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I know that cancer changes the way you look at things, the way you think about the future, even the way you see yourself, but even when things are tough, there is still the light at the end of the tunnel, you can make it through and have the life that you want despite cancer! And that’s what I’m talking about today with my new friend, Jim Adams. Here are some things that we cover today:
- Reflecting on the cancer experience 28 years later
- Dealing with the ups and downs of cancer treatment
- The transformational role of the support group
- Getting the most out of life after cancer
- and much, much more!
Finding Hope podcast on iTunes
Episode 047: Cancer Caregiver’s Journey
Joe: Jim, I’m super excited to be talking to you because I found your podcast and it just really speaks to me because is where I’m from. Jim, I really want to first of all, start with life, with your life before cancer. Tell me, was that like?
Jim: Let’s see, what was it like? Well, when I was diagnosed, it was back in 1991, and I had a real rare form of testicular cancer. It was called non-seminoma germ cell testicular cancer. It wasn’t in my testes, it was actually a tumour growing from the back of my abdomen. The way it’s been explained to me is, when you’re in the first trimester, this was called the germ cell that travels down your spine and one deposits in each teste. Well, for some reason, one didn’t make it all the way down and it didn’t deposit in one of my testes and it, for some reason, at 25, it just started growing from the back of my abdomen.
Unlike a lot of other people who are not feeling sick, I ended up losing weight, I got misdiagnosed a number of times. I had one doctor tell me that he thought I had chlamydia and I needed to share it with my girlfriend at the time, which was crazy because I didn’t have chlamydia. At one point, I could actually feel the tumour in my abdomen. I could actually push into my stomach and I could feel there’s something in there, something’s not right. Went into the emergency room and they started doing testing and checked me in. They did test after test after test, biopsies, they did colonoscopy, they did down your throat. I forget what that’s called. They couldn’t figure out what it was, so they ended up doing exploratory surgery. Then the way it’s described is this tumour has what’s almost like a yoke sack on it.
Once they opened me up, they were able to figure out that it was germ cell. The funny thing is, the doctor came walking and he said, “We could have done a pregnancy test” because my kind of cancer, it will be positive on a pregnancy test. He said, “If we had just given you a pregnancy test, we wouldn’t have had to have exploratory surgery.” Yes, so they stapled me up and started me on chemotherapy right away. At the time, I had complete intestinal blockage, too, so nothing was coming out.
They started me on chemotherapy, and I had five rounds of chemo. They always told me it would be chemotherapy and at the end there would be another surgery. I had five rounds of chemotherapy and then at the end, I had another surgery, which even to this day, I on occasion go see that doctor and he’s only done one or two, like what he did with me. The surgery started at 6:30 in the morning and didn’t finish until 7:00 o’clock at night. They said the doctor looked worse than I did.
Joe: Wow. That’s rough, Jim. That’s crazy.
Jim: Yes, it was a pretty rough beginning, in the sense of with chemotherapy, it makes you feel like crap. Having had an abdominal surgery and throwing up was no easy task. It was a painful task. At that point, we had the surgery, the surgery there were eight or nine doctors in there when I had it because the tumour, it was bi-lobal, so there were two tumours the size of melons. They were wrapped around my aorta sitting on one of the kidneys, so I was at risk for losing a kidney. I had to have a kidney specialist, I had to have a heart doctor.
I still remember going in there and seeing all of these doctors. Of course, they had me on happy juice. I’m sure you’ve had that happy juice, or whatever that medication is, so I’m not so nervous. With the surgery, they were able to remove the tumour and it was really successful. That surgery was probably more successful than the exploratory. They were able to get the whole tumour. When they dissected the tumour, though, they did find some more active cancer. At that point, the doctors in Atlanta wanted me to have another round of chemo, but at that time, I was having severe numbness in my hands and feet. Potentially, another round would have put me in a wheelchair. We found that there’s, for most types of cancer, and especially for testicular, there are doctors who do research.
We found the foremost doctor in Indianapolis, so we drove to him, or to meet with him. She shared not to have any more chemo. I’m so toxic as it is, that I don’t need it. That’s how it ended back then. Then it was just a waiting game. I’m sure you went through it too, you know, every other week, testing, scans, and blood tests, then it became once a month, then every other month, then every three months, then every six months. Then five years out, they told me I didn’t need to come back.
I would come back typically every other year for another ten/fifteen years. Now, I haven’t been back to the oncologist for about two and a half years, but every once in a while, I’ll go back and get the bloodwork, just to keep myself not nervous or not thinking about it. I think in some of your podcasts, it’s mentioned whenever you have an ache or a pain, I’ll sometimes jump to conclusions, “God, it’s coming back. What’s going on?” It’s been… it was 1991, so 28 years since.
