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Illness Is Not Identity: Butterflies Are Free

Butterflies

“I only ask to be free. The butterflies are free. Mankind will surely not deny to [me] what it concedes to the butterflies!” Charles DickensBleak House.

If you’re not familiar with Bleak House, which is one of the most complex–and one of the most rewarding–of Dickens’ novels, perhaps you’ve heard this quotation in Butterflies Are Freea 1972 film (based on a play by Leonard Gershe) about a young blind man, Don (Edward Albert), who rents his own apartment to become less dependent on his overprotective mother (Eileen Heckart). As she still struggles for control, he meets his neighbor, Jill (Goldie Hawn), a “free spirit” who inspires him to become his own person. After she tells him that the Dickens’ line is her favorite quotation, he writes a song about his spirit learning to fly.

For several years, long before I was diagnosed with and treated for uterine (endometrial) cancer, I have thought of the butterfly as a personal spiritual symbol. Many cultures and traditions turn to this beautiful winged creature to symbolize the soul and other essential aspects of life, such as metamorphosis. Few things top the list of shattering changes more than potentially life-threatening illness. Yet, even when it is serious, illness is only part of our life experience. True, it sometimes commands center stage. But in the next act–or even in the next scene–some other, deeper aspect of who we are takes its star turn.

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By no means do I intend to diminish the supreme challenges faced by those who are debilitated by illness or injury or to dismiss uncaringly the anguish of those who have lost loved ones to terminal disease or early death. But the message of the butterfly is available to all, even to those who suffer. Because even if we sprout wings that don’t have the strength to free us from the pain and limitation of earthly life, they can still help our spirits to soar. If we don’t have the strength even for that, our spiritual wings can at least help us float gently on the soft winds of the universe as it continues on its infinite course, reminding us that we are part of all that is, ever was, or ever will be.

Having passed through the metamorphosis of serious illness, I think back to decisions I’ve made that both hurt me and helped me arrive at the place I now find myself. And I’ve had to face that many of the external markers of identity are now lost to time–reproductive status (first in menopause and now in the absence of organs), the joys and responsibilities of young motherhood (my only child is now a man), marriage and name change (one divorce behind me and a total of three last names), the comradeship of friends and colleagues (many losses and gains over the years), the pride and sustenance of career and income (gone and none at present), and so on. These things have shifted so significantly that at times I feel adrift in the cosmos, unanchored to earth or to anything that feels comfortable or familiar.

But these moments pass. And I realize that what remains after pseudo-identity is irrevocably altered is the emergence of what lies beneath and within, which can be surprising. Having lost so much, and having spent so much time alone confronting my very existence, I nevertheless have experienced an integration of the essential aspects of myself with how I navigate external life. I discussed some of these things in the March 14, 2014 post, “Reading & Writing as Therapy.” The message was simply this: Find, or rediscover, what you love. This tells you who you are.

It is my hope for all who face grave or passing illness, permanent or temporary loss, and terrible loneliness or even somber solitude that they can find their butterfly selves by turning inward to where they can see that the outward path is visible but ephemeral–and also by connecting with similarly affected, like-minded others, who can not only share their experience, but enter into it with them.


Just a few thoughts for the last day of March as I prepare to take THE PATIENT PATH in new directions. You may notice within the next few days that the URL for the site is now “thepatientpath.net” since I have just registered this domain name. I attempted to register “thepatientpath.com,” but a domain-name reseller had already snatched it up, I believe because visits to the site have increased recently. I should have acted sooner, a lesson I’m still learning–not only about such things as domain names, but about getting certain problems, such as postmenopausal bleeding, checked immediately (take it from me, ladies, and please reread the November 20, 2013 post, “Uterine Cancer Risk Factors”).

As we go forward, we will be addressing health topics in addition to uterine (endometrial) cancer, and some have already been written about in earlier posts. All topics will deal with health, healing, and well-being on various levels. I also hope that readers will feel free to comment and share their stories.

In the meantime, I plan to enhance the resources sections of the blog for the purpose of self-education and information gathering so that we can all continue to learn how to be the most important members of our own healthcare teams–and the stars of our own lives.

 

 

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My Current Story, Update: Uterine (Endometrial) Cancer–You Can't Unbreak Glass…but the Fragments Can Be Contained

Aqua Glass Desk Lamp - 2_50%

Lessons from a pretty, but fragile, aqua bulb lamp.

This story was updated on March 19, 2014.

