Al's Story

Updates:

Recurrance: Written September 1996
The Beast's ambush is foiled: Written March 1998
A postcard from AL: Written October 2002
Double victory lap : Written April 2005

Personal History: Written Christmas 1995

I am a 58 year old white male living in the San Francisco Bay area since late 1987. For the 25 years before that I've lived in Florida and the Caribbean. I am 5'7 a salesman, physically active, and -- just prior to surgery -- described in my medical reports as in robust physical condition (and I'm back to that today).

Before being diagnosed with esophageal cancer in April of 1995, I weighed about 160 pounds, I smoked for 37 years (probably 50-60 pack years). I had quit over 5 years before. Nearly a non drinker. Married for 17 years until eight and a half years ago.

Symptoms and Diagnosis:

In March of 1995 I went for a routine physical just because I had not had one for three years. I had no symptoms. I did mention to my doctor that about six weeks before I had a period of severe stomach acidity for several weeks. I took a lot of alka seltzer, gave up coffee and tea. Began to drink about a quart of milk a day and the upset went away.

The blood test showed a little anemia. Doctor ordered an endoscopy. Endoscopy revealed a tumor which biopsied positive. The tumor was rather advanced. I was referred to a surgeon who thought I would have 6 months if I did nothing, 12-18 months if I did radiation and chemo and would do better with surgery. He proposed surgery a soon as possible. No one suggested I consult with an oncologist. I did not.

Treatment:

I had the surgery on April 17th. Esophagus and part of stomach removed and resected. The surgeon said he got everything he could see. He removed several lymph nodes most of which were positive for cancer. I was in intensive care for five days; then moved to the general hospital population for two days.

Went home and my sister came to take care of me for two weeks. I slept a lot. Tired easily. Found it difficult to swallow, eat, and keep food down. I lost another ten pounds besides the twenty I lost in the hospital. The wound in my throat got infected. Back to the hospital for a procedure to insert a drainage tube and a course of antibiotics. Over the next ten days the antibiotics kicked in and I began to get better. I began to walk a bit. I was able to walk a half mile or a mile although slowly and with several rest stops. Usually needed a two hour nap afterward. But, could feel myself getting stronger every day. Ate a little better. Ate a lot of Ensure Plus. As I was able to eat I ate lots of ice cream and heavy fattening foods. The weight came back and stabilized at about ten pounds under previous weight -- that would be somewhere around week ten or twelve. I tapered off the high fat foods and got some more protein in the diet.

I increased the exercise. By ten or twelve weeks I was walking five miles 4-5 times a weeks. Back on my bicycle and had done a few flat rides of 20-25 miles. I needed a nap of a hour or two every day. When I asked about that, my doctors told me I was pushing too hard. I backed off a little bit. But, did not want to believe that the exercise was bad for me. And in fact I felt better in every respect except the need for the naps. Somewhere in that time period I was back at work part time.

I felt like my mission for the first couple of months was to recover from my surgery. I had talked with a chemo oncologist who said I should start chemo at about eight weeks and that I should concentrate on recovery and weight gain in the meantime. I began to read about cancer in general, esophageal cancer, and alternative therapies.

Chemo and Radiation:

I had a couple of additional conversations with the chemo guy. Since he was very reluctant to participate in any of the psychological aspects of healing, I began a serious search for another oncologist. I met another oncologist that I liked who liked my chances with radiation and chemo. I felt better with her and decided to go with her. However, my search had also taken me to MT Zion Cancer center in San Francisco. I already had an appointment there so I went and had a set of CT scans and blood tests (this was at about week ten or eleven after surgery). They advised that studies showed that radiation did not appear to improve longevity for people in my stage of cancer. That I should return in three months and if the cancer had returned or appeared at any other site, they would treat that. I thought about for several days and decided not to have radiation or chemo for now.

My search had taught me that there were some real down sides to radiation and chemo (not merely side effects but actual damage to your body), there were some alternative therapies to pursue (none of which were recognized by conventional Western medicine; they did, however, get a little faint praise from a minority and real support from a handful of Western doctors).

