Les Coleman's EC Diary

Background

Over Memorial Day Weekend 2003 and the following weekend, a series of "upset stomachs" gave me some problems. Since Carolee and I were departing on a trip to Russia, I wanted to ensure I didn't have problems in rural Russia. I couldn't make an appointment with my regular gastroenterologist, Dr. Pamela Connors while she was on maternity leave until October. The first appointment I could get with her partner Dr. Bradford Lavigne was in late July. I went to my PCP and internist Dr. Walter Lentz to get a prescription to handle the symptoms of an ulcer while I was away. I was given a Prevacid which combines a strong acid blocker and medicine to kill H-pylori. Throughout the trip to Russia, in spite of jet lag and odd foods, I had no digestive upset. All went very well.

Occasionally I will make an aside about the conclusion of something which happened later than the date noted. It will be in this red color.

July 27 Upon my return to the USA, no problems occurred. I began to think that my appointment would make me look like a prize hypochondriac. On the evening before I was scheduled to see Dr. Lavigne, suddenly I had a sharp attack around 6 PM.

July 28 (2003) I had my appointment with Dr. Bradford Lavigne for the odd sensation in my stomach which I suspected might be an ulcer forming. Dr. Lavigne asked if I had trouble swallowing, had nausea or changes in my bowel movements [no to all]. Dr. Lavigne wished to examine me with an endoscope as soon as possible. He also wanted some blood work as soon as possible. I remarked to the phlebotomist that 5 large test tubes of blood seemed unusual. She said that I was having tests for white and red blood cell counts, liver function, blood consistency and density, standard block testing and perhaps other tests which I could not remember. I thought this was a bit much for a stomach problem but I figured Dr. Lavigne was just being thorough.

July 29 I had endoscopy at Westerly Hospital. Upon awakening Dr. Lavigne told Carolee and I that he had found a cancer in my esophagus. He has taken 8 biopsies. In retrospect, we should have known something serious was occurring when Dr. Lavigne wanted us in at 6 AM after the first appointment but the diagnosis of cancer was totally unexpected. The blood work including liver function and counts of white and red blood cells should also have tipped me off, but I simply did not make the association.

The remainder of today and the next day were passed in a complete funk. As I went online to find out more about EC, I went from dreadfully upset to almost paralysis. 95% mortality within 18 months is not a diagnosis anyone wants to hear. What I did not know then and was not to find out for sometime was that I had a 50/50% chance of being in the lucky 5%. In reality, the numbers are something like 90% of the EC suffers have no chance at long term survival, and about 10% have a realistic 50/50% chance of long term survival. The stage is very critical. Stage 0, cancer "in situ" (a unattached self contained cancer) at 75%, Stage 1 - cancer contained in innermost two tubes of the esophagus 50% all the way down to Stage IV - remote metastasis is less than 1%.

July 24 Somewhere during these two days, an aspect of my personalty arose that I had never suspected. A no nonsense fiercely focused hardened core took over ever time I needed to make a grim decision or I began to panic. When Tim visited me a few days later he said that he knew how frightened I must be, and I was startled to hear myself say in all truth that I wasn't frightened at all. I felt angry and vengeance at the disease, concern and grief that I might leave Carolee a widow, but I had absolutely no personal fear. When I needed to do hard things or understand hard choices, a hardened and resolved core was there buffering my kinder gentler selves from the grim realities. All the harden core cared about was percentages, best outcomes and what we had to do to make sure I gave myself the best possible chance. The hardened core made sure that I picked up my physical activity, swimming longer and faster. Over the weeks to follow, while I suffered periodic depression at the nastiness of what was happening, and in particular each setback be it dumping, weight loss or weakness, I never was fearful.

July 29 At 1:30, Carolee, Kevin, Mary and I met with Dr. Lavigne when the pathology report was back. He showed us the endoscopic picture of cancer.

The situation is that the tumor is in its early stages. The cells look like the cells of the esophagus rather than the wildly undifferentiated cells of a late stage tumor. There are no signs of spreading. The liver shows neither signs of penetration in the CT Scan. This is confirmed by a positive liver function blood test. Lymph nodes in the area do not appear to be enlarged, but it is not possible from a CT Scan alone to determine if they harbor breakaway tumor cells yet.

There are various ways to specify the staging of a tumor. It can be done from visual examination, from a biopsy, from CT and PET Scans, from ultrasound endoscopy but the definitive staging can only be determined after surgical removal of the effected area and pathology of the diseased tissue. Dr. Lavigne has arranged a meeting with Dr. Robert Knisley, who is now my medical oncologist. Dr. Lavigne is essentially turning over management to Dr. Knisley at this point. The tumor is about the size of my thumb pointing down to my stomach. They have been confirmed as a moderately well defined adinocarcinoma (pathology by Dr. Paul Cardi at Westerly Hospital confirmed by Dr. Robert Odze at Brigham & Women's Hospital in Boston on August 4th). The tumor has not wrapped around the esophagus; it does not look aggressive; it is moderately well differentiated; and does not show discoloration. All of these are positive signs. It tentatively identified the tumor as an adenocarcinoma of the Barrett's Esophagus (which has proved to be a correct diagnosis).

August 1 I've had CT Scan and X-rays at Westerly Hospital today. My lab work tested a wide variety of things including liver function. The CT Scan dye burned when it was pumped in my arm. Over the next few days, I developed a bumpy rash (hives?) which various doctors confirmed was an allergy to the dye. The tests at Westerly Hospital did not reveal any additional nodes of cancer.

August 5 Carolee and I had our first meeting with Dr. Knisley. Dr. Knisley and his partner Dr. Robert Lagare strongly feel I should go out of state for surgery. He suggested that Memorial Sloan-Kettering and Massachusetts General Hospital [MGH] have fine programs. [Dr. Knisley discussed possible surgeons and he and Dr. Lagare suggested Dr. Henning Gaissert. With Kevin's help we discovered that Dr. Gaissert is indeed a fine EC surgeon.]

August 11 Carolee and I had our first meeting with Dr. Gaissert. It is very important to have confidence in your surgeon. What he does has life altering changes on your body. Not only does a doctor hold your life in his hands, his ability to communicate with you can foster or inhibit the vital flow of information. We are favorably impressed with Dr. Gaissert. I felt very comfortable with him as did Carolee. Dr. Gaissert will be on leave until early September but I am already scheduled for surgery on September 5th (Friday).

We were amazed how sensitive a huge hospital like MGH can be with severely ill patients such as myself. I later came to realize that MGH is more a collection of little intimate "villages" each focusing on a particular area. The whole is bound together by an "state government" where a single village just isn't enough. Some villages serve other villages (the shopping area, restaurants, and administration), other villages treat a condition (maternity or a kind of cancer) and still other villages deal with common needs (X-ray, physiotherapy etc.). I never dealt with MGH as a whole but just those folks with a special interest in my disease. It seemed that everyone knew who I was and what I needed. Communication was great and unobtrusive.

Dr. Gaissert's physician's aide Andrea (last name?) discussed the details of the surgery with us. I will have a Jejunum Tube (J-tube) inserted in lower left side for feeding ("chocolate milk shake on a pole" [yah right and hamburger is porterhouse steak]). I will awake with multiple tubes, in bladder, nose, back (epidural drip), a drain in my lower neck, various ports in my arms, possibly a vein tube leading to my heart (never had it) and a mouth tube (taken out before I awoke). There will be many feeding machines, monitors. I can expect to take a barium swallow on the 7th day if all goes very well, and physical therapy will begin on the 2nd or 3rd day (I forced the issue by starting to walk immediately after sitting up on day 1). I will have chest X-rays every day (initially via portable unit, then by going down to the 2nd floor. I will start on a series of diets starting with liquids and finally going to anything goes 4-5 weeks later. If J-tube falls out I have to get it inserted immediately - preferably at Westerly Hospital Emergency Room (never a problem). J-tube may be left in for chemotherapy and radiation. Andrea is on the floor of Ellison 19 (my home away from home).

August 12 Dr. Knisley called to see how things went with MGH. We said they went very well and that we were very favorably impressed with Dr. Gaissert.