Shattered Glass & Fragmented Spirits

Part of my personal treatment plan is to sort through all of my possessions–mounds of them, many of them paper records and memorabilia–and consolidate and clear out as much as possible. This is excruciatingly difficult. I am a collector of personal and business organization books and have poked my nose in most of them, but practical advice disintegrates in the face of emotional attachment to the things that give silent witness to your life. Coming face to face with the reality that our time here is finite has had the effect of making me yearn to locate, categorize, and memorialize “lost” mementos from a past that is quickly slipping away while simultaneously making me want to travel lighter and more open into my future. Most of my efforts thus far have been on the order of redistributing, rather than discarding, these things. But I feel the need to know what I have, and where I have it, before I can take bolder steps–I’m not quite ready for big leaps just yet.

I had just managed to clean up my home office to the point that I wanted to prettify it a bit and get it ready for whatever is next. The story of my career is difficult and painful and will wait for another time. At present, my work–my most important job–is to continue to heal and take care of myself while better managing my immediate environment–not only my physical home, but my personal world. So, despite not having an income, I decided to make a few small investments around the house to raise the level of order, calm, and attractiveness a little. Clearing out one small space or adding one fresh touch has powerful cleansing and lightening effects, and the more I do the better I feel. (That is, until I unearth yet more boxes of stuff–my things from my past and my grown son’s things from his past that he swears he doesn’t want–but I don’t quite believe him.)

A week or so ago, I wandered into Pier 1 and found the desk lamp pictured above, which has a white shade lined with the same aqua color as the pretty glass bulbs. I might not have chosen this lamp in isolation, but I knew it would look good in my existing office, which is painted in calming aquamarine colors. It looked so good in the office that I was then inspired to replace a utilitarian black pole lamp with one that matched the desk lamp. Then I looked at the “light naked” second desk in the office and thought I’d better buy a matching desk lamp while it was still available. So I ordered the second aqua desk lamp online and went to Pier 1 yesterday to pick it up, happy with my decision (a rarity).

Well, maybe because it was Ash Wednesday (although I’m not Catholic or a practicing Protestant), or maybe because I was overwhelmingly fatigued (although I’d slept OK), or maybe because I have a lifetime of careless habits (no “althoughs” here), I came home empty handed. I had expected the lamp to be boxed up, as the others were. But it was bubble-wrapped. The saleswoman gave me an explanation I didn’t quite follow, but assured me it wouldn’t have been wrapped if it weren’t in good condition. Nevertheless, she offered to unwrap it and let me inspect it (they don’t offer discounts for floor models). Everything looked good, and the sales clerk rewrapped it and handed it to me over the counter. I put it on the floor as she came around the counter carrying the shade, asking me whether I needed help getting the lamp to the car. As I was rapidly trying to figure out how to manage the lamp, the shade, and my purse, I turned toward the clerk, and the purse hanging from my left arm knocked the bubble-wrapped glass lamp to the floor, shattering those pretty aqua bulbs.

The clerk called her manager over, and they were very nice about it and ordered me a new lamp, returning this one to inventory as “damaged.” This could have gone another way, but I was grateful that these ladies were so gracious and professional about the situation. I apologized and told them I felt terrible, not because I was leaving empty-handed, but because I had “laid to waste” such a pretty lamp. It had felt so heavy and looked so sturdy with its solid metal square base; but in the end, it was quite fragile.

While thinking with sincere regret about being so impulsive and careless, I reflected on the paradox of sturdiness and fragility–this solid-based lamp had survived the handling of manufacture, transport, and store display for who knows how long and had remained upright and intact until circumstances (me) caused it to come crashing down, shattering its delicate heart. It was painful seeing those aqua shards inside the bubble wrap; but as the sales clerk said, at least the fragments were contained.

This seemed like a good analogy to human circumstances, but with a twist: as strong as life may have made us, and as sturdy as we may be on our own feet, some quirk of fate can knock us down at any time. The difference between a shattered lifeless object and a fractured living soul is what we do about it. The lamp had fallen and couldn’t get back up; it couldn’t be repaired–but I could order a new one. I, too, had fallen, but could get back up; I couldn’t order new body parts–but I could repair my spirit.

Maybe we all have a sort of spiritual bubble wrap around our own fragile parts–we may fall, we may crack; but the fragments can be contained, and our essential selves can remain intact. Our attitudes can shift. Our hearts can heal. Our spirits can revive.

Notes of Gratitude 

As I sort through my past, I feel keenly what I have lost. My physical losses are internal and invisible. My nonphysical losses are ephemeral and unseen. But I am thankful that all of these things have been a part of my life. Contentment may not be mine, but as spring approaches and I continue to mend, I realize that although I can’t restore what I once had, I can refresh my life. This is a solitary and mostly lonely process. The flood of support and attention I received at the beginning of my health crisis has become somewhat less as the situation has become the new normal and has been absorbed into my changed life–and other people’s perception of it. But as with the bereaved after a funeral, we are all left alone to cope with grief, loss, and an altered life after everyone goes home, back to their own lives and their own challenges.

