Hodgkin's Disease Videos - Keisha P McKinney

Hodgkin's Lymphoma Survivor Keisha P

Watch as Keisha M takes us through her journey with hodgkin's disease.

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Video Transcription


I was diagnosed with Hodgkin's lymphoma in 2008. I was 24 and really in a lot of ways had just begun life.I had moved into a career that I really liked and was settling in to life. I had great friends, a great church, and life was just moving along just like I really expected my mid twenties to be. And I was at a play one night with some friends of mine and halfway through the play, kind of right about intermission, my neck started hurting and I just noticed that it was really sore. And there was a girl with me and so I looked at her and said "Is something wrong with my neck?" and I reached up to my neck and my neck filled my hand. And of course, it felt like it was as big as a softball. Not necessarily did it look like that but I could tell by the concern in her eye that definitely it was big enough that it looked swollen. She confirmed that something was wrong so, I had to go through the rest of the play and put it out of my mind. And really we were sitting in a weird spot in the auditorium so I just thought it was related to that and afterwards I went in the bathroom and I looked and it was pretty obvious my neck was swollen on that left side. And I just put it out of my mind. It was late. There wasn't really anything I could do about it. My boss at the time was a physician and so I knew I'd need to look the next morning when I got to work and so that's what I did. The next day I went to work and went and saw him and I just said, "Hey, you know, is this normal? What do you think this might be?" and he looked at it and mashed around on it a little bit and confirmed that it was probably something. It could have been lots of different things he said and so, he gave me two options. He said I could go get a scan or I could wait a couple weeks and see if it went down, see if it was just something that had moved around and caused fluid to back up or something like that. So I asked him, "What would you do?" I always felt like in this whole process for me, I looked the doctor in the face and just said, "What would you do whether it was you or your kid or your spouse? What would you do?" And he said, "If it were me, for peace of mind I'd go have a scan". So I had some things to do at work that day and that's kind of how I am. We had a- a visitor in my office that day and I was supposed to host them and so I just wanted to do what I was supposed to do and he confirmed that it wouldn't make a difference whether I scanned at ten in the morning or in the afternoon. So I put it off and waited until that afternoon to go scan and even then didn't really think anything. The technician wasn't concerned by anything they said. No one really showed concern in a way of being animated and upset so I didn't know to do anything different. So I just waited. I kept myself busy that night with some things and the doctor called me and just said, "Hey, you want to come to my office and I'll show you what's going on?" and still even then didn't really think anything about it. He didn't really have a heightened alert in his voice or anything like that and that's definitely something I can look back and be super grateful for, just really caring doctors that were calm and knew that their reaction to the situation would affect my reaction. I am super grateful for doctors like that. And so he began showing me some things on the screen of his computer, of course, knowing that to my naked eye they didn't really mean a lot until he scanned down to a section of my neck and I could see something different. He just explained that there was a mass in my neck and the air left the room and I think that's okay. I think it's natural. You see, I had lost a grandmother to cancer when I was seven and I'd lost a grandfather when I was in high school and have friends and family and so I knew what a mass meant and to me. A mass meant tumor and a tumor meant cancer and cancer is just bad. And that's kind of just what went through my mind. I feel like that was supernatural that my brain went that way and I think that's okay, but he just kind of stopped. I think he saw my reaction and he just stopped and he just stood there, and he gave me a hug and told me at the moment that we were going to get through this and that it was going to be okay and that we didn't have all the answers at that moment but we'd get 'em and we'd know what to do. And I think I could say in that moment really I stopped thinking. I stopped, not necessarily being worried but just being concerned, and I realized that until there were answers and until there was something, there really just wasn't any reason to fret until that moment. And so I swapped from being a planner to switching into a moment-by-moment situation. Later that day I scanned again. They wanted to do a full-body scan and really try to figure it all out and what was going on. So there began a waiting game. Really the way that I was diagnosed with everything was through scans, and they were CT scans at first. It was spring break the week that I was diagnosed was spring break week, and so you can imagine how doctors' offices were closed or were low staffed or things like that. I really had some great people kind of step in on me - people that were just in my life at church, at work that were connected to the medical community, and they told me who my doctor would be, told me what the process would be and got so many things rolling that I didn't know I needed to happen but that they knew because they had been there. And so I was just super grateful to be in the right place at the right time, really not even knowing that I was in the right place at the right time, but I feel like in a lot of ways for me that faith is what got me through every step of this and I have to believe that it was God's divine intervention that certain people were surrounding me at that moment. That my boss was who my boss was, that his boss was who his boss was, and his wife happened to be an oncology nurse and was just connected to one of the leading physicians in the state. A call was made on my behalf in the evening to his home and I became his patient literally through a phone call and I am just grateful that those moments came together the way they did. I knew they did those pathology reports, and as I sat and waited, I just knew that it was a mass in my lymph nodes, that there were several lymph nodes engaged in this cancer process, but that it wasn't as bad as it could be. It's really funny. You find yourself in these moments when you're clinging for comfort and those around you are clinging to give you something. You know, one of the first things they said to me was "Well, you have a good cancer" and I remember thinking, “a good cancer, cancer is not good in any way, shape or form”, but it was a ‘good cancer’. And it was a treatable cancer. It was a common form of Hodgkin's lymphoma. My cancer was called nodular sclerosing Hodgkin's lymphoma and what that meant was that there were multiple nodes involved and that they kind of around themselves would be involved. So that's what that nodular sclerosing part meant. And then Hodgkin's is very common among those in their late teens and early twenties so I was probably on the high end of the age spectrum for that. But the fact that it was common, the fact that it was very treatable, the fact that I was at stage II and stage IIA meant that really nothing was below my waist. I had no lower organs involved, and that made a difference in how quickly I could be treated.

