Tuesday, April 30, 2013

1st Runner-Up - Best Blogger


The May issue of Hartford Magazine containing all the 2013 Best Of Winners has hit the press. Turns out I was voted "1st Runner Up" as "Best Blogger in Greater Hartford." It's quite an honor to be sandwiched between Colin McEnroe and Jim Shea – two area writers that I greatly respect and admire. 

Many thanks to everyone who took the time to send a vote my way, and of course, for reading along with my story over all these years now. Thanks for helping to push me – both in my writing and as I work to shed this disease. Writing this blog is such a privledge and more healing to me than any medicine. The fact that people actually seem to enjoy reading it is a humbling and exciting bonus! So, thanks. I'm honored. 




Monday, April 29, 2013

Young Advocates Spreading Awareness

Check out this high school project our Diamond-side cousin, Halle, and her class partner, put together to spread awareness of Hodgkin Lymphoma. I am so humbled that she wanted to make this her project focus and honored to have taken part. 

The American Cancer Society estimates there will be 9,290 people diagnosed with Hodgkin Lymphoma in 2013 – a majority in the 18-40 age group. Compare this to an ACS-estimated 232,340 new cases of invasive breast cancer in 2013. As Halle and Vicky point out, Hodgkin Lymphoma is a fairly rare cancer, and I appreciate their efforts to educate and inform. 


Saturday, April 27, 2013

Gemzar Infusion 2

The chemo-absorbing offerings at BurgerFi.

I looked at the printout of my CBC bloodwork report with disgust. My platelet level was 63,000, down from 67,000 five days earlier when I was rejected from chemo. They were moving in the wrong direction.

My mom and I waited in the exam room to see what Dr. D would say, making our own hypotheses and tossing around scenarios as I tried not to cry in frustration. I was in bad pain that morning. It had come out of nowhere when I woke up. The pain was deep in my quad muscles and shooting through my pelvis. From the moment I got out of bed I was already cursing the steroids that cause intense muscle atrophy, my overzealous walking and water aerobics cockiness and the worry that the lymphoma was already trying to bust out of my bones again seeing as I’d only had one chemo infusion in a long time. Now, I was cursing my platelets’ performance: angry, teary and woozy from pain meds.

My heart rate was up – probably from the pain, Dr. D said. We talked things out thoroughly and thoughtfully, all three of us on the same page that I was between a rock and a hard place – or more accurately, cancer growth and death by bleed-out. Maybe that’s a little extreme, but everything seemed extreme Wednesday morning in that little room where the lights are too bright and the chair placement too awkward.

My platelets were technically too low to get another treatment. We learned from the first dose that they are very sensitive to the Gemzar, so if we whopped them again while they were down, we could only assume that they would be killed off even further. Very low platelets equal very high bleeding risk.

However, if I didn’t get chemo then we would really be falling off any kind of schedule and risk the chance that the infusions wouldn’t be effective. Here was my scientific theory: If we let so much time go in between infusions then are we just playing whack-a-mole? Let the cancer grow a bit, then come in and knock it back, then let it grow again, then come in and knock it back. Seems silly. The whole point of this little project I’ve gotten myself into is to abolish the lymphoma that’s rearing right now, knowing that the side effects might be rather harsh. Then, get me off of this when I start really feeling better and get back onto milder, more sustainable, lifelong treatments (or second transplant – eek.ugh.barf.scary.potential.).

Dr. D admitted that this was his worry as well. He wondered if we should push me a bit more. I looked at him with wet eyes and said that I was very disappointed in my platelets. We laughed a little and he assured me it wasn’t my fault and said he wanted to collaborate with Dr. O – see if he might agree that we should push a treatment. Would I mind waiting?

My mom and I took a place in the open infusion room, passing the time with a port flush and sed rate blood draw waiting for the NY and CT doctors to connect. We read and chatted, trying not to disturb the two older men filling chemo La-Z-Boys, one deep in sleep while receiving a Reiki treatment. I was so anxious. I don’t think I’ve ever wanted chemo so bad.

