Archive for January, 2010

Blaming chemo brain

January 31, 2010

I’m back from South Bend, where Harold and I had a great time, and I got to meet some members of his church. His congregation has been wonderfully kind to me — I’ve gotten numerous cards and presents from people who I’ve never met or have a fleeting acquaintance — and it was good to at least see a few of the people in person.

After we came back yesterday, we went out to dinner with Kevin and Sarah to celebrate Kevin’s 21st birthday (which actually was last weekend, but he picked the date and location for the official birthday dinner). We went to a new Mideastern restaurant down the street, where we thoroughly enjoyed the food and each other’s company. The restaurant had maybe the best lentil soup I’ve ever tasted, and Kevin was smacking his lips over his beef and lamb dish.

Afterwards, Kevin came home to retrieve a few things that he needed, including his new driver’s license. It came in the mail last Monday and had been sitting on the kitchen counter for several days but was now nowhere to be found Saturday night. We looked and looked, and I finally found it in the kitchen trash.

I suspect I was the one who put it there — perhaps the onset of the feared and dreaded ‘chemo brain’? That’s the syndrome where chemo temporarily rolls back one’s cognitive functions — Laura Laken, who I talked about in Friday’s post, mentioned it in her blog, and one of Harold’s congregants mentioned it over our Saturday brunch. She’s a medical worker and said there’s a study going on now to actually measure the chemo-brain phenomenon.

Oh, well. Chemo brain didn’t hurt my enjoyment of the MSU-Northwestern game, which I watched while during my daily hour-long stint  on the treadmill. Sports and trashy reality shows are really the best treadmill entertainment, I’ve found. And so now I’m off to the treadmill again, this time to watch (no kidding), “Keeping Up With The Kardashians.”

Matters of life and death

January 29, 2010

I spent yesterday obssesed by the story of Laura Laken, whose obituary appeared in Thursday’s Gazette.

Laken was a 39-year-old choir teacher in Parchment who died of breast cancer last Saturday.  She had been keeping a cancer blog since June 2008, which I read yesterday in its entirety.  She sounded like someone  I would have liked. A lot.  She was devoted to her job and her family, but she also had an edge and made lots of wry observations about cancer and life. (I especially appreciated her rant on the whole pink-ribbon/pink everything movement.)

Her story also was a cautionary tale. Like me, she was diagnosed with stage 3 cancer and put through the standard paces of surgery, chemo and (in her case) radiation, with lots of assurance from medical folks that her prognosis was good.

Last July, five months after she finished her final treatment, a PET/CT scan showed her cancer had spread. At that point, she was told her cancer was “treatable but not curable” although it was possible she would live for years. In October, she went to the doctor with what she thought was pneumonia. Turned out the cancer had spread to her lungs, and she was told she maybe had a year to live.

She lasted another three months.

Her story is particularly tragic because Laken has three young children — a 12-year-old son and 6-year-old twins. I will say that my cancer diagnosis is SO much easier to bear knowing that my children are pretty much grown. Even if the cancer kills me, I’ve been able to raise my children and I’m hugely grateful to have had that. And I’m truly impressed with how Laken seem to have handle her own situation, with lots of grace and humor and a minimum of self-pity.

What I also took away from reading her blog was the cancer really does defy easy predictions. It’s hard to know exactly what course the disease will take;  the worst really can happen, and it can happen quicker than you anticipate.

It’s a reminder of how important it is to really appreciate each day. In that spirit, I suggested to Harold that we have a get-away weekend, which he quickly arranged. He’s already in South Bend, and has arranged for us to have dinner at a jazz club there, followed by a night at a luxury suite at a luxury hotel next to Notre Dame. I’m off to the train station now …

To ladies in the club …

January 26, 2010

Really, one of the best things about having cancer has been some of the people I’ve met along the way.

Today, for instance, I had a wonderful, long, gossipy lunch with a new acquaintance who also has Stage III colon cancer. We are both about the same age, similar backgrounds, children the same age, etc. I’ve met her only once in person before, but we yakked away at lunch like long-time best buds. It was huge fun, and I have the feeling that this friendship will outlast our cancer.

After lunch, I came back to the office and found an e-mail from another new acquaintance, a local radio personality. She found out recently that she has breast cancer and is about my age, similar backgrounds, etc., etc. We’ve never met in person but have talked on the phone and her e-mail today was chatty and funny. (She lamented, for instance, how her 17-year-old daughter’s daily dramas often overshadow the cancer thing — I can totally relate to that. For a teen, it’s hard to focus on mom’s cancer when you have a badly timed pimple outbreak.)

When I was first diagnosed, a couple of co-workers who are cancer survivors said ruefully, “Welcome to the club.”  It really is a fraternity, and not in just a sad, pathetic way.  I find when I’m talking to other people with cancer, it’s often a pretty humorous conversation. 

And today, the lunch conversation wasn’t dominated by cancer at all. Still, we talked about it some, and it was an unspoken subtext throughout the lunch. It’s sort of like the way that pregnant women and new mothers bond with each other — your life suddenly has a new context, and it’s a joy to talk with someone who is going through the same metamorphis.

