It is with our deepest sympathy we announce the passing of our dear community member, Jodi Madsen.
After being connected through our monthly virtual support group, Creating Connections, Jodi felt she had found the community she had been seeking. She was a wordsmith and gifted us with several blog posts to share her deeply personal connection to cervical cancer.
Jodi had what we call the “Cervivor Spark” about her. She took her diagnosis and turned her voice up in a way that others would take notice and understand how we’re more than a cervical cancer diagnosis. We’re daughters, sisters, mothers, aunties, best friends, coworkers and so much more.
She utilized her social media platforms to create informative reels which earned her the Brittany Wagner Social Media Advocacy Award from Team Cervivor. Jodi would later get recognized by a global pharmaceutical company to share her experience and make an even bigger impact.
She was such a bright and supportive light in our community attending one Creating Connections after another – always with the biggest smile on her face and an occasional tear or two from seeing the impact of sharing our stories throughout the year.
She shared, “Getting to listen to my friends brought in a brightness I needed so deeply in my soul.”
Our thoughts and prayers are with Jodi’s two sons, her husband, family and friends, and our entire Cervivor community. We know how much each of you meant to her.
Cervivor Spirit Week gives our community a chance to bring some fun to an otherwise serious topic of cervical cancer awareness and prevention. As our Cervical Cancer Awareness Month Committee Co-Chair, Jenn Myers says, “It can be a heavy topic but we are the voices that need to do this work.”
We definitely had a ton of fun with everyone this week as we splashed social media with so much teal & white awareness! We love how many people took notice, shared their stories, and joined in on our cause.
Cervivor Español unofficially kicked off the spirit week with a MeetUp on Saturday then we transitioned into the theme days starting on Sunday! Sports Day Sunday brought out all the sporty-Cervivors representing their favorite teams. Lisa Gopman reminded us to get our cervical cancer screening and vaccinate our kids against HPV all while showing off her Bengal pride.
There were so many great Movie Monday quotes from some classic Hollywood films. Kel Bel spent the weekend watching Harry Potter movies with her daughter while recovering from her hysterectomy and shared this Albus Dumbeldore line that hits her every time, “Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”Mic drop.
Our Cervivor Noir and Cervivor API groups kicked off their inaugural MeetUps to further our commitment to diversity, equity, and inclusion for anyone impacted by cervical cancer. There were stories shared so powerful and we cannot wait to see the work they all do in furthering our mission to end cervical cancer. (If you identify as Black, join Cervivor Noir and if you identify as Asian or Pacific Islander, join Cervivor API).
On Talk to Me Teal & White Tuesday we asked you what Cervivor means to you and here’s what you shared with us.
“Cervivor means no one fights alone.” ~ Christy
“Cervivor means sharing our stories and using our voices to spread awareness and to end cervical cancer and to let other women know they are not alone.” ~ Brooke
You gave us all the cozy vibes on Warm Up Wednesday and Cervivors were sharing pics snuggled under blankets and some with their pets. Joy shared the unconditional love from her cat and Arlene was living the Wonder Woman Snuggie life.
Joy & her catWonder Woman Arlene
The favorite food of choice on Tasty Thursday seemed to be none other than… tacos! They really are the perfect food! Sharing our tasty treats helped us get ready for Saturday’s amazing session, Cooking with Tracy Citeroni, who demonstrated a versatile, healthy and delicious quinoa ‘risotto’. You can grab the recipe here to cook on your own!
We even kicked off our first-ever Cervivor Book Club meeting by discussing Brene Brown’s Daring Greatly! As we headed into our weekend, we asked you to share your happy places on TGIFriyay. Sand, surf, mountains, lakes, fireside, wilderness trails, and museum strolls hit the top of your lists for joy-inducing places we like to be.
Phyllis captured magic in HawaiiKristine’s sunsetAmanda’s trail
And we ended this year’s spirit week with a favorite, Sock It To Cervical Cancer to bring out your favorite statement socks with a Cervivor flare!
New Cervivor socks!Tasha Rachel
Through this time, we continued to honor the joy and Cervivor spark of our late Cervivor sister, Jodi Madsen. Cervivor Spirit Week was one of her favorite things from last year and she was a master in fun content creation and social media advocacy.
We hope this week has inspired you to continue these ways of advocating throughout the rest of 2023. It is truly incredible to see the power of our community and it’s a great reminder that we are Cervivor and we are unstoppable!
My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups.
From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny.
One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor!
Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them.
That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!
As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity.
So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart.
I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.
Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.
