Sunday, October 31, 2010

Chutes and Ladders

Bendamustine has given me quite a ride over the past three weeks. Despite being just a one-drug cocktail, it packs a punch. Kind of like the effects of drinking jungle juice made with vodka vs. grain alcohol. The latter is never a good idea. But unfortunately, I don't have a choice in this matter. If I did, I would choose straight up Hi-C.

Week 1: lukewarm hell – the debilitating fatigue, head fogginess, acid reflux, indigestion, constipation, and overwhelming malaise left me to do nothing but float around the house like a groaning blob.

Week 2: better, much better. I started to get out and about again and the gloomy skies started to clear. All systems were once again a go. Lots of hikes. Lots of lunch dates and outings. Miss cocky pants probably pushed herself too much with all the renewed energy I had.

Week 3: down again. It was expected that my blood counts/immunity would drop around this time, but the weekly CBC checks never revealed a plummet. No transfusions were needed. I guess this means my bone marrow still has steady cell building power. Maybe it was my marrow in overdrive that sent me into a bad place this week. I felt the familiar swelling in my chest. It is like having an elephant inside of my chest – not one sitting on it like I'm about to have a heart attack, rather one becoming painfully large within it. I could tell that the elephant was not happy in this constrained space.

It was tough to take deep breaths, I'd often get dizzy, and a deep cough crept in, especially when I laid down. My heart was also pumping extra hard. I could feel it push the blood through my ears loudly anytime I tried to lay down and rest. A lymph node on my left collarbone waxed and waned in size, especially if I pushed myself too much. This scared me because the feelings were all too familiar. They are the same ones I've felt every time a recurrence of the cancer has crept in ... and the trend has been for this to happen near the one month mark.

I had daily talks with my nurse practitioner (aka "bestie") at Sloan and laid very low. I diligently took my temperature and did a lot of yoga and visualizations of a chest cavity filled only with bright, white light, not damaged DNA replicating all over itself. This fear of recurrence led to a lot of anxiety, leading to chest tightness on top of the fullness, making it hard to distinguish what was going on.

I had a couple of rough mental and emotional days and a lot of nightmares. One night I was a complete wreck and tried to explain to Craig that I just wanted to take a pumpkin carving scraper to my insides. I wanted to go in and just scrape out everything growing inside of me until I was left with a heap of stringy, orange slop. He gave me a warm washcloth, instructing me to wash my face with it and stayed with me until the screaming sobs ceased.

Week 4: I'm entering this final recovery week feeling comme ci, comme ça. Neutral? The big positive is that the chest fullness is gone. The prominent lymph nodes on my collarbone and up and down my neck have at least stabilized. The cough is gone and my breathing is much improved. I'm looking forward to telling my nurse, Brynn, that things have improved. Oddly, it was after a night outside in the frigid wind at a UConn football game tailgate that I felt remarkably better. Maybe a prolonged shot of fresh air, a glittery pumpkin sticker for my cheek, and a cup of hot, hard cider is an ancient remedy of some kind – put that in the clinical trial notes. Maybe what I was feeling was a strange bug, or allergies, or paranoia. One of the struggles of being a cancer patient is to remember that I am also still a human and to not always jump to the conclusion that everything is related to cancer activity. A little post nasal drip shouldn't cause me to start making funeral arrangements.

It's been a game of Chutes and Ladders. I feel like I've climbed a few ladders and made some progress, but unfortunately the chutes have been fast and windy. This Thursday my little plastic playing piece with the pigtails, plaid skirt, and knee socks will be back at the "Start" space to begin the adventure all over again with Bendamustine round 2. At least this time I'm prepared for how high up and how low down the side effect game may take me.

Tuesday, October 26, 2010

Affairs of the Hair

I hit a major milestone last week. I got my hair cut. I'm defining the word "cut" liberally here, but I did actually go to a salon, get my hair washed and shaped. It was quite a different experience than my old days of my long hair being slathered in goop then folded into pieces of tinfoil all around my head, long periods of time spent under the dryer with a magazine ... and all of that before the cut even started. But it still had all of the relaxing benefits time at the salon can provide. It was a very proud moment for me and my hair follicles.

I have completely lost my hair and grown it back, twice. It's gone from bald to stubbly to scruff and all of the stages in between several times over. But this has been the first time since all of this began that it's grown back enough to warrant a shape and to almost, almost pass as an intentionally cut hairstyle. I was just about there around Christmastime last year and was able to style a mini faux hawk but that all ended with my first shocking relapse and is quickly as it grew in, it was that quickly gone again.

