Monday, January 15, 2007

Crappy Weather



This is the wierdest winter on record. Can't understand where this odd, warm, crappy, soggy wet stuff came from, but it's really for the birds. Does anyone really prefer this? You're seeing a view of our favorite spot in the house, the window off of our kitchen looking out on the back yard. Usually we get a nice, white winter scene, but today is a soggy, muddy mess that only depresses, not inspires.

Sure am glad skiing isn't an option for me this year. It's been OK for driving to buffalo, but so little snow has fallen, and so little cold weather has been sustained, I don't think anyone in New York has really had a decent ski day all winter.

Sunday, January 14, 2007

My sweet ride



This is my sweet Scion XB, which about a year ago we covered with an alligator on all sides to celebrate and advertise the new DI press installed at All Ready. Since I've had cancer I've reliquished possession of the car to my Dad, who has been using it for deliveries and other company business, as by all rights it is the company car. But I miss my little scion and I've taken ownership of it again on weekends, and driving it is a hoot.
Kind of a boring weekend here in Vestal. The weather is sincerely BLAH. I think I would prefer 10 degree freezing-ness we are typically greeted with in January, as this not-warm-enough-to-sunbathe-but-just-cold-enough-to-be-rainy-and-sloppy weather is no fun. Though it has made commuting to Roswell Park quite a bit easier, I feel bad for the ski areas and anyone else who enjoys winter. I don't, however, imagine this is global warming. I bet the people out West in Colorado and the other snowbound Rocky Mountain regions have a pretty short temper with the Global Warming types, as they dig out their cars from the 10 or so odd feet of the white stuff that has fallen this year.
No appointments this week, so I've got all the time in the world to hang out in soggy, gray Vestal. Whoohoo! Fun times.

Friday, January 12, 2007



Some really cool people are doing a really cool thing for me tonight. A bunch of my old pipe dream friends are gathered at a club in NYC called Mad River Grill. Headed up by my former colleagues and friends, it sounds like just about every pipe dreamer I ever knew is hanging out for my benefit, at the benefit.
All I can say is thanks everyone. I really wish I could be there.
My cat Star who is sitting next to me wants me to tell you that, really, I'm doing fine and well on the way to being on the mend.
Thanks again folks. It's really wierd to think about all of you there together just to support little old me. I talked to a few of you tonight and it reminded me how lucky I am to have such good friends. It's been too long. This summer, let's get together and drink some beers and toast to our health and the good times we've had. Aw, shucks I'm getting sappy, but I'm tired and I'll bet a few of you won't mind.
--Matt
P.S. Soopa coopa did you show up?

Tuesday, January 09, 2007

I've had it.


