Simplify Cancer

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:

Finding Hope Podcast

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.

Joe:                 Wow.

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…

Joe:                 IVF?

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.

Joe:                 Wow.

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?

Jim:                  Yes.

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.

Here is what is covered in this episode:

How To Divert Your Thoughts Away From Cancer Vlog

Here is what is covered in this episode:

How to Stay on Top of Life During Treatment Video 

Look, I know that supporting someone you love through cancer can really be the toughest job in the world.  Not only do you have to support them through it, but you somehow have to try to find a way to deal with all the craziness and the uncertainty yourself.  Today, we get to hear what it’s like to be a caregiver from Honore, who went on this extraordinary adventure of supporting her husband through cancer.  Here are some things that we cover today:

128 Days & Counting: Website and Blog

128 Days & Counting on Amazon

128 Days & Counting on Goodreads

Episode 015: When Your Loved One Has Cancer

Joe:                What was your life like before cancer?

Honore:            Life before cancer feels really simple now.  My husband and I, Tom, we were married three years.  We had been together just over six.  We were in our late 20s, establishing our careers and enjoying the opportunities of travel.  We were at that age where every weekend was a wedding or a bachelor party or a bachelorette party.  We were just in that time in our lives where we were constantly moving and really got to enjoy those first couple of years of marriage.  Things were great.  It came so abruptly that that time in our life just seems foreign now.

Joe:                 Absolutely.  How did you first find out that Tom had cancer?

Honore:            We were actually very fortunate.  Tom was having a weird cough and some pain in his chest.  He didn’t really think anything of it.  I remember him coming up the stairs that night and just making a face a little bit and pushing on his chest.  He said something just felt weird.   We thought, okay, a cold is coming or something like that.  It’s September, all the back-to-school stuff and we went to sleep that night and about five o’clock the next morning, I woke up and he was putting clothes on and he was getting ready.  He said he needed to go to the hospital.  Fast-forward an hour or so later, and he had an x-ray and they saw a shadow in the mediastinal, so in his chest.

From that, they sent him to a CT and there was a baseball-sized tumour sitting in the centre of his chest, essentially, in the mediastinal.  What was causing that chest pain for him was the fact that the tumour was touching his heart.  We were actually in a way very fortunate because it mimicked symptoms that you don’t mess around with.  You go into the ER when you’re having chest pain like that.

Where some people who had gotten this type of cancer in their abdomen and it takes longer to diagnose because you just think you’re having a food allergy or something like that.  We were very fortunate in a way that it was in his chest.  We got to the hospital a little bit 6:00am, by three o’clock that afternoon, we knew it was a late stage-three cancer.  His particular cancer was a non-seminoma germ cell tumour, which is a rare form of testicular cancer.

Joe:                 Yes, wow, it’s just such a shock, isn’t it, because you just never see it coming.  What was the first thing that went through your mind?

Honore:            That I would wake up.  It’s funny because naively, in a way I woke up out of a dead sleep to Tom saying, “We need to go to the hospital.” There’s an element of that that I honest to goodness thought I was in a dream.  I would wake up, it would be okay, I would wake up, this is just one of those really vivid dreams you have.  Unfortunately, not.  Once I accepted that reality in that day anyway, I think it took long to truly accept our reality, but knowing that I wasn’t in a dream, unfortunately, what you think of is every bad story you’ve ever heard about cancer and the financial impact it can have.

Are we going to be able to keep our home?  Can we figure out these treatments?  Is this a diagnosis that’s going to allow us to have a chance at the future beyond this?  Unfortunately, my head went to all of those pieces because there are so many unfortunate cases where you don’t have positive outcomes.  That’s all of a sudden, that movie reel plays in your head of all of those stories and circumstances and news articles and all of those things that you’ve read before.

Joe:                 That’s so true and my mind goes back to what you said about hoping to wake up from this dream.  It does that a while to properly sink in, doesn’t it?

Honore:            It does, you’re in shock.  You’re absolutely in shock.  Not only are you in shock, you have to make a ton of decisions very fast.  You don’t even get to sit for a minute with your own thoughts.  It’s… here are a bunch of facts, now here are all the decisions you need to make.  By the way, you might need to make them within the next 24 hours because we have to start treatment, or we have to get this doctor lined up.  I would argue there were some days where it still felt like a dream.

