May 28, 07
I woke up in the middle of the night
with Gary Hartman on my mind.
Now sure why, other than I am calling
him in to be a Spirit Guide of mine now.
I am sure he hangs with me at times.
I just wanted to acknowledge this great friend
who was with me in the Hospital one night
during Getting Hip #2, or was it #1?
Gary was/is an M.D., but he was incognito
when he slept in my room on the night of
the really hard times.
He brought me Chicken Soup.
I have the Smaller Cooler he brought still.
I see where his writing in still on line.
Ellyn, his wife, shows me.
http://chronicles5.tripod.com/cancerdancechronicles/id4.html
I'm calling in his strength for the work ahead
this week.
He worked with Kids. So will I being doing that,
although the main work this summer is at home.
___
CANCER DANCE CHRONICLES
CANCER DANCE CHRONICLES 1-11.5
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(A WORK IN PROGRESS)
NUMBER 1-11.5
gary hartman
gahart@juno.com
(feel free to share this material as you desire, gah)
The Cancer Dance Chronicles
Introduction
These entries were begun to keep friends and family updated on my condition. They evolved into an enjoyable writing activity. Later, I began to receive encouraging feedback from many sources reporting to me that they were helpful. I offer them in part to feed my ego, but also as an aid to others in similar situations.
That I have cancer is cosmic joke, though not a ha ha funny one. For many years I cared for children with cancer. I enjoyed the career and know I did a good job, but by the end I felt I had logged one hundred years. The children and their families had taught me a lot about living and dying. As life and perspective changed, I was not able to give what I thought the patients deserved. I was able to leave pediatric oncology and begin working for social security.
I was diagnosed with a malignancy in the soft tissues of my pelvis called liposarcoma in mid 1998. The tumor was removed and no further treatment was indicated. A recurrence was found on a routine follow up ct scat in July 1999. I underwent radiation therapy and another surgery but, because the tumor now involved the bones of the sacrum it could not be removed. I underwent chemotherapy which ended in Spring 2000. Another recurrence January 2001 prompted another round of chemo and a third surgery which was successful.
The Chronicles start just after that surgery in November 1999. They have been written at various times usually to report new events, sometimes new feelings. There is just a little benefit to reading them in order.
If you think they might help someone, please pass them along. On the other hand God and bill Gates created the delete key for good reason.
Gary Hartman
THE CANCER DANCE CHRONICLES
#1
November 10, 1999
Dear friends,
Ellyn and I are home again and it feels good. A hospitalization is always an adventure. I tried to keep this one as brief as possible by getting up and walking the halls (the religion of surgical care) and did make a quick recovery.
Unfortunately the surgery was not successful. The surgeon could not remove the tumor unless he used a very aggressive procedure which has severe consequences at best and possible disastrous complications and no guarantee of cure . We had agreed before hand that he would not do this procedure (I could have had it done elsewhere but decided to say no thank you even before the UCLA surgeon voiced his negative opinion about the operation).
So the tumor remains. Letting go of a treatment plan is like undergoing a grief reaction but we are picking up and marching again.
We had a consultation by a wonderful, very smart and compassionate medical oncologist who suggested an aggressive chemo course which has a reasonable track record in this disorder. He works out of cedars-sinai . I think we (the whole family is really involved) will start the chemo in a few weeks.
Thank you so much for your wonderful thoughts and prayers. Keep them coming.
Love, gary
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THE CANCER DANCE CHRONICLES
#2
Dear Friends November 20, 1999
I feel as if I am writing some twisted newsletter but it is the most efficient way of letting folks know what is happening.
I feel pretty well. Am trying out some complementary treatments such as acupuncture and herbs while awaiting the big guns.
I had a venous line placed by an intervention radiologist at our local hospital. It was a slick job; perhaps 20 minutes. A great home care nurse has started us on care of this catheter through which blood can be drawn and chemo can be given, sparing my veins which took a hit just in the hospital.
We have word from the holy city of Los Angeles that treatment will start Wednesday 8:30 am at cedars-Sinai in la. First morning will require 8 hours of iv fluids and then Ill be hooked up to a chemo cassette to wear around until the next morning. Next day is thanksgiving; start at 7:30 and have 5 hours of iv and then can go with the cassette. We hope that I will not be too ill and will be able to commute to San Diego for dinner at my with family. We have been told that some patients have no nausea, some have a lot, so well see. The chemo will continue for 9 consecutive days.
Hope you each have a nice holiday. More details later.
