On Monday morning I was sitting on my couch after having dropped off the boys at daycare. I had my laptop out, starting my work day, when I heard a familiar chime – there was an alert from the MyHealth at Vanderbilt app.
Sidebar – I live in Nashville, and we use Vanderbilt for all of our medical needs. Our kids were born there. We basically lived in their NICU with Jack for two weeks. Katie and I have primary care physicians from Vanderbilt. We trust them, we know them, and they do great work. But they have this app that is almost TOO useful.
The MyHealth at Vanderbilt app will send you follow up information from your appointments. You can pay your co-pay through the app and fill out any information they might need. But what also happens is that your test results will come to you first – even before a doctor can see them. And that’s what happened on Monday morning.
I opened the app and could not resist looking at the results of my ultrasound. There were a lot of things I didn’t understand (what the heck is an “isoechoic circumscribed lesion” anyway?) but two words took my breath away. “Multiple masses.” Katie told me to slow down, let me talk to my doctor about it. A few minutes later another chime said that my doctor was recommending me to a urologist, and provided me a number to call to schedule an appointment. I called and scheduled something for a few days out but just like before, my appointment was pushed to the most urgent option available. I was told that I was being referred to the top surgeon for this type of issue, and his name was Dr. Moses. But first they needed to tell me something, to set expectations.
They treat any abnormality where there are masses on the testicle(s) as cancer until proven otherwise. There was work to be done before I saw Dr. Moses, and I needed to move quick. And in this COVID world, that ain’t easy. I was referred to a walk-in clinic to have labs drawn. And let me tell you, they did NOT want me in there. I had to explain myself multiple times before they pushed me through. The lab work didn’t take too long, and soon I was on my way back to the imaging location to have a CT scan done. I’d never done one before…it was weird. They injected some goo into my veins (medical terms) to show contrast. The woman who gave me the IV said, “Okay, two things you need to know. You’re going to taste something metallic. That’s normal. And you’re going to feel like you’re peeing yourself, but you’re not. I swear you won’t be peeing yourself.” And you know what? She was right. It was the oddest feeling, but the scan took maybe 10 minutes and then I was out of there.
I felt like I’d crammed a week’s worth of stress into just a few hours. I napped. I played with the kids. My attitude shifted, as well. I decided that as long as I could, I would go outside and walk. I would breathe in the air. I would chase Jack and Evan down the hallway. I would tuck Katie in at night. I would play with my poor pup. I didn’t know when surgery would happen, that was still up in the air, but until that moment came I was prepared to do all the things I knew I would miss. And that’s exactly what I did.
Tuesday morning, I was called to come meet Dr. Moses. Katie came with me, we were both so nervous. He had a great bedside manner. He was straight with me. He told me they were going to have to remove the testicle and they’d have to do it with an incision just below my abdomen. I thought, yeah, I don’t like that! If they punctured a mass, the cancer could spread like wildfire. I liked that less.
And finally, at that moment, someone said the “c” word. Katie asked him, is this cancer? Officially? Could it not be just a mass or an infection? What are the odds that it’s cancer? And his response was, “I believe it is 99% cancerous.” Those seem pretty high to me. Along with the ultrasound results, he also had the results of the CT scan, which showed some lymph nodes that were enlarged and out of place. But he reassured us that testicular cancer has a 95% survival rate at this stage – stage 2. We caught it early.
But regardless of how early we caught it, I still was facing a surgery and potentially chemo and another surgery. There were – and still are – so many unknowns. At the time of this writing, I’ve had the surgery. It was tough. I am recovering. It’s been four days since, and I’m only beginning to feel a little better. I can only stand up in short bursts. It hurts me fresh every time Evan walks up and throws his arms in the air. He wants me to pick him up and throw him around. Jack wants to sit on my lap and read a book. I can’t do it. I’m sleeping in a recliner because it gives me the support I need. Today I’m feeling stir crazy. I helped unload the dishwasher and season some ribs we’ll have for dinner. But then I start hurting and I have to sit again. I realize this is a very sad paragraph, but I am not going to ignore those feelings. They’re offset with the happiness that I am getting quick care, that friends are reaching out to me, that work has been so flexible with me, that Katie is carrying the load without a complaint, and that my kids are making it work by sitting beside me and hugging my legs.
