How my story begins: I entered the Cancerverse officially on February 12, 2021, but I should have knocked on that door much sooner.
My second of two children was born August 14, 2019. During the last few months of my pregnancy with him I had started spotting (small amounts of vaginal blood) after intercourse. Chalking this up to being very pregnant, I hadn't paid it much mind. After my six week postpartum check-up and we had the green light to start having sex again, the spotting was still present. Again, I didn't pay this much mind because I had just had a baby, the plumbing was still freshly healing from birth. As time went on, so did the spotting after sex. I'll admit I let it go on for a devastating amount of time before I went in and that will always haunt me.
With two small children at home and a husband that was away from home for a week to two at a time, I left myself very little time to actually care for myself. My OB noted that I was due for a pap test the following year (this would have been in October) but I could have had it done at that six week postpartum appointment. To which I declined because my frazzled mother of a newborn and toddler brain convinced myself that they were falling apart and were in meltdown mode for my husband in the car parked outside. All were obviously fine, and I most definitely should have done the pap that day. We also really weren't able to have sex often with our new lives so I wasn't fully aware of how "bad", at what I learned later to be a tumor, had gotten. I finally made calls for an appointment with my OBGYN after I started confusing post-coital bleeding with having a period which came with heavy bleeding, cramps and nausea.
She confirmed that there were abnormal cells on both the exterior and interior of my cervix and made an appointment for a colposcopy the following week. At this appointment, she had a much better view of my cervix and the words, "I'm fairly certain this is cancer", floated from her lips to hang over me, not fully absorbing or making sense. The tumor was incredibly vascular and very angry at her presence. She did not take a full sample from it because the amount of blood that I lost from a swab quickly deferred her from wanting to make it any more angry.
I was called back to her office three days later to learn that I had adenosquamous cell carcinoma that was brought on by HPV 16 and that she would begin the referral process that my insurance company needed to get my treatment started stat. I had a 4cm tumor on the back side of my cervix and two pelvic, an iliac, and paraaortic lymph node infected.
Life before my diagnosis: My life before cancer has always been fast, furious, and passionate. I graduated high school, moved from my 600 population town in South Dakota to Oceanside, California only to move home almost a year later to attend beauty school. I had worked no less than two jobs my entire life, and filled every other second immersing myself in a new hobby every few months.
I met my husband in 2014 and we filled our lives with adventure and excitement. He had been hunting since the millisecond he was able to and never slowed down or so much as glanced back. His passion was infectious and it didn't take me too long to convince him to teach me how. It took maybe less time to put up bigger turkeys and deer than him, which is a sore subject most days, but all goes back to my wonderful teacher and guide.
We were married in May of 2017 and a week later found out we were expecting! Fast forward, as it seemed life had done just the same, I gave life to two amazing, busy, chaotic, fireball boys that are now 3 and 2 years old. They took up our outdoorsy and adventurous way of living immediately and love exploring the woods as well as open water and ice fishing. We live in North Dakota, a perfect location for these hobbies. After 10 years in the cosmetology industry I decided to stay home with the boys full time after the pandemic hit, and though it was a huge change of pace, I wouldn't trade it for the world.
How I felt after diagnosis: I spent a lot of time in limbo and disbelief in the next week and a half. My husband is in the USAF, his squadron had been short-manned and he had to trip out to the field the day before my appointment so both of my parents had driven seven hours north to our place to watch my boys while I had the colposcopy. I called my husband from the parking lot and watched his face fall when I confirmed his greatest fear. I was still too numb to surface any emotions and I hadn't had an official diagnosis yet I told him, and more so to myself.
If you had seen the way my doctor said 'cancer' and felt her energy, you would also know whole-heartedly that it was in fact cancer. While that week and a half between hearing the words 'adenosqaumous' and 'carcinoma' drug on, it simultaneously was over in an instant. There was a lot of confusion as to where I would be receiving treatment. I live in North Dakota. There isn't a single Gynecologic Oncologist in the state. My OB had a colleague at Mayo and that's exactly where I wanted to be. Tricare thought differently, and I am now incredibly grateful for their referral in-network to Nebraska Medicine. I spoke to a case manager from my GynOnc's office on February 12, and had an appointment set up with them and a Radiology Oncologist for four days later.
I didn't have time to process what in the world was going on. I didn't have time to think. I was terrified, and cried anytime I thought about my children and their futures. I always had a hard time picturing who they would grow up to be, because there were an infinite amount of possible outcomes for each of them, but now with this diagnosis I would think 'can I not picture it, because I will never see it?' As a mother, my only objective was to keep my kids safe and upright, and now I couldn't do that for myself. That reality was earth shattering. My husband had already faced so much loss in his life, I couldn't bear the thought of being another person that he loves and has to watch die. It wasn't until after my first round of treatment that I allowed myself to think about what toll it was taking on me. I focused so much about being strong for everyone else, and so wrapped up in how everyone else was handling my cancer that I didn't handle it at all. So I spent the first 12 weeks of having cancer numb, empty, and dissociated from reality.
