Archive for May, 2007

best case scenario

I don’t meant to get maudlin here, but when my doctor and I first discussed what it meant for cancer to metastasize and what the implications were to me, I was a little shocked. This cancer might kill me! I thought. That tumor just sat in there quietly biding its time, subtly announcing its presence as it grew, giving me mild to annoying pain in my abdomen that I got so used to that I didn’t go to my doctor about because I always figure I’m being paranoid.

Lance Armstrong didn’t go to the doctor about his pains until very late in the game either, and for some of the same reasons. Please do not think for one second I’m putting myself in his category of athlete. I’m merely saying I was getting fitter and healthier and pushing myself harder and harder and was getting used to being in a certain amount of pain most of the time. The kind of pain you think means you worked hard.

ANYway, it didn’t take long before I got used to the idea of dying a lot sooner than I may have ever imagined. There was a certain amount of peace in my feeling, a letting go. I felt a new appreciation for the things I love in this world and all of its beauty. I also kept an eye on what I have always considered my secret weapon, humor. I never want to lose sight of the folly of living; how silly we human beings are and how funny everything is, or can be if you look at it with the right perspective. That may sound, again, touchy feely, but without a sense of humor, without laughter, what is there? Besides music, of course.

This kind of thinking may have influenced me to have an even better time in CA than I would have, but I’ll never be able to go back and compare frames of mind - wouldn’t that be incredible? So that was my mindset when I got back to Boston and called my Oncologist to find out the results of my MRI and PET Scan. I expected them to find more cancer. But that’s not what happened.

My doctor told me they couldn’t see anymore cancer in the scans - as I said it needs to be a centimeter in diameter to show up at all - but that they’d like to go ahead with an aggressive chemotherapy treatment to make absolutely sure we halted any possible burgeoning polyps. Amazing. I felt as though I’d been given a stay of execution.

california in brief with many photos

I love walking around San Francisco, relatively aimlessly, up and up and up. We only intended to stay one night and drive down to Carmel, but that was when the plan was to be in San Jose. Nothing against San Jose, but I don’t know much about it.

So we wandered a bit after breakfast, found a great side neighborhood (my favorite thing) and decided to stay one more night. The only bad meal we had was dinner that first night in SF. And when I say bad I mean only so-so food and entirely overpriced. But the rest of our meals were uniformly fantastic.

Here’s two shots, one of the side neighborhood and one from it looking East toward the Bay Bridge and Coit Tower on Telegraph Hill.

side neighborhoodview from side neighborhood

On our second day in San Francisco, inspired by the above photo, we walked up to Telegraph Hill and visited Coit Tower, which boasts impressive 360 degree views of the city. And I did see a few of the parrots fly by, which was a thrill.

(as always, click on any of these to see full size)

view from coit tower 2 view from coit tower 1 floor of coit tower

Bet you didn’t know the floor of Coit Tower is red. Personally, I’m constantly surprised how lazy people are and how easily they just spit their gum out when they’re done with it no matter where they are. Nasty.

roo at coit tower coit tower parking view from coit tower 3

We then rented a car and drove down to Carmel, stopping in Monterey to take a few more pictures and eat an early supper of California tapas. I love happy hour.

monterey bayglam-shot-monterey-bay.JPG

Then it was only a few miles to our hotel, but we ran into some v. cool fog coming down the mountain…

cool fog

Our room had a fireplace so Todd made sure to get a fire going right away. I see spooky faces in this, do you?

fire

The next day we had brunch in downtown Carmel and then hiked in Point Lobos State Reserve. It’s a great park - last time we were there we shot a lot of footage of the sea lions. They’re so damn cute.

self portrait of us in point lobos todd in shire self-portrait-point-lobos.JPG

There was a cool overturned tree w/root system that allowed us to pose inside:

us in tree trunk
and we’re calling the one below the Vanity Fair photo shoot…

vanity fair

The next day we took on Big Sur. Stopped at Bixby Bridge on the way for the photo op and wow, were we lucky with the sunlight.

roo and todd at bixby

roo at bixby
roo at bixby 2

I love the redwoods.

redwood

Big Sur was amazing. WHY I chose the most “rugged” of the hiking paths, I know not. Perhaps I like a challenge. We ended up hiking for 3 hours, lost the trail at one point and then we went up a series of steep switchbacks to get to the top.

switchback

hawk

This was just 3 days past a month out from the surgery to remove my tumor. I felt good, I felt strong. It was very life-affirming, if I may be so touchy-feely.

from the top
The drive back up Highway 1 was sure purty too…
ca mountains on hwy 1

And before I forget, here’s a shot from our room’s deck and a shot from where we had breakfast in the hotel.

view from room’s deck from hotel deck

And that was about it. We left the next morning and drove up to San Jose. There was even time to visit a friend of Todd’s at Apple HQ in Cupertino, so we geeked out a bit, which was fun. All in all, a great vacation.

disaster averted

Ok, the Apria nurse came and properly hooked me back up to my chemo and he’ll be back later this afternoon. There were a number of things that could have made this worse, but none of them happened, so I am lucky once again. I don’t feel particularly lucky, but I know I am.

setback or mere annoyance?