I totally blew up at a nurse, a nurse practitioner and a "patient advocate" today.I'd just been held up at Roswell Park for hours past what I had expected. Again. One time too many.
There is a systemic problem with the outpatient infusion clinic at Roswell. They can't keep an appointment. Not your usual problem with not keeping appointments, mind you, but a gross, irresponsible inability to keep appointments. One can plan, on any given day, that if one's appointment is set for any time after about 9 AM, one can expect a minimum of a two-hour wait just to get seated in the clinic. Once seated, expect another hour to see a nurse practitioner. After that, perhaps 45 minutes more to get one's chemo. The wait gets worse as the day goes on.
These delays are hurting patients, the staff and the hospital's reputation:
Patient attiude: It is the talk of the waiting rooms that appointments are so egregiously not kept. Usually one will hear about the hour and a half wait, the two hour wait, the three hour wait, etc. No one bothers to apologize for the problem, either. The wait is so bad and so long that the hospital has put a band-aid on the problem. They use pagers, the kind of light-and-vibrate things they give you at Outback Steakhouse or Olive Garden when there is a long wait. In the case of Roswell, the reservations have been made weeks or months in advance. Is this situation really right?
Patient Care The long delay means, even if a patient lives in Buffalo, he is tired and annoyed by the time he finally gets his chemo. If the patient is from afar, it may be the wait is on top of a long drive in starting with the wee hours. This frustration is taken out on the nurses, who are just doing their best within the system. Still, mistakes are inevitable. Two weeks in a row, I had to demand a chemo drug that was odmitted. For several weeks, an order was written requiring observation after this Erwinia. Today, for some reason, someone noticed and the order was enforced. Not a problem if prompt attention had been paid. But it was the end of a long series of disappointments, more waiting, and more disappointments. My appointment was at 10:00. I was seated at 10:45, which is actually pretty early. I didn't get my chemo, a stupid, simple shot of Erwinia( which, granted is not a routine drug, but I AM the only person in the hospital who gets it, so it shouldn't have been hard to find.) until 12:30. As the patient advocate (basically a customer liason) said to me, "You just seem like you've had it." And she was about right. What would have happened who didn't know everything he needed to get that day, before he showed up?
Follow the money: Hospitals don't seem to like to talk about money. But I wonder if Roswell Park knows how much money they are losing with their inefficiency, especially considering the chemo clinic.
It seems to me a basic flaw exists in the attention paid to certain periods of time. More effort is spent focusing on the time chemotherapy takes. But the time chemotherapy takes is not up for change. There's only so much stuff one can get into his body in an hour. Some drugs require observation, for a specific period of time. It is not appropriate to fight the time medical procedures take, and I think medical procedures are not the reason things are delayed. I think the delays boil down to 1) a lack of a manager or expediter to move things along when they need to be moved along, and b) a belief that once a patient is seated, the pressure is off.
My contention is that once a patient is seated, the pressure is on! It oughta be showtime. Fifteen minutes shouldn't go by between the time a person is seated and the time chemo starts flowing through their viens. A half hour would be great. But what I don't think they realize is the time people wait in chairs, inside the chemo clinic, is the time the WHOLE clinic is delayed.
One thing the patient advocate, who I spoke with at length while I was cooling my heels in the clinic for two hours today, requested I make some sugesstions. Here they are:
A. Treat chair time like gold. This time in the chair is the ONLY hope the clinic has of reaching a more on-time treatment rate, or increasing its throughput. We can't change chemo time, so everyone's got to figure a way to hustle. Patients should spend as little time in the chair when not getting chemo as possible.
2 Find alternatives to the chair. In other clinics, patients are returned to the lobby after an evaluation until a dr./ NP/ exam room is ready. Appointments are rarely late in other clinics, just chemo. So send us out of the chemo if things aren't ready! If observation or post counts are needed, don't keep us in the chair if another patient is waiting. There is very comfortable Stickley furniture in the lobby, and I am sure we could wait the proper amount of time then. The hours people would normally wait in the clinc chair would be spent in the less-scarce lobby seating, freeing up more space for more patients and enabling everyone to do the job accurately and efficiently.
3.Invest in any technology that will decrease labor and increase accuracy and speed of care. Wilson Hospital in Johnson City, a small generalist hospital, has these neat scanner guns. The nurse scans the order, scans the drug, scans the patients' wristband. Any drug, chemo or otherwise, is a 1-minute affair to confirm.
In the chemo clinic, one's nurse gets all the chemo, sets it down. Then the nurse has to go find another nurse. An odd ritual ensues, requiring basic ID information from me and having both nurses sign off on the orders and chemo confirming both are correct. So now we have two nurses, two clocks ticking, two sets of labor hours charged for a procedure that allready takes two or three times what it might take if a modern scanner system were in place. I don't know, but this seems like it could save a lot of time over 50 or 100 patients in a day.

That is about all, but realize why I am frustrated mostly is I entered this whole thing with only the best things to say about Roswell. And frankly, my care has turned out just great. But after so many days like today, there is just so much you can take. I had my fill today, and hence the problem that has probably earned me quite the reputation.
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PS: Becky: I'd like to email you back but the silly blogger program doesn't show your email. GRR.
Dustin: I miss Dustinland. And thanks for spreading the word about my blog.

Monday, January 01, 2007

Always ask for the good drugs


I am feeling much better in the last two days thanks to new drugs prescribed and acquired over the weekend.
I had been feeling super-crappy and hardly sleeping all week because of the stupid pain meds and flared up tongue sores and swollen tongue that had beset me recently after starting the Erwinia. The Oxycodon I was taking made me really irritable and edgy, and also very hyper. On Friday I ased Kelly Reese, a nurse practitioner, to prescribe something else for the pain. Remember: I can't take normal analgesics, as acetominophen and ibuprofen will hide a fever. Kelly prescribed Dialudid, a narcotic pain med with Hyrdromorphone as the active incredient. Meanwhile, the large shipment of gelclair was waiting for me at the clinic, and I started using it immediately.
The Dialudid prescription was a bit difficult to fill. I get the impression it's not prescribed all that often in Binghamton. Not that this should surprise anyone that I would need something a little bit out fo the ordinary, Friday night it wasn't available at CVS, and I just missed the Target Pharmacy closing at 9:00. Saturday morning I went back to target, and they didn't carry it, AND WOULDN"T BE ABLE TO GET IT UNTIL TUESDAY. I --calmly as possible -- explained just how badly I needed the drug. The nice pharmacist behind the counter offered to call Wegmans Pharmacy. Sure enough, wegmans had 90 2 MG pills of Dialudid!
I made A beeline for Wegmans and they filled my prescription. Within 1/2 hour of taking the first dose I felt like a normal person again. The pain was totally gone and I had a normal attitude and no fuzziness or dowsiness, and certainly I wasn't hyper. Meanwhile I continued to use the Gelclair after every meal, and its effects are helping to heal my poor tongue. It's no longer swollen, the sores are less inflamed and I'm needing the pain meds a lot less often. At first I was taking 1 pill every four hours, but today i'm down to one pill at waking, and didn'tm take another until about 6 PM. Yay for effective drugs!
Appointment for tomorrow at Roswell Park to get more Erwinia, and I'll probably need some platelets. We plan to show up early so we have half a chance of getting home tuesday night at a reasonable hour.