Tuesday, June 30, 2009

First Bald Birthday Since 1982

I am now a 27-year-old. Did I think this is what I would be going through at this point in my life? No. But I'll now forever treasure every birthday that I'm given and I'm sure that this one will stick out in my mind as the first one celebrated bald since 1982. 

It was a vertical weekend meaning I wanted to do everything I could to make the most of it. I love going into the city and was looking forward to a day of open air markets and the city hustle bustle, but was bumming knowing that I'd never be able to handle walking the blocks after blocks that I would want to walk. So I slept in on Saturday (that is until 9 a.m. ... even with cancer I can't waste a weekend morning). When I woke up, Craig had the day planned. We'd drive into the city and take a hop-on, hop-off 
"topless fun bus" as he called it. Turns out everyone kept their tops on, but it was fun. We were able to see so much of the city, learn random factoids, spend time at the places that we wanted to and fly past those that we didn't from the vantage point of an open-top double decker bus: a perfect solution to my endurance problem.  

The day was perfect. We found a
massive, 8-block long open air market with lots of booths to poke through and street meat to eat. We witnessed a sudden and torrential downpour while in Times Square and watched two young lovers scale the TKTS steps soaked and get more soaked making out like a music a video with an audience of hundreds huddled under overhangs. We saw a guy dressed as Spongebob get arrested. We saw a man-made beach complete with a Tiki bar, sunbathers and kids making sand castles in the midst of South Street Seaport and a b-boy group with super-human ab strength. Only in New York. 

I'd been looking forward to Thai food for a very long time and on Sunday I certainly got my birthday wish. We went to my favorite, East West Grille, a former dining car-turned Thai-Lao getaway plopped inbetween the car dealerships and shopping plazas of New Park Ave. Most all of my girlz and most all of their other halves  made it out for a delicious spread of curries and pad thais. The 13 of us 
took over the patio. Craig and Tom even went down to the basement with the waitress to bring up extra tables ... we most certainly gave them a Sunday business boost. It was so good to see everyone --- from Mass, New York and all sides of CT, we all converged over spiciness and shrimp crackers. I laughed, a lot, as is usual with our crew and just basked in the sun and the warmth of our friendship. And the yellow curry with three kinds of tofu? Amazing. 

The actual day of my birth, the 29th, fell on Monday and I decided that as a present to myself I was going to go into the office. I was feeling good and I wanted to get dressed in a collared shirt and business skirt and feel like a grown-up for the day. I literally had to dust a spider web off of my Vera Wang heels --- haven't worn anything but flip flops and moccasins in a long time. I even broke out the iron; I was surprised I could find it. Most try to get out of work on their birthday, but for me, it was my reward for a very tough week last week --- I could be normal for a day. Little did I know that my co-workers knew it was my birthday so I was surprised with a pizza party. It felt great to catch up with everyone, sit through a meeting and get the chance to catch up with projects and on life with my director. 

Then last night, was my family party. Can you tell I like to stretch out a birthday? The fam came over and my mom and Craig tackled the food --- grilled salmon and steak, a birthday surf and turf. The night was beautiful so we all sat out on the porch, marveled at Sammy's skills with the tennis ball and just enjoyed each other's company. 
My mom made Funfetti cupcakes (my fav) and in them were candles to blow out. This year I started making my wishes as soon as the notes of "Happy Birthday" began. I have so much to wish for and so much to be thankful for at the same time. Everyone waited patiently as I continued my list of wishes in silence then finally got to blowing out the flames. There's magic in that wax, I know it. 

Thursday, June 25, 2009

A Tribute

Michael Jackson has always been a (slight) obsession of mine. Yes, I used to walk around wearing a glove and yes, "Thriller" was danced at my wedding. His musical legacy will be greatly missed and I just had to give a shout out. This MJ song especially has always moved me, now more than ever in my life. Rest in peace.  

"Smile"


Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
With your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile 
If you just...

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just...

Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you just smile...

That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile

The Mind-Body Connection

I was admittedly in a dark place the past few days, hence the blog absence, but I got it out of my system and no need to dwell on that. This week was a tough week and there will probably be more to come, I guess it's all part of the healing process. I think this week was the toughest so far because I've been doing the "cancer thang" for six weeks now and I'm ready to be finished ... but there's still a long road ahead. There was a lot of fatigue, a lot of weakness, a lot of pain, a lot of tears and "woe is me," but that does no one any good and I know that, but sometimes the drugs do the talking. 

Today the sun came out and with it my positive outlook came back. I got some good advice from a former colleague and forever friend who also battled lymphoma, advice that helped her: "Remember it's a marathon, not a sprint." Now I ran the 100 and 200 meter races in high school. I passed the baton in the 4 x 100 relay. My time to shine lasted 14 seconds. I like things fast, but I need to realize that beating this takes time. I'm a quarter way through ... . Any other time in life, you never want to wish time away, but in this case November can't come quick enough. I mean, I'm going to enjoy every day no matter how much cancer crapness I'm dealing with. 

So I've decided to slow things down, coincide with the pace of my treatment and learn to focus on each moment rather than pushing to the next. 

