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.

Book Review: The Lifeboat

Charlotte Brogan's debut novel, The Lifeboat, is a story of man vs. wild, man vs. man, and man vs. himself. By man, I mean human. As chivalry in 1912 dictated, the majority of the passengers who secured seats in the lifeboats of the sinking ocean liner were women, including the main character, Grace Winter. She recounts the events that occurred while stranded at sea from a jail cell; she is on trial for her role in those events.

The novel centers on one lifeboat's passengers' quest for survival. As conditions deteriorate and the days pass without rescue, the passengers become more desperate. With no land, food, or fresh water in sight, leadership and loyalties are questioned, and a new conflict arises-- man vs. woman.

Cancerversaries

Cancerversary is a playful word with a deep meaning, and it represents a reason to celebrate. Now that I am more attuned to the survivor community, I see the word frequently. But what exactly does it mean? Is it the anniversary of when a person is diagnosed with cancer, as the name suggests? Or is it the anniversary of being declared in remission? (If the latter, then shouldn't it be called a Remissionversary?)

First Descents

I have never been a spontaneous person. Cancer, and all the new anxieties that have come with it, have made me even less inclined to take risks or act impulsively. So it's somewhat surprising that today I booked a round-trip ticket to Nashville, Tennessee for June 6th, returning June 12th. That's 13 days away, and I don't own a third of the items on the suggested packing list.

Why am I flying to Nashville and staying in nearby Bryson City, North Carolina? The non-profit organization, First Descents, is providing 14 other young adult cancer survivors and me with a week-long, whitewater kayaking adventure in the Great Smoky Mountains. The mission of the camp is to help survivors heal and regain their confidence and sense of empowerment.

My boss, who is involved in the organization, has convinced me that the benefits of this experience will be worth the effort it will take for me to bust loose from the cage of fear I've been living in for the past year. Thirteen days doesn't give me a lot of prep time. It's also doesn't give me enough time to properly worry and fret about all the unlikely things that could go wrong, which is perfect.

Three Down, Five to Go

I took my last four ATRA pills this evening. The headaches should end by mid-morning tomorrow. One step closer to being finished with chemo.

Mother's Day

I hope all mothers had a wonderful day yesterday. I missed being away from my mom. I couldn't have gotten through the past year without her.

Even with the side effects of the ATRA, it felt so great to be at home this year, with my daughter, instead of looking forward to a 30 minute visit with her in the family room outside the leukemia wing at HUMC. Only one more year of treatment during Mother's Day.

My mom and I singing "I Will Survive" as an ode to all the support she gave me
through the ups and downs of dating. Now, the song has new meaning.

Katelyn's Mother's Day present, which I've known about since Wednesday
when she announced that Daddy and she made me a bird house.

Remission Test Results

After checking the mailbox for the letter from the John Theurer Cancer Center, for the third day in a row, I caved and called to get my remission test result. No news should be good news, but during the wait, there's always a "What if it's bad, and they just haven't called yet?"

In this case, no news is good news. The blood sample was negative for the APL chromosome abnormality. As of May 25th, I will officially have been in remission for one year. I'm already contemplating chocolate cake choices...

At the moment, I feel a mix of relief and trepidation. This afternoon, while lying on the couch, enduring the side effects of the ATRA, I searched the Internet for APL and came across some cases of patients who have relapsed. As if the meds don't have me in enough of a tizzy right now... I want to believe the cure rate for this disease is 100%, and I hate reading any evidence to the contrary. These people are in my prayers. I pray that they will be eating chocolate cake soon too.

ATRA Round 3 (of 8), Day 1

And the fun begins...

ATRA (Al Trans Retinoic Acid, or Tretinoin)
 2 x 4 pills per day for 15 days = 120 pills

North Face Endurance Challenge - Race Wrap-Up

50 miles (and 1K) later, Ryan and Katelyn have great accomplishments under their belts and raised over $1500 for blood cancer research and patient services. In the early days of my disease the Leukemia and Lymphoma Society helped my family and me learn about AML and how to navigate the treatment process. Knowledge made my family feel more in control during the tumultous period. Thank you to all those who are helping us further LLS's critical work.

Since there were no sports commentators present at the race, I did my best:

At the finish line festival, while Katelyn and I waited for Ryan to appear from the woods

Shelley: Do you see Daddy yet?
Katelyn: No, he's late to the finish line.

Shelley: Do you think he's close?
Katelyn: No, he's probably still on the other mountain, way over there.

After Katelyn's 1k Karno Kid's Race

Shelley: Where did we run for your race?
Katelyn: Up a mountain. We walked.

Shelley: Who did you see during your race?
Katelyn: Light Buzzyear. I hugged Elmo, but not Big Bird. He was taking pictures with other children. A man took my picture at the finish line.

When we met Ryan for his final 500 yards along the trail

Shelley: How do you feel?
Ryan: [silence]

Shelley: How would you describe the race?
Ryan: Masochistic

Shelley: What did you think about during the past 13 hours?
Ryan: You, and how this is nothing compared to what you went through.
Shelley: [All choked up] Very sweet, but I'm not sure I agree.

Race Day Pics

Katelyn running to give Ryan a hug, half a mile from the end of the 50 mile course.  

Race Day

This morning, Ryan left at 3:50AM for the 5:00AM start to the 50 mile endurance challenge.
Katelyn and I are about to leave to watch him cross the finish line and to enjoy the festival.

While perusing the event site website, we noticed there is a Karna Kids 1K run at 4:00PM. After watching the promotional video, Katelyn decided she's in. All morning, she's been practicing her track start, and she's now wearing her fast shoes and her fundraiser T-shirt.

Good luck to Ryan in his last miles, and to Katelyn at 4PM! And thank you so much to those who made a donation to the Leukemia & Lymphoma Society!

Donate to the Leukemia & Lymphoma Society: Team Life's a Beach

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!