Don't know which is more tiring,...Mondays, when I travel and radiate on the same day, or Tuesdays,...the day after I travel and radiate. There is something about the day after Mondays, that feels like a hangover...sort of a delayed reaction to all the schlepping which is really draining. Tuesdays are starting to feel like a day to just slog through...I really need to take it easy on Tuesdays.
My friend Joe came today, he is the perfect friend for today. He was totally fine with not doing much but eat, talk, and go with me to radiation. Just perfect!
He arrived about 10:45A. Radiation was supposed to be at 2:30P...but I got the call. "The machine is down, would I be able to go to Photon radiation at 3P?" And so I do. Joe and I get there at 3P, we wait until 3:45P, I'm out at around 4:30P. Afterward, I feel that Photon feeling, flush, dizzy, and tired. Joe and I head back to the apartment, we order pizza, we eat in, and afterward we go for a walk. To do what else? To get ice cream. What's a day without ice cream? We walk to Ben & Jerry's...for what else? Chocolate Therapy. It's the "have to have it" flavor of now. The cure to cure all ills. It's a nice walk, the light is low but not dark, the temperature is not the 90 degrees of the day, but instead a cool 80...with a slight breeze. We walk through Boston Public Garden, and see the swan boats, and the fountains and the Paul Revere sculpture, and it's the perfect end to the day.
Joe leaves about 9:30...and I think tomorrow is Wednesday already, two days from Friday, and it's not Monday travel day, or Tuesday...the day after travel day. The week is looking good.
Wednesday, July 9, 2008
Tuesday, July 8, 2008
Day Ten
I don't know which is harder...having radiation or traveling to Boston on Mondays and then having radiation. After a long weekend, and just starting to feel a bit less worn out, it's time to hit the road again. This time I'm not driving, I'm training. Jon drives me to the Amtrak station in New Rochelle so that I don't have to hassle with the Long Island Rail Road that I would need to take to get to the Amtrak train...it seems simpler to just board at New Rochelle; it's about 45 minutes from our house in Port Washington. We hit a predictable amount of traffic, but get there well in time for me to use the ticket kiosk (never used this before for Amtrak...in fact haven't taken Amtrak in 30 years), and meet the train. It's seems a bit ridiculous, but I'm sort of nervous. I'm used to driving (I've been making the NY/Boston trip that way for many years), I feel like I'm traveling with the flu. I'm headachey, nauseous, tired,...and this makes me feel vulnerable...so I'm nervous. The train comes, I say good-bye to Jon, and feel like I'm going off to war.
I'm boarding with two bags. One bag contains my laptop, and it's cables, my Ipod and it's cable, my phone, it's charger, my digital camera, and my video camera, and it's cables, some speakers, a couple DVD's, and I'm guessing it weighs about 25 pounds. The other bag is clothes and some sheets, and maybe that weighs about 5 pounds....and believe it or not, I'm traveling light, much of what I need I leave behind in Boston.
I make my way onto the train from the last car; I'm using my Long Island Rail Road experience here, and figure that the last car would be the least crowded. Not true. No seats in this car, and this may be a special car...a car you'd have to pay more for, it's a "Quiet Car"...no cell phones, and the seats seem plush. I walk to the next car. No seats., the next car, no seats. Even though I haven't taken the train for thirty years, (since I was in college), not much seems to have changed with regard to availability...nor the cattle car atmosphere in the "non-special" seat area. I end up walking the entire length of the train with my 30 lbs worth of bags, until I come to a seat in the first car. This also seems to be a "special car",...there are plush seats. The car before this one, had plenty of non-plush seats, but it also had plenty of hot air...no air-conditioning. I thought for a moment about sweating it out here, but after trudging through 7 cars with 30 lbs of bags, this decision was easy. No way!
I collapsed into my seat in the last car, feeling sick and tired, when not too shortly after, the ticket taker came to claim my ticket. Immediately he saw me as a ticket offender. "I'm sorry Ma'am, but this is reserved seating, and you can't sit here...there's plenty of seats in the next car back". I ask, 'Is that the car with plenty of seats, and no air conditioning? Because other than that, I couldn't find any seats, and I've walked the entire length of the train". He rolled his eyes, like I was just the biggest pain in the ass, punched my ticket, and moved on...and here I stayed until it was time for me to get off and meet my friend Barry at the New London station...I stayed in the plush seat section, for the non-plush seat price...but I really had to work for it. I think I prefer to drive.