Jim: Yes, since I went through that.
Joe: That’s an amazing journey you’ve had. Do you remember, I want to just go back for a second because you had such a full-on experience, but do you remember what it was like, what was going through your head? They’ve opened you up and now they’re telling you you’ve got cancer, what was that moment like?
Jim: Well, it just brought everything to a stand-still. When I was diagnosed, there was a special lady at the hospital that I was at. He name was Betty Castellani. While I was in the hospital, she came to visit. She ran the support group, so she invited me down. Actually, invited the whole support group to visit me in the hospital room. They all came in and sat down and shared their stories. That was pretty quickly, so it made a big difference because hearing the stories of other people and seeing that they were doing well, and that they were healthy.
That’s a support group I’ve been involved in since the beginning, some of the same people I’ve been interviewing on my podcast. There was a lot of fear. I just lived in the moment, though. I remember Betty sharing with me that she thought I was doing really well, because I was able to stay in the moment, not worry too much about my future, or would I be able to have kids, would I not be able to have kids? When I was going through the chemotherapy, the doctor came in and wanted me to give a sample to be able to put some sperm away.
There was no way I could do that at that time, not after having abdominal surgery. Then we actually had some hope and we thought that I could have kids, then we found out I couldn’t because of those special tests I had. They did a radioactive test. We actually went through five rounds of…
Jim: Yes, IVF. Then at the end, they did the tests and it determined that my sperm wasn’t healthy. It had been impacted from the chemotherapy. We do have a little – well, he’s not little anymore, he’s 15, but we adopted. He’s 15. He keeps us busy.
Joe: That’s so great to hear that.
Jim: Yes, so adoption has been wonderful. When we figured out, well, we found out my wife had issues, too. At that point, it would be donor egg, donor sperm, so we decided to adopt and that’s worked out really well. I’ll get back to what you asked. At that moment, it was a lot of fear, a lot of what’s going on? It was just a tough time to go through.
Joe: Yes, absolutely. I think you’re talking about your support group and I’ve heard about that on some of your podcasts, as well. I think that’s so incredibly powerful, like you mentioned, just having people there who have been through it, who know what it’s like and looking at them going, “I can be that way.” That’s so powerful, isn’t it?
Jim: Yes. The group still gets together, they meet every other Monday night. There’s a 100 people in it. Yes, we would talk about life and them all, actually, the woman I was talking about Betty Castellani actually married my wife and I and baptised my wife and son.
Jim: We would get together. We would have fun trips together. We would probably get together four or five times a year for special events. Christmas parties or traveling or trips and things like that. The support group made a big difference. It was about living and enjoying life and not fearing what’s coming or looking back in the past. It was a lot of help around those things. That being in the moment, not trying to think about what the future would bring. Now that I’ve been out of it so many years, being self-employed, I get my own health insurance and those kinds of things, which, in the U.S. is kind of crazy these days, but I’ve been self-employed since 2002. It’s worked out pretty well. That was one of my fears at first, would I ever be able to work on my own? Having gone through cancer, you know? Would I be required to work some place where I could get coverage or insurance? Went off on a tangent a little bit.
Joe: No, that’s great. That’s so interesting. I’m really happy to hear that you had such an amazing support through this support group. People that you met face-to-face. What was it like with your family, with your friends, with people in your life? Did they support you and did they support you in the way you wanted to be supported?
Jim: Yes, they did. My dad, I probably had to tell him to slow down a little bit. Probably for the first 20 days, I was in the hospital for around 20 days. He was there with me. Every day there were times that I had to say, leave me alone or don’t ask me questions. We would end up watching sports, which would make it easier, because he wouldn’t be focused on me or asking questions. Yes, he was helpful. I had some friends who came and visited me when I was in the hospital and that was neat.
A lot of times, they would come, the doctor who did the surgeries, that last surgery was quite young at the time, so he’d be sitting in the room and they wouldn’t even know he’s the doctor. He’d be sitting in there with a polo and he’d be hanging out. Yes, I had a lot of support with losing my hair and everything else. There were aspects where I didn’t run into a whole lot of issues where friends would avoid me, but I would get together and go out with friends at different times.
I even had some weird things when I was bald, I remember a woman putting her hand up over my head when it was bald, wanting to feel it and stuff. Even had some funny humour, I remember one time, I have a lot of hair, you probably can’t tell, but I’ve got a lot of hair on my body. I was sitting getting my chemotherapy and I said, I’ll never get bald. I’m sitting there bald as anything and started laughing. I also had a lot of good nurses and a lot of – I got a lot of help.
