The True Costs of Cancer

I am three days post-chemo, confined in my house because those neutrophils are heading downward again. I don’t want to field another infection. I just fought off an eye problem. These things happen, they tell me.

Today is World Information Architecture Day, a wonderful event that brings together great Information Architecture luminaries around the world, and most events are free. A few years ago, I was honored to appear in the Ann Arbor event to share my experience. This year, cancer has me listening in on UStream. I am frustrated that I’m not out there, with my peers, working hard to learn with others and share what I know. This is a joyful part of my life; one in which I may not actively participate right now.

This is one of the costs of cancer. Let’s take a look today at the true cost of cancer, from a personal perspective.

I. Monetary Cost

I know that there is a societal cost to cancer.

• There is the overall cost of care. The Cancer Society says it was $88.7 BILLION back in 2011, and it can only have increased from there.
• My employer is fielding the costs of me being disabled right now. Believe me, I am aware that makes me a liability to them. I want to be an asset for them. (Fortunately, I think I have made some contributions that might make it worthwhile, but you’re only as good as your last show…I need to get back in the saddle.)

But there is a cost to my family, and the price has been dear. In the US, middle class families with good healthcare coverage have seen their costs rise precipitously in the past decade. As generous as my employer is, I have to pay:

• Premiums every paycheck that total several thousand each year
• Deductibles and co-pays up to $1.5K each year
• Out-of-Pocket costs that amount to $5 to $7k per year
• Costs that are not covered – several thousand more

People who are healthy don’t incur many of these costs, but if you get sick, you’re screwed. Three years ago, when I had just started my new job, I was diagnosed with my thyroid cancer.  At the same time, my husband developed an internal problem, nearly died and had to be rushed to surgery. Since that time, he, our daughter and I have incurred nearly $40,000 in costs that we have had to pay out of our funds. (My insurance has incurred hundreds of thousands.) Is it a surprise to you to hear that we hold debt to nearly that amount? We’ve sold a house and downsized, done what we can to reduce our costs…and we are still losing ground.

This is the monetary cost of cancer, for many Americans: a long, slow slide, often into poverty.

II. Personal Cost

The cost here is beyond measure.

Cancer Kills Dreams

I have a few dreams:

1. To see the world. Ever since I was little, I’ve wanted to know what lay around the corner, what will lie ahead, how do other folks live? I love nature and beauty and I want to take it all in. I’ve traveled extensively in the lower 48 in my time; I can’t wait to see all of the continents, preferably with Brian at my side. Few things make me happier than traveling.
2. To be the best I can be at User Experience research; to share what I know and to improve the practice wherever I can. Included in that idea: maybe writing a book, teaching, presenting and helping host UX events. I really love my field; I want to make a meaningful contribution to the practice and to my work place.
3. To summit Long’s Peak. I got close when I was young, and chickened out at a crucial point. Brian summited a few years later and left me a message in the guest book at the peak. I want to see it.

I’ve had to adjust every one of these goals to account for my cancer. I am too indebted to travel now; I can't participate and contribute as I'd like; I may never be physically capable of making such an ambitious journey up Long’s.

Cancer Robs Professional Success 

For many of us, cancer signals the end our future at work. There. I said it.

It’s the dirty secret that even the Americans with Disabilities Act couldn't fix. That is one reason why I didn't tell anyone about my cancers for so long, and a big motivator in moving my career from point A to B after each round. 

In past rounds, I’ve watched people sabotage my work, use my accomplishments to further their career, use my illness to plant the seed that I am not capable or that I am somehow dangerous. Human beings are programmed biologically to fear disease. Overcoming cancer at work is made exponentially difficult because we are fighting a psychological battle in others as well as our own.

I fought back. My professional colleagues do hold my work in high regard. A work colleague once told me going to conference with me is like going to a high school prom because I spend my time princess-waving to my many friends. I have more than one design accomplishment I can point to with some pride. I know my stuff and I can hold my head up when compared to anyone in my field. I graduated with my technology degree magne cum laude just a few years after my first chemo. I still see the fruit of my work in the efforts I have made in civic design; even though no one but me remembers . (That’s ok; I didn’t make that language happen because I wanted to be a star; I wanted things to be right.)

Just before I realized I had to grapple my cancer elephant yet again, I was making my case at work for the promotion that I deserve, and that makes sense for my team and business. I was already dealing with the normal issues: team members who didn't take the time to get to know my bona fides. I had to reprove myself despite being recruited for this team. When I return to work this time, what will happen? Will I get that promotion? Or will this be starting over?

To be clear: I have a great job! I am grateful for the way I’ve been treated by my company and my team so far; they have been wonderful. In the future, I worry that circumstances could change; I fear my choices may boil down to being pigeon-holed, or moving on. This was my past experience. I do love my team, and I want to share my knowledge and grow my practice for them. I am just not sure if I can stand the idea of being put in a corner. Having a future to grow into; being a vital member of a team, those remain a big part of my motivation. Past isn’t necessarily prologue here; but if I can’t return as vital as I was, or if I have to reprove myself -- I have to rethink.

Cancer Pares Down Physical Appearance and Ability

We cancer travelers lose body parts as we go, we lose skin tone, nails and hair, sometimes for good. Remaining parts are numb and disfigured; our joints ache more than they should; we have swelling and post-surgical issues that are not for the faint of heart. We never again see the relatively whole person who began the cancer journey.

Honestly, this is the least of the costs, in my mind. They have been the easiest for me to manage. Yet, these can’t be discounted as unimportant: in an active career, looks and ability matter. When you have to make a big presentation or conduct an event, it doesn’t matter that you didn’t sleep the night before or you can’t straighten your foot today or you have a chemo brain fog. I’ve been overcoming for decades now, and the uphill journey just got steeper -- all of which may justify those vultures circling. What if the doctor wants me on maintenance meds that won’t allow me to function as I had? What if I have lost it for good?

Almost!

SO CLOSE!!! The regret I feel is indescribable. I have told my friends that I feel like I was on the carousel; ready to grab the brass ring. Instead, cancer pushed me off the pony altogether. Desire may be the enemy of contentment, and this may all be in God's hands, but who wouldn't be frustrated at effin Cancer! What a nasty, horrible thief!

And I’m lucky: I still have some idea that maybe I will be able to fulfill some subset of these dreams, if I am tenacious. I follow many folks with more advanced disease: a readjustment of priorities happens pretty fast when you get that diagnosis. I certainly can’t assume it won’t be me someday.

I clearly understand that I will never return to a state of non-cancer. I may have no evidence of disease at some point soon, but my cancer elephant will never just sit on the shelf again.

And my dreams and goals don’t matter one bit to him.

How are the costs of cancer affecting you? Please share here, or on Twitter, Facebook or Inspire.com.