Sunday, May 31, 2009

Here's To You, Mr. Hodgkin's

Because I've got weddings on the mind, this is a toast. A toast in honor of what I consider to be a pretty significant victory. A "f*@#$ you Mr. Hodgkin's" kind of toast:

Despite your indiscriminate efforts to invade my organs, your sick, twisted ability to grow and morph, multiply and attack my cells sending my lymphacites into crisis mode, I had a beer. I took a road trip. I slept in a cushy hotel bed. Despite your plots to destroy my good cells and corrupt my lymph nodes with your creepy cancerness, I slow danced with my husband. I fast danced with the girls. I celebrated, laughed and smiled as my friends danced their first dance. Looks like you're not so bad ass after all. Just try to break my spirit. You've got a impenetrable fortress of good friends, good vibes and a whole lot of determination to contend with. So this weekend was for you Mr. Hodgkin's ... and it felt good to spite you. 

If you asked me a week ago if I'd make it to Sarah and Adam's wedding my answer wouldn't have been too certain, but we made the trip and it felt amazing. Like three amigos, Melissa, Craig and I piled into the Corolla for the long ride to Rochester, NY to see Craig's childhood friend (who has grown to be a dear friend of mine for as long as I've known Craig ... and that's a long time) say her "I Dos." At the advice of Dr. Dailey, I was cleared (and encouraged) to go, with the orders for many stops along the way to stretch and walk and get my blood flowing. Following doctors orders, we made the trip in six hours each way. I sprawled and napped in the back for the majority of it so for me, it was a breeze! 

The wedding was beautiful. They said their vows in the warm sun by a country club lake. Sitting there watching them beam at each other flooded me with all the memories of our own wedding and how lucky I am to have this amazing man right be my side through all of this. Don't weddings make everyone sappy? 

Most know how much I love an open bar and not being able to take advantage felt a bit foreign, but I made do with Shirley Temples (a forgotten favorite) which in fact are also included in an open bar setting. Who knew? But the doctor told me that I could have the "occasional
 glass of wine or beer." I haven't had a drink in about a month so I figured this would be the time to cash in my one alloted adult beverage. But what would I choose? With much deliberating among the crew of us it was decided that mixed drinks have too many variables and the wine glasses were too small to make my one drink worth it. So beer it was. Ah, but what kind? I opted for something with flavor and girth. Something that I could sip over the next few hours so I wasn't the odd man out without a drink in my hand. I went with Killian's Irish Red and it was glorious. It lasted me through dinner after which I switched to the real hard stuff ... the Shirley Temples, extra cherries. 

I did the YMCA, my newly minted biopsy scar beaming in my underarm. I did the Twist with three hilarious and always-a-good-time ballerinas. I sang the Sandy parts in "Summer Lovin.'" I even bumped to Sir Mix-A-Lot. This baby's still got back. We laughed over prime rib and wedding cake and smiled and hugged with the newlyweds and their fam. 

But I knew my limits. The clock struck 10 p.m. and I felt like I would actually turn into a pumpkin. It was time. My body doesn't give me much room for questioning anymore so we left the dance floor just as the ties were coming undone and the party really getting down. Craig and I said our goodbyes and thanks and retired to the hotel where Tylenol PM and a luscious King sized bed were the perfect remedy to my tired, achy bones. 

I do feel bad for the housekeeping crew left to clean up the wads of hair I left in the bed, in the shower, on the bathroom floor. I did my best to gather it but it's becoming a losing battle. It's now coming out in baby pony tail-sized chunks. I'm afraid they'll think a scalping took place. But I felt pretty that night.
I felt happy. I felt satisfied and proud that no matter what, when there's a dance floor to tear up, passed hors d'oeuvres to demolish and the chance to sway with Craig to mushy love songs involved, you can't keep this girl away. 

Friday, May 29, 2009

Sometimes I Forget

It's a strange thing having this internal disease with no external signals to the outside world ... at least for as long as the majority of my hair hangs on. I've been feeling "normal" for the past couple of days, like a regular person capable of regular everyday things like eating, walking, working, laughing, playing. Sometimes I just plain forget I have cancer. But then there comes a not-so-subtle reminder like tremendous bone pain from the Neupogen shots, a chunk of hair in my fist, or being out to dinner when everyone else around me orders a frothy brew in an icy glass and I am forced to order a soda water with lime. Do you know how much I want a Sam Summer right now? These things that were regular parts of my life --- a painless existence and a brew (or a few) on a Friday night --- are a thing of the past since Mr. Cancer entered my life. 

As much as I forget, it can also be omnipresent at the weirdest of times. Today I drove past a woman my age jogging along the Simsbury greenway and I was so angry at her. "What a bitch," I thought. Angry that she can joyfully jog in her cute little shorts and racer bank tank, not a damn care in the world. Like it was her fault that I have cancer and can't walk up the stairs without getting winded anymore. Then I'm at CVS and the woman asks, "Do you have a CVS card?" and all I hear is "Do you have cancer?" I get this paranoia like people are looking at me like there is something wrong with me, like they know that I'm buying this Sobe water because I'm feeling naush and faint and am afraid I won't make it through my blood test without fainting. Ahhhhh. Everyone knows! But then I snap out of it and realize of course they don't know. Maybe they're looking at me strangely because I haven't showered in two days and my glasses are completely crooked because I keep falling asleep with them on and warping their shape. 

Then I get to the cancer center for (another) CBC finger prick blood check and it still doesn't seem real. Every other patient there is wrinkled and white haired. Very nice people I'm sure but I can't relate to their talk about forgetting their walker or the gifts they got from their grandkids. It can't be real that I'm actually a patient too. All the nurses, lab techs and receptionists already know my name and laugh and joke with me when I come in, but I realize that I'm not that memorable ... it's because I'm the only person who looks remotely like me. Dr. Dailey keeps talking about all these other twenty and thirty-something patients he's treating, but where are they? All I see is a sea of blue (or no) hair. There was a guy next to me in the waiting area who looked about 18-years-old or so. I found myself morbidly hoping that he had cancer too; maybe we could talk. The nurse came up to him: "Do you have an appointment?" My heart lifted--someone younger than me is waiting to get injected with these poisons, too. But no, turns out he was just waiting for his grandmother. Of course. 

Sometimes even when I'm getting shots or having my vitals taken I feel like I'm just there reporting on a story, watching it from the outside. It's not really me going through this. This is for old, sick people, not healthy twentysomethings. 

But the bitter times pass quickly. I'm happy that there are more moments when I forget than times that I remember these days. And I'm lucky to have so many joyous distractions to help me take the focus off the bad stuff. I'm going to keep forgetting as much as I can for the five days that remain between "normal" me and my next chemo shocker when the body-bashing cycle starts all over again. 

Wednesday, May 27, 2009

Celling Out

Maybe it's just one of my weird neuroses, but I'd often get sunburnt on my scalp, or in the side part of my hair or along the front of my hairline where I didn't put the sunscreen high enough. When it would start to peel I couldn't help but scratch and rub it and watch the dead skin cells flake off like snow tumbling before my eyes. I had a similar experience today, but this time it wasn't burnt epidermis, but my hair itself. 

Since I've started working from home my personal grooming has taken a bit of a dive. With no one to impress but the mailman, I've been wearing my hair in an effortless knot on top of my head. But this morning I was feeling great and I had an appointment for a blood level check at the cancer center. So I decided that I would get all dolled up, actually blow dry and straighten my hair and wear pants that don't have an elastic waist. My goal was for the cancer center staff to not recognize me I looked so good compared to the sweat pant-wearing, makeupless wreck that rolled in last week. 