American Cancer Society

During my journey I was fortunate enough to take advantage of a program called Look Good, Feel Better, and there was a room at the local hospital that I was taking treatment at and they called it the wig room and someone just told me about this program and that it was free. I think it actually was even resourced through a social worker there at my doctor's office and she said, "Hey, you know that losing your hair may be part of this process, and so this is a free program that's here if you want to go check it out." I didn't even know at the time that it was the American Cancer Society who had provided that. I just knew it was free and really didn't ask a lot of questions. There's so much that you deal with when you're going through treatment that costs money and it's bills on top of bills, and so when something like that that was something I needed was offered for free it just went out of my mind that I wouldn't even want to go take advantage of that. So I actually planned a day with some friends of mine, my coworkers, and we went up there together. This sweet lady met us and she was just a volunteer who was just there to do things. So she met us and walked through what I needed to do to pick out a wig and then just let us have some fun. I'm grateful for that moment because it was how some of us worked through that together and, we tried on wigs, the boys, the girls; we all did. We named them different things that, in the end she worked with us and we found the one that made me look like me. I actually didn't lose all of my hair. My hair really thinned, and so I didn't have to wear my wig much, but I was so grateful to have it, and I was so grateful that I didn't have to qualify to get it. I didn't have to answer a bunch of questions to get it; I could just have it and that was okay. I really appreciated that it was just there, and I didn't really know to anticipate until I was in the middle of it. It was free, and now that I know that it was part of the American Cancer Society I just think about all of those volunteers that do things throughout the year to raise money, the staff that work so hard to make sure that those resources are connected with local physician offices and they don't even know me. They didn't know who I was but they knew that at some point the need would arise for someone. It was there to meet a need that came up right when I needed it. Another American Cancer Society resource I was able to take advantage of was the web site Cancer.org. So many times in this process you want information, you don't know where to get it, you read a brochure over going on the internet because you're scared of what people might put out there, but to have a trusted place like Cancer.org to go to is super helpful. I can tell you my family was 300 miles away from me. My parents I'm sure were wanting answers. They knew they couldn't ask me because I didn't know them. And so Cancer.org also gave them a trusted place to go, look and see what happens when your daughter is diagnosed with cancer, how do you be a caregiver, what questions do you need to ask and make sure they're asking. So it became really a great trusted resource. It's something they could check when they were at work, they could check in the afternoon, they could check in the middle of the night whenever they have questions and just found really valuable resources that provided answers and ways and places to get information when you're seeking and clamoring to get whatever you can find. Just this week the American Cancer Society released a updated report, and in it was some really exciting news. That since the early '90s the rate of cancer deaths has decreased by 20%, and I think - what an amazing accomplishment for the American Cancer Society. But beyond that - what an amazing accomplishment for these volunteers that have worked for all of these years whether it's Gordy Klatt who started Relay for Life or the volunteers who back in the '40s were going door to door and knocking and collecting quarters and dimes with their children to fund whatever research and whatever educational program they could get out there. But as I looked at that report I looked even further and found out that it translated to 1.2 million lives saved from the early '90s to 2009, and I thought even more what an amazing thing to put a specific number, 1.2 million people. You know, there's 14 million cancer survivors alive today because of the work of the American Cancer Society, because of the work of Relay for Life volunteers, Making Strides Against Breast Cancer volunteers. The Health Initiatives volunteers that connect the services. And I thought wow, what a difference, and then that 2009 stuck out to me and I thought wait a minute, that was the year I celebrated my one-year anniversary of being all clear, and I realized I was part of 1.2 million. I think that is something I could never repay the American Cancer Society for. That is something that I can never say "thank you" enough to those volunteers who were going door-to-door, who were running around a track, who were dreaming bigger dreams than what was being accomplished and made sure that education got out there, made sure that cancer research was a priority among lawmakers and made sure that local communities were affected and touched through programs like Look Good, Feel Better and Reach to Recovery. So for that, I'm forever grateful to the American Cancer Society. I love when I was growing up, my parents were always great to say, "You know, you're one in a million" and now I really am.

