Day Thirty

Rachel is too sick to go to camp and I feel bad to leave her, but Jamie and my parents will watch over her and hopefully she will feel good enough tomorrow to resume her normally scheduled program.

Right before Jon and I are about to leave New York to travel to Boston, I got the call…”Heidi, Proton is down today, you’ll have to go to Photon at 4P”. I’m not thrilled about this (I was looking forward to having my second to last Proton session, and then putting that part of radiation behind me), but at least the appointment is only a half hour earlier than my originally scheduled 4:30P Proton…so no big hiccup in the travel plans.

We arrive in Boston at around 2:45…too early to check into the “fabulous” MGH Beacon House and still make it back down the hill for my appointment; we instead opt to park our car and check out the truly fabulous MGH cafeteria. This is no joke, a better hospital cafeteria I’ve never seen, perhaps not a better cafeteria period, except maybe the one at the Museum of Natural History in New York. Been there? If you have, you know what I mean. We’re talking goodness…anything a person might want foodwise…is here. I opt just for a delicious Berry Smoothie, and Jon has a fruit salad…which is unfortunate…one should really come with a bigger appetite than either of us had at that moment.

We pass the time, and an hour later we walk over to Photon. If I didn’t mention it before, Photon is the radiation that creates a firewall around my tumor. Its intention is to kill any stray cancerous tumor cells that may have moved into normal tissue around the tumor itself. I don’t think it’s my imagination, but I generally feel worse after Photon sessions…more tired, more dizzy, more sick…but I tell myself…after this one I only have three more Photon sessions left, and this makes me feels a bit better.

Afterward, we check into Beacon House. Jon has experienced this fine establishment once before, but does't really remember it that well (we were only in the room for about 8 hours when we/he stayed here the last time). We are greeted by both resident dogs, Snowball (I call this dog Meatball), he is a rather rotund all white chihauhau, and Kenya, a very friendly Cockapoo. It’s nice having dogs around…feels more like home. We check into our room, and Jon thinks that my description of the room does not disappoint.

Weekend Six

Rachel sprouted a cold and I have to try every incantation in the book to see that I don’t get this cold. We spend most of the weekend trying to stay clear from each other…this is sad for both of us…but necessary.

Day Twenty-Eight and Twenty-Nine

MGH Beacon House is no Liberty Hotel…but it does get internet service, it has over 100 channels on TV, the air conditioning works, it has a fridge with a freezer in wich I can keep my most needed cold paks (for my post-radiating headaches), the shower head is high and strong, and it has an elevator. It also has twin hospital beds complete with plasticized mattresses and pillows…in case one is to have an accident. There are “I’ve fallen but can’t get up” buttons near both the bed and the toilet. The towels are more to the exfoliating side than the luxuriating side…as are the sheets. The curtains and bedspreads are the kind that shouldn’t get too close to an open flame (no danger of this though…the stove is quite far away). The building is an elderly apartment building, (an old building with old people). MGH owns 16 of the units for outpatients and/or their people, to use at a defrayed cost. The building is at the top of perhaps the steepest hill in Boston…so walking after radiation is not an option…have to take a cab. I can walk down though. What is most agreeable about this most recent housing is that it is cheap, and it is relatively odorless…and for the next four days it will be fine. Jamie, however, is glad to be staying only two days. Friday will be her last day. Jon will be with me all next week, the first two of which we will spend at this Motel 6 with a twist, the next two and final days we will stay at the Liberty Hotel.

On Wednesday, the first night we spent at Beacon House, Jamie swears she didn’t sleep more than a few hours…I don’t think I did either…the squeaking of the plastic mattress and pillows was distracting.

My sister-in-law Rona drove up on Thursday, she arrived about 6P. We decided to eat dinner at Faneuil Hall, eating a bit of this and a bit of that...you can do this at Faneuil Hall; there are lots of food vendors from which to choose. This is actually a preferred way of eating for me at the moment. I can eat whatever suits me at the time, whatever my stomach thinks it may be accepting of, and I can eat as much or as little of it as I want. It was a nice night, and it seemed like the perfect thing for us all to be doing. Rona stayed in the apartment that night and was happy to do so.

Jamie and I went back to MGH Beacon House. We might have slept well on Thursday night but there was a fire drill in the middle of the night…that’s something that you wouldn’t have at the Liberty (unless of course there was a real fire). At first we didn’t know what it was…actually we still can’t figure out what it was. A bell rang at 5A, it sounded like a fire drill bell. I got up, looked through the peephole, checked the door to see if it was hot, waited to hear if there was any commotion or instructions, and then decided that we would wait for another sign…perhaps a knock at our door or a fire truck. Nothing. We later thought that maybe what we heard was the sound of the alarm being pulled after one of the elderly tenants had fallen off the toilet seat. Exciting times at Beacon House.

Jamie and I got up early on Friday morning after our “fire drill”,...actually I don’t think that either of us was really able to go back to sleep. My Proton appointment was at 8:30A, they took me surprisingly right on time…love when this happens. We took a taxi up to the top of the hill to get back to our “hotel”. Rona was ready to hit the road at 11A, we got home at 3:30P...early enough for me to be able to greet Rachel getting off her camp bus after having her first sleep-away camp experience...so glad to have not missed that, it was a big event in her life...she's been talking about going for years. I feel like I've missed a lot of the summer, I was so glad not to have missed this moment.

Friday was my 29th treatment, 6 more to go, only two of which will be Proton; the last four will be Photon…no mask at Photon…no more mask. I'm getting there.

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.

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.

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.

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.