Caregiving: A Love Story

I wanted to take a moment to share my love letter to the caregivers in our lives, family or chosen, who perhaps unbeknownst to them, are the ones who give us the strength to put one foot in front of the other day after day.

Cervivor Erica’s husband JR, had talked with Cervivor here about his feelings of helplessness but through his unique caregiver lens you feel that special bond that forms when a family is faced with such a life alerting shift.

Love may conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.

After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Care nurse demonstrating bag changes. Then at home *he* was the one who changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.

He also sat beside me and held my hand each time my oncologist told us of a reoccurrence or metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.

My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them to share the big and small moments life brings.

My parents and my brother, along with my chosen family, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love abundantly and without hesitation.

These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.

Whomever you surround yourself with during the hard times, know that their love is unconditional but they struggle with watching someone they love suffer and they want more than anything to help get you to the other side of your pain. Keep the door open for those who feel like sunshine.

A beautiful quote that sums up caregiving to me is this one…

“When you go out into the world, watch for traffic, hold hands and stick together.”

Carol is an 11 year metastatic, recurrent cervical cancer thriver and Lead Cervivor Ambassador. She is also a double-ostomate and is passionate about dispelling stigmas as a cervical cancer survivor and ostomate.

Happiness Through Hair Loss

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 phillipshair@gmail.com. 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.