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. 

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.

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.