Transcript of Battling Aggressive Bladder Cancer in the Era of COVID – Margo’s Story

September 9, 2021

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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 by, for, and about the bladder cancer community and sponsored by Merck. Today I’m pleased to introduce a recent interview that BCAN conducted with Margo, a 58-year-old bladder cancer survivor. Margo was diagnosed in early 2020, just as COVID was beginning to impact the world. In a conversation with BCAN associate Joslyn Brown, Margot talks about how frightening it was to go through procedures, surgery, and chemotherapy alone because of social distancing. She describes what it was like to go from a seemingly healthy individual to intense red devil chemotherapy and eventually a radical cystectomy. Margo also describes the value of getting a second opinion for her bladder cancer diagnosis and how it saved her life.

Rick Bangs:

Some of you will no doubt connect the dots between Margo’s experience and three of our bladder cancer matters podcasts: Second Opinions, which was episode 12, COVID, which was episode three, and The Slippery Slope, which was episode four. Here’s the conversation between Joslyn Brown and Margo.

Joslyn Brown:

So I did read a little bit of what you wrote. So you were just diagnosed last year in the middle of the pandemic. Not a smoker, not exposed anything and no family history of cancer.

Margo:

No. Totally took me by surprise. I mean, I don’t think any of us expect to get a cancer diagnosis. But when you make certain lifestyle decisions, you know you’re rolling the dice. I kind of thought I had a contract with cancer. I’ll do the lifestyle things over here that are helpful, and you’ll leave me alone. I think I failed to get cancer to sign on the dotted line. So it happened and what my oncologist told me, like I’m sure they’ve shared with a lot of other patients is, “Oh yeah. Also, sometimes it can be random,” which isn’t satisfying.

Joslyn Brown:

No, No. Especially when you try to do everything to prevent it from happening.

Margo:

Right. Right. Right, right, right.

Joslyn Brown:

I’m so sorry. What symptoms did you have prior to your diagnosis?

Margo:

I had one small symptom and that was a little bit of blood in my urine, a little hematuria. It’s just the color of the urine. There weren’t clots or anything. I thought, “Well, that’s odd,” and that’s never happened before. So my first thought was, “Okay, well, I’ll go check out a UTI.” At this point I was 57, so I’m well beyond menstruation and all of that. I just took a sample down to the lab and said, “I’m a self-pay patient. What do you charge for a urine culture?” They said, “$12.” So I just did that on my own rather than go to the doctor. I’ve learned to go directly to the source. So I thought, “Okay, they’re probably going to come back with a UTI,” but I didn’t have any fever, I didn’t feel bad, I didn’t have any cramping, I didn’t have any discomfort. It was just that.

Margo:

Then they called to say, “Oh, we didn’t find any bacteria.” I thought, “No. I have searched the internet, and I know a thing or two about what this could be.” I did not like hearing that. I much would have preferred a UTI. So then I placed a call to my OBG. Maybe like a lot of other women, I kind of use her as my GP because GPs come and go in the networks, and she’s just the rock. So I called and spoke with the nurse practitioner and told her what was going on. She goes, “Oh, okay, well, let’s keep an eye on it. If it persists, then come back in.”

Margo:

Now, I should back up and say that I had this little bit of blood in my urine. The color was just a rose kind of color, a darker rose, and it was in the morning on one day, then it stopped. Then it was in the morning on the next day and it stopped, and that was it. That’s all there was. So by the time I had the culture and I got the results back, there were no other symptoms. I thought, “No, I’m not waiting and seeing. I’m not. I’m not. I’m scared by what I see that’s on the internet. There is nothing to be gained by waiting if it is something scary.” So I got right on the phone and found a urologist to go see. That was late November 2019. The urologist was in like December 17th. Everything was busy, and he said, “Let’s do an MRI and also a cystoscopy.”

