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.

The Journey Now Part 5: Back in the Saddle

Today, I'm back in the saddle.  Finally!

My numbers were up, across the board. Everything from my white blood count to my neutrophils. My calcium was high, my red blood count remains a bit low.  I saw my oncologist yesterday, and we talked about my experience last time.  She can't change the Cytoxan dose, and there is just one more, but she lowered the Abraxane. Almost everyone agrees but me that it was the Abraxane, not the Cytoxan, that caused the crash and the misery.

Today, my nurse scolded me: "If you had such a rough time, you should have called! Maybe you needed hydration, and we can call for pain meds.  Don't wait next time! Or go right to the ER," she said.

Hubby reminded me: I did call, and pretty much got a yawn. This might have been in part because it was Superbowl weekend.  But OK; point taken. Don't suffer, bitch. I will, next time.

The Abraxane-only infusion was uneventful. We made some more progress on The Hobbit; we are almost through. And there's this comforting thought: JUST FOUR MORE!

Please let me know how you're doing.

Judging Lesley Gore: A Quick Rant

Today, I was saddened to learn that the wonderful Lesley Gore passed. Each news article I read said only "died of cancer."  So I traveled to www.lesleygorefanclub.com where I read something that just infuriates me, even though I know why they absolutely had to publish this in just this way:

Lesley Gore, 1960s Pop Icon, Dead at 68 

NEW YORK, NY, February 16, 2015 -- Lesley Gore, who shot to fame in 1963 at age 16 with the classic pop song, “It’s My Party (And I’ll Cry if I Want To”) and made the pre-women’s movement song “You Don’t Own Me,” a feminist anthem for many, passed away today at New York University Langone Medical Center in New York City. The cause was lung cancer. Gore, who was a non-smoker, was 68. 

As I explained to you in my "Things not to say or do" post, there is often a judgmental factor people have about cancer, especially certain types. So now, without that "non-smoker" clause, Lesley Gore might be remembered, not for her tremendous courage, her feminism or her talent, but her lung cancer. Her obituary will always be immediately followed by "she was a non-smoker."  

Rant over. Rest in peace, dear Lesley. Condolences to her partner of 23 years and family. Feel free to join me in the comments, on Twitter, Facebook or Inspire.com.

Two Weeks in Limbo

Status Update

"Neutrophils" by Dr Graham Beards - Own work.
Licensed under CC BY-SA 3.0 - Wikimedia Commons 

For the last two weeks, I've been in chemo limbo. Because of the terrible, horrible no good, very bad worst chemo I have ever experienced two weeks ago, my bloodwork came in far too low last week.  My white blood count was low, my neutrophils were bordering on dangerously low. Chemo would be dangerous under these circumstances.  

I was told we would wait a week. I was so very unhappy, because my whole life is on hold for this chemo, and this would delay my return further.  I tried to adjust my attitude and look at this like a vacation:  I could eat more normally again, and I felt generally better.  So much better, I was sure this week's numbers would be stellar.

They were far worse:

• My white blood count is lower.
• My red blood count is lower and the cells look anemic.
• My neutrophils (the infection-fighting white blood cells) suggest that my immune system is in full crash mode: from .8 last week to .2 this week.

My doctor has delayed me for another week. Her nurse told me that she lowered the dosage of my chemo.

"Did she lower the Abraxane or the Cytoxan?  I was doing well on the Abraxane, but I think got very, very sick from the Cytoxan."

"The Abraxane."

"Really? Because I handle the Abraxane just fine. But I'm not sure I have the courage to do another round of Cytoxan. I think it nearly killed me."

I will see the doctor face to face, next week.  Until then, I remain in limbo:

• I may not go out in public at all.
• I may not peel my own fruit, and only fruit with peels or fruit that has been cooked are allowed.
• I can't have raw vegetables, either.
• I can't pick up after my dog.
• I shouldn't clean my house, especially, ahem, certain areas.
• Lady Macbeth and I should have red, raw hands from all that washing.

I'm pretty sure I didn't sign up for all of this. I am in deep doubt that I am doing the right thing. I fear long term side effects, like the leukemia that some patients experience post-chemo.  My body may be signaling me.

But that one in four recurrence number...it's just so high. I need to screw my courage to the sticking place, for sure, next week.

How do you screw your courage to the sticking place? Let me know in the comments, on Twitter, Facebook or Inspire.com.

Things You Should Never Say or Do to a Cancer Survivor

Author's note: I've just updated this, in two ways: 

• I wanted to include calling thyroid cancer "the good cancer."  
• I took out not asking how I'm doing. I realized that's unreasonable; you want to know. Maybe not as often?

As I was crawling into bed for the night, Messenger buzzed. It was an old friend. This conversation, over the next few minutes, became my go-to example for what to never say to a cancer survivor. I’ve changed relevant facts because I don’t want to embarrass them; I want you to see how easy it is to be an ass. I put my Daria-inspired thoughts in italics.

• How are you feeling? Hope you have a good New Years and get better! Had first chemo correct? Notice anything?

