Posts Tagged ‘Lymphoma

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.

27
Feb
12

Mondays not Sundays

In the 1970s I was a member of an intentional Christian community north of Chicago. It was a mixed bag of positive and negative experiences in those days. Living in Community was a total immersion experience with shared purse and decision-making. The positives could reach beyond imagining and the negatives could inflict deep wounds that only confession and forgiveness and the passage of time could heal.

I met my life partner there. We left together at the end of a very dark time, re-entering a world that had changed in a myriad of ways. Time passed…30 years to be precise…with the best aspects of community living ingrained within us. Although we prospered in many ways, we could not even remotely re-assemble the best of those times. These were years of growing and learning the ways of the world. We did well.

In 2006 our world fell to pieces when I was diagnosed with non-Hodgekin lymphoma. I survived the attack of the cancer beast, fell in love with God again, and a year later found myself  returning to the church, which was and still is, in change-process. Change within the church, or any large organization for that matter, is slow and tedious with its own litany of hits, runs and errors. It has been both a painful and an enlightening experience, as many of my previous postings can clearly show. Writing this, remembering the events of the past half decade, I feel battle-scarred and tired. I am an artist, a seeker and a visionary. Moving forward within the church structure is a slow and burdensome process. I do not naturally travel slowly. Sometimes I wonder why I am still here…in church…any church at all for that matter? Good question.

Yesterday was another Sunday survived. Today is Monday, the day of healing—the day I get to dance in a spaciously beautiful room—with beautiful Jane, who is my teacher and friend. We come together in this place, with its strips of colored sunlight streaking across the old wood floor,  and a ceiling that dwarfs us by its height. We come with our body spirits as is—a come as you are party of two. Through the various InterPlay forms, and her years of expertise and training, we shake it out, sing it out, shout it out and dance it out. We dance for ourselves, for each other, and with each other in familiar forms. We even create new ones. We are clay on the potter’s wheel, laundry on the line, birds unfolding, flags unfurling. We are movement in time and place—each of us doing our best, reaching for our personal sense of wholeness within and without. And when we achieve it…when it happens…we are altogether amazed and elated. We are uplifted—a Lazarus moment in time that requires a bit of exclamation and a roll or two on the floor!

And that is why I find myself so looking forward to Mondays with Jane, when my body-spirit regains its equilibrium and I am One with all of Creation.

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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19
Feb
10

long ago and yesterday

Today is Friday and I am waiting for the hospice nurse to come visit AD. I look forward to her visits because they are informative and stabilizing for me as a (novice) care-giver. While I wait I think about my friend, adopted daughter, cancer buddy and teammate. This latter description is one we came to recently as we realized the synchronicity of the dance we are doing together. I am learning so much from standing back and standing by, trusting my intuition while ready to give it up when I am off course. This is a truly sacred space we are occupying together. I don’t think about the end, although I know it is not terribly far off and I am somewhat familiar with what it looks like. I think about now and sometimes I think about a few of the yesterdays, but if I do too much of the latter I get weepy and that is not helpful except when I am alone and private.

AD was diagnosed with ovarian cancer two months after my own diagnosis of non-Hodgkin lymphoma. A month prior to my diagnosis I had fallen down the basement stairs and fractured my right foot. By September, just after my first chemo session, and before her diagnosis, she took me in a wheel chair to buy a few items of clothing that I needed. I was very weak and still short of breath. It was tiring and we weren’t out very long, but the memory comes to me now that the roles are reversing. I want to share photographs with you that in my heart, speak of the relationship we have together. These are from October,  2006, after her surgery and first chemo session.

So long ago and just yesterday…..

24
Dec
09

christmas eve

It is late afternoon on Christmas Eve and all through the house not a person is stirring, not even a cat. The laundry is done and folded with care in hopes that my loved ones will have something to wear.

Ah, the memories of childhood…that advent of wonder. The sacred world begins to turn a new page on the first Sunday of Advent each year. As a child, I didn’t know that  Christmas was more than Santa, presents, family and fun.  I love Advent from start to finish. It’s just Christmas Eve and Christmas Day that bring a lump to my throat. Family, you know.

Yesterday I marked the first year anniversary of my oldest sister’s death from lymphoma. She was a mother/sister and a cancer buddy to me. A week ago, I learned that my adopted daughter’s cancer has returned. She and I are also cancer buddies—she having been diagnosed two months after me in 2006. She’s has three recurrences in three years, while I spent the past three years recovering and achieving remission. The past week has been full of challenges, both painfully sad and amazingly joyous. I am thankful for God’s grace and the love of friends. This small, chosen family of ours is standing in the wind…holding on tight, even as we let go, as we must…as we all eventually must.

I will write more about this as we go. Right now, it’s time make merry. It’s Christmas! And at midnight, even the animals speak!