Margo:

I thought, “Okay, but.” So the MRI showed nothing. On Christmas Eve we got the results back and it said, “We don’t see anything.” I thought, “Great. I am all clear. Good to go. I can enjoy the holidays now. My kids are home.” I even, like an uneducated patient that I was, called the urologist and said, “Since the MRI came back clear, I guess we don’t need to go ahead with the cystoscopy.” And they go, “Well, sometimes we see things in a cystoscopy that we don’t in an MRI.” I thought, “Oh, you’re a buzzkill.” But I listened to them, and we kept it. That was actually the day before my birthday, which was the 27th of December.

Margo:

So all this is happening over the holidays. I’ve got my kids at home. We’re trying to have Christmas. I’ve got my brother visiting. Meanwhile, I’m like, “Do I have cancer? Do I not have cancer?” It’s stressful enough. There’s no good time of year or phase of life to worry about this. So on the 27th, I had the cystoscopy, and on the 28th I met with a friend who has the same birthday. The 28th is our birthday. She happens to be a doctor, and I mentioned to her that the urologist saw a … He called it a lesion. So I thought, “That’s not a tumor because he said lesion.” He was being very nice. She later referred to it as a tumor. I’m like, “No. He said it’s a lesion.” I could tell he was concerned with the way he quickly … “We’ve got to send that off.” Then I was scheduled for a TURBT. Is that how you say it? Transurethral resection of the bladder, I guess. Did I get that right?

Joslyn Brown:

Yeah.

Margo:

That was the first week or so of the 10th, I think of January. I was hopeful because there’s plenty of growths or even tumors, I guess that aren’t necessarily cancerous. That was not very fun. Having a catheter is no fun. Recovering from that’s not really a good time. But anyway, did that. Then on the 16th, so a week after the procedure, we went back for the review I guess. He goes, “Yeah, you have stage 1 high-grade urethral carcinoma.” That’s pretty stunning whenever any of us get that news. My urologist is highly regarded. He’s somebody that people think of highly in Austin. He’s not also an oncologist. At that point, I don’t know the difference in when you should see one or the other or that there are … You don’t know anything about this world when you enter into it, and you really don’t want to know. You’re like, “I don’t want to need to know, and I don’t even know what I don’t know.” I think that’s a really common way that we experience this.

Margo:

My healthcare plan is a little unusual. It happens to be one that I had before I joined the company that actually sells the plan. One of the things that I really like about the plan is it includes a free second opinion service. I had no idea how valuable that was. I knew our plan included it, and I thought, “Well, I’ll go ahead and do that. It doesn’t cost me anything. I may as well.” But what the urologist had recommended was with this stage 1 high-grade, grade 3 aggressive, he was recommending BCG immunotherapy. Immunotherapy sounded, when he told me what it was like, it sounded to me pretty inconvenient, probably not very pleasant, but it did not sound life-threatening. He went through what the next two to three years were going to look like, and I had a little bit of a pity party for myself. I thought, “Well, it’s just one more thing I have to overcome. Fine. I’ll … Whatever.”

Margo:

I walked into that second opinion service, it’s a virtual call even before … So January 16th, that end of January, it still wasn’t a pandemic. I don’t think we had any cases in the US yet, just to think about the timing. When I look at this, the timing is really, it’s like it’s bad writing. So at any rate, it was still a virtual call with a board certified oncologist/urologist specialist. So somebody very focused on this area. He said, “I don’t recommend that we continue with the BCG therapy just yet. I think you should have another TURP, but with blue light technology, because there could be cancerous cells still in there lurking around that we don’t see, but with blue light that we can.” He said about a third of the time, stage 1 is really stage 2 because of that, and the treatment protocols are completely different for stage 2.

Margo:

I thought, “Okay.” So then it was, “Who do I go see?” I started looking into who are the best oncologists/urologists in my area. I’m in central Texas, so we’ve got MD Anderson down the road and also Baylor Scott & White. But when I started looking for who are urologists who even perform the blue light TURP, there were zero in Austin. Austin has over two million people. This is not a tiny small town. When I talked to my doctor about it, he goes, “Yeah, that’s the future. But none of us have the equipment to do it.” I thought, “But this specialist is recommending I do it. I’ve got to go find somebody who does.” I researched and found that there were three in a three-hour area drive of where I live.