Treatment Decisions

When I was diagnosed with Hodgkin’s lymphoma, I was told that it was a very common form of cancer. It was one that a treatment process was known. As long as I kind of fit the standard protocol, then I would be fine. That may mean chemo; it may mean several treatments of chemo. Depending on how I reacted and how the cancer was responding, it might mean some radiation at the end. Honestly, someone early on gave me some advice, and they said, “There’s really no need to go out there and just get on the Internet and start researching.” I am one that likes answers. I’m one that likes to be informed. I think this friend of mine knew that, and so that was why they advised me that way. One of the reasons they said not go out there and research, and get online, and start doing all these things was because they likened it to a resort. If someone really, really loves a vacation trip, then they don’t go out on the Internet and, necessarily, always tell all the great things that happened because they’re still reveling in those moments. And those who have a bad experience are usually the first ones to go out, whether it’s to advise on a hotel resort, or some bad experience they had at a restaurant. So, this friend was really trying to protect me, and told me to be really careful of where I went and where I got answers. Honestly, I remember Googling the word “Hodgkin’s,” to make sure I was spelling it right: if there was a “D” involved, or “G,” and where they went. I remember, in a way, even kind of feeling guilty or scared that I was doing that. I really feel like my friend protected me from a lot of things, knowing my personality. I was grateful that they read me enough, and knew me enough to protect me in that way. When I was diagnosed, my treatment process was kind of told to me. It’s a very standard protocol for treating Hodgkin’s. For me, A, B, V, D. That’s Adriamycin, bleomycin, Valban, and DTIC-- D-T-I-C. Those letters stand for something medical, and we just always preferred to call it “DTIC.” I remember, they just told me that’s what I was going to go through. They prepped me a little bit for what my first day of chemo would be like. There wasn’t really a question of what the treatment would be, because that’s the standard protocol that most people take. My doctor felt like it was the best thing for me. So, I really just trusted him. I trusted that as a leading physician in that oncological field he knew the best thing for me, and he was going to keep my best interests in mind, as he went through that process. If I wasn’t responding, then he would change to something different. But, with it being a treatable kind, I just went with what he put in front of me and trusted that would be the best treatment process.

