I had dinner, well more like a snack with a friend this evening. We’ve known each other thirty years. Our conversation started simply enough, but some how took a familiar turn for me, and it made be think some things. The conversation pinged on my somewhat sensitive patient Achilles heel. I offer up the following thoughts.
Being sick sucks, having a great family and friends, a job you love, a life you appreciate doesn’t mean that being sick can’t still suck. These things can mutually exist, acknowledging one does not mean you are denying the other.
I am very much a believer in positive thinking, but acknowledging that something is hard or bad, does not mean that you are not thinking positively. Not thinking positively in my mind is thinking that the hard times are unchangeable, not that they don’t exist.
So I offer up as the patient who over the years has been read a long laundry list of the gifts in my life that I need to remember and concentrate on during hard times…I do not forget what I have, but I can not forget what I don’t have. It is this unrest that makes change happen. There shouldn’t be any guilt in feeling and saying that something that is bad…is bad, but always believe it can change.
Wednesday, July 23, 2008
Day Twenty-Two, Best Laid Plans
Got a call from Proton Center at 9:30A to let me know that the Proton machine is down, could I get to Photon at 10A? I was actually sleeping when they called (that’s what I am supposed to be doing according to my doctor…resting), and no way was I going to be able to make it over there in a half hour. Second choice please? They tell me that they have an 11:30, and if I can’t take that, they’re not sure what they can do for me. I had no real reason for not being able to make the 11:30…except this…I had made plans to have a friend come by the apartment (where I had planned to be shortly after check-out time at the hotel), at around 4P. My original appointment before the shuffle, was supposed to be at 4:10P. Oh, best-laid plans. I definitely wasn’t going to be able to find someone on such short notice to come with me to an 11:30, so I would have to go alone...this was the first time since I started radiation that I had to go by myself. The other thing was that I didn’t know how I could go to Photon, which I had already been warned might have an hour and half wait, lie down afterwards, and check out of the hotel by 1P (which would already be an extended check-out, normal check-out is at Noon).
All this re-jiggering put me in quite a state; too much for first thing in the morning. I called Jon and told him my story…really more like cried my story. I was thinking along the lines of I’ll need to check out early, run my stuff over to the apartment, and then get back for Photon at 11:30…never mind the fact that I won’t be going with anyone, which was a sadness all on it’s own. Then Jon said a most wonderful thing…he said “why don’t you just extend your stay at the hotel for another night, and not worry about having to check out. Things are hard enough as it is, just stay.” My initial thought was concern about the additional cost, but after I got over that, I just was so glad for Jon’s clarity”. One more night in this sanctuary. This may not have been how things were supposed to go, but I’m actually really grateful how things turned out”. “The best-laid plans of mice and men often go awry”…and that can be okay.
All this re-jiggering put me in quite a state; too much for first thing in the morning. I called Jon and told him my story…really more like cried my story. I was thinking along the lines of I’ll need to check out early, run my stuff over to the apartment, and then get back for Photon at 11:30…never mind the fact that I won’t be going with anyone, which was a sadness all on it’s own. Then Jon said a most wonderful thing…he said “why don’t you just extend your stay at the hotel for another night, and not worry about having to check out. Things are hard enough as it is, just stay.” My initial thought was concern about the additional cost, but after I got over that, I just was so glad for Jon’s clarity”. One more night in this sanctuary. This may not have been how things were supposed to go, but I’m actually really grateful how things turned out”. “The best-laid plans of mice and men often go awry”…and that can be okay.
Day Twenty-One
The locksmith called at 10:45…”could I meet him at the apartment building in a half an hour?” That seemed like a no-brainer. ”No problem” I said, “and while you’re changing the locks, I’ll wait at the Starbucks”. I packed my laptop and about 15 minutes later we (me and my laptop), are off to the apartment. It’s a quick jaunt or so I thought. This short six block walk with my laptop totally evaporates my energy reserve to the point that I thought I was going to be sick before I even met the locksmith. We get to the apartment building at the same time. He gets out of his truck, at which time (probably after seeing what color of ashen I am), says “You don’t have to climb the stairs, I’ll call you when I’m done, and meet you down at the corner Starbucks”. And so he did. He finished in about a half hour, and brought with him, two sets of keys, presumably one to lose, and one to lose later. Just kidding. He gave me the keys; I gave him a check. After finishing my fortifying Chai Latte, I head back to the hotel. I missed it already.
