Today was my worst day yet. Today was the first day since I've started Proton Therapy that I found myself wondering if I could make the walk to the hospital. It's three/four blocks away and yet it may as well be a mile. Three/four weeks ago, three/four blocks was nothing. The only thought that rallies my spirit is that Mr. Dubenschmeimer must be feeling as lousy as I'm feeling.
My friend Eve and her daughter arrive around 12:30P, we go to lunch,...I wish I hadn't eaten. Afterward, she drives me around a bit to see some scenic spots, I really wish I hadn't eaten. She dropped me off at the apartment to rest while she parked her car. By the time she got back it was almost time to go to my 3:50P Proton session. We all walked there, and I felt every step of that walk. We were kept waiting at Proton for almost an hour. I'm thinking they really should provide beds for waiting patients. They call my name, they do their thing, I do mine. It's 5P, and I'm done...so done.
Fortunately, (Eve being the forward thinker she is), has parked her car very close to the Proton Center, so all I have to do is sit on a bench until she pulls the car around...no walking. So glad! She drops me off at the apartment and I slowly make my way upstairs.
I plug into some music and try and transport myself away from the day, but very often this thought keeps popping into my head..."where am I going to find the energy to make it through the rest of these days?"
Thursday, July 17, 2008
Wednesday, July 16, 2008
Day Sixteen...A Day to Drink
I’m thinking as hard as Mondays are, Tuesdays are the hardest days. Even though Monday is a travel and radiate day, I’m coming off Sunday, which is a day of resting, and relaxing in my own home, which does make it a bit easier. On Tuesdays I feel sick because I’m lonely, and lonely because I’m sick. I have friends that are with me, and who visit…it’s not about that, it’s about not feeling like I have the energy to do for myself. On this Tuesday, I feel like a sick person , not like a person who is sick…but a patient…this is feeling I know very well, and it puts me in a funk.. I have three more weeks of Proton after this week, but only three more Tuesdays. Yayy!
Proton is at 5:50P today, another late one…this is good, maybe they even plan it this way. When you’re this far into treatment, you need more time to rest. All I can think about since I got up in the morning is the Magical Slurpee. At around 3P, I decide to venture out to the 7-11…it’s about five blocks away. It’s hot, it’s sunny, but I feel good about being able to get myself out and about. I arrive, pay my $1.59 (so worth it), and almost immediately I start to feel the Slurpee's restorative powers. I enjoy the walk back while sucking on my Coke fluff. I mount the stairs to my apartment (I’m looking forward to lying down in air-conditioning), I put my key in the apartment door lock, and realize that the bottom knob lock is locked. Uh oh, it’s never been locked before (I purposely keep it unlocked), but somehow inadvertently the lock on the knob must have been turned. I try the top lock key in the knob and it doesn’t work. I don’t panic, but my mind starts to race with possible solutions. The Building Manager? I don’t have his number. My friend who usually lives in the apartment? She’s in LA, but may know something about the lock that can help me. A locksmith? Too soon for that? The old lady downstairs? “Yes”, I think “Why not her?" She seems to know everything, she must have a key or at least the Building Manager’s number”. As I trudge down the stairs to her apartment, I worry if she still may think I am a paper-stealing suspect. I knock on her door. She appears in a fuzzy pink bathrobe, but looking perky enough. I explain my key story to her. She asks me into her apartment and tells me that she was just about to pour herself a Gin and Tonic., “Would I like one?” “No thank you” I say. I think to myself it’s a little early for drinking ,… it’s 4:00 in the afternoon; but I also think that this convivial offer is one that she would make only to an innocent person, not a criminal. This seemingly casual, matter-of-fact way in which she offers this mid-afternoon drink may explain a couple of things about her behavior,... if maybe lets say she starts drinking earlier in the day and perhaps drinks until later in the evening….just a thought.
She offers to call the Building Manager for me, but qualifies this by saying he never picks up his phone. I’m wondering if he doesn’t pick up for everyone, or does he just not pick up for her? Doesn’t matter, it’s worth a try. She calls,...no answer and no way to leave a message. I call my friend who usually lives in the apartment. No answer, I leave a message. The old lady suggests that I try a credit card on the door. She even is willing to demonstrate on her own door, until she realizes that she doesn’t have the right door for this MacGyver technique.
