Blogging and Surviving: 'My Cancer'
NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
Right now, My Cancer. At the beginning of each entry for his blog, My Cancer, journalist Leroy Sievers writes, after that day, your life is never the same. That day is the day the doctor tells you you have cancer.
A year ago, Sievers was diagnosed with cancer that went on to attack his brains, his lungs and his spine. Today, after several rounds of chemotherapy, radiation and other powerful drugs and a prognosis that had him dying six months ago, Leroy Sievers is still with us. And we'll talk with him in a moment.
We also want to hear from you. If you have cancer, want to share your stories about how your life has changed, give us a call: 800-989-2855. That's 800-989-TALK. E-mail us, firstname.lastname@example.org.
Leroy, welcome back. And nice to have you on TALK OF THE NATION again.
Mr. LEROY SIEVERS (Journalist, Blogger): Thanks. Thanks for having me back.
CONAN: When we spoke back in August, you'd just been diagnosed with new tumors on your spine. Were about to begin new treatment. So how's it going?
Mr. SIEVERS: Actually, pretty well. I mean that was a pretty - that was a low point. The tumors I had were growing. There was a new one on the spine which really scared me, because I didn't know what it was going to do. I'm on a new drug now. I'm back on the chemo. The one on the spine seems to be healing itself, which no one could quite figure out. But I'm fine with that. Doesn't matter why. And the other tumors are shrinking.
So it's actually turned around. It's a roller coaster. Don't know, you know, will it keep going down? Will it come back up? Who knows. But for right now, it's better than it was the last time we spoke.
CONAN: And this week in particular, as I understand it, a holiday, national holiday, but a special holiday for you.
Mr. SIEVERS: Yeah. My chemo is two weeks on, one week off. I was supposed to start the new chemo yesterday, and my doctors were kind enough to give me an extra four days so I can have Thanksgiving dinner without being on the drugs. Unfortunately, I start at 8:00 in the morning the next day.
But this extra four days is like a terrific vacation.
CONAN: I've heard chemo described as an appointment with a bad oyster.
(Soundbite of laughter)
Mr. SIEVERS: I think that's putting it mildly. It just knocks you down. I feel like - I've been on it for the better part of a year now. It's like having the flu for a year, but there's nothing you can do to make yourself feel better. You drink hot tea, you take a nap, whatever. It's artificial, because as long as you have the drugs in you, you're going to feel that way. So there's just nothing you can do to feel better.
CONAN: Let's see if we can get some listeners involved in the conversation. By the way, you've been interacting with listeners for so long on your blog, My Cancer, I wonder what's the most interesting kind of question you get, do you think?
Mr. SIEVERS: It's interesting. I wasn't sure how people were going to react for the most part. They don't react to what I say. A lot of people simply want to tell their stories. It's, you know, look. This is what happened to me, or this is what happened to my mother, my father, my husband. You know, whatever.
They just want someone to talk to. On the other hand, there's a woman who wrote in - she writes regularly. She's having surgery tomorrow and sort of told everybody and said, you know, wish us well. So it's turned into sort of a community as well.
CONAN: Let's get Catherine(ph) on the line - Catherine calling us from Greensberg - excuse me, Greensboro, North Carolina.
CATHERINE (Caller): Hello, thanks for taking my call.
CATHERINE: And congratulations on getting the break for Thanksgiving. I know that's probably just going to be great for you and your family.
Mr. SIEVERS: Thank you.
CATHERINE: My mother was recently, in July, diagnosed with cancer. And I have the utmost respect for anyone who's going through this type of thing. And my question is to you, how has going through this, how has undergoing treatment affected your relationship with your family? All I know it's brought my family, personally, very close together and has really shown the love amongst my family. And I'm wondering if the same is true of you?
Mr. SIEVERS: I think it is in many ways. And this may sound sort of silly. I think it's harder on the family, it's harder on the loved ones in some way than it is with the person with cancer. I know how I feel. I know when I have good days/bad days. If you're the loved one or the caregiver, whatever, all you can really do is worry. People sort of imagine the worst, and, you know, you can keep asking how do you feel, how do you feel - which I know makes me nuts. But it's just really hard.
And in a very different way. I mean, it brings you closer together, but I really think that in some ways the burden falls heavier on the loved ones.
CATHERINE: Well, thank you very much. I appreciate that.
CONAN: And Catherine, good luck.
CATHERINE: Thank you.
CONAN: Here's an e-mail question, this from Jill in Boulder, Colorado. I love that you're documenting your battle with cancer and sharing it with others. I wanted to know how writing online about this battle has helped you.
Mr. SIEVERS: It makes me think about - I mean, there's a plus and a minus sign to it. It makes me sort of dwell on it at some point every day. I have to sit down for a half hour or an hour, sort of think about it, think about what I'm going to say. It makes me concentrate it when, obviously, some days I would just like it to go away and not think about it.