Side Effects

For me, the process with chemo was pretty routine after I went through it the first time. I didn’t really have many different reactions as I went through each time outside of the fact that you just get more tired, or more weak, as those things build on top of each other. So, I went and did treatment on Thursdays. Someone suggested, just as we were working through with the nurses my routine with my life; and they thought that might work best with an eight-to-five career person, and really needed to stay where I was. I was the director in my department; I needed to be able to be there as much as possible. We chose, instead, to use the weekend as my recovery time. So, I would go to treatment every other Thursday. Thursdays were fine; I would treat in the morning, usually, sometimes have a doctor’s appointment tied to that and then, my mom and sister and I would just shop; nothing like retail therapy to take care of a bad mood, or get you through something. So, we would shop, and hang out. It was really great; I could eat. I didn’t really have problems with eating on that chemo day. Then, on Friday morning, I was usually pretty good. I would get up, and I would take Entima, which was my anti-nausea pill. I did that; I set an alarm, even if I wasn’t getting up early so that it would set in and be ready as I started my day. Then, sometimes, on those Fridays, I would go get my Neulasta shot, to help kick my blood count back out. We had to figure out that, for me, I had to do that every other week; it would kick it too high. If I waited two weeks, it would drop too low, and I couldn’t get a treatment. So, we kind of got that rhythm, and just figured it out. My doctor was willing to work with me on that. So I had that Neulasta shot. Then by noon we’d go have lunch, or do something, and then that afternoon, I just wanted to chill and hang out. I could start feeling myself get tired. For sure, by after dinner, I was just done; I just wanted to lay and sleep. Saturday you could count me out; I was on the couch, in the bed, just somewhere. But it didn’t matter how much I slept, I just wanted to sleep more. That’s just how I got through that day: all day Saturday, I’d just sleep. I’d wake up, and have lunch, or have dinner. But my family would hang out and watch a movie, and I would just sleep on the couch beside them. And then, on Sunday, a lot of it just was kind of getting over the day of a cold is kind of what I felt like. I was tired, of course, as I went on in my process, I was more tired. But I would just get hot if I got up and did stuff, so I just stayed still. Then on Monday I would go back to work. I can’t promise that I was always my best, but I always felt like if I could get up, and get my hair done, and put makeup on, then it was a day I was going to be able to function. So, for a lot of those days, that’s what I did. Then, each day following that, I would just get a little bit stronger, and a little bit stronger. By that next weekend, I was always trying to find myself something to do; sitting around and being still didn’t help anything. I chose to keep myself busy and active and doing things. That just kept me in the fight, and kept my mind busy, and kept me available to- to do things. I would be stronger and stronger as I got to that next Wednesday. Then I would do a treatment again, on that Thursday. For me being tired, being lethargic was my main side effect. I did have chemo-brain; I still like to claim that one whenever possible. But it’s something you can’t really explain; it just happens. It’s proven that it’s there; I cling to that. Just go with it. Sometimes your words don’t come out. Sometimes, the word you’re trying to think of won’t come to your mind; you just forget things. I just kept my pattern of making lists. People around me know what I’m going through, and if they’ve ever been connected to someone with cancer, they know chemo-brain is okay, and it’s there. You just can’t apologize; that’s just what happens, and you’ve got to claim it, and let it be part of who you are and what you’re dealing with.

