I Am A Former Radiation Patient

In 2006, my mom noticed a strange lump on the side of my neck.  I went to see an ENT (an ear, nose, and throat doctor — but they call themselves otolaryngologists, because they went to a lot of school), and he took MRIs and CAT scans and whatever else, and the machines told him I had a cyst.  He removed it in February, and upon performing a biopsy, he discovered that rather than a cyst, he had actually removed a benign tumor, called a pleomorphic adenoma.  It was harmless, and it was removed, and life went on.

Until it came back.  I went back to the ENT every six months for a checkup, to make sure the tumor didn’t come back.  Well, this Spring, he was concerned that it had come back, and so he sent me to see a colleague.  The new ENT confirmed that the tumor had, in fact, come back, and would need to be removed again.  So, on July 18th, I had a second surgery to remove this tumor.

It is apparently very rare for this kind of tumor to come back; something like 1 in 20 do.  The theory is that since the first doctor didn’t remove the tumor the way you’d normally remove a tumor (since he thought it was a cyst), some of the cells spilled and replanted.  The second doctor, even though he was happy with how the tumor came out, was concerned about the same thing, since apparently you never really know what happened at a microscopic level, and maybe a couple of cells spilled out that he couldn’t see.  In addition, the tumor grew in such a way that it wrapped around an important facial nerve.  The second doctor was quite worried that this nerve might have been compromised during the surgery, and actually prepared me for that possibility.  Thankfully, he’s talented enough — or I’m young and healthy enough — that there were no such side effects.

Still, the possibility existed that this tumor might regrow, and the doctor was very concerned about having to go in a third time.  He essentially guaranteed that the facial nerve would be damaged if he had to operate again.  So, he strongly recommended radiation, and sent me to see his colleague.

To make a long story short, after talking with both ENTs, the radiation oncologist, and my dentist, there was no way to choose not to have the radiation.  The oncologist told me that the chances of the tumor coming back without radiation were 90%, but it’s more like 50% if I have the radiation.

So, on October 17th, I had my first radiation treatment.  I felt virtually nothing for the first two weeks, except that around the end of the second week, Jack brought a cold home from day care.  But I wasn’t better by Sunday night, so Carrie talked me into staying home that Monday to get better.  The thing about radiation treatments, though, is that the body has a lot of work to do to recover from them, and what seemed like “just a cold” wound up keeping me out of school for a week because I was too sick and too weak to work.  The cold actually got worse toward the end of the week, which is something I had never experienced before.

Monday of the fourth week, I went back to work, but by now the effects of the radiation had really started to take their toll.  I was unable to make it through an entire hour and fifteen minutes of class.  Thankfully that Tuesday was a day off, so I only had to make it through two more days, but that was enough, and I had to tell my chair that I needed some time off to recuperate.

It sounds like a dream to sit around at home for a few weeks while classes are going on, but I didn’t really get any time to enjoy it.  Mostly, I slept or got nauseous.  It became more difficult for me to eat or even to drink water, because I was sick so often.  What I didn’t realize is that I had become dehydrated, and that Friday (of week 4) I wound up in the emergency room to get rehydrated.

I’ve been doing a little better lately, especially since I now appreciate the need to eat and drink.  But today was my best day.  Radiation lasts for 30 sessions, which works out to six weeks.  The last session would have been this past Friday, except that the department was closed for Thanksgiving.  So, #30 should have been yesterday, except that the machine was down.  But, finally, this morning, I became a former radiation patient after treatment #30.

Among the paperwork the hospital sent me before starting treatment was this document, entitled “The Striking of the Gong”:

The completion of your radiation therapy treatments marks a milestone in your survivorship journey.  The staff of the Department of Radiation Medicine believes that this accomplishment should be acknowledged: One way is through the ceremonial playing of a gong.  On your last day of radiation treatment, you are welcome to strike the gong…  Traditionally, the touching of a gong is thought to bring strength and good fortune.

I would hear the gong being struck a couple times a week during my treatment visits, and it became something to look forward to.  Well, finally, today was gong day:

I still feel like crap, and it’ll be a while before I’m fully recovered.  One of the worst side effects, besides all the sleeping and nausea, is the change to my taste buds.  Many of my favorite foods taste wrong or bad because of the radiation.  I haven’t been able to eat any bread products or tomato products.  Ice cream tastes weird, as does anything with chocolate in it.  I recently tried pineapple, and it was almost completely devoid of taste.  They say that it will take about three weeks for taste to finally come back.  Until then, I have become a huge fan of the Food Network, planning what sort of wonderful things I’m going to eat when I’m able to.

Soon enough, I’ll be back to work, back to drinking coffee and beer, back to being awake 18 hours a day instead of sleeping 15 hours a day, back to playing on the floor with Jack — back to normal.  It’ll take some time, but I know that the recovery process started today.  I invite you to ask me anything you need to ask me about radiation, especially if you or a loved one needs to go through it.  It ends, and it gets better, and that’s the most important thing to understand.

Edited to add:  The treatments would not have gone nearly as well as they did if not for all the dedicated staff at LIJ who worked so hard to make me comfortable.  Special thanks go out to all the radiation techs (and of course I identified the musicians and the volunteer firefighter right away), to Nurse Diana, and to PA Jonathan.  No one in his right mind would classify radiation therapy as “easy”, but these professionals made it as easy a process as anyone could wish for.  Thanks.

One more edit:  While writing this post, I was so careful to get all the technical stuff right, like timelines and whatnot, that I forgot what was really important.  My wife Carrie and my mom both made huge sacrifices during these six weeks, to make sure I was eating and drinking, to make sure Jack got to day care and back, and to make sure I was comfortable.  They worked harder, and took better care of me, than I ever expected to need.  They were so awesome during this that their awesomeness became commonplace and expected, and I started to take it for granted.  Well, let me say here, publicly, that I truly would not have gotten through all this without their love and hard work.  I hope never to have to repay this debt.

Leave a Reply

You must be logged in to post a comment.