Archive for December, 2009

31
Dec
09

dying and caring

Yesterday, Adopted Daughter talked about her illness, her thoughts about the immediate future and the way in which she wants to ease into her dying days. It was a sobering talk…not long and not short…just about right for managing to mostly stay in-the-now. We are walking together toward an end that will receive her breath, and for a time will encapsulate mine. I have just commemorated my sister’s passing. I am ready, but for the longing to say: “No…not now, not yet!” But we know it is coming…we cancer people know the signs before others do. We know and quickly learn to savor each day. I hope I am not making it sound easy, because it is not.

Last night I also learned how deeply my Darling Daughter suffers from wounds inflicted so early in her life that she doesn’t have recall. But I do…I was there and I have been waiting for decades for confession and forgiveness. Now that perhaps it may happen in the coming year, I am breathless with hope and fear—fear of overload. Although the river has risen high enough to enter my throat at times, I have not swallowed nor drowned.

Learning Trust: I am becoming a receptacle…a wine skin, if you will, and there’s a strange sense of peace in that. In my best moments, I am a receiver of the Spirit through Christ, and through many others who have gone before. Because of this, I can also be a channel for the Spirit: Legacy – Inheritance.

AD and I are reading Henri Nouwen’s, Our Greatest Gift, A Meditation on Dying and Caring for a class our church will host in a few weeks. She and I will go together and learn how best to walk this walk in the company of Sisters and Brothers. We are both student’s in God’s classroom. Nevertheless, I confess to feeling best when she is here in the house with me, whether sleeping, waking, working, reading—whatever. I have two daughters, one biological and one “adopted.”  One is slowly dying and the other slowly living. The wheel turns and we with it.

28
Dec
09

chain of events

I love the concept of a chain of events. According to Wikipedia, a chain of events is a number of actions and their effects that are contiguous and linked together. Then there is the fabric of events, i.e., an expansion of the chain of events, emphasizing that chains of events are intertwined with each other as a fabric. Whether chain or fabric, such experiences can give one pause to reflect and reflect I shall.

It was snowing Saturday morning as partner  Big Dawg and I packed up my 1999, All Wheel Drive, Outback with all the paraphernalia needed for updating the liturgical installation at our church from Advent to Christmas/Epiphany. I brought along everything I could think of that might be needed for this task, including an extra sweater and gloves without fingers, just in case the church was freezing cold inside…something I suspected could be the frugal case.

We arrived and were met at the door by the clean-up volunteers who generously donate their time in love. Being met at the door meant that we didn’t have to struggle with the stubborn locks that prefer to receive keys copied from the originals, lost long ago and now forgotten by everyone but the locks themselves. We hadn’t been there more than 10 minutes when I realized that I had left half the new material at home…the half I had to hang first! Although the church is only 20 minutes  from home by toll road, it was snowing and I didn’t want to disturb Adopted Daughter’s rest by asking her to bring the missing pieces to us, so of course faithful partner, BD went back for the goods.

While she was gone I was busy with all the peripheral tasks. Then after about 45 minutes my cell phone rang and then stopped. I thought BD was outside the church door waiting for me to let her in, but no…no one at the door…just snow and cold. I called her back expecting anything but her shaky voice on the other end of the line. She told me that she had gotten halfway back to the church with the pieces I’d left behind, when the hood of the car angrily flew up, crashing the windshield, breaking the rear-view mirror and leaving only a couple of inches of cracked windshield for her to see the road and steer the errant vehicle off to the side through ice and driving snow, while traffic whizzed by. While I was balancing on emergency mode with practicality and calm—a thing I do about an hour before I realize all the could have beens and go to pieces—she said she had already strapped the hood down, was looking through the sharded windshield and heading back home for another car. I had time to think about the could have beens and how it must have  felt to have been the driver: SCARY!

I was not feeling upset or disappointed or anything that I could locate, beside gratitude that no other cars were involved and no one died (especially BD). I think I was in some level of shock, not wishing to feel an additional layer of life challenges. AD’s illness required a live-in-the-now lifestyle and I was working hard at being good at it. BD was a good driver. I was grateful and not surprised that she managed so well.

