Use it or lose it – Dilators

There are lots of things about cervical cancer and HPV that the public doesn’t know and understand, things I didn’t know about before I was diagnosed. I strongly feel that if people understood what cervical cancer treatment “looks” like and the long-term side effects of treatment, women would be lined up to get Pap and HPV tests and parents would be running to get their girls and boys vaccinated. When I was diagnosed with cervical cancer in 2016, I had friends and even a nurse say to me, “Well, at least you got the easy cancer. You can probably have a hysterectomy and be fine.” There is so much wrong with this statement that it’s hard to know where to begin. It is true that an individual’s treatment plan could consist of a radical hysterectomy. The implication that any cervical cancer treatment is easy and has no significant impact on women is hurtful and untrue. Further, treatment often consists of many more procedures such as chemotherapy and radiation. These treatment procedures are often damaging to the entire pelvis and leave life long side effects.

One of the treatments with significant life altering side effects is brachytherapy, or internal radiation, sometimes referred to as HDR (high dose radiation). Many women will have several rounds of brachytherapy as part of their treatment plan. The radiologist will place a ring in the cervix that will stay implanted until all brachytherapy rounds are completed. Personally, I had five rounds and was fortunate that my radiologist put me under for each round, as the procedure is several hours and includes the administering of the radiation and CT scans before and after to check on placement and tumor size. Brachytherapy is very effective when treating advanced cervical tumors that have not spread to any other major organs or lymph nodes. However, it comes with life long side effects that I would have never imagined.

So we all know that radiation shrinks things, right? I mean that’s why we do it, to get rid of cancer. However, while it’s shrinking tumors it’s also shrinking other tissue, like your vaginal walls. Unfortunately when treatment is over, radiation continues to work it’s magic…a blessing and a curse. Many women who have had brachytherapy will be given a dilator at the end of treatment by their radiologist. I will never forget the radiology nurse coming into the room on my last appointment and handing me what looked like a white candle stick. She looked at me very sternly and said, “Use it or lose it!” My oncologist had mentioned prior to treatment that I would need to use a dilator afterwards, but honestly that was a blur. I mean, prior to starting treatment I was a deer in the headlights getting set up for port placement surgery, going to chemo class, getting a chemo doctor, getting set up for radiation, getting a radiologist, etc. So, my gynecologic oncologist did mentioned this, but, I had not given it much thought. Here I was on my last day of radiation, getting ready to have this momentous occasion of ringing the bell, as it was FINALLY my turn, and all I could think about was the dilator.

After treatment, I did okay with using it. My radiologist encouraged using it every other day and to continue using it even if I was having regular sex. He insisted that without stretching the vaginal walls, that the radiation would continue to work long after treatment and the vagina would begin to close. What? I had never heard of anything like this in my life. Of course I went home and googled and sure enough there it was! Why had I never heard of this before? I made the decision then, to get cozy with the dilator because I did not want my vagina to close! Who wants that?

My post treatment scan was positive, there was still cancer present. After taking biopsies to ensure that it wasn’t a false positive, my doctor immediately scheduled a radical hysterectomy. This surgery was coming with potential risks, since I had pelvic radiation just months prior. In spite of the risks, my gynecologic oncologist was adamant that this was my best chance at being cancer free, long term. After the surgery, healing was very slow and I ended up hospitalized with an abscess in the vaginal cuff, on the verge of sepsis. While hospitalized, I had several tests to check on my bladder and kidney function. Most of these included being catheterized, which after all I had been through was really not the worst thing, but definitely not the most comfortable, especially since so much of my pain was in that entire area. The first night I was in the hospital, the nurses missed my urethra while trying to catheterize me. They stuck the catheter it in my vagina instead, right in my abscess. I had felt a lot of pain up to this point, but nothing could have prepared me for this kind of pain! These were nurses who knew me well since I had been in and out of the hospital since my diagnosis, and they felt terrible. I forgave them but, on my gosh, that was some of the worse pain I have ever felt and continues to effect me.

Shortly after being sent home from the hospital, I developed a vesicovaginal fistula. The general public has no idea  what a vesicovaginal fistula is; many individuals who have experience with a cervical cancer diagnosis do not know what this is.  I think it would be beneficial for people to be aware of. The fistula formed between my bladder and my vagina as a result of the receiving a radical hysterectomy post internal radiation. The tissue was not healthy enough to heal properly, especially due to issues with my bladder post-radiation. This resulted in a hole in my bladder, that caused me to urinate through my vagina, instead of my urethra, with no urge “to go,” meaning it was a constant flow. My doctors explained that rushing me off into surgery was a bad idea. She wanted to give my pelvis time to rejuvenate and with a vesicovaginal fistula, urologists want healthy and healed tissue to work with before moving into surgery. What this looked like for me, was 3 and half months in adult diapers every single day. As a reminder, urine is acidic, so having urine go through the vagina and irritating it for three and half months was extremely painful. The surgery to correct this ended up being an abdominal muscle grafted to my bladder, to repair radiation damage. In addition, more of my upper vagina was removed and I had skin from my thigh grafted to replace the radiated vaginal tissue.

