2 Days to Honor Twins Tracy, Dana and Millions

This Saturday, October 29, at 9am, Mathis and I and friends will be the “Dana’s Gladiators” team in the American Cancer Society’s “Making Strides Against Breast Cancer” walk. Rain or shine. I’m honored to be this event’s Survivor Ambassador, as well.

We’ll be walking in memory of my twin sis, Tracy and I miss her so much. That’s the hard part about this walk.We’re also walking to raise dollars for research we so critically need AND for programs that help patients.

Some of you have already donated this year and many donated last year. Wow, thank you so much!

Click here to donate:  http://tiny.cc/DanaStrides

Your money goes right to patient programs and breast cancer research. As an example:

  • $100.00 pays for a patient to have one-on-one peer support such as a new chemo patient talking with an experienced one.
  • $100.00 pays for 4 patients to access the 24/7 cancer hotline for information and questions.
  • $100.00 pays for 10 rides for patients who can’t get a ride to treatment.
  • $500.00 secures 5 hotel nights for under-served or remote patients to stay during a surgery or treatment.

For those in Seattle, the walk is free this Saturday and get a limited-edition T-Shirt for Dana’s Gladiators! Register here:  http://tiny.cc/DanaStrides

Oh, “no pressure” but I’m the 2nd largest fundraiser so far…and that’s just not good enough, right?  Help Dana’s Gladiators get to #1!

Thank you so much for your donation here!

With huge hugs and gratitude,

Dana

Just a little passion...

Just a little passion…August, 2016 Strides Event Kick-off

 

 

Cancer Blog Update: No News is Good News

It’s so great hearing from friends and family all over the world. Your care, concern, and warm wishes are true blessings.

Some of you have asked “what’s going on with…that…you know…that…thing.” Awkward, eh? Go ahead; you can say it. “What’s the latest with your cancer?”  Oh, that stupid cancer thing, yes. And some of you are on Facebook but others rely on this blog so here it is!

Well, remember the blog article WE LOVE NED giving the results of my scans at the end of January?

NED is my best friend! When speaking of breast cancer, the term No Evidence of Disease (NED) does not mean that the disease had been cured, since recurrence can’t ever be ruled out. To be classified as NED means there is “no evidence of any cancer present that can be detected by studies such as blood tumor markers, CT, MRI, bone, or PET scans.” NED is very good!

GREAT NEWS:  My early August scans were also NED, yippee!

Still Adjusting to Living with Stage IV Breast Cancer

There are many more days that I DON’T think about cancer than those when I do. This is a great thing!  If you can, visualize an EKG or polygraph chart with the zigs and zags – that’s my “emotional response chart.”

My emotional spikes are not only farther apart, but the depth of the “zags” (the down swings) is shallower and lasts a shorter time. I stopped reading other Stage IV metastatic patient blogs (we’re called Metavivors) since it was depressing me. However, if you want to learn more, here is a link to a great organization.

I’m staying in shape by my favorite new thing, Pilates, and playing golf with Mathis.

Pilates Dana!

Pilates Dana!

Mathis and Dana Golfing in Napa_072016

Mathis and Dana Golfing in Napa_072016

Lots of travel and good times, for sure!

Earth, Wind & Fire! 2 nights, dancing in the aisles!

Earth, Wind & Fire! 2 nights, dancing in the aisles!

Mathis and I went to golf boot camp in Napa Valley, numerous outdoor music concerts, and have a golf week in Scottsdale scheduled in October, Then off to L.A. for Thanksgiving, and our annual trip to Mexico in December with Mom (Ilse).

We love comedy shows, seeing friends, going to movies, and just hanging out at home. Shane, Chad, and Milo are doing amazingly well, as are Mathis’ girls, Christina and Leslie. Christina and Brian are getting married in 2017!

Mathis and I were featured in an article, thanks to you!

Many of you donated to breast cancer as a fabulous wedding gift last year, culminating in our raising over $17,000.  We just celebrated the first anniversary of our courthouse ceremony and we are so very grateful. My medical center, Virginia Mason, featured us here.

