Life after leukemia

I’m a single mom. I’ve been on my own since she was born and it’s been really tough. But at the same time, I have her looking up at me. It’s like, “How do I explain to my five-year-old (at the time) that I have cancer? How do I reassure her and myself that things are going to be okay?”

I remember being afraid to say the word cancer because it’ll make it real. Then I realized I need to call it by its name because it needs to know my name. If I give it space, then I have some ownership over that, have some control, and it eliminates the scary a little bit.

It really took hearing my daughter say, “My mommy is a cancer survivor,” to understand that when we say it, it’s power. We’re getting our power back by saying, “I have cancer,” and so is saying, “I’m sick.”

When did you start to notice something?

When I got diagnosed with breast cancer, it was like a sucker punch, but at the same time, I kind of knew what to do this time.

For the last 20 years, we’ve been monitoring my blood work, focusing on my immune system, my anemia, and kind of touch and go on other things. There’s been lumps and bumps throughout the years, but everything has been biopsied and perfectly fine.

I was doing a regular monthly check and didn’t feel anything different or strange. I was about to get in the shower but I dropped something. When I went to pick it up, I saw my reflection in the mirror and noticed that one of my boobs was shaped [differently] when I leaned over. I thought, That’s strange.

I grabbed another mirror and did a couple of little movements then realized if I put my arm up, this whole breast was a totally different shape. I thought, That’s different, so I noted it.

The following day, [as] I’m getting dressed, I notice there’s a weird dimple in my boob that wasn’t there before. Maybe I gained weight. I weighed myself. A couple of days go by and now [I] notice my nipple is flat but I don’t feel anything. It just looks different on the outside.

I had a routine follow-up appointment with my doctor, the one who told me I was pregnant, and [as] we’re finishing things up, she tells me, “Is there anything else before we leave today?” I walk out and said, “Oh, I forgot to tell you! My boob looks kind of weird.” She goes, “What?” She took a look at it and immediately sent me over to get a mammogram.

Cancer genetic testing as a bone marrow transplant recipient

I had to contact all of my bone marrow transplant doctors and let them know what was going on because it meant that we had to do completely different genetic testing. I’ve had a bone marrow transplant so it was a whole different ball game for me.

When you have a bone marrow transplant, it wipes out your immune system [and] also your blood system. When you have an organ transplant, you have a donor organ being transplanted into your body. Bone marrow is an organ so even though I’m me on the outside, technically, I am my sister.

Because of genetic testing, we’re able to determine whether or not this is a line that carries in our family history and if we need to be concerned for other members [of] the family. When you have somebody else’s bone marrow, I’m technically her makeup even though I have my own genetic makeup.

It sent the scientists on a whirlwind trying to figure out what tests to do on somebody like me where if we do a blood test, it’ll show my sister and what her predisposition conditions could possibly be, not mine.

Luckily, we were able to determine that this breast cancer was not genetically inherited. It was in direct relation to, most likely, the chemical burns, doxorubicin, and total body radiation, which is weirdly comforting in the sense that at least I know it’s not genetic.

It’s a little frustrating to know that this is from what I had to have. If I would have known then what I know now, would I change anything? No, not at all. If I would have known then that I would end up at 35 years old with stage 2 breast cancer, I still would do everything the same.

How did you process this diagnosis compared to your first?

I think I processed this one better because I was awake. When I was going through leukemia, I was so sick, medicated, and comatose so I really don’t remember a lot.

I’m thankful because we kept daily logs of what was going on and I can look back. Thank goodness I don’t remember because I don’t want to.

Walking into treatment brought back flashbacks that I was not expecting to have and moments that I was not prepared to cope with. I think it made it hard for my family to embrace the situation because I did keep a lot of things internally.

You have these emotional breaks where you’re just a wreck and people don’t know how to cope with that. They don’t know how to comfort somebody. “Oh, you’re going to get better. You’re going to be fine.” Not really helping.

Tell me I can be angry. Tell me it’s okay to be upset. Then tell me I’m strong. I got through yesterday. Remind me of another time when it was really tough and I got through that. Because no matter how hard this might be, even if I’m on the floor in the fetal position, feeling desperate and clinging to life, I’m still clinging to life and that is to be celebrated, that is to be focused on.

Side effects from treatment

Hugging my daughter was different. It changed. Those were things that I wasn’t really expecting to deal with.

Hair loss? I knew that was coming so I wasn’t going to sit around and wait for my hair to fall out. I started cutting it and then we shaved my head.

My daughter and I got henna tattoos. I got one on my head and continued to get henna tattoos because, from my previous experience, wigs were not comfortable for me. I didn’t like the feeling and it was hard to wear my masks.

What helped you process your breast cancer diagnosis?

Mindfulness practice is huge. I didn’t realize how. I’m an Aquarius so I love water and anything related to water, but I didn’t realize how much that impacts your emotional wellness and stabilizes some of these things.

When I was going through leukemia, I would listen to [the] sounds of the ocean. I’m locked in this room. I can’t leave. I’m bedridden.

My mom would fill the basin with ice-cold water, rocks, and shells that I had from my collection, and she’d swoosh it back and forth for me. I just closed my eyes, put my hands in the basin, feel the waves, trance out, and go where it doesn’t matter.

It’s still something I practice. It’s still something that I hold on to. I have a fountain in my yard. I love the rain because it’s just so beautiful.

What happened after you got a unilateral mastectomy?

Due to the timing, with my history and everything, we had to do surgery right away to eliminate the problem as much as we could physically and then attack it with medicine. We rushed in and did a unilateral mastectomy and removed the entire left breast and my lymph nodes on the left arm.

As soon as I recovered from that, I started chemotherapy again. I was on Taxotere and Cytoxan. I had to do home injections as well so it was paired with chemotherapy. That was for about six months.

I had six rounds total of chemo then I had targeted radiation to the chest and parts of my arm. I had about 25 sessions of radiation and then started the process of healing.

In 2020, we did a scan to check everything. There [were] markers in the right breast, but the findings weren’t as aggressive as what we discovered in the left breast. When we did that scan, it revealed that I actually now would also need my thyroid removed. There [were] tumors there as well. It was just safer to remove the entire thyroid and not leave parts of it.

I had chemo and radiation again, a ton of surgery, only to find out that we were going to go take something else. And that was in the middle of the pandemic, too, so it was terrifying.

They removed the thyroid. I’ve had no problem since then and I’ve been on this long-term hormone, anti-cancer regimen for the last couple of years and I’m on it for a few more years. I think I get off in 2024.

How do you feel knowing that everything is good and stable?

To be honest, mixed feelings because it’s this basket of hope, like, “Yehey! I get to get on with my life again, move on, figure out what life is like with my stomach is my boobs now, and rebuild [and] re-plan my goals.”

But on the other side, it’s, “All right. Is this the calm before the storm? What’s next? If we’ve removed parts that I can function life without, what do you come for next?”

I don’t consider myself cancer-free. I consider myself a survivor but more than anything, I consider myself a thriver and that’s where I associate myself with my health and [the] long term.