Margo’s Plasmacytoid Bladder Cancer Story

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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1st Symptoms and Self-Advocacy

Introduction

I thought, “Well, that’s not right.” I’m old enough that menstruation could not have anything to do with it, but women are often kind of swept under the rug when it comes to things like that. At any rate, it stopped. The afternoon was clear. Then the next morning, it happened again. A little bit of blood in the urine. Then I never had it again. That’s the only symptom I had.

I consulted Dr. Google, which is both a good and a bad thing. I immediately went to a lab and did a UTI test. Now you can get them over the counter, which is awesome. I was on extra alert and a little concerned. 

I have developed over the years a way of saying to myself, “I don’t have that information. If it is worst-case scenario, I will have plenty of time to stress and worry and fret over it. If it’s not worst-case scenario, why put myself through that in the meantime?” I tried very hard to hang on to that. The lab called and said, “Great news, it’s not a UTI.” I was like, “No, that is not great news. UTI would be so much better.”

I immediately started looking for a urologist, and for one that I could get in to see pretty quickly. It was 2 weeks out, so I made the appointment with the urologist, who had a good reputation.

How did you research and make decisions?

First, I call my friends. I say, “Do we have a urologist in the stable of providers?” We do the same thing with shoes. “I need silver platform shoes for a dance. Does anybody have one?” Nobody had a urologist. I did do some research and looked for health grades and a couple other things like that, and I did what I could for due diligence. He had a good reputation, and everybody seemed to love him.

I actually tried to cancel the cystoscopy because I was like, “Since there’s nothing on the MRI, I guess we can go ahead and say that it’s all fine.” They were like, “Sometimes it doesn’t show everything.” Then we ended up with a cystoscopy. That was after Christmas. That was actually a day before my birthday, on the 27th.

What was the cystoscopy like?

What I will tell you is that men complain about this a lot more than women do. It’s a little more complicated. There’s more acreage that has to be covered with a man, but they’re basically slipping a tiny tube with a camera through your urethra to head on into the bladder and have a look-see around. That’s being shown on a screen. It might have an easier term than that, but that’s what’s happening.

Transurethral resection of the bladder tumor (TURBT)

They again go in through the urethra and use whatever tools that they use to remove tumors. I imagine there’s cutting things involved. Then they send that off for biopsy to find out what’s going on with it.

Managing scanxiety while waiting for results

I focused on that I still had my kids at home and family to enjoy and everything else I could think of. I also had work, so I just focused on everything else that I could think of. Again, I’m flexing that muscle more and more and strengthening it to be able to put it off and say, “I’ll wait till I have more information before I freak out or get concerned.” I also discontinued Googling all this stuff at that point, which is what I advise.

»MORE: Patients describe dealing with scanxiety and waiting for results

How were you feeling?

I think this is probably the case for a lot of us. You’re thinking, “This cannot be. This doesn’t make any sense to me. Nothing about this makes sense to me. This couldn’t be more out of the blue.” Zero kind of cancer runs in my family. Lots of other stuff, but just not that. 

Smokers are associated with many kinds of cancer, and actually, bladder cancer is one of the things. So I’m like, “It’s not that.” Because in the meantime, I had done research on causes, trying to understand how we got here? I gave up sodas. I eat clean. I drink a lot of water. I exercise. I do all those things. 

I thought I had a contract with cancer. I will do the lifestyle things over here, and you leave me alone. I thought that I had made that arrangement. Cancer didn’t sign that contract, so it was void, and you just never know. I’m told by doctors that sometimes you can figure it out, and sometimes you can’t. Sometimes it’s just random, which is 100% unsatisfying. 

All of that’s going on in your head at one time. How did this happen? How can this be true? Come on, universe, higher being. I have enough character. I feel like now I am hogging the character. Somebody else wants to have a shot at going through something difficult. I’d been through a lot already in life. That’s what I thought. Really, another thing that’s really hard? All of that was going on through my head at the time, and it’s frightening.

