Introduction

Margo W.: I’m a bladder cancer patient who is still cancer-free because I had access to great doctors [and] because I advocated for myself.

We know a fair amount about other kinds of cancer, but not so much about this one. Cancer is not something you want to learn about if you don’t have to so we all have big gaps in understanding what the journey is going to look like.

I had the opportunity to meet and talk with other patients. I love that I get to interview Vickie. She can share her experience and how much it meant to her that she had a bladder cancer mentor who [can] show her what life after [having] your bladder removed looks like. It’s not as terrible as you fear. You have no idea what to expect so that’s why I think it’s so important to share these stories.

We all have some similarities in our stories, but we also have unique experiences. One of the most valuable things to do is to help people not feel alone and to remove a lot of the fear [and] the unknown so that we can see ourselves making it through that journey, get to the other side, and get back to living life.

I hope what it does is inspire and help people feel connected, understand, and reduce fear as we face a variety of different battles.

Vickie, if you had to describe yourself to someone who’s never met you before cancer, how would you describe Vickie?

Pre-diagnosis

Initial symptoms

Margo W.: What made you think about the pain that you were in? What about that told you [that] you needed to keep pushing for answers?

I didn’t feel well and had some pain. The pain was intermittent enough that it was reoccurring. It wasn’t every single day, but it was enough.

I had a doctor’s appointment coming up in September; May 2020 was when I first noticed that the pain was getting to be less intermittent and almost daily.

I did believe I needed to see my gynecologist and not my family practice physician. I realized that I needed to keep pushing until they would see me. But unfortunately, she wasn’t interested in an old woman that was having a little pain.

Margo W.: How did she specifically respond to you?

She responded by saying that all of my tests had always been fine. I hadn’t had any abnormal test results over the years.

Unfortunately, because I was 66, I had seen many gynecologists over the years from having my children. Then as I aged, these wonderful doctors quit taking patients.

The next thing was to get that next specialist. I called my friends and no one had a urologist in their phone book. My next step was to rely on this doctor.

I had to call three times to get the name and then the referral. Luckily, the referral was a gyno-urologist. She said, “I don’t think there’s anything the matter here, but just in case, we’re going to take some measurements. We’re going to go ahead and do a CT scan. We’re also going to do a cystoscopy.”

I’m freaking out on the table. “What do you mean? Why do we need a CT scan? Doesn’t that mean cancer?” She said, “Oh, there’s no chance of you having cancer. That’s an old man, smoker’s disease.”

I did smoke for a short while in my 30s, but I hadn’t smoked then for 30-something years. “It’s probably nothing, but let’s do the CT.”

The next step was to make the appointment. No one in Austin could see me for at least two weeks. I finally found a place out in Cedar Park, which is a good 30 miles away.

It was daunting and because it’s COVID, I have no one with me. Everything that I did, I’m completely by myself because no one was allowed with me. I’d have my phone with me and do a conference call. 

I was by myself. I’m just going, “Please don’t tell me this. I don’t know what that means for my life because I am super active and I don’t want to stop.”

I took his information. I said, “What about a second opinion?” He goes, “Before we get there, I want to do the cystoscopy.” He was putting me out [for] two more weeks. I said, “Nope, I need you to schedule me next time you’re doing this procedure. Please work me in. I beg you.”

He’s 35 years old at the time. He’s my daughter’s age. I’m just going, “I don’t believe this doctor knows what he’s talking about,” but he does. I knew it, but I didn’t want to know it.

We [did] the cystoscopy two days later. He came out and said, “I can’t do anything for you but chemo and remove the bladder.”

Going to doctor’s appointments alone

Margo W.: You are doing all of your doctor appointments solo. No one could go with you. What did that feel like?

I’ve always been independent so, at first, that didn’t bother me. But the day that Dr. Laviana said, “You have cancer and this is what has to happen if you want to live,” then I needed somebody. That is the moment I wish somebody had been with me.

I’ve been with my partner for 13 years. We’ve known each other for longer. At that moment, I needed a person so that I could find out, “Is this reality?”

Anyone that’s ever had this kind of news, it’s hard at that moment to say, “Is this really happening?”

I have tried to eat right, stay fit, [and] do everything to be healthy. I always thought it would be a heart attack or a stroke. I had no idea it would be a tumor that I would have to face.

Reaction to the diagnosis

Margo W.: I feel so comforted knowing there’s another woman out there who’s been through [something] similar. You want to have as many people close to you as you could. You were jotting down what the doctor is telling you. What was that like for you?

This is a business now. My body is my business. I had run a business and I thought I now have to take care of everything. Even though I’ve got these folks that I’m relying on to listen and hear, I have to make these decisions. No one else is going to make them for me.

