Archive for the 'Cancer' Category



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

04
Mar
10

wondering

I wonder if losing a hand is anything like losing a daughter…even an adopted one? I wonder if losing a friend is like losing an adopted daughter? I wonder about a lot of things these days, like why I am called to lose this hand while having to hold on to its arm? I wonder why this is happening during Lent when my denomination’s theme is Holding On and Letting Go? I wonder how Mary Magdalene and the other Mary did this at Calvary? I don’t wonder how the disciples did it because I know they could not, at Calvary. It took Jesus meeting them on the road to help them get back on track. After that of course, they did quite well…except for one…

But I am not a traitor and am not falling asleep. I keep watch each hour and even when stumbling I am still putting one foot in front of the other…holding on and letting go. I have seen much radiant light in this watch with my adopted daughter, friend and teammate, but I have not yet received the knowing…that enlightenment that God always sends when I am ready and the time is right. So I wonder why this person dying too young from cancer…and so like a suffering child in some respects…has been chosen to leave before her time. Or is this her time and I am just too self-bound to see it?  Has God chosen her to be his paschal lamb this year of our Lord, 2010?

I wonder because I cannot yet grieve as deeply as I’d like. I am a care giver. That is my job right now: giving care—loving care. Wondering fills the void of  loss. I am wondering because I cannot rejoice. I am no saint. I am wondering like a soul wandering in its velvet deep chamber—discomfited and discontent. I did not choose this assignment. It chose me. Once again I am in God’s transformation class, hoping to graduate as soon as possible. Last year at Lent, it was a class in transformation through rejection. This year it is a class in transformation through loss and that’s my weakest subject! Never was good at loss. Don’t expect to ever excel at it. Just hope to make it through without losing at loss. I am speaking in riddles. My heart is a labyrinth of wonderment.

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…..

16
Feb
10

home again

It has been nearly two weeks since I returned from the Mennonite Arts Weekend in Cincinnati (MAW). I wanted  to write about this  earlier,  but I couldn’t seem to find enough interior space to organize the experience into words and sentences. This was our last trip together, Big Dawg, Adopted Daughter and I. We would not get to retirement at 50. We would not head out together to roam the country, visiting churches in an RV with a big PEACE sign on its side. This trip to Cincinnati would be all of it and none of it. She wanted to come along. We rented a very big van with room for her to lay down all the way and still plenty of room for all the equipment and artwork I had to bring along. A dear old friend (DOF) flew in to go along with us. The trip was a sober reality, not the devil-may-care trip we’d dreamed about.

We arrived early, set up our hotel suite and headed into the weekend’s business on the following day.  AD slept all of that next day. The trip was more tiring for her than she’d expected. We three, BG, DOF and I went on to set up my installation and panel display in  the gallery and the projection equipment in the chapel for my presentation the next day. The hosts of the event were very gracious and helpful, but there were snafus and unexpected problems to be solved, so set-up took a very long time. Anxiety was not completely absent. I had spent two years thinking about my theme of suffering as Sacred Spaces/Common Ground, and six months in actual preparation. All the while working at liturgical installations at our church, keeping house, keeping the blog, maintaining activity in an online Mennonite listserve, mentoring a young woman friend, and then since January, taking on the responsibilities of primary care-giver for AD. I was exhausted and sad…running on empty. This was not what I had expected the MAW weekend to look like. It was to be a celebration, but I did not feel celebratory. Four friends and Darling Daughter came to support and celebrate with us. I could not manage a light heart.

At 9:00 on Saturday morning, I began my presentation:

I chose suffering as my contribution to our theme for this weekend—The Art of Place: Sacred Spaces and Common Ground. Before I plunge into my talk, I want to say that it is a great privilege to take part in this festival of the arts and to be here with you tonight, sharing some of the experiences that have transformed my life. I’d like to thank Hal Hess, Anne Hevener and the committee for inviting me to share my journey with you this weekend.

I concluded with a PowerPoint presentation of a cross-section of my work. It went very well despite the hang-over I felt from too much insomnia sedation  the night before. I see this as God’s grace and myself as messenger. During this past year I seem to have miraculously acquired a skill in reading a prepared text in an intimate, conversational fashion and I cannot account for this. I had hoped to make contacts for my liturgical art, but that didn’t happen. I had lots of positive feedback from lots of people, but it was all centered on my Dying to Live installation…my cancer story.

The rest of the day was a bit of a fog for me as I hadn’t had much sleep and was running on fumes. By afternoon I was a ghost and spent a couple of hours asleep on one of the back, padded pews of the church, while the assembled faithful blended their voices in Mennonite singing. If I haven’t ever mentioned Mennonite singing before, let me do so now: every Mennonite grows up singing and reading and/or playing music. Even the poorest congregation sings beautifully. They are not so up to speed in the liturgical art and dance as worship category, but music is exemplary, so I must have slept very well. I don’t remember ever waking up during those two hours, and when I did wake up, I wished I hadn’t had to do so.

