Susan Holick-Bade and Wendy Rowehl-Miano

00:03 Hi, my name is Susan holick-bade, but everybody calls me Sue 53 years old today's date is July 27th, and we're in New York City and the international patient and family-centered Care conference my relationship to my interviewer is that she's one of my best friends and I've known her for about eight years now and we volunteers together.

00:29 Hi there. My name is Wendy rowehl-miano. And I am 56 years old. Today's date is July 27th, 2016. I too am in New York City attending the international patient family-centered care conference and my relationship to sue is one as a friend.

00:53 All right, when we get started in terms of how did we meet? Well, that's a good story we met because at the time my mom was a cancer patient at that then Ireland cancer center and she was undergoing treatment and she had said to me that there was a opportunity for a conferences for her to attend and she was interested in going cuz she want to learn more about how patient and family-centered Care was coming about and one day we were at the hospital and she was having her infusion her cancer chemotherapy treatment and in the room walked you.

01:37 That's right. And you were there to talk about the trip and apparently Mom wanted to go but she wouldn't go if she didn't have me to go with her because she was at the time in her late 60s early 70s and in the middle of cancer treatment, she needed help and she knew she wouldn't be able to make the trip on her own and she needed me. I her caregiver to go with her. They got quite the bonus and you being added to the trip and I thought I was a pretty good trip. A lot of that conference. We came back with a 5 inch notebook full of great ideas and and at the time and Ireland at University Hospitals, you were in the process of beginning to build a free-standing cancer hospital. That's now called Simon Cancer Center at the timing was right.

02:31 So you wear your mom's caregiver and her course of treatment for ovarian cancer talk a little bit about what was positive in that role as a caregiver.

02:45 Probably one of the most positive things was that we became closer.

02:50 We had been a strange but just the distance between where I lived and she lived I was born in Akron and that's where I grew up and she was born there too. And I've gone off to Columbus to go to Ohio State and when I returned I moved into the Cleveland area, which is just North of Akron by a small drive, but being an only child I had learned to make friends for family member. So the distance was kind of between us only because of the physical Geographic distance and when I came home she decided to move closer to me and it was a real blessing that she did because being in the same city, then when she received her diagnosis, I was able to actually be with her and not have to drive an hour to get to her to take her to wherever she needed to go for a doctor's appointment or treatments or surgery or

03:50 Just anything that she needed assistance with and she did need assistance.

03:55 It turned out that becoming closer was both a blessing and a short-term and a bit of a a burden later on because it made it harder to say goodbye later. But I took another upside was the volunteering. Mom had always been really positive about helping others and sharing what she could to the betterment of others as well as the personal fulfillment you get out of it and then doing the during her cancer treatment. I started volunteering with her at the hospital because the volunteers were needed at the time to help give him put on the new hospitals designed everything from the artwork to how the patients are treated and and it was a wonderful experience and that just continues to today with volunteering there.

04:45 When I first met Bobby which was at one of those design sessions looking at the blueprints of a cancer hospital. There was a young woman who was there with us who was actually having a rough day and what struck me the most about Bobby your mom was that she reached out put her arm around her and gave her a hug to let her know that she cared and she was there and I thought who is this remarkable woman?

05:15 Who had not only such strength in terms of her own Journey, but

05:23 Remarkable compassion and

05:27 And that was some it was an honor to be able to witness that and and then as I said, you know what the bonus was you joining her Legacy in terms of volunteering.

05:43 And what are we used to say? I used to say I'm with the band you are you were with the band hip I was the roadie.

05:51 It was another really great positive experience that came out of everything with me volunteering and kind of hanging out with the nurses and the staff and the other volunteers which is why I kind of recall at the a returning to Grace in the industry. I work in where we're brutally fast and then having to be fast to accomplish our goals, sometimes the pleasantries the courtesies the niceties are put aside the way business has to be in order to get done what we do but it had it had and I didn't realize it changed me over the years and being back about amongst people who have a Grace about about themselves.

