Daniel's Survivor Story
Ham causes cancer.
It’s a joke my wife Lisa and I share. It has nothing to do with anything you might have heard about ham’s nitrates, carcinogens, or anything like that. Let me explain. A few weeks before I was diagnosed with cancer—when my life was merrily moving along the way it does before one is struck by a terrible diagnosis—Lisa and I went to Costco. When we got home we unloaded our haul, but somehow missed the shrink rapped ham that had worked its way into the far reaches of our SUV. We discovered it the next morning, but since it was early February and rather cool, and the ham was cooked, cured and sealed … well, we ate it. A day or so later I still had mild abdominal discomfort and mentioned it to Lisa. She had the same discomfort, and so we blamed it on the ham.
A week and a half later though, I still had periods of abdominal discomfort, but Lisa was just fine. As the second week wore on, my diffuse abdominal pain became more focused and had settled into right lower quadrant pain. Being a physical therapist, and having a reasonably good understanding of how the body works, I thought it was my appendix, and that I would need to see my doctor.
On the morning of February 15, 2001 I saw my doctor who, in a matter of two to three minutes said I had acute appendicitis and would need to have an appendectomy. He was so sure of his diagnosis in fact, that he told me not to go home but rather to call my wife and have her meet me at the hospital. He would call the hospital and arrange the surgery. Now, I’ve worked in many hospitals, and had already had more than a decade of therapy under my belt, so the thought of a forty-five minute appendectomy seemed like no big deal.
The forty-five minute appendectomy turned into a two-and-a-half hour right hemicolectomy. It was cancer, and it was everywhere. The doctor told my wife—who was in the waiting room, frantic by now from the extended surgical time and the fact that my crabby 6 month old daughter was having a particular fussy moment—that I had cancer. It was stage IV adenocarcinoma of the appendix to be exact.
For me though everything was great. I was slowly crawling back to reality from a heady buzz. I remember looking down at my abdomen, covered in what seemed like three square feet of bandage and seventeen feet of tape. It seemed like a lot of bandage for an appendectomy, but who was I to complain, right? Besides, I was feeling so goooood.
The next morning, before my wife had a chance to make it to the hospital, the surgeon arrived at my hospital room. When he pulled out a chair to sit down, I joked to him that he must have brought bad news, because no doctor in his right mind sits down in a patient’s room, for fear they’ll get stuck answering a long list of questions. I’m certain he understood my joke, but his face didn’t show it. He proceeded to tell me I had cancer, and that I had about twelve to eighteen months to live.
When I got home from the hospital a week later, I hit the internet to learn all I could about my diagnosis. When I googled “appendix cancer,” the first entry I found was for Paul Sugarbaker, a surgeon in Washington DC who specializes in abdominal cancers.
So my wife and I hopped on a plane and flew to DC for a consult with Dr. Sugarbaker. He performed a physical exam and determined I was a candidate for his controversial and somewhat experimental surgery. We also went to the National Institutes of Health to see what they had to say. They offered a less aggressive 6 hour surgery than Sugarbaker’s 10 hour surgery, but since I was only 39 and had a wife and two kids, I decided to swing for the fence. Sugarbaker did emphasize that because of the aggressive nature of the surgery, I would need to get in the best shape possible before returning.
When we got home we made the necessary arrangements, and on August 1st 2001 we returned to DC for surgery and a one month hospital stay. The surgery turned out to be the easy part; I didn’t feel a thing. The days following surgery were hellish including the fifteen days without eating. I don’t remember having too much pain following surgery. I did have a PCA pump for pain medications but I only had it for a week or two before switching to oral pain medications.
It was a long post-op road for me. Although my pain was well managed during my post-op recovery, I remember not feeling well. I was incredibly weak, short tempered, bored out of my mind, and pretty scared. The surgery had in fact been very aggressive. Dr. Sugarbaker’s goal was to get to, or as close to zero remaining cancer cells as possible through the surgical process and aftercare. My gallbladder and spleen were removed. The greater and lesser omentum—a fatty blanket that sits behind the abdominal muscles to give guts some cushion—was removed. Twelve abdominal lymph nodes were removed, six of them positive. Since my appendix had burst before my first surgery, it had spilled tumor cells throughout my abdomen and many organs showed surface malignancies. So during surgery, my organs were manually scraped clean, removing these surface malignancies. The places where my colon was cut during the first surgery were freshly re-cut after my abdomen had been “cleaned.” A heated chemotherapy solution was poured into my abdomen, and for 90 minutes while under anesthesia, my organs were manipulated by the surgeons in order to distribute the chemo to all surfaces.
Thirty days after surgery, the day of my discharge, I couldn’t wait to go home. But I was in no way ready. I could barely eat regular food, I was still weak, and still scared of what to expect. With about a third of my large intestine remaining, my bowels were anything but predictable. The only real pain I had was in my rear, from the constant spasm, straining and wiping.
My strength slowly grew over the next few months and since I couldn’t stand watching the Price Is Right another day, I decided to return to work. Not too many months later, I developed a deep vein thrombosis and a pulmonary embolus. That got me a week in the hospital for heparin. After another month or so, I went back to work again. Since July of 2002, I haven’t missed a day of work due to cancer.
In March of 2006, a PET/CT scan revealed some activity in my right lung. A biopsy revealed adenocarcinoma—the same type I had with my appendix. It wasn’t in the lung though; it was on the outer surface of the lung in the pleural cavity. Although I could have undergone surgery again, UCLA surgeons recommended more chemotherapy, and told us that I could always have the surgery. That got me thirteen more months of IV chemo (CPT 11, 5FU, leukovorin and Avastin).
Since 2007, I have been taking Xeloda, an oral form of 5FU. More recently Avastin was restarted, by IV, every three weeks.
So I’m now just past nine years survival. I’m still working full time. My kids are 13 and 9. My wife’s still my cheerleader. I don’t have the strength or stamina I once did. Chronic diarrhea is and always will be a reality and a pain in the ass.
I’d like to say that my fear has passed. It hasn’t. As I approach a 10-year survival, a generous gift by any measure for someone with a stage IV diagnosis, I fear that I may be reaching the end. There is no rational basis for this thought of course, no table to draw from, no stats to check it against. It’s just a flare-up of that infamous sensation of “not knowing” that cancer survivors are forced to live with.
Appendix cancer may be so rare as to have little data to show the way for the newly diagnosed. The positive side to that is since no data is available to prove you wrong, your hope can be limitless.
Best of health,