When BD arrived, we got to work, finished the task and headed home in what had been the old faithful station wagon. We drove slowly, carefully and quietly so as not to disturb our querulous hearts. Once at home, we made the insurance call, took care of whatever business was in front of us and had lunch. It was later on, when I went out to the garage that I saw the car…really saw it! My heart began to sag as I took it in and realized what it must have felt like to have this big piece of metal suddenly fly up and toward, like a determined bird of prey. We talked about it then…the what ifs and the could have beens and the would have beens. BD had been cool and competent during the attack: emergency mode.

So if the latch was working on giving way, and would have eventually done so regardless of weather, what I ask, would I have done had it let loose while I was driving? I’m pretty sure I would not have been competent or cool. The possible scenarios are unnerving. I do not believe in pre-destination or anything that leaves the relevance of God out of the picture. So I take this experience to my heart and do not dissect or analyze it. God’s grace prevailed. I don’t need a reason. God has called me by name and has not let the river overcome me….once again.

Tonight we took the poor, dear car to the body shop. It has a date with the insurance claims adjuster. They will tell us and we will say yes. Weeks from now Dear Car will be ready to roll and so will we.  Grace again and again.

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!

15
Dec
09

children in time

I believe children are formed with a particle of God’s DNA embedded deep inside them. And when they are born they have more than physical reasons to cry out. I think it’s the experience of separation from the creator, mother/father God…the first of many separations to come. Happily, they are welcomed by loving persons (usually) who take up the slack and show the way.

Children are amazingly insightful. All we have to do is suspend our own educated understanding to see this. Their drawings, stories, prayers, dreams and hopeful trust in all that is unseen and untouchable, delight and inspire. They are the beginning and we are the end. Alpha and Omega. As a new member of the Omega club, I am blessed by this…blessed and renewed. Like glimmering candles in the dark, the prayers of children and their thoughts about God in particular, can be quite profound in terms of trust and unhindered belief in the mystery of the Divine—a quality I must work backward to achieve. These little prophets and oracles are God’s Grace.

This is what I hope will be the first of many postings in what I am calling children in time. If any of you have any bits of child wisdom and grace you’d like to share, please let me know. In the meantime, we’ll start with a poem written in 2007 by a little boy of  7 for his class assignment, using the acrostic format. His name is Liam Peachey,  now 9 years old, the son of a dear new friend of mine from my new church—the one that welcomes everyone…

Some children write to Santa at Christmas; some children write about Jesus for CHRISTmas.

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

08
Dec
09

round two

It was snowing this morning—first snowfall of the season. My appointment with the thyroid doctor wasn’t until 3:00 in the afternoon. Driving in falling, wet snow made me apprehensive. I didn’t need snow and I was beginning to feel low and moody. Tried to get my appointment moved up and couldn’t, so I went out, shoveled the entire driveway, and place my car in an easy to exit position in the garage. While shoveling I became lower yet and sadly, began to feel angry. What about? I didn’t know. Everything.

After shoveling, I hung my wet coat and hat to dry and proceeded to begin my day at the computer. Within minutes, the doctor’s office called to ask me if I could be there in half an hour. Absolutely. Thank you God. No fender-benders for me. I got myself together and set out. The snow stopped falling. The streets were navigable and I arrived 10 minutes early.

I received an ultrasound prior to the visit with the doctor. Back to the waiting room. In another 10 minutes, while I was in a little room waiting for the doctor, my cell phone rang. It was a member of my welcoming church asking about my well-being and telling me I was greatly cared about. I became teary and realized I had been fearful of this visit. I knew about the fear of the oncology visit looming ahead for tomorrow and  the CT scan aftermath still fresh in my mind, but I wasn’t aware of being concerned about the thyroid situation. Maybe it was all one big ball of wax, as they say.

