Updated on January 28th, 1998.
Married, two children
Getting Diagnosed and Moving On
The Boston Red Sox are indirectly responsible for my diagnosis back in October of 1993. I was in the habit of falling asleep listening to the baseball game on my headphones. Using the headphones meant lying on my back instead of my side, my usual sleeping position. Sometime in August I began to experience some pain and discomfort in my abdomen while lying on my back. The pain wasn't severe, sometimes I had to sit up and watch TV for awhile until it subsided. I thought I might have the beginnings of an ulcer.
I decided to go to my HMO in the second week of September. The nurse practitioner ordered an ultra sound that reveled an abnormality on my pancreas. A follow-up CT scan showed a definite mass. At the time, we were hopeful that it was a benign mass. I was on the young side for pancreatic cancer and the position of the mass, on the head rather than the tail, made pancreatic cancer less likely.
My doctors decided that the mass had to come out and scheduled a Whipple procedure. After several delays caused by scheduling various tests and illness on the part of the surgeon, I went into surgery on the morning of October 15, 1993. The surgery was supposed to last something like seven hours and I knew something was wrong when I woke up in the recovery room a mere four hours after going under.
The surgeon found a tumor something between a golf ball and tennis ball in size extending from my pancreas to my stomach and appearing to infiltrate both organs (this assumption turned out to be incorrect). She also found numerous metastases, small nodes seeding my intestine, stomach, both omentums, diaphragm, aorta, and peritoneal wall. She decided the disease was unresectable, took numerous biopsies, and closed me up. I sometimes wonder about how much disease I would have had at diagnosis if not for the Boston Red Sox.
The news that I had an inoperable cancer was pretty devastating. I was a 33 year old with a newly minted doctorate in economics, a new job, a wife, and two children ages 4 years and 6 months. At first, there was some hope that, even though things were bad, it looked like I had a "well-behaved" slow growing neuroendocratic cancer. This glimmer of hope vanished when the pathology came back and I was diagnosed with desmoplastic small round cell
DSRCT had only recently been classified as a separate cancer. At the time of my diagnosis, the entire medical literature consisted of less than two dozen journal articles dating back to 1989. The majority of the literature was devoted to the pathology of the disease rather than its treatment. The articles that did cover treatment options were not encouraging. They described an aggressive, chemo resistant cancer that usually resulted in death. My oncologist, Dr. William Sikov of the Miriam Hospital in Providence, told me that, if I had a good response to my initial chemotherapy, I might be expected to survive for 20-24 months. Well, if you're newly diagnosed and reading this you should know that: (1) I didn't have a good response to my first chemo, (2) I'm still going 49 months after diagnosis. I'm not disease free, but I'm still going.
To this day, I believe that the weeks immediately following my surgery, but before I began chemo, were crucial to my developing a frame of mind for dealing with the ups and downs that are part of living with cancer. First, I was fortunate to receive a copy of Bernie Siegel's Peace, Love and Healing. This led me to one of his other books, Love, Medicine and Miracles and from there I began to devour similar books by other authors. I got a lot out of these books in those early days, not the least of which was an understanding that mental attitude is as important for dealing with a chronic disease as any drug or therapy that a physician can prescribe. I decided to cultivate the right frame of mind. I also began to meditate and use guided imagery. The medical jury is still out regarding the effectiveness of guided imagery, but I can say that I received of sense of empowerment from going through the process, especially in days before my first chemo. It was good to do something that might work against the disease.
I also began to see a therapist, a wonderful woman named Martha Harris. She helped me focus on living for the present. The future will come to pass no matter what and I can't change that, but I can enjoy today and love my family today and live today - if I choose to. With her help, I came to understand that it's possible to die of cancer long before you die of cancer.
At Martha's suggestion, I joined a support group at the Hope Center in Providence. I eventually left therapy, but I continue to meet in group. It has become an important part of my life (I'm now on the Board of Directors) and is one of several positive forces in my life that developed after my diagnosis.