As time goes on my progress has continued steadily. I kept getting stronger. I did a challenging 60 mile bike ride at about week 17. and an easy 65 mile ride at week 24 that was not even tiring.

Miscellaneous side effects and notes:

Even before surgery my surgeon thought the cancer had probably metastasized. He felt a lymph node at my collar bone which was enlarged and hard. He removed it during surgery and I biopsied positive.

Immediately after surgery -- even before I woke up - I apparently suffered some respiratory distress. The breathing tube which had been placed in my lungs was reinserted and remained for five more days. When it was removed I was unable to speak, (I was able to whisper) my surgeon said it was a temporary paralysis and could last a few days. As time progressed as I queried him further he said it was not unusual to last a week or two, several weeks. He always suggested that if it lasted a couple of more weeks, it could be corrected surgically. After about 5-6 weeks I went to see and Ear Nose and Throat Guy. He said if it persisted another month he would operate. As I left his office I asked for a name of a speech therapist. I went to see him. He examined me and said I had one paralyzed vocal cord, limited range in the other (you need both). And both were bent. Probably as a result of the intubation. He gave me some exercises. I was immediately able to get some squeaks out. Three weeks later I was talking normally. He regarded my recovery as extraordinary. It is an interesting lesson to be unable to speak for two months.

At month seven after surgery, I was back to work as full time as I want it to be. I've changed my work style so that I work at home. I schedule in large portions of time for exercise, attending support group meetings, and some time to read and study about nutrition and health.

Alternative Therapies:

I see an acupuncturist twice a month -- his practice is 50% cancer patients. I get some nutritional supplements, and immune system assisting pills from him as well as some capsules of eight Chinese herbs which he says are specific for esophageal cancer. I also drink Essiac tea.

I consulted privately with a nutritionist. Although I was back to three regular meals a day and could eat solid food, I was concerned that I seemed to be unable to put back the last ten pounds I had lost, that my bowel movements were usually very runny, also I wondered if my flatulence was ever going to go away. She thought I was pushing the exercise too hard. Advised me to graze five or six times a day rather than eat full meals. Suggested eating a lot more grains, soy milk, fresh fruits and crucifeous vegetables. Wanted me get some acidophilus to supplant the digestive bacteria in my intestines. (the flatulence came from incompletely digested carbohydrates) Suggested I avoid red meat and switch to organically grown foods and drink spring water (I felt this advice was to relieve load on my immune system in cleaning up the toxins in my body. ) She suggested I cut back as far as I could on sugar and chocolate. She also said that I did not have to become a monk. I could treat myself to anything I wanted if it were very infrequent. (You know, that is great advice. Had she told me I could not have something I would have immediately begun to crave it. Since I had permission to have anything, I can wait months for a little taste and do it without guilt).

I have done a little with mediation, guided imagery, Qi Gong. I'm not doing any of this on a continuing basis but I believe I ought to.

I feel strong and well and have been living my life fully for several months. I have reconnected with my social life.

I go to a support group at the Wellness Community. They are a non-profit and have support groups specifically for cancer patients and separate groups for breast cancer, prostate cancer, support people and long term survivors. They meet weekly and I attend about half the meetings regularly. I look in occasionally on another group that is sponsored by the hospital where I had my surgery. I found still another group -- newly formed -- called Voices in Healing which meets in San Francisco. It is available to people with life threatening diseases and their support people. It includes AIDS people and as well as one person with Rheumatoid Arthritis.

Al's Affirmations

In the first days I was home after surgery, before I could remember how many boxcars were in the train that ran over me, my sister, Elaine, came to stay with me. She wrote a little affirmation on a yellow post-it note and stuck it on this mirror I have over a vanity. The mirror is huge -- like a sheet of plywood -- and inivited more post-it notes which have slowly spawned.

