The Cancer Story
Sandy says I should write down my experience with cancer.
The first vague hint that something might be wrong came in January 2010. I had been doing regular bike rides. As I got stronger, my speeds were gradually improving from an initial average of 15 mph for a 20 mile ride up to 17.6 mph. The speeds were remarkably consistent, within a few tenths of a MPH regardless of wind, weather or how good I felt that day. But in January, I noticed that my speeds had gradually dropped to around 16.5 mph. I felt fine, but was getting slower. After I mentioned my puzzlement to Mark Smith, I decided to at least get a panel of routine blood tests. They were all normal except for a fasting blood sugar of 120, which was higher than it had been. But there was nothing about that to say “cancer.”
In December of that year, I noticed I had been excessively thirsty for a few days now — I needed to keep a glass of water at my work station — and I was peeing like crazy. When I stopped to think about it, those were the hallmarks of diabetes. I checked my blood sugar. It was 300!
I called Dr. Millane for an appointment, but the soonest I could get in was in 6 weeks. I made the appointment and started oral medication on my own. I was slightly suspicious of pancreatic cancer now because there was absolutely no reason for me to have diabetes — no family history, no obesity. But it was just a thought.
The mainstay of treatment for pancreatic cancer is the Whipple surgery — pancreatoduodenectomy. My googling indicated that it would be insane to have a surgery this technical done by anyone who didn’t do at least 6 of them per year. There was an average 5% mortality just from the surgery itself. After asking around a little bit, I found out that Dr. Imagawa at UCIMC was the surgeon to see about this. Dr. Imagawa does 60 Whipples per year and doesn’t allow his patients to die. I got an appointment with Dr. Imagawa for February.
I gave notice at work. I was 64 years old. I thought, with luck, I might last 18 months, but might not live 6. So I had no plans to ever return to work.
In the meantime, I was now getting jaundiced, actually turning yellow, and I had intolerable itching. I needed to do something about that right away. I saw Dr. Kerekes, whom I knew, and had a stent put in, which relieves the biliary obstruction. The itching went away after a week or so.
When I saw Dr. Imagawa, he wanted to do his own CT (they always do), and that confirmed the diagnosis. Next he sent me to Dr. Lee for an ERCP and EUS. For this, he went down my throat with an endoscope, injected dye in the pancreatic duct (which connects to the biliary duct, then used a needle to do a biopsy. That confirmed adenocarcinoma of the pancreas.
Dr. Imagawa recommended that I join a clinical study he was part of. The protocol would be to give “neo-adjuvant” chemotherapy with gemcitabine and a new and promising drug called Tarceva for two months, wait a month, then do the Whipple surgery, then three more months of the same chemotherapy.
There was a holdup. My cancer extended a bit into the neck of the pancreas, but the study criteria specified cancer in the head of the pancreas. He needed an opinion from the chief investigator in Texas on whether or not I qualified for the study. He said he sent the CT scan and the clinical information and was awaiting a decision.
A week passed. Dr. Imagawa’s office told me that MD Anderson had not called back. I was getting anxious now to get going. I emailed the investigator at MD Anderson myself. He replied that he had never heard of me, but if I could send him all the clinical info, he would be happy to look at my case. The next day, I had an appointment with my oncologist, Dr. Seery. I told her, let’s screw the clinical study and just get going with the planned treatment, but off the study. I would pay for the Tarceva myself. That drug had been around for a while, but was not yet approved for treatment of pancreatic cancer, so it did not seem like insurance would pay for it. (Hence, going on the study, which would cover all medication costs.)
Dr. Seery agreed. She wrote the prescription, but the pharmacy refused to fill it because the cost would be about $20,000. They were not interested in my offer to write a check and insisted on submitting the prescription to my insurance company. To my amazement, they approved the treatment. And so we finally got going at the end of March.
Meanwhile, we had scheduled a pre-op family vacation at Yosemite in early June. For all I knew, this was the last time I would see these people. We invited my cousins, too. Marvin and David were able to come. But as soon as I finished the month of chemotherapy, Dr. Imagawa said, “OK, let’s get that thing out.” He intended to schedule the surgery for that week in early June. We asked to delay it a week, but he grumbled, “I’m going on vacation.” He couldn’t seem to process that we had plans of our own. But, no big deal, the surgery was scheduled for June 14, 2011. A CT scan before surgery showed the tumor had actually shrunk a bit.
