Archive for March, 2010

Goodbye to Oxaliplatin

March 31, 2010

Treatment No. 8 went fine today. I mostly slept through the 3-hour treatment, then took my chauffeur/sister Colleen out to lunch and then went home and slept another three hours.

But the headline news is that my doctor and I decided to discontinue the use of Oxaliplatin (the generic name for Eloxatin), one of the three main drugs in my chemo cocktail. The Oxaliplatin is the drug that causes cold sensitivity and neuropathy in the hands and feet. I haven’t had much problems with cold sensitivity —  outside of  no drinks w/ ice or ice cream for the days following chemo — but for the past two weeks, I have had intermitment tingling and numbness in my hands and feet. Several examples: Two days after my last chemo, it hurt too much to clap my hands at a K-Central basketball ball. The palms were just too sensitive. It’s also been painful to open medicine bottles because the ribbing on the screwtops hurts my fingertips. Finally, on the day that Kevin and I were returning from Mexico, I found myself limping through the Detroit and Cancun airports because my feet were numb.

None of this is particularly awful, but the neuropathy caused by Oxaliplatin is  cumulative and can be permanent. (In fact, I had dinner Saturday night with someone who has  still has hand/feet neuropathy from chemo two decades ago for lymphoma.)  Since I make my living by typing,I told the doctor that keeping my hands in good working order is a top priority and I’d be more than willing to shave a few percentages points off my chances of a cancer reoccurrence to protect my hands and feet.

No argument from him. He said he absolutely agreed, and added even  if I wasn’t pushing for it, he would be pulling the Oxaliplatin for the mix for these very reasons. He said that that limping 9 days after chemo was a real warning sign.

He said there were three options now: Just stick with the other two drugs that I’ve been using and leave it at that, or there were two other drugs that could be subbed for the Oxaliplatin. But one of those drugs,which has been proven to help stage 4 colon cancer patients,  has minimal impact on Stage 3 patients,so he said he didn’t recommend that. The other drug, a pill called Xeloda, could help, but the problem there is that Xeloda would likely excerabate my hand and foot issues, so forget that, too. 

Bottom line: We’re going with option No. 1. The doctor said that it’s not unuual to have the cut off the Oxaliplatin at some point because of neuropathy, and muttered that he’s had many conversations/disagreements with drug reps about the drug’s toxicity and  about how the drug’s side effects can outweigh its benefits.

So what does kicking Oxaliplatin mean in terms of the numbers? In general, chemo reduces the chances of a colon cancer recurrence from  37% to 16%. About 80 percent of the chemo benefit cames from the two drugs that I’m still using and Oxaliplatin accounts for the rest, and I’ve got about half of the benefit from the Oxaliplatin that I’ve taken so far. So when everything is said and done, from what I can calculate, eliminating Oxaliplatin at this stage in the game ups the odds of a cancer reocurrence from something like 16% to 18%.  That seems like a decent trade off  for keeping my hands and feet healthy. My dinner partner companion on Saturday says chemo saved his life, but the lingering neuropathy is a bitch.

Incidentally, eliminating Oxaplatin should cut the cost of my chemo treatments by more than half. It’s not only a nasty drug, but it’s very expensive — the Cancer Center bill for that drug is $8,400 and Aetna’s negotatied price is $3,239 — per treatment.

In other news, about half the skin on my right  little toe completely shed off yesterday, exposing raw skin. I’ve got it all bandaged up. In fact, I’ve got all those band-aids on my various part of my feet now, covering blisters and places that have been rubbed raw.  “Stay off the treadmill for now,” a nurse said today, and she’s probably right. The last thing I need is an infected foot at a time when my immune system is working half-time and my platelets are low.


Treatment No. 8 coming up

March 30, 2010

Back to the chemo farm Wednesday, along with a doctor’s visit. I’ve been having intermittent tingling and numbness in my hands and feet, so that’s something to bounce off the doctor.

