January 29th, 2000: While on a business trip to Europe I first noticed slightly darkened stools. This came and went for next couple of weeks. They were dark enough to notice but not enough for serious concern.
February 19, 2000: While on a trip to Texas, I began to notice a shortness of breath after even mild degree of exertion. Stools were same as before. No other symptoms.
February 24, 2000: While visiting my son in Virginia, I passed black, tarry stools for the first time. Shortness of breath is more pronounced and I hear this booming, beating sound in my head.
February 28, 2000: I made an appointment at my doctor's office for that same day. Nurse practitioner did fecal occult stool analysis and took my blood count. Stool sample was positive for hemoglobin. Blood count was a disaster with red cells at 2.0, hemoglobin at 8.2 and hematocrit at 18. Was referred that same day to a local surgeon who does endoscopic exams in my town. The surgeon prescribed Prilosec immediately and scheduled me for endoscopic exam on March 1, 2000 at the local hospital.
March 1, 2000: Endoscope performed with me mildly sedated. Doctor at first could only find 3 small ulcers in the stomach and nothing in the duodenum. Stating that the ulcers were not sufficient to account for the anemia he continued his exam and finally found a 3 cm mass with a 1 cm bleeding hole in the middle in the folds of the upper wall of the stomach. He took 2 photos and 7 biopsies to complete the exam. Afterwards he told my wife and I that the lesion looked "borderline" to him and he had sent it to the local pathologist and promised to call us in 48 hours with the results.
March 3, 2000: Doctor called and said local pathologist could not identify the cells and was sending the slides to the University Medical center a half hour away for special staining.
March 6, 2000: Went in to see the surgeon who explained that the pathologists needed to do more involoved tests to find out what the cellular composition was. He said it could still be just a very nasty ulcer or a low-grade Lymphoma.
March 8, 2000: Visited my family doctor who checked my blood counts and determined that we had stopped the bleeding and that I had stabilized at the already low readings. She scheduled me for a full body CT scan the following week.
March 10, 2000: Doctor called us with the diagnosis of Low Grade Non-Hodgkins Lymphoma. It felt like hearing what I always imagined a condemmed criminal would feel upon hearing a death sentence. This was one of the all time "low" days throughout my ordeal. The surgeon said it might not be too bad and might be treatable surgically. The thought of a resection of my stomach terrified me almost as bad as the word "cancer".
March 11, 2000: I woke up early and was determined to find out as much as I could about NHL. I quickly learned how many different types, grades and stages there were to the disease. I spent several days wading through all of the available information on the web. Prognosis of the various "flavors" of NHL ranged from very poor to quite encouaging. After comparing my symptoms and what diagnosis had been done to data with all the available material, I felt reasonably confident that I indeed had a low-grade Gastric Lymphoma. Alot of the available literature suggested that a high percentage of these cases were a result of H. Pylori infection and treatable with antibiotic therapy. I felt greatly encouraged.
March 14, 2000: Had a series of 3 CT Scans done at the local hospital. Easy procedure - only problem was when the vein used to inject the contrast dye "blew". Enough dye got in so we didn't have to repeat.
March 15, 2000: Initial H. Pylori tests were negative. Had my initial appointment with the local Oncoligist. After extensive discussions with her, I felt that she was the right doctor to treat me. She was amazed at how much I already knew about Maltoma and the other Lymphomas. She ordered a more exacting test for the H. Pylori, a complete blood workup and a Galium scan. She also scheduled me for a bone marrow biopsy. My CBC results showed some improvement but I was still weak and easily exhausted.
March 16, 2000: CT Scan results showed no abnormalities other than thickening of the stomach wall.
March 20, 2000: Began what was supposed to be a four day Galium scan. Another easy procedure. I was injected with a radioactive Galium solution the first day and then had daily scans.
March 23, 2000: Got a phone call from the Nuclear Medicine department telling me that they saw something on the last two days scans and that I needed to come in for a fifth scan the next morning. I was already scheduled for a bone marrow biopsy that morning at the University so I had to work the new scan in very early. I awoke the next morning and felt absolutely terrorized. The spot on the scan, the bone marrow biopsy, the knowledge that all my blood tests results should be back was overwhelming. My blood pressure shot up over 200 and I was a mess. This may have been the worst day of all. My Oncologist met with us before the BMB and went over the results of the blood tests, the Galium scan and the C-T scan. The blood tests showed continued improvement on the CBC and all of the other values were in the ranges she expected given my disease. The second H. Pylori test also came back negative. The Galium scan image was assesed to be nothing more than an area of divirticula activity and I was quite relieved. My Oncologist mentioned that she was presenting my case at the University tumor board the following Friday and invited me to attend the presentation. I quickly agreed. I was then sedated for the BMB and it went ahead without any problems.