August 25 My 9 AM PET [Positron Emission Tomography ] Scan began in the MGH White Building's Nuclear Medicine on Floor 2. At 9:25 I was given some radioactive glucose. Just prior to the injection, they drew blood through the same port. My blood sugar level prior to injection and after a 17 hour fast was 85 where 80-120 is ideal. The actual PET Scanning began at 10:30 in a trailer when MGH houses its second PET Scanner. The technician Lesley Lenher. It was uneventful except that my arms (held above my head due to the very narrow PET Scanner opening) grew painfully cramped. The whole session took about an hour. The PET Scan showed no remote metastatic nodes.

Carolee and I then went up to the GI Specialists in MGH Blake Floor 4. We had a bit of confusion about when it was scheduled. We thought that it was for 1 PM with a 12 Noon check-in. In fact it was 2 & 1 PM. I had a complete medical history taken by a nurse [Judy?]. She hooked me up to blood pressure, heart & pulmonary monitors, started me on an IV. About 3 PM I was wheeled into the procedure room. An unknown resident asked me my entire history again, checked that I knew what the procedure was for and tried to explain ultrasound to me. [I understand ultrasound at least as well as he explained it but he was doing his job.] My actual ultrasonic endoscope was conducted by Dr. Brenna Bounds who I met just prior to sedation. Dr. Bounds has tentatively suggested a single tumor (possibly 2) with no nodes involved.

September 2 In a phone conversation with Dr. Gaissert, we confirm that surgery is on for Friday. I am very anxious to get started.

September 3 We arrived at Boston two days early so that I can take the much dreaded Golitely. This will be my last real meal perhaps forever, because of limits on how much I can eat. My outlook about eating normally proved to be much too pessimistic. A year later I was fine. They gave me a full dose of Golitely with strong antibiotics. With my tendency to diarrhea, this was massive overkill.

September 4 A series of tests were scheduled today on an outpatient basis. I did not find out until later that these were crucial tests. Failing anyone of them meant that surgery was off. Blood work (many vials) were taken at 12 Noon. I moved to the Pulmonary Testing Unit [MGH Bigelow Room 952] at 1 PM with technician Barry Callahan. I was told that I had to have spare capacity if surgery went awry. I was asked to blow hard into an initial machine before the more serious test began. After looking at this test Barry said the rest of the tests would be pro-forma. I did tests in hyperbaric chambers, lung capacity tests, pressure test and what Barry said would be the worst - the treadmill. Actually as I waited for the treadmill to come up to speed, Barry announced everything was done. I normally run the treadmill twice as fast at the YMCA and didn't understand that I had already passed. By 2 PM I was in for an EKG and a discussion of how the blood tests went (fine including the crucial liver tests for cancer spread).

We moved to the Grey Building's Admitting area where things began by checking insurance and signing lots of waivers saying MGH could share what they learned with people involved in my treatment. I had a nurse interview with Hilda Morrison who explained all the support services. I learned I would have to arrive at the hospital by 5:30 AM. I was told not to bring anything at all. Hilda explained many support features available at MGH if I needed them. She was exceedingly kind and gentle.

My final interview was with Anesthesiologist Dr. Annetta Murphy. She explained that two types of anesthesiology would be used - general (by mouth and via a port in my hand) and epidural (via a tube in my back). Dr. Murphy repeated all the tubes that I might encounter. She explained the common side effects and explained that while very rare, epidural sometimes caused paralysis. She stressed that long surgeries like mine were stressful to the body and that I would probably not be moved from the ICU to acute care (Ellison 19) for a minimum of 24 hours (I actually was ready to be moved 8 hours later but they held off until morning).

Tim came the evening before surgery and met us in the room. We planned to meet early to go over for the early admissions.

September 5 Carolee, Tim and I arrived at the admitting area in Wang by 5:30 AM in the Same Day Surgical Admission area. I was scheduled for the very first access to the surgical area (a blessing not to be hung up waiting for one to free up). It wasn't long until I was admitted and shortly afterwards I was on a gurney in a hospital dickey wrapped up in some warmed blankets. [MGH keeps preheated blankets in warming cabinets for patients who are chilly - bless whoever thought this one up.] I moved down to surgical ward 8 and was in an alcove while the room was set up. I met for the first time a head resident (?) Dr. James Cacciatola who prepped me for the surgery and started the anesthesia.

From here until the evening I have no recollection. Surgery was rapid and without complications. Within 5-1/2 hours Dr. Gaissert told Carolee and the others that all was well. It was sometime in the evening until I awoke enough to know my family was close but I still was very groggy and cannot say much of what happened. Visual examination indicated the cancer had not spread at all but pathology (several days later) discovered a few escaped cells in one out of thirty nodes.

The following are Carolee's notes about the day:

"Surgery began at 8:15. We had updates from rotating nurses Gloria and Katy who said that Les' surgery was going well and that Les was stable. We met with Dr. Gaissert at 1:45 who said that everything went according to plan. There was no [visible] evidence of spread. They took nearby lymph nodes for a biopsy whose results are due in 6 to 7 days. Les is still groggy, in some pain, is connected to lots of tubes and looks good considering.

"We visited Les in the ICU at 6:45. He was more alert and in more pain. When a nurse told him to take a few deep breaths, it was very painful for him. The nurse removed the oxygen mask briefly to make talking easier but soon had to put it back on. Les wanted to know exactly where he was.

September 6 In the early morning hours I finally really awoke. I was asked how painful things were for me. I said that I knew what real pain was having passed a 5 mm "arrowhead" kidney stone. (It doubled me up with pain in spite of a heavy dose of morphine.) Using that as a 10 I said I was hurting no worse than a 3. Medication was given and pain dropped back to background and never got as bad the rest of the day. I was told that after breakfast I would be moved to Ellison 19. Time dragged incredibly slowly. I was about the only patient in the ICU, at least at the far end where I was. Others had left the evening before. I heard a Code Blue come over the loudspeaker down in "Eat Street" the MGH main cafeteria but other than that everything was very slow.

At 6:30 AM, a man came down with a portable X-ray machine and slid a film under my back. I felt like a leaden blanket, unable to do much more than grunt. The X-ray technician was upset that the film was bad until it was explained by a nurse that "No, it isn't bad, his stomach really is under his collarbone now." I could feel my legs but my body from my diaphragm to my groin was totally numb.

Somewhere around 7 Carolee and Kevin were admitted. I told them I was scheduled to go up to Ellison 19 earlier rather than later. When we finally got to Ellison 19, I was placed initially on the inner bed. The view from the far bed was spectacular. My first roommate was going home after having almost identical surgery. We asked for and got the window bed when he left. What an incredible view of Harvard, MIT, the Charles River, and the Esplanade. Outside I would watch the traffic on Storrow Drive, or the crew rowers and scullers zipping under one bridge or another. I could see the Red Line Trains going across the bridge below, watch softball teams, cyclists and runners on the path and had a wonderful view day and night

September 7-12 Ellison 19th floor is also known as by everyone as Thoracic Park . It comes complete with island map and dinosaurs (various nurses and physiotherapists). Serious thoracic patents are collected in this acute care facility. The nature of acute care starts with a patient very much unable to do more than press a button to ask for help and if all goes well, it ends with someone well enough to manage for himself. Each day began with an early chest X-ray once I could stand. I wore elastic sox designed to help people with phlebitis. An automatic pump massaged my lower legs with inflatable leggings to prevent clots. I learned far more about heart and pulmonary monitors than I ever wanted learn. "Smoke (black wire) above fire (red wire) far from the snow (white wire on right side)". I became a fairly pleasant patient and I found that I was being used as "a live crash dummy" by nursing students (under the closest care of a supervising nurse). I actually looked forward to chatting with the nursing students and wishing them well in their studies.

Mornings began with a very early visit by Dr. Gaissert. Carolee was amazed how early (by 6 AM) she had to come to meet him. Having him there to discuss the latest results did a huge amount to bolster my confidence that I was indeed mending very well. Shortly after he came, Dr. Cacciatola would arrive with first year residents in tow. He was always asking probing questions to make sure that I was comfortable, and about each and every feeling or symptom. Later pain specialists made sure I was in no pain. [I had low level pain sometimes, but almost nothing like I expected] .