Love, gary
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THE CANCER DANCE CHRONICLES
#3
Just a few thoughts:
November 23, 1999
It is the eve of chemotherapy initiation. Ellyn and I will be going to L.A. tonight to get settled in to beat the traffic tomorrow morning.
As the time for chemo approaches I have my anxiety increases: how ill will I be? How effective will it be? The adventure continues.
One of my great resources has been a large spiritual community. This network includes my own Elijah Minyan, the UCSD Catholic Community and many others who have been praying or sending healing energy on my behalf.
I have been wondering what I need; what are my spiritual needs and desires. I fell good that others are helping by praying, sending energy and doing other spiritual practices on my behalf.
Though I earnestly hope for a cure and am striving for a cure I know that that may not be in the cards. I also know that cure and healing are not the same. I have witnessed the deaths of healed persons and the cure of debilitated souls. I want the best outcome possible and that is what I wish to be prayed for me.
I need spiritual tools; I would appreciate continued kind thoughts and prayers for :
patience
acceptance of each moment without pushing away the fear, but the ability to stay with the fear which has become a part of life now
appreciating the world and the love which surrounds me
grace to understand what I can of this weird adventure
peace
humor
friends who can listen
Joe Parker at UCSD suggested remembering me in prayer and thought some moment between noon and 1 PM daily. That would delight me; it makes a community. I dont think a big fuss is needed, just a moment or so, or a formal prayer if you prefer.
Thank you so much for your beings. Garyh
THE CANCER DANCE CHRONICLES
#4
Hi folks
Thank you so much for your wishes, prayers, energy. Ellyn and I are blessed with your support which has been a great comfort.
I feel as though we have been on the yellow brick road (the 405) to the emerald city (la/beverly hills) and seen the wizard (chief oncologist) and his helping good witches When I looked behind the screen there was still magic.
the chemo week was draining in part because we drove back and forth 6 times. the facility in l.a. (cedars-sinai comprehensive cancer center). It is truly a wonder. an outpatient unit open 7 days/24 hours. no need to go to some strange ER in the middle of the night. the place reeks of competence and comfort. open, 2 stories, skylight at top, trees , fish tanks and 18 little rooms with beds with tv/vcr and 20 comfortable chairs in the middle. people handing out sandwiches for lunch (in fact on one day a very nurturing volunteer interrupted the doctor to push her sandwiches and was clearly disappointed because we did not lighten her load from her food cart).
Alas, the travel is too much for us and we think we can do well with our local oncologist who can follow the protocol; well make the trek to see the chief oncologist periodically; at least that is what were going to try.
The chemo was a bit rough; moderate nausea. I am thankful that it is given in outpatient setting so we can stay at home.
I am not sure how much to write about, how much folks want or need to know. Ill try to find some balance.
the nausea from the chemo lasted a few days longer than I had hoped. The days following chemo found the expected low blood counts. I have escaped the need for transfusion of red cells or platelets this time. My white count dropped to very low levels and I started a daily injectable med which is a natural hormone which boosts the marrow production of white cells. What I did not realize was that the force of the stimulation of the marrow cells put pressure on the inside of the marrow cavities of the bones and I had a bout of alarming pain for which I spent some quality time in our local hospital e.r. on 12/5; all was well in a short time and we find that this is not an uncommon reaction. Ill know better in the future. I had an opportunity to practice staying conscious in the midst of at least some of the scary moments.
our moods vary a lot, but overall we are hopeful and forward looking.
the plan is to start up again 12/15 and do the work in encinitas.
Love to all, gary and Ellyn
THE CANCER DANCE CHRONICLES
#5
Dear community 12/15/99
again, I thank you for your support for ellyn and me and our family. I have lost track of who gets this so, if this is an uninvited spam type thing just push that delete key. Even as I type these words we are starting the 2nd round of chemo. We are taking advantage of our close by hospital and home health services. Things are going well so far with a few hitches due to differences in techniques. We are looking forward to a smooth course.
The last week has been a good one. Finally I had energy; I enjoyed life as it flowed by. I had a nice visit for a few days with an old friend from Indiana, was able to show him some of the san diego experience including a walk on the beach, a sunset. Only a few days before I was needing to nap and had my e.r. adventure. So I can feel pretty well for a few days of each cycle. This is good because at low points I could not foresee normal activity.