He told me, “Yeah, you could just go on with your life, but in five years, you’ll be dead.” My imagination [started] running around. I would jump from, Okay, so I just die. I had a good life. All right. Just throw in the towel and have this horrible cancer in my body. But then I thought, I’m not quite there yet. I still have a lot to do. I don’t know what it is, but I have a lot to do.

My daughters are very important to me. We’re very close. They both live in Austin. My partner and I, we’ve traveled. We have great times. We do a lot of volunteer work. I thought, I need to just keep plowing away.

I don’t think I got depressed. I’ve always found a way to not feel that I can’t handle it. I just told myself this is my new job. My new job is Vickie’s body. Clearly, it wasn’t a good business. I didn’t choose this business. There [are] other things I would have rather been doing, but I just hung in there.

I don’t know how else to describe it. I didn’t cry until chemo. Once chemo hit, then I started feeling sad because the changes were taking place. I didn’t care for the way I felt physically. I didn’t have the energy that I always have. I couldn’t even walk a block down the street and I’m used to walking five miles and hiking.

After I told my daughters, I reached out to some friends and one of my friends happened to have aunts and even her grandmother that had bladder cancer and they lived into their 90s. I was like, “Oh, Lord, this is good news.” Then she said, “One of my dear friends from Corpus Christi was diagnosed years ago and she’s about your age, Vickie. You need to talk to her.”

That was probably one of the best conversations I had throughout the journey because Toby is the one who said, “Dr. Kamat, he’s the man. He did my surgery 15 years ago,” and told me exactly what she went through. That was eye-opening.

I got in to see Dr. Kamat and all of those teams of people there. It’s daunting, but it’s amazing, the expertise. Even though I think my doctor is an expert and I’m really glad I have him in Austin, I knew I had these folks and that I was in excellent hands.

[I’m grateful] to have modern science and these two facilities so close to us.

Our mutual friend, Dorothy, and her husband dropped by and brought me the BCAN swag bag. We have the Bladder Cancer Advocacy Network’s coffee cup, brochure, and brochures for the whole family. A wristband that I still wear every day, as does Mitch, my partner. That was really good for me to be greeted into this new community of bladder cancer survivors.

They are my earth angels, Dorothy and John, and the whole BCAN network.

I don’t know what I was picturing. I was picturing another set of organs on the outside of your body. And it’s really not that big.

After seeing Dr. Kamat and that wonderful team at MDA, they were saying the exact same things that Dr. Laviana was saying in Austin.

We had to go [to MD Anderson] twice because the first time, they wanted their very own COVID test. We went down on a Sunday, got the COVID test, turned around, went on a Tuesday, and stayed through that Thursday.

Dr. Kamat, bless his heart. What a physician. He wanted all the tests new. He knew what he saw, but he said, “I’m going to go in and I’m going to see what I find.” All the tests were redone.

He and I talked about neo because Dr. Laviana knew I wanted that. As soon as he told me about the neobladder, I was right on it.

Then Dr. Kamat, his group, and the oncologist there, Dr. Campbell, are looking at me going, “Are you sure you want the neobladder because you’re super active? It takes about a year to ever even figure out how to avoid having these accidents. You’ll be wearing a diaper for at least six months and maybe longer. You will [catheterize] yourself daily.” 

I had catheters when I had my children. I am done with catheters. I can’t do that. No, I’m not catheterizing. Up until the day of surgery, Dr. Laviana thought I was going to do it. He said, “Oh, neobladder.” I said, “No, I’m not doing it. Too much.”

The third option is the Indiana pouch, which Dr. Kamat recommended not doing [because of] your chances of having infections. That’s the other reason I didn’t want the neobladder.

[With] the Indiana pouch and the neobladder, your chances of having numerous infections the rest of your life, like UTIs, it’s a great percentage.

The last part of that is you can get cancer in your neobladder or the Indiana pouch. I thought, If I’m going to do this, I’m going to try to erase all chances as much as possible.

Margo W.: Can you describe what an Indiana pouch is?

As far as I understand, from the people I’ve spoken with, they also take a piece of your intestine. They’re hooking up your ureters to another piece of your intestine. But instead of it coming out for an ostomy pouch, it stays within your gut.

It is similar to the neobladder, but you do catheterize at least twice to three times a day to void your urine.

Chemotherapy for bladder cancer

Margo W.: Talk to me about chemo and what you ended up doing. How long you were in? What was that like and how did you feel about it?

The one that I wanted was the dd-MVAC (dense-dose methotrexate, vinblastine, adriamycin, and cisplatin). You go in one day and they give you two of the drugs. Then you go in the second day and they give you the rest of them. That’s for two months, two times a week, every other week for two months.

I went to Texas Oncology. I was very fortunate that Dr. Campbell, the oncologist at MDA, was a resident with Dr. Yorio at Texas Oncology so he actually got my appointment.

