Posts Tagged ‘Cancer



04
Nov
10

update and post script

My posts have been few and far between for a while now. I have been on a journey and not through yet, but thought I’d just try to bring this blog somewhat up to date before doing so becomes a gigantic, uphill climb with a backpack too full of stuff to sort out, let alone write down for public consumption.

This year’s summer was a hard trek, but in a different way than last year’s summer when I was torn into pieces by the church we were invited—then uninvited—to join. Last summer the pangs of betrayal I experienced were felt in the warmth of my family—Big Dawg, Adopted Daughter Bettina and I. We set about fitting into the little church that welcomed us in on the rebound. We were beginning to breathe, but by September Bettina’s cancer returned for a fourth and final time. She died just ten weeks into the new year.

I was completely absorbed in caring for Bettina, and completely involved in helping her to die well. For a long time afterward I was equally absorbed in the loss of her and of our family of three. There were many losses since my cancer diagnosis in 2006 and they came swarming together in a great anguished whoosh. The repercussions were enormous. By spring, I no longer knew where I belonged or why. I was a traveler on the grief road without a sense of direction…just drifting in deep pools of sadness and disconnection. Toward the end of spring and the beginning of summer, quite unexpectedly as if by magic, I became a mother-in-law and a grandmother. There was no time to practice. The summer wore on and still the quiet, disconnected sadness. I yearned for spiritual connection and began attending Catholic Mass, while at the same time continuing in my position as visual art maven at the little quirky church on the edge of the city. The grandchildren were pinpoints of joy—lone stars in a dark sky. I became a woman with many faces, but no mirror in which to see them.

August was a particularly desperate time and called for desperate measures. I could not relate to the little church and could not keep from receiving the sadness bubbling up within. It was a time of affirming forgiveness, 70 x 7 and then some. My path became stony and disorienting. In response, the little church said don’t leave…let’s talk, and formed a small listening group around BD and me. Many things happened in rapid succession, both inside and outside the group. Issues fell into place as we became aware that four years of losses with little time between amounts to post traumatic stress. I don’t normally cotton with these labels, but this time it is fitting, and we are glad to have this understanding as a way to make sense of our wobbly-top selves. I am grateful to the several persons who were angels unaware in this drama, for I was not always so lovable. These people were willing spiritual conduits, each with a different message, each with a different angel’s feather touch. Each bearing God’s love and grace.

In the end, an aha moment was this:  understanding that in the loose, laid-back character of this quirky little church, lay freedom and trust and possibilities, and in return, I must give it all I’ve got. I’ve been busy ever since, not with more than you younger readers are prone to taking on, but with more than I am accustomed to taking on in quite this faith centered way. There are not enough days or hours in the days, and certainly not enough weeks in the month for me. I am swimming in a rushing river to some where that I know not…every now and then caught by an eddy of old thoughts and memories that must be untangled and set out to dry. In a couple of weeks I will turn a ripe 72… Despite my good health report, I am very aware of the time I have left—sensitized to it. Insomnia plagues me lately. It’s not a workaholic compulsion that is the culprit, it is this sense that I am in transition—in training if you will—for the last chapter of my life as a doer/giver. I am such a late bloomer…I want 20 years doing and giving in the space of 10! Sometimes I feel like a child who cannot wait for Christmas morning. Other times I feel like skipping Christmas morning entirely, for surely a gift with my name on it will be much too heavy for me to manage.

Called by name…that is the word I received many times in the dark chemotherapy nights.

Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame  shall not consume you. Isaiah 43

So when I am not wobbling over with extremes of joy and anxiety, I generally say, Here am I. Send me!”

Then I heard the voice of the Lord saying, Whom shall I send? And who will go for us? And I said, Here am I. Send me! Isaiah 6:8

06
Oct
10

after accounting for the selves

My late-life crisis is nuancing into the light of day. I am relieved. Having stepped outside myself to see my many selves and all those lives they’ve lived, I see progress and that is reconciling. The windy corner is calming and I see the rainbow…most of the time.

A voice speaks to me:

Your days will be an autumn harvest way before winter sets in.

A place at the table is waiting for you.

Follow the raven. He knows the way.

And in so doing, many blessings came my way this past weekend. On Sunday my oldest granddaughter, Miss Green and I spent a lovely afternoon, doing and being. What a lovely bit of gentle light children can be. I can hardly believe I am saying this. How did I get to be old enough to talk this way? That in itself is a mystery. Apparently an additional self has been added to the collection. I shall have to get used to her so I don’t think I am channeling my mother!

