|Posted on 27 May, 2020 at 9:45|
For all the resources and links to helpful information referenced in today's episode, please scroll down to the bottom of this interview transcript. Thank you!
Jim Foster: Welcome to the show, my friends and teammates. If you’re joining us for the first time, we’re so grateful to have you here with us today. We refer to ourselves as “Team Journey,”: because we are not alone. We’re a part of a team, and we are all here to share the cancer journey together. So let’s get started. I’m so exited to introduce our guest today, my wife, Suzanne Foster. Suzanne, are you ready to share the journey?
Suzanne Foster: Yes I am.
JF: Suzanne was the primary caregiver for me when I was going my second journey, with Hodgkin lymphoma cancer. Fortunately I survived and we are very happy about our health, and sharing our lives together. Suzanne lives in Golden, Colorado and enjoys being a mom to our wonderful daughter, Jessi. Keeping physically fit, riding her horse named “Cowboy,” and spending her time with her mom and sister, who live nearby. She currently works as a paralegal at Jefferson County and I hope we can all learn a great deal from what she has to share with us today. Please join me in welcoming Suzanne to the show. Welcome to the show, my dear.
SF: Thank you.
JF: Well, I have given a brief introduction of you, Suzanne. Before we get into our cancer caregiver journey, please take a moment to tell us where you are from, and what your life was like before prior to becoming a cancer caregiver for me.
SF: Well, I was one of the few Colorado natives left. I was born here, lived in New Mexico for six years, then moved back here, attended junior high and high school in Colorado and from there on have done a lot of different things with my life. I met Jim in 1998, we got married, I’ve been a mom and worked a full time job, do a lot of things outside and just have an active life.
JF: What happened in my life to make you think that for a second time, something was physically wrong with me?
SF: I remember meeting you in 1998, and you were well on your way of being cured from your first bout with cancer and doing well. We got married in 1999. I became pregnant in January 2002 and your were short a few weeks of five years remission, and I want to say in March, I believe you felt a lump in your neck again. You’re always very conscientious about checking your lymph nodes and know where to look for those things. I remember thinking, Oh My Goodness. It was pretty scary.
JF: Well, it was pretty scary, and that lump in my neck led to a biopsy, which came back positive and they came back and did a PET scan and ultimately I was diagnosed once again with Hodgkin lymphoma, which was just shy of five years remission. It was tough for us, I remember that, you being pregnant, there was a lot going on. So what was your reaction to that?
SF: I vividly remember the day that it happened. I was at work and I was thinking there was no way this could be happening. There was just this weird lump, and I got a phone call at my desk and you told me that it had come back. And there were a lot of things that ran through my mind. It’s amazing what you’re thinking. Am I going to be a single mother? How can I think that way, I have got to be optimistic, but the worst case scenarios run through your mind initially and you have to somehow work through it and pull the positive out and think about how you are going to get through it. I was pretty much in shock, and it took a while to digest the news that I had heard.
JF: We both had a lot to digest that night and in the days that followed. At what point in the process did you realize you were about to become my personal caregiver, and did you think that was going to entail?
SF: We had meetings to go to, classes to go to, and they talked about food prep and certain things you would have to do for someone having to go through a stem cell transplant, and I don’t think it hit what my caregiver capacity would be until the visiting nurse came by after work and she put down a lot of instructions that completely baffled and bewildered me about how much work it was going to be and I remember thinking at one point I am just going to ask the doctors to put him in the hospital for this whole thing. It was very involved, but I managed it and it worked out. At first it’s overwhelming and you think there’s just no way, but you can do it with the help of family and friends, and the initial hands-on caregiving I did by myself and it was definitely an experience.
JF: And thanks a lot. I owe a lot of my life to you for that. Tell me this. Had you ever been a caregiver for anyone else who had cancer or any other major illness, and if so, what was that like?
SF: No, I had not, and I guess I consider that fortunate. The family that I come from, everybody’s been healthy and nobody was in a position in which I had to be a caregiver, so it was definitely an experience, and now I have that knowledge and that compassion when someone’s sick. There’s a lot involved and you get through it, you definitely do.
JF: We were also fortunate in that we lived in the same town where I was getting treatment. It was 20-25 minutes back and forth to the hospital. A lot of people have to travel a long way or relocate and so forth. It’s a lot of work getting a patient to and from appointments. In my case, after a while I became too ill to drive myself to and from appointments, and you were a big part of helping with that. What was that like?