As I started to do my hair, I realized that all that time it was tied in a floppy pony tail it was slowly becoming detached. I ran my fingers through my hair in front of the bathroom mirror and they would come away wrapped with fistfuls of hair strands. I'd run them through again --- more hair wrapping around my fingers, getting caught in my wedding rings. It was disgusting, but just like picking at a sunburnt scalp, I couldn't stop. I continued to finger comb my hair until the fistfuls subsided to scattered strands. I knew that my hair would likely fall out as a result of the cell-killing chemo, but I don't think anything can fully prepare you for it. The worst part? Two days before my ER visit and the beginning of this adventure I had just gotten a much overdue full highlight and haircut. $130 (before tip, eek) down the drain. Now my beautifully high- and low-lighted hair was escaping my scalp strand by strand. I wonder if I can get a refund? I took this picture today for memory's sake if in case tomorrow I wake up and it's all on my pillow. 

It started with the loss of my nose hair, which I have no objection to. Last week not only did my nose hair disappear but with it went all of the nasal membranes in bloody, tissuey chunks. Now the inside of my nose is like a squeaky clean and smooth cavern. And it seems that my head is on the same path. It's almost like I can feel my scalp releasing the dead hairs. My scalp feels super tingly like I doused it in a deep conditioning foam or slathered it in Nair hair remover. The more it burns and tingles, the more comes out with each finger pass through. I just want to end the itchy, tingly scalp sensations and the site of the hair balls. Gag. 

Despite this thinning-like-a-balding-man experience, I did receive very good news today. My bone marrow biopsy results were negative. That means the Hodgkin's cells have not creeped into my bone marrow!!!! (exclamation points justified today). This is great news. Dr. Dailey is still keeping me at a Stage 4b Hodgkin's Lymphoma patient, but we rejoiced together in the fact that it's much better to be Stage 4b minus bone marrow involvement. 

Not good news, but not unexpected news, my white blood cell count took a big dip. We track my blood activity now like some people track the New York Stock Exchange. I've actually started a blood cell portfolio. One week ago my White Blood Cell Count was 10.0, today it is 1.8 (normal is 4.1-10.9); my Granulocytes were 8.8 one week ago; today, barely existent at 0.3 (normal 2.0-7.8). If I was scheduled for a chemo infusion today they would not be able to treat me as my body would not be strong enough to handle the drugs. 

Now I understand why Dr. Dailey did not want me working in the hospital setting ... my body is inherently defenseless at this point. In steps Neupogen, white cell booster shots that will get me back to fighting strength. I got one shot in the arm today and have to go back in for two more doses tomorrow and Friday. Like Barry Bonds preparing for a big game, I'm taking in injections to pump up my body for next week's chemo attack. I'll take the shots and bathe myself in Purell until Friday's finger prick when hopefully my body is back in the disease fighting game. Ka Pow! 

Tuesday, May 26, 2009

Top 10 Ways to Get a Taste of the Chemo Experience


Top 10 Ways to Get a Taste of the Chemo Experience

From a Hodgkin's Lymphoma Survivor, age 22

10.  Set down a delicious array of food before you, then eat only wood pulp for several days

9. Throw up on your lawn

8. Each week at a pre-determined time, wake up, collect some bees and let them sting you, (for that "I can't seem to get a vein" feeling, apply one of the little brutes to your arm with scotch tape)

7. Throw up on your neighbor's lawn

6. Shave off your eyebrows, take out your eyelashes (except maybe 3) then Nair the rest of your body. Don't worry, the burning is normal.

5. For that fun Ativan feeling, wander into a room and ponder all possible means of the word Amazing. Walk out of the room, repeat.

4. Hang upside down from a tree until your face is cherry red, this will help with the dizzy/flushed, red faced feeling of Adriamycin

3. Lay around feeling like you got hit by a truck

2. Attempt to drink Ensure while you are nauseated. To become nauseated, drink an Ensure.

1. Congratulations, you've finished one chemo treatment, how many more do you get to do?

A Revolving Door of Smiles

Our house is like a tropical greenhouse of floral arrangements. Our refrigerator and freezer packed to the gills with delicious stick-to-the-bones home cooked favorites and sweet treats. A visit from the brown UPS truck has been a daily occurence and they're getting to know Sammy's bark. I am so incredibly humbled by the continued outpouring of thoughtful surprises that make me smile. From quote books, flip flops and cancer memorabilia to Broadway videos, comfy pjs, chemo survival kits and dry ice-packed meals, and stacks of heartfelt cards, every day has brought something that made me smile, laugh or cry (or most of the time do all three at once.) 

In one of the books I received, "I'd Rather Do Chemo Than Clean Out the Garage," the author comments that everyone should get hit by a truck just once to see how much they're cared about. It's totally true. Not that I'd ever wish that upon anyone, but it is true. Coming out with your cancer diagnosis is eerily like attending your own funeral, but you actually get to enjoy it, know what incredibly amazing people you have in your life and be humbled by how much they really care about you. I never knew how much my life affected others and how we're all so intertwined. It's been hard to understand that people are finding my story inspiring and hard to accept the outpourings of help but I'm realizing that that's what friends are for: to build you up and for you to lean on. 

Our house has been filled with lots of laughs and love. So many smiling faces have stopped by to share their support, hang out, make a quick drop off, or spend hours talking, laughing and relaxing. Whether its a game of Rummy 500 with my mom and gramma, a night of both cheese and chocolate fondue then classic Bill Cosby comedy with my brother and sister-in-law (and baby niece or nephew in the womb), surprise visits from family and friends I haven't seen in ages, or an afternoon on the porch in the sun laughing about bathroom humor and high school antics with some of the most amazing women that I know, my girlz, the healing powers are immeasurable. 

Sunday, May 24, 2009

Body Conscious

I guess it's really true that you don't realize what you've got 'till it's gone. Now I realize how good I had it as far as health goes. I never looked at a hill and thought, "I can't make it up that." I never thought twice about hopping on my bike and riding 25 miles along the greenway. I never got winded walking up stairs. In fact, I'd usually hop two at a time and always opted for the stairs vs. the elevator, whatever was the fastest route. I'd always plow past old people and pregnant women hobbling along in the grocery store frustrated that they couldn't just pick up the pace. I could get the six blocks from my work parking lot to my office lugging a laptop and projector skating over icy sidewalks in less than 7 minutes at my mean walking speed. 

Besides a severe case of pre-teen acne and all the orthodontic accoutrements that come with buck teeth (including the dreaded night gear) I was always a healthy kid. No peanut allergies, no asthma, no weird fears or disorders. I danced. I played sports. I never hit a physical challenge. I've never broken a bone in my life besides a pinky when someone sat on it in second grade and two fingers jammed in high school volleyball. I've had one overnight hospital stay for a quick ovarian cyst draining and was up and at 'em right after. 

Just a month ago I was a 26-year-old at the peak of physical health. Blood pressure perfect. Immune system like a horse (does that make sense?). At the gym at 5 a.m. before work. Running with Sammy. Hiking, biking, playing ball, boogie boarding, whatever. I never thought about my body because it just did whatever I wanted it to do without any complaints. Until now, my only physical limitation was the inability to go underwater without holding my nose like a four-year-old. Mild I know, but no less embarrassing at pool parties and on boat outings.

Now? Walking up the 12 stairs from the living room to my bedroom is like a Family Double Dare physical challenge. Carrying down a laundry basket? I thought I gave myself a hernia yesterday. Working for a nonprofit I would lug bins upon bins full of Arts Council schwag, giveaways, heavy, glossy brochures and magazines, 10-foot banners and metal banner stands and poles without questions. I'd maneuver a stacked hand cart with one arm and an armful of boxes in another down the streets of Hartford from presentation to presentation without breaking a sweat. Okay, I sweat, but those red shirts did not breathe! Lately, carrying the five pieces of mail from the post box up the driveway is daunting. I can't stand for more than 10 minutes without having to rest my loins. I haven't been able to feel the bottom half of my left leg for two months now. All the sensation is gone. I guess that's just what happens when you have swollen cancer masses filling your chest, pressing on your organs and squeezing your veins thin. 