Yet support still comes, now in an occasional gentle wave. Any act of kindness or caring is balm to the spirit. My hope for us all is that we can journey through life knowing we have our fellow travelers’ hearts in our hands . . . and that they can be shattered like glass lamp bulbs when knocked off of their (apparently) sturdy base.

Pictured here are two symbols of gratitude:

In an eerie portent of things to come, for my 60th birthday in 2012, my sister, Vicki Sue, gave me a “Kohl’s Cares” package of coordinated pink-ribbon birthday gifts–Kohl’s donates 100% of the net profit to support breast cancer. By doing something caring for me, she was doing a kindness for unknown others. The strange thing was that this scarf wasn’t so “pink,” but more a peachy salmon, the ribbon color for uterine (endometrial) cancer–with which I was diagnosed a year later:

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And last week, friend Kathryn and I had a lovely lunch in a local teashop, a very special place, at which she presented me with my first and only official uterine cancer ribbon pin:

Peach Ribbon 2

Finally, a special thanks to the ladies at Pier 1 for ordering me a new aqua glass  lamp. I promise to treat it with care.

A Bit More about “The New York Way”

In my February 20, 2014 post, I described “The New York Way” of delivering radiation treatment post-hysterectomy for uterine (endometrial) cancer and also discussed some side effects of vaginal brachytherapy. My short-term side effects are now subsiding, but about a day after the last post and a week after my third and final brachytherapy treatment on Valentine’s Day, I developed full-blown cystitis (constant irritation and burning on urination) and increased bowel changes (gas, frequent BMs, and some leakage). Apparently, these effects were right on schedule according to some of the online patient information I’ve come across. (I’ll update the technical information in a future post.)

Back around the winter holidays, starting a week after my hysterectomy, I had a bout of lymphorrhea, as discussed in the January 10, 2014 post. To make sure I didn’t have a fistula between the bladder and vagina, my surgeon had prescribed a “dye test” using phenazopyridine (Pyridium), pills that turn urine orange–and are also used to soothe the urinary tract for patients with an infection. (I passed the test–no orange showed at the top of the test tampons, and the lymphatic leakage stopped soon after.) I don’t know why, but he had given me several refills of the pills, so (without calling anyone) I went to the pharmacy and got more Pyridium to treat my cystitis. Note that these pills do NOT kill the microorganisms that cause UTIs, but I didn’t have an infection–just burning from the radiation. I took the pills for a week, and they did indeed help. I no longer have burning. The bowel issues have also improved.

What hasn’t improved much is the fatigue, which is worse some days than others. Often, it is related to exertion as I become a bit more active, but not necessarily. I am also waiting for the longer-term side effects to set in and believe I am just starting to notice some of those effects now. But I will discuss these in detail after my first post-radiation checkup, which has been pushed back from March 17 to March 25, when I will also have my first three-month surgical checkup. At that time I’ll know more about radiation effects and how to manage them and will also discuss more of “The New York Way” with my doctors as I continue to read and learn more about different treatment models.

But what’s on my mind now are effects that aren’t physical and healing that isn’t allopathic.*

*A system of medical practice that aims to combat disease by use of remedies (as drugs or surgery).


Other Radiation-Related Posts:

My Current Story, Update: The Art of Waiting

Click: A Few of My Favorite Things_#1

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Some of my favorite ways …                                                                                                                   to spend the time of my life.

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Click: A Few of My Favorite Things_#2

Waiting . . . something everyone who has ever lived has had to get used to.   Actually, it’s the stuff of life.

The thing is, the inertia of waiting is only a perception. Because while you’re waiting for one thing, another thousand things are going on. At certain times, of course, such as when you’re waiting to get the stitches removed from your head two weeks after having a skin cancer removed from your scalp or waiting to get your first vaginal radiation treatment after a total hysterectomy for uterine cancer, your focus tends to gravitate toward “the thing” that looms so large on the horizon. This is your emotional reality, though, and not a fact that the rest of your life stops and will resume again after “the thing” is all over. I think Franklin Delano Roosevelt had it right: “the only thing we have to fear is…fear itself.” This is not to say, however, that many fears aren’t justified. But expending precious life energy on what may or may not happen is a foolish waste of your most valuable resource: time–moments you’ll never get back.

