Transcript of “I Think I am Probably the Happiest Ileal Conduit Person in the World” with Vicki S.

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model-year neobladder, and a patient advocate, supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. This podcast is sponsored by Merck and Bristol-Myers Squibb.

Rick Bangs:

I’m excited to present a patient interview that BCAN associate, Joslyn Brown, conducted with Vicki, a bladder cancer patient. Vicki had years of trouble with her bladder before having a radical cystectomy in 2016. As you’ll hear, Vicki says that, from the moment she woke up from her surgery, she felt better. And she considers herself to be the happiest person in the country to have an ileal conduit. I think that you’ll like her positive attitude and infectious enthusiasm. Here’s the special episode with Vicki and Joslyn.

Joslyn Brown:

And can you give me a little background about the symptoms you had, prior to your diagnosis and the diagnosis?

Vicki S.:

I can. So, many years ago, 20 years ago, I started having a feeling that I had a UTI. And I went to my gynecologist, and I happened to mention it, and he did an exam, and he pressed on something that really hurt. And I was like, “Yo!” And he said, “I fear you have a terrible disease called interstitial cystitis.” It’s a disease, where the lining of the bladder, basically, disintegrates. It’s an autoimmune condition.

Vicki S.:

And I just thought, “Well, I hope I don’t.” But it’s a progressive disease. And so, as time went on, that feeling of having a UTI was more often and more intense. It’s considered… I’ve seen it listed as the third most painful disease known to man. It’s terrible. It’s so life-limiting. So, I had had that for a long time. And then I had some blood, quite an enormous amount of blood, in the toilet one day when I went to the bathroom. And I knew it wasn’t menstrual blood, because I had already gone through menopause.

Vicki S.:

So, I went to see my doctor and he said, “I fear you have bladder cancer.” And I thought, “Whoa, aren’t we jumping a lot of steps here?” So, I went to a urologist, who did a cystoscopy. And he saw three different presentations of urothelial bladder cancer. So, then I had to have, what he could remove, I had to have that removed in two different surgeries. And then, he mentioned that we would do immunotherapy, BCG, and that, if it didn’t work, I would have to have my bladder removed, which is a daunting thing to hear.

Vicki S.:

However, my bladder was not my friend. And so, it was not as daunting for me, as it might be for someone else. And so, I did the BCG for… Let’s see. I think I did four of the treatments. The first and third were manageable. And the second and fourth were just excruciating. And so, I told him, “I’m done. I’m ready to have my bladder removed.” And so, in March of 2017, I did. And so, I think we’re going to talk about that.

Joslyn Brown:

Yes. So, how was it? That’s a whole new normal for you.

Vicki S.:

Yeah. You mean having my bladder removed?

Joslyn Brown:

Yes.

Vicki S.:

Yeah. Well, I tell people, “I think I am probably the happiest ileal conduit person in the world.” Number one, I got rid of that terrible pain. It was just gone from the moment I woke up from the surgery. My surgery was seven hours, which was a long time. And I did need four units of blood during surgery, and then two, a couple days later.

Vicki S.:

But I don’t think that’s very common. A friend of mine, that I’ve mentored through her surgery, didn’t need any blood, and had quite a different experience. She had some negative things I didn’t have, but didn’t have some of those that I did have. So, one of the big deals about this kind of surgery, it is a big one. So, you want to be as strong as possible. I was a big walker, worked out. So, for me, that part wasn’t hard.

Vicki S.:

And afterwards, though, you have pretty terrible anemia, because of losing the blood. And so, I never once napped after that surgery, during the day. I never napped. So odd, to me. I sometimes nap now, but I never napped. But I could not stand up to brush my teeth or to wash my face. So, I had to sit down to do those things. So, I had to get a seat for the shower and that kind of thing. They tell you not to have roughage, not to have raw foods or salads, initially, because the bowels, having been manipulated, are going through all kinds of readjustments. I craved healthy foods and that’s almost all I had. And I did have some constipation, but it didn’t seem like it was, that the raw foods were the problem.

