Archive for the 'Cancer' Category

25
May
13

doodling like a rolling stone

Bob Dylan, the poet-singer-songwriter of the Baby Boom generation, in his 1965 hit, Like a Rolling Stone, asks plaintively:

How does it feel how does it feelto be without a home… like a complete unknown… like a rolling stone?

Between each of the song’s four verses, comes this haunting refrain—pointed, probing and challenging. The song references societal expectations of the 1950s and 60s, which may no longer carry quite the sting it did then; nonetheless, the refrain lives on timelessly in the Boomer Generation—invincible in 1960—not so much in 2013.

We are aging…sometimes gracefully, sometimes awkwardly. How does it feel and what does it all mean as we roll along toward the once, unthinkable senior citizen horizon? I am not a true Boomer, just an honorary one due to some life events that put me back a few years, but I have a good Boomer friend who wrote an essay for this blog about her experience of aging and transitioning. It comes complete with a graphic she calls a doodle.

April 15, 2013 • How it feels and what it means…

There’s a little ditty we used to sing as kids: Head and shoulder, knees and toes, knees and toes (repeat) while touching each of these body parts as a form of exercise. Now, in my senior years, it seems that there is a problem with each of these (maybe not my toes, but my feet). Memory is fading, can’t hook my bra in back due to bursitis and tendonitis in my shoulder, old knee injuries have been flaring up, and plantar fasciitis causes pain when I walk.  I was feeling old. As a former dancer, these physical losses take on a lot of significance.

Our church made plans to offer a grief recovery workshop starting late March by a specialist in that field and I was considering if I should participate to process my grief around aging. However, it was a ten-week commitment with homework assignments and I questioned whether I had the where-with-all to do the work.

I learned of Sybil MacBeth’s book, Praying in Color, from a friend and presented a short segment on February 23 during a weekend Lenten retreat at my church, where we all tried our hand at this form of prayer. I decided to use this method of spontaneous doodling with words and color as a process of discernment, but it became clear that I wouldn’t get my answer in 20 minutes.

Basically it sat there in my journal until a women’s retreat I attended in Santa Fe the following month. During a movement ritual I needed to sit down because my knee was complaining and I began feeling sorry for myself again because I could no longer move as freely as I once did. As we went around the circle sharing why we were there, a huge realization dawned on me. Seven years ago on March 1, 2006 I had a hysterectomy because various tests and scans pointed to probable ovarian cancer. As it turned out I did not have cancer, but if I had, I would not even be at this retreat because I would no longer be alive, as life expectancy with ovarian cancer usually does not exceed five years.

The next two nights I continued with the doodle, noting that I could be dead, but I wasn’t and asking why. The second night brought it to a near completion, but only after participating in a craft project with the group. In the afternoon we had walked out on the high-desert land to each collect sticks or a piece of weathered wood to create a “Spirit Doll.” There was an array of beads, feathers, ribbon, fabric, glue, wire…you name it…available to dress our wood into something that resembled…well, some sort of doll, I guess. I immediately went into a familiar insecurity, comparing myself to everyone else who would create something profound, more meaningful, and just plain better than anything I could do. So, with a slightly rebellious attitude, I decided I would create an alter ego. Using part of a pink boa around her torso, pink feathers in her hair, which was actually sagebrush, and sparkly netting for a skirt I called her “my lady of the night” who stayed awake nights for reasons different than my insomnia-ridden ones. With a few added doo-dads she was sufficiently garish and I felt satisfied.

Anne's Doodle Design

Back in my room the doodle grew. Of course there was much more happening in my thoughts and emotions than appear on the page but it is a good summary. And what I also realized was that I had created something meaningful in the doll; that in her flamboyant attire she represented not what I had set out to create but rather a celebration of life! I finally had a clear answer to the question I had posed several weeks earlier. My conclusion: Rather than grieve my losses, I need to celebrate the life that is still before me.

01
Apr
13

looking backward / going forward

Every now and again an old friend or acquaintance will come to mind and I wonder what they are doing now…where they are. Sometimes I Google to find out. Maybe it’s a way of measuring the length of my days in years? Some time ago I found an artist friend through Facebook that I’d known a dozen years ago and wrote about the encounter in my June 13, 2012 post, art then / art now. A few weeks ago I reconnected with another friend through Facebook that I’d known in the glorious, early 1970s (when some of us were still young and others, not yet born). That was great fun.

Last week…in a more serious mood…I looked for a person I’d known six years ago in a cancer support group. I’d been thinking about him for a while. I wanted to thank him for all the invaluable help he’d given me—help that changed the course of my recovery for the better. We both have a form of incurable lymphoma that can capriciously become active or lie inactive at will. I’ve been in remission for five years and wanted to know how he was. I Googled him, and found his name in connection with a cancer support group’s phone listing. I called and was delighted to find that he is a survivor and continuing with his cancer support mission. It felt good to send a message of thanks and affirmation. Many cancer survivors like to pay it forward, including me.