1. I now chose to be healthly and free of disease.
— Elaine Levine, April 1995

2. This poor, pathetic cancer has no idea of who it is f*cking around with.
— Al, May 1995

3. May your eyes always sparkle, your hair always curl, and your shadow never grow shorter.
— Arab blessing contributed by PWB, June 1995

4. My immune system wants another chance to go head to head with this cancer.
— Al, June 1995

5. If this cancer is coming after me, it better be ready to deal with someone with an attitude.
— Al, December 1995

6. And my oncodoclady has an attitude, too.
— Al, Jan 1996

Recurrance: Written September 1996

This is the news no one wants to hear about anyone. And no one wants to be telling it on themselves, but...

On September 6th, 1996, I learned I had a recurrence of my cancer. It was an extension actually. A tumor which probably began as a strand from the original tumor a year and a half ago lodged against a vertebra and has grown. It has been dissolving the body of one vertebra and at its deepest penetration it is more than 50% gone.

The worst news is that the vertebral erosion was noted when it was one fifth the size in report of a CT scan I had last April. I was never told. And, apparently my oncodoc missed the significance of the report.

When I learned of the current problem I went into high gear to determine where I stood, what was possible, and what to expect. In the subsequent two weeks I consulted with the oncologist to whom my case had been turned over. (Another story) Also saw my surgeon from a year and a half ago, a new oncologist that he referred me to, another nationally renowned oncologist at Mt. Zion in San Francisco, and a radiation oncologist. I also had a bone scan, MRI, and PET scan (a rather new super high tech imaging technique) I also met another surgeon and was reviewed by the MT Zion tumor board.

On the tenth of those whirlwind days I was laying on a table getting my body mapped for the radiation treatments that I began two weeks ago. I had already learned there is no other occurrence of tumor visible to any known test. (That is, of course, not to say there is none. There almost certainly is. But, my immune system has kept it in check for a fairly long time and it is not likely anything else is aggressive enough to take me out in the next six months.)

So I have one tumor. And where it is and how to treat it is clear. It will very likely respond to radiation. Better than even chance it will be eradicated by radiation and if not, the palliation will buy me a year or two.

Downsides of the treatment are some chance of paralysis because of the proximity to the spinal cord. That is a small and acceptable risk. Some greater chance of some diminished physical ability -- but, again, tolerable.

Surgery would be "heroic". At this point there is only one rather desperate scenario where I would consider that. Even then it is doubtful.

I have had only two difficult moments in this. One when I first saw the CT scan and the radiologist turned to me with a sad look and said, "Didn't they say anything to you in April?"

The other a week later when I had to tell my support group at the Wellness Community. They were devastated. We've lost five precious people from the group in the last year. We've had one other recurrence and a number of setbacks. We're always alert that someone may be slipping. We live and laugh our way through a constant roller coaster. But, I've never seen the devastation as when I told them of my recurrence. More tears and more hugs than there have ever been in the group. Everyone reached out to find a way to take some of the burden. Always knowing that support does not change the solitary nature of going toe to toe with a tumor.

And this speaks to the reason why I have not been able to post anything here until I knew where I stood, had decided on a course of action, and took the time to craft to words by which I broadcast the news.

After radiation began I set out to examine (in a phrase that Bjorn coined in a private message) the chemo card. Thursday I will have a catheter inserted in my chest and Friday I get admitted to the hospital for two days of chemo followed by two more outpatient days with an infusion pump. This will have some radiosensitizing effect and some systemic value. The process will be repeated monthly three more times.

The chemo was a much more of a decision. Since it stuffs the immune system which I believe has worked hard and well on my behalf. But, just could not control one little piece that the surgeon could not see a18 months ago. But it is a decsion that is behind me and I am relieved at the end of the research and resolved at the beginning of the treatment.

So there it is: the news and the op-ed page. Thanks in advance for all the well wishes, the prayers, and the hugs.

Luv,
Al

PS. In the past many people have written to me after reading the first part of the story. But, I don't want anyone to be hesitate about writing to me now because they think this is a bad time. If it is, I'll tell you and refer your story on to one of my 100 plus pals, supporters, co-victors from the EC group.