Entering the salon, I was wary. My stylist had most certainly thought I "broke up" with her long ago as I hadn't been back in 15 months. Granted I've broken up with many a stylist in the past but I really loved her. I didn't know how I was going to broach the subject of my absence: "It wasn't you, it was me ... " wasn't exactly apropos. Plus, I look like a completely different person since last time she saw me.

Turns out that wasn't a worry. The salon had made a donation to the golf fundraiser our friends put on for us and the day before, the local paper had arrived which contained a post-event story and included a detailed account of my cancer journey. She knew everything before I had to say anything. No need to break the awkward ice.

Before we started hair talk, she pulled out a stool and sat right across from me and told me just how stunned she was as her eyes welled. She's only a few years older than me. She had read theSimsbury Life article, saw my name on her schedule and looked back realizing that in fact the last time she saw me was in May 2009, the same month the article indicated I was diagnosed in. I explained that yes, just one week after I saw her for a cut and full highlight I was diagnosed with cancer. Two weeks after, I shaved my head. The tears that filled her eyes said everything then she popped back with: "Well, I've worked with post-chemo hair many times before ... and don't worry, you're hair will calm back down again."

My hair had started to creep into a clown wig style fro. After a recent doctor visit when I had to face a mirror while waiting for the doctor to enter the room, I explained to Craig: "If Lionel Richie and Justin Timberlake had a love child, this is what its hair would look like."

On humid days especially, the super tight curls were getting out of control. They didn't bother me on the top so much, but I had no idea how to tame the sides. The curls were even creeping down the back of my neck creating something beginning to resemble a kinky mullet – frightening. I needed help. I adore ringlets on other women, I've just never before had to maintain these sprouted objects. Well, except for that bad spiral perm circa '92.

With that mission in mind she started by washing my hair, which felt so, so nice, especially the head massage she gave me while rubbing in the conditioner. Then out came the scissors and the buzzer. It was a bit saddening watching the little ringlets of hair fall to the floor after they had worked so hard to sprout. In early July I was completely and utterly bald, including eyelashes and eyebrows. It amazes me to think about the progress made in just over three months and no matter how differently it grew back, I love every strand of it.

She shaped my sides and taught me how to use a wax to style it and to tousle the curly beast on top. I actually got choked up when she gave me a hand mirror to hold and spun my chair around to view my new style from 360 degrees. To an outsider the change was subtle, but to me, it made a huge difference. I didn't look like a post-chemo patient. I looked like a chic, hip, modern woman.

"It looks almost like I did this on purpose," I said, smiling.

She laughed and agreed that we are getting there. She didn't charge me for the cut. That got me really emotional and I gave her a big hug.

I walked into our front door at home completely beaming.

"Wow, what are you so happy about?" says Craig, not noticing the before and after difference. This is the same result I'd get after two hours in the salon chair and it made me laugh.

Months back Craig said to me: "I don't even notice that you are bald. I don't notice your hair. I just look at you and see you." I do my best to do the same. I think this is why I haven't worn my wig since the cruise we took late June. It's just not me and I can't get comfortable with it. But for that time and those moments it was right.

I can't get too used to this current look though. I will lose my hair yet again with the next transplant. But for now, it looks, dare I say it, cute. However, I've lost my eyelashes again and my eyebrows are barely hanging on as a result of the Bendamustine, but beggars can't be choosers. When this is all over I could care less whether I'm left permanently hairless or having developed Werewolf Syndrome if it means I'm still here.

Hair – A Retrospective of the Past Three Years:

Saturday, October 23, 2010

A Lone Journey

When I found out that the allo transplant had been postponed at the end of September and that I'd have to endure yet another chemotherapy course, I had to get away. I wanted to go away by myself. I wanted to be completely anonymous. I wanted to go to a place where no one knew about the cancer that was yet again multiplying in my lymphatic system.

I also wanted to prove to myself that I was still capable, independent, and competent. I wanted the companionship of me and only me. I didn't want to have to talk about anything, to slow any one down or to have to do what anyone else wanted. Anonymity and privacy are hard to find as a cancer patient when you're constantly prodded in every sense of the word.

After I convinced my parents and husband that I wasn't going to off myself, and no, I wasn't going alone because I didn't enjoy their companionship, I went away. Wistfully I thought about hopping a plane to Paris or San Diego, but more practically, I chose my old stomping grounds on the campus of UNH in Durham. As much as I wanted to prove I still had it, I knew that I didn't fully have it together. My mind was pretty fuzzy and overwhelmed with this new development and I certainly wasn't feeling at the pique of physical shape. If it weren't for the course of steroids I had just started, this inflated sense of confidence probably wouldn't have manifested. So I stuck with the familiar.

