Adam Johnstone shares his testicular cancer journey that included
5 surgeries and 4 cycles of VIP chemotherapy. He was 19 years old. Listen to Adam, as he shares his cancer experiences and life now - six years after his cancer diagnosis.
Don’t Give Up on Testicular Cancer podcast
Episode #3 – Life Goes On – One Testicular Cancer Survivor’s POV
October 15, 2020
Joyce Lofstrom 0:08
Welcome to Don't Give Up on Testicular Cancer for cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer.
I'm your host, Joyce Lofstrom, a young adult, and adult cancer survivor and Max's mom.
So, my guest today is a very special guest for me and the Max Mallory Foundation. His name is Adam Johnstone, a testicular cancer survivor. And he's going to tell us more about his journey with cancer.
But he was also Max's Imerman Angel. And if you listened to our previous podcast, we did talk with Johnny Imerman who founded Imerman Angels.
But today, I really want to focus on Adam and his story. So, Adam, thank you so much for being part of the podcast today.
Hi, thank you for having me.
So, let's just start and learn more about your journey with testicular cancer. Can you tell us what happened and when and just any details you like to provide?
Adam Johnstone 1:27
Sure. So, I'll start before my actual diagnosis. When I was in late high school, I had an issue
where I was hanging out with friends. And eventually, it felt like I sort of sat wrong. It sort of felt like I sat on a testicle, and that it hurt. And it was a bit it was a bit heavier, slightly a bit lower than the other. And, of course, I chalked it up to “Oh, wow, I must have just sat wrong.”
And then, as I was going through that last year, so of high school, it began to grow and grow.
Adam Johnstone 2:04
And at that point, I didn't want to think it was anything serious. So, I didn't do anything about it.
And by the fall of 2013, I had my right testicle the size of about softball.
Yeah, very problematic. And at that point, being the son of a single mother, it's sort of uncomfortable to talk to a parent who might not know you're afraid, might not understand. And it's scary to say that something is wrong with your private parts when you're talking to a family member, especially a woman.
If I had a brother or a father, I'm sure it would have been a bit more of a comfortable conversation. And growing up in sort of a middle class, like lowerish, middle-class family to a single mom, I wasn't sure what our health insurance situation was either. So, I didn't want to face any of those, sort of, difficult factors, you know?
Yes, I do.
I kept sweeping it under the rug, even though it got to the point where people were noticing this bulge in my pants. And high schoolers and like 19-year-olds being 19-year-olds, they all thought it had to do with my size, and not the fact that I had testicular cancer, and no one really wanted to confront me about that. And I didn't want to confront anyone about that.
So, I just let it happen.
In January 2014, I had stopped going to New Mexico Tech and moved back to Albuquerque, so I could return to UNM for music. About a week before the semester started. I had some friends over. We were just having a good old time, we had pizza, and all of a sudden, I felt this dizziness and this urge to vomit.
I didn't feel any nauseousness in my stomach; It was all in my head. It was this business of the head, a lot of vertigo. And so, I vomited a lot. That was a Friday. I remember the time sequence quite well; it was a Friday. We eventually called it and get better from your food poisoning.
The next day, I still had the dizziness and wasn't vomiting anymore, but I was still very dizzy. And I had developed quite a bad headache, a migraine, and I struggled to get anyone to bring me any sort of help or food. I reached out to quite a few of my friends and only one person, after a lot of searching, eventually brought me some food and Tylenol, because I thought that I had food poisoning and that I just had to wait it out.
I sat with this migraine and went to bed thinking everything was going to pass. And I remember that night very well. Sort of one of the last few things that I really remember, just lying there in my bed in pain, because it felt like my head was being held on…
Adam Johnstone 5:00
…like, against the corner of a sidewalk, just being kicked, right in the back of my head, right along my neck where my neck and my head meet. So right along my back hairline pretty much. And it just felt like I was being kicked repeatedly, over and over and over. I tried to sit with it.
And then, I remember at about 1 a.m., I realized that this probably isn't normal. The fact that it feels this bad means I should probably go to the emergency room or something.
So, I, again, reached out to friends and couldn't find anyone to take me to the urgent to urgent care or the emergency room, that is.