A few days ago, I thought about two persons I’d known from my days in the art world.  Despite that association ending badly, I Googled them hoping to find an avenue for constructive reconnection. To my dismay, I found pages and pages of articles linking them and the gallery to fraudulent misappropriation of federal grant funds from 2004-10. I was shocked and wanted to know what had happened. I began reading the articles. When I got to the FBI Press Release dated December 14, 2011 what I considered the most reliable—I stopped to take stock. My partner and I had known these women for many years. Until my last show in their gallery in 2002, we had considered them close friends. The exhibition—Inheritance: art and images beyond a silenced genocide—was a production showcasing Armenian-American artists and the Armenian people. It was nearly a year’s work and a major undertaking for me as artist, curator and producer.

A few weeks before the exhibition opened, our tax preparer urged us to ask the two women for an accounting of the money contributions that had been donated toward funding the show. Asking for an accounting touched off a firestorm of angry accusations toward us, and threats to cancel the show, which put me in a state of ongoing anxiety for the two months of the show’s run in the gallery. Naively, we assumed the contributions that came in from our contacts were earmarked and set aside. We had virtually no understanding of non-profit gallery operations at that time, and no idea of the potential threat this request to the gallery directors would be.

Historically, the gallery had been an important outreach to the community and an alternative for rising artists to the traditional, market-based gallery system. I do not know how the current situation happened, when, or why it happened. I only know my own experience in what would be my last show there. It had been my labor of love. We were fortunate to receive in-kind donations that included a four-color catalog, marketing/advertising help and a marvelous array of catered, Armenian food and drink for the opening reception.

Everything was in order, but the enmity that ensued—the demands and constant threats to close the show at a moment’s notice made a basket case of me for most of that time. Trust was broken on all sides. What had been friendship for many years became a battleground and a living hell. I didn’t understand it then and mourn the emptiness of it all now. I am sorry to have lost the friendship we had with these two very interesting women, but in light of this new information I am thankful to be on this side of current events…thankful…but still sad to have all that collateral damage sitting in the roadway of my past. I cannot think of it without great regret for relational carelessness and wasted time.

Looking back, I remember the government shutdowns of arts funding hitting the small enterprises hardest. I am not excusing anyone or anything, merely seeing two sides of what has become the vanishing coin of the power-Study in time–3x2.5elite. I have compassion for these two people, regardless of circumstances, because I knew them at their sincere best…maybe not as deeply as I’d thought, but well enough. We are all looking for our way…our path in life. I am sorry about detours and sink holes and broken pavement. I do not know where these women are today, or how they are coping. There is nothing online past December 2011, so I assume the allegations are still pending. I am a bit of an idealist. I love resolution and reconciliation. I would like that with these two, but I dare not dream of it. I don’t really know how to swim with the bigger fish and my skin has not yet hardened. ~¿

Waiting

24
Jan
13

something on my mind

Last week, in an Oprah Winfrey interview we heard Lance Armstrong, the world-class Olympic cyclist confess to having used several performance enhancing drugs to achieve his string of seven Tour de France medals during the period 1999 to 2005. These medals were stripped from him late last year, and recently the Olympic bronze medal from the 2000 Sydney games as well. Lance is a proud man, a fighter—a winner at all costs sort of person. Oprah did a magnificent job of drawing him out from shadow to full light truth. She did this by offering him kind, compassionate support all the way home. He needed that and she, out of her storehouse of experiences, could give it. I don’t think she skipped a beat.

For two hours I watched and listened to two amazing persons reveal themselves to the world: one a fallen celebrity newly discovering his feet of clay, the other a celebrity interviewer/entrepreneur who has never hidden hers, even from herself. This is a distinction of importance as I look through the pages of my own book of life. I find identity in both areas and I am not at ease.

I am annoyed with Lance Armstrong, not for the doping, arrogant lying and power-driven will to win, win, win, but for the cancer mythology he helped to perpetuate through the LIVESTRONG theme of the foundation bearing his name. The foundation has done good work and raised millions of dollars for research, but it did that based on Armstrong’s own cancer experience turned into the thematic slogan: LIVESTRONG. Many thousands of people carried this message to heart—persons unlucky enough to have contracted the disease, were caretakers for them, or otherwise touched by the disease.

In 1996, Armstrong was diagnosed with late-stage, metastatic, testicular cancer that had spread to his abdomen, lungs and brain. He ignored the warning signs at the early, easily treatable stage of this cancer, common in men aged 15-35. Had his body not been as fit as it was, he may very well have been a statistic instead of a survivor of heroic proportions. LIVESTRONG worked for him because it was his personal modus operandi. People want and need heroes. He was a winner, so the slogan became a word to live by for many, but not for me. I survived cancer and didn’t have the strength to live strong for a very long time. I simply survived. It took many years to overcome the side effects of the treatment, some of them permanent.  I am still surviving. There is a 50/50 chance that my cancer will return at some point. I live with that daily. Is that living strong or living true?

