Friday, June 21, 2013

2013 Visible Ink Staged Reading Video

The Visible Ink program at Sloan-Kettering has posted the video from its 2013 staged reading. Here is a link to my piece, "The Guru in the Elevator," being performed by two Broadway actors who I was thrilled hit the sentiment on the head.

Please take the time to watch the others as well. Each showcased piece offers a very unique perspective. If you watch just one other, Mark Jason Williams's play "Recovery - Scene 2 - Bob and Amy" is incredibly moving. 


Wednesday, June 19, 2013

In Search of a Raft

Ducking out in the rain with Craig for some 
Thai food to celebrate his birthday between
a very hard-to-swallow doc appointment and
an always-enjoyably claustrophobic MRI. 

June doesn’t seem to be my month this year. Really 2013 in general hasn’t been treating me that well in terms of the whole cancer thang. Everything else in life has been wonderful, but the lymphoma has really been rearing its head far too much. Too many hospitalizations. Too many transfusions. Too many side effects. Too much pain. Too many appointments. Things have not been stable for over six months now, and the up and down is tough. I know I can’t stop the waves and I’m doing my best to ride them instead, but it is getting exhausting. I wish someone would throw me a freakin’ raft I could float on for a while.

Yes, it is confirmed that all of the pain and the fatigue I was having were indicative of cancer growth. I had a PET/CT Scan done of my full body and an MRI to take a close look at my pelvis and there is progression in old spots and new spots have developed. We have to give up on yet another treatment after just two cycles. Goodbye Gemzar. Hello VBM.

VBM is a combination of Vinblastine, Bleomycin, and Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve also had V as a single-agent therapy when trying to get into remission for my allo transplant. I have never had Methotrexate used as a chemotherapy agent. This is a pretty rough, intense regimen but one that is proven to work. Apparently it is very old school, something that was used before ABVD came to the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about, though it had very good results.

My scans look pretty horrendous and my pain has been equally so. To get me out of this, we started up already with the new treatment. I had my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a long day in the city for my mom and me. I vow to never again take the train home after receiving treatment. It was pretty unpleasant. The train was extra cold with A/C blasting and extra jostling. I was nauseous, then had a huge onset of pain and then an uncontrollable bout of chills. I wanted to get off the train so bad and cursed the entire 98-minutes. I tried to sleep or read but nothing worked. The last 20 minutes were sheer torture. Then it was still an hour-and-15-minute drive home, though it was much more comfortable to be in my mom’s car on the heated seat. I could barely muster the strength to get from the car to my living room couch.

The post-chemo feelings continue to today. I’m very lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled, but my stomach is very unhappy and my body pretty angry. If I let myself, I feel as if I could sleep for a week straight. But, I don’t. I’m determined to still be a functioning human being even while being back on very traditional chemo. The process is bringing back familiar feelings of my past and frankly, I hate it. This is not a long-term treatment, but again, trying something to get me out of the woods here. We have to stop this disease from growing and get rid of what’s there so that I can move onto a treatment that is more tolerable and will serve as maintenance to keep everything at bay. But right now it is just too dangerous to put me on anything that is an experimental therapy.

In the meantime, I’ve started the conversation with a transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities of a future second allo transplant so that if the time comes that I do get a remission from this regimen, I know what all of my options are for what to do with that remission. That whole thing is nauseating in itself to think about.

Last week/weekend I attended a writers’ conference at Wesleyan University where I was saturated with teachings about the craft and the business. It was a wonderful distraction and a good dose of much-needed inspiration. It was exhausting commuting back and forth for long days feeling like I was, but it was worth it. I need to have life balance of some sort even if that means pushing it when I barely can.

Also of note: Sunday we celebrated my dad in honor of Father’s Day and also marked my second transplantaversary. June 16, 2011, was the day that I received my sister’s stem cells and began the growth of my new immune system – my “rebirth,” so they say.  It also would have been my friend Steve’s 38th birthday had HL not finally taken him far too soon. I cried a lot, for him, for his wife, for me and my family and thinking about what we’ve been through. I cried also because I’m so happy to still be here two years after such a traumatic experience. I cried because I’m still not cancer free and that I know there is a lot more to endure. The memories of it all are still very raw: both the ones that make me shudder and the ones that make me smile in triumph.

