As part of my #CCAM posts I asked some friends and family to tell about my cancer diagnosis from their point of view. Today we will hear from my mother, Sue Schuppert, as she reflects about what it was like when I was originally diagnosed and during my continued treatments. I cannot fathom having a child go through what I am going through. What she doesn't realize, is that it takes a pretty strong person to watch a child (even their adult child) go through cancer. I think she is pretty strong too! - Erica
The hardest part of being a parent is watching your child go through something really tough & not being able to fix it for them. Erica having cancer has taught me to be more forgiving of others, especially of strangers. You never know what battle they may be fighting. To look at Erica you'd often never know that she's sick. Although distance to Indianapolis from Southern Indiana (where I live) is not far, a one day trip isn't long enough to spend with Erica & offer any assistance. I just want to be able to help more. I'll never forget the day that Erica called me to tell me that she had cancer. It was a dreary day, I was at work and overlooking the Ohio River as we spoke. The words that she spoke gave me shivers. Why my child? It should be me instead of her! I raised my kids to stand up for themselves, to not let people push them around. I had no idea that one of them would have to fight a battle like this, especially three times. Erica has always held her head up high with the intent to beat this horrible beast. She has been an inspiration to us all.
As a parent, my emotions are so mixed. I'm glad to see Erica very inspired to be an advocate for cervical cancer & to be the best mom and wife, but I'm very sad too. Why does my daughter have to go through this? I want to rip this cancer from her, my daughter should not have to deal with this cancer!
I'm not going to give up and neither is Erica! She has too much to live for, her life, my grandson (her son) Wylee & my awesome son-in-law (her husband) JR. JR has been a blessing to our family. Has been the best husband, father and caretaker for Erica. I'm glad that he is there to share this journey with Erica & help her in many ways.
This past weekend, I along with my other daughters, had the awesome experience of volunteering at Cervivor School Hoosier with Erica to support her. It was great to see her so happy and surrounded by people who are or have gone through what she is. Her new support group is an awesome mixture of women & men (JR, Scott & Dr. Hunk!) The guest speakers were very informative shedding light on information we didn't know.
I'm so proud of Erica being an advocate for cervical cancer awareness. She's fighting this monster with her head held high and full speed ahead! I see her as a great inspiration to other women going through the same battle.
#CCAM is in full swing and today I want to share with you the story of a Cervivor Ambassador sister of mine, Danielle Sepulveres! She put out a great blog post this week about Cervical Cancer Awareness Month and how the princesses understand the importance of visiting your healthcare provider and taking measures to prevent HPV and cancer. You should understand the importance of these things too!
I asked her if she could tell us a little about herself so I could use it on the blog today, I also wanted to share her special post with you. Please take a moment to check out her fabulous blog post, as well as the time to read her story below. - Erica
“I’d rather regret the things I’ve done than regret the things I haven’t done.”–Lucille Ball
This quote is very important to me. For most of my life I’ve been more of the mindset that there’s no such thing as a “regret”. I prefer to interpret everything as an experience that leads me to new knowledge or providing a lesson necessary to continue onward and hopefully upward.
I spent most of my childhood into early adulthood trying to wrap my head around always doing the right thing. With a Jewish mother and Catholic father (and known amongst my friends as a Cashew or Pizzabagel) I had two times the guilt weighing on my conscience. And I barely ever even set foot into a religious establishment!
As strait edge as possible, I didn’t even have a legitimate experience with intoxication (that’s my obnoxious way of saying getting drunk) until I was almost eighteen. Meanwhile most of my friends had been experimenting with alcohol since the age of thirteen. And when it came to sex? Forget it! I believed for a long time that I would wait for marriage since that seemed like the “right thing” to do. Health class in school perpetuated this idea in the manner of scaring the hell out of me with only one of two options resulting from sex. Pregnancy or death. Literally. That was what I gleaned from health class. Sex before marriage equals pregnancy or death. Or possibly both. Coupled with my father’s infamous sex advice of “AIDS will kill you and herpes is forever” before shipping me off to college, I was really only equipped to make one decision. And that decision was to wait.
So I waited.
And then at the ripe old age of twenty-three I fell in love for the first time. He was twenty-eight and swooped in on me, tall, handsome and smooth–which coincidentally was even his nickname (and should have tipped me off). We had an intense physical attraction to each other, which in my inexperience coaxed me into believing he loved me as much as I loved him.
I could go into the details of our tumultuous romance but suffice it to say that it was a dangerous combination of love and infatuation that I believe happens to everyone at least once in their life. The kind of intoxicating love that makes every decision tie back to that person and you start to lose your sense of self and who you are without them.
During this time I went for my annual check-up at my gynecologist and was told that something had come up irregular in my Pap test. A couple more Pap tests and a biopsy of my cervix confirmed that I in fact was positive for HPV and potentially at risk for cervical cancer if my body didn’t clear it.
WHAT. THE. HELL.
That pretty fairly sums up my initial reaction to the diagnosis. I had waited. I had slept with one person. I had used condoms. I had been monogamous. Where did I go wrong??!