Whipple surgery is fun. I was in the OR for 12 hours. This was my first surgery. I can tell you, anesthesia is probably like death. I remember utterly nothing, no dreams, no semi-lucid thoughts, until I suddenly came to in the recovery room with 8 tubes in my body. It was like an off switch had been flipped back on. I was not in pain, unless I coughed, but I was totally helpless.
A few days after the surgery, Dr. Imagawa, coming by on rounds, told me, “I have good news and I have bad news.” Just fucking great! “The good news is we removed the cancer, and there were no positive lymph nodes. The bad news is, we didn’t get it all. The margin of the resection was positive, meaning the cancer had spread beyond the pancreas, but had not metastasized. For that reason, he wanted me to get some radiation therapy in addition to the chemotherapy.
Here was the first bit of “good luck.” If I had been enrolled in the clinical study, I would not have gotten the radiation therapy because that was not part of the protocol. I’m not sure he would have even mentioned it to me. My recommendation: NEVER ENROLL IN A CLINICAL STUDY.
After 10 days in the hospital, I was eating a bit and most of the tubes had been withdrawn. I still had a feeding and drainage tube going through my abdominal wall into my stomach. This was to prevent vomiting and to infuse nutritional solution, not something I could manage on my own. So the decision was to send me to a nursing home for the next phase of my recovery.
The nursing home was intolerable. Everyone else there was elderly and demented. The staff was low level and had no idea what my gastric tube was for. They thought it was a Foley catheter for urine. The bed was lumpy. The staff insisted that everyone keep their TV on. I shared a bathroom with three other people, the type that has two doors. You can lock out the other door while you were in there, which is just what somebody in the other room did — 24 hours a day. Leo, my roommate, was completely demented and went “ahhh ahhh ahhh” day and night. The staff kept checking my ass for bed sores. This was just too scary and dehumanizing. Not where I belonged.
Sandy got on the phone to Debbie, who was between jobs, and she agreed to fly right out and take care of me. She was experienced with GE tubes, PICC lines, and everything else I needed. When I was ready to sign out of the nursing home the next morning, the staff could not find the doctor to order my release. When he still hadn’t returned the calls by early afternoon, I just left. They said they couldn’t release any of my medication, however.
The recovery went OK. Debbie was great. After 6 weeks, all the tubes were withdrawn, and I was ready to do the chemotherapy. That went OK, too. I didn’t lose my hair, I had no trouble with vomiting — it was pretty mild, except that the Tarceva caused a really nasty acne. Some doxycycline (an antibiotic) took care of that.
After a recovery period from the chemo, I did the radiation therapy. There was a newer technique, modulated 3-D radiotherapy, which was computer focussed on an exact but complex region of my pancreatic bed. The advantage of this is much less random tissue damage and fewer side effects. It was a lot more expensive than just blasting away. Again, the insurance surprised me by approving it. Of course, the reason it was approved was that the people who authorize it were in my own clinic. So I went in daily for a 15 minute treatment and noticed no side effects.
By now it was early 2012. Repeat scans were showing no spread of the cancer. I was left with an umbilical hernia from the surgery about the width of three fingers. If I strained, my guts popped out into the hernia, so I wore a compressive wrap.
Geoff and group were planning a 100 mile bike ride in the Moab, Utah White Rim Canyon area. You descended a couple thousand feet from the canyon rim, rode a more or less flat trail, then four days later, climbed back out of the canyon. The group had two support trucks with all the camping gear and food for about 20 people. I felt good and figured that, at worst, I would drive one of the trucks if the ride was too tough. It was a great trip, but I had two problems. After the Whipple, I could no longer digest fat. This caused a frequent, massive, foul diarrhea. Sometimes, I couldn’t wait for a toilet. This is more or less controlled with capsules of pancreatic enzymes, but at that time I was on too low a dose. So I wore Depends. Second problem, the hernia was really bugging me. I had no core strength at all.
When I got back, I saw Dr. Imagawa and, without, prompting, he said, “Let’s get that hernia fixed.” I spoke to Dr. Seery about this also. She obliquely hinted that I might want to have a plastic surgeon do the repair. Dr. Imagawa was not known for superb hernia repairs. Well, I didn’t care what it looked like. I wasn’t going to live more than a year anyway, so I told him to go ahead.
This was the second bit of “good luck.” When Dr. Imagawa opened up the hernia, he found two massess in it which were cancerous metastases. They had not shown up on CT, MRI or PET scans. If they had, he never would have done the surgery. And a plastic surgeon, when he saw that, would have just closed me up. But Dr. Imagawa removed the masses and did a full exploratory . He found no other spread of the cancer. He then sewed me up with some giant sutures rather than doing a full hernia repair with mesh and stuff.
