|David J. Denault,|
| Last Modified: November 1, 2001
Getting Diagnosed and Moving On
The Boston Red Sox are indirectly responsible for my diagnosisback in October of 1993. I was in the habit of falling asleeplistening to the baseball game on my headphones. Using the headphonesmeant lying on my back instead of my side, my usual sleepingposition. Sometime in August I began to experience some pain anddiscomfort in my abdomen while lying on my back. The pain wasn'tsevere, sometimes I had to sit up and watch TV for a while until itsubsided. I thought I might have the beginnings of an ulcer.
I decided to go to my HMO in the second week of September. Thenurse practitioner ordered an ultrasound that reveled an abnormalityon my pancreas. A follow-up CT scan showed a definite mass. At thetime, we were hopeful that it was a benign mass. I was on the youngside for pancreatic cancer and the position of the mass, on the headrather than the tail, made pancreatic cancer less likely.
My doctors decided that the mass had to come out and scheduled aWhipple procedure. After several delays caused by scheduling varioustests and illness on the part of the surgeon, I went into surgery onthe morning of October 15, 1993. The surgery was supposed to lastsomething like seven hours and I knew something was wrong when I wokeup in the recovery room a mere four hours after going under.
The surgeon found a tumor something between a golf ball and tennisball in size extending from my pancreas to my stomach and appearingto infiltrate both organs (this assumption turned out to beincorrect). She also found numerous metastases, small nodes seedingmy intestine, stomach, both omentums, diaphragm, aorta, andperitoneal wall. She decided the disease was unresectable, tooknumerous biopsies, and closed me up. I sometimes wonder about howmuch disease I would have had at diagnosis if not for the Boston RedSox.
The news that I had an inoperable cancer was pretty devastating. Iwas a 33 year old with a newly minted doctorate in economics, a newjob, 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 likeI had a "well-behaved" slow growing neuroendocratic cancer. Thisglimmer of hope vanished when the pathology came back and I wasdiagnosed with desmoplasticsmall round cell tumor (DSRCT).
DSRCT had only recently been classified as a separate cancer. Atthe time of my diagnosis, the entire medical literature consisted ofless than two dozen journal articles dating back to 1989. Themajority of the literature was devoted to the pathology of thedisease rather than its treatment. The articles that did covertreatment options were not encouraging. They described an aggressive,chemotherapyresistant cancer that usually resulted in death. My oncologist, toldme that, if I had a good response to my initial chemotherapy, I mightbe expected to survive for 20-24 months. Well, if you're newlydiagnosed and reading this you should know that: (1) I didn't have agood response to my first chemo, (2) I'm still going 49 months afterdiagnosis. I'm not disease free, but I'm still going.
To this day, I believe that the weeks immediately following mysurgery, but before I began chemo, were crucial to my developing a frame ofmind for dealing with the ups and downs that are part of livingwith cancer. First, I was fortunate to receive a copy of BernieSiegel's Peace, Love and Healing. This led me to one of his otherbooks, Love, Medicine and Miracles and from there I began to devoursimilar books by other authors. I got a lot out of these books inthose early days, not the least of which was an understanding thatmental attitude is as important for dealing with a chronic disease asany drug or therapy that a physician can prescribe. I decided tocultivate the right frame of mind. I also began to meditate and useguided imagery. The medical jury is still out regarding theeffectiveness of guided imagery, but I can say that I received ofsense of empowerment from going through the process, especially indays before my first chemo. It was good to do something that mightwork against the disease.
I also began to see a therapist. She helped me focus on living forthe present. The future will come to pass no matter what and I can'tchange that, but I can enjoy today and love my family today and livetoday - if I choose to. With her help, I came to understand that it'spossible to die of cancer long before you die of cancer.
At Martha's suggestion, I joined a supportgroup. I eventually left therapy, but I continue to meet ingroup. It has become an important part of my life (I'm now on theBoard of Directors) and is one of several positive forces in my lifethat developed after my diagnosis.
Tried two or three cycles of CAP, followed by a CT scan. Thesetreatments usually wiped me out for several days. Zofran andCompazine controlled the nausea. Unfortunately, there was no changein the size of the prominent tumor. My doctor wanted to change chemo,but I had learned about the work of another doctor who combinesaggressive surgery with intraperitoneal chemo. During a phoneconversation he indicated he was willing to try to treat me. I hadone more cycle of CAP (since the disease was stable) and then tooksix weeks off before surgery.