When I am better I will never again take for granted how lucky I am and how amazing the human body is. And next time I see an old lady pushing her cart in the grocery store I'll politely wait for her to turn down the aisle before ramming past her. I've never had a greater understanding of what it means to truly have your body, no longer your mind, in control.  

No matter how good I feel otherwise and how much faster I want to move I just can't do it. It's like that time when we ran out of gas on I-84 in a snow squall with a Christmas tree tied to the roof of the Blazer. No matter how hard Craig pressed that gas pedal there just wasn't nothing left. Putt ... putt ... putt to the shoulder. 

Friday, May 22, 2009

Miss Independent Resurfacing

Accomplishments since Chemo Day One, one week ago today: 
  • I can eat grown-up food. It no longer has to be mashed and pureed like for newborns and old people.
  • Not only can I eat it, but when I do, it comes back out, on an increasingly more normal basis. 
  • I am no longer a wuss about taking pills. I used to have to hide in a corner and down an entire glass of water with each, most of the time choking them back up. Maybe I'll be swallowing raw by the time this is all over. I should invest in one of those cool Monday-Friday pill holders. 
  • My sleep schedule is moving back toward human from vampire time tables.
  • I walked one mile with my brother, Craig and Sammy to let Sammy swim in the river at the park. It was a very, very slow walk but I did it. Couldn't make it back though, even after some rest on the river bank. Sat on a gate at the park while the boys walked back and my brother came to pick me up in the air conditioned car to chauffeur me back home. But again, I did it.  
  • My mouth is no longer a fortress of sores, burns, pulsing gums and achy teeth. I can not only drink water, but also pomegranate juice and ginger ale. However, I am still sticking with the baby soft bristle tooth brush to stay on the safe side. 
  • I drove myself to the cancer center today. First time behind the wheel since my biopsy. I did not crash, pass out or back into anything. This is good. I walked in by myself and out by myself and felt strong. Granted it was only for a finger prick to test my levels but it was a big accomplishment. 
  • I am learning to listen to and understand my body. Not that the signs are very subtle, but I used to push through things probably more than I should have. Now when I am tired, I nap. When I am hungry, I eat. When I am thirsty, I drink. When I feel fevery I take Tylenol, a cold compress and go to bed. Brain and body are starting to get in sync. 
  • The thumbs up/thumbs down scale that Craig and I have been using to gauge my state of being at any moment has been warranting more ups than downs. 
I'm not naive enough to think that I'm 100% better, but comparatively, each day feels like a massive improvement from the one before. I still have nightly fevers and sweats, fatigue and chest pain but that's NOTHING compared to what I felt earlier this week. Right after the chemo I took things minute by minute, then hour by hour, now it's day by day and that's a good thing. Now I'm focused on building my body to peak shape for it to get whopped with the next dose 12 days from today. That ABVD don't know what it's in for. 

Thursday, May 21, 2009

Constant Companion, Addendum

I guess we're not the only ones that realize the healing powers of dogs. This morning Craig stepped outside on the porch and there was a UPS package labeled "Sammy." She got her own special delivery! A care package full of specialty doggie treats like dog popcorn, a delicious bone, a "luscious" carob bar and even a Doggie Brew bottle of dog beer. In it was a note from Craig's principal and several fellow teachers:

"Dear Sammy, 
Take good care of Mommy and Daddy, and enjoy your treats." 

Signed by his "Aunties." 

So adorable. She couldn't have earned it more. 

Constant Companion

I always knew that I wanted a dog but never knew how much I needed a dog. Our 55-pound yellow bundle of lab energy has done more for me than painkillers or anti-nausea drugs ever could during all of this and I know that her gentle nuzzle and wet kisses will be healing me all the way through. 

The timing could not have been more right for Craig to finally cave to my whinings for a dog, and it's truly kismet that we found Sammy, a beautiful pup stuck in a crummy situation hundreds of miles away in Tennessee. She's only a year-and-a-half and we're her third family. From abandonment at a kill shelter to being scooped up by a loving family with the unfortunate luck of a son allergic to her and therefore many days and nights spent alone in a garage, to a
n impulsive adoption by a crazy couple in Connecticut (us.) We've had her only three months and can't imagine our life without her. Sammy has my husband, Mr. Anti-Dog, wrapped around her paw and they are truly the best of friends. 

For me, her companionship has meant that I never have to be alone. I get constant love and friendship. I don't have to talk about how I'm feeling or explain why I doubled over or 
can't get off the couch. She just knows and nuzzles up next to me wherever I am. She'll nap with me for hours; she'll sit by my feet outside in the warm sun; she'll wait patiently for me to get my shoes on to take her outside to play. When I'm working on my laptop she shimmies her way under my arm and rests her head on my leg while I type and design. Right now it's 3:45 a.m. and where's Sammy? Not in her dog bed but downstairs with me cozied right by my side (you can see her snout under my arm in the photo.) She's up with me all hours of the night checking in to make sure I'm okay in whatever bathroom I might be in, nosing her way through the door, following closely at my feet as I shuffle like an elderly woman around the house. 

And the most important thing she does for me is gives me purpose and forces me not to mope. Cancer or no cancer Sammy still has to eat, go out, she still craves a good session of tennis ball toss and a belly scratch. She doesn't ask for much and I couldn't be happier to please her. A million ear scratches, pig ears and organic doggie treats could never pay her back for the way she warms my spirit and makes me forget the pain. 

I had come across this New York Times column several weeks back, before I had any clue about the cancer growing inside me. It struck me so deeply that I started bawling and forwarded it to Craig at work. Maybe deep down I knew that me and Sammy would also be learning to live in the moment together just like the author and his Bijou de Minuit.    

Wednesday, May 20, 2009

A Beautiful Day for a Flogging

For those of you who are just in this for the prose and might be a little weak-stomached you may want to stop reading now (a lot of potty talk to come.) For those who want to know what really happens when chemo is coursing through your body here's the raw, uncut version. 

Basically, I feel like I went five rounds with Ivan Drago, you know the Russian boxing machine from Rocky IV with a punch so powerful he was able to take down Apollo with a fatal blow? Ya, that guy has been punching me in the gut, back, jaw, head for a few days straight now. Or maybe it feels like flogging. Thankfully, I've never been flogged, but I feel like this is how your body would feel after a flogging. The good news is that this means the chemo is working. It's fighting a sick battle in my body and unfortunately the Hodgkins is still real strong at this point and fighting back real hard. I get to reap the benefits of this internal battle of good vs. bad cells vying for eternal domination of my being.

Today is much improved actually. I'm getting conditioned to Drago. But Monday and Tuesday?Terrible, horrible, no-good, very bad days. The mouth sores only got worse to the point where I couldn't eat or drink anything without being in incredible pain. It's sore from my gums down into my esophagus as the chemo eats away at the fragile tissue. Then what I could eat never came out the other end. I'd been walking around with a bowling ball in my belly for three days. Hurt to sit up, hurt to sit down. Basically I was FOS as they call it (full of shit).  So I prayed for a brick. Be careful what you wish for. 

One laxative too many and last night was a nightmare. I woke up from my Tylenol PM coma the first time to a now customary drenching night sweat and an explosive call to the latrine. I continued that cycle about every hour on the hour all night long. Sammy following me to the bathroom every time. We tried out all three bathrooms in the house to switch it up. I had strategically placed reading material in each so as to have a different novel going depending on which toilette I would like to explore. Though most times it was whichever was closest. I guess I got what I was asking for, but I was hoping for more of a happy medium. I got all or nothing. 