Preparation for Treatment

Preparing for treatment, whether it was chemotherapy or radiation, really were both just mental processes. Understanding that was kind of some alone and “me” time. I was fortunate that lots of people were around me, throughout my treatment process. But those specific times when I was in chemo, in the big room, I really just found some respite and comfort in routine. So I had a bag, I called it my “chemo bag.” I kept things throughout the week that I’d want to take with me, whether that was a magazine, or some notecards to write on, a snack, a drink, anything like that. I’d just put it in my chemo bag, and I kept it in the same place. I would grab it on our way out the door, and then while I was there, I always sat in the same seat. That way I was around the same people; we were all kind of typically there at the same time. I just found a routine, and that really helped me get through, knowing what I was going to do. I really used those moments to try to make myself better, to take advantage of some sitting still time, and talk to the people around me. It was so relieving and so helpful to talk to these people that you shared this journey with. Sometimes that meant praying, sometimes that meant encouraging. Sometimes, that meant me being encouraged. Sometimes chemo is just a nap time; definitely, as I got through that process and was more and more tired, I just took a nap. And that was okay. The treatment would “beep,” and they would come over and change it. Then I’d take another nap. It was good to find that routine. Even the week of the routine that came in, just preparing and knowing, “Okay, Thursday, I’m going to go to treatment, and then I’ll have this weekend to get over it. And then I’ll go back to my work.” And on those off weekends, I would plan something. I felt better, so chemo weekend, I knew I needed to reserve for me; and then, those off weekends, I would play and do some really fun things with my friends or my family. It really helped me kind of move through my process. Preparing for radiation treatment was a little bit different than the chemo process for me. Radiation was so quick, as far as a process each day; but it was each day. That was so different. I went to chemo every other week. For me, I drove an hour to get to this treatment facility. Thankfully, I was so fortunate that I just had people that were there that drove me to treatment; I cannot ever say that I drove myself to treatment one time. Somebody was always with me. Even if that meant they drove me and left me, and someone else picked me up. It was just really great to have that kind of support system around me. For radiation, I really used that time to just mentally prepare myself, and get through my day. I went early; I would get there like eight o’clock. So, I would do that, and then be able to go on with my day, and carry on with everything else I had planned. But with radiation, it took me longer to get there, get undressed than it did the- the actual radiation process. It was very quick. So, I would just use those moments to mentally prepare myself what was going on. I would just talk through things. Those folks that would drive me were great to listen, and ask questions, and we just talked through some of that. But for me and radiation, it was such a special time because when you’re laying flat on your back, there’s nowhere else to look but up. So I just really, intentionally used those moments. I had to lay so still so they could get that right on the spot. I did have a radiation mask; that was scary at first. Once I saw it and knew what it was, I knew it had holes in it, I knew I could breathe. I knew I was perfectly fine, and that it was helping me be stabilized so that they could do the lifesaving work that they needed to do. When I was laying flat on my back I just closed my eyes, and prayed, and used those moments to prepare my heart and to prepare my mind for the battle that I was going through, the fight of my life. I just had my one-on-one time that made healing and made getting through those moments so much easier.

Other Thoughts

One thing that always comes up is, ‘How did you communicate with people and let them know what was going on with you? I actually started a blog. The weekend that I was diagnosed I was at home and had some of that nervous energy. So I decided that it was already, even that first weekend, becoming really hard to retell the story several times in a row and make sure I was telling the same story, and I was sincere in that. So I decided that weekend to start a blog. I just created it and really didn't have a clue what I was doing or how it worked. Someone just told me, you know, "Hey, here's this thing called Blogspot", and so I went out there and just started a blog. It really became something that was very helpful in that process. It was something that I could tell everything once and people could go there, and far and wide people could read it. People that were curious and wanted to know what was going on but didn't always want to ask, whether that was people on Facebook that you knew or my family in Texas. So it was really one of those things that I would just go out almost once a day and would type what had happened whether it was emotions or actually a surgery process or just a chemo treatment or a doctor's appointment. It became something that was so helpful for me in my process to get out my emotions, to get out details of what had happened, and to do it once and know that lots of people could go and read it. They could read it when they wanted to read it if that was once a week, if that was every day, if that was just popping in from time to time. It was very helpful. It also became a journal. It was an online journal where I could put my feelings out there and in a lot of ways when you're going through the middle of that journey and that process, you don't remember how you're feeling, you don't remember how you reacted. So it gave me a place to get some of that out there and to be able to go back and to relive some of those moments to remember what they were like in a fresh way and to look at them with fresh eyes. It also became a resource. There were some people that were connected to us that were diagnosed after me whether it was my dad sending them there for some of his co-workers or people at church knowing that I had that they would send them, and they could read what I'd gone through or what questions that I find out or what was this ‘port’ thing. It was helpful because once I knew that I was helping someone else, then I really just poured myself into it. That blog really was helpful. It was great to get my feelings out. It was great to communicate to folks and let them know what was going on and they didn't feel like they had to come ask. Because people are curious, they're nosy. They just want to know and help. All of those things were able to be accomplished through this great social media tool and it's something that even now I still keep. I kind of look at it in three parts and that was, during my journey and then after my journey. There are so many things that a survivor goes through, that their family goes through when it's all done, and I was able to process through some of those emotions. Your doctor in that last appointment says, "All right. You're done. Go live life normally", and normal is not the same anymore. It's something new and it's something different that even you don't know what it will be like, and what it'll look like, and so it's been really encouraging to be able to journey through some of that and dark mental days that are heavy and hard to get through, but then some really special lessons that you learn. When you see life differently through the lens of this cancer process. So for me that worked. I think the biggest thing that I learned was just to reach out and let people do what they need to to help you. One of the interesting parts of this process is that people are really curious and want to help and want to know, and so I always treated the process similar to maybe when you lose a loved one, and you go through that process that people feel like there's some magic word that they have to say to you or something specific that they have to do and really just learned and tried to encourage folks in the same way. Just simply saying, "Hey, I'm thinking about you. Is there anything I can do?" Or taking whatever it is that they do well or maybe they do professionally that can help you. I had a friend who works in HR and she just said, "You know, when it comes time to process this with insurance and your flexible spending accounts and taxes and all those things" she said "let me know and II'll help you." And just easing my mind that would even be something I had to be concerned about was really great to know that I had somebody who was going to help me with that. There were so many other parts of that process whether it was meals or just kind of finding this new life after that. I moved a couple months after I finished and of course was not in any kind of physical condition to lift a bunch of things. I just had people come to the rescue to do that. So I think I would encourage you if you're around somebody like that to just know hey, I'm here if you need me means a lot. Shooting them an e-mail, dropping a card in the mail, are all really great encouraging moments. I think once you go through this process you do also learn some creative ways to reach out to other people. And so I think my response and my obedience following this journey for me is to take those lessons that I learned and to convert those into ways that I live differently and things that I do differently to help people and to share my journey. I think being open and honest and reaching out to people and trying to help them is a really great way to take what you've been through and make it something bigger and beyond yourself.

Place of Care

I was fortunate enough to receive care at the Hematology Oncology Center. They’re great. They’re known throughout the region as a great facility. Specifically my oncologist was Dr. Lawrence Mendelsohn. He’s so respected in the medical community, especially among oncologists. I was really, really grateful that he was the one who I was just connected with. I didn’t go seek him; it’s just who my primary care physician connected me with when I started my process. Those folks were great to care for me. I walked in; they knew me by name. In the lab, I’d see those ladies often enough that they called me by name, they commented on my clothes. As a 24-year-old, I was too old to go to a pediatric facility; but yet, younger than most of the other patients in there. So it was always interesting to be a room full of, sometimes, older folks, or business people. You kind of see these faces that become routine and familiar. We all were just there, doing the same thing. I remember a gentleman one day said, “Well, what are you doing in here?” And I said, “Well, unfortunately, I’m in here for the same thing you are.” And that- that was just a fun little bond. He had a gleam in his eye and our families would all sit in that big waiting room together. I really just tried to use my presence among those folks as an opportunity for a smile, to be happy. I was just grateful that they were taking care of me, that I had a good prognosis, and that really, I was going through a process. That made all the difference: that those folks were there to just walk through that with me, to consistently care for me, and to provide not just medical attention, but to care about my spirit, too.

