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. 

Monday, April 15, 2013

Working My Way Out

photo courtesy
Salvage treatment has started. I had my first infusion of Gemcitabine (Gemzar) chemotherapy this past Friday. It is not a drug that is new to me: I once received it as part of the regimen GND, one of the first regimens we tried to get me into remission after I relapsed from my autologous stem cell transplant in 2010. Now, we’re hoping it’s the lone ranger that will be my “get out of jail free card,” as Dr. O puts it. I don’t think it’s going to be a “free” ride by any means, but more of a “guaranteed” ride, as it’s well proven to work against HL. The side effects are supposedly small compared to other chemos, but chemo is chemo and it still makes me feel like shit. And for me, after being through so much of it, unfortunately, I’m more sensitive to those side effects.

This plan hatched after a long conversation at Columbia with Dr. O, my mom, and myself after he and his team had poured over my treatment history and attempted to find creative ways to get me out of this current situation.

A positive takeaway was that Dr. O said the amount of disease I have in my body is really unremarkable. He says that normally looking at my PET Scan and CT Scan results, doctors would give a shrug and give a “eh.” Unlike other patients, I am not contending with a 9cm mass pressing in my chest. For this I am grateful. What I am contending with is disease that – though scattered and therefore not causing any immediate danger ­– is in annoying places that causes it to be symptomatic. Annoying places like my bones and along my vertebrae, which leave me with pain syndromes. Because of this, we must treat a little harder so as to not allow those places to get worse.

We are dose escalating this drug, not using the normal protocol, but a special “Karin protocol” because we know how compromised my bone marrow is from all the treatment I’ve received – most especially my two stem cell transplants. With each treatment it gets harder for my body to muster the strength to create new cells after the chemo wipes them out. My body is tired. Therefore, we’ll watch my blood counts closely, as Gemzar can especially take a hit on my platelets. If things look good, we may add in another drug to the mix. I’ll be riding out this plan for a few months and we’ll depend on my symptoms to reveal improvement and will put off imaging until necessary. Another thing to remember: all of these PET and CT Scans expose me to more radiation, which means more cancer risk.

We had a lot of laughs with the doc and his amazing nurses. Dr. O and I hugged it out solidly. I know he wants the best for me and that I’m in good hands. I love the connections that I have with the team through e-mail and how I never feel like I’m floating out on my own. Though we have these really serious conversations, we can follow them up talking about our favorite candies and how my hot flashes were causing me to strip on the train and how the Decadron he gave me would have me pushing the damn train back home. It feels good to feel like you’re in a human environment.

Fortunately, I am able to receive the chemo locally at Hartford Hospital so as to avoid weekly trips to the city. I feel even more at home here, having been treated at the Helen & Harry Gray Cancer Center on and off for almost four years now. Secretaries, lab techs, nurses and doctors aren’t just my medical team, but truly friends. Not much changes there which is comforting, but also sickening as it brings back a lot of tough memories. I do my best to focus on the sweet moments and not break down at the saddened faces of those around me in the other chemo La-Z-Boys. This chemo drips over only a half-hour, making it about a 90-minute trip with pre- and post-meds, port insertion and removal and rigamarol. Not too bad. Then it’s just a 20-minute vs. 3-hour ride home to my couch where I can sleep it off. So far Dr. D and Dr. O are working together seamlessly and I’ll take the trek into the city once a month to check in and get checked out.