My friend Barry lives in Florida, but had a wedding in New London. He offered to pick me up at the train station and drive me to Boston (about two hours away), which was great. The train stopped in New London and he was there. I will say this about the train, the route is beautiful, lots of water, and great scenery.
Once we got to Boston I was hugely exhausted, we ate lunch, he escorted me to my Proton session later in the day, we shopped for food for me for the week. We talked, it was great to see him, he left, and I went to sleep. So tiring. What is more tiring than radiation? Traveling and radiation in the same day.
I'm boarding with two bags. One bag contains my laptop, and it's cables, my Ipod and it's cable, my phone, it's charger, my digital camera, and my video camera, and it's cables, some speakers, a couple DVD's, and I'm guessing it weighs about 25 pounds. The other bag is clothes and some sheets, and maybe that weighs about 5 pounds....and believe it or not, I'm traveling light, much of what I need I leave behind in Boston.
I make my way onto the train from the last car; I'm using my Long Island Rail Road experience here, and figure that the last car would be the least crowded. Not true. No seats in this car, and this may be a special car...a car you'd have to pay more for, it's a "Quiet Car"...no cell phones, and the seats seem plush. I walk to the next car. No seats., the next car, no seats. Even though I haven't taken the train for thirty years, (since I was in college), not much seems to have changed with regard to availability...nor the cattle car atmosphere in the "non-special" seat area. I end up walking the entire length of the train with my 30 lbs worth of bags, until I come to a seat in the first car. This also seems to be a "special car",...there are plush seats. The car before this one, had plenty of non-plush seats, but it also had plenty of hot air...no air-conditioning. I thought for a moment about sweating it out here, but after trudging through 7 cars with 30 lbs of bags, this decision was easy. No way!
I collapsed into my seat in the last car, feeling sick and tired, when not too shortly after, the ticket taker came to claim my ticket. Immediately he saw me as a ticket offender. "I'm sorry Ma'am, but this is reserved seating, and you can't sit here...there's plenty of seats in the next car back". I ask, 'Is that the car with plenty of seats, and no air conditioning? Because other than that, I couldn't find any seats, and I've walked the entire length of the train". He rolled his eyes, like I was just the biggest pain in the ass, punched my ticket, and moved on...and here I stayed until it was time for me to get off and meet my friend Barry at the New London station...I stayed in the plush seat section, for the non-plush seat price...but I really had to work for it. I think I prefer to drive.
My friend Barry lives in Florida, but had a wedding in New London. He offered to pick me up at the train station and drive me to Boston (about two hours away), which was great. The train stopped in New London and he was there. I will say this about the train, the route is beautiful, lots of water, and great scenery.
Once we got to Boston I was hugely exhausted, we ate lunch, he escorted me to my Proton session later in the day, we shopped for food for me for the week. We talked, it was great to see him, he left, and I went to sleep. So tiring. What is more tiring than radiation? Traveling and radiation in the same day.
Sunday, July 6, 2008
The Second Weekend
The weekend seemed longer than three days, don't know why, but I'm glad for this time warp. I felt really sick on Friday, better each day that went by...Sunday felt at my bestest...by evening the anxiety sets in about the upcoming week. Neither Jon, nor Jamie will be with me this week, instead I will visited by several friends who will accompany me to my usual haunts. I'm trying to focus on smooth sailing, hassle-free thoughts. May the force be with me.
Day Nine...I just want to get out of town
It's been a long week for a short week. The heat, the scheduling changes, the crowded waiting room, because of the scheduling changes, the traffic coming up to Boston, all the people that are in Boston for some genuine Independence Day fun,...I just feel worn out, and I'm ready to go home.
Jamie and I get to Proton Center at 8:30A, my scheduled time, but do you think they're on time? Nope, that's right, they're behind...but this is relative...they take me at 9:00A. Not so bad...I guess. The mask goes on with ease, I count down four Classic Rock songs (Proton Center plays a Classic Rock station on the radio during treatments), I've figured out how to pace myself according to how many songs have played. Four is the number...this is quite helpful. I'm done. Jamie and I head back to the apartment. I take about 45 minutes to rest before we have to begin to hump our stuff down the stairs and go pick up the car at the garage, which is three blocks away. This rest time is so not enough...but I just want to get out of town.
