Kip's Story: Cancer and the Workplace

Recorded February 27, 2002

Listen With 19 minutes, 56 seconds.

Username: Thriver

Go to Thriver's personal Web page

Diagnosis: Chronic Myelogenous Leukemia

My name is Kip. I am 48 years old. I am divorced, although I have a girlfriend now. I have two children. They are now ages 14 and 11.

My story starts in 1996 when I was diagnosed with chronic myelogenous leukemia, CML. If you don't know much about leukemia, there are many different types and they are very different in terms of how dangerous they are and how quickly you have to be treated.

The way I was diagnosed is interesting. I really didn't have many of the typical symptoms, but I was always very active athletically and over the course of a couple of months when I had been running for a long time, I just got slower and slower. Finally, I just figured I must have mono or something. I went in and had a blood test and that caught it. So there is a lesson there. The doctor said I was very lucky that I was active or it might have been a lot longer before I caught it. It was very easy to diagnose. They do a blood test, and with CML there is a special chromosome that they can prove they know what it is. The problem was, at the time I had been laid off. I have an MBA, I had a senior management position and I was on almost a yearlong severance package when this happened. My immediate concern was will I be able to find a job? I'm going to have to keep this a secret and is it even legal to go ahead and take a job knowing you have cancer? I immediately called a lawyer and I found out not only is it legal, but her quote was, "You'll have the most safe job, secure job in the world." I knew that, because as a manager I had been through a lot of training about discriminating against people for any variety of reasons including health.

I actually had the blood test results come in while I was away in Boston accepting a new job. My poor wife didn't want to tell me over the phone what the blood test results were, so she had to spend the night alone, knowing that there was a 99% chance I had leukemia. I went ahead and took the job and had to commute back and forth between Boston and Pennsylvania for several months while keeping this a secret from just about everybody because I was so worried if he heard about it. My lawyer said he will fire you and claim some crazy reason for letting you go because I can't prove that he knew I had cancer. It was good that I had contacted a lawyer. She held my hand, gave me a lot of advice, told me to keep a diary, and much to my amazement she said, "You will have to tell him at some point, obviously, but first you want to show that you can do the job."

I did the job very well, but to make a long story short, when I told him he had an extremely negative reaction, which is the last thing you need when you're staring leukemia in the face. At this point I knew I was going to have a bone marrow transplant about nine months after my diagnosis. After he calmed down we talked again, and he actually admitted that he would have done the same thing I did, which was go ahead and take the first job you can find, because my first concern was to get employed so that I had a place to go back to, even though I did have health benefits through COBRA. That wasn't as much of a concern.

Cancer Patients and Careers

I will also mention that a week before that incident there appeared a story, a cover story, in the Boston Globe, where a study had been done that revealed cancer patients were losing their jobs at five times the rate of people without cancer. They said most cases that have been brought under the ADA Act, the Americans with Disabilities Act, had been settled out of court in favor of the patient. But the big problem this created was, what do you tell future employers when you're faced with a job search, especially if you had a long absence? Some people get treated for their disease without long absences, but in my case it was six months before I even went into the hospital after being fired, and then my doctor said most bone marrow transplant patients have to spend a year in isolation, disabled.

So after losing my job--and this was one of the first thoughts that occurred to me when I was originally diagnosed was; this is going to hurt my career one way or another. That is really what I'm going to spend most of the rest of my time talking about. Not so much my treatment, but what it's done to me surviving because; to make a long story short, I did well on the bone marrow transplant. I had a serious unknown complication after the transplant that required another five or six weeks of very expensive treatment, but they finally fixed the problem. I bring this up because I think my bill was somewhere between six and seven hundred thousand dollars. To jump to my conclusion for a second, I'm not so sure that society--if they looked at what it's done to my life, losing my job and really not being able to return to my career--I wonder if society doesn't need to think a little bit about how they look at cancer patients.