06:35 Positively influence me again and in a way, it kind of slowed me down to make me think about just how am I impacted others in a in a emotional way behind and that that remains today something that I am mindful of

06:53 Well Health crisis, I think can return us to the core of what it means to be a human being and to me one of those core attributes has to be in community and to know you're not doing it alone.

07:09 So with caregiving comes some real stress and challenges talk a little bit about that. Mom had lived about an hour away. But when she moved closer the that made it much easier on me, but it also still maintain some Logistics issues. Just getting her to her or she was a very early riser type of person and I'm not and Associate her preference was always to have the first appointment of the day with her surgeon and and I've learned since then that's a wonderful plan of action because you you have the best chance of not being later for slate later into your day because someone else is running late, but that also meant she had to be at the doctor's office at 7:30 which for us was an across town and we went from the southwest side in the suburbs of Cleveland across the Cleveland City to the east near East Side suburbs. So we had to deal with rush hour traffic here is smack in the middle.

08:09 We always were and dumb.

08:12 Cleveland and Ohio and journal have two different seasons. We have winter where there's ice and sleet and rain in two feet of snow and we have orange barrels. So there is always always

08:26 It seems like there's about two weeks in Spring and maybe a week in the fall. Where are you don't have construction or climatic influences on your drive. Let alone everybody else is trying to get through their morning or the afternoon cuz I actually mom's treatment would be an all-day event and we be leaving about 3:34. So we'd hit the afternoon rush hour. So the logistics of it was kind of a bit of a burn healing part of it was too I just been married. I'd only been married for about 2 years when Mom's treatment cancer diagnosis camping and we're going to the treatments and they lasted long days and long hours and then I did it end in the evenings when she needed to help.

09:04 Or there was something else that was it needing to be addressed. There were some 911 type of events that she called me instead of the squad that I would take her to the hospital emergency unit to kind of hard on my husband Doug and I for a while I think but he he handled it with his grace and I just said what you need to do you need to do you go do it and don't worry about me and that was such a release. It was such a giving of himself to allow me to be unburdened by my concerns about what was happening or what wasn't happening in our relationship. How do you recover I mean in terms of just being able to take care of yourself?

09:44 I'm not sure. I really have honestly it's kind of stayed with me. But at the time I've worked through the physical.

09:55 Aspects of it I will say they're the late evenings and being in with her for a long a whole day. And in the evening, I might not have eaten during that time. Maybe I didn't like what was in the cafeteria or didn't have the Italian to go make myself something or but just focusing on her. So I usually eat when I left her which was usually somewhere between 10 p.m. To midnight sometimes 2 a.m. Different depending on the day and there's not much open at that time in our area more so these days but not so much in the time frame. We're talking about 8 years ago.

10:33 So one of the fast food Mexican chains was about the only thing that was open, so I'd be eating tacos and burritos and stuff and then going home and trying to crash so that I could get up and do whatever I need to do the next day that the let itself is a little bit of weight gain, and I'm still struggling to take that off. So

10:55 Nobody your mom battles her cancer for over 4 years, and then she came to the point where she chose to stop treatment. And so

11:08 What do you remember internal server coming to that decision?

11:13 It seems like a logical one from her perspective. She had worked very hard in her 60s and 50s 50s and 60s to lose weight and keep it off and to make sure she was going to go into retirement and into her later years with as many tools and her kid is she could for enjoying her life and not becoming disabled by her age or influenced by that. So she was working out at the local gym with the senior citizens. She was in a tops, which is like take off pounds sensibly program and she was a leader in that for having taking the weight off and maintained it off and she was just way better condition than anybody I do including myself and at her age, that was awesome. So when she started going through the cancer, she started having side effects. She had neuropathy and her hands which limited her ability to do things.