I booked a room for one at a bed and breakfast in Portsmouth on the seacoast just 15 minutes away from campus. Portsmouth is easily one of my favorite places in the world. I used to escape there often while in college and for two years nannied for three adorable kids there. We'd take walks from their house into the downtown together to get ice cream or their favorite cinnamony baked treats after a day at The Children's Museum. One in the carriage. One riding the back of it and the oldest by my side.

The drive up was extremely liberating – 3-and-a-half hours of windows down, sunroof open concerts of everything from Kenny Chesney to the Rent soundtrack. It had been six years since I'd been back. But before this long gap, I made the trek from Connecticut to New Hampshire many, many, many times before, traveling at crazy hours back and forth to UConn where Craig was at school, surprising him late at night then leaving painfully early in the morning to make it back to the UNH campus for Lester Fisher's 8 a.m. Black Literature course. If you were 10 seconds late, the door was shut and locked. I narrowly squeaked in on several occasions.

Not much about the ride had changed. I-495 is very long and still under construction, not much to my surprise. The toll charges had risen a few cents and the I-90 on-ramp was as painfully packed as ever. My car probably could have driven itself there. Muscle memory, I suppose?

I got very excited when I crossed the first bridge over New Hampshire seacoast waters. There are two bridges crossed on the way into Durham after finally exiting the succession of freeways. Theses bridges bring back so many good memories. Just like I remembered, there were sail boats passing under and kids and their Dads dangling fishing poles over the edge.

I took the back way into campus so as to pass by our senior year apartment: one of many within a big, historic (maybe a little decrepit) red house. Oh, we loved that place. We even had a little first floor porch to go with our crusty kitchen and shower stall so small you had to stick your rear out the curtain to be able to pick up a dropped bar of soap as there wasn't enough clearance to bend over.

I found a street spot at the center of campus, pulled in and said out loud to the steering wheel: "I made it." Then I just wandered and reminisced amidst the college kids playing ultimate Frisbee or sprawled out studying on the great lawns. There was a warm sun shining and not one cloud in the sky – a day that even made college kids get out of bed before 11 a.m. on a Saturday.

I loved being back as an alum. I checked out the huge hockey rink where I used to play Broomball (hockey with a ball and a "broom" played while wearing sneakers and skidding across the ice). I walked all the way to the UNH Dairy Bar on the far end of campus for a milkshake. It was completely different and they don't even make their own ice cream anymore – instead, it comes from a local creamery. That doesn't mean I passed it up, however.

Sipping chocolate cookie monster through my wide straw, I meandered back through the heart of campus walking old trails and cut-throughs that I used to take. I spent some time on the couch in my favorite room at the Dimond Library with its floor to ceiling windows. Then, it was to visit Hamilton Smith, the building where most all of my English and Journalism classes were taken. I was pleased to see that literally nothing had changed but the bulletin boards with photos of new faculty members and highlighted student work. The Journalism lab was still in the same place and the other classrooms still had the very small, old wooden desks with attached seats and blackboards on the walls. I was jealous reading about upcoming programs, new majors, and internship opportunities.

I checked out the student union, the college newspaper and yearbook offices and then wandered into downtown Durham – the quaintest little place you'll ever see. Our favorite bars were still there, though some had changed names. Same went for the sub and pizza shops. The amazing falafel place was still there and so was Breaking New Grounds coffee shop–a great reading spot, and The Bagelry, a proven cure for the Sunday morning hangover. I couldn't resist popping into Hayden Sports for a UNH hoodie upgrade seeing as mine from 10 years ago is worn to shreds ... and maybe some super cozy sweat pants.

Impressed and proud that I walked the campus length I was exhausted heading back to the car and drove through frat row and out toward Portsmouth. I checked in at the Inn at Strawberry Bank and fell hard into the queen sized canopied bed that I had all to myself waking up two hours later after a glorious nap. I've never stayed overnight by myself somewhere and it felt very chic to say to the inn keeper that "No, it's just me, just wanted to get away," keeping my story very exotic and mysterious. I had made a vow not to mention the "c" word once.

Hungry, I walked through the historic district and ducked into a restaurant called The Common Man. I took a high top table in the bar. The walls were exposed brick and the lighting was very dim. I had a great view of the street. Perfect Saturday night people watching. Meal choice was a quick decision when I saw "crock of lobster mac and cheese". And, Smuttynose IPA bottles (brewed just blocks away) were only $2. It's a very rare occasion that I have a drink nowadays, but I figured this was cause for one, okay, two. The resulting flushed cheeks felt good.

