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.

Real Talk Tuesday

Real talk Tuesday.

In 2012 I started a journey. I worked really hard to not be overweight. I worked really hard to be able to run half marathons, and do a 5k a few times a week to help maintain a healthy weight. I worked really hard to not be the person who made jokes to hide behind being uncomfortable in my body. I worked really hard to gain a balanced mindset of not being completely obsessed with food, yet being mindful of what’s going in and how it’s burned as fuel. I worked really hard to be comfortable in my own skin. Not skinny, but strong. I worked really hard to be physically and mentally strong. I worked hard to not size up a room to see if I was the biggest person there. I worked really hard to not feel judged for treating myself once a week. I worked really hard.

I went from running half marathons to......

Wearing long tops, black leggings, and layers-mostly to hide any leaks from my Depends. Oh and carrying more weight on my body and IN the giant bag with all the Depends and a change of clothes.

Cancer has taken a lot from me. However, I am bound and determined that it will NOT permanently derail the mindset I worked so hard to overcome. I am 37lbs heavier than I was when I first walked into the oncology office. NONE of my old clothes fit. I am heavy and tired. If I’m honest, sometimes I am tempted to give up-to feel sorry for myself and just sit down permanently.

When you think of cancer you think of someone bald, gaunt, and puking. THANKFULLY this was NOT me. Except for the puking. There was some puking but mainly heartburn and constipation from the pit of hell. I got through treatment with minimal weight gain-I mean I was really bloated from medication but felt like it was manageable and that I would be back to myself in no time.

Fast forward to after treatment, I was working really hard to get back to feeling like me again. The fatigue was so intense that it was a constant struggle to stay active and continue normal day to day activities. BUT I started working with an oncology trained nutritionist and making head way learning what was best for my post cancer body.  About the time I started gaining some momentum, I found out I still had cancer and needed surgery. The radical hysterectomy left my hormones jacked up and my body in a state of “woah” it had not had before. THEN, I had the abscess and THEN the fistula developed. Final result...my body is a mess. And guess what? Friday...like three days from now...I have another surgery. My stomach will be opened yet AGAIN and this time my leg is going to be messed up for a while since they are grafting tissue. <sigh>

I know what you’re thinking. You’re thinking what I keep trying to tell myself. YOU ARE ALIVE. All of the above. All of it. It had to happen in order for me to live. However, it doesn’t make it any easier to deal with, when you’re in the midst of this battle for your mind. What I mean by that is that I feel like there is a constant battle for “how” I talk to myself. Yes, I realize that I am alive and here. The last thing I want to do is minimize that miracle. However, if I’m being real-being in my body right now is hard. It doesn’t look or feel the way it did before cancer and menopause. I had never experienced feeling like the vessel I’m in, isn’t me... until now. However, if I really think about it-it is very much me. It is where I am right now. It is what I have right now.

Cancer left me with a vessel that feels broken down, heavy, and tired. It’s going to get a little worse before it gets better, but it’s going to get better. There is a plan forward.

Had to document what I hope to be my last purchase of Depends for a LOOONG time!!

FORWARD!!!

Lessons of Winter

Winter can conjure images of staying warm by a cozy fire, snuggled safely with those you love most. You can also imagine one staggering in the bitter cold, trying to find his way while fighting the elements. I wish I could say that this winter had been one of coziness, where my heart found a relaxing peace, where safety was ensured and my chest was able to breathe a giant sigh of relief. It has actually been the exact opposite. However, what I find to be fascinating is this theme that continues to play itself out in my journey, and that is-the “place” that I seek to find after cancer, this place of relief and safety, it doesn’t exist. It never really did. Since this is an idea, rather than an actual place that we arrive in our lives-how do we sanely carry on?

I went back to work in early November thinking it was the beginning of getting back to myself. 2016 had looked like port surgery, chemotherapy, radiation, five internal radiation treatments, and finally a radical hysterectomy to remove remaining recurrent cancer. Surely, although slow, recovery had begun. I started to denounce the comments of “I bet you’re just ready to get this behind you and get back to normal.” Cancer had been gigantic. Yes, I did want to get it behind me, but I had started to come to terms with there being a “new normal,” as nothing about my body or thought life was “normal” or the way it used to be.

