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Editor’s note: Tony Lippers, Ken Day and Hector Babin share a mission. Tony, the deputy fire chief in Caledon, Ont., conquered esophageal cancer and is determined to create a mechanism to make the patient process easier for others.

Ken, the late chief in LaSalle, Ont., valiantly fought the colon cancer that stole his life last summer, but his message of self-care and advocacy survives.

And Hector, a carpenter and volunteer fire chief in tiny Eel Brook, N.S., perseveres as his cancer spreads, yet relentlessly preaches safety to firefighters along Nova Scotia’s Acadian shore.

Tony and Hector tell their stories, in their own words, to editor Laura King, while LaSalle’s new chief, Dave Sutton, speaks on behalf of Ken, his longtime friend and mentor.
 
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Caledon Deputy Fire Chief Tony Lippers is healthy after experiencing esophageal cancer and is poised to help others navigate the confusing and often overwhelming patient-care process.

Tony Lippers, deputy chief, Caledon, Ont.
I’ll take it from the start. I had complications in swallowing on April 15. On April 16, I had a gastroscope done in Chatham. They sent a biopsy away. About a week later it was confirmed that I had cancer, located in the esophagus.

So, I did a Form-6 here in Ontario, which is an injury or disease form, and submitted that to the WSIB [Workers Safety and Insurance Board] through the municipality. It took almost two-and-a-half months for them to process it.

Along with that, all your medical records and whatever else from the surgeon or general practitioner, the oncologist, all these entities – are all submitted to WSIB for their endorsement or denial.

I went through the [WSIB] process and was accepted, being under the presumptive legislation. I was told at that time from the adjudicator that my medical expenses would be covered to the age of 65 but no more, no less.

From that, I was put on a plan and referred to a surgeon. When I say plan – I mean I had to go through seven weeks of chemo and radiation to try to reduce the size of the mass or the cancer cells, if not eliminate them.

So, as I went through that process, which is not a fun process, not only on me as an individual, but also on my family because you’ve got to go [to hospital] every day, and, of course, it’s not cheap when you consider parking and loss of time at work, you know, if you’re self-employed, or if your significant other is self-employed, that can put a huge strain on an individual, and again, I’m lucky because a person in Windsor would have to travel two hours for this; I had to travel less than 40 minutes to the Southlake Regional Health Centre in Newmarket, and I had, in my opinion, one of the best surgeons and oncology doctors that was accessible to me.

So, after I’d gone through this process and myriad tests, the surgeon I had was so thorough he wanted to know after the chemo and radiation where it [the cancer] was, how big it was, and what it looked like, so that when I had the actual surgery they knew exactly what they were doing. So I commend them for doing the tests but I wasn’t prepared, or the expectation wasn’t that it would be that in depth.

I knew the oncology was not pleasant; but other than the basic orientation that they give you when you start, I wasn’t prepared. I had a chemo pump for five weeks, so it’s like carrying an umbilical cord with a 10-pound weight. So, when I say I wasn’t prepared for some things – the pump was one of them – and how sick I actually got. It seems like it gets worse before it gets better.

I had the surgery, which was a pretty major surgery in the context of things. I had complications. I was told these things could happen – but they did happen. So, in my case, I got blood clots in my lungs. Out of the 28 days I was in the hospital, 23 of them were in ICU. I came out, and here in Ontario they want you to be on your own – or in your own setting – as fast as possible, which is a good thing, but the support at home through St. Elizabeth home care – although it was good, it was not what I was offered in a hospital setting. There was nobody that you could go to and say, the surgeon told me that this was going to happen, and it’s not happening, so are you putting me at risk?

I didn’t know then – and it creates a bit of an unnerving situation, on the domestic side as well as the health side – I didn’t expect it to be this long. And I figured yes, it’s a major operation – they say a broken bone or things like that are six to eight weeks until you’re physically fit to do a firefighting job – in my case I’m not a first-level entity and I find it hard some days just to sit at this desk. They’re saying that possibly because of the clots, instead of being a six- to eight-week thing, it’s months.

In my case, I lost a lot of weight; they told me it would take almost a year to start to gain weight and it wouldn’t be much. As the surgeon said, the days of my 32-ounce Porterhouse are over! He refers to it as grazing. If you have anything to do with your digestive tract, it changes what you can consume, not just the amount. It’s a huge, huge transition.