My memory of the event is hazy. I know there were fun times with friends and wonderful events, but I can’t seem to recall them very well. It is as though a veil covers my memory. I felt relief once we arrived home on Monday. My buddy OM came to help us put the seats back in the van and stayed for dinner. Empress Bird joined us at table as well and that was good. Afterward, Ad rested while BD, OM, EB and DOF all played Scrabble. They had a hilarious time and it was good to feel joy and light around me.

The next day AD slept a lot and wasn’t feeling all that well. I found her mood and affect markedly different and didn’t know what to think. As novice care-giver I was concerned. The following day the new strange behavior continued. When the hospice nurse came, she took all the necessary readings and suggested it was time to start oxygen and increase the morphine. So, the oxygen machine arrived and the meds increased, and  AD began to feel better.

Before DOF, who is a former dancer and interplay leader,  left for the airport, she and AD did some hand-dancing together. It was lovely to see Ad’s face light up like a child seeing a robin’s nest of hatchlings for the first time. Small pleasures count big sometimes. After DOF left, we began slowing putting the pieces of our life back together…post Cincinnati… looking toward the next phase of living and loving together. The oxygen machine is a noisy presence, hissing and phewing its life-sustaining presence. We named it Darth Vader! It’s hard to ignore and hard to accept. Morphine is strangely helpful, both for the sufferer and the care-givers. I watch her take it and feel relief as though it were a healthful potion rather than the addictive opiate that it is.

I am waiting for the hospice nurse to arrive. I need to know that stats. My AD doesn’t say much about how she is feeling…doesn’t often know…I rely on the stats and the experienced nurse to tell me. When we’ve reached a new plateau in the dying process it is always a shock to my system, so this time I’m prepared. No more flying around in my head. I know there is a process underway here. The cancer will take over and the morphine will increase and eventually the two will shake hands and my dear friend, AD will go home.

But right now, we still have work to do and lives to live. We are busy…she with dying well and I with helping her to do that as best I can. It is not time for grieving yet. I am so busy keeping lots of balls in the air and picking them up when they bounce to the floor. Sometimes have to dust them off before tossing them back into my small universe. Dear God, don’t let go of us.

Our nearly twenty old cat, Frank had begun sleeping most of each day with AD. They were a great comfort to each other. This morning at 5:20 a.m. he  was in a lot of pain. We knew it was time and woke AD to say goodbye. We took him to the Emergency Vet Clinic straight-away. She says he will be waiting for her.

The nurse left. Oxygen has increased from 2 to 2.5; morphine increased by 2.5 ml. Ad is sleeping now and I have to get on with my list for today. I’m glad I had a chance to talk with you.

02
Feb
10

and then…

The day following our joyous membership ceremony, Adopted Daughter and I made a visit to the palliative care doctor her oncologist had recommended. Thinking we were going to get something better for pain along with good advice, we greeted the doctor warmly and answered all questions. Then came advice we were not prepared for: “Have you considered hospice?” the doctor asked, succinctly and sensitively. We listened, understood, and as if on cue, we both agreed that it was a good idea to get that service in place at the outset. We quickly understood that hospice was not just for those near death, but for those whose illness leaves them less than six months of life. While we knew the likely prognosis, neither of us were quite prepared for the realities this move would usher into our lives.

No sooner was the decision made than the wheels of hospice care turned quickly…all week long. Every day last week was filled with planning, preparations, announcements, discussions, hospice visitations and shock. By Thursday night shock morphed into full-real in a dance without rehearsal. What I had begun with practicality became mournfully tearful without warning. On Friday a visit by the pastor of our church, along with AD’s friend and pastoral mentor, wound it’s way into an amazingly comprehensive plan for counsel and support that we call the Care Team. This is now in place, complete with a special blog to provide updates, conversation and a visiting calendar for two congregations and AD’s many friends. I am exhausted. I am halfway through an unexpected course in caring (not curing), taught by the holy spirit of God.

In two day’s time, my partner (Big Dawg), AD and another dear friend will pack up a huge van, climb in and head to Cincinnati for the biennial Mennonite Arts Weekend, where I will be an artist-presenter. The theme of the festival is The Art of Place: Sacred Spaces and Common Ground. Long before any of the heartache of AD’s metastasis, or the trials that so painfully excluded BD and me from membership occurred, I had determined that suffering as sacred space and common ground would be my reference. Now, I find this quite stunning—a clear convergence of harmonic God-tones toward a thin place I am both prepared and unprepared to speak about.

“That’s fine,’ says God. ‘Now you can listen and speak the words I will give.”




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