One week into work, I started feeling terrible. I had pain that continued to get worse and the fatigue was so drastic that I was literally bed ridden. After weeks of trying to figure out what was going on, a pelvic CT revealed I had an abscess. I was hospitalized for several days to get the infection under control, and was eventually sent home on IVs and rest. This was a setback, but I was still on my way to recovering.

A day after being home, I started having incontinence issues. SURELY this was not what I thought it was. My OB/GYN oncologist and I had discussed the risk of fistulas from day one of knowing I needed surgery, but I had had both an in office fistula test and a cystogram at the hospital. Both of them were negative. This had to be something else.

Unfortunately, it wasn’t. I went in for an exam and another in office test and my doctor did not even have to complete the test before the fistula presented itself. It was bad. It was large and evident that surgery would the only way to “hopefully” repair the pathway. It was going to be a slow process, since I had been exposed to so much radiation. Rushing me off into surgery was not going to fix this. I was going to have to live with this for a while.

I cried. I cried a lot. I just couldn’t believe this was happening to me. Why? Why wouldn’t cancer and it’s stupid side effects go away? Hadn’t I done everything I was supposed to? Even mentally, hadn’t I done the thing survivors are supposed to do-accept the new normal? Hadn’t I already accepted that I had permanent ringing in my ears from chemo, a damaged vagina, 38 and in menopause, infertility, and that my body had just been through hell and back in order for me to be alive? NOW I was 38 and in Depends too?

The first two weeks of this, I mostly sat. I sat at home waiting for my next round of IVs and in an adult diaper. I didn’t want to do anything or go anywhere. However, soon my body started to feel better. I could tell the drugs were working on the abscess and physically I was feeling good. I was still in a diaper, but I felt better than I had in months. Now what? Here I was better, but still with this GIGANTIC issue and waiting for surgery. I felt like everywhere I turned, it was a fight both physically and mentally. I wrestled a lot with what I was going to do with this. I felt the unfairness of this life and the ugly truth of what cancer and treatment had done to my body.

One day, I can’t pinpoint the exact day, but I remember hearing my oncologist's words in my head, "Holly this happened because I had to perform a surgery to save your life. You still had cancer and without your hysterectomy you would have only lived maybe three more years. You have every right to be mad at this and angry, but you are alive and can get through this or whatever is next." I heard her words, that I hadn't thought about in weeks, and I decided to get up. I had to keep on fighting. I was missing out on life. I was CHOOSING to hold myself back. I couldn’t sit any longer. Was going about normal activities going to be difficult? Sure it was. Was I possibly going to have an accident on myself while shopping? Yep. Was it going to be uncomfortable and somewhat stressful feeling like people could smell me or know I was wearing a diaper? Oh yeah!

But I wanted to LIVE.

I honestly have felt like the past 12 months have been winter-the picture where I am fighting the elements. It has been one thing after another. Fight after fight. This last experience has shown me that there really is no true safe place that we arrive, where life is easy. There will be seasons that are better than others, and I pray that I am on the cusp of one of those. BUT there really is no place that is completely out of the harshness of the elements. Not for anyone. It is a choice that we must make. For me, I am in a season where I must choose life daily. I must choose happiness instead of bitterness, contentment over self pity, the positive over the negative, bravery over fear. Some days, some moments, I fail at this miserably. And when I do, I wipe myself off, dry up the tears(and there are many), and get back up because I am alive. It may be winter, but I want to live.

Craig Sager speaks on choosing hope, seeing his cup half full, and the fight!

*I designed a shirt, to bring awareness to cervical cancer and to help raise money to cover the expenses of this past year and the surgery to come. The campaign is live on Bonfire until February 20th. Check it out!

www.bonfire.com/start-the-conversation/

Leaning into the Storm of Cancer

You may have read them-the “What Not to Say to People with Cancer” articles. I used to skim over them, thinking I was all good. Me? I would NEVER say anything to offend someone with cancer! I am a thoughtful person-I’m the person who won’t even tell someone I’m praying for them unless I can actively remember to do so, so yeah...I was good I didn’t need to read such articles.

WRONG!!