Though the infusion process was just another infusion process, it’s been a chemoey few days. I wanted to see no one over the weekend, and I was in quite an emotional downturn. The fatigue was – and still is – pretty tremendous. If I put my head down, I am asleep. My body also has that familiar swollen feeling both from the chemo drugs and the extra super Decadron steroids I get with the infusion. We are again trying to get me off of steroids of any kind since we can now rely on the chemo to hopefully be holding back the cancer. My eyes are bulged and my muscles and lungs even feel very tight. I went on a walk around my neighborhood yesterday and it was very hard: hard to breathe and even hard on my muscles.
Gotta have goals. I will be strong again.  photo courtesy

I’m realizing that I am very out of shape as I’ve had to “lay low” so much after the pneumonia debacle, long hospitalization, pain syndromes then biopsy procedure. Finally this week, I get the go-ahead to start using my arm again and my plan is to ramp things up again – gently, but consistently. I have this incredible urge to get strong again. I hate the feelings of weakness and lethargy and I don’t want to bow down to the chemo. Today was a much easier walk with Craig and Sam and this week I’m going to take my first dive into water aerobics – gentle, supportive, non-impact and a certain way to make some senior citizen friends at the Y.

Soon – hopefully only a few months of this ­– and fingers crossed, we’ll be able to decide the next step as this is not a sustainable treatment. I already got all choked up in the doctor’s office anticipating what that next step will be. It will be a massive life decision, as if I have not made enough of those already.

If/when the Gemzar does what it is expected to do, I will ideally be left in a state that is real close to remission. Now, what to do with that remission will be the big question. I’ll immediately jump to a clinical trial with the hopes of it holding that remission in place as much as possible. Then I have to decide: stick with the clinical trial route and hope that science keeps moving fast enough that I can jump from one to the next for the rest of my life – keeping things in a potential state of constant flux. Or, strike while the iron is hot and take advantage of the only short remission I may ever get and attempt a second allogeneic stem cell transplant, this time with a matched, unrelated donor.

This second option scares the shit out of me, but it is an option, probably the only option besides some miracle or huge scientific advance that could guarantee me the highly coveted long-term, cancer-free remission (after a long recovery process and most certain bouts with risky graft vs. host disease along the way.)

No matter what, I do want to know if this option is even a viable option for me. I like to pour over options. Could my body handle it? Is it advisable? Is there even an unrelated donor out there on the Be the Match registry that is a close enough match to me?

Time is of the essence, as I learned with my first transplant. If I do reach remission from the Gemzar, I need to be able to jump immediately when that happens. Therefore, we need to start tapping resources now. I’m being connected with transplant doctors at City of Hope in Los Angeles and with Fred Hutchinson Cancer Center in Seattle: the two leading transplant centers in the nation with regard to second transplants/haplo transplants/mis-matched transplants – all the fancy stuff I’d be getting into. It’ll be good to find a team and a pseudo-plan now so we’re not scrambling. The Columbia transplant doctor will also begin searching the marrow registry for a match for me, and I’ll be in touch with my Sloan team as well.

Deep breath. As much as I want to say that is all months away and I don’t need to worry about it, I do need to lay a foundation and that takes time, fortitude, and along with that comes, confusion and anxiety. At the same time, I need to focus on getting myself through this immediate step, incorporating the weekly infusions into my life, getting my strength back and highly refocusing on my healthcare plan. I need to do whatever I can do to complement/combat what this chemo is doing in my body so that I’m ready for the next step.

And not just the treatment steps. I’m also gearing up for another beautiful summer of paddle boarding and kayaking, weekend beach travels, more writing opportunities and volunteering. More living my life out loud rather than on the couch. The end of winter was rough in many ways and I’m ready to break out. Right now I’m sick of recovering from this chemo and it’s only been three days. I need to get over that, take a gut check and be grateful I even have this option. I need to be gentle with myself and also kick my own ass. Easy f’in peasy, right?

Tuesday, April 9, 2013

Down a Few More Lymph Nodes

Though I’ve had many minor surgeries, I was most nervous about this one. It was only another lymph node biopsy, but I would be getting full sedation (the propofol- plus treatment) and my lungs were compromised from the recent pneumonia, the lymph nodes swelling in my chest, and the fluid that had been floating around them, plus I had a fever and subsequently, all that does to a body. I was afraid that the anesthesiologist would take me too low and I wouldn’t be able to come out of it, or that once they pulled the breathing tube, my own body’s mechanisms would be useless. 