I think we were lucky at that time, the medical centre in Atlanta was considered one of the best places to go through what I went through. My family gave me a lot of support, my friends gave me a fair amount of support. Actually, at the time, I was working on my master’s degree, so I had to cancel all of my classes. They were really supportive, too. Then I was able to just pick them all back up the next semester and finish my studies. It was like the worst of times and the best of times in some ways, because it did change my whole focus. It’s not all about money, it’s not all about things. It really is about relationships and being with people and being in these kinds of support groups.
Joe: Yes, exactly. Good on you, Jim. I love how you said that you were being in the moment. You know, not thinking about the future, too much. Is that something you had to work on or did that come naturally to you?
Jim: I think with Betty who ran the support group, she worked with me a lot. She came back every day and she’d have me read specific books and talk a lot. I’m a little bit of an introvert, so she worked on that day-in and day-out. I think being in the moment has always been easier for me than some people. I was okay with sitting there watching movies or watching old shows, like Gilligan’s Island, or whatever it might be. I was able to do that. Her being there and helping me through it, I think it made a big difference.
Then the other people in the support group. I constantly had people. I actually had to tell people to give me a break. The nurses suggested putting something on the door to let people know, I need a break for two or three hours, just to be left alone, so I could rest. The other thing, I wasn’t always a good patient. They would tell me not to get out of bed and sure, I didn’t want someone coming in to help me to use the restroom. Somehow, they must have known I’d get out of bed, because I’d be in the restroom.
Sure enough, the nurse would show up, “What are you doing?” Yes, they told me that I wouldn’t be walking that quickly I think they had me up and walking after both surgeries the next day. They said I’d be lucky to be walking a half a mile within a couple of weeks. I think within three of four days, I was walking a half mile. Going in circles around the floor. Just trying to stay busy and trying to get out of there as quickly as I could. I think getting out of the hospital was key. The chemotherapy was tough.
I remember a couple of instances, I don’t know if you had chemo or if you had radiation, but I had a couple of instances where, wow, I’m feeling a lot better, I think I’ll go get something to get. I love pancakes, so I’d go get pancakes. I was in the restaurant, had about ten or twelve bites. I was like, the nausea just hit me. I had to bolt out of the restaurant and take care of business. Had a couple of instances like that. the chemotherapy was pretty rough.
Joe: Yes, exactly. I think I went through that experience, as well. Just pushing yourself a little too much. You get a little overconfident and for me, it was also I remember going for a walk, and I was on my third round or something. I was like, I’m feeling pretty good. I’ll go for this walk in this little garden around the hospital. I remember just feeling so whacked out. I was just going; how do I make it back? Yes, I think those moment, yes, or just having people over, like you mentioned. Where I would get really tired by the time it would be 7:00pm or 8:00pm and not be having someone over and I’d be really not feeling like talking to them. I just really feel like having some rest. I think it’s so important not to push yourself too much in terms of your energy levels, right, just taking it easy.
Jim: Yes, without a doubt.
Joe: One thing you mentioned, cancer really changed the way you look at life. It changed your priorities, things that are important to you, things you really care about. Can you talk about that?
Jim: Yes, at the time, I was real focused on making more money and working, almost working too much. It changed me in the sense that you realise that the relationships are more important, time with others. I’ve actually, since I’ve gone to work for myself, I typically will work six months with a contract, and I’ll take some time off and work less. Finding time for family, for friends, going on vacations, even if it’s just going to the beach or up to the mountains. Just trying to really slow down and not be in a rush and not always be thinking about what’s going to happen in the future, or if I’ll get sick in the future.
Just living for the moment. Realising how precious those moments are. Just trying to make better decisions, make better choices. Do what I want to do, but not the other things I don’t want to do or take the jobs I don’t want to take. Of course, that’s more difficult than it sounds. I guess small changes over time. Trying to stay focused. I’m kind of rambling a little bit.
It being so many years, I think I was better at it earlier on. The first ten or fifteen years after the cancer, I was more involved in the support group, then I lost track in the last two or three years. I’m trying to get more involved and want to get back to some of those things I was learning before. That’s about it. I don’t know if I really answering your question?
Joe: Yes, absolutely. Now that you look back on it, because you’re in a great position, all of this stuff is behind you and you’re living your life the way you want to live your life, has your perspective on things and your experience, has that changed over time?
Jim: Yes. I think it’s changed quite a bit. Recently, it’s getting back into a healthier spiritual environment and realising it’s not religion and spirituality, they’re really supposed to be the same thing. Then, also, bringing in science with spirituality and religion. I’m a real fan of Richard Roar. I don’t know if you’ve read any of his stuff or listened to any of his stuff. There’s been a lot of talk about how spirituality or religion are coming together with science. Understanding that it’s those spaces that we can’t understand, either when we go really small, like in microbiology, or go really large when we’re looking at the cosmos, that there’s so much more there that we don’t understand.
