Archive for the 'Healthcare System' Category

24
Sep
13

Dancer Down: an unexpected seclusion

The morning of August 7 was unusually bright and sunny. A series of personally difficult life challenges had come to resolution and I was filled with immeasurable joy. Driving to my dance session that morning, I felt glad to be alive. Normally an experience like this would have made me eager to dance, but I had a vacation coming up in two days and things to do in preparation. I didn’t really want to go, but the body can get rather lazy. Like the tin man in the Wizard of Oz, it can come to a rusty impasse. I didn’t want that, so I drove on and arrived—all smiles—without a hint of the disinclination I really felt.

Jane, my teacher/partner, was not her customary, cheerful, and optimistic self. Something was off. Normally we will match each other in body-spirit whether we start out that way or not, so I didn’t think to question, nor did I state the truth of my disinclination. Undaunted by the disparity, I was confident we would find each other eventually, and so we began as we often do, moving in our separate spheres, performing for each other. Midway through the hour Jane put on the album I’d brought with me: Picture, by Night Ark (a quartet of musicians known for their fusion of instrumental jazz with tradition Armenian tonalities). Little did I know: I was about to meet my Waterloo.

I felt this hypnotic, seductive rhythm as a call of connection to the culture of my ancestors, hidden deep within my DNA, and my joy quickly increased to excitement. Although far beyond my improvisational abilities, I threw myself into moving interpretively to this hauntingly beautiful music, without the willing consent of my aging hips, and in a manner I think may have looked something like my little diagram drawing.

Within minutes, there was an audible a POP sound, followed by white-hot, searing pain! I knew something had torn inside. Groaning, IThe fatal twist 2 crumpled to the floor, where I stayed motionless and incoherent for several minutes, as the shock of the experience overtook reason. Time lost dimension and I was swimming in painful slow motion—a curious 4th dimension of my customary reality.

Having spent much of her life as a professional dancer with a collection of her own dancer’s injuries, Jane sprang into action, as I laid there in stunned disbelief. Prone to responsible problem solving and somewhat stunned herself, she tried her hardest to get me to consent to an ambulance ride to the nearest hospital emergency room. There was no way I was going to see the inside of one of those buses, before my time was up! Absolutely not! I took ibuprofen and arnica and continued to try… unsuccessfully… to reach my partner, Judy, by phone as well as text message.

As an InterPlay leader of 20+ years, with a talent for cleverly overcoming roadblocks, she reassessed the situation and applied InterPlay’s signature principal of incrementality to moving things along. She would suggest a move and I would try it. Little by little, I was miraculously on my side, then sitting up, then standing on one leg, and then leaning on the back of a chair. Using the chair as a walker, with Jane cheerleading, I hobbled to the elevator, out the door and into the car. Within 10 minutes, Judy arrived on the scene and drove me to an immediate care facility, where we learned that no bones had broken, but the pop had indeed been a tear, requiring weeks of rest, ice, pain medication, and a walker, along with patient acceptance of the situation (a challenge for me).

A stunned state of shock persisted for the first week, deepening as Judy and I felt our way around and through the daily realities of a crippling injury—a disability of unknown durWalker after immediate careation—to a person of a certain age. This was something I couldn’t accommodate without anticipating a measure of public chastisement. Had I been a bit too pleased with myself for having a fairly agile, old body? Perhaps I’d pushed it beyond reason…colored too far outside the box? Won’t people think I fell and broke my hip, like many older persons before me? But I knew I hadn’t crash-fallen; Jane taught me a dancer’s fall and that’s the way I went down.  Still, the idea haunted me and I didn’t want the humiliation of being thought of as a silly old lady playing at dance in her old age. The truth is: if I could have been anything in my life beside a visual artist, it would have been a dancer. To dance now, even past reasonable age, has been life affirming. All things considered I was even pretty good at it…for an old lady. 🙂

It wasn’t until a follow-up orthopedic appointment 10 days later that I learned my pop had been an avulsion, i.e., a tearing of the Sartorius tendon where it attaches to the iliac spine area of the pelvis. (The Sartorius is the longest muscle in the body, resolving in a tendon attaching to the pelvis.) This accounted for both the bone and tendon pain I was experiencing. No bone chips, no fractures—just a painful separation between the tendon and its point of insertion. I was assured that it was a common athletic injury—particularly in football—one that occurs when the muscle is stretched beyond its capacity. Well, I clearly did that, without doubt…but football? That was worthy of a laugh out loud!

