Survivorship and Cancer to 5K

When I became a runner in my mid thirties, suddenly a lot of common metaphors made sense. We are always hearing things like "Run your own race." "Stay the course." "Get to the finish line" These common themes are all throughout historic literature, even the Bible, that liken life to a race and our individual journey, is like that of a runner. One can read these and have a clear understanding of the context and metaphors but unless you have actually run a race, I don't believe you that you can grasp the full picture.

Pre-Cancer

Anyone can run. Well, anyone with legs can run. It's not something only certain people can do. It's like walking only faster. And unless you have a handicap you can walk and if you can walk, you can run. Now before you start sending me PMs about health conditions, bad knees, back issues, etc I know that there are certain challenges for some people and one should always always always get clearance from your doctor. But for the sake of this piece just go with me. Anyone can go out and run or walk a race. However it's a whole other ballgame to train for a race. To submit your entire self to a process and commit to training even when the race is months away, it's raining outside, and you want to binge watch Netflix on your couch instead of getting out there and preparing for race day. Doing that for months is way different than walking a race with a friend who talked you into it the week before. 

This past January I had the opportunity to actually train with a coach for the first time. Prior I had self trained using google, tapping into knowledge from my favorite instructors at the Y, and using an app on my phone. This time, I was able to train with a coach through the Ulman Cancer Fund Cancer to 5k Program. It was exactly what I needed coming out of chemo, external radiation, internal radiation, multiple surgeries including a radical hysterectomy, bladder and vaginal reconstructions, and being diagnosed with chronic condition. I knew I wanted to run again but I didn't know how to start. When I would start on my own, I was too overwhelmed with the physical and emotional challenges of what I had been through. BUT it was one part of my pre-cancer life that I was determined to try and reclaim if at all possible. By submitting myself to an expert authority and trusting the process, I have been able to start running again! And just this month ran my first 5k since healing from reconstruction and being diagnosed with stage 3, acute Chronic Kidney Disease.

Ulman C25K Goal Race

During this race, I kept thinking of all of those life metaphors I was referring to. Before when I ran, I definitely understood the meaning first hand, but just like every other single thing in my life,  cancer shifted this perspective as well.  Cancer has unearthed this inner fighter in me that I had no idea was there. Fighting through treatment is a given, but no one tells you that Survivorship is a fight too. And it never ends. It's what your life looks like after cancer. And we all want to be there right? Like you want to survive and be declared cancer free. Everyone wants that, but no one tells you that your life is going to be turned upside down like a snow globe and you're going to be left to figure it out. And you have to fight. Physically, mentally, emotionally, and spiritually you have to fight for Survivorship. There are parts of your old life that you must let go and resign yourself to the fact that it is no longer. There are other parts that take a while but can be reclaimed with time...for me that's how it's been with running. It certainly doesn't "look" exactly like it did before as I lack stamina and core strength that may or may not get better, but I'm doing it. And it feels great.

Ulman C25K Goal Race

When I'm training or running a race now,  I remember those metaphors and my favorite two are "Run the mile you're in" and "No one can run your race for you." After cancer life and Survivorship is so completely overwhelming at times. There's permanent side effects to manage daily, there's chronic conditions, there's fear of it returning, there's the balance of the desire to live in the now with not wanting to be irresponsible, survivors guilt, I mean the list goes on and on. I for one am learning to take life in bite-size chunks. I make plans and goals but I'm much more calculated in getting there because time is valuable to me. I realize time in this world is limited. I strive to live in the present and run the mile I'm in...enjoy the mile I am in, make the best of the mile I'm in, and if I get to my next mile I'll deal with it when I get there. 

After cancer, I'm also extremely cognizant of the fact that no one can DO life FOR me. This became so real to me during radiation treatments when the radiology techs would put me in my mold, line me up with my tattoos just so, and CLOSE THE DOOR. I was alone. No one could do it for me. They helped me and those first couple of sessions we had some come to Jesus moments, but the bottom line was no one could do it for me. It had to be me, in the room with the radiation by myself. 

Survivorship has also lead me to being a patient advocate. As I make my way around the cancer community I have quickly learned that my cancer, my treatment, my story is different from the next person. It is unique to me. And my Survivorship is unique to me. While there are similarities, how I am able to thrive in Survivorship is not the same as how next person processes and lives what they are left with after cancer. "No one can run my race for me" it's mine to decide how and take action.

A Glimpse of Sunshine

A lot of people don't know this but one year prior to my starting cancer treatment, I was engaged. It's weird to even think of it now, since my entire life before cancer feels like a distant dream most days. But I was. I don't share much about, but it's part of my story that is much bigger than I like to admit. I was engaged and planning my life, babies, wedding venues, photos, all of it. My mind was on all things grey and yellow. I had even planned a doctor's appointment. I think because I'm pretty old school, and that's what my sister did, so did everyone else I knew. It was what I was supposed to do, so I scheduled it along with everything else I was scheduling. The day came around for my appointment and I had to miss it because I was in desperate need of a root canal that could not wait. I rescheduled the well visit for about a month later. It wasn't a big deal to me. I had not kept up with pap tests in recent years but I wasn't sexually active during that time and I felt fine. I had started running several years before, was off of blood pressure medications, my cholesterol was great, and I had never felt better. 