I was just about to start it with UT Dell. They didn’t even have the drugs on hand. They were going to have to order it.

They did the port. After a while, especially [with] these drugs, you might have trouble finding that vein. 

Side effects from chemotherapy

Margo W.: How long was each session of chemo? How did you feel after? 

Day one was about five hours and day two was about eight.

I lucked out. [The] very first day that I went to Texas Oncology, I had a nurse. She was this little firecracker. She was giving me all these facts and saying, “This is what exactly is going to happen. In 14 days, you will lose your hair. In a couple [of] hours, you’re going to feel like this.” 

I made this joke about [a] John Prine song where when I go to heaven, I’m going to have a ginger ale and vodka. He has this wonderful song about dying and what’s going to happen when he goes to heaven.

She just said, “I want you to go home and have a ginger ale and vodka tonight.” I was like, “But I’m not drinking. I’m trying to save my organs.” And she goes, “No. You need to because you’re a nervous wreck, I can tell, and this will help.”

I got ahold of my partner and said, “Hey, Mitch, stop at the store and get me a ginger.” I was drinking ginger ale anyway, but it was just funny how that was my first day.

My first impression [was if] this is what it’s going to be like, no problem, right? That first treatment, I went, “Well, that’s not too bad.”

Then I saw that I was going to take seven other pills. Again, modern science [is] amazing. In the hospital, they’re going to give it to you on IV but the second you get home, you start taking these pills and you do that every other week.

Margo W.: Did you ever have mouth sores? What was that like?

It was horrible. It was just like my oncologist, Dr. Yorio, told me. He said, “They’re ulcers, Vickie, they’re sores. And if you don’t treat them, you can get infections.”

I did the baking soda salt. Mitch would even mix it up. They add milk of magnesia to it. They pour all this stuff together and you’re supposed to swish it and swallow it because your stomach also has those sores. 

Mitch is a great cook. He would fix these meals and I just take one bite and say, “Honey, nuh-uh. I got to have macaroni and cheese if I could even stomach that.”

But my best friend was Mexican Coca-Cola. I don’t even drink Coke but Mexican Coca-Cola was the most soothing drink. I didn’t drink much of it, but it settled my stomach. I felt like I had eaten. It was filling me up. I guess it reacted with those sores because it didn’t hurt to drink it, whereas just water would kill my mouth.

I finished chemo [in] mid-January. I saw my general practitioner in May. He did the blood work [and] he goes, “You know that you’re borderline diabetic.” I said, “Yeah, because I’ve been drinking these Mexican Cokes. I promise I’m getting off of them.” And I did.

I quit cold turkey. I saw them at a store one time and went, “I have to have one.” I’ve got this feeling of I’m going to allow myself to have one. But I got off of them.

Self-image and cancer

Margo W.: Personally, I had to wrestle with who am I if I’m not a woman with long blonde hair, which sounds shallow, but it’s a part of who we are. Did your sense of identity change? What did you go through when that was happening?

Yes. My identity of being the strongest person in the room like, “I am strong. I can do anything,” was not that anymore. I felt like, “How can I guide anybody?” People come to me for information and guidance and I thought, I guess I’m not that person anymore, but I’m kind of getting it back.

My children and their friends rallied behind me. They come to me and I was freaking out. I thought, How am I going to help these young people if I am so ill?

Exactly six weeks after my surgery, when I could start exercising again, I was out there doing everything I could to get my physical strength back. Just getting older is scary because I don’t have the balance I used to have. I practiced yoga for over 20 years and I had the best balance around and now like, “Oh, I could fall over.”

When people say they fought cancer, that’s great. I don’t think I fought cancer. I wanted it gone. I didn’t want that to be my identity. I wanted it to be more of, “Okay, everybody, I’m here. I’m who I used to be. I may look different,” because I have to tell myself that. I’m not the same.

Living intentionally

Margo W.: I think that’s magnificent. You are now living better than you have before because that sounds very intentional to me. Tell me more about how that feels to be able to be in the present. Being intentional and present is hard.

It is, especially for me. I’m just always looking at what’s next, what’s next, what’s next. I still am that person, but I’m not as apt to think that everything has to be in its place.

I used to think I can’t even enter the room unless all this stuff is organized, put away, and everything has to be in its place. So there [are] a couple of things out of place. I’m okay with that.

To me, the word “now” is better than saying I’m in the moment. I’m trying to enjoy being out in the woods. I want to do more hikes. We’re surrounded by great trails here in Austin.

I’ve been trying to ride my bike more. I like volunteering. I was already doing Meals on Wheels, Keep Austin Beautiful, and other little town cleanups. But now it’s, “What else can I do? Where else can I get out of myself and help someone else?”

I did 10 triathlons. I’ve done all these things and I would have done more but I said 10’s a good number because it does involve a lot of training. That’s a lot of hours in my life training.

