More Magazine 2013 Beauty Search - On-line Article

The on-line version of the article and accompanying photo shoot pics can be viewed at:

2013 Beauty Search Winners

In the November edition on newsstands now, there's a "behind the scenes" photo montage from the photo shoot. I saw it while standing in line at BJ's on Sunday, while wearing faded yoga pants and no make-up. What a contrast!

This afternoon, I have my quarterly appointment with Dr. Goldberg at the John Theurer Cancer Center. It feels so great not to be starting another round of chemo this week!!!

Creative Writing Workshop Recap

The creative writing workshop, which I led at the John Theurer Cancer Center, went well. One of the "ground rules" for the group setting was that we keep the session confidential. This helps participants to feel safe and secure while sharing their work and emotions. So I won't be sharing my take on the session, but I was very pleased to find out that two of the participants gave the cancer center permission to post on its blog essays they wrote during the evening.

For the first experience, we taped print-outs of road signs on the walls and asked the group to free-write about their cancer journey as it relates to one or more of the signs. Two of the survivors' resulting work can be read at the links below:

Road Signs on My Journey Through Cancer

Signs

For the exercise, I chose to write about a falling rocks caution sign. My 10-minute free-write is below:

The mesh netting holds back the rock, jutting from the face of the cliffs, from falling onto the cars driving through the narrow passageway. In the dim light of the headlights, I can just make out the snow, capping the rock outcroppings of this mountain near Vail, Colorado. I'm afraid these boulders will fall, crushing our car. The sign warns it can happen, despite the metal latticework barriers. The mountainside will crumble, just as our car passes by it. Bad luck. That's all it will be. I should never have gotten leukemia. I should have given birth to a sweet girl named Lily Elizabeth on August 14, 2011. Her skin would have been soft, and pale. Thick dark hair, brushing my cheek as we snuggle. New baby smell. Instead, the chemical smell of the disinfectant soap in the bathroom of my solitary room at the hospital lingers in my nose. How can I trust that the rocks won't fall when they've already fallen once? If they hit our car, I will feel the crushing bone pain all over again, as bad as it had been after the Neupogen shots. Pain like my bones are breaking, like someone has shattered my knee caps. The probability of latent side effects from the treatments can't be that different from the chances of those rocks falling. But I cringe as we pass through the gap bored through the mountain, trying to make out the the mesh netting in the darkness. I'm so busy watching the rock walls that I'm not looking ahead, toward our family vacation. Nor am I listening to what my daughter is trying to tell me from her car seat in the back.

The last two lines of this free-write were a surprise revelation, and serve as a point I need to keep reminding myself of any time I get into one of my downward anxiety spirals. I went into the session viewing it as a way to help other survivors, and left the event surprised by how much I'd gotten out of it as well.

If you're going through a tough time in your life, trying searching on the web for road sign images, and spend ten minutes writing about one or more. You may also be surprised by the result.

Creative Writing Workshop @ the John Theurer Cancer Center, Tuesday October 22

If you're a young adult affected by cancer, we'd love to have you join us for this event:

TIPS FOR WORKSHOP PARTICIPANTS:

Videos from Stupid Cancer NNJ's Young Adult Cancer Workshop @ the John Theurer Cancer Center

Below is the link for the videos of the sessions at the workshop I attended a few weeks ago. It was a well-organized, informative event, at which I made some new friends I hope to see at future events. (And, despite being in a hospital, the food was amazing.)

Videos: Stupid Cancer NNJ's Young Adult Cancer Workshop | John Theurer Cancer Center

The sessions you can view at the link above include:

• Dr. Andre Goy on the exiciting new developments in modern oncology
• Brain cancer survivor, Stupid Cancer Founder, and CEO Matthew Zachary on the young cancer movement
• Young adult cancer psychotherapist Julie Larson on coping with the emotional/physical effects of cancer post-treatment
• Clinical Nutrition Coordinator Robin McConnell on how to eat healthy when "on the go" and on a budget
• Survivorship Panel moderated by Matthew Zachary (for which I served as one of the panelists)

 

StupidCancer Adult Cancer Workshop - March 16

The John Theurer Cancer Center is hosting a young adult cancer survivor workshop on Saturday, March 16th. If you're in the area, and part of the club, I hope to see you there!

For details and registration, visit Stupid Cancer Northern New Jersey Young Adult Cancer Workshop

I will be one of the panelists on the Survivorship Panel at 2:15pm, and the below is a short piece I wrote about my expectations for the day, which the cancer center has posted on its CancerPerspectives blog.

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Each of us is a cancer fighter; Together we are an army

StupidCancer Northern New Jersey Adult Cancer Workshop – Saturday, March 16 @ John Theurer Cancer Center (Register Now!)

Each of us is a cancer fighter. Together, we are an army. And, just as importantly, we’re a group of friends, who can laugh together and support each other. As young adult fighters / survivors, we face a doozy of a list of cancer complications, which span from mouth sores to reservations about dating to finding a way to pay the bills. It’s not been easy for any of us, but we can make it just a little bit better for each other. I hope you join those of us who’ve already registered for this event.

