What it was like to be diagnosed with cancer at 23 and now be living a healthy life
HOUSTON – Twenty-three was a big year for me.
I planned a wedding, I got a (second) dog, I got married ... and I was diagnosed with cancer.
About a year prior to being diagnosed, I was in the best shape of my life.
I was an avid runner. I was confident. I loved my life. I had started to experience light pain in my lower back, but I chalked it up to my High Intensity Interval Training (HIIT) workouts.
A year after those first pains and now ready to get married, all of a sudden the pain had gotten almost too excruciating to bear.
I went to the doctor multiple times in the months leading up to my wedding and each time I was told that I was a healthy young woman and that I should go home and do some stretches.
Nothing helped. The pain would hit in the middle of the night. It was like someone was scrapping out the bone marrow in my hip with a knife. It was so unbearable that I would cry and hoped to die because that seemed easier than dealing with the pain.
A couple months before my wedding, I was prescribed heavy pain killers and muscle relaxers, and finally I was starting to get some relief.
The pain was there, but at least I was medicated enough to not really notice.
Just a couple weeks before the wedding, I went to the doctor one last time. We did blood work and everything came back normal. Well, everything but my inflammation levels.
My doctor said they were a little high, but because I was about to get married and go on my honeymoon, we just scheduled a follow up for after we got back. After all, I did have more important things to worry about.
We got married in October 2016.
By early December 2016 I had a diagnosis -- stage 2 Hodgkin’s Lymphoma.
What I learned about lymphoma
Here’s something no one tells you about getting diagnosed with cancer: hearing the news sucks, but there is nothing (I mean nothing) worse than having to figure out how to tell friends, family, coworkers or anyone that you have been diagnosed with a disease that is almost immediately associated with death.
Before recent years, cancer - no matter what kind - was basically considered a death sentence.
Medicine has come a long way and the death rate from cancer has dropped significantly, in fact, just in the last 25 years the cancer death rate has seen a 27 percent drop.
Now there are many cancers that have a much better prognosis, some even as high as in the 90th percentile. Among those - Hodgkin’s Lymphoma.
According to the American Cancer Society, there are two types of lymphoma – Hodgkin’s and Non-Hodgkin’s.
My oncologist – Dr. Anish Meerasahib with Texas Oncology – once said that if I had to pick a kind of cancer to get, Hodgkin lymphoma is the one to choose.
Grim, I know, but when dealing with a disease that most people associate death with, it’s important to have some humor.
Looking back, I had the symptoms
Just days before my scheduled November follow up with my doctor, I was driving to Ikea when I felt tension in my neck. I ran my hand along the side and felt a lump. I tried to put it out of my head, after all before I got the diagnosis, I felt completely fine other than the hip pain, so cancer was the furthest thing from my mind.
Looking back, I did exhibit many of the symptoms, which include lumps (a.k.a enlarged lymph nodes) in the neck, under the arm or in the pelvic area, drenching night sweats, itching skin and fatigue.
I had all those, but I chalked them up to things like tiredness from moving into our new place, eczema (which runs in my family) and Houston heat. I was able to find an excuse – for lack of a better term – for my symptoms except for the lump and the pain in my back and hip.
After my follow up appointment, I had my first X-ray, which provided a great view of the swollen lymph nodes in my chest and neck, and landed me with a preliminary diagnosis.
I had my first CT-Scan days after the X-ray and the cancer lit up like a light. Not only was it in my lymph node, but it was also on my right iliac crest (a.k.a my hip), which was causing the excruciating pain.
After that it was appointment after appointment – something else they don’t tell you. Medical bills pile up. Fast.
The bills really pile up
I started chemo Dec 27, 2016, and by then I had already spent well over $5,000 just getting scans, surgeries, X-rays, blood work and more.
We tried to get secondary insurance to cover some of the costs, but companies like Aflac – which built an entire business around helping people with medical bills – told us they do not take people with preexisting conditions.
The company told my husband and me that because I already had a diagnosis, I was not eligible to receive help.
Pro-tip, if cancer runs in your family (like it does in mine) consider looking into secondary insurances before a diagnosis happens. You may never be diagnosed, but at least the safety net is there.
Talking to the finance department at whatever hospital or facility you are being treated at is also a huge help. Sometimes they can work out plans or reduce what you owe depending on the circumstance, and while it’s not a guarantee, it doesn’t hurt to have a conversation.
