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Bangor Metro >  December 2006 >  A Journey Called Cancer

Bangor Metro Photo of Dr. Bernie Dahl, Roxanna Adams and Michael Crowley

It’s the news no one ever wants to hear: You have cancer.

Roxanna Adams got the news that she had breast cancer nine years ago. The owner of Atlantic Awards, a trophy, awards, screenprinting, and specialty advertising business in Bangor, she went through a successful course of treatments, including a lumpectomy and radiation therapy.

Michael Crowley woke up with a lump on his neck two days before the 2004 American Folk Festival premiere, which he was chairing. He would go on to have radical neck surgery, following the discovery of a cancerous tumor in his parotid gland. Crowley is vice president for development of EMHS Healthcare Charities; previously, he served as a Bangor city councilman and mayor, and was executive director of the Bangor Region Chamber of Commerce.

Bernhoff A. Dahl, MD, was diagnosed with prostate cancer two summers ago. A consultant, author, speaker, mountaineer, and retired physician, Dahl was the cofounder of Dahl-Chase Pathology Associates and is owner of the Freedom Group of businesses, based in Winterport. His recent book, Optimize Your Life, has been published in the U.S. and several foreign countries.

The three of them agreed to get together and share their experiences with Bangor Metro, and with each other.

Finding Out

Roxanna Adams:  I was diagnosed nine years ago in August after going in for a routine checkup. I got a call from my doctor’s office that they wanted to repeat my mammogram. They said something had showed up. It might be just a glitch, but they wanted to make sure. They said that 80% of the time, nothing’s wrong, and I knew right then. My family kept saying, “Stop, stop.” But I just knew that I was going to be in that 20%. I was never angry. Stunned would be more accurate. When you get diagnosed, you feel like you’re hanging out there all by yourself. It doesn’t matter what kind of family or support system you have. It’s something you have to face within yourself, this insidious thing, that’s been growing in your body. I never called it “my cancer,” because I didn’t want to own it. I consider it a demon.

Michael Crowley:  I had just finished six years of city council service. We had just completed the third year of the National Folk Festival and it was the first year of American Folk Festival, in August 2004. I was chair of the festival. On Wednesday, two days before it opened, I woke up and I had this plum-sized lump on the right side of my neck. It had appeared overnight. I went to my primary care physician, and it was treated as a potentially blocked parotid gland. I was given antibiotics and sent home. In hindsight, I realize now that I was becoming very weak and tired. I was going home at noon and taking these sort of power naps, which I’d never done. I was having a hard time making it through the day, and I was sleeping much longer in the evening.

Nonetheless, I took the antibiotic, and went through the two and a half week regimen, and waited two more weeks. Then in late September I decided: This isn’t going away; I want it surgically removed. I was very naive. I may work in the healthcare environment, but I was extremely naive about what was happening to my body.

I went to an ear, nose, and throat specialist. He sent a sample to Dahl-Chase. And we waited. When he gave me the results, he closed the door and said, “You have a rather serious situation.” It was surreal. It was almost an out-of-body experience. I was watching this guy—me—being told something, and I was observing it.

I left there and went back to my office, and closed the door, and had to reconcile myself with what was happening. What was I going to do now? I decided I needed to rehearse telling someone about this. I picked a family member, my brother. We’re close, but my family wouldn’t think that would be my first call, and he wouldn’t either. But he had been diagnosed with cancer, he was in treatment, and I needed to tell someone who would be the least emotional about it. He handled it well; I was the emotional one.
 
Bernie Dahl:  I’d had a 16-year history of low white blood count. Over decades of practice as a pathologist, I saw three cases of low white count that exploded into acute leukemia. So in the back of my mind there was this idea I’d get acute leukemia.

About 12 years ago, I decided to enter a study at Mayo Clinic for prostate cancer. Turns out I had no free PSA. This was not cancer, but it was a bad, ominous sign. As a pathologist, I’ve seen hundreds and hundreds of people with metastases. I thought: Why am I going to be spared? I’m going to be one of these people one of these days.

Even though I knew better, I got sidetracked and didn’t keep track of the prostate thing, and put off getting it checked. I had a biopsy on the Thursday before Labor Day 2004. On Friday, the diagnosis comes back from Dahl-Chase that “patient Dahl” has prostate cancer.