Very full and quite buzzed I wandered through the chilly air, pulling my trench coat belt tight. I walked past the packed Irish pub, the bustling restaurants filled with intimate conversations, lots of groups laughing and stumbling through the lamp lit brick and cobblestone streets. It was both odd and refreshing to be by myself where no one knew who I was. Not ready to curl up back at the inn just yet, I stopped in for an old favorite: a coconut mocha coffee and took in the crowds of teenagers and the whir of conversations among scholars and lovers in the various sunken cushioned couch arrangements.

When I got back to the inn I smiled at a car parked in the driveway adorned with "Just Married" paraphernalia, including the shaving cream message: "Now make more babies!" I didn't see anyone that looked like newlyweds the next morning at breakfast ... I guess they never made it downstairs. With my coffee and a page turner I read for hours listening from my bed to an acoustic singer performing with his guitar on a roof bar blocks away. I slept lightly and discontented but slept nonetheless.

After a hearty breakfast with the New Hampshire Sunday papers and some window shopping through the quaint stores and galleries of downtown Portsmouth it was back on the road. First I took a quick detour 10 minutes north to the Kittery, Maine outlets but after stopping in one store and enduring all of the tourist traffic it took to accomplish that, I was done. Way too overwhelming. The drive home was much less exciting than the drive up. It was very cold and I was very tired and feeling progressively worse. Bad choice on the two beers. Plus, the warm pancakes and fresh fruit-filled hot oatmeal of the morning had forced me into a food coma and I was groggy and grumpy to have to hand in my room key.

With the help of some NPR talk shows and the highway-side foliage I made it back home. The closer I got, the progressively angrier I got as the realities of everything began tumbling back into focus. When I pulled in I immediately crawled into my own bed where I had a real sleep and came to the conclusion that this is the best place for healing to be done. As rough as the difficult parts in my life are, the wonderful parts are that much more pronounced. As proud as I was of myself and as much as I enjoyed my little independent escape, it felt so good when Craig walked in the door and we cuddled in with Sam to watch Sunday night football. Maybe it took getting away to appreciate that I have nothing to hide from.

Monday, October 18, 2010

Time Passing/Passing Time

I have all of this time ahead of me until the next treatment: Nov. 4. That's two-and-a-half weeks. This is liberating and exciting, but also overwhelming and frustrating. You may think that having a lot of time on my hands would leave me free to get so much done – reorganize the closet, untangle all of my necklaces, label all of my digital photos, back up my hard drive – but somehow that just doesn't happen. I am not working. My doctor's appointments are currently once per week. I don't have children to take care of. But somehow, other things tend to fill my days but I can't really tell you what those things are.

Every day I am shocked at how quickly 4pm rolls around and nighttime routine starts. I'm the kind of person who likes to be busy and productive, but I am also a person has been going through cancer treatment for nearly 18 months nonstop and am therefore very tired and very unfocused. In comes the frustration. Everything takes me a lot longer than it ever used to and I am easily flustered. I want to accomplish everything and nothing all at once and just thinking about that makes me want to take a nap. Then I'm groggy and angry that I napped and the whole cycle starts over.

I spend a lot of time outside reading or have the laptop out playing around on the world wide web out on the porch. I find all of these things that I should be doing: volunteering, writing a manuscript, researching book agents, improving my graphic and web design skills, brushing up on correct punctuation use, applying to graduate school ... but then I walk away and do none of them.

I do hike/walk every day and go to the yoga studio every morning that it works out. So that accounts for some time. I've gotten more into cooking and baking, which is rewarding, but I could probably win the "slowest chef award" as I have to read recipes over and over out loud to myself as I walk through each step. I never turn the TV on during the day unless nap time falls around 4pm and I'll flip between Ellen and Oprah as I doze off.

There are of course the choice days that are very productive. It feels good when the "to deal with" pile of mail is all dealt with or the laundry is finally put away. I haven't had one of these days in a while ... . Our walk-in closet that Craig built for me last year looks like it vomited its innards all over itself and I can't blame him at all. I am still living out of three different sized suitcases still packed from three different stays at different places for different lengths of time. The laundry baskets are full of clean and folded clothes which I retrieve from each day as they haven't made it up to the shelves yet.

People ask me: so what did you do today or what's on the agenda for tomorrow? This is a perfectly normal thing to ask but often I'm embarrassed when I don't have an answer. Either I can't remember what I did or when I do tell the two things that happened it sounds ridiculous when it actually comes out: "I went for a hike with Craig and Sammy and I baked an apple tart." And, I'm not really sure what happened around that. The answer probably is that I took out all of the ingredients to bake something else, couldn't find something and got mad, then walked away and opened one of the three books I have going at once only to fall asleep by accident, then decide to throw the tennis ball for Sammy, then started writing thank you cards only to realize that it was way too overwhelming for that moment and instead turned on iTunes and started singing at the top of my lungs while flipping through Natural Health magazine. This is why I appreciate visits with my friends and family so much when I am up to it – breaths of fresh air!