(Note: for the sake of catch-up I’ve been posting with older dates, but this episode I’m describing here happened May 9)

Well, much as I try to see the bright side I guess it’s not always possible. Maybe I just can’t see beyond my annoyance, but I woke up this morning and my home IV pump had come detached. I had chemo drugs and blood on my chest, my shirt, the sheets and Todd’s new, expensive king size mattress. Go figure I had removed the mattress pad to wash it, but as yet have not done so, therefore I’ve ruined any replacement warranty because all that crap has stained the mattress. Argh!! I must look up how to clean it. Martha, I need your help!

Now I’m waiting for the nurse from Apria to come early (one was set to come over at 1:45PM today to unhook me) and find out if I need to be re-attached, if I can be reattached at home or if I have to be driven all the way back to Beth Israel (BIDMC) to complete this cycle. Yes, a frustrating morning altogether and it all started at 5:50AM.

I do not expect you’ll know what I’m talking about right now if you’ve only been following my blog because I’m insanely behind here. Essentially I’ve been on chemo now for 2 months - I go to the BIDMC every other Monday where they hook me up to an IV drip and get a total of 5 bags of drugs pumped into the portable catheter (porta-cath) that was surgically implanted in my chest. I’ll go back and give more details on all of that eventually, but anyway, after 4-5 hours of drug drip at the hospital I am sent home w/a portable pump that gives me another drug for 46 hours. A nurse from the company that supplies the pump (Apria) comes out to wherever I will be at that point to unhook me.

Sometime in the middle of the night the porta-cath line became detached. I shouldn’t be surprised. This week everything was different: my nurse at the therapy center at BIDMC was on vacation and the nurse who was subbing put the IV in differently *and* wrapped the tape around the connection wrong - it was too late to show her how Apria likes it done - and, AND they really screwed up on Monday anyhow making me wait over 2 hours past my scheduled time because they didn’t realize I wasn’t meeting with my doctor that day. Arrgh! again.

I’m just feeling impatient and annoyed and stupid and could easily have just written this in my journal, but here I am, I type faster than I handwrite. Sad to realize since I’m such a pen and paper fan.

goin’ to california

After much deliberation and discussion about possible tropical vacation destinations, since we’ve never done that before - including Bermuda (only in the 60s, not warm enough!), the Bahamas (the only island in which I had any interest was booked) and Florida (realized it was Spring Break (no thanks!!) which explained why everything was booked) - we chose Carmel, CA. My friend Eric got married out there in 2000 and we had such a great time, so why not? We booked a “cabin” at the Highland Inn where they had their wedding.

We were scheduled to leave Wednesday (3/14 - now you can see how behind I am w/this blog!!), the day after my PET scan. I probably should have used my Tuesday evening more wisely and packed more thoroughly, but that was not the main reason we missed our Jet Blue flight to San Jose. We left with plenty of time to catch that flight, but there was a tractor trailer overturned on 93 and they completely re-routed the highways making it impossible to make our flight. I did call Jet Blue from the cab to let them know.

We made it to the airport in time to run to the jetway and get on our plane, but our suitcases would have to fly in the next day. I said no - there’s only 2 flights per day from Boston to San Jose (and vice versa) and we didn’t have a hotel booked or anything yet. I hate being w/out my stuff. Fine, maybe I’m a prima donna. But Jet Blue was supremely understanding. They put us a flight to Oakland instead that left three hours later; they didn’t charge us for the difference in flight price and didn’t charge us for switching our tickets and it’s mostly because we showed up at the airport.

As per usual I tried to see the bright side of this turn of events. Since we were now flying into Oakland I called and booked a room at the same hotel we stayed when we visited San Francisco in 2004. It’s the hotel from which Todd took the photo that became the cover for Way Back Down, looking down on Ellis Street. YAY, I love SF!!

This terminal of the airport housed a Legal Sea Foods so we had a yumma-licious meal and then got on our flight. It was my first experience with Jet Blue and I must recommend it. Leg room aplenty and satellite TV. I watched so much Animal Planet and Food Network I barely napped. My only complaint was that the overseat lights were way too bright and diffused. I’d suggest they make them more directional so that when you turn on your light the three to six seats around you aren’t also blinded.