Felt a little better this morning. Was able to muster a smashed banana and scrambled eggs with cheese (this has become my diet mainstay). I was still very achey, woozey and tired from no sleep so my mom came with me to the oncologist's for today's check up. My blood work was okay but I am dipping further into anemia so need to be conscious of getting more iron into my system. White blood cell counts are good. Basically Dr. Dailey told me that all the symptoms I'd described --- fatigue, aches, chest pain, chills, mild fevers, mouth stores, constipation, diarrhea, skin discoloration are all to be expected, which oddly made my mom and I feel a whole lot better. Going through this it's hard to know what your body is "supposed" to be doing and what could be signs that the system is breaking down. It's really an odd construct when you think about it. I need to poison my body in order to get better and everything that has a good side effect also comes with a bad one. The pre-chemo anti-nausea drugs have kept me from vomiting, but they're also what bound me up. The A in ABVD is working to kill the cancer cells but also causes severe back pain. It's give and take I guess. 

We left the cancer center feeling positive, albeit I could feel something brewing inside. We had to stop at CVS to pick up a couple of things, including a phone (finally investing in a land line since I'm sick of important doctor and work calls getting dropped) and a toothbrush soft enough for my mangled baby gums. We're in the toothbrush aisle and I could feel the wave. 

"Mom, I've gotta find a bathroom." 

"I don't think there is one." 

"I gotta go. Drop the toothbrush. DROP THE TOOTHBRUSH!" 

I frantically glance around CVS, no immediate signs of a restroom or even an employee to ask. No time to waste. Must find bathroom. So I book it out of there. My mom chucks the toothbrush in another aisle and out the door we go. Mind you, I haven't moved faster than a snail's pace in over a week but I was hauling to the coffee shop next door driven by the hot, scary feeling of impending bowel doom. 

I plow into the door of the ladies room to a cheery, "Just a second!" God damn it. I don't have a second. Breathe. I can hear the lady washing her hands, not a care in the world and then running the hand dryer until every last droplet was gone. Really? Reaaallllyyyy? Finally the handle turned and I was saved. I cannot speak about what happened in there, but let's just say that was a close call. 

My mom, the angel that she is, walks me back to the car and goes into CVS to pick up my goods. I find the one position that is comfortable, legs hanging out the window, curled in a reverse fetal position breathing through the s-pains until she comes back out. My house is only 10 minutes from this CVS but of course today, of all days, there is major construction on Hopmeadow Street, traffic stopped to a dead halt as they let through only one lane at a time. I'm sitting there with the cold sweats and s-pains like I've never had before longing for my own bathroom. 

"Karin, calm down," says my mom. "At least it's not like you've gotta take a shit or something." We laughed as we watched the asphalt truck pour a dumpy, black substance from a long metal spout onto the steamy street. Ah, symbolism. You can't make this stuff up.  

Monday, May 18, 2009

Beaten But Not Broken

I guess I was bound to hit a shitty day along the way. I was a little pompous over the weekend, inflated by steroids and decadron. Today, without them, I felt like I got hit with a truck driven by a truck driver that made no attempt at braking. Forward, backward and forward again. 

In short, my body is extremely achey, especially my back. I've been woozy, seeing stars, eyes burning and very uneasy. I was able to get some work done this morning which I was proud of but by the time of my bone marrow biopsy appointment I was like a wilted balloon. Food no longer tastes or smells the same and my mouth is beginning to feel very raw and sores are developing as the chemo attacks those soft tissues. Juice, tea, ginger ale all feel like a flaming Sambuca shot going down. But I have to drink lots of fluids at the risk of a developing UTI. What a conundrum. A special "for oncology patients only" mouthwash helps a bit to calm the throbbing tissue but I hope this is a temporary sensation. 

My mom and sister took me to the Helen & Harry Gray Cancer Center at HH for the bone marrow biopsy. Shaky, flush and uneasy I stumbled into the center on their arms and careful watch. They took blood, a lot of it, and usually it doesn't bother me but today ... I was going down. The fellow who would be doing my biopsy was explaining the procedure and all I saw was stars. I had to interrupt her with a "uh, I'm feeling pretty woooooozy" as they jumped to lay me on the exam table. 

Helen, my favorite oncology nurse, came in with an IV of Adivan to ease my nerves and the doc began the biopsy procedure. Long needles jammed into my rump to numb up the area felt just fantastic (oozing sarcasm). The numbing took longer than she had expected and she had to go back in a few times with more Novocain as the pain was much stronger than the "pressure" I was supposed to be feeling. The goal was to extract some bone marrow with a needle aspiration. That part went fairly smoothly. It was the piece of my hip bone that they needed to extract that wasn't so straightforward. 

She had an awful time breaking off a chip. "Do you work out? You have such strong bones," she kept saying. "It's so much easier with elderly people ... they're so much more frail." 

In my head: "well I'm not frail, and jamming into my hip bone with this knife is hurting like a son of a bitch." Out loud: "ya, I guess I do have strong bones." cursing myself for loving milk, those calcium supplements and hard workouts. 

The pain subsided but I could feel the pressure and hear the sound of her chipping away at my hip. Then I hear the conversation between her and the pathologist. The sample was crap. Great. "Sorry, we've got to go back in again." More jabs, cracks and pulls and they finally got a little grain-of-rice size piece of bone for examination. 

On the way home all I wanted was a Happy Meal from the golden arches. I haven't had fast food in over three years but I needed comfort fast so Mom pulled in for me. It was delicious and I even got a purple squid toy. 

Loopy and confused coming down from the Adavan, the ride home was a blur but I woke up on the couch to my mom and sister who had cleaned the kitchen, made the beds, watered my plants and had supper going .... ahhhhh, content. Then Craig came home and the four of us ate a dinner that went down without too much mouth pain and he helped me to try out the new mouth rinse Dr. Dailey prescribed to soothe my raw gums. 

Dr. Dailey said that there would be bad days and this would be expected. The only thing that makes it easier is that I got through this one and have every hope that tomorrow will be a better one. 

Sunday, May 17, 2009

In the Words of JT

This entry is going to be a bit of a love fest but I've got to gush a bit. James Taylor's "You've Got a Friend" lyrics have never resonated so much with me as they have over these past couple of weeks. I am truly so humbled and comforted by the tremendous outpouring of support from my amazing friends---both close and distant, ones I talk to every day and people I haven't talked to since middle school. My co-workers (current and former), complete strangers that I've connected with on online cancer support sites, neighbors, and oh, my incessantly loving family---on all sides. 

Getting whopped with a cancer diagnosis isn't so bad when you have so many people there waiting to catch you when it all gets a bit overwhelming and even more there to help build you right back up after you've fallen. My nausea is no match for a surprise visit from the most energetic woman I know, Judy, complete with pints of ice cream, some personal singing performances and oodles of good, old-fashioned Broadway musicals on VHS for me to watch and sing along to. 

My fatigue fades when our oh-so-caring neighbors pop over with trays of stuffed shells, salad and lemonade for dinner enjoying shared stories with them and their kids (the cutest kids EVER), watching our hurricane photos on a slideshow and playing with dry ice over creamy ice creams with chocolate sauce. Who'd ever think that my car smashed into their garage on its own accord the second day in the neighborhood? That's what you call forgiveness. 

And the influx of heartfelt e-mails, Facebook messages, voicemails, chatting sessions, surprise packages, frozen meals, flowers and get well/kick cancer in the ass cards have each touched me in ways I can't get into words. I've always treasured those close to me, but the power of the human connection is more real than ever to me now. I think that realization has been the greatest gift of all. How could I be so lucky? It gives me an even greater zest for life and a determination for beating this so that I can spend the rest of my life giving back to all those who helped me through and those that I haven't even met yet. 