Mr. SIEVERS: But I also have - it's a wonderful opportunity to say things that I think a lot of people don't want to talk about. One of the biggest problems here is that a lot of people don't - just don't want to talk about it. It breaks my heart. People will write in and say my - again, fill in the blank: mother, father, husband, brother, sister - just won't talk about it. And I think that - you just don't have the right to do that. You have to share with other people. You have to share with your loved ones. They deserve it.
CONAN: Is there an element - and there are with other diseases - there's an element of shame connected to them. Is there an element of shame to cancer?
Mr. SIEVERS: I think there used to be. I think our parents' generation, going back, no one really talked about it. You'd see an obituary, and it would say, you know, after a long illness or something like that.
CONAN: Yes, yes.
Mr. SIEVERS: I still run into people who can't say the word. I think I've told this story before. I had a technician - I was getting a CAT scan - and she said we're looking for CA. And I had no idea what that meant. It turned out it was cancer. She just couldn't and wouldn't say the word out loud.
Shame - I mean, it affects so many people now, I don't think you can - it's just a disease. You get it. It doesn't really matter why you get it or how you get, so there shouldn't be any shame.
CONAN: Let's go to Judy, Judy with us from the road in South Carolina.
JUDY (Caller): Yup, on the road again, and I somewhat agree and disagree with you. I'm a 10-year cancer survivor. I - you know, you live with it. Once you have that initial shock, and once you've been diagnosed with it, you live with it every day, and it - your attitude and how you present it to the members of your family as to how they accept it. I have learned to do things. I've re-prioritized my life. I've learned to say no. I touched a snake for the first time, and I'm 63.
CONAN: And how did it feel, Judy?
JUDY: It was fantastic!
(Soundbite of laughter)
JUDY: I even touched an alligator.
(Soundbite of laughter)
CONAN: And very - they're not slimy at all, are they?
JUDY: No, neither are the snakes. It was amazing. And I'm in the car, and I'm driving all over the country by myself. And I take chances, and cancer was a bad word. And even today when you tell people, they look at you with that sad, stricken look on their face. But the alternative sucks. And I'm on a protocol for the rest of my life, but, you know, they're coming up with new stuff every day, every week, and what's your alternative?
Mr. SIEVERS: There is no alternative. I mean, you're absolutely right. And in some ways, I think cancer teaches you things you should've already known.
JUDY: You're right.
Mr. SIEVERS: I mean, to appreciate more of what you have. It's easy, and a lot of cancer patients will say you know, I try to live life to the fullest every day. And some people say boy, I'm on chemo. It's all I can do to get out of bed. That's okay. I mean, if that's the best you can do on a given day, that's just fine. I don't feel the need to go out and climb Mount Everest or go do something like that, but you do appreciate it. Time changes. I mean, the clock is running, and it is for all of us, but for cancer patients, I think it's a little louder, maybe.
JUDY: You're right.
CONAN: Judy, drive carefully, and we'll expect a call back next year.
JUDY: You're on. Anytime. Good luck, happy holidays and give it your best shot.
Mr. SIEVERS: Thank you.
CONAN: All right, Judy, thanks very much.
JUDY: Okay, bye-bye.
CONAN: You got a chemo holiday for Thanksgiving, and everybody says oh, gee, this is so tough around the holidays. I guess it was just about a year ago that you began to notice that you were having some difficulties and needed to go back and check with your doctors.
Mr. SIEVERS: It's funny. I mean, I didn't realize anything had changed. There were a couple people that actually said, once we found out what was happening, that I was not myself at Thanksgiving dinner, which I hadn't noticed. It was literally a week later that I started slurring my words, which was the sign of the brain tumor. And the funny thing was I noticed it immediately, and no one else said anything. And I kept sort of (unintelligible) all my friends, because I wanted them to either say, oh, it's nothing or boy, what's wrong with you?
Mr. SIEVERS: And everyone was too polite, or I don't know what. So yeah, it was about a year ago, and the first prognosis was six months. The second prognosis was this month, which clearly is not going to happen.
CONAN: Not going to happen, no.
Mr. SIEVERS: So yeah. I mean, the holidays are interesting time. People always ask you is it more poignant for you, is it more meaningful for you? The question for every cancer survivor, or every cancer patient is, am I going to be here for the next one? Is this my last Thanksgiving? I have no idea. But that's an added - I don't want to say burden, but it's just something that's in the back of your mind.
Mr. SIEVERS: You wonder. This is great, love Christmas, love New Years. Is this it?
CONAN: Better not burn the bird this time around.
(Soundbite of laughter)
Mr. SIEVERS: Exactly, exactly.
CONAN: All right. Let's see if we can get another caller on the line, and this is Randy, Randy with us from Boston.
RANDY (Caller): Hi.
RANDY: I'm actually sitting in my car in the health center, where my husband is having his second chemo treatment. And I am two years out of having had cancer. So we are a double-cancer family here. My son wears one yellow Lance Armstrong Live Strong bracelet on both of - you know, one on each arm now.
And, you know, I'm curious as to whether you've come across this and, you know, for me, I was just sort of coming back into my life. And now I sort of feel like I'm re-experiencing my own cancer again at the same time that I'm trying to get my husband through his. And...
