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Survivor Interview – Ian I.

Ian is a leukemia survivor. He talks about accessing quality care, aftereffects of treatment, and the process of applying for Social Security benefits.

A bald adult man wearing a camo shirt is interviewed against a white background

I was working two jobs: one during the day, hauling heavy equipment, and then at night, piling snow. I had a real bad day at work. I wasn’t able to completely do what I was supposed to. I didn’t go to work the next day. I was still in a 90-day waiting period for insurance. I was two weeks outside of the required time. I wanted to wait to go to the doctor for obvious reasons. My girlfriend, Carrie Ann, talked to a nurse and said, “He’s having problems with his heart rate.” They said, “If there’s anything wrong like that, then you need to take him to the emergency room.”

I walked into the emergency room, they drew some blood, and then that’s where it started. They came in and said, “You’re going to be admitted.” And I said, “No. They haven’t told me anything. I’m anemic. It’s going to be okay. Give us some brochures. We’ll figure it out.” “Oh, no. We’re going to admit you, but we only have room on the fifth floor.” And when she said that, my sister said, “Are you sure? The fifth floor?” She says, “Yeah. The fifth floor. That’s the cancer floor.” They left the room. And we knew then.

I live in Anchorage, Alaska. We have a center that has limited capability for treating cancer. I know they treat a lot of different cancers, but the type of treatment that I needed was pretty specialized. Going to Seattle, that was really the best place for me. It’s a night and day difference, as far as the quality of medical care. They were a lot more thorough. The way they did things, the personnel, the training. They were really treating the patient, and not just the disease.

Demand the best. Don’t let them get away with anything. If you don’t feel comfortable, then you need to express that. If they don’t see to that need, then you need to find something else. It can be difficult. I was really lucky because Seattle’s really close. I know a lot of people go to Seattle or one of the major centers. My advice to anybody who’s diagnosed with a cancer in Alaska is, if it is something really serious and you want to have the best care, I wouldn’t be treated in Alaska. The quality of care is just not there.

So I went to Seattle. I had my induction therapy. I was lucky enough to go into remission. The doctor came in and said, “You’re going to need to have a transplant for the best chance to be long-term leukemia-free.” They started testing my dad, my sisters, and they all came up short. I went through two consolidation treatments to keep it in remission. During this time, they were doing the genetic testing waiting to see if my sisters were a match. They weren’t a match. My dad came up to be a really close match. We found out we had a search benefit. They came back with quite a few matches. I was really lucky.

Diabetes was a temporary thing. That was steroid-induced. After the transplant, I had hyper-acute graft versus host. I developed a rash from the top of my head down to upper torso, 104-degree temperature, shaking and chills. We were really lucky enough to be able to control it with diet. I stopped eating sugars and creams. That was being proactive. Just do what you can do to alleviate your own problems.

Because of the hormonal changes I went through, I had some sexual side effects. Loss of desire, things just didn’t work the way they used to. It’s a huge change. You have to adapt and deal with those challenges as they present themselves. Everybody’s going to have a different experience. Talking to your medical staff and explaining to them what it is that you’re going through can help you, because they know. They’ve seen it. They know what pointers they can give you, or they can give you some sort of treatment. I really wasn’t into, “Give me another pill to fix the problem that this pill’s giving me.” I was more into “less is more.” I didn’t want to take all the analgesics, the painkillers, because of the side effects that they gave. I wanted to be clear.

My girlfriend and I were together for eight months when I was diagnosed. She had raised monies through The Leukemia & Lymphoma Society, running marathons. She’s been a mentor and done a lot of work there. That’s part of how I met her. She didn’t even think about leaving or not going with me. I remember saying to her, “You don’t have to do this.” It didn’t even cross her mind. She packed the bags. She had all her stuff. She knew more about it than I did. She was invaluable. She really went through it too. I think in a lot of ways, it was harder on her than it was on me. She has a saying, “People in your life are either meant to be there for a reason, a season, or a lifetime.”

I think the emotional effects of getting diagnosed with cancer are deep. It’s like a wound that never heals. You deal with them on a daily basis. In one aspect, I go back to work, and I’m not the same. I project an image that I am the same. It’s all so raw. Way too real. Having to educate people. Having the thought of relapse. Just the effects on other people. How it affected my family and Carrie Ann’s family. It’s a healing process that you’ve got to go through. I think I actually started my healing process when I tried to reach out and to give back. I know myself, and I’m someone who will internalize a lot of pain, anguish, anger. Won’t let it show on the surface. If something bothers me, I’ll internalize it rather than lashing out. Being able to speak to a group of people or someone who’s possibly going through it allows those emotions to come out in a non-self-destructive manner.

Post-traumatic stress syndrome would sum up a lot of what I’m still going through. I remember I just came back from a trip, and I’d felt pretty normal as I have in a long time. I was sitting down during the news and a Procrit commercial comes on, and it’s like, wham! All those emotions are right there, and you think back to what really happened. Just crying for no reason. I blocked a lot of stuff out. I think that was maybe a survival reaction. I don’t think I did it on purpose. Carrie Ann will say, “Do you remember that? Well, I do.” A lot of the stuff that was really not so happy, I don’t remember.

I feel guilty sometimes that I survived. I think that’s the first time I ever said that actually. I’ve been alive for thirty-one years now and to see those kids and the look in their parents’ eyes. The way I dealt with that was, whenever they wanted an extra pull from a bone marrow biopsy or an extra blood sample, it was like, “You want material? Do it a couple times. You can take whatever you want if it makes it better for somebody else.” Especially the children. I know the experience that I went through is not even close to what the first transplants were. The side effects that those people went through, I can only imagine. What I went through was a cakewalk.

We also had to deal with Social Security benefits. Coming down, getting the paperwork, filling the paperwork out, and then dealing with trying to get on that as soon as possible. Life goes on. Bills still come. I ended up talking to an adjudicator from the office in Anchorage. She said, “You’re in remission. You’re cured. You don’t need Social Security. You’re going to be able to go back to work.” I’m trying to explain to her the type that I had. I needed a re-transplant. That was the course of action. It was there for her in black and white. A diagnosis of AML is an automatic two-year Social Security benefit. I ended up having to go to her boss. She was someone who didn’t have any type of medical training. She was asking for blood test reports and all of my medical stuff so that she could review it. It didn’t make any sense to me. We had quite a few challenges as far as the insurance and the Social Security.

Long-term leukemia-free survival, that’s the goal. I’m at the year-and-six months post-transplant. If I make it five years, I’ve got a pretty good shot of living longer. So right now, my planning is to do as much as I can, spend time. Make my mark. Help out.

Livestrong means living every single day as much as you can. Doing what you love to do. Loving the people that surround you. Not giving the disease any power. Definitely don’t give up.

My name is Ian Ives, and I’m a two-year cancer survivor.

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