I have cancer and treatment is taking my hair. Do I have to suffer? Absolutely not! Personally, in the first few months of my cancer treatment, I surely would have liked to suffer by myself and not burden anyone by experiencing me bald and sickly. We are humans and I believe we are living to experience human emotion through connection. The saddest and most down I have felt in the past year of having cancer was when I felt alone and absent of connection. So, suffering at the hand of hair loss, in my opinion is avoidable. To share how I avoided the deep hurt from losing my hair, connect with me and join in on the journey of near waist length blond locks to bare, bald, and beautiful.
Jodi with her long locks
I am a cosmetologist by trade, though I certainly prefer the title “Hair Artist.” I have been in the industry since 2010, but cut back to only styling friends and family after having the second of my two children. I entered the beauty industry to bring to surface my clients’ natural beauty, as well as highlight and enhance them. Hair has been my passion and always fascinated me from the way it grows to how we approach changing color and textures. I have had a handful of clients come to me after their chemo hair had grown out and I never thought that I would be experiencing what they had to endure. The strength they showed is completely magnified now that I am in the trenches that they had to wade through to get to that post grow out perm.
Donation for Wigs for Kids
It just so happened that I was near my hometown and with my entire family when I was told that the three month post radiation/chemo scan showed residual and new spots of cancer and the new chemo I was about to start would take my hair. I sectioned my hair into eight small sections (it would have been twelve, but I was rocking an undercut), had my mom and sisters braid them, and each member of my family was able to cut one. I was very excited so the sadness that occurred took my breath away a little further with each tear. I felt the hurt in each of my family members now that my diagnosis was a lot more real to them more than my own hurt. I did not plan for heavy emotions, but I also didn’t plan for cancer. I went to a friend’s salon where she sculpted the remaining hair into a spunky alternative pixie and gave me a kick-ass pastel pink color job. I mailed the braids off to Wigs for Kids on the way.
I stripped the color every week and replaced it with whatever I had in the color cache in my garage. From soft pink to day glow neon pink. I also took that time to document and demonstrate how devastating bad shampoo and hot showers were to fashion colors. Each color lost all of its shine within a shower or two, which made stripping them with direct dye removers very easy. After neon pink I had a pastel teal. Then I started chemo. I colored it again to deepen the teal to a truer variation to more accurately depict half of the colors for cervical cancer awareness. White was out of the question at this point.
A week after that first infusion, I started seeing teal hair shed off on various surfaces. I was able to pull small amounts out when I ran my hands through it, but I had a request from a special niece to get to purple. I was scared to drag color through all of it, so I added a splash of violet to my bangs. Being able to play with my color and have that to look forward to made it easy to let it go. Possibly because by the time it started coming out, I was getting sick of the work it took to change color or keep it up.
I was in my pickup on the way to spend a weekend with my mom on a trail ride when running my hands through my hair resulted in a handful of fallout. I had another four hours on the road and keeping my hands off it was torture. I pick and I pull as I fidget, so it was incredibly difficult. We had family pictures planned a week from then and I really hoped to have hair for them. At one point on our trail ride, a friend rode up and rubbed her hand over my hair as she complimented it. All I saw was a huge chunk of my hair flying away in the wind and I kept a hat on after that.
Jodi’s three year old showing his barber skills
When we got back from the ride, I decided it was time. I was tired of seeing my hair attach itself to everything but my head, and I didn’t think it would survive a much-needed washing before pictures. We headed to my sister’s house and she took photos while my husband and three year old took my brother’s terrible beard clippers to my head. It was a mess and a struggle and hilarious. I ended up pulling out the remaining strands and then going over it with his clippers. It was incredibly satisfying and this time, I didn’t feel sadness. I felt free. Our pictures turned out gorgeous and I am very happy to have done the chop before them.
That was five months ago, and I still catch myself wanting random cool hair trends I see on Instagram for an instant before I remember that one must first have hair. I do have two wigs that I was so graciously given by my infusion center’s recourse center. I rarely wear them because my head has always been so sensitive to pressure. I will endure them if an occasion calls for it, but honestly, I am much more comfortable bald. Wigs are not cheap, rightly so, as the time and talent it takes to create them is unfathomable. Some insurance does pick up the cost and there are many programs available to patients to be able to afford it.
There are more than a few options when it comes to picking out a wig. Synthetic wigs are a bit more affordable than human hair and have come leaps and bounds in appearance. Lace front and lace tops offer beautiful parts and hairlines. I prefer my lace top over the other any day, as it is much cooler and not nearly as heavy. The styles offered are infinite! I had a blast trying on some within my scope and at least one that was the furthest out of my style spectrum I could get. Curly, straight, long, short, any color under the sun, wigs are a blast! Now I don’t have to deal with the bulging of natural hair underneath. Small wins do add up, you know.