I go to the garage with one knapsack, and leave Jamie with the key and the rest of the bags (about 4). The plan is that while I am walking over to validate parking and get the car, she will bring the bags downstairs and wait in the ground floor vestibule.
I arrive at the garage, believing that like the couple of times preceding this one, that it will go like "one, two, three pick up sticks". Not today though, today they tell me they can't validate because I'm not in the system, I'm not a patient, and that instead of the $24 I'm prepared to paid, I must pay $120 or I can't get my car out of the lot. "This is absurd" I tell the overly officious parking validator. I've parked here before, I've presented you with the Proton Therapy card that I always present to your co-validators, I've given you my Patient Number..."I'm a patient", I rant. She continues to tell me that I'm not...like I'm pretending to be, so that I can rip the hospital off to the tune of 100 bucks. She becomes exasperated and calls a Customer Service Person, who will take ten minutes to show up...I proceed to melt...I've just been radiated, and it's something like 100 degrees at the parking garage. Finally, the Customer Service God shows up, calls Proton Center, and deigns to validate my parking...but not before he tells me "that from now on, I will need to present a note from my doctor". I just want to get out of town.
Jamie called almost exactly after this parking fiasco had been settled...she was starting to wonder if on the way over to the garage I had passed out on the street. I like the concern, it had been about 40 minutes...in my mind I'm thinking if I had actually passed out, 40 minutes would have been a lot of time to have passed before she called...but enough thought. I just want to get out town. I tell her I'm on my way and will be at the apartment in about five minutes...she's been doing some melting of her own in the hot apartment vestibule. She just wants to get out of town.
We hit the road about 11:30A, on the way we stop at a Ben & Jerry's at one of the highway rest stops, and discovery a flavor we've never before experienced...Chocolate Therapy...just what we both needed. The chocolatiest of chocolate ice creams either of us has ever had...and that's saying a lot. We do hit traffic, but it was not as bad as anticipated. We got home around 4P. So glad week two is over. I look forward to having three days off.
Jamie and I get to Proton Center at 8:30A, my scheduled time, but do you think they're on time? Nope, that's right, they're behind...but this is relative...they take me at 9:00A. Not so bad...I guess. The mask goes on with ease, I count down four Classic Rock songs (Proton Center plays a Classic Rock station on the radio during treatments), I've figured out how to pace myself according to how many songs have played. Four is the number...this is quite helpful. I'm done. Jamie and I head back to the apartment. I take about 45 minutes to rest before we have to begin to hump our stuff down the stairs and go pick up the car at the garage, which is three blocks away. This rest time is so not enough...but I just want to get out of town.
I go to the garage with one knapsack, and leave Jamie with the key and the rest of the bags (about 4). The plan is that while I am walking over to validate parking and get the car, she will bring the bags downstairs and wait in the ground floor vestibule.
I arrive at the garage, believing that like the couple of times preceding this one, that it will go like "one, two, three pick up sticks". Not today though, today they tell me they can't validate because I'm not in the system, I'm not a patient, and that instead of the $24 I'm prepared to paid, I must pay $120 or I can't get my car out of the lot. "This is absurd" I tell the overly officious parking validator. I've parked here before, I've presented you with the Proton Therapy card that I always present to your co-validators, I've given you my Patient Number..."I'm a patient", I rant. She continues to tell me that I'm not...like I'm pretending to be, so that I can rip the hospital off to the tune of 100 bucks. She becomes exasperated and calls a Customer Service Person, who will take ten minutes to show up...I proceed to melt...I've just been radiated, and it's something like 100 degrees at the parking garage. Finally, the Customer Service God shows up, calls Proton Center, and deigns to validate my parking...but not before he tells me "that from now on, I will need to present a note from my doctor". I just want to get out of town.
Jamie called almost exactly after this parking fiasco had been settled...she was starting to wonder if on the way over to the garage I had passed out on the street. I like the concern, it had been about 40 minutes...in my mind I'm thinking if I had actually passed out, 40 minutes would have been a lot of time to have passed before she called...but enough thought. I just want to get out town. I tell her I'm on my way and will be at the apartment in about five minutes...she's been doing some melting of her own in the hot apartment vestibule. She just wants to get out of town.
