Superstorm Sandy tests emergency preparedness of cancer patients

When Superstorm Sandy hit New York and New Jersey, it tested the emergency preparedness of many people. But for those with chronic or life-threatening illnesses, natural disasters don’t let you put your health on the back burner.

A cancer patient living in New York City writes about her hurricane experience in this New York Times blog, saying “while you can gather a first-aid kit, canned goods and extra batteries, you can’t stockpile chemotherapy drugs, antibiotics or emergency medical advice in the same way.”

People with cancer need to be particularly concerned about disaster situations because their weakened immune systems can put them at higher risk for infections, bleeding, fatigue and injury.

If you have cancer, take these important steps to be prepared in an emergency:

• Talk with your doctor about what to do and how to stay in contact in during a disaster. You can download this wallet card from the National Cancer Institute.
• Make a plan with your family, friends, and neighbors or whoever may need to help you during a disaster.
• Know your exact diagnosis, cancer stage, and any medications you take. If you are receiving chemotherapy or radiation, know where you are in your treatment cycle. This is critical information in case you are seen by a doctor who is unfamiliar with your treatment.
• If you are on a clinical trial, know the trial number (NCT number, preferably), Principal Investigator, hospital, and drugs or treatments being given.
• Be sure to have important phone numbers written down on the wallet card or elsewhere, because cell phones may not work and batteries can drain.
• If you have insurance, make sure to carry your insurance card. Contact your insurance provider in the event you are displaced and need to seek care.
• Make a kit with items you may need like dressings, antiseptic, medications, a thermometer, etc. Store them in a zip lock bag to stay dry.

UPDATE - Nov. 5 at 9 a.m.

• To manage symptoms of chemotherapy or radiation treatment, consider packing these items: if you are on Xeloda or 5FU, make sure you pack enough Imodium or “Bag Balm” cream if you have severe hand and foot syndrome. If you are on radiation treatment and have dry mouth, include Biotene mouthwash or any other OTC supplements that are recommended by your physician.

"While you may have all your paperwork and 'ducks' in a row," says Iffa Hughes, chemotherapy clinic supervisor, "symptom management is often key in helping a cancer patient feel so much better in an emergency situation."

Inspirational Moments: We are not alone

Hello my name is Marissa and I am a chemotherapy infusion nurse at Providence Centralia Hospital’s out-patient infusion center in Lacey. I have been working there for a year and half and prior to that I worked on the Oncology unit at Providence St. Peter’s Hospital.

I recently got the opportunity to participate in the Susan G Komen 3 Day Walk for the Cure. The whole experience filled me with awe to see all the people there walking to support a loved one or who were there because they themselves were survivors, and humbled me at the thought of all the people that were there to help fight against this disease. There were 1,300 people that participated in the walk.

It was amazing to see the community that was created in such a short period of time, everyone supporting one another, encouraging those that they met to keep going and letting them know that they can do it. At the end of each day everyone would gather round the finish line to cheer on the last walkers coming in.

To see such a show of support for one another was a reminder of how we are not alone and we are a part of a something bigger than just ourselves.

   

Have you ever participated in a walk? We'd love to hear about it in the comments!

If you'd like to learn more about the Susan G. Komen 3-Day you can visit their website.

Exercise and Thrive: Getting back to you

Exercise and Thrive is the result of a multi-year partnership between YMCA of the USA and the Lance Armstrong Foundation in response to the growing body of evidence that physical activity can improve cancer survivor’s quality of life, lessen treatment side effects and help recovery.

“Exercise and Thrive fills the void from the end of active treatment,” says Heather, Senior Program Director at the Briggs YMCA in Olympia. “People are given the confidence they need to use their bodies after treatment. This lets people know that exercise is safe and that they can do things that they did before the cancer.” Participants will receive support and coaching from professional YMCA staff and volunteers as well as social support from other survivors.

Additional Information

• Must have medical clearance for their doctor or nurse practitioner to participate.
• Cancer survivors must have completed active treatment.
• All participants will receive a free 12-week South Sound YMCA membership, which includes access to both South Sound YMCA facilities.
• After completing the program, participants will be offered the opportunity to join the South Sound YMCA without paying a joining fee.

The South Sound YMCA is excited about partnering with Fred Hutchinson Cancer Research Center to provide this amazing opportunity in Thurston County. The initiative is a key component of Activate America®, the YMCA’s bold approach to directly address our nation’s growing health crisis. Through Activate America, the YMCA is redefining itself and engaging communities across the country to provide better opportunities for people of all ages in their pursuit of health and well-being in spirit, mind, and body.

Olympia Downtown YMCA 
510 Franklin Street SE
Olympia, WA 98501
(360) 357-6609
Class Days: Tuesdays and Saturdays
Class Time: Tues: 6:30-8 pm, Sat. 9:30-11:30 a.m.
Class Session: September 11—December 1, 2012
For additional information, please contact Member Services at 360.357.6609

Briggs Community YMCA
1530 Yelm Highway SE
Olympia, WA 98501
(360) 753-6576
Class Days: Mondays and Wednesdays
Class Time: 2:00 p.m.—3:30 p.m.
Class Session: September 10—November 28, 2012
For additional information, please contact Member Services at 360.753.6576

Do you have chemobrain?