When I'm gearing up for the next treatment my real to-do lists get long and the productivity level gets higher but without the pressure of a "deadline" it's easy to let the days slip past. To combat this I make lists of goals. Some of those goals have been transferred from list to list for many, many months now. (i.e. painting the nine small canvases I bought to make an original piece of artwork for our bedroom .... I have bought the paint. Or, teach myself how to play the guitar ... I've gotten as far as having it restrung and tuned ... .)

I hate to break it to the world but more time doesn't solve the problem of getting things done. It's all about you just making it happen. There is something to be said for structure. And when you stupid don't feel well all of the time that only complicates things. Fatigue is a very real and very, very irking side effect of chemo. I hate reading that it's one that'll likely stick with me for life. It's guaranteed that I if I go out too hard early in the day then I'm shot in the evening. So if I have evening plans I have to be real careful not to overdue it, lest premature ejaculation.

I think part of the non-accomplishment is an odd mental game. I subconsciously worry that if I do everything on my to-do list then I won't have anything to do. Even though I'm not a working professional at the moment, it's like I create a world where I have all of these looming projects so that I can feel like I have a purpose. When in fact, I could probably cross all of those projects off my list in a day if I really set my mind to it. But for whatever the reason, it just doesn't happen. I do however make time for super fun things like organizing a book club, pumpkin carving with some besties this week, and Blue Man Group at The Bushnell next. I have no problem working my nap schedule around those "projects."

However it is getting harder and harder to "live each day to the fullest" and all of that jazz when I'm running on empty. I have a small fuel tank right now. As a cancer patient – really for everyone – we don't know how many days we have left. I find this tremendous pressure in trying to fill those days with the "right" things and my idea of what that means fluctuates so much. It's a constant internal battle. I don't want to waste a day, but sometimes I am just a waste. Again, the frustration comes in. It takes a lot of work just focusing on eating right, exercising, and training myself to wrap my mind around everything that is happening to me without exploding.

I know this is a self-inflicted pressure. I know that I need to work on being content, but what do I do with these ants in my pants? I long to be more like the Italians who reportedly relish in the sweet art of doing nothing – a past time held with the highest regard. Why can't I just accept how fortunate I am to have the luxury that is time to spare? I will try blasting operatic arias while nibbling hard cheese and stuffed olives. Maybe the secret will appear in a loaf of crusty bread.

Wednesday, October 13, 2010

Bendamustine Treatment One

The next part of the adventure has started. It was a whirlwind of travel, logistics, appointments, infusions, and some fun mixed in. Now I am back home and it's all setting in hardcore. I've attempted to write for many days but it has simply been too difficult. My brain was softened to potato mash. Finally I'm starting to feel close to myself again. Just when I didn't think I was going to pull out of it the light started to shine through. I'm astonished every time this happens. This is now the 18th chemotherapy drug my body has been subjected to and nearly the 40th infusion it's bounced back from. The recovery seems to be a little longer and a little slower with each time but together we get there.

The Bendamustine recovery required a lot of sleep. I was asleep more than I was awake over the past four days. If I wasn't sleeping I was zoning out at the ridiculous television, or at nothing at all. I've been sleeping 11-12 hour nights on top of all of that napping. But it did the trick. I had to shut down before I could start back up. That does not mean I enjoyed it. I've been crabby, angry, irritable and unstable. My husband deserves a medal. But I think it's getting better now. Today, Craig and I were able to go for a 90-minute walk in the woods and even got to Trader Joe's to stock-up on goods. It was a very welcome change and I was happy not to miss another day of these incredible blue skies and the fiery foliage painters swoon for. Things are not perfect by any means, but it's a stark contrast from the helpless, bitter Karin of just days ago.

We left for the Big Apple last Wednesday and had our first stay at the Miracle House apartments. The apartment building really is quite swanky. The door men and women are white gloved and extremely friendly. Each morning there is a bowl of fresh fruit and coffee for residents to grab on the go. Craig took advantage of the gym and there's also a relaxing theater, lounge with billiards, laundry room, and a pool. Though the Miracle House residents don't pay the $5,000/month price tag, we still get to take advantage of all the building's facilities.

We shared our particular apartment with two other couples – one from California and the other from Vermont. Each of the women were also cancer patients. They were all so incredibly easy to get along with, respectful, helpful, assuring ... I suppose everything that the whole nonprofit is set up for. We could all instantly relate to each other and be there to support each other's treatment adventures and doctor's appointments during the days we spent together. We shared a lot of laughs and insights.