Vicki S.:

The more I ate them, the better I felt. So, I’m not advising that. I’m not a doctor. I think people should follow what was told to them, but I just really craved the healthy foods. I think my body needed that. Also, my stoma nurse had told me, “Be sure to eat tons of protein.” And I’m not a big protein-eater, but I did eat a lot of protein. And I had a really, I think, wonderful recovery.

Vicki S.:

In the beginning, as I said, I was so weak. But I think my surgery was around March 14th or so. And on Memorial Day, I walked nine miles that day, walked it all in one, nine miles. And so, now, I could not have ridden a bicycle uphill on Memorial Day, but walking, I could do. And I walked at a pretty good pace.

Vicki S.:

So, I think they had told me to accept that I might not feel a 100% for six months after the surgery. And I think that’s probably true. I had a lot of mild nausea, just feeling sick to my stomach. Yes. But as far as wearing the bag, I love wearing the bag. I wear the same clothing. I’ve never had a big leak. I’ve had a few times, over these four years, four-and-a-half years, where I have felt like, “I feel a little damp. Am I sweating?” And then, I just changed the bag. And maybe there was a really slow leak, but I’ve never had where the bag just burst. And I only empty my bag, probably, four to six times a day. When I read on the BCAN forum, I’ll see where people are saying that they’re changing their bag every 20 minutes.

Vicki S.:

I do let mine get quite full, I must say. I’m being a little risky there at times, because it’s pretty puffy. But I’ve never had an issue with that. I love the night bag. It is so phenomenal, because I can sleep through the night. So, with the interstitial cystitis and the bladder cancer, I was having to get up multiple times a night. At least five, probably. And so, you have no quality of sleep. So, now I put the night bag on, as I’m getting into bed. Say, at 10:30. And if I want to sleep until 8:30, that bag just takes care of everything. And it’s very comfortable. I sleep on my right side, my back, my left side. I never sleep on my stomach. I’m not comfortable that way, because of some neck issues. But no matter which way I sleep, that little hose is just fine.

Vicki S.:

It turns with me. It readjusts. And yeah, I am so happy. I’ve been, for a couple years now, a Bladder Buddy for Loyola Medical Center. So, they’ll sometimes have me speak with patients, who haven’t made the decision yet, first of all, which diversion to get, but also, even whether to have the surgery. And from that experience, and also from being on the forum, I’ve noticed that, probably, especially males, fear this surgery, because of the risk, or perhaps likelihood, of impotence. And a lot of people fear it, because they have an idea that it’s very nasty, I think, that it’s going to smell, and people will know, and it’s just so nasty. And after my surgery, when friends would come up to me on the street, they would often glance down, to check out. They couldn’t see it.

Vicki S.:

Well, they couldn’t see anything. But it’s not like that at all. For me, at least. And for the people that I have mentored, I’m just thinking the ones that I’ve mentored, who have gotten the ileal conduit and wear the bag, they all have had a really excellent experience. So, that would be my main message in doing this interview, is that it’s not nasty. I have a lot of women friends, who have to wear Depends, who have that risk of leakage at our age. And I don’t have that with the bag. It’s pretty wonderful.

Vicki S.:

Do people ever have problems with the bag? Yes. I’ve read about people, where they couldn’t get it to stick. Or their urine ate through the… There’s a waxy ring that goes around the stoma. I have not had that experience, so I can’t speak to that. But my experience has been just phenomenal and I’m super positive about having had the surgery.

Vicki S.:

But I also have this idea in life, that whatever we’re presented with or whatever I’m presented with, I really want to figure out, how am I going to do this in the best way? How am I going to do this in a really fresh and great way, that is different than one might expect? So, we think cancer, we fall down on the floor, and bawl our eyes out, and we’re going to be dead shortly. I didn’t have that feeling. I had the feeling like, “How lucky am I, that this was found?”

Vicki S.:

Mine was found before the cancer escaped the bladder. And so, that is helpful. However, once you have cancer, your body can create that cancer anew again, even if they get it all, because it’s your tissue, your habits, your DNA, all that. But yeah, my main message is, if one is strong enough, that, I think, it just can have such a great outcome.

