Tuesday, November 27, 2012

Trapping Fears

Home Alone booby trap success.

(c) forallthosesleeping.buzznet.com

When I was a junior at the University of New Hampshire, there was a campus creepster on the loose. Not only did he peep like a Tom, he sought out girls leaving parties, followed them home then once they went to bed, broke into their apartments, scissors in hand.

His signature move was snipping the straps of women’s tops or cutting their clothes off altogether so that they’d awaken naked, confused and terrified of what happened to them in the night. The media quickly dubbed him “Jack the Snipper” grabbing headlines in the sleepy New Hampshire town with this juicy story – something destined for Dateline. Meanwhile, the more his name popped up, the more it terrified us.

In the span of a month, seven women reported having their downtown Durham apartments broken into. Some recalled waking up to a strange man standing over them, others reported waking up surrounded by their own tattered clothes. The 27-year-old non-student was spotted staring into windows and lurking in shadows.

Saturday, November 24, 2012

T Cells On the Offense

Among the many things I am grateful for this Thanksgiving weekend is something I no longer have: my rash. I was able to enjoy the three Thanksgiving celebrations with three familial sets and cheer on Craig in a turkey day road race sans the itchy red spots that had been haunting me.

As of Wednesday, the red brail faded into a vague purpleness, no longer raised and angry. With this good report, I got the go-ahead to start back on the Revlimid treatment pills back at the original 10mg. This is half the dosage I was on when the rash set in.

I was eager to get back on the treatment, worried that I would lose any momentum I had gained against the disease. However, getting back on hasn’t been easy. It seems my body easily forgot the semblance of balance it had found once it got used to the drug. It’s again been a shock to the system.

Tumor flare seems to be again well, flaring. Ouch. My mid-back hurts tremendously. It hurts for a couple of days before I went back on the treatment pill and now that I’m taking it again, the pain has increased. I take the medication before bed so I don’t have to deal with its ramifications during the day. For these first few days back on the Revlimid wagon, this has meant waking up throughout the night with pretty tremendous pain in my hips and back, the areas where lymphoma lies/laid.

I’m not surprised, and I guess this is good. Pain means that the Revlimid is jacking up my immune system and flooding those diseased areas with natural killer cells. The process causes a lot of internal inflammation in my bones where there’s not a lot of room for extra cells. It feels at times as if my hipbones will just give out. I’ll check in with my Columbia team on Monday, but I’m pretty confident that they’ll say: yup, this is likely tumor flare; it’s the drug doing its job.

I ride it out with Aleve, breathing, microwaveable heating pad and stretching. The nighttime pain keeps sleep elusive and the first hours of the morning extra creaky. It’s manageable most of the time through the day, though I’m certainly hoping things calm down a little. In this case, pain is proof positive. With that in mind, I can endure it.

Getting to play with my niece and nephew and now frolicking in full-swing Christmas season and everything that brings is a beautiful distraction. Best painkillers out there. 

This is an incredible microscopic look at what we hope is happening in my body. The Revlimid is working to ramp up those receptors on the natural killer cells (the red dots) so that they will latch onto the cancer cells and eat them for dinner just like this video demonstrates: 

Tuesday, November 20, 2012

Words Frozen in Time

At the beginning. I love you and am proud of you, sweet girl. 
I’ve actually been taking tangible steps toward recreating this blog into a book for a wider audience.  A huge part of getting a manuscript and proposal ready to pitch to literary agents and publishers has been going back through it all, rereading, editing, organizing, trimming. That’s been a journey in and of itself and I realize why it’s taken me so long to find the strength to be able to do it. It’s eerie and it's tough to relive it all and to hear my own voice and perspective change as I read about everything I’ve been through. 

However, I’m confident that I’m finally in a place where I can handle it and see past my own insecurities to the greater good that sharing this story can bring. Someone told me in the very beginning that I should write a book but I thought that my cancer story wasn't unique enough; I had an "easy" cancer that'd be cured with simple therapy. Well, now I've certainly got a lot more fodder to work with. My story most definitely isn't mainstream.

It’s strange because I read it and just feel awful for this young woman. I know what’s going to happen, obviously, but even so am disappointed with every relapse and devastated at the side effects and choices that had to be made. I read it as if it’s not me, but someone else, a coping mechanism I’m familiar with relying on. The blog has helped me to remove myself from this whole situation and now creating it in another medium is like setting another layer of padding. I truly don’t recognize myself in some entries. In others, I remember myself in those moments far too intimately and it can be very painful to relive. It’s been a taxing and revealing creative process so far.