Joe:                 Yes, absolutely.  I really connected with your story, as well, because I remember when I was going through treatment, that I think my wife and my mum, they were probably under even more stress than I was.  I guess the way I look at it is, when you have cancer all the spotlight is on you, right?  You’re going through it, but at the same time, your partner has to be the rock that’s supporting you throughout all the craziness and uncertainty and through treatment.  You also have to maintain some semblance of normal life and do the things that you normally do.  What’s your experience been like as a caregiver?

Honore:            Yes, you nailed it.  It is hard because the spotlight is on that person.  You feel like you’re the puppeteer making everything happen around that person.  The day that he was diagnosed, and I talk about this quite a bit with people, is our roles changed.  We were still husband and wife, but we were also caregiver and patient.  With that comes a different dynamic.  When we were just husband and wife, I wouldn’t tell my husband, “You have to do this.” There were days where I had to say, “You’ve got to do this, you’ve got to take this.  We’ve got to do what the doctor is saying.” Your role shifts.

That’s hard because you want to keep your normal, but the reality is, you’re in different roles.  That normal is something that you are anchored to and you hold onto, but that’s not your day-to-day anymore.  That’s really tough.  It’s finding normal within that.  We found temporary normal, like when we were in the hospital, we would take a walk every night.  We took the same route and we’d make the same goofy faces and say hi to the same people.

You find these little rituals and these traditions in these terrible times because you’re clawing for any sense of normal and any sense of this can be happy, we can find happy moments in this, we can laugh, we can do that.  That was part of our normalcy.  Our normalcy was having fun and choosing to be positive, you lose so much of that that you try to find those moments.  I think another thing we did from a normalcy perspective and for Tom’s sake, all of his medications, I had an entire table of medication that he was on.

A chart that I found of what he needed when.  I put that in our office room in our house and I would shut the door and I would keep everything in there because I wanted everything else in the house to feel normal.  I didn’t want ten medication bottles on the bathroom counter and five in the kitchen, and have the stuff spread all over the house.  I wanted that normalcy to be when we were in our home.  Other than that, one room, we were still husband and wife, and this was still our home.  That helped keep us both – I could still be his rock and do that for him, and he could power through the hard days.

Joe:                 Yes, that’s such a fantastic advice you’ve got, this whole cancer room.  I heard that people even have roles for when to talk about cancer and when not to talk about cancer.  What’s your perspective there?

Honore:            I think for us, we didn’t necessarily have rules, but for us, I think I would have hated to put restrictions on it like that because there are moments where you feel like you need to communicate.  I will tell you, any couple that will go through this would likely tell you that communication is key.  To me, if we had put those restrictions on it, if he’s in a moment where he feels like he needs to tell me he’s having a really bad day, I don’t want him to hold back and think, “We’re not supposed to talk about that today.

Or I don’t want to upset her.” I get why people do it, for sure, but for us, I think it was really important to keep those open lines of communication and I think we always had that card to say, if we need to have a hard conversation, we’re going to have it when we’re both ready, whenever that is.

Joe:                 Yes, I completely agree with you.  I think it’s such a huge point to make that I think that there are points in particular during treatment, that I didn’t feel like saying how I really feel because I didn’t want to get my wife or my mom more worried and more worked up.  I got to thinking that it did more damage, really.  I think when I started to really open up about it and to be just more direct, and just honest about it, I think it just helped everyone because everyone was in on it, everyone knew exactly what was going on.

Honore:            Absolutely.  I remember, I finally had to say to my husband, and Tom was wonderful about communicating, but the same thing, the person going through the cancer already feels such tremendous guilt, they don’t want to add that onto the day.  I remember saying to him, “I am managing everything right now.  I’m happy to do it.” I’m balancing work, I’m balancing all of our appointments, our life, our finances, everything.  I can’t add mind-reader to the mix, you need to tell me how you’re feeling.  If you add that layer, I’m going to burn out, I can’t.  I need you to communicate with me what you need and be open about it, so I can adjust accordingly and make sure I can do that for you, but I can’t read your mind.

Joe:                 Yes, exactly.  Mind-reading is not on the job description.

Honore:            No, not in the official caregiver description for me anyway.

Joe:                 Exactly.  I think that comes down to also helping you to stay more positive.  It’s tough to deal with things because you’re always on edge, both of you, both yourself and your partner because you’re always waiting either for results or you’re waiting to see if the treatment has worked, or you’re waiting to hear from your specialist or your nurse.  What are some of the other things that have helped you to stay more positive through the role?

