Answers to Questions: Cancer Walk 2013

I was suprised in April when I was invited to have my photo on a banner for the Lurie Center Cancer Walk this year. Part of my participation includes the possibility of my 'story' being on their website. I was asked to answer some questions about my cancer experiences and in today's post, I'd like to share those questions and my answers.

 ·         Would you tell me a little about your story? When you were diagnosed?

 I have always lived a fairly healthy life – I ran, ate well, never smoked, only occasional drinking. In the summer of 2010, I had stopped running after a hernia surgery but was walking about 5 miles a day. At that point, I started to experience some groin pain. I thought that I had pulled something so I took it easy and babied it, but it didn’t go away. Once released from the doctor post-surgery, I tried to run and it was impossible – it was way too painful, so I went to a sports doctor. She took an xray and saw something that looked suspicious. She thought I had a compression fracture so I had an MRI which, on October 4, 2010, revealed multiple bone metastases - the main one in my right femoral neck that had been causing the pain took up about ¾ of that bone. She put me on crutches right away and I was admitted to the hospital the next day for multiple tests and scans to find out what it was. They thought it was lung cancer but couldn’t get enough tissue to confirm. I was scheduled and had surgery to repair my femoral neck at which point they used that tumor for the biopsy which confirmed that I had Stage IV adenocarcinoma. Total bummer. I had multiple metastases to the pelvis and spine, brain, and one in the liver. I underwent radiation for the hip and gamma knife for the brain. We began to talk about other treatment, so in January 2011, I had a VATS surgery to get more tumor tissue to test for genetic mutations which came back negative. My only option was chemo.

To cope, I read a lot. I was a sociology grad student at the time and so this was my inclination. I read about cancer (Emperor of Maladies – awesome!), I read about death , I read over 25 first-hand stories of people who had died from cancer. All this (I think) to ‘face the monster’ so to speak - make friends with death so that it wasn’t so terrifying. And frankly, all of that reading helped. It made me realize that I am not special. How can I feel sorry for myself when lots of people get cancer and lots of people die from cancer, many much younger than I am. Shit (excuse me) happens and this time, it happened on me (which congers up a fairly amusing picture).

 ·         The impact on your family and/or work?

I missed work for the hip and lung surgeries. During the initial six rounds of chemo, I missed work every three weeks on the Friday of chemo and the following Monday.  Once on maintenance chemo, I would miss only Friday. Now I only miss Friday afternoon. I have tolerated the chemo well and, although I get tired, and have some intestinal ‘issues’, work is pretty much unaffected by my treatment. In fact, I started a new job in January (same place, different department).

My family has rallied well. I wanted to talk about death a lot – I think to sort of make friends with it so it wasn’t so scary, and that freaked them out for a while. My daughters and sister have been around for my initial treatments and surgeries. Other than that, I haven’t really required much care, which is good because no matter how much you love your family and they love you, you really don’t look forward to the day when someone has to wipe your butt for you.

   ·         What advice do you have for someone newly diagnosed with cancer?

Much of cancer is a head game. You get this horrible diagnosis and you start to feel sick even though days before your diagnosis you may have been feeling fine. It’s like this every time you have an ache or a pain. You convince yourself it’s the cancer and you start feeling sick. Not to be trite, but you do have to live at this very moment. I feel fine NOW. I am living NOW.

It’s also good to decide what is important to you and what helps you cope and do those things. I’m active in my church. I volunteer. I knit.  I write a cancer blog. I read interesting books. I hike. I fly fish. Most importantly, I try to have a sense of humor.  I am also thankful  at 2 ½ year post diagnosis when most of my cancer cohort are dead, that I am well enough to do and enjoy all of those things.

   ·         Do you have advice for caregivers you’d like to share?

This is a tough one. Don’t let yourself become consumed by the person you’re caring for. You need to get out, do your own thing, and recharge so that you don’t go completely mad and become resentful, and also so you have something to bring back to them.

  ·         Was there someone special on your health care team whose care or support was especially important to you? (Not necessarily looking for a name, but more the role the person played in your care)

My sister. We had been estranged before the cancer and now we are thick as thieves. She’s just there – providing post-vomiting comfort, telling me to hang on when I didn’t think I could take one more treatment, and listening to my death-themed rants - she gets it. I don’t have to explain anything.

   ·         Why did you come to Northwestern?

Well, I wish I had the typical marketing answer like, “Because I knew by reputation that I would receive spectacular care by their warm, friendly, first-rate oncologists!” but honestly, it was convenient in location to the CTA… oh, and I could have all of my doctors in one place.

I will say this though; I have recommended NW to others. I definitely think that if you have cancer, the way to go is a university-affiliated center. Plus, I just love Rebekah, Dr. Johnson & Dr. Peabody. They are first-rate.

·         Did you take part in a clinical trial?

I did not. I tried to sign up for one, but some of my liver markers (whatever they are) were too high and I wasn’t allowed in. I stopped talking to my liver for a while after that, but we’ve since reconciled and get along fine.

·         Anything you’d else you’d like to add?

I have a problem when I hear people put a perky, positive spin on cancer. Granted, you can learn a lot of things by having cancer, but nothing that you couldn’t have learned through other means. Given the option, I’d rather learn them without the diagnosis, thank you very much.

Having cancer is not a blessing. It is not a gift. It is fear and pain and suffering, sadness, despair and longing. You can’t make it pretty by putting a wig on it or tying it up in a pink bow.

Don’t let anyone tell you otherwise.