Now, science is giving new hope to things that we didn’t have a whole lot of hope with before. One that I talk about on my side that I also like to read, and I like to watch, his stuff is Bruce Lipton with his biology of belief. I don’t know if you’ve looked at any of those, but he does a lot of talks on the relationship of how we feel and who we are, and how we interact with our environment is so key to our health. He actually talks about, too, that there is something with cancer with relation to us being disconnected from spirituality, being disconnected from our environment and relationships that can make a difference in both getting cancer and then also recovery from it.
I feel early on, I was just going along and then now, in the last four or five years, digging deeper into stuff like meditation and spirituality. Those things have brought me back to wanting to help people who have been diagnosed with cancer recently. I’ve also noticed so many more people being diagnosed. I don’t know what it’s like in Australia, but it seems like every day, I hear of someone else being diagnosed with cancer. I want to help others and help them to deal with it and understand that there’s a lot of hope. There’s a huge chance. In my cancer support group, I’ve seen people who have been given very small chances of survival who have done very well.
I’ve seen the opposite. I’ve seen people who have cancers that are very curable, that pass away after a year or two. The only thing that I’ve noticed with those individuals is how they’re taking care of themselves, how are they doing things, like spirituality, and meditation. Are they in good relationships? Are they communicating with others? It really does make a big difference.
Joe: Wow, that’s such a great point you make. Also, I just want to pick up on that you brought up the word hope. That’s obviously part of the name of your podcast. Can you talk about how did that come about and why is that important to you and the title, as well?
Jim: In the cancer support group I was apart of, or I’m still apart of, every year we would do a fundraiser, it was called the Hope Tree. Then we would also, in our group, talk about how hope was so critical to your success or to your survival. Those teachings from Betty many years ago and then getting together with some of my other cancer support people. Realising a lot of them, at the time when I was going through it, I was 25, but a lot of them were in their 40s and 50s. Now, they’re in their 70s and some even approaching 80. I realised my time to do these interviews with them was limited.
I wanted to share their stories with others, then it grew from that. Then I decided to look a little deeper about what can make a difference, what can give people hope, to realise it’s so much more than just dealing with the cancer. Your ability to survive the cancer relates not just to your treatment, but also having faith in your treatment. It’s a combination of both. Hearing other stories and realising, wow, this other person who’s had four or five, any number of years of survival with cancer is now living beyond cancer. Actually, living an even happier life than before cancer.
A lot of the people in my cancer support group, they made significant changes in their lives. I was only 25, but several of the other people, they ended marriages that were unhealthy, they changed careers. One family, who became really close to another family in the family support group, well, the father actually passed away. This other family actually adopted his children. They became adoptive grandparents. More a title than by law, but they’ve been involved with the little girl, who’s not a little girl anymore, she’s in her mid-20s. That’s the other thing that’s amazing is, I remember people bring their kids to these cancer support meetings.
The kids were three/four/five years old. Now, hearing the stories, wow, one body is actually in Germany, 28. It’s amazing, that what we’ve gone through. I feel like if there were supports groups like that everywhere, the survival rate of cancer would be going through the roof. Also, I want to find a way to wake people up at a younger age, too. I think if we live healthier lives. It’s important what we eat, it’s important having relationships. All these different things. It can make a difference, one, not getting cancer in the first place, and then also recovery quicker from cancer. Also, never getting a recurrence. That’s where the finding hope, if you have hope, then I feel like things can grow out of that hope. It can get you up in the morning and keep you from getting down and depressed or in the blues.
Joe: Yes, that’s fantastic, Jim. I think that’s really powerful, talking about finding hope and believing in your treatment, your specialist, your medical team, but also finding the right support. Whether that’s the support from a support group, whether that’s in-person or online, or maybe that’s also just connecting with the people already in your life. Also, making changes. I’m so with you, that sometimes you just need to make changes and things take on a different significance. I love how you said that really sometimes as you move on beyond cancer, that sometimes you look at life and it’s better than it ever was, right?
Joe: That’s such a key thing to really move along with your life and to see people like that, and to hear those stories. That’s what it’s about, connecting that up and thinking, “Yes, I want to be like that, I can make it through.”
Jim: Yes, exactly.
Joe: Well, Jim, thanks so much for your time and for your perspective. I really love hearing you. I’m looking forward to more of your podcasts. I hope there’s going to be so many more people tuning in and listening to Finding Hope.
Jim: Well, thank you, Joe. I appreciate it.