24 hours away from death
I did my first round of treatment and the woman who was my initial oncologist told me I would be fatigued and lethargic. And I was.
About a week after my first treatment I was so weak and tired that I was having trouble even standing in the shower.
We thought it was the effect of the chemo, but by Jan. 7, 2017 I was hospitalized with a severe case of sepsis. I was in and out of consciousness for the first few days at the hospital, but my parents and husband tell me that doctors said I was 24 hours (or so) always from death.
Another thing they don’t tell you about cancer - sometimes it’s not the cancer that kills you.
When you are going through any kind of cancer treatment, your immune system is weakened, so it's imperative that you avoid infection or sickness because it can be fatal.
According to the CDC, sepsis is “the body’s extreme response to an infection” and is considered a life-threatening medical emergency. It happens when “an infection you already have … triggers a chain reaction throughout your body.”
My port - which is kind of like an access point implanted in your chest to more easily administer chemo - had apparently become severely infected, and because it is a directly “plugged in” to a major artery, the infection spread like wildfire.
The CDC says that “without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death.”
A scary report from my doctors
I lasted an entire two weeks with the infection pumping through my body. I was told to go to the emergency room if I ever developed a fever, and sure enough, at exactly the two-week mark, my temperature skyrocketed to 104.
When we finally went to the ER, I was weak and fading fast. I was awake enough to know that I was in a hospital and things were bad, but my memory is mostly that of needles, hazy bright lights and voices that sounded more far off than they were.
Sepsis can kill a person in a matter of days. In fact, around 1 million people get sepsis each year and just over a quarter of those diagnosed die each year, so I consider the fact that I survived a true miracle.
I was put on some pretty serious antibiotics, and after the first 24 hours I began showing improvement so I was moved to the medium care unit, which is a step down from the intensive care unit.
The next two days were mostly focused on keeping my fever down. I was not allowed any visitors and anyone who can into my room had to wear a full outfit of protective gear so they wouldn’t spread germs.
On the third day, I had shown enough improvement that I was taken into emergency surgery to have my port removed. When I came out of it, doctors told me my port was surrounded by and filled with pus and that we got to the infection in time – otherwise I would be dead.
Find a doctor who fits your needs
While I was hospitalized, my oncologist (who had not even bothered to check on me the four days I was at the hospital) called me to tell me I was scheduled for chemo the next week.
Something else no one tells you about getting cancer - it’s OK to fire your oncologist.
My first oncologist was recommended to me by my primary care provider, who had heard she was a good oncologist.
While it is good to look into a recommendation by other doctors, do not take their word at face value because sometimes the name they give you is just the first one that pops into their head.
I was in a rush to get my treatment started (so I could get it over with), so I didn’t bother to do more research.
Cancer patients have questions -- lots of them, and you should feel comfortable asking them, but unfortunately, that wasn’t my experience.
I never felt like my first oncologist was on my side.
When I called to let her know I was hospitalized I was not able to get ahold of her, and when I finally did hear back days later it was to tell me I was still scheduled for chemo even though I was still in the hospital.
A variety of doctors had spent the week telling me (and my medical team) that my immune system could not handle another round of chemo until I was 100% better, so my parents and I decided to look into switching doctors.
We ended up finding my current doctor, Dr. Anish Meerasahib, with Texas Oncology, thanks to amazing hospital staff who had become familiar with my case.
When looking for an oncologist (or any doctor), word of mouth is a good start. But before you settle on one, take some time to speak with actual patients, and do some research, because this is the person who will walk alongside you as you go through your battle with cancer.
There are also plenty of online resources where you can Google oncologists and see what others are saying. Bear in mind that not everyone’s experience is equal and while one doctor’s mannerisms and personality might not be right for you, they could be the perfect fit for someone else.
Just know that it is OK to change doctors if you are not completely satisfied. Don’t stick with someone just because they know your case. Part of the cancer battle is keeping a healthy, positive mind, so you don’t want to be miserable every time you go to the oncologist.
Following my emergency surgery and my hospitalization, recovery started to go much more smoothly.
My temperature and heart rate were back to normal, I got my strength back and was able to move around on my own again and I was even able to receive visitors.
I was only in the hospital four more days after my emergency surgery. I was released just two days before my birthday and I was really excited to celebrate, but my 24th birthday came and went without a fuss.