Vicki S.:

So, there’s a wonderful store in our town. It’s an award-winning kitchen store. And the ladies in there tell me that I make it sound so great, that they want to get a bag.

Joslyn Brown:

Right?

Vicki S.:

Yeah.

Joslyn Brown:

You do, because interviewing patients, you hear the horror stories. And hearing just how grateful you are, just to have it, it’s polar opposite. But I love it. In a good way.

Vicki S.:

Yeah, it is. I have to say, it’s very hard for me to hear… Well, for example, this summer, I spoke with someone, who elected not to get the surgery and, I believe, might have passed in the meantime. And might have, anyway, because maybe that case was more advanced. But it’s very hard to hear that. It’s very hard to hear men on the forum, so many, saying, “I’m not going to do this.”

Vicki S.:

And I understand, it’s scary. And that sexual ability is a big part of their whole identity, especially for men, I think. But it’s painful to hear, because there’s a whole world of people, who love them and whom they love. And in some cases, they’re electing to not do this thing, because of fears that, either might be unwarranted or yes, they could end up being impotent, but maybe they can adjust to that.

Vicki S.:

And they’ll be so glad that they’re still alive, because when you choose not to live, well, that’s it. Is that really better than being impotent? And I’m not sure that all are impotent. I don’t know. But I just know what I read. And on the forum, too, I have wanted to go there frequently and to say how great my experience has been, because I think people that come there often, are having problems. And so, probably, the people that are living their lives and having a great time of it, aren’t necessarily going to the forum.

Vicki S.:

And I also want to recognize that I had two wonderful mentors. Nancy Parrish is one, who’s been on the forum. And then, another woman who died a few years ago, that mentored so many people. And what a blessing that was, because they were both so positive to me. And that set me up so well, for going into this experience.

Joslyn Brown:

That’s amazing. I do want to ask, because you said you’re a performer, what do you do? And I’m assuming that hasn’t impacted that part of you.

Vicki S.:

Yeah. I teach piano. And I just stopped teaching voice, because I’m having some… Well, I don’t need to go into it. And I’m a choral conductor. And, oh, my gosh, nothing that I do, has been negatively impacted by wearing the bag. And everything that I do, has been positively impacted.

Vicki S.:

I remember after my surgery, one of my kids, who lives in Chicago, called me, I’m in a suburb of Chicago, called me on the phone, and said, “Does this mean that you can come visit us now?” Because that trip, 30 miles to Chicago, or 30 minutes, 40 minutes, whatever, was horrible for me. I had to carry something in the car, where I could go in the car if I needed to. My bladder couldn’t hold very much urine anymore. It was in such bad shape. But it was so painful for my bladder to hold urine. Everything I ate, everything I drank, made it hurt. So, yeah, in that respect, as well, it’s just been a total blessing.

Joslyn Brown:

That’s amazing. I love it. I just love how… I can’t think of the word. I don’t want to say enthused, but how positive, I’ll just say positive, you are about it. It is a breath of fresh air. So, I’m already having different ideas of how your story should be told. So, my eye’s clicking. I love it.

Vicki S.:

Okay. Yeah.

Joslyn Brown:

I do want to ask you this question, since you did mention your daughters. How did your family handle hearing you have bladder cancer?

Vicki S.:

Well, of course, they knew I had the interstitial cystitis. Gosh, I don’t really remember any… I, myself, I didn’t cry about it. I knew something was up. I think I mis-told the story or I left out something. I had the large amount of blood in 2013. And then, I had a much less amount of blood in 2016, in August. So, I went back to the urologist, whom I should have been seeing yearly, but I hadn’t been. And that’s when the cancer was diagnosed.

Vicki S.:

However, when I had my surgery, my daughter started having stomach problems. And she was actually in the hospital at the same time and they couldn’t find anything. And so, we think it, probably, was the stress of the surgery. And I think it’s got to be hard for families to go through this, because they have these same nasty ideas about wearing a bag or what it’s going to be like for their loved one.