Article on Giving with a Party

Article on Giving with a Party

 

Small TV clip on a segment of how we deal with adversity

TV Clip_0816

TV Clip_0816

This summer there was a series of very tragic events in Orlando, Nice, Dallas – and at home in Puget Sound, so in early August, a local news station decided to focus on unique positive perspectives. They called the morning of August 1, came to our house and did the filming, and broadcast this video that evening.

http://www.king5.com/life/finding-hope-in-the-midst-of-tragedy/285637085

 

 

Kick-off to our BIG event in October, Breast Cancer Awareness Month

This past week, I spoke at the American Cancer Society’s kick-off for “Making Strides Against Breast Cancer.” For the second year in a row, I am their Survivor Ambassador and my goal was to inspire breakfast attendees to start a team for the October 29, 2016, event in Seattle.

And a number of you have asked for the short speech I gave so here it is:

“I didn’t choose this.

  • …3rd battle with breast cancer starting last year
  • …now facing Stage IV metastatic breast cancer – the last stage
  • …no possible remission – only NED or NO Evidence of Disease

I didn’t’ choose to lose my identical twin sister, Tracy, to breast cancer 2 years ago.

I AM choosing to LIVE with cancer.  Yes, BIG “LIVE” and little “with cancer”

  • …I got married to my love, Mathis, while in chemo and we threw an enormous party to celebrate life and marriage.
  • …Oh, Mathis and I CHOSE to say “absolutely, positively NO gifts…only donations to breast cancer research.”

We raised $17,000 in one night!

Show of hands!  

  • How many of you have a birthday between now and October 29? Keep your hands up. 
  • How many of you have an anniversary before October 29? Keep your hands up.
  • How many of you will have a football or sporting event party at your house?
  • Finally, how many of you have 25 friends you can e-mail to donate?

GREAT!   EACH of you now has a choice. 

  • You can put out a jar or take your guests to your new Making Strides web page and ask for walkers and donations.
  • Or you can, well, do nothing.

Let’s make this go viral. 

The concept of any gathering including donations to a cause. And, I guarantee, we WILL make a dent in this breast cancer crap. 

Hey, if a mom in a gorilla mask can go viral, why can’t we start something big?

Starting today, with the team you will form, simply ask people around you to contribute to your efforts to crush breast cancer.

It’s so easy to do and you just showed that each of you have plenty of opportunities during the next 2 months! 

Breast Cancer is not in my control.  I didn’t choose it and, well, it sucks.

But taking some action today IS in my control.  I’ll be leading Dana’s Gladiators again this October at the Making Strides Against Breast Cancer walk. 

What will you choose?   Right now.  Don’t think.  Just CHOOSE.  Thank you.

Just a little passion...

Just a little passion…

Kick-Off for the American Cancer Society

Kick-Off for the American Cancer Society

 

 

 

 

 

 

 

 

Finally, “Dana’s Gladiators” will walk again this year at American Cancer Society’s “Making Strides Against Cancer” on October 29, 2016

We’re walking in memory of my sister Tracy, in honor and memory of others, AND in the hope that researchers can erase this stupid breast cancer. It’s my one big fund-raising event every year and my web page is now “open for business” until the event on October 29.

http://main.acsevents.org/goto/DanasGladiators_2016

Last Year's "Making Strides Against Breast Cancer" Walk in Seattle

Last Year’s “Making Strides Against Breast Cancer” Walk in Seattle

 

My family is sending huge hugs to each of you and I am so grateful for everything.  Yes, everything.

Love,

Dana

Just Call Me Lucky

Most days (unless I am having a pity party) I feel lucky. No, I am lucky. Period.

However, you should see me now!  At this moment, I have a huge boot on my left foot from surgery, am missing a right breast, have 2nd degree burns from radiation, and have scars down the left side of my body from thoracic surgery. This wonderful  old joke comes to mind:

Lucky the Dog

Now, since I an LUCKY, I get to brag about recent events in January.

