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.
Wednesday, July 2, 2008
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.
Monday, June 30, 2008
Day Six
Jamie and I set out at 10:30A for a 4:30P Proton appointment, on what usually is about a three and half hour ride form Port Washington, NY to Boston, MA. What do they say “best laid plans”? Instead it turned out be a five and half hour ride, we got into Boston at about 4P. It wasn't like this last week, maybe it was because of the holiday coming up, but it seemed like all people were on the road at the same time, heading to places North. By the time we unloaded our stuff and dropped off the car at the garage it was about 4:15P…but this way okay. Just as I was starting to wonder if I would make my appointment on time after leaving what I thought was a comfortable 6 hours between leaving New York and my appointment in Boston...I got a call. My 4:30P Proton session needed to be moved; I was instead to go to regular radiation in another building at 7P. See how everything just works out? LOL! And I was worried about the mask.
Turns out that the Proton machine was down today (this happens, I’m told). The calibration on the machine is so precise that should it become even slightly off, they shut down the machine for repair and reschedule all Proton patients to the conventional radiation location. Hard to complain about this, precision is everything when it comes to radiation.
Jamie and I shopped at Whole Foods, and then went to my 7P appointment, which became more like 7:30P, because my chart hadn’t been sent over yet. The chart arrived. They did their usual “hold still”, and we were out of there in no time.
My thoughts…the machinery may be precise, but the scheduling is not. Quite the day. Time to sleep.
Turns out that the Proton machine was down today (this happens, I’m told). The calibration on the machine is so precise that should it become even slightly off, they shut down the machine for repair and reschedule all Proton patients to the conventional radiation location. Hard to complain about this, precision is everything when it comes to radiation.
Jamie and I shopped at Whole Foods, and then went to my 7P appointment, which became more like 7:30P, because my chart hadn’t been sent over yet. The chart arrived. They did their usual “hold still”, and we were out of there in no time.
My thoughts…the machinery may be precise, but the scheduling is not. Quite the day. Time to sleep.
The Weekend
What can I say…I was really glad to get home, and then it was Sunday.
I felt strong enough to go to my 8A yoga class on Saturday...very happy about that. We created a healing circle, and then my yogamates asked me how I was doing. I said that I was feeling okay and that I had just completed my first week of radiation. The group clapped and congratulated me as if I had just completed something quite enormous...like I had completed a Marathon, or completed my Masters degree, or maybe completed my first week of sobriety. I felt a bit shy about receiving this attention for completing a week of radiation. I gathered up my yoga things, and said goodbye, and as I thought more about this attention, I thought this is worth applauding, not because I did all that much this week, but because I was now one week closer to being at the end of my own Marathon.
On Sunday it's time to pack up again, and get on the road. Monday is Rachel’s first day at Day Camp, she's really excited.. and I’m glad I can see her off on the bus before she goes. Jon stays behind this week and works, Jamie comes with me...and she's really excited. Just kidding. This will be a short week, no radiation on Friday. It’s everyone’s holiday weekend, even Proton Center. We’ll be home on Thursday afternoon, provided traffic is not insane, if it is…we’ll be home Thursday night. Thinking about the mask…obsessing about the mask. Feel okay, felt better, felt worse. I think I mostly feel tired.
I felt strong enough to go to my 8A yoga class on Saturday...very happy about that. We created a healing circle, and then my yogamates asked me how I was doing. I said that I was feeling okay and that I had just completed my first week of radiation. The group clapped and congratulated me as if I had just completed something quite enormous...like I had completed a Marathon, or completed my Masters degree, or maybe completed my first week of sobriety. I felt a bit shy about receiving this attention for completing a week of radiation. I gathered up my yoga things, and said goodbye, and as I thought more about this attention, I thought this is worth applauding, not because I did all that much this week, but because I was now one week closer to being at the end of my own Marathon.
On Sunday it's time to pack up again, and get on the road. Monday is Rachel’s first day at Day Camp, she's really excited.. and I’m glad I can see her off on the bus before she goes. Jon stays behind this week and works, Jamie comes with me...and she's really excited. Just kidding. This will be a short week, no radiation on Friday. It’s everyone’s holiday weekend, even Proton Center. We’ll be home on Thursday afternoon, provided traffic is not insane, if it is…we’ll be home Thursday night. Thinking about the mask…obsessing about the mask. Feel okay, felt better, felt worse. I think I mostly feel tired.
Day Five
Day Five
10:15A on Friday was my fifth treatment, but only my second one at the Proton Center. It seemed like I was just there. I was, I had been there at 5P yesterday. We arrived on time but had to wait about a half hour before I was able to slip into the mask (it’s too early for me to start disliking this mask, but I do…got to work on that). Can this treatment really be only 20 minutes? It seems twice that long while I’m suspending in a space with no real light, no movement, only an occasional chime from the machine, or a beep from the closing door. Jon suggests afterward that we put together a CD for me to listen to during treatment, and make it as close to the length of the treatment as we can, that way I would have a sense of how much time had passed…and more importantly…how much more time was left to go. I think this is a really great idea! I’ll have to work on it this weekend when I’m home. The session ended, we waited to speak to my doctor (this will be an every Friday event). He asked me how I was feeling, to which I responded “tired and queasy”, and he said “that’s good, that’s how we know it’s working”. He could not know how funny this was, but the last time someone said that to me, I was pregnant with Jamie. My obstetrician asked me how I was feeling, I told her “sick to my stomach…all the time” What did she say? “I like to hear that my pregnant mothers are nauseous, that means that everything is going well”. She was right...everything did turn out well. Definitely seems like nausea is friend, not foe…I will try and keep this mind.