It’s cliché to say that it could be worse, but it honestly could. I could have a more aggressive cancer, or no support system, or a less-than-ideal medical team addressing my needs. Cancer or not, I am a fortunate person, and it’s my goal to remember this daily.
Hi Adam,
I know you don’t know me but I went to school with both your mom and your dad. For starters, as you know, you have been blessed with incredible Godly parents, with unshakable faith-even in the face of great loss so early in their lives. You have an awesome support system!
I know what you mean when you say that it happened so fast. My husband and I were minding our own business, lol, when he came home from OTR truck driving on a Tuesday afternoon in 2019. He felt fine until that Tuesday night when he started passing pure blood and was in horrific pain. He decided no ER when it slacked off slightly. I had a urologist in Oxford whom I contacted as soon as they opened the next morning which was July 17. They did a CT and found that his R kidney was totally covered in, what they thought, was kidney cancer-but they would confer with their specialist in that area and let us know. “Excuse me...WHAT??!”
That was the first, “Ok, WHAT just happened??”
Thursday July 18, we were asked to come back to Oxford (from Grenada) to meet with them. Well, as you know by now, that’s almost never a good sign. And we were right. It wasn’t good. It was “Stage 4 metastatic, clear cell renal cell carcinoma”, and they would need to operate to remove the kidney the next morning to stop the hemorrhaging.
(Head spinning-almost literally)
“...Excuse us..how...what..when?!”
We left in a daze. Not much talk on the way back. I began looking on the internet. Yeah, a little goes a long way. Lol. But there really is a wealth of information out there. A site you might want to check out is called Smart Patients. It’s a patient forum (all types of diseases, not just cancers). Very organized and easily searchable.
So, on July 19, 2019 in the early am, my husband said farewell to his right kidney, and part of the right adrenal gland (clear margins and all that..you know)
But there was a mass on his L adrenal gland, and a month later, after biopsy, it was found to be the same. (It was at that time, I discovered MyChart. A very valuable tool, once you learn to stop reading imaginary things between the lines. Lol!!)
Yes, heads still spinning. Truly dazed and confused.
We met with an oncologist and Bc of the nature of the specific type of kidney cancer, and the stage, they painted a very grim picture.
But here we are! 3 1/2 years later! Praising the Lord for every day, for each one is truly a gift.
It sounds like you have excellent doctors and that they have a plan of action to rid you of this terrible thing, once and for all! You are young and strong, and with your sweet Katie as your helpmate, and your beautiful kids cheering you on each day, I know that you’re gonna beat this thing.
Funny note: I got a 3 ring binder and printed out all the labs, CT’s, path reports, etc and kept them together. I just feel better if I can see it on paper. (A generational thing, I suppose. Lol) I took that book to every appointment with whatever dr we went to. If they didn’t have it, well here it is, right? So, my husband and I had decided early on we were gonna fight to “kill” this awful thing inside of him. So...consequently, that book became known as “The Murder Book” lol! I know it’s a bit hard for some folks to understand. But I bet you get it, right away. 😄
Adam, all my life I always thought the “f” word was the most terrible word that could come out of someone’s mouth.
Now, people like you and I know it’s not.
It’s really the “c” word.
I (we) will be praying each day for you and your precious family, and we’ll be following your progress.
I didn’t mean to write a book here. (Sorry) I just felt led to let you know that in our experience, the head spinning, tornado feeling does get better.
I’ve had that goo myself! It definitely feels like you’re peeing yourself! I hate that y’all are going through this but i am sending every positive thought, prayer, good energy y’all’s way! I wish nothing but healing and love for you and your family!
-kayla