Treating Yourself by Fighting Hard

Just to touch briefly on my treatment, my first thought was when I was diagnosed, I think it's a good test of how you've lived your life, that I had been very fortunate, had a great life. My main concern was for my wife and kids. The next thing I found out, within a couple days, was the importance of your attitude in fighting this. I was very fortunate that somebody literally just happened to hand me one of Bernie Segal's books--most people know him. He's one of the early mind-body guru doctors. An ex-cancer surgeon, and his message basically is not only is it okay to fight your disease no matter how serious it is, but there is growing evidence all the time that your attitude can actually affect the outcome. Because I think most patients feel, are they being told things that aren't true and being told the rosy side of the story, and who can I believe? He basically gave me a way to think about this, which was I'm going to fight as hard as I can.

I got through the transplant. A year later, as what happens with most bone marrow transplant patients, after a year they basically declare you cured, and one silver lining about leukemia is it does not spread or metastasize the way most other cancers do. So if the transplant works and your new immune system is holding any leftover cancer at bay, after a year they say you are basically home free. If your new immune system isn't working, most patients relapse within a year. So after a year he said, "You can get on with your life." Most of the people close to me said, "Wow! You've been through such an amazing thing. You're such a hero in so many ways," because only about 60% of people in my situation that went through what I went through even survive the transplant.

Cancer On Your Resume

I went out into the world and I started my job search. In some cases people knew about my health history because I was networking with people who knew me and in some cases they didn't. I actually did a lot of the search online, posting a resume online where employers can contact you and because I started having trouble getting a job from anyone, I decided to try a little experiment. For a while I listed a resume where I made up and actually lied about the two years I was out being treated and just said I was consulting. I got a fair number of inquiries when I did that. And then I switched over and told the truth and made a short statement that I had been disabled and treated and cured; with that resume out there I got literally no inquiries.

More important than that, after about a year I went to some very senior-level networking meetings and these are senior-level people--only vice-president level and above. Basically you sit around tables with about ten other people and everyone shares their resume and talks for a few minutes. I handed out my resume that revealed my cancer history. [laughs] I'll never forget, one woman who had worked in human resources her whole career at very senior levels with Fortune 100 companies said, "My God, don't ever put that on your resume!" Everyone at the table agreed.

I said, "Well, if I put I was consulting on there, in my career that's looked at as you weren't able to find a real job." I said, "People will think I'm an unemployed bum." And I'll never forget her words to me, which were, "Better an unemployed bum than a sick unemployed bum." Everyone at the table nodded.

That really set me back and started me thinking. I had come out of this thing so strong and was getting back in very good shape. I've always been a runner and a biker, and I was back doing that even better than I had before I was diagnosed. So I finally did get some jobs. None of them lasted very long. Most of them were people who knew me and wanted to give me a break, but after a couple of years of that again, in my career it's pretty obvious no matter how I account for that time, something happened and I had some kind of a train wreck. To this day when I interview with people and ask them afterwards why I wasn't hired, I can tell they sense that. I went to one of the top undergraduate colleges in the country and one of the top business schools. When you go from top-name companies where I worked, like Pepsi and Lennox, to no-name companies, people sense something's wrong.

Hiring Cancer Survivors: Changing the Norm

My real passion in life--when people say, "What do you want to do with the rest of your life?" Right now, after spending years thinking about this and talking to people and soul-searching, I do believe there is a reason most people get sick. Lance Armstrong was a tremendous influence on me--the bike rider who recovered so miraculously and went on to win the Tour de France. There's a statement in his book, made by a friend of his, who said, "Lance, I think you got cancer because you were meant to contribute more to the world than just as a bike racer." And sure enough, if you read his book, you'll see that once he's done bike racing, he really just wants to spend the rest of his life trying to help other people with their fight. He, like me--I don't know why I survived when so many others don't--but he said, "All I can do is try to help people and give them advice that helped me."

People say, "Well, you're certainly angry about this." I've spoken in several public forums, a couple of colleges, both of the colleges I went to, undergrad and graduate school, and quite a few churches. I've spoken somewhat on the Rotary Club circuit, and people say, "Boy, he's sure angry." I've thought about that and I don't like to be angry, so my focus now is to try to focus that anger in a positive way. I've been working on a few ideas that I'm going to try to get some advice and opinions on. All of them are focused somehow on starting to educate the world that judging and stereotyping all cancer patients as what I would call "damaged goods". That labeling has got to stop because it's devastating people. I don't think anybody who fights through this disease should ever have to worry about a job or money or being discriminated against. One of the things that's spurred me on recently is an article--I don't think I mentioned I live in rural Maine but--an article in the Portland paper recently. They had talked to a lot of experts on discrimination who said basically the ADA laws--the Americans with Disability Act--has lost all of its teeth due to some very conservative high-level court rulings, making it very--almost impossible to bring a claim successfully against an employer.