Everybody’s different, but in my case stuff like gravy – I can’t digest. You don’t know what you can consume and what you can’t. The surgeon’s office or dietitian’s office will tell you – in my instance, for example, Doritos or nacho chips, no matter how much you chew them they still have sharp edges, so for a digestive tract that has been cut and severed, that’s not a good thing. But your body will tell you what you can and can’t have.

It changes everything – your lifestyle, diet. When I say diet I’m referring to your family – either you’re going to prepare yourself a different meal than the rest of your family or it’s all combined and everyone’s diet’s going to change. In some cases it’s a huge, significant change. And then again, it affects you, but it affects your immediate family. Everything that you go through in this process, if you don’t have the support, not only of the health-care practitioner, but your immediately family, it’s a long road.

So, I’ve had a couple of sit downs with the surgeons – in the broad sense. In the fire industry, one in three firefighting personnel, whether volunteer or career, will succumb to some sort of cancer, directly. Some will be more severe than others. Each one of us has a different makeup, so it will affect us differently, but it’s one in three.

In the general population, it’s one in eight. I asked him if he would be interested in taking this a step further – because I didn’t know what I was entitled to in presumptive legislation and how it related to our industry – my interest was to design a workshop in which you would get what the expectations are if you have cancer, and of course, in Ontario, the rules that go along with that, as well as the health-care side – what you can expect from a surgeon, a hospital, the business.

I was told by the surgeon [Dr. Julius Toth], that if I were to break my ankle or wrist or elbow, the assessment portion – the testing portion – could very well take anywhere from a year to 14 months – whether it’s physio or CAT scans. When you get cancer, you move right to the front of the line. So the system actually works in your favour; rather than wait weeks for tests, you wait days. That is one huge plus, because the name of the game is to get rid of whatever mass you have.

I can’t emphasize enough the physicals and testing for cancers related to the fire field. So get tested once a year. I was between stage two and stage three when I was diagnosed. If you catch it at stage one, it’s not as severe or lengthy a process. I have been cut open pretty good – that may have not been the case if it was stage one.

The next steps? I have to, I guess, create a business case. I am going to forward it to my provincial body to maybe do a workshop from the firefighter or fire-service side, and then the medical side.

And I asked the surgeon if he would be part of that and he said by all means. The surgeon had explained everything to the T. That’s one thing that put not only me but my family at ease as to the procedure – why I’m doing tests, what the outcome of the tests are – not the results but why you’re doing the tests, what the expectations were, the pros the cons. He made us feel a part of the process.

The process with chemo and radiation – for me it was seven weeks. And then you have gestation period. Your hemoglobin is low . . . they can’t operate on you within this period of time. For me that was five weeks. So from the time it started on April 15 to surgery on Aug. 16, and 28 days later I was released from the hospital to home, and from that point to now I’m about 1,000 per cent better.

[Dr. Toth] guided the process – I’m sure he has influence in the process because he has his own ward at the hospital – but there’s no stone unturned. And he told me that the sooner you start this process the better off you are. He also told me that cancer – it doesn’t matter what type you have – loves sugar. So, some of the tests I had – after he told me this all made sense. It’s like Pac Man – it doesn’t matter whether it’s the lymph nodes or the cells – they give you a CT scan and the CT scan has glucose with a dye, and they have a thing called a PET scan, where they introduce vitamin C into your body and take another picture, and they have an internal ultrasound (gastroscope) – so all three of these are like overheads, they put them all over each other – and because cancer loves sugar, they just pop. When they did me, they did me head to toe because they had to determine whether the cancer had spread. Before they did this it was explained to me, so I knew why I was having these tests. I think I’ve had until now eight gastroscopes.

The quality of care I got, in my opinion, was top. What I propose to do – I didn’t know what the expectations were; not medical expectations, because obviously the way they do prostate cancer is different than what I had done. But how it should come together. I went through the WSIB but I was unsure how that system worked; I was unsure how oncology worked. I was unsure of this world that I was entering. I have never been sick before, so my exposure to the emergency room or to a surgical arena – I had never been, other than as a first responder when you package a patient and are doing CPR on the way to the hospital and doing patient transfer. I didn’t know. I think everybody goes through the same thing that I did but no one talks about it.

I thought that a couple of months and I’d be back to the swing of things but that’s not the way it is.

The procedure I went through – I had an incision in the front and one in the back. Because the mass wasn’t as big as what was anticipated there were no sutures in the neck. They collapsed the lung and did the whole procedure through the ribcage. I have staples on the inside and sutures on the outside. There were nine tubes out of my body and there was more discomfort than pain, but I was on a drip for quite a while as well as another drug. I was treated quite well. In the ICU, there’s a nurse for every patient – it’s one on one. When I went to Dr. Toth’s ward, it was one nurse for every three. Generally it’s one for 10, one for 12. So, on the treatment side and on the medical side, I think that not just because I was in the fire industry, because people come from all walks of life, I was treated great with pretty much every medical advance known. The system worked for me really well.