And, I got it. My two docs decided to hit me with a reduced dose of Gemzar as a compromise between not damaging my bone marrow too much and allowing the drug to keep working against the cancer. Fantastic plan! The chemo dripped over half-hour and we were out to enjoy the 70-degree weather and sun, both starving, me ferociously after the pre-chemo Decadron steroid.

Driven by my Decadron cravings, I was more than happy to introduce my mom to a new burger joint not far from the Avon Cancer Center. We sat on the patio in the sun and indulged in the high-calorie deliciousness of a cheeseburger, Parmesan herb French fries and custard milkshakes. The food absorbed the drugs within me and I immediately felt more stable. The pain began to subside as an added benefit of the steroid. We further balanced the unpleasantness of the morning with a trip to HomeGoods to poke around and search for curtains for our newly redone dining room. The day such a positive turnaround with good company, food, and shop therapy.

The continued “Special Karin Regimen” seems to have worked as well. I have been feeling great since Wednesday’s infusion. I even skipped much of the requisite chemo wooziness I most always feel for a few days after receiving any drug. I think we may have found my magic dosing. Sure, I’m tired and a little achey, but I’ve been up for lots of social events, seeing friends, taking Sam Dog for walks, and writing on our porch in this ridiculously nice weather. Yesterday’s bloodwork revealed my platelets climbed to 77,000! Hopefully that trend will continue and my bone marrow will be up for another Wednesday dose. 

Tuesday, April 23, 2013

Try Again Tomorrow


No chemo last Friday as scheduled. Here starts the “Special Karin Regimen.” We have no idea how my body will react to the Gemzar (Gemcitabine) so it’ll be a trial and error process – schedule and dosage determined by my body’s reaction. I have to learn to be more flexible than I thought I already was.

It was my platelets (the blood cells responsible for clotting) that took the hit. They were down to 67,000. Bottom range of normal is 150,000. It would have been unsafe for me to receive another dose, as decided by both Dr. Dailey and Dr. O as I sat in Dr. Dailey’s exam room waiting to hear what he’d decide to do. To get another treatment would likely knock my platelets down to the 20s after it took me to my low point and that could lead to dangerous nosebleeds or internal bleeding. Not worth it.

No doubt it is difficult when you get all geared up to get chemo and then it doesn’t happen. These days, especially, it takes a lot for me to get my mind ready to face it. I put together a snack pack and reading materials and plan my day around being at the infusion center for a couple hours. It’s an exhausting ordeal and even though I did not get chemo last Friday, I was almost as tired as if I had anyway from coming down off the build-up and just from sheer exhaustion – proven in my bloodwork.

But if my body wasn’t ready, it wasn’t ready. We have to wait for my platelets to come up on their own: there is no magic bullet to encourage them, only time. We will try again tomorrow, Wednesday. I have to keep my mind neutral. I may or may not get treatment. I may or may not feel like shit for the following few days. Sure makes it hard to plan for anything.

Positive news is that my other blood counts looked fine at Friday’s check. My white cells did not dip at all, so I got to escape any bone marrow stimulators like Neupogen and all the fun bone pain they bring. The lymph nodes that I’ve been able to palpate on my collarbone for months have reduced and my pain is better. The numbness in my breast now waxes and wanes with very strange feelings of cold, ache, to shooting pains, I suppose this means it’s waking up? I’m told this is likely nerve damage that will take a long time to heal. To my doctors and me this means that at least symptomatically, the chemo is doing what it is supposed to do. That assumption makes it easier to take.

I’ve been weaning off the pain patch, the nerve pain medication, and the steroids. Every day and every drop down I feel a little bit clearer, but the drops are tough as my brain and emotions try to catch up. It all makes me real tired. Pretty much I’m either in a real good mood or a real snippy mood. I look forward to flushing this all out of my system and stabilizing a bit.

Sidebar: These beautiful, artistic, hearty mugs inscribed with painted feathers arrived at our door. However, there was nothing to identify their sender! We so appreciate them – and of course the feather symbolism, which makes me know they are from a blog reader (mad detective skills). Let me know who you are so we can thank you! 