In the month between the original well visit and the rescheduled date, things started to shift with my fiancé. He was under a lot of pressure in his career and we were planning a wedding. Seemed like arguments were happening more frequently and about things that didn't seem argument worthy to me. BUT, as someone who loved him I wanted to validate his feelings and accommodate him best I could. It seemed like within weeks I found myself questioning my entire belief system, who I was as a person, all of my actions, and behavior. I was highly encouraged to flee social media, not spend time with my friends, and to devote myself more to prayer...because my fiancé questioned my salvation and relationship with God (Now let me stop right here and say, who I am now would never allow this to happen, but I was a completely different person then. I did love this man. There were wonderful things about him, and in the spirit of "no one's perfect" I made LOTS of excuses).

I tried to fit into this idea, but it was hard. I was putting in my best effort. Things had started out so good, but I quickly found myself in arguments where the ideas and conversation was so convoluted that I had no idea what we were even talking about. This would make him angrier at me but nine times out of ten, I had no idea what I had done "wrong." I would make excuses like "Well, we are well into adulthood and set in our ways, this must be what it looks like to get married near 40." I remember calling my best friend, who has walked with me since babyhood, and explaining some of the things that were happening. She assured me that I wasn't nuts, but this man had me feeling crazy. He would be so normal, loving, and absolutely amazing one day, and have me in a frenzy the next trying to figure out what I had done to make him so angry and upset. 

Two days before we were supposed to fly out to CA for him to meet my family and for me to meet his mother, things were going well and we were moving forward. We spent the entire day together, and had a wonderful time. The next day he told me that he couldn't go on the trip, claiming we had too much conflict between us. I was so confused and pretty devastated. My sister is the number one person in my life that you have to be able to get along with on some level to be with me, and he was bailing. We had flights, hotel reservations, everything. I was disappointed but thought if he needed space, I would try to respect that and give him what he needed. 

I hardly heard from him the entire trip. My flight returned around midnight Sunday, and upon getting back to my parked car at the airport, the tire was flat. I called him to come help me and he wouldn't answer. I waited, called again, and texted...nothing. It felt like I called a gazillion times while I was waiting on State Farm roadside assistance to come help me. The following morning he called and said he had fallen asleep (this person lives his life on call, he wakes when the phone rings). We chatted about our day and made plans to hang out that evening. By the end of the day, he had called me and told me that he couldn't be engaged to me anymore and that he couldn't even be in a relationship with me because he had made me an idol. He lives 20minutes away and broke our engagement over the phone, and refused to see me or speak to me further about it. 

I felt like such a failure! How could this have happened? I thought I was doing everything the right way this time around. I fell into a pretty dark depression. At the time I was teaching summer school, so I decided to finish out the term and then fly home to South Carolina and get my life together.

The first week I was back in SC, the doctor's office called to confirm my appointment. I had no idea when or if I was going back to Texas to stay, so when they asked about rescheduling again, I just threw out mid September. I thought at least by that time maybe I won't be crying at the drop of a hat and able to get out of the bed without my friend dragging me out and making me eat. 

September came and I was back in Texas. All summer my closest friend and my sister had questioned me about getting an STD test. I laughed at them. I was 36 and had never had one, but I also had only had two sexual partners ever and most of all I FELT FINE! I figured if I had an STD, I would know it...no itching, burning, etc. my periods were fine, but since they were bugging me, when I went for my well visit I asked for an "STD test" when I had the pap portion of my well-visit. 

One week later, the nurse called and told me that my pap test was abnormal and that I needed to see my gynecologist. She also said, "The STD test came back clean except you tested positive for HPV, but it's not a big deal everybody has that one." I was in complete shock that I could have something and not know it. In the following days, I was poked prodded, and cut. I learned a lot about HPV during this time as I went through a series of more pap tests, a colposcopy, and a cone biopsy. Ultimately I landed at The Center for Cancer and Blood Disorders, having a PET Scan and being diagnosed with stage 2b cervical cancer. I would ultimately need chemotherapy, radiation treatments, brachytherapy, and a radical hysterectomy. I would eventually have so many side effects from treatment that I would need a bladder and vaginal reconstruction and be diagnosed with stage 3 renal failure, or Chronic Kidney Disease. 