But mostly, I haven’t been that focused on the cancer thing in the past few days. Saturday, it was all about K-Central basketball, which won the Class A state championship for the first time since 1951. I wanted to go so badly to the game, but had a dinner-party engagment in South Bend that was unbreakable. So I watched the first quarter of the game on TV and then had my sister Colleen, who was at the game, and my mother, who was watching the game at home, phoned me with periodic updates as I drove to South Bend. For the first seconds of the game, Colleen called and simply held up her cell phone so I could hear the cheers of the Central fans.

I wasn’t the only one monitoring the game long distance — Marcia was calling Colleen from Mexico, where she and her family were spending spring break, and Kat was getting updates in Florida, where she was on a school band trip. (Yes, it was terrible timing to have the band gone while the b-ball team was playing for the state title.)

On Sunday, it was all about Michigan State basketball — except Central scheduled their victory celebration during that game. I had to go to the Central event to write a story for the paper, but Colleen was there and getting MSU game updates from home and sidled up and whispered that State had won by a point. Probably just as well that I didn’t watch — I get far too wound up during these close games.

My highlight today was lunch with a friend who just finished her treatment for colon cancer. We actually spent much of the lunch talking about her father, who died two weeks ago. She was very close to her dad and the death was unexpected, so there was a lot to process.

The joys of air-brushed Mexico

March 27, 2010

So Kevin and I are back, with reluctance.  We were both beguiled by Mexico.

The vacation definitely exceeded our expectations. The resort was prettier. The food was tastier. We enjoyed the drinks-included part much more than we expected. And Chichen Itza — which we visited on a daylong trip to the Yucatan interior — was awesome.

Plus, I didn’t get sick or have any side effects that derailed the vacation.

One of the highlights of the trip, as it turned out, was traveling with Kevin, who proved to be a perfect travel companion. First, it made me aware that he really has moved beyond the quirks that come from traveling with teens — the sulks, the pouts, the acting as if the parent is a moron. It was like traveling with another adult. Second, once we got to Mexico on Monday morning, he completely took over handling any logistics — from converting dollars to pesos, to figuring out the layout of the resort, to scheduling our day. That was heaven. Third, he was an amusing, witty, well-informed, cheerful companion. It was fun just spending time with him.

We stayed at a resort on the Mexico Riviera that billed itself as an “eco-resort” — literally and symbolically green. It was on the Caribbean, so lots of nice beach, but most of the rooms — including ours — were actually in a rain-forest setting, very green and lush, with iguanas and macaws and peacocks roaming the grounds.

The resort was an all-you-can-eat and all-you-drink place, and we took liberal advantage of both. This being on the Caribbean, they had plenty of fresh seafood and fish, which I literally had for every meal, along with lots and lots and lots of fresh fruit. Before we left, we poohed-poohed the all-you-can-drink part — neither of us are big drinkers. But once we got there, it was sort of like, what the hell.

So it was champagne and orange juice for breakfast, than 11 a.m. strawberry dacquiris,  which we sipped from the veranda of a beachfront bar overlooking the Caribbean. From there, wine with lunch. We went out an outing each afternoon and came back in time for our own happy hour at yet another resort bar, and then dinner — with more wine. Then an after-dinner drink before bed. We never got drunk — they mix the drinks with a light hand, not surprisingly — and we spaced the drinks out enough to let our livers process them.  But for someone who normally has a couple of drinks a month, at most, it was a lot of alcohol. For those choosing a beach-and-booze vacation, this was definitely paradise. For instance, the minibar in our room was stocked with Mexican beer and a bottle of champagne , as well as soft drinks — all complementary — and was restocked daily.

All in all, a great trip.

Outfitting pumpkin head

March 20, 2010

I’m continuing to feel surprisingly chipper this weekend. I thought I’d be spending the weekend in bed. Instead, I’ve gotten a surprising amount done, including packing for Mexico.

I’ve made two trips to Target, one to Meijer and another to Walgreen’s in the last 24 hours. Kat went with me on one of the Target trips, which turned into a bit of drama over picking out sunglasses for her trip to Florida next week with the K-Central band. She insists she doesn’t look good in ANY sunglasses because she has a round face. “Sunglasses don’t look good on a pumpkin head,” she declared. She finally settled on a pair of aviator-style glasses that looked just fine.