Later in the day, my friend Karen came by the hotel to accompany me to Proton at 4:30P. We wait until 5:30P before I'm taken…what’s new? Afterward, I rested, she did some nearby window-shopping, and then we went to dinner. It was a lot of fun, she and I haven’t spent that much time together in maybe twenty years.
I devise a plan before we go to dinner, to take one of my three luggage bags with me; and then after dinner Karen would carry it to the apartment,.. which is only four blocks from the restaurant. This would make it easier for me the next day when I’m checking out; I would have only two bags to walk up the steps, instead of three. And so we followed this plan.
We get to the apartment building and I open the lock with my brand new key, step into the foyer, smell the combination of the now all too familiar fragrance of watermelon lollipop, and the most potent vanilla candle in the universe (under other circumstances, this may not be stomach-turning, but now it surely is). I mount the stairs, open the door to the apartment with my new key, and smell that other less describable smell of "old building"…we walk up the last flight of stairs into the apartment, lay down my bag, and I feel all those familiar feelings from last week flood over me, and I think , “I’m not so ready to come back here again tomorrow, I need to find a way to move past the smells, or have the smells pass me by. Maybe if I just had one more day at the hotel?".
Later in the day, my friend Karen came by the hotel to accompany me to Proton at 4:30P. We wait until 5:30P before I'm taken…what’s new? Afterward, I rested, she did some nearby window-shopping, and then we went to dinner. It was a lot of fun, she and I haven’t spent that much time together in maybe twenty years.
I devise a plan before we go to dinner, to take one of my three luggage bags with me; and then after dinner Karen would carry it to the apartment,.. which is only four blocks from the restaurant. This would make it easier for me the next day when I’m checking out; I would have only two bags to walk up the steps, instead of three. And so we followed this plan.
We get to the apartment building and I open the lock with my brand new key, step into the foyer, smell the combination of the now all too familiar fragrance of watermelon lollipop, and the most potent vanilla candle in the universe (under other circumstances, this may not be stomach-turning, but now it surely is). I mount the stairs, open the door to the apartment with my new key, and smell that other less describable smell of "old building"…we walk up the last flight of stairs into the apartment, lay down my bag, and I feel all those familiar feelings from last week flood over me, and I think , “I’m not so ready to come back here again tomorrow, I need to find a way to move past the smells, or have the smells pass me by. Maybe if I just had one more day at the hotel?".
Tuesday, July 22, 2008
Day Twenty
This is the best ceiling ever. Over the last 18 years since I had my first surgery in 1990, I have stared at many ceilings. Some ceilings cracked, some not, different colors, acoustic tile, fans, beams, moldings, air-conditioner vents, recessed lighting, all different types of lighting fixtures. I’ve thought about taking pictures of all the ceilings that I ‘ve had to stare at over the years…thought it would make a funny coffee table book. I’ve stared at these ceilings in different stages of my repair and recovery…to the point where it’s become a thing, sort of a Pavlovian thing. I cannot lie in bed and stare at a ceiling without having all those sick feeling memories flow over me. If I’m well, I’m not lying in bed too much; I have to get up and out.
I checked into the Liberty Hotel yesterday (Monday)…I love this place. I love that they offered me a glass of champagne (which I declined-but loved that they offered). I love that they offered me a beautiful ripe plum; I love the cool neutral tans and browns that decorate and adorn the room. I love that it was a former jail and that they’ve kept all the original brick and architecture. I love that the hotel restaurant is called the “Clink”. I love the fluffiest of down pillows and comforter. I love the shower that sits above my head (not at my chin). I love the Molton Brown bath products, I love the smells, and I even love the ceiling. It’s a tray ceiling, painted a calm linen white…there’s not one thing off-putting about it. I love it here in this spa-like room. I feel better just being here, certainly improves radiation Monday. I could live here.
