Episode 4 - Greg Oberst - Covington, Washington - USA - Cancer Patient Caregiver
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!
Bruce Morton: Hello and welcome. I’m Bruce Morton, and this is the Cancer Interviews podcast. Our guest is Greg Oberst of Covington, Washington. Greg found himself in the role of caregiver after his wife was diagnosed with breast cancer. Greg, we look forward to your insights and we hope they can be informative and inspirational for someone in a similar situation with a loved on who is battling cancer. So now, let’s get started, and Greg, welcome to Cancer Interviews.
Greg Oberst: Thank you, Bruce. Thanks for having me.
BRUCE: Greg, first off, provide a snapshot of your life, tell us the story of your life, where you are from and what you have done, up until the time you became a caregiver.
GREG: Well, I grew up in Oregon on the Oregon Coast, first 18 years of my life, then left the coast to go to college in Eugene, Oregon, spent four years doing that. After that, continued to work and live in Eugene, in radio, as I had majored in broadcasting and telecommunication in college, and started a broadcasting career while I was in college, picked that up and spent ten years working in Eugene, and then ultimately to Seattle, Washington and have been in radio, television, marketing, advertising work there since then.
BRUCE: Within all of that, there was a very blessed day in 1989 when you got married.
GREG: That’s right. How could I forget that? I did along the way meet my wife in Eugene, then we moved to Seattle and got married. And while we are talking about major life accomplishments, we did have a daughter, Olivia, ten years later in 1999, then settled down in Covington, Washington, kind of on the southern edge of suburban Seattle, toward the Cascade foothills.
BRUCE: Now this was great life path for you, but it did eventually take a turn for the worse. Can you recall when you first had an inkling that Linda might be facing a serious health issue?
GREG: Yes. Linda has always been very good about visiting her primary care physicians, obstetricians and other assorted doctors through her life, keeping up with her health, and I knew on one particular day in 2013 that she had a mammogram to attend, and like many of her other mammograms over the years, I didn’t give it much thought, thought it would be nothing, I‘m sure, thought it would be negative, I’m sure, so I had to admit to some surprise when I got a call from her and she was frantic and in tears, I was at the office where I worked in downtown Seattle at the time. She was really broken up and I was wondering what it was she was trying to tell me. But the words she could put together through the mild hysteria, I got impression the mammogram didn’t go well, and they saw something in the imagery produced, and it wasn’t good. So she was just getting in her car when she called me, and she wasn’t that far from downtown where her doctor’s office was, and we met downtown. At first, we didn’t say much, then she explained in a little more detail what happened, and what they saw in the mammogram. So that was the first blunt instrument of that experience, getting that call after the mammogram and meeting up with her and getting some information I could react to, and understand the situation a little bit better,
BRUCE: Linda had major changes lying ahead. What sort of changes did you anticipate for yourself?
GREG: That’s a great question because now you have to think what’s your role going to be, going forward. One thing I quickly discovered was that the last thing Linda wanted to hear was that, ‘Everything was going to be okay.’ As guys, as husbands, we tend to want to fix things right away, for our family and our spouses. In this case, for her was this false sense of security. She didn’t want that. She only wanted the truth, what was real and what was factual, and to deal with that. So, ‘Honey, it’ll be okay,’ was just off the table, we weren’t going to go there with that. What we were going to go with was what we knew and go on a fact-finding mission, so my role, as I quickly found out, was to help her in that regard and be her partner in this fact-finding mission, and there was a lot of ground to cover. It’s true that another set of eyes, caregiver eyes, is always best. It’s unfortunate when someone is facing a major medical procedure, a surgical procedure, has to go it alone, there’s so much information, it’s nearly impossible to do by yourself, I don’t care how smart you are, to take in all that information and filter it so that it can make sense and is appropriate. So I knew my role going forward was to be her partner in fact-finding, gathering and understanding the information, asking the right questions, figuring out which questions to ask, taking it back to her and the two of us working together to figure out the facts and what are the options going forward, what’s the timeline and that sort of thing. Sounds kind of obvious, I mean, of course, you want be there, but it becomes critically important to solidify that plan and when you are in there with that doctor, getting that information and listening to it, that you are really paying attention. One thing we did, with the doctor’s blessing, was to record every doctor’s session; but even with the two of us listening, we would still miss some things, so it became very handy to have a recording of every conversation to go back and reference, along with our notes. That became a tool along the way. I recorded every conversation with every doctor, every step of the way.