Saturday, May 16, 2009

A Good Day

First post-treatment day and I'm happy to report that all went well. No nausea, no barfing, no weird reactions, fevers or anything. This is a very promising sign that chemo is no match for my bod. Ha. Felt a little naush (that's short for nausea) late this morning and a bit this evening but at the first wave I popped a Compazene and all was well. The docs certainly supplied me with a strong arsenal against any symptoms. Exlax and softeners also came in handy, but I'll spare those details. 

I felt pretty strong today, which they said would be expected as a result of the steroids that I'm on but it felt fantastic to have some energy back. Had a great visit with Melissa, Kyle and Leah this morning who came bearing a very thoughtful basket of goodies, including chocolate, my favorite Moscato, games, teas and music, plus, my absolute fav: a cheddar everything bagel sandwich from Brookside Bagels in Simsbury---can't beat it. And, Dr. Dailey would be proud of the high sodium content and greasy sausage patty. It was great to talk and laugh and pass the hours with good friends. 

Then I just had the incessant urge to walk. Needed to get some exercise, so we headed to the dog park with Sammy. Jam-packed today so she got to sniff up all types of dogs and beat them out on the race to any tennis ball thrown within her vicinity. No one can touch her speed. We hiked a little through the trails in the park which felt great to have my blood pumping and to not feel short of breath after just a few steps as I had been. We let her jump in the river for her first swim and that was very exciting to watch. She's got a mean doggie paddle. 

A solid lunch and nap then a trip to Barnes & Noble and Best Buy. All-in-all I'd say a very good day for a chemo virgin. 

Friday, May 15, 2009

Chemo Day One

I've always been an overachiever, a goody two shoes of sorts. In middle school when we had to do a report on an historical figure, I didn't just write the requested double spaced 2-page paper. I chose John Brown, wrote a lengthy study on his life and made my Dad drive me to the remains of his birthplace where he was my videographer. I sat on John Brown's tomb stone and read the report, while offering a video tour of the grounds of Brown's birthplace. Then on report day, the teacher popped it in for the whole class to watch. What a kiss up. I can't believe I never got beat up. I subsequently did this in Home Ec class years later for which I created "Karin's Cooking Show" (again with Dad behind the camcorder) and chronicled the lasagna cooking process, complete with a choreographed Vivaldi Four Season's background soundtrack. Needless to say, I was never happy with an A- or a 3 out of 4 on a scoring rubric. And that's translated into how I approach my career and pretty much everything in life (for better or worse).

Apparently that even translates to my cancer achievements. Normally a 4 out of 4 is what I strive for, but in this case, I would have been happy with a 1. Today I got my official staging. I have been diagnosed with stage 4b Hodgkin's Lymphoma. That's 4 out of the 4 stages----so in this case, 4 out of 4? Not such a good thing. And I've even got the "b" thrown in there vs. regular stage 4 to put me over the top. Kind of like those "A+"s I loved to see in red on my papers through high school. My oncologist staged me at a 4b because the PET Scan revealed in addition to my neck and chest (which we already knew about), cancer in my lymph nodes in my abdominal area, inflamed in my spleen and "hot spots" in the bone marrow of my sternum. I'll be undergoing a bone marrow biopsy on Monday to confirm if the Hodgkin's cells have in fact wormed their way into my bone marrow. Despite being a stage 4b, the treatment plan doesn't change. It's just further solidified that I'll be going through 6 vs. 3 cycles of chemo for a grand total of .... 12 infusions over six months. Also solidified is the decision that it was too risky to delay my treatment for the time needed to pursue embryo freezing options. A team of doctors made that tough decision for us. Getting me better is the number one pursuit now. 

So we decided to start it up today. It was great because I really had no time to get anxious about it. My oncologist filled me in on all the staging news and said, "So .... how 'bout we start this afternoon?"  Today I received my infusion in Hartford (at work, weird) at the hospital's Helen & Harry Gray Cancer Center. The place was a buzz with activity. I was so taken back at how many people there were from all walks of life. All colors, languages, ages, stages of cancer --- some without hair, some in kerchiefs, but everyone seemed in very good spirits. Each 
group room was full with people talking together while their IVs dripped, several private rooms were filled with more patients and their families. The Center is beautiful. I was struck by these fantastic kinetic sculptures they have hanging from the ceiling---yellow, blue and orange feathers in beautiful patterns set on intricate thin metal webbing that spun at the slightest of air gusts---very therapeutic. 

Who shows up in the waiting room but Craig, then my Mom ... and my Dad! The whole crew got out of work to be there with me and it meant so much. The whole thing was quite overwhelming and it was perfect to have my mom and Craig taking notes, my mom's medical knowledge helping so much in keeping straight all my pill-taking orders, side effects, etc. as it all sounded like "wah wah wah wah wah" (a la Charlie Brown's parent's phone voice) to me, everything just kind of blended together. I was there for about 4 hours, though future treatments will be closer to 3. I got some serious anti-nausea premeds dripped into my IV then the four drugs that make up my particular chemo cocktail: ABVD. All was well except for "D." My veins do not like "D." It pretty much felt like someone was taking a serrated knife and repeatedly sliding it up into my vein. But that is an anticipated side effect. Basically it burns like an S.O.B. Applying a cold compress helped and so did dropping some F-bombs but I breathed through it and all was okay. I'll do better next time knowing what to expect. My oncology nurse, Helen, was FANTASTIC! (and I don't like to overuse exclamation points, but she deserves one). Overall, it really wasn't a bad process. The recliner was comfy, my feet were up. I got graham crackers and saltines and drank a lot of ginger ale. Bathroom trips were very frequent with all that fluid being injected. 

I left with a beautiful bouquet of flowers from Craig, take-home drugs and prescriptions for more drugs. My mom picked everything up for me and created a perfectly organized med tray on a random beach scene serving tray we have. It will help me navigate through the anti-nausea meds, steroids, stool softening, heart burn suppressing, mouth washing, fever reducing, energy increasing, take-this-at-night-so-you-can-rest meds. Such a huge help (again wah. wah. wah. wah wahhhh.). Reading the notes she wrote will help translate those voices. 

So I'm one day closer to feeling better and kicking the crap out of this cancer. 

Take that lymph nodes. 

Thursday, May 14, 2009

What Kinda Piña Coladas You Drinkin'?

I've heard people say that PET Scans are uncomfortable, claustrophobic, tedious and exhausting. All it did was put me to sleep, which pretty much anything does these days. I had this full body scan today so that my oncologist can see if there are any other tumors, swollen nodes and masses spreading their evilness anywhere else in my body. This will help to accurately stage how far along the Hodgkin's Disease is in its course. 

I did naively think it was going to be an in-and-out procedure. I guess I didn't get the memo to carve out a couple of hours and bring some reading material. My PET Scan technician, an Al Franken glasses wearing look alike (minus the hair) talked me through the whole process. A process that I've learned I'll be going through several  more times once I start treatment and even years into remission to be sure there's no more cancer creeping in. We talked about my lymphoma and it turns out we share an oncologist and he's been in remission for two years. It was very comforting to hear his story and reassurances. "You've just got to be positive and lean on your family and friends who you really learn to appreciate more than ever," said Franken. 

