Hope for the Cancer+ Journey Podcast

Debbie Taylor Williams: Welcome to Hope for the Cancer Journey. I'm Debbie Taylor Williams, your host, along with today's co-host, Lauren Spaulding. Today, we're excited to welcome Jeff Stone. Jeff worked almost 100 shuttle flights in Mission Control Center at NASA and was honored to serve on the last shift of the last space shuttle flight.

While working in Mission Control, Jeff met his wife, Susan. In 2016, he was diagnosed with rectal cancer, which set him on a whole new mission. He's here today to talk with us about his journey. Welcome, Jeff. Could you start by telling us a bit about yourself and what your cancer journey looked like?

Jeff Stone: Debbie, that was very kind, and I'm happy to be here. My journey was completely out of the blue, as most of them are. Just unexpected. I went to a routine colonoscopy and I woke up and the doctor said, "Mr. Stone." I said, "Yes." He says, "You have cancer." I said, "Wow." That wasn't what I was expecting to hear at all.

I had no preparation for that. It was just boom, right there. The response was, well, we're only one week out or ten days out from Christmas, and we can put this off until after Christmas. That was the first thing that I thought of and I said that. I said, "Do I need to do anything right now, or can we deal with this when we get back from Christmas?" He said, "No, it can wait. It's early." I said, "Okay, great." I just shut my brain off at that point regarding the cancer thing and started trying to get through the rest of the colonoscopy thing and get home. We were planning to drive up to Indiana on our annual Christmas voyage that we did. So, it just really sort of immediately got put on a back shelf.

Lauren Spaulding: Jeff, do you mind me asking what stage your cancer was when you were diagnosed?

Jeff Stone: I think they call it 2A. It was rectal cancer. He said it was early. It hadn't broken out. It hadn't really gotten very big or anything, but it was something that we definitely needed to deal with.

I kind of went through a period of time, a few days, trying to just process what this is going to look like and what this means. If you know much detail about the digestive system, then you probably understand the implications of this, but I didn't know a whole lot about it at the time, so I had to learn some stuff.

It turns out I have a cousin who is a very successful liver doctor. He actually was running the Indiana University Purdue University at Indianapolis Medical Center, or at least part of it. I thought he'll know what to do, so I called him and I said, "Hey, this is what's going on." He says, "Wow, that's a bummer, but it's not the end of the world. Especially if it's early. Just do what your doctor says." I said, "Okay, I can deal with that."

Lauren Spaulding: So you went in, you found out, and you had a little bit of a wait until after Christmas, and then you addressed it. What did they initially say you had to do treatment-wise, or what were some of the things that you had to do going forward?

Jeff Stone: The first thing was I didn't know how to approach managing the doctor side of it, so I just went with whoever showed up. I guess the gastroenterologist referred me to somebody local for oncology, and then they were connected to a surgeon who was connected to a bunch of other people, and they formed a team.

The really amazing thing about all this is that I really didn't do anything except what everybody told me to do. I didn't grab a hold of it and try to drive it or do anything like that. Susan is awesome about keeping track of details and looking around and seeing what sort of things need to be done and helping prod me in different directions. She did a lot of that. She asked a lot of questions, but it seemed like the doctor team—the oncologist and the surgeon and all the folks at Clear Lake Physicians—they were amazing. They just said, "Hey, we've got this team. We're ready to go put this together, and here's what we're laying out." I said, "Okay, what do we got going?"

Debbie Taylor Williams: I think hearing a diagnosis like this would have to be so scary because you don't know the implications of how extensive it might be or what it might entail. Like you said, all of a sudden you're just on this journey, this cancer journey. I understand that because that was my experience. All of a sudden it's this doctor, this appointment, this lab work, and you have to trust the process as you go along. So, what did that process look like for you?

Jeff Stone: Well, they said you're going to have to have chemo. We recommend that you have chemo and then that you have radiation. We're going to try to reduce the size of the tumor so that the surgery can be simpler and easier. I said, "Okay, that makes sense." Then we might have to do chemo later on too, which ultimately we did.