I look back on that failed relationship and two things stick out to me. One, I was so devastated and confused that someone could claim to love me and ultimately end things the way he did. I grieved the loss of the relationship, and the dream of my life and a family with this person. It was extremely difficult as my heart was deep into the dream of finally building a family and having children. The way in which it had happened was so unsettling and a piece of the whole situation that felt completely unfair. I struggled with letting go of that. He had bailed out and then refused to speak to me. I stand by the fact that it was wrong, BUT after going through cancer I can honestly say, that being dumped by your fiancé with a phone call, is NOTHING in comparison. Cancer is such a perspective shifter, that its really hard to explain to anyone who hasn't had it. The things before cancer that were painful, they were still painful experiences, but it's nothing compared to the loss and fear you experience with cancer. The second thing that I am aware of is that if it had not been for this relationship, I don't think I would have made it in to see the doctor until much later, and by then it would have been a much different situation with my staging and treatment. I may not even be here. My GYN/ONC PA told me the first time I met her, during the oh-so-fun appointment where they go over your entire sexual history ever, that she could tell that talking about things was hard and painful for me. She connected with me in those moments and said, "I don't know why that happened to you and I'm so sorry, but it's exactly what got you in here. Now you have a chance." I will never forget that discussion. It was the first time I had seen a silver lining in that failed relationship. I made it to the doctor because I had been engaged.

Print by Scott Erickson

So this week is a huge week for me. My bestfriend who kept me alive that long summer has been holding on to my engagement ring. See, I had a friend here in Texas, wrap it up and keep it at her house when it all went down. I was such a mess that I didn't want to see it at all much less deal with it. When I decided to go to SC, she handed it to me and said, "Give this to Jill as soon as you land." And I did. Through puffy red eyes and gigantic tears, when Jill picked me up at the airport I gave it to her and haven't seen it since. She and her husband had it appraised, but we didn't really talk about it for a long time. Then when I needed money going through treatment, we discussed it, and she and her husband started looking into the best way to sell it. We would discuss it here and there but I was able to cover the big things financially for a while, and it was just not on my radar. Cancer was my radar. 

Just now, in the last few months I have started to feel better. It's been two years since my diagnosis and three years since my engagement. I have left my career as I can no longer keep up with the pace of teaching, and I am starting to transition into being a patient advocate. I am not at all on top of my finances. Like everyone else I talk to who has had cancer and issues afterwards, I am taking the hit and doing the best I can. It is what it is. BUT this week....my best friend sold my ring!! She even got more for it than we had originally thought! (I mean who really wants an old engagement ring unless it's an heirloom?). I also think this is a great testimony to the fact that sometimes you have to let other people carry things for you. The weight of that ring was too huge for me. I had friends step in and take if from me, so that I could focus on getting better-initially with my emotional health and ultimately with my physical health. Having this ring gone, marks the end of an era. It is FINALLY over. It may seem small but it was a bit of pre-cancer, unfinished business that was just hanging out there.

It's so true that we teach others how to treat us. I will always regret allowing someone to treatment me poorly, but I taught him that was okay. I can't imagine even being in a relationship and allowing certain things now. I laugh sometimes and say "cancer made my balls drop" but it really did. I have emerged as a hell of a fighter and someone who will do things afraid. It's also a fact that cancer takes, steals, and destroys so much. I am not here to tell you all the "good" that comes from it, because the truth is I hate it to the depth of my core, as it has destroyed my life, and robbed me of my dreams. It has stolen two years from me, a career, fertility, bladder and kidney health, even my vagina, and overall well being. I am in the process of rebuilding my life after cancer and chasing new dreams. I am thankful that I am able to catch a glimpse of sunshine after such a devastating storm. 

More YOLO

For as long as I can remember New Year’s Eve has made me sad. When I was little, it felt like the final call of the Christmas Season and a signaling of the inevitable return to school days. As I have gotten older, I think it’s been more of a combination of the end of Christmas mixed with this knot in my gut; this physical reaction to time continuing to pass. It’s always just felt melancholy.  And surely never like a celebration.

I went through a stage of doing resolutions and enjoyed doing that, as much as anyone I guess. I’m not anti-resolutions or choosing a word, or anything like that. I love the idea of starting over, fresh starts, and working towards goals. I really do. However, I have also seen more change in a 365-day time span than many see in five years. Maybe that’s just what happens as you get older. BUT, I look at other people my age and that doesn’t exactly fit the bill. For whatever, it has been my experience and it continues to shape how I view everything, including New Year’s Eve.

One would think that it would perpetuate this feeling of sadness and finality, that I have felt my entire life, but it’s quite the opposite. This is the first year, I can ever remember feeling different. I feel hopeful and excited. It’s not that I don’t realize how quickly time flies, or know and understand that things can change on a dime and be completely different by summer or the end of the year. It’s that I DO. See, it’s about the daily for me and not in some arbitrary way that I have read about in a book and aspire to be. IT REALLY IS my mindset and is taking hold in my decision making.

I’m finally doing things that make me afraid, not in a reckless way, but in a “today is all I’ve got” way. I have joked about “YOLO” being my word of the year. You really DO only live once, so why would you not go for all that you’ve wanted? Yeah, you might fall. If you do, it will suck, but get up and do it again. It’s not selfish to pursue dreams and follow your passions. You were created with those passions for a reason. The things that excite you, excite you for a reason. I want to do more of those things. That’s what I’m resolving to do. More of THAT.