We hit the road about 11:30A, on the way we stop at a Ben & Jerry's at one of the highway rest stops, and discovery a flavor we've never before experienced...Chocolate Therapy...just what we both needed. The chocolatiest of chocolate ice creams either of us has ever had...and that's saying a lot. We do hit traffic, but it was not as bad as anticipated. We got home around 4P. So glad week two is over. I look forward to having three days off.
Wednesday, July 2, 2008
Day Eight
Don't know what it is about today, but I felt really crappy. Don't know if I did too much yesterday, or that it's the cumulative effect of the radiation; but starting last night I was feeling bad and sad (they often go together). My tongue felt weird, my head hurt, and I felt like I had a fever. I woke up feeling not as bad, took it easy (okay maybe not that easy, not like lay in bed all day easy), but didn't do as much as I might normally do. Jamie and I went out and walked around a bit, and as we walked a huge thunderstorm moved in...we ducked into a store thinking it would be gone as soon as it arrived, and we'd be able to walk back to the apartment. We waited, and waited...like a half hour. Nope, it wasn't leaving anytime soon. She asked if I had a number for a cab company, I didn't. I said maybe a cab will pass by (as we looked hopefully out the window). It's was pouring, what were the chances of getting an empty cab, much less flagging it down while standing inside the store? And just then, I'm not kidding you, a cab stopped in front of the store, and two people got out. I ran out and told the now departing customers to hold it for us...and there you go...we called a cab and it came...as it turns out, we didn't even have to dial a number. We pulled it in from the universe.
My proton session was set for 4:20P today, but that didn't matter, I wasn't taken until almost 6P...busy place...no shortage of customers. I am so not a person to stand on line for things. A new Harry Potter movie or book, I'm the one who will see the movie a few weeks later when the crowd thins out, or buy the book after a few weeks, or even wait and borrow it from the library. There is no restaurant that I would even consider standing on line for an hour and half to be seated...none. But here at Proton Center, I wait,...I wait as long as I have to to be seated. While I wait, I learn patience...you know, that virtue I don't have.
Time to hit the sack, my doctor says I need more rest, guess I thought that was advice for the other patients, but it's not. Nighty, night.
My proton session was set for 4:20P today, but that didn't matter, I wasn't taken until almost 6P...busy place...no shortage of customers. I am so not a person to stand on line for things. A new Harry Potter movie or book, I'm the one who will see the movie a few weeks later when the crowd thins out, or buy the book after a few weeks, or even wait and borrow it from the library. There is no restaurant that I would even consider standing on line for an hour and half to be seated...none. But here at Proton Center, I wait,...I wait as long as I have to to be seated. While I wait, I learn patience...you know, that virtue I don't have.
Time to hit the sack, my doctor says I need more rest, guess I thought that was advice for the other patients, but it's not. Nighty, night.
Tuesday, July 1, 2008
Day Seven
Proton Center is down again. At Noon I received a call asking me if I could reschedule my 4:30P Proton session to a 3:30P Photon (conventional) radiation treatment. Is this really a question, or more like a redirection with a please? They say jump, I jump; it's the whole reason I'm here, I'll do whatever I need to do.
Jamie and I decide to visit the New England Aquarium (just a short walk from where we’re staying)…everything is so close in Boston...love that. It was fun and really relaxing to just watch the penguins for a couple of hours. The walk back was way more than I was up for…the temperature was supposed to be 84 degrees, but I don’t know how that was possible since it felt like 100 degrees. I forgot what Boston summers can feel like. We got back to the apartment around 2:45P. My cell phone rings, “Heidi, the Proton machine is back up, can you come, to Proton Center at 4:50P? They say jump, I jump. I jumped in at 4:50P, but didn't jump out until 6P…they were backed up because the machine had been out of commission for a day and a half…and so this may be the way of things.
Jamie and I decide to visit the New England Aquarium (just a short walk from where we’re staying)…everything is so close in Boston...love that. It was fun and really relaxing to just watch the penguins for a couple of hours. The walk back was way more than I was up for…the temperature was supposed to be 84 degrees, but I don’t know how that was possible since it felt like 100 degrees. I forgot what Boston summers can feel like. We got back to the apartment around 2:45P. My cell phone rings, “Heidi, the Proton machine is back up, can you come, to Proton Center at 4:50P? They say jump, I jump. I jumped in at 4:50P, but didn't jump out until 6P…they were backed up because the machine had been out of commission for a day and a half…and so this may be the way of things.
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