Brag Highlights:

  • January 23, 2016 Marriage Celebration for Mathis and me
  • January 26, 2016 Great Cancer News – NED – Non-Evident Disease
  • January 30, 2016 SAG Awards in Los Angeles
  • January 31, 2016 Mom’s brunch celebrating our marriage

Marriage Party to celebrate such a happy occasion

The most fabulous result from the party is that we raised over $15,500 for the Virginia Mason Cancer Institute!  My wish:  If we all took our combined birthday, anniversary and other parties and said to our guests “absolutely, positively no gifts…just donations to…” imagine the impact we can make on any cause!  A heartfelt thank you to all of you who donated from Mathis and me. It’s never too late to donate any amount at any time.

I’m lucky that I have Mathis who has been by my side for the last 10 years for all the ups (and the few downs). He shares his love in so many ways, not just to me, but to my entire family.

The life memory from this evening was seeing our amazing family and friends who came in from London, NYC, Chicago, Houston, L.A. and more. Naturally, enjoying this event with our 4 kids, Christina, Shane, Chad, and Leslie, was amazing.

 

Awesome Cancer News on January 26

In case you missed the good news, see this post.

https://danamanciaglicancer.com/2016/01/27/today-i-crushed-dominated-kicked-butt-conquered-ruled-and-smacked-down-cancer/

Remember, I’m lucky. There are too many hundreds of thousands of men and women that are not as lucky, which is why we need to do what we can to help them.

Great Party – the SAG Awards in L.A. on January 30

Mathis was able to take his daughter, Leslie, to this year’s award ceremony, but he got an extra ticket for me at the last minute!  What a great reason to get all dressed up, what a fun show, and it was so great to see Mathis’ friends and co-workers from the SAG-AFTRA union who have been so supportive to our sucky year in 2015.

 

Marriage celebration brunch, hosted by Mom (Ilse!)

Another fabulous celebration in L.A. on the morning after the SAG Awards with more family and wonderful friends. Lynn, my sister, flew in from Florida, and Leslie, Shane, Chad, and Milo were there, too!

Tidbits:

  • My dear friend, Julie Manciagli, sent me this in a recent card:

“Life is 10% what happens to you

  and 90% how you react to it.”

                                -Charles R. Swindoll

  • As I mentioned at the beginning, I sometimes look in the mirror and want to laugh…or cry. Seriously, my meditations include positive affirmations, thanking my body for doing all it can do to be the best body for me. Humor is the best medicine so when Mathis isn’t around to laugh with me, I laugh with my friends, and share things like this!

framed

 

  • My foot surgery was very successful on February 3rd, thanks to Dr. Heit at Virginia Mason. I’m now sleeping in a boot and non-weight-bearing for 8 weeks then another 6 weeks in a walking boot. Well worth the long-term improvement in my quality of life and resulting golf game.

I’ll leave this blog post with a few of my favorite signs:

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thCAZEQEJG

 

FB_IMG_1454950007156

Love and hugs to everybody!

 

Today, I Crushed, Dominated, Kicked-Butt, Conquered, Ruled and Smacked Down Cancer!

This happy face is what my oncologist, Dr. Robinson, handed Mathis and I TODAY while we were in the waiting room completely nervous about the results. It’s drawn on the back of my CT scan report.

We’re thrilled so please join us in our celebration for so many wonderful things.

Educational article: Some of you saw this on Facebook, but here it is again…and explanation of my new world of living with Stage IV cancer.

A Cancer Explainer: Metastatic Cancer

I am one of the lucky ones declared NED – No Evidence of Disease.  Read about that in the article, too.

My next scans are in 6 months and I’m on two types of treatment in the form of pills and shots so we’re still attacking this stupid, vicious disease.

Fun times ahead:

  • Off to Los Angeles tomorrow morning to attend the SAG Awards Saturday night with Mathis and his daughter, Leslie.  Then a marriage celebration hosted by my Mom, Ilse.
  • Fixing my foot with big surgery on February 3 for 8 weeks non-weight-bearing so party at Dana and Mathis’ house!

None of this can be done without your love and support. We know that positive attitudes and love are making a huge difference in our lives.  Every day.

Love and hugs,

Dana and Mathis

 

 

Eager for a New Year – Cancer Free, We Hope

This time last year, I had big plans. Grow my business, travel internationally, and play tons of golf with Mathis. On February 22, 2015, I was shocked to learn my cancer had returned as Stage IV after 2 prior occurrences. Right after losing Tracy, my womb-mate in May, 2014. Since then, surgery, 20 weeks of chemo, another surgery, radiation and pills for life.