- CAP (Cytoxin-Adriamycin-Cisplatin)
Tried two or three cycles of CAP, followed by a CT scan. These treatments usually wiped me out for several days. Zofran and Compazine controlled the nausea. Unfortunately, there was no change in the size of the prominent tumor. Dr. Sikov wanted to change chemo, but I had learned about the work of Dr. Paul Sugarbaker at the Washington Hospital Center in Washington, D.C. Dr. Sugarbaker combines aggressive surgery with intraperitoneal chemo. During a phone conversation he indicated he was willing to try to treat me. I had one more cycle of CAP (since the disease was stable) and then took six weeks off before surgery.
Surgery and Intraperitoneal Chemo
I had a 9 1/2 hour operation at The Washington Hospital Center on February 22, 1994. Drs. Sugarbaker and Stevies found that my large tumor was between my pancreas and stomach, attached to the surface tissues of both organs, but invading neither. They were able to completely resect all the visible disease in my abdomen. The resection required taking my gall bladder, both omentums, and my appendix. One tumor had completely penetrated my diaphragm. Following this resection, heated (110 degrees Fahrenheit) cisplatin was introduced into my abdomen and my incision was closed. The surgeons had placed a catheter and four drains in my abdomen. After about an hour, I think, they attempted to drain the cisplatin (one problem I had was my drains never worked).
I had a day or so to recover from the trauma of all this and then they began to introduce adriamycin (body temp.) once a day for five days. Each night a nurse would come and attempt to get my drains to work. They didn't. Then she would hook up a 1.5 liter bag to my catheter and begin the lavarge. Since nothing was coming out of my body, the weight gain was pretty dramatic. Eventually, the body absorbs all the stuff swishing around in the abdomen.
I was hospitalized for 22 days, a fairly fast discharge for this type of surgery. I was warned to prepare for a 4 to 6 week stay. After coming home, I had pronounced GI problems for weeks and had some degree of cramping and diarrhea for about 20 months. These symptoms got better with the passage of time.
On one level, this was a very difficult procedure to go through. There is surgical pain, lots of plastic hanging out of your body, the adriamycin treatments, etc. On the other hand, I was medicated enough, especially in the beginning, so that the actual experience wasn't that bad. It's worse anticipating the procedure and even remembering it.
- ICE (Ifosmoside-Carboplatin-Etoposide)
Five or six weeks after my return home I began follow-up chem. This regimen was given in the hospital over four days. I'd usually go in on a Monday, receive the chemo Monday, Tuesday, and Wednesday, and then receive fluids overnight. I was usually discharged before noon on the fourth day.
These were tiring treatments. First, staying in a hospital is takes a lot out of you. Because you're hooked up to an IV pole there is a tendency to stay in bed and avoid even simple exercise like walking. The hospital I was in has narrow corridors and is not walker friendly to begin with. And of course, the chemo takes something out of a person too.
Another problem that I ran into during these treatments for the first, but unfortunately not the last, time was neutropenic fevers. As my white blood cell count fell I developed fevers and spent time between chemo cycles hospitalized on antibiotics. After the second hospitalization we decided to remove two impacted wisdom teeth, the suspected source of my infections. This took care of the neutropenic fevers for the rest of the summer, but made for one especially rough cycle (chemo in the hospital, home for a week, neutropenia hospitalization, ORAL SURGERY, and, one week later, chemo).
I finished my fourth cycle of ICE during the beginning of August, 1994 and went back to my teaching job at a local university in September. The plan was to teach until the end of February ( we have trimesters and our third term begins in March) and then go back to Sugarbaker for a third look surgery. The plan was set aside when I developed an obstructed bowel late in October. Fortunately, the cause of the obstruction was an adhesion from the surgery and not more tumor. A twenty minute operation took care of my problem and I was back on my feet in time to begin our second term in December.
I went back to the Washington Hospital Center in March, 1995. Dr. Sugarbaker performed a second look surgery finding only two small nodes of disease (an pencil eraser in diameter) on my pancreas. He removed the nodes and I was once again clinically disease free. I left Washington somewhat encouraged. Back home, Dr. Sikov was more cautious. Yes, the volume of disease was small, but six months after some pretty aggressive treatment a surgeon had gone looking for cancer and found it. The fact that my cancer returned so quickly was not an encouraging sign in his opinion.
