Back Story

In 1996 Howard and I lived in a house in Provo. Howard worked for Novell. Kiki was our only child and she was about 18 months old. For several months I’d casually noticed a lump under my chin. Since 6 months prior I’d had a blocked/infected salivary duct I assumed that it was related to that and not paid much attention. But I was planning to get pregnant again and on the advice of some family members I went to have it checked before I embarked on a new pregnancy. We only had one car at the time, so I got a friend to drive me 15 minutes to the doctor’s office. Kiki came along with us. The doctor looked at the lump agreed it shouldn’t be there and imediately called an ENT who agreed to see me right away. The ENT was in a different town, so we drove 20 more minutes to get there.

The ENT looked at the lump and was sufficiently alarmed that he sent me for an immediate CAT scan. Somewhere along the line I became alarmed at how quickly the medical establishment was moving. They only move fast if they feel it is really called for. The word no one was saying was “cancer.” Fortunately the CAT scan and biopsy did not seem to indicate cancer, but they couldn’t tell me for sure what the thing was until they removed it and sent it to a pathologist. Surgery was scheduled for only a week later. I wrote about that surgery last fall. I do not believe it is a coincidence that I felt moved to write about it near the aniversary of the event. The entry was previously marked private, I’ve recategorized it. You can read it here: http://www.livejournal.com/users/sandratayler/105283.html

I came out of the surgery experience and moved on to my intended pregnancy. In 1997 we had Link and were grateful that the tumor was taken care of. I recieved a pathology report in the mail, but hardly looked at it beyond seeing “benign.” It was a “lightening strike” type of tumor, not hereditary no one knows why some people get them. I’ve likened it to some kind of cosmic game of duck duck goose and it was my turn to be the goose. It didn’t seem fair, but it could have been much worse. At the one year post operative check-up (1998) all indications were that the thing was gone. Of course “all indications” meant that both I and the ENT had poked my chin with our fingers and not found anything lumpish. No CAT scan was performed at that time. Four months later food started getting caught in my mouth and my tounge simply wouldn’t reach to get it out. I suspected the tumor was back, but hoped it was just lingering trauma to the “tongue nerve” whatever that thing is called. After all, they’d had to scrape it to get all the tumor off and my speech was slurred for months afterwards. When I became sufficiently anxious, I made an appointment with my ENT and a CAT scan determined that the tumor had regrown. It probable started regrowing as soon as they were done removing most of it, but the “finger poke” test was insufficient to discover that.

Surgery was scheduled and performed. I wrote about it in the same entry referenced above. At the six-week post op appointment my ENT said: “We did our best and I think we got all of it. But that is what I thought the last time, so here is the number of a radiologist. You should go see him.” I thanked him, pocketed the number, and spent the next four months pretending that I didn’t have it. I did not want to do radiation. I wanted to be done. It was only when two completely unrelated people in two completely unrelated conversations told me that I should call the radiologist that I gave in and made an appointment.

He was actually a radiation oncologist. The minute I walked into the office I knew it was not a happy place. The air was filled with stress, no one in the waiting room was happy to be there. They weren’t angry, just …resigned. The physical exam that the doctor gave me was more thorough than any other physical check up I’ve ever recieved. I realized that this is a man who regularly deals with cancer and is used to weighing all kinds of factors to figure out where the monster might be lurking.

After the check-up he sat me down with a fat book of medical reports. He showed me half a dozen different studies that had been done about my particular type of rare tumor. Apparently grad students LIKE to study unusual things. All the case studies showed that “Desmoid Fibro Mytosis” was benign in that it did not metastisize. I would never end up with a baby tumor in my knee or spleen that had colonized from this one. (Cancerous tumors WILL colonize, that is why they kill.) BUT my tumor was also aggressive. This meant that unless absolutely all of it was removed it WOULD grow back. My surgeon had done his best, but the tumor was attached to the jawbone, several salivary ducts, and the huge nerve that runs to the tongue. Not to mention the fact that since this was a fibrous tumor it resembles scar tissue, which I had plenty of from the prior surgury. The salivary ducts were removed, but he declined to remove my ability to speak & eat by removing the nerve or a section of jaw bone. (For which I am VERY grateful.) This meant it was very likely that I had tumorous tissue left under my chin. Study after study showed that unradiated tumors came back, radiated tumors didn’t as often. (Doctors always hedge.) I really appreciated the doctor’s thoroughness and the fact that he showed me the studies, he handed me the book and let me read them. He informed me of a list of likely side effects of radiation, some of them permanent. He spent a very long and patient time with me while I faced all this information. Then I went home and talked with Howard.

We knew what had to be done and we scheduled the onset of radiation therapy for the end of January 1999 after priorly scheduled trip to Florida for a family event.