The yellow LIVESTRONG wristband always turned me off. I didn’t know what it meant and still don’t. In the absence of broader knowledge of this disease, responsibility for outcome tends to shift to the sufferer. How does one live strong when the drugs that flow intravenously through the body every three weeks (or less) leave you chemically depressed, thin as a bone, bald as a bat, sick and wobbly as a toddler learning to walk? Does that mean soldiering on through, fighting on through, or what? Cancer is still incurable. Oncology speaks of remission these days, not cure. So, is remission the goal of living strong? Is that what is meant by “beating it?” I don’t know. We see the happy faces of cancer survivors in commercials and advertising. We don’t see the thousands of people permanently disfigured and/or impaired by the side effects of these chemical cocktails, nor do we understand that each recurrence of the disease further weakens the body’s ability to counter. We don’t see the epitaphs of those who apparently didn’t live strong enough to survive. We aren’t ready yet to admit that the war on cancer, started 40+ years ago by President Nixon, has not produced cure. Treatments are better and drugs are becoming smarter, but it is still treatment that will be deemed barbaric some hundred years or so in the future.

I would like to hear another interview where Armstrong takes responsibility for misleading the public into thinking a catchy jingle could make us all strong survivors. We aren’t. If he does this he will be a true leader and a strong advocate. Cancer is still a dark thief riding a dark horse in the darkest of nights for most of us.  Both my niece and my sister lived their cancer as best they could…some might say strong, but the endings were not pretty. After Adopted Daughter died of cancer, I found the yellow bracelet among her things. I recoiled at the sight of it and tossed it out. My loss was too great to even look at the talisman she thought would help her. If I had it today, I’d take a scissor and sever the LIVE from the STRONG. I’d throw out the STRONG and pin-up the LIVE in my studio to remind me of what surviving is all about, at least for me: living authentically, gracefully and joyously.Type Embellishments_H 36pt_white.

Postscript:

1) My personal cancer story, Dying to Live: My Cancer Odyssey, was written in 2007 and can be seen on my website: www.inheritanceproject-2.com – project 5.  2) Reports on Lance Armstrong, the foundation, the interview, other cancer survivor’s opinions can easily be found online. Your comments to this posting are welcome.

21
Jan
13

an unexpected sabbatical

I’ve been on something like an unexpected sabbatical since my last posting on this blog (June 13, 2012). My world has turned round and round, upside down, right side up and sideways. The sale of our Frank Lloyd Wright house took on shady tones and bogus proportions that finally were unacceptable to us. When asked to reduce the price to less than half its worth, it took us only a moment to flatly refuse in unison. We shifted gears, reclaimed the house and promptly put the smaller house—our downsize house—on the market instead.

July and August were full of heavy packing, lifting, and moving—box- by-box, carload-by-carload, all day, every day until Two Men and a Truck came for the furniture at the end of August. We were not just moving our living quarters; we were moving a studio as well. Despite having either sold or given away lots of things during our move to the smaller house on Audubon Road, the volume of stuff was staggering. I started the job with gusto mid July and ended with a torn meniscus in my knee shortly before the actual move. Since I had didn’t have a lot of experience with physical injury, I paid little attention. There was a job to do and a goal to be reached.

We were excited and full of hope at coming home and starting over. Thinking to put the past behind us, we planned to live in the spacious old house in a new way. Ballroom 2We’d done a thoroughly beautiful renovation on it and lived there for seventeen years before moving to Audubon Road. It suited us in many ways, but there were some rooms that just never felt right to us, no matter what adjustments were made. We concluded that we’d been trying too hard to live there in a more formal FLW, prairie style. So the plan was to use the rooms in a different way…color outside the lines, so to speak. The most notable change was our decision to keep the 23 x 15 foot living room clear for large gatherings of friends and family, music and dance events to accommodate our current interests. We call it the ballroom. Here is a shot of the southwest corner of the room, showing the expanse of oak throughout and a great dance floor.

Once in the house, we felt an immediate sense of being at home…as though we’d been on assignment somewhere for four years and finally came home. It was glorious and it was fun. This was where we belonged, without doubt. The tenants we’d had were good people, but despite the arrangement we had made with them, they really had no investment in the place, so we had a lot to do in addition to the changes we needed to make for ourselves. The house spoke to us and we returned the greeting a hundred-fold, but my knee was steadily worsening and I was unable to dance. The big beautiful music/dance room stood waiting. With my oncology appointment looming (always a point of anxiety), I began a generalized worry pattern that pretty much centered on the idea that dancing was all over for me. I’d been too proud of my ability, so I thought; my body was now showing its true colors.

