Tuesday, January 5, 2010
Back in Another Blue Room at Hotel Englewood
Returning to a community hospital for a week is like coming back to a cheap, somewhat sadistic, motel. I arrived yesterday for the first of four rounds of chemotherapy. I'm in a shared room, although my roommate left yesterday and I'm hoping I can avoid another "guest" in my new blue room. (It's not that I don't like people. I just don't like sick people in my space when I'm already sick and cranky.)
The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.
Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.
Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.
Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.
I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.
Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.
Kathy
CANcer + HEALth = CAN HEAL
The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.
Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.
Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.
Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.
I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.
Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.
Kathy
CANcer + HEALth = CAN HEAL
Labels:
AML,
Francis Forte,
Treatment
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Kathy, you are amazing. I am glad that you still have a sense of humor that you are able to share with the rest of us. I will continue to mention your name in my prayers. Continue to be blessed. Eleanor
ReplyDeleteLove you Kathy, you're in my thoughts and prayers.
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