Survivorship

I Found Cervivor One Day After My Hysterectomy

On April 2, 2018 I was diagnosed with cervical cancer stage IB2. 

I remember thinking something was wrong. When I woke up in the middle of the night, I discovered I had been bleeding through the overnight protection I was using during my menstrual cycle. It was awful. I was so scared. I went through five pads in one night. I really thought I was going to bleed to death. This is when I knew something was not right. 

My last normal cervical cancer screening was in 2016 when I was living in Florida. I had missed my gynecological appointment in 2017 because I had recently moved to Charlotte, North Carolina. However, that was no excuse. I am usually very proactive with my cervical cancer screenings and I never miss an exam. 

I went to see my doctor on February 1, 2018 and directly told her about my menorrhagia. She seemed concerned. She immediately scheduled an ultrasound and a uterine biopsy. These both came back positive. I was feeling uneasy at this point. She suggested a hysterectomy. I felt extreme sadness. 

I felt alone even though my husband was right by my side praying for me, and with me. He said, if this surgery will make you feel better, let’s do it. My prayer to God was Psalm 41:3 “The Lord sustains him on his sickbed; in his illness you restore him to full health”. 

Even after my hysterectomy was scheduled I kept wondering, ‘why me?’ But I remembered God had a plan. So I prayed, “Lord, you are the Great Physician. Please heal me.” I truly believe in the power of prayer. My faith is very important to me and it means everything. I lean on Him in times of trouble. 

March 23, 2018 was the day! The preparation went really fast. All I remember is the beach ball smell from the oxygen mask. My surgery went well according to my doctor. I woke up feeling groggy from the medicine. I went immediately into menopause. My husband stayed with me overnight at the hospital.

Amy after surgery

After I was comfortably at home, I started researching and I searched Google using “Hysterectomy Recovery Time.” Along with side effects like menopause, and a whole long list of other things, I found Cervivor. This was one day after my hysterectomy! I found women speaking openly about their journey having cervical cancer and about hysterectomies. I was quite interested.

I kept reading different survivor stories. I could see myself in all of their stories. I did not virtually meet anyone as of yet, but looked on from afar. It took me a few months before I joined my first Creating Connections gathering. I called in from my mobile phone because I wasn’t as familiar with Zoom as I am now. And I was so nervous.

I remember Tamika saying, ‘I see a phone number without a name. Does this person want to introduce themselves?’ She repeated my number out loud and I said to myself, ‘oh,  that’s me!’. I spoke up and said, “I am a survivor of cervical cancer”. I think my voice cracked. I was so nervous. I also shared that I had just had surgery, went through six rounds of chemotherapy and 30 rounds of radiation.

I received so much love and kindness from these ladies. They understood me. They made me feel safe sharing what I had been through. I felt I like was not alone. Many of these women had also been through hysterectomies. I had found my people. My community. 

Amy ringing the bell

What I have learned is I am able to tell my story and I am not afraid to do so. I had reached out to my local TV station during Cervical Cancer Awareness Month in January 2020. This was something totally outside of my comfort zone. A few days passed and my nerves got the best of me. It was the day of the interview.

During the interview I shared my diagnoses and the fear I had when I first heard the words ‘cervical cancer’. The reporter asked what treatments I had and I informed her that I had chemotherapy, radiation and a hysterectomy. The latter made me really sad because I always wanted to be a mother and still long for it someday. I shared that even though previous pap tests had been normal, I had missed my 2017 screening. I believe if I had gone to my appointment, all of this would have been prevented. I talked about the importance of not missing your cervical cancer screenings. I ended with telling others that ‘you are not alone’. This interview played an important part in helping me share my story on a larger platform. The support and love from other Cervivor community members has been wonderful. They are truly like my new family. 

Some of my symptoms of cervical cancer were abnormal bleeding and heavy bleeding during menstruation. Also, bad cramps and clotting. I thought this was all normal, but as it progressed, I knew this was unusual. Today, I am four years cancer free! And I am a Cervivor advocate. Cervivor helped me find my voice, and I know the importance of making my survivorship count. I want women to know cervical cancer is preventable.

Amy Knox is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy, by reading her Cervivor story here.

A Day in the Life: A Cervivor on Chemo

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.