Employers and Issues of Privacy

I know there's a lot of people out there, so many people say anecdotally, "Well, everybody I know with cancer, their company treated them wonderfully." But the studies show that's not true and even if there is a law it's not working any more. The other thing I have found, and this was even documented by a Clinton administration study, that there is no doubt that at least most medium to large-sized companies can get access to anyone's health records through their insurance companies. This study was very shocking. I remember seeing it on TV, but unfortunately I have never heard any action taken to try and stop it because I think they know it's impossible to stop it. So even if people don't know or you don't reveal your cancer history and let's say you don't have much time out of work to explain, in many situations without you knowing it people are going to find out that something happened to you.

The other thing I just learned recently that's really provided just more motivation to try to do something positive about this is, I have a friend with a very large, well-known and highly regarded executive recruiting firm, who said they always will research people's background online. I didn't even know this, but after I spoke at Dartmouth College, they posted an article summarizing my talk on the Web [laughs] and I didn't even know this for a couple years later, but if you just search my name on Google, or any big search engine, up will pop not only that but my cancer survivors network story, so anyone, including my current girlfriend before I met her [laughs] checked me out on site. So if you do anything in the public room, I'll just warn you, anybody who wants to can find out about it.

Looking for Answers: Getting Survivors Hired

I'm actually glad that this has all happened, because it's helped me to decide to really take some steps forward and I'm exploring some opportunities with the American Cancer Society where I try to get into an advocacy role. I've had an idea of either starting a company that only hires cancer survivors, just to make a statement to the world that we're not damaged goods. I've also thought of just starting an organization where we basically publicize for survivors that are comfortable with it, who these people are because they shouldn't have to hide anything. That was one point I guess I didn't touch on. There are companies and there are people out there who don't react negatively, that look at people like me and any survivors and say, "Wow. You must have an incredible outlook on life, and I'd think it would be a privilege if you were part of my organization." I was actually hired as a consultant for three or four months by a woman who that turned out was the main reason she wanted me around.

The problem is, those people are out there but how do you identify them? I think there is a way to do that. There are survivors out there who are in hiring positions that I think would say they'd go out of their way, maybe, to hire cancer patients. This train of thought has even led me to such an extreme idea that it's probably just a dream, but companies, I think, should be forced to have to watch who they interview, hire and fire, cancer patients just the way they have to look at minorities and women. Again, I managed some fairly large departments and we were always very concerned about showing that there couldn't be any base built that saying that we were discriminating in any way in the hiring or firing process. I keep thinking about that. I want to get some reaction and input to that because to me it's the same kind of discrimination that's going on and it's very damaging. I don't know if that's why someone gave me cancer. I was one of the last people on earth that most people would ever have expected to get it, but that's how I'm thinking of trying to turn some of this anger into something positive.

Life is Short and Precious, Help Others

My closing comments are, I worry that it sounds like this is a negative story, but a friend of mine at church, who has had cancer three times, we got up and spoke together a while ago to the congregation about what we'd learned [laughing] and he starts his speech with, "I've had the privilege of having cancer." As many patients--I think everyone I've met will say--it certainly woke them up to how short and precious life is and to what really matters in their life. I think that's why we're special people and I think that's why we shouldn't have to hide anything from anybody.

What got me through--the only advice I have is--I haven't talked too much about the mind-body connection. But if you're not familiar with it, and I'm amazed how many people still aren't, I would encourage you to go to the bookstore or just talk to the American Cancer Society and access the resources.

My other advice is never give up. Finally, the thing that got me through was--I feel I was very fortunate. I had so many people pulling for me. I had my wife and two kids. I come from a very large family. I had people get me into prayer networks, literally going around the world, where I had tens of thousands of people praying for me. I think that's what helped is I knew I had such a big support group. I didn't want to disappoint them and that's my only concern is I think we also have to look out for people who don't have as many reasons to live as I did. I know that one of the missions of the ACS organization is to make sure people have the support they need to fight this battle.

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