The Long Road to a Cancer Diagnosis: A Personal Story
PART ONE - First symptoms to diagnosis:
In August 2021, I had just gotten back home from a trip to New York, where I spent a couple of weeks with my family as well as hopping around the city. When I got home, I realized I had a cough. It was small at first, but in the age of COVID, the smallest cough freaks those around you out, and I didn’t want to be that person. I got tested for COVID, and it was negative. I figured it would go away with time. My body had just traveled, and maybe I was physically worn out. The cough persisted and I began having body aches– again, another sign of COVID. I tested again,… still negative. I went to my PCP about the issue, and there was not much discussion before I was prescribed a steroid inhaler with the thought it may be asthma or allergy related. I do not and have never had asthma. In addition to the steroid inhaler, I was told to take cough medicine. The body aches were more like severe lower back aches, and I was seeing a chiropractor and taking lots of Tylenol. Then fatigue began to kick in. I would sleep for 12 + hours some nights, never feeling refreshed. By this time it was mid-September. I was due to start in-person classes in two weeks, the first in-person quarter since the pandemic, and I still had this persistent cough. I called the nurse hotline for the school I go to and they told me to go to the emergency room. This didn’t feel like an emergency per se. However, who am I to argue with a medical professional?
When I got to the ER, I explained my symptoms and mentioned the many negative COVID tests I’ve had. I was put in the COVID unit in the ER regardless. They gave me a chest x-ray and a COVID test. I was negative, and they didn’t find anything. They sent me home.
Up next– night sweats. I would wake up in the middle of the night drenched in sweat. The only thing that would help me go back to sleep was a scorching hot bath and changing into dry clothes, and blow-drying my hair. By this time, I had seen my doctor a couple of times without success. I eventually made a spreadsheet recording the fluctuations in my body temperature for over a month. By this time, my cough was so severe it was affecting my work. I would miss classes because I was too tired to get out of bed. Eventually, I could not walk my dog because I didn’t have the strength, and I would cough every step. I was ingesting an absurd amount of cough medicine and taking Tylonal constantly.
I knew something was wrong, but I truly thought my doctor would catch it. After I showed him the spreadsheet of my body temperature fluctuations– the first time I remember advocating for myself– he referred me to an infectious disease specialist. By this time, it was the week before Christmas 2021. The Infectious Disease (ID) specialist ran over 20 blood tests and performed a CT scan. My blood test revealed I was severely anemic, and their office told me to go to the ER for a blood transfusion. When I got to the ER and told them what the ID specialist had told me, they tested my blood again. The ER doctor said I was fine (above the hemoglobin level to administer a transfusion), and they were going to send me home until I demanded another blood test– the second time I advocated for myself. This time the test showed I needed a blood transfusion. I was admitted to the hospital overnight and was given my first of many blood transfusions throughout this process. When my hemoglobin reached the level deemed safe, I was released from the hospital on Christmas Eve.
The night of Christmas Eve was a tough one. Although I was grateful to be released from the hospital and back home with my family, I was scared because no one explained why I was severely anemic and needed to go to the ER for a transfusion. The Infectious Disease specialist had spoken with the ER while I was admitted and told them he would discuss my health concerns when he saw me at my follow-up appointment after the holidays, so the ER didn’t tell me anything. Basically, I knew something was wrong but didn’t know what. That was until around 6 pm on Christmas Eve I received a MyChart notification. My CT scan results had come in… multiple masses were found. The larger two mentioned were in my chest and my left ovary. I read the results as my mother prepared to leave for a Christmas party. My brother was sitting next to me, and he saw the color drain from my face. He asked me what had happened, and I told him we would talk in a minute. I held my composure as I told my mom I love her as she walked out the door. The moment I heard the door close and lock behind her, I began sobbing. I wanted her to have a fun time with her friends, hopefully forgetting about my decline in health for a moment before I told her. Although this was not a diagnosis, I knew our lives would change drastically.
I had a follow-up appointment with the ID doctor after the holidays that he canceled and did not reschedule. With the newfound knowledge of large masses growing in my body, this was unacceptable to me. I could no longer stick with this medical system after months of getting nowhere with my PCP and the canceled appointment to discuss these horrific CT results. Now that I had CT results saying I had masses in my body, surely I could get an appointment to see an oncologist somewhere. A friend of mine began calling hospitals in my area. I was too exhausted to do anything at this point. I’m sure some of you reading this are aware– Most hospitals need an oncologist referral to be seen by an oncologist. Even if you have CT results showing you have masses. Even if you explain the situation and cancel appointments if you don’t have a referral, there is not much you can do. My circumstances were dire at this point. One hospital in my area said they’d “be in touch” if they could get me in without a referral– we still haven’t heard back…
Since the CT said there was a mass in my ovary, and no hospital would take me without an oncology referral, I needed to see a gynecologist ASAP. I called the scheduling department of the healthcare system I was in and told them about my CT results and how urgent this situation was. They told me the previous gynecologist I had seen once, two years prior, was on vacation for the holidays. I told them I could not wait that long, and they scheduled me for the first available appointment. The day before the appointment, the office called and canceled the appointment. They stated they did not want to encroach on other gynecologists' patients and that I needed to wait till they came back from vacation. I explained the situation, and they said they could not help me. And after strike three, enter...Candy.
My friend, who was helping me, knew Candy Hammeras. I had never heard of a “patient advocate” before, and someone who could actively take the lead in navigating the healthcare system on my behalf was a dream at that point. However, I was fortunate enough for it to become a reality. Candy began the nonprofit Cancer Teamwork Response (CTR). This allows Candy to provide patient advocacy services to those facing their cancer diagnosis at no cost to the patient. This was crucial for me and many others she has helped. From the moment I was connected with Candy, she began fighting for me. She called me immediately and listened to my story. She said she could help and that she would call me back shortly. That day, Candy called me back. Miraculously, she booked me an appointment in the gynecologic oncology department at a top hospital a few days later.
In January 2022, I had my first appointment. They ordered blood tests and an ultrasound. The oncologist I met with at first explained various aspects of what she did, what this could be, and the next steps. They scheduled the biopsies shortly after that. The biopsy result showed the mass was not ovarian cancer but rather a different type of cancer. On January 26th, I received my diagnosis. Advanced stage IV bulky Hodgkin Lymphoma. Lymphoma is a blood cancer that spreads through the lymphatic system or lymph nodes. Stages 3 and 4 are considered advanced. According to the American Cancer Society (ACS), Stage IV “has spread widely into at least one organ outside the lymph system, such as the liver, bone marrow, or lungs.” ACS also classifies Hodgkin Lymphoma as a “bulky disease” when “tumors in the chest that are at least ⅓ as wide as the chest, or tumors in other areas that are at least 10 centimeters (about 4 inches) across.” After receiving my diagnosis of Hodgkin Lymphoma, I was sent to the appropriate oncology team. Remarkably, the gynecologic oncology team kept following up with me to ensure I was okay. This was an entirely different experience than what I had previously encountered with the other health system I was in.
Candy was in my corner from the moment I connected with her. I struggled to get the care I needed to survive until I was connected with Cancer Teamwork Response. I have seen firsthand how lives are impacted by this organization and the daunting need the world has for patient advocacy.