BRUCE: It sounds as though every step of your game plan was formulated pretty much on your own. You didn’t hear from another person who was a caregiver, but did hear from a great deal of health care professionals. Was there any other external source learned from to aid with Linda’s journey?
GREG: Well, the idea of a second set of eyes and ears in the doctor’s office isn’t new for anybody besides the patient going in, I was certainly aware of that. I am sure there was some level of Internet research I engaged in somewhere along the way. I don’t recall reading any books or anything like that, or frankly, getting any advice from loved ones in similar situations. Her family was very supportive, hers and mine, throughout the whole process, and I’d been through enough other medical situations with Linda. The birth of our child wasn’t exactly an easy process. This was a little reminiscent of that procedure. Everybody was ultimately healthy and fine after the birth of our daughter, but it was a difficult and rocky road. So we had little bit of experience in this arena, how to listen to doctors, how to listen as a partnership, how to decipher information, so, now that I think about it, maybe that experience helped us when Linda got her diagnosis for cancer. So maybe we were a bit better prepared than others couples facing a similar experience.
BRUCE: So once you formulated this game plan and what you were going to do, what were some of its highlights, things you had to do that you had never done before.
GREG: Cancer treatment is pretty daunting, and there are so many layers to it. When it became apparent that it wasn’t going to be one doctor, but a whole army of doctors, oncologists, surgeons, reconstructive surgery technicians and surgeons, it was just an endless line of doctors. So we could see that pathway lining up early on. We had to get ready for this, knowing it wasn’t going to be a quick process. There are steps to the process, and they are going to all take time, and we realized this wasn’t going to be done in days or weeks, more like a year, then there would be the aftercare. If you’re successful, you’re monitoring those followup visits and mammograms and the like. Again, there was the realization that this was going to be a long term situation and something that was going to be with us for a while. That was a bit of an eye opener, but that was the reality of the situation.
BRUCE: Okay, there was that team of health care professionals. Did their treatment include home visits?
GREG: No. It turned out all of Linda’s visits ended up being in a hospital setting or a clinical setting. We were able to avoid the home care layer.
BRUCE: But there were a number of followup visits, and spearheading that transportation workload would be you. What was that like as you tried to mix it with your full time job?
GREG: It’s tricky. At that time we had a teenager in high school as well and not quite a driver yet. So managing her schedule, my schedule and Linda’s appointments was a challenge. Early on, Linda was able to drive to many of her appointments and it was just a matter of my meeting her there at the office. We tried to avoid at all costs her going in there alone, and largely we were able to do that. So, pre-surgery, it was just a case of me breaking away from work to meet her at this doctor or that doctor. When we got to the surgery layer of the treatment, that was different. That required time off for both of us, of course. We were quite fortunate to be working for companies that were very accommodating to our situation. We had the time off and we had people willing to cover for us throughout the whole process, so that’s where the wider support network starts to come into play, where your place of employment and family members step up. And then we had friends, if Olivia needed a ride to this event or that, to school and back, we had a nice network of nearby friends who were ready to take Olivia where ever she needed us to be if we weren’t able to do that. So that’s definitely a thing, having kids and transportation involved, but in our case, the support was there.
BRUCE: That’s the transportation piece, but the next piece I want to bring up is one that affects some, but not all cancer patients. Sometimes cancer patients have certain dietary needs. Did that apply in Linda’s case?