The Beast's ambush is foiled: Written March 1998

It seems like a long time since I wrote that PS. It *is* a long time -- a year and a half. A lot of people tuned in here in that time. Many wrote me notes. Some, clearly hesitant that it might not be appropriate, did not know whether to send congrats or condolences.

We never got close to condolences. The treatment was no picnic. But, as assaultive as it was, I always knew this was just temporary. It was the price of teaching the Beast one more lesson. I never felt so bad that I was tempted to just wallow in despair.

If you read this far, you really want to know what the experience was like. For yourself or for someone who really care about. So, I'll tell you without a lot of cosmetic makeover. I probably should have kept a journal. I didn't. The memories are pretty clear.

The radiation feels like nothing at all while its happening. You lay on a table. They go zap for a minute or two. You get up and go on with your day. At least that is the way the first few weeks go. Then I began chemo. The radiodoc had said that the chemo would add some extra sensitizing effect to the radiation. I was actually anxious to get the chemo going.

I chose to be admitted to the hospital for the 4 day chemo treatment. We suspended radiation for the week. My chemo protocol was the standard one for EC. A few hours of cisplatin and four days of 5FU. I was given Kytril to suppress nausea (which was extremely effective) and Licix to make me pee (which also worked). They really don't want to chemo to stay in your body very long. They measure your urine output. By the same token you need to consume a lot of water.

I had been feeling so well prior to chemo that I thought I'd breeze right through it. I did for a day or two. But, food did not interest me and I did not hydrate well enough. I began to feel tired. I lost several pounds and wasn't too worried because I had been able to gain back most of the 30 pounds I'd lost after surgery.

So I was tired. And slept a lot. And felt unmotivated. Not even motivated enough to get up and get something to eat when I was hungry or something to drink when I was thirsty. I'd just sleep more. Later, someone explained that with dehydration you lose your electrolytes and these are the body's neurotransmitters -- the messengers that tell your brain that you are thirsty and the tell your butt to get up and get a drink.

A couple of days after chemo a friend came over to mother me. She cleaned the apartment and did some laundry and tried to get me to eat. I slept. She persuaded me that my sluggishness was cause for alarm. She took me to see my oncodoc . I got on the scale and he noted the twelve pound weight loss (I didn't know *that*) and marched my down to the clinic for a saline IV. I felt much better before the bag was empty.

On the way home I stopped and bought some Gatorade. I was used to sports drinks from my hiking and bicycling activities. I think they go down more easily than water and they have some sugar and some sodium and potassium. To this day I keep a jug around and when I drink a couple of quarts a day I feel better.

I finished up that round of chemo and went back for some more radiation. I was very tired. I tried to exercise a little. But, it seemed like too much. I allowed myself to take it easy. The radiation went OK and I looked ahead to the next round of chemo.

I tried to fatten up a little with some rich foods and tried to get in the habit of drinking a lot of fluids. I was trying to get ahead of the effects that I had experienced in round one.

The second round I did a couple of days in hospital and a couple of days wearing a little portable pump. The pump was not much bigger that a CD player, unobtrusive and not at all limiting.

This time I had mouth sores.

Every chemo has a large number of possible side effects. My observation is that everyone gets a couple of them. The docs don't tell you much about them because they don't know which one you will get. Everyone asks about losing their hair. Everyone shops for wigs or considers getting shaved. Nothing much happened to my hair.

But those mouth sores were a bitch. They lasted about ten days. They were painful. I survived. I knew there would be some price to pay.

The fatigue got worse. It was a very good day that I only slept ten hours. Twelve to fourteen was getting to be normal.

So I was a lot less cocky about the next set of treatments. I think I had another ten radiation treatment and the doc decided to give me a few weeks off so that I would not have to deal with such a double whammy. Possibly because it was around Thanksgiving and I wanted a chance to enjoy some food. It kind of worked. No mouth sores. I wasn't any more tired than I had been.