Who knows what is around the bend in 2016? Nobody. And that’s my new reality. Living with cancer for the rest of my life will be a true test of my emotional strength. That reality also sucks because it impacts my family and friends around me. I wish I could erase 2015 by using the Men in Black neuralizer. But I can’t.

What can I do? Believe me; I’ve spent many days thinking about this, day and night.

My Key #1: Control what I can control

Here’s what I can do:  (and what I enjoy doing)

  • Exercise – Half-way through radiation, I started Pilates on a reformer at my Club Pilates in Bellevue and I’m addicted to it. For me, it’s exercise with stretching, breathing and within a safe, stable environment with great instructors.

    20151227_110029 - cropped

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  • Laugh – Mathis and I kicked in the New Year with watching Amy Schumer live on New Year’s Eve and we’ll be going to more comedy shows and concerts going forward. If you have ideas, count us in!DSCN3718
  • Spend quality time with family and friends – I’ll be home a lot, especially in the first half of 2016 since I need foot surgery on February 3. Unrelated to cancer, I need to repair my big toe with surgery that requires a long recovery. So open invitation to come on over!
  • Love – I’ll treasure all the times I’ll spend with Mathis, my children, family and friends. I’ve learned to just “be” and not feel the need to go out or entertain.VZM.IMG_20160101_102422

 

My Key #2: Face my fears and talk about them

Although I appear optimistic and upbeat, which I am, I do have moments of pure anxiety. Fear of the unknown, sadness, tired of being the patient, and worry. I am seeing friends who are further along in their stage IV path and it’s hard.  While I don’t want to wallow in my cancer life, I can’t stuff it, either.

So, warning: if you ask me how I’m doing, you can expect a wide variety of answers, depending on the moment.

My Key #3:  Take one day, week and month at a time

While I will keep planning things for the long haul, I’ll also just continue through the steps my great Virginia Mason medical team advises. Here’s what’s coming:

  • I just started new cancer treatment pills, called aromatase inhibitors, which will block estrogen production. https://en.wikipedia.org/wiki/Anastrozole. I will be on this the rest of my life.
  • In January, I will start another pill. It’s a new use of a drug used for osteoporosis; however, now used for metastatic (https://en.wikipedia.org/wiki/Metastasis), post-menopausal breast cancer patients. The theory and recent findings show that by strengthening the bones, we may be able to prevent my cancer from spreading there.
  • January 26: big scan day with the findings that same day. Then every 4-6 months after that.

================================================

The following helped me, so I thought I would share it: My dear friend, Mary Foss-Skiftesvik, shared these wonderful insights from her friend, Dr. Dale Atkins, a psychologist, speaker and consultant:

In times of illness, particularly prolonged illnesses, people often have a difficult time adjusting to the significant changes we experience in our lives.  Old familiar habits and rituals that shape our daily routines often become more challenging.  The inability to do something as well as before (or not at all) has the potential to zap hope and add to a feeling of despair.

Generally, when we are ill, our energy levels decrease. Sometimes this is hard to accept.  We may be used to, consciously or unconsciously, equating our productivity and energy level with our personal worth.  Even though we are learning ways to adapt that help to maintain our health (making previously “simple” tasks, doable), we may still feel frustrated and disappointed that we cannot to live up to our image of who we were before the illness.  We may judge ourselves harshly, questioning that we lost our “work ethic” because we no longer perform at our previously high standard.  We may compare ourselves with others, feeling guilty that because we need to attend to our illness (need to rest more, attend to side effects of medications that affect the way we think, feel, or move), we haven’t “accomplished” much.  This thinking can result in our overextending ourselves when we are just not able, inhibiting both the healing process and living healthfully.

