On August 15th, 2022, I gave birth to my second healthy and beautiful baby boy. My pregnancy and delivery were straightforward with no significant health concerns. I managed to evade contracting COVID-19 throughout the pandemic and pregnancy by working from home, limiting my outings and taking precautions. Unfortunately, that luck ran out in December of 2022 when shortly before Christmas, I tested positive for COVID-19 along with my newborn son Oliver and oldest son Christian. Little did I know that COVID would be the very least of my health concerns for the next 17 months of my life.
I became very ill and unable to wrap Christmas presents for the kids or any of my family. My incredible husband Gjon rose to the occasion and wrapped every single gift while also taking care of the kids. As time went on, I felt increasingly weak, tired and just completely “off”. I started experiencing other unpleasant symptoms and never improved while Oliver and Christian were feeling much better. I chalked my declining health up to being a tired Mom with a newborn and toddler, the fatigue of the holidays and thought maybe I was experiencing long term side effects from COVID.
Desperate to feel better and resume my “normal” life, I went to Urgent Care. Much to my surprise, I tested positive for pregnancy. After the doctor examined me, she mentioned that my Uterus felt very enlarged, which did not make sense considering I had a baby 4 months ago. It should have been shrinking in size, not getting larger. While I knew being pregnant at this point was nearly impossible, they performed the test three times, all of which yielded a positive result. I also went for a blood test to confirm the pregnancy, which estimated me to be 7 weeks pregnant. My husband and I both knew the timing did not make sense and that there must be some mistake. Nevertheless, all medical signs pointed towards pregnancy.
In January of 2023, we went to Philadelphia to visit my parents where I ended up in the Emergency Room deteriorating even further. I had a resting heart rate of 165 (tachycardia), my thyroid levels were off the charts and many other values from the bloodwork were not within normal range. I think this was when I began to silently panic. It seemed as though no matter how many times I was evaluated or what department came to examine me, no one could provide a clear diagnosis.
However, the OBGYN physician decided to investigate further with additional bloodwork and test the Human chorionic gonadotrophin (hCG) level again, still treating me as a pregnant patient. Healthcare providers measure hCG to confirm a pregnancy and to provide details on how pregnancy is progressing. It has a unique role in supporting pregnancy and is typically found in urine or blood around 10 to 11 days after contraception. The hCG levels are the highest towards the end of the first trimester (10 weeks of pregnancy) then start to decline. A pregnancy that is anywhere between 27-40 weeks in the last trimester usually has an hCG level of 3,640- 117,000.
Mine resulted in 2,740,000.
With this result, the OBGYN suspected Gestational Trophoblastic Neoplasia (GTN), an extremely rare uterine cancer. This was when I learned that the hCG level would be my main tumor marker.
MRI and CTI imaging were performed right away to confirm the suspected diagnosis. One set of test led to another, which ultimately revealed a large tumor in my Uterus. It also confirmed that the cancer had spread to my liver and both of my lungs with multiple nodules and tumors. When I saw the images on the screen, I just kept saying to the doctors “But I have 4 month old baby at home. I’m only 33 years old, are you sure those are not someone else’s images?” I was so sure that there had to be some sort of mix up.
I called my husband on the phone with my Mom at my side to update him with the news while he was watching our babies, and immediately broke down telling him I was going to die. I saw all of tumors scattered throughout my body and with how awful I felt, my life began to flash before my eyes. I was thinking of everything I was going to miss; all the firsts with my baby, a beautiful life and future with my children and husband, not getting to see my boys get married or meet my future grandchildren. I felt sick to think my precious babies were not going to have me in their lives and would have to suffer the trauma of losing their mother.
Everything continued to happen very quickly. The medical team said I did not have time to transfer back to Maryland to be close to home or my children. I was not medically stable enough to survive a transfer, and any delay would likely allow the very aggressive cancer to transfer and grow even more rapidly. I received my diagnosis on Friday, January 13th (go figure) and began my first treatment of Chemotherapy on January 14th. I had a PICC line inserted in my arm and within an hour, the first bag of chemotherapy was administered.