A few issues of interest:
judgement: ellyn and I had gone out shopping a few weeks ago. I dropped her off at one store and drove across the street to do a short shop and pick her up again. As I drove I had the sinking feeling that I was not fit to be driving; I was distracted by the movement of the holiday drivers and the maneuvering of the parking lot. There was some of the usual aggressive driving which befuddled me. After I parked and finished shopping I realized that I really could not drive safely. I had to call ellyn on her cell phone and ask her to walk over , packages in hand, to rescue me. I waited forlornly, smelling the onions and sauerkraut in front of home depot until she rescued me. A few days later I was ready to drive safely. One of the breakdown products of this drug has an alcohol like effect and I am a cheap drunk (cannot drink) and the effect lingers for a few days after the course has completed, so both judgement and cognitive function can be affected: a risky combination.
FLUSH TWICE: a sign in the restrooms at the cedars sinai center advised that patients on chemo should flush twice after using the bathroom. What a peculiar feeling to realize that my pee is more toxic than yours.
HAIR I: I am now basically a bald person with a few wisps of hair hanging on by shear hope. The whole hair thing has been a grieving process for the last few weeks. I started to watch hair come out a little at a time, then chunks. It was a while before if became noticeable on my head. I have been surprised at how upset I have been ; it is a change of body image. I have not thought myself vain, but I guess I have been happy with my curls at my advanced age. I also now wonder what it will be like to look into a mirror, and ellyn reminds me that she will be looking at me all the time. I am reminded that bald is now in for men, a sort of sexy look. Right! Id just as soon pass. So I had to do the grief work letting go of gary with hair and did the work and bought electric clippers.
I asked ellyn to use the shortest setting and just go with the buzz. Everybody grieves at their own rate, however, and ellyn used the scissors and longest setting to preserve my hair in a shorter, but neat cut most of which came off in the shower this morning. My family is better off with the slow disappearing hair rather than the plunge. My older son, aaron, reminded me that whatever the trauma the end result was only cosmetic and suggested using wax on my pate. I have a few nice hats. I had toyed with the thought of having hair painted on my bald head, but think that would be too clown like. Then again, there is something clown-like about this whole process
HAIR II: hair loss is stated to be 83% with this drug. Ellyn thinks I have already had my 83% but I am heading toward 110% of head hair, plus the rest of my body hair is also drifting away. Most interesting is my beard. It is coming out in patches and I am sure it will all be out soon. I see an unfamiliar face edging out from behind the hair. I am anxious about this new/old face. It has wrinkles, I think. I have not seen my naked face since I left the army in 1970. Ellyn has never seen me without my beard, nor have the kids. We all will meet a new person.
HAIR III: somehow ear hair hangs on; what a great scientific study it will be to understand why ear hair clings when the rest gives up. I see nobel prizes for those who solve this important puzzle
chemo fog is descending so it is time to stop. You need not worry about yourselves: I have no intention of driving and Ill flush twice.
Love and great holidays to all,
Gary
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THE CANCER DANCE CHRONICLES
#6
Progress report 1/6-11/00
Dear friends,
I trust all of your holidays were satisfying and all are back on track.
My own career has had a few new turns. After two courses of chemo we trekked to the holy city of los angeles for assessment. As most of you know, a ct scan is a fusion of computer and x-ray. Virtual slices are made, in my case throughout the pelvis and abdomen. There are 50+ slices in such a study. The trick is to match comparable anatomic slices containing tumor in ct scans done before and after chemo to study any change in tumor size.. In my case there were several slices in the before and after chemo ct scans which were comparable and showed the tumor.
In those pictures it is clear that the tumor has not grown. In a few of the slices there is a suggestion that the tumor may have shrunk a bit. In the broad range of possibilities of results these reports are on the positive side, for sure. I am pleased.
The wiz, dr forscher, has elected to introduce a new chemo agent, adriamycin. It is given over a 48 hour infusion by pump. It is a red liquid and now I can see the toxicity of my urine because it is a garish color (a color I think to be found in the 128 but not the 64 box of crayolas) and I am highly motivated to flush at least twice. I am told to expect lower blood counts and mouth sores in the week after treatment. It is time to be concerned about fevers, contact with people who might be contagious, gentle tooth brushing ; it is all just part of this new career.
Some thoughts:
I was extremely apprehensive while thinking about and waiting for the results of the ct. I had been feeling subjective aches and pains which fed my anxiety about possible tumor growth.. I was reminded of an observation I heard only after I had been practicing pediatric oncology for several years. During a typical clinic day there was much work to be done: exams, procedures, reading bone marrow tests, x-rays and more. I was told that parents would study the faces of the doctors. If we frowned there was fear. If we came out of a room or from an x-ray or a microscope with less than an enthusiastic look they felt dread. I had no inkling at the time of their feelings. I certainly shared that depth of anxiety when facing my own results as I studied the face of the doctor.