Margo:

I sent the names of the three to the oncologist/urologist specialist who did the second opinion and said, “Who of these do you recommend?” He very kindly said, “I recommend these two.” So he did not recommend the third, but he didn’t come right out and say it. I thought, “Well, if one’s at MD Anderson and one’s at Baylor Scott & White, I’ll just submit my files to both and see what happens. “All of a sudden, MD Anderson appointments started showing up in my inbox. I didn’t know how this all worked, but they basically had taken my case is what that meant. I thought, “Well, they’re the number one ranked cancer hospital in the US most of the time. I’m going to just go there.”

Margo:

So those appointments were scheduled pretty far out. So this is late January, and the appointments were scheduled for March 2nd, which sounds … I mean, February’s short, but that’s still, when you’ve got high grade, we should check into this, get another second opinion, and you don’t know anything about cancer, you don’t know if a few weeks makes a difference. Am I going to progress to stage 2 or 3 in this amount of time? I don’t know how it works. So it’s really stressful. I know it has been for anybody who goes through this to wrestle with, “I don’t know.”

Margo:

Also, I don’t feel bad. I don’t feel different or bad. My energy’s the same. I still haven’t had any more blood in my urine. It feels like nothing is going on. I think that’s one of the most surprising things about a lot of the cancers. So we know that early detection is the best medicine, and yet if you don’t have hardly anything to go on, then it’s harder to get early detection. So I was really grateful that, at this point, that I’d paid attention and I jumped in and said, “No, I’m going to go have this checked out.” I was really grateful I had a plan that said, “You should go have the second opinion,” and I was really glad I had access to MD Anderson. So a lot of, as I just learned, I’m bumbling my way through this experience.

Margo:

My daughter turned, let’s see, so 2020, she turned 19 on March 2nd. She was in college at her first year at Colorado State, which was about to be … We were about to hit the pandemic at this point. So March 2nd, there were 66 confirmed cases. I’m sure there were way more than that, but confirmed cases reported at that time. Still not a pandemic, but they’re thinking it’s about to be a problem. So March 2nd, we went to MD Anderson, and my husband came with me and he came inside. We were not wearing masks. The doctors were not wearing masks. I think Tom Hanks and his wife had just been announced that they had it and they were in Australia, whatever. So everybody’s still going, “What is happening with that right now?”

Margo:

But meanwhile, we go in and we have the appointment and you wait and you wait and you wait. You do a lot of waiting. I think one of the things that they sort of train you at MD Anderson and maybe at other places as well is they say, “Look, we will take our time with you when it’s your turn. So please be patient while you’re waiting.” And that is the case. So Dr. Ashish Kamat is a rock star. He’s one of the best. He’s amazing. That’s who I got to see. First you see a couple of other doctors who come in, and it’s residents and you talk to them and then waiting for him to come in took about 30 or 40 minutes. I just sat there and did some deep breathing. Like probably most of the world, I’ve started working on kind of meditation and mindfulness and breathing, and I get really bored really fast. I just go, “Yeah, deep breathing,” but I just kept inhaling and exhaling slowly for I don’t know how long. It was a long time.

Margo:

I still didn’t know what was coming. I still didn’t know, but it’s really nerve-wracking. I still assumed we were going to proceed with blue light technology TURBT the next day. But here’s what happened. When Dr. Kamat came in, he said, “We are not going to do that because we looked at the pathology reports.” The same exact slides of the pathology, same exact data that my Austin doctors and pathologists looked at. The MD Anderson doctors and pathologists saw something that the Austin doctors missed, and that was a second variant of the cancer in the bladder. I didn’t know you could have two kinds in one place. They said it was plasmacytoid. It’s extremely rare. They said it only occurs in 1% of bladder cancer cases, and it’s really bad. It is always recurring. It always comes back, and it’s fatal. Always. That is some sobering news to hear.