‘Cause guess what? When you’re on the other side and actually HAVE cancer and a gynecological one at that-AND one that is caused by a virus. Guess what? People say some crazy shit. Stuff you would never imagine would cross the lips of someone who is supposed to care about you. Now, as I stated, I see myself as a reasonable person-so most of this crap I worked really hard to brush off and tell myself, “Well, they are well intended. They didn’t mean it the way it sounded.” My counselor even worked with me on phrases to shut people down in person. She encourages me to tell people they are being jerks, but I am still trying to find that voice. Perhaps this is it, through this blog post. I usually just tell myself that people don’t mean it really,  and then later call my absolute closest people to vent or screenshot messages from people and type in all caps to my best friend. I have found lots of articles on this subject, yet when meeting other survivors it is often a main topic of conversation. It’s hard enough having freaking cancer, and managing the feelings of those who are the very closest. Much less managing idiots on the fringe, who think they “have to say something.” Why is that? I think it’s because no one really cares until it’s them or someone they love. Like really love. So if you’re reading this and think you don’t need to, then you’re the exact person who does. If you're gonna lean into this storm, be prepared to be uncomfortable and teachable.

Here are some common mistakes that I have personally experienced MORE than once.

1. If someone you know gets a diagnosis and you find yourself overwhelmed with not knowing what to say-figure that out before opening your mouth. What I mean is, if you’re not comfortable saying something, just wait. That’s okay. You don’t have to say anything right away and perhaps you’re in shock yourself and need sometime to gather your own emotions and thoughts. That is better than getting in front of the person, fumbling, and saying something trite. Survivors are fighting. Really fighting, real things-life and death stuff at any given moment. REAL. We don’t want to hear trite empty sayings-we know to hang in there, we know to keep our head up. Perhaps instead of throwing out a “chicken soup for the soul” comment you could say, “I’m thinking of you.” or “I’m here for you.” or something I personally appreciated was someone acknowledging my pain by saying something like “I’m so sorry you’re having to deal with this. This sucks.” or “I know things are really hard right now, I can’t imagine.” THOSE seem more real and do not minimize the person’s cancer. The prior ones, that are more of a “hang in there” often make the survivor feel like cancer is not a big deal, and that you’re equating it with having a bad week or day. If you are really close with the survivor just being WITH them can make a difference.
2. If someone you know gets a diagnosis of a gynecological cancer or oral cancer that is caused by HPV, they already feel the very real stigma of that. You turning up your nose and saying, “Isn’t that caused by an STD?” Or “Isn’t that preventable?” Yeah, that doesn’t help the survivor, makes them feel shame, guilt, and again minimizes the pain and fear they are feeling with a cancer diagnosis.
3. In my personal case, I had not had a pap in several years. They were a few people who said things like, “WHY?? Oh I bet your oncologist got all over you for that!!” To which I had to say(after picking my jaw up off the floor), “Actually no she didn’t. She encouraged me that I can’t change the past but can change the future. She didn’t shame me for choices I have already made.” Y’all, I would say this was one of the most hurtful. If your friend or loved one missed paps and abnormal cells have grown and she gets a full blown cancer diagnosis, the LAST thing she needs is YOU making her feel guilty for not staying on top of check ups. I personally have reasons why I didn’t go, which will need to be another post, but listen to me; while there may be truth in those words, when you’re facing CANCER, you do not need people in your life making you feel worse about ANYTHING.
4. If you are someone who is into alternative/preventive medicine, great. I am super into nutrition, highly believe in it and there is a place and time for that conversation. But only if the opportunity presents itself, or you are very close with the survivor, and you feel they are open. Walk lightly.  I had two people, independent from the other, tell me in the height of treatment, that I needed to eat more mushrooms and the other was pushing cloves. Again, I feel these people were well intended but honestly I am not super close with either of these people-one came in the form of a message and the person had not said boo to me the entire time, and the other was from someone who said this definitively, in passing. Y’ALL!!! Seriously?? Again, it  minimizes cancer and invalidates the survivors treatment. I understand that there are cases where the survivor has been in constant treatment for months/ years and there may be an opportunity for someone to say, “Hey, have you talked your doctor or thought about___?” But most of the time that is just not going to be your place unless you are walking very closely with the survivor.
5. If the loved one is diagnosed with a cancer that will or has the potential to make the survivor infertile, PLEASE don’t say “Well, there’s always adoption. Lots of kids out there need a home.” It’s not that this, among the other things are not true-it’s that when you are in the throws of cancer AND you’re losing fertility, it sucks. It’s painful. It’s so overwhelming and can make you feel sorrow on a level you weren’t sure even existed. To hear someone say, “Well, you can always adopt…” makes the survivor feel like their feelings and emotions of grief and sadness are not warranted and again, minimizes what they are facing. We KNOW there is adoption. We aren’t stupid, we are grieving a loss, a death of a dream that has been inside since we were little girls playing with baby dolls. Yes, there is adoption and it is oh so beautiful, but let us grieve and feel what we are losing.
6. Lastly, try to steer away from the, “If you need anything, let me know.” I know, you’re probably thinking, what is wrong with that?? Well, you see when you get a cancer diagnosis you are completely overwhelmed and your brain is in a thousand different places from-What am I going to do about work? How am I going to take care of my kids? How much is this going to cost? How long is this going to take? Am I going to die? For myself, I am already the person who is notorious for not asking for help and trying to do everything on my own, so I have grown a lot during this time. After talking with other survivors though, I have concluded that when someone is specific it is waay more helpful. For example, “I’m coming over on Tuesday to bring you food and will do any errands you need.” or “I am coordinating a dog walking schedule for you or a meal schedule for you.” or “I’m coming to take the kids on Friday night to a movie and dinner, so you don’t have to worry about that.” THOSE things are so helpful and takes the thinking responsibility from the survivor. The survivor doesn’t need something else to think about. Even the smallest gesture can go long way. Think about times when you yourself have been sick with something like the flu-what were some things that were hard for you to get done? Think about your survivor feeling like that long term, and get creative in some specific things you may be able to help with.