You may be wondering what to expect. Based on my experience at a StupidCancer conference last fall (for which all slots filled, so register early for this workshop), here’s one vision for how your day may go:

Life and Liberty: Celebrated in Style

This post will also appear on the John Theurer Cancer Center's blog.

This afternoon, the John Theurer Cancer Center threw a party to celebrate the “C” Word. Community, that is—not Cancer. Four thousand patients, supporters, and JTCC staff gathered at Liberty State Park for the Fourth Annual Celebrating Life and Liberty event. The lawn in front of the expansive, white tent provided stunning views of the Statue of Liberty and Ellis Island. The patriotic theme embodies the JTCC community; the composition of the gathering was as diverse as our country, and all of the partiers had one thing in common: the pursuit of happiness, and life. For the second year, my husband and I felt honored to belong to this home of the brave.

ATRA Art

Today is the first day of round four of eight. On our way to my last appointment with Dr. Goldberg at the John Theurer Cancer Center, we passed a display of patient artwork in the lobby. The reproductions were from cancer patients across the country, but JTCC does offer free art classes as a form of therapy. Some day, I'd like to try one. I am a believer in art therapy (Coping Through Creative Expression). Until I can fit one of the center's classes into my schedule, I've decided to do a little art therapy on my own. Below is the result of my effort this morning, before popping the first four pills, entitled ATRA Art. A mock interview follows, which was just as enjoyable to write.

Q & A with the Artist

Q: How did you prime your canvas?

A: The same way any other good leukemia patient would: with disinfectant.

Q: What inspired you to include the broken tea cup in this piece?

A: It was sitting on the dining room table next to me when I began working. The tea set is one of Katelyn's all-time favorite toys. She first became capable of imaginative play shortly after I returned from my induction hospital stay, so our first tea parties together are great memories for me. Last week, she dropped the tea cup on a tile in our kitchen. It will be glued back together. Just as these treatments have been gluing back together our happy family life.

Q: While you were working, were you worried you might sneeze and blow the design?

A: Yes. I wore a face mask from my days of no immune system.

Q: The pills all face the same direction in the deliberate lines. Was this intentional?

A: That would be one heck of a coincidence if it weren't. I wanted to create the impression of order in chaos. At one point, too late, I realized I'd placed a pill facing the wrong direction. Hopefully no one notices.

Q: Did any particular artists influence this masterpiece?

A: Vik Munz. I dig his work.

Q: Did any particular drugs influence this masterpiece?

A: Perhaps. Theoretically, it would fit my treatment timeline.

Q: Can we expect to see more greatness from you in the form of ATRA Art?

A: I can't commit at this point, but the fact that I have four more rounds to go should give you a sense.



Recap: Young Adult Cancer Survivor Movie Night

This entry will also be published on Cancer Perspectives, the John Theurer Cancer Center Blog

At the Young Adult Cancer Survivor Movie Night, the question was raised: “How has cancer affected your social life?” A moment of silence followed, in which each of us reflected on just how cancer has changed us. For many young adult survivors, walking into a bar bald-headed and fatigued feels no less awkward than walking into a bar naked. 

Cancer is a party crasher. Yet here we were, a group of young adult survivors, hanging out, having fun. We’d spent the evening eating pizza, chatting, watching a movie. Thanks to the John Theurer Cancer Center,  the Young Survival Coalition of Northern NJ, Stupidcancer.org, the Leukemia & Lymphoma Society, and Gilda’s Club Northern New Jersey, we had an opportunity to kick back and relax with others who were happy to be at an alcohol-free event, who didn’t mind when they turned the lights out at 9 p.m.   

Don’t get me wrong: many survivors refuse to be hindered by their diagnoses and are able to make crazy late nights happen.

Goldberg Appointment

Now that the pre-chemo apointment every three months is becoming routine, we refer to  it as the Goldberg Appointment. At last Friday's meeting with Dr. Goldberg, he told me to stop taking the Coumadin (i.e., Warfarin). It's standard practice to take a blood thinner for a year post blood clots, and it's now been a year. No more rat poison in my system, and no more blood draws every few weeks to measure my INR/PT. I did have my blood drawn for a PCR remission test for the APL. We should get the result by this Friday.

We also discussed the plan for pain management for this round of ATRA. We're trying a new tactic- a patch that will release a continual stream of medication into my blood stream.* Hopefully by bypassing the GI tract, it won't compound the nausea caused by the ATRA. The downside is it will make me constantly drowsy, which might actually put me in the right state of mind to finally watch the Twilight series... Given the quantity of blood products I've "consumed" over the past year, I guess I'm on Team Edward.

* Thank you, Nurse Mary Lou, for suggesting this!

The Living Wall

The Living Wall at the John Theurer Cancer Center

A common theme among cancer surivors is that they appreciate the little things in life more. Post cancer, a rose smells sweeter, a child's laugh more memorable, an expensive steak dinner more savory, etc. etc. etc.

So if I'm supposed to be more attuned to the small pleasures in life, how in the heck did I miss the plants covering a wall in the four-story atrium of the cancer center where I receive treatment? If those fronds were carnivorous plants, I would be dead. Just like a fly oblivous to a venus fly trap.