Step 1: I went for a massage. This was fantastic and rejuvenating. The stress and fatigue of the week was melted away, though short lived, it was marvelous for the time that it lasted. I walked into the salon and was asked to fill out a "massage profile." In my pre-cancer life I would scan these type of forms checking "no" all the way down hardly paying attention to the medical conditions listed. I'll never be able to ignore "existing medical condition" questions. 
Please check all that apply: 
Are you here for stress? Check. 
Pain? Check. 
Injury or medical condition? Check. The Big "C" in fact. 
Recent surgery? Check. 
On any medications? Check. Check. Triple Check. 
But once the lavender wafted into my nostrils and the masseuse's hands started doing their magic, it was forgotten. My muscles felt fantastic and my mind at ease, but unfortunately, the pain did not go away and as my masseuse explained, the cancer pain is more sensory and bone pain, but that continued massage could help heal ... I will have no problem perusing this. 

Step 2: I took a yoga class tonight. This was also fantastic and rejuvenating. I called the studio that's just down the street from me in the Tariffville mill, The Zen Zone. This sounds like the zone I need to be in so I pulled the "cancer card" and got two free classes. Tonight I tried All-Levels Yoga, next I try Yogalaties "to see what works better for my body and soul at this time." I love this instructor already. Though I've only taken a random pilates class here and there, I instantly caught on and am instantly hooked. The candles were lit. The lights were dim. The music was gentle and tranquil. I breathed through stretch after stretch, lengthened my sore muscles and opened my creaky joints in the "happy baby," "basking frog," "warrior 1, 2 and 3," "extended child pose," "reverse swan dive" and "downward dog." The last 15 minutes were just breathing and meditation and I could literally feel the stress melting away as my body sunk into the mat. 

I brought it back to the heart center where I rediscovered my inner peace and balance. 

Monday, June 22, 2009

Sneaky Pains

Today was not a good day. I guess the steroids are out of the system and the chemo caught up with me, though I was able to extend the good days for longer this time around. 

The fatigue really started to set in yesterday. Morning was okay and we were able to go for a walk in-between squalls of this endless rain. But after cleaning the house a bit I was flat out. I curled up with a book and the dog and fell asleep just a few pages in for several hours, waking up in time for Father's Day at China Buffet--couldn't miss that!

But today was a whopper. It was very hard to get out of bed this morning, but I had an interview scheduled with a doctor for a story I am writing. Once I was up things were better. I got through the interview, wrote a story and ate breakfast, but by 2 p.m. the gas tank was empty. It's almost like I could feel my body imploding into itself. I couldn't stand up. Then I couldn't sit up. Then I couldn't focus on the computer screen anymore. It was time to sign off for the day. 

The evil flogging feelings are back. However, it's like being beaten from the inside, like your bones are aching outward ... very strange and totally debilitating. As it's been before, it's not a regular kind of tired either, it's a deep, deep fatigue that there is no recovery from without sleep. So I had to force myself to succumb and crawl back into bed, the only way to give my body what it needs. 

I just need to keep reminding myself that it's not the cancer that's winning, it's my body working incredibly hard to fight it that's knocking me down. 

Sunday, June 21, 2009

Babies in the Water

"Babies in the Water" is an extremely inappropriate and weird theme for a baby shower at first mention, but in my chemo brain it made sense. I saw brightly colored, sea animal-shaped squirty toys that I thought were cute and I ran with it. Despite continually calling it Babies in the Water (not a nice image,) what I meant was a Baby Beach Party, and I am proud to say that with the help of several non-chemo brained women, we pulled it off and threw my sister-in-law Rachel the fantastic baby shower she deserved. 

I'd planned the date before I knew Hodgkin's disease was going to be part of my life and that the date would happen to fall on a post-chemo weekend, but that was surmountable. Rachel is one of the most amazing women I know and no stupid cancer was going to stop me from helping to show her (and her baby boy or girl to come) how much they are loved. Luckily, having been with Craig for nearly 10 years, I feel very at ease and comfortable with my "second family" and have to say how impressive they are about getting things done. I needed salads and desserts. With the ease of a phone call, aunts and cousins were there with arms full of both and close friends were there helping to set-up, break-down and concoct the all-important Sangria. 

Everything went as planned. Rachel looked radiant. All-in-all it was a very good time and so nice to see all of these amazing women (and three very cute babies) in one room. Cancer was all but forgotten, except for my bald head. 

It was the first day out of the confines of my house without some kind of hat, bandana or scarf hiding my baldness. It was a decision driven both by fashion and comfort. Comfort in that I knew I couldn't find myself in a more accepting environment. A baby shower full of women was a place where I could show I was embracing my new look without fear of consequence. Fashion in the sense that I wanted to wear this certain black-and-white dress and I didn't have a scarf to go with it. The only black one that I had just wouldn't tie right without looking like a do-rag. No offense to anyone that wears a do-rag but on a little, white girl it just looks obnoxious. So I decided to don cute earrings, pump up the mascara and free-head it. 

Before the safety of the shower environment we ran some last-minute errands to the grocery store, the bakery, the dump and no one looked at me funny. No one laughed. No one really reacted at all. Or if they did, I guess I chose not to notice. I felt comfortable and confident knowing that I wasn't going to let cancer ruin a good outfit day by forcing an uncomplimentary accessory.  