- More Chemo: Taxol and Carboplatin, followed by Adriamycin
Once again, my "summer vacation" became a chemo getaway. Dr. Sikov reasoned that taxol had a track record of getting a response in chemo resistant tumors and suggested we give it a try. I had four cycles of taxol and carboplatin. I was thankful for the limited side-effects of this combination. There was little in the way of nausea - nothing that couldn't be controlled by zofran. I had the "blahs" for a day or two but usually bounced back fast. The worst side affect was the aching felling in my knees that would last a couple of days. It wasn't painful, but I couldn't get comfortable.
In hindsight, I'm not sure the decision to use taxol was a good one. The medical literature now reports a couple of cases where people with evident disease received taxol and were taken off after two cycles because of disease progression. Of course, we didn't know this in the spring of 1995.
We followed the taxol-carboplatin with two cycles of adraimycin. Adriamycin isn't the easiest chemo, but the fact that I knew we were stopping after only two cycles helped me get through it.
Once again, I returned to work in the fall. This time I was able to teach two consecutive terms.
- Surgery (again)
We scheduled my third operation with Sugarbaker on March 13, 1996. I'm not all that superstitious, but in hindsight I wish I had chosen another date! Ct and MRI scans from January and February indicated that something might be going on below my liver, so I wasn't too surprised to by the outcome of this surgery. But I was deeply disappointed and more than a little scared.
Dr. Sugarbaker found a tumor wrapped around my portal vein, extending to my aorta. The tumor is essentially part of the vein and isn't resectable.
High dose cytoxin
I was sent home with a recommendation to try radiation, but after consulting with Dr. Kushner, from Sloan-Kettering, we decided to try a cytoxin in a high dose (5 grams/m2). The plan was to do two cycles, get a ct scan, and if the tumor was responding, finish with a third cycle.
I completed two cycles of this treatment. I was treated in-hospital for three days each time. Despite getting IV zofran and ativan, I experienced nausea during the first cycle and threw up in hospital and in the car on the way home. That was the first time I ever got sick during a treatment. I received extra Ativan during the second cycle, which helped quite a bit. I only threw up in the car on the way home. At least with the Ativan I was out of it for a good part of the time.
To make matters worse, my old friend neutropenic fevers came back for a visit and both cycles were followed by hospital stays of five and then four days.
Naturally, a response from the tumor makes all this grief worthwhile. Unfortunately, a ct scan revealed no change in the size of my tumor and so we discontinued the cytoxin.
To be continued...
More chemo: Thiotepa and stem cell harvest
Once again, Dr. Sikov consulted with Dr. Kushner and this time they have decided to recommend thiotepa with stem cell rescue. This procedure was done under the direction of Dr. David Oblon at the Roger Williams Hospital Bone Marrow Unit in Providence, RI.
At this point in time my veins were pretty messed-up and Dr. Sikov a passport placed in my arm. Ironically, the people at Roger Williams wanted no part of my cute R-port - it was too small. Dr. Oblon ordered the placement of two central lines. For the next four or so months, these lines were accessed whenever I needed IV drugs or blood transfusions or even a simple blood test.
Stem cell harvesting involves getting hooked-up to a pheresis machine, which spins out the stem cells. The stem cells are collected and preserved for re-engraftment after high dose chemo. This allows the oncologist to push the envelope in terms of how large a dosage of chemo the patient can receive. With stem cell rescue, a dosage that compromises the bone marrow is given and then the re-introduction of stem cells "rescues" the marrow. This is rather like an autologous bone marrow transplant, only my procedure is done as an out patient. I imagine BMT people receive higher doses of chemo.
I'm also looked into the possibility of trying hyperthermia, but have decided against this for the time being. Hyperthermia is used to treat some cancers in Europe and Japan. The Europeans seem to prefer to induce fevers while the Japanese like to use a microwave device. The Washington Hospital Center recently (1996) imported such a device.
