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.

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.

Choices.

Everyone says they want real. They want authentic. I always hear people complaining that social media is a highlight reel and causes us to compare ourselves with one another’s best. When in reality, we never show the double chins, kids screaming, dinner fails, fights caused by miscommunication, piles of laundry, muffin tops, messy living rooms….you know, all the “real stuff.” Wouldn’t it be great if we had a day for this?? I mean just one DAY! Everything else gets a day (I mean, really not sure when that started happening, but we even have National Cat Day. Seriously?). On this day we could all post pictures of our failures, bad hair days, pictures from the worst angles, fights with our loved ones, you get the idea. I seriously think this needs to happen. #reallife

Anyway, today I want to be real. I try my best to be honest and authentic with people, BUT I often don’t tell the whole story of what may be happening-as to avoid over sharing or just saving face (Hey, I’m a southern girl, we are the BEST at this).

Today I’m avoiding. Actually I’ve been avoiding for several weeks. After chemo and radiation, I found myself not knowing what to do in the day to day. For two months, my job was to get out of bed and go to treatment, take my medication, and drink ALL of my water. That was what I was to do. I knew I needed to go to bed at a decent hour because the next morning, I had to get up and make sure there was time to eat breakfast/have coffee and drink enough water before my radiation appointment. I found myself looking forward to going to the cancer center every day. I live alone and it gets lonely. I have amazing friends who were constantly in touch, but it was hard and still is. Going to the Center was awesome because not only did I get to socialize, everyone there understood me. I didn’t have to explain that my hair was oily because I could not bear the thought of washing it-getting out of bed was all I could do that day. I didn’t have to explain anything because cancer was everywhere and it felt like home.

Port Surgery

Last day of chemo

Radiation Crew for Internal/External Treatments

Now, I am done and hopefully forever. While most people would be looking forward to going back to work in a couple of weeks, I am a teacher and summer break starts in a few days. I am so happy that means that I get paid and really do get a significant time to recover. However, I am struggling. The day to day is hard. Finding purpose is hard. I have started back running, but man….it is a challenge and totally sucks right now. I keep at it, because I want to get back to the fitness level I was before all of this crashed into my life. I want to hang out with people, but at the same time I get so frustrated sometimes, even with those close to me. I want to talk about cancer all the time, but I never want to talk about cancer. (Makes so much sense, right?) I start feeling like no one understands and I begin to withdraw. People don’t understand that just because treatment is done, that I am not fine. Am I alive?? Yes. But y’all let me tell you what dealing with the aftermath of a cervical cancer diagnosis looks like: it looks like dealing with radiation side effects that I will live with including but not limited to infertility, fatigue so great that you have to fight  your way through normal activities, guilt and joy of having hair, guilt and joy that your treatment seemed to work, having a renewed sense of joy for life BUT being seriously paralyzed from the trauma you just went through, and of course the lingering sting of having cervical cancer and the scarlet “A” that comes with it.

So, if I am being real-like everyone wants, I struggle with avoiding. A very practical example: The hospital bills have started to pile up (literal piles)and I need to start writing checks, look at money for the next couple of months, and get started on those. BUT I avoid. It's overwhelming-the pile is overwhelming, the financial end is overwhelming. In my head, I know what to do. BUT I avoid.

And avoiding makes me feel guilty.

So, I am choosing to consciously make choices that are good for me, in hopes that those will spill over into other tasks-like not procrastinating medical bills. The running is good for me. Making myself go to lunch with friends, is good for me. Eating healthy is good for me. Stretching out weekly errands so there is somewhere to go every day and continuing to see my wonderfully awesome counselor, Tiffany. These are good things, that are helpful and make a difference. 

First post treatment run. Hardest run of my life.

But see, I have to choose these things. I have to constantly be aware and choose the best thing, even if it sucks. I think we always have to choose, it’s just some seasons are so great we don’t even have to think about it. It’s second nature to look at something, acknowledge its difficulty, and tackle it. And some seasons are so hard that we are aware of every choice, every breath, every move. If I’m real, I mess up a lot and don’t choose the best thing, BUT I’m learning to have grace with myself-like I do with people I love and care about. I’m learning to talk to myself like someone I love. I’m learning that I am enough-even when I’m not. I’m choosing to see the cup half full and embrace the new normal after cancer. I’m getting to know this new girl. Me.