Our room was modest but had everything we needed. However, sleeping through the honking cars and blaring sirens of Manhattan was tough to get used to. And as Dorothy says, "there's no place like home." This is most definitely true when you're facing daunting days of treatments and procedures. But we made the most of it and took advantage of both a group dinner and a breakfast at the Pom Pom Diner just a couple of blocks away. A Miracle House volunteer met us and others staying in the apartments to treat us for the meals and give the chance to find some friendship amidst all the chaos we're all experiencing. The portions were large and their contents hot and buttery – good for the stomach and the soul. We were all of different ages and backgrounds. We talked about music. About our dogs. About where we're from. A little baseball. A little real estate. The treatment/illness talk certainly did not dominate, and when it came up it was brief and the empathy around the table was palpable.

Wednesday featured a baseline CT Scan. That meant another huge serving of tart raspberry chemical contrast, requisite red tongue and all. Thursday morning brought with it both a bone marrow biopsy and my first Bendamustine infusion. It's safe to say that bone marrow biopsies are my least favorite cancer-related activity. It's just plain awful and I was actually quite worked up about it. However, when I signed on for this I knew it was a necessary evil as a baseline for this clinical trial. Every time I've had one, the person performing it has a rough time getting through my "strong bones," various hammers or drills have to be used, and I was awake and aware through the whole thing. Local anesthesia or not, I most certainly feel the pressure of needle jamming into the center of my bone.

I happened to have a bottle of Ativan with me and was more than encouraged by my doctor, the resident and her nurse to take it. I especially liked my nurse Brynn's sentiment: "Shit. We're going to jam a needle into your back and you're going to be wide awake for it. I wouldn't let anyone near me without something to take the edge off." That made me feel like less of a wuss. I also knew that I don't do well with the sound of it all happening, especially if they needed to make use of the bone hammer. They were all totally happy with the idea of me listening to my iPhone while it all went down and were actually disappointed that they couldn't listen to Bob Marley as well.

It was comforting being in the exam room with all incredibly intelligent women. I pulled down my pants to partial moon position and laid on my stomach. Dr. Moskowitz wielded the tools and performed the biopsy while her resident rubbed my back and let me squeeze her hand and Brynn stood at my feet keeping a steady and comforting hand on my calfs which would jerk when the pressure got intense. Again, it wasn't pleasant, but I'd say it was the best experience I've had yet. I think the reggae and the girl talk vs. eerie silence broken by only bone chipping sounds had a lot to do with it.

From there it was on to chemo. Brynn spent time with me explaining the drug, its side effects and such. The usual list. She explained that we'd be "besties" and that I could call her for anything and never feel dumb. She's witty and sarcastic and wicked smart. I bet we will be besties.

Craig and I sat, and sat, and sat some more in the waiting room with dozens of other patients also there for chemo infusions. At Sloan, they do not mix the chemotherapy drugs until the orders come in from the doctor and we were told that takes a minimum of 90 minutes at the pharmacy then tack on whatever the wait ahead of us is. It's an unbelievable operation. The assistants will take your cell number so you can leave and do what you need to do and they'll call you when you're chemo order is filled. Kind of like waiting for an auto mechanic to work on your car – and just as slow.

We had put a bug in Dr. Moskowitz's and the assistant's ear that we had been given tickets to a taping of The Late Show with David Letterman that afternoon with the hopes of possibly being pushed through a little faster but I never thought it would happen. Despite arriving for chemo at 10:45, my name wasn't called until 3 hours later. Craig pleaded the Dave case to the chemo nurse telling her that we had to be at the Ed Sullivan Theater by 3pm or we'd have to forfeit our seats – could we possibly make it (big puppy face)? She replied: "How about I get you out of here in 30 minutes? But, you have to promise to tell me whether he wears a toupee or not. I've always thought that he does."

I loved her instantly, but still had my doubts. Chemo time is never what it seems. But low and behold, the pre-meds were all oral and the drug itself runs over 30 minutes. She had my port unhooked and we were in a cab from the Upper East Side to mid-town after just 35 minutes. After a terrorizing cab ride with the least aggressive cab driver we've ever come across we pulled up to the theater doors at literally 2:57pm. The young guy who gave us the tickets said they close shop at 3pm. If we got there at 3:01 we'd be too late. We were not.

The taping itself was exhilarating. The guests were Stephen Colbert, Johnny Knoxville of Jackass fame, and the band, Gorillaz. It was very cool to see Paul Shaffer and Dave up close and to see the behind-the-scenes workings of a late-night TV taping.