Laughing or crying, in 3 weeks I would begin a course of physical therapy that would help me regain 95% of my former function. My inquiring and restless mind finally had an understanding of what had happened and a course of action. Between the relief I felt with the diagnosis and prognosis—along with the homeopathic care I knew would hasten healing—I returned home ready to welcome this secluded time out as an unexpected gift.

The story continues…

14
Mar
11

not a piece of cake-part 2

Update:

Last week I went in for my three-week follow-up visit with the cataract doctor. I’d been having a fair bit of eye strain whenever working on the computer (which is a lot of the time), and eager to get corrective lenses for the new frames I’d ordered a week earlier. I had all of this organized and coordinated to occur as swiftly as possible. (Frames are now referred to as chassis, same as autos—I think lenses are still called lenses. That’s a comfort.)

When I heard the ophthalmologist express concern for my visual welfare because I was now near-sighted in the right eye and far-sighted in the left eye, I began to replay the scenario I’d heard at my first visit. Did I hear this lovely man tell me that the cataract in the left eye was not severe enough to be covered by Medicare…and that was why he was just going to do the right eye? I think I did, but he doesn’t remember saying that. Okay, I can’t push the point because the memory can be faulty in medical situations. He suggested that possibly one of the technicians said it. Knowing how important it is to keep the docs liking me, I assented to this having been the case. Just between you and me…it was not the case. The doc said it and I took it at face value, thinking one eye would be easier than two.

As it turns out, doing both at the same time would have been easier for me in the long run. From surgery to new glasses takes about five to six weeks. Being a forward minded person, I’d set aside this time thinking that the left eye was in pretty good shape and might never need correcting. Maybe it won’t, but there is definitely a difference between the two eyes in terms of color and light…and of course now, in equilibrium as well. The good doctor says he would like to see me in six months to consider bringing the left eye up to speed. I will have to go through this whole monkey-business all over again. This means planning my projects and life so that I have nothing visually urgent during this time and nowhere to go, since weekly check-ups and an eye drop regimen are part of the program.

So this is where I am now: I will pay $700+ for the new glasses and hope my brain will compensate mightily for the split vision. If and when I can figure out when to have the other eye done, I’ll have to get another new pair of glasses. Ca-ching, ca-ching. It’s only money.

24
Feb
11

not a piece of cake

A week ago I had cataract surgery on my right eye. The left eye has not deteriorated enough to qualify for Medicare coverage so just the one eye had its fuzzy lens replaced with a manufactured model (an intraocular lens). I was nervous and apprehensive with memory recall of past medical encounters and uncertainty about the visual future. Despite all of this, and because I had covered all my bases of obligation, I displayed very good vital signs. That was a welcome surprise to me. No one panicking over heart rate and blood pressure. No need for IVs and consultations. The power of prayer and supplication!

While waiting for my 5mg of Valium I had a strong sense of the presence of both my deceased, adopted daughter, Bettina and my sister Florence, there in the cubicle with me. It was a thin place experience. At first their presence was comforting, but after a few minutes I had to ask them to leave and they did. Shortly afterward the nurse popped in with the Valium and there was no turning back. Within a few minutes of swallowing the tablet, I experienced a strange two tiered effect: mellow on the top with an underside of lingering apprehension. Took a while for these two to merge into one, but once they had, I was a lovely patient—agreeable, humorous and trusting.* Even the shower cap was an occasion for joviality. (Those who know me well will know this is not my most common persona.)

*Tip from experience: you get better treatment in the medical system if your doctor/nurse likes you. But if you don’t like them, get the heck out of there.

The doctor poked his head in, greeted me and made some notes. He asked if I was ready and I countered by asking him if he had said his prayers that morning. He replied he had, and since I had as well, we were ready to roll. I believe he said something like rock and roll? To which I most likely replied in the affirmative. (You gotta love that Valium.)

Being wheeled down the corridor to the operating room is a trip in itself, but I was lively and witty and amusing. (I should have been paid minimum wage for this performance.) Once in the OR, lying there like a cadaver waiting to be explored, my apprehension returned. Within moments I felt my sister at my side saying she would stay with me and hold my hand.  Scoff if you must, but this is exactly what I experienced and it was comforting. Do I believe it actually happened? Yes. I believe it truly happened just as the disciples believed they saw Jesus on the Emmaus Road. It may or may not have been factual, but I believe it was true.