Persevering Through Treatment

For me, getting through treatment, whether it was chemotherapy or radiation, or just the cancer journey, itself, was all a mental process. I was so fortunate to have friends, to have co-workers, to have family that were all supportive. Really I can tell you: there’s so many days that I didn’t know how to think of needs because they were met before they were there. There were so many days that I woke up too tired to even pray for myself; yet, I knew that my day had been uplifted and was ready. So I can strategically tell you: there was a group of women at church that just planned great things, or very thoughtful ahead of time needs. They had food at my house, planned a surprise birthday for me. all those kinds of things that uplifted me. One very special friend always did “Treat Tuesday.” That was a really creative way that I felt like she found a way to meet a need for me. Some days it was a Sonic drink, some days it was homemade chocolate-chip cookies, some days it was nail polish for treatment that week, magazines, candy bars, just some little something. It wasn’t extravagant every time, but it was consistent. I kind of got up on Tuesdays knowing that sometime during that day a surprise was just going to show up. She was great even when she was on vacation that summer she had someone else come through and make sure that need was met. So that was a really creative way that she took care of me. I had other friends who just made sure I had something to do. They made sure I wasn’t alone, whether it was watching “American Idol”; whether it was cooking together, whether it was going to a movie, concert, last-minute flight to a college World Series game. Just lots of things where my friends didn’t let me be alone. I also will say: I think a great healing process for my friends and I was that we were all pretty transparent with each other. I shared my struggles with them, whether it was a mental thing I was trying to get through, or a fear I had, or a concern, or if I’d got news I didn’t want, a the doctor, or something hit me at a weird time. My friends just listened and didn’t feel like they had to have magic words, or didn’t feel like they had to fix it. They just listened. I think if I look back on this process of things I learned, it would definitely be that you don’t have somebody; you just need to be present and available, and willing to listen if they need listening to. To come up with some creative way to give them something. One lady made me a pillow that was small. She embroidered it, but it was perfect to fit under my seatbelt so that it didn’t rub on my scar, or my port, when I was going through treatment. Friends who would invite me to go to dinner with their family. Just, in some ways, I felt like I was tagging along; but also, they knew that that time around their kids would just distract me, and give me something to play or to talk. Those were super, super helpful moments for me.

Talking with Family

Telling my family I had cancer was obviously the hardest thing I've had to do. I told my mom the night that I found my neck swollen just told her and she called later that evening to see if it had gone down or anything had changed and it hadn't. So the next morning she, of course, was on me. She doesn't like to put things off and especially when it comes to taking care of myself and so she just asked me, you know, had I gone to the doctor yet and I hadn't. So I told her once I got my scan scheduled and kind of what we were thinking, that we just didn't know what it was they were going to scan, and once I knew something I told her I'd call and that's what I did. I waited until I went back to the hospital and had started that second process for scanning and I just called her and I just said, "Mom, they found a mass and they don't know what it is yet and I'm here at the hospital getting scanned and as soon as I know something I'll be able to share something." And then I just took a big, fat deep breath and let her respond and because she's a mom she did what moms do and just said calming words and told me it'd be okay. We just chose not to react until it was time to react. And.. they were at church so she thankfully took care of telling my dad for me and my sister and we've dealt with cancer before in the family so we just knew it'd be a process of trying to figure out what was in front of us and what to do. As far as telling my friends about me having cancer, I kinda waited until I had more answers. I have some great friends who just fight for each other; if something comes along we stand in the gap. And so I just decided to wait until I had answers because I mean they want them and so really I scanned and did everything like that on a Thursday so not until Friday night or Saturday did I kinda start calling some friends and just letting them know what was going on. And it's kind of funny because there's really nothing else you can say besides, "Hey, how's it going'?" and you do some small talk and then it's like "Well, I have something I want to tell you about." And you just say, "I-- Uh.. Uh.. I think I might have cancer" and there's no easy way to say that to a friend. There's no way to word it differently. There's no way to get around that and you just have to say it and let the air draw out of the room and out of them and then, you say, "Okay. Well, here's what's been going on and here's what I have in front of me and you guys just kind of talk through that." And for me it was calling my two best girlfriends and then calling my college roommates. There were just some people that I wanted to hear it from me before the word got out or something got posted on Facebook or things like that. So I really just strategically thought through who I needed to call and just said, "That call's got to come from me." And so once you make the first call it's not easier, but you kind of know how to talk through that as you get to the next conversation, and some of those people will say, "Well, you know, is there something I could do for you?" and you tell them if there is and sometimes it's "Well, will you make sure that these people know and I'll let you know if I know something else." And it's like anything else you do as a friend. You just walk through moments in life together and it's a moment you'll never forget calling and later it's interesting to talk through what that call was like on their end and knowing how you worked through that moment together.


