Friday, May 30, 2008

Cancer on the road

One of the big question marks on this trip was how I'd be able to continue my monthly chemotherapy while on the road for two or three months.

It's difficult enough at home to make sure the doctor's office communicates with the mail-order pharmacy people and that the drugs then get delivered to my house. During Pie in the Sky, I'd not only have those regular hassles but need to arrange for weekly blood draws, with results faxed back to Seattle, and for my monthly dosage of chemo drugs to be mailed someplace where I'd be able to take delivery.

I spent quite a bit of time talking all this through with my doctors and pharmacist. The oncologist's office gave me weeks' worth of blood-lab slips that could be completed at any lab and faxed back. We'd talk by phone on certain dates and I'd report on my activities and condition; I could even go through the "squeeze my finger, stand on one foot" routine if that would help. Caremark, my doctor suggested, might be able to send me a triple-order of Temodar -- enough to cover all our time on the road -- to avoid the long-distance mail coordination. OK, great.

But then just before we left Seattle Caremark said it couldn't do that after all. The drugs are too expensive -- several thousand bucks per five-day dose -- and what if the drugs got lost or Dr. Spence wanted to change my standard 300 mg/day prescription?

So, fine, I left Seattle with one course of drugs, which I began taking in Los Angeles after dinner at Kaye and Val's. No problemo.

Weeks on the road came and went. I skipped one blood draw, which I'm supposed to get every week, but by our third week out -- two weeks after the chemo -- it was time to look for a lab.

Michelle and I were at a Starbucks in Savannah, Ga., one morning when we saw a bunch of 20-somethings wearing scrubs walk in to get some coffee. Michelle asked them whether there was a blood lab around and they directed us down the street to a little strip mall. I checked in at the front desk and waited with another dozen or so people for my name to be called. Half an hour later the woman called me up to the window.

"Where is this again," she asked. Seattle, I said. Dr. Spence asked that the lab slip be faxed back to his office; the number is right here.

"Well," she said, "we don't have an account with anyone there. The only one we have is an OB/GYN." I assured her my doctor wasn't a gynecologist and she sent me back to sit down. After another 20 minutes, just as I was ready to give up and find a real hospital, they miraculously solved the bookkeeping snafu and called me in for the blood draw. One down.

A week later, in Atlantic City, we resolved to stay away from mom-and-pop blood shops. Instead, we walked down to the big Atlantic City Medical Center, Frank Sinatra Wing -- "Taking You Well Into the Future" -- and looked forward to some professional medical care.

I don't know why it should be so difficult to get a blood draw. Inside the front door a guard directed us to the second floor, where another guard gave me a visitor's pass allowing me to walk 20 feet across a small atrium to a receptionist who walked me around the corner to a larger walk-in reception room. There we waited another 15 or 20 minutes to be called to a desk where a woman loudly asked for and recorded a lot of unnecessary personal information, including my Social Security number and employment status, while a second clerk grumbled aloud about having to wait to take her lunch break. It was 12:15.

Eventually it was my turn and the grumbly clerk walked Michelle and me through a maze of halls to another office with a small waiting room and two staff ladies. "Take a seat," one of them said. "We won't be able to get to you until 1 o'clock."

Really? I said. Another 45 minutes just for a blood draw?

"Blood draw? This is endoscopy," she said. Without even knowing that that meant sticking a long tube down my throat, I knew it sounded like a procedure I didn't want or need. Argh. Finally we dismissed our grumbly, lame-ass tour guide and found the blood lab ourselves, where the phlebotomist poked my arm and sent us on our way. Sheesh.

Even then, I spent a full day playing phone tag with Jennifer, the nurse practitioner in Dr. Spence's office, before an assistant told me Jennifer had sent the prescription into Caremark. And then I spent a good half-hour on the phone with Caremark re-explaining the road trip thing and arranging to have the drugs delivered the following day -- last Friday -- to Ronelle and Aunt Chickie's house in New Jersey.

But when we got to Chck's on Friday night, no drugs. I checked my e-mail to find an urgent message from my sister Michele. She had driven by our house and noticed a package on my porch. The idiots sent the drugs to my home address!

How lucky that Mich happened to drive by. She FedExed the package to New Jersey, nice sister, but it didn't arrive until Monday morning. That meant another day of kicking everyone's butt there in the Wii Championship of the World and eating another meal of ziti and chicken parmigiana. So maybe the late delivery wasn't such a disaster after all, but still.

Fortunately, the drugs themselves have gone down pretty easy. Tonight's dose will be my fifth and final of this course. I've been tired as usual -- I slept in the car yesterday and took a nice nap today at Nauset Beach here on Cape Cod (above) -- but otherwise feel pretty good.

Who knows where we'll be when it's time to run the medical gauntlet again.


Ronelle said...

Hmmmmm...I wonder if I could get a delivery here again next month...then you'd HAVE to come back. Just a thought....

Glad the week of meds wasn't too bad. Loved the spin on your description of last week though - Michelle and Christin kicked your butt - but I won't tell anybody.

The Cape looks great! Enjoy it.

mich said...

Mark, I'm glad to get the update because I've been wondering how the drugs were going down this time. I'm glad to hear it hasn't been too bad. I'd rather you have problems with the mail and not the side effects. That tradeoff would be worth a FedEx run every time.

Rita said...

Thanks for filling us in, Mark. The cheering section gets cranky when there's no news.

Glad that all is going well and the fifth day is behind you.

Get on with the fun!

LaSue said...

Ahh, the perils of healthcare. But I must say, from an old chemo nurse standpoint, even with the clitches it is amazing that you do all of this outpatient across the country. We have come a long way baby....Just a suggestion, call your medical insurance and see if they can direct you to a lab that has a contract in the city you are staying. It might take some phone hassel, but it avoids waiting in a office or hospital. Maybe? Plus, please don't skip the first lab after you've taken the pills, that is mucho importante. Sorry, I've just got to be a nurse. Love you! Glad it is going well. Loved that picture of the Cape.

Rick said...

Glad to hear that the chemo went well - particularly after the struggles to get those damn pills! I'm wondering if, now that your pharma has Ronelle's address, we'll see you guys for a Wii tourney again next month!? (hope so). Practice up ... I hate to watch you get your ass kicked so badly:)


freda said...

I have had trouble with Caremark also, when I stayed at John's place I had them send my prescriptions there, so they sent them to my house, then when I returned home, they sent them to John, so call them and be sure that they don't send the next lot to Ronelle now that you have moved on. Glad the treatement wasn't too bad.