Telling my family and friends: I felt terrible for how I brought my parents into my Cancerverse. Nate, my husband, had tried to get off work to be home to support me, but since he couldn't I called my mom.
"Hey what are you doing this weekend?" I asked my mother.
"Oh Brenda has a birthday party Saturday, why?"
"I have an appointment Friday to find out if the abnormal cells on my cervix are cancerous or not. Nate has to go to work and I don't have a babysitter or want to come home to an empty house. Will you please come up?"
Looking back I feel like such an ass for that. I hadn't told her or my sister or sister-in-law anything leading up to that point because I didn't want to worry them or explain that I was just freaking out and my pap would came back perfectly fine. My sister-in-law had also recently been informed at a routine OB check-up for her pregnancy that she had abnormal cells on her cervix too, so I didn't want to downplay her experience, though I kind of ended up blowing it completely out of the water. Sorry about that, sis. She ended up having precancerous cells also brought on by HPV 16, and was able to have a LEEP, at her postpartum check, with clear margins.
My sisters were the next to know in our very well used group chat. I never knew exactly how to tell people, I still don't. My poor friends. "Hey how's it going, Jodi?" "Uhm, good. I have cancer. Sorry." Like, what? At the time, I was thinking just rip it off like a Band Aid, open that door to the hard conversations that followed. I delegated my mom to tell my hoard of aunts and my dad and my two uncles because I just didn't know how to.
I couldn't help but take responsibility for their sadness in reference to my diagnosis and I struggled for so long to accept my family's love and care as such, instead of pity and guilt for some reason. After we went to Omaha for my initial appointments and planning PET and CT scans, I had a week before starting treatment. In that week we went to South Dakota where my parents were keeping my boys at their place. I was able to see so many friends and nearly my whole family to explain to them what was going on, or what I knew of what was going on. I learned that an insane amount of women I know have HPV. It was truly eye-opening to really see how many people just in my circle had been affected by it. I got a small taste of how amazing and widespread my village of support would grow to be.
Then I started a blog. My husband's family is in Wisconsin, my mom's family is huge, and I have friends all over that are always curious, but cautious to ask what's happening and how it is going. So I started covering all of my bases and made information accessible to everyone. In doing that I was able to educate so many more people than I thought I ever would about women's health and the importance of screenings. I made countless calls to important members of my circle, and it never got any easier. I could hear the cracks of their brokenness come directly through the phone, and I began to feel like the moderator of every conversation I had and was going to have about my situation. Everyone looks to me to set the tone of each conversation I have no matter the topic it seems. As draining as it can be, I noticed I also go out of my way to be optimistic and set an expectation of happiness long before any other emotion can intercept, whomever I am talking to. I don't have time for sadness, and I don't feel like it has a home in my life or my head.
My treatment: I am currently on my second treatment regimen. I started the first treatment on the last week of February with 28 external VMAT radiation blasts, four of what was supposed to be six rounds of weekly chemotherapy, Cisplatin, and four internal radiation or brachytherapy treatments. External radiation was actually quite relaxing and somewhat therapeutic. I was scheduled first thing in the morning and was seen at a clinic about a mile and a half from our hotel. Since I had positive lymph nodes nearly up to my diaphragm, the radiation field was quite large and mostly impacted my stomach and bowels. I felt the best and had the most energy after my weekly dose of Cisplatin. Though we all know it was the steroids carrying me over. My platelets dropped very quickly, and not having much time for recovery, the last two weeks of my chemo were cancelled.
By the time I went in for brachytherapy, a week after external radiation had been completed, I felt human again and was regaining energy. Most of my time in Omaha for this treatment was spent in the hotel room napping, something I have never been good at, and sulking being away from my kids and home. My husband provided top notch support and got me out and about a few times, helping much more than it could have ever hurt. We were able to make a few trips to South Dakota to hang out with the kids and they made a trip to see us and the zoo, but it took so much out of me. Brachytherapy, with the exemption of my first treatment, was a piece of cake.
On my first visit, they sedated me fully and did a thorough and "hefty" pelvic exam along with placing a smit sleeve to keep my cervix open and the apparatus that held the radioactive pellets that would provide sufficient zapping to the tumor on my cervix. I woke up in interim recovery in a ton of pain with an empty stomach and nauseous as all get out while waiting for planning to be done for radiation to come later that day. I was totally zonked and I believe they gave me a morphine pill to help with pain. I threw it up about twenty minutes later, and not much brings you back to your body like heaving and feeling like you are going to shoot a medical device across the room from your undercarriage. I slept most of the day we were there, and hardly remember having a CT and MRI for planning or even having radiation. I went to the hotel that afternoon around 4pm and slept until after noon the next day. Each time I went in after that was easy, relatively quick, and refreshing. My uterus kind of curves back toward my spine, so a stabilizing device was placed on the apparatus and I got to hang out in one of the bougie CT rooms instead of being wheeled to recovery and back.