While dealing with the mass of information thrown my way and treatment starting, I did not get to say “goodbye” to my children before they went back home to Maryland. My in laws drove from New York to Philadelphia to pick up the kids and took them home. I saw my children when I was able to, but it was nowhere near enough to ease my fracturing heart. Slowly I felt like with each passing day, my life was slipping away and feared my children would forget about me. Dealing with the emotional outfall would prove to be more difficult for me than the physical torture and side effects from chemo.
Reflecting back, my treatment regimen was brutal. The doses of chemotherapy were extremely high. I had to receive three different types of chemo every week, alternating between inpatient and outpatient visits. I lost all my hair, eyebrows, eyelashes, and suffered mouth sores (Mucositis) so severe I was unable to eat or drink for 8 days on more than one occasion. I survived solely on IV saline/fluids and the doctors were trying to persuade me to have a feeding tube inserted, which I declined. Every week I needed blood transfusions, platelet transfusions, Magnesium, and Calcium via IV. The list was never ending. I was not able to do simple things such as walk, talk, be with my children, be a wife or even breathe fresh air outside. Life as I knew it was most certainly gone.
I continued this grueling cycle all the way through early May 2023 when my body shut down. GTN itself was highly sensitive to the chemotherapy, so each week the values of the HCG decreased. However, to be cured the HCG had to come down to zero from 2.7 million. This was not a quick process and moved even slower the more it decreased. In May, the doctors had no choice but to change my course of treatment. Chemotherapy was destroying the cancer cells in my body, but it also ruined all of the good cells. This put my body into crisis mode and completely wiped out my immune system making me extremely immunocompromised.
The doctors switched me to a new treatment called Immunotherapy, where the drug works with your own immune system to identify and attack the cancer cells. This was a major turning point in my treatment, given that this was administered once every three weeks in an outpatient setting as opposed to every single week inpatient. The treatment itself was approximately 45 minutes, compared to 24-36 hour chemotherapy infusions that I was undergoing. The biggest benefit was that my doctors and family helped me facilitate transferring my care from Philadelphia back to Maryland. This meant I was able to return home to my husband and children while continuing treatment.
I continued immunotherapy through October 2023, at which point my doctors recommended I undergo a hysterectomy and lung wedge resection. The hCG level had not yet reached zero and one nodule on my lung was not going away. I had both surgeries performed at the same time with multiple surgeons, and the recovery was tough. I focused on being able to go home to my children once I was discharged. However, I was not able to lift anything over three pounds for 12 weeks and had a lot of restrictions. I had no idea how I would care for my children or myself, but with the help of our families, we managed. Recovery from surgery and immunotherapy continued through May and I finally completed my last treatment on May 30, 2024….a day I thought would never come!
While I was waiting in the Skip Viragh Outpatient Cancer Center at Johns Hopkins for my last immunotherapy, I checked my emails and saw that Johns Hopkins was hosting this event. Right away, I signed my entire family up and decided we would not miss it. I feel so very lucky to be able to physically do this walk and be strong enough mentally to do it. I am proud to pay tribute to the fight for my life that God and my family helped me survive, and honor all of the other survivors and warriors. It is not lost on me that either a person beats cancer, or ultimately the cancer beats the person. I am eternally grateful that I am one of the patients that are able to be part of this survivorship and feel so blessed to be present for this moment. I could not have asked for a better healthcare team of nurses and doctors. I feel privileged to have received such excellent care be treating by people who truly were invested in my health. Please consider donating to support me in this fundraiser to raise awareness and work towards progressing treatment options for women even further.
Finally, I want to issue a massive THANK YOU for however YOU have supported me in this fight through hell. Whether it was by texting, praying, sending care packages, cooking a meal, sending a card, flowers, helping with the kids, etc. I am forever indebted to you. I truly believe that every single person that took the time to think of me or reach out to me played a part in helping me kick cancer’s ass! This has renewed my faith in God in a way that words cannot do it justice, as well as refreshed my spirit for humankind. It has shown me that kindness and compassion matter and has made me a gentler person. I am a better Mother, Wife, Daughter and Friend having gone through this trauma.
Even though I am done with treatment and surgeries, my recovery is still ongoing. Please continue to support me and reach out. Through therapy, patience with myself, support from family and belief in God, I know there is a bright future in store for me.
I have waited a long time to say it….are you ready?! Shout it with me….
FU** YOU CANCER!!