Well, maybe there is something to this look on the bright side thing, or maybe it’s faith…my thyroid blood levels are now normal, the larger tumor is shrinking to an acceptable size, and the smaller one hasn’t grown. Yeah, for the home team! Relief and joy. So glad this doctor chose to treat pharmaceutically rather than surgically. I even got a free sample of my expensive osteoporosis drug! Do I feel sorry for the snit I was in earlier in the morning? Not really. I am so much just a human being. No spiritual giant, I. We do the best we can by the grace of God and s/he does the rest. Joy!

So tomorrow I go to the cancer clinic, learn the results of the CT scan and receive what is expected to be the last lymphoma maintenance treatment of Rituxan. I’m counting on the scan showing no recurrence and the Rituxan experience truly being the last of too many (in my opinion). But…let me not deceive you…regardless of what I say there is still the shadow within that fears and apprehends. Here is where my childhood training of holding the doctor in high regard comes up for air. Let me hear this man of dubious magic say: “You’re doing well, Ms. Called by Name. I see nothing to be concerned about. I’ll see you in 3 months. Have a nice holiday!” Sigh…. I’ll let you know.

06
Dec
09

squeaking through

I had my CT scan yesterday morning, thanks to Ms. L. We arrived early…6:30 AM. After waiting for 28 minutes for someone to appear at the reception desk, my partner was forced to knock rather loudly on the closed door to the nuclear medicine inner sanctum where I (thought) I would/should be entering for my 7:00 appointment. The voice behind the door was annoyed and told her to stop making that noise, whereupon she, BD blurted out with nearly equal impatience our plight. After twice this exchange of early morning annoyance, a sweet young woman emerged and told us that we needed to be in another building and floor for a CT scan as this was PET scan territory. Fine! Ms. L didn’t mention this to me and we had followed directions to the procedure scheduled in error, 3 months prior by Ms. X. Okay! Off we went…quickly.

The correct department for CT scan (computed tomography) was radiology and its like. We filled out forms, which you’d think the hospital would have already filed away for all its patients, but no! No such organization in a behemoth of a hospital. I filled out the form and waited for the buzzer I held in my lap to start quacking. Finally it did and in we went. The young woman escorted me/us inside and shortly the games began.

First off the dressing room. Since I knew the procedure and hadn’t worn anything with metal in it or on it, I was allowed to stay dressed. That was the first achievement of the day. Sitting around in a cotton gown is cold and demoralizing while drinking down 2 quarts of a barium mixture euphemistically called, a smoothie! It is very thick, something like drinkable school paste. It’s definitely not tasty and not worthy a smoothie classification as that is misleadingly one of the many types of fun foods. One is given an hour to drink this substance because it takes an hour to travel from hesitant mouth/throat to the end of the pelvic gut, necessary for a  pelvis/abdomen/chest scan. During this smoothie time an IV needle is inserted in the arm to receive the iodine that is given during the scan for what is term “contrast.”

That is an experience in itself, brothers and sisters! The iodine enters quickly, felt first in the head, very warm to hot, then traveling down the entire body. As it passes, a sense of urinary urgency occurs, but it passes and no accident occurs. It is a very strange sensation—hot like a sunburn, but from the inside.

Something strange happened this time as I lay in the “tunnel” waiting for the iodine infusion. I felt the oneness with God and it was another point of light, something to write home about…or keep to myself…

The scan itself takes only 5 or 6 minutes. The prep is the nasty and the afterward even nastier, as the barium must be evacuated. This process varies with the individual. For me at my age and with my sensitive digestive system, it was a nightmare with sleep a blessed relief afterward. I felt weak and sickly all day long and went to bed early. Am I sensitive because I am or because I’m old and the parts are wearing out? I don’t know, but I am glad to be feeling better this morning, and on my way to Advent 2 at my church…seeing all the people and praising God for today and the hope for tomorrow.

So that’s how it is. If the scan says AOK I won’t need another for a year…maybe more. I will rejoice. It’s never pleasant to relive the cancer journey, as I did yesterday. Today is Advent 2! The blessings of the day to you!




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