Jon and I headed back to the apartment; we left some of our bits and pieces behind, so less to lug back and forth. We hit the road. After about 90 miles we decided to stop at a roadside diner in Connecticut called Shady Glen…very good burgers, and a great chocolate ice cream soda with mocha chip ice cream. If you’re ever in Manchester, Ct., and looking for some comforting, comfort food…I highly recommend the place.
As so it goes, one week down, six more to go.
10:15A on Friday was my fifth treatment, but only my second one at the Proton Center. It seemed like I was just there. I was, I had been there at 5P yesterday. We arrived on time but had to wait about a half hour before I was able to slip into the mask (it’s too early for me to start disliking this mask, but I do…got to work on that). Can this treatment really be only 20 minutes? It seems twice that long while I’m suspending in a space with no real light, no movement, only an occasional chime from the machine, or a beep from the closing door. Jon suggests afterward that we put together a CD for me to listen to during treatment, and make it as close to the length of the treatment as we can, that way I would have a sense of how much time had passed…and more importantly…how much more time was left to go. I think this is a really great idea! I’ll have to work on it this weekend when I’m home. The session ended, we waited to speak to my doctor (this will be an every Friday event). He asked me how I was feeling, to which I responded “tired and queasy”, and he said “that’s good, that’s how we know it’s working”. He could not know how funny this was, but the last time someone said that to me, I was pregnant with Jamie. My obstetrician asked me how I was feeling, I told her “sick to my stomach…all the time” What did she say? “I like to hear that my pregnant mothers are nauseous, that means that everything is going well”. She was right...everything did turn out well. Definitely seems like nausea is friend, not foe…I will try and keep this mind.
Jon and I headed back to the apartment; we left some of our bits and pieces behind, so less to lug back and forth. We hit the road. After about 90 miles we decided to stop at a roadside diner in Connecticut called Shady Glen…very good burgers, and a great chocolate ice cream soda with mocha chip ice cream. If you’re ever in Manchester, Ct., and looking for some comforting, comfort food…I highly recommend the place.
As so it goes, one week down, six more to go.
Thursday, June 26, 2008
Day Four...First Proton Therapy Treatment
Proton Therapy is serious business; in comparison to the Conventional Radiation experience it seems quite formidable.
The Proton Radiation Room is huge, the equipment is state of the art…it looks like something from “2001-A Space Odyssey”. The table I sit on moves in and out of a large cyclotron that delivers a pin-pointed beam that starts some three floors away. There is music playing…whatever you want; there’s no music in conventional radiation, not even if you wanted it. I lie on a table, no one matches my tattoos, no one seems to even care that I have them. The mask that I was fitted for a couple of weeks ago is strapped to my face, a la Hannibal Lecter. It is tight, practically suctioned to my face. Small glitch though, somehow even though this mask was made for my face, something has changed, my nose bumps out where the mask bumps in…adjustments have to be made. No way would I be able to stand twenty minutes a day with this on my face, and have it boring into my bumpy nose. They fix it. It’s better, but some serious visualization has to happen here,…I’m thinking facial again. The mask prevents me from seeing anything, my eyes can’t open, my mouth can't open…I am strapped. I am told through a speaker that the treatment will start. I'm asked if I’m okay?; funny though because I couldn't speak even if I wanted to…I give a thumbs up, which they can see on one of the many cameras where they are seated…in the other room. In case of emergency, I have a button to push. I wonder as I’m strapped into my mask not able to be anything but still…”what would be emergency enough to push this button and grind this process to a halt?” There is a low sort of long beep sound. I lie here wondering, visualizing, I think about what I’m going to be doing later,…I think about this beam and what it is doing. The beam stops, someone says “Okay, that’s the end of the treatment for today, see you tomorrow”. I think to myself “this word treatment seems so weird “; before this process, treatments brought images of hot stones, massages and facials. Guess one person’s mud is another person’s radiation.
The Proton Radiation Room is huge, the equipment is state of the art…it looks like something from “2001-A Space Odyssey”. The table I sit on moves in and out of a large cyclotron that delivers a pin-pointed beam that starts some three floors away. There is music playing…whatever you want; there’s no music in conventional radiation, not even if you wanted it. I lie on a table, no one matches my tattoos, no one seems to even care that I have them. The mask that I was fitted for a couple of weeks ago is strapped to my face, a la Hannibal Lecter. It is tight, practically suctioned to my face. Small glitch though, somehow even though this mask was made for my face, something has changed, my nose bumps out where the mask bumps in…adjustments have to be made. No way would I be able to stand twenty minutes a day with this on my face, and have it boring into my bumpy nose. They fix it. It’s better, but some serious visualization has to happen here,…I’m thinking facial again. The mask prevents me from seeing anything, my eyes can’t open, my mouth can't open…I am strapped. I am told through a speaker that the treatment will start. I'm asked if I’m okay?; funny though because I couldn't speak even if I wanted to…I give a thumbs up, which they can see on one of the many cameras where they are seated…in the other room. In case of emergency, I have a button to push. I wonder as I’m strapped into my mask not able to be anything but still…”what would be emergency enough to push this button and grind this process to a halt?” There is a low sort of long beep sound. I lie here wondering, visualizing, I think about what I’m going to be doing later,…I think about this beam and what it is doing. The beam stops, someone says “Okay, that’s the end of the treatment for today, see you tomorrow”. I think to myself “this word treatment seems so weird “; before this process, treatments brought images of hot stones, massages and facials. Guess one person’s mud is another person’s radiation.
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