I started noticing that what I assumed were my lymph nodes were becoming very large and started looking at possible reasons, hoping that it was just an infection. From the beginning of 2018, I couldn't afford health insurance from the job I held at the time, so I also didn't go to a doctor until April. The job I held was terminated in mid January due to the parent company ending their contract with the company I worked for, so I began looking for another job. I desperately wanted to get into my own field of forensic science, but it has been quite difficult to get a foot in the door. While looking for a job, I felt tired all the time and unmotivated which I thought was just some depression at the time.
Fast forward to March and I get a new job as a swim instructor at a company with a friend. I spent about 3 weeks at that job before one day I was working, my underarm started hurting. I decided I needed to go get seen even without insurance (very scary for me). I went to a clinic (Good Samaritan) that specifically helps uninsured people. They took some bodily fluids to run labs and told me to wait to get those results before seeing anyone else (unless it was an emergency). The clinic recommended I see a hematologist, however I never got to that point.
I had went to the clinic on a Friday and on the following Tuesday I got a call that my labs came back with some concerning results. They told me that my hemoglobin level was very low, 7.2 if I remember correctly. I later found out that the lowest that number can be in females is 12, without being considered anemic. The clinic then advised me to go to Northside hospital to the ER because to be seen by a specialist would take a week and that would be too long for me.
I packed a bag with 2 outfits (not sure why because I would be wearing a hospital gown for the time I was there) and off I went to the ER. When I got there, I got my blood drawn and a urine sample taken. My hemoglobin came back at a 6.4, which by the hospital standards is blood transfusion level. I received a unit of blood from the ER and was admitted to the hospital for further testing to find the source of the anemia. I stayed in the hospital from Tuesday until Saturday. The morning after the first unit of blood, my hemoglobin was still below a 7, so I got another unit of blood.
I luckily didn't have to be alone the entire time I was there. My partner spent as much time as possible with me while also attending university classes. My parents, sister, and family friend made the roughly 14 hr drive from Iowa to Georgia to see me. The day I was released, my friends (Megan and Jon) came to see me as well.
Every day in the hospital was a new test. From CT scan to axillary biopsy to PET scan. I didn't do very well with the first two procedures. This was really my first time ever getting any procedures done besides an ultrasound for gallbladder issues. I got to keep the pathology of the biopsy and a picture of the PET scan. The PET showed that all of my lymph nodes were affected which looks cool, but isn't the best thing. They also found that my liver and spleen were enlarged along with the lymph nodes and being anemic. Friday, April 6th I was diagnosed with follicular lymphoma.
The next week I met with my oncologist at his office. He went over plans for treatment and any concerns I had. I also was scheduled to get a bone marrow biopsy, a power port (for treatment), and go to a teach session before I started treatment on the 17th. I was placed on 2 chemicals for treatment, one is a monoclonal antibody which will target the specific cancer cells and the other is an non targeted chemical.
On my first day of treatment, I had a severe reaction to the antibody where I couldn't breathe. I had never had an allergic reaction to anything so I didn't know until I couldn't breathe that something was wrong. I got a lot of Benadryl that day and slept through the rest of the day. I still received the second drug that day and set up an appointment to come back the following day to try again. I had another severe reaction to the antibody (this time not nearly as bad because I knew what to look for), so they waited an hour to re-challenge the drug. It took me about 2 hours of getting the drug and I broke out in hives. So they stopped the antibody and gave me the second drug of my treatment. I have been taken off that specific antibody and will be put on another in 3 weeks.
I am lucky to have been accepted by Northside's financial assistance program, but there are bills that are not covered which includes prescriptions and radiology. I have been prescribed 3 types of nausea medications.
Along with any bills that I get from the hospital or my doctor's office, I still have to pay for every day life as well. I bought a car last year that I am still paying off, which also includes insurance for that. I have rent, utilities, and a power bill to pay monthly. (Also trying to find a new apartment if I can) Lastly, I still need to maintain a good diet with plenty of fruits and vegetables, especially because I am anemic and treatment will push my counts even lower.
I still plan on working as much as possible, but there are concerns about where I work. I was meant to teach children how to swim, but I have been advised to stay out of the water and if my WBC counts get too low, I should stay away from large crowds of people.
I am asking for any type of support you can give me. Even just sharing my story will help so much. This journey won't be easy, but I will get through it.
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