Keyla’s Stage 1 PMBCL Non-Hodgkin’s Lymphoma Story

Keyla was diagnosed with stage 1 primary mediastinal B-cell lymphoma, a subtype of non-Hodgkin’s lymphoma.

In her story, she details undergoing chemo, how she managed hair loss, parenting with cancer, and how to ask for help during treatment. Thanks for sharing your story, Keyla!

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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Diagnosis and Treatment

How did you get diagnosed?

I found out Valentine’s Day morning, just 3 days after giving birth to my first baby girl. My husband and I were woken up at about 7:00 a.m. in the hospital to a thoracic surgeon we had never met before, telling us they found a 20-centimeter mass in my chest that was most likely malignant. 

This doctor thought we knew about the mass and that he was just informing us that he did not think is was benign. That was not the case. 

I went into surgery the next morning because I had a baseball-sized lump under my right armpit. My surgeon thought it might have something to do with the tumor. 

I had brought this lump up to my OB/GYN during my visits, and she assumed it had to do with my milk supply coming in. We found out immediately after surgery that she was correct. That was our first win against cancer. 

What tests and scans did you undergo?

In the following 3 weeks I had a needle biopsy, bone marrow biopsy, a port placed, a surgical biopsy because the cells from needle biopsy had dried up by the time they reached the Mayo Clinic, and a PET scan. 

I’ll be honest, the bone marrow biopsy hurt, but that was probably because she couldn’t get enough fluid, so she had to do it 4 times. I don’t think that normally happens, but the surgical biopsy was probably the worst. It hurt for weeks after, and I’m now left with a decent-sized dent on the right side of my chest where the scar is. 

‘Battle wounds,’ we call them. I’ve learned to accept these. They’re part of a story I’m grateful I get to tell.

How did you choose hospitals?

I didn’t at first. I didn’t even choose my oncologist at first. She was chosen for me by my surgeon. As soon as my port was placed, I was given a day and time for an appointment with an oncologist who worked out of the same medical network as my surgeon. I’m assuming his team set that up for me. 

I did whatever they told me to do. I really just went through the motions and didn’t question anything. Whatever I needed to do to beat this and put it behind me, I was willing to do. 

After hearing that the cancer I had was curable, after thinking for a little over a week that it wasn’t, I honestly didn’t care what I went through. I knew it was going to be a temporary bump in a long road ahead, and I didn’t care how bad it was as long as I was able to get to the other side. 

I was also put in a room with a shared bathroom with another chemo patient during my first hospital stay. I ended up walking into [the bathroom] during one of my days there and finding a dirty bed pan left on the seat of the toilet, probably not the best thing for someone going through chemo — or anyone for that matter. 

I also had chemo poured on me twice by one of the nurses changing my bags. Yeah, I definitely recommend finding a hospital you trust that has a good reputation for exactly what you’re going through.

I was all smiles during my stay. I always focused on the positives. It really wasn’t that bad as far as side effects go, or maybe I was just so thankful to have my life and know there would be an ending to everything I had to go through that it didn’t seem as bad. Nothing this entire time has been even close to unbearable. It’s not nearly as awful as I anticipated.

Describe Weeks 2 and 3

Weeks 2 and 3 I just focused on taking things day by day. I didn’t know what to expect, so everything was a little scary. Any time I started having symptoms, my husband and I looked it up on our stack of papers we were given from the hospital with every medication and side effect.

My mind was put to ease knowing it was something normal. 

That feels weird saying, because I definitely don’t look forward to it or enjoy how I feel during this time. I hear some of these stories of people who have to go through so much worse, and I feel like what I go through is almost next to nothing comparatively. 

For a couple of days after leaving the hospital, I’m weak and tired and have nausea and stomach pains, but it only lasts a few days for the first couple of rounds and lengthens a little each time. 

I really don’t think that it’s awful to go through. The mouth sores are annoying and do hurt a little, but nothing intolerable, and they didn’t start till after my third round. 