The past few months have brought me many new lessons in how to wait. I received my cancer diagnoses–(1) first uterine and (2) then scalp–in November, but I had to go through a number of steps before I could have the surgeries required to remove the malignancies. Yet, interestingly, I found I was so busy either taking those steps or preparing for the next ones, as well as–and this is important–also giving myself small goals to meet each day, that I more or less accepted the “wait,” sometimes even feeling annoyed that the next procedure was interrupting what I’d gotten involved in. Most of the time, it felt more as if I was making slow but steady progress toward a goal than as if I was an inert, helpless victim of time.

Five days after I received my uterine cancer diagnosis, I started this blog. I poured a great deal of energy into writing and designing it, although I never planned it out. From day to day, I rarely had any notion of what I’d be writing about. But it fell into place fairly well because things kept happening or suddenly occurred to me while I was actively engaged in creating the next post.

Another thing I found myself doing preoperatively was “nesting.” The last time I did this was in the early summer of 1984, just before my son was born. I’d read about this–that instinct, hormones, or temporary insanity often overcomes expectant mothers, who feel the need to “feather their nest” in preparation for the new beloved arrival. Back then, I did things I’d never done before–and have certainly never done since–such as washing the walls of the house and stripping all the cushion coverings from the living room furniture to wash them and collecting all the new baby clothes and blankets to launder them and rearranging the large shelving in the kitchen because this was the only place convenient to bathe the baby and organizing all important documents so we’d be a legally secure family. . . . I’ll stop there. I don’t remember any more–and don’t want to.

Anyway, I found myself doing something similar on my own behalf before I had surgery to remove my no-longer-functioning-and-potentially-deadly reproductive organs. The Sunday before the Wednesday I had the colonoscopy and upper endoscopy and the Friday before I had the hysterectomy, I told my husband, Farok, that I really needed to clean the house. I wasn’t feeling that energetic, but I was compelled to get my nest ready for when I came home from the hospital. I also bought some new nightwear and reorganized the bathroom closet, where I keep things with which to take care of myself. The one thing I had intended to do but never did was food planning, but somehow this didn’t seem too important. As it happened, a couple of friends brought food over that lasted for several meals, which was great.

Now that the surgeries are over, I have the follow-up phase to take care of–the stitches in my scalp come out tomorrow, the vaginal radiation starts on January 23. I won’t lie–I do have anxiety about both and could easily fall into “rumination” and “obsession” mode if I didn’t deliberately turn my attention elsewhere or find other ways to use the power of my mind to help myself. Another mental technique I use to help myself through tough-ish times is to visualize myself acting as either my own parent or my own nurse. Imaging that I am caring for or guiding myself through what’s gotta be done. It really does work.

This weekend I spent more time on the blog and also did some household chores. And of course there was Downton Abbey tonight (poor Anna!), plus all the movies I indulge myself with almost daily. My stacks upon stacks of books are begging to be read, but it’s only been recently that I could start reading again because my attention and energy had all been diverted to matters of health and healing. And while I’m on the subject, I’d say this is a very good time to thank my local reading group at Twice Told Tales / The Moonstone Mystery Bookstore in Flemington, NJ. After I received my radiation schedule on Friday, I had to scramble to find help with transportation to each of my three upcoming treatments at St. Barnabas. Because Farok is leaving for India on professional and personal business next week, followed by a Sierra Club hike in Viet Nam (both planned before we knew what my life would be like–I was actually supposed to go to India as well), I will be on my own at a vulnerable time. So, a big, heartfelt thank you to three of my reading group friends who have each offered to take a turn transporting me to a radiation treatment. And, by the way, I have had very many enjoyable hours thanks to my book group, which has helped me fulfill my lifelong ambition of being a good reader.

My other lifelong ambition is to be a good writer. So here is another opportunity to acknowledge a group I’m very pleased to be part of–my writing group, which meets every other Saturday morning at the Hunterdon County Library. It’s such great fun and so gratifying to get together with creative counterparts who are not only very talented and insightful writers, but great conversationalists and good company. They are helping me make the transition from technical to creative writer, and although I have a long way to go, I’m enjoying the process.

If you looked at my “favorite things” at the top of this post, you’ll see graphically exactly how I’ve been spending my time, or soon will be, as my life slowly returns to normalcy. So, yes, I am waiting for some things to be over with and for other things to develop. But “waiting,” given the right attitude, is really another word for “living.” If you find yourself consumed with worry–or even eagerness–about something that will be happening in your world soon, remember that the entire rest of your life is still going on and needs your attention. If you identify the things you love most and that have a high priority in your daily life and put your focus and energy there, whatever it is you’re waiting for will be here before you know it–and you will have been a productive citizen of your own life while it was on its way.