A patient who acts as his own physician has a fool for a patient. I had thirty years of clinical experience as a physician in my specialty of anesthesia. Fatigue of several months duration had concerned me, but not enough to act on promptly. This was my first act as a fool. I did not act appropriately. I diagnosed a gastrointestinal bleed. My stools tested positive for occult blood. They appeared black and tarry. Oral iron supplements were prescribed by me.
Following several weeks with no improvement in my energy level, I checked my hemoglobin level. It was half normal. This had happened to me twenty years before. Back then, a bleeding benign polyp was excised during a colonoscopy. At this point in time, the upper and lower examination demonstrated a cancer in my small intestine.
Emotionally, I was in a free fall. How could happen? I don’t have time for this. I’m superman—I can’t be sick. I’m a doctor, other people get sick and die, not me. During the two weeks I waited for surgical intervention, I deeply reflected on my situation, deliberated, pondered it and prayed. At length, I accepted God’s will for me.
I used my physician and his colleagues to find the doctors and hospital I would use. Much was said about how nice they were. I just wanted the best pair(s) of hands and set(s) of medically trained brains to care for me. Personality was of no import. They could be the worst sons of guns there were. I didn’t care. They were holding my life now.
I was informed by the departmental chief of surgery at a major medical school, that my surgeon was the best he had ever seen for my type of cancer surgery. I saw him in consultation. He reserved a spot in the schedule for me in two weeks if I wanted it. I would submit myself to a Whipple procedure. It is, next to an abdominal aortic aneurysm repair, the most extensive abdominal procedure, one could experience. The duodenal tumor in the small intestine would be resected, and any nodes and tissues in the area would be biopsied. Because the tumor was located near the Ampulla of Vater, the duct carrying bile from the gallbladder to the intestine, the gallbladder, its ducts and the pancreatic head would be excised. Potentially, the stomach and any other cancer-invaded tissues would be removed. Luckily, that was not necessary in my case.
My hemoglobin was half normal. I refused a blood transfusion. I exposed not only myself but put my surgeon and anesthesia care team at risk. I feared getting HIV. This was my second act as a fool. The risk was infinitesimally small. I was fixated on the transfusion/HIV relationship. My biased, but outdated information blinded me to the correct path. A fool’s fool lived here.
I survived the surgery. My anesthesia was excellent. It was a black sleep with no recall whatsoever. I woke up with an epidural in place and an IV infusion pump for pain therapy. My surgeon declared he was 99% certain he had resected the entire tumor and that I would do well. If he was God, he would guarantee it. If things went continued to go well for me, we would drink champagne in five years in his office.
Three days postoperatively, my heart rate soared. I read the EKG with the intern that night and happily saw no ischemic changes (no heart attack). I opted for the blood transfusion. My heart rate normalized. I went home in five later days to heal before beginning the next phase of my care two months later. Two errors on my part so far but no foul.
Adjunct chemotherapy and radiation therapy were recommended by my surgeon after I had undergone the Whipple procedure. This would be added insurance for me. Small intestine (duodenum) adenocarcinoma is a very rare cancer. Following surgical resection of the tumor, my chemotherapy/radiation treatment would be the same as in the more conventional colon cancer. Experience by oncologists with small intestine cancer is limited. No communication in the medical literature exists citing the best current treatment based on a larger number of cases.
The most peculiar thing was that all my doctors thought having a rare type of tumor was fascinating. I should feel privileged. I was not. Dying in a car accident, a plebian event, was just as unpleasant a thought as if I died from the rarest thing in the world. Like Marley, I was dead as a doornail either way.
Adjunctive therapy means extra or in addition to. Consultation revealed that I did not need radiation therapy. My doctor sought advice from two other colleagues from the US and Canada who agreed. He went over my pathology and prognosis with us and gave assurances, like my surgeon, that it was very good. We were very pleased with his efforts to get confirmation of his opinion. He took extra time to go over many things with us. As a physician myself, I knew he did not have to do all this. However, I felt he did this with all his patients. He was just that kind of person and doctor.
Chemotherapy was advised. The treatment protocol and possible consequences were discussed. I would undergo twelve cycles of FOLFOX6. This regimen was for large bowel cancer. It included intravenous infusions of oxaliplatin, 5 flourouracil (5FU)/leucovorin, a calcium/magnesium solution pre-therapy, and a 46 hour infusion of 5FU at home. I received decadron and an anti-nausea drug IV before each treatment. I was also started on Neulasta (pegfilgrastim) after 5 treatments to try to keep me on my every three week treatment schedule. My white cell count would markedly decrease and therapy would be postponed to avoid infection risks.
During course number seven, I had a non-productive cough during the treatment. Then during eight and nine, I had a cough again. I acted the fool again for not recognizing a serious sign of a problem. Who thinks much about a cough? I may have needed to clear my throat or something simple and benign. But it wasn’t that. It was an allergic response. Only 1% of patients got an allergic response to oxaliplatin. Lucky me.
But it wasn’t over yet.
