Survivorship

18.

18 years cancer free. I type those words and I feel so many emotions. I do not take lightly the magnitude of surviving 6,574 days beyond cancer.

Wow.

My eyes well with tears as I now say that aloud. I am grateful. I’m blessed. I’m lucky. I am honored. I am happy. I’m sad. Sad? I’m Angry. Angry? Yes, because there is a part of my heart that also aches for those that don’t get the opportunity to reach a milestone, such as this. It’s what’s commonly known as, “survivor guilt.” The guilt of “having made it.” But with cancer you’re always looking over your shoulder and are always just a cancer cell or more away from “what ifs.” I remember the enormous cloud of anxiety (and fear) that came with reaching one-year cancer free, and then five. Last year I had a scare. I didn’t know if I would still be cancer free for year number 18 but I am, and I am grateful. I’m also honored as I know that every single day, month and year matters. It’s an honor and a privilege to be 18 years cancer free.

I learned some time ago that I had to honor this time — not just this year, but every single day.  And I do that in various ways. First and foremost, I do that by the way that I live my life. I live my life as if tomorrow is not promised. I live my life by enjoying my imperfectly perfect life. I live my life by giving thanks for what I do have and try hard to not worry about what I do not. I wrote an entire book about it. If cancer taught me anything it is to be grateful for life and I seriously find joy in living my best life beyond cancer. Cancer does not hold me hostage anymore. 

I give back to the cancer community in many ways, but the biggest way is the nonprofit that I founded and lead, Cervivor. That work continues to inspire, empower and remind me that I am alive. It can be bittersweet, because while I honor this life beyond cancer, working in this space triggers past traumas of an emotionally and physically difficult time in my life. I’m also surrounded by women who are sick and who sometimes don’t survive this disease. That is probably the most painful part of this work. But, it has also become that catalyst of why I can’t abandon this work. Women still die of cervical cancer despite all the advancements that have been made. While we can prevent cancer in future generations we need more help for women who endure recurrent and metastatic cervical cancer today. I believe that we will make that happen. 

When I first became a patient advocate, I didn’t know that it would look like it currently does today. I didn’t set out to become a patient advocate. It was exactly the opposite. I wanted to forget cancer and pick up right where cancer had come in and halted my life. But the harder that I tried to do just that; the more difficult it was to bury it while trying to navigate my “new normal”. I just couldn’t do it. I couldn’t reconcile how this thing had happened to me. How would I move forward with life. How do you live with the constant cloud of cancer hanging over you? I did decide to do something with “it” and “it” was to start sharing my story. I remember feeling that my story wasn’t as dire as some, and that compared to others it seemed that I had it “easier.” Why would anyone want to hear my story?  AND who would want to hear about cervical cancer and me talking about my “coochie” 🙂  But there was this feeling deep from within that I just had to do it. I had no idea what I was doing, but I learned just by doing something day by day and looking to others who could mentor me. Being a patient advocate isn’t a cookie cutter thing. There isn’t a one way fits all type of advocacy. Being a patient advocate is about being committed to a cause. It’s being vocal. My cause is to end cervical cancer. And with each year of survivorship that has become  even more personal than I could have ever imagined. I never thought that I would see myself here. But I am and I promise to make my survivorship count. 

My goal has always been to connect and mobilize as many cervical cancer patients and survivors; as possible. Over the last decade it has also been to get those women (and their networks) engaged in active advocacy. The past 18 years, I’ve met some incredibly dedicated women and more recently we’ve lost a few that not only hurts personally, but also comes at a great loss to the cervical cancer movement. 

That is what makes this cancerversary bittersweet. I want to yell from the rooftops that I AM 18 YEARS CANCER FREE (and I will), but I’m also sad to not be able to do the same with women like Jillian Scalfani, Lisa Moore, Brittaini Qadri, Lizzi Haas, Erica Frazier Stum and Laura Brennan. These losses hurt not only because of the loss of life, but because of the loss of champions for our cause. These women were giants. I miss them terribly. These women got it — in a big way. They were loud, vocal, passionate hadvocates. They understood the enormity of what we’re up against and the power of our collective voices to overcome it. I miss their willingness to be “all in.” I’ll continue to share their stories. Their voices will be heard.