It is during these times that we are wise to readjust our focus.  Accept what our capabilities are at this time and figure out what we need to do now.  The question is not one of self-definition, “Who have I become?” But rather, one of self-assessment, “Given what I am facing now, what can I do or not do?”  When we compare our self to others, or to what we capable of, we can observe, just take notice.  It is important to resist becoming entangled in a downward cycle of despair and regret.  We can stop our self and tell our self that for now, there is a new standard and we can learn to adapt as we meet it.  This awareness of where we are at this moment helps us to accept and adapt while keeping our sense of self intact.  We focus on what our strengths are, and what remains and can improve, rather than what is gone.  Such self-acceptance can lead us to feel a significant relief of pressure and a renewed sense of gratitude, contentment, and hope.

Illness is about adaptation to change and acceptance.  Along the way, there is an opportunity for spiritual growth.  A spiritual journey during illness can begin with simply noticing the feelings that come up when we think of not being able to work or accomplish projects because of our illness.  Are we comparing our self to others, whether or not they, too, are ill?  Do we view our personal worth as diminished as a result of these comparisons?  When we focus on healing and doing what is necessary to find our spiritual center we are more likely to notice an inner resilience and strength that we may not have been aware of before.

http://dratkins.wpengine.com/spirituality-during-illness/

Thank you, Mary        cropped

Happy Updates:

Our family vacation during Thanksgiving in Puerto Vallarta was fabulous. Mathis, Mom (Ilse), Shane, Chad, Milo, Greg and I enjoyed the sun, great meals, zip-lining (the boys) and lots of laughter.  You can see some of the photos here. https://share.shutterfly.com/share/received/welcome.sfly?fid=b348c3c68fb85719&sid=0AcM2LFq1Zt2jJYA

Christmas time was fun, as well, with Shane and Chad flying into Seattle for about 4 days. Lots of eating, watching football and Scrabble.

I’m already loving the new year and there is something magical about January 1st and being able to say “adios” to 2015.

My new year’s resolutions recommendation to you:  Make time for your family and friends; tell them how much you love them (often); listen more than you talk; complain less; and slow down to enjoy the wonder around you!

You don’t know how good you have it until you face mortality.

Love and hugs,

Dana

 

 

(top feature photo taken by Alison Jensen, friend and wife of the fabulous Paul Jensen)

Fun Things and Cancer Update

Fun Thing #1 – I’m Honored!

On Thursday, November 5, Mathis and I attended the American Cancer Society’s Legacy and Leadership Awards Ceremony in downtown Seattle. This annual ceremony honors local donors, volunteers, researchers, and community and corporate partners.

I’m so touched to be the recipient of the Gordy Klatt Impact Award. Rob Smith, the Editor in Chief at the Puget Sound Business Journal said the following words:

Dana Manciagli is a 3-time breast cancer survivor with a truly amazing story. She has done much work for the American Cancer Society this year, including sharing her story with the Seahawks and Sounders to increase awareness of breast health and “Making Strides Against Breast Cancer of Seattle.” Take a moment with me to learn more.

< Then they played the Seattle Seahawks video about my cancer story: http://www.seahawks.com/video/2015/10/27/beyond-decibels-danas-story>

I want to remember a remarkable man who was one-of-a-kind. Dr. Gordon “Gordy” Klatt was founder of the American Cancer Society Relay for Life event and passed away on August 3rd, 2014 at the age of 71 from heart failure after battling stomach cancer.

He helped shape an idea that started off as one man running and walking a track, and turned it into a global phenomenon for saving lives in every corner of the world, the American Cancer Society’s Relay For Life. The Dr. Gordy Klatt Impact Award honors the spirit he carried that one person can make an impact on the World.

This year we are proud to honor Seattle’s Making Strides Against Breast Cancer Survivor Ambassador, Dana Manciagli. Dana has an amazing story as we just saw in the video but more than that she inspires action. Dana has raised nearly $30,000 dollars for Relay for Life of Bellevue and Making Strides Against Breast Cancer of Seattle since 2014 and is the leader of Dana’s Gladiators which heads up 10 other teams also raising money for Strides.

Dana speaks to the power of American Cancer Society programs and services and the importance of early detection. She is a spokesperson, advocate, and leader for the entire organization. It is our honor to award Dana with the Dr. Gordy Klatt Impact Award. Sharing your story is saving lives, thank you.

* * * * * * * * *

I was so happy Mathis was in town to join me at this wonderful event.