»MORE: Patients share how they processed a cancer diagnosis

Talking to your kids about cancer

My kids at this point are 19 and 21. They’re adults. One’s in town. One is not in town. This is not news you like to break over the phone to people. 

Part of what made this hard for me telling my kids is that I’m their only living parent. When they were in middle school, their father died. I was not married to him at the time, but he died. There wasn’t a reason that he should have died, but he did. He basically died from alcoholism. He drank himself to death. 

That was a terrible experience for me to have to come home and tell them that their father had died. Not only was I thinking I don’t want to worry them because I am their only parent. Even though they’re 19 and 21, they still need parents and family. That was the biggest concern I had. How do I make sure that I explain this to them in a way that doesn’t feel as scary and life-threatening and doesn’t freak them out? 

I don’t want to mince words either. I don’t want to mislead them. I don’t want to sugarcoat it. Kind of choosing the right way to communicate with each of them. Now, at this point, that’s all I know about my cancer. I’m still thinking it’s garden variety, essentially, and this is going to be really inconvenient. That’s what I understood at that point.

Back up for a second. I went to see a urologist. At this point, what do I know? Do I know that there’s a urologist oncologist in the world? I know nothing of this world. I don’t know that I should be seeing an oncologist urologist. Who tells you that? Not your urologist. 

There’s a lot of this seeking information, gathering it real time while you’re experiencing it, trying to process it, trying to hold it together and figuring out what’s the best path forward. It, as you know, is a mind-numbing experience. It’s a soul-numbing experience. 

Without this experience, you may not have known to ask for a second opinion

I may not have. I’d kind of like to think I would, but I can’t say for a fact that I would. You don’t know what you don’t know. If you are aware and then you choose to not get that information, that’s on you. But if you don’t even know, it’s tough to say, “Oh, I should have gone and done that.” I’m really glad I did go get that second opinion from a specialist, who was a urologist oncologist.

At any rate, when the second MD recommended the blue light, I couldn’t find one here. I had to start doing research, and I found that there were 3 places nearby. One was San Antonio, and 2 were in Houston. What I did — and I think this is really smart — is always ask the people who know more than you do and ideally who know the most of any one thing. 

What did I do? I sent those names to the urologist oncologist, who was the specialist in my second opinion. I said, “What do you think of these?” He goes, “I can vouch for these 2 cases. I’m just saying, don’t go to the one in San Antonio.” He didn’t vouch for that one. 

The second kind is lethal. It is very rare, it’s fatal, and it always comes back. We have to do everything. If we do everything, we throw the kitchen sink at it, we can save your life.

Dr. Ashish Kamat

I didn’t know if he was going to read this email or not. He replied back through one of his assistants. “Here’s what I think.” He said these glowing, wonderful things. 2 years to the month later, he told me in person at this event, “I want the whole book, and I want it signed by you.” Okay, I’ll do that for you.

I’m thinking, “Yet another thing I had no idea was possible.” What’s the limit? How many is the most you can have in one place? 2? He said, “The first kind that you already know about will respond to BCG. The second kind is lethal. It is very rare, it’s fatal, and it always comes back. We have to do everything. If we do everything, we throw the kitchen sink at it, we can save your life.” 

Processing the plasmacytoid diagnosis

That is the hardest thing I’ve ever had to hear. You don’t even know how to react when that’s what you hear. Save my life? I’m fine. Look at me. I’m healthy. I don’t feel anything. 

He went on to explain that this second form is a plasmacytoid, and it does sinister things like cloak itself and make itself look like bladder cells to the other bladder cells. That’s very sneaky. That is one of the reasons it’s so hard to treat. 

Throwing the kitchen sink at it in this case was 4 kinds of chemo every other week for 8 weeks, followed by a radical cystectomy. That is the removal of the bladder and usually some other things along the way.

The importance of self-advocacy and getting additional opinions

As individuals who need to have access to health care, the best thing we can do is advocate for ourselves all along the way. That doesn’t mean yelling and screaming and saying, “Get somebody in here.” 