This day will be about celebrating and a reminder that I am still here, but it is also a reminder at who is not. It’s bittersweet. But I’m focusing on the words of my friend, Dr. Sabrina Mikan, “Life is incredible! I appreciate each day I receive.” 

Amen.  

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

The Cost of Cancer

It’s an unreal feeling being diagnosed with cancer. Like an out of body experience, I was afraid to hear “its cancer” but at the same time I needed to know what was going on, so I could make the next move. It’s not at all like in the movies. In the movies you’re sitting in a doctor’s office with your spouse or loved one. The two of you are parallel to each other in front of a specially made wooden desk, fancy carpets adorn the floor, white walls covered with plaques from the various degrees your specialty physician has acquired over the years. The doctor enters the room and is wearing a white coat and stethoscope around his or her neck. They sit down and deliver the news. “I’m afraid, you have cancer” and then you cry. Contingent on your stage of cancer, dictates how optimistic you will be.

The part no one shares or talks about is how much it cost to get the treatment to save your life.  It does not matter the type of insurance you have or don’t have, nothing can prepare you for the cost of cancer.

Contrary to any movie I’ve watched, I did not immediately start cancer treatment. At the time I received SSDI and before I could have any type of surgery Medicare must approve everything. My doctor gave me two options. I could have a radical hysterectomy, or I could start chemo and radiation immediately. I’m incredibly vain and decided that I didn’t want to lose my hair and opted for the radical hysterectomy. I have four biological children and have lived with multiple sclerosis since 2005, trust me I wasn’t trying to have more children. When I awoke from surgery, I was told the cancer could not be removed and I started treatment a week later.

Once the cancer train starts moving, there is no way to slow it down. My life becomes an instant blur of poking, surgeries, wound care, medication, disappointments, guilt, frustration and lots and lots of money. It’s not until I’m midway through treatment that I started getting the letters showing the balance I owed for trying to stay alive. $13,000 every time I was radiated for 11 minutes over 6-week period, 5 days a week. I had chemo once a week for 6 weeks for $2,000 – $3,000 each time. I also experienced brachytherapy, 6 times in total, each treatment lasting 4 – 6 hours at $8,000 each time. There was also the surgery to have a port put in – this was to help make chemo easier and this convenience was around $1,500, not including the surgery itself.

Once I completed all the necessary treatments to live, I was then bombarded with letter after confusing letter having the popular phrase “portion you owe” written at the bottom. This is the part when I found out the cost of the gauze which covered the glue used to close the holes created by the Da Vince robot.  I was privy to how many people were in the room when I had surgery. I then find out the hospital, surgeon, anesthesiologist, the person who drew my blood all billed my insurance separately. No one talks about that, no one shares the confusion that was my life for at least a year after finalizing treatment. The phone calls that came from all the bill collectors as I tried to explain I had cancer and during that time I was much too busy to burden myself with mundane tasks such as paying for my  electricity, car payment or to think about the credit card debt I now faced because I was way to busy vomiting and trying to keep at least water down (said with sarcasm).

Lastly no one talks about trying to find you again – the money that goes into your second chance at life. I want to make sure everyone knows that until we find a cure for cancer, we’ve got to live with cancer. Living with cancer can be expensive, there many hidden costs and some not so hidden. But I have faith that some day choosing to fight to live won’t cost your sanity and your entire savings. After being diagnosed with a life-threatening illness like cancer, you might not be thinking about your financial situation after you recover. One of the ways to get yourself back on your feet after experiencing something like this illness, you could consider finding the best credit card to build credit. This would allow you to eventually achieve a loan to help you get your life back on track. This illness can be expensive, so sometimes a loan is one of the best ways to help you financially. Although, there will be other ways of doing this too.

Tamara Clough is a cervical cancer survivor living with multiple sclerosis. She is a mother of 6, biologically 4 and a wife of over 12 years. After an over 10 year absence from the work force, she is now a community health worker for a local non-profit community health center and volunteers with the American Cancer Society, is an HPV Vaccination Ambassador, and an ACS CAN Ambassador for region 6 tasked with helping raise the smoking age of cigarettes to 21 in Washington state.