Ebonyi Story

[Theodora Andy]

Ebonyshares her cancer journey, including taking control of her hair loss, the experience of African Americans in the medical system, the importance of self-advocacy and support, and using her story to be a light for others.

I am married. I have 3 sons. I am an engineer by day. I just want to live my best life like everyone else. Those are the biggest things. I really want to live my best life and help others do the same.

I even started gaining weight, particularly in my midsection. I remember thinking I never gain weight in my midsection. With each of my boys, I gained 60 pounds when I was pregnant. But every time, I always gained weight in my hips and thighs.

Then I actually started feeling pain when I urinated. I was supposed to go to the urologist [for] my normal 6-month check that August. Due to him being on vacation, we rescheduled the appointment. When we rescheduled the appointment, then I ended up with COVID, and so that appointment was pushed off to October.

That was in person. For that appointment to talk about doing the surgery (prior to the biopsy), I was by myself. He did [describe it as a growth or tumor], and I instantly thought cancer.

That was one shift, and then the second shift was when he told me specifically after the surgery that the growth was confirmed to be cancerous and that he wanted to refer me to someone else that could better help me.

But it was November 29th, 2021, before I found out that it was cancerous. The crazy thing was, in the meantime, I got this random text from another hospital not even in the state that was something about checking into the cancer center.

That surprised me because I had to go to different doctors for them to check my heart, to check my liver, to check all these different organs. The hematologist knew what my body was about to have to undergo. They were trying to make sure that my organs were going to be able to withstand all of these really harsh treatments that I was about to start taking.

All of it was about the medications that I was going to have to take, the potential types of urinary diversion, you name it. That binder was the gospel for me for the next several months. [It was] a little daunting to get that binder. Then there was another little pamphlet that had pictures of people, I guess, that had bladder cancer.

I was really disappointed when I found out. I have a bit of a social media presence, too. I like to be out there and sharing with people how they can live as their best selves, how to motivate people, [and how to] encourage people.

I would go every 2 weeks, every Wednesday, and I had 4 different drugs. The acronym was MVAC, and it was 4 different drugs. I would go in for my blood work at like 8 in the morning, and then they would administer the chemo.

Generally, I would hope for a window seat because I was always surprised at how many people were undergoing care in the infusion center. All of it was in the same place, all still in Duke Raleigh. I would go upstairs to get my blood work [and] go upstairs to get a checkup.

They would tell me about how my blood work was looking, and then I would go back downstairs for the infusions. I would pretty much be there all day until like 3 or 4 in the afternoon. Some gracious souls would bring us food.

The urologist talked mostly about what the entire treatment would look like. The urologist talked beginning to end. The hematologist specifically talked about my chemo. I knew that there would be some type of surgery at the end of all this.

What the urologist explained to me was that once I was done with my infusion, then we would have to have a surgical procedure. That surgical procedure would absolutely mean the removal of my bladder because of the type of cancer that I had.

Those additional scans confirmed that it only spread to lymph nodes in the immediate area. At that time, the urologist thought we may actually have to proceed with a hysterectomy in addition to bladder removal, in addition to whatever urinary diversion they would have to do.

While there are no doctors or medical professionals in there, it was just comforting to me to know there are other women out there. It was a very small group, but there were other women out there. I can go look at their posts [and] see what treatment they chose.

There were 3 different types, 3 different potential urinary diversion surgeries that I could have. [I was] just trying to figure out what their quality of life was after their surgery. That was a little bit more about what he shared and how we connected the dots on what I wanted to do.

The neobladder consists of taking a portion of your intestines, your small intestines, and creating a new bladder. If they determined in the middle of surgery that that small portion of my intestines was not viable to be used as a bladder, then that meant that they would have to punt and go back to the bag-outside-of-the-body option.

I would not know until I woke up from surgery what I ended up with. My prayer was neobladder. That was ultimately what I decided to go with, but he also made it very, very clear that the neobladder surgery is incredibly invasive and much more involved and a longer recovery time.

There were other sections in the binder to talk about what could happen after the surgery. One of those things was you could be hypercontinent [and] lose all ability to control how you use the bathroom. Those were the fears that I had.

Some of my biggest fears started with the chemo because I also started experiencing hot flashes. There were instructions as far as after you have chemotherapy to not engage in sexual relationship because of the chemo and potentially endangering your spouse or whatever.

My husband kept encouraging me to try to stay active as much as possible. That activity sometimes was just walking. Literally, when I came home from the hospital, it was walking for 10 minutes, walking around the house with the physical therapist, just to halfway get my mobility back after atrophy from being in the hospital for so long and having issues with my heart also while I was in the hospital.

They had Googled, I guess, on the side and found out what the colors were: blue, gold, and a royal purple. They knew that I was going in for my first infusion. In our separate chat on the day of my infusion, they start posting pictures. They all have on some version of blue, gold, and purple.

It was very helpful to have women in the practice that could help me work through that. I said that I was marked for the urostomy bag. We even talked about different types of panties or undergarments, bathing suits, just different things that would make me feel comfortable with my quality of life if that was the route that we ended up with.

I had a playlist that was also encouraging to me. On those days that were rough for me, I would put that playlist on, and that would typically help me feel better. Those were some of the main things.

I remember going to Walmart and just having dresses to wear where I still felt pretty. I also had comfortable shoes as well. My husband [and I] ordered some extra sneakers because despite all of the extra things to try to prevent neuropathy, I still have neuropathy in my feet.

Marius is told by a church warden that his father regularly hid in church during Mass to catch a glimpse of him and the truth about his grandfather. Marius starts to look up information about his father, he learns he is highly decorated and begins to hero worship his dead father. He argues with his grandfather and moves out refusing help, his grandfather sends him money but Marius mails it back, his aunt living with the grandfather keeps the money. Marius begins his studies as a lawyer but descends into poverty; despite this he finishes his studies.

Amazing performance as always Charlotte! Doing what you do takes a lot of courage (well, for me it would at least. I scare easily when it comes to crowds). I also like the illustrations you found to support their story! ?

By the way I loved your Angel without Wings track it reminded me of Evanescence songs, out of interest do you cut the vocal arrangement alone or with the band all together in the same studio. Classical meets metal I like it ?

Thank you for the background. Best of luck. I think it is so cool because of this blogging stuff, I can be thousands of miles away and I can follow the career of an up and coming star such as yourself. Hope some day you perform in the States.

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"Basically she just kept to herself and played her trumpet and marched her spot," Sarah Brown explained smiling at Ebony. "While she was in high school, it was day to day, let's get this child to school, let's make sure she has food."

"The military always gives you that. It gives you, here's what we want you to do, here's how it's done, and here's a step-by-step and all you have to have is the grit to get after that and that's what the inner-city communities always have is people that have the grit to get after it," Leon said.

"With all the top news that we have today, with COVID, to have a story like this, there's nothing but good. I mean, this is nothing but good and she did it because she had the opportunity and she seized the opportunity," Lee said.

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