12:13 Even just household chores dressing sometimes was difficult. She had acquired what we call chemo brain and she's always been a very sharp very mentally intact person and she saw these things and they were influencing her life and the quality of it was not what she wanted it to be a became probably at a point where she decided she'd had been diagnosed with cancer. She has gone through surgeries and chemotherapy and had precipitated and clinical studies and and she was kind of claimed as cancer-free and about nine months later though continue check-ups show that it had returned. She went through a second surgery and working out.

13:03 And they said, you know your stage 3 ovarian cancer you you may not ever recover. This may be your way of life. You may be forced to endure this for the rest of time and it could get worse too. But so far the surgeries were keeping the cancer at Bay along with a chemotherapy, but it was becoming apparent that that cancer was never going to be completely gone. And so there's only so much you can do.

13:28 I think all that she sat down and she considered what did she want to do and being at that point 74 years old and having had a very full life and not saying the road has one that she wanted to travel. I she spent a lot of time talking with a couple pastors are family and certainly long deliberation on her own time and concluded that she didn't want to go through that.

13:55 So after the third round she had surgery and no chemo and we figured we had an estimate for how long she thought she just make it through and she lasted a good nine months and the last five of those she was pain free and symptomatically. She was free of any side effects other than the chemo brain was still with her and then neuropathy, but she was able to motor about and carry on a life like you never knew. She had anything going on.

14:24 And I think at that point she had decided that she was perfectly okay with that. She had long conversations with with me and my main goal was to not influence her was to allow her to make her own decision and not push her to it or pull her back away from it, but just be there for her and whatever she needed for me to give that to her.

14:48 And I took a lot of Courage on your part 2.

14:55 Honor her decision and you know know how that was going to impact you in terms of loss of your mom.

15:03 And it seems like after all those years of not being all that close because of geography we had just spent three or four years of intense close this so it was a matter of I didn't say I didn't say I couldn't say it. I couldn't allow that to influence me. I thought and again that goes back to me just allowing her to make her own decision, but being there for anything that she needed for me. I mean there were enough other people who were trying to influencer who are trying to get her to not make that decision other cancer patients and survivors. They were even a few medical professionals who had really thought and told her she shouldn't go that round.

15:42 But our family and her real friends just said Bobby what you need will give you and if that's what you need. That's what we'll will give you.

15:54 You know your mom when she died made a decision to donate her body to Case Medical Center actually in terms of the medical school at Case Western Reserve University. How does she come to that decision? Yeah, that was something I hadn't even I had never I didn't see it coming. There was something people do it, but I think this goes back in line with her volunteerism. She was always at the ultimate volunteer at the end of this yours. That's that's it. That's essential volunteer was what am I going to do with it? She had decided she wanted to be cremated burial plot was down in Akron and we're leaving in in the primary in Cleveland area.

16:48 And she just kind of decided she was those students. I understand that they need training and they tell me that they need training on real people real real folks. And if I do this bill have that they don't have enough and they need more in I'll be helping to teach another generation of a medical students and I want them to do better for the folks that they'll be needing to help and this is her way of doing it and I thought what I just makes so much sense. How come we don't hear more about this and she did then she signed all the paperwork and I I signed off on it. We had to actually be interviewed to make sure that she was really okay doing this and that she was of sound mind and she's completely understood and that I completely understood so I wouldn't do no contested or make any problems later on the release of the body.

17:49 And I thought well, I really don't know why we don't know more about this but I've I've lined up to do the same myself. And anybody who's interested. That's just a wonderful way to die. So I guess I think it's the ultimate volunteer opportunity.

18:06 What are the values did your mom instill in you made? Volunteerism is?

18:13 Chord who you are as I know you are there other attributes that in terms of that relationship you had with her over.

18:23 Yeah for years that either were passed on and Legacy or in terms of how you saw your mom.

