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.

Friends Across the Sea

Cancer survivors often turn to the internet for community and support when they are diagnosed with cancer. No matter how much of a support system one has, there is absolutely nothing in the world like connecting with someone who truly understands and has been there. At Cervivor, our online community is a huge part of our movement, both in advocacy and support. It was no surprise to us when we found out that two cervivors who had connected online during treatment were going to be meeting one another for the first time at our Cervivor School in Cape Cod, this past fall. However, with Laura being based out of Ireland and Lucy located in Missouri, it felt bigger than usual. These two besties were about to meet for the first time and we had front row seats!

Later we had an opportunity to meet with Lucy and ask her some questions about her friendship with Laura and what it was like to finally meet her:

How did you and Laura meet?

Laura and I first met through an online forum for Cervical Cancer (Jo’s Trust). She reached out to me after reading one of my posts.

What made you continue connecting online?

We were nearly the same age which seemed rare considering cervical cancer isn’t thought to happen in young women in their 20’s. That was an instant connection and feeling like I wasn’t alone in my battle. Laura could tell that I was having a hard time with my diagnosis and that I was feeling down. She sent me a friend request on Facebook and we stayed connected that way.

What support and/or inspiration have you received through the connection?

Laura was a great deal of support for me. She was about a month ahead of me in treatment, so anytime I had questions regarding my treatment plan, I knew she could answer because she had just gone through it.

Is it weird to have such a bond and share personal info with someone you have never (and may never) meet?

Not weird at all. It was so comforting knowing that I had Laura to talk to, even if she was in another country. It’s amazing how much you’re willing to share with someone you feel connected to. I have probably shared more stuff with Laura than my own husband!

What was it like to finally meet each other?

Oh gosh I cried! Laura and I had been talking for a year and a half before we finally met. In the beginning, we always said that someday we would meet. Life gets busy and deep down I was afraid I would never get to meet her in person. I am so thankful for Cervivor for allowing us the opportunity to meet!

Has it changed the relationship (good or bad)?

I truly believe Laura and I have the same soul. She is everything I could have ever imagined and so much more. I am blessed to have met her and to have a friend in her. We still talk all the time and encourage each other through our advocacy for cervical cancer.

What’s next?

I’m positive I will see Laura again. A friendship like this doesn’t just go away or move on. Maybe next time will be in Ireland, we’ll see!

Team Cervivor was delighted to play a part in bringing these two advocates together for the first time. We are sending them both lots of Cervivor love across the miles.

-Team Cervivor