Then it was time to meet with our dear friends Lisa and Seth for dinner Hoboken, New Jersey style. I was probably on a steroid/celeb sighting high because I was never tired. Lisa escorted us from Manhattan on the short, but beautiful ferry ride across the Hudson to the one-square-mile ultra-cool town that is Hoboken. It was great to finally see their place and we were spoiled with a fantastic meal by the talented Chef Seth – including an apple topped ricotta pie – ahhhmazing. We climbed up the fire escape to their roof and took in the crisp night air and stunning views one can only
get among the unique offshoots of the great metropolis that is New York City.

Friday it was up early to trek back to Sloan for Bendamustine day deux. We checked in for the chemo to be ordered then spent the first couple hours of the morning in a park enjoying NYC bagels with strawberry cream cheese until the chemo dinged that it was ready for me. Again, all was finished in just over a half-hour. This is so much better than the five-hour chemo day stints that I've come accustomed to.

Again, on a bit of a steroid high and because we were just a few blocks away, we dropped in our friend Tiff, a college buddy of Craig's and got to catch up, see her fantastic apartment and her most adorable baby girl. I can only hope that my new kinky, curly Justin Timberlake 'do will soon transform into the fantastic soft ringlets of baby Izzy.

After this, it was suddenly nap time for me and Izzy. Both Craig and I passed out hard when we collapsed back on the wheel bottomed twin beds of the Miracle House. Bleary-eyed, but somewhat refreshed after a couple hours slumber we rolled downstairs to the lounge for a photo shoot with some Miracle House staff and volunteers. They asked if they could snap some shots of us for use on their website and in promotional and fundraising materials. Having much experience in nonprofits, fundraising, marketing and the like I know how important the "personal story" is so we made sure to be there for them. Craig and I also appreciated the opportunity to be able to meet more of the MH staff and to thank them for everything that they do. Posing for some pictures on the roof deck was the least we could do to help promote their important message.

It's appropriate that NYC is the "city that never sleeps" as we really didn't do much of it. We were both incredibly overtired, anxious and quite stressed. But, unable to resist the action all around us and thirsty for a diversion, we walked through the droves of Friday night city dwellers packed into the dozens and dozens of restaurants and bars that line the route from Hell's Kitchen to Times Square. The breeze was brisk and the energy of it all was electrifying as we ducked into a comedy club near Broadway to take in the sets of some up-and-comers. Me sipping a virgin pina colada and Craig a hearty Long Island Iced Tea, we drowned the stresses of the past couple of days in some laughs before a meandering 10-block, 3-avenue walk back to our home-away-from-home through the seas of people and lights.

The fun stopped Saturday morning as the Bendamustine spread its poison. Along with it came the worst heart burn and stomach acid of my life. I couldn't eat and I couldn't poop. Everything began to ache. Craig and I took separate trains home – him headed for a much-needed boys adventure and me back to Sloan for a quick Neulasta shot in the arm then to travel to my parents where I proceeded to melt into a blob. My brother was home from school for the long weekend and made me up some scrambled eggs which I force fed myself and sipped the milk that he assured me would soothe my burning chest. He passed out on the recliner and me on the couch as Happy Gilmore blared in the background.

Sunday was just a blur. Its only highlight was picking Sammy up from her days away with Melissa and her chocolate lab Ruby (Sammy's bestie). Sammy was just as tired as me and Craig from all that butt sniffing and bone stealing and the three of us were a pile of zombies cuddled under blankets. The erratic voices of Sunday football announcers took us in and out of sleep. This groaning routine spilled into what was suddenly Monday night football.

I now have three weeks to recover then it's back to New York to do it all over again. Just thinking about it makes me exhausted.

Friday, October 1, 2010

Sidesteppin' It

It's not often that I don't feel incredibly satisfied when I'm right about something. There is a lot of pleasure that can be taken in knowing that you listened to your intuition and it was right. But in this case, I would have been perfectly content and pleasantly surprised to be in the wrong.

It turns out that as my doctors and I suspected, the Hodgkin's is already growing back since I finished up the GND chemotherapy and showed such a great response on that last scan. Apparently a lot happened in my chest over just the last month. It's the growing cancer that was the cause of the incessant fevers, night sweats, chest fulness and overall crappiness. I was not at all surprised. In fact, I laid there, arms overhead and legs strapped down for 25 minutes as the PET Scan machine whirred and I willed for one of two things to happen.

I spoke in my head over and over to whomever might have some control in all of this:

"Please let this scan be completely clear. Or, if it is not, then please let the cancer be prominent enough, just enough, that it will appear in the picture so that we can deal with it."

I know that scans are not advanced enough to pick up minute cancer cells and there is always activity at work first before it will show up as metabolic activity. We waited outside on a bench while Dr. Sauter pulled up the scan results to view immediately.