18:33 You will certainly she was a fighter. Yeah, but at the same time, I think she did it with Grace and she'd she'd give to so many other people and I think that was part of her being originally. She wanted to be a school teacher. She went to the University of Akron for a couple years for education and ultimately she started to my family instead of going into that profession.

19:01 I was probably the same sense of what I got out of it was the idea of giving to other people weather in through volunteer or through a profession and in her case she ended up doing the number of things over time that in her online. She did too.

19:18 Volunteer by giving of herself or her by her sharing her knowledge. And I think that I've got that deeply in My DNA it from her. It didn't come from the rest of my family likes tell you that that's all there is just that sense of wanting to give back. I'm privileged and I'm blessed in a lot of ways and I may not feel that way it when I get up for the first 10 minutes every morning, but after that I kind of get a reality check and I go yeah, what can I do today? What can I how can I make a difference in terms of involvement with a patient family advisory Council? So she shared very openly her decision to discontinue her acts of cancer treatment and that she had made a decision and I have hospice care.

20:09 And I thought you know her.

20:14 Her strength and also her

20:18 Honesty and

20:22 Ability to show us what end-of-life can truly be if you make the decision that your quality and your relationships matter and you know, they matter to your mom you do an interesting enough. I mean that happened in 1978. Sorry 19 2010. I'll get it right, you know, she passed in 2010 and that doesn't seem that far long ago, but it in terms of culture and perspective. It does to me seemed like ages ago because in 2010 there were a lot of people who around us and she recounts me stories why she was not why wasn't right there people things people said and they seem to be very much don't do it. Don't do it. That's not right.

21:16 Now you need to fight you need to fight no matter what you need to stay alive. And I think a lot of that was those folks projecting their own feelings and fears and and the avoidance of guilt by the folks who are left behind but as I saw it,

21:35 It was the ultimate.

21:39 No way of supporting her by by not trying to influence her knowing what I was going to be like I had no idea. I never lost anybody is closest before so it was something that I really didn't understand too much about from a mental perspective and certainly not from an emotional.

22:00 A side but I did later on and in fact, one of the ways we honored her was through a celebration of life. We didn't have her physically with us, but we had a nice big picture of front and then we had a little bit of a party and tell one of the local while funeral homes and it was everybody we could think of to invite come celebrate her life. We had a pastor who knew her with pretty well and he shared some wonderful stories and then I I got to say a few things, but mostly it was everybody just hanging out talking about her or in some cases just catching up because they haven't seen each other for so long and it's something that celebration of life was definitely the right thing and then as a result of the day since we had a formal event, there were a lot of flowers around and we made sure everybody got a flower to take home if they wanted one and a lot of the her friends were going to press them and bibles and then books as remembrances.

23:00 Of the day she touched so many lice. How does Bobby's fight with cancer change? How you live your life.

23:14 How to influence to mail it has influenced me a lot.

23:20 She went through such suffering.

23:23 Damn.

23:25 I I really had hoped I'd never come to see that again or personally ever experienced it.

23:34 The quality of her life

23:39 Really dictated the decisions that she made but one of the things I did before she even passed was I had been a cigarette smoker and I stopped smoking a Halloween 2009. So she saw for a year before she passed that I had stopped.

23:59 Perhaps I was something that I kind of in a way gave her a little bit of Peace of Mind Leah volunteering that volunteer at my volunteering is just everything kind came from that. I mean, I've done volunteer work in high school and in my earlier years, but not like this. This is my this is a commitment that I have made without feeling like it's a commitment. It's my joy at my pastime. It's my hobby kids were I have a great number of friends? I learn a lot from volunteering whether it's in a formal education meeting type of environment or whether it's walking down the hall and picking up something or from you. No conversation or having a conversation with a fellow patient caregiver in one of the lounges of one of the in patient floors are

24:50 Talking with Pope people are emailing. It's just it's such a community.

24:55 Well, you did a little bit more than volunteer you stepped up and led the council and you're in as we were beginning the Inception of that journey and actually pushed us the you you also gave us a call to action.