Editor's Note: PRCS is posting the following post on behalf of the University of Washington Memory Health Program.

Are you a cancer survivor who is struggling with concentration, word and name recall, or keeping track of things? You are not alone.

Millions of cancer survivors are living with memory or thinking difficulties often referred to as “chemobrain.” Many survivors find this impairment so severe that it interferes with basic activities of daily living.

The prevalence of chemobrain is hard to pin down, with estimates of cancer patients affected ranging from about 14 percent to as high as 85 percent. While researchers agree that its occurrence is much more dependent on the type of treatment than on the specific type of cancer, little is known about who is most likely to suffer a long-term deficit or how to guard against it. Source.

At the University of Washington Memory Health Program, we are searching for new ways to address daily thinking difficulties in cancer survivors. We are conducting workshops to learn how to improve thinking and memory abilities. In the workshops, we provide resources and offer practical, everyday solutions.

This program consists of 7 one-hour group-based workshops and pre- and post-workshop memory tests. If the group-based memory skills workshops are effective, participants may experience improved thinking abilities. Additionally, taking part in research provides participants with a unique opportunity to contribute to new ways of promoting health and treating disorders.

We generally hold our workshops in Seattle, but we are currently searching for eligible participants in the South Sound so that we can conduct workshops in Olympia or Tacoma. If you are interested in participating (in Seattle or South Sound), please contact us at (206) 277-1041 or toll free at 866-577-1913 or email us at wellness@uw.edu.

It was a Sunday morning...

Editor's Note: We are honored to have A.W. Gryphon share her story of diagnosis with us.
Allison W. Gryphon is an Author, Filmmaker, Creator of The Why? Foundation and a Breast Cancer Survivor. You can also find her on facebook >>

It was a Sunday morning. I’d been up early for a pilates class and I was just out of the shower. I had brunch with my friend Joaquim and a matinée with my standing weekend movie buddy, Elissa.

Getting dressed, I went to put my bra on and it didn’t quite fit right. I re-adjusted and then I froze. I was standing in front of my closet in a small room that suddenly seemed massive and empty… and painfully quiet. I think when someone feels a lump for the first time and they know in their gut what it is, the world does truly stop spinning, just for a moment. Just long enough for you to hear your own heart beating, to feel what it means to take a breath and to know not only the full weight of your body, but of your being.

It was Sunday morning so there were no doctors to call or appointments to be had. It would be something to be taken care of the next day. Everything would change. I knew that. So I got myself dressed and went out for a lovely brunch with Joaquim then off to see Julian Schnabel’s new movie with Elissa. I said nothing to my friends and it was a wonderful. The presence of the lump was never far from my thoughts, but I wanted a day of love and friendship, not fear and concern.

My Monday began with a trip to an Urgent Care Clinic, the fastest way I could get the referral for a mammogram. I was at a highly recommended breast center at 7am Tuesday morning. First there was the mammogram, during which the technician suggested we take a few extra views for the doctor, then came the ultra sound, then the doctor, then the second ultra sound and then the smile. That smile of hope and encouragement and knowing how much trouble I was in that I will never forget. “We’re going to do a needle biopsy.” The wonderful doctor said kindly taking my hand and meeting my eyes to hers.

I don’t know how to describe what was going through my head at that moment. Everything. Nothing. I knew what it was and I knew it was happening, but I hadn’t connected those thoughts. It was like I was watching a movie, but it was me.

The following day, I went to work. I went to normal. That’s what I needed to do. Just before lunch my phone rang. It was the same lovely doctor who’d done the needle biopsy the day before. “We were all pulling for you.” She said… And then she told me what I already knew was coming.

It’s one thing to know what’s coming, it’s another matter all together to hear someone say it out loud. Someone you don’t know, but who in one instant will have changed your life forever. I know that what followed were words of support and encouragement. I don’t remember them. I do remember hanging up the phone and looking at the buttons, not quite sure what to do with them. The room was heavy and there were people on the other side of my closed door waiting. People who had assured me that everything would be ok, not just for me, but for themselves. There were friends, colleagues, people I cared about and people I didn’t know out there. Everyone who the explosion was going to hit once I opened the door.

It took almost a half hour. I looked at the door for a long time. It was real for me, but once I opened that door it would be real outside of that room.

The first person I saw was Jude. She was sitting in a chair right outside wide-eyed and steady. I’m not sure if they were all there already or if they heard me come over, but within a moment Shannon, Mary Beth and Jackie were looking back at me amongst a busy office full of people who were about to find out.

I don’t know if the assault of the cancer on me or of the news on everyone else was more jarring. What I do know is that’s the day where I found out what I was made of and when I found out who all of the people on the other side of that door really were.

It was the most devastating and beautiful day of my life. And that is how my battle with stage IIIa breast cancer began on Wednesday April 13, 2011.