I guess my overall advice would be to be more quiet than not, if you’re feeling unsure. Be present for your survivor but don’t feel like you always have to have the “right words.” Sometimes not saying anything and just being-is the very best. I would even go as far to say, if you feel like you need to “say” something and you’re not sure...say THAT. I found so much comfort when people close and not that close to me said things like, “Holly, I’m sorry. I just don’t know what to say.”

A cancer diagnosis of any kind or stage is hard. If you’re feeling overwhelmed, think about how much more the person you love with cancer feels. I have found for myself and other survivors, you really find out who is legit and who’s not. It surprised me who leaned in and who steered away. If you’re gonna lean in-be thoughtful and present. Your survivor may not have the ability to say it, but she needs you.

I have had an army of support and don't have pictures of everyone, but here are several of my people who chose to lean in. 

Dry Shampoo and Coffee

It’s Saturday morning and as I sit with coffee in hand, my mind is still on a reel from the past several weeks. The only thing that keeps coming to my mind is “How did I do that?” This month comes in, in at least the top three most stressful eras I have faced. I teach at what is considered a satellite campus for the district. The first week of school was a MONSTER. Did I mention the internet being down and parents impatiently making requests for registration that I could not grant and administrators frantically demanding paper work?  As a PreK teacher the first day is very chaotic and stressful as there are tears and often blood curdling screams from students and sometimes parents, who are emotional leaving their babies for the first time. This year was no different. Thankfully by day two internet had been restored and we were able to continue with enrollment (notice I said enrollment and not teaching…somehow I was expected to do both. I’m good but not that good). The building had flooded two weeks prior, so we had gotten in with JUST enough time to set up. Documents were damaged in the flood and paper work was missing that had to be redone for registration. I have many English language learners and really cannot explain to you how extremely stressful it is to walk refugee parents with limited language, through online registration. Yet, all of the above, oddly enough, are reasons I love my job. I love the population I serve in a Title 1 program. My heart is there. It thrives there. In the midst of the crazy and the stress, I was beginning to feel like me again. Not the cancer patient. Not that one teacher who had cancer and was out last spring. But me. The old me.'

In the middle of first week chaos, I had an oncology follow-up and results from the biopsies taken the week prior. Unfortunately, the news was not good. Cancer remains. Right now the treatment will be surgery and depending on how surgery goes maybe another round of chemotherapy. My heart is so thankful for an oncologist who will sit and talk to me. Who will shoot straight with me, who I feel has my best interest at heart. I am beyond thankful for a plan forward. I trust her with my very life.