- Update 12/1/97
I thought I begin my update with some reflections on last year's stem cell procedure. First, as
you may note from reading above, I have had a fair amount of experience with chemotherapy - some
of this experience is with aggressive forms of chemo. Still, I found myself mentally unprepared for the difficulties of a bone marrow transplant.
Additionally, the maintaining my central lines (daily flushing and dressing changes every other day) proved time consuming and extremely wearying. I had two lines, each with two separate branches. This meant drawing up eight syringes everyday. The two pheresis lines received saline and one concentration of heparin, the two remaining lines received saline and a different concentration of heparin. This was easy enough when I was well, but it became a big deal when I was sick.
I also had to change two dressing sites on my chest, where the central lines tunneled up under the skin. The dressing change is a sterile procedure. The written directions run about ten pages. Once I became proficient at it I could change both dressings in about 15 to 20 minutes.
On days when I had to change my dressing and flush my lines I was spending about an hour maintaining my ports. When I was sick, these days became a big deal. I would wake up in the morning and plan my day around these procedures. I might, for instance, decided to load my syringes at 10:00am. Then rest until 11:00am and do the actual flushing. I'd likely put the dressing change off until after lunch.
I wasn't solely responsible for my lines. On many days I went back to the bone marrow unit for blood work and the nurses there would take care of me, some more willingly than others. I also had Paula, a visiting nurse who came in and helped out when I was especially weak. Paula also called the bone marrow unit and complained when one of the nurses sent me home after refusing to change my dressing ("she didn't have time and, after all, that's why they gave me that wonderful patient education session"). After Paula's call, I had no problems with Roger Williams.
I also had to begin a low microbal diet. No uncooked vegetables or salads. If we had a pot roast, my portion was served immediately and if we were planning on leftovers the extra pot roast had to be sliced and frozen immediately along with all the side dishes. Nothing could lie around on the sideboard where it might begin to grow bacteria. I avoided thin skinned fruits like apples and peaches, but could eat canned versions.
I've provided all this tedious detail because it's the type of information that is either omitted or glossed over when people discuss a bone marrow procedure with their physician. Today's reliance on outpatient procedures places a burden on patients that isn't clearly recognized, I believe.
- Thiotepa and Stem Cell Rescue
The plan was to do three cycles of thiotepa at roughly three week intervals, each cycle to be followed by stem cell rescue. The chemo was given at Roger Williams on an outpatient basis. I returned to the hospital every day for blood work and often for platelet or whole blood transfusions.
Despite large amounts of zofran and ativan I had a difficult time with nausea and vomiting. Spending so much time at home was a problem because my children, especially Jeff (age 7 at the time) witnessed the side-effects of the treatments.
I wasn't home for the entire cycle, however. I always managed to get admitted into the hospital with a neutropenic infection. The subsiding of my fever was a signal that severe diarrhea was about to begin. This lasted for a day or two and was both physically draining and rather embarrassing. This is the kind of diarrhea where they place a commode next to the bed so you won't have to walk the ten paces to the bathroom. Still, I didn't always make it to the commode either.
I have been told that I looked and acted quite depressed. My memory is very hazy because I was on 24 hour doses of ativan.
I was very weak by the end of the second cycle and, for the first time, I really considered ending a treatment early. I just didn't believe I could take another cycle. Dr. Oblon called a meeting that was attended by myself, my wife, my father, the staff shrink, and the case manager from my health insurance company.
At first, I suggested that the chemo dosage be lowered for the last cycle. For some reason, I had decided that I ought to receive a dosage of about 75% of what I had been getting. Dr. Oblon talked me out of this course of action using a nice folksy analogy. He noted that if we had a million dollars on the conference table and reduced it by 25%, we'd still have a lot of money on the table. The analogy was that even if we reduced my chemo by 25%, I'd still be getting an awful lot of chemo. He didn't think I'd notice any difference in side effects and we'd be giving the cancer a better chance. I found his argument convincing and we stayed with the full dose.
Next we discussed how difficult it was for me to begin the cycle as an outpatient. I found the distress of my son very disturbing and wanted to be out of sight when I was sick. I was spending most of the time home alone anyway, which isn't the way it's supposed to be done. But Rosemary had to get the kids off to school and daycare and then go to work.