From now on if I'm going to cover my head it's because I have the perfect, fabulous scarf to match my outfit or the cutest hat to keep my scalp from frying in the sun. Not because I am ashamed of having lost my hair or because I am trying to hide my status as a cancer patient. If anything I want people to know. I want people to see that I have cancer but I'm out running errands, planning parties, taking walks just like anybody else. That cancer does not define me, but that I now define my life around it by making the most of every moment. 


Friday, June 19, 2009

Chemo Day Three

Ahhh, chemo. It's such a pleasant experience, especially when your particular chemo cocktail is so potent or "hard core" that it takes an expertly inserted IV to be able to administer it without blowing my vein apart. This usually requires at least two stick attempts and then some ultra-comfortable adjusting of the needle while in my vein. Sometimes the nurse tries both arms, sometimes the vein by my wrist, sometimes the vein in my inner elbow. This one seems to always be the winner, however the downfall is that I can't bend my arm for the entire 5-hour process. I suppose this is a lesser evil than imploding my vein, however. 
But other than that, Wednesday's infusion went as usual---long, a little woozy, dipping in and out of drug-induced hot flashes as anti-nausea after anti-nausea drug is sent through my veins then "A" dripped in, "D" dripped in and "V" and "B" inserted manually by push by the nurse for added vein protection factor. I mimicked what I learned from last round and sucked my way through an entire bag of ice chips, me and my mom ate several "chemo cookies" baked by my mom's dear friend and I ate a peanut butter and honey sandwich which seemed to sate the nauseous bouts as I tried not to watch the bags of meds slowly, very slowly, depleting. 

However, one unusual and exciting thing happened at this particular chemo session. I met a woman in her THIRTIES, believe it or not, on her way out of the Cancer Center as I was coming in. She came right up to me and said: "Hi, how are you doing? Breast cancer?" I was so taken aback by this bubbly, very cool woman that I forgot what kind of cancer I had for a second. 

"Uh, no. Hodgkin's." Then we shook hands. 

"Nice to meet you, Hodgkin's." 

"Nice to meet you, breast cancer." 

She told me that she finished up her chemo treatment six weeks ago. And she really looked fantastic. I asked if she had radiation and she told me that nope, she just had 'em lopped right off. Obviously my eyes avert to her breast area where there lies a particularly nice and perky set. 

"Oh these, they're not mine. I just had them put in," she says as she jiggles her new additions. We laughed and it felt so incredibly good to be talking to someone that I could relate to. 

She told me about a great website to get scarves from and that though it sucked for her over these past few months, all you can do is pile drive through it and keep heading for the light at the end of the tunnel. 

"And you will too; and you'll come out even stronger for it," she said. 

It made me both comforted and proud to see this strong woman "pile drive" through this and still have the strength to give me the inspiration to know that I can do the same --- all in just a brief conversation. 

Wednesday, June 17, 2009

Everyday Pleasures

Last night on my way home from my mom's birthday party a huge, white cat darted out and ran in front of my car. I will take this as a good luck sign for this morning's chemo infusion. Black cats are bad luck so that must mean white ones are good luck ... I'll take what I can get because I really am not looking forward to going. 

I've been focused on little things like this that make every, individual day that much more special despite, or maybe because of, having cancer. 
  • 3:45 p.m. This is when Craig gets home from work and my heart flutters ;)
  • Sammy, Sam, Samantha, Sam-a-lama-ding-dong (her racing name), Samilicious, Sambuca, Sam Dog Millionaire ... whatever I'm calling her at the moment. My always faithful companion
  • My daily walk: I shoot for at least 30 minutes of body moving every day. Sometimes I get over a mile in a half-hour, sometimes it's just around the block, but either way it feels so good to get the blood pumping.
  • Social media: e-mail, Facebook and online young adult cancer communities have been such fantastic digital supports and have reconnected me with some very special people in my life 
  • Stretching
  • Working: I love my job and getting to continue to report, interview fascinating people, write, work on website and in social media, makes me feel like I'm still a contributing member of society and gain a sense of accomplishment at the end of each day 
  • Sunshine: if it's a beautiful day, I set up my home office out on the porch and get to work in the warmth of the sun
  • Wildlife: working from home I've discovered the wooded wonderland that is our yard. Birds are singing all day long, I see rabbits, even sometimes deer, we have a snake that suns on the front step just about every day and I've been able to watch baby birds hatch from eggs in a nest tucked under our front porch overhang 
  • My Minnetonka moccasins: they make my feet smile. I wear them every day no matter the weather 
  • Blankets, mmmmmm, blankets
  • Food, glorious food: any kind of food, really. When I'm feeling crappy and sometimes have to force it down, food always makes me feel better
  • Hot showers, complete with a good massage of my bald, tender scalp and a detox mineral scrub to slough off all the bad, cancer cells 
  • Our koi fish pond: watching flotsam, jetsom and nod swim is cathartic and very Zen 
  • Naps, lots of naps, they do wonders 
  • Fruits and veggies: I'm lucky to be going through this during summertime when the availability of fresh, affordable produce is abundant
  • The mailman: he always brings fun surprises and cards that make me smile 
  • Friends and family: my cancer angels  

Sunday, June 14, 2009

A Vertical Weekend

"Worrying is pulling tomorrow's clouds over today's sunshine." - Joyce Saltman 

I've seen many other cancer patients writing about their "vertical days" so I can't claim to have coined the term, but I certainly can relate to its truths. When it's a vertical day, it's an especially carpe diem kinda day, and I had a lot of vertical moments to take advantage of this weekend.

