‘I was told it would rapidly go downhill. And it did’
What the hell is that?”
Sitting having lunch with a group of co-workers just before Cup Match, I leant on my hand and felt a bump on the right side of my neck. While conversation carried on around me, I then checked the other side and then back and forth.
“Feel this,” I finally asked one co-worker. After looking at me strangely she did and confirmed that yes it was a bump. The consensus of the group was: don't worry and jump to conclusions before you get it checked out. It could just be an infection.
But I knew. This was a tumour.
However, I waited over Cup Match to see if in fact the bump did go down.
My GP Dr Gordon Campbell on Monday morning asked if the bump hurt and I replied no — that I only discovered it by accident. In fact, I didn't know how long it had been there. Once I discovered it, I could clearly see the bump as could other people when it was pointed out to them. Like most men, I rarely notice anything different about my body until it hurts. Women are far more attuned to what is happening to their bodies.
The fact that it didn't hurt was not good news. If it had hurt it could have been an infection.
Within days I had an ultrasound and had seen ear, nose and throat specialist Dr Wesley Miller who found that my right tonsil was swollen. “I want you at Lahey Clinic as soon as possible,” he said.
A few days later, I was being examined at Lahey in Burlington outside of Boston.
Friends in Bermuda pointed out how great it was that I was sent to Lahey so quickly to which I responded: “No it's not. There's a reason why this has gone so quickly.”
Surgeon Dr Bharat Yarlagadda, from the Otolaryngology/Head and Neck Surgery unit at Lahey, took a biopsy and confirmed that I did indeed have a malignant tumour on my right tonsil and the side of my neck.
“I suppose it is from smoking,” I said to him. (I am 62 and have smoked my entire life).
“No. It is from HPV,” he replied.
What on earth is HPV? I had never heard of it.
HPV is short for Human Papillomavirus and can cause numerous cancers including cervical cancer and cancer in the back of the throat, including the base of the tongue and tonsils (called oropharyngeal cancer).
The cancer often takes years, even decades, to develop after a person gets HPV.
Actor and Bermuda resident Michael Douglas was struck with oropharyngeal cancer about seven years ago and has since recovered.
Dr Yarlagadda said a team of people at Lahey had been looking into my case and I would meet with them the next day.
That meeting was overwhelming.
In walked Dr Yarlagadda, Dr Francis W. Nugent from the Hematology and Oncology department, radiation oncologist Dr Howard C. Hsu, as well as physical and speech therapists, a dietitian, a nurse navigator to help me keep my appointments in order, a social worker in case I was feeling anxious and upset and a radiation oncology nurse.
I felt like I had my own Swat team — and in a way I had. They would be with me through the two months of treatment, some more so than others but always there when I needed them.
Treatment for cancer patients are all different to some extent. Some may just have surgery, others only chemotherapy, others just radiation while others yet will get chemotherapy and radiation at the same time.
It was decided that I would get the full bout of radiation of seven weeks as well as chemotherapy once a week.
“This is going to get very unpleasant,” advised one of the doctors.
He said I would be initially surprised by the fact that I wouldn't feel any adverse affects during the first week or ten days of treatment.
Then it would rapidly go downhill.
And it certainly did.
The lift off was easy and smooth, the landing was very, very hard.
By the end of the treatment in mid-October I just wanted to crawl into a corner of my hotel room and die. Although the pain in my throat was harsh, it was the feeling that radiation and chemotherapy had conspired to poison me. And in fact I had been poisoned.
But even before treatment began I was surprised to hear I had to visit a dentist so that any suspect teeth could be removed before radiation started.
A shock was in store when I was informed that five teeth had to be removed. Five! All in one go.
The teeth were removed one morning and that afternoon, with my mouth constantly bleeding, I had my “Hannibal Lector” mask fitted.
After I kept apologising for all the blood leaking from my mouth while carrying a bunches of bloody tissues, one of the nurses finally said: “Mr Hunter, you do know you are in a hospital, right?”
For people receiving radiation therapy to the head or neck, a special mesh mask, known as a thermoplastic mask, is often used. It is moulded (it feels like it is melted) to your face and secured to the table to hold your head in place. The effect can be very claustrophobic. Once I was locked down on the table I started breathing very fast. Thankfully radiation treatment takes only ten to 15 minutes every day and after a while it becomes easier. You don't ever get used to it but you become prepared for that locked down feeling every day.
Some patients naturally feel anxious when they need to lie still in such an immobilising device and often medication is prescribed to help them relax.
But before my radiation and chemotherapy treatment started I had to get a PET (positron emission tomography) scan so the doctors can see how the cancer metabolises, and whether it has spread, or metastasised, to new areas.
By this time I had moved into a long-stay hotel, the Sonesta ES Suites, a short drive from Lahey.
It is not unusual to have a “Little Italy” or a “Chinatown” in various cities. Well the Sonesta ES Suites could be called “Little Bermuda”.
Every day I saw more and more Bermudians staying there with their loved ones who were getting treatment at Lahey. Some I knew quite well, others I recognised in that Bermudian way and others I got to know. It was amazing the numbers of Bermudians getting treatment for various causes. And that's just at Lahey never mind the other hospitals in the “world's medical capital” — Mass General, Brigham and Women, Dana Farber, Beth Israel, Tufts and Boston Children's Hospital are among some of them.
Often the Sonesta courtesy van was filled with just Bermudians going to Lahey or to the nearby Burlington Mall, which I think Bermudians must have built with all the money they have spent there. Bermudians love to shop, sick or not. And the courtesy van's driver, Puerto Rican-born Freddy, knew so many Bermudians he has visited the island a number of times staying with locals he has met over the years.