I recall that the authors of a book about long term childhood cancer survivors titled their work the Damocles syndrome after the Greek legend depicting a person at a wonderful feast, enjoying life but having a sword over his head suspended by a horse hair; his life could end or be changed at any moment. Such were the expectations of these families. So do I feel now, living fully but from cat scan to ct scan.
On living the bald life. Head hair is not only cosmetic but functional. All of my bald brothers (and occasional bald sisters) have known what I am discovering. The loss of heat energy through a bare head surprisingly large. I am fortunate to have a nice hat collection given in part by my older children. I keep a hat with me at all times especially at night when the cold cold wind blows
I am quite used to being bald and sort of like it. My little bit of hair has been compared to a fuzzy baby bird A few people including Ellyn have told me I have the look of buddha, bald head, large belly. I look less like a buddhist monk as they are lean. Perhaps one of the hindu gurus as they are often bald and fat; their pictures often show them with impish smiles which I would like to have. Ellyn then reminds me that I also look like yoda. What an ego ride: from chick to buddha to yoda in a few moments.
Lastly, I had not fully recovered from the nausea of the recent chemo (still havent, really) but had the opportunity to attend a religious service and also talk with a person who is helping long distance with a complementary practice called Awakenings. I had to come to grips with issues even more important than hair. What do I want out of this, what am I requesting of What/Who Ever-IsOut-There-Bigger-Than-I?
I do want to be cured and have a functional body.
A cure alone wont do it. No matter what happens I also want to learn what I can from all of this. I want the grace not only to accept the experiences but find joy . Can I learn to love that ill grown lump of tissue?
Love to you from yuddha (?boda)
THE CANCER DANCE CHRONICLES
#7
February 15, 2000
Dear friends,
Ellyn and I just returned from L.A. The ct scan remains unchanged which is good. In fact it is very good. I have been having some progressive symptoms in my left leg which seemed certain to be due to tumor. It is not clear what is causing the symptoms; it could be a cluster of tumor cells too small to be detected by the ct or an accumulation of fluid or some other cause. Whatever is the cause it is not a large tumor growth.
The worry level before the test had been more than usual and the night prior to the exam was filled with worry. Of course I tend to worry even when things are great, but the worry level appeared appropriate to the situation. I am just realizing how good the news is. It is odd that lack of progression is now considered progress, or at least good news. Whatever the case, Ellyn and I are enjoying it. My daughter advised me that I could now renew 1 year magazine subscriptions and take care of my teeth. Ill have two more rounds of chemo and then back for another ct.
We usually travel to L.A. the night before the exams to avoid rush hour traffic. Early in our visits we learned that several hotels in the area gave discounts to patients of Cedars Sinai Cancer Center: THE CANCER RATE. We have taken advantage of the CANCER RATE a few times in the past. This time, since it was Valentines day and since the worry factor was higher and since we did not need even those excuses we decided to stay at Hotel Sofitil an elegant French hotel within walking distance. It was lovely, pretentious, and very overpriced even using the CANCER RATE. In the future well be more modest.
The last course of chemo was more rugged than the others. I felt deeper and more longer lasting nausea. A few friends asked if I had considered using marijuana but I knew that the antiemetics I was using were really good; marijuana had no advantage. When I learned that even the best antiemetics had decreasing effect when given for several days consecutively I reconsidered and thought it would be worth a try. The family discussion in which I told the kids that I was going to try grass was quite funny. When I explained that I had some exposure to the weed in the past (I was an adult, my experiences were so-so and not all positive) there was brief uproar. I now have to endure such comments as its Bob Marley day, Ill sit on your left (someone had to explain that to me; if you dont understand that ask your kid or their D.A.R.E. officer). I did try it; am not sure how much it helped but will try it again earlier in the course if I feel bad. ITS LEGAL for me.
When I was at UCLA recovering from surgery was playing solitaire late one night. I lost a game and looked at the pile of losing cards in my hand with frustration. I suddenly had the realization that I could reshuffle the cards and continue to play. I was empowered to cheat at solitaire! I had never understood that before.
So, just some of the advantages of the cancer dance: meet new and interesting people, consider lack of worsening as progress, get discounts at selected motels, smoke marijuana legally, cheat a solitaire. Id still rather not.
Gary Hartman
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THE CANCER DANCE CHRONICLES
#8
March 13, 2000
Dear friends
Our family took a few days out to enjoy the grandeur of Yosemite a few weeks ago. We stayed at Wawona in a lovely old lodge. Ellyn and the kids skied one day. I have learned not to ski after trying every ten years or so, falling each time enjoying the snow without gliding on it. Once I took the ignominious ride DOWN the ski lift, one the smartest moves I ever made.