GREG: Not initially. In Linda’s case, she was diagnosed with non-invasive Lobular Carcinoma in Situ, in a very early stage. That it was very isolated at the time and very early and very treatable was a good thing and in her treatment pathway we were able to avoid any kind of chemo and radiation treatments. Those are the kind of treatments where you probably start to think about diet more than she had to, aside from eating healthy and eating the right things and not doing the sorts of things that would challenge one’s body. I think we tried to eat right, but there were no other dietary considerations.
BRUCE: So you’re a caregiver, you have a full time job, but there’s also the matter of keeping the house clean, there’s the matter of paying the bills and there’s the matter of dealing with the insurance provider to make sure Linda is getting the proper coverage. That’s a lot of balls in the air. How were you able to stay on top of all this?
GREG: The support I had was very helpful. I’d mentioned it earlier. It can’t be understated. I am trying to support Linda as best I can throughout the whole process; but there were also people there to support me and Linda as well in other ways. She needed support at her office so she could get away. I needed the same kind of support at my office, which was absolutely there every step of the way. And then we had friends and neighbors who would just pop out of the woodwork and show up at our doorstep with big, giant plates of food so we wouldn’t have to cook. Around the time of the surgery, I rarely had to cook. That was just a beautiful thing. At the same time, there is a limit. People want to be supportive, but at the same time, the proper amount of distance is important, too. So we kept the support limited to the front door. A party at our house just wasn’t gonna happen. We weren’t in a position to host people.
BRUCE: This was a lengthy process. Did your caregiving go through any sort of evolution? Was there anything you did near the end you didn’t do near the beginning?
GREG: Yes, I think so. I was doing it a lot better. Because there are so many layers and so many doctors and so many therapists, at first it feels a bit uneven and awkward, but as you get into it, it almost becomes the like a job. You start to get the drill, you start to get the routine a little better, and you’re able to anticipate what’s next, based on your experience. So I could say at the end, I was a better caregiver, simply because of the experience. Filing away all the knowledge, everything starts to become easier, even the medical terminology. Some doctors are better than others when it comes to speaking in layman’s terms, while others drown you in medical jargon; but after a while, that medical jargon became less foreign. And then, along the way, there was a lot of individual research Linda and I were doing to look up what other experiences people have had and what pathways they took. So, the more information, the better. We got better at the fact-finding as we went along. As mentioned, I recorded every appointment and get better and better at transcribing the text of these appointments. This gave us printed pages of what we’d heard, so we could go back and see if we’d missed anything, so we could look at it again and review. It becomes businesslike and you have to treat it with that sort of efficiency. You need to be efficient at your job and you have efficient in this environment as well.
BRUCE: A person who is part of this story, of your journey and Linda’s is your teenage daughter. How did she figure into this, and to some degree, did you find yourself being a caregiver for her?
GREG: She was a consideration in all this, and the first thing we had to do was figure out how to break the news to her. She was just getting to start her freshman year in high school. That was a dicey time for any teenager. There’s lots of apprehension and nervousness, not to mention biological consideration. Just an awful time in her life for something like this to happen. We didn’t tell her initially about the diagnosis, mostly because we were trying to get all the information we could. In many cancer diagnosis situations, you get the information slowly. In Linda’s case, you get the mammogram, then you get the biopsy. Well, the biopsy takes ten days to two weeks to come back. Then you get the call. That was the worst time of this whole process, waiting for the biopsy results after the mammogram to precede the diagnosis. So we didn’t say anything to Olivia right away. We had a vacation planned to the Oregon Coast, so we went ahead with that. For Linda and I, it was a bittersweet vacation because we knew within a day or two of our return, we would be getting the biopsy results. So when we got the results, we met with an oncologist to figure out a path forward. Shortly after that, we sat Olivia down to give her the news. It was the last thing she was expecting to hear, of course. I’ll never forget the moment. She was speechless and didn’t know how to respond. All she could think to do was get up and go hug her mother, and that’s all she needed to do at that point in time. I was very proud of her. As she started to get her arms around the situation in the coming days, then she started to ask more questions. I let her be involved in the process as much as she wanted to be, short of coming along to the doctor and listening in on the exam room conversation. She did become attentive in terms of wanting to know how a visit went. We then were able to filter the information to provide a layman’s description of how the appointment went. Going forward, we were very truthful all along the way, holding nothing back. We also warned her there would be times in which we wouldn’t be able to take her here or there, and became proactive in arranging her own transportation through her network of friends. I also told her, without success, that I would like more help in her terms of cooking and cleaning. She was, after all, still a young teenager. But it wasn’t a huge issue, especially when all the food started showing up.