The main doctor who I talked to every week, Dr Nugent who was in charge of my chemotherapy, was, like the other medical professionals at Lahey, a caring and honest man.
However, doctors only tell you so much voluntarily. “But I will never lie to you if you ask a question,” he told me, adding that many patients don't want to know everything when they have cancer.
But of course I wanted to know and I asked questions.
What's my chances of living?
Dr Nugent answered: “We don't like to give odds on things like that.” Doctors are not in the gambling business it seems.
Then I asked what stage of cancer I had and he said: “Stage 4A.”
That knocked me back. With many Stage 4 cancers there is not much the medical profession can do. It is pretty well the end of the road but Dr Nugent assured me that with HPV cancer that was not the case — they can successfully treat stage 4A.
But then I wondered: What the hell happened to Stages 1, 2 and 3?
After various meetings with therapists and doctors my first radiation and chemo treatment started on August 23.
And right as rain, I felt fine until September 2 when my taste buds disappeared followed shortly by extreme pain in my throat which made eating food pretty well impossible. I hate it how doctors are always right.
But as Dr Nugent explained: “This isn't our first rodeo.”
Everything the doctors said would happen did happen right on schedule.
At first I thought radiation would not be a problem. A good friend of mine had radiation to successfully treat prostate cancer, only getting a little dry mouth in the process.
As it turned out getting radiation directly to the throat is vicious. My radiation doctor said it is the worst place to get radiation.
One of the first things I decided when it became apparent I had cancer and would have to go through treatment was: I am not going to feel sorry for myself. Just suck it up and get on with it.
And after meeting Malinda Binns [formerly O'Connor] who was undergoing treatment at Lahey for cancer I was even more determined to put a positive face on what I was going through.
Malinda, who died late last year, had endured 12 horrible months of cancer treatment including highly invasive surgery, radiation and chemotherapy. She was diagnosed with melanoma of the sinuses, cancer in the kidney and brain cancer. She underwent skin grafts, multiple surgeries including the removal of her right eye, as well as debilitating radiation and chemotherapy.
Throughout all of this, Malinda had remained in great spirits and was cheerful whenever she got in the Sonesta van to go to Lahey — a trip I shared with her.
She made me feel humble.
Malinda left Lahey after doctors said there was nothing more they could do for her and she moved to the end-of-life care facility Agape House where she passed away.
Unfortunately her family are struggling to pay her crippling medical bills.
There is always someone worse off than you and it pays to recognise that.
Most patients staying at the Sonesta had family members with them. I was by myself although my brother often visited as did some friends. But I made it known that, except for my brother, I didn't want to see anyone once the treatment got nasty. After all, who wants to see someone throwing up all of the time, coughing up ridiculously thick mucus and be quite frankly in a terrible state.
I certainly didn't want anyone to see me like that.
When I got to Lahey I weighed 160 pounds: not a lot since I have been skinny all of my life.
When I stopped eating because of the treatment I started to lose weight — and they weigh you all of the time. Every time they put me on the scales I saw the needle drop. In the back of my mind I was thinking: I have to stop losing weight because I am not getting a feeding tube put in my stomach.
My weight loss started to become dramatic and concerning to the doctors and nurses, so much so that I contemplated on cheating.
At the hotel you bought rolls of quarters for the washing machine and dryer. One day I was about to put some of those rolls in my pocket to “up my weight” when I stepped on the scales.
And then I thought: I can't be doing this!
By this time I was surviving on drinking Boost which is like Ensure. It was a liquid diet like no other.
When even drinking Boost started to become impossible I finally admitted I needed a feeding tube — halfway through my seven-week treatment schedule.
Right before getting the feeding tube in I was in a bad way, physically and a little psychologically.
Going into my weekly chemo session the nurses noted this. I told them I felt I was not being strong enough and was letting them down.
They soon straightened me out. “Do you have any idea what this chemotherapy and radiation is doing to you?” one of them said before assuring me I was doing fine. It helped to hear that because doubts creep in about whether you are being tough enough.
In the end I weighed 130 pounds. I still do.
Although some cancer patients like me don't want family and friends around them all of the time that doesn't mean they don't want any contact with those family and friends whether it be by phone, e-mail, messaging or whatever.
It is important for patients to know people are thinking of them and hearing from them will raise their spirits. It doesn't have to be a long conversation but to use that well-worn phrase: “It's the thought that counts.”
In fact I heard from friends not only in Bermuda but also from Canada, Britain, the US and Australia — some of those friends I hadn't heard from for years but they managed to reach out and it does make a difference. And you don't always have to talk about the treatment. Any old gossip will do. I had many conversations about football.
At the beginning of my treatment a good friend said he would come up with other mates and take me to a Bruce Springsteen concert in Foxborough, the home of the New England Patriots.
It all sounded great then as I was feeling great. But by the time he and two other mates arrived there was no way I could handle a four-hour show from Springsteen. His shows are exhausting when one is raring to go never mind when you are fatigued and feeling dreadful.
So I urged them to go without me and I was probably asleep by the time the Boss hit his first note. Oh well, next time.
One of the most heart-warming gestures came from a friend's four-year-old son. As my friend was in the drugstore in Bermuda picking up a get-well card for me, his son suddenly came up to him carrying all sorts of medication he had grabbed up in the aisles.
“What are you doing with all that?” he asked, to which the little tyke replied: “They're for Kyle to make him better.”
Priceless. Thank you Rowan!
In the end he sent me a toy helicopter which is proudly displayed on my mantelpiece.