Arrived in Oakland at around midnight and got a car to drive us to SF. We chatted with the desk clerk at the hotel and showed him our album cover. He decided to give us the Dashiell Hammett suite at no extra cost - apparently Mr. Hammett frequented this hotel, even did a lot of his writing there, so they have a room that’s half museum / half hotel room. They’ve appointed it with his actual things: a coat rack w/coat, a desk complete with old typewriter and magnifying glass and pens, an old standing ashtray. It was interesting although a bit musty. Still managed to pass out nicely after such a long travel day.

dashiell hammet room desk beds in dashiell hammett room

contrast drinks and belly aches

My PET scan was the following Tuesday at 11:30AM. I was asked not to eat or drink anything after 11:30PM the night before. Had to get there at 9:30AM so they could give me the first drink. This one was like extra greasy wintergreen water - I’m surprised Smart Water or Poland Spring hasn’t come out with this flavor. The tech suggested I guzzle it because he considered it the nastiest. I gulped it down in two big sips (I didn’t actually mind it), waited 2 hours and was moved into a private room where they gave me a “Berry Smoothie” contrast drink that was chalky and sweet and more what I would expect from a contrast drink, and said I’d be waiting another hour. This private room was like a big closet with a comfy chair (”the comfy chair?!!! the comfy chair?!?!!” Any Monty Python fans out there?) and a radio. I sat there and wrote and listened to NPR.

The test itself involved another big, white tubular contraption and a slab for me to lie on. Just before I went in they asked me to make sure I didn’t need to pee first. I always have to pee, so no problem there, however as I started down the hall I realized I must have stood up too fast. I got lightheaded and had to hold onto the wall as my vision faded ala “Looney Tunes” and then faded back up. “The donger need food!!”

ANYway… the test itself wasn’t so bad; I wasn’t asked to hold my breath and they had some nice hummy surface noise going on so I half napped and half laid there just thinkin’. The only real annoyance during the test was that, again, I was asked to lay my arms over my head. The test was 30 minutes and my hands, getting very little blood circulation, fell asleep. Same thing happened with the MRI, but it was shorter.

The worst part of the test was afterwards. After not eating for so long and having to drink these bizarre contrast drinks, my belly was telling me how unhappy it was. I was forced to find a public restroom for a pitstop on my way home. Fortunately, because I am she-of-the-tiny-bladder, I have most neighborhoods’ public restrooms mapped out in my head in case of emergencies. So, I must apologize to REI, but also thank them for allowing me to avail myself of their plumbing. It wasn’t a friendly visit (possibly morbid, Mel!), but I did feel better afterwards, although decidedly quite dehydrated.

The weirdest part of the day was when I got home. I walked in my apartment and was struck by how hot it was. Despite the fact that I live in an attic apartment and it always gets pretty hot when it’s sunny and warm out, which it certainly was that day, the heat that greeted me was extraordinary. I checked the thermostat and it was set to 90 degrees!! Each time I manually lowered the temp setting it jumped back up on it’s own. Argle bargle!! I turned it off, left a message for my landlord and passed out on the bed w/my cat. When my landlord made it upstairs the thermostat had corrected itself so this episode is still a mystery.

The saddest part of the day was having to cancel my plans to have a nice supper w/my friends Tony and Sean. I was just so exhausted and still had such a belly ache that the idea of any food was unappetizing to say the least. I hate to waste food, especially if it’s tasty and expensive food and I hadn’t seen Tony and Sean in some time. Oh well. Fortunately they are understanding friends.

soundtrack to a videogame

After the appointment with the Oncologist, and understanding that I would have to endure six months of chemotherapy, Todd and I decided to go to our favorite restaurant for dinner. We discussed the idea of taking a short vacation before the chemo was to commence. We hadn’t been on a real vacation since 2004 and Todd thought it would do me good.

I wasn’t sure about it, possibly because I was so overwhelmed with all the news I had received. But the idea was now in my head and it began to marinate…

As far as the tests they still needed me to take, they scheduled my MRI for 8:30 that Friday night (the PET scan was schedule for the following Tuesday morning). Woo hoo!! Friday night par-tay in Radiation. I don’t know ’bout you, but I sure thought that was strange time to be getting examined. I felt bad for the techs who had to work that night - they told me they didn’t get out of work till 11PM and had been there since 7AM. Hell, someone’s always got it worse than you, right?

Oh and here’s a couple shots of me lookin’ healthy the day of my MRI, which was March 9th, my best friend Melissa’s birthday.

healthy girl? healthy me

We had a hard time finding the right building, but once we did I signed in and put on my hospital gown. Gettin’ a little too used to those for my taste, but what can I do?

I’d never had an MRI before, but was told it can be a claustrophobic experience. They put an IV in my arm (another thing I was getting used to, but not enjoying), moved me into the lab and laid me down on this padded slab in front of a very “2001: A Space Odyssey”-looking machine. The machine itself was white and massive, but the little tube-like slot where they’d be moving the slab (with me on it) was tiny. I wasn’t sure I’d even fit. What do they do with folks of larger stature, say?