Although I’m feeling much better than expected today, every chemo round seems to introduce some new, fleeting, weird side effect and this one is no different.  Although for this one, I offer a reader alert for those squeamish about body functions. Feel free to stop reading right now.

At any rate, this week’s fun is  an issue with incontinence. Twice yesterday, I wet my pants with NO warning whatsoever — not a urine-running-down-the-leg situation but enough to definitely require an underwear change.  I looked it up on the Internet, and sure enough, incontinence can be an issue for women getting chemo or radiation for pelvic cancers. Great. Let’s just say that I’m packing plenty of pantiliners for Mexico. And hoping, that like the week my hair was shedding like crazy, this is a very temporary condition.

Family time

March 19, 2010

I’m feeling surprisingly good today, considering it’s two days after chemo and usually I’m feeling pretty crappy at this point. Hands and feet are feeling intermittedly buzzy and tender, but no nausea or fatigue.

Instead, it was a surprisingly busy and productive day. I was off work, so I went to lunch with two women I haven’t seen since October and they were shocked at how good I look. (“I thought I’d be having to be politely looking away,” one of the women chirped.)

From there, I spent the rest of the afternoon running errands to get ready for my trip next week. Got home and, lo and behold, for the first time in months, everybody was home — Harold was back from South Bend, Kevin was on break, Sarah stopped home to do laundry, Kathryn wheeled in after track practice. I cooked up lasagna that I had frozen a few weeks ago, added rolls and a spinach-bacon salad and we had a real family dinner.

It was actually quite a hoot. Sarah said a friend was trying to convince her to go to Ann Arbor’s Hash Bash, but she said she didn’t know if she wanted to spend a day steeped in “all that pretentious hippy vibe.” That led to a big debate among all three kids about whether pot use at University of Michigan equaled the drinking at MSU. MSU might have the edge, they decided, but only because alcohol is more accessible. That led to a segue in which Sarah announced that six of her friends have gotten medical-marijuana cards, which led to a debate over when medical marijuana is legit. Then Kat told a story about how a friend of hers insisted that there’s no bad pot in Ann Arbor — a perfect example, she said, of how U-M types are pretentious even about being potheads. All in all, it was a pretty entertaining conversation.

To cap off the day, MSU won — in ugly fashion, but a win nonetheless.

Treatment No. 7

March 17, 2010

Today was treatment number 7, but even though I spent five hours at the cancer center getting poisons pumped into my body, it was actually a fine day.

Kevin was my chauffeur today, dropping me and picking me up and while I was the center, he cleaned out his room to move home for spring break. Afterwards, we went out to lunch to one his favorite restaurants, a Chinese place down the street, so he was quite happy.

I took a nap and then had Kevin drive me to the Y, where I had a massage scheduled — and it was actually my third massage of the day. At the cancer center, the morning massage therapist did both my hands and feet and the afternoon person did my feet. Then came the full-body massage at the Y. A day with three massages ranks very high for me.

But there’s more! It was a beautiful spring day here in Kalamazoo, so Kevin and took the dog for a walk in the park. Then I headed over to Kalamazoo Central, where the boys’ basketball team was playing for the regional championship. K-Central crushed Holt; the final score was 69-44. It was standing room only in the gym. Kathryn sat in front row of the student section with her cousins Cara and Cailey Cunliffe, and most of the students were wearing green in honor of St. Patrick’s Day. In the final seconds of the game, the students stood up and gave a rousing version of the school fight song, followed by “Na-na-na- na, hey, hey, good bye.” Meanwhile, I sat with my sister Colleen and her family. It was great fun.

The one negative today: Both the palms of my hands and soles of my feet are tender and tingling today from the chemo.  Clapping at the game hurt. Picking up a chilled bottle of water hurt. Ugh.

Getting Aetna’s attention

March 16, 2010

My newspaper column on Saturday ripped off a blog item from here, venting about my various travails with medical bills. 