Most people got breakfast next but I had an NBM (nothing by mouth) sign on my chart until the fifth day. Physical therapy came next, and this was the territory of my grim hard core to push myself. Actually, I had the nurses and physiotherapists upset - I was too aggressive. Usually they have troubles getting someone to do anything. I was supposed to sit up the first day, but I got myself up and started marching down the corridor (too fast). Finally I was told that exercise was great but busting a gut [a very real possibility] was moronic. I slowed down a bit but made the walks longer. I learned a lot. I made rapid progress. I wasn't to learn until weeks later that I was burning up the physical fitness that I had built into my body over many years at the YMCA pool and exercise rooms. Eventually the spare stamina ran out and it was a few weeks before a compromise could be forged between the body (I'm really hurting and exhausted.) and necessity (So what? Move it, now!) Once I was chemotherapy and radiation I wish I had used up less earlier. I exhausted my reserves too soon. Later when starvation was a problem, the reserves were gone.

My first bed was literally falling apart. One night several parts fell off next to the controls including the side rail. A guy from maintenance said the "bed could short out" and begin to move up and down on its own. In fact he was wrong the bed's controls are pneumatic and are failed safe. But to a heavily sedated patient, it seemed plausible. I sat up much of the night in a chair and was exhausted by the time Carolee came in. Carolee raised the roof and pretty soon, the "broken bed incident" got escalated more than it was worth. I am grateful to the MGH social councilor who listened to my tale. In hind sight, this is the one item where my sensible hard core didn't emerge when perhaps it should have. Too much happened and I was finally unable to maintain composure.

Aside from the bed, the only complaint I had was eating. Most of the time I was fed simply by machine. For some reason, my extremely simple meals (colored flavored ices, clear fruit juice or broth) seemed beyond the MGH kitchen's ability to produce. I sometimes got breakfast as late as the afternoon and supper as late as 9:30 when everyone else got meals on time. Since I looked forward to eating with my visitors (they bringing up a tray), it was really a bummer. Worse yet, I needed practice eating because my swallowing is anything but automatic.

I could measure my progress by the tubes, wires, monitors, pumps and various prosthetic devices that were removed. Early removals were the direct blood pressure monitor (in a vein), then several heart medications (preventing arythymias) were dropped, the epidural tubes came next to be replaced by a pump that allowed me to self medicate pain relievers. Eventually the dreaded nose tube came out and I stopped sounding like Donald Duck. I was allowed to move about without having the heart and lung monitors attached (although they were back on when I was in bed). The drain in my neck stayed until the end. It was very annoying because it wouldn't stay put.

As a slightly amusing anecdote, one morning near the end I knew that I was scheduled to have a variety of tubes and wires removed. As always critical patients come first and while the nurses were always caring and helpful, I was the healthiest critter they had so I came last when there was a conflict. I finally decided to removed some of the intravenous tubes, tape, and electrical connectors from my body. Dr. Gaissert came in and asked what I was doing. I gave him a grin and said "I'm making a break for it Doc. Give me a head start of 15 feet past the nursing station and they will never catch me." He grinned back and said "I'll help you with a disguise. They'll never recognize you without that tube in your nose. Stand up and take it like a man!" He whipped the nose tube and its tape in one single deft motion and I was ready to make my break.

I was off oxygen for a while but had to go back on it after I had a problem during my "barium swallow" on the 6th day. I aspirated about 30 cc of some testing liquid into my left lung while on the fluoroscope. I surprised the radiologists examining me when I simply cleared my lungs using the "breathing and coughing" exercises I had been taught. I calmly asked for more fluid and continued. Back in Thoracic Park, the male nurses took turns pummeling my back until everything had cleared. They used oxygen and a kind of a vaporizer to loosen my lungs. A de-aspirator tube was used to clear mucus and phlegm where I couldn't clear it by myself. In spite of my near disaster (I could have been Code Blue and in Emergency easily) I managed to pass the test handily.

Carolee stayed at Beacon Hill House most nights while I was ill. On the last night Kevin and Carolee stayed at the same hotel to avoid problems with suitcases and bags.

On the day before I left I had a series of consultations at MGH with Dr. Jeremy Abramson (radiation) assisted by his resident Dr. Ronald Chen and Dr. Panos Fidias (chemotherapy). They offered to help either by setting up a treatment at MGH or working with Rhode Island doctors if I felt like going that way.

They described the tumor in more detail than I had seen before. The tumor had not managed to even invade the outer wall of the esophagus being constrained mainly to the mucous layer and adjoining the muscle. One node was found to have microscopic traces of carcinoma. So immediately I went from being T1N0M0 (pure Stage 1) to T1N1M0 (early Stage IIb) . No cancer has been found at either the upper end of the esophagus nor anywhere in the removed portion of the stomach. This has been confirmed by pathology under the microscope. Dr. Gaissert could not detect any spread of cancer to the nodes visually, but only pathology can really tell. After surgery I am assumed to be T1N1M0 (requiring chemo and radiation for a cure). I may be T0N0M0 (ie free of cancer) but we can't assume this.

September 13 Going home! In spite of savage bruises on my arms after a week of heparin injections, various intravenous injections, numerous blood test and allergic reactions to adhesive tape, I feel elated.

My brother Dennis brought his Suburban up from Old Lyme CT to MGH to cart me, my stuff, and the three of us (Kevin, Carolee and myself) to Westerly. I was up early and the very last of the drains was removed. I had the first true shower since the beginning. With the exception of the J-tube, I was free of tape and tubes at last. I dressed in real clothes and by the time Dennis arrived I looked more than half human. I felt great but I was to learn how little real stamina I had by late afternoon.

I was told to cut the two hour trip into two sections. I was no longer receiving heparin intra muscular shots every six hours and blood clots might yet form, so I had to walk around every hour of the trip. Dennis stopped, somewhere in darkest Woonsocket. I strode off toward a sign in the road, and three quarters of the way there the last of my reserves suddenly began to give way. I made it back to the Chevy but I was exhausted. I remember little of the remainder of the trip. At home, I focused on climbing the stairs and I fell into the guest room bed and was asleep within minutes. I was vaguely aware that something had been left in the Chevy, and that Dennis came back to deliver it, but I didn't really come to until evening. I was so disappointed with my performance but I have come to realize that stamina is no longer my middle name.

September 14 Carolee and Kevin went out and bought all sorts of sick room and soft foods for me. I have a sitty-downy ring (my posterior maximus is at best a posterior minimus now). A bed wedge allows me to sleep at a safe 30 degree angle (to avoid midnight saliva gagging). For a while the guest room will be my bedroom. A nurse, Holli Simmons, from the Coram Corporation brought a pump, Jevity, an elevated pole and explained how to feed myself by machine. It is basically the same setup as the hospital except that it is battery powered for up to 10 hours if need be. Since I am not on continuous feed, for the most part I simply wait until I can disconnect before doing much more than moving about the guest room, kitchen and bathroom.

September 15 to October 1 Each day is much like the prior. Dr. Gaissert is weaning me from the feeding tube. I started at 2000 calories every third day with 1750 every two out three days. After 5 days, I dropped to 1000 calories. A week later I was down to 750 calories for four days then 500 calories a day for four days before stopping altogether in October.

I have telephone consultations at least every with Dr. Gaissert in which he slowly allows me to do more and more. I am able to do more and more for myself. During this time I returned to the YMCA and actually was able to do dome aerobic cycling, treadmills and (light) weight machines. The showers at the YMCA are much better than at home. Guys at the YMCA are encouraging and say I look very well. As chemo and radiation hit and worst off all dumping/diarrhea hit, I began to lose this appearance of wellness. Eventually even trips to the YMCA became rare until six weeks after treatments.

My downstairs guest room bedroom is practical but I do feel like I am in Coventry. I can get up from the bed at night and wheel the food pump tube into the bathroom. However I really want to snuggle up to Carolee especially when the temperature drops. Sleeping on my back is getting better but I still wish I could turn over on my side for at least a few minutes. However this would mean tangling my food pump tubes and lying on the J-tube valve. When the J-tube was removed and after my abdominal muscles healed, I once again could sleep on my side.