I think we almost have a passive acceptance and total trust of anybody in a white coat. Doctors are amazing, and I have huge respect for them and nurses and everybody who does all that work. But they don’t know each of us individually, and no one knows us like we do. I think it’s really important to listen to our instincts, to listen to our gut. 

I joked it was my spidey sense. [It] was like, “Oh, this doesn’t feel right.” Listening to that and then just keep getting information. Don’t accept no answers when you can get answers. Then always go to the very best that you can get your hands on, because they’ve seen the most cases. 

»MORE: How to be a self-advocate as a patient

They knew that because they see so many more. This is so rare. It’s like 1%, 2% of bladder cancer patients, but they see 4 or 5 of them a month. Which is just so many, relatively speaking, and there are very few survivors of plasmacytoid. They don’t often get to save their lives, because it’s also asymptomatic. 

Sneaky, asymptomatic, and 100% fatal and recurring. If you don’t know you have it, by the time you do, you typically don’t have much time left. I can thank the first kind for giving me the flowy tumor that there was to see to take me to the doctor, and then thank of myself for continuing to advocate and go to the best doctors I could find. 

Many doctors say, “It’s your prerogative, and you go do what’s best for you.”

That’s actually what my doctor said. It was a good thing. I would have done it anyway. That just would have been more uncomfortable. Probably most of them will say that. It’s important to not have an expectation that we’re not going to feel that. 

We’re thinking, “I’ve got a diagnosis.” The next thing needs to be to get a second, maybe a third opinion. If you feel this reticence or concern about how you’re going to leave the doctor feeling, that’s okay. Do it anyway.

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Treatment

Chemotherapy

That meant checking in the following week to MD Anderson on, I think, the 12th of March. My husband could come with me for that. Anyway, we knew that I would have 3 nights of chemo every other week for 8 weeks, followed by a 6-week break, and then a radical mastectomy in June.

The chemo plan was methotrexate, vinblastine, doxorubicin and cisplatin. What were the major side effects, and what helped with them? 

They are so great at handing you resources. I got a book this thick with what to expect when you’re having chemo. You read through it, and you go, “What, my fingernails could fall out? My hair is absolutely going to fall out, and there’s nothing we can do?” 

I’m a gal who has always had long hair, and I associated with me and part of my femininity — right, wrong or indifferent. Having it just taken away all of a sudden… Most of us don’t welcome that. When I see teenage girls shaving their heads for no reason, I’m like, “Don’t do it.” 

At any rate, it was so overwhelming to read all those potential side effects. I couldn’t really handle it. Most of that didn’t sink in. I remember sitting there with the oncologist March 2nd, that day that we got the news that this was big and bad, and we had to do everything. Another oncologist said we need to do [methotrexate, vinblastine, doxorubicin and cisplatin]. 

Dr. Kamat laid out the strategy. Now we’re into the tacticals of what it’s going to look like. I compartmentalize pretty well, and that’s handy. I know that it’s really important to not compartmentalize so much that you don’t deal with stuff. Part of it was that. 

Some of it s because I’ve been compartmentalizing, and now the greatest fear was in fact what was happening. Then the gates unloaded. If it is really terrible news, I will have time to grieve and be angry and sort through it and process it. That’s what I started doing right then and there.

Undergoing chemo during the pandemic

The first chemo treatment was in early March. That’s the last time anybody could come into the hospital with me, because we were in full quarantine after that. Every day, the nurses and providers were wearing more stuff, more masks, more plastic, all of that. It was just changing.

I don’t know if anybody remembers. It’s hard to go back to that. The president was talking about it, and they were trying to figure it out. That was the last time he came into the hospital with me. Every single other time — there were 3 other rounds of chemo for 3 nights, and then the surgery — he had to drop me at the door and leave. 

I just would accept the help. Accepting the love and support from the people whose love and support I had was essential. We had dogs, and so lots of loving on the dogs. There would be a time after at least a week that I would start to feel like maybe I could take a little walk around the neighborhood. I would do that if at all possible, and try to do as many normal things as I could think of to do.