And eventually, one of my mom's friends happened to be up at 2:30 a.m.ish and agreed to pick me up and drive me to the emergency room, which I did.
I sat there for another six hours because emergency rooms are pretty slow sometimes. And eventually, I had a few doctors come in and out. They didn't really check any part of my body other than my head, because that's where all the pain was. It was the head.
They came in, and they said, “Oh, hey, do you have any swelling in your testicles”?
And that's when they told me that I had testicular cancer, which came as a shock. Not, not necessarily a shock, because I had this softball-sized testicle for so long. But definitely, not what I wanted to hear, of course. My mom was out of the country; she was on vacation. And she's the only family I have in the country.
Adam Johnstone 6:37
So, I called my best friend at the time, who never wakes up at 8 a.m. But he woke up at 8 a.m. I told him, and we sort of just sat there on the phone in disbelief. And then, I was way too exhausted to call anyone and what else, so I texted them, and no one really believed me.
They thought I was I was pulling their leg. Because it's crazy, you know, like, oh, that migraine that I had turned out to be from testicular cancer, you know, a lot of people don't want to think that's what happens to their friend.
Well, especially when you're young, you're so young at 19. And that's that unusual diagnosis to have cancer.
Yeah, exactly. And eventually, I got admitted, went through all the processes, like an MRI, CT scan. They did an ultrasound on my testicle, and it was so large that they thought they couldn't find my left testicle because they thought it was part of the cancerous testicle at first.
That's how sort of problematic it was. And then, I eventually got moved around. I got put on my pain meds. They determined that I had cancer in my testicle, my abdominal lymph nodes, my liver, both of my lungs, and in my brain.
Joyce Lofstrom 7:49
Yes, yes. Yeah, that spread over time. They were pondering and trying to figure out what to do.
No. Yep. And pretty much I don't know the details of my liver. I know that in my right lung, I just had a bunch of small tumors, that sort of speckled my lung, and my left lung had a grapefruit-sized tumor…
Adam Johnstone 8:13
…which is crazy to believe that that was in the side of me. And then my brain had quite a few, right there in the back of my head of where my hairline is. Then, a few sort of sprinkled across the rest of my brain, which is problematic, to say the least.
Yes, yes, I know, Max had that too.
So yeah, I remember. That was one of the things that we talked about a lot and struggled with because it's all the other parts of your body are scary to have it in. But when it's in your brain, it's really frightening.
So, what happened next? What did they deal with first? “They” being the doctors, they had identified all of your cancer locations.
Well, so they determined that brain surgery was probably the first thing that should happen, because that is what was causing these horrible head pains, you know, sort of that being-kicked-in-the-head feeling was from those tumors in the back of my head. And sort of a lot of fluid in my brain that wasn't moving around as it should have.
So, my intracranial pressure was rising, and around this point, I sort of forget everything that happened. I had friends come in and hang out with me a lot. And I don't even remember this last day, but I stopped breathing because of the intracranial pressure in my brain. It just, I just stopped breathing.
They had to drill a hole in my head to take out all that fluid and restore my consciousness. And like I said, I have no memory of any of this, but I know my friends were there, and it was frightening.
Yes, that would be very frightening.
Yeah, even like my tough-guy friends, definitely sort of lost it there from what they've told me.
Adam Johnstone 10:00
Yeah, so they drilled a hole in my head, and they decided that the brain surgery that they wanted to do in a couple of weeks couldn't wait any longer. And I went in for an emergency brain surgery,
Adam Johnstone 10:08
They cut out the tumors in the back of my head. I have a pretty large candy-cane-shaped scar on the back of my head from it. I don't really remember the next week or so; I was sleeping a lot, of course. I was stable, but I'm sure it was very frightening for everyone around me. And I mean, I was frightened. But I, I could hardly comprehend what was going on. I was on so many drugs…
Adam Johnstone 10:35
…And just in disbelief in pain.
So, after that, they planned on giving my first round of chemo, while I was still in the hospital recovering from my brain surgery.
This might be sort of a private detail. But I think it's important to note that they gave me a container for my sperm and said, “Hey, we're starting on chemotherapy. There's a chance that you won't be able to have kids after this. So, you should try to preserve something.”