The weather was delightful. Crisp. The little pond outside had frogs who were loud, especially at dusk and early night when animals pray. They could have prayed at dawn, but the pond froze each night.
On our last night snow fell. As we were driving out the next morning we gasped at the beauty of the fresh snow on the splendid trees and remembered to appreciate the life which gives us the ability to appreciate that beauty. That same snow, treacherous underneath our wheels, also reminded us of the frailty or life and we gasped for different reasons as we felt the skids. The life affirming and the life threatening came together.
I have decided to put the chemo on hold for a short while. This decision can sound confusing and has caused some dismay in a few friends and family members but there are good reasons. Ill try to explain.
I have been fortunate to get through the chemo courses without many medical complications but I have had progressively worse nausea and malaise. I found myself depressed and discouraged as each course ended. I have been more and more reluctant to start each cycle. The wimp factor. I recall the children I used to treat who had so much trouble with their therapy that we dragged them to the treatment room. Now I, an adult, am the dragor and the dragee.
Nights are times when there are no distractions and experience can be very focused. I had a brief episode one tough night when all was quiet; I felt as though I was experiencing death. It was fleeting, ineffable, scary but also comforting. I awoke with more energy the next morning realizing that I needed to reevaluate my condition.
For starters, what are the goals of the chemo, what is the plan ? The questions may seem peculiar and the answers simple but they are not. There are some cancers in which the number of courses and doses of chemo has been established by many observations and clinical trials. Lymphoma, breast cancer and others fall into this category. Liposarcomas do not, especially when the ct scant shows a persistent mass. I realized that one of my frustrations was that there can be no absolute schedule of chemo in this situation; a path through a tunnel but without a light. Also, chemo itself is not curative for this disease, so it is a holding action, or at best a way of shrinking the tumor for subsequent surgery.
So how can I possibly make such an odd choice? First, it is difficult to prove that the chemo itself is continuing to keep the tumor at this size, although logic seems to make this a reasonable assumption. Second, I have been taking a new drug, used for treatment of diabetes but seems to make liposarcoma cells mature into less malignant cells. These are findings are only about a year old, but hopeful. I have been feeling better since going on this drug, hesitating to pin too much hope on it but happy to have it to try. Third, although this may seem like a wacko idea I did check it out as carefully as I could. I spoke first with Ellyn, then both oncologists and a psychiatrist. If they were not keen on the plan at least they acquiesced. Fourth, I am having a ct scan in a few weeks to keep an eye on the tumor size.
I am sure denial is an ingredient in the decision. I want it both ways: free of cancer but unwilling to pay the full price at this time. I remain very much engaged with life, trying to enjoy each moment, though fear still creeps in. I relish family activities, puttering in the yard, a little house husband work, listening to music, meditating, praying.
Also I have a few special projects. We are blessed with a lot of trees in our yard, some bear fruit, some are quite large including a Torrey pine which must be 100 feet tall. While in Yosemite I bought a seedling. The seedling is of a Sequoia. These trees grow large over time, a few to 300 feet, living up to 3,000 years. Yes, they can grow in this area. There is a brief passage in Genesis in which Abraham takes time to plant a tree in a place to which he will never return; a large tree which will shade some future generation. It is an act of faith to plant a tree under whose shade you may never sit; I look forward to see at least the early growth of this tree. It is also making mischief for someone. Imagine the future when the tree dominates not only the yard but all of Encinitas; I wonder if some person will be carving a hole in it one day to drive a car through. Ill not keep it small and shadeless as a bonsai as the package suggests.
I am shifting to summer weight hats to keep from frying my scalp. It is peculiar that even though I remain bald I use shampoo to wash my scalp. I think it is force of habit. At least I do not use conditioner.
Lastly, I am sure you have noticed and may have purchased the stamps supporting research into breast and prostate cancer. I am looking forward to the liposarcoma stamp and will buy lots when they come out.
Again, thanks for all your support
From out on a limb, love to you all, gary
THE CANCER DANCE CHRONICLES
#9
April 24, 2000
Dear Friends,
Again, I thank you so much for your great support. I know it has helped me. I have been off of chemo for several months now. I feel well. I have had an MRI and CT scan, both indicating that the tumor has not grown and may be a bit smaller. I have had no chemo, but have been treated with your prayers and Actos ( the diabetic medicine I mentioned before which seems to have a beneficial effect in liposarcoma cancer). Ive been asked if this is a remission. I avoid that word as it has elusive meanings. I prefer to call it a reprieve. At best I havewell, a long reprieve, because a long reprieve is the best any of us have.