Thursday, November 15, 2012

Revlimid Rash Out

Baldwin Hills Scenic Overlook, Culver City
This week will be a one-blog-entry week due to a variety of reasons, not the least of which are jet lag and a raging red rash.

Steve’s memorial was beautiful, respectful, and inspiring. The positive, loving energy among the nearly 300 people that filled the LA studio where it took place was palpable. So many good people that he had attracted in his life and it’s no surprise that they were all there to pay tribute to such an incredible person that had impacted their lives as he has mine. The day was full of laughter, shared stories, touching moments and positivity among Steve’s favorite breakfast foods and drinks.

It was an honor to get to meet his family and to be able to tell them how much their son meant to me. In and of itself, it was worth the cross-country flight to be able to hug his wife, Jen, in person and to hear her speak so eloquently about the loss of her soul mate.

Sunset in Santa Monica
Though I wish he was still here, I left having learned more about his life and the way that he lived it giving me such a dose of positive inspiration and an acceptance of the natural rhythms of life and death that I needed at this time. The lessons that he taught through his witty and thoughtful ways did not die with him; they will always live on inside all of us who were fortunate enough to have had him in our lives.

Friday, November 9, 2012

Saying Goodbye

Tomorrow we fly to Los Angeles, California, to say goodbye to my friend, Steve. Comprehending and accepting his death has been extremely difficult for me. I feel that being there with others who loved him celebrating his life will be the best way to find some peace and allow myself to better let go of the anger and the pain knowing that I was able to honor him and thank him for the friendship he gave me.

Craig is coming with me in strong support, and we both want to be there for Steve’s wife, Jen, who has always been there for us from across the miles in the most difficult of times. This time is undoubtedly beyond painful for her. I am eager to learn more about Steve’s life pre-cancer and to meet the friends and family that also loved him.

Part of his day of honor will include his favorite drinks and watching the Eagle’s football game, so I'm expecting laughs and good memories amid the sad parts. They’re calling it a celebration of his life; I look forward to being able to do just that. My life was changed for the better because of him, and I want to honor his life and the path we walked together living with this disease.

I know it will be hard; I can’t help but project my own fate, but I know that it will also be cleansing and inspiring. I just have to be there. I am following my heart on this one. 

Wednesday, November 7, 2012

Hope Endures

image copyright washingtonpost.com

"I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting." - Barack Obama 

I was thrilled to tears to wake up in the early hours of the morning to hear that President Barack Obama had earned another term in office. I look forward to four more years under his steadfast leadership. His intelligence, diplomacy, compassion, and determination are inspiring to me. I love listening to him speak. I love his respect for the diversity of our country's people and our varied needs. I love that he looks at the big picture – to our nation's future – and pragmatically makes decisions that support and encourage success for everyone, building an environment that cultivates the understanding that we're all in this together. 
I am honored to have taken part in this historic election and to have been able to witness footage of the droves of others casting their votes as well, despite long lines, power outages, home destruction and makeshift poling places. It makes me proud to count myself among so many Americans passionate about our country and the issues that build its culture and its place in the world. 
I have hopes for continued forward momentum and now after a grueling election season, a government that is less partisan and divisive and rather one that can find common ground on the issues that the American people have spoken so clearly and passionately about during this election year. 

Friday, November 2, 2012

Visible Ink 2012 Staged Reading Video

After several months of editing, the 2012 Visible Ink Staged Reading was posted to Sloan-Kettering's website. Below is the performance of my piece, "Kitchen Charades." Please visit the program's website and check out the other fantastic pieces of writing staged that April evening – one of the most humbling of my life.  

Visible Ink is a one-on-one writing program for patients at Memorial Sloan-Kettering Cancer Center that offers opportunities for self-expression, stress reduction, personal growth, and individual success at a time when many participants face the considerable challenge of a serious illness.

I am forever grateful to the program's founder and my mentor, author Judith Kelman, and the opportunities for creative outlet and confidence building that this program has brought me. I was so honored and in awe to hear my words being performed by Broadway actors that night. Even watching the video and hearing the audience's reaction is still surreal to me. 

Judith and I continue to work together on my writing. I send her monthly stories that we hone and polish together. I'm wrapping up two pieces to submit for publishing and staging consideration for the 2013 anthology and performance. The program gives me focus, purpose and a place of inspiration and comfort. 

My piece ends at 4:30. As it was the last piece to be performed, the closing song is wrapped into my segment as well (also worth a listen).