Here is where we get back to what my radiation nurse told me, use it or lose it. Due to the radical hysterectomy, complications after, and this surgery, it a year before my gynecologic oncologist gave me the go ahead to start working with the dilator again. After this year, my vagina is so short and small that my doctor has to use an infant speculum for exams! The combination of radiation and multiple surgeries has caused my vagina to nearly close.  The vaginal opening is coming in at a whopping 4cm! She has given me hope that if I continue to work with my extra small dilator, consistently, that I can move up to the small and perhaps even move up from there. All of this depends on me, using it most days, and being consistent.

Consistently using my dilator is a struggle. I wrestle with several issues. One, is that I have anxiety about anything going in my vagina at all. It is painful and I have a rational fear of damaging and possibly reversing the reconstruction that saved my bladder. During my last appointment I had a very honest conversation with the physician’s assistant at my gynecologic oncologist’s office, who has been by my side from the beginning. She assured me that enough time has passed that I will not reverse my surgery and that with consistent effort, I can stretch the vaginal opening “some.”  This means we are not sure if it will ever be able to hold an entire erect penis for penetrative sex, but it could get better than 4cm with consistent use.  Using the dilator makes me so anxious that I often skip doing it because I just don’t want to have to deal with it. It’s so overwhelming and can feel like a huge task in my head. So, she helped me to set some realistic goals. I committed to using the dilator three times a week for the next three months, until my next appointment, and reassessing at that time. In order to help with my anxiety, I have some rituals that I have implemented. For example, I like to use my dilator after I shower and feel relaxed and always lying down, propped up on my bed. I also like to watch something mindless to divert my attention from pain and discomfort. (I like to watch New Girl or Fuller House, since we are being totally honest here).

So, what happens if I don’t use my dilator as instructed?  Well, if I give up my vagina closes, and I move on. Truthfully, in some ways that sounds fine with me. I’m kind of done on a lot of levels with this thing. However, deep down I don’t want to give up. I want to at least give it the best shot that I have, to make it better. I know that it will never be “normal.” The hope is that it can at least be better, that is keeping me focused and consistent.

When I tell people about these things and what my reality is after cervical cancer they are usually shocked. Women don’t talk about these intimate issues. I understand that it can be uncomfortable and embarrassing. Up until today, not many people knew that my vagina is 4cm. If we are not bold in speaking about these things, other women suffer alone in silence and a cancer that can potentially be eradicated will senselessly move through another generation. Early detection and prevention are key! The Pap and HPV co-test are wonderful tools that we now have for cervical cancer screening. We know that HPV is ubiquitous and causes most cervical cancers, in addition to vaginal, anal, vulvar, penile, and oral-esophageal cancers. Thankfully there is a safe and effective vaccine to protect males and females, before they are even exposed. I wish that I had known what I know now. I wish that I had heard someone talk about cervical cancer and the importance of screenings, even when you “feel fine.” I wish that I had heard women speak out. I can’t go back and change my experience, but I will work to change it for other women. I will tell my story in order to make a difference for someone else.

Holly is a two year cervical cancer survivor and Cervivor Ambassador. Read Holly’s Cervivor Story here.

 

 

 

Because I love her.

The conversation had started off as well as these things normally do. I was standing in my studio getting ready to work on some new music when she called.  We said our hellos and asked each other what the other one was doing. Then she paused a moment and breathed hesitantly, yet with a firmness of practiced thought and review.

“Before we go any further, you need to know. I have cancer.”

As I’ve come to know over time and experience in being part of the caregiver community; no one fully knows what their reaction will be. There is the conscious utterance of sorrow, shock, and surprise. Yet in the subconscious, an obfuscation of thoughts and emotions spill without measure throughout the very fibers of your being. Fear and ignorance of the details of the situation that you’re now facing, no matter how grand or subtle, eats away at the very thing that you hold dear with that person.  The very love and hope that you’ve invested towards them, is compromised; in ways that are completely and thoroughly incomprehensible to you as you stare in the incredible gravity of those words they just spoke.

As I’ve also learned in being part of this community now; the fear, uncertainty, ignorance and misunderstanding; has caused many to walk away from their loved ones. I’ve been told stories about how so many husbands have walked away from their spouses, children have blamed their mothers, and communities have shunned them in whispered rumor and judgement stricken with the narrow doctrines of puritanical ideologues.  These women who have become victims of cervical cancer and other HPV related diseases were now the sorority of Holly Lawson. This beautiful and vibrant woman whom I just had met for a date at some innocuous local pet store and had a small dinner date with at Fuzzy’s Tacos only days beforehand, was suddenly telling me that she was now stricken with a disease that I had only passing awareness of. This woman that made me laugh and smile like no other, was now entwined within a somber embrace to a vessel of suffering that humbles all who linger in its shadow that does not fade.