I love WhatNext. I love that it’s this great social-media resource, and that it’s available to anyone who wants to get on and get involved, and that it’s something you can engage in, and get involved with as much as you want. If you want to go all out and be a part of all these forums, and build your profile, and really spend lots of time there, you could do that. If you just want to come by and check every so often, you could do that. If you want to get an email digest and just see what’s going on, what questions might be out there, you could do that as well. I love that it’s a place that, when you’re wanting answers, you can go and post and ask questions. When you’re wanting to help, you can go and offer advice. It may be, “I have this metallic flavor in my mouth; how do I get rid of it?” Or, “I’m having this complication with my surgery. Did you have this?” Or, “Tomorrow’s my first appointment with my doctor. What do I even begin to ask him?” And on the opposite side of that, whether you’re a caregiver who’s been through it with someone, or an actual survivor, then you can go and give back from this experience you’ve had. What an amazing resource to be able to share the experiences that we’ve had-- good, bad, ugly-- and to be able to provide for someone else an out, save someone else an experience you had. Give them advice, give them tips, things you learned along the way that made such a difference for you. WhatNext provides you a place to do that: to give back, to volunteer, but to then go and have your questions answered. I think one of the really special things that WhatNext is going to allow us to do is explore this term, “survivorship.” You know, as folks are living longer after cancer, there’s a different part of life. We are all changed when we go through this cancer process. So WhatNext gives us a place to explore some of that, to ask those questions of survivor’s guilt, and ten years down the road, what does this look like? It really gives us a great place to explore what it means to be a survivor, whether that’s giving back, whether that’s been emotional things to work through, whether that’s building a relationship and connecting to your caregiver. At what point can you have some of those hard conversations that you wanted to avoid, but now you’re curious, and you want to have the answers too. I love that we can build this personal profile. We can still be anonymous, in a way, even though we’ve got a user name. We can still be anonymous, and ask those tough questions, and explore. It’s almost like an online support group that we’re able to go to when we want to. We’re able to give to it when we want to. It’s just a great, really great resource that we can use, both as caregivers, as professionals in that field, as staff, you’re trying to connect, our volunteers, or survivors with something that can help them. I think it’s really, really great.

What You Wish You Would Have Known

What do I wish I had known before I had gone into this journey? I think it boils down to: you can do it; you can do anything that’s put in front of you. I think until you have to, you just don’t know what you can do. I think just that resonant reminder that it is what it is, and whatever comes in our path, and whatever comes before us, we can do. We don’t do it by ourselves, thankfully. But I can do what I can do. And that it’s okay to ask questions, it’s okay to be your own health advocate. If something doesn’t feel right, it probably isn’t. If you have a question, ask it; it’s okay. Especially in this case, where it’s something that affects so much of your life. It’s okay to want to get an answer, and it’s okay to ask for that answer. I think just knowing that I’m going to make it through, and I can get on the other side of this.