Not Who You Are

I have decided that I really hate that from the time they are about four years old, we start asking children, “What do you want to be when you go grow up?” I think it is wonderful to have goals and to start instilling goal setting in children, early on.  I’m not advocating that we don’t have these conversations, but, I’m starting to think we have our approach all wrong. When we ask a child or young person, “What do you want to be?” it completely minimized and negates who they ARE. It takes who they are in that moment and indirectly says to them; What you are isn’t enough, and you need to be more. Think about it. Our entire culture is set up this way. We ask young children what they want to be. Then we ask teenagers what they want to be, and have they thought about what they want to study. By college we start asking what someone’s major is and if they are thinking about grad school, and THEN you start finding yourself at bars and parties and what do we ask, “So, what do you do?” I guess what I’m getting at, is that our culture is set up so, that our very identity is wrapped up in our careers.

It took me a while to figure out what I want “to be.” I didn’t have the traditional 4 years of college and then off to a career or grad school. I moved to Texas after my sophomore year of college to explore being in another state and to do a job that I loved. I did that job for a while before starting the path of finishing my degree. By that time, I had been working with children and families for several years and wanted nothing more than to be a teacher. It all sounds easy, but also by this time I was no longer on my mom and dad’s bill, so working and finishing my degree was actually really hard. BUT, I wanted nothing more than to be a teacher! At one time, toward the end, I was working 4 jobs and going to school to make it work.

I loved being a teacher. It combined my interests and gifts, and it was truly my dream job. I had worked so hard to get there and then there I was. Because of the sacrifices I made to make, it always felt even more valuable. I prided myself in the fact that I went for what I wanted, and the late nights and early mornings of having 3 or 4 jobs at any given time, had paid off. Teaching on Dallas’ southside and then teaching ESL in east Arlington was my dream and I was doing it. I was a TEACHER and when people asked me, “What do you do?” I was so proud to tell them.

In January of 2016, I was diagnosed with cancer. I had planned to work through treatment, but as it would turn out teaching 4-year olds and having to miss random days, find subs, come back to the mess of a sub, and a classroom of kids who were off their routine, never knowing if Ms. Lawson would be there or a random substitute, made it EXTREMELY difficult to work through treatment. It was the only time in my life that I WISHED I had, had a desk job. I went out on medical leave and I remember feeling so lost. It became spring and I LOVED teaching our spring units. It was so hard to not be in a classroom. Little did I know that would be the beginning of a very long and treacherous two years of chemotherapy, radiation, multiple surgeries, and the diagnosis of a chronic condition.  

Two school years later, I had missed more time than I worked. I had just been diagnosed with a CKD, brought on by chemo and a bladder reconstruction, on TOP OF the fact that I had just gotten through two years of emotional and physical distress. To be extremely honest, I was a terrible mess, but I wanted nothing more than to go back to teaching because it was WHO I was. It’s what I had worked so hard to do. It was ME.

I went back and it was nightmare. This post isn’t about that, so I’m not going to go into how difficult and hard it was, but I WILL tell you that making the decision to leave it behind was a struggle. And the reason it was so hard, even after all I had been through, was because my identity and who I am was so wrapped up in being a teacher. I have been gone now for a few months and it is still difficult, but I’m learning that who I am as a person and what I have to offer this world is not wrapped up in a job title.

See, I have a lot to offer outside of an elementary classroom. Those gifts that I have to be a rockin’ teacher, can be used in other areas of life. My interests and talents are not boxed in to a certain job position, but are transient and can be used in a variety of jobs and career choices! It was tough making the decision to leave and I continue to work through and process emotions. However, just like my cancer story, I’m not sure that I would change any of it. You see, it’s teaching me that I am more than what I have thought for many years. I am more than my job and no job defines who I am.

I had my first challenge with this on Friday night. My partner and I went to his office Christmas Party. I’ll be honest, I had mixed feelings because while I was excited to have a reason to dress up, I am also chronically fatigued and getting over shingles (thanks cancer immune system). I started getting ready for this 7pm party at 2 in the afternoon because it takes so long, and I knew that I would spend the rest of the weekend in bed getting over it. And I did.
Somewhere between unearthing some eyeshadow and finding a dress I still fit in, I started to feel a panic.

My brain: I don’t know any of these people. A few of the higher ups in his company know what’s going on with me, because he needs to adjust his schedule sometimes for my appointments and such. BUT for the most part this is going to be cocktail hour and dinner with people I do not know. Great. They’re probably going to ask me what I do. Maybe I should tell them I had cancer and now I’m a mess-that would actually be kind of funny to watch someone’s face if I said that. I should tell them about the 4 months I was in Depends. That would be hilarious. No but seriously, you need to have an answer. They WILL ask you.

So I spent the next few hours getting ready, and thinking: What do I tell them? I came up with and rehearsed a few standard lines about how I am a teacher, but I’m taking some time off from that to explore some other opportunities. After all, someone did tell me once (since I like to talk A LOT); “Holly, if someone asks you what time it is, you don’t have tell them how the clock was made.”  How true that is.