When it was time to go to Proton, it was just a quick fifteen giant steps to get there and to get back. Being able to skip the stairs at the apartment, and the usual buying and unpacking of Whole Food items on this day, gave me a bit of an energy reserve. After radiation, I was acutally up for dinner in the North End with my friend Sandy. Sandy drove me up to Boston, went with me to Proton, ate with me, and incredibly drove back the same day. It was, I dare say, as these days go...a good day. I felt a bit more like me.
I wish every day was Monday at the Liberty Hotel.
I checked into the Liberty Hotel yesterday (Monday)…I love this place. I love that they offered me a glass of champagne (which I declined-but loved that they offered). I love that they offered me a beautiful ripe plum; I love the cool neutral tans and browns that decorate and adorn the room. I love that it was a former jail and that they’ve kept all the original brick and architecture. I love that the hotel restaurant is called the “Clink”. I love the fluffiest of down pillows and comforter. I love the shower that sits above my head (not at my chin). I love the Molton Brown bath products, I love the smells, and I even love the ceiling. It’s a tray ceiling, painted a calm linen white…there’s not one thing off-putting about it. I love it here in this spa-like room. I feel better just being here, certainly improves radiation Monday. I could live here.
When it was time to go to Proton, it was just a quick fifteen giant steps to get there and to get back. Being able to skip the stairs at the apartment, and the usual buying and unpacking of Whole Food items on this day, gave me a bit of an energy reserve. After radiation, I was acutally up for dinner in the North End with my friend Sandy. Sandy drove me up to Boston, went with me to Proton, ate with me, and incredibly drove back the same day. It was, I dare say, as these days go...a good day. I felt a bit more like me.
I wish every day was Monday at the Liberty Hotel.
Sunday, July 20, 2008
Day Nineteen...Oh those keys
I walk up to the third floor, walk down to the ground floor, walk to Proton, walk back, shop, unpack, travel to and from Boston, and radiate…. this is what I do.
My doctor told me after my session on Friday, that I may be doing too much, that I should consider staying in Boston on the weekend…that the traveling may be contributing to my exhaustion and my general state of unwellness…that what I’m going through is tiring on its own. But what am I really doing? I’m existing. I’m not engaging in any high impact activities, not even low impact activities, unless you consider walking from here to there. I have to go home on the weekends...it's what I look forward to all week long. The thought that I couldn’t/shouldn’t do this, makes me feel like crying. I think the weekday routine is more of what is wearing me out, not the getting here and back. I think to myself…”I need a break from the energy sapping midweek routine. But what would that be?” I need to radiate, (can’t skip that), I need to get to and from radiation, and at this point most of my friends who are accompanying me to Proton, are also driving me (so not much more I can do to make that any easier), and I need to shop and eat. Oh those apartment stairs though. I’m grateful for the apartment and it’s location, but like any living space, it comes with its own set of responsibilities and quirks. I have to take the trash out (note to self: buy ant traps, and snake kitchen sink, so water doesn’t back up into bathroom sink,); I have to look after its tidiness, etc. An apartment is not a hotel. It would be great to stay at a hotel for a couple of days, but the additional expense would make me feel guilty. I continue to think.
And then something happens…
My friend Pat drove up to Boston to take me to radiation and drive me home on Friday. I packed up my stuff as usual. I stripped the bed, took home the dirty towels, packed up my computer equipment, and made sure the kitchen was free of any ant attracting items. I locked the door and then I put the key to the apartment in my pants pocket. I thought about putting it into one of my carry-home bags, but it just seemed a step too far (I was anxious to get out of town)…I felt it would be fine in my pocket. I lugged my three large bags down the stairs. Pat and I hit the road and didn’t stop until we hit a Subway shop about and hour and half away from Boston. I checked my pocket…still had the key. Pat went to Dunkin Donuts, I stayed in the car…I still had my key. We got back on the road, and about thirty minutes into this part of the drive, we both heard a clinking sound. It sounded like it could have been my key. I checked my pocket…no key. One and one is two…the sound must have been the key. We continued to drive home; we did not stop again. We did not open the door to the car until we got to my house…(all the time I’m confident that when I get home, I’d look under the seat and find the key). We pull into the driveway. I open up the door and immediately start to look for they key. I look, she looks, Jon looks, Jamie looks, Rachel looks…we look everywhere…in every nook and cranny. We check my bags…we check Pat’s bags…NO KEY! It’s an out of this world mystery. Through what void did this key exit? I start to worry about the logistics. How will I get another key? When will I get another key? Where will I stay?