SF: I think a big part of that is being organized because your mind is going in every imaginable direction; but if you can keep a strategic plan in terms of what treatments you have given the patient and how they’ve reacted and the questions you have for the doctor, and making it to the appointments and getting home, if you can get some rest after you get home, that’s a huge thing. One thing you need to understand is that the medical field has put a lot on family members and that’s to avoid extra insurance and such, and you kind of become responsible to make sure everything gets done. You do it because you love them and you want them to get well.
JF: Being a caregiver is a very vital role to a cancer patient’s success. I am very grateful that you were my primary caregiver the second time and my parents the first time. I know there are people out there who don’t have a primary caregiver and I just feel for them. If you are a caregiver, don’t be afraid to say to a friend or co-worker, “I need help,” someone to keep me organized, like a personal assistant, because there is so much work, so much information that goes into it. Even getting someone to drive to appointments when you are stressed out and that sort of thing. One thing I would like to ask is did you family or friends to help you in the caregiver role?
SF: Yes, I did, and it’s amazing how many people want to stand up and help. When we were going through the food preparation classes, we had my dad, my stepmother, their friends, people were just showing up to find out what they needed to do to help us with meals. But I found out with Jim’s stem cell process that he wasn’t hungry, so all that extra food prep really didn’t matter that much. That said, my mother-in-law was always bringing something over for me. I slept most of the time when I had a break, being pregnant and Jim slept 99 percent of the time, so having people coming over wasn’t really something we wanted, but there were a lot of phone calls, keeping in touch that way. Now there’s social media and a lot of ways to get up to date on people. If you don’t have people to help, there are a lot of support groups out there, and you should seek it because you don’t want to be alone.
JF: We were fortunate to have family and friends that wanted to help, and did help. Now, as for your everyday schedule, tell us about some tasks you faced on any given day.
SF: I think the biggest task was making sure you got your medication on time. There was a time when you had a port put in your and I had to get up at four o’clock in the morning and put the medication in the port and then take it out, you have the IV bags hanging and I would deal with that for several days. Keeping the thought process organized and remembering what needs to happen and not mess up. It’s pretty huge if you mess up. I just remember writing things down, keeping a calendar because you’re tired, you’re stressed. If you need a reminder call, get one because you are helping someone who doesn’t know what’s going on and what they need.
JF: I am so grateful, and I want to reiterate that Suzanne was pregnant at the time. The timing of all this was terrible and impossible. She was pregnant and she was getting up at midnight to give me an IV, again at 4:00 a.m. and again at 8:00 a.m. before she left for work. It was absolutely insane. It was a rough road and we got through it. I have to ask: How did you stay so organized and remember when to give my IV and when to give me my pills? How did you do all that?
SF: I just used the old-fashioned method of writing stuff down. The visiting nurse gave me a chart of what you needed to have and when you needed to have it. It was all tangible, piece of paper and a pen.
JF: During this process, what would you say was one of your lowest points during the cancer journey we share together?
SF: I think the lowest point was when I too time off work and I was doing the ports and I was exhausted and getting no sleep and I was thinking how are we going to get through this, and in the meantime I am going to have a baby and still have to get the bills paid. There is a point in time in which you feel hopeless. But then there’s that glimmer of hope and a lot of that comes from the medical staff. We went to the cancer center and they were upbeat and getting a positive experience there, then when you get home and re-process things. Your friends, your family, they bring you back to reality. You don’t just give up. That’s not a good option.
JF: When we got married and we took our vows and Pastor Ed said, “In sickness and in health”, that really came true in our lives and I am grateful for that, so, thank you. What would you say is your favorite memory about your caregiver journey?
SF: I think my favorite memory is watching you get better, knowing we had a child on the way that has turned out to be a healthy, healthy child, and always looking to the future and where we were going. As far as being a caregiver, knowing you were getting better, I mean, it’s not like things were getting worse. There were so many days in which you looked better and felt better, knowing there is an end in sight to this journey. People do get well. It’s amazing we’ve got this technology. And attitude is important. Your attitude was so positive. Your business was busy at the time, and your partner was showing up and having you sign on documents. We still had a lot of great things going on.