Honore:            For us, I think we’re both goofy people, we always joke who’s funnier in the relationship.  We’re just light-hearted in that way.  We always said laughter is the best medicine.  We really try to find those moments where we could laugh or be goofy.  For me, and part of the reason I started blogging about our experience, was one, to keep family informed, but actually writing became a huge stress reliver for me because there was so much going on in your head and in your mind.  Just to write it down.  For Tom, there’s a lot of memory loss almost during chemo, chemo-brain is real, very real.

In addition to the fact that your body is in shock and all of that.  He actually didn’t remember more than I even though how much he didn’t remember from that.  Being able to write that down and channel that in my stress and put it all down also served a dual-purpose because he read it back eventually.  He was like, “I didn’t even know that happened.”  I’m thinking, are you serious?  That was such a pivotal day.  To me, that seemed like a big deal.  It wasn’t that he obviously intentionally did it, it was just that wasn’t a memory that was retained for him, with all of the drugs and all of the stress of that.

For both of us, I will admit, as any caregiver, I resisted therapy.  In head, I thought, my husband was diagnosed in September and I did not bite the bullet until January.  I wish I had done that sooner.  I don’t know why.  I have nothing against therapy.  A dear person that I know, and love had said to me, “You break your arm, you go to the doctor.  You have a broken bone.  If your brain is not working, or your brain is struggling to comprehend the trauma and the stress of everything you’re going through, you go to a therapist.” I heard it like that and I’m thinking, duh… okay.

It was that ah-ha for me of, we need help, this was a lot, this was a ton of stress on me.  Like you mentioned earlier.  More importantly, how do I help Tom through his stress?  Again, as a caregiver, you never really turn that piece off.

Joe:                 Exactly.  I think that a lot of people, it doesn’t occur to them and it didn’t really occur to me at that time to go and see a psychologist or a psychiatrist or a counsellor, whatever.  It’s because you don’t really think about it like that because it’s cancer.  It’s supposed to be hard, but it’s really not.  I think the more that you can do for yourself, I think it’s a really fantastic thing.  What you’ve done is really go to see someone and find a way of dealing with it.

Honore:            Absolutely.  Tom, he saw a therapist, as well.  In his case, and I do advocate for this for cancer patients, especially, and I don’t know about your views on this.  For him, he said he would go, but he wanted to wait until he went through treatment because he wanted all of his energy and everything to get through treatment.  I think even at the time, he was still in shock.  I think finding the right time of when you get those interventions are really important.

To just do it because you think you need to do it, versus when you’re open and ready to have that conversation and really work through the trauma of it and how abrupt things happen and all of the changes in your life, I think it’s super important.

Joe:                 Yes, absolutely.  I just think it’s important to use every tool you can to help you deal with this experience.  For me, it was definitely like an online support group, just going to a forum for testicular cancer and being able to ask questions and to hear from real people, advice and support.  It just makes such a huge difference because no matter what sort of support you have, I think both as a cancer patient or as a caregiver, there are definitely times when you feel like you’re alone, when you feel lost and confused, right?

Honore:            Absolutely.  I think part of my issue, not issue, but something I wish I had realised earlier was, I found myself pulling away in those alone moments wanting to reach out to people, because I didn’t want them to have to take it on either.  I didn’t want to have to call my best friend again and be like, “I’m having a rough day.” In my mind, I’m like, am I jeopardising these friendships and relationships because my life is so chaotic?” I didn’t want that.  It’s hard because you’re right, you have those moments of loneliness and sadness, then you also almost don’t want to share it with anyone because our whole life was lonely and sad at the time, you know?  You don’t want relationships to change, and they do, it’s inevitable.

Joe:                 Yes, exactly.  I think sometimes you also want to hear stories from people who’ve been there, to know that there’s a light at the end of the tunnel, to know that other people have gone through it.  I think I want to really jump into what you talked about, people in your life, your friends, your family, how did they support you?  Did they really support you in the way that you wanted to be supported?

Honore:            We had hands down, we have the most wonderful family and friends.  We had so much support.  So much so that that’s actually part of the reason I started blogging, is I knew how many people would want to stay informed on what we were going through.  I knew that I couldn’t also add communicating with hundreds of people to my list of to-dos, so I figured if I could do that in one channel that would help.  It’s a great problem to have.  I will say, for me, one of the biggest lessons I learned is you have to be clear on what helps means.