The genetics of cancer

January 25, 2010

Today, I had an appointment with a genetic counselor/nurse practioner at the West Michigan Cancer Center, and it made for a very interesting meeting.

Bottom line: She suggested that I take a $3,200 blood test that would determine whether I have “Lynch syndrome,” which is a inherited genetic mutation that raises the risk of colon cancer and other cancers as well, including ovarian and cervical.

It’s a possibility because I’ve had a great-aunt, uncle and first cousin with colon cancer, and the first cousin was diagnosed before age 50, and all three come from the same branch of the family tree. That said, it’s not a strong possibility — she put the chances at 12 to 15 percent — since none of my siblings have had cancer and there hasn’t been cases among the relatives of the other kinds of cancer associated with Lynch Syndrome.

On the other hand, if I do have Lynch Syndrome, it would be important information. For one, I’d want to have my lady parts – uterus, ovaries and cervix — taken out pronto since I’d be at high risk of cancer there. Also, I’d be at a much higher risk of a colon cancer reoccurence, so the monitoring of that would be different. Finally, each of my sisters and my kids would have a 50 percent chance of having the mutation, too, so there would be implications for them.

The nurse said that insurance was likely to cover 90 percent of the test costs, and I’m a little sullen about having to shell out $320 to find out if I’m ever sicker than I thought. But I’ll probably have it done.

Beep beep

January 23, 2010

Early Friday afternoon, Harold and I headed off to the West Michigan Cancer Center so they could disconnect the infusion pump that I have to carry around for 48 hours every two weeks.

On the way, we started to hear a loud steady beep in the car. What the hell? I thought it was coming from the dashboard of our Toyoya Corolla. Harold thought it was coming from the backseat. As I drove down West Main, Harold thumbed through the Toyota owner’s manual to no avail.

He had me pull over in a parking lot to check under the hood. Not coming from there, he announced. He had me get out of the car, and he got in the driver’s seat  and closed the doors. The beeping stopped, he announced. I gave him a disgusted look. No, no, the beeping was as loud as ever. I got into the car and closed the doors with him. “It stopped, right?” he asked. Nope, I said. This guy needed to get his hearing checked, I thought to myself.

“Let’s not deal with it now,” I said. “I really want to get this pump off.” So we went to the WMCC, with that annoying beep beep beep beep sounding all the way.

Harold pulled up in front of the entrance and told me to go in alone; he was going to stay in the car and try to resolve the beep problem. As I walked into the WMCC lobby, I noticed the beep hadn’t gone away. Beep beep beep. Was it in my purse? Ah, no! It was my infusion pump! Which was beeping to signify that the chemo drug had run out!

How dumb are we?

At any rate, Round Three of chemo is officially history, although I’m still feeling the aftereffects today. Definitely lots of queasiness and fatigue — got out of bed today after 11 this morning and then I went back for a  nap from 2 to 7. In short, a pretty  unproductive Saturday, although there are much worse things than a day in bad.

So far, so good

January 20, 2010

Round 3 of chemo went off today without a hitch. Stretched out in my Barcolounger during the treatment. Got a free foot massagetreatment. My friend Rosemary brought me lunch. Kat picked up at the end; it was her first time in the West Michigan Cancer Center and she was duly impressed by the plush decor, the soothing atmosphere, the nice volunteer offering her snacks and hot chocolate.

(In fact, Kat came home and called her boyfriend to announce, “One of us needs to get cancer, because the West Michigan Center Center is the bomb.” He was unpersuaded, pointing out there are much easier ways to score a free cocoa.)

So far, so the side effects have been pretty minimal.  Thanks to sedatives they put in the chemo, I napped on the couch after I got home. But Kat and I went out to dinner tonight, and I also did a brisk, 4-mile walk on the treadmill, which tells you something. I did notice that food has a metallic taste and there’s a weird tickle in the back of my throat when I’m eating.

I also have an infusion pump around my waist that’s giving me chemo for the next 42 hours — it’s scheduled to come off at 4 p.m. Friday. My experience last time was that I don’t feel the full impact of the chemo until I get the whole dose of drugs, which suggests that Friday night and Saturday will be the real test in terms of side effects.

Bracing for Round 3

January 19, 2010

Back to the chemo shop tomorrow for my third treatment. Because I’ve accummulated a bunch of comp time at work, I’m off for the rest of the week, which means if this round knocks me for a loop, at least I can suffer in bed versus fading over a keyboard in the newsroom.

My aunt e-mailed me today that she was telling her hairdresser about my cancer bills. The hairdresser said that her mother died of breast cancer, which puts the hairdresser at a higher risk of developing cancer herself. The woman’s doctor has been pressuring her to get a mammogram,but the woman doesn’t have health insurance. From her standpoint, even if the mammogram found cancer, she wouldn’t have the money to pay for treatment.

According to the American Cancer Society, 20 percent of cancer patients delay or do not get treatment because of the cost.

Guess how much chemo costs?

January 17, 2010

I got my bill for the first round of chemotherapy, and it was nothing short of flabbergasting.