Since I was taking up one of two important rooms, planning went very quickly and I was out by lunch each time I had internal radiation. I had my appetite back, and was regaining energy quickly so having the desire to eat and access to downtown Omaha was a luxury I had lived without there for about eight weeks.
I am currently on a chemo cocktail of Taxol, Carboplatin, and Avastin because though brachytherapy took out the tumor and most of the lymph nodes in my abdomen, my three month PET scan showed new cancerous activity right below my diaphragm and in a cervical node near my neck. I have three rounds under my belt, and I believe I will have another three. As a cancer patient, a person learns to be comfortable in limbo, as I am back there as we speak. My platelets are apparently testy little dudes and have been dancing on the brink of being too low for chemo. I have been getting my magic poison every three weeks, but if they dip any further down it will be extended to every four. As I write this on a Thursday, I have blood draws tomorrow to make sure my blood is happy enough for us to travel to Omaha Saturday for a CT on Monday and chemo on Tuesday.
I have been prepared incredibly well for all aspects of each of my treatment plans, almost too well and many side effects I have been ready to endure never showed up. Definitely not complaining! I had my share of stomach and bowel issues this past spring with radiation, but I am happy to report the only notable side effects I am facing for chemo have been extreme fatigue, hairloss, headaches, and my vision is slowly getting worse. Brain fog has been haunting me since long before this journey, but chemo brain has taken it to a whole new level. I am still trying to think of a word that escaped my mind about a week ago, and it is driving me crazy! Small things like that effect my daily life, but small they are, and I am willing to deal with them any day because I am upright and breathing.
How I felt after treatment: After I finished up my radiation this spring, I felt like I could breathe. I spent nearly the entire ten weeks of treatment dissociating and in a whole different world thinking that if I acknowledged that I was sick, it would only fuel the disease. I ignored the fact that my reality was cancer. In my mind, if I spent energy thinking or focusing on any part of being sick it would get worse. We all know people that concentrate so much on downfalls, or shortcomings, or setbacks, or illnesses that it consumes their entire being. I was not about to let cancer take the me out of myself and become that person. I will tell you, that if I could, I would have gone back and immersed myself in having cancer in those moments. I wish I could have been comfortable and confident enough to know that the energy I was wasting ignoring my reality could have very well impacted my treatment in a more positive way had I known how to direct it correctly.
When I got home from treatment I started to realize how poor I let my mental health became in those months, when they could have been the best time I would have ever had to work on them. I could have spent so much time working on my mind and soul while my body was healing, but instead I wallowed. After having opened my eyes to my disruptive behavior and went through a mental breakdown of sorts, I sought therapy and guidance. The hurdles and hoops that came with that as a military spouse were very discouraging. There are avenues and programs set in place for me as a spouse, but they are designed for someone a bit less broken than I was at the time. I was able to get in with a counselor on base about a month and a half after starting the endeavor only to be given a few simple exercises to help combat my anxiety, and after three visits with him of minimal "help" he left his post.
The counselor off base that seemed to have fit so perfectly with me had a waitlist six months long, and I had been patiently waiting for my turn with her to come. I have since sought out other avenues that resonate more deeply on my own, and have come leaps and bounds internally. I have been at my very darkest during the past six months, but simultaneously my very strongest. I see things, people, and events through different eyes. I am more forgiving, patient, understanding, loving, and compassionate all while protecting myself, my energy, and my family more fiercely.
What was most difficult for me: The hardest part of everything has been my inner struggles. I thought I knew exactly who I was before my cancer diagnosis. I fought so hard to keep a grasp on that person through every leg of the marathon, then fought the urge to trash the idea of her completely. I now know that I will never be the woman I was before entering the Cancerverse, but the very best and strongest pieces of her have carried me through the darkest days and will continue to do so. I left the parts of her behind that found homes in ego, judgement, and immaturity.
I had to face a lot of inner pain and many wounds old and new to get to a place of (more) serenity to really direct my energy toward healing. It is certainly not easy, but every day I get up with the intention of being a better person is a day I am happy to live. There are days, especially the incredibly tired days following steroids wearing off after chemo, that make it nearly impossible to do. These days, my family and support system get me through. Giving in to the need to rest is also incredibly difficult for me. Growing up with the mid-west mindset that your worth is decided by how much you can accomplish in a day, does not agree with chemotherapy. Watching someone else, usually my husband or mother, try to do all of the things around the house that I would usually do is so hard. I not only have a certain way of doing everything, I feel burdening. Giving the reins up and just resting, is an art I have not yet perfected. I have barely accepted the fact that I need to do so, so that's how that is going.