Then I got the hemorrhoids. Never before. Now I knew what they were. Several days of discomfort over the weekend. I had some passive advice from my GI guy that if they persisted over the weekend I should see someone who could do an outpatient procedure in his office. I got to him first thing Monday morning. He did some cutting. Nothing fun about that. But a couple of days late the relief was measurable.

I think we stalled on the next round of chemo until after Christmas. My doc was going away and I didn't mind downshifting a bit.

A some point in here I had an xray of the site and the tumor had shrunk about 40%. That was great. Real reason for optimism. I guess I finished the rad in December and had the last round of chemo in January of 1997. I was pretty wasted. I wasn't an invalid; but, real low energy. I felt OK for 4-5 hours a day. The rest of the time I was pretty sedentary.

One of the characteristics of the energy is that when it ran out, it was like walking off a cliff. Especially if I had been exerting myself. I was doing OK -- able to do routine things. And then I'd feel myself getting heavy in the limbs. Over the next 15-20 minutes I just drained. I'd lay down as soon as I felt it coming on. I'd sleep for two hours. If I was away from home, I'd stop whatever I was doing and headed for home. If I was more than 20 minutes from home, the last minutes were pure will power.

Once treatment was finished the low energy levels continued for a few more weeks and I got steadily better over the next couple of months or so. I did push myself -- testing the energy limits. I didn't get all the way back. But, it feels like 97%.

There are a couple of more things to know about rad/chem. When you have finished the treatment, the positive effects still go on: the residual effects lasts another six weeks or so. Point being that you don't get to say to your doc right after treatment, "Let's get a scan and see how well we did." That comes six weeks later. Your docs may forget to tell you about the six week wait.

The other thing is that more than any other time when you are doing rad/chemo you feel like you are engaging the Beast. You feel like you are fighting back. You feel like you are not laying down and waiting for the dice to roll. You are in the game. And for me it was the perfect time to enlist some of the psychological and spiritual tools.

Specifically, I did visualizations during the minutes I lay on the radiation table. I visualized the rays attacking the tumor and peeling layers off the big mass of jelly. The cells turned to dust and my immune system swept up the dust and expelled it. I actually paced the visualization over the 35 treatments and it included the rebuilding of the bone loss after the tumor had been destroyed. I didn't quite time it right. The rebuilding process finished a couple of days too soon so I had to add a couple of extra protective layers to the repaired vertebral body.

You may find this psychological stuff hard to swallow. That's OK. I believe that it can't hurt. It was one more way I engaged the Beast and who knows which treatment worked or how they combined to work.

What I do know is that my docs looked at the pictures six weeks later and said, "I think we killed it."

The really good news is that I'm writing this story a year later.

Throughout 1997 I got better. Just like after surgery. I've had my tux on three times for some formal balls and danced my legs off until 2 am. I've logged a couple of metric centuries (63 miles) on my bicycle. I played. I worked. I traveled. I appreciated. All with more awareness than ever before.

I collected my Three Year Victor pin a month ago. I've watched the EC group grow from that 100 pals that rooted with me to 475 today. I know two dozen people who are further down the road to victory than I am. So I know it can be done. I've heard there are a few docs that say a diagnosis of stage 3 EC is a death sentence. I'm sure glad none of *my* docs thought that way.

Now, I know you did not read this story because there was nothing on TV. You strolled into this Cafe because you or someone important to you has EC. And probably you just found out. You are probably pretty happy to find a three year victor especially if you just talked with one of those Dr Doom guys. Maybe you'd like to tell me your story and ask me what you should do.

You are welcome to drop me a note. There is a link to me email box below. The advice I will give you is to join the EC group listserve. (It is free) And the instructions to get on that mailing list [are here].

In that group there is a ten year victor. It is run my volunteers who are not doctors. But, whose collective experience is huge. So, if you want to tell your story, wait until you can tell it to hundreds of caring people.

Al (still loves you)
May 30, 1998

A postcard from AL: Written October 2002

Life is busy. Life is full. Life is rich. Life is sweet. So this long overdue update will be brief. The truth is the news is noteworthy only by its absence of grim medical reports.