The point was I didn't feel they were doing me any favors by sending me home. Fortunately, my HMO saw it the same way and I received permission to get admitted for the entire third cycle. This change in plan delayed the third cycle by a week. The bone marrow unit has only six beds and they were all scheduled for the first week in December. My father, for one, was very grateful for the delay. It was his opinion that I needed the additional week to get just a bit stronger.
The downside of the delay was that I would likely be in the hospital on Christmas day, but I was more than willing to accept the trade-off. As it worked out, I was released from the hospital around noon on Christmas day. My family had already left the state to visit relatives in Massachusetts, so I went to my father's apartment. I was very weak and tired and spent three or four days with him before returning home.
The physical effects of the treatment remained with me long after my discharge. My weight dropped to 110 pounds from 135 pounds. I believe I lost all my body fat and as it was the middle of winter the cold affected my terribly. I would put on a T-shirt, flannel shirt, and sweatshirt and sit wrapped in a blanket with the thermostat set in the high 60s - and I would shiver!
My skin, which had turned a deep brown in the hospital (they call it "bronzing") began to slough off. It got all over my clothes and in the tub. Removing a T-shirt precipitated of small "snow" shower.
Of course, I had no hair or eye lashes.
- Recent Events: Late fall, 1997
Over time, I began to regain much of my strength and stamina. I returned to teaching in the fall of 1997, albeit part-time and at a different school. I was feeling pretty good except for some occasional abdominal discomfort, which I was willing to attribute to diet.
In October I had a routine ct scan on a Wednesday. On Thursday afternoon the nurses reported that my scan was clean. However, when I awoke the next morning, I was quite jaundiced. An ultra sound revealed that the common bile duct, which leads from the liver to the small intestine, was being compressed from the outside. No evidence of tumor showed-up on the ultra sound.
I had a stent placed using an endoscope on the following Wednesday. The doctor could see that the duct was completely compressed, but there was no sign of tumor. Still, he is quite certain I had a recurrence. (We were still holding out for the possibility or scar tissue.) The stent took care of my jaundice for a couple of weeks until it apparently became infected and was replaced.
The next weeks were characterized by more than a little confusion and poor communication. Shortly after the placement of the second stent, I met with Dr. Sikov. It was still November and I expressed a desire to finish my teaching out the term. Sikov agreed and we made an appoint for December 10, 1997. Sikov believed I would require surgery to find the source of the compression and for the placement of a durable stent. I left his office expecting that he would line-up a surgeon and have a surgery date for me at our next meeting. I also told him about a sarcoma vaccine trial being conducted at the University of Michigan under the direction of Dr. Sondak. Sondak uses tumor samples to create his vaccine and I wanted my surgeon to touch base with Sondak and make arrangements for sending him samples.
In the meantime, I placed a call to Dr. Sugarbaker's office. His staff said that Sugarbaker would get in contact with Sikov. So I had many pokers in the old fire, as far as I was concerned.
December 10th finally rolled around and I went to my meeting with Dr. Sikov. The meeting did not go as I expected. After conferring with Sugarbaker, Sikov was no longer recommending surgery. According to Sugarbaker, as long as my stent was working, the risk of surgery was greater than its potential benefit. Sikov was willing to consider using more chemo, but debulking was no longer a viable option. Of course, this decision was tantamount to ruling out any chance at Sondak's vaccine therapy.
Naturally, I was very displeased with these recommendations. I told Sikov that I wanted to further explore the possibility of surgery and we set another appointment for January 5, 1998. Hopefully he'll have found someone local (perhaps Boston) who is willing to treat me. In the meantime, I spoke to Dr. Sugarbaker. He gave me a rather coherent and logical explanation for not proceeding with surgery. More importantly, he said he'd be willing to operate on me in the future, although he'd still prefer to avoid surgery altogether, if I built-up my strength through vigorous exercise and if I became more symptomatic.
And that, my friends, brings you up-to-date on my health. 12/29/97
To be continued...
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