The doctor sealed something large and roundish over my right eye and draped the left. I found the whole procedure to be a very strange experience of color, light and sound. Once finished, sight is immediate, but uncomfortable because the dilated pupil lets the light flood in as it hadn’t for several years. I returned home with dark glasses, a Valium hangover, and a number of medications to be dropped into the eye every two hours.

As the Valium worked its way through my system, I felt a bit lost between the thin place experiences and the real world. I lay in an abyss of suspended awareness…neither here nor there…until evening when a good friend came by to take over the eye drop regimen for a few hours. As I talked with him, an avowed, left-brain, linear thinker, I came across to reality-land as though stepping off a boat and onto the dry land we call reality.

The next few days were devoted to recovery and rest. The procedure is essentially painless, straightforward and without serious risks—a piece of cake, people say. The same people do not mention the follow-up weeks, which if cake, definitely are without frosting. Today, 8 days past the procedure, I am counting the remaining several weeks until new glasses sit on the bridge of my aging nose, hopefully loving their new home like crazy and relieving my eyestrain.

In my freezer is some left-over chocolate, chocolate cake with raspberries, walnuts and frosting. This is what cake looks like folks. I think I’ll have a small piece right now.

15
Feb
11

a note on another note:

Before my valentine salutation yesterday, I wrote about my search for an visual enhancement for our church lectern, appropriate to our Lenten theme. (See posting, on another note for February 10th) For those who wonder how it all worked out, I can happily say that, 1) I have relearned my laundry lesson and 2) my intuition about the burlap being appropriate did turn out to bear fruit.

After cleaning up all the mess in the dryer, I spread the burlap out on the ironing board and pressed it as flat as I could, then hung it up to dry overnight. The next day I looked in on the piece, which had acquired approximately 1 to 1-1/2 inches of fringe on both sides of its 48 inch length.  It hung there in its ugliness for most of the day while I set about searching in fabric stores for a piece of cloth that would speak of homespun, and be a naturally neutral color. After hunting high and low, I came home with 1-1/2 yards of unassuming linen, but no sparks had flown from this selection. I left it alone on the table and read another chapter of Taylor’s previous book, Leaving Church.

I could not get the burlap out of my mind, despite its menacingly ugly color and stains. By evening I wove a plan to color it with fabric spray, and began rolling through a number of color choices, settling on a variety of interlaced of tones. It is winter here and there is a ton of snow outside where I would have to do the spraying, so I went to bed with a plan to start the next day.

The next day was Saturday. Although the sun was out and the air beginning to warm up, I still couldn’t open the back door. Resourcefully, I devised a plan that would allow me to suspend the 48 inches of ugly burlap outside in front of the garage door. It took only a second to realize that my plan for multi-coloring was off the mark, so I just started spraying with ivory, then quickly switched to flat white. Each swish of white spray brought me joy. I knew this was the way to go. It took a heap of spraying to bring this remnant to a visual semblance of human/humble. While it was drying I flew back to the fabric store for the piece of purple I saw in my mind, draping along the left side of the human, humble, now whitened, burlap. I flew back twice. The first time I chose two beautiful fabrics based on color and texture that turned out not to fit the bill at all. On my second tour I found a dark purple, plain-knit jersey that spoke to me: Take me home, I’m the one! I was skeptical and concerned about all the money I’d already spent, but determined to listen to the intuitive voice over the, let’s just get it done, voice.

So I brought it home, set up the whole thing and there it was, like magic: the human/divine connection creating yet another altar in the world. I am pleased and relieved this is done. I am ready for my cataract surgery tomorrow. They say I will see instantly, but the following several weeks could be a bit of a trial. If I’m lucky and receive perfect vision, I won’t need glasses anymore. If I am not, I will have to hobble along for the 3 weeks it takes before receiving a new prescription and the additional week or two before new glasses are sitting on the bridge of my nose.

******

The surgical center just called. My appointment time is 7:45 am. By 9:00 the doctor will be making a small incision in my right eye, removing the failing lens and slipping in a new model straight off the assembly line. I don’t like to think about that. I prefer to think about the 5 mg of Valium I will get before, and the lovely nap I will have all afternoon long. After that…I throw myself on the mercy of all that’s good and holy.

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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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

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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