I’m here, six days later, writing this, so obviously my fears did not come to fruition. However, it didn’t stop me from asking the anesthesiologist and anesthesiologist’s assistant and nurse anesthetist if they would be by my side the whole time.

“You’re not going to leave me, right? You’ll be there for the whole thing to make sure nothing happens?” They assured me that they at least one of them would be.

My mom took me in for the procedure. As is always the reality, unless you are the first case of the day (which I wasn’t), your surgery won’t be on time. So, we spent a lot of time waiting in different holding pens with all different types of people in the pens around us.

One young guy was particularly entertaining. I just thought he was funny, but my mom made the determination that he was wildly nervous – I realized she was right. He was showing off and talking it up to every nurse, secretary, other patient, in ear or eyesight. We heard all about how he pulled the hernia he was in to get corrected by lifting too many heavy kegs as a bar back.

He literally talked nonstop and had this manic laugh that you could tell was trying to masquerade his intense worry. He was a 30-year-old man reverting to 12-year-old boyish flirting ways. It was cute and real sad all at once. But we met back up again in recovery when he heard me talking about Cool Ranch Doritos in my drugged up state and yelled through the curtain: “Cool Ranch Doritos sound fucking awesome!” back to me in his drugged state. We both made it out okay.

While waiting in the pre-op pens, I was not feeling well, and not just because of the surgery anticipation. I was chilled and had a fever hovering in the 101/102 range and my pinpointed back pain was flaring badly. It was not easy to find a comfortable position. My mom tried to keep me entertained, and I dosed in and out of sleep. Hunger was raging as I had to fast from midnight the night before; it was approaching a 13-hour fast by the time I went in.

The operating room was bright and cold – everything gleaming stainless steel except for the very thin table where I would be transferred to that was covered in a very thin blanket. As the nurses and assistants helped pull me from the stretcher to the table, they assured me they’d be careful positioning me so as to not further hurt me back. They were gentle and kind and friendly, especially the surgical nurse, whose sole job, it seemed, was making sure I was comfortable until I went to la-la land. She kept stroking my arm and asking questions about my life. We hit on dogs and she knew that was the topic she could relax me with as I started yakking on about how much I love Sammy. She asked me why we named her that. I told her that she was a rescue who came with the full name of Samantha, but that her most recent family thought of her as more of a Sammy and that we fully agreed. “Samantha” is far-too refined a name for our dog who adores maniacally digging holes in beach sand, diving under water, and running with big sticks/branches.

The surgeon came over to my ear. I was all taped up and tubed up at this point and sucking pure oxygen from a facemask.

Karin!” he cooed in his funny, sing-songy voice. “Karin! What are we dooooooiiiiiiiinnnnng?” They took my mask off so that I could say: “Taking some lymph nodes from my right side.”

“Yes! Yes!” he said, and also wrote the word “yes” in black marker alongside my armpit.

The facemask was replaced and the nurse told me to keep thinking about Sammy.

I heard the anesthesiologist direct me to take a few deep breaths and that soon I would be on my favorite island. I was skeptical, but sucked in as deeply as I could, desperately afraid that I would be awake when they sliced me open.

I remember the deep breaths and thinking about Sammy and then suddenly a very, very blurry ride to the recovery room. I remember asking whoever was pushing me if they got some good samples.  

“Yes, they did,” they told me. Likely, it was just a transporter who had no idea what I’d even had done, but it gave me the comfort to fall back asleep.

I don’t know this, but I felt like I was in recovery for only a few minutes before my mom was brought in and I could have saltines, though I wanted Doritos as much as my buddy on the other side of the curtain did. My mom relayed my grocery list requests to Craig who, though he thought it was a joke because it was so random, went ahead and picked them up for me: Cool Ranch Doritos (obviously), grapes, all-fruit popsicles, mud pie ice cream, “healthy” mayonnaise, a roaster chicken, frozen waffles, and a Cosmo magazine. It wasn’t a joke and it was all delicious over the course of the first few days home, just as I predicted.