He injected me with some electromagnetic craziness and had me lay on the bed for over an hour to let it course through my body to help more accurately illuminate my body during "picture taking" time as he called it. I wished I had my book, but he gave me a TV remote. Now that's something I never get in my own house. I'm surprised I knew how to use it ... I think ours is attached to my husband. I switched between Home Improvement, Mr. Roger's Neighborhood (an episode about adoption, ironically), Jerry Maguire and some cheezy Keanu Reeves surfing flick. All the while I had to down a quart of this thick, milky, chalky substance that would help to illuminate my GI tract. I don't know how well it illuminated it but it certainly stirred things up and almost traveled right back out from where it came in. Franken told me that it's not medicine, it won't taste bad ... it's just like a pina colada. I don't know who's mixing his drinks, but he needs to find a new bar tender. This man does not realize that I've been on not one, but two all-inclusive honeymoons with the BOGO hurricane package, each at hotels with several swim-up bars and have become a bit of a pina colada connoisseur. Ah well, I held my nose and choked it down ... the majority of it anyway. Maybe a maraschino cherry would have helped. 

The PET Scan itself wasn't bad at all. They laid me on the mechanical bed and strapped my arms down. This is how I sleep anyway, I like to have the sheets tucked as tightly around me as physically possible. When I was little, I would line all my stuffed animals up tight along my body under the covers each night before I went to sleep. For me, the blanket and tight straps was a comfort. With Josh Groban pumping through the speakers outside the machine I fell asleep about three minutes in and woke up 30 minutes later to the tinny smile of a kind nurse with braces on her teeth. 

"That's it?"

"That's it." 

And again we wait on results. 

Wednesday, May 13, 2009

Sweet and Salty Paradise

We had the "big talk" today with my oncologist, although it didn't feel like a "big talk" at all. I got acquainted with Hartford Hospital's Helen & Harry Gray Cancer Center in Avon, the place that I'll be going every week to soak in my chemo infusions and get my vitals checked and blood drawn throughout the process. It's like a little oasis surrounded by the beautiful nature of Avon. There was hardly anyone in the parking lot. Things were so quiet and the building looks more like a hotel lobby inside than a medical facility (it hasn't even been open a year). There were free refreshments, including a K-cup coffee maker and a super friendly receptionist and lab tech who Craig and I made instant friends with. The lab tech insisted that I am not allowed to cook, clean, do dishes or laundry tonight since taking blood can be very traumatic and that Craig would definitely have to take me out for dinner tonight, with ice cream prescribed. The place is as perfect as a place can be that'll I'll have to be at for several hours at a time over the next few months. 

The group chemo "lounges" have cushy, mismatched Lazy Boy reclining chairs, each with a corresponding IV stand where you'd normally see a reading lamp or an end table. There are shelves of well-worn paperbacks and curly-paged magazines. I wonder if I'll end up picking a favorite chair, or if I'll try out a different one during each of my 12 infusions? Some were pleather, some gaudy plaids, others varieties of faded gray, itchy looking fabric. Not exactly my decor of choice, but much less intimidating than the harsh plastic chairs I had been picturing in my head. I wonder who will be in the Lazy Boys beside me on each visit. 

My oncologist is positive about my prognosis and confident that I'll do well with the chemo, though he was careful to say that it won't be a breeze. We talked about side effects, scheduling, the weekly white blood cell and vital checks we'll need to do, which days I'll likely be strongest, which days I'll likely be weakest, the anti-naseau drugs he'll load me up with and other cancer-treatment-prep issues. Most notably, that I should eat some cheeseburgers and potato chips as I'm a bit anemic and my blood pressure is lower than it should be. Salty treats and burgers it is! He told me that my diet is too healthy and it'd be good to bulk up a bit. Don't hear that every day. 

It feels good to have a plan, to hear what I can expect and to now be able to prepare at least my mind for it, before my body succumbs to the ABVD chemo cocktail. He is hesitant to push my treatment off for fertility safeguards as I am at least at Stage 2 of the 4 Hodgkin's stages (though we'll know more after my PET Scan tomorrow.) Ideally, he'd like to set up my first infusion for this Friday (as in two days from now ... ) but he wants to explore every option for us and couldn't have been more empathetic to our situation, continually muttering ... "this is a tough one, yes, this is a tough one ... ." He'll be calling his cancer cohorts at Yale and other Hodgkin's experts for some insight and further opinions on if it's safe to delay my treatment or if they have any other thoughts on ways to preserve fertility without risking my health. So the conundrum continues. I guess this is what the saying "stuck between a rock and a hard place" means. 

In the meantime, I felt really strong today and had a day full of lots of laughs and positive vibes. I even rocked out to Hanson's "MMMM Bop" randomly playing on the radio---how can that not put you in a good mood? Took a solid nap on my anti-gravity chair in the warm sun on the porch and soaked it all in. Ate some fantastic salmon croquettes from my former director and a surprise casserole of mac & cheese dropped off from another former co-worker. My stomach feels very loved! To top it all off? We took Sammy to my favorite place: Tulmeadow Farm for ice cream. A scoop of kahlua and a scoop of mocha chocolate chip and the cancer was forgotten, for a sweet while at least. 

Tuesday, May 12, 2009

Fried, Scrambled or Fertilized?

In addition to dealing with what this diagnosis actually means, we also have to be practical at a time when practicality seems an impossibility. This week has been spent getting life in line in preparation for the start of my delicious chemo infusions (mmmm ... can't wait for the first chemo cocktail). 

One of those practical realities to face is fertility. If you asked me what I'm most scared about in this whole process? It's not the nausea, it's not losing my hair, it's not the poisons that'll be coursing through my body. It's the thought of losing my fertility. Having a family is very important to Craig and me and the prospect of the chemo killing my viable egg-making processes is downright frightening. Less than 20% of people who go through the ABVD chemo cocktail that I'll be receiving enter into an early menopause, but there are no studies as to how many people maintain some fertile functions but still have trouble conceiving. So, today was spent at a fertility specialist where he talked to us about the options that we have and the short time period we have to make a decision. 

The best option seems to be extracting one of my eggs, taking some of Craig's sperm, mixing them together in a petri dish and sending them to the freezer where the embryo will live like a baby popsicle until we're ready to start a family. Sounds easy, but to get to that point, I'd have to do self-injections of hormones tricking my body to produce eggs and making me slightly crazy, a minor surgery and the most crucial requirement: time. Something that I don't have much of. 

After a lot of talking with the doctor and nurses, Craig had the distinct pleasure of sitting beside me through a pelvic exam and ultrasound. I've never seen my husband turn that color. His face was a putrid shade of gray that only got more ghostly looking as we watched the inside of my cervix on the monitor and the doctor pointed out my ovaries and the swollen follicles within them via a very intimidating looking goo-covered probe. It took everything in me not to burst out laughing when the doctor broke out the infamous metal "duck bills" for insertion and Craig's eyes widened. Not many men get to bear witness to something like that ... he gets a gold star for the day. 

The medical decision now lies with my oncologist to deem whether it's safe for me to go through this embryo freezing process and push off my treatment for a few weeks. Once we get his determination, then it's up to us to make what's sure to be one of the hardest decisions of our life: risk waiting these next few weeks before starting to kill the cancer cells multiplying within me or risk the chance that we'll never be able to enjoy the miracle of having our own biological children. 

It's not a decision that we want to make---but we don't have the choice not to. 

Monday, May 11, 2009

An Rx for Chocolate

When my meds wear off it's like I have a whole new body. I feel asleep this afternoon and missed a dose of Motrin and now every joint, muscle and abnormal lymph node aches, I feel fevery and chilled at the same time. I'm grateful that the ibuprofen gives me the chance to function as a "normal" person but it's scary to feel what's going on when it's not being masked. 

Today I had my heart measured with an echo cardiogram to be sure that it is strong enough for chemo and to take pictures, video and audio of it to serve as a baseline reference during my upcoming treatment. The tech, Tracy, lubed up my chest with luke-warm gooiness, saying that the first patient of the day (me) is the lucky one who gets the not-so-warm goo on the probe (or whatever the technical term is for the roller-ball-type wand that she was pressing into and around my chest). It was warm enough for me. 

