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.

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 21^st 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!)

Note: Please consider subscribing to this blog so that you will know by email when a posting has been made. You will find this on the right column under Websites of Interest. Click on Sign me up!

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…..

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!

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

plowing through obstacle paths

Today, I am blown about like a dry leaf by the hospital system that hosts the cancer clinic where I am a patient. I like my oncologist, Dr. G very much. He is kind and compassionate, and a specialist in the varieties of lymphoma, a blood cancer with some 30+ varieties. I like his immediate staff. But there is one person, Ms. X, who does not like me and she has today caused a confusion that has my household, Dr. G’s staff and the Nuclear Medicine department in an unnecessary flurry of activity to straighten things out. I don’t know why this person takes a dislike to me, but I am told I am not the only patient on her dis-list. Disconcerting…even more so if I were really sick now, as I was 3 years ago, when everyone’s compassion was a cup of cool water for me.

Why Ms. X continues to hold her job is a mystery to me, but Ms. L from Nuclear Medicine has taken on the case and saved the day. Yeah for the stalwart ones! Thank you Ms. L. I didn’t want to have to postpone this scan and go through the anticipation all over again. Blessings on your day Ms. L.

This brings me to considerations of Kingdom vs. kingdoms. Nothing like this would happen if egos didn’t run the world…yes, even in the church!  So I’ll share with you my Advent reading this morning. It comes from a little book by Richard Rohr called, Preparing for Christmas—Daily meditation for Advent. Today’s reading is based on  Isaiah 29:17-24; Matthew 9:27-31

And those who err in spirit will come to understanding, and those who grumble will accept instruction. Isa.29:24

Easy to see where my alliance for proper health care in this country lies: let’s put the CARE back in Health care! Some younger folk might be surprised to know that there was a time when hospitals were not completely bottom-line-profit oriented, when insurance and pharmaceutical companies were not bed-fellows, and when doctors actually came to a sick person’s home and got to know the family and the circumstances. Not every new thing that comes out of the can  is progress.

flying around corners

Since I last posted I have flown to many places in circular patterns as well as straight lines and U-curves. Last weekend I flew (actually) to New York for a meeting of the MennoNeighbors, a group of Mennonites currently putting our heads together to work toward securing the next step our denomination must take in social justice: inclusivity and the embrace of diversity. It was a fine weekend, met very interesting and wonderful people. Didn’t have time to see much of Manhattan, but we got a lot done (I think). Then flew home and attended a lovely party with new friends. Yesterday, I crashed under the weight of water logged wings.

Today I literally turn the corner on safety and turn 71. Those who are yet healthy and under the age of 60 may not understand what I am about to share concerning corner-turning, but hang in there with me and time-travel a bit.

My 70th birthday was bittersweet. We thought we were going to be received into membership at the church we were attending. It was to be a prodigal son  sort of thing. Dear old friends were invited to attend and were just waiting for the date to be declared. My  singer/songwriter  friend was going to play and sing for us. Significant persons in my encounter with faith were looking forward to being there with us. After 3 decades in the desert, this was an important event of covenant renewal for us. Of course, as we know, it never happened. Instead, we had some people come and celebrate my 70th birthday, including one dear old friend who flew in from Albuquerque. It was an amazing evening. On the other side of this movie screen, I was recovering from a Rituxan infusion  (lymphoma maintenance treatment), feeling ill and heart-broken. That was 70 for me…a little formidable but a cornerstone of age that I managed to slip through with more or less dignity.

This year, I turn the corner and face the east, the road to 80. There is no stopping it. The years go so quickly and cancer patients all know that time becomes a different entity in the remission stage(s). For me, it is not a loss of youth, it is an anxiety about time itself…time to do as much as I can to make a difference everywhere I go…to leave a legacy that is positive and helpful, especially to my daughter, partner and all those whom I have loved, love and maybe love me too. But even more than that—to leave the spot of the world that I stand in better off than when I arrived—better off because I chose to struggle toward wholeness without holding back. Sometimes that looked foolish to me as well as to others, but I never had a real choice. It wasn’t heroic. It was just an energy seemingly written into my DNA, completely outside voluntary action. Completely intuitive. I take no credit. It just was what it was. Chemotherapy changes DNA. Mine did in some respects, but not in this one. Praise God!