I am still left with some weird, negative conditioning from the chemo. When the antitheft warning light blinks on our car radio I feel a twinge of nausea. It took a while to realize that it resembled the flashing light on the chemo pump which reminded my body of the associated nausea.
I saw a cloud last week that was so beautiful I hurt when we encountered each other. Such a moment may be a spin-off of being conscious, remembering to love each moment. As we drove out of a toll booth on the toll road to Los Angeles I heard: have a nice day no matter what. Was that an invitation or a command? Did it come from the toll booth or a higher authority? I have been pondering the issue of being thankful for life not only when things are well and the view is beautiful, but when life seems harsh; an ideal for all spiritual paths. There is a brief practice in Judaism of remembering to be thankful for life just on awakening, even before opening the eyes if possible. If you can remember to remember, the rest of the day has perspective; other problems (cancer, for instance) may fall into place rather than being overwhelming. I have been able to find that path much of the time. After surgery and while on heavy chemo, however, I could not reach that appreciation. At first I was certain it was a weakness (real spiritual people always are thankful), but I realize that in the midst of the chemo I had lost some capacity to appreciate life. I do not have an answer: to keep digging deeper on the thankfulnessnomatterwhat path or remove obstacles (chemo, for instance). What do you think?
Ellyn and I enjoyed a few wonderful days in the magical state of New Mexico. We walked to a natural hot mineral spring pool gurgling out of the hills just at the edge of the powerful Rio Grande. When we reached the pool we were surprised to find a young lady already there, bathing but without the benefit of a suit. I coughed and gave a hearty greeting so she could put on a suit if she wished; she did not wish. Oh well; we entered the pool (with suits); there was so much natural beauty around us that I did not know where to point my eyes.
At a bird sanctuary we discovered how skilled people manage the Rio Grande to duplicate its natural cycles of flooding; they host flocks of thousands of huge cranes in the winter months. The cranes had left for the season but we shared the area with many song birds, mostly red winged black birds who have a startlingly pretty call and are louder than their teeny bodies would suggest. There were a few giant herons, and multicolored ring necked pheasants.
We had admired a salt cedar bush in the courtyard of an inn: reddish stalks, feathery leaves and purple flowers. In the bird sanctuary we found that this lovely, seemingly innocuous plant had become a frightful danger, choking the marsh and waterway. It gave nothing to the animals and crowded out the plants. The staff were making enormous efforts to control the plants, plowing them down, uplifting roots; acres and acres of large tree-like plant remains were stacked ten feet high but so many more acres and new plants were growing. How hard they are working to save this place of beauty, home to so many thousands of creatures, many close to extinction. How like a cancer.
We stayed in an inn run by an African American family who had moved to Albuquerque from Georgia thirty years ago and added the culture of the South to that of the Southwest. Breakfast had both grits and green chile sauce on the table.
On our way home, I was saddened as I stood in line for boarding passes watching Ellyn sitting quietly having a bite to eat, absently gazing. She might have been some lonely person; I was struck with the insight of the impact on her if I were to die.
We attended Mass on the Jemez reservation in an ancient white adobe chapel with beautiful paintings on the walls. We enjoyed Jewish services in Santa Fe run by an old friend who discussed his own cultivation of thankfulness practices.
By the way:
The marijuana did not have much of an effect and I returned it to my supplier.
I may not have been clear about the giant redwood. Although it has the potential to become one of the worlds largest creatures it starts from one of the worlds smallest seeds and mine is but a twig. One person laughed when she saw it, expecting to see a huge log in the ground. We planted more potential than tree.
My nose and ear hair finally drifted off but now my hair is growing back rapidly and is at stubble level.
So, I am feeling well, reprieved, listening to my hair grow, soaking up the benefit of your prayers, seeking the attitude of gratitude and keeping a look out for whatever natural beauty presents itself. Love, Gary
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THE CANCER DANCE CHRONICLES # 10
June 24, 2000
Dear friends,
I have not written in a while because I have been better and it is harder to sound profound when well than ill. Let me begin with the bottom line. A recent ct scan is still good. The mass is still there, but no larger. I had not been scheduled for a scan until later, but I had some aches and pains and, predictably, I launched into the fear mechanism. could the back pain be..THAT?it must be, oh my (as in lions and tigers and bears). I had not had the need for any pain meds for a month so this new discomfort was disturbing. We have been trying to make summer plans, but felt we could not until this was cleared up. Thus, the early and favorable ct scan.