After a few more minutes, and just short of calling a locksmith to help me, I decide to go up and try the door again…maybe there was something I could have done, but didn’t. I try one key, no luck. I try the second key. Bingo! The door opens. Can’t tell you the relief that pours over me. I must have tried the same wrong key twice the first time around. I yell downstairs to the old lady to let her know. I thank her for her help. Proton in an hour. I'm exhausted. I need another Slurpee!
Proton is at 5:50P today, another late one…this is good, maybe they even plan it this way. When you’re this far into treatment, you need more time to rest. All I can think about since I got up in the morning is the Magical Slurpee. At around 3P, I decide to venture out to the 7-11…it’s about five blocks away. It’s hot, it’s sunny, but I feel good about being able to get myself out and about. I arrive, pay my $1.59 (so worth it), and almost immediately I start to feel the Slurpee's restorative powers. I enjoy the walk back while sucking on my Coke fluff. I mount the stairs to my apartment (I’m looking forward to lying down in air-conditioning), I put my key in the apartment door lock, and realize that the bottom knob lock is locked. Uh oh, it’s never been locked before (I purposely keep it unlocked), but somehow inadvertently the lock on the knob must have been turned. I try the top lock key in the knob and it doesn’t work. I don’t panic, but my mind starts to race with possible solutions. The Building Manager? I don’t have his number. My friend who usually lives in the apartment? She’s in LA, but may know something about the lock that can help me. A locksmith? Too soon for that? The old lady downstairs? “Yes”, I think “Why not her?" She seems to know everything, she must have a key or at least the Building Manager’s number”. As I trudge down the stairs to her apartment, I worry if she still may think I am a paper-stealing suspect. I knock on her door. She appears in a fuzzy pink bathrobe, but looking perky enough. I explain my key story to her. She asks me into her apartment and tells me that she was just about to pour herself a Gin and Tonic., “Would I like one?” “No thank you” I say. I think to myself it’s a little early for drinking ,… it’s 4:00 in the afternoon; but I also think that this convivial offer is one that she would make only to an innocent person, not a criminal. This seemingly casual, matter-of-fact way in which she offers this mid-afternoon drink may explain a couple of things about her behavior,... if maybe lets say she starts drinking earlier in the day and perhaps drinks until later in the evening….just a thought.
She offers to call the Building Manager for me, but qualifies this by saying he never picks up his phone. I’m wondering if he doesn’t pick up for everyone, or does he just not pick up for her? Doesn’t matter, it’s worth a try. She calls,...no answer and no way to leave a message. I call my friend who usually lives in the apartment. No answer, I leave a message. The old lady suggests that I try a credit card on the door. She even is willing to demonstrate on her own door, until she realizes that she doesn’t have the right door for this MacGyver technique.
After a few more minutes, and just short of calling a locksmith to help me, I decide to go up and try the door again…maybe there was something I could have done, but didn’t. I try one key, no luck. I try the second key. Bingo! The door opens. Can’t tell you the relief that pours over me. I must have tried the same wrong key twice the first time around. I yell downstairs to the old lady to let her know. I thank her for her help. Proton in an hour. I'm exhausted. I need another Slurpee!
Tuesday, July 15, 2008
Day 15
Oh boy, it’s radiation/traveling Monday again. My friend Lauren has volunteered for service this morning. My appointment at Proton isn’t until 6:10P, that’s the latest its ever been, and I’m going to take advantage of this by deciding to leave home a bit later in the morning. Lauren and I leave at 11A. I’ve only known Lauren for a year or so, but she’s one of those friends you meet and feel as though you’ve met them way before you met them. We don’t know everything about each other, and the four hour ride up is a filled with lots of time to talk…which we do. Among many things that we learn about each other, is that we both need to make frequent trips to the Rest Area restroom. This is a relief (no pun intended). I’m mostly used to driving myself, so if I need to stop, I stop; but driving up with someone else…I know it may sound ridiculous, but I wasn’t sure what proper passenger etiquette would be indicated. I didn’t want to become a nuisance, figured I’d do whatever she decided to do. But no worries, we have the same needs.