 Sure enough, I made it through about an hour before the question came up. When it did, I responded, “I taught for almost 10 years, but just left this school year to explore some other opportunities.” The guy nodded and said, “Oh, what other things are you considering?” SHIT! I didn’t really think much about follow up questions! I thought for a few seconds and responded, “Well, a couple of years ago I went through a cancer diagnosis and while I love teaching, it’s not really a good fit for me anymore. There’s a nonprofit that helped me through my cancer diagnosis and I’m devoting a lot of time and effort there. It makes me happy and I want to do what makes me happy.” I was ready to move on after that, but he moved his head back in shock and said, “Wow! I’ve never heard anyone say that before.” I said, “Yeah, it’s been a process and there are sacrifices that have been made, but at the end of the day and at the beginning of the day, I’m happy. I want to enjoy each day that I have. When the sun comes up, I want to look forward to what’s ahead. And now I do.” He was astounded and told me how much he admired that I had the courage and strength to do that and how he wishes he had more of it. We talked for a bit about how cancer had changed my life perspective and how bad things are often redeemed, on the other end.  I chatted for little while and then it was off to mingle with someone else. Before I moved on, he commended me again and reiterated that he had never met someone like me. Later I found out he is over my partner’s entire region. I was talking to a big wig and didn’t know. Kind of funny. But kind of great. Great because, yeah, I knew what company he worked for but in that conversation, it didn’t matter what his job title was. And for me, I was just me. In that conversation we were just two people talking. Two people connecting and chatting about world views. He was him and I was me. That is all.

Maybe some of you are reading this and thinking this is all some hokey BS and that’s fine. But I think I’m on to something and perhaps we would better serve our children by nurturing who they are as people and helping that flourish rather than constantly asking, "What do you want to be?' If a little boy wants to be a fire fighter, that is great. Let's speak to him about what courage and sacrifice look like and nurture and grow those things in him. Tell him when you see that in him, give that language, and help him flourish in those principles. As it is, our culture is so entrenched and set up to define us by our careers, and anything else that is tangible. I see it every day in the cancer community; someone having an identity crisis because they can’t--just fill in the blank. I struggle with it in other areas too, running and teaching being my main ones. But we are not those things and we are are not our careers, jobs, even roles in our family, etc. Those things are wonderful, and yes that is the go-to answer at a party. I am not knocking having goals, being good at your job, or any of that. BUT at the end of the day-if that was stripped from you-who would you be? Cancer forced me to answer that question. My hope is that it wouldn't take some devastation to help you answer: WHO would you be? Because THAT is who YOU REALLY ARE.

Post Party Pic. We were so tired, but glad we went.

Jillian

It’s my first loss since becoming an advocate. I knew in June when I got there, that this was me beginning to walk in purpose and that it was going to come at a cost. So many amazing women-at different places in their journey. Some 10 years out, some 10 months out. Some in the midst. Some returning to treatment, many struggling with side effects, and several living with it. Day in and day out, accepting that it will eventually take them but not today. Ladies so alive, stepping out in strength, to share their story so that we can eradicate this ugly awful thing that has derailed us, stolen from us, but made us stronger.

The cancer community is so interesting to me, because cancer does not discriminate. When you walk into the chemo room, it’s raw humanity. All races, genders, socio-economic levels, all in a fight to live. In its own way, it’s a beautiful picture of the human spirit. What I have found is that cancer brings out who you really are. It either makes you bitter, ugly, and angry or it becomes a chrysalis where you transform into this beautiful creation with this ability to love well and see beauty that others cannot.

The advocacy community is full of people who want their cancer experience to mean something. People who live on purpose and seek to share their stories, so there will be less stories. Advocacy costs. It means that you don’t put your cancer in a box and never think about it. It means you’re actively taking it OUT of the box on a regular basis. You’re talking about things that are hard, things that you yourself are still mourning, struggling with, afraid of, and wish never even happened. You are making yourself vulnerable in hopes that others will hear and just maybe that one person will take action. You are walking into hard spaces, where people are still being treated and dealing with life altering side effects that you’re still processing yourself. You are meeting amazing fighters and letting them know that you don’t have all the answers but that they are not alone. These fighters become your tribe. They become your family. And when you meet one, you know it. You know it because their spirit permeates the air and it’s like looking in a mirror.

I “met” Jillian online back in the spring. I had seen this amazing photo of her on the Cervivor page, where she was showing her scars and ostomy bag. At the time I wasn’t sure if I was going to be able to keep my bladder. I was preparing for the worst but hoping for the best. I found her story online and there were similarities. Same stage, SO MANY bladder and kidney problems. I found her on Facebook and reached out to ask questions, as I did with a couple of the other Cervivors who I found with severe radiation damage. Much to my surprise at the time, when I reached out to these women, they actually reached back. Wow. These women and their stories made their way into my mind and heart. I felt stronger for speaking with them. I felt like whatever was next for me, I could do it. They were living so bravely and if they could it, so could I.