JF: It’s very hard being positive when you’re a patient. I did try to stay positive, and we know not every patient has a positive outcome, but being positive helped me through my journey. I couldn’t imagine going through it any other way, regardless of the outcome. I tried to be positive and having a caregiver like you made it easier to remain positive, so I am very grateful for that. Here’s another question: I know how I felt when I learned my cancer had gone into remission, but as a caregiver as my wife, what was your reaction when you got the news?
SF: I felt like this was a special sort of treatment you went through, a stem cell transplant. I felt like this is going to keep you well, forever, throughout your life. This is an amazing thing. It wasn’t like the first time, I didn’t know you the first time when you went through chemotherapy. This time seemed so much more like a treatment that could be a cure. I felt confident that you would stay well.
JF: So grateful. Let me ask you this: Is there something we had been looking forward to, once we got that news, just to celebrate, just to acknowledge our happiness at that point?
SF: Well, Jessi was not born yet. We would go to our land in Wyoming or we went to Estes Park and we just got away to get our mind off everything.
JF: I remember the first night we went to Estes Park with our dog at the time, Mr. Bojangles, and we stayed in a cabin right on the river, and it was so nice being in a different place altogether, having a chance to reflect on being grateful and knowing that the journey was being one step behind us.
SF: I would strongly suggest that people do things to get their mind off the situation, get for a walk, get some fresh air.
JF: As for your life, what have you been doing with it now that you are no longer a caregiver for me as a cancer patient?
SF: We have been raising our daughter and moving forward with life, raising our daughter and the day-to-day routine that most people live.
JF: We have been very fortunate. Jessi is a teenager, which makes you a caregiver for her and a caregiver for our family. You do such a great job of keeping Jessi and I organized, sort of a continued role as caregiver, and we probably need to pitch in and help out more than we do, but I just can’t say enough about the kind of wife and mother and caregiver that you are. Speaking of the future, what are your hopes and dreams?
SF: I think just maintaining the good health we enjoy. I don’t need a lot in life, I like simplicity. I want to do what everybody else does, I want to be able to go on trips and get through my daughter’s teenage years and see her go off to college and make sure she has a great life and that one day we can retire and just be comfortable, and not stressed.
JF: I bring up one thing about Suzanne our audience doesn’t know, but Suzanne growing up, got her first horse in elementary school and she loved horses and worked at a racetrack after high school. It had been a dream of ours after we met to get a horse for Suzanne and we were very fortunate to get property in Wyoming where we could have a horse. Tell us about your horse, what his name is and what you enjoy doing with that part of your life.
SF: We have a horse named Cowboy, and I enjoy riding him and I am an outdoorsy person and he’s getting up there in age. I enjoy doing rodeos here and there, and that’s my hobby.
JF: It sure makes me happy to know that someone who did so much for me gets to have a high level of enjoyment in their life, too. Here’s another question: Now that my cancer is in remission and that part of our journey has been in remission for 15 years now, why don’t you reveal how we like to celebrate certain milestones.
SF: We like to take trips, we like to go to Wyoming to our land and we like to go out to eat, we do that a lot.
JF: It is kind of nice every year, with our remission date in August, which coincides with my birthday, so I am grateful for that. What words of wisdom would you give someone who is just beginning their journey as a caregiver?
SF: I would say in the beginning, it’s just gonna be surreal when you find out this is the road you’re gonna be going down. Try to take a step back, breath and realize it’s not as bad as it appears. People do make it through this, so be a good support system and think the best and keep thinking the best and don’t think the worst. You will be amazed at how you can get through this. And one thing as a caregiver, you have a tendency to put things in the past and I think patients do, too. Life goes forward and you will go forward and there are always great things ahead.
JF: Now let’s move on to the lightning round, and it’s a series of a few questions and we want your brief responses to them. First question, what was the scariest moment that you experienced as a caregiver?
SF: I would say the scariest moment was knowing I was pregnant and my husband had cancer.
JF: How did you overcome that fear?
SF: Trying to be futuristic and think that my daughter was coming, trying to prepare my life for having a child and hopefully having a father. I just overcame it, that’s all you can really do.
JF: Give us an example of something you accomplished during your cancer caregiver journey and how that made you feel.
SF: Well, I accomplished working full time, except for the two weeks I took off. I feel like I accomplished preparing to be a mother, which was a huge accomplishment and I accomplished getting you through your illness.
JF: Now, what was the piece of advice you received and how did that help your caregiver journey?
SF: I wouldn’t even call it advice. It just the same words I heard from friends and family: “Suz, we’re here for you. Jim, we’re here for you.” And that’s all you really need to hear from people.