Friday, April 19, 2013

Visible Ink: Reading of Patient Works 2013


What a gratifying treat to be able to travel to Manhattan not for medical treatment or pow-wows, but instead to see a piece of my writing staged by Broadway actors. For real? For the second year, the judging panel of the Visible Ink Writing Program hosted at Sloan-Kettering chose my submitted piece – “The Guru in the Elevator” – to be one showcased along with 17 others in a night of beautiful performance.

I was thrilled last year and again thrilled this year, especially to be part of the program’s fifth anniversary reading of works. The evening brings together prose, poetry, playwriting, music, dance … followed by a reception of cheeky hors d’oeuvres and sweet delicacies – pretty much all of my favorite things colliding.

My beautiful entourage.
My entourage included Craig, my parents and sister. We had roped-off VIP seating right behind the program’s venerable founder and my extremely kind and wonderful mentor, author Judith Kelman – recently named NYer of the week by NY1. Each of the front rows was marked off for those authors whose work would be showcased that night. It was an honor to be among them.

Working with Judith who pushes me to be a bolder, tighter writer and helps me to brainstorm and focus has been instrumental for me. The program does exactly what it intends to do: empowers and heals. Fox5 NY covered the event and put together a great package showcasing the performance and the program itself. 

All 700 writers that currently participate in the program have been a patient at Sloan-Kettering at one point or another, but not all stories performed that night focused on cancer. There were funny stories and poignant stories, heart-wrenching videos and interpretative weavings of letters of love. It was a wonderful mix, each piece performed wholeheartedly by actors with Broadway credentials kind enough to call these annual readings of patients works to be one of their favorite gigs.

With my mentor, Judith Kelman. 
As evidence, the adorable, animated actress who played the Turkish woman in the kitchen in my piece last year, played me this year and she couldn’t have done better at the part: one that didn’t showcase me in the best light (it’s okay, I crafted it), but was as truthful as can be. It was an honor to have her portray me. Craig’s alter-ego was spot on as well – perfect at the deadpan, unwavering stubbornness that drove me wild on that day that I wrote about.

What made me the happiest were two things: 

To have my family there with me to celebrate a joyous occasion – not huddled around me in mask and gloves waiting to throw the puke bucket toward me.

To have been a part in making people laugh. The actors and the photomontage the director created in the background brought my words to life displaying the right emotions in the right spots. It’s a pretty surreal thing when the words you write get translated into motion. To be honest, I couldn’t even take it all in. I just watched wide-eyed and gape mouthed, fueled by the chuckles from the packed house and filled with humility and pride thinking about how that real, truly shitty day the story was based on could possibly have turned into such a positive, proud, and humbling moment. 

The performance was professionally videotaped, and I'll post a link as soon as it is edited and published. Below are some photos from the performance and the text of "The Guru in the Elevator," which was also published in the fifth anniversary Visible Ink Anthology. You may remember it is a chopped and reworked version of a blog from last summer. 

From the evening's program: 

"The pages are still blank, but there is a miraculous feeling of the words being there, written in invisible ink and clamoring to become visible." 
- Vladimir Nabokov 

With my stage version: Actress Karen Wexler

Craig with the actor who played him, Joe Ricci



That's "us" with our elevator guru. 
                