A very long hour later we got the call. It had already been a long day of lots of travel, rides from our very generous friend Ryan, bag drop-offs at Craig's very generous aunt and uncle, nothing to eat but a bagel and a body full of radioactive dye.

Craig and I listened with the phone on speaker as Dr. Sauter told us, eloquently, that he would not put me through the transplant with this kind of cancer activity because it would not work. Basically we don't want to waste this opportunity. The allo transplant is really a one-shot deal and we want to be sure that the circumstances in which I enter it are absolutely ideal. Right now, that's just not the case and I am convinced that the fact that these symptoms presented just at the right time and that I have doctors that take me seriously and are watching my case so intently means that I'm meant to get through this. It's a blessing in disguise. I need more time to get into remission and more time to get strong so that I can enter this major procedure poised for combat.

This is okay. I'm not angry at all. Of course I'm frustrated and hate to think of dragging this out further, but I'm more relieved than anything. I had this awful fear that the cancer would be brewing just low enough below the surface that it couldn't be detected but would be there just the same and would put a big damper on the success of this transplant. In fact, I knew it was there as much as I tried to convince myself otherwise. Dr. Sauter told me that though it is obviously disappointing and frustrating, this is not a step back it's just ... a step to the side.

This side step involves getting onto another chemotherapy drug through a phase II clinical trial being offered only at Sloan-Kettering. The drug, Bendamustine, is not yet approved for use against Hodgkin's Disease so I would not be able to obtain it anywhere else. However, it is the drug that shows the most promise for people who have refractory Hodgkin's Disease that has come back after a stem cell transplant and don't have other treatment options.
It's not a new drug. It was actually founded in Germany in the 1960s and was shelved but has recently been brought back into use and proven very effective in breast cancer, LLS, non-hodgkin's and others.

I am extremely fortunate that Sloan-Kettering is hosting this trial as the criteria seems to have been built around me. After we learned all the news and that my hospital admission was cancelled, we stayed at Craig's aunt and uncle's in Larchmont and enjoyed some wonderful, distracting conversation that kept us sane and comfortable. They then played Manhattan chauffeur for us all day Thursday which we could not be more thankful for.

Dr. Sauter paired me back up with Dr. Alison Moskowitz, a lymphoma specialist whom I had actually met months back when I was visiting Sloan for a second opinion. She is the one administering the study and she made room for me in her Thursday schedule to further assess my eligibility and explain how it will all work.

It was a lot to take but we left very hopeful. I am patient number 35 to be going through this. There are only 37 slots before the study closes so again, I feel very lucky to be able to get on it. About 5 people have gone onto an allo transplant after this drug regimen. So I'll be the sixth in the country, world possibly? Maybe my case will go in the "Book of Medical Wonders" or something. The elite minority group that I now belong to continues to baffle me ... when and how did this happen?

I'll begin the treatment next Thursday and will need to come the day before for a PET Scan and bone marrow aspiration dictated by the study protocol. In the meantime, Dr. Moskowitz, now my primary caregiver, put me on a course of Prednisone steroid which will slow the Hodgkin's growth, lessen the fevers and the chest inflammation and aches. It seems to already be working.

The difficult part of the Bendamustine regimen will be how protracted it is. It's two days in a row of infusions then four weeks off for recovery in between (treatment is once every 28 days). A PET Scan will be checked after two of those cycles. That means that in even a perfect world, I won't be starting the transplant process for another 2 1/2 months, though we'll be pulling the trigger on that as soon as absolutely possible. My sister's Neupogen shots will be taking up space in my parent's fridge until then.

Oh and another bonus? It is likely that I now will do targeted radiation as part of the lead-in transplant process since this sternum area has been a source of contention on all of my scans. The disease has now returned in just this one area that we can really focus on zapping. That's still being discussed among the transplant team ... . I realize it will leave me with many more side effects, but I'm certainly willing to do it if it means it will further annihilate the cancer.

So this means I get to enjoy more of the foliage, make a Jack-o-Lantern and hopefully get to go to our 10-year high school reunion and have Thanksgiving at home. Christmas? Well that's going to be another story ... . I'm happy that I get some time to get more strength built up and more time to work on getting my head in the right place. Primarily I'm grasping desperately for patience and building things to focus on during this time that we let the chemo do it's job.

There's a big correlation between the noun "patient" and the adjective "patient." To survive as the noun you've really got to aspire to be the definition of the adjective.

Beautiful song by one of my favorite artists. It seems to sum up much of what I've been feeling as this all set in:
"Are We Really Through?"-Ray LaMontagne