Now, when I go into these tests, I just have to say I’m going to be accepting. Obviously, there’s nothing I can do about it. I’m nervous going in. My blood pressure is probably super high.

Then I wait for those results. They come on my phone. I see them. I go, “Okay, Mitch, I’m going to read them right now. I’m just going to go [to] the office to sit down. I don’t want to be in bed reading this stuff.”

I start to read through it and go, “Wow. These are good numbers. It says they don’t see anything new in my lungs and other organs. Whew. I made it through another one.” I look forward to that day. I love hearing from people like you and Dorothy. Just positive that it’s gone.

Margo W.: Surreal experience. It’s an overused term, but it really does apply. As you’re walking around going to doctors and doing chemo, did you ever feel out of body? Like, “Is this happening? I feel like I’m walking in somebody’s physical body, but it’s not really me.”

Every time I get scanned. When they put the iodine in, first, I’m grateful that I can have iodine. I’m like, “Wow, at least I’m not allergic to that.” Then the next thing is, yes, I don’t know where I go, but I do feel like it’s not me, it’s somebody else’s body.

I’m going to come out of here in about an hour, an hour and a half. I’ll get my car and drive away. But each time, especially that scan.

I’m always grateful for science. I say thank you very much so we have the science and the machine that can look for these things.

My sister gave me this wonderful binder. It’s like a baby journal that had pages in little envelopes that you could slide things in, like business cards. I would take that. This helped me through the very beginning. Every once in a while, I’ll pull it out and add something, especially if I meet someone.

I really believe in writing it down. It doesn’t have to be journaling. It’s more of information and who’s helping me.

I realized I had people on a list that I was keeping abreast of what was going on. I did not put it on Facebook. I wanted these people to know that I was doing okay because they were going to hear about it and then I would get information from them. Stay informed.

Everybody has said, “You’re a warrior.” And then, “Oh, by the way, I’m going to drop off cookies,” or “I’m going to do this,” or “What do you need done?” That support is what carried me through even though I’m independent.

My mother, if she were alive, would probably say, “Oh, Vickie let you do that? Wow. She allowed you to?” My mom would have said, “How did you become so reliant on folks?”

Margo W.: Would you say that having a phone call or a FaceTime call with people you care about is as good as seeing them in person?

We have relatives in South America and Mitch’s son lives down in South America with three of the grandkids. They’re like mine. I just am in love with these children. We do WhatsApp with them and so I was already accustomed to doing WhatsApp before COVID.

When COVID hit, it wasn’t the same and I don’t think it can be the same, but thank goodness we have it.

I was imagining all the phone conversations I had with my children. They’re listening to the doctor give us all this news. My girls are listening to everything. Mitch is in the car listening. If we didn’t have that technology and I was by myself in there, jotting notes down, trying to remember everything, how do I tell them this is what I’ve got to process?

It is important to have Zoom and everything. But no, I don’t think it’s anything like having anyone in your house and saying, “Hi, come by for dinner,” or meeting them at a restaurant.

Margo W.: Is there anything else you want to share with people who are dealing with any part of this journey?

You must advocate for your body and for your family. You have to show up and tell them you’re not going to be blown off because that’s what it felt like. It’s a terrible journey.

As you have these tests or whatever they’re recommending, if it doesn’t sound soon enough, I say keep pushing it. Get in there. Go for it.

I remember seeing my general practice physician in February 2020. I went back to him and said, “Why didn’t you do a urine test that day?” He said, “You were in a hurry.” And I said, “I was not in a hurry. You’re a doctor. What are you talking about?” He goes, “No, no, no, I don’t think we did it because you said that you’re in a hurry.” And I was like, “No, I don’t like that answer.” So, of course, he’s not my doctor anymore.

COVID was hitting and I think everybody was afraid to keep you in the office very long because it was right before everything shut down. And that, I realized, was a turning point where I could have stood up for myself and said, “Hey, don’t you do a urine test? Isn’t that part of the physical?” Because that was my physical. That’s why I went in that day.

No matter if you’ve been diagnosed or not, you must advocate for yourself. I remember always thinking, I don’t want to insult the doctor. I can’t tell them what to do. But I do believe you need to stand up for yourself.

I really believe in second opinions. If you’re not feeling like this is the right answer, you’re probably right. It’s not the right answer. They’re not giving you the information that you know your body is telling you that something’s the matter.

If I had a class on cancer, that would be one of the first 101. Be your own advocate. Don’t let them blow you off, especially when you’re an old lady.

Margo W.: Regardless of your age. Advocating for ourselves is really key. I don’t think it’s 100% natural for a lot of women for a million reasons.

Thank you so much for sharing your story. It’s heartwarming to hear your story and I’m so glad you’re cancer-free as far as we know right now.