March 28, 2000: Met with the Oncologist and reviewed all the rest of test results. The diagnosis was a Low Grade Monoclonal B-Cell Gastric Lymphoma with a Plasma Cell component, Stage 1-E. The treatment matrix was to try the Triple Drug therapy (Prilosec, Amoxicillan and Biaxin) for three weeks, despite the negative H. Pylori tests. I was skeptical given the negative tests but agreed to give it a try. If that failed, then radiation, chemo or watchful waiting were our alternatives.
March 30, 2000: Attended the Tumor Board presentation at the University and learned a great deal. I got to see all of my scans and slides on the "big screen" and listened to both her presentation and the feedback from the rest of the Oncology staff (Surgical Oncologists, Radiation Oncologists, Hematology Oncologists, nurses, etc.). It was very comforting to get 24 free "2nd opinions" all of whom agreed with both the diagnosis and the treatment plan. Of great joy to me was the fact that the Surgical staff said that they felt that they would not be playing a part in my treatment. I got to meet the Radiology Oncologist who would later be assigned to my case and had a very informative and interesting discussion with him that convinced me that I probably had a course of radiation therapy in my future.
April, 2000: I continued to take it easy and work on building up my hemoglobin through careful diet. The loud booming noise I could hear in my head (my heart overworking) gradually went away. The Oncologist put me on Iron supplements to help speed up the hemoglobin formation. I had my annual physical and was relieved to hear that other than the fact that I had a Lymphoma and was anemic that I was otherwise healthy.
May, 2000: I started resuming alot of my activities at work and in my leisure time. The monthly blood work showed my red cell count just edging over the line into the normal range with my hemoglobin and hematocrit slowing increasing. These values had come up to halfway between where they had been at their lowest and the bottom end of the "normal" range.
June 1, 2000: Went in for a second endoscope exam. The same doctor performed it that had done the initial one. He reported that although the bleeding had stopped and the ulceration was healing that the lymphoma was still there and otherwise unchanged. Biopsies confirmed that the density of the malignant cells was unchanged. I was not surprised but went through a few days of mild depression, having hoped against hope that through some miracle the drug therapy would have done the job.
June 26, 2000: Had my first appointment with Radiation Oncology department at the large University 25 miles from where I live. They did a battery of routine tests, they took a very complete medical history and did a limited physical exam. The doctor, nurse and head technician explained what lie ahead. I would go in for a "simulation" in a few days where they would do a contrast study using a fluoroscope and then a small C-T scan to locate the exact location of my stomach and the adjacent lymph nodes. They drew a number of shapes and targets on various parts of my abdomen and sides to mark where things were and the aiming points for the machine. This was done with magic marker and they sent us home with a spare one so my wife could touch me up if the marks started to fade or rub off.
July 10, 2000: Went for my first radiation treatment. It was pretty simple. I laid on the treatment table with my shirt off. They put a custom made focusing element in the machine that shaped the radiation field to the profile of my stomach and lymph nodes and then "nuked" me for about a minute on my front side. They then swung the machine under the table and gave me another dose of about a minute on the back side. The whole thing was painless and took only five minutes total. I was receiving a fractional dose of 150 centi-Grays each day. About an hour later I had some mild nausea and was abit sleepy. I took a nap and felt fine when I got up. The same regimine was repeated every day that week with the nausea getting a little worse and my tiredness getting more severe. I mentioned to the nurse toward the end of the week about the nausea and the doctor wrote me a prescription for Compazine which I took in the morning before coming in for treatment and again 30 minutes after treatment. This helped tremendously.
July 17, 2000: I started the week "recovered" from the previous week's fatigue by virtue of having had no treatments over the weekend. My second week of treatment went much like the first with each day during the week having slightly increased side effects (fatigue and nausea). I was examined by the doctor once each week throughout my treatments and had blood work done each Monday. Radiation can reduce the patients white cells and platelets to an unhealthy level and they needed to be monitored. (Mine never dropped out of the normal range). My hemoglobin continued to rise 0.2 to 0.3 per week, despite the radiation and the fact that I'd discontinued the iron due to the nausea.
July 24, 2000: I reported for the beginning of my third week and found out that there was a problem with my "field". An xray showed that we weren't getting as much radiation as we needed to on the adjacent lymph nodes. They made up a new focusing element reflecting the larger area and to my dismay upped the amount of daily radiation by 20% to 180 cGy. I noticed a difference almost immediately. Where I had tolerated the 150 cGy verry well, the 180 was alot more difficult. The doctor increased my Compazine and we got the nausea back under control. I was quite literally exhausted each day and slept about 2 to 3 hours each afternoon.
July 31, 2000: I began the last week without feeling my customary recovery over the weekend. I knew to expect this and that made it easier. Having the finish line in site made things easier as I counted off the days. I finished my treatments on Friday, August 4 and bid the technicians and nurses farewell.