This is a sad time of year, and it is nearly Advent. I am mourning losses of my own and that of persons who have touched my life and now are gone. This includes all persons I’ve known who have died of terminal illness as well as those gone through an accident of timing. They all live in my heart. The first is my sister, who died last year of lymphoma at almost 81, 2 days before Christmas. She was like a mother to me. I talk to her often and think she is waiting for me somewhere in time and sacred space. This is a comforting thought. I am young and old at the same time because I got such a late start at 40. My young friends don’t understand my old heart and some of my old friends do not understand my young heart, but if I walk along with Jesus—the premier young/old, male/female one, I just feel like me and that is the best place to be…walking along the Sea of Galilee with all the others.

So I gather myself together, dry my wings off and prepare to circle the sky with wings of prayer. I am the Sacred Bird of the North, made in God’s image and preparing to join the great procession of Sacred Birds when called…but for now, I have so much more to do…so much more of Galilee to walk. May God grant me time enough to die with no regrets at all.

Praise God from whom all blessings flow….

I want to walk as a child of the light. I want to follow with Jesus…

48+ hours later

So much for the immune system replacing those damaged white blood cells quickly! In my case, improvement is slow and painstaking. What I didn’t say in yesterday’s post (what I did while lying down), is that while Rituxan (rituximab) is not a heavy duty (toxic) chemical, it is still a drug developed in a laboratory, and not a natural substance. It has side effects…not horrible like chemo, but not a walk in the park either. At least it isn’t for me.

At this time, there are 5 years data on Rituxan’s use. When I started on it in May of 2007, there were only 2 years data. I’m a bit of a guinea pig because this drug managed to get FDA approval under the Clinton administration without the usual 100 years (just kidding) of testing generally required in this country. That is not to say it had no testing, just that for some reason that I can’t remember, its successful use in Europe, along with some other loopholes in our system, brought approval more quickly. And because of this, many thousands of people have longer remissions and better chemo outcomes. So why am I complaining? I shouldn’t.

As I have gotten older I have become one of those persons who are said to have a delicate constitution. That was not always the case before the  great mid-life shift in age. Perhaps this shift to delicate is concurrent with having had the lymphoma in it’s indolent stage for a long time before it transformed into its large cell manifestation? I just know that somewhere around mid-life, everything started changing and I got delicate. So now, 48+ hours after the miracle drug dripped into my body, I can report that I no longer have bone and muscle pain, heartburn, abnormal bloat, brain fog, peripheral neuropathy, low body temperature, and emotional melt-down. No, I am improving. I am just extremely fatigued, plagued with digestive misfiring, night time neuropathy, chilliness and bad humor. I have put in a call to my trusty homeopathic physician who will help me with these side effects that I couldn’t possibly be having, since the drug is so well tolerated by the vast majority receiving it.

* * * * *

Just spoke with homeopathic doctor X  in the knick of time. I was about to spiral out into the stratosphere! I’m an emotional person. You probably already figured that out.  Back to being grateful for Rituxan

* * * * *

Homeopathic  Update: 2.5 hours after taking first dose of prescribed remedy, and I am feeling so much better that I’m wondering why I waited so long to call Dr. X. Hope it was stupidity and not pride…

what i did while lying down

Yesterday, I traveled to one of the big university cancer research clinics in my area and laid my body down to received a substance called *Rituxan (Rituximab). I do this every 12 weeks, rain or shine, hot or cold, happy or sad, sick or well. Rituxan has helped me to achieve 2.75 years of remission from non-Hodgkin, B-Cell, lymphoma. Unless the CT scans show otherwise, 12 weeks from yesterday will be my last treatment and I will be declared in full non-Hodgkin, B-Cell, lymphoma remission, otherwise known as a cancer survivor.