What I did to help myself: As hard as it is for me to relax and shut my brain off, I know I need to. I just can't. So a big part of my healing is putting my brain to work and writing. My blog has been a huge release for me. It forces me to actually process my thoughts and present them in manageable English in an attempt to understand them myself. Its also so nice not having to repeat the same set of words about thirty-seven times after each visit or after something notable happens. In the same theme, I write thank you notes and cards to anyone and everyone who, in one way or another, impacted my healing. I have had friends and family contribute to my families financials, hang out with my kids, make us meals, deliver treats, even clean my house. Writing them a heartfelt and truthful note of my gratitude instantly pulls me out of a slump if I am in one.
I keep a list of my village and how they have lent a hand or even an ear with a stack of cute dollar store thank you cards. My boys draw pictures to their favorites and I fill the other half with my sentiments. I also have a file of a ton of cards and letters from said village that I like to go through to remind myself how loved I am. I am also recently getting back to my hippy heart that ran my life before the anxieties of motherhood started impacting my decisions.
I have sacred spaces in my home that offer peace and clarity to reflect and dive into myself. It is overrun with plants, crystals, and fun knick-knacks that bring me happiness, connected to my favorite room, the kitchen. It has the best light and just feels right to be in. I like to lose myself in books, macramé, and other crafts as well as spending time hunting and recharging myself in the woods. Getting into nature has been the best healer for mind and soul. To deal with hair loss, I took control. I had long naturally blonde locks, so when I got word I would be starting chemo I chopped it for Wigs for Kids. My family helped me braid them and each of them were able to cut off one. I then headed in to a friends salon and she gave me a pixie and bleached me out to start a rally of weekly colors. First being baby pink, then neon pink, to light teal, dark teal, then dark teal with a purple fringe until it started coming out. My three year old, sister-in-law, and husband all took turns buzzing it with my brothers crappy face clippers. A fun memory we all cherish and my son likes to relive once in a while. He also is in awe of my hair growing super fast every time I put on a wig.
My life after cancer: I will be brilliant, bright, and full of spreading awareness and possibly harassing the women in my life to keep up on their pap and cancer screenings.
Where I am today: In the literal sense, I am in my sacred planty space releasing pent up energy on my keyboard telling you my story. My favorite outlet, I am hopeful that it has brought a bit of light to your day. In my mental space, I am content knowing I am doing the medical housekeeping that needs to be done to keep me livin' large. Well, mostly just living, but I will do it loudly. In my heart, I am overflowing with gratitude for everyone in my life. Happy to hear my kids playing and elated to see my husband has folded the mountain of laundry - I have been using him finishing our laundry room as a reason to neglect.
I am in treatment and smiling through it because the people I have met on this journey and the lessons I have learned go beyond anything I could have imagined. I know more about myself and how I function at 30 than I think most people have the privilege of learning in their lifetime. I am also aware that I will continue to evolve for the rest of this beautiful life and I am excited to welcome those eras as they arise.
What I want other women to know: You have to put yourself first sometimes. We, as women, are always taking care of someone or something else and our to do lists are never-ending. No matter if you have had vaccines that prevent HPV, you still need to stay up to date on your pap tests. I was only a month over the recommended time frame for a check when I went in. You cannot pour from an empty cup, do not wait until its too late. An hour out of your life to go to to your GYN is a hell of a lot easier to schedule than six months of radiation and chemotherapy.
How I will try to help others: I will continue to shout my story from my keyboard in an effort to raise awareness about my situation and that it is avoidable. I will also share and share again in hopes that it reaches women new to their own Cancerverses that have the anxieties I had about the small things and inner working of treatments, facilities, and other things that Google doesn't cover.
I would love for my writing to calm at least one fear for someone else. There are so many fears that come with this life, so the possibility of that happening might not be as small as I thought when I began writing my experiences. One of the biggest things that helped me navigate life with cancer is finding other women that have undergone similar treatments and have experiences along the same lines. I urge everyone to do the same. Things resonate a little better when you hear them from a human you have a connection with. Whether it is a friend that had a different type of cancer a few years ago, someone in active treatment now, or someone you click with from an online forum or Facebook group, reach out. If they're anything like me, reliving those experiences is no burden because it helps me process what I am going through or went through from a new place or point of view and I appreciate it.
Any additional information you'd like to share: If you are putting off scheduling with your screenings because the funds just aren't there for an elective appointment or you don't have health insurance, I urge you to do a quick search of the resources available to your area. There are programs in place for states and cities for pre-cancer screenings and all other aspects of women's health.
Your mind is the most powerful tool you have, and will directly affect how your body responds to treatments and procedures. Take time to heal your mind and direct your energy towards what really counts.