One interesting piece of feedback: A former co-worker from my Hartford Courant days now works at Aetna’s headquarters in Hartford. She said my column was being distributed internally by company officials.

Maybe that explains why I got an e-mail today from Aetna saying that my $2,300 bill from Borgess was being reprocessed and corrected.

Tomorrow is treatment No. 7, and I’m keeping my fingers crossed that all goes well because I really do not want anything to interfere with the Mexico trip, which starts Monday.  I did, however, make a point of buying trip insurance, which I normally don’t do. It covers trip cancellations, interruptions and also will provide me with up to $30,000 in emergency medical care.  On one hand, I figure all should be fine: If I can handle three 12-hour workdays in a row, surely I can handle a Mexican resort. But I also know that Unexpected Things Could Happen.

Resting up

March 13, 2010

So, yes, I got my Sunday story done by 11 and I’m feeling much, much better today. Sleep does wonders.

On the whole, it was a pretty relaxing day, although I cruised into the office for about an hour to tweak the said Sunday story and chat with an editor about it.  He praised me for vomiting stories this week, while simultaneously telling me to take care of myself. Definitely a mixed message. Journalists may say that health is the most important thing, but bottom line? We’re all about the story.

Poor little cancer girl

March 12, 2010

Ohhh, I’m definitely feeling like a cancer patient tonight.

Much of the reason is self-inflicted, and boils down to taking on too much at work. The journalist in me tends to stomp down any “take care of yourself” instincts. I just cannot stand to let good stories go unreported.

So after my long day on Wednesday, I was woken up Thursday at 6 a.m. by the Portage school board member who resigned and was calling me on my cell from Myrtle Beach. I was hugely grateful to hear from him, but 6 a.m.??!! No matter. I fumbled for pad and pen and did an interview. Around 7, another Portage board member called and so did a third at 8:30-ish. So much for sleeping in, and I had another long day — morning press conference, afternoon meeting with the Kalamazoo superintendent, evening banquet speech to cover, and plus three stories to write involving my day’s activities.

So basically, I worked morning, noon and night Thursday, came home and collapsed to ready myself for another marathon day on Friday. I started today with  the morning cops shift, which required me to be the first reporter in the office, plus I had my Saturday column to write, a big Sunday story on the drama in Portage — and to top it off, the state released MEAP test scores.

The column came together fast, I slammed together a MEAP story and chart, but the Sunday story was a killer. I was on the phone all day doing interviews and trying to write in between, but the story kept changing. On top of it all, I wasn’t feeling that great. Yesterday, I coughed up some bloody sputum, which sort of unnerved me (and the doc’s office still hasn’t called me back on that), plus some serious, chemo-induced constipation had kicked in, which I dealt with through a cocktail of remedies that kicked in today and left me beating a constant path to the office ladies’ room.  By 7,  I was exhausted, dehydrated and shaky — and the Sunday story still wasn’t done. “Can you have it done by 11 tomorrow?” the story editor said.

Yes, I promised, and fled home and went straight to bed, grateful that Sarah agreed to take Harold to the Amtrak station, where he needed to catch a 9 p.m. train.  But 15 minutes after Sarah and Harold left, Harold called me, all sheepish. He had left his keys at home. Was there any possibility I could run them to the train station? Argh.

So part of me is feeling very martyr-ish right now.  But another part of me reminds that (a.) I largely brought this week on myself and (b.) for all the headaches, it was a very productive week, with many good things.

Among those good things: I found yesterday that I won second place in a national journalism contest for education writers and my trip to Mexico is all set. I also had some positive things on the cancer-related front, including a delightfully long and gossipy lunch Tuesday with a fellow cancer patient; a touching card from a co-worker who said she was impressed and inspired by how well I was dealing with things, and several calls from friends and acquaintances to check on how I was doing. Plus, when I came home exhausted tonight, Sarah very sweetly snapped to attention — “Can I make you food? Make you tea?”  So even through it was an extraordinarily exhausting week, it’s been a GOOD week.