One of the really annoying problems is my J-tube. It pokes me and leaves painful red areas. Trying to attach it without discomfort is impossible. While I try to "pad" my tummy from the knobs on the end of the tube, it really isn't successful. I am very sensitive to adhesive tape. Leaving it in one area causes big red welts. When I shower, I must change everything. I need to take medicines and food by the J-tube, and everything has to be cleaned over and over again.

The end of the J-tube ends in a dingus called a Lopez valve. It is both a very sensible idea and a a dumb idea rolled into one. It allows multiple uses of the J-tube without replugging (sensible), but it just won't stay in place and has sharp corners which gouge me (dumb). It must be taped away from the body, but adhesive tape simply isn't strong enough. Finally Carolee suggested that perhaps MoleSkin would work. It does, but I have to tape it over gauze to avoids welts. I actually got so annoyed that I wrote to the company which produces the Lopez valve and suggested then come up with a Lopez Valve case which would allow the unit to have no poking knobs and would attach via an elastic belt rather than adhesive tape.

Hooking up to the food pump at night isn't too much of a hassle. It starts with me flushing the J-tube with 60-100 milliliters of spring water. I don't require sterility but I must have cleanliness. Medicines and vitamins are ground up, dissolved and injected through the medication port on the Lopez valve. More water is flushed in and then I pour cans of Jevity (which smells like baby colic) into a fresh feeding bag. I hook the bag onto the machine pole, pre pump the air out of the tubes, insert the pentagonal pumping wedge into the machine, connect the thin feeding funnel into the Lopez valve. If I do everything right, I then turn on the Lopez valve, the pump and away I go. If I goof, either the pump begins to beep or worse yet if I forget to open all the valves and doohickies in the right order, gooey Jevity squirts onto my clothes.

I optionally take pain killers. I am weaning myself from the strongest (OxyCodone) to the mildest (Advil). I am actually afraid of OxyCodone (a drug of which OxyContin is a form). My IQ drops when I take it and I simply don't consider things that turn out to be dangerous. For example Carolee was rightfully terrified when she discovered I was moving cases of Jevity food when 5 pounds was my maximal safe weight lifting limit. A step down in power, and somewhat less stupefying, is Codeine Phosphate. After the very beginning, I found that Codeine was the maximum power I needed. I tried to get off this stuff too soon, but I only had to go back once in a while. Advil works quite well and has no problems of me acting stupid. By the end of September I was off all these drugs permanently.

October 2 Carolee and I got lost trying to find Rhode Island Hospital [RIH]. She found driving in Providence nerve wracking. Hopefully I will be able to do most if not all the remaining driving.

We made our first visit with Dr. DiPetrillo, who has come well recommended by both Dr. Knisley and Dr. Gaissert. I was frankly skeptical of what use radiation would be in a case like mine, and not at all happy with the idea of radiation near a very tender anastimosis (joining of unlike tissues) in my throat. Dr. DiPetrillo explained that there were two tubular columns that were on either side of the spine that used to run along the esophagus. These contain the lymph nodes that were most likely to harbor any escaped cancer cells.

Radiation is going to be a bitch. I am having considerable problems eating currently. I vomit and gag with almost no provocation. I get diarrhea at the drop of a hat. I still can't eat more than 1500 calories or so on a normal day. Yet much as I don't want to do it, the doctors have convinced me that my best interest are to radiate. So I will.

October 6 We had a follow up session with Dr. Knisley. He had not received the surgical, pathology or consultation reports yet, after his vacation. [A day later he called to say they had unearthed themselves from someone's desk.] Dr. Knisley remarked how well I looked exactly a month after surgery. I am still not sure exactly what type of chemotherapy if any I will undergo. I discussed the drawbacks of some drugs like Cisplaten (hearing loss).

October 9 We made a trip to Boston MGH to have the first of our follow up visits with Dr. Gaissert. Carolee was nonplused to discover the train station closed to ticket buyers earlier in the week, but we got them the day before.

Our first trip was to Wang Outpatient X-ray. I carried the photos to my meeting with Dr. Gaissert who removed the J-tube much to my relief. He made sure that I understood that having to reinsert one later would involve considerable extra difficulty. If the problem is only for a few days near the end of radiation and/or chemotherapy, I do not see worrying about it. [This turned out to be much too optimistic.] If I really need massive food by tube for many days, then an operation to install another tube will be the least of my problems. I have been given permission to eat anything, to exercise (except for sit-ups and crunches for another month) and to generally administer my own recovery. We discussed the problem I am having with my throat constricting, vomiting and generally having eating problems. Dr. Gaissert still feels that with time these problems will recede.

We had a long wait (most of it at South Station) for a train home. It was exhausting.

October 15 Carolee and I drive to RIH for the preparation for the start of radiation on Monday. I was taken to a CT Scan room and told that basically two things would happen - a form fitting "pillow" of semi-hard foam would be made of my head, shoulders and arms (held above my head) and that I would be tattooed (three small dots) on my chest and under my arms. It was relatively quick and except for an uncomfortable tugging at the bottom of my rib cage quite painless. It took perhaps 15 minutes, most of it flat on my back and unable to move except to breath.

October 16 I had a session (private lesson) with Carolee's Yoga teacher - Anita. The purpose of this in my mind was three fold: improve my breathing and pain control, retain and if possible improve range of motion and if it is the case find a way to lie flat on my back with my arms above my head without strange tugging pain at the bottom of my ribcage.

In the afternoon (2:15) Carolee and I had a session with Dr. Knisley. It started as with all such session with the weekly blood test (good). Dr. Knisley is getting a bit concerned about the weight loss. It isn't that 178 pounds is so bad but that I still have potentially the worst weight loss ahead of me. Dr. Knisley introduced me to Dr. Lagare his partner. Doctors Gaissert, DiPetrillo, Knisley and Lagare have been discussing chemotherapy for me. They have taken my concerns about Cisplatin and Carboplatin (additional crucial hearing loss) to heart. My chemotherapy will be 5FU (Fluorouricil) carried by Leucovorin. I will get two hours of Leucovorin and during this time I will get 450 units of 5FU.

We were introduced to the nurse Angela who runs the center where the actual chemicals are delivered. We also met Dawn who is my phlebotamist. She gave me some samples of Boost. Some sort of caloric supplement will be part of my life from now to the end of chemo (at least). I will go every Tuesday at 9-11. Chemotherapy will last at least as long as radiation and may continue for as long as 6 months. The day before I will have blood work done by Dawn to speed up my ability to get to RIH on time.

October 20 Today was supposed to be the start of radiation treatment, but wires got crossed and it wasn't scheduled until Wednesday. My appointments will be at 12:40 every weekday - the only available time between 10 and 2. The radiation will continue for 5 to 6 weeks. We want to avoid rush hour traffic in cases where Carolee has to drive. We also wish to avoid impact to YMCA time etc.

In the afternoon the technician called delaying the start for a day. The "digital map" of what they want to do to my body isn't ready. The first two or three sessions will be with a low intensity beam (basically an X-ray) that they will use for calibration.

I still had to go to Dr. Knisley's phlobotamist Dawn for blood work a day ahead of treatment.

October 21 I started chemotherapy today. Dr. Knisley's office contains a chemotherapy room with hospital like isolation curtains. The chairs are comfortable recliners. Angela (the nurse) inserts an IV needle into my arm and begins a saline drip. After a while Leucovorin (a Folic Acid [B vitamin] look alike) is introduced into the IV bag. The more powerful 5FU (fluorouricil) is added through a port. It gives me a flush sensation. I will have to be careful that its most notorious side effect - diarrhea - doesn't overwhelm me. The first session took 2 hours and 40 minutes but Angela promises that the remaining sessions will only take two hours giving me time to get to Radiation at RIH.

October 22 I awoke about 1:45 AM with fairly heavy reflux. By 5:45 AM I found it very difficult to drink even a single can of Boost. I swam five laps and suddenly had to stop with severe diarrhea. By the time I got home, I was totally exhausted. I slept from 8:30 AM until 11:15 AM.

October 23 We arrived early at the hospital but there was a long delay. After checking and being told I would be next, a technician came out and said that I would not be next because the doctors were still working on the digital map but that it would be soon. Soon was not really too long, about another 15 minutes or roughly a delay of an hour in total.