After five and a half years of clean scans, I am officially deemed cured of EC according the guidelines of the National Cancer Institute. The events of April 1995 were an hourly thought in my mind for so many years, a thought that faded slowly. Sometime in the last couple of years I realized that I no longer thought about the presence of microscopic clusters of EC cells in my body. I began to embrace the notion that I was a cancer victor rather than a cancer patient. I never did think of myself as a cancer victim.

Today, a couple of months shy of my 66th birthday, my body is as strong and hard as it has ever been. In March of this year, about a month before the five year anniversary of the first clean can after tx for the recurrence, I realized this wonderful anniversary was nigh. And, in some strange sort of way I wanted to pay homage to my body for its victory -- and one last time -- Flick the Bird to the Beast. I dusted off my bicycle little used during '01 and began to ride several times a week. It was almost compulsive. Seven months later the victory lap is over 2000 miles long and growing.

The EC Group continues to thrive and grow. Over 1100 members currently avail themselves of the daily publication of information and support of veterans and victors, of friends and fellow travelers. Over 4000 thousand have visited since Christmas Eve of '95 when I first invited a half dozen lonesome EC cowboys to exchange thoughts with each other via the 'net.

I am not so visible in the daily postings as I was in the early years. So many wonderful people have taken up the challenge of posting wonderfully caring, knowledgeable and thoughtful responses. I still get personal email, phone calls and referrals from several sources and take pleasure in the personal one on one contact.

I have learned that people who join the EC group have a longevity substantially greater than the statistical average. That is not just a statistical anomaly. People who are pro-active in the defense of their health do better. They have encouraging family and friends. Their physicians are impressed with their knowledge and determination and pay closer attention. They live their lives more richly even as they endure the assault of treatment. Rather than be debilitated by it, they take energy from their fight with the Beast. Fighters live longer and they live their lives more richly as they fight.

And those who begin sharing the story of their victories -- even the tiny milestones on the path to victory -- do even better. When I was dx, the average longevity was 19 months. What would you say the odds would be of three random people diagnosed within a month of each other would beat the 19 month average? What are the odds that they beat it by double? By triple?

Over 100 months ago in the Spring of 1995 a retired air force colonel in Texas, a young grandfather software engineer in Wisconsin, and professional pleasure boater in the San Francisco Bay area were dx with EC. Rather advanced EC at that -- all stage threes. Between them there were a couple of dozen hot lymph nodes. They came together to become the nucleus of the EC Group. And George Thompson, Marc Wolfgram and myself are all around today.

A miracle? Three miracles? Coincidence? Luck? Who cares? But, I have come to believe that positive attitudes heal. And mentoring stokes the immune system.

Life is busy. Life is full. Life is rich. Life is sweet.

And, I am grateful.

Al
October 10, 2002.

Double victory lap: Written April 2005

Ten years ago day I had surgery. The last celebration date was February of '02 — the fifth anniversary of the successful tx for the recurrence. I celebrated quietly. I don't really recall what I did but I knew I was entitled to a victory lap. Today seems like a good day for another.

I congratulate Marc and George for their successful ten year journeys. I pay homage to the two dozen heroes who were awarded their ten year pins before I did and who are well along adding chevrons to their sleeve.

I don't know that I have a lot to report besides that I am alive and well, hale and hearty, past being giddy with gratitude. And on to feeling entitled to my energetic existence.

I have no wish to detail the adventures, the laughs and loves of the last ten years. But, they have been the best ten years ever. Maybe every little cameo experience was a little sweeter because I cheated the Beast. Although I already knew how to wring an extra measure of joy and pleasure out of every step of the dance. Maybe just because the odometer clicked over into my sixties and everything works as well as it did ten or fifteen years ago.

If had not out wrestled the Beast ten years ago and had known what I was going to miss, I'd have been really upset. But, I did. And, I didn't. And, I am not. But, I do pause to send you this postcard and note my gratitude for the last ten years. A short pause. Because I am busy savoring what to do with the next ten. See ya.

Al
April 19, 2005

Things I've read which have been helpful are...

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