Jillian used humor and I was so relieved. So many of our post treatment issues, with cervical cancer, revolve around pee, poop, butts, and vaginas….I had personally found humor but Jillian was the first one to break the ice with me there and make me feel like it was okay to be scared and to laugh at the same time. She had such a balance of honesty and humor. She made me feel normal and like whatever was coming my way, that it didn’t mean my life was over. I could live and thrive with a bag, if that was going to keep cancer out of my body.

Her interaction with me in those moments, meant the world to me. It was Cervivors like Jillian, who drew me into this community. Her spirit and strength will live on, in so many ways-in her boys and those closest to her. For me, I will take her kindness, laced with humor.  I will throw the life line to other Cervivors out there, letting them know they are not alone.  She made a difference in my journey, and I will share my story, and share my story, and share my story, until I have no breath. Until there are no more Jillians. I will walk in this purpose. I have counted the cost and will continue to walk with a vengeance. 

By the time Cervivor School came around, I was well enough to go but she wasn’t able to make it. After a message about watching the poop come out of her bag (I’m telling you this was woman was so funny!), she told me “don’t worry, we’ll meet soon.” I knew she was sick and I knew that it was not looking good.

I got a message from her in July. It was a poem that had been circulating that was written by a young girl with terminal cancer, in a New York hospital.  For me, I have gone back and read it many times since. Little did Jillian know that I was still struggling and needed this to push me, to live my best life after cancer:

SLOW DANCE

Have you ever watched kids on a merry-go-round? Or listened to the rain slapping on the ground? Ever followed a butterfly's erratic flight? Or gazed at the sun into the fading night? You better slow down. Don't dance so fast. Time is short. The music won't last. Do you run through each day on the fly? When you ask, “How are you?” Do you hear the reply? When the day is done, do you lie in your bed, with the next hundred chores running through your head? You'd better slow down Don't dance so fast. Time is short The music won't last. Ever told your child, We'll do it tomorrow? And in your haste, Not see his sorrow? Ever lost touch, let a good friendship die Cause you never had time To call and say,'Hi' You'd better slow down. Don't dance so fast. Time is short. The music won't last.. When you run so fast to get somewhere, You miss half the fun of getting there. When you worry and hurry through your day, It is like an unopened gift.... Thrown away. Life is not a race. Do take it slower Hear the music Before the song is over.

Read Jillian's Cervivor Story

The Table

As I boarded the plane, I could feel it. The excitement of MONTHS, almost a YEAR of waiting was coming to an end. I knew that I was about to have an experience of a lifetime and deep down, I knew my life would never be the same. I had virtually met many of the ladies I was about to spend the weekend with, but only one of them had I met in person. I was nervous but the good kind of nervous. After switching planes for my final destination, I got settled in my window seat and put on my headphones. I had my Wonder Woman headphones, which seemed apropos given my last year and where I was headed. I tried to just relax, as I knew the flight was short and the weekend was about to be busy. As I leaned back in my seat, I took a deep breath.  I kept seeing the faces of friends I was about to meet and anticipating the news ones. How did I even get here? Was this really about to happen?

I suddenly became really emotional. I had already cried reading all the posts from other Cervivors headed to Florida and the ones who were too sick to make it. I didn’t expect to feel this way. I had gone back to work from my bladder/vaginal surgery only three weeks prior and had been so busy working. Sleeping. Working. Sleeping. That was pretty much what my body could handle and I had just allowed myself to compartmentalize, to get through the very next thing. Suddenly, the very next thing was Cervivor School.

I had accidentally fallen into advocacy during treatment, and accidentally found myself among this amazing group of women who were just like me. Normal women-with cervical cancer. This group that was committed to sharing stories so that there would eventually not be women like us. How could it be that I had even had cervical cancer, met these women through a hashtag, and was now on a plane to go sit with them for three days? The thing that had almost killed me, had torn my life apart, destroyed my body, the thing I feared daily, the thing I wanted to forget-THAT is what I was getting ready to talk about and share for the weekend.

I cried. I cried because I was tired. I cried because I was excited. I cried because part of me wants to forget, but I know I never can. I cried because there were friends I knew wouldn’t be there because they were too sick. I just cried. And when I was done, I felt better. I felt ready.

Cervivor School was complete freedom for me. I didn’t have to explain to anyone how I felt because they all felt the same way. They felt like me and they wanted to MAKE A DIFFERENCE! All of us had different stories, but all of us wanted our stories to matter. Each of us had the desire to learn as much as we could from experts and one another, so that other people wouldn’t have to experience what we have gone through. That alone was a powerful thing to witness. (Plus, it was awesome to spend time at the pool and not worry about your body because most everyone there had bulges in the same places due to surgeries and treatment. SO FREEING)!

I could not have had this experience without the help of many people. A lot of them have asked me about my experience, and like any life changing experience it’s hard to sum it up in a few sentences. I like to sum it up with, I found my “me too” people. I found my forever tribe. I found this sisterhood that I had felt online, but became about a bazillion times stronger in person.