I was placed on an X-ray machine which look like a box connected to a wide semicircular arm ending in a head about half a meter across. The whole rigmarole spins about you in a semicircle. After making the calibration runs and conferring with the doctors behind the radiation screening, the technicians said they had a good lock on me and asked if I was ready for a real dose. I said yes. The machine clicked, whirred and rotated about me but otherwise I could not see or feel anything. I saw the screening mechanism changed the pattern by sliding thin metal strips in and out until the right shape mask was created.

October 27 I saw both Dr. DiPetrillo and Dr. Knisley and discussed my problems with diarrhea and vomiting that seems to have lead to weakness and exhaustion. In fact my problem seems to be low blood pressure! My pressure has dropped to 86/60 . As Dr. Knisley says high blood pressure is one thing but you can't live with no blood pressure. I am off most of my medications. The Hydrochlorothiazide and the Norvasc have been dropped entirely. The Lisinopril and Metoprolol Tartrate remain but at a single dose a day. My weakness is from low potassium in spite of taking 550 mg per day.

I've begun to eat a little better. I have eaten sizable portions of chicken and chicken salad. I have tried ProSure - a fish based high protein drink. I literally have to hold my nose to gag it down.

October 30 This was a really poor day. It started all right but once diarrhea hit with a vengeance I lost stamina and was dizzy most of the day. I went to the Y, but felt exhausted by the time I got home. For the most part eating was OK, but my session with radiation at RIH was nearly a wipeout. I needed help to keep from wobbling and perhaps falling, in the hospital and heading back to the car. On the way home, I had to pull over at exit 7 and turn the car over to Carolee. I actually phased out between exits 6 and 3. In spite of naps before and after the RIH trip, I feel really pretty punk. I need to get some sort of blood pressure gauge. Hyper tension is the silent killer but hypo tension can kill you just as quickly - just pass out on I-95.

October 31 I started the day by visiting the eye doctor to pick up my new glasses, and to recovery my tailbone cushion which I had left at Dr. Knisley's office. On the way home I checked my blood pressure at CVS which is now a relatively decent 118/70 after four days of lowered blood pressure medications.

Carolee and I met with Karen Pasquaini, RIH's Senior Dietitian. Karen used to work with Dr. Gaissert while he was the EC surgeon at RIH. She has some practical ideas for stopping the "dumping" syndrome which is plaguing me. It seems likely that the diarrhea isn't true diarrhea but a condition where the body tries to dump water to dilute sugary or starchy foods. Even when I eat protein meals I have been drinking fruit juice which probably triggers the reaction. Milk isn't much better - it is common for EC patients to develop lactose intolerance. I have to eat protein at every meal along with normal foods.

Well of all the hobgoblins bedeviling me, none is worse than the plethora of foul concoctions that the medical/industrial complex is trying to foist on patients. The current leader of the pack is Deliver-2.0. The dietitian says it is so bad that trying to drink one can of this at a sitting is impossible. Yup! True! Its awful! It purports to taste like vanilla. Well Vanilla flavored what? Road tar? I am in no position to judge. I'll simply say, it won't make the flavor of the month.

November 1 I slept very poorly last night for no particular reason. I didn't even try to go to bed until nearly 11 PM and didn't get to sleep for over an hour. I was awake by 4:45. I did get back into bed after AM and slept for a bit over an hour. All day today has been a poor eating day. While the dumping syndrome seems to have subsided, swallowing without gagging is nearly impossible.

As Carolee keeps saying, it is so hard to keep all the balls in the air at one time. I need to eat as close to 2200-2300 calories as possible to have full vitality (1500 calories are required to avoid weight loss for total bedridden patients). However my stomach won't allow that much food in a day unless it is loaded with sugar and fats. If I eat sugar and fats then I trigger the dumping syndrome and lose the calories and minerals in spite of myself as diarrhea. If I try to eat I diet high in protein (wonderful in terms of bodily health and suppression of dumping) I run into the mechanical problem that I simply can't stuff more than about 1100-1200 calories of protein in per day. Protein is simply too dense and my stomach is too small. I'm swallow high calorie, high protein supplements but they really trigger the gagging reflex. I used to walk on a high plateau. On one side was anorexia but I never got close enough to see the edge. Other edges had problems like obesity, bloating and cholesterol. With EC, the once spacious plateau has become a narrow route along a mountain ridge. Gaps appear where only a jump across allows me to progress. The abyss of anorexia is all too evident. If I avoid that area, I still have the problems of eating.

November 3 Every Monday is "Doctor Day" when I meet with both Dr. DiPetrillo and Dr. Knisley. Today was an absolute winner. In a nearly perfect reversal of last Monday (October 27th),

• I seem to have kept "dumping" under control
• I'm eating a more normal diet with more real foods, especially meat
• My blood pressure is normal 118/68 with 1/3 of the prior drugs
• My weight has increased to 175
• I feel comparatively full of energy.

Both doctors were very pleased, needless to say and Carolee and I feel justly happy with the results. I'll look at the blood tests tomorrow, but good, bad or simple OK, it won't ruin a good day today.

November 4 C'est La Vie! My left foot feels very odd today. Actually I noticed a few twinges yesterday but the foot feels much stranger today. It has feeling and it obeys commands to walk but there almost seems to be a half second delay between the thought and the action. The top of the foot has an odd padded feel when I touch it. If I use a pencil to touch it, the sensation seems more "immediate". I called Dr. Knisley and told him the symptoms. I said I was told to call if any odd problems occurred and he agreed but he has no idea at all what if anything this might be. I will go in tomorrow if things get worse. If they get really bad I will go into the emergency room tonight.

When I got home after radiation, I couldn't eat a Pot Pie. Any attempt to eat or even drink water brought on vomiting. However things were OK prior to chemo and radiation this morning. I attempted the standard trick of waiting things out but it is a false hope. I can't even keep down pure water much less food. Strangely I don't feel bad actually eating the stuff but shortly after that my stomach begins to knot and heave violently. By 7:15 PM I have just begun to be able to keep mouthfuls of cold water down. While eating for today is a disaster, maybe I can hydrate myself through the evening.

I had to sleep for a substantial part of the afternoon. In spite of a reasonable room warmth (middle sixties) and the fact I am wearing my FDO "monogrammed" warming shirt over a standard long sleeve shirt, I was cold. I just cannot have too many good days without something new and odd. Nertz! Rats-a-frast! May the fleas of a thousand diseased camels infest the navel of esophageal cancer and associated radiation and chemo therapies!!!! May it live in interesting times in the company of congress critters!!!

November 5 The day started off like yesterday ended with dry heave vomiting even with nothing to trigger it. I have been able to sip little bits of water and in one of the sips I managed to swallow dissolved pills and vitamins. I called Dr. Knisley's office for anti-vomiting medicine. I will be taking Prochlorperazine to calm my nausea. In its first outing it seems to have done the job. Shortly after taking it I was able to keep down 4 ounces of Lactaid (a lactose free milk). About an hour later I was able to eat a portion of applesauce.

When I got home after radiation, I was so tired I simply had to take an immediate hour and a half nap. I drank 3 ounces of the dreaded Deliver goo. I have learned for the first time the meaning of "Stand and deliver!". No wonder so many waylaid travelers chose to fight their way out instead.

November 6 I tried a new product called Support. It has more protein than Deliver but fewer calories (470:360). The first "box" went fine, but then I tried a second box a few hours later and triggered a major "dumping" session. I had to pull off the road to use a bathroom on the way up to my radiation session. I just can't seem to keep all the ball in the air at the same time.

November 7 After a couple of high readings at the CVS blood pressure machine, we decided to buy our own machine. I will have to tell Dr. Knisley that I have partially returned to the blood pressure medications because my pressure is between 150/95 and 165/104 variously. Just what we needed, yet another added complication. I really need to talk with Dr. Lentz about adjusting the medications.

November 8 This day was a disaster food wise. Almost everything I took in ended up lost through vomiting. My weight overnight dropped a record 3.2 pounds although I really think some of that was simply dehydration. My blood pressure is high and my pulse rate is high. On the positive side, I managed to do a hour of heavy work in the garden, cutting down the entire north forty, the hostas along the road, and most of the beds outside the wall. I ended up with five large wheelbarrow loads of stuff for the compost heap. I was tired but I wasn't faint.

