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.

The Three of Us

The Three of Us

Tulips are the most special flower because they

can stand alone like a soldier on a hill. When in a group they have

the feel of  being in a relationship like unto a family It makes them stronger and somehow

better at times. When in the light you can see the illumination filter through

the gentle yet strong petals. Tulips, just their name says enough.

7x5 acrylic on canval panel.

$80

Grand and Green

Grand and Green

This monster bug creeps along the pavement going no

particular place. He is led by an unknown force.

Why is it then that women shrek at the very sight of him.

Little boys love him, while little girls cring at first glimpse.

6x6 acrylic on canvas panel

UNAVAILABLE

Roses Are Red

Roses Are Red

If I had a choice I would choose red. It is my favorite

color you know. My theory is that anything is better with just a touch

of red. The red rose is the most beautiful? Right?

Waiting On A Woman

Waiting On A Woman

He bought a single yellow rose and laid it gently on the table. A fragile glass was found in

the back corner of the cabinet and he reached for it knowing that she would

soon be home. His only thought was to tell her how much he loves her

and how special he knows that she is. His goal is to make her day and see

her smile as it creeps slowly across her face. The time creeps by as

he finds himself waiting, Waiting On A Woman

7x5 acrylic on panel board

$80.00

I'm A Little Teapot

I'm A Little Teapot

I'm a little teapot short and stout, here's my handle here's my spout.

BUT today I am holding a beautiful boquet of flowers.

Flowers found along the side of a country dirt road. A country

 leading to my mama's house.

No Longer Available

Aunt Lula's Petals

Aunt Lula's Petals

Flowers of all sorts were Aunt Lula's passion. I can remember going

to her house as a child and getting lost in her luscious garden. The tiger lilies are what I remember

 most. They were bright orange spider like blooms with shiny black seeds. She would

always let us pick them despite mama's protest. Aunt Lula's favorite

flowers were the ones with little pink blooms. The fragrance was outstanding. The view was

to die for but I what I liked most was the adventure while lost among the blossoms.

No Longer Available

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:

Ripe Unto Harvest

Ripe Unto Harvest

The orchard is loaded and ready to pick.

The harvest is grand. Only the best and juiciest will do.

The tart sweet flavor of a crisp red apple. Nothing is so

flavorful. This is the best crop. These apples are worth the wait.

8x10 acrylic on panel board

Painted for a challenge at

No Longer Available

The Pumpkin Patch

The Pumpkin Patch

Have you ever been to one? A Pumpkin Patch?

There they are all alike yet all so  different. Orange, green,yellow, white. Any color you can

imagine. The skins are bumpy, smooth and when you feel them your hand feels the roundness

which is both firm and cool.

If you go out on a fall day you will feel the lift of your spirit as the air wisp your hair and

you hear the laughter of children picking out the perfect one for carving and grandma

finds the one just right for the thanksgiving pie.

6x8 acrylic on canvas panel

$98

Are the Dutch Known for Being Crazy?

So, this is my first apology for not posting at all last week. One of my goals is to have this problem on a rare-to-never basis.

What I can talk about is a camera angle trick I learned a few years ago in a class on the fundamentals of making comics. It's called the "Dutch Angle." I have no idea why it's called that; I'm sure there's some pretty basic research I could do on the subject, but I'm content to think that the true story is lost to the ravages of time. A Dutch angle is tilting the camera pretty drastically so that everything seems off-kilter. This can provide various effects, depending on the context of the scene.

1) If things are getting suspenseful and/or confusing, a tilted viewpoint can make the viewer feel off-balance or lost. Or if the character is drunk or wavering in and out of consciousness, it can help the viewer share the feeling of topsy-turvy. One example might be Orson Welles' 'The Third Man'

2) If a character is warped or maniacal, capturing them in a tilted view could contribute to their off-kilter worldview. Probably the most famous example of this is the 60s TV show "Batman" which had its villains commonly filmed at canted angles, since most of Batman's rogues are insane.

3) Diagonals will always be more 'action-y' than vertical or horizontal lines. Viewing an action scene with a Dutch angle can contribute to its dynamism. For this example, I'm using the drawing I'm working on right now, with Han Solo and Princess Leia shooting their blasters on the ramp of the Millenium Falcon.

What's important to note is that an artist should never rely solely on the Dutch angle to make an image interesting. The characters, scenery, and context of the scene itself should be interesting in and of itself, and communicate the mood that the artist wants. The Dutch angle should merely heighten that said mood.

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.