Surgery and Intraperitoneal Chemo
I had a 9 1/2 hour operation at on February 22, 1994. The doctorsfound 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 myabdomen. The resection required taking my gall bladder, bothomentums, and my appendix. One tumor had completely penetrated mydiaphragm. 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 thenthey began to introduce adriamycin (body temp.) once a day for fivedays. Each night a nurse would come and attempt to get my drains towork. They didn't. Then she would hook up a 1.5 liter bag to mycatheter and begin the lavage. Since nothing was coming out of mybody, the weight gain was pretty dramatic. Eventually, the bodyabsorbs all the stuff swishing around in the abdomen.
I was hospitalized for 22 days, a fairly fast discharge for thistype 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 hadsome degree of cramping and diarrhea for about 20 months. Thesesymptoms 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, theadriamycin treatments, etc. On the other hand, I was medicatedenough, especially in the beginning, so that the actual experiencewasn't that bad. It's worse anticipating the procedure and evenremembering it.
Five or six weeks after my return home I began follow-up chemo.This regimen was given in the hospital over four days. I'd usually goin on a Monday, receive the chemo Monday, Tuesday, and Wednesday, andthen receive fluids overnight. I was usually discharged before noonon the fourth day.
These were tiring treatments. First, staying in a hospital istakes a lot out of you. Because you're hooked up to an IV pole thereis a tendency to stay in bed and avoid even simple exercise likewalking. The hospital I was in has narrow corridors and is not walkerfriendly to begin with. And of course, the chemo takes something outof a person too.
Another problem that I ran into during these treatments for thefirst, but unfortunately not the last, time was neutropenic fevers.As my white blood cell count fell I developed fevers and spent timebetween chemo cycles hospitalized on antibiotics. After the secondhospitalization we decided to remove two impacted wisdom teeth, thesuspected source of my infections. This took care of the neutropenicfevers for the rest of the summer, but made for one especially roughcycle (chemo in the hospital, home for a week, neutropeniahospitalization, ORAL SURGERY, and, one week later, chemo).
I finished my fourth cycle of chemo during the beginning ofAugust, 1994 and went back to my teaching job at a local universityin September. The plan was to teach until the end of February ( wehave trimesters and our third term begins in March) and then go backfor a third look surgery. The plan was set aside when I developed anobstructed bowel late in October. Fortunately, the cause of theobstruction was an adhesion from the surgery and not more tumor. Atwenty minute operation took care of my problem and I was back on myfeet in time to begin our second term in December.
I went back to the hospital in March, 1995. The doctor performed asecond look surgery finding only two small nodes of disease (anpencil eraser in diameter) on my pancreas. He removed the nodes and Iwas once again clinically disease free. I left there somewhatencouraged. Back home, my doctor was more cautious. Yes, the volumeof disease was small, but six months after some pretty aggressivetreatment a surgeon had gone looking for cancer and found it. Thefact that my cancer returned so quickly was not an encouraging signin his opinion.
More Chemo Taxol and Carboplatin, followed by Adriamycin
Once again, my "summer vacation" became a chemo getaway. My doctorreasoned that taxol had a track record of getting a response in chemoresistant tumors and suggested we give it a try. I had four cycles oftaxol and carboplatin. I was thankful for the limited side-effects ofthis combination. There was little in the way of nausea - nothingthat couldn't be controlled by zofran. I had the "blahs" for a day ortwo but usually bounced back fast. The worst side affect was theaching feeling in my knees that would last a couple of days. Itwasn't painful, but I couldn't get comfortable.
In hindsight, I'm not sure the decision to use taxol was a goodone. The medical literature now reports a couple of cases wherepeople with evident disease received taxol and were taken off aftertwo cycles because of disease progression. Of course, we didn't knowthis 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 werestopping after only two cycles helped me get through it.
Once again, I returned to work in the fall. This time I was ableto teach two consecutive terms.
We scheduled my third operation with on March 13, 1996. I'm notall that superstitious, but in hindsight I wish I had chosen anotherdate! CT and MRI scans from January and February indicated thatsomething might be going on below my liver, so I wasn't too surprisedto by the outcome of this surgery. But I was deeply disappointed andmore than a little scared.
The surgeon found a tumor wrapped around my portal vein, extendingto my aorta. The tumor is essentially part of the vein and isn'tresectable.
High dose Cytoxan
I was sent home with a recommendation to try radiation, but afterconsulting with a radiation oncologist, we decided to try a cytoxanin a high dose (5 grams/m2). The plan was to do two cycles, get a CTscan, and if the tumor was responding, finish with a third cycle.
I completed two cycles of this treatment. I was treatedin-hospital for three days each time. Despite getting IV Zofran andAtivan, I experienced nausea during the first cycle and threw up inhospital and in the car on the way home. That was the first time Iever got sick during a treatment. I received extra Ativan during thesecond cycle, which helped quite a bit. I only threw up in the car onthe way home. At least with the Ativan I was out of it for a goodpart of the time.