We got to Boston about 4P, we shopped, Lauren carried. Afterward, Lauren unpacked and I rested. We talked some more, and then it was time for Number 15 treatment…only 20 more to go. Yikes! We go back to the apartment, Lauren and I say goodbye and she heads back to her hotel across the street…she’s driving home to Port Washington at 6A tomorrow. I think about eating, but I’m not hungry, could use a Coke Slurpee. Too tired. I collapse into bed. Oh boy, radiation Mondays always get me down.
We got to Boston about 4P, we shopped, Lauren carried. Afterward, Lauren unpacked and I rested. We talked some more, and then it was time for Number 15 treatment…only 20 more to go. Yikes! We go back to the apartment, Lauren and I say goodbye and she heads back to her hotel across the street…she’s driving home to Port Washington at 6A tomorrow. I think about eating, but I’m not hungry, could use a Coke Slurpee. Too tired. I collapse into bed. Oh boy, radiation Mondays always get me down.
Weekend Three...the Magical Slurpee!
I’m not a soda drinker. I never took the Pepsi Challenge,…I haven’t tapped into “The Real Thing”. I never got hooked on the high caloric, high caffeine, low nutritional value soda experience. I guess somewhere along the line I decided to grab that experience elsewhere.
When I got home this weekend, I was feeling the way I had all week, like I had been on the high seas in a small boat…no land in sight. After dinner (I didn’t eat much). Jon suggested that we go to 7-11, that there was a “Free Slurpee Promotional”. The kids and Jon were excited…they like Slurpees. I liked the price tag., so I decided that I would partake. Off we went…four Coke Slurpees.
Jon handed me a bright green 7-11 cup, with a plastic dome cover…no regular cover could hold all this fluffy Coke goodness. I took my first sip…it felt kind of decadent, like I was doing something extremely subversive, I was about to join the Coke Generation…(s).
This was just what the doctor ordered, the coke syrup, the bubbles, the icey fluff…this was my elixir of life. I started to feel better than I had in days. Why had I poo-pooed this all my life? This was goodness in a cup.
I will need to drink more of these, I remember that there is a 7-11 a few blocks from the apartment in Boston…I just will need to harness the energy to walk there….but I must walk there.
So glad I found this magical Slurpee. When after drinking almost ¾ of the cup, I put it on the counter top with the intention of revisiting it later. Turns out I didn’t revisit it until the next morning. I was a bit disconcerted to see that the magical Coke Slurpee had eaten through its bright green Magical cup. Hmmm…wonder what else it eats through. I don’t care, maybe it is its superior erosive qualities that are just what I need right now.
Up with Coke Slurpees!
When I got home this weekend, I was feeling the way I had all week, like I had been on the high seas in a small boat…no land in sight. After dinner (I didn’t eat much). Jon suggested that we go to 7-11, that there was a “Free Slurpee Promotional”. The kids and Jon were excited…they like Slurpees. I liked the price tag., so I decided that I would partake. Off we went…four Coke Slurpees.
Jon handed me a bright green 7-11 cup, with a plastic dome cover…no regular cover could hold all this fluffy Coke goodness. I took my first sip…it felt kind of decadent, like I was doing something extremely subversive, I was about to join the Coke Generation…(s).
This was just what the doctor ordered, the coke syrup, the bubbles, the icey fluff…this was my elixir of life. I started to feel better than I had in days. Why had I poo-pooed this all my life? This was goodness in a cup.
I will need to drink more of these, I remember that there is a 7-11 a few blocks from the apartment in Boston…I just will need to harness the energy to walk there….but I must walk there.
So glad I found this magical Slurpee. When after drinking almost ¾ of the cup, I put it on the counter top with the intention of revisiting it later. Turns out I didn’t revisit it until the next morning. I was a bit disconcerted to see that the magical Coke Slurpee had eaten through its bright green Magical cup. Hmmm…wonder what else it eats through. I don’t care, maybe it is its superior erosive qualities that are just what I need right now.