But I had gotten a brain surgery a week ago, maybe two. I couldn't even hold a banana without falling asleep. So, I lost that chance to preserve any of my sperm.
Yeah, I think that's probably a common situation for men in dealing with testicular cancer. I know Max had the same thing. And he was in the same boat; he was unable to do it. It was so quick. And he had to do it that day, that minute. And yeah, it's um…
…I want to say it's not fair. And it isn't. But that's a lot to ask of any person.
Adam Johnstone 11:44
Yeah, it's a lot to ask for the person. And it's also, there's really not much that can be done about that, you know because our health has to come before our potential children in the future…because if we don't make it to that point, then there was no point.
So anyway, they started me on chemotherapy. And at this point, I could not walk; it was just impossible.
Adam Johnstone 12:09
They’d put me on shifting, the shifting slab-type things, I don't know what to call them, that would move at an angle to try to simulate walking for me, or at least standing up because my balance was gone. I had lost my sense of balance completely. So, I couldn't walk while I was on chemotherapy. And at this point, I still had my hair. They shaved half my hair to do my surgery, but the other half was still long and wild.
Adam Johnstone 12:34
Which is a, pretty funny sight now that I can look at it from a less emotional point of view. But I was very upset about it. And they moved me to physical therapy, so I could pretty much relearn how to walk, at least get my sense of balance back. I spent about a week in physical therapy. And it was definitely a very difficult time…
Adam Johnstone 13:00
…Because they took me through the physical parts. They took me through occupational therapy, speech therapy, and some of those I didn't really need, but you know, but they had to do it to make sure I was good on that.
But it was really hard being a 19-year-old around a bunch of much older people who are suffering and sort of going through the same thing as me, and I'm the young one.
So, I felt very weird. And I felt really depressed. And even though I had my friends and my mom there, I felt really alone. It was really hard to do.
Had they removed your testicle? You were just on chemo?
This was one surgery and out of five and one round of chemo and out of four.
Yeah. So, then I finished my other three rounds of chemo by around March. So. this is from January to, I think, mid-March, they finally took me off steroids at that point.
I was finally able to drive again. That's about three months of just no driving and steroids also did the typical things they do to someone's emotions. It was definitely very, a very rough and like roller coaster-esque patch of emotion for me. Obviously, because of cancer, your diagnosis, and treatment, but all of that with the medicine that I had to take every day. In April, they gave me an orchiectomy and removed my right testicle. Finally, definitely the easiest surgery out of the five, to say the least, very easy.
Adam Johnstone 14:37
Definitely very frightening to look down when I pee and just see this bloody gash. That was very upsetting and discomforting for me. And then after this, we had to tackle the lungs, which were not easy. Like I said, the right lung had a bunch of little peppered tumors, and the left one had a grapefruit-sized tumor.
Adam Johnstone 15:00
So, we started meeting with my future lung surgeon.
And at first, we weren't even sure if it was viable. We weren't even sure if they'd be able to remove enough of my lungs, while also keeping me alive.
So, for a while, it was sort of a question of, can we even do this operation? Or do we just have to keep you on surveillance until you eventually succumb to it?
Oh, my, I didn't know that. Adam. Gosh, yeah, it's a lot to deal with.
Yeah. And so, a lot of meetings back and forth. And eventually, there was a time of like, Oh, yeah, you will do it, but you might be on oxygen for the rest of your life. Or you might even end up on an iron lung.
I think this is, that was the first time since my, my very first run-in with cancer in the emergency room where I had to accept the fact that I might die.
And that nothing was in my control.
And it was rough, I was still not even 20. At this point, this was June 2014.
Adam Johnstone 16:07
Eventually, they decided, yeah, we're going to do one lung at a time. And we're just going to hope for the best.
So, I got my right lung surgery. And both lung surgeries were extremely painful because to do it, they have to spread apart your ribs from the side, to get into your lungs. When you wake up, you're not only in pain from surgery in general, but your ribs are so sore from what they had to do. My whole right side of my body was just was like in torturous pain. And I also had two tubes going into the side, right, sort of to the right of my belly button on my side of my abdomen.