Deciding What to Do

Michael Crowley: A series of very rapid decisions had to be made. The cancer was aggressive. I needed to have a tonsillectomy immediately to determine where the cancer was. The tonsils were clear, but the tumor was rather sizable. I’m 160 pounds lighter today than I was then, so my body masked a significant amount of the mass. Part of it was obvious, but there was a much larger part inside.

It was determined that I needed to have radical neck surgery. I had a 25% chance of survival going into this. That’s what I was told. The surgery could have been done locally—my doctor and I decided to go to someone who does this highly technical surgical procedure on a weekly basis. I had the good fortune of having the director of otolaryngology at Lahey Clinic, Dr. Peter Catalano, perform the surgery.

These are all life-threatening decisions, not whether or not to turn left and right at a stoplight, and they all had to be made within 45 days of diagnosis. I told my doctor, “You map out a plan that’s the most aggressive plan possible. I don’t want to wish later I had tried something.”

Bernie Dahl: As a pathologist I saw the bad cases, the dead people. I didn’t see the carcinomas and leukemias and lymphomas that did well. I know every lab test that can be done, and read every piece of research I can get my hands on, so I’m the patient from hell. No physician wants to see me coming.
Prostate cancer is not a rare disease. One in every six men will get prostate cancer. There are a lot of cases, so consequently there are a lot of studies. My urologist, Dr. Ram Rao, put me on three “designer” drugs, a therapy plan, and he also pointed me toward the medical papers of the people doing the research, the people I wanted to see.

I wanted surgery. Dr. Horst Zincke at Mayo Clinic said that with radical surgery followed by anti-testosterone therapy, I had an 80% chance of living 10 years. There are 50 oncologists in the country that do just prostate cancer, so I picked one that would still be alive and practicing 10 years from now, in Marina del Rey [California]. That’s my goal, to be here in 10 years.

Roxanna Adams:  The doctors will give you treatment options, but they’re not going to tell you what to do. You have to make that choice. They’re not going to make that decision for you, so you’d better do your research.

This was nine years ago, but I was given some information that was 20 years old. I ended up giving my doctor some information. My husband, Ray, and I were basically left on our own to research our options. I used the Internet. You need to have as much information as you can.

Treatment

Michael Crowley: The tissue that was removed was an inch in depth, four inches in width, and about a foot and a half long. It ran from the side of my face, down my neck, and around and over my shoulder. There was a 98% chance I would lose movement in the right side of my face, because the tumor was wrapped around nerves and facial muscles. Reconstructive surgery would be necessary as well.

When I came out of the surgery, my chances improved to 50-50. I found out over a three-week period that the facial nerve had not been severed. Although there is some paralysis, I don’t think it’s obvious to anyone.
I also had radiation therapy here in Bangor. In my work, I raise money for Eastern Maine Medical Center and other affiliates of Eastern Maine Healthcare Systems. And one of the things we’d recently done was to bring some new technology for breast cancer detection and radiation treatment to Bangor called intensity modulated radiation therapy, or IMRT. What it does is target high-dose radiation to a specific tissue area. It’s all computer programmed. Only 26 hospitals in the country were using it, and we were bringing it to Bangor, Maine. And here I was, three years later, a recipient of that innovation.
 
Bernie Dahl: A friend and retired oncologist told me to learn all I could about prostate cancer, and to find the therapy best suited to me. I had radical surgery at the Mayo Clinic. I had my prostate removed, and I agreed to this anti-testosterone therapy in a cyclic, “on-off” pattern. The other option was to have my testicles removed, but there’s a remote chance that I’ll get through this, and I may want them back. That turned out to be a good decision.

Right now I have no functional testosterone in my body. This hormone therapy is hell. I cry now—my feminine side came out. I’ve been through “menopause“ once and “puberty” twice, so far. I called my daughter, who’s a gynecologist, and told her about it. She said, “Tough it out, Dad—now you know what your wife is going through.” And I thought, for this we sent her to medical school?

Roxanna Adams: I had a lumpectomy, followed up with radiation treatments and a five-year tamoxifen regimen. Back then there were women from Aroostook County, where I’m from, who had to have mastectomies because they couldn’t get down here every day for radiation treatment. They couldn’t get it up there. They can now.