So, getting back to the next steps. What I’m proposing to do is, whether it’s a provincial entity or a national entity, not to have a database but to have somewhere to go so you can say, ‘I’ve just been diagnosed and what are my next steps?’ To my knowledge, there is nothing like that and it’s kind of a bitter pill to swallow when both the chiefs and the firefighters association sat on the working group to create the presumptive legislation. Again, every case is different but there have to be some consistencies to the process.

I phoned [the Ontario Association of Fire Chiefs] and of course there was nothing available. But you have the Ken Days, right. I knew Ken, but I had no idea what he went though or what his family went through. I’m fortunate, so far, that I’m clean.

Ken had complications. I can understand people keeping it to themselves because it’s a very personal thing, but I’ve been in this business for 28 years and in the fire service, generally, they pack together and offer their assistance in any way or means, it’s just that this is one of the occasions where you’re looking for some assistance about expectation, and there isn’t any. Yet I know that the chiefs and firefighters associations sat on committees and my assumption is that they know what the expectations should be – or somebody does, so I’m researching that and am hopefully going to put something together for everybody.

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Dave Sutton, fire chief, LaSalle, Ont., on behalf of Ken Day
I was obviously very close with Ken, and being colon cancer, he had many of those issues – the unknowns. His wife had graduated as a pharmacy assistant, so that helped, especially early on with the apprehension and scariness of the unknown, the doctor-speak and referrals among the specialists and surgeons. He felt left out and felt that he wasn’t getting proper explanations.

As fire chief, there’s the whole personal dignity issue – everyone wanted to come in and see him. He found it all very difficult and being such a gregarious people person, it was difficult all the way.

The late Ken Day (front), who was the fire chief in LaSalle, Ont., died in July at just 47, of complications from colon cancer. Like Tony Lippers, Day struggled to understand the patient-care process and wanted to ensure that firefighters heed the need for self-advocacy.

One of the other issues that was so difficult was that he was always in control and always the guy who makes things better; in this instance, there was a total lack of control and information, so Ken was out of his element and that was every difficult and frustrating on a psychological level on top of the medical issues and diagnosis. Here’s a guy who’s on top of his game and in control, and at this point he lost all control and had no background information and in the initial stages, that made it that much more difficult.

Getting information out there to the fire service – we’re pretty protocol driven and to have the information in terms that firefighters can handle and in an accessible format that is familiar to us . . . that would be ideal.

For Ken, the colon issue started as it does with a lot of folks, experiencing bleeding and whatnot, back in spring of 2010. Initially it was kind of downplayed by the doctor; he was having some bleeding, they thought it was probably a little tear – something minor – and they gave him some medication to relax the bowel.

For several weeks it wasn’t a big deal and they said it should heal on its own. Then they did a colonoscopy and found the cancer. They started him on a fairly aggressive round of chemo and radiation to shrink the tumour through the summer. He came back to work part time for a couple of weeks before his major surgery in November and in the interim they found a tumour in the kidney as well. The surgery was to remove the one kidney completely and a section of the colon. Consequently, there were some complications of surgery – they nicked something in the urinary tract – so that complicated the recovery, but the prognosis was positive and the six-month checkup was good and everybody believed all along that he was on the road to recovery.

At around the end of May – for a month or so things weren’t going right – and at the end of May or early June he got the terminal diagnosis, and I really think some of the issues he had with healing with the urinary tract made it difficult for them to find the recurrence of the cancer. He was told the cancer was back with a vengeance. He was readmitted about a month prior and he passed away on July 29.

I think, particularly in his case – he was a very young guy, just 47 when he passed away – most of these screenings for normal, healthy folks who aren’t predisposed to some of these recognized cancers that firefighters are – start at age 50. With the health-care system, the doctors are reluctant to do the tests. Ken’s thing was that no matter what age you are, educate yourself about what you are predisposed to and get tested. As great as the medical system is, they aren’t knowledgeable about firefighter issues and we have to advocate for ourselves about the known cancers and we have to accept responsibility ourselves and get pre-screened.

That was really the focus of his concern. That, and, just general lifestyle issues: take responsibility for your own health and recognize the dangers of the job. There’s been a lot of research out there – by union and chiefs associations – but it’s up to us to take advantage of what’s available.