Radical Cystectomy

Undergoing a radical cystectomy (removal of the bladder) for 7-8 hours

Finding the silver linings

Sometimes it’s so slim. It’s helpful, and looking for, “What do I have to be grateful for?” is a big part of how I have gotten through difficult times in the past. I called it the grateful game way back in the 90s, when I’d be like, “Okay, I feel like hell. I’m so depressed and frustrated. What can I think about that’s positive? What can I feel grateful for?” 

That’s a baseline, the core framework for how I navigate through the tough times. Also core to how I do that is to embrace what’s actually happening. I don’t try to stuff it, pretend like it’s not happening or “should” it somehow.

What were your options after the radical cystectomy?

The options presented to me were I could have a neobladder, or I could have the ostomy, so that’s 2. When we were with Dr. Kamat in that first meeting and he explained those to me, I said, “What about a pig bladder? Come on, we’ve got lots of different organs we can borrow from animals. Surely those would work.” 

He said, “No, those don’t work.” I said, “Okay, can you 3D print one?” Can we not use technology here? Of course, we’re not ready. We don’t have 3D printed full bladders, and maybe one day we will. Once I exhausted all the other ideas, I had to accept that these were my 2 options. 

What guidance do you have for someone getting a radical cystectomy? 

Changing perspective

The night before the surgery, I had a lot of feelings. I looked at my body, and I thought, “I’m never going to look down and see this again. It’s going to look totally different.” That made me sad. 

My brother said, “Well, think of it as getting rid of a body part that’s no longer serving you. This is your metamorphosis.” I thought, “Oh, that sounds a lot better than what I’m imagining, so I’ll go with that.” 

There may be some other things going on with her besides that, but that’s the problem with talking to people. Sometimes you hear things that upset you, or you think, “I don’t know if I can live with that.”

Just keep talking to other people, and keep going back to your doctors and asking them what’s physiologically going to be intact or not intact to understand. Allowing ourselves to be assertive and ask those questions, even if they’re a little uncomfortable, is well worth it. It’s our lives.

Hair Loss

Dealing with hair loss

I guess one of the things that’s good to know is what you can and can’t control. I couldn’t control that it was going to come out or when. By the way, it’s day 14, so that’s what I learned. That is when my hair follicles started hurting. 

I likened it to when you have your hair in a bun or in a ponytail for a really long time, then you take it down. It’s like the follicles go, “Oh no!” Only it felt like that a lot of the time, and clumps are falling out, so it’s different. I felt nothing the first week, hair-wise. But on day 14, when we were checking back in, a whole bunch came out.

My daughter was at home. Her hair was, I think, purple at the time. [Knowing that it was going to come out,] I said, “Hey, let’s just make it whatever. What’s the wildest color? It’s all going away anyway, so let’s just go be wild.” 

What comes up for you when you’re watching that video?

Part of who we are is how we look. We could comment on whether that should or shouldn’t be, maybe especially even more so for women. You see part of yourself that you expect to see and you define yourself as, “Okay, I am a tall woman with blonde hair that is long, and I can wear it in a braid or ponytail.” 

Then you see that it is gone. Now I’ve got to figure out a new way to look at myself, but I feel like part of me and my sense of self. That’s a blow, even though I know intellectually it’s just hair. What does it matter? Everybody loves me. Who still loves me? Who’s important? Nothing about that has changed. 

I get both how unimportant it seems, and yet I felt that it was very much a loss at the time. Also, I’m a woman in my 50s, and we’re doing everything we can to try to look as nice as we can and keep the gray and the wrinkles and all that at bay. A bald head is not a good way to do that. 

It’s rough. I think it was the emotions of seeing that happening and seeing the hair coming off. It’s a very literal vision of me losing part of myself. I was able to learn down the road how to keep myself intact as a result. But at that moment, that’s not how I felt.