Holly was scared, though she held it well. If one only glanced she appeared mostly unaffected in passing. Yet I know fear. I know death. I know suffering. I know despair. She could not hide it from me.

“Oh my God. I’m so sorry…”

“If you don’t want to meet me anymore I…..”

“When can I see you? Can I come over later tonight, well it is getting late. How about tomorrow?”

“Wait. Didn’t you hear what I said?”

“Yes, I did. So when can I see you?”

“Aren’t you afraid or something? I mean, I just told you…”

“Yes I am, but I am not going to give up a chance on love because of this. Well just see where this goes, we’ve only been on one date so far, well technically 352 dates already…. Besides, I know this great taco shop called Rusty…”

That was our first real conversation. From there I watched in awe as she battled every day an enemy that I could not kill.  I waited with her as she lingered between states of consciousness and awareness in almost every area of her hospital and various clinics.  I held her hands as she trembled from infections that caused mortal pain.  I looked on in absolute shock and sadness as she bore the Frankenstein like scars on her body of what the doctors had to do her physically, to keep her alive.  I held her as she cried, awash in depression, anger, fear, hate, and confusion at her own family and friends who were not there with her and did not appear nor could they truly understand what she was living through, and the battles that she won and lost in a war for everything she was. I watched as cancer broke her and everything that she held onto from a previous life — that seemed so distant and blurred with fondly recalled memories; seemingly fading a little more with each passing day where she lingered in its suffocating shadow. I watched Holly survive.

“Before we go any further, you should know; I have cancer.” 

That sticks with me every day. Cancer is not something that goes away just because you have gotten some sort of treatment.  It lingers in your thoughts, it colors the sky teal, it fuels contempt at the world, it makes you smile with your arms linked a fraternity of those caregivers who stayed — who want nothing more than to comfort and ease the wounds and scars inflicted upon the women they love so desperately by a villain that they cannot kill.

As a man, I have found that being a man is much harder than it appears by birth-rights. Charging into a fire, running towards gunfire and putting your physical life on the line does not ultimately make you a man. Nor does it really make you courageous and worthy of praise.  That is because when one finds themselves in the moment of fight or flight, you either do or do not.  The try part is left to the others who endeavor to make sense of the ways which you have to make that decision in the first place. In my opinion, being a man is standing there with the woman you claim to love and care for, and help her walk down a linoleum hallway in the middle of the night with the stench of chlorine and sterility holding her hand as she struggles to stay conscious and upright. It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for her to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain to dimly coherent conversations laced with the morphine that eases some of the suffering. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment; knowing full well that your workday is going to be pure hell after driving at least an hour one way just to get here on time. I’ve discovered that many men have not done this. They walked away. They have left the mother of their children and their partners of some years because she has suffered a blow to her very existence. A man does not harm his partner and does not leave her side because she is suffering through something that she did not cause.

Holly did not invite her fate, she was a victim of life, as we all are. If I could not give her a chance, give myself a chance, and give love a chance; then everything that I’ve ever stood for and have ever believed and have fought for is truly worthless.  It means that ultimately, I do not care about love. It means that truly, I cannot love. However, as we all want love, so do I. Because of Holly, I believe in love and the absolution of what that means.  I believe in love, not because of some mythical story of dragons or starry-eyed fairytale of gowns, but because I believe in what is right and good about this world and our place in it and to me that means that you have to believe in it for its very sake; not because someone told you to do so. From what I’ve seen in life, this is not really taught to anyone in ways that they can truly embrace unless they have experienced it for themselves. So, in the end, the very thing that keeps me; is that I truly believe in love.

I believe in what Holly is. The same woman that made me laugh and smile; and think; and fuss and curse — and all of it. I believe in life again and all of the beautiful and horrible things that it brings us. Not because I was told to. But because I met Holly. When she survived, so did I. Why?

Because I love her.

Addendum

“Before we go any further, I have to tell you something. I have cancer again, it came back.”

“Really? F***. Ok. Let’s go to Fuzzy’s… I kinda want to try that new burrito bowl. It doesn’t look like the one from Chipotle, but hey let’s try it anyway, we should get nachos too…. The pork ones.  It’s going to be a long day between Dr. V’s office and the cancer center. Hey, hold on let me get the door… there you go, the seat belt is back a little far so I don’t want you to stretch too far, you’re still in your belly.”

I kissed her gently as she sat in my car.

“I love you, Holly. Everything is going to be alright.”

Check out Holly’s story here:  www.cervivor.org/holly

Claude Swain is a writer, actor, and musician who hails from Rocky Mount, Virginia and now resides in the Dallas-Fort Worth area, with Holly and their fur baby, Luna. He is a Marine Corp combat veteran and attended Virginia Tech. Claude has played in the Richmond Symphony and is an active part of the Dallas music and arts scene. He is a wine enthusiast and cigar aficionado, who has never met a taco he didn’t like. He is currently the Sr. Site Development Manager for Tillman Infrastructure in Carrollton, Texas.