Yet…I am so sick of being sick. Wasn’t I JUST starting to gain some energy? Wasn’t I JUST feeling like me again? And now major surgery?? I am tired of this. I long for normalcy, but I don’t even know what that is. I was looking through photos last night and can’t even pinpoint when things changed. I can kind of get it within a few months, but not really. Part of me wants things to go back to how it was before cancer, but I know I never can. And would I really choose that anyway?  I am not the same person. I don’t even feel like I look like the same woman and on a realistic note, it has aged the hell out of me. Inside, I am changed beyond what I can fully explain. Perspective shift is an understatement. I see absolutely nothing the way I did before. Nothing. Even the, “Oh wait, you still have cancer” thing looks and feels completely different on this side.  Before, cancer was unknown. I didn’t even want to say the word. I was completely fearful, and unsure. I am still those things to an extent, but it feels more familiar. I have been around it a lot, which is the part that makes me feel comfortable yet afraid because I have watched with my eyes what it can do. The fact that mine is still hanging around is unnerving and yes, I am afraid. Yet there IS a plan forward and reasons to be thankful.

Which leads me to lay out the constant conversation I have been having with myself the past few weeks….Can you be afraid and unsettled YET still thankful there is a plan? Can you admit fear and still have faith in the One who holds your very life? Can you admit your weakness, weariness, and frustration and STILL be thankful there is a plan forward in treatment? 

Every single one of those feels like they are in opposition to one another but I feel every single one of those-at any given moment. At any point during my recent days I have been on the verge of either tears of fatigue, tears of fear, tears of frustration, tears of thankfulness and humility, OR cursing out of frustration because people want to either act like I’m their hero (which can feel very uncomfortable) OR like NOTHING has happened, or cursing out of frustration that I have been feeling more like me and now I am getting my legs kicked in again. Now, you tell me….does THAT sound like someone who trusts in God’s plan for her life? Does that look like someone who has it together and is holding fast to her faith?

How beautiful and amazing, that the answer to those questions is a big fat NO…..yet a big fat YES at the same time? See, God is showing me that admitting my weakness is actually strength. Y’all, I’m talking about the kind of weakness where you cry out in tears, throw up your hands, and yell out some F bombs because you got nothing. I’m talking about admitting that you are terrified that cancer will not ever fully go away and you’re bound to a life of treatment. I’m talking about admitting that you don’t understand why God chose you to carry this burden, even if just for a season. I’m talking about weakness, where you say “I’m confused by God’s choice for ME to not have biological kids, but I see first-hand, every day, selfish adults who appear to be baby factories.” I’m talking about asking God why He asked me to do this for a little bit longer.

The beauty of it is that when our hearts get to that point and we are stripped naked with nothing left to hold on to-and we admit out weakness, we have a choice. We can either continue to wallow in those questions and live in limbo and anger OR we can choose to lay them at the feet of the One who made us. Think about it. He made me. He knows I am pissed. He knows I am scared and afraid. He knows I am wondering how in the world He will redeem this? The absolute beauty of the gospel is that I can be honest with Him, He can hold me in my weakness and that I am may NEVER understand any of this….but He will hold me. AND in my weakness, I may crawl out of His lap several times a day, thinking “I got this” “I can do this now”….. and when I finally start seeing how very much “I don’t have it” and how “I can’t do it, “ He scoops me right back up and I bury my head in His lap and weep.

The truth is, I am no one’s hero. I am weak. I do not have it together in any way. I just admitted to you that I am basically on the verge of either tears or cursing, at any given moment. I am not “doing great” and I feel like I hobble home every day and hobble around my house and then fall into bed. I really am mostly dry shampoo and coffee.

The only thing I know for sure, is that my heart desires to stay in His lap. I fail miserably at this daily, sometime multiple times. Maybe you do too? Is that okay? Does that make your faith weak? Does asking questions make you weak? I have personally never felt so close to God than I do now. It’s funny how that is. I have not been able to attend church regularly since February, I have said more F bombs in the last 8 months than I ever have in my life, I am admitting that there is a lot I do not understand and a lot that I want to go away, I am admitting that I am weak and want this cup to pass, and yet….He is with me. Daily I feel Him more than ever. As I hobble around my life, every moment I am aware of His presence and that only by His provision and goodness, am I here. He is here.

A flower I found on a walk this week.

Luna keeping me company after biopsy surgery.