality. This wasn’t going to be like taking a prescribed medication. This was going to change me physically, and everyone would know.

I didn’t shy away from telling people of my diagnosis, particularly those who were going to see me on a frequent basis. I mean, who was I kidding?

I’d always had long-ish hair, but when it started coming out by the handful, the thought of leaving a hairy trail in my wake was unbearable. I entreated my husband to get the clippers and off everything went. My daughter was supposed to film the entire thing (I was bound and determined to record my experiences for posterity) but this whole episode was a little overwhelming and I started crying…and my sweet kid didn’t want to film a breakdown so she only took stills. I really wanted the video, but whatever. At least I had photos. My husband had fun leading me through an evolution of punk haircuts that allowed me to relive the 80s, but when it was all said and done, I felt better and promptly sent out the photos to close relatives. I got compliments on my headshape and was told that I had dainty elf-like ears. The world of cool Halloween costumes opened up for me.

And man, did I look weird.

So, for the next however-many months I was all about scarves and hats. I got used to always having something on my head because my dream of being the “cool bald chick” didn’t materialize. With my hair gone, I had a very good view of my scalp, and it looked terrible. I guess being a Northern European in a city on the same latitude as Morocco was not kind to my skin, and my scalp displayed the abuse it had suffered all those sunny, hatless days. I had some pretty incredible moles, and, look, I already had breast cancer – I didn’t want to have to deal with skin cancer too. My lid stayed capped.

Now, everything-hair was in a holding pattern until the end of my chemo. First of all, when you google “Taxotere” (one of my chemo drugs) and “hair”, the first entry that comes up is for a law firm that is planning a class action suit against the makers of Taxotere on behalf of all the women who suffered permanent alopecia after taking the drug. This is NOT what you want to see.

After all that, I was pretty impatient about hair regrowth. There is a small percentage of women who do not get their hair back, but it doesn’t matter how small that percentage is. When you’re holding your breath and waiting for your hair to return, you’re convinced that you’re part of it. To make matters worse, my hair had gone all white/gray so it was even harder to see. I gave in to the folly of reading about other women’s experiences with regrowth, and they all seemed to grow hair more quickly. Or not at all.

By this point, I looked like a cross between Yoda and Gollum, since a few crazy hairs had apparently not gotten the memo and decided to keep growing throughout my treatment. Not a lot, just enough to make my scalp look like it was undergoing an identity crisis. My eyelashes were still clinging for dear life, and I had high hopes of being able to emerge on the other side of this journey with some fringe around my eyes…but no. A few weeks after chemo ended, all but a couple of my lashes went the way of my eyebrows. Gone. Nothing quite like being hairless to make you look like an alien from a 70s sci-fi flick.

So I waited. I whined in my oncologist’s office, and cried in my counselor’s. I don’t have much faith when it comes to being patient and seeing how things turn out. My impatience was driven by fear. Every trip to the bathroom was another opportunity to stare in the mirror, trying to determine was that a shadow or a new hair? This was complicated by the fact that my previously excellent eyesight is changing and I’m not adjusting well to that. I forget to bring reading glasses and think that the world has just gone fuzzy, like that’s perfectly normal. To my glassless eyes, I still looked bald.

But at one point I was examining my forehead, where the hairs reeeeeally took their time coming in (what’s up with that???), and saw teeny translucent sprouts. Finally? Trip after trip to the bathroom mirror, squinting from every angle, the hairs were unmistakable. Yes, foreheads are great things, but I didn’t need so much of mine. And finally it was getting coverage.

Let’s fast-forward to now. I have hair. It’s white and I look like my kids’ grandma. But regardless, I have hair and that makes me so happy. Let me say it a few times: hair, hair, hair! And not only do I have hair, I have gravity-defying hair. It’s a few inches long and reaching for the stars. I use hair styling products with names like “taffy” and “putty” to keep it in place, but when I wake up in the morning I look like a Pomeranian. I didn’t even realize my hair could do that.

Note that I am not complaining. My eyelashes came back. My eyebrows didn’t, but that pulled me into the creative world of brow design. Once I got past the “my-brows-were-drawn-by-a-five-year-old” stage, I got into the look and expanded the rest of my make-up to balance my face out. In the end, I look more put together. At the same time, I don’t look like my old self. But perhaps that’s not so bad – I am not my old self inside, and that’s being reflected on the outside. Yes, sometimes I walk past a mirror and shock myself, but this journey has been transformative and I’m going to have to get used to that. As with everything, deep breaths.