I have this image in my head now that is always there, because the table is always there. Always ready. The image of amazing warrior women, from around the world, sitting at a table. An image of women at varying stages of this war we are waging against cervical cancer and HPV. It’s a personal war. We are in our own fight for life, but we link arms to fight for women everywhere. We come to this table to rest, to renew, to fill up, to learn new battle strategies. We come for comfort and we come for the peace in knowing we are not alone. It's always there and in a sense, we never leave.

Embracing Me

This body. I have struggled with it most of my life. I’m not sure WHY I have always felt that it’s not good enough, but I have. I was a chubby kid and always felt like I was bigger than everyone else my age. I remember feeling like I wasn’t like everyone else, from a young age; that I was different.

By high school, I had lost weight but I was starving most of the time. I would go hungry because it worked. I know now how unhealthy it was to be eating so little, but at the time it seemed like a good idea.

Fast forward to my late teens/early twenties, and my immediate family went through some hard things. In addition to that, while I was away at college my sister moved to California, and I fell into a depression and pretty much ate all of my feelings. I had never developed a healthy relationship with food, so it was definitely where I went for comfort and relief.

It took many years of struggling with this, to FINALLY develop a balanced relationship with food. I started running in 2012, and it completely changed my outlook on everything. First of all, I started to love my body because I realized it was capable of doing really hard things. Running is hard, especially when you’re overweight. Developing this habit helped me to manage my weight, stress, and anxiety. Naturally, that lead to a healthier relationship with food. I wasn’t depressed, I believed in myself, and didn’t feel anxious. Oddly enough, this lead to me eating what I actually needed, versus what I needed AND what I wanted to make myself feel better. My body changed. It wasn’t skinny but it was strong and healthy.  For the first time in my life, I felt good about myself and the choices I was making. I didn’t avoid cameras or full body shots,  I enjoyed shopping for clothes, I was signing up for races, I was faithful to my lifting class at the Y, I had energy, I was able to eat cake and not feel bad. I felt like I had achieved balance.

Backpacking on the Appalachian Trail

Completing my first half marathon

January 2016, I was diagnosed with Stage 2B adenocarcinoma of the cervix. I had cervical cancer and was treated with chemotherapy/external radiation/internal radiation. Steroids and drugs put the weight on. I gained 20lbs during treatment. I kept telling myself it was okay because this is what I had to do to LIVE and when it was over, I would jump back into running and get back to normal.

When treatment ended the first part of May, I found myself so fatigued I could barely make it around the block walking. The first time I attempted to run, I was in the bed for 2 days. It wrecked me. I had to adjust and just start moving as I could. Since I wasn’t in treatment, my body was able to tolerate healthier food options and roughage. So, I started trying to focus on my diet. I tried to shift my mindset from “I’m going to start working out hard again” to “I’m really going to try and take this time to focus on diet/nutrition.” I did that. I did that for two months and lost no weight. I remember sitting with my oncologist crying, asking her what the heck was wrong with me because nothing was the same. She is such a straight shooter-I just love her. She looked at me and said, “Holly, your body just went through cancer treatment and you’re in menopause. Nothing is going to work like it used to. It might take months or even years. Doesn’t mean these things are impossible, but you need to cut yourself some major slack.” I cried all the tears, gathered myself,and we scheduled my first PET scan post treatment.

My oncologist’s words, while not what I really wanted to hear, did encourage me. I started trying to have grace with myself and just keep at it. I started seeing some differences in energy level and some very small differences on the scale. I just kept telling myself, that it was fine-slow but to just keep at it, that it would all add up eventually.

By the first part of August, I had my first PET scan which showed cancer was still in my cervix. Due to inflammation, my oncologist wanted to take some biopsies, to ensure that this was in fact cancer and not just false positives. By mid August, I was starting back to school with my students and having outpatient biopsy surgery that very week. By the end of August, it was confirmed that I still had cancer and I had a date for a radical hysterectomy mid September.

I continued to fight fatigue and stress, but exercised right up until my surgery, as it is one of the only things I have found that helps me deal with anxiety and depression.

After my hysterectomy, I struggled with energy and pain. Having surgery post radiation, comes with lots of fun things, like longer recovery periods. About two months after surgery, I started back walking and going to yoga classes. I felt like a stranger in my body though. My hysterectomy was laproscopic, so that was good as far as incisions go-but my abdominal muscles were shot. I had never carried weight in my belly before, but suddenly I felt like I was carrying so much more in the front, in addition to my hips. I was fighting fatigue, stress about cancer, and feeling so bad about myself. I constantly fought  myself in my mind- I went back and forth with “I’m so happy to be alive and not have cancer” and “I hate what my body feels and looks like.” Now, if you’ve ever almost died, you know it’s a pretty big deal NOT to, so why in the world was I struggling with body image issues?