Mary-Claire King, PhD, discovered the BRCA1  gene; world-renown

Mary-Claire King, PhD, discovered the BRCA1 gene; world-renown

Listening to the introduction

Listening to the introduction

I was quite emotional after seeing Tracy up on the big screen during the video

I was quite emotional after seeing Tracy up on the big screen during the video

Fun Thing #2 – Day Trip to San Francisco

My travel has been constrained due to stupid radiation every Monday-Friday for the last 6 ½ weeks. However, I took off this past Saturday and headed for San Francisco to visit Shane for the day. He picked me up at the airport and showed me so many gorgeous areas. We had a pig-out brunch, saw amazing views on a beautiful day, relaxed at his apartment in the city then grabbed a quick bite before I flew out. Lots of fun!

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Mom and son in the sun!

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Such a great kid (okay, a 27 year old kid)

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Peaceful scenery, great walks

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The Golden Gate bridge never ceases to amaze.

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Shane took me to his favorite running places. We drove, of course.

Cancer Update

As of this writing, I have 1 more radiation treatment left; I’m done on Monday, November 16th.  Radiation got progressively harder, and it was harsher than my radiation on the same side back in 2002, it was okay.  A large area of skin and tissue is severely burned right now so I have quite a collection of topical treatments as well as pain meds.

Next treatment: I will start a pill regimen that I will continue the rest of my life to keep this cancer at bay.  They are called aromatase inhibitors and mine will be anastrozole (Arimidex®). Anastrozole works by inhibiting the synthesis of estrogen and is an effective treatment for my stage IV “metastatic hormone-receptor-positive” breast cancer.

I will have my big scans at the end of January, 2016. Gulp.

Please keep the happy thoughts, fun time invitations, and prayers flowing! Each one of you is making a huge difference in my recovery and ongoing battle against this stupid cancer.

Off to Puerto Vallarta, Mexico next week with Shane, Chad, Milo, Mathis and Mom (Ilse) for a great Thanksgiving week. We have so much to be thankful for, we’ll remember good times with Tracy, and we’ll celebrate many things!

Love and hugs,

Dana

C-R-A-Z-Y Day with the Seattle Seahawks

To culminate a busy October as Breast Cancer Awareness Month, Mathis and I were invited to watch the Seattle Seahawks practice in their indoor practice center!  This past Thursday, October 29, we went to the Seahawk’s VMAC or Virginia Mason Athletic Center. Virginia Mason is my medical center and Cancer Institute, too, so everything is wonderfully connected in our community.

20151029_133700

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Don’t you love how the referee letters say UH?

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These guys are so much larger than they appear on TV or at a game!

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Some serious stretching along with some great tunes playing

We watched these huge boys practice from 2:00 to 3:30pm with other guests on the sidelines such as police officers. R&B and Hip-Hop music was blaring from enormous speakers while the Hawks stretched, ran drills and ran real plays with real officials.

Once the practice was over, Mathis and I were surprised to be the only visitors to be escorted onto the practice field. Then, we were overwhelmed with players and coaches wishing us well on our cancer journey and autographing two footballs.  One was a real game ball used in their prior game!

Special attention by the team!

Special attention by the team!

Those we got to talk to were Russell Wilson, Coach Pete Carroll, Earl Thomas, Steve Hauschka, Clint Gresham, Chris Matthews, Bobby Wagner, Assistant Offensive Line Coach, Pat Ruel, and more!

Our wonderful Russell Wilson, QB and amazing community member

Our wonderful Russell Wilson, QB and amazing community member

My new friend, Pete Carroll, Coach of the Seahawks!

My new friend, Pete Carroll, Coach of the Seahawks!

Game ball signed by players and coaches who talked with us!

Game ball signed by players and coaches who talked with us!

The Seahawks management team, coaches, employees and players really get involved with their causes and donate an incredible amount of time and dollars into supporting breast cancer. For example, above and beyond what the NFL does, the Seattle Seahawks donated about $40,000 directly into taxi vouchers for patients to use to get to their treatments. All administered by the American Cancer Society of Seattle.

During the month of November, the team is focusing their support on our veterans and their important needs. Go Hawks!