I know plenty of people who would agree that losing their hair is a huge amount of stress and suffrage. It seems to grind mud into the never-ending wounding of cancer and treatment side effects. The vast majority of women see it as a direct hit to their femininity, especially those with a diagnosis that effects their reproductive system, such as cervical cancer. Many treatment options for cervical cancer leave the patient sterilized and slingshot into menopause, like myself, diagnosed at 29. There are incredible numbers of young women navigating this hell. But your perception of this hell 100% affects how terrible it actually is. I honestly had a lot of fun losing my hair! By taking it on my terms and in my own plans helped, and it takes so much time out of my showers and getting ready not having to worry about my mop. Not everyone has accessibility to products to change their hair every week before it falls out, but I guarantee if you ask your stylist to grab the products and give you a small lesson on how to apply, they would gladly set you up. If they don’t, reach out to me at [email protected]. I’ve got your back!
Before I lost my hair, I heard about an organization called Bald is Beautiful and their mission to normalize women with hair loss sang to my heart. They have many resources to aid your path to being bare. I also highly recommend seeking out the resource center wherever you are receiving treatment. Local salons may also have a good idea about wig and hair replacement options in your area. I have not met a soul involved in the wig community that wasn’t completely ecstatic to help make your transition to being bald an easy one. So, whether you’re like me and bear the bare or you like to switch up your wig and hat styles every other day, know that you are gorgeous and absolutely killing it! Slay girl, slay!
Jodi slaying it
Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.
My name is Jodi Madsen. I am a thirty-year-old mother of two toddlers living with stage IIIC2 adenosquamos cell carcinoma of the cervix. I completed weekly chemo and daily external radiation for eight weeks in the spring of 2021 followed by four internal radiation sessions.
I started a new cocktail of chemotherapy in August 2021 consisting of Avastin, Carboplatin, and Paclitaxel every three weeks. I wanted to share what a day in the life of someone in active healing looks like, because I know how terrifying the word chemotherapy can be.
November 1, 2021
10:00 p.m.
I take five tablets of 20 mg dexamethasone and try to settle in enough for my brain to allow me sleep before the medication kicks in and I am brimming with energy. I am loading steroids before the six-hour chemo infusion I have tomorrow. I then arrange my next dose on the nightstand and grab a book. My husband is snoring beside me in our queen bed at the hotel about ten minutes from my treatment center.
We made the seven hour drive to South Dakota from our home in northwestern North Dakota a few days prior to drop my toddlers off with my mom, then the seven hour drive from there to Nebraska Medicine in Omaha the day before. In an effort to forget that I had to miss Halloween with our two young boys, we got last minute tickets to Hamilton at The Orpheum. I was honestly still buzzing from the theater and probably wouldn’t have known if the steroids kicked in. Before I know it, the clock reads midnight. I set my alarm and revel in the wonderful news I was given via MyChart update from the CT scan taken earlier that day. Shrinkage and no new growth, all in barely comprehensible medical terms that would be translated to mostly English at my appointments in the morning. I stay up for at least another hour thanking everything I know as well as trying to wrap my head around what a cancer free life could possibly look like for the first time in seven months.
November 2, 2021
4:00 a.m.
I am gently awakened by my husband to take my next dose. I begrudgingly welcome the constant headache brought on by the steroids. Five more tabs down the hatch and back to sleep.
6:15 a.m.
Another alarm and small nudge. “Are we going out to breakfast before your 8:15 appointment? If so, we have to get moving.” Knowing roughly what time it is and the small amount of sleep I was able to get I quickly decide that we will eat at the continental breakfast downstairs. I had a book that I wanted to pass along to the resource center at the Buffet Cancer Center and bring the gal running the place, Terri, a caramel macchiato. There was an instant bond between us when she helped light a spark within me three weeks ago. She helped pick out some wigs that transformed me outside and in. I wish I could send everyone on a cancer journey to her, her light shines brightly far beyond her services and I am grateful to have stumbled upon her office because she is sincerely so wonderful. I tell everyone to seek out their treatment center’s recourse office or center, visiting adds a portion of pure happiness to my trips in for chemo. Also, obviously, they have incredible resources.
7:50 a.m.