CONAN: It must seem terribly unfair.
RANDY: You're absolutely right. And yet, on the other hand, you know, when people say to me oh, I shouldn't complain. I have this, that and the other thing going on, I find myself saying, you know, but that's what on your plate. And it's in front of you right now.
And, you know, everybody's plate gets filled with something or other, and sometimes it's the burnt turkey leg and sometimes it's not. And I don't know whether I'm still in a state of shock about this, but - so, you know, that's what I'm laying out to you. I mean, have you - I am not familiar with your blog. I'm going to go home and go to it. But have you encountered this? And what do you have to say about it?
Mr. SIEVERS: Well, it's very common for people to say - I mean, your friends will start telling you about a problem of theirs and say oh, wait, but it's nothing compared to yours, or something like that.
Mr. SIEVERS: And you want to say, you know, it doesn't matter, you know, I'm sick or not. I'm still your friend. If you stop sharing those things with me, somehow we're losing a part of that friendship. I still want to be able to listen to people's problems and to comfort them. It's not a contest. It's not like, you know, my problems trump your problems, so let's just talk about me. That's a really important part, I think, of any friendship or any relationship. But boy, it's universal.
I mean, you hear that all the time. And people mean it in the best ways, but I want to say that's still important to me. You know, you need to tell me your problems. They are your problems. They're important to you, and so they're important to me. It doesn't matter whether I'm sick or not.
RANDY: Yeah, I agree with you. I agree with you.
CONAN: Well, Randy, we wish your husband the best of luck.
RANDY: Yeah. I wish you all a good holiday, too, and good luck with you. Good luck to you.
Mr. SIEVERS: Thank you.
CONAN: Thanks very much, Randy.
RANDY: It's a tough road. Bye-bye.
CONAN: If she wanted to read your blog, where would she find it?
Mr. SIEVERS: It's at npr.org/mycancer.
CONAN: We're talking with Leroy Sievers, who's the author of that blog. And you're listening to TALK OF THE NATION from NPR News.
And let's see if we can get another caller on the line. And this is Christina, Christina with us from San Francisco.
CHRISTINA (Caller): Yes, hi.
CHRISTINA: Thank you very much. You asked maybe how this changes when you have cancer. I'm a 20-year survivor of cervical cancer, and - but what has changed in our life is that my father's been diagnosed with B-Cell Lymphoma, and he's 83. My daughter's 13. And how it's changed our lives is we tend to be positive about any of our problems, but we now have to - although it's brought us closer together emotionally, physically we have to time our visits because of how my dad feels and, of course, then the lowered immune system of chemotherapy.
So we live about four hours apart. And where we could just throw things in the car and go visit on a weekend, we now have to make sure that we are physically fit and not carrying a virus or whatever. So that's the difficult part, is that's how it's changed our lives is the visit, and the physically being close together.
Mr. SIEVERS: Everything becomes more complicated.
Mr. SIEVERS: I mean, things you never thought about before, all of a sudden you have to think about. I - for me on my cycle, first week I'm not worth very much. Second week, I'm sort of coming out of it. Third week, I'm pretty good. So you have to schedule things. You keep track. You know, there are times with the chemo, it affects my lungs. I watch for elevators rather than stairs. And you don't like to say that. I mean, even if you're going up two or three stories - I don't like to say boy, I can't take the stairs, but some days you can't.
It's just - it affects every part of your life in ways you wouldn't expect.
CHRISTINA: That's it. It's like some of the disappointments seem - someone would say well, yeah, so what? You can't go to the farmer's market this Saturday because you're feeling really kind of exhausted, you know. But with my father, who's 83, going to the farmer's market and not being able to go there is very disappointing.
Mr. SIEVERS: Well, I think that's one of the toughest things, I think, for all of is being told you can't do something. No one likes to hear that, and no one wants to do it. And all of a sudden, a world that was wide open is much narrower, and that's one of the toughest things to take.
CHRISTINA: I, too - even my father in just saying I have to stay home from church this Sunday is a disappointment.
CONAN: Christina, thank you very much for the call. I'm afraid we're running out of time.
CHRISTINA: Okay. Well, thank you so much.
Mr. SIEVERS: Thank you.
CONAN: We appreciate it. And Leroy Sievers, before we go - Thanksgiving, I guess you think about that holiday in different terms, as well.
Mr. SIEVERS: Sure. It's coming up on a year. Again, it's sort of in the back of your mind. You don't like to dwell on it. Is this my last Thanksgiving? I don't know. No one can answer that. But that's something that a year ago, I never thought of. A year ago, the world was wide open, my future was wide open. You know, the world was full of possibilities. It's a much different world now.
CONAN: Happy Thanksgiving, Leroy.
Mr. SIEVERS: Thank you, and you, too.
(Soundbite of music)
CONAN: You can read Leroy Sievers' blog and download his podcast at our Web site, npr.org/mycancer. This is TALK OF THE NATION from NPR News. I'm Neal Conan in Washington.
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