I got to watch my heart up on the echo cardiogram screen. I imagine that this is what it's like to see a baby growing in your belly and to hear its heart beat in a sonogram. However, my heartbeat sounded like crashing waves in an ocean. She would zoom in on each particular valve she had to examine and the sound of the blood rushing through reminded me of the washing machine on spin cycle. Each valve had a different pitch, quite orchestral really. It was fascinating---and a little creepy---to watch my heart thump large and small with its little valve wings flapping in the breeze of my chest. She pointed out the four chambers of my heart. Remember these from school? "Uh huh," I said. "Not a clue," I thought. I was never good at those body diagraming tests in biology. 

De-gooed I walked to my office. It'll be convenient having most of my test appointments at my workplace. Today was the first time that I've been back to the office in over a week. When I arrived everyone was upstairs at our monthly staff meeting. It was over half-way through and I debated (a lot) whether I should go in or not or if it would be too much to handle everyone looking at me at once. Not that I look any different, but everyone knows that I'm no longer just Karin. I'm Karin with Cancer. After some deep breaths and an internal pep talk I walked in. I got lots of smiles, gave a quick update on how I was feeling, "okay, just real tired," and the meeting continued like normal. "Perfect," I thought. I love how this group is so laid back and knows how to make me feel not the least bit awkward. I had lots of easy and honest conversations with my co-workers afterward which also made me feel so comfortable and at home there. 

The day went well until I hit the huge brick wall called 2 p.m. My body let me know very quickly that it needed to be horizontal pronto. I had gotten through my e-mails, had a very touching and productive conversation with my director about what my work schedule will be like, and finished one e-newsletter so felt a little accomplished.  It felt good to be a bit productive. 

On the drive home I was how do you say? A mess. I had a Whitman's sampler of chocolates from a very wise co-worker open for the picking on the passenger seat, listened to a very touching voicemail from a good friend, then blared Kanye West's "Th-th-th-that that don't kill me, will only make me stronger" blubbering like a baby as I merged onto the I-91 on ramp. 

Thank God for chocolate whip, chocolate-covered almonds and toffee chip delights. 

Sunday, May 10, 2009

Family Ties

My little sister is a college graduate. The same little sister who would rip the heads off my Ken dolls, drop kick me for stealing her body lotion and the same little sister who knows my intricacies better than most anyone in the world, spent hours playing assistant to my elaborate, imaginative choreographed plays or Indian vs. Pilgrim battles in the woods. I'm so proud of her and so lucky to have her. We couldn't be more different, but that's what makes us so close. Like ying and yang, we're on this journey together. 

Though it was a day after receiving this jolting diagnosis, I didn't want to miss her strut her stuff across the stage in cap and gown after working so hard to get this degree. Who cares that they announced her as "Christine" instead of "Kristen." As we all are so accustomed to, she was certain to pronounce her last name to the dean (Dub-RE-AL) but who would have thought he'd screw up "Kristen"? 

It felt so good to be with my whole family, sitting there in the warm sun on the campus of Keene State College in NH (okay, it was a little hot, especially for someone who can't yet wear deodorant in her left pit ... BO has a whole new meaning). My brother suggested I just cake it on reeeeeeaaaaaal thick on the right side to balance things out. I laughed so hard I couldn't breathe for a good 10 minutes. Nothing like a shoulder shaking giggle fit in the middle of a jam-packed graduation audience. I may have somehow fallen asleep in my chair, eyes shut behind my dark sunglasses, amid honking air horns and loud cheering sections. You know the kind of sleep---the one with the powerful head bobs that keep waking you back up. My mom told me I had some real solid head bobs and would keep catching myself. This was of course after my sister's name was called and during the remainder of the 899 other names that were called ... yes 900 damn graduates had to walk across the stage. I mean, it was very special to hear each individual recognized. 

At my graduation they skipped nearly all the speeches, stood all 4,000 of us up, the college presidents waving their hands at us like it was a magic trick and bestowed on us all of us the rights and privileges that come with holding a UNH degree as lighting struck in the background and rain drenched (literally drenched) all of us shivering in our hangy black gowns. Somebody screwed up on the rain back-up plan. 

I was still sore, achey and easily winded, as I still him today, and I suppose still will be until I start getting treatments and start getting better. But it's amazing how the love of your family can hold you up. Lots of laughs, hugs and comfort. 

Saturday, May 9, 2009

Maybe I'll Catch the Sunrise

Can't sleep. Probably shouldn't be awake at 5 a.m. Or worse at 3:30 a.m. when I first woke up, turned on our bedroom TV and was actually laughing (out loud) at Arsenio Hall on an old Leno episode (who I know is NOT funny). My poor husband. He needs sleep to recover from yesterday just as much as I do. 

So now I'm back downstairs on the couch where there's already the beginnings of a worn rump mark in my corner spot. I'm making a big dent in the Edible Arrangement my Uncle and soon-to-be Aunt sent and it is delicious, though I felt guilty (for about a half a second) breaking up the adorable daisy designed with melon ball and pineapple. I guess it's good that I have an appetite, albeit it creeps up at 5 a.m. 

I've been reading a barrage of e-mails that have come to me and Craig and am so unbelievably touched by the encouragement from all my friends, family, current and former co-workers. Not that I expected any less as I am so lucky to be surrounded by such amazing people, but I am so humbled by everyone's outpouring of confidence in me and positive encouragement.  

Friday, May 8, 2009


So it's confirmed. I have been diagnosed with Hodgkin's Lymphoma, a cancer of the immune system. 

I know I'll always remember where I was when the twin towers were hit. In my dorm room at UNH in between classes as our floor mates all started piling into our room to watch the news coverage huddled together. 

Now I'll always remember where I was when I got this news: with three cocker spaniels, a hot dog dog, a giant poodle, a black and a chocolate lab, two great danes, a furry, white mutt and Sammy at the Granby dog park. With a slobbery baseball in my hand and Sammy wagging her tail at my feet for me to throw it, I got the call from the oncologist. An odd place to receive a life-changing phone call, but the whole thing has been so surreal that it was almost fitting. 

I'm feeling better having a diagnosis and am ready to take on this challenge. I'm looking forward to getting better no matter what it takes. My oncologist is "very optimistic" and assures me that the chemotherapy is very effective and that I'm young and strong and will do fine. 

A couple more tests scheduled next week then Wednesday is the big "plan of attack" talk with the doc, me and Craig and the first chemo treatment by the end of the week. Feeling overwhelmed by the outpouring of support from so many people, relieved to know what's going on in my body and that there's a treatment, and anxious to zap these cancer cells out of my system. 

I will beat this. It's just a matter of pushing through the tough times.

The Sweaty Kid

Worst night sweats to date last night. I woke up twice during the night soaked like I had just biked 50 miles. Disgusting. I guess we'll have to change the sheets---again. The worst part is I still can't shower for another day. Things are getting pretty ripe. 

Bizarre dreams as well. I was scuba diving, but in Antarctica under so much ice. The whole group I was with was far ahead of me but I couldn't fit through the ice doorways they had cut to pass through. I scratched and hacked at the sides of these ice arches to try and scrape them wide enough for me to get through. I could see everyone far ahead of me; they had already passed easily through several ice arches but I was stuck. The weirdest part? Despite the ice; it was so warm in the spot that I was, like jacuzzi-warm and I thought, I guess I should just stay here and take some pictures, but I couldn't find my camera ... 

Talk about symbolism, or Motrin-induced hallucinations.  

