I had a tumor removed from my tongue on May 11. About 40 minutes into the operation the surgeon came out of the operating room to tell my husband that they had found cancer and were going to “keep cutting until her margins are clear.” I left Mass General the next day with clear margins, a fair certainty there was no lymph node involvement, and a meeting set up with the tumor board.
I was cancer-free, but to minimize my chance of recurrence, it was decided that I would undergo 33 sessions of radiation. The day after we met with the tumor board, I opened up my Globe (still a subscriber) to read with a combination of shock, irony, and coincidence, that Sal DiMasi, the former speaker of the Massachusetts House of Representatives, had been diagnosed with the exact cancer as mine, while in federal prison.
I discussed DiMasi’s illness with friends and family, speculated on when and how he had found it (mine had been picked up by my dentist) and what sort of treatment he was receiving. We all assumed that he had already begun treatment, and I wrote him a letter asking if he could give me any “heads-up” or warnings of side effects to expect along my seven-week, 33-treatment journey.
I never sent the letter. I found out that DiMasi had barely had any treatment due to a delay in medical care while being retained in two correctional facilities, one in Kentucky and the other in New England. His medical testing for tongue cancer was delayed from December, when he first found the lump, until April, when he was finally seen by a doctor. She performed the tests and diagnosed him with squamous cell carcinoma of the tongue, same as mine. Only mine is stage 1-2. His is Stage 4. It has spread to his lymph nodes and possibly to his stomach, according to news reports. I wonder what role the delay in treatment had in the stage of his cancer.
As I labor radiation sessions each week day at Massachusetts General Hospital, I wonder how DiMasi has been doing with his treatments. I’m sure, like me, he has a treatment mask, custom-made for his face and neck from a hard plastic mesh. When I lie down, this mask is placed over my face and bolted to the table from the top of my head all around to my shoulders. A bite block is inserted into my mouth to prevent my tongue from being burned. I have to take an Ativan before each session to control my claustrophobia and anxiety. The fears of immobility and choking are real and constant and only barely kept in check by the medication and the constant encouragement of my radiation team. I wonder if the federal prison system allows DiMasi to receive a drug like Ativan. I cannot imagine — no, it would be impossible — to endure the daily routine of mask, mouthblock and beam without an anti-anxiety drug. I wonder if DiMasi has a radiation “team” to validate and ease his fears.
I wonder if the speaker has mouth sores yet. These are an inevitable side effect with head/neck radiation. I have compared them to having shingles inside my mouth. The sores are raw, hot and sensitive to any food, toothpaste, at times even water.
Has he met with a nutritionist to help him keep his weight on? It is hard to avoid rapid weight loss with this kind of cancer and treatment so my team has worked hard to come up with ideas and suggestions for me to eat comfortably while avoiding a drastic weight loss. I am weighed in once a week, and it’s the first time in my life when I am not excited to see the numbers go down. I will do anything to avoid a feeding tube. So my sister has made me home made chicken broth, my husband has found the protein shakes that I like the best and sometimes I can even get down some scrambled eggs and cream cheese. Does DiMasi have nutrition support and counseling?
I meet with my radiation oncology team once a week for counseling, to answer questions (there are always new questions) and to discuss what to expect as my treatment continues and what to expect when it ends. I have 11 more sessions out of 33. Each treatment is the hardest challenge I have ever faced and I have to face it 11 more times. But I am surrounded by support, by people who love me or people who are caring for me and want to help me get through this successfully. There are people in the treatment waiting room with whom you become friendly in a “we’re all in this together” kind of way.
A ship’s bell hangs on the wall near the waiting room. We all cheer and clap when someone rings this bell three times to signal that he or she has “graduated” from treatment. I dream about the day later this month when I’ll ring that bell. I wonder what Sal DiMasi is dreaming about these days.
Liz Kurkjian-Henry is a new teacher developer for the Boston Public Schools. She will return to her position in August.