As I sobered up, the pain settled in. It felt like someone opened up my armpit and ripped out a few swollen lymph nodes of tissue – because they had. But really, after just the first couple of days, I’ve had no pain there. Other pain, yes. Post-surgical pain, no. Just a little weak.

I’ve been very social these past few days since, with book club and dinner get-to-gethers and basketball watching with friends and a total girls fun/recovery day with my best friend since childhood, and tax filing and dining room remodeling planning with Craig. It’s been the life of a “regular” 30-year-old and I’ve been enjoying it. It’s just that in the middle of it all I’ve been battling shortness of breath, continued pain, immense fatigue, and coughing fits. But it’s not stopping me.

I already have the results back from the biopsy. Drum roll, please …. “Classical Hodgkin Lymphoma.” Wow. Original. It’s the same damn thing I’ve been dealing with since 2009. Even so, I have no regrets on getting it done, however, as now we can move forward in confidence. There will be many additional stains happening to the tumors and pathologists will be analyzing it for certain proteins that will help determine the best treatments. No matter what, we’ll get beneficial information from having a very recent sample to base treatment moves off of.

At first I was quite down on the news, as I wanted to find out that it was something else entirely that we’d be able to wipe out and I’d be done with it all. Then Craig reminded me that I probably would still have HL on top of that, and it’s doubtful that anyone would say it’s better to have two diseases than one. That logic was hard to argue with. This is not bad news – again – it’s just news.

What we’re calling “salvage” treatment, which is basically a nice way of saying really harsh treatment to melt the disease, starts this week, like maybe tomorrow. I don’t know what it will be yet or where or when I will start it. Waiting on word … . 

Tuesday, April 2, 2013

A Treatment Plan Outline

We’ve done a little shimmying and a little shaking with the schedule of events but I’ve long ago released expectations of set timelines.

That's the mirror reflection of me on a PET Scan. The 
surgeon is going after that area of black in my right armpit. 
I feel so exposed! Heeeeyyyy, sexy la-day!
I thought I was going to have a lymph node biopsied from my neck this past Thursday, but now it’s coming out of my right armpit – tomorrow. I did see the oncology surgeon that day  – an adorable, friendly little man who has performed two of my previous lymph node biopsies, but he wants to go after some different nodes. After examining my latest CT and PET Scans from Columbia, he’s highly attracted by a cluster of nodes under my right armpit. He says they are especially FDG Avid (hot, hot, hot), are large and are easy to grab. He wants to get some really good tissue samples. He’s concerned with cutting into my neck since I do have such a big cluster of nodes there, but many are small and may not render good samples, and entering there could lead to nerve damage – which I’m already struggling with. He also doesn’t want to give me a neck scar. I understand. Let’s get the best specimen we can. *Note on PET Scan photo. A PET Scan shows all metabolic activity, so don't be alarmed at how much of my body shows up as dark spots, for example the brain, the heart, the liver, kidneys, bladder, etc. are all dark because they are functioning normally. The big blobs in my left neck and collarbone, mediastinum, underarms, throughout abdomen, and the smatterings on my hip bones and upper thighs, well, that's what we're trying to get rid of. Sorry if this is disturbing, but thought it might be interesting for people to see what we analyze. 

[Desperation visit]:
I was in so much pain last Wednesday, I hit delirium. I didn’t want to wait for a phone call back from my Columbia team. I wanted to see a doctor in person and knew that a trek into the city wouldn’t be happening. I went in for one of my always productive and calming visits to Dr. Dailey’s office. After discussing my pain syndrome for a while, he prescribed me Neurontin, a nerve medication, and ordered me an MRI of my thoracic spine to see if there was anything pressing on nerves. These were both things that had also been discussed by my Columbia team, so I knew they’d be on board. When they heard the plan, they were in agreement.