Vicki S.:

So, I think she probably internalized some of that and had a psychosomatic reaction. And we’ve talked about that. That, probably, was why she had to go to the hospital. But my husband was fantastic. He took two weeks off. Because I was so weak, I would be like, “I need that crunchy slaw salad from Trader Joe’s. Go get me three of those salads.” And he would run off to get the salads. It was so nice. But when he went back to work… He went back after two weeks. Well, I was in the hospital one week, so let’s say, three weeks after the surgery, he went back to work. And I still couldn’t drive. And so, many people had said to me, “Let me know if you need something. I’m there for you. I’ll go get it.”

Vicki S.:

And so, I would text people, “Can you get me a crunchy slaw salad from Trader Joe’s?” And invariably, they’d be like, “I can’t do it today, but I could do it Thursday.” And I remember one day, just bawling my eyes out, because I so wanted that salad and no one could get it for me. So, there were definitely hard moments. Also, I had a little, probably, three weeks of depression after the surgery. A few weeks after the surgery, it started, which is also not uncommon. But I got over that and I was fine. And knowing that it, probably, was from that, was very helpful, as well.

Joslyn Brown:

That’s good. I do want to go back a little bit. I know you said with the BCG, that was probably the hardest moment for you. So, what happened?

Vicki S.:

So, with the BCGv, as probably most people listening to this would understand, they feed it into the bladder. And you have to hold it in there for a certain amount of time. So, I would go to the doctor’s office. They would put it in. I can’t remember now, if I held it for an hour or two hours. I was very worried about that, would I be able to do it, because I was going to the bathroom every 12 minutes.

Vicki S.:

But I just set my mind to it. And fortunately, those two times when it wasn’t uncomfortable, I was able to hold it for the full amount of time. Oh, no, I think I was always able to hold it for the full amount of time. The problem wasn’t holding it. It was, once I urinated and it was out of me, oh, my gosh, terrible pain.

Vicki S.:

And that last time, the fourth time, I remember sitting on my bed, and just crying, and saying, “What have I done to deserve this, that this should happen in my life, that I would have to go through such terrible pain?” So, that’s when I told my doctor, “I’m done with the BCG and I’m ready for the cystectomy.” And he was very supportive and said, “You’ve given it a valiant effort. Let’s move ahead.” And then I switched to a surgeon, a wonderful surgeon, at Loyola. And yeah, then I was on my way.

Joslyn Brown:

One thing, hearing you speak, is you advocated for yourself. You made your decisions based off what you were experiencing. Would there be any advice that you would give someone else in the same position?

Vicki S.:

I’m a huge believer in that. I read everything my friends are going through. I’m an information junkie, anyway. And I just love knowing about stuff. I feel like, the more you know, even if it’s scary, you’re in just such a better position. So, I’m not one to run from the truth or run from hard truths. I had decided, I don’t know if it was before I started the BCG or right at the beginning, that I was ready for the cystectomy. I had the bladder disease. My bladder was shot. I was in bad shape. I couldn’t imagine that, even if the cancer was able to be under control, that I was going to have a happy life. So, I went to see the surgeon at that point in time and he said, “No.”

Vicki S.:

I was very cheerful. And I was like, “I’m ready for it. I’ve read up on it.” And he said, “No.” He said, “It’s a really hard surgery. And it’s long.” And he said, “I want you to go ahead and give the BCG a try.” And he doesn’t know this, I’ll have to tell him at some point in time, because I love this doctor so much, but I was so angry with him. And I was so disappointed, because I was just imagining getting rid of all this pain. And so, I waited then, from October until March. And when I went back to him in February and said, “I’ve been through the BCG and I’m done. It was too painful,” then he said, “Let’s do this thing.” And so, I think he probably did the right thing. He’s pretty great, in having me wait. But I just wasn’t able to do the full BCG treatment.

Joslyn Brown:

My next question would be, because you pretty much touched on everything, which I love. I just love it. How did you find BCAN?

