Thursday, July 31, 2008

Day Twenty-Six and Twenty Seven

Jamie I ended up at the last minute staying at the Liberty Hotel on Monday night (Day 25) and Tuesday night (Day 26). I couldn’t face coming into the apartment and finding out that maybe the smell hadn’t evaporated, and then having it be too late to find another place to stay…so on Monday morning Jon booked a room for us for two nights.

On Tuesday I sent Jamie over to the apartment as a neutral nose. She sniffed it out. She called and said that as the neutral nose, she could safely say…”it still smelled, and that for her it was not so good, but not so bad... but because ever scent is seemingly sending me this way and that, that she didn’t think I should stay there”.

Now what? We couldn’t continue to stay at the Liberty, although it was the easiest solution, I just couldn’t justify the extra money. The other alternative would be Mass General Hospital Housing (I had stayed here when Jon and I came up to Boston for my set-up day). It’s fairly close to the hospital (although at the top of a very, very steep hill-we’d have to take a taxi), it’s clean, and it’s cheap. I made a call to find out if they had a room available for Wednesday and Thursday night…which they did. So that will be our digs for the next two nights. Jamie is very excited. Just kidding. What can I say, once you’ve been to the Liberty Hotel, it’s hard not being at the Liberty Hotel.

My friend from college, who lives in Seattle, but is vacationing on the Cape, drove into Boston for the afternoon to have lunch with Jamie and I…she hadn’t seen Jamie in 12 years…big change. It was a lot of fun; wish it could have been longer. She helped move us from the Liberty to MGH housing, and then was even able to take us to Proton at 3:30P. Had my 27th treatment. Down to single digits now, only 8 more to go.

Tuesday, July 29, 2008

Day Twenty-Five

I’ve thought many times during this process about how lucky I am that I’m having radiation in the summer. I don’t have to deal with the inclement weather conditions. Traveling by any form of transportation would be more difficult, if instead I were having treatment during the winter. I can pack fairly lightly. Jamie is home from college to help out. Rachel is in camp until 5P and is able to go over to her best friend’s house after camp (they go to the same camp, but different schools). My friend’s have slightly more flexible work schedules in the summer so they’re more able to help out. Spiritwise I’m stronger in summer…always have been, and lastly I’m kind of tan (not the kind of tan I’d be if I were really concentrating on it, but tan enough). The power of tanness is not to be underestimated, when you feel like crap, but are tan, you just feel better. It is not easy feeling green…but looking green just makes it that much worse.

Jamie and I (Jamie is my chaperone this week), were dropped off in Boston by my friend Renee and her daughter at about 2P; they ate a quick lunch with us, wished us a good week, and an hour later were back on the road to go home…hopefully avoiding much rush-hour traffic. Thank you, thank you Renee. At 3:30P Jamie I were at Proton. The waiting room can be a tough place to be; there are many patients who are having chemotherapy as well as radiation, and others are receiving radiation twice a day. This is my sixth week, and I seem to sit with the same group of people every day; we started at the same time, and we will finish more or less at the same time. I have watched as we’ve outwardly changed. We’re all a lot less conversational and zippy than when we first started…some of us have had some hair loss, some are swollen from taking sterioids, other thin from lack of appetite. I particularly notice that some of my co-sitters have turned a deep crimson color, these people are receiving radiation for eye tumors, and they wear their radiation on the outside. It was yesterday when I was looking at them, that I thought that must be why my head hurts so much…the inside of my head must look like the outside of theirs. Tan on the outside, crimson on the inside.

Sunday, July 27, 2008

Night Twenty-Three/Day Twenty-Four...Oh that Smell

I left the hotel around 1:30P, got to the apartment around 1:35P. I’m renewed, still tired, but I feel at the lower ebb of horrible. I open up the front door and I’m immediately attacked by that highly potent vanilla candle smell. I hold my reserve and my cookies…and make way up the stairs to the apartment. I open the front door…yuck, old apartment smell…but I’m dealing…and then I climb the last set of stairs into the apartment…and I can’t deal. It’s overwhelming, indescribable, and awful. What is this? Did it always smell this way, and I was less sensitive? Did it only start to smell this way, and I’m too sensitive. Did it always smell this way, and I’m too sensitive? What to do? I’m thinking heavy artillery, but not too heavy, that comes with smells of its own. I decide to go to Whole Foods for options. Just being inside a grocery store right now is not what I need, but I persevere. I decide to buy some eucalyptus branches…can’t hurt. I look for other options, but can’t find them. I return to the building, breathe through my mouth and break out those branches. Not really the immediate solution I need…maybe in time, but not helping so much at the moment.

It wasn’t much longer, and Jon arrived. He had driven up to Boston as planned, to spend the night, and drive me home on Friday. He comes armed with a plumber's snake and some Liquid Plumr for the stopped up kitchen drain. He also does a “just in case” mass cleanout on the fridge. He appoints fresh smelling chemical devices throughout the apartment. He Fabreezes things...he is most active on “smell elimination detail” but there is no real improvement. How upsetting.

I start to come up with “what next” solutions. I could leave the apartment and stay out until I absolutely have to come back. I can look into other housing solutions…I do the math about how much it would be to stay in a hotel for the remainder of my treatment, and that just seems prohibitively expensive. It depresses me to think I may not have that many options, and how am I going to live with this odor. Thinking too much about what the odor may actually be, only makes me feel worse, and yet I can’t seem to help myself from thinking about this. Stop the madness.