And then it hits me…I will stay in a hotel…I’ll to stay at a hotel. I’ll have that break I so badly need. Jon called and booked a hotel room at a hotel directly behind Mass General for Monday and Tuesday. Until I’m able to get duplicate keys from the building’s landlord on Tuesday…I will use the elevator, order room service, watch TV (no TV at the apartment), bask in calm, cool neutrality, and just happily do very little. The Universe took the apartment key, and delivered me just what I needed…a hotel room.
My doctor told me after my session on Friday, that I may be doing too much, that I should consider staying in Boston on the weekend…that the traveling may be contributing to my exhaustion and my general state of unwellness…that what I’m going through is tiring on its own. But what am I really doing? I’m existing. I’m not engaging in any high impact activities, not even low impact activities, unless you consider walking from here to there. I have to go home on the weekends...it's what I look forward to all week long. The thought that I couldn’t/shouldn’t do this, makes me feel like crying. I think the weekday routine is more of what is wearing me out, not the getting here and back. I think to myself…”I need a break from the energy sapping midweek routine. But what would that be?” I need to radiate, (can’t skip that), I need to get to and from radiation, and at this point most of my friends who are accompanying me to Proton, are also driving me (so not much more I can do to make that any easier), and I need to shop and eat. Oh those apartment stairs though. I’m grateful for the apartment and it’s location, but like any living space, it comes with its own set of responsibilities and quirks. I have to take the trash out (note to self: buy ant traps, and snake kitchen sink, so water doesn’t back up into bathroom sink,); I have to look after its tidiness, etc. An apartment is not a hotel. It would be great to stay at a hotel for a couple of days, but the additional expense would make me feel guilty. I continue to think.
And then something happens…
My friend Pat drove up to Boston to take me to radiation and drive me home on Friday. I packed up my stuff as usual. I stripped the bed, took home the dirty towels, packed up my computer equipment, and made sure the kitchen was free of any ant attracting items. I locked the door and then I put the key to the apartment in my pants pocket. I thought about putting it into one of my carry-home bags, but it just seemed a step too far (I was anxious to get out of town)…I felt it would be fine in my pocket. I lugged my three large bags down the stairs. Pat and I hit the road and didn’t stop until we hit a Subway shop about and hour and half away from Boston. I checked my pocket…still had the key. Pat went to Dunkin Donuts, I stayed in the car…I still had my key. We got back on the road, and about thirty minutes into this part of the drive, we both heard a clinking sound. It sounded like it could have been my key. I checked my pocket…no key. One and one is two…the sound must have been the key. We continued to drive home; we did not stop again. We did not open the door to the car until we got to my house…(all the time I’m confident that when I get home, I’d look under the seat and find the key). We pull into the driveway. I open up the door and immediately start to look for they key. I look, she looks, Jon looks, Jamie looks, Rachel looks…we look everywhere…in every nook and cranny. We check my bags…we check Pat’s bags…NO KEY! It’s an out of this world mystery. Through what void did this key exit? I start to worry about the logistics. How will I get another key? When will I get another key? Where will I stay?
And then it hits me…I will stay in a hotel…I’ll to stay at a hotel. I’ll have that break I so badly need. Jon called and booked a hotel room at a hotel directly behind Mass General for Monday and Tuesday. Until I’m able to get duplicate keys from the building’s landlord on Tuesday…I will use the elevator, order room service, watch TV (no TV at the apartment), bask in calm, cool neutrality, and just happily do very little. The Universe took the apartment key, and delivered me just what I needed…a hotel room.
Thursday, July 17, 2008
Day Eighteen...only Seventeen more to go
I've peaked,...I'm able to look over the mountain and see the other side. It's downhill from this point on; from now on I will have completed more Proton sessions than I have left to complete. On the other side of the mountain, I've found my energy. Knowing I have less distance to go than I've already traveled has renewed me. I even feel slightly less sick today, don't know if it's the psychological mood lifter, or I have turned the tide. This is a good day, day number Eighteen. I can see the Finish Line ahead...really see it. A round of Slurpees for everyone!
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