Friday is traditionally pizza night in the Diamond household and we were talking about getting the $8 large Big Y cheese pizza because we love a good deal, but I pulled the cancer card. I pointed out how much we love Little City's namesake pizza and how we should get it while we can as we should be living every moment to the fullest, and so should 
our taste buds. So Craig, Sammy and I picked up our fav pizza: grilled chicken, melted leeks, artichoke hearts, roasted garlic spread, fontina and Roma cheeses and enjoyed it on a blanket in the sun in Simsbury Meadows. A beautiful night to devour a large between the two of us then nap in the grass and stroll along Iron Horse Boulevard. 

Saturday was Craig's birthday surprise that I had planned and was so excited to take him to. By 9 a.m. we were in Charlemont, Mass., strapped in harnesses and carrabeaners galore and ready
to fly through the trees on a canopy zipline tour at Zoar Outdoor. We had ziplined through the rainforest in St. Lucia on our honeymoon and loved it, no matter how sketchy it may have been being two days after Hurricane Dean plowed through! Here, we took a 4x4 ride up a mountain from which we descended from tree platform to tree platform via 7 ziplines, 2 repels and 2 sky bridges. 

We zipped to speeds of 25 miles an hour on lines nearly 600-feet long. The whole experience was exhilarating and enthralling to be out among these beautiful views of the lush Catskills, sharing laughs with a great group of people and watching my husband speed toward me with his shorts flapping in the wind. 

Still feeling strong and vertical, we stopped at some interesting Mowhawk Indian markets full of rabbits feet, moccas
ins, snake head key chains, plastic unicorns and real "looking" bear claws. We even 
passed a Pow Wow and an 80-foot Indian statue. We did end up at Big Y, this time for the 30-inch-grinder-for-$9 deal and ate it across our laps on the drive home. Not the whole thing, mind you. 


Still feeling strong it was off to Celebrate West Hartford in our old stomping grounds. We were even brave enough to bring Sammy who did markedly well in the huge crowds of people. All she barked and flared her fur mohawk at were the cows on parade --- she didn't know what to think of these large painted "animals" with no scent --- and a man dressed in a dog mascot costume who tried to pet her. Who can blame her? We saw some beautiful artisan works, heard some great music and caught up with some of Craig's fellow teachers. I even had the chance to meet some of his students. Mr. Diamond is a rock star at events like these, especially with a wife and dog on his arms since kids are always amazed to know that teachers exist outside their classrooms. 

Then it was pumpkin time. My body started to give out and it was time to leave. A very long afternoon nap was wondrous. Woke up at 8:30pm for a slice of pizza, then back to sleep, but I was proud that my body did me good. 

After breakfast with some friends we went to Hartford Hospital's Celebrate Life, an event that I had been promoting in the communications I handle for the hospital and was intrigued to attend for myself as a patient. It's an odd dynamic working at and promoting the hospital who's doctors and nurses are saving my life. It's humbling to have the opportunity to grow such an understanding of the importance of good medical care. Celebrate Life is hosted each year by the Helen & Harry Gray Cancer Center to bring together survivors and family to do just that --- celebrate life. Scot Haney emceed in hot madras pants, always entertaining. There were musical performances, a presentation by a laughter guru and addresses by the center's benefactor, Harry Gray, the hospital's COO and director of its Cancer Center, again, people I've met in meetings or have written or published stories about or photos of but now saw in a whole new context. I chatted with some co-workers who it was so nice to see, and some who did not know about my diagnosis and were wondering where the heck I had been lately. My main goal in attending was to find other twentysomethings going through this, but came out with something entirely different. 

It seemed there were close to 1,000 people there and there was not one person my age in sight. Lots of old people, a sight I am getting used to. I also spotted no one else in the entire place without hair or wearing a scarf on their head like I was. Maybe this was more for survivors not those currently undergoing treatment. I felt like Craig and I stuck out like a sore thumb, but by the end of it realized that I had more in common with these people than I ever thought. 

Before the program started, a woman behind me patted me on the back and asked if I was undergoing chemotherapy. When I turned I saw this fantastically done up older woman, maybe in her seventies I would guess. She told me that I reminded her of herself 10 years ago when she was diagnosed. She told me how she lost all her hair and how it came back as curly as Shirley Temple's and saved her lots on salon visits. She was very intrigued by the type of cancer I have, who my oncologist is, and told me over and over that I was going to be fine. 

At the end of the program it quickly came apparent that there were many more than this one old woman who had taken notice of me. I turned to say goodbye to her and her row of friends all wanted to give me a hug. I was showered with "You are so beautiful!" "You are going to do great!" "We will see you next year!" They were all teary-eyed and hugging me close into their bosoms so that I was inhaling their strong perfume and hair perm chemicals. It was so touching and so unexpected that the lump in throat rose higher and higher. I turned and there were more old women literally waiting to hug me, to grab my hand, to tell me that I was beautiful and that I was going to be okay. I suddenly had a dozen grandmothers rooting for me and I realized that they saw themselves in me. They saw their daughters, their granddaughters and wanted me to know that I could fight this. They did. 