The Guru in the Elevator
By Karin Diamond

A year ago, I was recovering from an allogeneic stem cell transplant: uncomfortable, irritable, nauseated and in pain.  In other words, a bitch.
This morning, I was particularly tired and weak, not eager to make the trek to the Upper East Side for my daily clinic appointment.
Every couple has sticking points, and that summer, ours was cab-hailing. I begged every night to call ahead to schedule door-to-door service. A certain man was confident that getting a cab would be a breeze.
We awoke and dressed. The tension was seething between us as I ate my toasted waffle with a side of six pills and a spoonful of chalky anti-fungal rinse.
I covered my face and nose with my paper mask, snapped my fingers into my plastic gloves – the picture of fashion. Shuffling on my stick-thin legs, I made my way through the streets with my husband, Craig, eyes peeled for an available cab.
Finding a morning taxi at the hub where the Long Island Railroad, New Jersey Transit, and a slew of subway stops dump means fierce competition. Getting a taxi to stop for someone who looks like she’s carrying a communicable disease makes beating the challenge near impossible.
I was losing patience and my energy was fading. Craig stood on the corner – arm out – as cab after cab whizzed by or other people cut in front of us.
 “We should have called ahead, ” I said. “We’re never going to get a fucking cab here.”
Craig stood, unwavering, as I nagged. He wouldn’t even acknowledge me. My angst and frustration were rising to dangerous levels.
Fifteen minutes passed.  No cab. 
“We should start walking,” I yelled through my mask.
“Be patient,” Craig said.  “We have plenty of time.”
            “Things wouldn’t be this difficult if somebody wasn’t so stubborn!”
I felt a bout of rage coming on.  I was hot, then cold, then nauseous and woozy. I was still getting transfusions, my body wrecked by chemo. I hadn’t taken a normal shit in days.
“I’m going to the Penn Station cab line,” I told Craig.  The Station was a long avenue away, but there were guaranteed cabs there. With that came a guaranteed line of people waiting for those cabs, but I was in no mood to be reasonable.
“That’s ridiculous, Karin.  Just wait.”
My mind was made up.  “I don’t know what you’re doing, but I’m going to get a cab.” I started on my way, thinking this was a good way to get him back, because obviously, the whole New York City cab inefficiency problem was Craig’s fault.
I weaved at a fast clip through the throngs of people pouring out of Penn Station. I had only recently found my legs, but that morning I got my sprint back; spurred by determination to prove a point.
My sunglasses were steaming from the air coming up through my mask.  My hands started to sweat and itch.  I pushed on toward the crowded cab line.  Then my cell phone rang.
What!” I snapped at Craig.
“Where are you?” he said. “I have a cab. You need to get here.”
I could hear the cab driver in the background yelling at Craig.
“Are you coming?” he urged.
            I did what seemed reasonable at the time:  I hung up.
Shuffling up the street, I dodged men selling framed Justin Bieber prints, bootleg movies and peace pipes.
Soon, I started seeing stars and thought I might pass out. My cell phone rang again.
“What?” I said, knowing very well what.
“Where the hell are you? I can’t hold this cab for long,” Craig said.
“I’m coming!” This time I kept our connection open so that he could hear my labored breathing as I lumbered up the block.
The cab driver was screaming: “Get out of my car!  Get out!”
“Please.  She’ll be right here.  Look.  Here she is!”
I collapsed in the back seat and the cab driver sped off, still yelling. 
Neither Craig nor I spoke a word, but a lot was said. I didn’t feel well but admit that I amped up my breathing and moaning for dramatic effect.  Craig’s eyebrows furrowed, his back was rigid as a plank.
The cab driver let us out at the hospital entrance and peeled away in a cloud of city smog.
Craig walked 10 feet ahead of me, as if our anger would implode us if we got too close.  I labored behind, so he had to hold the elevator door.
A man stepped in the elevator car with us for the ride. He was in his mid-fifties, easy, breezy and relaxed. I wanted to hiss at him.
He regarded me in my mask and gloves “I used to be like you,” he said.  “I was a transplant patient fifteen years ago.”
La dee fucking dah, I thought, sneering through my facemask.
Turning to Craig, he said, “You want to smack her yet?”
What? Who is this guy? I was shocked at his remark.
The elevator door opened. The three of us stood in the vestibule.
“A year from now she needs to take you on a vacation for having to put up with all her crap,” the stranger said to Craig.
I stood there like a doofus, knowing that this man remembered the many days on his own drug-fueled, post-transplant, emotional crazy train and could tell I was conducting my own engine that day.
“Do you know what happened today?” Craig asked, breaking into a smile.
“Yes. I do,” the man replied and walked away down the corridor.
That broke the spell. We both let our guards down and looked each other in the eye.  We almost smiled.
One year later, we did take that vacation, one rich in the natural beauty of Acadia National Park – a far cry from the previous summer’s concrete jungle confines. We left our attitudes and stubbornness behind.  No cabs to catch in Maine, only crates of lobster and fresh blueberries to contend with.