No, where I am at right now is certainly not ideal. I need a lot of help. But, I am here and that is what matters. I am doing my best to make the most of it and to not allow myself to fall into the pits of discouragement.

Sick or not, I still have to get groceries, cook meals, do laundry, pay bills, keep up our house, research treatments, keep on top of my medicine and appointment schedules. Sick or not, I still want to love on my husband, play with my dog, hang out with friends, spend time with my family, go out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get back into yoga again. Thank goodness for those things or I don’t know where I’d be.

No matter how shitty I feel, the summer weather is still beautiful, the flowers striking, my love for those in my life stronger every day. This is what I tell myself to calm myself down when the fears get to be too much. I know we are teetering on the edge of no options. I’m not sure what the plan is if the disease doesn’t respond to this traditional regimen either. In truth, I am getting scared. I can’t do much else but cling desperately to hope.

In just a couple of weeks – June 29 – I’ll get to celebrate my 31st birthday. 31. I couldn’t be more thrilled to keep reaching these milestones, though I do wish I could be running, not crawling, to them.  

Tuesday, June 11, 2013

A Complicated Relationship

Hope you enjoy reading my latest piece for The Huffington Post's Generation Why Series: "A Complicated Relationship." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.

If it sounds familiar it's because it's born from a blog entry I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.

As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.

Tuesday, June 4, 2013

Pushing Through Like I Said I Would

A throwback photo.

Sometimes I am embarrassed by how I reacted to my initial diagnosis, shocked at how immature and naive I was – invincible! cancer! fighter! At other times, I’m so jealous of who that 26-year-old was. I feel that about other aspects of my life, too, not just dealing with my disease. As time passes and as I age, more difficult things happen, which can leave me guarded, jaded and tired at times.

I feel like things used to be so much simpler, though they probably weren’t, they were just different. But what I can guarantee is that I did not know as much and now that helps or hurts me depending on the situation.

I’ve never been one to say: “ignorance is bliss.” I’m curious, an information gatherer and problem solver almost to a fault. I want to figure everything out and know about not just everything that is happening in my world, but in the greater world around me. I think that’s why I love books and good news coverage and documentaries so much, because these are things that are really happening even if we as people pretend they aren’t.

But right now, in this moment, I know too much. I know that the tremendous pain I’ve been in over the past four days means lymphoma is growing. It is very intense and very concentrated right in my hips and pelvis and sacrum, exactly where it always flares up. It’s at times like this when maybe ignorance would be bliss, and I could just pretend that it’s a fluke – too much squatting when planting our little herb garden.

My doctors and I don’t even need to directly speak it: they know I know and I know they know what’s going on. No one has said: “It’s cancer in your bones that is causing you this pain” just like no one says the ground is wet because it is raining. Why state the obvious, especially when we’re all getting a little tired of acknowledging it?

I’ve been prescribed a new cocktail of pain meds that got me out of the blinding, seething pain that was Sunday and Monday and into the uncomfortable, woozy, nauseating – though pain-free – high that has been last night and today. Tomorrow we will stick with the plan of a higher dose of Gemzar and the addition of the chemotherapy drug, Navelbine. We’ve got to stop the growth as the pain is intolerable.

When I was first diagnosed, I went at this so simplistically. It was a challenge that I would conquer. I knew it wouldn’t be easy, but I never thought it would be impossible. Now, I’m looking back at 26-year-old Karin for some of that old positivity and confidence.

In my post from May 8, 2009, entitled “Diagnosis,” I wrote:
"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."

That last statement was at the time so simple and is now so profound to me. I had absolutely no idea what I was in for. My wildest imagination couldn’t have fathomed what “tough times” would mean. But whatever was to come at me, I knew that I just had to push through it, like how we all have to put our pants on one leg at a time. Simple as that.

I guess none of us ever know what we’re in for and because of that, there’s not much we can do but promise ourselves that we’ll work through the tough times because those are part of this good life, too.