The Neurontin has been helping, especially to stop the pain at night. My Columbia team had me bump up to 20mg steroids in hopes of a boost to be able to enjoy the holiday weekend. Even so, Saturday was shit. I was in incredible pain, spiking fevers short of breath and very weak. By all intents and purposes, I probably should have gone to the ER, but didn’t want to land in the hospital when I knew I was going to Columbia on Monday to see the people that I needed to see and get this all squared away. Instead, Craig and I bowed out of the family Passover gathering, and he took care of me all day, at one point able to get me outside onto the deck furniture he brought out to read and fall asleep in the sun. With time and good TLC, things got better.

My brother and sister-in-law and the kids slept over so that meant that the Easter Bunny came to visit our house for the first time! We helped them create an Easter egg hunt and hide their baskets. In the morning, our nephew, Jake, 3, came running into our room at 6 a.m. (to our delight, really, it was so cute!) to tell us that the Easter Bunny came. He and his sister, Anna, who is almost 2, were so thrilled to find colored eggs on shelves, in plants and under tables. I don't think about pain when they're around because they're too cute to be anywhere in its realm. 

I enjoyed breakfast with everyone, took my meds and went back to bed for a bit before heading to Craig’s grandmother’s for an Easter visit and then Easter late-lunch with my family. We spent the afternoon at my parents with my sister and uncles and aunt and their puppy, Brodie. There, I could be comfortable wrapped up in a blanket when chills set in and leaning on a heating pad when pain set in and all was fine. It was comforting to be there enjoying tradition and normalcy, besides the coughing spasms every time I laughed, which was a lot.

Suddenly it was crash and burn time and we headed back home. I had a solid gagging, coughing fit in the car that caused me to puke into my hands, onto my trench coat, into my purse, and the Jeep rug mat. One bite of decadent Pastiera too many, I guess.

[Come to Jesus visit]:

Monday Craig took the day to drive me into the city, as I knew my body couldn’t handle the train and he wanted to be there to go over the important information we’d be talking about.

We went over the results of the MRI with Dr. O. The test looks closely at bone and soft tissue, showing things that don’t necessarily pop up on CT or PET Scans. Not surprisingly, I have “extensive osseous metastatic disease,” meaning there are lots of soft tissue nodules (cancerous areas) infiltrating my spine, mostly on the left side, hence all of my pain and numbness, as they are doing all kinds of things to the nerve branches coming out of the vertebrae. Good news is that there are no compression fractures or abnormalities in the cord itself.

Dr. O spent an extensive amount of time with us explaining my scenario, going over options and talking way into the future, noting that if we only plan for the immediate step, we’re only going to be left spinning our wheels. I concur. He infused me with a lot of hope when I was expecting a very dire report. Here’s the current “plan:”

1.     Get Karin feeling better and out of pain, as this is a quality-of-life issue. We will work to shrink down the disease in my bones and stop the pain. We’ll do this with a “short pulse” of induction therapy with traditional chemo drugs. We’ll do this just long enough until I can get a fairly clean scan. Radiation may be involved in this as well. The actual treatment will be decided once we get the biopsy results next week and know for certain what kind of lymphoma we’re working with.
2.     Move onto a clinical trial (many options) that will maintain the near-remission and keep me stable for hopefully a long time.
3.     While 1 and 2 are happening, explore future, future options. We’ll start searching the Be The Match Registry to see if there are any unrelated, matched donors out there that I might be able to get a second transplant from. We’ll also look into some promising vaccine therapies taking place in Texas.

Tomorrow I go under the knife. The surgeon says he’ll give me the Michael Jackson Propofol special, so I shouldn’t feel a thing. I was reading my blog post from my last lymph node biopsy in 2010. Apparently, the day after, I went for a 40-minute walk, baked kale chips and zucchini bread. I don’t foresee that happening this time. I’ve already recruited my bestie to come over and take care of and watch movies with me – maybe we can do a 10-minute walk around the neighborhood.