Up with Coke Slurpees!
Sunday, July 13, 2008
It's all relative
Writing this blog has shown me that there are several small stories that happen within everyone’s day that may be worth telling, but if we don’t write them down, we don’t remember them. So I digress…the townhouse building that I’m staying in has three apartments, one on each floor. I’m on the top floor. There is an old woman (I’m not sure how old though…old starts getting older, as I get older); maybe she is in her early seventies. She seems to be the eyes for the building. I wasn’t there more than a day when she popped out of her apartment to see who I was. I introduced myself to her, told her that I would be staying in the top floor apartment for the next several weeks while I was receiving radiation therapy at Mass General. She had a cast on her leg so I ask her about that…she had apparently tripped on the cobblestone street while coming home one day, and hurt her knee. She tells me she may need surgery, we chat a bit more, we seemed bonded in pain…gave us something to talk about. We exchange our “nice to meet yous”, and say good-bye. I felt that I had passed muster.
The weeks come and go, and we don’t see each other, or should I say I don’t see her…she may be peep-holing me. Then on this past Friday (14th treatment day), I return to the building and she pops out to say hello, but she definitely seems like a woman on a mission. I ask her how her knee is doing. She says she has four more weeks, meaning four more weeks in the cast. She asks me how I am, and I say I have four weeks…meaning I have four more weeks of radiation. She asks me, how my “bloods” are? This catches me by surprise, but maybe this is a topic of conversation between she and her old friends. I say, “My bloods are fine”. So, the conversation seems cordial, and the conversation seems over. But it’s not. She has a pressing matter.
She asks me if I’ve seen her newspaper? I reply, “No, I hadn’t”. I think again that that’s the end of our conversation, but it isn’t. She continues to tell me that her paper is usually delivered right outside the front door, and that for the past few days she has not received it. She is wondering who is taking it. Is she thinking I’m taking her paper? She tells me more. She tells me that she didn’t receive her Sunday paper, and that she thought perhaps that someone had picked it up and gone down to Starbucks on the corner with it; she decided to hobble down to the Starbucks in her cast to check out her theory. When she got there, there was a woman reading a paper, and she told me “she looked very guilty, but I couldn’t prove anything”. I’m not sure where this is going, but I feel the need to tell her “I’m not around on the weekends, I’m only in the building on the weekdays”. This new information is new information. “Oh”, she says, “I didn’t know that”. I have to tell her what I think she wants to ask (I’m going to be living here another four weeks, and don’t want this woman to either be thinking I’m taking her paper, or wasting her time on this theory). I say, “I left the apartment today at 8:15A and there was no paper outside on the stoop, and if you are wondering if maybe I may be taking your paper…I’m not, but I will look out for you to see if I see any guilty looking characters”. She seems satisfied. We say good-bye. I went upstairs to pack up and go home, she went back to spying on the building. As I climb the stairs I think, I’m worried about this tumor in my head, and she’s worried about her newspaper. On another day, at a different time perhaps I would be dwelling on who was stealing my paper…but this is not that time…and that’s life.
The weeks come and go, and we don’t see each other, or should I say I don’t see her…she may be peep-holing me. Then on this past Friday (14th treatment day), I return to the building and she pops out to say hello, but she definitely seems like a woman on a mission. I ask her how her knee is doing. She says she has four more weeks, meaning four more weeks in the cast. She asks me how I am, and I say I have four weeks…meaning I have four more weeks of radiation. She asks me, how my “bloods” are? This catches me by surprise, but maybe this is a topic of conversation between she and her old friends. I say, “My bloods are fine”. So, the conversation seems cordial, and the conversation seems over. But it’s not. She has a pressing matter.