That was the way they laid it out. What I didn't understand at the time was it was going to involve chemo and radiation simultaneously. I had heard stuff. I know a lot of people and I ask a lot of questions and talk to people; I'm very gregarious. I'd heard chemo stories and I'd heard radiation stories and I'd heard cancer stories—not in a lot of detail, but enough to scare me and enough to make me realize I didn't know what was coming, but I knew it was not good.

There were all kinds of things that were going to possibly happen, and I just needed to go with it. One thing that my cousin did tell me was even if you wind up in a surgery situation where you have the bypass ostomy bag, he says there are people that live just perfectly normal lives with that. They've got to deal with things, but it's not the end of the world even if that's what you wind up with. But there's a chance that you don't wind up with that.

I said, "Okay, I guess I'll take your word for it." He was a dear cousin I grew up with right next door to us. If anybody knew anything, he did. That really helped settle a lot of the uncertainty factor because he reassured me. That kind of reassurance is, at least for me personally, helpful. It's very much like the kind of reassurance that I get when I'm around the Trinity family and immersed in this community that we have here of people that are just reliant on Jesus and God for everything. The more you can do that, the better off you are.

Debbie Taylor Williams: Jeff, when you say the Trinity family, what are you referring to?

Jeff Stone: Trinity Baptist Church. That's definitely our primary family here. We moved to the Hill Country and only knew one family here, who was an old Air Force friend. But since then, we've got this wonderful family from Trinity Baptist that's just indescribable.

Debbie Taylor Williams: Let me ask you, since you mentioned that, were you a strong Christian at the beginning of this cancer journey, or did you grow closer to the Lord through it and more dependent on him?

Jeff Stone: I'd say at that point I was a baby Christian. I got saved when I was a teenager, but then I went off and discovered all the things I'm not supposed to be doing and thinking and all that sort of thing for a long, long time. But it was always there in the back of my mind. I grew up in a Methodist church and we went to church, and you heard all the stories and all that. It was just blind faith; it wasn't a real understanding faith. That's changed a lot since we moved here and became part of the Trinity family.

Debbie Taylor Williams: We'll continue. You started going to see all these doctors that were in a team that were set out for you. What happened? Did you have the chemo and the radiation? What was that like for you?

Jeff Stone: The chemo involved putting in a port. I've got a nice double scar there because I got a port and then I went and did the infusion. After a while, the skin around the port started turning black and the port popped out. That was a trip.

Debbie Taylor Williams: I had a port flip twice. I had to get it massaged back in one time, and then it flipped again, so they had to go back in surgically and sew it back in. But I have not heard of one popping out.

Jeff Stone: It just came out. I talked to a lady today—the first person I've met since this happened—who had that same experience. I've talked to a lot of other cancer people who have had ports and they'd never heard of anything popping out. The doctor hadn't either. But they fixed it.

Anyway, at the beginning, the chemo and the radiation were concurrent. I'd go for a chemo infusion session once a week, I think it was, and go to the radiation, and that went on for like twelve weeks. I was really lucky that neither of those treatments really caused me a whole lot of trouble other than the time and being tired. Other than that, I was intrigued with the technology of it all, so I asked tons and tons of questions. I was just bugging those people. "What is this? What is that?" I'm just sitting there; I've got to find out what's going on.

Particularly the radiation, I was fascinated by the equipment and the way they were able to focus it. The idea was to try to reduce the size of the tumor. Another part of it was I was significantly more overweight than I am now. The surgeon said the more weight you can lose between now and then, the better off you are. Chemo started and radiation started in January. The surgery was in May, so I had a few months to do that. I was pretty successful and probably lost about twenty pounds, and I think it helped a lot.

Along the way, there was all this planning. My surgeon, this young Persian lady, was just astounding. She was amazing. She was tiny. She reminded me of a dentist I used to have who was this little bitty lady who could literally put both of her hands in my mouth at the same time. I was always amazed at the advantage being small was for a dental person, and I figured the same thing's true of a surgeon. It turns out she did it all laparoscopically. Basically, my entire rectum had to come out. That's a pretty important organ. I've learned a lot about it since then.

