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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). 

Read part one: “For Megan Conley, an Unexpected Diagnosis”.

Read part two: “How much we take for granted.”


After five days in my Washington D.C. hospital following a partial nephrectomy for chromophobe renal cell carcinoma, my husband and I went to stay with my parents in Virginia.

Stella

Upon my arrival, I learned the health of my 13-year-old basset hound, Stella, who made the journey to D.C. with us from our home in Florida, had taken a turn. Ironically, she had a tumor in her stomach that the vet believed was cancer. 

Stella was going to be my recovery coach. That night, I stayed up lying on the floor next to her as she howled in pain. A vet came to the house and put her down the next morning. My family was so happy that I was out of the hospital, but we were devastated to lose Stella.

Between surgery and losing my best friend, I ran a stress-induced fever of 101.5 degrees. My immediate thought was I had developed an infection or contracted the COVID-19 virus and worried that my parents and husband had been exposed. I was devastated and my family was concerned that my emotional state was going to impact my recovery because I was hyperventilating from crying so hard and I would not eat. 

A few days later, I said goodbye to Stella at her grave and my husband and I drove back to Florida. Having had two renal artery pseudoaneurysms after surgery, I was concerned about additional complications the whole ride home and spent the next few weeks taking it easy, fearful to move too much and cause another bleed. During a follow up video conference with my surgeon, my incisions were healing well, my recovery was on track, and each day I felt more like myself. Prior to my surgery, I made sure to establish a relationship with a new local urologist in case I had any complications and for my treatment going forward.

FaceTimeing with my husband after my third complication. At this point, I was over it.

I was four weeks out from my surgery and feeling pretty good until I experienced another complication. I woke up in the middle of the night, had a really hard time urinating until I passed some clots, and then then urine turned the color of red Kool-Aid again. I had a pit in my stomach because I knew something was wrong. I packed an overnight bag and my husband dropped me off at the urgent care entrance of our hospital – no visitors allowed in due to COVID-19. A third pseudoaneurysm was identified and was treated with another coil embolization by an interventional radiologist.  I spent a couple of days in the hospital to make sure the bleeding subsided. 

I was not expecting additional complications a month after my surgery.  This set my recovery back both physically and emotionally. I became hyperaware of symptoms that I may or may not have needed to be concerned with.

At home, a few days after I was released from the hospital again, I woke up in the middle of the night and did not know where I was.  My chest was tight, I felt nauseous, off-balance and my hands were clammy.  I also had pain and swelling my groin area from the procedure and placement of a Mynx a few days earlier.  I called my urologist that morning and he advised me to come in and have my blood pressure checked.  After a day of vital checks and some tests, the physician’s assistant came in and said everything looked good, it was likely just anxiety. 

Anxiety? I remember wondering how I could feel anxious sleeping in my own bed.  In that moment, I realized how much grief I had been through in the past year – leaving my job, moving to a new city, salpingectomy from my ectopic pregnancy and other gynecological issues, cancer, COVID-19, and losing my dog. I just kept pushing on without recognizing the emotions I was feeling and neglected my emotional health. I tried to keep it together for everyone and act like everything was okay. 

I especially tried hard to keep it together for my parents because I am their only child and I did not want them to worry. If I seemed scared or sad, I did not want them to feel it – I would cry in the shower to hide any sadness or fear I harbored.  If I could have done things differently, I would have been more open about how scared I was. 

Life After Kidney Cancer Will Be Different

These past several months still seem surreal.  Some days I ask myself, “did that really happen?”  I was very fortunate my tumor was incidentally found; my treatment was straightforward; and, I have a favorable prognosis. 

On the other hand, I do not know if my anxiety will ever go away.  Since my surgery and complications, I have recovered from the physical trauma to my body; however, I continue to cope with the post-traumatic stress brought on by the diagnosis, surgery and subsequent complications.  My plan going forward is to stay positive and self-aware of how I feel both physically and emotionally to do whatever I can to stay ahead of any anxious feelings. 

I was also fortunate to have a close family friend to speak with who was further along in her kidney cancer journey. Talking to her through my scans, tests, biopsy and the surgery was so comforting.  As my kidney cancer mentor, I look up to her because she continues to battle something much bigger. 

Nancy Moldawer, RN, MSN, Co-Chair of the KCA’s Clinical Advisory Board, on managing anxiety and depression. Visit our video library.

I know every kidney cancer patient’s journey is different, but we all share similar emotions, especially anxiety, throughout our journeys.  We all have those “why me,” “what if,” “this is it,” and “I cannot believe it” thoughts.  We have different stages of anxiety. The uncertainty between when something is found to when it is officially diagnosed. The period leading up to your treatment and throughout. Post-treatment and that “what now,” “is something wrong,” “is it really gone,” “what if it comes back,” “scanxiety” feelings. 

Finally, what I am not familiar with, but I am aware of are the feelings of those patients that continue to fight, but it is not my place to articulate. To all kidney cancer patients, just remember, you cannot control the type of kidney cancer you get, but how you handle your journey once you are diagnosed is in your control – empower yourself to make the decisions that are right for you!

Recovered and working as a kidney cancer patient advocate.

Lessons Learned

  • Life does not stop when you have cancer or when you are recovering.  You cannot let external stress affect your health or your recovery. 
  • As a kidney cancer patient, awareness of your emotional health is extremely important throughout your entire journey, including remission. Being cognizant of emotions and finding ways to manage anxious feelings will help manage stress.  It is important to do .  what is right for you.  I recommend surrounding yourself with a solid support network, like family and close friends, which can help you to talk about your feelings and work through your anxiety.  Other recommendations include: having faith, connecting with other kidney cancer patients, keeping a journal, exercising, meditating, getting enough sleep, eating healthy, drinking plenty of water and having a positive mindset – it can all add up and make you feel better.
  • If you decide to have your surgery done at a hospital that is not local, make sure to establish contact with a local urologist and hospital prior to your surgery.  If you have complications, it is easier if you already have a relationship with a local urologist.
  • You are not alone, speak with other kidney cancer patients.  In my opinion, it is better to seek out other patients and speak with them one on one instead of messaging on social media threads.  An individual patients’ perspective can be more personable and relatable.  Social media threads are one way to connect with other patients, but use them carefully because they can cause a patient more anxiety. 

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. 

1 thought on ““Life after kidney cancer will be different” (Part 3)”

  1. I loved reading this 3 part blog. I also am on my journey with Chromophobe Renal Cell Carcinoma. Had my surgery 7 weeks ago! I’d love to connect with Megan somehow.

    Kayla Bulkley

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