Finally, at the insistence of my very good friend, whose dancing days made her an expert on injured knees, hips and other parts, strategic to dancing health, I made an appointment with an orthopedic doctor. The MRI confirmed frayed meniscus in my left knee, a product of aging wear and tear, made worse by packing, schlepping and cleaning on hands and knees with relentless determination to leave the little house pristinely ready for the market. The doctor suggested surgery or physical therapy that would strengthen my quadriceps enough to relieve the pain.

I chose physical therapy and came home feeling hopeful enough to meet with my dance teacher for some gentle, stretching, body movement. It had been nearly three months; yet, under her direction, I was amazed at what I could still do. I was floating on cloud nine after she left. It was time for lunch…still floating,  I placed a piece of my favorite Middle Eastern lavash in the toaster while I went about searching for something in the pantry to go with it. (This lavash is very thin and needs only thirty seconds to heat.) While six feet away, standing on a stool in the pantry, something bright caught my eye: serious red flames shooting up from the charred lavash toward the wooden cabinet directly above. I told myself to stay calm and get to the toaster before alarm bells (or worse) went off. I got quickly down, protecting my knee, I lunged forward, jamming my left foot into the leg of the stool I’d been standing on and sustained a spiral break in my toe and an enormous hematoma. I hobbled to the toaster, unplugged it and carried it (still flaming) out to the yard, all the while telling myself I had not broken anything. The kitchen was smoky. Windows went up, the fire alarm got disabled and the pain increased; reason returned: I had broken a left toe, a very sore left foot and a damaged left meniscus. Agony! Bad luck! Misery! No dancing for me now, for sure! My glass was not half-empty…more like nearly empty.

Ice, ice and more ice. Ibuprofen. Homeopathic Arnica and Symphytum. It was two weeks before I could wear anything but a “glamorous” orthopedic post-op shoe and four weeks before I could manage a shoe with a big cutout on the side. I was limping along with a cane, feeling awkward and immensely unlucky to say the least. The doctor said it could take three months to properly heal. After six weeks, with the help of my cut-out shoe, I started physical therapy. Four weeks later, my quadriceps were strong and I was back! No surgery required.

In the midst of all this came Thanksgiving with all its hustle, bustle, worry and scurry—our first big dining event in the ballroom. Thankfully, it was a great success. Five days after Thanksgiving Day I had a strange sore throat and cough. The next day was my six-month oncology appointment (never a fun trip). My lab tests were very good, so I didn’t think much about the sore throat, since it seemed to be improving. The following day was my last physical therapy session. I was unusually tired and low on energy with muscles more sore than usual. The day after came with chills, fever, gas, bloating and overwhelming flu-like tiredness. It was the first of December and I rallied to take the granddaughters to the town’s Frosty Fest pageant. It’s total fun to be with kids at Christmas. We had a great time…Santa, reindeer, cotton candy, hot chocolate…joie de vivre!Frosty Fest Composite

The next day my illness began to slowly return, but my youngest granddaughter, Miss Pink’s, birthday party was scheduled for that afternoon at the dreadful house of grown-up horrors called, Chuck-e Cheese’s. We had to be there. J and I soldiered through the noise, the din and the obnoxious urging to be happy, happy, happy; aren’t we all so happy today??? By the time it was all over and done with, and we were driving home to peace and sanity, illness overtook me. We had to pull into a parking lot; I sat on the curb, shaking with chills and gastric distress for fifteen minutes while my body decided which way it was going to go, up or down. Once home, I went to bed and prayed for recovery. Many weeks of illness ensued, making many return visits that simply would not stop. Since my blood work had been good, I could set aside my habitual fear of illness being cancer returning in cloak and dagger fashion. Nonetheless, I was really sick for weeks and not able to stay well for more than a few days at a time. My doctor suggested an immune strengthening regiment of elderberry, astragalus, and two homeopathic medicines to be taken regularly for four weeks. I am starting my third week of this regimen and feeling quite disposed to continuing until the robins and blue birds return and this unseasonable Midwest weather pattern gives way to proper spring days. We’ve set up a bird bath and feeder to encourage them back into our daily life.

During the course of the injuries and ensuing illness stretching into January, Incarnation Body and SoulI’d lost my raison d’être as an artist. Only dancing made any sense to me. I watched many dance films to stay connected to this. Last week I looked at the computer and heard writing and visual art calling me to return to them as equal partners with dance. I don’t know exactly what it was that brought me back; I think it best to let go of so much knowing anyway. I’m back in my house, looking to the future—not as a younger woman would do, but as a woman in her seventh decade with a lot of history, a 50/50 chance of cancer returning one day, and a mind that processes time differently than I did in my fifties and sixties. I am at yet another point of transition and coming to understand that life is all about transitions. Nothing is permanent. Only now is here. Today I am glad to be writing again, composing visual art, dancing, and by grace, moving forward.