November 10 What an exhausting day. The day started with the landscaper we hired arriving a bit late to pick up the leaves. The drive to Providence was bad, and then everything got delayed. I didn't get in to the X-ray machine until late and my session with Dr. DiPetrillo was late. I reported my "clown feet" syndrome, my weight loss and my inability to eat. After this session he called DR. Knisley. The drive to Dr. Knisley's office resulted in my third turn over of the car to Carolee at exit 7. This session ran slow as well. I had a bout of diarrhea but was able to use his facilities in time. I was actually prone on the examination bench when Dr. Knisley came in, I was so tired. When we arrived home the landscapers still had not finished.

November 11 Well I am back to my naval weight of 165 - down 40 pounds from the start of this diary when I arrived home (actually 53 pounds from my all time heaviest). I should be reaching my "ideal" weight where my weight loss slows to a trickle. We'll see since I am still having eating problems. I am weak and very tired almost all the time now. I hope this chemo/radiation really works. I guess I'll settle for no sign of disease for half a decade as proof even though they may be blasting a non-entity. At least I have a one day delay from chemo due to Veteran's Day. This day actually went quite well. Although I went to bed early (8:45) in spite of an afternoon hour nap, I felt better and had energy.

November 12 Hopefully I am "on a new plateau" since my weight bounced up a bit. Very rough day. Chemo was slow and radiation was late. I was too tired to drive home. Managed to choke down only 900 calories. I spent the afternoon sleeping. The shipment of food supplements has come from Walgreens'.

November 13 I feel really punk on awakening. My weight seems to be holding. I came across information suggesting "clown foot" or "drop foot" may indicate a need for extra Vitamin B12. I can no longer "snap" my right toes or pick up pencils.

November 25 The last day of the initial session of chemo therapy. I'll be on 6 on/3 off weeks starting in December. I need the time off for feeding. I am eating only handfuls.

November 26 I saw Dr. Jon Solis my dermatologist. 5FlouroUracil has eliminated this seasons crop of keratoses. One small side advantage to stack up against a host of bad side effects.

November 27 Thanksgiving Today was the pits. Carolee made a tiny Thanksgiving meal which she ate and which I picked at. Next Wednesday is the end of radiation. I hope I can come back in weight. I'm down to 161.8. I have been eating less than 1000 calories a day for most of the last eight days.

November 29 Kevin and Mary arrived for a visit on their way home after they had Thanksgiving at her folks. It was very nice to see them. We had dinner at Shelter Harbor Inn. I actually ate most of a bowl of Crab/Corn Chowder. No incidents. I also ate lots of Belgian Chocolate without dumping. Only three days to go in Providence. I am getting very tired of these trips.

December 1 Today's session at RIH was as close to a fiasco as possible without a true disaster. We got there on time and the backup didn't seem that great but I never was called. We asked and we were told that we were next plus one after it was longer than usual for my turn. Then we were told that it would be a bit longer perhaps 5 minutes which turned into a quarter hour and several others went ahead of me. Carolee went to find out what was going on. It seems that they were about to start a third phase of treatment which required new X-rays. However my chart was "lost". So we were waiting on the AWOL charts.

Finally we got the charts and I went in for a very long sessions of X-ray pictures and unknown to me no treatment today meaning that they were pushing the completion date back another day. Carolee and I made it very clear that we didn't think much of the idea of skipping a day of treatment when it meant yet another days travel to Providence. They didn't even ask me what I preferred.

I asked three questions of Dr. John Purviance who was sitting in for Dr. DiPatrillo (1) What % of the lifetime radiation have I taken - roughly 70%. A normal X-ray adds 1/10 of one percent. The area of major effect is the spine. (2) Will there be a post treatment follow up visit. Yes, about one month later. (3) I asked what if any symptoms I should be alert to report. Primarily additional difficulty swallowing. This includes painful symptoms, and any sense of mechanical problems. My upper bowels presumably have a still intact adequate blood supply so damage from radiation should be minimal.

The drive home very late into the teeth of the Sun was very stressful.

December 2 Today we reached total fiasco, both X-ray machines broke down completely. My machine had a software hang-up in communications. The other machine broke a gear. They sent the other side people home but we waited until we gave up. I've made an appointment for Thursday afternoon, hoping to get a session in. I will call as we get close to each day's session.

One encouraging thing, I actually felt something akin to hunger this evening. I went into the fridge and "snitched" ice cream. It was my first even vague desire for food. Everything else has been duty and time.

December 4 I had my doctors' meetings with Dr. Knisley and Dr. Lentz today. Both went well. Much of the Dr. Knisley meeting was a standard rehash of the fact that I am doing very well. We discussed the fact that I will be getting CT scans at fairly frequent intervals stretched out after several years. The very fact that he is talking about what and how many tests I will have five years down the pike is encouraging. He was also pleased to see me eating a pudding when he came in. .

Dr. Lentz was catching up with a half year of EC changes in me. We spent most of the time talking about the blood pressure. I am to avoid pressures above 160/105 and pulse rates above 110. I can take metoprolol half doses up to twice a day to keep things in check but I absolutely should stay away from hydroclorothiazide. I may or may not cut back on potassium

December 5 This is the true last day of radiation if all goes well. We switched the appointment to 11 because a huge winter storm is due in this afternoon and evening with snow amounts measured at 10 inches and above. We are expected to get a period of sleet or freezing rain at the coast before the really cold air settles in. Joy.

December 9 The last radiation set which was aimed directly at the area of the tumor has done a real job on me. Each day for the last several, the pain has increased. Today while Tim visited it reached the point that I had to take codeine to keep the pain low enough to let me sleep. I believe the bowel is inflamed where the tumor used to be. When I take something soothing, the pain goes away as soon as the area is coated. Pain goes away and then returns as the coating wears away to be finally held at bay for hours by the medication.

December 10 We are headed to Boston on the train for an overnight visit to Dr. Gaissert at MGH. We decided not to visit him at Newton/Wellesley hospital because of the six hour long drive up and back. Frankly I'm not sure I could go six hours by car without staying over. So Boston by the train seems best. We'll stay at the Holiday Inn next to MGH.

I wish the pain in my belly wasn't so painful. I'm losing weight gain. I've finally reached a loss of 50 pounds since I came back from the hospital (155). This is 10 pounds lower than I ever expected to fall. I'm not particularly weak but I have no stamina and I nap a lot. I have to control the weight loss and the radiation burns and maybe the chemo are no help. My desire for food which had returned has evaporated again. I am depressed.

The train to Boston was delayed several hours, but a make-up train was created this side of NYC which cut the delay to about 1:40. While it was late, it really caused no problem thanks to the kindness of Bob in the AMTRAK office who called us to let us know the situation.

December 11 Our meeting with Dr. Gaissert was very pleasant as usual. Essentially while I can call on him at any time, I will be relying on Dr. Knisley from now on. I tried to eat as well as possible on the trip but I averaged only 1150 calories. Most of that was from a huge vanilla frappe I bought at Eat Street, MGH's large food court.

December 12 I swam again today for the first time in many weeks. I managed 1/3 mile (12 laps) before I decided discretion was the better part of valor. I did OK form wise but my speed was very slow. I won't time myself for weeks to come. Just swimming is enough. My assumption that I would get back to the YMCA soon proved very premature. I really didn't resume a full schedule until late spring 2004.

December 13 I made a determined push to load food in and managed to eat 1690 calories before my body wouldn't take anything else. I ate tuna casserole on rice for supper with Carolee.

December 15 This is the last day of experimentation before Chemo resumes tomorrow. I was able to eat a hard bun with lots of butter and jelly. I have had a set of major bowel movements which I hope do not lead to diarrhea. I am very unhappy about chemo starting up again. I make the best of it but I really hate being tied to a saline drip with chemicals.

I've had a very strange gagging late in the afternoon. I could not keep down chicken and it went on and on with lots of mucous. I suspect my attempt to eat bread/jelly/butter was the cause. Although I did not know it until the summer of 2004, this gagging was the first sign that my anastimosis would require dialations. I spent several months trying to overcome the saliva/mucous problem with drugs before dilations cured me.