The test was to last 20 minutes. They gave me earplugs telling me it can get pretty loud, had me lay my arms above my head and placed a little squeeze ball in my right hand. I was to squeeze this ball if I felt panicky at any point. Then they moved me in.

I can totally understand why someone might experience claustrophobia in this contraption. My face was probably 4 inches from the ceiling once I was in and they moved me farther in a few more times and with each move I was closer to the ceiling. A disembodied woman’s voice (the technician on the other side of the glass) asked me how I was, I said I was ok. She explained that she’d be asking me to breathe in and out and then to hold my breath until she said to breathe again.

So this was the test: “Breathe out. Breathe in. Breathe out…. Stop breathing.” Ten to twenty seconds would pass. “Breathe.” No problem. Then the noises started. I understand from talking to other people who’ve had MRIs that they were nerved out by the noise, but I just found them hilarious. They were so loud and sounded so much like space battle video game noises AND they were all so varied. With each “stop breathing” I’d get a new noise and they were loud as hell. I closed my eyes and tried to figure out from which game each noise was borrowed. Asteroids, Qbert, Road Blaster, Centipede; it was immensely amusing to me.

Twenty minutes or so and I was done. They rolled me out, I put my clothes back on and we were off to enjoy the rest of our Friday night. It was definitely my favorite (a/k/a least annoying) test so far. That, and the fact I wasn’t made to drink any of those bizarro contrast drinks beforehand. Those are the worst.

lucky girl

Unlike some people, I didn’t do a lot of research online about my cancer. It was partially because I have some hypochondriac tendencies so why feed that fire? And anyway, everyone reacts to… well, everything, but this experience and chemo, differently. I didn’t want my reactions to be informed by what I’ve read. I want them to be pure and honest, if I may be so hippydippy.

I met with an Oncologist at Beth Israel for an examination and evaluation. He went over the chemotherapy treatment they felt would suit me best. As I said, I didn’t do any research and knew very little about cancer before this. He let me know that once I had an MRI and PET scan they would have a better handle on how far the cancer had spread, if at all. He explained, in medical terms, what it means for cancer to metastasize and then he asked me if I understood. I said, “I think you’re telling me that if you find cancer in my liver (a spot they’re concerned about) then it’s in my blood and is ‘uncurable.’ You’ll be able to keep it at bay with more chemotherapy, but it will likely continue to move around my body until it kills me.” I could see he was startled by my bluntness, but why mince words?

And no, until that meeting I didn’t know what it meant for cancer to metastasize. You learn something new every day.  At least I do, you probably knew all that already. But did you know they can’t see cancer cells in any of their tests unless it’s at least a centimeter in diameter? Interesting.

The doctor said they’d like to go ahead and attack the cancer aggressively and start with six months of chemotherapy at two sessions per month. Since I hadn’t read much about cancer I wasn’t sure if six months was a lot or a little. Six months. Huhn. Time to make sure about disability, eh?

I am lucky to have disability insurance at work. I’ve been on short-term disability (STD) since February, (my last day at work was February 9th. This is the longest I’ve been out of work since my first semester of college!) but it only lasts three months. I think I thought I’d be back at work by now - silly me - and now I’m dealing with applying for long-term disability (LTD).

I am lucky in so many ways it’s ridiculous. (You’re saying, ‘uh, what? Dude, you have cancer; not so lucky.’ But I am.) I have good health insurance (we’ll see just how good once the bills start arriving) and my parents want to help pay what insurance doesn’t cover. They are also helping me with my rent.

And not only do they care a lot, they’re smart. The other night I called to let them know I hoped to get back to the office in June and was considering not bothering with the LTD. My mom was quick to tell me what a bad idea that was. She also suggested I find a lawyer to help me go over everything because, she’s right, I don’t know what I’m doing. Oh, and send her the bill, she says. You tell me I’m not lucky, I dare you.

Back to the chemo stuff. The plan included surgical implantation of a portable catheter (portacath) in my chest about 3 inches or so below my shoulder. It would connect directly to a main vein and they’d simply stick the IV needle in and give me the chemo drugs without the trouble of setting a new IV in my arm each time. I’d visit the treatment center for my chemotherapy every other week and be infused for 3-4 hours with three different drugs. Then I’d be sent home with a portable pump and drug drip that administered a fourth drug for 46 continuous hours. I’d carry the battery-operated pump and drip bag with me everywhere in a vinyl bag. The wonders of modern medicine, eh?! So bizarre.

Right.

After essentially getting a second opinion that agreed with this course of therapy I decided to go with the doctor at Beth Israel. I would have the portacath surgery on March 23rd and start chemo the following Monday. The MRI and a PET scan got scheduled and between those and the surgery I had under two weeks of ‘freedom.’