13
Jun
12

art then / art now

I need to reorganize the house I’ve been living in for the past four years!

In 2008, we moved from a beautiful Frank Lloyd Wright house to a small, unassuming, 1960s tri-level with joyous expectations of becoming part of a particular church community in the neighborhood. Shortly after moving the housing market fell, leaving our FLW house without a great many qualified buyers. At the same time, we entered into what became a long, painfully drawn out series of backwards and forwards efforts to become part of this church. Toward the end of that first year my sister died and I was heartbroken. Then partway into the second year our dear friend Bettina discovered her cancer was on the rise and she moved in with us. We were a chosen family of three working for inclusivity until the end of May, when the church body proclaimed that it could not, would not make the leap to inclusiveness. We were stuck with two mortgages, taxes, and much deep bruising around the heart and brain. By January of 2010, when it was clear that her cancer was unstoppable, we turned our home into a hospice dwelling encompassing all of us. Then, when she died on March 6, 2010, my world fell apart for a very long time.

We lived here in this little house for four years with shattered dreams and could not make it a home. Now we are on the brink of finally selling our FLW house, albeit at an enormously reduced price. It is time to move into this unassuming tri-level and make room for the next chapter of our lives. Making room means re-organizing and that requires cleaning out and thinning down my files…all those things I’ve carried around thinking that they will be needed at some future time. As I am in my seventh decade and climbing, I think the future is now.

The process of reducing files requires opening and looking through them. I could only manage four drawers without mental/emotional exhaustion overtaking me as I walked back into my life, folder after folder, making decisions that sometimes brought unwanted memories to the surface. In one of those folders I found correspondence with a friend from the past—an artist from Armenia whom I’d met a decade earlier when Judy and I were visiting friends on the east coast. It was a period of my life when I was doing a lot of genealogy in an effort to understand my heritage as a building block for knowing myself. This period culminated in an exhibition I produced involving nine Armenian/American artists.

Inheritance: art and images beyond a silenced genocide. (The electronic version is hosted by the Center for Holocaust & Genocide Studies, University of Minnesota.)

Curious about this old friend and somewhat lonely for people of my own ethnic temperament, I looked him up online and found he was here in this country, with a partner of six years and still a practicing artist. I sent out a Facebook friend request, Twittered and emailed him at the art center address where he teaches ceramics. About a week later I received an email from him that made me happy; he is a person like myself in so many ways, and one of the few remaining links to my own heritage. When he asked so plaintively why I got out of the art world, I had to give a brief history of the past decade since I’d last spoken with him. Haven’t had a response to this yet…must be busy…

His question brings me front and center, having been asked by others from time to time: Why did you get out of the art world…why would you? Revulsion is one answer. Cancer’s clearer vision is another. I am a professional artist gone AWOL. There is an article in the New York Times—How the Art Market Thrives on Inequality—that simply renews my sense of revulsion. I recommend reading this for all art lovers. It’s educational.

I will always be an artist. That is my temperament and training and it filters into everything I do. Some have questioned why I pour so much of that artfulness into the church I attend when they see so little reason for doing so. My answer is: Why not? The Church having separated itself—to its own detriment—from visual art at the time of the Reformation, is in desperate need of beauty for soul’s nourishment. I can do it and it gives me pleasure rather than pain. When I hear that someone’s experience of the sacred has been enhanced by a bit of beauty I’ve had a hand in providing, I am blessed, because I’m acting in accordance with having been Called by Name back in those gloomy days of cancer treatment and recovery. Clearer vision, that’s the reason.

Art created for one’s own pleasure is personal and edifying, but in a broader, societal sense, it is one hand clapping. Art created out of one’s own spirit and shared freely with others is two hands clapping—communication, pleasure and edification all around. As many of my friends and acquaintances know, I’m big on movement, hands, feet, whatever. Clapping counts.

Now I go to my weekly dance class where I can be art as well as make it…where I can be beauty as well as behold it.

This is the street where I live now…

08
Feb
11

longing for home – part 2

I have been longing for home since I first experienced what the mystics call the thin place, during my *cancer treatment and recovery (2006/7). I cannot describe this experience in words. I would need to sing it, chant it, dance it. It was life-changing. Since then I long for home from time to time—the place from which I came and to which I will return. I long for it the way a tired child longs for comfort and rest.

Two years ago I walked with my sister Florence, to her last breath. A year ago I walked, talked and sheltered my adopted daughter Bettina, to her last breath. The first and the last breaths of life are the most sacred moments of life—God given at birth and God received at death.