December 16 This was a long tiring shopping day at the Mall in New London. I had to spend much of it sitting. Standing in stores is double torture for me. I hate shopping and worse yet standing without walking causes me to feel faint. We managed to buy me some clothes that fit. Anything larger than a 34 waist just hangs in folds around me now, and before the operation 38 waists were getting tight. It took forever to find a belt because they were all mislabeled. Finally succeeded by measuring my belt against the store belts. I can wear 33 waists very comfortably and 32 waists are coming into range.

December 24 This is a very odd Christmas Eve since we haven't decorated or done very much. Carolee packed me off to the cinema to see "The Return of the King". It is a very impressive version of the Tolkien classic, but it was a little strange to eat snacks out of baby food jars during the 3.5 hour film.

December 25 This is the least joyous Christmas I can remember. Even as an adult I woke early to turn on the tree and maybe play some carols. None of that this year - I slept until 8 AM, missing my 6 AM feeding entirely. We opened a few momentos after breakfast but otherwise it is has been a dreary day. I am very disappointed at my losing race to feed myself. This morning I inched closer to the 140s which I once thought were impossibly low. I see myself as something akin to a concentration camp survivor and something akin to an old man. I dress neatly everyday as much to hide how I look from myself as to be in style.

January 1 My weight has inched up over the last two days. I hope but don't really believe that I have finally reached the bottom of the weight cliff I have fallen off. I am eating nearly enough to maintain basal metabolism but little else. I am very tired all the time and weak. I have been going to the YMCA but my work output is 15 minutes on the bicycle or a third of a mile swimming. Both leave me very tired.

January 2 After successfully eating some of Carolee's steak dinner, my stomach went into rebellion this afternoon and night. It absolutely refused to take anything, even water without immediately vomiting it up. I became very thirsty (and I suspect somewhat dehydrated) but I could not keep even sips of water down throughout the afternoon and as late as 3 AM the next morning. However by 4 AM I finally got some water down. However the damage was done, my weight gain of the past several days is gone and I am down to 148 flat. I am very depressed about the setback but somewhat heartened that I will not have to go to the hospital to keep hydrated. I was only able to eat 1075 calories before the setback.

January 4 After an attempt to eat some salmon, I again had the problem of vomiting. I am beginning to suspect that certain dense foods form a "ball" which doesn't dissolve as rapidly as it should and block the exit from the stomach. I suspect that I am not producing enough stomach acid. Carolee has suggested that the last dose of radiation did some damage to the digestive track and that either it has slowed production of stomach acid or has closed the valve when dense foods are eaten. Both ideas seem plausible. We will discuss this with the doctors.

January 6 I talked with Dr. Knisley about my eating problems. He suggested that perhaps REGLAN would work. Carolee remembered that Dr. DiPetrillo had prescribed some which at the time did not seem to stop vomiting. However REGLAN is specific for opening the valve to the bowels. We are going to try it that way.

January 8/9 night What should have been a triumph - I finally broke through for a major caloric day (1565 calories) became a real setback when at Carolee's prompting I tried for the gold ring by taking Support as my last "meal". I reached the magical gain weight calorie level (actually 1925 ) except that two hours after eating I awoke to major abdominal cramps. For two hours I was on and off again on the toilet with a major dumping session. The net of it was I lost weight, almost 3/4 of a pound. Hopefully most of it is water loss and I will regain some or all of it. I am now down below 147 for the first time. I also had major sleep problems. I was unable to sleep for 4 to 5 hours throughout the night and finally had to go down to the couch.

January 16 I have had a fairly successful week and more with higher average levels of calories and protein. That is not to say that I haven't had setbacks like experiments which have gone awry. For example, I tried turnip today. It was shredded and coated with butter and it might as well have been a Brillo pad. Even four hours later I cannot get down juice with my pills. I have been in the 146-148 range for two weeks. I hope I am bottoming out - I should be as I reach basal metabolism level but the extreme cold (subzero) works against me.

January 20 For two days my belly has been upset. Yesterday and this morning I could not get anything, even water down and I lost two pounds. Since it was the day I get chemo, I knew I would see Dr. Knisley. Angela asked how I was and when I replied she said, "No chemo yet, you need to have blood work and talk with the doctor." It seems the combination of 5FU and leucovorin has a common side effect of sores and a dry mouth. I don't have these symptoms but a parallel symptom is mucousivitis (upset mucous membranes) which I do have along with a generally irritable bowel. Upshot, no chemo but a liter of saline with potassium, as my treatment and I am off the treatment until I can recover. I am trying to eat to recover from this morning's problems.

January 22 I made a trip to see Dr. Knisley because the chemo induced mucousivitis has triggered gingivitus particularly in my right eye. Some drops from CVS fixed this problem but I am feeling run down.

January 23 Go team! Yeaahh! I finally broke the 2000 calories barrier and big time without dumping or secondary problems. 2100 big calories and I didn't feel choked with food. I am still getting too much of my food from ice cream and I still can't manage fibrous foods (Can you say Beechnut and Gerber , boys and girls?) but at least the stuff can be bought on the regular aisles of a supermarket. Carolee wants me off ice cream soon but I need some type of concentrated caloric input and artificial foods wipe me out.

January 27 A less than great day but not horrible. I went out to the YMCA and the library but I slept a lot today. I could not keep oatmeal down and the rest of the day has been mediocre as an eating day. I am trying to get basal metabolic level calories in, but I'm still low at 7 PM.

February 2 This is a up beat day for me. The Patriots have won a squeaker, and I have managed to add a pound to my weight after the best eating day in five months. Best ever if you discount days on Jevity. Back to chemo in the morning. Ugh!

February 5 At my examination by Dr. Lentz, we dropped Norvasc from my drugs.

February 7 This was our first major outing since the operation. I went to my Aunt Joan's 75th birthday party. We stayed over at Moira's so that I could nap and sleep soon after the party. I doubt that I would have survived as well without a place to crash. My eating took a nose dive for two reasons - mucousavitis and irregular meals. I wish I could have eaten the shrimp that was served at the party but I didn't dare.

February 17 The chemo drugs are doing their side effect thingees on me for sure. I have intestinal aches and pains every day. And on the last few days I have had dumping again. A new and disturbing problem is "eating nightmares" which are dreams about being somewhere where I should be able to eat but find forces prevent me from doing it. Once I was in a company cafeteria where kids had been on a tour. By the time I got to the serving line everything edible was gone. Even the last crust of bread. Another dream was a large picnic where my meal was eaten when it was supposed to be kept for me while I tended cars. By the time I got there, it was raining and all the paper plates and cups were gone along with my food. These are becoming a nightly event. Sometimes they come several times in a single night. I wake up feeling horribly depressed and it is easy to see where the problem arises.

March 1-2 What a difference two days can make. Day 1 and I felt on top of the world. I ate up a storm and even managed to eat mixed nuts on top of a major meal including meat, veggies, ice cream, and tea. The next day after chemo, I suffered dumping badly. Sigh!

March 8-9 Chemo has really made life miserable. I have been sleeping it off as best I can but I feel really sick to my gut (not stomach anymore). The sensation is like cramps but quite deep. I have had a fair amount of dumping over these days. It was very hard to go ahead with this last dose of chemo when I was still feeling ill from last week's dose. I have reach an all time low weight since I was in grade school. I am now at 140 pounds which is more than 1/3 of my original body weight.

March 10 Carolee and I went to the seminar on Nutrition held by the ACS (Melissa Campbell) at Dr. Knisley's office. It was quite good although I was the only male in the group. I was sort of the prize guinea pig since everything that could happen in eating has happened to me except eating normally and gaining weight. Every side effect listed has happened to me, sometimes seriously like weight loss and inability to eat enough to regain weight. [Melissa sent me a cordial Thank You note for being so active.] I did get some useful information. "Designer" brand Whey is very much suggested as a protein source. Spagettios can be eaten whenever soft food can be tolerated.

March 15 We had planned to drive to Providence in the morning to get me a new suit. My only prior suits are now too large to wear and a couple of weeks ago I gave them to Blue Mitten. However, a storm is coming that makes this trip look like a very bad idea. Predictions vary from 2-3 inches of mostly ice to 10 inches of wet snow. Even if we make it in the store may be understaffed. It seems crazy after today which had me walking a mile to the end of Nichols Road in 55 degree weather. Figures! We are royally pissed off.