She went through three different places and robotically, laparoscopically did this. She took the end of the large intestine all the way down to everything but the last quarter of an inch, the muscle there, your sphincter. She took everything in between there out and then sewed those together. It took some time to heal, and during that time is when I had the ostomy bag. They did an ileostomy right there at the corner of the small intestine. That was quite an interesting thing. There were a lot of events that kind of stick out a little bit. It's been ten years, so I'm kind of forgetting a lot of this.

Lauren Spaulding: What were some of the adjustments that you had to have after getting the bag after surgery? How long did you have to keep it?

Jeff Stone: Eight months. They had to give the resection time to heal down there so that it didn't leak internally. It's doable, but there's a lot to it. Probably my biggest disappointment during the entire time was the lack of training on how to deal with the ostomy. Even in Houston, where seven and a half million people live, there was an ostomy support group. Actually, there were two. I got in touch with them and I really didn't get any kind of positive feedback out of any of that.

These people are going through a life-altering thing, and then all of a sudden you've got this thing hanging on you, and it's full of stuff and you've got to deal with it. Basically, you've got a hole into your gut sticking out of your skin. Stoma, that's the name of the wound. This bag goes over it and basically glues to your skin, and then it's got a little quick disconnect thing on it so you can take the bag off and put the bag on. I was surprised at how unsophisticated it was. We have twelve people who've walked on the moon, and I felt like I was using rocks and sticks to try to deal with this ostomy situation. It felt that primitive to me.

Lauren Spaulding: That has to be frustrating.

Jeff Stone: It was crazy. There were times when the stuff coming through there was hot. One of my weaknesses is spicy food. I love spicy stuff. I've even tried ghost pepper stuff and enjoyed it briefly. Anything spicy at all would burn when it came out.

I also didn't realize the timing of it all—the motility, which is the motion of the food through your digestive system—goes at a certain rate. There are things that affect that, and that the speed of that affects the processing. At the hospital, they said, "You're clear, you can eat anything you want." I had seen this menu that they had with lasagna and some other heavy dish, and I said, "I want both of those." So I did. I ate all this food at the very beginning. They may have told me to start eating slowly because at first I wasn't eating a lot of solid food. But then they said, "Okay, you're clear for solid food," so I had two full dinners, and that was a mistake because my system was not prepared for that. It was a disaster.

Debbie Taylor Williams: That is good information for our listeners to hear. Jeff, I'm wondering since you didn't find the support you needed, have you since then run across something? We could put those links with the podcast.

Jeff Stone: I went off on a "do it myself" situation and I quit looking. I really wish that I had written a lot of the stuff down that I learned along the way because I learned the hard way on a lot of this stuff.

Debbie Taylor Williams: I wonder if now, through AI and different sources, that kind of information can be found. Tell us how your journey continued. You learned to use the ostomy, but you only had to have it for eight months, which is a long time, I would think, but not lifelong.

Jeff Stone: You just reminded me of something else. When you were with MD Anderson and Texas Oncology—that's all downtown Houston—I went to Clear Lake, which just floored people. They said, "They've got that kind of facility and skill out there in Clear Lake?" It was very amazing. It was very convenient. I was working at NASA and lived in Clear Lake, so it wasn't difficult in that regard at all. A lot of people having to go to a place like MD Anderson, which is world-class, have to deal with all the logistics of getting there, and that is a huge barrier.

The thing that got me the most out of all the visits that I had with all my doctors—my oncologist, Dr. Salaam, was a great guy—he said, "Well, we got this early and things are looking really good and you have like a ninety-five percentile survival category." I said, "Wow, that's really great." I said, "Well, why are there people who don't make it through this sort of thing?" He says, "Well, many of them just don't do what their doctor says. They miss visits, they skip visits, they just don't follow what they're recommended to do." I said, "Why not? What possible motivation would there be to not follow through on cancer protocols?" He said that's the number one thing that frustrates him the most is that people just don't do what they're supposed to do.

Debbie Taylor Williams: Well, that's a good word and good input in case somebody's thinking, "I'm just going to stop going to that appointment." I will say this, I did go to the downtown MD Anderson. It was a very easy, pleasant experience. Everybody there was amazing. I had been apprehensive beforehand because I had heard it was so huge, but we stayed at the Rotary House, which is a hotel that's connected to MD Anderson, and there was even valet parking at the radiation site. So, we had an extremely positive experience and did not find it to be a nightmare at all. I would highly recommend it to anybody who is wanting to go there.