In course number 10, I received ½ the dose of oxaliplatin when I started coughing and felt short of breath. I complained to the nurse. My oxygen saturation level was down to 92% from the pre-therapy level of 98%. Therapy was stopped and IV Benadryl was given to stop any further allergic reaction and oxygen administered for the breathlessness. I saw my physician again and was sent home. No further IV chemotherapy was planned. I would now switch to oral 5-FU and start the Xeloda (5-FU) tablets at home as soon as the pharmacy could get them in.
I started the Xeloda tablets in the early morning after several days waiting. No other problems remained from the IV infusion episode. I took a second dose and a third dose the following day. I woke up short of breath, breathing rapidly and coughing continuously. I looked like a boiled lobster with red patches and blotches everywhere. I itched. I scratched so deeply and so often that I bled from multiple sites over my legs, arms and chest. It was maddening. It was the weekend and I called my oncologist call coverage group and got no answer. I self medicated myself with oral Benadryl for several does with no relief. I heard nothing from the resident on call. I self medicated myself with oral prednisone. The fool acted wisely. The rash disappeared within 24 hours. The high dose prednisone regimen was continued. The resident finally returned my call after 24 hours. My coughing was worse and I was still short of breath. I slept sitting up.
I had subcutaneous and mediastinal emphysema in my neck area (free air under the skin coming from the chest cavity). Not good, but manageable with time. The air would be re-absorbed. I went to see my doctor 48 hours after this episode began. I was accused of self medicating myself—which I had---but she agreed to keep me on the high dose of prednisone—it was the right move--- and slowly wean me off of it. Bendryl was continued short term too.
My oxygen saturation was down. A 10% pneumothorax and signs of lung damage was observed on a chest X-ray. A CT scan of the chest one week later demonstrated an early, diffuse pulmonary interstitial pneumonitis mainly in the periphery of the lungs. A pneumomediastinum was observed. Blebs in the lungs had burst with the severe coughing fits and allowed the free air to gather in my lung area and air under the skin around my neck and chest. The free air would clear on its own. The pneumonitis was of major concern. Ten percent of patients with interstitial pneumonitis died. It could be progress to death. Lung damage could make one a pulmonary cripple. One per cent of people taking Xeloda tablets have a reaction. I was the one per cent responding to both of the chemo agents I had taken.
After a year, my pulmonary status has improved. I will soon celebrate a third year post-operatively. The diffusing capacity is still not returned to normal. The fibrotic damage in my lungs and blebs remain and are permanent. However, the impairment is stable. On the other hand, severe fatigue and extreme tiredness are constantly present. With any major exertion, shortness of breath is experienced. If I walk long distances or try to hurry, lift or carry anything, I get short of breath. This is an effective excuse for avoiding chores around the house. Finally, severe peripheral neuropathy in my hands and feet occurred. They are numb and I can’t always tell where my feet are. Neuropathy is another more common side effect for those who get these agents for chemotherapy. Supposedly it improves in two to three years, but not always.
Personally, this was the most important learning experience of my life. It was of course, life changing—and still is every day. Renewing bonds with my wife, children and new grandchildren is a continuing event. I have been given time to myself to think, plan and pray. I realized my mortality. I learned that people who have not faced a life threatening disease just don’t understand those of us who have, and they don’t yet understand life. Nothing is ever the same. To the healthy, life is still a bowl of cherries and will never end. They have not faced their mortality yet. They don’t really feel it can end. Until that gut wrenching fear of extinction is felt personally and is a reality, you haven’t been there.
I have always been a spiritual and prayerful person. Now, I stepped into a higher arena, and found peace for myself. I am retired and disabled due to this disease. No matter the final outcome, I can accept it. Thank God for the time I have had—and still have. It is a time of preparation. Time is more precious to me than to one who has not gone to the precipice and looked into the black.
From a medical standpoint, I acted the fool several times. I tried to tell my doctors what to do in a several situations. I would not have tolerated such input from a patient, but I was directing my therapy. Doctors are the experts, not the patient. This applies especially to a doctor who is a patient. A fool. The problem was that they assumed, as a physician, I knew all they did. This was a foolish error that doctor’s make when treating colleagues. I knew my specialty—even there I made a mistake out of my fear about blood—but I was not an expert in oncology, surgery or pulmonary medicine.
Patients err here too. They go to the internet or their non-medical friends for information and opinions. Many accept it over medical opinion. Personality becomes of overriding importance. I realize more than ever how I have to trust my doctor’s knowledge, skill and experience. Many patients continuously complain about their doctor’s bed side manner and lack of. Bedside manner does not save your life. You may feel warm and fuzzy and bond with your physician, but medical knowledge and skill is what will save you. I found the best doctor for the surgical procedure, oncology treatment and hospital. As they say, nice guys finish last. (My physicians were wonderful people; I do not imply anything negative about their bedside manners). It’s not a criterion for medical care that I use. Still, I treated myself because I could not get in touch with the doctor. No matter, a regular patient in my situation would just have gone to an ER for treatment. Human communication is always a problem in medicine.
I am happy to be alive and have time with my family. If you are also in this position, enjoy the gift God gives you: long or short. Find the best doctors you can on the basis of knowledge and skill and put you trust in them. Bedside manners are nice, but they don’t win the horserace. After three years, I am still running.