Backstory (Long Catch Up Post)

This is the sort of blog that nobody really ever wants to start. A cancer blog. An "I've got cancer" blog, where you document your battle with a very deadly disease. All the same, having found out that I have cancer, I learned just how much and how many people love and care about me. I think a blog is a great way to tie myself into the support of amazing people. Just as importantly, I've done a lot of web searching to learn more about other people's struggles since I've been diagnosed. Even the scary ones gave me a sense of comfort. I hope that someone else who goes through this later is able to derive some comfort and useful information from my situation. To that end, I'll try to be very honest . . . no sugar-coating, but no building anything up either. I want to share an honest account of this fight.

I'm also going to try to begin all of my posts with a quote. They will probably be all over the map, but hopefully tie in some way to the post. Sometimes they'll just be quotes that amuse me. Today's quote comes from Catherine of Siena, a Catholic saint who lived in the 14th century.

"To a brave man, good and bad luck are like his left and right hand. He uses both."

So how does my cancer story begin?

The last friday of June 2007, I was at Kristina's house and her sister Deanna and her boyfriend Mike were visiting. I found myself very tired and rundown, with my eyes and nose a little watery. Honestly, it felt like every cold I've ever had in my life. Especially because I'd been in a tiny conference room across from a guy who had a nasty cold the day before, I assumed I caught his cold.

The next morning, I woke up and saw swelling on the right side of my neck. Just below my ear and a couple inches long. It hadn't been there the night before.

My mom Linda is a Registered Nurse, and I decided to call her to ask about it. I tried to describe the lump and noted my cold. Just like every time I've called my mom with an ailment, she told me to go to the doctor. She said it could be an infected gland from my cold or even mono.

Surprisingly, I actually made an appointment to see the doctor later that week. Dr. Donna Ott in Warminster. She checked me out, and agreed to try antibiotics for a week. She forced me to make an appointment for a week later if it was not gone.

After a week of antibiotics, the lump remained. I found myself fatigued, but the swelling on my neck was not painful and it wasn't growing. I studied a million possible ailments on WebMd and those sorts of sites. Was it Cat Scratch Fever? A viral infection? Mono seemed really likely. Well, I went back to see Doctor Ott, and she suggested bloodwork, a biopsy and a CT scan. This really shocked me. The whole time I was thinking mono at the worst. I agreed to a blood test for starters to rule out mono.

I went for my blood test for mono and about 6 other things. It's odd to find yourself hoping you have mono, but that's where I was. When the results came back, I found out that I did not have mono. My blood counts seemed normal, my cholesterol was great (surprisingly), and all of my other tests came back good. I figured if I had cancer, it would have showed in the blood test. I had no idea.

My doctor then suggested that we move on with a CT scan, which I got right away. It told us little. There were three swollen lymph nodes on the right side of my neck. The largest was about 4cm. There appeared to be a "slight asymmetry" in the right side of my nasopharynx. What the hell is a nasopharynx?

At this point Dr. Ott admitted that she was out of her league and had me see a surgeon who would take a biopsy of the lymph nodes to test for cancer. Even still, I thought there had to be another explanation for this. I'd never smoked, there was no history of cancer in my family, and I was only 37. Cancer?

All the same, I started learning about every variety of head and neck cancer under the sun, as well as lung cancer. Chilling statistics, dreadful tests and treatments, and all that sort of thing. When I met with my surgeon, I asked him if this could be a reaction to a viral infection and he soberly told me "I'm afraid not." At this point, I could find no other possible explanation for the swollen nodes on my neck, and well before we went for the biopsy at the end of July, I already knew in my heart that I had some sort of cancer.

The biopsy procedure was a little more involved than I'd thought. I had it done at the local hospital in Warminster. Friends in medicine (Kevin, Mom, even a person at Penn's cancer team) had advised that taking tissue samples and having a pathologist read them could be done by anyone. So, I went in for out-patient surgery with my brother Mike and my wife Shelly. They were a great comfort during the surgery. The doctor took a portion of one of my lymph nodes and excised another entirely. What really sucked was that he told us it would take 10 -14 days for results.

During this long wait, it became very difficult not to dwell. I spent a lot of time researching cancer and through a friend of Kristina's a Radiation Oncology Nurse named Marshall, I began to make preparations should I get confirmation of cancer.

About 10 days in, I got a call from my surgeon. Over the phone he told me that I had cancer. I wondered if it was thyroid (90-95% survival rate when caught early) or non-Hodgkins lymphoma (60% survival). He said it was a squamous cell of the head/neck and with neck lymph node involvement that meant Stage IV (the most advanced) and survival rates closer to 20-30%. That was very heavy news to get over the phone.

I shared the news with my circle of loved ones, who all told me they knew I was a fighter filled with fury and that whatever the odds were, they knew that I would beat the cancer. All the same, I heard fear in their voices and saw pity and hurt in their eyes. It was easy to see they were scared. I was, too. Scared but upbeat and determined to win.