I was privileged to do this, yet it all leaves me feeling stranded sometimes—alone with unnameable yearnings. Since my cancer experience I have become highly aware of the transience of life on this planet, and have sought to live respectfully of the time I have remaining. Since losing Bettina, I am also becoming sensitized to the losses that pile up around us as we age. People die and leave us one person short of a full deck! As my mother aged, I remember her saying so wistfully a number of times: “Everyone is gone now…I feel so lonely.” She lived to be 91 and truly was the last survivor of her clan. We were not close. I did not understand her sadness then, but I do now.

My respect for time, which has taken the form of a desire to participate meaningfully in the life of the church, waxes and wanes as I realize how much more urgency I feel for change than does my Mennonite Church denomination. The disparity can be stultifying and sometimes quite painful, especially regarding the hot-button issue of inclusion, an intrinsic extension of our peace and justice values.

I am a catalyst by nature…one of those annoying people on the side-lines who are always urging the assembled majority toward more. I do not yet know how to carry this attribute without it becoming cataclysmic! I live and breathe in an ethnocentrically based denomination with cultural leanings toward cautious introversion. This profile contrasts dramatically with my own background and personality and I feel like an outsider for a number of reasons. I don’t really know where I would fit, or if there is a fit out there for me. Probably not, given my idealism. Certainly not in either the Armenian Apostolic or Armenian Evangelical churches. I am an anomaly.

*****

It has been a difficult couple of years for living without dying. Now, as I face into the anniversary of Bettina’s last weeks, I hold memories in one hand and the present day in the other. There are days when I could really use an extra pair of hands to stir all of this into a drinkable soup.

(Curiously…just a few minutes ago, an extra pair turned up via email. You’ve just got to love this electronic age every now and again.)

Yes, I am a cracked jar and a ringing bell. I have walked through many storms, received and lost many oars and paddles. The ancient river bed is indeed muddy. I want to dance when my denomination, with all its goodness, prefers to stand, pensively waiting. Why would I not long for home?

(*For an account of this see Dying to Live on my website.)

05
Jun
10

june 6

This is the 3-month anniversary of Adopted Daughter, Bettina’s, death—exactly 13 weeks. The few weeks following were sometimes numb and sometimes sharp, but I was busy with preparations for her Memorial on March 27. Once that was over it seemed like life became mostly gray and I have been slogging through from oasis to oasis ever since. This is grieving 101.

My big sister Florence, a mother to me, died 2 years ago of T-Cell Lymphoma and I grieved, but in a different way. My sister and Bettina were my cancer buddies. We understood each other…walked with each other. I am the only survivor and there is a deep loneliness to that. What more can I say? Cancer: I wrote about it on my website, inheritanceproject-2.com, Project 5, Dying to Live. Check it out. No sugar coating. I write about how it really was. Cancer…the Black Plague of the modern age. I’m thinking of doing a similar project about how I experienced care giving. How it was and what it meant to me. I’ll have to give this some serious thought. Might be too soon. In the meantime… Love.

My soon to be new grandchildren are coming to visit in a half hour. Darling Daughter is getting married. Life goes on. I will write about this too and show you pictures. Grace.

05
Apr
10

from dark to light

Continued from Lessons in Grieving, April 1.

The next day gradually took on a better hue except for the visit I had to make to my oncologist the following day. I was not looking forward to any part of it and anxiety was floating overhead. I’d never had to go alone before and the prospect was unpleasant at best. It would mean a trip via expressway and toll road into the city—finding my way to the parking lot, then across the sky bridge to the Lurie Cancer Center on the 21st floor and finally just being in that graceless environment again. Five weeks of care-giving and five weeks of grieving didn’t set a positive stage for this return engagement, but  I knew I had to do this (learn to take myself so the Big Dawg wouldn’t have to use vacation days). I just wished I didn’t have to go alone. I couldn’t think of anyone to ask, so I didn’t. Then, as a gift from heaven, a friend offered to come along. This was amazing because I knew the medical environment was not her cup of tea, so I breathed a prayer of thanksgiving and promptly took her up on the offer as she is a veteran highway traveler and would be helpful, along with my newly acquired GPS, which I’d not yet used.

The next day was warm and sunny (unusual for March 31). We set out promptly in the afternoon and found to our surprise that traffic was unusually light, which put us in the parking garage about forty-five minutes early for an appointment that traditionally is never on time. Elevators are not her thing, but twenty-one flights preempted her inclination to take the stairs. The elevator door opened in less than a minute and there we were. We walked in, presented the parking ticket for validation, and were told that the lab was running on time, and I would probably be called soon. Soon? That would mean early because we were early! This was shockingly unbelievable.

Not only were my labs done early, but pleasantly as well—the technician even seeing to it that I would see the doctor directly. (That would be a first.) My friend and I no sooner sat down in the huge waiting room again, than the beeper went off, a door opened and my name was called. This was looking like the eighth wonder of the world. Early. Everyone was early, relaxed and pleasant. Yes, the eighth wonder to be sure. Once we got into the exam room, the ninth wonder was about to unfold.