August 5, 2000: I was finished with my treatments and had an opportunity to take a fairly relaxed business trip to California. Here is where I exercised poor judgement. I figured that since I was done with my treatments that I could handle a trip with little or no problems. I greatly overestimated my strength and hadn't realized that the lethargy and nausea would be with me for weeks to come. I found myself very tired, with a poor appetite and with an unsuspecting case of depression settling in on me.
Late August: Had a death in the family that compounded my depression. I felt better each day physically with the fatigue lessening and the mild stomach discomfort lessening ever so slowly.
September, 2000: Went to see my family doctor about the depression and she said it was quite common, especially in male patients to experience these kinds of feelings after completing treatments while waiting for post treatment examinations and results. She prescribed a mild anti-depressant that I took for about three months. It helped me through the emotional rebound that is apparently a normal aspect of cancer and its treatment.
October 2, 2000: Went in for my 3rd endoscope. This was a major event as it would show how effective the treatment had been. The results were immediately apparent as the surgeon doing the work expressed outloud how much better things looked. He saw no evidence of the Lymphoma visually, only scar tissue where the radiation had done its work. He did see several irritated areas that he suspected were artifacts of the radiation. He took a series of 6 biopsies to be sent to the university lab for pathology analysis.
October 12, 2000: The big day! Started off with blood tests in the morning. I knew it was going to be a good day when the lab tech got a good stick on the first try without so much as a pin prick felt. My wife and I went in to see the Oncologist that afternoon and had all the results back. The endoscope we knew had been favorable, the blood work was good with all values at or headed toward normal and the biopsies showed no evidence of any malignant cells. We were ecstatic. I had to continue to see the Oncologist every two months with monthly blood work in between.
January, 2001: My blood tests came back and my Hemoglobin is finally at the 14.0 level and my Hematocrit is at 43. I've passed out of the anemic range back into the normal range with most of my blood chemistry. A few of the more exotic values are still a little high but are moving slowly back toward the normal range each month. The Oncologist is letting me have an occasional glass of beer or wine for the first time since this all started.
March 19, 2001: My fourth endoscope. I'm getting to be an old hand at this. Well, don't ever get too complacent because you never know. The IV in my hand infiltrated and I didn't get a good dose of the sedative used to mello me out for the procedure. The doctor was a bit late for the procedure dure to another patient with an emergency gall bladder. I was only slightly sedated for the scope and had trouble keeping it down. I struggled to cooperate and the doctor did what he needed to do. The pictures were beautiful with an unremarkable stomach lining and only a couple of small isolated spots of recovering scar tissue. The biopsies showed no Lymphoma and the cells that were there continuing to be more normal each time.
March 26, 2000: Had a screening colonoscopy just to make sure nothing was amiss in the lower GI tract and other than 3 small benign polyps, nothing of interest showed up.
March 29, 2000: Feels like graduation day. My Oncologist gave me the results of all the reports, and it was all good news. The thing that made me feel the best was that I don't even need to go back for a follow up for 6 whole months. If that shows no problems, I will only need annual checkups after that. What a year this has been.
I was diagnosed a couple of days after my 55th birthday. I just turned 56 this past February. I feel real good now both physically and mentally. I don't have any physical symptoms any more. No tenderness in the stomach (last symptom to disappear) since January. I feel very healthy and have most if not all of my energy back. Mentally, I feel better than I ought to. I sincerely feel that I have beaten this and given the low re-occurance rate of Gastric Lymphoma, the odds are on my side.
I don't think I would change a thing about what I did all along the way. As best as I can tell, we made all the right decisions. I think all the love and support from my family and friends helped alot, I seriously believe that everyone's prayers were a tremendous source of strength and comfort, I had a good mental attitude, was fairly young, otherwise healthy and had some great doctors.
As far as advice to those who come after... Get checked out at the first sign of trouble, learn as much as you can about your type/grade/stage of Lymphoma, don't be afraid to tell your family and friends about your disease (a burden shared is always lighter), pray to whatever deity you believe in, find a good team of doctors and work with them.
I am now approaching the third anniversary of the completion of my radiation treatment for Primary Gatric Lymphoma. I was in for a complete round of tests last week and my Oncologist reports that I'm continuing to do well and show no signs of the Lymphoma. I was being endoscoped at 6 to 12 month intervals but they have been discontinued as they have all been "unremarkable". I'm currently having blood tests done at 9 month intervals (all values normal) and am seeing some member of the medical team every 6 months.
My oncologist has told me that she has seen an increase in the number of lymphoma cases that she is treating. A second Gastric Lymphoma patient has recently completed the same course of treatment that I took and she is progressing much the same as I have.
My wife was diagnosed with Invasive Ductal Carcinoma of the left breast soon after my last e-mail to you in 2001. She had a mastectomy, 6 months of chemo and is doing quite well. We have certainly had our share of cancer at our house.
Written by John M. Murphy © 2001-2003
Updated 9-20-2003
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