Thanks. I am hanging in.
Yep day xx post
Been interesting
Lots of side effects. Side effects from stuff they give you for the side effects.
...Time for me to hit the sack; its midnight!

• Is this breast cancer?  Didn't you have before?
• I bet you feel bad.

Yes and yes. The chemo was easier before.

• Same area?

...Is this person drunk? Seriously?
Yes it is a recurrence but more aggressive.

• Why don't you remove your breast, won't that help?

...I see that you pay careful attention to what I post!!! How could anyone think it was ok to ask that? 

I did. Most chemo is designed to catch the cells that hang around to cause trouble again. Micro cancers. I am improving my odds of not getting another recurrence.

• That is bummer. Maybe chemo was easy first while you expected worse, this time opposite. That's good, but this tougher regimen will kick your but. (sic)

...Why am I bothering?  How do I just get rid of this person?

• It and being positive is all you can do. That really makes a huge difference. You know (SOME RANDOM PERSON) had it real bad and has been good. She has a great attitude.

...Oh, jeez, here we go. How do you know? You hold her head over the toilet?
Yep. Thank you for checking in. Means a lot.

• It's scary, you should be checked on.

...Yeah, I only have $100’s of thousands of dollars invested in that so far, I’ll be sure to get right to your suggestion.

• We had a family friend who died years ago had cancer. He fought hard, was in remission three times. What he had was very bad type. He lived about 8 years; three more than they thought. Never have I known anyone so positive. He wore that bald head proud too!

It leaves you with a smile to think about him, doesn't it? That's a special person.
...Because, what this person is really telling me is that they missed this dude. At the same time, dude, whoever and wherever you may be, good job holding your tongue!

• He was a very large man, fat, I think that actually helped treatments had him so sick he would have wasted away. We went to Lugnuts game. He is bald, people stare....He could  of cared less. He was a beautiful person.

....WTH? Did you just tell me that a fat man was able to survive longer because he was fat? Does every thought that crosses your mind find its way to your keyboard? What is wrong with you? 

Keep him in your heart when times get tough. He's still with you. Listen I need to get some zzzz's.

Me too.
Rest, stay strong

ty

....ARRRRRRGGGG!!!

Here is my list of things you should never say or do:

1. Tell me, "My (name close relative, friend, etc) had cancer..."
You can tell from my story why this is a horrible thing to do. When I first got cancer decades ago, I literally clung for hope on the stories of long-time survivors. I can’t tell you what that meant to me! I also can’t tell you how it hurt to lose a few folks I met along the way…the gals and guys who transitioned from battle to legend. So, the last thing I want is someone else's sad baggage. 

2. Ask me: "How did you get cancer?” "What did you do (wrong)?"

I’m always amazed that people don’t have the manners not to ask. I am asked so often, that I have a pretty standard answer, but here's the real answer:

WE NEVER, EVER KNOW why we got cancer. Oh, we can guess: Doctors like to say genetics, but that’s proving thin. The real answer? One or more cells (for whatever reason) forgot how to die, and then started a party in my body. End of story.

Like lung-cancer patients, I’ve been asked if I smoked. (Answer: yes, for a time, long ago. I also ran four miles a day in my 30s and 40s and ate fresh, home-grown foods.) It remains much less likely a contributor than, say, the high-estrogen birth control pills the doctors gave me for cramps, the radiation treatments that may have led to later cancers, and a host of other contributors, like the above-ground nuclear testing fallout we all played outside under as children of the 60s.

Think about your motivation for asking a cancer patient why: You want to avoid my fate! You hope that you can check off that box and say, "Well, I'm not going to die a horrible death."  Worse, there's a bit of judgement: "It was her character flaw that caused her cancer."  However far short I may fall of sainthood, I can tell you that lots of folks do much worse and they don't get cancer. 

I suggest that's trying to figure out why is a fool's errand. The fact is, we have more carcinogens in our daily lives than at any time in human history. So, stop victim-blaming and figure out how you can make the world healthier.  

3. Call any cancer, especially thyroid cancer, "the good cancer."
I have had nearly every one of my endocrinologists use this. I fired one of them, but I realized that the practice is just too rife. Still, it is blindingly inappropriate. The challenges of thyroid cancer, any cancer, are beyond understanding until you have been there. Even the article that I link to understates some of the issues: we remain symptomatic and often unwell throughout our lives, especially when on standard care. The medical community dismisses these issues, reflecting a level of malpractice, in my opinion. Those who have battled other cancers know that their doctors are working hard to improve care for them. Not so with thyroid cancer, it seems. Doctors seem content to perform thryoidectomies, then prescribe a less-than-effective pill, and dismiss your concerns after.  That's pretty outrageous. It's not the good cancer *at all.*

4. Ask (repeatedly) "Can I do anything/clean/shop?"
Look, I can’t stand the idea that I’m impaired in any way. I don’t want to be in a position to need help, so accepting it means I have to acknowledge that I can’t manage. Just don’t ask. Do something that has your heart in it, if you want, or ask Brian what I need, but for heaven’s sake stop asking me. 

