My Journey with Bladder Cancer, 10 Years Later

From the good news desk: After 10 years, more than a dozen cystoscopies (I lost count after the 8th one), two major surgeries, a potent blast of chemo and endless anxiety whenever I peed, I am bladder cancer free. My urologist Dr. David Robbins, who has cared for me since this whole journey began in 2016, told me the good news after my recent visit, “We can stop following you,” he said. “We don’t need to torture you anymore.” This was after my last cystoscopy (not a fun procedure which I won’t miss anytime soon.) A few years ago, I posted a detailed account of what led me to see him, the mysterious red specks, his diagnosis, the surgeries and recoveries because bladder cancer is a topic most people, especially men, don’t like to talk about. But former NFL player and current coach Deion Sanders helped changed that last year when he revealed he had an aggressive form of bladder cancer which led to the removal of his bladder, which was replaced with one made from his intestines. I am linking to my previous blog post about my journey but the takeaway then and now is, Please look down at your urine as you pee. Attached is a photo with Dr. Robbins from my recent office visit because I don’t know when I will see him again although I adore him. Hopefully, not for a long time.

From the Heart, One Year Later

It’s been a year since I had my open surgery to remove an aortic aneurysm. It’s been a l-o-n-g emotional and physical journey, with some ups and downs. I'm happy to report that the scar is fading. It's almost gone. I am healing and overall, I am thankful .

The top photo is of me now. I gained some color (and a little weight.) The second photo was taken a few days after surgery last year. I looked pretty pale and felt awful from the chest pain and limited mobility. I tried to recreate the shot. It’s the same Old Navy shirt and wall background.

Here is my New York Times article that I wrote about the journey that led to the surgery and my immediate recovery.

And here are my previous blog entries in order (From the Heart, More From the Heart and From the Heart, Part 3.)

Breakthrough Covid Infections: It happened in my household

My partner had gone to two birthday parties among close friends on different weekends in late May. I didn't want to go because even though I am vaccinated for Covid-19, I did not want to be around big crowds and increase my chances of an infection. (I am also a bit of an introvert and don't like big crowds anyways but that's another story.)

But a few days after the last party, my partner began to present symptoms that included congestion and fatigue. He also lost his sense of smell and tase.  He found out that a little boy at the party had similar symptoms and tested positive for Covid-19. That prompted my partner to get a rapid test. The result was positive. I got the same test at CVS. My results were negative.

To be absolutely sure, we drove down to Cutler Ridge (about 25 minutes south of Miami) and got our noses swabbed during a drive-through test offered by the county. A day and a half later, my test came back negative. But my partner was still positive and another test he took a few days later also came back positive.

It was a scary experience. At that point, I didn't know anyone personally or in my immediate family who had Covid and here it was, in my home. We began wearing masks in the house and I slept in a separate bed temporarily.  I didn't get infected (thank God). I felt that my vaccine, the Johnson and Johnson shot I had received in March, protected me.

Inspired by the incident which left me with a lot of nagging questions, I wrote a story, an explainer in my paper, The New York Times, on what vaccinated people should do if they become infected with Covid-19.  The story was published in June and yet, we are seeing more and more of these breakthrough infections especially among the high profile set (athletes, senators, celebrities, etc.) as the new Delta variant envelopes the country.

How I Got The Covid Vaccine and Some Side Effects

 It was just past 11 a.m. on Saturday when the Facebook post popped up on my news feed.

It was from a fellow journalist Marc Caputo who said that he was at the Florida City Youth Center where workers were providing Covid-19 vaccine shots, no...questions...asked. Of course, I read in.

"What?" I thought to myself.

He  posted a photo with the city's police chief who had confirmed the same thing to him. Mr. Caputo said he was waiting in line, which was about 40-people deep.

So instead of watching my usual Grey's Anatomy reruns on Netflix with my doppio espresso and croissant from Starbucks, I made a run for it. I didn't even give myself time to change my clothes (baseball cap, tank top, shorts and sneakers sans socks.) I grabbed my wallet, keys, phone, mask and cup of water and hightailed my Beetle to Florida City. 

I got there in about 30 minutes (there was no traffic, really!) As soon as I got in line, I saw that it gradually began to centipede down the block.  I was about the 40-something person in line.  To my surprise, ahead of me, I recognized a familiar face and mop of straight black hair, former radio news host and regular MSNBC political commentator Fernand Amandi whom I had interviewed a few times when I was a reporter at the South Florida Sun Sentinel. He was in line with his lovely wife Chenell.

Just as I was about to reintroduce myself (we didn't immediately recognize each other with our masks) Marc Caputo emerged from the center with a band-aid on his arm and his CDC Covid test card. I and others in line thanked him for his post. His post was a life saver.

While we waited, the Amandis and I caught up and talked about our pandemic year, the pros and cons of working from home, not wanting to leave our homes in the Miami area and the idea of always to continue to wear a mask on planes after life gets back to normal.  (That's Fernand and myself in line on Saturday. I was holding my organizer filled with documents that I indeed was a Floridian.)