So overwhelmed by emotion and trying desperately to hold it together as Craig and I walked hand-in-hand out of the auditorium, a younger woman came up to me to ask if I would accept something from her. During the program they had asked all those who had been diagnosed within a year to stand, then 5 years, 10 years ... up to 20 or more years. The woman said that she saw me stand and wanted to give me a pink "Strive for a Cure" bracelet that she had gotten at Relay for Life the day before. She told me that she had found a lump on her neck, had it removed and was done with cancer so doesn't consider herself a survivor like others, but wanted to pass this bracelet along. I told her that I would be honored to wear it and she hugged me and told me that she hoped my treatments went as well as they could go and like all the others I had met today, told me that I would beat this. 

I walked out leaning on Craig unable to speak in awe of the kindness and overwhelming love of these perfect strangers. It's a moment I'll never forget. 

We pulled into our driveway to find my parents arranging beautiful hanging plants on our porch and planting potted flower displays and I thought, how can one person be so lucky? 



Friday, June 12, 2009

Potentially

Had a minor (okay, maybe major) freakout. I'm reading this very helpful guide to Hodgkin Lymphoma. I've now learned that Hodgkin is singular unless when using the term Hodgkin's Disease. In any case, it's put out by the Leukemia & Lymphoma Society and is almost like a car manual, divided in sections like "diagnosis," "symptoms," "treatment." Then came the scary one: "prognosis." 

I had not, until I read this, for once thought of the possibility that I would die from this. The thought literally never crossed my mind, whether I unconsciously pushed it aside or it never came. Every single person has said to me that Hodgkin's Disease is highly cureable. That's even how this booklet starts out: "Hodgkin lymphoma, one of the most curable forms of cancer, was named for the physician Thomas Hodgkin." 

But blazing at me in golden rod and yellow is "Table 5: International Prognostic Factors for Advanced Hodgkin Lymphoma" showing the high-risk factors, the first one being: "the patient has Stage IV disease." It goes on to say that those with low-risk Hodgkin lymphoma (this is not me) in Stage I and II have a 95% cure rate. All along, I thought that I was also in that 95 percentile, but no, I am stage 4B. That's 4 with added risk factors and b symptoms. Fantastic. 

Next section: Advanced Hodgkin Lymphoma (this is me.) I look at the little diagram of the simple bodies in Stage I and II with just a smattering of red indicating cancer presence. Then there's the Stage 4 body silhouette gleaming with spots of red from the neck to the spleen. I read on: "Hodgkin lymphoma is potentially cureable in late stages." Rewind. potentially? potentially cureable? This is when I lost it. Full flood gates open. 

Being a writer by trade myself I know how powerful words can be and this word  stabbed me right in the tumor-filled chest. What a fully loaded word choice ... . Having "potential" is what you tell the dyslexic kid that wants to win the spelling bee or the big girl that wants to win the beauty pageant. This word now echoes through me and I realize the seriousness of all of this. Death had been off the table until just this moment when it really sunk in how far along this cancer is. I know that dwelling on and worrying about one stupid sentence in a poorly worded Hodgkin's handbook isn't going to help my situation but it doesn't change the fact that I'm forced to realize the potential brevity of this fragile life. 

I just can't understand how this could have happened. When did it start? How long have these mutated cells been inside of me and how fast are they multiplying? Was there something I could have done to prevent it?

Now I'm more poised than ever to beat this, whatever stage I'm in and despite what this "international consortium" determined as my prognosis. Hodgkin lymphoma is highly cureable and I am going to be fine. My oncologist says so.  

Thursday, June 11, 2009

The Simple Things

Cancer doesn't just limit your physical capabilities, it also hits the mental ones. Unless it's work- or cancer-research related, I don't want to think about anything too complex. With my world so full of new things to learn about my body, my disease, my prognosis, my medications, my mind gravitates toward the simpler things in life. 

It's almost like a return to childhood. Maybe it's the occasional feelings of helplessness and complete dependence, feelings I haven't felt (and worked all those teenage years not to) in a very long time. But I've surrendered to the security blankets, stuffed animals and thumb sucking (figuratively) when necessary.  

My eyes widen at cookies like I'm a five-year-old and I lick my fingers after brownies like one too. I don't even think about calories and how that gooiness will later render itself on my hips anymore. I just think about how delicious they are and eat them. The chemo seems to kill any chance of gaining weight anyway, in fact I keep dropping it (it's my new diet secret, everyone should try it (sarcasm))! Our cousins sent a basket of Mrs. Fields cookies, some even shaped like flowers with smiley faces on them and I was instantly as happy as a clam. An aunt gave me a stuffed turtle and I have it prominently displayed on the TV stand and I play with it and take it with me to treatments and it makes me smile. 

My sister-in-law, a second grade teacher, sent me a laminated book created by her class full of "Poems to Make Me Laugh" and "Pictures to Make Me Smile" and boy did it work. Poems about splitting pants on the playground or Helga's bad hygiene were just what the doctor ordered. And I've always loved children's artwork, but it never struck me so much. I literally started bawling looking at these beautiful, calming pictures they drew of rainbows, space and underwater scenes ... just breathtaking! 

