I had a haircut today, and my stylist says that she can tell my hair has been affected by the chemo.
But the surprising good news: It’s for the better, she says.
“You have enough hair for 15 people,” she said, and could stand to lose some. She said that the thinning that’s occurred makes it “normal.” She also said that my hair feels finer in texture, and then she added, “I like it.”
So if my hair could just stay like this ….
I’ve had two people in the past week tell me how good I’m looking these days. And not just a casual, “Haven’t seen you in a while. You look good.” More along the lines of: “OMG! You look great! Really great! I mean it!”
Since I haven’t had a facelift, a makeover, a wardrobe redo or a dramatic weight loss, it’s safe to say that what people are really saying is: “You don’t look sick.”
Which is absolutely true. I look normal. The same. As long as I keep my surgery scars hidden — not hard in winter — you would never, ever know just by looking at me that I’m battling the Big C.
That’s basically a good thing. I’m sure it’s one reason that my kids and my co-workers are pretty nonchalant about things, and it keeps me from obsessing every time I look in the mirror. But it also is one of the weirder aspects of having a cancer — I look the same and, if it wasn’t for the chemo, I’d even feel the same. After all, all my aches and pains right now are from side effects of the drugs, not the cancer itself. Harold has pointed out more than once that it makes the cancer seem more unreal.
At any rate, he and I are working off the assumption that this isn’t some huge practical joke and the chemo really is necessary. Speaking of the chemo, I’ve spent much of my Saturday in bed, but once again it’s been more a matter of fatigue than pain and nausea — and spending a cold February in bed with a pile of books isn’t necessary a bad thing at all. Also, as I lounged in bed, Harold gave the kitchen and main bathroom a thorough cleaning, God bless his soul.
Yesterday, I played Superwoman. Today, I’m playing wimp.
Actually, I felt great on Thursday — and just as well since, as it turned out, I ended up working a double shift. It wasn’t meanness on the part of my bosses (they were actually sort of appalled at my work schedule) but just a matter of how the chips fell in terms of my various job responsibilities. My original plan was to work in the morning, take the afternoon off and cover a night meeting. But my morning plans blew up because of a complications with a story, which meant I was at work until 4. Then my evening meeting, usually a quicky deal, went two and a half hours and, instead of having to write one story out of the meeting, I ended up writing four. Bottom line: A workday that started at 8 ended at midnight.
So today, I crashed. Just as well, since I feel icky. Queasy stomach, exhausted and — talk about weird side effects — my tongue is numb and my lips are buzzing. It didn’t help that when I had my infusion pump removed today, they had to give me a shot to boost my immune system, the result of a too-low white blood count. The shot just makes me feel more achy and tired.
The bright spot today was the Harold was home and offered lots of pampering, including fetching a Subway veggie sandwich when I decided it was the only thing that sounded good to eat. Even after sleeping in, I took an afternoon nap and now I’m watching “Groundhog’s Day.” It seems appropriate, since I’m guessing tomorrow will be more of the same for me….
So I’m sure readers of this blog were laying awake last night, wondering about the identity of the Mr. VIP whom I was to interview today.
It was State Superintendent Michael Flanagan. Oh, you didn’t know that Michigan had a state superintendent? You’ve never heard of Mr. Flanagan?
Welcome to my life, where school officials breathlessly arrange events and swear me to secrecy and the reality is that NOBODY ELSE CARES. Trust me, when I mentioned to my editors that Flanagan was visiting Kalamazoo Public Schools today, there was not “OMG!” No “stop the presses!” It was just another story on the story budget.
Still, Mr. Flanagan was very nice, and I got a surprising number of meaty quotes considering our short time together. And after running back and forth all day between various story assignments and the West Michigan Cancer Cancer, I ended up back at the newsroom to write up the Flanagan stuff for Thursday’s paper. There was some irony there — because of the sedatives in the chemo, I wasn’t allowed to drive home, but that didn’t stop me from writing an A1 story. Hope it gets edited carefully!
At any rate, the chemo session — which was suppose to be the marquee event today but got quickly overshadowed — went just fine. The one problem area was my white-blood count is low enough that I’m going to need a special injection when I get my pump off on Friday. The injection is to boost my immune system but could cause achy muscles and joint for a few days. Or not. We’ll see.
So I finally got home today at 6, and called Harold, who unwittingly unleased a household drama.
The backstory: We discovered Sunday that our water heater was leaking, and got it replaced on Tuesday. But during those days it was leaking, Harold unplugged our basement freezer to plug in a shop-vac to suck up the water. Only he forgot to replug the freezer. To his shock (he obviously had lost track of how long the freezer was unplugged) and my dismay, by the time he finally mentioned it tonight, the food was still cold but definitely defrosted, which meant that I had to clean out the freezer tonight and figure out what to do with about 10 pounds of previously frozen blueberries.
Good thing Kat likes smoothies.
Since I have a chemo session on Wednesday, I tucked into a long day at work today to finish up a big story scheduled to run on Saturday and finish up other odds and ends.
Then I got a call from Kalamazoo Public Schools saying that a VIP is scheduled to visit the school district tomorrow, and the person would be taking question from 11:10 to 11:20 a.m. (I’m not allowed to disclose the name of the VIP until tomorrow , although, trust me, it’s not exciting as it sounds.)
Still, I was thrilled, mainly because it was a VIP that I had been unsuccessfully trying to reach for my Sunday story. On the other hand, the mini-press conference was right in the middle of my time at the West Michigan Cancer Center. Oh, what to do, what to do ….
So quick call to WMCC. Could they reschedule my blood draw and oncologist appointment a bit earlier, so I could get to the press conference? And then could they reschedule my chemo for a bit later, after I finish with Mr. VIP? Yes, they could!
So that leaves me with this schedule tomorrow:
8 a.m.: Previously scheduled interview w/ KPS curriculum director for yet another story.
9:30: Blood draw.
10: Doctor.
11: Press conference.
Noon: Chemo.
Oh, but the complications don’t end there! As a result of all this running around, it occurred to me that I’d end up at WMCC tomorrow afternoon with my car there — only I’m not allowed to drive home. So more phone calls, more arrangements.My sister Marcia agreed to pick up Kathryn and bring her to WMCC, and Kat can drive me home.
If nothing else, my bosses were impressed that I was running out to a press conference in the middle of my chemo day. “Above and beyond the call of duty,” said the managing editor.
But they also were, like, “So you can turn a story on (Mr. VIP) for Thursday’s paper? Doesn’t have to be long …”
Ah, journalism.
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.”
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 …
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.
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.
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.