And today’s sort-of funny story: I had an e-mail from a reader Thursday who pointed out that my Wednesday story on the Portage school board  was missing a word in one sentence and had an extra word in another sentence. She then royally lambasted me for my “lack of professionalism.” I wrote her back, and explained that the story was written at the end of a 12-hour day and, oh, by the way, I’M ON CHEMO. She then suggested that if I couldn’t do my job right, perhaps I should go on medical leave, although she did seem appalled that a chemo patient was working a 12-hour day. Hey, I wrote back, I don’t like working 12-hour days and my bosses don’t like me working 12-hour days, but when news happens, news happens. And I’m not going on medical leave. So there.

Giving in to impulse

March 10, 2010

It’s been a long, busy and VERY interesting day.

The headline news: Kevin and I are going to a Mexican resort the week after next, on a whim that I cooked up and carried out today.

I love going someplace warm in the winter, and for the past few weeks I’ve been green with envy about my parents’ month in Palm Springs, Calif.  Over the weekend, I convinced myself (and, trust me,  it didn’t take much convincing) that I needed, I DESERVED to go someplace, too. But where? And with whom?

I knew Harold has neither the time or inclination for a spring break trip; it’s not his thing AT ALL. But as it turns out, Kevin has spring break starting March 19 and isn’t doing anything that week — and has a very healthy bank account that  allows traveling to be Dutch treat. He also can be an excellent travel companion. So today, I called him and proposed a trip on the condition that we each pay our own way. He was surprisingly open to the idea — one reason is that he has a big bank account is that he is horribly, notoriously tight-fisted, so his agreeability was not only delightful but unexpected.

At any rate, I headed over to a travel agent and asked about last-minute deals. It didn’t look very promising at first (“It’s spring break time,” she frowned) but then came up with four nights on the Mexico Riviera, four-star inclusive resort for $570 per person including hotel, unlimited food and drink, direct flight from Detroit, taxes and fees. “I’ve never seen a price that low” for this particular package, she said. I called Kevin and we booked it.

Now I had to break the news to the rest of the family. Sarah was completely supportive — until she found out where we were going  “MEXICO???!!!” she said. I guess she was thinking Chicago. Kathryn is going to Florida with her band for spring break during that time, but she announced that she definitely would have chosen this trip over Florida and announced “I’m sort of mad about this.”

I told them both that when they are college seniors, I’d be more than willing to take them on a cool spring break trip and let them pay their own way. Which sort of shut them up.

Harold didn’t even ask where we were going, but expressed hurt that his idea of visiting his sister in rural Iowa and his elderly uncle in rural Ohio has absolutely no appeal for the three kids. (See what I mean about the Mexico Riveria not being his thing?) Part of me thinks that my trip with Kevin has nothing to do with Harold visiting relatives (and, unlike the kids, I’m totally down with going to Iowa/Ohio). But part of me realizes I need to do some more massaging on that front.

Meanwhile, in the midst of making all these plans, I headed over to the Cancer Center so that I could get a $15 blood test to tell me if I needed another $8,700 shot to boost my immune answer. Answer: No.

In between trip planning and blood tests, I put in a full day’s worth of work and was putting on my coat to go out the door around 5 when I cruised my e-mail one last time and — OMG, breaking news! The Portage school board president quit, four months after the last Portage school board president quit. On top of that, when I started calling people to find out what was going on, I heard how latest president quit out of frustration with the superintendent — and when I reached the superintendent, this was all news to her. Bottom line: Lots of drama, Page 1 story. I didn’t get out of the office until about a dozen phone calls and four hours later.

And now I’m looking at another long day at work tomorrow, but I’ll try to make it up with a truncuated day on Friday. My bosses were grateful for the Page 1 story today, but say they don’t want me collapsing — at least on their watch.

Oh, and to circle back to Friday’s post and my frustration with health-care billing. Turns out that the out-of-network problem stemmed from Borgess supplying Aetna with the wrong tax ID number for the Woodbridge outpatient clinic. Both Aetna and Borgess assure me that they’re ironing it out. We’ll see.