The bone soreness from the Neulasta shot is a little difficult to deal with. I have been stopped in my tracks a lot from the pulses it sends throughout my body, but it’s nothing too horribly bad. 

Honestly, chemo and the 2-a-week lab appointments in between each cycle to check my levels is more of an annoyance for me, because it takes me away from my family and my newborn baby, but it has become my new norm. I just keep telling myself that it’s all temporary and that it’ll be over soon. I have so much to be thankful for, and my focus on that has been a key in staying positive throughout this process.

How was the port?

I was so nervous about this port. I had no idea what it even was, but it has truly made this experience so much easier for me. My veins are tiny and do not react well to needles, so getting a port has simplified dealing with needles. 

It had a little issue getting blood return from it after my first round, but the nurses at the new hospital I went to used a Cathflo (helps restore catheter function) to flush it out, and it has worked perfectly since.

What got you through that worst part?

I found that not looking in the mirror as much as possible — especially when I am in the hospital, and my face swells and gets very red from the chemo — and just focusing outward on what’s going on around me versus dwelling on how I see myself currently has really helped me when it comes to being concerned about my looks. 

Lots of FaceTiming helped me cope with not seeing my kids while I do my hospital stays.

Describe the scans you’ve undergone

I’ve had 2 PET scans. I had one before my first round of chemo and one after my second round. After my second round, my PET scan showed that on the SUV scale (a scale that determines how active my tumor is by how much sugar it absorbs), my tumor went from over 10 (very active) to a 2.35, which was great. It had also shrunk from 20 cm to 12.5 cm. 

The scans were easy and painless. 

The first one was a little uncomfortable because I wasn’t able to lie on my back for very long without coughing because of where the tumor was and how large it was, but by the second scan, my cough was completely gone, and I was able to lie on my back without any issues at all.

Describe the waiting periods after tests and scans

The unknown was a bit scary. I think the worst one was the week in between hearing that I had an incurable type of cancer with a 10 to 12 year life expectancy to having the surgical biopsy, which determined that I did in fact have a curable cancer. 

During the other periods of time between scans/tests and the results from them, I really just focused on my family and friends and spending as much time with them as possible. 

I wanted to feel normal before the crazy started, so that’s what I chose to do. I didn’t dwell on what could be, but instead enjoyed what I had in front of me.

»MORE: Dealing with scanxiety and waiting for results

What was the biggest surprise?

Definitely finding out that my cancer was incurable and then getting that surgical biopsy done and determining it was in fact curable. I would say that was the biggest, best surprise I’ve ever experienced in my life.

Symptoms and Support

What were the side effects?

Quick note: the list looks long, but it really hasn’t been horrible for me so far. These are just some of the things I noticed.

• menopause
• hot flashes
• confusion
• neuropathy in fingers
• low white blood cell counts (neutropenia)
• low potassium
• swelling in legs, feet, face, stomach (from steroids and fluids)
• sensitivity to sun
• lightheadedness
• hair loss (everywhere)
• muscle weakness
• mouth sores
• sore throat
• joint pain
• fatigue
• nausea
• stomach pains
• loss of appetite (after third cycle)

Describe the side effect cycle

The only side effects I had while in the hospital for my 4-day rounds was swelling of the face, knees, legs, feet, hands and stomach. I actually felt pretty great during my stays otherwise. The day I leave the hospital, I still have a lot of swelling, but the steroids keep me energized. They start wearing off through the day, and I get a little tired.

By the second day, I have all-over body soreness, and it’s a little painful for people to touch me. I have a slight cough, and my throat usually has a tickle for a few days. The tingling in my fingers starts my second day home as well, along with a little nausea and stomach problems.

My legs and rest of my muscles are also pretty weak during this time, and it’s more difficult to get up and down on my own. The side effects are pretty much the same every time. They just get a little worse each cycle. 

Were you prepared for the side effects of treatment?

I don’t think you can really prepare yourself for the side effects. I honestly just dealt with them as they happened, and after a couple of cycles I knew what to expect. 

It seems like a long list, but it really isn’t horrible. It hasn’t been for me, at least.

