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.

Choosing Mindfulness in the New Year

For as long as I can remember, I have had some level of deep sadness with the ending of Christmas and the bringing in of the New Year. For my family, the “holidays” begin at Halloween and basically go to January 1, with the climax being Christmas, followed by New Year’s Day. On January 1, you begin to realize that it’s actually over and there is no other major holiday for months, at least the kind where you get out of school. As an adult, these feelings were only perpetuated by the fact that I became an elementary teacher, where my calendar was constantly driven by cultural holidays and breaks.

Even as a girl, I remember having a sense of sadness hearing my parents talk about loved ones who had passed and how things were so different than when they were kids.  As Christmas Eve turned to New Year’s Eve in a matter of days, it felt empty. The build up seemed so long, for what was only a couple of days of magic. I have memories of Auld Lang Syne making my chest well up, even as child. It all just seemed so fleeting. With the dropping of the Times Square ball each year came feelings of dread. Back to school. Back to work. Back to normal life.

However, this has all changed in my survivorship. Since cancer, I choose to live all my days differently. I live in a different state of mind. Cancer brings you face to face with mortality, death, and time. For many of us it’s the first time in our lives that we have truly sat with those things-not just knowing it as fact but really taking it in and allowing it to shape our lives. Something that a lot of people never do and if they do, they are much older. Once I began to digest my mortality, it changed my mindset toward every single thing. I no longer look at holidays or the holiday season with the same weight and importance. I still love them, and Christmas is STILL my favorite. BUT I live with much more intention and purpose now. Every day is Christmas because for me it’s a state of mind that I choose. The New Year now brings hope and excitement. I no longer get sad when the ball drops. Instead, I get excited about the next 365 days of new opportunity and growth. BUT this isn’t something that just happens. And for me, it takes a bit of work.

My therapist and I are working on mindfulness and this is why; He explained that for those of us who have experienced a traumatic life event like cancer, we can experience depression about the past and anxiety when we think about the future. Anyone else feel this way? When I think about my life before cancer, I loved it. Sure, I had experienced my share of heartache like anyone else and life wasn’t perfect, but it was good. I was healthy, I liked what I saw in the mirror, I wasn’t in and out of hospitals, I had extra money, I felt great, I loved my job-life was good. I can look back on it and quickly get depressed that my life looks so drastically different now and all out of my control. On the flip side of that, when I look to the future, I can get extremely anxious. Will my one kidney that I have left continue to work? How long will I have to go in and out for stent changes? Will I end up on dialysis? If I have a recurrence, what will be my treatment options since I have mid-stage CKD now? Will I ever be a mom? Will I have enough money for retirement? And so on and so forth.

It’s perfectly normal after cancer to have these feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them. My therapist is working with me on being present. Being in the moment. And it makes sense because it’s all we are guaranteed.  Mindfulness helps me to acknowledge those feelings of lament and anxiety but then choose to be fully present in the here and now. This allows me to breathe, to be free, and most of all to be content. Mindfulness allows me to look at 2019 and set goals but fully put my energy and thoughts into today. It gives me control in the chaos and helps me thrive in present.

Wherever you find yourself today-whether you’re experiencing sadness and grief of the past or you’re looking at the next twelve months feeling anxious of the unknown, or some mixture of both-I challenge you to see your survivorship through the lens of mindfulness and lean into the present.

Holly Lawson is a cervical cancer survivor and Community Engagement Liaison for Cervivor. She resides in the Dallas-Fort Worth area with her partner Claude and their furbaby Luna. Read her story here.