She asks me if I’ve seen her newspaper? I reply, “No, I hadn’t”. I think again that that’s the end of our conversation, but it isn’t. She continues to tell me that her paper is usually delivered right outside the front door, and that for the past few days she has not received it. She is wondering who is taking it. Is she thinking I’m taking her paper? She tells me more. She tells me that she didn’t receive her Sunday paper, and that she thought perhaps that someone had picked it up and gone down to Starbucks on the corner with it; she decided to hobble down to the Starbucks in her cast to check out her theory. When she got there, there was a woman reading a paper, and she told me “she looked very guilty, but I couldn’t prove anything”. I’m not sure where this is going, but I feel the need to tell her “I’m not around on the weekends, I’m only in the building on the weekdays”. This new information is new information. “Oh”, she says, “I didn’t know that”. I have to tell her what I think she wants to ask (I’m going to be living here another four weeks, and don’t want this woman to either be thinking I’m taking her paper, or wasting her time on this theory). I say, “I left the apartment today at 8:15A and there was no paper outside on the stoop, and if you are wondering if maybe I may be taking your paper…I’m not, but I will look out for you to see if I see any guilty looking characters”. She seems satisfied. We say good-bye. I went upstairs to pack up and go home, she went back to spying on the building. As I climb the stairs I think, I’m worried about this tumor in my head, and she’s worried about her newspaper. On another day, at a different time perhaps I would be dwelling on who was stealing my paper…but this is not that time…and that’s life.
Saturday, July 12, 2008
Day Thirteen and Foutreen
My friend Leslie and her daughter arrived on Thursday from Long Island to take me, (feels more like rescue me after this week) from Boston and bring me home.
This has been a hard week, both emotionally and physically. I feel sicker this week than I did last, and the novelty of the travel back and forth has worn off. I like Boston, and I love seeing all my friends, but I miss my home and my family, and my stuff. This will be the end of my third week, and I’m ready to cry “Uncle”, hard to think about having another four weeks to go. How much worse can I feel and still keep up this pace? I’m hoping the tide will turn.
After my Friday treatment, I spoke to the Proton nurse, who gave me something for the nausea, (not supposed to make me more tired), and then she said “the worst of the symptoms usually pass after the 20th treatment”. I think “Oy vey, I only just finished my fourteenth, I will hang on for a bumpy ride until the end of next week, when I reach the magical 20th”. I also think “Universe heal my nauseous, tired body”. Please chant with me.
It’s Friday, number 14 treatment is finished, it’s time to pack up and go home. “Leslie, please bring my chariot and wing me home”. I can’t wait.
This has been a hard week, both emotionally and physically. I feel sicker this week than I did last, and the novelty of the travel back and forth has worn off. I like Boston, and I love seeing all my friends, but I miss my home and my family, and my stuff. This will be the end of my third week, and I’m ready to cry “Uncle”, hard to think about having another four weeks to go. How much worse can I feel and still keep up this pace? I’m hoping the tide will turn.
After my Friday treatment, I spoke to the Proton nurse, who gave me something for the nausea, (not supposed to make me more tired), and then she said “the worst of the symptoms usually pass after the 20th treatment”. I think “Oy vey, I only just finished my fourteenth, I will hang on for a bumpy ride until the end of next week, when I reach the magical 20th”. I also think “Universe heal my nauseous, tired body”. Please chant with me.
It’s Friday, number 14 treatment is finished, it’s time to pack up and go home. “Leslie, please bring my chariot and wing me home”. I can’t wait.
Thursday, July 10, 2008
Day Twelve
Got together for lunch with two longtime friends from college today. We all went to school at BU. They stayed here, I went back to New York. It was great to see them, it had been a while since we all sat together eating lunch...the dining digs were definitely more upscale than back then, the conversation topics were different, what we ate was different...back then it was more like a Greek Pizza and a 6 pack of beer. There may still be the occasional time to indulge in such a meal, but back then it was more of a regular experience. We all look pretty much the same...a bit older, but it doesn't seem like 30 years older.
I ask both of them if they feel any different than they did back when we were in college together? They each say, "not really, I feel pretty much the same". I think "can that really be true?" Me? I definitely feel different.
Proton at 4P.
I ask both of them if they feel any different than they did back when we were in college together? They each say, "not really, I feel pretty much the same". I think "can that really be true?" Me? I definitely feel different.
Proton at 4P.
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