I was experiencing fatigue which I was attributing to being a college sophomore in a pre-med program. I had night sweats, which I thought was due to my mom keeping the heat too high. To make a long story short, I found a small lump above my collarbone that felt like a super-ball. I played with it often. I finally went to the doctor; to get antibiotics for whatever was going on so I didn’t ruin Christmas by being sick… Spoiler Alert: I was wrong. In one week I was sent for blood work, X-rays, then CT scans, met with a surgeon, had a biopsy, met with an oncologist and had a surprise bone marrow biopsy. For those of you who don’t know what a bone marrow biopsy is, it’s basically when a health care professional gets an excuse to stab a patient in the back while they’re awake. Okay, it’s not THAT bad, but at the time that’s how it felt. Days later it was Christmas, the only thing I remember is everyone wanted to stare at me and cry…
I had a Port-a-Cath placed and started Chemotherapy on January 4th. A Port-a-Cath is a button under the skin that allows chemotherapy to be placed directly into a big vessel so it doesn’t ruin your veins. Since the Port-a-Cath was now a part of me she obviously needed a name. I named her Lucy; she was both my best friend and sometimes when she didn’t work correctly, we were enemies.
During chemotherapy, I had the most wonderful support system. No negativity allowed. My mother is Italian and worked at an Italian restaurant at the time so I was one of the few people in the world who GAINED weight on chemo. My mother made me eat no matter what. ‘Oh you’re taste has changed, that’s okay have some meatballs and sauce’… As chemotherapy went by, a routine formed.
Every Monday I had to go to the doctor. I had chemotherapy every other week, and on the off weeks my blood counts would drop and I would be at high risk for infection, so I would have labs and an office visit. My mother and I would make a ‘day’ out of it. This helped make us dread Mondays less; sometimes we even looked forward to our time together. We would go for lunch somewhere, eat like pigs, and then go to my appointment. I found out that whatever I ate at chemo would then be ruined forever so the routine became eat, chemo, home to sleep for a few hours, then nausea meds around the clock while I asked for a Dunkin’ Donuts bagel or a turkey Subway hoagie.
Losing my hair was one of the toughest parts of chemotherapy. I’ll be honest. I could handle the nausea, constipation, neuropathy, fatigue, and all the other things that go along with chemotherapy. I did not realize how vain I was. As a 19-year-old female, my hair was a part of my identity. I didn’t like any additional attention and losing my hair definitely would draw attention to the fact that I was sick. I remained a full-time college student during chemo, and man girls can be MEAN. My mom, my aunt, and I went wig shopping before chemotherapy started because I was told; by my second treatment all of my hair would fall out. We bought 3 wigs. I HATED THEM ALL. I felt like I looked like Ellie May with a giant ‘bump it’. Chemotherapy started, my second treatment came and went, my hair started to thin and continued to as time went on. I eventually finished 12 treatments of ABVD. I succumbed to a wig towards the end of treatment as I had little hair left. I never shaved it. I kept two strands of my own hair that looked like a bad case of male pattern baldness because I couldn’t let them go.
I had mouth sores, constipation, extreme fatigue, neuropathy, and continuous nausea but I was DONE. So what do you do next – you have an F*** Lymphoma party. I had the party about a week after I finished chemo. All of my friends and family came. It was a great way to celebrate and even though I felt like garbage I had the BEST time. During chemo, planning the party helped keep my mind off of what was going on and gave me something to look forward to.
When I got diagnosed with cancer I had asked for a few things. I felt as though for some reason, I deserved something. Like hey, this horrible thing has happened to you, no, it’s not fair, yes your life will be forever changed, yes you might die, so here’s something for your suffering. I asked for a new car, my dad’s exact words “you’re not THAT sick.” Ha. I then asked for an all expenses paid trip to Disney for my family and 5 of my closest friends. Again denied. I then asked for a party and a dog. I got both! I was a lucky girl. Bella is a Samoyed and she’s the best dog in the entire world.
During my experience with chemotherapy, I met Matt Maida, the best PA ever. He made my life so much better. Up until this experience I had never heard of a PA (Physician Assistant). Matt went above and beyond. He was the person who would explain things to my mother and me, he would encourage us on how things were going, and he was someone to talk to in a time of weakness and need. He would comfort in the times when things were hard. I could not have gotten through this journey without him. It was at the end of my treatment that I decided I wanted to be Matt. I wanted to make people feel like Matt made me feel. One thing led to another and I transferred schools and applied to PA school. I owe my entire career to Matt.
After finishing chemotherapy and having cancer, life changes. I had always wanted to be a doctor, from the time I was 4. To be a physician I would have to finish undergrad, go to med school, and do a residency. This would take approximately 9-12 years. To go to PA school would only take 3 more years. I could be helping people in 3 short years. God forbid the c-word came back – I would have a life, I would be able to have a career. I could potentially start a family. I’ve learned, as we hear many times, tomorrow is never guaranteed. With a history of cancer that is always the fear. So I went to PA school and did all of my elective work in Oncology.
I was fascinated. I shadowed Matt for an entire year before I started PA school. I connected with people like no one else could. I would watch providers talk to patients in certain ways and think to myself; you have no idea the effect the words you’re saying will have on this person. I could relate in a way that was special, but it also gave me more empathy, sometimes too much. I still go home and cry for my patients sometimes. I try my best to be like Matt. I try to be my patients’ biggest cheerleader. I think that it’s extremely important to have someone to encourage and support you during treatment.
My goals as a professional: To bring compassion to people suffering. To be a cheerleader. To be the caring voice and listening ear to those in need. To offer relief to those suffering in similar ways that I have. To use my experience going through chemo to help those currently going through this journey. To make sure no one ever feels alone. To share my stories of the crazy things people have said and done to me during my experience with cancer.
At the end of the day, I’ve learned time is not ever guaranteed. I have severe anxiety about wasting time, so much so that I feel anxious about being anxious because that wastes time. I try to make every day something to be proud of. If I help one person per day, my day is worth it and in the words of my late uncle, “It’s a great day to be alive.” My best advice to patients: Pick a medical provider whom you trust and are comfortable with. Don’t worry about hurting feelings. Having cancer is extremely personal and you need to trust and be comfortable with who takes care of you. Dr. Thomas and of course Matt did this for me.
Surround yourself with positive people. Attitude is everything. Manage your side effects with the medication the doctors prescribe. CALL when you have questions or concerns because we cannot help you if we don’t know something is wrong. Try to keep some sort of normalcy, and MAKE a routine. Cancer is an emotional journey and experience. We all could use some extra help both getting through it and being a survivor.
Sincerely, Erica Longstreet PA-C M.P.A.S.