Dumb bathroom humor jokes, courtesy of several joke books people have sent, and TV shows like "Wipeout" where people bounce around and wrench their bodies on ridiculous obstacle courses with challenges like "big balls" and "sucker punch" sliding around in shaving cream and mud wearing neon-colored spandex are HILARIOUS to me. 

When in the Cancer Center waiting room I don't reach for Time or Newsweek, all I want is trashy celeb mags: US Weekly or People, it doesn't matter. These are things I've never read in my life, but they now provide such an escape to such an abstract world of stresses over celeb baby bumps, drunken rampages or bad hair days that it ironically melts away the things that I worry about. If I try to read about important social issues like starving children in Africa or the threat of nuclear attacks in Korea I just cry, literally. I've never been a crier but my emotions are at peak. If I see a baby, I cry. If I see a beautiful tree, I cry. If I see a dead animal on the side of the street, I cry. 

I used to listen almost exclusively to NPR news and other topical talk radio when in the car, now I hop back and forth between hip-hop and country. How can I feel bad about my problems when these people can't be with the one they love so they "kiss them through the phone" or have to "do the Helen Keller and talk with their hips." Country can be even better: Taylor Swift is my new favorite. It's much happier singing along about high school romance and fairy tale princes than deep, haunting lyrics. And then there's the new Dave Matthews CD that I am in love with --- couldn't have come out at a better time: "Funny the way it is if you think about it ..."

Several friends and my sister have burnt me CDs full of feel-good and lashing out songs which I love. A good soundtrack makes any obstacle easier to overcome and singing out loud has been fantastic therapy. But the one that may have taken me most by surprise was the arrival in the mail of the newest Miley Cyrus CD: the soundtrack to the Hannah Montana movie with a note from Vanessa saying that she always thinks of me when she hears "The Climb." I love Miley Cyrus more than ever now and I'm not ashamed ... I'll sing right along with all the tweens out there. So I'll close with the wise (and simple) lyrics of Miss Hannah Montana: 

The struggles I'm facing
The chances I'm taking 
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that 
I'm gonna remember most, yeah
Just gotta keep going   

And I, I got to be strong
Just keep pushing on 
'Cause there's always gonna be another moutain 
I'm always gonna wanna make it move
Always gonna be an uphill battle 
Sometimes I'm gonna have to lose 

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah! 


Tuesday, June 9, 2009

What a Difference a Day Makes

As hoped and predicted, Sunday seems to have been the worst of it. Since Sunday's flat-out fatigue things have been much brighter. Yesterday I worked a full work day and got lots accomplished. It felt fantastic to again be a functioning member of society after Sunday's feelings of worthlessness. If it's just one concentrated, bad day during these two week sessions then have at me. I can deal with that. 

I truly believe that being able to anticipate, prepare and control the things that I can has made a world of difference. Plus, the chemo is working. I know it. With less cancerous cells inside me, my body has a better chance to fight. Sucking on those ice chips during my infusion was the best advice Dr. Dailey ever could have given. I can't wait to gush about it to him tomorrow and encourage him to put his recommendation in flashing, neon lights in the Center's chemo living room: "AVOID MOUTH SORES: SUCK ON ICE CHIPS" 

I've also become extremely focused on loading my body with good stuff. I have powered down quite a stockpile of raw, antioxidant rich foods. In one week I've eaten one quart of strawberries, one pint of blueberries, one bunch of bananas, a quart of organic banilla yogurt, one box of granola, one pound of spinach, two cucumbers, a half-pound of baby carrots, a head of broccoli and one of cauliflower, all by myself. Yesterday alone I drank 72 ounces of water, half a pitcher of "meditative mind" iced tea, polished off a container of 100% grape Juicy Juice and two glasses of chocolate soy milk. This is what I call disease-fighting fuel. I've always been a healthy eater but now I'm in max-health mode. But not to worry, there is plenty of ice cream, chocolate and cookies mixed in --- for harmony. I'm reading a lot about energy medicine and the great capabilities oxygen has to fight disease, about exceptional cancer patients and the incredible powers of mind over matter. Must up the oxygen content and reduce the acidity. I want to give my blood the best chance to carry the good cells and dump the bad ones. 

Every day I also make sure to get my blood pumping and my muscles moving. In the morning I do my own version of yoga stretches, elongating my creaky, knotty muscles. Eventually I'd like to learn the actual yoga practice during all of this as I'm sure the physical and mental pieces will do me wonders. But one thing at a time. For now, I twist and contort however it feels good every morning. Sometimes on my porch incorporating the deck railing as my ballet stretching bar. My neighbors probably think I've lost it. But I don't care. I don't want my muscles to shrivel from all of this lack of exercise. 