They had had several cancellations that day, so for the first time in the four years that I’ve been an oncology patient, the medical people had time, not only to talk to me but to listen as well…listen with heart, not just mind. I was able to tell the doctor about my experience as a care-giver, which I think was heard well and profitably. (Thank you God.) When I said, “I don’t know how you all manage to work in oncology,” I heard something I’d never heard before.

The doctor said, “Oh, but we have success stories.” I had to question that, as I’d come to dread cancer in all its thieving forms. “Yes, she said, ‘You are one of our success stories.” Imagine my surprise, since it had taken me nearly three years to recover from it all.

“Success,” I queried?

She went on to explain that I am in full remission, and although my follicular lymphoma will probably recur (five years or more), it will not again transform aggressively and will be quite treatable. Then she told us that lymphoma—a cancer of the lymphatic system—is more treatable than solid tumor cancers, and that treatments for lymphoma are developing more rapidly and more successfully than treatments for solid cancers.

This was news—big news to me. For four years I had expected to have to go through the dreaded R-CHOP again and probably end up dying within eight to ten years as my sister had done, because each recurrence and treatment weakens the body. I felt like I’d been given my life back…that I could once again entertain the idea of  making art into the sunset. I had three lovely upbeat days with wings outstretched and then returned to earth. It had been a good flight…grace poured out like a river.

Life goes on. Unless I am hit by a bus, I will probably still be here when some of you younger folk start looking older. And when you do, remember, I was there first and told you all about it 🙂

(This is a newspaper photo I had for a few years prior to my cancer diagnosis. This 92-year-old lady was my hero. I’d planned to be just like her…making art into the sunset. After cancer I’d taken the picture down and filed it away. Now it’s back, more as a reminder than a goal. Who knows the mind of God. Not I. And that’s a fact!)

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13
Mar
10

one week later

Saturday, March 13, 2010  —  I wake up to a dream I don’t remember, but feel sad and helpless.

One week ago adopted daughter, Bettina Ortiz, died at 2:15 p.m. with her nurse and adopted family around her (see Holiness, March 9). She had slipped into a coma during the night. I had been in a psycho/emotional coma equally as long and longer. We did this together. It was a natural ending to the team work of Tina and Mamacita. Yesterday her ashes arrived in the bronze container I chose, and she approved, on the preceding Wednesday. This engraved, bronze box is now sitting on the floor where her bed used to be…next to my sculpture called Innocents, for the victims of 9/11. The box will stay right where it is until I can think about what to do next. She said I could do anything I wanted with the ashes, but that she wanted Frankie’s ashes added to hers. (Frank was our nearly 20 year old cat who slept with her toward the end, but died two weeks before she did.) We will do that…later. Today we tend to unraveling and settling the affairs of her estate.

My unremembered dream stays with me as sadness. A recording of Jacqueline Du Pre  playing Haydn and Boccherini pours out from the living room. This is music I listened to and lived with while I was sick with cancer in 2006, just across the street from adopted daughter…also sick with cancer.

All this week Richard Rohr’s email meditations dealt with Suffering. Today the meditation is adapted from Things Hidden: Scripture as Spirituality, p. 25:

Pain teaches a most counterintuitive thing—that we must go down before we even know what up is. In terms of the ego, most religions teach in some way that all must “die before they die.” Suffering of some sort seems to be the only thing strong enough to destabilize our arrogance and our ignorance. I would define suffering very simply as “whenever you are not in control.”

If religion cannot find a meaning for human suffering, humanity is in major trouble. All healthy religion shows you what to do with your pain. Great religion shows you what to do with the absurd, the tragic, the nonsensical, the unjust.

If we do not transform our pain, we will most assuredly transmit it.

If there isn’t some way to find some deeper meaning to our suffering, to find that God is somewhere in it, and can even use it for good, we will normally close up and close down. The natural movement of the ego is to protect itself so as not to be hurt again.  The soul just wants meaning, and then it can live.

And he leaves us with this Mantra: “God, help me find you, even in suffering.”

09
Mar
10

holiness

My last posting on this blog was Thursday, March 4, 2-1/2 days before my adopted daughter, Bettina Maria Ortiz passed from this world to the next. I had been careful not to say too much about her illness and approaching death. We kept another blog going called Longing for Light where she kept in touch with all of her friends and relatives. This blog, Called by Name was where I spoke about my thoughts and feelings and those were very intimate and personal.

My partner and I met Bettina about 13 years ago through mutual friends. We introduced her to my biological daughter (Darling Daughter) and they became friends as well. We grew into a family very quickly. In those 13 years we had many adventures together—a chosen family of adults. Big Dawg and I lived within a block or two of the “daughters” and enjoyed a small sense of community—something BD and I sorely missed since leaving a Christian communal church many years earlier. Life rolled along in hills, valleys and meadows until the summer of 2006, when I was diagnosed with stage 4, non-Hodgkin lymphoma, followed 2 months later by Bettina’s diagnosis of stage 3+ ovarian cancer.