25:14 That's probably the aggressive side of the nature of my industry with my personality pushing through but it's not that the idea of asking for permission and not getting it and asking for it after you do it. It's just you step up and he needs if something needs to just get it done. What you doing.

25:40 For two years ago and 2014. You yourself were diagnosed with cancer. Can you talk a little bit about that? You know, that was very interesting situation. I had been going for annual mammograms for years. But this particular January I went for my annual mammogram and instead of the radiologist coming back around the corner going. All right, great. We'll see you next year. They said can you come back for a minute? We like to do a few more tests.

26:11 And to that it led towards them.

26:15 Me having a been diagnosed with a stage 1 breast cancer in one side and the short version of that is that one of the things I talk about very often is if you're having a family history or not go heavier in a mammogram because in my case it was diagnosed before it was even really much of an issue and so getting that out there and getting it done and I took some time to make some decisions. And by the time I did we went into the surgery. It was actually moving along so that an immigrant for me probably save my life definitely.

26:54 And you chose to have your Cancer Care?

26:58 At uh, seidman Cancer Center same place as your mom different Doc's new. I mean in terms of your decisions and support through breast cancer diagnosis how talk a little bit about how you move from caregiver to patient.

27:19 Well, that was an easier transition that I wish it was I think because I had known so much and had gone through so much with her. It was a pretty easy for me to transition to being a patient. My own experiences were very mild in comparison to so many other patients. I like I said, we caught it so early but I just had surgeries and then radiation treatment and then I did a clinical study for massotherapy to help the scar tissue. So that was really yet. I flew through it according to my doctor's which is again just I'm so fortunate.

28:00 It seems like cancer has been a big part of your life in the last eight years, and I was influenced you.

28:09 Well, I'll tell you I never understood percent firsthand what terrorism was like or post-traumatic stress, but I I feel it now I think cancer is a terrorist. It lurks somewhere in the background and it's possibly influence in your life. Once you've been affected by it in so many ways and you never know when it's going to return and strike again.

28:32 And at the same time

28:36 You just feel like

28:39 You never know what's going to happen, but you can't live your life worrying about it. You have to live your life. You have to move on but every time you go now I go back for my my annual mammogram.

28:51 You know, I wait for that person to come around the corner and say we all will see you next year versus would like you to come around and have a couple more shots films taken.

29:08 Have you talked to other?

29:11 Cancer

29:14 Patience about that the notion of cancer being a terrorist and how it is something lurking.

29:23 But the fear that it will come back. Yes, unfortunately too many of us feel that way. They just him verbalized in using those phrases. I know when a friend of mine another volunteer who had breast cancer and she was just getting past her six-year Mark coming up on her five or six year mark, and she thought she was going to be clear and she had a different cancer diagnosis and now she's working her way through that and when we've talked about it, it's the same thing and I hear it from other patients as well as family members. You never know what's lurking out there and you just don't have an idea when it's going to rear its ugly head again.

30:06 But it doesn't run your life and you continue to give

30:12 Lots of energy Talent. I'm a Novation humor to the patients and families that are cancer hospital.

30:25 How does that a?

30:28 What would you say in terms of that?

30:32 You know the sense of giving back do you receive something in return the friendships the comfort knowing there are people there who understand and don't treat you special for it and I say don't treat you special in a negative way, but consider you part of the group and being an only child. This is my my family. I've chosen these folks as my best friends in is as my family members. It's it's it's a nice thing when you get to choose your family.

31:06 Well, it's an honor to be your friend and I shared with you earlier. I have been in cancer nursing for 32 years and it's it really is sacred work and I am a better person because of being able to support and be a friend to someone like you thank you. So I owe a lot to you and to the other folks to or

31:36 With you because your your your grace it's just astounding how you the nursing staff and everybody else how you get through a day and still have the compassion of the caring that's a whole nother conversation will come back.