Quickly we moved to get in to see people at Penn. I got my slides and CT scan films, and doctor's notes sent over to UPenn through Marshall. The team there conferred and Dr. Voika Bar Ad scheduled an appointment to see me. She examined me carefully and used a flexible scope to check out the inside of my oral cavity and throat. She seemed fixated on my right tonsil. All the same, she really impressed me. She was very professional and from day one I could see she was very committed to me. I can still say with all the doctors I've seen, she is the one who impresses me most. She pulled out all the stops and got me appointments with Dr. Gregory Weinstein, a heavy hitter in the Head/Neck cancer world and an excellent surgeon. She also set me up with Dr. Kendra Schaeffer, a dentist, and Dr. Eric Sherman, a Medical Oncologist (chemo doc).

She called me several times in between meetings and impressed me more and more with her attitude, professionalism and sense of concern.

Dr. Weinstein met with me. He is an expert in much demand. While he was meeting with me, he was called out of the room three times for other patient emergencies. One lucky patient got to hear him say magic words "You do not have cancer." I saw her face across the hall when he delivered the news. I was so happy for her that I forgot about myself for a moment. Dr. Weinstein confirmed my cancer diagnosis and took a quick look in my throat and nose. He noted that we would need to do a PET/CT scan and a biopsy, as well as have a PEG tube installed for feeding. These were standard procedures at UPenn's Cancer Center for Head & Neck cancers. Shelly and Mike had come along, and Shelly described Dr. Weinstein best. "He doesn't like to lose." He assured me and Shelly that he would get me better.

I met with Dr. Schaeffer who took x-rays of my teeth and molds for fluoride trays. The good news was that my teeth were in great shape and would not require any extractions. She was very upbeat and said she'd seen a lot of patients come through and the ones who did well were the ones surrounded by loved ones and young and upbeat like me. My brother and Kristina had come along, and I really appreciated it.

There was a lot of trouble with scheduling my CT/PET scan at Penn. They also had equipment problems which were not helpful. My PET test was not a great experience, but fortunately the results that came back were. Dr. Weinstein had said there were three things we could hope for with the PET test. #1: Nothing would light up on the PET test below the collar bones. #2: Only a single place other than the neck lymph nodes would light up. #3: If we were really lucky, only the lymph nodes would light up. Well, a lot of prayers paid off, because #1 and #3 was what we got! My lymph nodes aside there was little evidence that I had cancer.

By this time, it was the end of August and I went in to have my PEG tube installed and for my blind biopsy of my tonsil (including a right tonsillectomy), nasopharynx, base of tongue, and pyriform. The surgery was not bad, but I woke with sore ribs/stomach from having my stomach ballooned up for the insertion of the PEG tube. My throat was sore in a few places from the biopsy too. Pain medication and ice chips helped keep my pain down to 3 or 4 on a scale of 10 in those places. After a while, I was released.

The PEG tube part of the equation was really not that bad. I had to learn to flush the tube, and get used to having a piece of plastic hanging out of me. The pain was gone within a day or two. It was the sore throat and not being able to eat for a few days that was a bigger issue. I drank fluids and had jello, yogurt and pudding for the first day or so. Soon after I started eating buttery rice and canned peaches and pears. It took about a week before I could stop taking pain medication, but every day I was eating more and more. Pizza, cheesesteak, and so forth. By day 8 or 9, I was a little sore but back to my old eating habits and I could talk again.

I got back to Dr. Weinstein who confirmed that I had nasopharyngeal cancer. A very small tumor and one of the non-keratinizing variety that really responds well to radiation. He stated that my chances of recovery were good and that my treatment would probably consist of radiation and chemo alone. Probably no need for surgery. He said he'd see me in January as my treatments wrapped up.

I went back to radiation and had a clear mask made for my radiation treatments. They made markings so they could begin designing my radiation treatments. Dr. Bar Ad was very clear about what we knew, and she said she was working to cure me. She was very clear about these treatments and that she expected me to get well.

My chemo doctor experience was no fun at all. The guy is Dr. Jared Weiss and there were administrative problems at Penn that meant he was 90-minutes late in seeing me. He works directly under Dr. Eric Sherman, another big hitter. They have a very straightforward protocol for chemo on nasopharynx cancer. Every 3 weeks, I'll receive an injection of medicines including the primary cancer-fighting drug Cisplatin beginning with the first morning I go for radiation. This is for three sessions (Week 1, 4, 7). After my radiation concludes, there will be another series of three sessions with Cisplatin and 5FU. The good news here is that he told me that I should not lose my hair and that pharmaceutical advances and my age/health could make my side effects a lot milder than many patients. There were some possible scary side effects, but none sounded worse than the alternative (death) and most were real low percentages.

So, as it stands now. I'm all set to begin chemotherapy at 7.30am on September 25. Later that day at 2.30pm I have radiation treatment scheduled. The first of 35 (or so) daily sessions of IMRT radition to my neck and nasopharynx.

This is a very long post. Most won't be anywhere near this long, but I was playing a lot of catch up. If you're a newly diagnosed cancer patient, my advice to you is to feel what you need to feel. Ride the rollercoaster, but surround yourself with friends, loved ones, and appreciate life. It's a frightening time, and it's important to breathe in the life around. Laugh, love and live!