To make matters worse, my old friend neutropenic fevers came backfor a visit and both cycles were followed by hospital stays of fiveand then four days.
Naturally, a response from the tumor makes all this griefworthwhile. Unfortunately, a CT scan revealed no change in the sizeof my tumor and so we discontinued the cytoxan.
More chemo Thiotepa and stem cell harvest
Once again, my doctors consulted with each other and this timethey have decided to recommend thiotepa with stem cell rescue. Thisprocedure was done.
At this point in time my veins were pretty messed-up and theyplaced a passport in my arm. Ironically, the people at the hospitalwanted no part of my cute R-port - it was too small. The physicianordered the placement of two central lines. For the next four or somonths, these lines were accessed whenever I needed IV drugs or bloodtransfusions or even a simple blood test.
Stem cell harvesting involves getting hooked-up to a pheresismachine, which spins out the stem cells. The stem cells are collectedand preserved for re-engraftment after high dose chemo. This allowsthe oncologist to push the envelope in terms of how large a dosage ofchemo the patient can receive. With stem cell rescue, a dosage thatcompromises the bone marrow is given and then the re-introduction ofstem cells "rescues" the marrow. This is rather like an autologousbone 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 isused to treat some cancers in Europe and Japan. The Europeans seem toprefer to induce fevers while the Japanese like to use a microwavedevice.
I thought I begin my update with some reflections on last year'sstem cell procedure. First, as you may note from reading above, Ihave had a fair amount of experience with chemotherapy - some of thisexperience is with aggressive forms of chemo. Still, I found myselfmentally unprepared for the difficulties of a bone marrow transplant.
Additionally, the maintaining my central lines (daily flushing anddressing changes every other day) proved time consuming and extremelywearying. I had two lines, each with two separate branches. Thismeant drawing up eight syringes everyday. The two pheresis linesreceived saline and one concentration of heparin, the two remaininglines received saline and a different concentration of heparin. Thiswas easy enough when I was well, but it became a big deal when I wassick.
I also had to change two dressing sites on my chest, where thecentral lines tunneled up under the skin. The dressing change is asterile procedure. The written directions run about ten pages. Once Ibecame proficient at it I could change both dressings in about 15 to20 minutes.
On days when I had to change my dressing and flush my lines I wasspending about an hour maintaining my ports. When I was sick, thesedays became a big deal. I would wake up in the morning and plan myday around these procedures. I might, for instance, decided to loadmy syringes at 10:00am. Then rest until 11:00am and do the actualflushing. I'd likely put the dressing change off until after lunch.
I wasn't solely responsible for my lines. On many days I went backto the bone marrow unit for blood work and the nurses there wouldtake care of me, some more willingly than others. I also had avisiting nurse who came in and helped out when I was especially weak.She also called the bone marrow unit and complained when one of thenurses sent me home after refusing to change my dressing ("she didn'thave time and, after all, that's why they gave me that wonderfulpatient education session"). After her call, I had no problems withthis.
I also had to begin a low microbal diet. No uncooked vegetables orsalads. If we had a pot roast, my portion was served immediately andif we were planning on leftovers the extra pot roast had to be slicedand frozen immediately along with all the side dishes. Nothing couldlie around on the sideboard where it might begin to grow bacteria. Iavoided thin skinned fruits like apples and peaches, but could eatcanned versions.
I've provided all this tedious detail because it's the type ofinformation that is either omitted or glossed over when peoplediscuss a bone marrow procedure with their physician. Today'sreliance on outpatient procedures places a burden on patients thatisn't clearly recognized, I believe.
Thiotepa and Stem Cell Rescue
The plan was to do three cycles of thiotepa at roughly three weekintervals, each cycle to be followed by stem cell rescue. The chemowas given on an outpatient basis. I returned to the hospital everyday for blood work and often for platelet or whole bloodtransfusions.
Despite large amounts of Zofran and Ativan I had a difficult timewith nausea and vomiting. Spending so much time at home was a problembecause my children, especially Jeff (age 7 at the time) witnessedthe side-effects of the treatments.
I wasn't home for the entire cycle, however. I always managed toget admitted into the hospital with a neutropenic infection. Thesubsiding of my fever was a signal that severe diarrhea was about tobegin. This lasted for a day or two and was both physically drainingand rather embarrassing. This is the kind of diarrhea where theyplace a commode next to the bed so you won't have to walk the tenpaces to the bathroom. Still, I didn't always make it to the commodeeither.