On the days that I can do it, a walk has tremendous healing powers. Last night Craig, Sammy and I went for a beautiful walk around the neighborhood. The evening was the perfect temperature. The air felt like a crisp, starched sheet wrapped around us and swirled with the smells of barbecue and fresh-cut grass. It was so perfect that even Sammy was taking it in, staying at my snail's pace and not pulling on her leash in the slightest, a miracle in itself.  We noticed so many more things when walking slowly rather than running through the neighborhood: lots of birds, including a blue jay and a goldfinch, newly sold houses, decorating and landscape ideas, the views at the top of the heights, and what our neighbors actually look like. It felt so good to leisurely jaunt with Craig, to feel my muscles warm with use. He didn't care that sometimes I walked with high knees, sometimes I trotted, sometimes I shuffled or skipped, trying to work different muscles and bend different joints. He's never been embarrassed by my at times quirky and uninhibited ways (or at least doesn't let on if he is) and that's what I love most about him. 

Sunday, June 7, 2009

Cancer's Subtle Reminders

It's amazing how quickly things can change these days. Despite my "bald is power" mood this morning and the surprising amount of energy I've been feeling since Wednesday's infusion, things have taken a big dip. There's just no predicting how my body is going to feel at any given moment and that may be one of the most frustrating parts of all of this. Yesterday was full of laughs and ice cream with Liz and Lisa and even a trip to Harwinton to see my mother-in-law. Today, getting to the bathroom and back has seemed a rite of passage. 

I woke up feeling queasy and achey but figured it would pass. A visit with an ultra-positive friend and a trip to Brookside Bagels for what else but a bacon, egg and cheese on a cheddar everything bagel proved to be just what the doctor ordered ... at that moment anyway. We were so desperate for the cheddar everything fix that we even waited 15 minutes for a new batch to be baked after being devastated by the site of the empty basket sprinkled with only crumby remnants of cheesy deliciousness. Nicole was a cheddar-everything virgin and we could not let her miss the experience. 

That was like the tip of the roller coaster and the rest of the day was the speedy plummet to cancer crapness.  When I feel like this it's almost like an out-of-body experience. Like my body is just carting around this cancer battle inside of it. Like I'm no longer a person, just a means for which to carry this disease. No matter how much I might want to go for a walk, go pick up a milk, toss the ball with Sammy, it was not happening. I was literally zapped of energy. Sitting up was difficult. It's not a tired like a "I-just-played-tennis-for-an-hour-and-was-volleying-like- a-bad-ass-and-now-I-need-a-nap" tired. It's a bone deep tiredness. It's not just muscles. It's like my tissues and cells are tired, everything down to my neurons, protons and electrons are completely exhausted and crying for rest but there's no sanctum to be found. Even the inside of my ears hurt. 

Itchy, patchy stubles remain on my head and my baldness has morphed from a cute Demi Moore in "G.I. Jane" to more closely resembling Yule Brynner in "King and I." Like Yule I'm "Getting to Know" my new cancer-filled self. I'm too tired to nap, too antsy to stay in one place, but too beat to move. From my bed under a ceiling fan to an anti-gravity lounge chair in the back yard I shifted like a sloth throughout the day carrying books and drinks with me as if I could concentrate on reading anything. What gets me through is knowing that tomorrow can't be any worse than this and that it's only going to get better. At least I have bowel control and mouth tissues in tact for this bout. 

Benefits of Being a Bald Chick

  • I'm saving so much bank on shampoo and conditioner
  • No need for sticky products like hairspray, mousse, gel for body, gel for flattening, anti-frizz serum, leave-in conditioner, fly-away smoothers or split end treatments 
  • My getting-ready time is cut by 80%. Think about it ... not having to do your hair in the morning?
  • No more turning around half-way to work to drive back home and double check that I did in fact unplug the hair straightener 
  • No more highway hair. I can drive with the windows open without fear of a snarled mess
  • No more dealing with salty, sticky, sandy, matted hair at the beach. I can swim without post-dip reservations. And, no worries about highlights turning green in chlorinated pools
  • No roots
  • No long afternoons at the salon ... ok, maybe I'll miss that a bit 
  • No crying after a bad haircut
  • No hair-filled dust bunnies flying around the bathroom
  • No more sore shoulder muscles from balancing the blow dryer in one arm and round brush in the other 
  • No more hair getting sucked into the back-end of the blow dryer filter, or dodging the occasional spark shooting out of it 
  • No more dealing with my baby bang flyaways that arose in the most mildly humid weather
  • No more bad hair days 
  • It's not just my head that is losing hair ... just think of the savings on razors and waxes
  • I get to grow my hat and scarf collection and experiment with new looks from African goddess to punk rocker
  • No more busted bobby pins, snapped hair elastics or alligator clips with missing teeth 
I've quickly grown to embrace my baldness, my newfound natural rawness. Fussing over updos and frying my hair with straighteners and chemicals is over and now I can concentrate on more important things ... a lesson that I'm sure will serve me well for years to come. Bald ain't so bad. It's kind of growing on me, pun intended.

Thursday, June 4, 2009

Chemo Day Two

Yesterday was day two of my chemo treatment: cycle 1, treatment 2 of ABVD. All week prior I made it my mission to inject myself with power foods, walk as much as I could and hydrate, hydrate, hydrate. Lots of antioxidant packed blueberries, strawberries, protein rich natural peanut butter, organic yogurt, granola, and mounds of spinach. The goal being to make my body as ready as it could be for the next chemo whack. 