Margo:

Your head is just reeling. You’re going, “What is this bizarre reality, this alternate world that I’m in all of a sudden? What am I hearing?” Your nervous system just kind of goes into emergency management mode, and you kind of take the feelings and you go, “You, feelings are going to go over here and we’ll come back to you later. Right now, we’ve got to triage a situation that is really scary.” So I listened to his words. I heard him say, “So we’ve got to do everything because if we don’t do everything, you won’t be alive. You have maybe 12 to 18 months.” From, we’ll keep an eye on it a month-and-a-half before to, “We’ve got to do everything. And everything he said was, “Chemotherapy, we need to do surgery, we need to do radical cystectomy and trials, if there are any that you qualify for. And we need to start soon.” My head was just reeling, and my husband was there and he was holding my hand and I’m just squeezing his hand for support. I said, “Okay. We’re going to do all the things then.”

Margo:

When you hear that news and you hear that, that’s the recommendation and you hear that if you don’t do that, you will not survive, then you make the decision kind of before you’ve really processed it. The frontal lobe part of your brain says, “This is what makes sense. We have to do this. We’ll deal with what it feels like and process it later.” I feel like that’s what happened to me. I said to Dr. Kamat, “Okay. Well then we do all the things. We do the kitchen sink.” My husband said, “Well, that’s just like Margo to man up and do what needs to be done.” And Dr. Kamat said, “Actually I would call it womaning up because I see that the women are more likely to just take the stand of we’ve got to do this. Let’s proceed now. They are stronger typically.” That’s what he said. I thought that was really interesting.

Margo:

So now we’ve got a radically new plan, and it had to start the next day with he wanted to go in and do a final TURBT to make sure that he was convinced that everything was gotten, this was still stage 1, and that this was still the right plan. So we did that the next day. Then I was sent home and he said, “Yes,” he confirmed that, yeah, still stage 1. That’s good. Then I also met with Dr. [inaudible], and she seemed to be the oncologist in charge of the chemotherapy. I listened in just total disbelief as she described the four different chemicals that they were going to use. She was very sweet.

Margo:

We talked to two other doctors. They were all really kind, every single one of them. When I said, “Well, what percent of the cancer cases that you see are the wrong diagnosis?” Each of them said 70%. 70. 70% of the time they see the diagnosis is wrong, or in my case, incomplete, which is wrong. Had we done just BCG therapy, BCG, is that right? Yes, BCG, the immunotherapy, it would have treated the first kind of cancer that I had. It would not have treated the plasmacytoid. So I just would have died after treating … Yeah, just crazy.

Margo:

Now, we all have a reason that we take on this fight, and it’s because of the people that we love close in our lives. In my case, I have this husband, we’ve just now, we’re coming up on five years. I was 53 when I married him. So I said, “We have to celebrate 50 years. We’re not going to look good at 103, but we’re going to get to celebrate our 50th anniversary.” I didn’t say five. I said, 50. Come on now. I have two kids and they at that time were 19 and 21. They already lost their dad when they were in high school. Those are my why. My kids and my family, like a lot of people. So I thought, “I’m not done. I have to do this.”

Margo:

Meanwhile, the local Austin doctor’s office was calling me to say, “We’ve got BCG therapy. We could get you started next week.” And I thought, “Well, I’m not going to do that. I just learned this very sobering news that I need to do all these other things too.” What’s interesting is when you get a second opinion and they lead you down a different path and say, you need to do this or you will lose your life, you still feel, or I did anyway, I don’t know what other people feel like, but I still felt like I wanted to protect the feelings of my highly-regarded doctor here in Austin even though he didn’t catch everything. I didn’t want to hurt his feelings. I was aware of not wanting have to break the news to him that I didn’t want to disappoint him. It was really a weird thing. I think I’m probably not the only one who’s had that experience. “Sorry, but this other doctor, I mean, you’re fine, but he’s better.”

Margo:

So I’m glad I got access to the good ones. So we set it up and we started chemo the following week. I think I checked in on the Thursday. By then there were a few more cases. I don’t recall what it was then. I think it was a few hundred by then, and everybody wore masks. My husband got to come with me for that round of chemo. Everybody had masks on by that time. They didn’t have us wear masks, but they did by the time I checked out four days later. So at this point, things are rapidly evolving with COVID. My husband got to stay with me.