After standing in line for about an hour where I also bumped into Miami filmmaker Billy Corben a few rows back, we finally made it inside a room at the center where FEMA workers and nurses awaited. They asked me for my Florida proof of residency (my driver's license) and medical questions that involved allergies and whether I had been diagnosed Covid and treated for it.  I kept thinking they were going to ask me for medical documentation (which they didn't and I didn't have). I was prepared to pull down my tank top and show them my scar from my recent heart surgery. But that wasn't necessary.  I was asked which vaccine I wanted and I went with the one-time Johnson & Johnson shot.  Johnson & Johnson & Johnny. 

A few minutes later, a lovely nurse asked me where I wanted the shot (my left arm) and she asked if it was okay to do it on my shoulder tattoo which she thought was dolphin but was a shark. (Happens all the time.) Another nurse said she was happy to take a photo of me as I received the shot.  The needle on the syringe looked really long and I was a little nervous. But I didn't feel a thing. It was over before it even started. I was relieved and I felt I had some peace of mind. I had to wait for 15 minutes at the center (which I spent chatting with Billy bout his upcoming documentary called Kings of Miami and Netflix) before leaving to make sure there were no immediate adverse effects. The process was easy, smooth and the staffers were friendly. A Saturday morning well spent.

Like so many other people around the country, I was scared of catching the virus but even more so after I had open-heart surgery last August at Mount Sinai Medical Center in Miami Beach. My doctors had warned me I was at high risk for catching the virus given the surgery and living in South Florida (which has had high infectious rates) so I did my best to stay even more indoors than pre-surgery.  At least this Covid-19 vaccine will add an extra layer of protection and that soothed my fears, anxiety.

And like so many other Floridians, I was confused about when and where I could get the shot. I kept hearing different requirements from Miami-Dade to Broward counties which border each other. At first, it was intended for people over the age of 65 and then that expanded to include front-line workers and public school teachers (like my sister) over the age of 50. But some sites were offering people the vaccine if they were over the age of 18 and had documentation from a doctor that they were at high risk.  

During my recent physical, my primary doctor said that she would support me in getting the vaccine because of my medical history (ulcerative colitis, bladder cancer, high blood pressure and aortic aneurysm. I'm a Grey's Anatomy storyline waiting to happen.) I thought I would have to wait a while for my shot at the shot. (pun intended.) But when I heard about the Florida City FEMA site doling out doses to anyone over 18, I took a chance and dashed over.

I wasn't the only one. Word about the site spread like wildfire on social media, resulting in lines of hundreds people.  More than 400 people got the shot the same day I did. The next day, the site returned to the state's original requirements and people were turned away. The secret was out and the story became local and national news including my newspaper, The New York Times.

I am glad I got the shot but it did come with some apparent side effects. The day after the shot, my back and arms ached. By early Monday morning, I felt fatigue and the muscular ache had spread. I also had chills. I told my doctor and she said that was common among people who got the vaccine and if the symptoms hadn't gone away after two days, to let her know. Most of Tuesday, I still felt feverish and a little achey but I feel better now as I write this. I shared this with my cousins in Boston where they were getting the same Johnson & Johnson vaccine this week.

People in South Florida have asked me on social media how did I get my shot even though I am not 65 or over 50. These are some sites I recommend. They include Broward Health in Fort Lauderdale where you can make an appointment even if you are over 18, CVS, and Dr. B which matches people with clinics that have leftover vaccines.  My old paper The Miami Herald has been reporting on the various sites such as Miami Dade College North, Overtown, Florida City and Sweetwater (suburb west of Miami) where you can get a shot, with or without an appointment.  And Miami on the Cheap has been updating where people can find the vaccine in South Florida.

From the Heart Part 3

It's been almost three months since I had open heart surgery to remove an aortic aneurysm. I can finally say that the chest soreness and breastbone pain are gone. I can sneeze or cough freely without having to quickly grab a pillow and press it up to my chest so that my sutures don't pop out.

The zipper-like scar that lines the center of my chest is fading. I have gotten used to it. Six weeks after my surgery, my surgeon and his physician assistant lifted the physical restrictions they had me following. Now I can drive, lift light weights, swim, and more importantly, run, one of my favorite things to do.

I returned to running last month.  I began modestly, running half a mile. I did not want to overdo it, knowing that I have new piping in my heart. A side affect from the surgery is that I sometimes feel and hear my heart pumping. It's strange and unnerving. Who wants to hear their heartbeat in their ears? It's weird but I was told that would eventually go away. 

Although my doctors cleared me to exercise,  they strongly suggested that I do not over do it with the running and weights even though I was feeling good.

"Don't go lifting 200 pounds now, Johnny,'' my surgeon said. "Start at 10 pounds. Take it easy. Progress slowly. Listen to your body." 

Like a blinking yellow traffic light, caution ran through my head as I began to hit the pavement. Instead of running like a colt, I slowly jogged, which felt like I was running in place and not going anywhere but I was moving and that was the goal.

Other runners, mostly University of Miami students, whooshed by me but that didn't matter. I was going to run on my own terms. This was not a race. This was me literally getting back on my feet. When I reached my half mile goal, I smiled. A great sense of accomplishment washed over me. I did it!  