We enter Nebraska Medicine’s Buffet Cancer Center to find about 30 people waiting their turn to go through COVID prescreening. I believe we were met with a wait to calm myself and slow down the rush we were in. It is amazing what you see when you know The Universe is, in fact, conspiring for your success. In order for us to get over to see Terri, we had a lot of ground to cover quickly. We got through the screening at 8:03 a.m. and we were at Radiation Oncology in six minutes. Win! My nurse was at the reception desk and took us to get my vitals immediately. I hadn’t seen her or anyone in RadOnc since May and it was so great to catch up, even if she was very surprised to see my hair in a bob as opposed to the mid-back blonde locks she had last seen me wear. The surprise escalated when I told her it wasn’t mine and went on to update her on my current treatment status. She is one of those nurses that was, no question, destined for the job. My husband and I both grew an awesome relationship with her back in April when we saw her a few times a week for brachytherapy.
8:37 a.m.
My Radiology Oncologist, Dr. Wahl, came in and answered my questions and touched on concerns about my scans. There were two lymph nodes that popped hot in my PET scan in July, one left lower cervical (in my neck) and the other along the right pelvic wall. Both showed considerable shrinkage. I knew this information already from reading MyChart, but hearing the words directly from an oncologist hit differently and we are overcome with happiness. He tells my husband and I that this is a fast reaction to chemo and they are very pleased with progress. I was granted the luxury of skipping the pelvic exam they had planned because my last one was about six weeks ago. Privacy is a luxury that I don’t really remember. Through having a cancer related to a reproductive system, telling the world about said cancer, and having kids-privacy is a mere memory.
10:15 a.m.
Checked in to the infusion center and we are taken back after about 15 minutes. My platelets have been low in the past and have been dancing on the line of being too low to receive my treatment the last two times. Since our home is 10 hours away from Omaha, I had blood tests done on the base at home Friday and sent down here to find out that my new practice of being mindful, intention, and concentrating energy on raising them has worked wonders and they are high! I did not have a urine test done at the base to make sure there is not protein present and my kidneys are still doing their job, so that is priority before I can get my chemo started.
11:30 a.m.
My nurse, Kelsi, comes in to ask me for more urine to send down to the lab as it was the tiniest amount short, like half a milliliter short, and gets my pretreatment drips ready. One antinausea tab, two Benadryl, more steroids, and a long term antinausea drip. As the half hour of pre-drugs is finishing up, we hear the Urine Analysis shows negative for protein and we are set to start chemo. First up, Avastin. She’s like the kicker chemo. Not necessarily the star of the show, but has been proven to aid the other two in doing their jobs. Nate has gone to grab us lunch from downstairs. The new responsibilities of the role he was flung into are executed wonderfully and more efficiently every trip we make. He arrives just before the lines start at the food court and has lunch to me before the next chemo switch.
12:30 p.m.
My knight roamed the hospital halls and brought me a burger and salad that I flew through. In comes the star, Paclitaxel. Forgive me for this Benadryl induced comparison, but she is the Cady from Mean Girls in the pack. Shows promise of having good intention, and just being a cool chick. She’s here to help and is down to go the extra distance to get her job done, no matter how malicious the nature may be. Next thing you know there is a schoolwide “Come to Jesus” and she’s coincidently right there when you get hit by a bus… without hair. Did she push you? No one may ever know, but in the end, shows heart and progress no matter the crap side-effects that follows in her wake. All of the exhaustion from the rush of the day hits at once and I stash my computer and get some rest after about an hour of writing and catching my day up.
4:15 p.m.
I take my time in returning to the world of consciousness as Nate does the same. Kelsi is about to switch out my chemo and start the last, Carboplatin. It is a half an hour drip and I spend the rest of my time at the infusion center scrolling and chatting my husband up while he does the same.
4:50 p.m.
My port is de-accessed and we are free to go! We head to a small shop to get overwhelmed browsing books and trinkets. I spend far too long staring at their wall of books before I realize I have a meeting in half an hour. We rush back to the hotel and make it just in time.
9:00 p.m.
I am settled into bed next to my snoring soulmate with a book that I have been working on finishing for entirely too long. Our suitcases and cooler are already packed up and tucked away and ready for the drive back to our boys. What a good set of days. So much laughter, some tears, an uncountable amount of relief sighs and internal celebration, great conversations, and a treatment plan that IS WORKING! The way my husband and I both approach even the smallest aspects of life has changed in about every way imaginable. We look at things through lenses we didn’t know existed a year ago, and this hardship has brought out the biggest beauties in the smallest moments. Tomorrow I will hug my kids and tell them that yes, Mommy is getting better.
Jodi & Nate
Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.