Vicki S.:

Oh, gosh. How did I find it? I might have just found it Googling. I think that, I’ve gone on forums before, medical forums, so I might just have Googled, “bladder cancer forum.” I’m pretty sure, because none of the wonderful people who helped me, were acquaintances before, because I met them there. It’s possible that my urologist directed me. Or one of the people at his office. But I think it’s also possible that I just found it on my own. My approach was, “Okay, what if I do die of bladder cancer? How do I want these last months or years of my life to be?” Before I knew mine was contained and it wasn’t in my lymph nodes. However, I still have to get checked once a year and it could be at any moment. So, how do I want to go through that time?

Vicki S.:

And by golly, I want to go through it doing my best to live my fullest life. It doesn’t mean that I don’t honor scary feelings at times. But then it’s like, “Yeah, let’s get on with it. How do we want to be in this?” And we want to be normal, I guess. Take it as normally as we possibly can. Yeah. I think I feel like, in certain ways, I was built for this. I had a grim childhood. I’ve had difficult experiences in life. And I was never one of those people who said nothing would happen to me. “I would never get this.” I never even said, “When I get married or when I have kids…” I didn’t count on anything great happening. And I knew, probably, something bad would happen, because it’s life. It’s life on earth. And I think that, that stood me in good stead for this.

Joslyn Brown:

Yeah. When you’re used to disappointments-

Vicki S.:

Yeah.

Joslyn Brown:

… when they do come, it’s like, “Okay, I got through that situation in my life. I’m going to get through this, also.”

Vicki S.:

Right. I’ve had some, really, things one wouldn’t expect to happen in my life, really out of the norm. And if we weren’t recording, I would tell you. And so, yeah, to survive that and get beyond it, and even have a sense of humor about it. I haven’t done this for a while, but I will take somebody’s hand. And I will put it on my belly and I say, “This is the side with the bag. This is the side without the bag,” just to show them how it’s not a big deal. It’s not like a hot water bottle down there, thick. It’s like more like a sandwich bag, but made a little bit better. I will do that. But after my surgery, I was like, “Look-it, here’s my stoma,” because you always want to normalize what people don’t find normal, because it’s like seeing someone that is disfigured.

Vicki S.:

They only look odd when you first see them. But once your eye adjusts, that’s normal. And I think that’s really important in life, that we see all of the flavors and textures of life in the world, as normal. But we got to see them.

Joslyn Brown:

Yeah.

Vicki S.:

We got to put ourself in those positions, to see all those different people. And I think that breeds positivity and understanding. And I’m a complainer. I could, certainly, complain about things, but I guess, in the end, when the going gets rough, I can be pretty positive.

Vicki S.:

Another thing is, it’s important for women to know that you have to tell your surgeon, you want the clitoris to stay, because one person I know of, that was never discussed. And she woke up from the surgery and it was gone. And so, all her sexual pleasure was gone and it was never mentioned. So, it can be a hard thing to mention, but the difficulty mentioning it takes two seconds, versus losing that pleasure center for the rest of your life, should you wish to avail yourself of it.

Joslyn Brown:

Well, I don’t think we’ve heard that kind of feedback from women.

Vicki S.:

Yeah.

Joslyn Brown:

As far as the clitoris. I don’t think that’s something that’s been discussed. So, I’ll, for sure, bring it up in our meeting.

Vicki S.:

I always tell everybody, if you’re interested in this, make sure that you bring it up. And some people will be like, “I don’t care.” Or that it’s fine. But if you do care and if that was a part of your life, wow, you wouldn’t want to wake up. And now, that possibility is gone. And interesting, isn’t it? How much we care about men being impotent, but not care that much about women’s pleasure?

Joslyn Brown:

Says a lot.

Vicki S.:

One of those things. Yeah.

Joslyn Brown:

Well, it was truly a pleasure. I really do appreciate talking to you.

Vicki S.:

Thank you so much.

Joslyn Brown:

Thank you. Have a good one.

Rick Bangs:

That’s all the time we have for episode 18 of Bladder Cancer Matters. I would like to extend a special thanks to Vicki, for sharing her personal story and very positive attitude with our community. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters.

Speaker 1:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast, and additional information about bladder cancer, please visit BCAN.org.