My mother, may her soul rest in peace, would say to me, “Sometimes you make a joke of everything.” And I’m like, “Hmm, well, sometimes I have to just to get through everything.” If you can find humor in any little thing, then I think it’s a very helpful way to get through, because then you’re like, “Well, at least 1% of that wasn’t terrible.”

Reflections

Normalizing the conversation about sexual health effects

It isn’t comfortable to talk about for me, and I do want to help normalize this conversation. One of the things that we talked about at the Bladder Cancer Advocacy Network Think Tank ‘22 was that this is one of those cancers that’s below the belt. 

It’s a little bit embarrassing to talk about, a little personal and all that kind of stuff. That just makes it worse. That makes it harder if we feel like there’s shame involved with talking about the kind of cancer. I didn’t choose this. Nobody chooses this. 

We’re all putting ourselves out there and pushing our comfort level to help bring that conversation along. I was on a panel with 2 other men, and what I can share with you is a woman’s perspective and a man’s perspective. There’s more cancer, more bladder cancer in men than women. 

Both of them said that there was sexual dysfunction as a result of going through the treatment and also the surgery. One of them still had his bladder, and he said that that was the most important thing to him. I thought, “Yes, as it was to me.” 

But if they say you’re going to die if you keep your bladder, then you take it out. That’s what happens. Specifically, they were able to get erections. They were able to have orgasms. There were a couple of other [things], but it wasn’t 100%. Everything wasn’t 100% the way they’d like it to be. That was interesting to hear. 

Physical effects of treatment

When you’re removing the bladder, the urethra, the whole geography down there is pretty important. I don’t know where all the important bits and pieces and nerves are. I literally didn’t know whether I was going to be able to have fun or not. But everything’s still intact — the parts that matter are. 

One of the things that goes along with a radical cystectomy is that often the way our bodies are shaped, they have to take some of the vagina. They didn’t in my case. That can mean that you now have a shortened vagina, and intercourse can be uncomfortable. 

There are things that can be done to address that. Just go figure it out. There are all kinds of things. Go find out ways to do that and get the life you had back as much as you can. It just depends on your situation. 

Emotional effects of treatment

I would say for me, it was more emotional than it was physiological. I didn’t like being bald, and I didn’t like having a bag on my front of my body. Now I’m no longer in shape either because I’ve been through all this stuff. I feel like I’ve been run over by dump trucks. 

It’s hard to re-access the feelings of intimacy and the feelings of your sexual self. I think that’s been a longer journey than I would have liked. I think it’s personal. Again, grace. Give yourself self-grace. Part of me goes, “Well, there’s no time for that because now I’m 59 years old, and who knows how long I have? I just want to go ahead and hurry up and enjoy everything.” 

What other losses did you experience around this time?

I definitely had the, “I can’t take one single more thing,” because [I was] fighting this cancer alone in the hospital by myself. The week in the hospital after the surgery, tubes coming out of me all over the place, and people come in to poke and prod and all of that. The worst beds, the food’s terrible, the TV’s worse, and there’s nothing. 

I had my phone, but it was really hard. I really did think, “Okay, well, that’s it,” but that wasn’t it. The blows kept coming. It was like it was bad writing. This is not all going to happen to one person in one year. But it did. 

The next thing that happened that was a blow was the loss of my mother. I was sitting in the office by myself, waiting to see Dr. Kamat to find out if the chemo and the surgery had worked. This was 6 weeks after the surgery. I was waiting to see the doctor, so alone in the office by myself. 

I looked down at my phone, which I had on silent but not turned all the way off. It was ringing, and it said St. Vincent’s Hospital in Jacksonville, Florida. It’s actually the hospital I was born in. I thought, “That’s not good. That’s either my sister or my mother.” 

The doctor wasn’t there, so I answered the phone, which is not what you want to be doing when you’re waiting for the doctor to come in. First of all, it’s rude, and second of all, you need to be alert and paying attention. But I thought maybe it’s an emergency, and it was. 