I recall that many years ago researchers chose to title a report on long term survivors of childhood leukemia and their families The Damocles Syndrome. Damocles was one of those who lived in Greek legend: he ended up at a great feast, party party party, with all of his hearts desires placed in front of him. Over his head, however, hung a large sword suspended by a horse hair. The researchers who wrote the book felt that this story described these families: enjoying the party of life but wary of the sword of recurrence which could drop at any moment. That rings so true to me. Usual aches become unusual fears.
Whatever is our view of life, death is an awesome part of it and can be a powerful advisor. This is not meant to be maudlin or scary. The mentor who taught that your own death is just over your left shoulder, just out of sight, taught well. Look there ! look again! You can never quite see it but if you are aware of its presence your life can take on added intensity. I think that the extreme treatments and closeness of death had kept my thoughts focused (except when I was enveloped in chemo fog). Now, as I dare to relax a bit and lose that focus, the thousand distracting parts of a normal day ooze in to fill the void.
I first realized the close connection between danger or death with this kind of extreme centering many years ago when I was at a meditation retreat with Vietnam vets. We had just done a concentrated walking meditation during which we were taught how to observe each step in minute detail. One of the vets recognized this was like walking point (lead) on patrol. For him, too, the edge of concentration had been associated with danger.
These conditions can be found in peaceful settings. I am about to take a week away for a contemplative retreat in silence. It is a privilege to live the monastic life for a time. I always feel refreshed and enjoy a new world orientation afterwards. It is one way to live that engagement with life without having brother death and chemo at my side to stoke it up.
Such focus and concentration can have many benefits. Each moment spent totally engaged in the world, each breath fully experienced, each step appreciated, each color savored can be treasures enhancing life.
I dont seem to be dying of cancer and I do feel really well. As many of you know I have been back at work half time for several weeks. It is going well. I do get tired at the end of the day and I think the sitting on a sacrum that is not solid is what caused the pain. What a miraculous gift I have been given.
I have wanted to share some of my thoughts from the earlier days of this journey. For instance, one summer we went to visit the kids at camp and the car broke down. I was angry and confused. I could not conceive of the possibility that I had cancer AND a car breakdown. I felt I deserved to be immune from any other trouble. Another time, while at a family dinner we were lining up to get food. Several older and ill relatives were present so I wondered the etiquette of queuing: does the cancer guy on chemo get in front of the older lady with dementia? What would Dear Abby say?
I have picked up a phrase from a set of historical novels about the British Navy in the early nineteenth century. They used to say I give you joy . For instance, I give you joy on you seeing your dolphins. I think we lack such a warm way to communicate heart to heart. Even though it sounds awkward these days I am trying to revive it into ordinary conversation.
At this time I am not sure how to respond when people ask how I am. I feel well and am functioning but still have the tumor and its implications. As some old punchline may have said Cancer shmancer, as long as you have your health.
I give you joy on this feast of life.
Love,
Gary Hartman
CANCER DANCE CHRONICLES, 11
February 9, 2001
Dear Friends,
First of all, I am not sure who is receiving these anymore, so if you find you have no idea what this is or who I am, feel free to delete.
I was hoping I had completed the cancer dance and its chronicles some time ago. I planned to write nothing or to pick a new title such as Life Dance Chronicles or Relatively Minor Illness Chronicles. I have had a wonderful life off medication, surrounded by love, engaging in the life cycle, birthdays, holidays, a wedding but a recent CT revealed there has been growth of one of the masses.
Oddly, after denying it to myself, I have realized that a tiny part of me had been missing its cancer. How strange that must sound to you; it sounds ridiculous and alarming to me. I wrote earlier that when cancer forced me to confront my death it sharpened awareness of each moment of life. For a long while this gift of cancer consciousness had led me to experience life as it unfolded moment to moment in eager focus. Lately, as I have been coasting through life, I had lost that curious cancer high and the edge it provided. It is like missing an uncle who can teach a unique outlook on life and fascinating philosophy but has very bad breath. I know there are better ways to achieve this state of awareness and would prefer to try them. Having cancer also presents a way of getting a lot of attention, but I would not recommend it as a neat way to meet women.
At the doctor visit Ellyn and I were suspicious when the oncologist spent more than the usual time reading the ct scan before coming to see us. Although I was not startled when he gave the news, I felt a dull inner thud as the impact started to sink in. It is an emotional chore to switch to this disruption in life from doing business as usual, relying on that great tool, denial. My mind did not realize how I had built a sense of entitlement to a future constructed out of assumptions, until the x-ray report cracked that image. Ellyn and I then spent some time in blessed shock which has melted away to let the feeling of grief is seep in. I can observe myself reacting in a classic grief reaction, denying (could this be something else on the scan?), sad, angry, even a moment of trying to bargain my way out. At times I have to search hard for line between the feelings of normal grief and those arising from loss of balance.