I have been told that I looked and acted quite depressed. Mymemory 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 firsttime, I really considered ending a treatment early. I just didn'tbelieve I could take another cycle. My doctor called a meeting thatwas attended by myself, my wife, my father, the staff shrink, and thecase manager from my health insurance company.
At first, I suggested that the chemo dosage be lowered for thelast cycle. For some reason, I had decided that I ought to receive adosage of about 75% of what I had been getting. My doctor talked meout of this course of action using a nice folksy analogy. He notedthat if we had a million dollars on the conference table and reducedit by 25%, we'd still have a lot of money on the table. The analogywas that even if we reduced my chemo by 25%, I'd still be getting anawful lot of chemo. He didn't think I'd notice any difference in sideeffects and we'd be giving the cancer a better chance. I found hisargument convincing and we stayed with the full dose.
Next we discussed how difficult it was for me to begin the cycleas an outpatient. I found the distress of my son very disturbing andwanted to be out of sight when I was sick. I was spending most of thetime 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 thengo to work.
The point was I didn't feel they were doing me any favors bysending me home. Fortunately, my HMO saw it the same way and Ireceived permission to get admitted for the entire third cycle. Thischange in plan delayed the third cycle by a week. The bone marrowunit has only six beds and they were all scheduled for the first weekin December. My father, for one, was very grateful for the delay. Itwas his opinion that I needed the additional week to get just a bitstronger.
The downside of the delay was that I would likely be in thehospital on Christmas day, but I was more than willing to accept thetrade-off. As it worked out, I was released from the hospital aroundnoon on Christmas day. My family had already left the state to visitrelatives in Massachusetts, so I went to my father's apartment. I wasvery weak and tired and spent three or four days with him beforereturning home.
The physical effects of the treatment remained with me long aftermy discharge. My weight dropped to 110 pounds from 135 pounds. Ibelieve I lost all my body fat and as it was the middle of winter thecold affected my terribly. I would put on a T-shirt, flannel shirt,and sweatshirt and sit wrapped in a blanket with the thermostat setin the high 60s - and I would shiver! My skin, which had turned adeep brown in the hospital (they call it "bronzing") began to sloughoff. It got all over my clothes and in the tub. Removing a T-shirtprecipitated 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. Ireturned to teaching in the fall of 1997, albeit part-time and at adifferent school. I was feeling pretty good except for someoccasional abdominal discomfort, which I was willing to attribute todiet.
In October I had a routine CT scan on a Wednesday. On Thursdayafternoon the nurses reported that my scan was clean. However, when Iawoke the next morning, I was quite jaundiced. An ultra soundrevealed that the common bile duct, which leads from the liver to thesmall intestine, was being compressed from the outside. No evidenceof tumor showed-up on the ultra sound.
I had a stent placed using an endoscope on the followingWednesday. The doctor could see that the duct was completelycompressed, but there was no sign of tumor. Still, he is quitecertain I had a recurrence. (We were still holding out for thepossibility or scar tissue.) The stent took care of my jaundice for acouple of weeks until it apparently became infected and was replaced.
The next weeks were characterized by more than a little confusionand poor communication. Shortly after the placement of the secondstent, I met with my doctor. It was still November and I expressed adesire to finish my teaching out the term. He agreed and we made anappointment for December 10, 1997. He believed I would requiresurgery to find the source of the compression and for the placementof a durable stent. I left his office expecting that he would line-upa surgeon and have a surgery date for me at our next meeting. I alsotold him about a sarcoma vaccine trial being conducted at anotherinstitution. This doctor uses tumor samples to create his vaccine andI wanted my surgeon to touch base with him and make arrangements forsending him samples.
In the meantime, I placed a call to my other physician's office.His staff said that they would be in contact. So I had many pokers inthe old fire, as far as I was concerned.
December 10th finally rolled around and I went to my meeting. Themeeting did not go as I expected. After conferring with the surgeon,he was no longer recommending surgery. According to the surgeon, aslong as my stent was working, the risk of surgery was greater thanits potential benefit. He was willing to consider using more chemo,but debulking was no longer a viable option. Of course, this decisionwas tantamount to ruling out any chance at the vaccine therapy.
Naturally, I was very displeased with these recommendations. Itold him that I wanted to further explore the possibility of surgeryand we set another appointment for January 5, 1998. Hopefully he'llhave found someone local who is willing to treat me. In the meantime,I spoke to my surgeon. He gave me a rather coherent and logicalexplanation for not proceeding with surgery. More importantly, hesaid he'd be willing to operate on me in the future, although he'dstill prefer to avoid surgery altogether, if I built-up my strengththrough vigorous exercise and if I became more symptomatic.
And that, my friends, brings you up-to-date on my health. 12/29/97