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There’s Nothing “easy” About Cervical Cancer

Many of you have probably already read my first blog “From Mother to Mother” or even “My Story” on Cervivor.org, so I’d like to get straight to the point about living with recurrent/metastatic cervical cancer.

“Easy and best cancer to get,” was what I was once told by a surgical nurse. Well, let me tell you, there’s nothing “easy” about cervical cancer and there’s nothing “easy” about knowing I’m going to die from it

I’ve been fighting cervical cancer for almost three years and it’s been pure hell. Surgery after surgery, plus infections that land me in the hospital usually for a week straight each time. And at Massachusetts General Hospital on the 21st floor – the Phillips Unit, just for women with gynecologic cancers – the nurses know me by name. When they’re at the nurse’s station reading who’s being admitted, before I’m even up from the ER, and they see the name Jillian Scalfani, they know exactly who I am. 

Well, guess who’s back. My cancer, my second recurrence, just as I knew it would return. It’s never just going to go away or ever be cured, not in my lifetime at least. Recurrent cervical cancer has no cure, just temporary treatment to keep it at bay, and to be quite honest cervical cancer doesn’t have many options. But that doesn’t mean that I can’t have hope and drive, because I do and I’m literally giving it my all to keep going.

I’m doing everything I possibly can; I’m advocating for myself, constantly reading information on new cervical cancer research, thinking and looking for that next step. I’m on clinicaltrials.gov for hours at a time looking for a trial suitable for me. Which isn’t easy by the way, even though it’s a trial for cervical cancer I may not fit the study’s criteria. When it comes to these trials, there’s long work-ups and I know this because last October I had to abort the study I was in.

Last May is when I found out about my second recurrence. So that’s when I decided, if my cancer isn’t going anywhere a clinical trial is definitely worth a shot. This time not only did my cancer come back, it metastasized to my bladder. I also have a conglomerate of several nodules on my left pelvic side wall and an implant behind my bladder.

While I was waiting to get into a clinical trial for immunotherapy at the John Hopkins Hospital-Sidney Kimmel Cancer Center in Baltimore, Maryland, I also had genomic testing done on my original tumor sample. This test showed I had a cell amplification called EGFR, epidermal growth factor receptor. It’s not a mutation, but is very similar to one, and it makes my cancer grow faster and have a poorer prognosis.

Jillian, Tamika and Iman

Every two weeks I would fly down to John Hopkins Hospital and get my experimental infusions, called Opdivo and Yervoy. For most of my infusions, I would meet Tamika Felder, the founder of Cervivor, at BWI Airport and she would join me for treatment. Sometimes I would have to stay for a few days, due to biopsies or extra lab work needed for the Bristol-Myers Squibb drug study. So she would take me out to show me around, we’d go out to eat and enjoy each other’s company.

During my immunotherapy, I had some issues I thought were minor, but of course that wasn’t the case. Off and on I was having upper abdominal pain and a hard time moving my bowels. So after many infusions I had my scan. I had no new growth, but my tumors had grown by 22% and we were hopeful it was pseudo progression. With immunotherapy pseudo progression is common, meaning your tumors appear to be larger because the T-cells are infiltrating the tumors before they shrink.

As I continued with treatment, I was still having bowel issues so my team decided to do a colonoscopy. That’s when we discovered the tumor behind my bladder was now invading my colon, which wasn’t visible on the scan. So, unfortunately, immunotherapy didn’t work for me. I had to abort the trial and return home to do more chemotherapy that didn’t work either, but kept the tumors stable. That’s when we decided I needed a colostomy bag. Not only was I devastated that immunotherapy didn’t work, I now had to face another surgery. If my bowels were to rupture, I could have become septic, which can be fatal. 

Recovering from colostomy surgery was painful. I never had a C-section, but I feel as though I can now relate to women who have. Every sudden movement hurt so badly; every time I had to cough or sneeze it was just torture. Sounds like fun right? Does this sound easy? It gets better…the chemotherapy I was on after immunotherapy failed and made my hemoglobin levels so low that I needed a blood transfusion. I had two transfusions, but it was the second one that I had a rare but serious reaction to. I remember being home after the infusion and feeling really sick, like the worst flu ever. The pain was so bad, along with other

Jillian and her friend Lisa

symptoms so I called Massachusetts General and explained what the day entailed and they told me to come in immediately. So naturally when an ER trip is needed, I call my dear friend Lisa and she comes over to bring me to the hospital.

I remember, while waiting for Lisa, hugging and telling my nana how sorry I was. I told her I really thought this was it, my body was rejecting everything and I really thought something terrible was going to happen. We just hugged and cried; I told her I was afraid to die and, worst of all, to leave my children. My nana was crying so hard saying she wished it was her and not me and I died a little more inside, knowing how much she was truly hurting too.

I’m now on another chemotherapy cocktail, Taxol/Carbo. I’m going to lose my hair again and I’m extremely nauseous a co

Jillian and her Nana

uple of days after treatment, but I’m determined to keep fighting and to stay as strong as I can mentally, physically, spiritually and, most importantly, emotionally. Not just for the sake of me, but for the sake of my children. I’m pretty open with my 14-year-old and he knows everything that’s going on; he may not entirely get it until the worst happens, but I feel as though being open and honest will be the easiest way for him to cope.