Both of my granddaughters attend a bi-lingual school…not Spanish/English…Japanese/English! How extraordinary! Nothing like this would have been in existence way, way, back when I was a child. I am amazed. They are both half Korean, which is really not a whole lot like Japanese except for being Asian. At any rate, they are learning Japanese and bringing home interesting little examples of their lessons with writing I can only look at and admire. Very pretty.

This is my name is Japanese written by youngest granddaughter, Miss Pink (5-1/2).

And this is BD’s name written by oldest granddaughter, Miss Green (8-1/2).

And this is BD’s characterture of them.

And as for me and oncology…I am still in complete remission and might not need another CT/PET scan until January or even March. What luck! Surely, the hairs of my head are truly counted, even the ones that fall to the sink as I comb through in the morning 🙂

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.

07
May
10

what could have been

I’ve been reading a new book by Kathleen Norris called, Acedia & Me: A Marriage, Monks, and a Writer’s Life. Ms. Norris is a highly acclaimed poet, and author. All of the words in the title of this book are appealing to me, even the word acedia, and that is because I had no idea what it meant. Acedia, I am told, is a state of spiritual listlessness, sadness, melancholy, apathy, carelessness, and lethargy—a pathway to sloth. Originally an affliction among the monastics and religious, it was considered to have the potential of undermining faith and sensibility. It differs from clinical depression in its spiritual orientation, but can be the precursor of depression.

After the first several chapters I came to see the funk I’ve been in much of the time since adopted daughter’s death, as acedia in varying degrees. This definition stops my free-fall state with a safety net of insight. Like a person ill for years and finally getting a diagnosis that it is not “all in the head”, I feel relief. The book is dense with messages for me on all levels of my life—from aspects of faith life, to matters of creative work, marriage, illness and death, I am infused with new insights to my own shadow side.

In the last few chapters of the book, Ms Norris shares the story of her husband’s illness and death from cancer, and her experience as sole caregiver, that got my heartfelt attention. I identify. That’s me in both places: cancer patient and caregiver. Her account of care giving, both during her husband’s illness and after his death speak loudly to me. I’ve been there. I know. I’m still there.

It has been 9 weeks since adopted daughter died. Not really that long in grieving terms, but my grief has a twist to it. As executors of the estate and caretakers of all things left behind, we have been stunned to find shelves and shelves of her life that she did not share with us—did not share with anyone. In fact, we see that she lived her life in serial compartments, like an old-fashioned rolltop desk. There is a quotation my mother would offer about not letting your right hand know what your left hand is doing. This could be applied. The problem is that the original comes from the Sermon on the Mount (Matthew 6:3) and is a moral directive to giving, not hiding.

What I have seen is a person I loved dearly enough to call daughter, who didn’t trust me, or anyone else enough to confide the many truths of her life that would have made the executing of her estate a far less messy and painful affair. But more than this consideration is that the love and trust she did give me was the best she could do. That says volumes. Hidden until the end. Every time she called me mamacita, she did so with the half she felt would not be rejected. “I would have loved you anyway’, I say to her memory. ‘I would have loved you and helped you make the crooked as straight as possible in the few days and weeks that were left”. If she were anyone else, I would be speaking philosophically and with a bit of distance, but because I took her as a daughter, I speak with the pain of not having been able to do all I know I could have done for her. This is a tragedy to me. Although I witnessed God’s redeeming forgiveness to her in those last few days, and know Grace was given completely, I feel a mourning for what was left out between us. I would have liked to give her the human forgiveness she was sure she didn’t deserve. But maybe in her morphine altered days, she knew it was there, and maybe she made that transaction in the shadows of her heart and soul…maybe that’s what I saw in her face as I administered the meds hour after hour with more tender love than I thought I had in me to give.

So what is the problem? Why does acedia haunt me like a child playing hide and seek in dress-up clothes? I don’t know. I am beginning to think that acceptance, letting go, and letting be is my spiritual discipline forevermore.

I hoped that by the time I finished writing this post I would have pushed through acedia, at least for a time. The estate is not yet settled and my personal sense of mourning for what could have been is not over. I do not have the sense of adopted daughter’s presence as I did with my sister after she died. I cannot explain this except to say that she never allowed herself to belong to anyone. Despite her promise to learn to hover in our lives, she does not. Perhaps there is a learning curve in the afterlife. Perhaps we are connected by this curve…she over there and me over here. Perhaps there will be a happy ending when my soul finally floats free.

Postscript: The deceptions we keep in our lifetimes may very well come to light after the funeral when there is little that can be done to alter them in any way.

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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