And the answer is that HPV doesn’t care. It doesn’t care if you’ve slept your way through a frat house in college or if you’re a fifty year old woman who’s been married to the same man for twenty two years. Or if you’re twenty-three like I was and think you’ve found the guy who will put a shiny diamond ring on your finger. That was my first wake up call. I had been in my smug little sheltered world of making “right” decisions and now was thrust into a parallel universe where people assumed I slept around and I personally felt damaged and alone.
After two unsuccessful rounds of cryosurgery–liquid nitrogen being shot up inside me to freeze the pre-cancerous cells and one LEEP procedure–a minor surgical removal of the tip of my cervix–I was soon out of the woods in terms of danger. But my life felt completely different.
I realized part of my anger, sadness, frustration and numerous other emotions stemmed from an adolescent urge to stamp my foot and yell, “It’s not fair!” It’s not fair that in my early twenties when I was just discovering myself and what I wanted in life, this huge unexpected roadblock came out of nowhere to derail my confidence, my health and potentially my future. How could I date again after this? How could I not panic the next time I wanted to engage in an intimate relationship? What would happen when I got married one day and wanted to have children? I didn’t have any answers.
But life isn’t fair. We all know that. But we also feel invincible when we’re young. HPV was something that would happen to someone else, not me. And so was cancer. But I have friends who have had radical hysterectomies at the age of twenty-five because of cervical cancer. They too believed, these are the kinds of things that happen to other people. Not them.
I truly believe that one day with all the information we have and the building towards education and awareness, one day cervical cancer won’t be something that happens to anyone anymore.
So I don’t regret what I experienced. I don’t regret all the nights I cried myself to sleep, terrified of test results and doctor’s appointments and uncomfortable procedures. I don’t regret meeting the guy who would turn out to be emotionally manipulative and flip my life upside down at such a young age. I feel lucky that I cleared the virus, and learned to be an advocate for women’s health.
I would only regret if I had chosen to not speak out. It’s important to me to make sure no one ever has to feel like I did. And I don’t even regret the crushing loneliness I felt at that time. Because it’s that feeling that drives me to continue onward in this journey. And hopefully upward.
I want to tell you a little bit about my port. I love my port! It sounds crazy, like who would love something like that?
You are probably wondering what the hell I am talking about! Lets start simple, if you've never had a port you probably don't have any idea what I'm talking about.
I have the Bard PowerPort. I refer to it as my port and there have been countless occasions where I have been able to use it as a starting point of discussion. Discussion which ultimately leads to me having a quick little educational chat with the individual about cervical cancer. That is a total bonus of the port for me, since I am focusing on advocacy. That is obviously not the reason I choose the port in the first place. I choose the port because it was going to help me beat cancer!
I can remember vividly when I was told my cancer had returned and I would need to start an aggressive treatment regimen including chemotherapy and radiation. One of the first things I thought about what was all those needles! You see, when I had my trachelectomy in 2012 the nurse went to put my IV in my hand for surgery. I remember that when she went to hit the vein it "rolled". Instead of pulling the needle out and starting over again she twisted the needle. It has mentally scarred me, to this day. I knew that I wasn't up for an extensive treatment plan which included having to be poked repeatedly with needles. I signed off then and there to get my PowerPort placed. My gynecologic oncologist 100% agreed with my choice and got it scheduled right away so we could get started with treatment. We talked about how it would help "save my veins" because the chemo wouldn't be running through them. We talked about how I could use the PowerPort as my access point for surgeries, hospital stays, and scans. I was on board!
So, what is a port? A port is a device which is placed under your skin and directly connects a small flexible tube into a blood vessel. It is implanted under your skin and then accessed via a special needle. This access point is used instead of an IV access point. You can receive chemotherapy, fluids, medication, IV infusions, and have your blood drawn all through your port.
How is a port put in? Mine was placed under my skin in an outpatient procedure in May 2014. It was a very quick procedure. My gynecologic-oncologist scheduled it with a surgeon who specializes in this type of surgery.
Will I notice it? Looking at my picture in this post, you can see my port. It is above my right breast near my shirt line. When looking closely, you can even see the protruding bumps which are telltale of a PowerPort so the needle can be placed accurately. If you look really closely you can even see the catheter that runs into my vein. Everyone is going to have a different comfort level with this. As I said, I love my port. It signifies that I am not just going to sit around and let the cancer kill me. It gives me an easy way to transition a conversation into a piece of advocacy. It is a part of me, and I embrace it.
Will it hurt? Thinking back to when I had my PowerPort placed in May 2014 there was some tenderness. I can remember wearing tank tops with one sleeve down during the healing process so that it wouldn't be irritated. I can remember back to a time, when my port was newly placed, at the park with my son when we were racing and I felt like it was "bouncing" under my skin. Not pain, but absolutely a strange sensation. Now, I rarely notice it is there during normal activity and when wearing normal clothing.
Why should I get a port? I know women who didn't get a port, who don't regret it. I know women who didn't get a port, who do regret it. I think that this is a personal choice you need to make with your healthcare provider. However, personally, I would get the PowerPort again in a heartbeat. Everyone expects their cancer experience to go as planned. No one expects to be the small percentage that has a complication or has the cancer return. I have had my port accessed countless times. Thinking about my course of treatments since I had my port placed in May 2014 I've had chemotherapy, PET scans, radiation scans, IV infusions for weeks at a time, hospital stays, blood draws, and surgeries. All of these times I've been able to use my port as the access point.