Adam Johnstone 16:47
And of course, after a day or so, you are there a day or two, they start to encourage you to start sitting up walking, moving, And the pain was just excruciating.
Now, but they were able to get the tumors out of your lungs?
Right, they were able to remove everything. And then, that would, well, eventually, they did the left lung in which in the upper third was a grapefruit-sized tumor. And (it was) the same deal, same exact thing, a lot of pain. And after that, I was on oxygen. So, we had an oxygen machine in the house; we had portable oxygen for me.
Adam Johnstone 17:22
Whenever I had to go hang out with or whenever I wanted to hang out with friends, which of course, I wanted to do, to keep some semblance of normalcy in my life, I had to carry around a portable oxygen container.
Adam Johnstone 17:33
And, I mean, I look like, I felt like I looked like a freak with my barely returning hair. But my facial hair definitely came in faster than my normal hair, and just my portable oxygen. I would normally wear a beanie to make me feel better about my hair.
And I think the thing that made me feel the most self-conscious was right after my brain surgery. I think I weighed about 160 pounds, which obviously I wasn't eating. So, I was pretty skinny for a guy who's 5 feet 10 inches (tall).
And after chemotherapy, I came out, weighing about 210 pounds. I gained about 50 pounds over three months.
And why was that?
A lot of people associate chemo with just vomiting. And it's really a person-by-person basis. I had; I had the VIP treatment. I don't remember what that means in terms of that was the chemicals VIP. It didn't ever make me want to vomit. If anything, it made me I think it was mostly because I was on the steroids at the same time.
So, I was super hungry. And I would just eat and eat. And when you're on chemotherapy, I wasn't doing outpatient chemotherapy either. I came in on a Monday, and I left on a Sunday or a Monday. I was there 24/7 for a whole week. And that whole time, you're being pumped with fluids. So, I gained a lot of water weight and a lot of other weight.
By the time that I had my lung surgeries, I was walking around mostly bald, with scraggly facial hair, 50 pounds heavier, and with an oxygen machine, everywhere I went. I felt like an absolute freak. It was just very hard.
It had to be, I mean, just listening to you what you had to go through. It would be hard for anybody, especially someone so young. So, I admire you. You've really done a lot, Adam.
So yeah, thank you. And my doctor also was very hesitant. My lung surgeon was very hesitant to prescribe any pain medicine. And so, I remember when I was sitting around in my living room once, and I started coughing. A combination of the pain and the panic, I just couldn't stop coughing, and I could never catch my breath. So, we had to call an ambulance. That that was my one and only ambulance ride.
And I went back in and pretty much they determined that they didn't prescribe enough pain medicine to me.
So, all that could have been avoided but better to not risk it with opiates, I suppose. But that was definitely very frightening because I wasn't sure what was happening. But by the time I got to the hospital, I was pretty stable.
Finally, they needed to do my retroperitoneal lymph node dissection, the RPLND, which is definitely one of the more grotesque.
Yes, it is.
I'm sure a lot of people listening know about it or may have an idea of what it is, but they slice open your abdomen from the bottom of your rib cage down to around your waist. And they pretty much have to remove all of your organs there to get to your lymph nodes that are along your spine, since they obviously can't go in from the back.
Following that surgery, you have to well, actually, even before the surgery, it's so hard. Because you have to go a day without eating. You have to drink Go Lightly; which a lot of people know as the drink that you have to drink before a colonoscopy. It's the most disgusting, vile liquid on this planet.
Yes, I agree. I agree. I've had the colonoscopy. So, I know what you're talking about.
Yeah. And it's just, it's It was horrible. And you go into surgery at 6 a.m. And you have to get IVs.
Adam Johnstone 21:18
And your skin is like a desert. It's dry, and it's empty. So, getting those IVs was incredibly painful. Because the more water you have in your system, the less discomforting and painful they are. They went through with that surgery, and I woke up. The way that they get your whole digestive system sort of restarted. You can't even have food for a couple of days. You start on ice chips, and then, eventually water, and then eventually popsicles, and then broths, and then light solids. Then eventually, you will get back to your normal diet.
And so, the pain is horrible. They also gave me a central line for this, so they could administer medicine. Yeah, I mean, it was just pain, just lying there in pain, and you're tired, and you're hungry, and you're thirsty.
And you just sort have to sit with it. And I think after a few days, eventually I was feeling up for actual solid food. And I ate it, and I vomited it all up. And I pretty much the next week, I stayed in there just vomiting, everything I ate back up. It was just a pain, and I couldn't keep anything down.
I didn't see an end to it. It was definitely, I think, the most harrowing of my surgical experiences.
Yes, I know. And Max had the same kind of feeling about it. And I think it's as you described, Adam, it's the nature of that surgery when they cut through your abdominal muscles and move everything around.
It’s a very, what's the word for it? Invasive surgery?
It took a while to get better. So, that is number five, then that was your Was that your last surgery?
Yeah, that was my final surgery. And it's actually pretty important because about five days ago,
I believe on August 26th, was the day of my RPLND in 2014, the 26th or the 27th. And that, eventually after that, they did a checkup, and I had no traces of cancer.
So, I consider that August 26, or 27 is my remission anniversary. At this point, it's considered cured, because it's been over three or five years.
I just passed the six-year marker about a week ago.
Well, that's wonderful. Congrats. I just think that's, you know, listening to you what you've been through. So, I know I'm a cancer survivor, too. When you reach that five-year mark, it's a big deal. I mean, it's very good.
So, you got through it all. And so, then after that RPLND, what happened next? Just kind of back to school, or?
Yep, I took until December off. I sort of just sat there and worked on getting better and worked on figuring out what I want to do. So, when I moved back to Albuquerque, I wanted to go to do music.
And after all of this, I realized that I still really wanted to work in the sciences, specifically biology. So, I ended up going back to New Mexico Tech living in Socorro for a year.
And so, I was living in a tiny town about an hour south of Albuquerque. It's a college town, so most of the population has something to do with college. I had a few friends, and I was a cancer survivor living on my own learning for about a year there. Of course, I've had multiple scares, especially in that 2015-2016 period, because of some swelling sort of occurs on your remaining testicle.
Adam Johnstone 25:04
Some swelling occurs there. And it's frightening because at first, the first thing you think is “Oh, God, is this another tumor.?”
So, I had to go get that checked out. And more suddenly, yeah, this is just what happened. This is just swelling. I've had my checkups. And that's been pretty much my entire cancer journey.
Well, I really appreciate that you shared so much with us about that. It's a long journey.
And I think listening to you, I think probably going to your brain first was a good choice just to get rid of that. And then, you know, that's over, with and you can address the rest of it. But I'm not a medical person. I'm just reacting to what you've told me.
Adam Johnstone 25:56
So, right. I mean, with the pressure that the tumors are putting on my brain, it was definitely very scary. And if they didn't take care of that, first, I don't think I would be here today.
Joyce Lofstrom 26:06
Because Max, you know, he had everything gone, cancer-wise, except the spots in his brain.
Well, tell me now about your decision to be an Imerman Angel. What made you decide to do that?
Adam Johnstone 26:21
Well, so my mother is, she's very active in the testicular cancer community. She's always been connecting with people. And she eventually told me about the program. And I'm usually not a mentor type of person, I feel like. But I really after everything, I felt like I didn't want someone like me to go through it alone. So, I signed up for it. I wasn't sure what was going to happen when eventually in October, I got connected with Max. It was definitely a powerful moment for me.
Joyce Lofstrom 27:00
That's good. And I think that is a very good point to make from you. Because you have gone through this. And then, you were able to help someone else that was going down that same journey.
So how about now, six years later? You talked a little bit about your schooling. What are you doing now? Anything you want to share?
I've jumped back and forth a lot. Like I said, I did biology right after, and then, I didn't use it for two years. Then, I thought I wanted to do communications and writing. I gave that about a semester and realized that was not for me. And then I came back to biology, I realized that I wanted to give it a shot; I had some progress in my courses. I wanted to just finish it. I was about the same length through my biology and my music degrees at this point.
Adam Johnstone 27:55
So, I decided I wanted to try out biology again and get back into the sciences. At first, it started with this desire to give back, you know, a plan for medical school and working with humans to improve their living.