Losing your mom

It was St. Vincent’s saying, “Your mother is here. She is dying from dementia. She has a few days to live. She can’t stay here. Also, by the way, she tested positive for COVID. She doesn’t have any of the symptoms, but she can’t go to a regular hospice place, and she can’t go to her nursing home.” 

So right now she’s homeless on a gurney, essentially, in the hospital, and I’ve got to deal with that right now. I couldn’t process that. I could not. I thought, “Really? Ridiculous.” I couldn’t process it, so I just was sort of stunned. I did my kind of compartmentalizing thing. 

I got that phone call, and that meant I had a lot to deal with all of a sudden. I had to deal with the fact that my mother was dying in a few days, and that meant I would never see her again because we were in quarantine, and she had COVID. That was a lot to process. 

I was her power of attorney, medical power. I forget what that’s called, but I was the one in charge. It was up to me to make those calls. I had the tactical thing of this list of really hard things I needed to do right then, which I couldn’t because I was waiting for the doctor to come in. 

Taking time to celebrate remission

That’s what we did. As we’re driving home and talking about celebrating that I’m cancer-free, we felt like we could finally exhale. For 6 months, we’ve been trying to save my life here. We didn’t know we were going to need to do that. Here we are doing that. 

Now we’ve done that. What, it’s over? It’s over, more or less. We wanted to give ourselves time to celebrate. We gave ourselves 2 hours to celebrate. Of course, there were times besides that. 

Experiencing more loss

Then I had to get on the phone and start finding special COVID hospice locations that I couldn’t go visit. None of us got to see her again alive, ever. The last time I saw her was the December before that August that she died, and that was impossibly hard. Then there was processing that grief and dealing with really tough things to manage logistically during the stupid lockdown. 

Then a month later, the family dog died. This was the dog that raised my kids with me. She was 14 and a half, which is really old for a big dog. I feel like she made it through the death of my mom. I feel like she hung on to get me through. That was really hard, and then that wasn’t the last one. 

Then my father-in-law died the following month, and we couldn’t go. My husband couldn’t go see him before either, so it had been January. We each had lost a parent after 8 months of not being able to see them, and we couldn’t see them before. We both had to do those absurd Zoom funerals, and you do the best you can. 

Getting through so much loss

It felt like I just kept posting, “Here’s another dead person. Here’s another terrible thing,” on Facebook. One of my friends is like, “Dear God, what is happening?” I’m like, “I have no idea, but it just keeps coming.” 

But here I am to live and tell about it. It turns out we can get through pretty much anything. I did tell myself at times, “Okay, you don’t live in a concentration camp, so it could actually always be worse.” 

I’ll share something else for all the parents out there. If your kid had cancer, what parent wouldn’t say, “Give it to me; I’d rather have it”? It was me, and I was really grateful that it was me and not my kids. 

They still have a life ahead of them, and I do too now, as a matter of fact. It could have been worse. It really could. I’m glad that it wasn’t them. I’m glad it was me and that I’m here to tell about it.

You filmed a video as Wonder Woman. What did that mean to you?

I thought, “Well, maybe this will help me process it, and maybe it will be helpful, because here’s a real person who’s actually needed to use it and what it looks like when you need to.” 

I was really surprised by how emotional people felt as a result of hearing me tell this story. That really took me aback, and how caring and loving. To this day, 2 years later, I still tell the story, and they still respond in the same encouraging way, saying, “Thank you for sharing that with us. It’s inspiring.” 

I thought, “If that is inspiring to the handfuls of people that I’m presenting to, maybe I could put it in a book and share it with even more people. That might be helpful for them as well.” My goal was to write a book that was easy to read and that would show people how I personally [got through it].

It’s just one way to get through all this stuff, but it has the little tips and tricks that I used to get myself through this really tough time. [My goal was to] give people hope that they can get through it, even when it looks like it’s insurmountable and impossible. Okay, feel that way. It feels that way. It does, and you can get through it. The book came out in July, and I couldn’t be happier.

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