Jeff Stone: I didn't mean to cast any aspersions on that. I know it's a wonderful place, but I just didn't get the experience myself.

Lauren Spaulding: You've told us about your treatment. Was there anything that you did specifically to help you stay distracted or anything with your routines that kind of helped keep you grounded? Were there any routines, distractions, and things like that just to kind of help with your emotions or just the process through going through treatment?

Jeff Stone: Well, one thing at the radiation clinic, they gave me my choice of music, and they had great classic rock. I looked forward to going in there and hearing that music for the entire time that machine was whacking me with radiation. In the meantime, I'm listening to all this awesome classic rock that I just absolutely loved, so that helped a lot. That really made a big difference for me.

As far as routines go, I got to looking forward to seeing some of the people at the infusion center and at the radiation center that were going through it at the same time I was. Like I mentioned, I'm the gregarious sort. I've never met a stranger really, so I'll just start yapping with whoever's around me. I got to know some of those people and I still have a video of one of the guys that was there with me when he got to ring the bell when his treatment was over. They had jigsaw puzzles out in the lobby that we would work on together.

There were people who were there who did not participate in any of that socialization of the situation. They were the people that I looked at that I thought, "Man, they just don't look like they're having a good time at all." They looked pretty sad. But the people that were kind of into it and engaged with it and everything, they seemed to have a much better attitude and were dealing with it a lot better. I can see how it would be real easy to just take a book and just sit there and crawl into yourself. But I think the socialization part of it was as much therapy for me as any other part of it.

Debbie Taylor Williams: And how are you doing now?

Jeff Stone: Well, I'm ten years older.

Debbie Taylor Williams: That's good. After a cancer diagnosis, aging is a blessing. We don't look at it anymore like, "Oh my goodness, I'm getting so old." Every year you're like, "Oh my goodness, I've made it another year. Thank you, Lord."

Jeff Stone: I do say good morning to Jesus every day. I wake up and that's one of the first things that comes to me. "Okay, we get another day. Let's see what happens."

Debbie Taylor Williams: Jeff, we appreciate you being with us today so much. Is there any final thought or word you would want somebody to hear or know if they went and got a routine colonoscopy and were told you have cancer?

Jeff Stone: Well, I have two things with that. One is, I'll think about the answer while I'm telling another quick story. Ostomy bag sounds like a death sentence. How can you possibly deal with that? I had some huge, huge issues, but managed to get through them. One of the really cool things was I got back into playing ice hockey after the surgery while I had the ostomy bag. I'm out on the ice skating around with all these adults playing ice hockey, and I told them, "Hey guys, I got a bag and I'm here to play hockey anyway." The unexpected response to that was they stayed away from me, so they didn't bother me for the puck nearly as much as they did before. You never know where a silver lining's going to come from.

I would say don't stop living your life. Live your life. Grab it for all the gusto that you can. Now that I've been a member of the Trinity family, I realize that maybe I wasn't consciously doing it, but I had a lot of faith. I had a lot of positive energy support. I never really let it get me down. There were opportunities for that to happen, but I didn't. I have no doubt, absolutely no doubt 100% for sure, that God has saved me for something. Maybe it's today, maybe it's tomorrow, I don't know what it is, but I'm here for a reason. It's his reason, and I'm trying to figure all that out as I go. But there's no question that that is the thing that needs to stick with me through this, and if I could have anybody else recognize that, then it's all good.

Debbie Taylor Williams: I think that's wonderful. You're so willing to share your story and encouragement for other people. You are a blessing to us. I get to be part of that Trinity family, and you are a blessing to all of us there. It's wonderful that you were able to have a reversal and you no longer have the ostomy bag and you're back to normal. Jeff, we thank you so much for being with us today. Your story and insights are a true gift to our listeners who are navigating their own cancer journeys. We deeply appreciate you sharing your heart and your time with us today.

To our listeners, please subscribe and also share this episode. It could be the exact message someone needs today. Thank you for listening and keep looking up as you take hold of the hope you have in Christ. Remember Psalm 39:7, "And now, O Lord, for what do I wait? My hope is in you."