Now it was time for full-blown nasty chemotherapy with a drug combination called FOLFIRINOX. I think the idea was to give me as much as I could stand. Four or five cycles into this, I could no longer ride my bike and, in fact, I was just able to lie around the house. My feet started getting numb. Most of my hair fell out. My white blood count and hemoglobin went down, down, down. I learned what all the nurses meant about “chemo brain”. I could barely think, music was irritating, reading was a waste of time, TV was incomprehensible. Dr. Seery reduced the treatment cycle to every 3 weeks instead of every 2 weeks, cut the dose 10% or so. Finally, after I think 15 cycles, she ended it. Scans were looking good. That was nice, but I didn’t much trust the scans.
My kidney function continued to worsen until it was Stage III (out of V, at which point you are on dialysis) by January, 2016. My kidney function was about 30%. My blood pressure took off, going as high as 190/100 and my hemoglobin was dropping down to 9.0. I didn’t have any specific symptoms. I just felt 90 years old, unable to mow the lawn or stay out of bed for more than 12 hours, no energy for anything.
I made it to 2014 before anything else showed up: at least two mets in my liver. Dr. Seery said that there were indications that a chemotherapy regimen with gemcitabine and cisplatinin was especially effective in people with my particular type of cancer. The main serious side effect was potential kidney damage. After a bunch of those treatments, my kidneys were indeed showing damage, so had to stop. The plan was to continue with an oral “PARP inhibitor,” a new drug which again was thought to be especially effective for cases similar to mine — at least if you had breast cancer. The only apparent negative is that it cost $130 per pill and you needed to take 12 a day.
We quit the PARP inhibitor. By the way, it works by interfering with natural DNA repair. Cancer starts from your own DNA. Cancer is more sensitive to this interference than normal tissue. Same theory as all chemotherapy. But it can cause anemia. Maybe it wasn’t good for my kidneys, either. No one was sure. I had also had had over 24 CT scans with contrast, which is damaging to the kidneys. From now on, no contrast agents.
The last scan showed that the liver mets had resolved. My kidney function improved a bit. As I have always done, I figure I’ll probably be alive in 6 months, but anything beyond that is not to be counted on. Dr. Seery offered to try me on Ritalin, and now I am starting to do a little more. Still, last year Brian and I walked 2 miles up a high mountain road. This year, I had to turn around after 100 yards.
I think it has been important to get treatment at an academic center where the doctors don’t just know a lot, they know everything. That is to say, they are not just experts, they are scholars. And they do not have the financial incentive private clinics do to treat me just because I came in the door or to treat me with whatever is the most profitable regimen. That’s the way to go.
So, I have passed the 5 year mark. Dr. Imagawa said his patients had about a 30% five year survival, although my chances would be a bit lower with a Stage IIb tumor.
I hand it to Dr. Seery. At no time was I “fighting cancer.” I just went along with the treatments she came up with, and they worked. There are side effects — numb feet, permanent weight loss, general weakness and muscle wasting, changes in how food tastes, loss of too much nerve control to play anything on the piano — and endless appointments. I have no long term plans, such as finally learning French. Picking up astrophotography was the one life-long dream that I felt I could handle. It is very expensive, but now I don’t care. I never for one moment since 2011 thought I might be cured. But as long as my body keeps going, so will I. And so it goes.
I tend more toward fatalism than hysteria. I recognize the urge to start this documentation project as similar to my dad’s feeling that he had to write an autobiography. It is not done just to organize one’s mind. There is also the strong feeling that everything I know and have learned will be lost, “like tears in the rain.” But whatever my personal attributes, this whole affair would have been intolerable without the support Sandy has given me. It is a wonderful feeling knowing that she will be all right after I die. Meanwhile, she has made it as painless as possible for me along the way. I’m very glad the kids have had time to get used to the idea that their dad is terminally ill. And our friends have come even closer to me. There is no sense of an elephant in the room, something they must shy away from. I appreciate that a lot. Realistic friendship is immeasurably better than false “I know you’re going to beat this,” efforts to deny reality and pump me up. Don’t do that to people with terminal cancer!
So what is it like sitting around waiting to get really sick and die? Not as bad as I would have thought. There are a lot of things I let go of. There are a lot of things I treasure even more. After 5 years, being on death’s door is a way of life.