March 18 Kevin stopped overnight after a business trip to a local hospital. I tried on his suit jacket. I'm down from a size 44 regular to a size 38 regular. The incredible shrinking man.

March 21 Yesterday was a very disappointing day. I started with high hopes of actually making progress with eating and ended up with a terrible day trying to keep food down. My intake was actually a mediocre 1655 calories but in reality it was probably less than 500 that I actually kept from barfing along with heavy phlegm. I lost weight badly dropping from 140.4 to 138.8, the lowest point in my cycle so far. It wasn't all water loss either because I was able to drink without throwing up everything I sipped.

March 23-24 Carolee and I did an overnighter to Providence - sort of a trial run to see how I'll do on the trip overseas. We bought me a suit - Navy pinstripe at Nordstrom's. The salesman and the tailor had differing ideas about my first choice and I finally decided to cut and go with my second choice. I am down from a size 44 to 38 Regular. My shirt size is down from 16 to either 14.5 or 15 with a 33 sleeve. I picked up a blue shirt with a silver gray tie. I like the stuff but at nearly 780 bucks I got sticker shock. I haven't bought a suit since the late 1980s. It is weird to think of myself as a "smaller" person. I was quite tired by the time I crashed at the Marriott's CourtYard where we used a awards night from earlier trips.

March 26 Had an office visit with Dr. Knisley which went very well. We had some questions which came back fine. We asked when we would be doing some follow up testing - basically it will be toward the end of May after chemo has had two months to work itself out. I checked on the "bump" in my hand. As expected it is part of my DuPretyn's Syndrome - a cyst where the tendon enters the finger. I asked about the trip and whether I needed any special medications or should avoid any medications like sea sickness drugs. The answer was take whatever a normal person would take. I asked about my bending over and was told that exercise was the ticket there but that I had no problem. We discussed my continuing weight loss and eating problems but Dr. Knisley wasn't particularly worried and said he expected me to put on 5-10 pounds. We'll be seeing Dr. Knisley again in early May.

March 28 Carolee and I made a trip to Enfield Connecticut to see Ellen and Mo before he dies which is likely in the next few days. Basically he has renal failure after abscesses in his kidneys. I find it hard to believe that his battle with colon cancer isn't involved in someway but perhaps not. The trip was physically hard on me because I could not keep any food at all down all day.

April Carolee and I took a trip on the Princess Star through Italy, Greece with stopovers in Croatia and Turkey. I ate pureeed regular meals.

May 3 I discussed my current blood preassure condition with Dr. Lentz. I am now back on regular half year check-ups rather than monthly check-ups.

May 10-13 After several days with extreme mucous problems and an inability to eat anything, Dr. Knisley called Dr. Lavigne. The upshot of it was I had my first dialation (in a series of dialations). My anastimosis was very narrow and Dr. Lavigne had trouble inserting the EGD tube. After the dilation I was able to swallow for a couple of days, but today (April 13), the mucous has returned after I tried to eat a Graham Cracker. I am scheduled for a second dilation in two weeks.

May 17 Dr. DiPetrillo asked to see me for a final time. Basically he offered to resume anytime I think I might need his opinion but effectively we are through radiation.

May 26 Office visit with Dr. Lavigne in preparation for second dialation.

June 1 I went into Westerly Hospital for my second dialation a day early. This was lucky because a piece of Brazil nut had closed off the anastimosis and I had been unable to eat or drink since May 29 at the Brown University Reunion. Dr. Lavigne was (rightly) very annoyed with me. I have dropped (partially due to dehydration) to an all time low weight of 134.0 pounds. After the dialation my eating has been considerably better.

June 14 Meeting with Dr. Knisley in preparation for CT Scan. He is very happy with my progress.

June 18 Yesterday, my throat closed down and I couldn't eat. I was concerned that I would not be able to drink the contrast dye in preparation for my CT Scan at 8 AM. However I had no problem swallowing the quart of liquid in two sessions of a pint each. Stuff tastes slightly metallic but compared to some of the "food drinks" I used to have to take it is ambrosia.

June 21 Office visit to Dr. Lavigne to discuss a THIRD DIALATION. We will hold this in abeyance for the time being. My 2000 colonoscopy "polyps" turned out to be benign, so we will not do another colonoscopy for a period of perhaps a few years.

Dr. Knisley called with the results of the CT Scan. They are ambiguous but contain "shadows" or "granularities" in the left lung. Certainly not the glowing bill of health that I was hoping to receive. Perhaps I will advance the date of my meeting with Dr. Knisley to discuss these results more completely.

July 2 While visiting Kevin and Mary, I became dizzy at the Air and Space Museum and passed a small amount of dark urine. At their house I passed a good deal of bloody red urine. I called Dr. Knisley's office after hours and talked to Angela who told me to get to an ER. In the ER, Dr. Kevin Campbell confirmed I was passing blood but said it was unlikely to be kidney stones. He said that it is probably a polyp or a tumor in my bladder.

July 8 I met with Dr. Franklin Leddy (my urologist) in fis office today. I will be scheduled for a bladder examination to rule out any possible cancer spread.

July 13 I had a follow up PET Scan at Lawrence & Memorial Hospital in New London. The results of this which came back roughly a week later indicated that the shadows seen in my left lung were scar tissue and almost certainly benign. Once again I am officially NED.

July 19 Today's weeting with Dr. Knisley was routine. He was glad to see I am slowly putting on weight.

July 27 Dr. Leddy performed a cytoscope examination on my bladder. There are no polyps or tumors. The prostate is enlarger and the blood vessels near the urinary tract are near the surface and fragile. They appear to be the cause of the bleeding and are minor.

July 29 After having severe swallowing difficulties yesterday afternoon, saliva collecting and a complete shutdown except for a spoonful of ice cream today, I called Dr. Lavigne's office and had my third dialation today. I will have to make another appointment to have something a little more permanent done. Dr. Lavigne's Nurse Practioner (Lori?) suggested that this might be a stent. In a way I hope it isn't.

August 16 Dr. Lentz office visit went particularly well. How can I tell? Easy, he is scheduling my next visit more than four months out!

August 23 I had my fourth (and hopefully final) dilation with Dr. Lavigne today. I am eating quite well and easily subsequent to these dilations.

September 2 I can't help feeling that in some way today is graduation day. At least it is the doctor's office visit closest to my one year anniversary of surgery. Dr. Knisley is extremely pleased with the way evrything is going. I have put on some real weight and am now 149.0 pounds. Even though I no longer measure my food proportions, I am obviously eating enough to gain.

Who is Who

—Family

Carolee [Carol] wife and primary caregiver.
Timothy [Tim] older son
Kevin younger son
Mary daughter in law - Kevin's wife.

—Doctors

I have alphabetically listed the doctors by their relationship to me. I understand that many of them have much broader areas of expertise. Hopefully I have not gotten any of them wrong but some of them were known to me only while I was very ill recovering at Massachusetts General Hospital.

Jeremy Abramson - Radiation Oncologist at MGH
Brenna Bounds - Ultrasonic Endoscopist at MGH
James Cacciatola - Thorasic ICU Resident at MGH
Kevin Campbell - Emergency Room Physician at VMC
Ronald Chen - Radiation Oncology Resident at MGH
Thomas DiPetrillo - Radiation Oncologist at RIH
Panos Fidias - Medical Oncologist at MGH
Henning Gaissert - Thoracic Surgeon at MGH
Robert Knisley - Medical Oncologist in Westerly
Bradford Lavigne - Gastroenterolist in Westerly
Franklin Leddy - Urologist in Westerly
Walter Lentz - Primary Care Physician in Westerly
Annetta Murphy - Anesthesiologist at MGH
John Purviance - Radiation Oncology Resident at RIH

—Hospitals

MGH - Massachusetts General Hospital, (Boston MA)
RIH - Rhode Island Hospital, (Providence RI)
VMC - Virginia Medical Center, (Arlington VA)
L&M - Lawrence & Memorial Hospital (New London CT)

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