Margo:

You start off with a drip of, I don’t even remember which the ones were, but they start with, I guess, the easier ones and gradually work up to the red devil, and that is the … what is that? The doxorubicin? That one, I think? Might have that right. But they call it the red devil and by then you feel pretty bad. You’re bloated, I had a headache by Saturday and it just gets worse. They said, “This is a very aggressive chemo regimen.” So I was there four days and three nights, and it’s four types of chemo that takes 20 something hours and then 11 hours of hydration after that. Then I basically just crawl to the car, lay down, sleep on the way home, and then sleep for another couple of days. Feeling pretty lousy. Then you start to feel better like chemo does.

Margo:

Meanwhile, my son has come home for spring break. Spring break, and he’s learned that due to what’s happening with COVID, they’re going to put off coming back to school a week. So he’s thinking, “Yay. Spring break is two weeks now.” Little did he know. Meanwhile, my daughters come home for spring break, and the world is coming to a screeching halt.

Margo:

On the off weeks, I would have to go to … I just chose to go to a local oncologist’s office to get my blood work done to make sure I was surviving the chemo because it’s pretty aggressive and make sure I was healthy enough to be able to go in the next week. When we went into the local oncologist’s office that off week, so the teens of March, we wore masks, but they didn’t. That was interesting. This was happening at, this is real time, happening with this pandemic and the local oncologist did not. When we walked in we had our masks on, the nurses asked us, “Why are you wearing masks?” I thought to myself, “Why are you not?” They go, “Is it because of the COVID?” I’m like, “Yeah. I’m in chemo so I’m immunocompromised.” It just was astounding the difference between one cancer hospital down the road and another one at the very beginning. Everybody was trying to figure it out.

Margo:

But the doctor did come in wearing a mask, which I appreciated. We went through. My blood work was good and away we went. My next round was two weeks after the first round, and by then there were no visitors allowed at all at MD Anderson. He couldn’t come in, nobody could come in with me. Unless you couldn’t walk on your own, you couldn’t have one soul with you. That was the case through the rest of my treatment, which was terrible.

Margo:

So he had to drop me at the door. It’s already hard enough to go in for that treatment. Walking into a cancer hospital is not a good time. You’re glad you’re getting the treatment, but it’s hard. It’s emotionally hard. It’s physically hard. Anyway, he dropped me at the door and I put my mask on. I grabbed my things. I kissed him through my mask, and I went into the entryway and they had a protocol set up. So it was, here’s a new mask, wash your hands, get in line, stand six feet apart. They’d set up plexiglass, temporary desks, and they had it all mapped out. What’s interesting is every time I went into that hospital, it was different. It still is to this day. I mean, a week ago I was in there for my annual checkup and got the all clear, and it was different yet again. It’s never been the same two ways that it’s structured to process patients coming in.

Margo:

But he couldn’t come in with me at all. So I was there for the four days and three nights for rounds two and three and four all by myself. I mean, the staff is great at MD Anderson. They’re so caring and nice and they know that we’d all like to have people there and we don’t, but it’s upsetting and hard and you aren’t comfortable. The food’s terrible, and then it tastes worse because you’ve had chemo. So each time you feel worse and I would crawl out of there and into the car and sleep on the way home and have to sleep more at the end of each time.

Margo:

So I noticed at the second round it felt like my hair follicles hurt. That’s how I described it because I don’t know if that’s what’s happening, but that’s what it felt like. So it hurt. And I still had long hair. I dyed it pink because I thought, “Whatever. It’s coming out anyway.” It was long. It was way down to here. My daughter dyed it with me. And then after that second round of chemo, it was time for it to come off. So we cut it. She helped me shave it. I kind of had a GI Jane sort of thing going on until the rest of it fell out. Then I would recover as best I could and go through the next round and the next round. Meanwhile, cases of COVID are going into the hundreds of thousands at this point, and the protocols are getting more and more strict and still couldn’t have anybody with me. So four rounds, eight weeks total put us into May, and then I had six weeks of a break. Then I had the radical cystectomy on June 10th of 2020. Nobody can be there for me without either.