Readers - go and like these two lovely ladies Facebook pages! Cindy took my green dress picture in this post and Gretchen took the picture that is featured at the top of the post. Show them some love! They have taken countless photographs for me and they are featured frequently on the blog.
Cindy Johnson Boudoir Photography & Gretchen Boyd Photography
I am excited to announce that Uno Pizzeria & Grill in Southport, just south of Indianapolis, is doing a month long fundraiser in honor of Cervivor.
Do you want to participate? Simply print out this "Dough Raiser" picture and take it in to your server -OR- tell your server you are there to support Cervivor and they can give you a paper to attach to your receipt. It is really important to make sure you get the paper attached to the receipt so the donation will go to Cervivor.
This fundraiser is going on the entire month of January for dine-in or takeout!
On Thursday, January 21st I, along with some fellow Cervivor Ambassadors will be at Uno Pizzeria & Grill. We are planning to have someone there from 5:30 - 7:30. We'd love to see you there!
Today was Cervivor School Hoosier! I'd love for you to checkout social media and see some of the fabulous things which took place today!
Please check out all the social media posts from today:
I really appreciate all of the support I have been seeing for Cervical Cancer Awareness Month! Today I wanted to take a quick break and ask about you. What is your story? Are you a cervical cancer survivor or patient? Are you one of my family members or friends? Do you have a blog of our own? Reader - who are you?
I think it is important to note, every story matters. I cannot describe how informative it can be to read another individual's story. Typically, there are connections which can be made that you don't even think about to begin with! I would love to hear from you and find out your story. Check out these questions to get you started in telling your story:
Are you ready to share your story? I'd love to hear from you in my comments.
Are you a cervical cancer survivor or patient? Cervivor would love to hear your story too, there is even a place you can go here, on the Cervivor website, to easily submit your story!
Lets take a look at the top ten cervical cancer symptoms to remember, symptoms which are warning signs and can save your life! Over the past two weeks, we have looked at the current screening guidelines, learned how to understand basic results, and even found out what to ask our doctor if we have an abnormal test result.
Cervical cancer is tricky, many of the symptoms can be mentally explained away. Many of the symptoms can be caused by other, far less serious, issues. You need to know your body and be your own healthcare advocate. Now it is time to learn what symptoms and signs to be on the lookout for:
Taking a look at this list of symptoms, I think it is important to note, it is really important for you to know and understand what is normal for you. Many of these symptoms can be caused by other far less serious concerns, however you won't know without seeing your doctor. Many of these symptoms can be mentally explained away, however, they can be life threatening if ignored. If you have changes happening in your body, they are happening for a reason. You can, and should, be your own health advocate.
I believe each woman needs to listen to her body and always be strong. Don’t miss your OB-GYN wellness check-ups! If you are having symptoms, it might be scary. However, the outcome will be much scarier if you don't address your concerns! If something seems abnormal to you, it probably is. If you doctor won't listen, seek a second opinion. It is your life; be strong, persistent, and don’t give up.
Earlier this month we discussed the current screening guidelines as well as how to understand your test results, there was a lot of medical information involved and I am sure it left some of you with questions. If you are a woman who falls into the recommended age for only a Pap test, one question in particular you might have is "What do I ask my doctor if I have an abnormal Pap?" I think advocating for yourself medically is very important, and you should be prepared with questions for your medical provider. I spoke to some fellow cervical cancer survivors and patients to hear what they wished they'd asked or been told when they first had an abnormal Pap test. Lets take a look at some questions which might be useful for you when meeting with your doctor after receiving an abnormal Pap result:
I completely understand the statistics. According to the CDC, it is estimated that each year in the United States over three million women get unclear or abnormal Pap tests, only about ten thousand of those women will actually have cervical cancer.
I feel passionately that there should be a balance of education. Your doctor doesn't want to scare you and say these abnormalities can turn into cancer, however, they should educate patients on the specific symptoms to watch for when they have already tested for an abnormality which is known to lead to cancer.
Another important thing to note, although the HPV test is recommended to begin at age 30, you can ask for it earlier. It is advised that if you have an unclear or abnormal Pap, at any age, you request the HPV test as a follow up. Not all doctors will automatically do this test. I would advise that you ask your doctor if you have had this screen before, especially if you have had an unclear or abnormal Pap or if you are 30 or older.
Ladies, be ready to advocate for your own health. With these questions, if you have an unclear or abnormal Pap results, you will be ready to educate yourself.
I just want to take a moment to say how thrilled I am to have my husband, JR, in my life. He continues to be so supportive during this battle, which has turned into living life with cancer. We never planned for our lives to turn out this way, but we are doing the best with what we have been handed. You may look at me and think "she doesn't seem sick" but you cannot imagine the mental toll that living life with cancer takes. JR is ever supportive and he is the love of my life! Cervivor put out this fabulous graphic in honor of #CCAM!
Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer.