Awesome Cancer Survivor

A Patient's Decalogue

I just read Ellen's great post on a Physician's 10 Commandments over on WEGO Health. The list is very comprehensive and made me realize that many people could benefit from reading this perspective. In keeping with this theme, I thought I'd add to the great conversation by creating the Patient's version -- The Patient's Decalogue. Decalogue is the greek word for "10 thoughts." Here's my top 10 Rules for Patients:

The Patient's Decalogue

1. Always be prepared: What's the best to ensure you get excellent care? Go to your appointments prepared to ask questions.
2. Ask questions: Don't take everything your doctor says at face value. If you don't understand a term or a recommended course of action, ASK about it. If you're not comfortable with a decision or procedure, you are entitled to discuss everything with your doctor or nurses before making any decision.
3. Never leave an appointment confused or upset: When dealing with your doctor, make sure you leave an appointment with all the information you need. Appointments can be stressful at times, but make sure you don't leave the doctor's office confused or upset. Do the best you can to make sure you understand everything that's going on - right down to the routine tests or scans you might need.
4. Don't be afraid to seek out a second opinion: - Every great doctor knows that patients should be expected to and sometimes will seek out second opinions. My doctors have always encouraged me to seek out second, even third opinions when dealing with my cancer diagnoses over the years. My respect for my core team of doctors have grown over the years as I've watched them restate their beliefs that, ultimately, the patient must be happy with their course of treatment, no matter who makes the final decision. Doctors that understand this and accept this make dealing with any health condition much easier to handle.
5. Be honest: If a doctor asks if you take herbal supplements, make sure you tell them. Don't tell the docs that you take your vitamins, or prescribed drugs if you don't do that. I can't believe the number of patients that feel this "isn't a big deal!" It's a great, big deal. If you tell your docs that you "exercise everyday" or "take those multi-vitamins" and don't; you could be setting yourself up for some serious health care problems. Be open and be honest. Your doctors are there to help you - as uncomfortable or embarrassing as it might be to talk openly about a health concern, if you're not honest, it makes it difficult for the doctors to do their jobs!
6. Speak up: This is very similar to point #2. If in doubt, ask questions and speak up! Your opinion counts too. Keep in mind, as the patient, eveyone's there for you. Everyone's ultimate goal is your health. If you don't get the feeling that your medical team is there to help you, it may be time to move on. It's your life, and your health!
7. Have a family member or friend go with you: If you have concerns about recording or remembering key pieces of information discussed during your appointment, bring a family member or friend to act as your helper or note taker. When I was first diagnosed with breast cancer in 2004, I brought my husband with me to all appointments (he was my boyfriend at the time!) to take notes. He took incredible notes and recorded many bits of information I didn't recall at later dates. When dealing with a new diagnosis, you may be overwhelmed at the information being tossed out during your appointment time. Don't be afraid to ask the doctors to slow down and explain what you want to understand.
8. Talk about your pain: Chronic pain is often overlooked and dismissed by many health care professionals. It's difficult to quatify, making conversations about pain stressful for some patients and caregivers. If you're in pain, talk about it. Tell your doctor. Don't dismiss your own feelings - you owe it to yourself to always seek out the best, most comprehensive care.
9. Be respectful: Respect the people there to help you. Being respectful goes a long way to help you form key relationships with your doctors, nurses, and medical team.
   
   And finally......
10. Thou shalt not google excessively, compulsively, or with reckless abandon: This is a big one! I've fallen for this one a few times myself. Just because you can check out any and every health condition by running a search "on The Google" doesn't mean it's a good idea. When looking for information online, stick to the key sites. For cancer, I always start at The National Cancer Institute - cancer.gov. While searching the depths of the web might help you uncover all the information you think you need, it's still a wide open space, with little regulation on content. Keep that in mind when printing off reams of information to drag into your doc's office. [Yes, I've done that before...]

I've used these rules as my guidelines over the past years and I think they've served me well. What would you add?! Please feel free to add your thoughts. Tell me what guides you as a patient!

The Pinkification of the NFL

Have we finally hit the point of no return?

The National Football League announced today that all football games throughout the month of October will feature players with pink gloves, pink cleats, and pink arm bands. How effective will this campaign really be in a month when the airwaves are saturated with pink products and breast cancer awareness campaigns?

Read all about the NFL's Crucial Catch Campaign.

I just completed an unofficial, highly unscientific and unsponsored research study on the NFL.com.

 

1) I went to NFL.com.

2) In the search box, I typed prostate cancer and hit return. I received 10 hits.

3) In the search box, I typed breast cancer and hit return. I received 400 hits.

Think about that for a moment. The website that provides tons of news and content on the bastion of all manly man sports and it has only one meaningful article on prostate cancer from 2009? Why?

Then think about this: Here are the stats comparisons for Prostate and Breast Cancer from Cancer.org [PDF]:

New Cases in 2009:

Breast Cancer 194,280

Prostate 192,280

Estimated Deaths in 2009:

Breast Cancer 40,610

Prostate 27,360

Do those numbers surprise you? They surprised me. Why does the NFL throw its marketing muscle behind breast cancer? Where's the support for prostate cancer? What am I missing? Let me know your thoughts!

Health Activists - do we really need more pink? Check out my challege for October!

 

Thinking Pink and Seeing Red

I used to love October. The changing of the seasons, the foliage in New England, the warm autumn days and cool nights. Sitting by the fireplace and seeing wonderful shades of oranges, reds, and yellows on the trees outside. But these days, this month is all about pink.

For awhile, I thought I stood alone in my frustration with October's handover to breast cancer awareness and all things pink. I'm realizing there's more to the pink backlash than I first assumed. Check out some incredible articles on breast cancer awareness month, pink ribbons, and marketing ploys gone wrong.

Those pink products you assume are helping cancer research? Not so fast... - TwinCities.com by Allison Kaplan

Great infromation -- "The "Think Before You Pink" campaign encourages consumers to ask questions before buying something with a pink ribbon: How much money from the purchase goes toward the cause? Where does it go? Is there a cap on donations? What is the company doing to make sure its products aren't actually contributing to the breast cancer epidemic?"

 

Pink Ribbon Fatigue - New York Times by Barron H. Lerner, M.D.

Great quote from this article --- "It is great to celebrate one’s survivorship from breast cancer, but it would be better not to have to be a survivor in the first place."

Thinking Pink Hasn't Helped Find Causes of Breast Cancer - US News and World Report by Deborah Kotz

I think this quote from this article says it all: "Breast cancer surgeon Susan Love expressed these same negative sentiments to me. She recently published the 20th-anniversary edition of her best-selling Dr. Susan Love's Breast Book. It's much thicker than it used to be, due to bulked-up chapters with new information on the science of breast cancer and the wider assortment of treatments. But, she tells me, the chapters on causes and prevention of the disease haven't changed that much over the past two decades. "There's frustration out there that we don't know more," she says. "We're wearing pink, walking and running to raise money for research, God knows we're aware, and yet we still don't really have a clue what causes this disease.""

 

If Dr. Susan Love is frustrated -- everyone should be frustrated. Think before you Pink!

 

As Health Activists, how do we see past the pink fatigue and make sure the message of awareness, education, and treatment gets out to the people who need it most? Let me know your thoughts! Join the conversation on WEGO Health today.

Challenge for October 2010

Do we really need more pink?

What health conditions or causes are being being overlooked thanks to the breast cancer awareness wave?

We've hit the point of diminishing returns for breast cancer awareness. One more dollar or pink ribbon for awareness will simply NOT make a difference at this point. The airwaves are saturated. Breast Cancer groups fight over awareness, screening, and treatment options, all while other diseases quietly march on, claiming more lives.

There's too much pink.

 With the lack of funds for other diseases and conditions, and the lack of a marketing machine that accompanies everything in the breast cancer space, how do others rise above and get their messages out to the general public? What disease or conditions are suffering from the lack of attention and support?

For the month of October - I challenge you to post about a rarely discussed health condition.

Need some examples? Let's talk about:

HCV

Addison's Disease

Lupus

Schizophrenia

Krabbe Disease

Better yet, visit the National Organization for Rare Disorders and select a rare disease to learn about and share that information with a friend. Are you up for the challenge? Leave me a comment!

Time for more Leukemia and Lymphoma Advocacy!

Time for more Leukemia and Lymphoma Advocacy!

Another email from the LLS:

Act Now - Urge Congress to Recognize Blood Cancer Awareness Month
Your help is needed to raise awareness for blood cancers! The Leukemia & Lymphoma Society is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution (H.RES. 1433) designating September 2010 as Blood Cancer Awareness Month.

Congress has returned from recess and the sponsors of the resolution are making a strong push with their colleagues to co-sponsor the resolution. We need everyone whose life has been affected by blood cancers to join them and urge Congress to recognize Blood Cancer Awareness Month!

We need 100 co-sponsors for the resolution to gain consideration by the House. We currently have 59 co-sponsors, and your representative is NOT yet one of them! Please call the Congressional switchboard at (202) 225-3121, ask to speak to your representative's office, and ask that they become a co-sponsor of House Resolution 1433, naming September 2010 Blood Cancer Awareness Month, or visit LLS's Legislative Action Center to send them an email.

Remember that every phone call and letter counts, so be sure to send this message on to your friends, loved ones and other members of the blood cancer community. If you need help finding out who your representative is, please visit LLS's Legislator Search tool here.

If you choose to call your member's office, here are a few tips and talking points:

1) Ask to speak with a staff member or leave a message for your member of Congress.
2) Introduce yourself as a constituent, explain what the blood cancers are, and briefly tell your/ your loved one's story about living with the disease.
3) Explain that Representatives Walter Jones and Betsy Markey have introduced House Resolution 1433, which would designate September of 2010 as Blood Cancer Awareness Month.
4) Ask them to contact Representative Jones' or Markey's office and become a co-sponsor of House Resolution 1433.
5) Thank them for their time and ask them to advise you of the action they take in response to your request (leave your contact information).

Very simple way to be a cancer activist! Take the time to help out today.

Thanks!!

 

Let's pass this resolution! National Blood Cancer Awareness Month Resolution

Hey everyone, I just received an email from the Leukemia and Lymphoma Society.  We have an opportunity to help pass a congressional resolution to make September 2010 Blood Cancer Awareness month.  Move over breast cancer, here we come! Take a moment to review the information I received in the email - and take the time to write or call your US Representative today!!

Dear Alicia,

Your help is needed to raise awareness for blood cancers. The Leukemia & Lymphoma Society is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution (H.RES. 1433) designating September 2010 as Blood Cancer Awareness Month.

The resolution, which was recently introduced in the U.S. House of Representatives by Reps. Walter Jones (R-NC) and Betsy Markey (D-CO), highlights the impact that the blood cancers have in the United States each year, and encourages greater support for blood cancer research and education.

Take Action Now!

We need 100 co-sponsors for the resolution to gain consideration by the House. Please, call the Congressional switchboard at (202) 225-3121 and ask to speak to your representative, or send them an email and ask that they become co-sponsors of the Blood Cancer Awareness Month resolution. Remember that every phone call and letter counts, so be sure to send this message on to your friends, loved ones and other members of the blood cancer community. If you need help finding out who your legislator is, please visit LLS's Legislator Search tool here.

Please act now!

Talking Points:

• Ask to speak with a staff member or leave a message for your member of Congress.
• Introduce yourself as a constituent, explain what lymphoma and the blood cancers are, and briefly tell your/ your loved one's story about living with the disease.
• Explain that Representatives Walter Jones and Betsy Markey have introduced a resolution which would designate September of 2010 as Blood Cancer Awareness Month.
• Ask them to contact Rep. Jones' or Markey's office and become a co-sponsor of the resolution.
• Thank them for their time and ask them to advise you of the action they take in response to your request (leave your contact information).

The Blue Room - Urban Farm Dinner!!!

Check it out! The next Urban Farm Dinner at the Blue Room will benefit the Breast Health Center at Tufts!

I hope you can make it!  To RSVP - click the RSVP button below and sign up on Open Table.

Can't make it?  DONATE!! Click the donate button to go to the special First Giving page to make your donation today. SEE YOU SOON!

Urban Farm Dinner To benefit The Breast Health Center at Tufts Medical Center. Wednesday, June 30th, 6pm @ The Blue Room Join us as we replicate our One Long Table farm dinners "urban" style on our breezy outdoor patio.  We'll still be celebrating all that is good, whole + local fromBay End Farm, but this time we're working with The Staley Foundation and all proceeds will benefit the patients and families of The Breast Health Center. 4 courses paired with organic wines $75 MINIMUM DONATION the local farm-inspired menu will be determined that day for questions or FAQs click here 100% of your donation supports the patients and families of the Breast Health Center at Tufts Medical Center.  What does that mean?  We're talking support groups, prosthesis, wigs, transportation, peace of mind... to RESERVE             to DONATE to our cause            FORWARD to a Friend COMING OFF THE FARM... lettuces, peas, pea tendrils arugula, spinach, marjoram SWISS CHARD, GARLIC SCAPES WINES TO ENJOY... lageder lagrein rosé gysler scheurebe halbtrocken GIRASOLE VINEYARDS CHARDONNAY one kendall square cambridge, ma 02139  617.494.9034   monday–thursday 5:30–10pm, friday–saturday 5:30pm–11pm, sunday brunch 11am–2:30pm dinner 5:30–9pm unsubscribe

Buckets for the Cure?

Well, KFC has me fired up tonight.  What do you think of their new campaign - "Buckets for the Cure?"  Does anyone else think that a fast food chain that sells a pink bucket of fried chicken might be a little off the mark for a breast cancer awareness and donation campaign?  While I applaud KFC for the effort, I'd love to speak with CEO Roger Eaton about this latest promotion.

This is would I'd like to see from KFC:

1. For every "healthy" sandwich or salad option that KFC sells, they make a donation to KOMEN.
2. Don't make donations for buckets of fried chicken - donate monies when customers select the best food choices on the menu.
3. Don't launch the Double Down Chicken Sandwich at the same time you're trying to become a bastion of "cancer awareness." [Note to KFC:  If that sandwich only has 540 calories, then consider me a rocket scientist.  NO WAY]
4. Educational materials printed on the KFC bucket and handed out with all orders during this campaign.

As for Komen, I'm surprised they'd mix the Buckets for the Cure with the very successful Race for the Cure brand they've worked on for years.  Why would they mix fried chicken with running/health/exercise/energy for the sake of breast cancer awareness?

KFC is trying to make the largest one time donation to Susan G. Komen in a splashy promotional campaign.  Big deal.  I'm not impressed. 

With research showing possible connections between increased breast cancer risk and high fat diets (that's listed right on Komen's site!!), why would Komen join forces with KFC? There's only one reason --- money, and that's green.  I think Komen forgot all about their signature color: pink.

What do you think?  Is this an appropriate campaign?  Let me know!

There a great conversation rolling on over on WEGO Health!  Join me there and leave your comments!

The New Face of Cancer

Over the weekend, I got a note from Susan with some questions about head/neck/oral cancers. I started digging around on the 'net, looking for information on head, neck, and throat cancers. Any and every search combination of those cancer terms kept returning a familiar name: Roger Ebert.

I'm sure most people know Roger Ebert - one of the best film critics and long time contributor to the Chicago Sun Times. As a kid, I remember watching "Siskel and Ebert" on TV and thinking they had the BEST JOBS in the world - watch movies, eat popcorn, write a movie review! What could be better than that? I'm sure I was caught up with the 'watching' and 'eating' part of the movie review. Being a film critic is definitely not easy; countless hours go into researching, watching, and writing about a movie. His career has spanned decades and he's reviewed thousands upon thousands of movies. He's dedicated to his craft and has had a phenomenal impact on the movie industry.

Ebert's struggle with cancer started in 2002 when he was diagnosed with thyroid cancer. I vaguely remember hearing the news back then. I thought it was sad the Ebert would have to deal with cancer so soon after Gene Siskel's death in 1999 from brain cancer. I lost track of the severity of his illness after 2002. I was surprised to read he needed additional surgery for cancer in his salivary glands in 2003. Cancer invaded his right jaw bone requiring more surgery in 2006. Part of his jaw bone was removed during this surgery causing considerable disfiguration and the loss of his voice. Over the past few years, he's had additional operations in the attempt to restore his voice. He's also lost his ability to eat or drink, and takes all his nourishment through a feeding tube... Yet, through it all, he continues to review movies.

Ebert's always had a way of making me see things in films I'd have missed if I hadn't read his review. His commentary on the lighting, the musical score, the dialog, the bit actors always brings another dimension to a film. There were times when I'd read a review and I'd run right out to watch the movie again, just to "see" what he's written about in such an eloquent and vivid way. He has a way of critiquing a film that peels back layer after layer - you begin to experience hidden emotions and feelings that are right there in the open, on the big screen.

Esquire Magazine just published a lengthy article on Ebert. As a cancer survivor, I struggled to read the entire article. Cancer has a way of striking your soul and haunting you at unexpected times. Reading about Ebert stirred long lost memories and feelings. I finished the Esquire article, sat back on the couch, turned off my computer and started to cry. My heart ached for the man, a bittersweet ache in a way.

I hadn't seen a recent picture of Ebert until I read the article. You might look at his picture and see horror, sadness, pain, fear, disgust, anger..... You might look away. It's not easy to look at a picture of a man missing part of his jaw.

I see courage, tenacity, hope, strength, and beauty. I see cancer but I also see a man, standing tall after years of physical struggles and illness. I see a glimmer of happiness in his eyes. Maybe that's what I've learned from Roger Ebert, the film critic - I've learned to look at Roger Ebert, the cancer survivor, and see beauty and hope. Cancer has a face - it's Roger Ebert.

In an interview in 2007, when Ebert was asked what he thought the paparazzi would make of his post-surgical look, he replied, "Frankly my dear, I don't give a damn." I think that says it all.

April Fool's Day - 2004

When I was a kid, I loved April Fool's day. Pranks and hi-jinks were commonplace and all were in good fun. My small hometown in Western NY adopted a Canadian tradition to celebrate April Fool's day called possion d'Avril - the fish of April. The custom is to try to place a paper fish on the back of a schoolmate or teacher. I remember the plots and subplots my classmates would conjure up trying to figure out how to attach a fish to the back of our french teacher, or sneak up on the Principal. We'd always have alot of laughs and a great time on this day.

The fun and games of April Fool's day came to end for me on April 1, 2004. That's the date I had my mammogram that uncovered my first bout of breast cancer. When the technician came back into the mammography room to request a second set of films, I hoped she was joking. When she returned 10 minutes later for a third set, my stomach sank. My gut instinct told me it was cancer, and unfortunately I was right. April 1, 2004 also marks the day that I started my journey as a health activist. I'm not sure I even knew it at the time, but my experiences over the next few years would provide the foundation for where I am today.

My first step as a health activist was donating all my scans to the Museum of Science in Boston, MA. My friend Andrea was working on project to showcase the importance of cancer screenings and the five main kinds of diagnostic imaging: X-Ray, PET Scans, MRIs, Ultrasounds, and CT Scans. The exhibit is called "Beyond the X-Ray" and it's on permanent display at the MOS.

When no one stepped forward to donate their scans, she called me. Without hesistation, I said yes. I called Tufts Medical Center and made arrangements to get copies of every single film I ever had there. The medical librarian was more than happy to help me. Now, my infamous April Fool's Day mammogram films live on at the MOS. I guess you can say the rest is history. The activist spark was lit.

Here's the film:

6 years later, I've dealt with two bouts of breast cancer and feel stronger than ever. If you see me today, be on guard. I might just give you a big bear hug and hit you with a paper fish. When I'm healthy, I'm very, very happy - so, watch out!