I couldn't believe that just a few weeks before, my chest had been cut open. I was in the hospital for five days attached to a tangle of IVs. I could barely move around without feeling searing pangs of pain in my torso. I finally recovered, cured of the aneurysm, untethered from the paranoia and fear of it suddenly bursting. Running was my way of celebrating that feat.

It felt so good to run again, the freedom that it brings. The breezes tickled my face, the sweat beaded on the back of my neck and my shadow accompanied me each way as if watching out for me. Knowing that I could get around on my own boosted my confidence. 

I enjoyed running to the tropical rhythms of Jimmy Buffet such as “Brown Eyed Girl” and The Beach Boys including "Sloop John B." These songs always put me in a good mood. I imagined I was back in the Keys and gazing at the various shades of blue in the water. I also ran to a medley of Pussy Cat Dolls hits because their infectious pop-dance songs make me want to run faster and their lyrics are fun to bounce along to.  "Tip top, drip drop, Bottles drop, lips lock..."

My confidence continued to blossom. I began running a mile which is what I am doing lately. Again, I do not want to over do it.  My doctors told me that my heart was stopped for about 2.5 hours during the 5 hour surgery so they could cut out the aneurysm. The heart was kept cool with a special fluid while I was hooked up to a bypass machine which did the work of my heart and lungs. I do not want my heart to suddenly stop because I overexerted myself with the running and weights.

My goal is to eventually return to 2 and 3 mile runs, my previous routine. But I am in no rush. I know it will happen. I am already half way there.

 

From the Heart

A soft cloth graft sits inside my aortic artery, helping blood flow throughout my body. The graft, almost like a 32mm sleeve or about 1.2 inches, replaced an unruptured aneurysm (bulging of the artery) that was silently and dangerously growing inside my aortic root. The aneurysm was recently removed and replaced at Mt. Sinai Medical Center in Miami Beach. The name of the procedure is a mouthful: valve sparing aortic root repair.

It's weird to think that my heart has a new part or an artificial section (featured in light blue in the above illustration along with my messy notes.) I discovered the aneurysm by accident. Before a colonoscopy in Boston, my heart wouldn't stop racing. It was as if I was running even though I was lying down waiting for the happy drugs. The gastroenterologist halted the procedure and strongly suggested I see a cardiologist which I did a few months later in Miami.

That led to an appointment with cardiologist Dr. Todd Heimowitz followed by a series of follow ups and tests (EKG, echocardiogram, CT scans) that eventually revealed the aneurysm or "slightly enlarged aortic root." It was being monitored and managed with blood pressure medicine (and I was okay with that.) Before I moved to New York last fall, Dr. Heimowitz had strongly suggested that at some point whenever I visited Miami again, that I seek a second opinion from Mt. Sina's chief cardiologist Dr. Steve Xydas who specializes in aortic repairs and aneurysms. Aortic aneurysms affect about 15,000 Americans each year and they are most common in men and people over the age of 60, according to Columbia Surgery.

After meeting him in January of this year, he strongly suggested I have the surgery done and not to put it off. The news struck a huge fear in me. Open heart surgery? I thought I was too young for that. I wasn't 60 as the statistics show and I am not a smoker. More importantly, I didn't want my chest carved open like a Thanksgiving dinner.

I had thought I could just live with this for the rest of my life (knowing in the back of my mind that I had a grenade in my heart) but that would not be the case. While I was in Miami, Dr. Xydas quickly ordered another CT scan which showed that the aneurysm had grown to 5 cm (or a total of two-inches.) I was right at the line, near the danger zone of bursting. He said it's better to do this as a choice than during an emergency. He and his staff were also confident that I would be a strong candidate for the surgery and come through well given my "young" age and my overall good health.

My family history played a role into the decision for surgery. I had two uncles (RIP Josito and Bartolo) who died from aneurysms in their heart and abdomen in their 60s and 70s so that added to the urgency of having surgery sooner than later. I held off as long as I could with the chaos of the Covid-19 pandemic. But when summer rolled around, I knew it was time. An inner voice kept getting louder and nagging at me: You have to get this done! Don't wait any longer!

I had the surgery in mid-August (I had no idea that the nurses would shave EVERY THING even though I keep explaining that my heart was in my chest and not below my waist but that's another story.) The photo below is the second day after my surgery when I got my own private room after being in the ICU. If I look a little out of it, it was from the painkillers. After five days at the hospital (no visitors were allowed) and now several days recovering at home, so far so good, although my chest is really sore (they had to cut through my breastbone to reach the heart.)

My chest feels like someone took a hammer and struck me in the middle of my torso. It hurts when I laugh and when I cough (I have to hold a pillow to my chest for the latter.) I am somewhat limited in my movements; I am doing my best and feeling a little like old myself every day.

I am walking a few blocks a day. No running (which I miss,) no driving and no lifting weights...for now. And I definitely can't play Twister, not that I would. I went back to work a few days ago, eager to write news articles once again. In the meantime, I am thankful this is behind me. I'm also kinda getting used to my badass battle heart scar which you can see below. Maybe I can turn it into an awesome tattoo at some point.