Thanks to the chemo and the sepsis, my immune system was virtually nonexistent, so I was quarantined for two months following my hospitalization and put on IV antibiotics.
I got a PICC line put in before I left the hospital and for the first week I was home, a nurse came to deliver my antibiotics and teach my mom how to do it.
While it feels great to be moving forward recovery and treatment, especially after getting sepsis, was incredibly isolating.
For the two months I was quarantined, I rarely left the house. My mom became my nurse and my chef, my dad a personal comedian to keep my spirits up and my husband was my contact with the outside world.
Cabin fever is real and I was itching to get out, go back to work and be around people, but people are walking petri dishes, and for someone with no immune system, that’s basically a death sentence.
In mid-February I was finally strong enough to resume chemo treatments and my oncologist said my immune system was strong enough to start (carefully) interacting with people again.
I was so excited to go out again, but I had to wear a medical mask everywhere I went.
At first, it didn’t matter to me, I was just happy to be outside the house, but when we were out, people would stare or look at me with a pathetic pity that made wish I was back within the four walls of my home.
There, people didn’t treat me like I was different or sick. I wasn’t the bald girl with the face mask. I wasn’t the cancer patient who almost died.
Inside those walls, I was just Daniela.
I finished my first round of chemo in early March, and in order to check if the cancer had been receptive to the treatment, I was scheduled for a PET scan.
The day after the scan, I got a call from my oncologist.
Not only had the cancer been receptive to the first round of treatment, I was completely in remission.
I was home alone when I got the call. When my mom came in the door, I ambushed her with the news and we just hugged and cried and thanked God for working a miracle.
Because it had only been one treatment, I still had to finish the other five rounds of chemo.
I finished my treatment in June of 2017 and though the rest of the treatment was an uphill battle full of needles, nausea and weight gain, I wouldn’t change a thing.
You can have a normal life again
The last thing they don’t tell you – cancer (often) changes your life for the better.
Going through the journey is tough. It is the hardest thing I have ever had to do, but in the end, I am glad to have gone through it.
Through my experience, I learned that cancer patients are some of the kindest, happiest, most positive people on this Earth.
Yes, there are hard days, and I will be the first to tell you that I spent many nights crying myself to sleep, wondering, “Why me?” But, after looking back at the experience, I can say I would not change anything.
Going through cancer gives you a new perspective on life, and it teaches you to not only enjoy the little things but to not let someone or something drag you down. It also teaches you to stand up for yourself and what you believe in because life is too short to let others dictate your thoughts and actions.
Nearly 600,000 people lost their lives to cancer in 2017, according to the CDC. I sat in the infusion room surrounded by some people who were facing a bleak prognosis and would eventually become part of that statistic. Others – like me – had a light at the end of the tunnel. But, no matter where we were in our journey, when we were in that room, we were all in it together.
In the place where death was knocking on many doors is where I – and many others – found the encouragement and hope to push through, and that is the greatest lesson I have learned.
But it won’t be the same one you had
Being in remission is great. It’s amazing to watch your hair grow out inch by inch, to know you never have to chemo or feel unbearably nauseous again.
Even though I still have to get check ups, it has been so liberating to just be able to get back to “normal life," but it hasn’t always been smooth sailing.
When I started this journey, I was expecting to finish everything and go back to how my life was - a fit newlywed in the prime of her life.
Instead I am having to redefine my identity to include “cancer survivor” and it hasn’t always been easy.
Chemo affects everyone differently, but for me it made me gain around 70 pounds, and because it was hard to workout during treatment, I lost all my muscle mass, too.
I am having to work and reteach myself how to exercise and be healthy. Sometimes I look in the mirror and I see an overweight person who just can’t seem to figure out how to get back in shape.
It’s on those days that I have to remind myself that yes, I do look different, but that’s because I AM different.
I am not a 23-year-old newlywed. I am not a runner. I am not a physically fit young woman.
My life after cancer is far different from the one I had before, and I love it. I may not be what or who I was, but I feel I came out better.
I am a 26-year-old journalist. I am healthy.
I am a cancer survivor.
Daniela Sternitzky-Di Napoli was born in Venezuela, but after moving around a bit, her family settled in Houston, where she grew up. Daniela is a University of Houston graduate and has been with KPRC 2 since 2018 after leaving her position at the Houston Chronicle. She lives in North Houston with her husband and two miniature dachshunds (that she is obsessed with).
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