Now I do something I don't think I'll ever get the hang of: more waiting. Just a few more hours until the hematologist's office opens and hopefully I get some news. At least I have Sammy to hang out with. Usually she has strict orders not to come on the couch. We tell her, "Couches are for humans and you are not a human." But yesterday and today I told her we can make an exception because I'm waiting on some big news. And she's been cuddled up to me ever since. Nothing beats a four-legged friend. She's so comforting and yet I don't even have to talk to her, she just knows exactly when I need a wet kiss and a nuzzle. 

Thursday, May 7, 2009

Pleasantly Drunk

"Your chariot awaits," said my nurse Kristen as the stretcher pulled up to take me to the Operating Room. With Craig right by my side and a little Asian woman, Lynetta, that took no bull as she plowed through the hospital hallways headed to Pre-Op. As Kristen said good luck to me her eyes were all teary and that worried me a bit ... what did she know? But, maybe it was just allergies. Or maybe she just felt for me as we were about the same age and I kind of stood out like a sore thumb compared to the other patients she was dealing with on my floor. 

The evening before, Dr. Jiminez showed Craig and me the results of the CT Scan where we could clearly see the swollen masses in my chest. They ranged in size from 3 to 5 cm and Dr. Jiminez pointed out how much more things were swollen on the left side of my chest than the right. You could see my jugular vein squished thin from the pressure of the swollen nodes as opposed to the wide open vein on the right. He assured me that nothing was immediately dangerous but that this swelling was of course a concern and we needed to rule out a malignancy (what I've learned as the nice way of dropping the "cancer" bomb). He also assured me that the procedure to pull out the swollen bulge in my armpit would be a piece of cake. 

Craig and I arrive in Pre-Op. The nurse told me that I had nice teeth (I thought, I haven't been to the dentist in almost a year, yikes). I told her she had a nice smile and we were friends. Craig and I joked and laughed about how much I wanted a cheeseburger and talked about how bizarre it was for me that technically all of these people swarming around me, taking my vitals, asking me questions, are my co-workers. 

Then the anesthesiologist arrived. Very funny, blunt and sarcastic man---I wish I remembered his name because when I get better I would like to have a beer with him. I told him that last time I had surgery I puked for hours from the anesthesia. He told me that medicine is much better now and that I would not get sick. He said that they weren't going to be putting a breathing tube in me for full sedation so as to not disturb the already delicate chest area. It would be just general anesthesia so that I could breathe on my own. "Basically, you'll feel pleasantly drunk," he said. "Sounds fantastic," I said with a smile. "Shoot me up."  

It was time to go. Craig gave me a kiss and I said, "No speech?" "No, I'll see you in a few," he said. He knows how to keep things light, which is exactly what I needed. 
On the way to pre-op me and funny-anesthesia-doctor man talked and he asked me if I was a teacher. I have no idea why he would think that. I told him that no, I actually work here in the marketing department. "Woah, we better do a good job," he said. We talked about how much the Courant stinks for reporting bad news about us but how he loved the ads my department places. He pushed open the doors of the Operating Room which felt like a cool 4 degrees. "Hey guys, she works for the marketing department so let's be on our best behavior." The crew of four or so nurses and my surgeon were there and laughed and joked with me as they set me on the operating table. 

Turns out my nurse went to UNH so we reminisced about college. Turns out funny-anesthesia-doctor-man lives in Simsbury and loves Elizabeth's Restaurant right down the street from me. Turns out the anesthesia nurse with a crazy name, something like Guadalajara?? (that's probably not it) goes mountain biking on the trail that starts at the end of my street. It felt like we were all meant to meet.  

Funny anesthesia-doctor-man started injecting whatever concoction it was that was going to make me "pleasantly drunk." He kept asking me if I was feeling any different and I kept saying that I wasn't. "Wow, I think you've had a few too many trips to the Cracker Barrel." (the local watering hole down the street from me.) I do have a markedly high tolerance for a little girl. I laughed. Dr. Jiminez wrote on me "left side, yes" in marker which is still there today and will be for the 48 hours that I can't shower. That's the last thing I remember ... 

I woke up in recovery asking for pain meds and very confused. I slowly came to and started to feel hungover from my pleasantly drunk state. The nurse helping me to "sober up" was wonderful. I kept hearing her telling the man sobering up next to me to take deep breaths and I worried about him. She told me he was fine and kept apologizing that it was taking them a long time to move me out. I told her that I had no idea which way was up and it didn't seem long to me at all. 

I came back up to my 12th floor room to greetings from Curtis, my PCA who I had been joking with all morning that I was going to escape earlier that morning when I was too antsy to lay down. He said he'd send out a search party. He was great. And also greeted by my roommate Linda ... she's worth a whole blog entry in herself ... that's for another day. 

My mom and Craig arrived shortly thereafter and they told me Dr. Jiminez said the tissue they got was a great piece to analyze and that everything went smoothly. We chatted and relaxed. Turns out Sammy had been puking all night long the night before (managed to hit every carpet in the house) so Craig went home to check on her and my Mom and I stayed and stayed and stayed until the hospitalist came by to discharge me. To my horror, she said that my blood pressure was too low to leave. I was so anxious to be home, in my own bed and own pjs. So I stayed through dinner, a mirror of what I had for lunch. It was decent. I had to have a whole bag of IV fluid and drink lots of water to get my blood pressure back up. After the news and then College Jeopardy (my fav) I was released with an Rx for percosets and an order to rest. No tennis for a few weeks, damn. No showers, no soaking baths and minimal range of motion so as to not over-extend my armpit. 

Now I'm home and now we wait. A lot is riding on the analysis of this 3cm chunk of tissue. Whatever it is, I'm ready. It's the unknown that's killing me.  

Wednesday, May 6, 2009


I was hesitant to start a blog in the first place because I thought, "who would find my life interesting?" Well, call it artistic inspiration. I suppose I've found my muse. Its name is lymph node. 

I'm writing from my hospital bed on the 12th floor of the High Building in Hartford Hospital. Ironic, it's my workplace, but I'm seeing it from a whole new perspective. What a way to understand the product I'm marketing---inside research. 

I was sent to the ER Monday night after myriad of symptoms showed up over the past few weeks. Every day they got worse and my doctor had no idea what was going on. Extreme fatigue, night sweats, big lumps on my collar bone, neck and underarm which turned out to be swollen lymph nodes which were working hard to fight some kind of infection. After new discoveries of more swollen nodes and no signs of getting better I headed into the ER. 

My doc was fantastic ... very smart, very positive and had exactly my same attitude: "this must be driving you nuts; let's figure out what is going on." She had me poked, proded and scanned and was determined to get me admitted so that I could get all the top care here in the hospital without having to schedule dozens of appointments with various specialists. 

A CT Scan was the test that showed the closest to an answer that I've had yet. They scanned my neck and chest and found more internal swollen lymph node masses in my chest and my mediastinal tract. The ER doc came in to give me the results. "24" was blaring on the 52" plasma TV (I lucked out to get a room with these brand new television donations which I had just featured a story about in the RxTra--irony). She's talking over the TV. My parents and Craig are there and the doc is talking through a big smile saying it looks like signs are pointing more toward Hodgkin's Lymphoma than an infection. I thought I heard her wrong. She's still going on about chemo and treatment and I had to ask my Dad to turn off the TV. She was so laid back about it. She grabbed my foot on her way out of the room and said 'We're going to get you better' like I just scraped my knee on the playground. At the time I thought it was strange, but now I realize I wouldn't want the delivery any other way. 

Fast forward to this morning as I await a biopsy procedure by Dr. Jiminez (who looks just like the overly animated father in Life is Beautiful--"Bonjourno Principesa is all I could think when I met this little energetic man) They're pulling out a lymph node from my left armpit to find out what might be going on.  And then we wait ... 

I've been anxious about deadlines, wedding planning, big fundraising events, but this takes anxiety to a whole new level. And puts everything else in perspective.