BRUCE: Well, Greg, we’re happy to report that you got through this and Linda got through this, and that Linda got the upper hand on her cancer. What was your reaction when you got this outstanding news?
GREG: Linda’s cancer was at an early stage in one breast, so her choice was a mastectomy, and we knew that the chance of recovery was very high and the prognosis was good all along. This goes back to my earlier point about her not wanting to hear me say that everything was going to be okay, but it was different when the doctors were able to check that box. When the surgery choice was made, we could see that the prognosis was very good. That was great to hear, but it wasn’t a guarantee, either; they don’t offer guarantees in this sort of work. But we felt very confident through this whole process. When the surgery took place, it was very successful. The followup didn’t show any residual cancer hanging around, so that was just another step in the process, more good news, a gradual situation, and we had more and more confidence that we had solved it at the moment. Then again, there are the annual return visits back, the checkups and you’re not completely confident until you hit that magic five-year mark, which she did hit eventually. For me, the biggest celebration was getting to that milestone. It was only then that I began to feel that we had licked this thing. We survived it. She survived it, and she has been healthy since.
BRUCE: Is there any way you guys celebrate this milestone?
GREG: No. We have other milestone events that we celebrate, but not that. We were happy to have it behind us.
BRUCE: Now that the caregiver experience is behind you, how would you rate yourself as a caregiver?
GREG: I wasn’t perfect. There was a lot to learn and I did learn a lot. At the end of it, I think I was pretty good. In retrospect, there are things you might have done differently, but not in a major way. No regrets that led to any unfortunate outcomes. I guess I would give myself a B+, maybe an A.
BRUCE: Not bad. Greg, we are going to wrap it up now, but before we do so, I would like for you to think of someone who is watching and listening right now who is on the verge of the position you were in. If there is any overarching bit of information or advice you would like to pass along, what would it be?
GREG: I would say it’s being there in the doctor’s office with your partner or your spouse or whoever you are offering the care to. Different people go into different doctor’s offices in different states of mind. As a caregiver, you can go with a more settled state of mind, a clearer head, perhaps. So I would say the single most important thing is to be there, and listen. Listening with another set of ears for procedure options when you are hearing diagnosis or recovery options, really any bit of medical information, that second set of ears is just so important. And take as many notes as you can. If you have a cellphone or other device, then record the conversation. Make it clear you are recording the conversation. I don’t know of any doctor that would wave that off. Ours didn’t. They supported it. They wanted to make sure we got the information correctly. But that little tool was very helpful, and it gave me confidence because you are taking in so much information, you’re thinking, “What if I miss something?” So it is a tool that is practical and it gives you peace of mind in the moment that you are not going to miss something important.
BRUCE: Greg, that is a great story and one that was well-articulated.
GREG: Thanks, Bruce. Anytime. Thanks for having me.
BRUCE: And please know that if you are listening, that you are not alone. We are in this together, and that Together We Achieve More. And so until next time, take care and we will see you down the road.
LINKS TO RESOURCES AND INFORMATION REFERENCED IN THIS EPISODE:
Website: www.CancerInterviews.com - click here
YouTube: www.YouTube.com/cancerinterviews - click here
Newsletter: My Team Journey Newsletter - click here
Facebook: Private Facebook Group - click here
Guidebook: Caregiver Quick Start Guide - click here
Guidebook: Patient Quick Start Guide - click here