Margo:

That was the radical cystectomy. They took the bladder, they took the cervix, they took the uterus, they took some lymph nodes. In my case, they left ovaries and I kept wondering, “What do they attach to? Are they floating? In there floating around?” I don’t know. I know very little about the inner workings of my own body. I mean, it’s an amazing surgery that they remove all that stuff. They remove a section of your intestine, stitch that back together, create another little tube and connect your ureters to that. For me, it’s level with the belly button. And that is a very upsetting thing to wake up to. It’s very upsetting to get used to that.

Margo:

But anyway, I did and I had to go through … That’s a very uncomfortable thing to recover from, and with the opioid crisis, they do not give you good drugs anymore in the hospital is what I found. So they’re like, “Yes, you can have more Advil.” If Advil helps, I don’t need the help is kind of how I am with pain. So it was horrible. It was a terrible time and they kept me another day. So it was six nights, I think. I just thought, “I’m going to run out of here, kicking and … Well, I’m not going to run because I feel terrible. I’m going to walk slowly out of here, kicking and screaming and caring for that thing,” and all the stuff, what your body needs and what’s happening after that surgery is just miserable.

Margo:

There were times when I thought, “Really I can’t do it. This just isn’t worth it. et me go,” is part of what I felt. It’s just miserable. But when it was time for me to go, to leave and my husband, they allowed him to come in to pick me up, I just sobbed. I was so happy to see him and have company through this really difficult, vulnerable, hard time. Then you don’t know if it’s going to work. You hope it does. But my doctor said there is no more radical abdominal surgery than what I had done. What I’m sure a lot of bladder cancer patients have had done. As a result, I am now cancer-free. I had to go back every 90 days to have all the tests done and make sure. After my last set of every 90 days was a couple of weeks ago, they said, “You look good. Good to go. We’ll see you in January.”

Margo:

That is a big moment to be able to not have to sweat 90 days. And to know that I’m still cancer free. It’s an amazing thing. Meanwhile, so another thing that I think is pertinent to understand is all of this was going on when COVID was. It was really, really hard. I really leaned on my network. My friends, my kids were great. A lot of their friends were not taking COVID seriously. They were still going to spring break and doing other things, but mine saw what was going on with their mom and they got vaccinated as soon as they could. They were very respectful and loving and caring, which is great.

Margo:

So I went back in early July, after the radical cystectomy to see how everything was going. That’s the first check-in. As I was sitting in the waiting room, waiting for Dr. Kamat to come in and let me know whether I was cancer free or not, I got a text. I was getting phone calls from the hospital where my mom was. The nursing home she’d been in had taken her to the hospital that morning. So I’m waiting to find out if I’m cancer-free, and I’m getting calls from the hospital and they’re saying, literally the doctors were saying, “She has days to live,” and that was unexpected. So processing both of those things at the same time, I don’t have any words for what that was like. Again, I’m still sitting there by myself because no one is allowed in with you. So I’m still sitting there by myself and getting these calls and just thinking, “Well, I can’t take the call about my mom dying because I’m waiting to find out if I am not dying.” That’s what was happening.

Margo:

That was my reality while COVID was going on. It was terrible. So they said, “She’s got days to live, and you need to call hospice. Oh, by the way, she’s COVID positive, although that is not what she’s dying from. She has no symptoms. It is dementia that she’s dying from.” Hospice at COVID, that’s a whole nother universe. She’s in Florida. I’m here. I can’t fly there. There’s nothing I can do. I can’t see her. So the last time I saw my mom was in December 2019, and I never saw her again. She died in August a year ago this last week. So Dr. Kamat came in and said, “You’re cancer free. This worked.” I’ve just found out my mother’s dying and that I’m cancer free. That’s a lot.

Margo:

I was amazed and when we got into the car, when I got into the car because my husband waited for me in the little horseshoe drive, I said, “We have to take some time to celebrate this battle that we’ve just been through for me and for my life is at this point is a win in that I’m alive and I’m doing well, and it seemed to have worked. We get to celebrate that. I also need to call hospice. So how do we do that? I say, we take two hours to celebrate my cancer success, that I’m healthy and that all this difficult experience has paid off. Let’s just enjoy that. Let’s talk about it. Let’s enjoy it. Let’s get a milkshake at Chick-fil-A, let’s get french fries. And then at 12 noon, I will then switch over to handling the phone calls I need to handle to get my mom moved to COVID hospice.”

