Being Diagnosed: My Stage 4 Journey

Remember the spring of 2020? When absolutely nothing major was going on in the world? While everyone else was dealing with the pandemic that shut everything down worldwide, just after my 38th birthday, I also was given the news that I had stage 4 metastatic melanoma. To make it more fun, I happened to be 24 weeks pregnant with my fourth child.

We found it because it had spread to a giant brain tumor. I was super sick and couldn’t get out of bed. You know what is awesome about having a brain tumor (yes, even for this there is a silver lining)? It’s really hard to remember the specifics of the time. I’ve pieced together most of that year from a journal my husband kept. But he says it’s actually a good thing that I don’t remember how bad it was. I was having horrifying headaches that were torture, but no one could figure out what was wrong. I would have them but they would be gone by the time a medical professional was in the room, so it seemed like my husband was making it up. He actually filmed an episode as proof that it really was happening and it’s hard to watch. He wishes he could forget and says I’m lucky I don’t remember.

2020 was a bad year for us overall and pretty much a blur still. The more time passes, the more I remember, but it’s still pretty spotty. I healed amazingly well from my brain surgeries. It was expected I would need a brain shunt to leave the hospital, but I didn’t. I was discharged after two weeks the first time and one week the second time. I had two brain surgeries and early c-section, and then I got to start the magical immunotherapy.

With all the new medical protocols during COVID, I had to get special permission for my husband to be with me at oncology appointments because I couldn’t remember anything that was said to me. What drugs are you on? No clue. What do you take that for? Great question. When did you last go to the dermatologist? I wish I knew. So he took copious notes and answered all the questions my broken brain couldn’t. I was on really high-dose steroids to try to slow the tumor growth until I could have the baby and start immunotherapy, so between the tumor and steroids, I could barely function. Definitely couldn’t drive. I was preparing to be on immunotherapy for at least three years, after getting a combo of two drugs, four times.

It was all pretty amazing. I had no side effects from immunotherapy. I got the initial combo drugs for the four rounds, once every three weeks. By the fourth time, I could even drive myself to the doctor’s office to get it. I felt great. Like I was getting my life slowly back.

That was when everything hit the fan. I started acting weird. I wasn’t making any sense. My husband rushed me to the hospital but no one could figure out what was wrong with me. It was almost 24 hours of my being delirious that my oncologist realized it was encephalitis that was a side effect of my immunotherapy. He quickly got me onto some new drugs and upped my steroids. It meant staying in the hospital again but I soon was out and able to be among the living again.

Then a couple months down the road I couldn’t eat, and what I could, wouldn’t stay in. I rapidly lost weight. I ended up having a seizure and was again hospitalized. This time it was for enteritis, another immunotherapy side effect. My electrolytes were totally out of whack and they wouldn’t let me leave until they were stable.

I was on a ridiculous amount of steroids for almost a year. I had to go through special testing to be sure my body could still produce cortisol as I was weaned off of it really slowly. I didn’t feel human. I couldn’t take care of my family. Being a mother defined me, but I got so weak I couldn’t get myself up off the ground, let alone pick up my newborn. I felt totally defeated. Being a mother is how I defined myself and I couldn’t take care of my kids. I actually got in a fight with myself because I knew in my head how to do the laundry properly, but my arms wouldn’t listen and I kept messing it up. I knew I was messing it up, but I couldn’t change my actions.

The amazing thing is I’ve been in remission since January of 2021. I should have died from this disease, and it isn’t supposed to go into remission, but thanks to advances in medical treatment I’m actually in remission. Even the PA for my oncologist told me that in a 40-year career, I’m only one of three she has seen go from where I was, to where I am now.

What they don’t warn you about is the terror that never leaves. Even at this point I need to see my oncologist every three months and get scanned for tumors every six. The scanxiety that comes up before each scan is debilitating. I’m on a low-dose anxiety medication to make daily life tolerable, but before scans I still melt down in fear at least a week before and need something stronger to take me down from the ledge. I was in therapy for the better part of a year (can we talk about how hard it is to find a therapist who is skilled in treating this type of trauma?) because even though I’m technically fine now, that can change any day. I know the reality of recurrence. The chance that cancer in some form or another will eventually kill me, is very high. The clock of time clicks down loudly in my ear.

I have four young kids. For the better part of one and a half years, my life was on hold because of cancer. Having four young kids causes enough anxiety for any person on any day. But adding in the fact that I have been through this intense trauma and I live most every day in fear that I will leave my children too soon, makes it too hard to bear some days.

I know we all will die someday. That is one of the grim realities of life. I suppose this whole ordeal has made me realize what really matters. And who really matters. I feel like I live each day to the fullest that I can and don’t take things for granted that I once did. I have made amazing friends on various online cancer support groups. Many are other young parents who also deal with balancing kids and cancer. It’s a very hard road to walk. I have lost a few friends along the way, and I know in the end I will lose many more. We all just take life one day at a time and pray that while we are here we are able to make a mark. In the lives of our families. In the lives of our friends. And in our community.

Want to hear Jenney read this post? Click here to sign up for Perkatory on Thursday, November 17th, 2022 at 7:00 pm EST!