I felt better knowing what I was going into, yet at the same time, a little more scared than the first time for that exact same reason. This time my treatment was in Avon, which the nurses there deem the "country club." The setting couldn't be more different than the Hartford center, but I really felt comfortable in both places. The quiet here was a little eerie to me, but it also allowed me to spread out, watch a movie on my laptop and get a lot of personal attention from the nurse. Plus, the view outside to the pergola and koi fish pond amid the greenery does beat the busy city streets. However, I did miss the hustle and bustle and variety of people at the Hartford center. But here in Avon, I love that everybody knows you by name and that you get your pick of cushy recliners. Kinda like Cheers, but the bartenders serve chemo instead of brewskis. 

So my mom and I rolled in, passed the blood tests with flying colors, met with Dr. Dailey who had all positive things to say then chose my recliner and IV stand where I would be parking myself for the next five hours of drug drip, drip, drip. This time I came armed with good snacks---banana, carrots, dark chocolate, anti-nausea pops, ginger candy and lots to drink. This time I also sucked on ice chips when it came to the hard-core drugs to hopefully keep them from affecting my mouth and throat and (fingers crossed) avoid those awful mouth sores of last time around. 

My nurse was very sweet but the IV insertion did not go so well. Despite the usual admiration of my veins (I guess I am very gifted
in that department) she had trouble getting it into the vein in my left wrist. 
"Does it hurt?" she was asking. 
"Ya, a little I guess." 
"If it hurts and is not in there perfectly we could seriously damage your vein so you need to tell me." 
"Yikes, okay ya, it hurts pretty bad." I need to stop being such a tough guy. 

So she came at me with the IV needle again. This time in the right arm, right in my inner elbow so I couldn't bend my arm for five hours, but at least it was safe there. 

My mom and I visited with a 75-year-old woman who chose the recliner next to me. She was sweet. She had beat colon cancer and now was back with a relapse, this time metastasis to her kidney. Her attitude was fantastic and you'd never guess that she was in her mid-seventies. We talked about her granddaughter, adopted from Ukraine. She showed us pictures. She told us about how her husband is always forcing her to eat and bought her a hard-top Volkswagen convertible upon her diagnosis. So cute. 

The time passed fairly quickly. We talked. I read. My mom went for a walk outside. I snacked. I watched some of a movie---"Crazy, Sexy Cancer." Warily counting down to the moment when the last drug---the dreaded DTIC would be injected. But my nurse was prepared. She outfitted me with plenty of ice packs to cool my burning vein as the drug entered. It wasn't so bad. She slowed the drip and diluted it with saline fluid to make it bearable. But of course that adds time. Nearly five hours later the beeper went off that the last bag was done. I cheered. My recliner neighbor and I were in a race as to who would finish first. But unfortunately for her, she had to take home a pump that would continue to inject her chemo cocktail for another 46 hours. I guess I don't have it so bad. 

I was a bit loopy and flushed but STARVING. So my mom took me to my fav place: Plan B in Simsbury. I needed food stat so we started with homemade salt and vinegar chips and I finished with a "pink" West Coast burger, complete with fried egg, avocado, and olive tapenade spread. What better way to soak up liters and liters of drugs? 

Then I slept. And slept, with Sammy by my side, as Craig and my mom took care of the housekeeping and cooking dinner. 

So far, so good. I've been nauseous and tired, but I have drugs for the nausea and Tylenol PM to help me sleep through the body aches. And this time I have tried a new, softer laxative to hopefully eliminate any mistakes in the GI arena this time around. At least now I know that the pain is only temporary and can look forward to a few days from now when my body will be recovering once again---hopefully sooner rather than later. 

Tuesday, June 2, 2009

Just Say No To Hairballs

When Sammy brought over her slobbery tennis ball for me to throw and wrapped around it was a big wad of matted hair---my hair---hanging off it and her pink tongue I knew it was time to end this slow, painful, hair follicle dying process. The fistfuls of hair strands showing up everywhere were just too much to handle, my weak scalp tingling and burning was getting just too painful.

My sister was coming over to hang out so I called her and asked her to bring some hair cutting shears. Yes, I asked my sister who body checks unsuspecting victims on the rugby field to come over with a sharp object to attack my head with. She ripped it out when we were little so why not cut it now? In all seriousness, I wouldn't feel more comfortable with anyone else doing it. 

I was still wavering on what I wanted to do as I was running my hands through what remained of my hair and coming out with more and more strands wrapped around my fingers. Kristen and Craig convinced me that in a situation where I have no control over anything, this was an opportunity to take control. It was falling out no matter what, so why not speed up the process and make it more bearable? "Fine. Let's do it." But I would only do it if they would first cut me a mullet. 

So I cranked up some Dave Matthews and we set up a mock barber station on the back porch. Craig pulled out the extension cord and the buzzers and Kristen got the shears ready. It started with the snip of a ponytail and it it all went down, er, came out from there. Check out the evolution of my spotty, mangly, thinning long hair to my new chic bald 'do --- with some business in front/party in the back and classic braided rat tail action in between. I only wish we had shaved in racing stripes. 

My scalp feels free and my head feels liberated. It's now much more bearable to watch tiny stubbles fall to the pillow as I continue to bald than drowning in a sea of choking, long locks. Bald is beautiful. It'll just taking some getting used to the fact that I'm the one who's bald. And bonus, Craig and I look like twins. They say the longer you're married the more you start to look alike, right?