As in Tony’s example, the process side worked very well. There was a good rapport with WSIB as well. But on the medical side, not so much. There was a lot of indecision and unknown. Communication with the patient was one thing but communication among the specialists and the flow of information wasn’t the greatest. It was difficult to navigate.

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Hector Babin, fire chief, Eel Brook and Districts, N.S.
For me, it started in September 2008. I was on a job site and bled through my rectum. It was a tumour and was at stage two. I had no symptoms at all, or so I thought. But after all this I found out there had been symptoms – I had been tired – I thought it was my age but it was a symptom. People don‘t realize it – but the doctor told me I should have been checked 10 years before.

After I bled, I ended up going to a specialist in Halifax and he told me that I would have a stoma [colostomy] bag – for life. And I think I was more scared of my stoma bag than the cancer; I fainted at the time.

Volunteer Fire Chief Hector Babin of Eel Brook, N.S., is relentlessly positive in his pitch for firefighter safety despite his cancer diagnosis.

I was being treated for hemorrhoids – wasn’t bleeding a lot. This was in March or April, and my specialist in April said any time you are bleeding you should see a specialist. I was operated on in October of 2008; there were no problems. In January 2009 I ended up going to Halifax for radiation, for six weeks. It’s worse than a sunburn – very painful; the last week I could hardly walk. It was best just to lay flat. I passed through that and in July, when the Maritime chiefs convention was in Pictou County, I got a call from the doctor and he told me I had spots in my lungs. And I asked why, and he said there’s a .001 per cent chance that the stuff will travel and settle somewhere else in your body, and that’s what happened to me. Chemo started in August 2009, and stopped in March. And I’ll tell you this, I just found out that the spots have grown a bit, and I start back on chemo again next week. I’ll start Monday – then I sleep Monday and Tuesday. Wednesday they disconnect me – I have a chemo bottle that takes 48 hours to go through my body. And by Friday I’m back to new again.

[As for line of duty], I can’t say yes or no. We used to walk around after the house fire was out, walk inside investigating, and apparently now they’ve found out that that’s the worst. You swallow it; it’s in your nose. How can you prove it now?

My insurance through the Fire Services Association of Nova Scotia (FSANS) would have paid me $2,000 if I had applied within a year – so now I’m not eligible. Even if you’re in a career department there’s a window during which you have to apply. The reason we don’t have compensation as volunteers is that it costs so bloody much. We pay $3,600 a year for my department through FSANS.

After the last 15 or 20 years, they want you to wear your air pack when you’re overhauling or investigating and wait until the smoke clears. And now fire marshals will not come to your site for 24 hours and a lot of time they’ll wear masks. So now you’re wondering, what did I do wrong for the last 20 years? You swallow a little smoke and back then it was nothing, and now it’s all occupational health and safety.

It’s all about education. I’ve learned it since my sickness – because of my sickness, I have been talking to all my departments in the Municipality of Argyle and I will talk to Yarmouth too – I was just elected president of the Argyle Municipal Firefighters Association – and my topic is safety, training and liability. And it all comes together. If you’re not trained, you’re not going to do it safely; if you’re not trained, you’re not going to be reliable. So I tell them, wear your air pack, wear your seatbelt in the truck. Take the extra four minutes to assess the situation. Take your time – look at the big picture. It’s finally trickling down.

I take it one day at a time. I have two families – my daughter, my son and my wife, and my sisters and brothers-in-law. And then I have the firefighting family. I’m so attached to my fire department that I go talk to one of my members – my deputy chief – and I asked him to tell my firefighters what’s going on, about the stuff in my lungs. They know if I don’t show up that I’m not feeling good. It goes up and down, but what keeps me going, a lot of it is the fire service – seeing the young guys move in. We just had an election of officers and I had two younger guys become captains – and they are all gung ho, and it makes me feel good that I can go and do what I need to do for myself.

We had a page that a carbon monoxide detector went off and I’m 15 minutes away from my department and I just made one phone call and I knew they knew what they were dong – you’ve got to have confidence in your firefighters. It’s been very challenging for me but, thank God, I have a lot of friends.

I have mornings when I get up and bring my dogs in, and I look at Facebook and sometimes I see that a firefighter lost his life and I just cry – when they die doing things that can be prevented. It has to stop. And it’s all because of training. Yes, I’m sick, and it might take my life or it might not. But when you have an accident at a fire scene or because you’re not wearing your seatbelt, that kills me, because I know it can be prevented.