What somebody might think is helpful, actually may or may not be for you on that day.  Part of that was on me and I wasn’t thinking.  There are elements for people.  There were definitely times where people were doing stuff where I knew it was more helpful for them to feel like they were helping us, than perhaps it was helpful to us.  That’s okay because people just feel helpless.  Especially close family and friends, they don’t know what to do to help.  I found that people being specific.  I had somebody text me and say, “Hey, is there anything I can do?” “No, we’re good.  That’s my answer.”

First, it’s somebody saying, “Hey, I’m at the grocery store, can I grab you anything?” For me, as the caregiver and for Tom, you feel such tremendous guilt already that people are doing things for you.  To know that they were already at the grocery store and that wasn’t an inconvenience for them, and they could actually bring us food, things like that.  Being specific in how people can help you, or how you can help somebody I think goes a super long way.  I also think it’s on that caregiver and patient to actually say, “Here is what is helpful for us.” Then figure out who can help you with those pieces of the puzzle, so you can get the support you need.

Joe:                 Yes, you make a fantastic point, that people should be more specific when they offer help because you don’t want favours, as well, you just want people to do something that they’re comfortable with doing.  How did you make it clear for people that these are the things that are actually going to be really meaningful for you, they’re really going to help you in a way that’s really right for you?

Honore:            Well, to be honest, it took me a minute to figure it out myself.  That’s hard, the knowing.  The reality is, what’s helpful on one day maybe isn’t helpful the next day.  It could be, I remember when Tom had his surgery, I thought I’d be able to bring him home and quickly run out to the grocery store and grab what we needed for a while because we would be in the hospital for a week, so it’s not something I could do ahead of time, the food would have all been spoiled.  I remember that was right towards the end.  This was not like my personality to ever, and I texted my sister in law and said, “Can you do me a favour and grab these five things from the grocery store and just toss them in the house?” She knew my garage code.

That’s not something I ever would have done before this happened.  I would have been like, hey, can you go run for my groceries for me?  Just asking and knowing some people would reach out and say, “I don’t know what I can do for you now, but here are the different things I can do.  If ever you need that, call me.” That’s super helpful.  I knew that I had family and friends around here who have small children.

I’m not calling them at eight o’clock at night to help with something because I know they have small kids and they may not be able to leave their home.  It’s always knowing what people are willing to help you with and then knowing when you can do that.  For me, still, it was very hard, I don’t think I did a perfect job at it at all.  Of course, I got good at it towards the end when we were really in the struggle.  I do wish I had gotten better at just asking for the help we needed and being very upfront about what would have been helpful.

Joe:                 Yes, it’s a learning experience you don’t want to have.

Honore:            Right, you don’t want anyone to feel like they have to do something.  You already feel guilty and when I did ask people, I felt, I hope that’s okay, I hope they’re not mad, I hope I didn’t inconvenience them.  It’s just my nature.  I feel bad about those types of things.  It’s hard, you don’t want to be in that situation.  You feel so vulnerable.

Joe:                 Yes, absolutely.  It’s hard to deal with check-ups because you’re worried that the cancer has come back.  How does it work for you now, like, for you and your husband?

Honore:            Those are really rough.  We are still on a three-month cadence because of how aggressive his cancer was.  It’s a roller-coaster.  The week leading up to it is not our strongest week when it comes to sleep.  It’s that old saying of there’s just an elephant in the room.  Going back to being open communicators and trying to deal with all of it, nobody wants to talk about it, nobody wants to be the one to say I’m worried.  You don’t want to cast any doubt, you want to stay positive, but you also have to prepare yourself.  I think in our case, for how abrupt his cancer came out, our nature now is to prepare for that ball to come out of left field that you aren’t expecting.  How do you manage that and stay positive?  It’s tough.  It’s super tough.  I would say we have a silly ritual.  There’s a greasy diner on the way to the hospital that we always have breakfast.

We get up early and go have breakfast before we see the oncologist and get the results, because that’s just our half an hour where we can take a deep breath and the day is actually here and we see our doctor and they’re just wonderful.  I think a big part of the challenges we have with that is, it’s really hard to go back into those spaces that have become so comfortable.  It’s hard to sit in the waiting room when you’ve got people from all different stages of their cancer battle.

I remember right in the heart of Tom’s treatment, we were sitting in the waiting room and somebody was coming out and the receptionist said, “Okay, we got to schedule you for six months’ out.” Tom turned to me and said, “I wonder if I’ll ever be able to make that appointment.” In our world, at that time, we were there every other day.  We were there for treatment, we were in hospital overnight.  Just being back in the environment, you feel sick to your stomach.  Everything just seems like you have to remind yourself that you’re not back in those days, you’re there for the check-up.

I think beyond those weeks leading up to those scans, I think some of the hard days that people don’t realise for folks that have had cancer and are only a couple of years out, is those are really hard weeks, but also what’s hard are those random colds, or that random pain, or the thing that happens on a Tuesday and you have to convince yourself that it’s just a headache and that he’s okay, and that all he needs to take is some Excedrin or something.

Those things are strangely hard because you immediately put your guard up because you don’t want to get caught off-guard again.  Those days are hard within those three-month periods for us, of going back to the doctor.

Joe:                 Yes, I’m so with you on that one.  Like, yes, it’s the little pain or ache and your mind, the first thing it jumps to, it’s cancer.  Whether it’s a headache.

Honore:            Yes, it’s back.

Joe:                 It’s back, yes, exactly.  I love the point you made about the little rituals.  I think we would do that in our hospital.  There’s this little café with a little garden.  We always go there for coffee there.  Yes, I really get you, you get used to all of these ways of doing things where you’re comfortable.  You want some certainty, right?  You want any bits of certainty that you can click to in this age of craziness and things that just come out of the left field.

Honore:            Yes, and we’re so used to – we’ve become a society that is so used to getting information so quickly and on-demand.  It’s sometimes strange to have to wait.  Just tell me.  Can’t I just look this up on an app or something?  There is this extra component, the way the hospitals operate and the waiting between days for appointments where he would scan and do bloodwork the day before and we’d come in.  It just doesn’t jive with how the world operates now, which is so fast-paced.  You’re also out of your element.  There’s got to be a way of getting this answer right now, come on.  Siri can tell me.

Joe:                 Yes, exactly.  Siri, is the cancer back?  One thing that’s always bothered me is that whenever you go to give your bloods or you’re going for a CT scan or x-ray, it bothers me that the person who decides your fate, the person that looks at the records and does the test, you never see them.  At least you can talk to your oncologist or you can talk to your urologist, whoever your specialist is.  The person who’s looking at the test results, you don’t know who that is.

Honore:            Exactly.  You’re hoping they’re having a good day.  There’s human error.  There’s an element of it and there’s something about seeing the person and knowing, okay, they were engaged in their looking and all that stuff.  You hate to doubt them because you know they’re doing their jobs.  There is an element of human error in all of those test results.  It’s natural, you wonder.

Joe:                 Yes, you wonder, what if I came to work with a hangover?

Honore:            Right, it happens.  On the morning of Tom’s surgery, our surgeon came in and he was wonderful.  I said, it’s awkward and I’m trying to lighten the mood, I said, “Are you feeling good?  What do you do?  Do you stretch out in the morning of surgery?  I don’t know.” He says, “Yes, I got up and ran at four o’clock this morning.” I’m thinking to myself, why weren’t you sleeping?  Go back to sleep.  Why were you up?  You know you’re doing surgery on my husband today, right?  Yes, you hope they’re having a good day.

Joe:                 Yes, absolutely.  You know what?  For me, cancer has really just changed my world completely.  It’s changed the way I look at things, my priority, the way I live my life.  Did you go through a similar experience?

Honore:            Absolutely.  I think people sometimes don’t realise it happens both for the patient and the caregiver.  I think there also becomes this element of the pressure to dramatically change your life when something like this happens.  The reality is, my husband had to go back to his job, I always joke, it’s not like we were going to sell everything and go buy a cigar shop on the beach the day after.  You have to recover.  You have to get through the trauma.  You have to financially recover.  You have to feel confident that it’s all gone and it’s not going to come back, and you have to get through those scans.

I would say absolutely, though, we make decisions differently.  Before cancer, for the most part, you can’t predict the future, I knew that if I did X, Y would happen.  We have X amount of dollars saved, we can afford this, we can go on this trip, we can do this.  There’s an element where your future feels less predictable because there’s always that little voice in your head saying, “Yes, but… Yes, but…” We make decisions differently perhaps that we may have not taken that chance on something, or we’re going to take that risk that we wouldn’t have otherwise taken.

Or we say, to heck with it, we’re going to drive eight hours to spent four hours with somebody and turn around and drive back.  You know what’s important, your priorities change.  The things you do and who you spend time with and how you spend your money absolutely.  I do think that probably for us, especially, continues to happen more over time.  I always say, I’m sure there are decisions that we didn’t even think we had to make yet that we will make differently because of everything that’s happened.

Joe:                 What about your book, did that help at all, as well?

Honore:            Absolutely.  The book, for me, was really hard.  I was writing that.  Tom and I going through it, for me, to your previous question there, Tom had this whole pressure on what did he want to do with his life now?  Is this the career he wants?  Same with me.  I remember, I worked throughout all this, but I remember thinking to myself, and I’m a very career-driven person.  Is this what I want to do?  Does this matter?  There are days you’re sitting there and you’re going, everything that’s important to me is outside of these four walls.  I care about my career, I care about doing a good job, but the things that matter most are there.

You have that element.  For me, the book originally started from my blog.  The blog kept increasing and the link kept getting shared.  By the end, I was actually getting quite a few hits per week.  That triggered a response from me.  There’s not a resource like this out there.  There’s not something from the caregiver’s perspective.  I was looking for it.   I was looking for it when he got diagnosed.  Somebody tell me, how do we get through this?  What do I do?  How do I support him?  For me, I saw that the world needed this.  I felt strongly that I wanted to put this out there.  To your earlier point, the book is very raw.  I’m brutally honest, I don’t sugar-coat it.  I felt that was a disservice to anyone that would be going through this.  For me, that was a tough decision to make, and changed my priorities in the sense that, do I want to put this raw personal story about this out there about our cancer experience?

About our family?  These are things that you don’t usually walk around and have cocktail conversations in a difficult setting.  We really put ourselves out there.  For me, you go through something like this and you realise that, if you don’t take this and if you don’t help the next person or do something as a result of it, there’s an element that you’ve missed an opportunity.  I think there’s a real gift in being able to get through these and give back.

Joe:                 Yes, absolutely.  That’s so fantastic because I think it’s definitely something that can help every cancer care giver out there, just to get practical advice on what to do.  Also, knowing that you’re not alone, you’re not the only person going through it.  There’s hopefully a light at the end of the tunnel.  This new normal that everyone talks about.

Also, I think it’s important to read for cancer patients, as well, to know what it’s like for the caregiver, for someone who sticks through it with you, who even has slightly different challenges to what you’re going through, so that you can really appreciate that and keep those communication channels open.  So, that everyone is really on the same page.  Right?

Honore:            Absolutely.  I think what’s been interesting is the book’s been out for about a year.  Of course, in my head, this is the logical audience of people, like you mentioned, of people who have cancer, so they have a better understanding of the people that support them, family and friend who are trying to support them going through a cancer diagnosis.  What’s been so interesting is there’s been this whole other group of readers that have said, it’s a love story.  The story about hope.

This intentionally was written not just about cancer, I don’t want cancer to always dominate the conversation because for so long it felt like that was the only narrative we had.  For me, to incorporate stories of our life before.  I mentioned in the book about goofy stories that happened to us before cancer.  I love that was one of the first questions you asked is, what was it like before cancer?  There’s a reminder to me that in a strange way, life finds a way of preparing us, even if we don’t know that at the time.  I was very deliberate in making sure that while this is a story about our experience of cancer and being a caregiver, there’s so much more to the story than just the cancer, because there’s so much more to anybody going through cancer, or the caregivers.

It can feel like it’s dominating everything about you, but it’s just a small piece of you and you will regain that composure and that reality back.  It sometimes feels like it’s going to take a while, but you can do it.  That’s been really awesome for me to know that the story can resonate with people, even if they’re not in the thick of this.

Joe:                 Yes, that’s so true because you are so much more than this cancer.  How would someone go about finding your book?

Honore:            Yes, so the book is available on Kindle.  Then on our website which is: 128daysandcounting.com.  Also, on Amazon.  His cancer from diagnosis until the day we found out he was cancer free was 128 days.  I intentionally put the “and counting” once I started writing the book because it became very quickly clear to me that the cancer-free was not the finish line, it was actually the starting point.

Tom went through a really rough battle with depression and PTSD and puling all of those pieces back together, because it’s a lot to undertake.  I always say that the and counting is the most important part because to rebuild and get your life back.  Going back to what I said, it’s getting back to our regular roles of husband and wife.  That’s a real transition.  That’s how the name came about and that’s where you can find us.

Joe:                 Fantastic.  Thank you so much for your time.  Thank you so much for sharing your story.

Honore:            Thank you so much.  It was so great to talk to you.

In short:

Emotional Resilience During Cancer Treatment