Non-Hodgkin Lymphoma Stories
Primary Mediastinal, Stage 1
“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 o f the time you have and enjoy it to the fullest. I can truly look back on my spring and summer and say I had a great time, in spite of what I went through.”
Name: Keyla Scrogham
Non-Hodgkin's Lymphoma, Primary Mediastinal Large B-Cell
Slight trouble breathing
Chemotherapy: R-EPOCH (Dose-Adjusted)
6 cycles, each cycle = 3 weeks
Week One: continuous infusion through PICC line (arm) or port (chest) for 24 hours lasting 5-6 days
Week Two: side effects tend to kick in, ranging from nausea to mouth sores
Week Three: typically the healing week when blood cell counts recover
NOTE: If your white blood cell count (WBC) doesn't rebound back into the standard range, your next chemo cycle may be delayed.
TABLE OF CONTENTS
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I. DIAGNOSIS AND TREATMENT
How did you get diagnosed?
I found out Valentine’s Day morning, just three days after giving birth to my first baby girl. My husband and I were woken up at about 7:00am 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 did not think is was benign. That was not the case.
We were completely caught off guard. In fact, I remember my husband looking at me and back at the doctor over and over again with the most shocked looked on his face, which had gone completely white, and repeatedly saying, “You said it’s NOT cancer, right?”
Wrong. I started showing “signs” about two weeks prior to giving birth with just a bad cough and a little trouble breathing that I thought was caused by being pregnant.
Once I gave birth the doctors did an x-ray of my chest and originally thought I had a pneumonia, so they ordered a blood culture which turned up a false positive for staph in my blood (which they treated me for through a PICC line in my arm for two weeks). From there they decided to do a CT scan which showed the tumor. I was in shock. I think the only thing I said was, “Okay.”
I went into surgery the next morning because I had a baseball-sized lump under my right armpit and my surgeon thought it might have something to do with the tumor. I had brought this lump up to my OBGYN 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 three 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 four 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.
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. After the first round of chemo I was really able to assess the situation better and sit down with my husband to discuss if we really wanted to continue at the hospital where I did my first treatment, with the oncologist we had, or if we wanted to get a second opinion.
What was week one of chemo like?
At the time I didn’t know what to expect from chemo. We were given a diagnosis and checked into the hospital later that day. I didn’t have time to look anything up or ask anyone. I was in a hospital that, quite honestly, probably shouldn’t be treating chemo patients, in my opinion.
My port was accessed just days after being placed which was a little rough to begin with, but looking back, it was the very least of my problems for that first round. The hospital I was staying at over those five days had all us chemo patients shoved into one hallway on a floor not designated for cancer patients, with nurses and nurse aides taking care of us who knew basically nothing about chemo.
There had to be two chemo-certified nurses on the floor at all times, but it would take hours before I saw one if I had a question or needed anything that had to do with my chemo, the entire reason for my visit. I had a bad reaction to the Rituxan the first night, including a 103-degree fever and cold chills that uncontrollably shook my entire body for 20 to 30 minutes. I had hit my nurse call button and after 12 to 15 minutes no one showed up.
Thankfully, my OBGYN had come over to check on me on her way to her daughter’s dance recital and ran out and grabbed a couple of the nurses who had to stop the Rituxan for 45 minutes so my body could recuperate. That was really the only bad reaction my body had during the first round, and swelling, but that would have been better if they would have let me leave my room and walk. The one time I tried walking down the hall, I was yelled at by one of the nurses and told to go back to my room.
At the hospital I’m at now I’m encouraged to get as much exercise as possible. I usually ride the exercise bike they have here for about 40 to 45 minutes each day I’m there and take five to ten laps around the floor. I was also put in a room with a shared bathroom with another chemo patient during my first hospital stay, which I ended up walking into 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 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.
How about Week 2 and 3?
Weeks Two and Three I just focused on taking things day by day. I didn’t know what to expect so everything was a little scary, but 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.
I get very tired immediately following each treatment as I come down from the steroids, and typically just stay in bed for the majority of the day that first day I’m home. I have swollen knees, legs, and feet for the first few days once I leave the hospital which makes it difficult to walk. My face gets very swollen each time from the steroids and fluids, but that usually only takes about two weeks to go down. The tingling in my fingers was a weird feeling those first couple of weeks after my first round, but I’m used to it now.
