Year Twenty

March 17th, 2019… St. Patrick’s Day for most, a totally different day for me. This year, more significant than ever before, because on this day I hit a significant milestone. Today marks 20 years since the day I heard the words that changed my life forever: “You have cancer.”

I know I write about it every year, but writing this, today, on year #20, is surreal. 20 years is a lot of time for any cancer survivor.

I was 27 years old when my world came crashing down. I had been struggling with some vague symptoms and suddenly the profuse bleeding began. Imagine yourself in my shoes. Imagine yourself rushing to the ER for the second time in a week because you are bleeding so much that blood is literally seeping through your pants. Imagine being seen by a doctor that within minutes of checking you decides to transfer you to another hospital because he realizes that what you have is serious and much more than he and that particular ER can handle. Imagine yourself being rushed to another hospital in an ambulance, knowing you are on the way to THE HOSPITAL, the one where all serious cases are routed. You now know for sure that something is terribly wrong. The attending sees you and knows exactly what he is looking at, he performs a biopsy, packs you to stop the bleeding (all the while you are screaming in pain) and admitted to the hospital. Imagine yourself, a generally healthy person, in a hospital bed after losing so much blood that you now need a blood transfusion. You are scared to death. You see the look in your family and friends’ eyes and know they are terrified for you. You are just 27 years old and have your whole life ahead of you but based on what’s going on, you don’t know how much life that will be. Imagine yourself returning home after a couple of days, albeit not able to work yet, you are too weak for that. Imagine yourself a week later, showing up to the outpatient clinic early in the morning for your follow up visit. Almost everyone around you is seen and you are still there, waiting. You hear someone say “they leave the bad news for last.” Suddenly you realize that you are the last patient.

You enter the exam room and are met by the attending and a couple students. The attending holds your hand and tells you: “I am so sorry, you have cancer.” You ask for a minute, you don’t want to hear this news while you are in stirrups. You sit up and hear the words again, you are fighting tears. He asks you if you have children and you answer “no.” He follows up with “I’m sorry, you will not be able to have children of your own.” You can’t hold your tears anymore, this is pretty much the end of your life. You are overwhelmed and scared and ask the only question that seems to make sense: “how much time do I have,” the doctor doesn’t know… you don’t know if that is good or bad. Amidst all this you are given tons of information, referrals and instructions; nothing makes sense, all you can think of is cancer. This is definitely the worst day ever.

Imagine telling your mother that you have cancer; you watch her breakdown in front of you and you are unable to comfort her because you are just as terrified. Imagine calling your close relatives and your best friend to tell them the news; you hear them cry even though they are doing their best to keep it together for you… they too think this cancer will kill you but they want to be supportive for your sake.

Imagine living the next year of your life attending 3-4 appts. per week, not being able to work. Imagine experiencing a pulmonary embolism that lands you in the hospital for a whole month and nearly kills you, cancer is suddenly not the only thing you have to fight, there is so much more that comes with it. Imagine throwing up for a week straight after your monthly chemo treatment, or being isolated in a room for 3 days while receiving internal radiation, or being unable to leave the house because side effects from the external radiotherapy has you going to the bathroom too many times to count. Imagine not being able to eat your favorite foods because chemo has changed your taste buds. Imagine your “social life” is now one medical appt. after the other. Imagine living a whole year of your life feeling weak, being hospitalized again due to side effects of your treatment, suffering through painful and debilitating treatments with no guarantees that they will work. Imagine going to your oncologist appts. and noticing that the people that are usually there the same days you are, are looking worse and worse each time you see them until all of the sudden one by one you don’t see them anymore. You know exactly what happened and wonder if you are next.

Imagine waiting for results once the treatment is completed… you are not told you are “cured”, you are told that you are good for now but will have to continue coming in for regular testing. You now see a gynecologist-oncologist and a hematologist-oncologist, a radiation specialist, an internal medicine specialist, a pulmonologist, and a gastroenterologist every single month for the foreseeable future. This is your life now and you don’t know if you will survive the next year, or the next, or the next. Nothing is guaranteed.

So here we are on March 17th, 2019: 20 years later. For cancer patients, the 5-year survival milestone is significant; we know a lot of people don’t make it…that 5 year mark is cause for celebration and some relief. I’ve been blessed to see the 5 year mark, the 10-year mark and now this incredibly important milestone: 20 years. By the grace of God, I survived a cancer that kills more than 4,000 women in the US every single year. This is huge!

As I learned more about the causes of cervical cancer, I became an avid advocate; talking about it is important, it may save someone’s life. Connecting with Cervivor solidified my commitment to advocate and educate others and it also connected me with hundreds of other women facing the same, often misunderstood, cancer. The vast majority of cervical cancer cases are caused by a persistent human papillomavirus infection (HPV). HPV is transmitted through skin to skin sexual contact (no penetration needed) and it is so common that 8 out of 10 people are infected even though they may not be any symptoms. Cervical cancer can be prevented or detected early through regular Pap and HPV tests; but most importantly, HPV infections can be prevented with a simple vaccine. The HPV vaccine, when administered prior to exposure (recommended for ages 11-12), can prevent infections with the high risk strands of HPV which are linked to cervical cancer and other cancers as well (vaginal, vulvar, anal, penile, oropharyngeal). Yes, the HPV vaccine can help the next generation prevent HPV infections and related cancers. It can’t be any easier: vaccinate and protect against cancer.

Maria sharing her story in Colombia, spring 2018.

After 20 years I have learned to live with the long-lasting side effects of my treatments, my body is not perfect but is in better condition than expected; I am back to annual checkups and that’s a great place to be. I’ve had the opportunity to start over. I am as healthy as I can be, married to an incredible man, a stepmom to 2 pretty awesome kids, have the sweetest dog and have experienced so much love and joy in my life… 20 years sure calls for a celebration. I am blessed.

In writing this, I hope my story motivates you to schedule your Pap & HPV tests and to vaccinate your children to protect them against HPV and if you are a cervical cancer patient, I hope my story gives you hope for life after cancer. This is how we celebrate year #20.

Watch Maria share her story on CervivorTV here.

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.

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.