JF: Yeah, we’re very grateful for the way people stepped up, that outpouring of love that people shared with us. Here’s another question: What was a resource that you found useful as a caregiver that you might recommend?
SF: I can say now that there are resources today that I didn’t have when we talk about organizing and writing stuff down. I do know that there is now a book called the “Can Plan,” and it was put together by a young woman that took care of her mother who had cancer. It is a great resource. It tracks what is going on with the patient. There is also a book that is great for the patient and caregiver. It is called the Altologist stem cell transplant book, that’s a great resource. I would also recommend the “Eating Well Through Cancer Care” cookbook, simple recipes for patients and for families, that’s a great resource.
JF: And as you found out being head chef during my care and most of the time throughout our marriage, I can say that as a cancer patient, your appetite has huge swings and what you have an appetite for and what tastes good, and having a cookbook that is designed for cancer patients whose tastebuds might be altered during treatment and the short window of time you have to prepare something that might be appetizing and nutritious is a big part of meal preparation. So those are some outstanding resources. I know the “Can Plan” organizer, I wish I would have had one of those during both my cancer journeys because not only does it keep the patient and caregiver organized, but it also has inspirational and motivational content in the planner that can help you day by day stay positive and be optimistic about the future and about the outcome, so those are some great resources. Another thing I would like to ask you is, obviously we made it through the cancer journey, you successfully gave birth to our daughter, Jessi, and she is healthy and I have been in remission for 15 years, but if you had to do it all over again, and if you knew that we all were going to receive the same positive outcome, what would you have done differently?
SF: I would say I would try to have more patience through the whole process. I feel like there was a point in time that you feel impatient, you want it to go quicker. I would have taken some steps back because you can lose patience with the patient, trust me, and you regret that somewhat. So, I’d try to have more patience and try to keep in perspective that this, too, shall pass, because it will. If I look back and think about it, I think patience and positive are the most important things of being a caretaker, and we talked about before, don’t be afraid to ask for help because there are so many people that will help and don’t forget support groups, there are gofundme pages, but you cannot not ask for help because it will drain you. Just know that people are there for you.
JF: Well, you were there for me, and my hope and wish for every patient listening is that you have someone like a Suzanne that can be your caregiver. And it may not be one person, it could be two or three or four, but it’s very hard to ask someone to help you. They might not understand and might ask why are you putting so much burden on them, but is truly is one of the most important parts of the cancer journey. I couldn’t have done it without Suzanne, and the first time I could not have done it without my parents, who were there to take care of all the details. There’s so much that goes on with insurance companies with appointments and medications and cooking and chores around the home and cleaning, and it is endless, the workload a caregiver undertakes and being able to delegate to others the work that needs to be done in a way that is organized, is key. Suzanne was wonderful in doing that, and doing that while she was pregnant was just unbelievable and I am so grateful for you, Suzanne and so thankful, it’s unbelievable what you did. I hope that people listening can take from take away something from your words of wisdom. You have laid so many resources and tools and tips that you used through our journey and I hope that people can gain some insight in their journey as a patient or caregiver because having someone helping behind the scenes is vital and Suzanne was definitely rock star status when it came to that. Before we wrap it up today, all of the resources Suzanne talked about can be found in the Show Notes at the bottom of this podcast or at CancerInterviews.com on the Show Notes page for this episode and there will be links to the resources like the Can Plan and the cookbook, so we want you to check that out. Suzanne, could you leave our listeners with one or two final pieces of advice, then let us know if there is a way to follow you online, with your Facebook handle or something like that, and then we’ll say goodbye.
SF: One piece of advice I would have is to encourage the patient to get better because I know there will be times in which the patient feels so run down and crummy, and you have to offer that encouragement as a caretaker, and just keep doing that, as frustrating as it can be at times, because it does pay off, and they need to hear it. Just remember that you are their guidance as they move toward the end of this journey, and getting better and moving on, enjoying life, from here on out. I am not on Facebook often, but my handle is Suzanne Foster, Golden.
JF: Well, Suzanne, thanks for your time and your expertise and your knowledge. Team Journey salutes you, and we’ll see you on down the road.
SF: Thank you.
JF: To all of you listening, please know that you are not alone, we are all in this together, and Together, Everyone Achieves More, and until next time, take care and we'll see you on down the road.