In this three-part series, guest writer Megan Conley describes her experience with kidney cancer. Megan is a featured speaker at the KCA’s upcoming IKCS 2020 and Virtual Patient Symposium (register now).
I finally had a diagnosis – chromophobe renal cell carcinoma – and a plan to surgically remove part of my kidney and then COVID-19 hit.
It was March 2020 and there was no way I could mentally prepare for a surgery during the pandemic because it was an unprecedented situation. The quarantine began and parts of our everyday lives started to slow down, but cancer did not stop.
Facing a cancer diagnosis is hard enough, but the pandemic added another level of anxiety and brought back pre-biopsy feelings of uncertainty. It was hard to imagine that certain cancer treatments would ever be considered elective, but they were. I was faced with the difficult decision whether to proceed or delay my surgery. It seemed selfish putting my family and the medical professionals at risk by going forward, but not knowing when the virus would pass, I felt the risk was worth the reward and I just wanted to get it all behind me.
My urologist was in Washington D.C., so my husband and I cancelled our flight and drove 14 hours straight from Florida to minimize our exposure. I lived in D.C. for 4 years and when we arrived, the city was not how I remembered – it was a ghost town. Having been to the hospital in D.C. before, it was an eerily different experience this time. A single entrance was designated for only surgical patients entering the building. I was asked a series of questions about my recent whereabouts and any possible symptoms. My temperature was taken and I was given a blue wristband to let staff know I was cleared to enter the building. The number of cancelled surgeries was evident by only eight patients sitting in what would typically be a full waiting area. In the weeks leading up to my surgery I remained in regular contact with my urologist because of the evolving pandemic situation – there was no guarantee my surgery would proceed as scheduled. As I looked around the waiting area, I considered myself and the other surgical patients “lucky” given the circumstances.
I was told a typical kidney cancer surgery patient that has undergone a robotic procedure can usually leave the hospital after two days.
The morning after my surgery, the blood in my Jackson-Pratt drain looked good and the urine in my catheter bag was fairly clear so it was determined my catheter could be removed and that I was recovering well. I was told bleeding was a possible but a rare (1-2% of patients) complication of surgery. When I used the restroom for the first time my urine was slightly darker than what was in my catheter bag. Given COVID-19, my doctor wanted me to avoid an emergency room situation and recommended that I stay an extra night in case of complications.
As I continued to go to the restroom, my urine became the color of the medical term: “red Kool-Aid” and my hemoglobin levels dropped. I was sent down to interventional radiology where it was determined that I had two renal artery pseudoaneurysms, which had to be embolized and plugged with coils.
I spent five days in the hospital and because of the pandemic my husband was not allowed to be with me. Without him, I used a walker to get around. My second night in the hospital, I used my walker to help me get over to the window where I flashed my flashlight down to the street so my husband could find my 5th floor window and wave to me. Just being able to see him from the window put me at ease.
Being in the hospital without my husband made me realize how much we take for granted having loved ones with us. They are our biggest supporters during the recovery process. I know not having him there slowed down my recovery. Being alone in your room for days takes a mental toll on you too – it can be depressing. Also, loved ones help us process information – doctors and nurses are coming in to speak with you and you are not of clear mind to ask questions and remember what was said.
Aside from being alone in the hospital, I had anxiety about COVID-19, the “invisible” virus – I wondered if I had been exposed. I wondered if the hospital was taking all the right precautions. I was nervous to touch the food or drinks delivered to my room. I was afraid the nurse coming in to take my blood or give medication could possibly be exposed. I worried about the patient in the room next to me with special signs on their door and medical staff going into the room with personal protective equipment. I was afraid to leave my room, but I had to get out and walk the halls. There were a lot of unknowns at this time and as a patient sitting in a room alone for days, a lot of time becomes available to think and worry.
We won’t know the true impact COVID-19 has had on cancer patients until we have more data. For myself, I know the virus affected my mindset. I had additional decisions to make about whether to risk exposure, whether my treatments could proceed, and worry about treatment disruptions and the long-term effects on my health. I sympathize for patients that had to postpone their treatment. The pandemic has lasted longer than anyone thought. I know those patients are dealing with a tremendous amount of COVID-related anxiety and worry about the long-term effects of delaying their treatment. COVID-19 has been a stress test of our healthcare system. It is important that we learn from this experience so that the system is resilient to future pandemics or similar disruptions.
Disclaimer: This was my experience as a kidney cancer patient and not a medical professional. I have included some insights that I wish I would have known before navigating the healthcare system with a cancer diagnosis. I hope other kidney cancer patients find these insights helpful.