One of the hardest parts of the process is telling friends and family about a recurrence. There is a timing and a sort of etiquette which requires emotional reserve. I hide behind e-mail. We were at several joyful events at which the news of recurrence would diminish our joy and that of ones we love so we were less than candid in answering questions. I began to feel like press secretary to some embattled corporation or politician, evading questions with enough spin to avoid full truth without actually lying, knowing that the story would unfold soon enough.
We have pursued the search for the most appropriate treatment through a twisty path. I am convinced the most rational plan is to have a few courses of chemotherapy followed by surgery to try to remove this mass. I have also looked into alternative forms of treatment. I am so entrenched in standard medical care that I find it difficult to comprehend other systems. I understand the great enthusiasm for alternative methods and I respect the providers who were kind to spend a lot of time with me. I have said no thank you to standard treatment when I did not agree that the benefits outweighed the risks and I must put non standard therapies to the same tests. I have prepared and consumed tea from birds nest looking twigs and considered several diets of mutually exclusive foods, supplements, and manipulations. Ill choose some to complement the standard care which will remain the core of treatment.
When I force myself to consider the principles by which I extract a strategy from the many prospects the following are key:
The natural history of liposarcoma is one of repeated recurrences. Over time the recurrences behave in a more malignant fashion and are more difficult to treat; eventually patients die of the illness so it will be a pleasant surprise if treatment is curative (my cynical self sees a cure as the opportunity to die of something else)
AND, though the dying process soaks me with apprehension from the human standpoint because there are profound losses and fears (how will I get from here to there?) it does lead to the next allotment of existence which promises to be pretty pleasant and is a bit of an adventure
SO at some point the risks and unpleasing effects of treatment will outweigh the benefits and it is reasonable to say not thank you
HOWEVER I still look forward to the experience of a lot of life, so it is important to push on
ALSO I should have no regrets in the future about the choice. For example, when I think about the decision to stop the chemotherapy I have no second thoughts. I have had a great 10 months and there is no evidence that further chemo would have given me a drop more of worthwhile time.
I am confident that my attitude and choices are best for me and will get me through whatever I have to do. For all of those who have sent prayers and energy on my behalf, thank you. I am confident that prayers help, especially when they are for healing rather than a cure (they are not necessarily the same), for strength to maneuver through whatever the future brings, to help make decisions, to allow me to mix the required tears and fears with wonder and curiosity, to balance gloom with hope, to use my moments wisely. In spite of earnest prayers and the best treatment, the physical results are not up to us. Our choices are in attitude more than outcome.
I cannot deny the dread that cancer and its treatments bring. I wither when I think of chemotherapy effects, the hospital and the post op period and pain. I try not to get lost in the fears yet not to deny them. At the times when I can embrace the fullness of life I can live in greater freedom. Fortunately I have had remarkable teachers who try to guide me through the maze to find the liberation this balance can bring.
Years ago Ben dragged me to a pistol range where we rented a gun and blasted away. I was surprised at how much pleasure I found even though I was conscious that my round, bearded, spectacled self stood out in the crowd of taught marines and policemen. Later, when the cancer recurred I made paper copies of my ct scan to use as targets, to kill those cellular enemies. No one at the range questioned what I was doing with such odd bull's eyes. I learned a few things: first, in spite of the satisfaction I felt, I am a lousy shot, spraying as many holes in normal tissue as cancer mass. Second, my temperament prefers a more gentle approach to healing.
My ultimate lesson was shoot only when the target is an inch from the muzzle. But we dont get those choices, do we?
Love,
Gary Hartman
Gahart@juno.com
CANCER DANCE CHRONICLES, 11.5
Dear friends,
Just a quick note to let you know that Ellyn and I are home again. The surgery went well at UCLA. The surgeon was able to remove the new tumor growth and found no surprises. The post op course had no complications. Healing will take a long time, but that is standard for such surgery. It is sort of like resetting the odometer of a car.
The surgeon, for whom we made the trip to UCLA is a very intense gentleman. When I was there 11/99 he could not do what he wanted and was very reserved in expression. This time, on several occasions, when he came to visit he did a little jig. It is an extraordinary moment to watch your surgeon become so happy he dances to see you.
Ill need further treatment to prevent/delay recurrence from the cells that must still be there.
More later,
Love, gary
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