I’m trying to set an example for him and my youngest one, he’ll be five in May. I want them to know that sometimes life isn’t easy, and when we face these hardships we have to use the pain for fuel and keep going. This situation is extremely hard for me; I’m angry, sad, hurt, confused to how and why still. After never missing a pap test, never testing positive for HPV but having it, HPV is irrelevant at this point, I have cancer that’s going to take my life. I truly have the weight of the world on my shoulders and then some. I have personal issues that I don’t want to disclose going on that no mother, or no one dealing with cancer, should have to deal with.

                                                  So what’s so EASY about cervical cancer?

Jillian and her boys

Absolutely nothing! The treatment is horrible, the long-term side effects from chemotherapy, radiation and surgery are as well. The PTSD that we suffer from is very real, not to mention how much our loved ones suffer. Every day is different for me. Every day I allow myself to cry and grieve, but at the same time I have to remain strong and I do. I’m a fighter, no matter what the outcome, it’s in my blood.

Knowing I’m still fighting the unknown, knowing I’m still willing to be a guinea pig, knowing my loved ones are suffering, and knowing my kids won’t have a mother one day to a preventable cancer isn’t easy at all.

 

 

Cancer Broke My Cup

Sometimes I still can’t believe that I even have had cervical cancer, much less still dealing with the fallout from it-complications from surgery, side effects of radiation. I intellectually know that it happened, but there are moments where I look at myself and my life and go, “Wait…what?” Sometimes I actually look at and feel my radiation tattoos before getting in the shower. Yeah, I know that is weird, but there are times I need to connect with it — I need to stare at my markings, touch my port, my scars- to physically say, okay this happened and to remember just how far I have come. To have a slight even if for 20 seconds-mini celebration that I am here-that I have endured.

See, I believe we all have a choice when it comes to how we are going to look at our cancer, much how we all have choices in how we view anything in life. Are we going to be the cup half full girl? OR are we going to be the cup half empty girl? Before cancer-the answer was easy for me. I definitely was a silver linings person, taking lemons and making lemonade. I have had laugh lines since I was 10 and have always been able to find something to smile about. But enter a cancer diagnosis..enter in chemotherapy and radiation…enter in internal radiation…enter in infertility…enter in surgery…enter in (fill in the blank).Suddenly, being the cup half full chick was not as easy. I had faced some really tough things before, but never was my life on the line. Never had I been told, “You can either do treatment or live for about 3 more years.” Of course, I had thought about life after death, but NEVER had I really truly sat with it as a possibility. And what would treatment look like for me? Could I even do it? I remember sitting there with my oncologist when she was explaining to me where the cancer was, giving me my stage. She started explaining the action plan and what was going to happen to my body. Time stood still as I looked at her mouth moving. Nothing was really the same after.

Now back to that choice. I had to consciously ask myself, “How are you going to approach this?” I was scared of all of the unknowns. I had never even been in the hospital! Was I going to STILL be the cup half full girl? I remember coming home alone that day and crying one of those big cries — where you just lay and cry, and cry, and cry. The kind of cry where you get up and look at yourself in the mirror and your face is puffy and you have a sinus headache. That’s where I was. Half full? I was afraid and devastated. How could I even be a half full girl? I felt like someone had just taken my cup and shattered it on the floor. My cup was broken. Dreams were stolen. I was afraid. Cancer had come in my life like a thief.

Yet. I still had this choice to make. Cancer had broken my cup, but I was still here. Life would never ever be the same, but there was a plan forward. It was a hopeful plan-not without risks and not without pain and loss, but there was a plan.

There is a Japanese art form, in pottery called “kintsugi.” It is a process that embraces damage-where the broken vessels are not discarded, but where broken pieces are mended. The artist takes the ceramic pieces and mends them with a lacquer dust of gold, silver, or platinum. The flaws of the piece are actually highlighted and not hidden at all, often resulting in a piece that is far more beautiful than the original plan. The art form ties in the Japanese philosophy of “wabi-sabi” that embraces the flawed and imperfect, that actually emphasizes rather than hides the broken pieces.

So as I looked at the pieces of my broken cup-this vessel I had plans for, this vessel that was not operating on the original plan; I chose to start picking up the pieces. The cup does not look anything like it did before, but just like in wabi-sabi, the more I embrace instead of hide, the more beautiful it becomes. I have to constantly remind myself of these truths. Oh how I wish, it could be where I just pick it up mend it and move on. For those of us who have faced cancer-we know that it’
truly never “over.” I feel like mending my cup is a daily choice. I find myself even now, while being declared “cancer free” in October, still very much dealing with complications from a life-saving surgery-complications that will more than likely be part of my life in some way from now on. In addition to the reality of “scan-life” and other life altering side effects from treatment. So the question constantly remains for me, for us: Your cup may be broken like mine-will you leave it shattered or will you begin to piece it back together with gold and platinum, turning your brokenness into purpose and beauty? The choice is yours.

We need to talk. We need to have conversations about cervical cancer and prevention. Let my simple t-shirt design, help you begin that conversation AND help me pay both past and current medical expenses related to cervical cancer.

 Unfortunately, I am in need of another surgery due to post radiation side effects, from a life-saving hysterectomy. This surgery will repair significant damage that has been done to my bladder and will require a 6-8 week recovery. Just as with the past leaves I have I had to take, I will not be getting paid during this period. Donations through my t-shirt campaign can significantly help with expenses and you’ll look super cool! There are hoodies and t-shirts for guys and girls! https://www.bonfire.com/start-the-conversation/