Jon and I go to Proton at around 4:10P. I’m not done until 5:30P. I can’t bear going back just yet, so we decide to go over to my home away from home…the Liberty Hotel…for a beverage and a small snack. We finish up around 6:30P…maybe this is enough time for all of Jon’s efforts to have taken effect…not to mention the eucalyptus. We head back, we head up, we head in…Nope…no such luck.

This was a most miserable night, couldn’t wait to leave. The only favorable thing I could tell myself is that I will only have another 8 nights here, and that maybe over the weekend when I’m away, things will improve. Wish this with me.

P.S.-Proton was unusually late in the day on Friday…it was 2:30P. Jon and I didn’t get on the road until almost 4P. We hit traffic everywhere, and didn’t get home until 9P. I was beyond toast when we got home. It was so good to smell the non-smell of home. Twenty-four treatments down, 11 more to go.

Friday, July 25, 2008

Day Twenty-Three...A Moment In Time

It was time to check out of the hotel. I went downstairs to the front desk, I was carrying my 30 lb knapsack with all my electronic gear, and a pillowcase stuffed with all my clean laundry for the apartment (sheets, towels, etc), a classy look to be sure. I checked out and grabbed one of the hotel’s delicious free plums for the road…the road up the block to the apartment. It was pouring, so I decided to sit a while in the hotel lobby. I parked myself on a couch, I was not far from the hotel bar (a good place for viewing)…and there I stayed for about twenty minutes or so. A couple, in their mid-50's walked up to the hotel bar after apparently just getting caught in the downpour. She was tall, fairly fashionable, wet, with very short silver hair. Her husband was tall as well, heavy-set, wet and had a t-shirt that said Harley Davidson California, they both seemed like they could come from California, but he didn’t really seem like the Harley type. I watched the both of them at the bar, the way you just do when you’re in a hotel lobby. I was not so far away, and the lobby was not so quiet that I couldn’t hear the bartender ask where they had been when they got stuck in the rain. She said that they had walked all the way to the Boston Common, that they wanted to go before their flight this afternoon. I was struck a bit by the way she said all the way to the Boston Common. The Commons are no more than seven blocks from the hotel, not such a long walk really, and they looked like they were up for a lot more walking than that.

They finish their iced teas at the bar and leave. Shortly after, I decide to saunter downstairs to catch a cab to the apartment…I’m not going to walk that five or six block walk again, not after my experience on Tuesday. I’m not going to walk all that way again. When I get downstairs, I see that the California couple is also waiting for a cab at the hotel taxi stand. It’s like a monsoon now, and she ducks inside the hotel. Her husband stays outside to assure that they don’ lose their place in the taxi queue. I stand outside for a few minutes more when I start to feel way more moist than I want to feel…I duck inside the hotel and find myself standing near the California lady with the really short silver hair. She asks me “if Boston is home for me or am I going to the airport?” I say, “No, I’m not from Boston, and I’m heading to an apartment just up the block.” She then says “but you stay at the hotel?” I tell her that I’m a patient at MGH, and that I’m staying at a friend’s apartment while I’m here for treatment, but that the stairs had started to become too much. She said, “I’m a patient also.” “What kind of treatment are you having?” I tell her “I’m here for radiation.” She says “for breast cancer? You look great, nobody would ever know that you were undergoing treatment. I’m sure you don’t feel great, but you look really good”. This makes me feel terrific. A non-friend, non-family member, that doesn’t have to say I look good, but says so because she really thinks it. An unbiased compliment from outside my inner circle perhaps stupidly carries a lot of weight. The fact that the world does not gaze upon you with curiosity is key when you are going through an illness. It makes you feel like you fit in. I tell her, that I’m receiving radiation for a skull-based brain tumor (don’t know why I feel comfortable enough to tell her this), but I guess I feel closer to her because she’s been so complimentary. She says “Me too, I had surgery two months ago, that’s why my hair is so short”. She went on to say “she was just back for her first follow-up since surgery, and that they’re holding off on radiation for her at the moment”. I tell her “You look great, no one would ever know”. She said “really?” I said “really”, and I wasn’t lying, and I wasn’t in her inner circle, and I could tell it meant as much to her as it did when she complimented me. Her cab arrived, we wished each other good luck, and I know for both of us, we would think about this mutual exchange all day, and that we would feel just a bit better because of it. After she left, I thought back to how I heard her talk to the bartender about how she walked all the way to Boston Common…only seven blocks from the hotel, and then my taxi pulled up to take me the five blocks back to the apartment. It made sense. We may look okay, but we’re not…not yet.

Wednesday, July 23, 2008

Just a Thought

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.

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.

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?".

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.

Weekend Four

The ahness of home. I think about going to the hotel on Monday and it makes me giddy.

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'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!

Day Seventeen

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.

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 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?"

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, 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.

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!

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.

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.

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.

Wednesday, July 9, 2008

Day Eleven

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.

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 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 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 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" 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-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 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 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 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 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 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 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 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

The Mask (that's me), and the brass di-cut of the tumor

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 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.