September 9, 2004
Hi, folks,
Please forgive me for informing you this way, but there are just too many phone calls to make and too many times to say the whole story.
I, Bill Stine, have cancer.
Sandy and I know you’d want to know so I’m using e-mail where I can. I’ve already informed lots of folks who want to be kept abreast of my situation so I’m doing my usual bit with a sort-of e-mail journal. The first part will bring you up-to-date. The second part is recent happenings.
We’re up-front and up-beat about this thing. Please try not to feel awkward about talking with either of us about it. I have excellent physicians and facilities right here in Lancaster. The treatment, while unpleasant, is just a process that I will go through. I’m looking forward to emerging in good health on the other end.
I discovered a lump on my throat, under my chin on the left side about the time Sandy and I returned to the US on our sailboat. As soon as we got back to Lancaster I had it looked at. I was quickly referred to Dr. Belser, Lancaster Otolaryngology (ear, nose & throat), who ordered a CAT scan of the area, suggested that it may be cancer and recommended that it be removed. He removed it and determined that the swollen lymph node was, indeed, cancerous; squamous cell type. He removed surrounding nodes and a couple of inches of my jugular vein that was involved with the enlarged lymph node (it’s OK, I’m fine with just one) and looked all around the inside of my neck which appeared to be clean. He closed me up and I healed quickly with a barely noticeable scar.
Unfortunately, squamous cell cancer doesn’t start in the lymph system. The cancer had already metastized from a primary cancer, presumably in the head or neck. It was hard to find, but it was finally revealed to likely be in the base of my tongue by a PET scan. Treatment is via radiation and chemo simultaneously.
What follows is the latest installment in the saga:
First, a sincere and humble word of thanks to all of you who have offered to help where they can, sent cards, called to wish me well and let me know that I’m in their thoughts and prayers. Sandy and I both sincerely appreciate your concern and wishes.
As to the update … in a word, “Progress!”
Since I last wrote most of you on August 23, this is what’s happened:
The location of my primary tumor was confirmed as well as it will ever be. It is embedded in the base of my tongue on the right side. The location was first identified by PET scan and confirmed by the asymmetrical appearance of the base of the tongue as observed via CAT scan and direct scope observation. The tumor is apparently buried in the tongue and was not noticed by direct observation or feel. Thanks goodness for the PET scan!
I met with my gastroenterologist, Dr. Parikh, about installation of a feeding tube, called a PEG (stands for Percutaneous Endoscopic Gastrostomy). In short, it’s a clear plastic tube that comes out through my abdomen from my stomach. I had it installed yesterday. A nurse will visit today to show me how to use and maintain it but it doesn’t seem too complicated. Just a weird sort of body piercing that will get me through the rough spots if/when my throat gets too sore to eat or drink from the radiation treatments.
Sandy and I met with Dr. Gottlieb to talk over the chemo plan. I will get weekly doses of a drug called Cisplaten. This drug has been shown to increase the effectiveness of radiation treatments.
I also visited the dentist. He provided me with special, high-fluoride toothpaste and created a set of trays that I will use for daily, self-administered, fluoride treatments. These will probably have to continue for the rest of my life. No one apparently knows what causes it but after radiation the saliva often loses its ability to protect teeth from decay.
Preparations for radiation treatment began on Aug. 27. Dr. Eshleman and the radiation team created the “mask” that will hold my head and shoulders in precisely the same position for each one of my 35 scheduled radiation treatments. (The mask is real torture apparel for a claustrophobic like me!) They then did a CAT scan with the mask in place to map the position of the structures of my neck relative to the mask. For the Intensity Modulated Radiation Therapy (IMRT) that I will receive, Dr. Eshleman then created a treatment plan using this CAT scan. He mapped the areas that should receive heavy radiation, like the tumor and lymph system, and the areas that should receive little radiation, like my spine and salivary glands. The physics group then created a series of radiation angles and intensities to achieve the treatment plan. This morning they put me into my mask and under the radiation beam and created a series of pictures of the treatment to verify that their computations are correct. (Yeah, you guessed it … I was locked in the mask for more than half an hour for that bit of photography. Ugh!)
Treatments are scheduled to begin Tuesday, Sept 14, and end Monday, Nov 1. I should feel OK for 2-3 weeks. After that the treatments will begin to take a toll on the mucous membranes of my mouth and throat and on the skin of my neck causing them to become sore. That’s when the tough part will begin. On the bright side, I probably won’t lose my hair. I may not have to shave, though, as the radiation will stunt the growth of my beard.
I’m anxious to get the treatments started and looking forward to coming out the other side!
Wish me luck!
Bill Stine