I think the worst thing during those first few weeks was how sensitive my head got. It actually started burning, and at one point I had taken a shower, gotten out, and my hair just stayed in one lump from shampooing it. It was so fried and dead that I wasn’t even able to brush it. I called my friends, turned on some fun music, and cut it off, then had one of them shave it. I didn’t mind losing my hair. I knew losing it was coming eventually, why get upset about it. It was all temporary, and it felt good at that point, physically and mentally. I shaved it short but not all the way down, I didn’t shave it completely bald until after the second treatment. It was too sensitive before then.
How did you deal with chemo?
That feels weird saying because I definitely don’t look forward to it or enjoy how I feel during this time, but 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.
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 was the worst part of treatment?
Losing my eyebrows and eyelashes along with the face swelling from the steroids completely changed how I look. I have always had very thick lashes and brows, so to me, this was much worse than losing my long hair. But even this didn’t really affect me too much until after Round 4. I just took less pictures of myself and didn’t look in the mirror as much. Maybe it was a blessing!
With that being said, I do feel like I was deprived of that “new mom” experience because of having cancer. Spending four to five days every 21 days in the hospital, followed by eight hours of Rituxan as an outpatient on the 8th day, then feeling sick for a week or so after, and getting labs done twice a week, then starting to feel better only to go right back in the hospital, I’d say I have been at a disadvantage when it comes to being able to spend quality time with my little girl. That’s probably the worst part for me.
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.
How were the scans?
I've had two 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/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.
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.
II. 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.
neuropathy in fingers
low white blood cell counts (neutropenia)
swelling in legs, feet, face, stomach (from steroids and fluids)
sensitivity to sun
hair loss (everywhere)
loss of appetite (after third cycle)
Describe the side effect cycle
The only side effects I had while in the hospital for my four-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 start 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.
Describe the hair loss
The hair loss on my face was more difficult because I have always had very thick eyelashes and eyebrows so I didn’t enjoy that by any means, but they start to grow back between each cycle so I know they’ll come back quickly. It’s definitely nice not having to shave my legs though!
What helped with the hair loss?
I purchased a wig and also had someone give me one, but I mostly just rock a light beanie or go bald and proud. I’ve learned that I care much more about how I look than anyone else and I can’t even see myself on a regular basis so why dwell on something I can’t control?
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 four to five 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?
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.
How important is it to have caregivers?
So for me, it has been VERY important. Especially having caregivers for my kids when I’m either not there or not at 100% physically. There are times when I think I’m superwoman and I can fight through any side effect and just tell myself it’ll be okay, but I have learned that I need someone there with me for about a week after leaving the hospital each time.
I put myself in a scary situation once where I had the baby by myself at home three days after my third round, husband at work, and I got very lightheaded and had to do everything I could not to pass out for about an hour straight. I had to call friends of ours who lived nearby to come over immediately and make sure the baby was taken care of and I pumped myself full of fluids, laid down, and had my father-in-law come stay with me for the rest of the day.
Can you work during treatment?
I was very fortunate in the sense that I had my baby and found out about my cancer three days later, because I was able to be on maternity leave from work during the same time as the majority of my treatments. I have heard of people working a little during the same chemo I am receiving, but I personally didn’t want to risk getting sick and delaying my treatment process, so I chose to stay home the whole time. I plan on taking a little over a month off once my sixth and final cycle is over before I return to work. It gives me more time with my baby as well without interruption from hospital stays and labs, so I’m looking forward to that.
How old were your kids when you were diagnosed?
I have the youngest, our baby girl who was three 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.
The conversation with our youngest son was very similar, but the relationship with his mom is not the greatest and we have full custody of him, so my husband and I explained everything to him one on one.
We laughed and hugged, and then I went in my room and cried a little on my own, and that was that. He often asks how I got “my cancer,” and I explain that it wasn’t anything specific, just the something my body produced on its own. He’s still a little confused but we are very open and honest without saying anything that would scare him.
How has it been raising a young child as a patient?
It’s been challenging, but I’m really not the one doing the majority of the “raising” right now and that’s been the most difficult part of it because I’m a very hands on parent, and person, with everything I do. 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 its all temporary. I am missing out now so that I can have so much more time with them later.
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 weirdo strangers, but classmate’s parents that you hadn’t met until now, etc) 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 God sent. 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.