Cancer is now generally considered a treatable, chronic disease in the oncology world. Remissions, the state in which no detectable cancer is seen in the body, are key. Anything hiding or too microscopic gets a free ride unless, or until the whistle blows. So remission is bedrock for being a survivor. Yes, there are other characteristics, like ingredients in a pie, but this one is numero uno. After that can come any number of poetic attributes, but remission, preferably full remission, is #1. Thanks to the biotech pioneers, Ivor Royston and Howard Birndorf , (were they beamline scientists?) and the companies who market rituximab  under the trade names, Rituxan and MabThera, my last encounter with this product will be 12 weeks from yesterday. (Praise God!)

Rituxan infusions are not a horror story, as is most chemotherapy, but it has its own properties that vary from person to person. Simply stated, Rituxan is a monoclonal antibody that locks onto  the CD20 protein found on the surface of the B-cell lymphocytes. It is also present on the surface of most of the abnormal B-cell lymphocytes that occur in some types of non-Hodgkin lymphoma. Rituxan marks these cells to be attacked by the immune system; however,  both abnormal (malignant) AND normal (healthy) B-cell lymphocytes are marked.  The downside to this double deal is a lowered immune response to colds and such for as long as it takes for the  body to replace the normal white blood cells that are damaged. The literature says this happens quickly. My experience has not been quick. Today I am at 45% of my normal vitality, feeling tired, flu-ish, worn and a glass half empty. I have to be careful not to be around sick people. Last time, because I was already not well before getting the infusion, it took about 6 weeks to recover and I questioned the value of continuing on. Do I say anything to the docs? No, I do not because in their minds I’m better off compromised than dead!  Well, this time I didn’t have anything viral going on, so I should be better in a few days to a week (maybe 2 weeks.)

I sound ungrateful, I know. What I really am is worn out, like I nearly drowned swimming across a muddy river, and now glad to be resting, sopping wet, under the bridge, away from the elements. The heart wants to get on with things, but the brain is foggy and the body parts don’t seem to recognize each other. I’m a merrionette…a Pinocchio! This soap opera will pass and I am a lucky lass to have a great oncologist with a compassionate heart and a warm demeanor…lucky as well to have friends who care about me and pray for me.

I am also lucky to have gotten sick AFTER I’d already gotten into Medicare. Even with the insurance I had as a self-employed person, it would have been a financial wipe-out with who knows what ending. (One CT scan can be 6 or 7,000 dollars. PET scans even more. Rituxan infusions also thousands. Will somebody please wave a magic wand in Washington to get all those “servants” to see the light of day??? This rich country does not now rank very high among the health systems of the world. I personally mourn for an artist friend who died of lung cancer because he had no insurance! He was gifted, brilliant and sending money to his developmentally impaired daughter. I mourn for all those who, against their wishes, are inducted into the cancer club and especially for those who finally must leave their bodies behind to the thief that is cancer. And then there are the families, the friends and the loved ones… Come, Lord Jesus, the tables need overturning.

Hello blogoshpere

This is my first entry as a newbie blogger. I had so much fun leaving comments on my friend’s blog, that  having my own soapbox seemed the thing to do. So, with help from blog friend, ordinary (mostly), I am stumble-bumbling into blog-world from my comfortable computer studio where I more easily create digital montage images for whoever needs them. If curious, see my website,  www.inheritanceproject-2.com

I have lived a long time and done a lot of things, half of which are forgettable, the other half largely regrettable, but gathered together are plowed into a redemptive field of rolling hills and valleys called experience. This of course has been by Grace, not by might, will or cleverness.

Three years ago I was diagnosed with non-Hodgkin, transformed, B-Cell lymphoma. Since that time my life took a steep bank  toward the center and I have not been the same person since. I do not thank cancer, nor do I pat myself on the back for surviving that first onslaught. What I do is look deeper, see more, think a lot, hear a lot and by the Grace of God know that some things in life count more than others… friends, family, peace, justice, honesty, truthfulness, forgiveness, faith, and walking the Way.

This is what I took with me from my cancer experience, and what I live by each day as best I can:

Do not be afraid—I will save you.
I have called you by name—you are mine.
When you pass through deep waters,
I will be with you; your troubles will not overwhelm you.
Isaiah 43:1-2