The total bill: $14,058.  Amount paid by Aetna: $5,849.  (Incidentally, I’m not paying anything out of pocket so far, thanks to a health-savings account that’s part of the Gazette insurance plan.)

Think about this. At $14,058 a round, the whole course of treatment costs almost $170,000 at full price. Even at Aetna’s negotiated rate, it’s almost $70,000.

What would I do if I didn’t have insurance?  And the reality is that this chemo is a mop-up operation; I may not need it at all. If I had to self-pay or had high deductibles, would I be willing to bankrupt my family for a 20 percent chance of warding off a cancer reoccurrence?

Incidentally, the single-biggest expense of the chemo is a drug called Eloxatin (also called oxaliplatin). Because it’s fairly new and still under patent, the bill for that alone was $8,400, of which Aetna paid $3,229.
 Two interesting points about this drug: This is the one that has the “devastating” and possibly permanent side effects, which has me wondering about whether I should even be taking it. Also, it’s not the most important drug in my treatment. The U-M doc said the Eloxatin provides about 20 percent of the benefit of the chemo. That means it  probably improves my overall survival chances by 4 percent.
Maybe you can make an argument for Eloxatin in my case because of my age. But the median age for colon cancer patients is 71. Do the expense and the side effects justify its usage? Nobody seems to be talking about that much, from what I can tell; this drug is a standard part of the colon cancer treatment.
And here’s another thing: Turns out that chemo costs are billed by the doctor that prescribes it. So the money isn’t going to the West Michigan Cancer Center — it goes to my oncologist (who then gives the WMCC a cut). Half to two-thirds of an oncologist’s income comes from their patients’ chemo treatment. Does that sort of seem like a conflict of interest?
I like my oncologist, and I realize he didn’t invent this system. I also fully recognize that he’s in charge of saving my life. Plus, I’m one of those lucky patients with great insurance. But still ….

Food for thought

January 16, 2010

After reading the anticancer book described in the last post, I made a resolution to try to eat some “anticancer” foods every day. That shouldn’t be too hard, since there’s lots of stuff I like on the list.

For instance, the spices in Indian food apparently act as a cancer pesticide. So I went to the local Indian buffet for lunch. Then it was off to Meijer to buy fresh raspberrries, cherries and other fresh produce. Then I came home and made a cabbage and kale casserole from a recipe I found last year in the New York Times.

We’ll see how long my good intentions last.

I also got an e-mail today from a friend who just got a colonoscopy — “specifically because of you,” he wrote. I feel like I should be getting a cut on the colonoscopy trade these days, and it does seem to be a pretty lucrative business. My gastroenterologist told me last week that he does about 30 colonoscopies a week.  I came home and looked up his bill for mine; he charged Aetna $1,212 and Aetna paid $993. (That was just his fee, and excludes the other costs). Assuming that’s an average bill, that’s $30,000 a week for colonoscopies. And he just does colonoscopies in the mornings; in the afternoons, he sees patients in his office.  Think about it, and it’s interesting glimpse into health-care costs ….

The anti-cancer book

January 15, 2010

Harold went to the library this week and checked out a book titled “Anticancer: A New Way of Life” by David Servan-Schreiber,  a psychiatry professor at University of Pittsburg who had a malignant brain tumor 15 years ago.

The gist: Servan-Schreiber was looking for ways to boost his survival, and used his skills as a medical researcher to assemble a list of ways that patients can approve their odds. His strategies focus most heavily on diet, exercise and mental health.

On diet, Servan-Schreiber says the Western world’s diet basically serves as “fertilizer” for cancer cells, and those looking to minimize their cancer risks would do well to stay away from white sugar, white flour and red meat. He also offers a list of foods that stimulate the body to fight cancer cells. Interestingly enough, garlic was at the top of that list. Among some of the other anti-cancer foods: Cabbage, green tea, red wine, raspberries and blueberries, and dark chocolate.

Servan-Schreiber said exercise definitely helps cancer survivors fight off reoccurrence, but the level of exercise needed depends on the type of cancer. For colon cancer, he prescribes walking an hour for 6 days a week at a rate of 2 or 3 miles per hour, at minimum. (Actually, that’s no problem for me: I’ve been doing an hour a day on a treadmill at a 4 mph setting.)

On mental health: This was probably the least applicable to me. Servan-Schreiber suggests that many cancer patients are people with “inner pain” that they’ve repressed, and that’s no coincidence that cancer tends to pop up or reoccur when someone is having a life crisis. He even says there’s a “cancer personality” — that just as many heart patients have Type A/aggressive personalities, many cancer patients have a Type C/passive personality, where they avoid conflict at their own peril.

I mentioned to Harold and Sarah about the “cancer personality.” I do not fit that profile at all, they said. Plus, the inner pain and life crisis issues don’t seem to fit my case. Or did perhaps the death spiral of print journalism kick-start my tumor?

What I took out of the book: Eat lots more fruits and vegetables, and a lot less sugar and stuff made with white flour. (Ironically, since my surgery, I’ve had an intense craving for raspberries and have been buying them often in those little over-priced cartons.)