Hot yoga-low impact/high intensity

By mid November, I was extremely ill and had developed an abscess in my vaginal cuff. I could barely walk, let alone be active. I was hospitalized and sent home only to have formed a vesicovaginal fistula. Due to the hysterectomy, AFTER radiation, my bladder was fried. A pathway had formed in the bottom of my bladder, into my vagina and I was completely and utterly incontinent. My bladder would hold nothing. Everything went straight through and in the wrong direction. My bladder was hanging out doing nothing until it decided to cramp and spasm, and I started to develop lots of vaginal irritation and external irritation, as I was forced to wear adult diapers until surgery was safe and scheduled.

Initially, I felt myself falling into depression. Just like with my cancer diagnosis, at first I was embarrassed. I was also very scared, as the surgery to correct this issue was going to be risky and may not work-and my urologist and oncologist had started talking about the possibility of cancer being in the bladder wall and the what ifs, if surgery didn’t work. They prepared me for the worst. My mind continued to be this battlefield of “You’re alive, be grateful.” and “Oh my gosh, I hate my body already. It does nothing it used to and now they’re saying I may need a urostomy.” It was constant back and forth.

I stayed at home and barely moved for weeks. I remember being in my chair one afternoon and just saying to myself, “I can’t just sit here. There are people who live and THRIVE with much worse. Get up!” I wish I could say that it was more drastic than that, but it wasn’t. Something just hit me that it really could be worse and if it DID get worse, what was I going to do, sit in that chair for the rest of my life? No.

So, I got up. I talked to my urologist about starting a walk/run program and explained how much being active had helped me manage and cope with anxiety in the past. I basically told him I was going nuts. Ha!  He was so supportive and told me to put on my diaper and run! And I did. I had to go back to work during this time for insurance purposes, so I didn’t do this every day, as working under this health condition was extremely difficult. But I did it when I could and I felt like my body could handle it. This time frame was not magic. I was still struggling with acceptance of where my body had landed after a year of cancer BUT I was doing something that made me feel good inside and that was more helpful than not. It was hard but worth it.

The week before my surgery, I ran a 5K and while I was slow, I did it. It was definitely a milestone for

me.

5k in Depends. Compression wear can be forgiving. It sucks in all the things.

My surgery was March 17. It was supposed to last 4 hours and the plan was to take skin and muscle from my upper thigh to graft into my bladder and vagina, to replace damaged/radiated tissue. I woke up with staples from under my breasts to the top of my pelvic bone. Surgery had been over 7 hours and my bladder was so damaged and the fistula was so large, they had to use an upper abdominal muscle to graft into my bladder. My team again prepared me for the worst, and told me that had done everything humanly possible to save my bladder, but that it was going to be a waiting game.

Since surgery, recovery has been slow. I mean really slow. I had a catheter for 5 weeks, a dressing on the skin donor site on my thigh, and the stomach staples. My abdominal muscles are shot to shit. And now, I have this super nice permanent lump from my muscle graft and this perfectly shaped rectangular scar that is super dark on my upper thigh. I’m also at risk for hernias if I do too much too quickly, since they took my ab muscle, so there’s that. While recovery has been slow, it appears so far, that surgery was successful.

Since my abs have been cut through and moved around-I have this belly. This roly poly belly. Like I’ve always had a roll when I sit, but this is like a two roll special, with this weird separation right down the middle where my scar is. As my weight fluctuates, this roly poly belly can go down BUT the shape of it, is what it is.

March 17 right before the anesthesia

Now, most of you might be thinking after all of THAT you’re here and alive and your bladder works so why are you struggling with what you look like? Are you really that superficial? Honestly, I can’t fully answer that question. I can some and will attempt to here, but I really do think accepting my body has become a process and some days, some moments are better than others.

Before cancer, I had worked so hard to change my mindset toward food and exercise. I enjoyed being active and the balance it helped bring to my life. NOW, I physically cannot work out like I want to or at all. Honestly it all seems very unfair, and I know that sounds whiny. I am heavy and I’m struggling with confidence. Why? I think that somewhere along the way, my confidence became too entrenched in what my body was capable of. Now, don’t misunderstand me. I love that my body is capable of doing hard things-and it gives me internal confidence when I’m able to work hard to accomplish those hard things. BUT what happens when you can’t do that? What happens when you’re just you-the thing looking out of your eyes? The you that makes you, YOU! Are you any less? I’m still the person who worked really hard to lose 60lbs and run half marathons. I’m still the person who was able to get off of a cocktail of medication for hypertension.(and still enjoy this benefit) Am I any less because my body looks different? NO! If I were my friend, talking to me I would tell me about all the strength that I see in who she is and even though she may be bigger, she is mentally stronger now than she EVER was before!! Why don’t we talk to ourselves, like we would talk to our friends? Because we often do not love ourselves the same way.

So, here I am. And even after explaining and coming full circle in that explanation, laying it ALL out for you...I can honestly say it’s a struggle. Some days are better than others. BUT I do feel that this is a process and another layer of my journey that I am going to wrestle with for a while. Maybe a long while. However, with every struggle that I have had, the more I am honest, the more I share, the more I am able to process. AND the more likely it is that someone, somewhere says, “me too!” and THAT makes all the difference.