Adam Johnstone 28:16
So, in fall 2018. I started that, and here I am. This is the last semester of my biology undergraduate degree. I realized I want nothing to do with medicine. I don't think medicine, medical school is the pick for me at all.
I've been very interested in ecology and behavioral biology and neurobiology. So, I'm planning to go to grad school for one of those things, right now. One of my main thoughts is neuroethology, which is the neural basis of behavior in animals.
Adam Johnstone 28:53
And so, I'm, I'm on my last semester, my undergraduate, so that's what is coming next for me.
Wow, we'll have to have you back in a year; you can tell us what's happening. So that's a very fascinating field.
My last question is, you know, we've been through your journey with cancer and where you are now and lots ahead for your really exciting career path.
What advice do you have for any young man who might be listening that thinks he has testicular cancer? Or you know, has had it, but not really has had it. I mean, people who think they might have it? What would you tell them?
Well, first, if you have testicles, you should check them. Often. Even if you don't have any fears, you should check them regularly and understand you have to understand your biology, your anatomy, to understand when something is wrong. I think before you even worry, I think the first thing you need to do is make sure you're checking yourself. And if you notice any abnormalities, it doesn't always mean testicular cancer.
Adam Johnstone 30:00
But you need to go in and get it checked out. Don’t do what I did and wait for a year and some, because you'll go from a slight amount of testicular pain and back pain to a testicle the size of a softball. So, I think, it's really important to, if you have any inkling of fear, no matter what, you should go and get it checked out immediately.
And there's no such thing as playing it too safe when it comes to testicular cancer or any cancer.
If you have any fear, make sure you check yourself out and then go to a doctor and
Adam Johnstone 30:39
…press for questions. Because I had back pain, I'd gone to my primary care physician.
And he pretty much said, “Oh, back pain, just go to physical therapy. You're growing up, and you're in the marching band. So, you probably have back pains from that.”
Push for, push for understanding.
Because if I had just said, “Hey, my testicle is a bit larger than normal, or I feel a bump, then,
I would have potentially avoided a year of struggle and pain, and just had an orchiectomy and maybe an RPLND rather than five major surgeries and four exhausting rounds of chemotherapy.
Joyce Lofstrom 31:26
That's great advice. And you're right to talk to somebody and ask questions. I think that's a really important two prong-direction to take because the questions can often give you the answers that you’re looking for.
Adam Johnstone 31:43
Right, and if I can get on my soapbox for a brief moment…
No, please do. Please do.
I think that if you have someone who's been affected by testicular cancer, or any cancer, I think it's important to know that a lot of people aren't just afraid of the physical consequences.
They're afraid of the financial consequences because that's part of why I didn't go to a doctor. It was so scary to think that I might run into bills for something, even if it wasn't cancer, the bills for the just the checkup.
And if it was cancer, I remember, getting a six-figure bill for my first couple of weeks in the hospital. Luckily, insurance retroactively took care of it. But it's frightening to see a bill with six digits for brain surgery, some chemotherapy, one round of chemotherapy, and a week's hospital stay.
Adam Johnstone 32:35
I think it's important to fight to make sure that no one has to worry about that because I guess my experiences sort of radicalized me. I was very lucky to have health insurance that retroactively covered what I had and covered me throughout all of it.
But a lot of people aren't as lucky.
Adam Johnstone 32:56
And I think it’s important to fight for health insurance for everyone, or at least more, whatever your beliefs are. I'm a proponent of Medicare for All because I think it's essential. But even just making more accessible healthcare, I think, is something even if you're a caregiver or just an ordinary person who is worried, I think it's important to advocate, to fight, so that everyone has the right to be alive and survive through these things.
Joyce Lofstrom 33:25
I am with you on that, Adam – 100 percent. I agree Medicare for All, universal healthcare, is what we need. So, again, another topic we could come back to talk about sometime.
I really appreciate that you joined us today.
Thanks, so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website and it's at maxmalloryfoundation.com, where you can learn more about testicular cancer, donate and also, send your ideas for guests on the podcast. And for spelling, Mallory is m-a-l-l-o-r-y.
Please join me next time for Don't Give Up on Testicular Cancer.
Transcribed by https://otter.ai