Margo:

So that’s what we did. We allowed ourselves a couple of hours to experience and relish and talk about what we felt and how it felt like we were in a permanent slow motion, massive emergency. I kept visualizing a huge pile-up with all these cars and emergency vehicles. It’s like we were like that for the six months and that we could breathe. We got through all of that and then now I was cancer-free. So worth it. Totally worth all of that. Then I dealt with my mother’s help and getting her moved. We did that also. She died a week later, and I’m still getting used to having a bag on my body and my brother and sister and I are … It’s a pandemic and I’m no longer immunocompromised because now it’s far enough since everything in my … I checked with Dr. Kamat and he goes, “Probably an airplane is one of the safest places you can be because they recirculate the air.” All that stuff was in place that kind of nobody knew about before the pandemic kicked in.

Margo:

There’s still a kind of an impression that it’s just recirculated air and it’s going to make everybody sick, and in fact it is not. Airplanes circulate the whole air and filter it out every two seconds. So my brother and my sister and I decided I would fly in, I would do all the things, the masking, the distancing, the hand-washing, all of that. Be really careful. The three of us needed to be together to process our mother’s death. We had a Zoom service for her with 10 people. Our close friends were with us in person, and that helped us. They were friends we’d all known from when we were little. It was surreal to do that. So we got through that and that was in August and then in September, our beloved family dog died. She was 14-and-a-half. And I thought, “Really?” That was really hard. And then in October, my father-in-law died, and we couldn’t have a service for him.

Margo:

It’s been a year. It’s really been a year. But what’s amazing is that you can live through things that you think you can’t live through. I am so grateful for BCAN. I’ve gotten a lot of comfort from seeing other peoples’ stories, talking to other survivors. BCAN put me in touch with another woman who’d been through a similar treatment regimen to mine, and that was comforting and helpful.

Margo:

I have found Facebook groups for cancer survivors, bladder cancer specific, women fighting bladder cancer specific. There’s even a group there. That’s all been helpful. So all of these virtual methods for us to be supportive to each other have really made the difference. What would I have done without that? Because I haven’t been able to connect with people in person until pretty recently. And so those were all things that contributed to helping me get through unbelievably challenging times. I’m here to report that I survived. My hair’s growing. I would never cut it to look like this, but I’m so glad to have some hair.

Joslyn Brown:

You look great. You pretty much answered all my questions, which is great. I will only ask … You went through a lot.

Margo:

I did.

Joslyn Brown:

You went through a lot in such a short period of time. How are you doing mentally now, and how has your support system been?

Margo:

Such a good question. I have a really great therapist. I have worked with her virtually, obviously. I have a really great tribe of friends. They’ve been amazing. They threw a COVID-friendly socially distanced dinner party, was better than nothing, before the surgery. They’ve all been just amazing as has been the case over all of the years that we’ve gone through different things together. So they’ve been amazing. My kids have been fantastic. My husband’s been fantastic. The staff at MD Anderson are amazing. I’m sure you’ve heard that. Even the person who is there to help direct you to the right parking garage is like, “Has everybody treated you well? How are you feeling?” I mean, they’re really kind and loving, and that’s really important to help you get through such a tough thing.

Margo:

Then there’s also just acknowledging that you get through and you get the happy, your healthy diagnosis, and then there’s this part of the process is processing that. It’s like this suspended or delayed grief. I found that even though I’m still getting the happy news, it’s taken months to just process what I just went through. It’s not like you get the happy news and you are done processing. So I guess if I wanted to share anything to people who are going through a tough diagnosis and treatment or who are wondering why once they’re cancer free, they don’t feel instantly happy and chipper, it’s a lot of stuff to process and it takes what it takes. It’s grief. It’s grief that we’re processing, and I would be not telling the truth if I said I’m all the way through it, but I’m way more through it than I was a few months ago. So thank you for asking. I am doing great.

Rick Bangs:

Thank you again to Margo for sharing her incredible and moving story with our listeners. 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.

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.