We were cancer buddies, understanding each other at a place only other cancer people can know. Sometime in 2007, when the life threatening cancer we’d both endured shook our hearts and souls, we began to silently adopt each other: adopted mom and adopted daughter. Then we all began attending church together. Walking with other Christian hearts and minds, we encountered many thin places where the division between the holy and the ordinary seem very thin. All of us grew close in this adopted family, but the bond between Bettina and me seemed at times set apart…and so it was: adopted daughter/adopted mom.

When Bettina’s cancer recurred a 4th time in January/February 2009, we asked her to come live with us so that BD and I could take care of her. We did a major revision of households, complete with turning our dining room into her bedroom and having our meals on a picnic table in the kitchen. She joined our household one early weekend in March, 2009. We hoped she would be the exception to the  ovarian mortality statistics. We became convinced she would be and dreamed of selling our house in 2 years, buying an RV with a satellite dish and a Peace sign, putting on tie-dye shirts, and roaming the country as poster girls for inclusivity, Jesus-style. We called ourselves the wild ones…in terms of Mennonite church culture, we were.

Then in December 2009, concurrent with my news of complete remission, came hers of yet another poor CA125 lab result. Her last remission was only a few months. The cancer was back and by January there was nothing left to be done. Her body did not respond to Tamoxifen and was not able to accommodate another chemo cycle. At her oncologist’s suggestion, we made a visit to a palliative care doctor on January 25th and left her office with a contract for in-home hospice care. We were already in a mild state of shock when, by the afternoon, hospice appeared at our door ready to serve. For the next 2 days, there were visits by nurse, doctor, social worker and chaplain, as well as deliveries of drugs and medical equipment. Our lives took a 180 degree turn.

Through the next weeks Bettina began a leave of absence from her job and set about putting her affairs in order on numerous levels. By the third week oxygen was required. Enter Darth Vader the O2 machine, noisily and rhythmically supplying life sustaining oxygen to her increasingly compromised lungs. After a bit of time the uninterrupted hissing and hewing became comforting to me. The morphine, Lorazepam and Remeron kept her in a relatively pain-free state allowing her the pleasure of visiting with people as well as giving and receiving love and support through her blog. In the night time hours she was fond of listening to music, especially the songs from the Sing the Journey CD, on her little Mac Laptop. Toward the end of her time she’d found Comme unsouffle fragile on YouTube and would fall asleep to it. I would often creep down the stairs to see her with her head phones and eyes closed in the blue light of her half opened computer.

During these last 5 weeks of her life she earnestly sought God and was increasingly filled with the light of God. Her last public appearance was at our church on February 28, where she shared her thoughts and insights in a meditation/sermon. The whole service was beautifully constructed around her…songs, scripture, sharing and communion. She, the pastor and worship leader served bread and wine to the entire congregation, giving each person a special word just meant for them.

By 5:00 that evening she began a serious decline that gathered momentum to the moment of her last faint breath on Saturday, March 6 at 2:15 p.m. It was a very painful, but holy day. BD noticed a flock of Sand Cranes circling high up in the sky shortly before the hospice nurse arrived. A few minutes after her arrival our pastor came too. This is our pastor’s account which she posted on our church listserve:

I arrived at Bettina’s bedside early this afternoon. Her nurse had just gotten there and turned out to be an invaluable part of the spiritual circle around her for her last hour. After taking her vitals and confirming that Bettina was in a coma, the nurse helped make the decision that she was ready to be taken off oxygen. She removed the tubes and then clicked off the noisy oxygen tank, resulting in the first blessed quiet that house had seen in weeks.

The family, along with Bettina’s oldest friend, the hospice nurse, and I gathered around Bettina’s bed. The nurse asked if she had some favorite music, and we all answered in unison, “Sing the Journey!” We put on her favorite “Sing the Journey” CD’s. Her labored breathing eased some, slowed, and at long last she simply didn’t take another breath. She had peacefully slipped away while the choir sang, “Listen, God is Calling.”

Close friends from church and work colleagues came to the house during the next four hours. At 6:00 pm, her body was carefully and respectfully taken away for cremation.

This has been a holy day.

It was my privilege to be Bettina’s friend, teammate and Mamacita…to love and care for her to the very end. I have learned and am learning a great deal about holding on and letting go, the theme of our denomination’s Lenten season. I am also learning a great deal more about suffering than I ever thought possible.

This will may be one of my last postings on this sight for a while. I will be tending to Bettina’s email and blog, Longing for Light. You are invited to visit there for more information on Bettina’s story.

Sandhill Cranes Migrating Southward

Photo by Todd Friesen




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