About a month after surgery, I had a sentinel node biopsy. My surgeon said, “I’ve never done one of these, but if you’re willing, I am.” There was talk of me going to Miami to have it done, but we decided to do it here. I was the first breast cancer patient in Bangor to receive that treatment successfully. Michael Crowley helped set it up.

It involved injecting a radioactive isotope into the tumor site, following it with some blue dye, and removing the lymph node that the radioactivity concentrates in. That’s what’s called the sentinel node. If that node is clean, you don’t have to have all your lymph nodes out. It’s much less invasive. They had prepped me to have several lymph nodes out.

Cancer is so unique to the person who has it. Perhaps that’s why they haven’t been able to find a cure. The organism adapts itself to its host. Each case and course of treatment is different.

Faith and Spirituality

Roxanna Adams: I didn’t turn to God after I was diagnosed. I’ve always had God in my life. Cancer was something that I always feared, and then when I got it, there’s not a lot that I really fear any more. I guess if I were to say anything about it, my greatest fear would be to find myself without God. I think I’d be ready to pack it in if I didn’t have God in my life.

I didn’t know whether I was going to live to see my grandchildren. The one thing I wanted more than anything else in the world was a grandchild—and now I have her. She’s eight months old. And I know this sounds hokey, but this baby grandchild is the same baby that’s been visiting me in my dreams for 20 years.

Michael Crowley: At first, I felt there were so many things going on in my life that were important—how dare this happen to me now? There were medical professionals who said, “You need to understand this isn’t a blip. This isn’t an inconvenience.” And I needed someone to say that to me more than once. Maybe I was in denial because I wanted to be in denial.

Part of what I do is focused on caring for others and I’m very proud of that; it’s who I am. What I had to do that was very hard for me was to turn that off and focus inward. I had never been there before.
I began to look at what I was doing in my life, and with my life. I began to reassess all of my values. There were many things I was pleased to face, and some I wasn’t. I was raised a Catholic, was an altar boy, but this was really what you might call my come-to-Jesus moment. I realized I had been woefully neglectful of the spiritual side of Michael Crowley. I decided if I make it through this, there were going to be some changes. Now I’m making time for it; I participate at a higher level. Perhaps I’ve always wanted to, but now it has its due place.

Bernie Dahl: I live every day. I’ve had near-death experiences, including my Mount Washington one, for which I’m infamous.

I have Christ as my savior and have no fear about going to heaven, assuming there is a heaven. That’s what I’m choosing to believe. But I don’t want to leave my wife a widow. That would be a selfish thing to do.

Living with Cancer

Roxanna Adams: In my case, they will not say that I’m cured. I will always be in remission. You live with the fact that it could come back. Breast cancer is so unpredictable. It can crop up anywhere. You have to fight it every day of your life.

One turning point was when I was going through a very difficult time in my treatment, and Ray and I heard a song I hadn’t heard since the ‘60s called “Red Rubber Ball”: I think it’s gonna be all right, yes, the worst is over now. I took it as a sign. I still laugh out loud when I hear it—which is usually when I am troubled or stressed.

Bernie Dahl: At my seminars I tell people three things. Number one: Be prepared to die. Have your life in order. Number two: Live every day. And number three: Do it now, because you never know when number one’s going to hit.

We’re all in remission—no demonstrable evidence of disease. But we all know it could come back. I’m waiting for it to come back. But you can’t let that consume you. I’m having a lot of trouble with my knees right now, and the other day I was getting angry because I was having a hard time getting my pants on. But you have to catch yourself and say, “Hey, I have another day to live—don’t piss it off!”

People say life is a journey. But if you look up the origin of the word “journey,” it is the distance you can travel in one day. Having a cancer diagnosis helps you appreciate the one day you know you have.

Michael Crowley: I don’t know if it’s providence, or a coincidence, or that you notice things you didn’t before. It sounds corny, but it’s like now the skies are bluer, and the sunsets are a different color. Roxanna, Bernie, we’ve all always had humor in our lives, but it’s as if you enjoy humor more. I’m just so pleased going forward to have this advantage.

I also know this is not over. This is a lifelong reality; it’s not a matter of if but when. Do I want to face this again? No—I wish it would go away. But I will only lose if I fail to fight. We’re here to do good and to leave things better. And I think you have to fight, for that reason.