What helped you the most in dealing with side effects?

Take Zofran before you eat by at least 30 minutes. Don’t wait for symptoms to start; be proactive. Also, I started getting the Magic Mouthwash while I got my Rituxan during outpatient on Friday’s following my cycle and using it before I got sores, which helped prevent them from getting bad. 

What helped when you lost all your energy?

I can’t say I really lost all my energy. Sure, I’m tired after each round for 4 to 5 days or so, but I get some sleep while my mom and husband take care of the kids for a day-and-a-half after treatment. Then I suck it up and realize I have a household to take care of, and life goes on whether I have cancer or not.  

I just focus on my kids and my family and friends and don’t mope around with a “woe is me” attitude.  Sorry, I’m blunt, but that’s what has worked for me!

How did you manage your thoughts and emotions?

Talking to my family and friends about how bad I was feeling, physically and mentally, seemed like a burden. I never wanted to be a victim or have people think of me this way, so I write.

I started writing letters to my kids through this process, and that’s helped get my feelings and thoughts out. I plan on continuing these letters and giving them to all 3 kids by the time they’re 18.

I will say that I have enjoyed my summer so far and encourage anyone who has to go through this to try and enjoy as much time as you can with people you love, doing things you love. I got out and lived in spite of what I was enduring physically and mentally. That was the best decision I could have made. 

What do you wish you had known before you began chemo?

At the time, before I started my first round, the unknown was a little scary, but I’m glad I didn’t really know what to expect. Ignorance was bliss, looking back.

Be your own advocate

I pretty much just went with whatever my doctor told me. When I didn’t feel like something was clicking, I took the necessary steps to change it, like I did with my doctor and hospital. 

» More: How to Be Your Own Advocate

Parenting with Cancer

How old were your kids when you were diagnosed?

I have the youngest, our baby girl who was 3 days old when I was diagnosed; our oldest boy, who is 8; and our youngest boy, who is 7.

Did you tell your children about the diagnosis?

Yes, we did. We involved the mother of our oldest when we told him (both are my stepsons), which made it much easier. He had experienced his grandma going through breast cancer just a few years prior, so he had an idea of what to expect. 

He was emotional, but I smiled, made light of the situation and told him, ‘I’m superwoman and can get through anything.’ 

I can’t go to nearly as many school functions, baseball games, basketball games, play dates with other kids, plays they’re in, fun activities like going to the movies or to laser tag, birthday parties of other kids, doctor visits, etc. 

My husband is the ultimate dad, and I’m so thankful for him and for my loving and caring mother, who has basically moved in with us during my treatments and for about a week following. 

I have been blessed with awesome, awesome people in my life, with whom I trust getting my day-to-day tasks done while I cannot.  

What are extra considerations when you have to parent while undergoing treatment?

Allowing help from others is okay to do. All the help I can get. Like I said, my husband and my mother — and also my mother-in-law and father-in-law — have been so key in making our lives as stress free as it can be during this time. I am so appreciative for each and every one of them. 

Also, it’s been difficult to accept, but I’m going to have to miss out on things involving the kids. It’s been tough having to miss things and not being as involved as I’d like to be and once was, but it’s all temporary. I am missing out now so that I can have so much more time with them later.

»MORE: Parents describe how they handled cancer with their kids

Any advice for how to ask for that help?

Swallow your pride. Tell people that you’re not too proud to admit you need help running your household. 

People, family, friends, strangers even — not weird strangers, but classmate’s parents whom you hadn’t met until now — want to help you. You just have to be open to it. 

Thankfully my mom is a retired teacher, so we have lots of help there. She has really been a godsend. But I’ve also been okay with asking my friends to watch the baby while I go get my labs done twice a week.

Or if Zack and I need a date night, or whatever the case may be.  Remember, just because you have cancer, it does not mean that you should let it define who you are or what you do. 

Make the most of the time you have and enjoy it to the fullest.  I can truly look back on my spring/summer and say I had a great time, in spite of what I went through.

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Primary Mediastinal B-Cell Lymphoma Stories