09
Dec
09

finishing free

This was the day of all days…the big one…the last Rituxan maintenance treatment and I had been alternately looking forward to it and dreading it. Generally speaking, by nightfall, the prior day of these treatments, I turn on auto pilot and sleep-walk to the clinic. Last night was no different except that wintry weather was on its way and could easily cause delay to our 7:00  a.m. appointment in the city. My partner, Big Dawg was raised on a farm and respects weather…I mean respects! So we rose at 4:30 and left the house at 5:20.

The weather hadn’t actually arrived yet, so we were a miserable half hour early, i.e., 6:30 a.m.  The hospital never sleeps, so we could spend the 30 minutes in one of the less than delicious cafes, eating less than delicious morsels of flour, sugar and….and… Must have been something else in those buns, but can’t think what. By 7:00 we were checking in, sitting attentively for our pager to start squawking—the signal that my time had come to enter the portal gates and receive first my blood draw, and then my life-assuring Rituxan. We waited. No squawk was heard. Finally, after about 20 minutes, a technician came out and invited all those souls who would be receiving port-a-cath blood draws to follow her. I have a port-a-cath and I happily followed, thinking that the procedure would be expedited by reason of pager system failure.

No such expedition occurred—at least not for me. The device was clogged and could neither give blood nor receive Rituxan. The draw was done the old-fashioned way and I was sent to the chairs to wait…for what, I wondered? I waited and waited. Finally the technician came out again and beckoned me back to try another approach to unclogging the device. Not working; she asks who is my nurse? Can’t remember her name, so I give her the doctor’s assistant’s name, Ms. SM, and she is paged. Now the real waiting begins. A total of two hours, during which time I begin to slink into cognizance of low-lying fear—apprehensions common to cancer patients, but generally kept under wraps. It’s a bit like unlocking Pandora’s box. Other patients come and go and I am waiting with my uncooperative port, a constant reminder of my dilemma and discomfort. Finally the feeling of not being cared for takes over and I begin to tear up. A flood of cellular memory…times of childhood and beyond when I truly wasn’t cared for. This prompts BD to start the squeaky wheel apparatus. She makes calls to pagers and even speaks to some administration person. I am revived by this, but still the waiting continues.

Finally, the technician comes out and tells us that Ms. SM has been contacted and will page us out in the main waiting room. We trudge off for this area, which by now is overflowing with persons in varying stages of illness. This is discomfiting to me. We wait some more. Then a nurse appears (apparently the pager is not the signifier of choice for me) and asks us to go through the red door. We do and she is no where to be seen. Once again, long story short: we are ushered into a room to wait for Ms. SM. When she arrives, there is no apology or explanation. (This should not be a surprise to anyone reading about my medical experiences.) However, she is all smiles and warmly explains that although a final treatment had been scheduled for today, it isn’t really necessary since I have already had a little more than the two years of protocol treatment. Since Rituxan results are still being gathered world-wide, and since each person responds differently to it as well as to their cancer, I can choose to quit or stay and receive the stuff through a dorsal vein. After verifying with her that she thinks it is six of one half a dozen of the other, learning that my CT scans showed no problem, and my blood work was good, I heartily opted for NO MORE TREATMENT. Yowie, kazowie! I’m through! This means that I won’t have to endure another five or six weeks of recovery—that I can attend holiday parties and  go about my usual business with all my faculties about me.  What joy! I am officially in remission!

I will continue on with quarterly blood work, doctor exams, and periodic (hated) scans, but these will gradually lessen as long as my remission continues. I have follicular, B-cell, non-Hodgkin lymphoma that transformed in 2006 to diffuse, large, B-Cell lymphoma. The latter was wiped out with R-CHOP, the standard of care. I am left with the (indolent)  follicular lymphoma that may very likely cause a ruckus in the future, but I am told that it will not again transform as it did in 2006. Ms. SM outlined the possibilities for the treatment of recurrence. It would not be the R-CHOP and for that I am grateful. (Details of my experience—Dying to Live—can be seen as on my website.) On the other hand, it may never raise it’s disturbing head again…or it may be many years from now when I am older than the old I am now. No one knows what, how or why cancer occurs; how, when or why it recurs. No two persons respond to even the same diagnosis in the same way. Could be called a crap-shoot, I guess. Or is it a weather bell for the new individualized therapies now in the line?

Dr. G popped in to congratulate. He is really a mensch. Never mind the handshake, I had to give him an old fashioned hug.

Epilogue

Last night I asked God to help me be a conduit for my own healing and for BD to be that for me as well. I also asked to BE HEALED and to walk in faith for the healing God has already given and will surely continue to give. I asked this knowing that healing exists on many levels, not just the physical…knowing that healing is a very deep and wondrous thing. Today, I feel I’ve received a gift and a diploma. I am none the worse for wear, and clearly better for the wear. I am thankful and so ready to leave cancer behind. Tomorrow I will make an appointment with the surgeon for the removal of the dysfunctional port-a-cath. Then I will get rid of all the clothes I’ve kept just for port-a-cath infusions. Tonight I will put clean sheets on my bed and spread out my winter weight comforter. I am feeling loved by the Creator and so grateful for his/her Grace.

Grace




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