5. Say, "You are strong; you will get through this."
Trust me, I’m not. I’m regularly reduced to impotent, flowing tears of despair when I'm sick. And hell, I may actually die. You don’t know! I have endurance, not strength. But thanks for the thought.

6. Exhort me to "Stay positive."
This is truly unfair to a cancer survivor. Want to know how positivity works out? Read this blog.

7. Tell me, "I saw an article and you should..."

I have had some downright dangerous advice from my friends. Some of the things people close to me have suggested would lead straight to another cancer or worse.  

Many of you know me by now. You probably know that I’ve researched this to the molecular level, and taken it to the metaphysical. I make informed, clear-headed, tough choices. Unless you are being paid, by me, to give me medical advice, I probably find it unwelcome. (Hell, most of the time, I find the advice of the ones I AM paying to be unwelcome!)

8. Say, "God doesn't give you more than you can handle."
I had a Christian friend, years ago, who survived a horrible robbery/rape that left her back permanently damaged (from fighting back!) She was the one who clued me in: the Bible never said that. It makes those who feel at the end of their rope ashamed, not comforted. Fellow Christians, do you ever take a moment to think about how it makes people feel who don’t believe? That's a never, ever.

9. Say "I know how you feel."  
No, you don’t. I don’t how my fellow travelers feel. You can’t possibly know how I feel; it is the human condition. Generally speaking, we should never tell someone we know how they feel.

10. Post a cancer meme or fundraiser on my Facebook page. This goes quadruple for the chain letter types.

A short while ago more than one friend did this very thing: sent me a "You've been specially selected for a blessing" meme that exhorted me to immediately send it to 15 friends to obtain the blessing. At least it didn't threaten a curse if I didn't!  

Another is the "Some people just want to beat cancer meme."  It always ends with "I bet you won't repost." I believe I have seen it on my timeline over 50 times so far.  I won't.

Please don't ever send me these.

Please don't send me fundraisers. First, because I should be getting from these folks, not giving. Also, most of the fundraisers are scams. Even the legitimate ones are notoriously poor at using funds for actual research, while legitimate need goes unmet. If you aren't sure how the funds will be handled, please don't. Want a meaningful cause? Everyone needs to support metastatic cancer research.

I know you want to express solidarity. Let me suggest inspiration, funny posts, cat videos, screaming goats, anything but one more "Bet you won't repost this" cancer meme.

I know you love me, I know you want to help. Your good thoughts and your prayers go far in sustaining me. At the same time, I will appreciate it if you take a moment to think before you say or do. 

Here's another take on the what not to do from Yahoo!

Add your "what-not-to-dos" in the comments, on Twitter, Facebook or Inpsire.com.

Side Effects, Part 2: OMG!

I promised I'd be honest. You're not going to like it, though. I want you to be clear about it all. I'm not a hero; this isn't a 3-day walk in a park. God reminded me of my humanity this week. Turns out, I'm incredibly human. 

This was big chemo week: both the Cytoxan and the Abraxane. I had a reaction like I've never had before, however. The first intractable symptom was a growing fever, waking up Saturday morning, 1.5 days after chemo. I reached 99.9 but I didn't top the 100.4 that would send me automatically to the ER. 

I felt incredible, deep bone pain: I had to text hubby downstairs to come help me. As you remember, that symptom means my white blood counts are far too low. I got those somewhat resolved with Tylenol and Claritin, but the nose sores and the taste of metal/blood were ever-present -- much, much worse than ever. I couldn't make them go away. My GI felt like it no longer worked, like a subway that has stopped and is backing up dangerously. It felt like my system was turning into metal itself. 

My Chemo Crash!

After days of this, thoughts turned pretty dark, and any solution seemed, well, reasonable. It became easy for me to ideate that the solution was to just be done. It would solve so much: the pain would stop. My family would have the money that is currently being poured into my veins to hold the cancer away. (My life insurance is pretty good, you know.) If I die now, maybe that would spare me a horrible drama later. I know, that's not a good place to be.  So I just prayed to find relief. 

My husband was wonderful. He kept my hydrated, medicated and comforted the best he could. I obviously did hang in there of course; if this was going to be my death, that day wasn't going to be Superbowl Sunday, apparently. Gradually, that day, it resolved. I was even able to watch and enjoy the Superbowl. So, prayer answered. Yesterday, the sun shone, and I napped. It was over, more or less. Thank you, God? 

I don't know how my fellow travelers do this; how some of them handle much worse. I bless and marvel at them; I know I never want to experience this again. I still have one more big chemo, and it's likely to be worse yet. I'm going to have to steel my warrior aspect for it. I told my husband to force me through the doors, if he has to.

By the way, before my fellow Christians give me the "God doesn't ask you to suffer more than you can handle" speech, please read this. Never, ever say that. It's a terrible thing to say. I'll make another post of things you should never say to a cancer survivor.

Let me know your coping techniques here in the comments, or on Twitter, Facebook or Inspire.com.