More photos from this great day can be found here

Date night last night

Mathis and I had a great time doing something we used to enjoy often but just forgot about!  We went to our local pool and comedy club and played pool, had munchies and beverages.  We talked about how lucky we are to have all of you in our life so here are some smiles from us to you!

Love and hugs to each of you,

Mathis and Dana

Date night playing pool on October 31, 2015

Date night playing pool on October 31, 2015

Dana’s Cancer Story on the Seattle Seahawks Website

The American Cancer Society and the Seattle Seahawks partnered to produce a high-quality video about my cancer journey with my dear twin sister, Tracy. It’s just over 5 minutes long so sit back and enjoy.

I can’t say THANK YOU enough to each and every one of you for your love and support.

CLICK HERE:  http://www.seahawks.com/video/2015/10/27/beyond-decibels-danas-story

Sporting my new, post-surgery body at the Seahawks game with Nikki Guggenheimer

Sporting my new, post-surgery body at the Seahawks game with Nikki Guggenheimer

Busy Week and Rewarding Weekend – Lots of Pink!

Whew! I’m exhausted but feel wonderful. There is nothing more rewarding than to give back and help much less fortunate cancer patients and future generations. And to memorialize Tracy while being surrounded by family and friends. There were two major events this week: The Seattle Seahawks “Crucial Catch” game on October 5th at home which was dedicated to breast cancer and the “Making Strides Against Breast Cancer” family walk on October 10th.

Media leading up to the big events

As the Survivor Ambassador for the American Cancer Society’s “Making Strides Against Breast Cancer” family walk, I was honored to do a number of TV and Radio interviews.

Here is one interview at 7:30am on the Seahawks game day: http://www.king5.com/videos/news/health/2015/10/09/american-cancer-society-raises-awareness-about-breast-cancer/73659992/

King5 live outside the stadium for game day

King5 live outside the stadium for game day

Joyce was so sweet

Joyce was so sweet

Interview being filmed_100515_KING5

Interview being filmed_100515_KING5

Here is a 2nd one at 1pm before the Seahawks game:    http://www.king5.com/story/sports/nfl/seahawks/2015/10/05/seahawks-go-pink-for-breast-cancer-awareness/73414374/

Seattle Seahawks Game on October 5th – Dedicated to Breast Cancer Survivors

In spite of press that indicates otherwise, the NFL does a lot during the month of October to raise awareness about early detection/screening, raising dollars for research, and partnering with local organizations, such as the American Cancer Society, to support programs that are so important to patients, caregivers, families and more. You can read about the NFL’s Crucial Catch program here: http://www.nfl.com/pink?campaign=dk-nf-bc-ro-nf-1100880

For the first October home game, the Seattle Seahawks featured survivors and patients, before the game, at half time, and during the entire game. We were on the field during the anthem, and at half-time and my short stint in modeling the Seahawks Pink Gear were on the jumbotron throughout the game.

The pink semi-circle around the performer were all survivors, including me!

The pink semi-circle around the performer were all survivors, including me!

We were out there to form this ribbon...so fun

We were out there to form this ribbon…so fun

VZM.IMG_20151005_191705

Jumbotron featuring 3 survivors and I throughout social media all month!

Jumbotron featuring 3 survivors and I throughout social media all month!

And, finally, the big Breast Cancer Walk: “Making Strides Against Breast Cancer” for the American Cancer Society.

Mom (Ilse), Milo (Tracy’s son) and my sons, Shane and Chad, all flew in for the weekend. Plus, my team, “Dana’s Gladiators” raised over $22,700 for this wonderful cause, about 12% of the day’s fundraising success. Thanks to friends who had their own teams hanging under my team, and to donations by so many, we not only made a huge impact on breast cancer (supporting research, support programs, screening and more), but we had 50 gladiators walking together, showing our power.

I gave a speech at the beginning about celebrating three things:

  1. Surviving and thriving. We are not just survivors and cancer-conquerors, we are all advocates for so many who are less lucky than we are. We, at the race, are blessed with being survivors and that we need to consider those cancer patients who are sick today, out of treatment options and relying on research to deliver trials. That’s where our dollars go.
  2. Birthdays. Use October as a birthday to remember to get your mammogram and, men, encourage all of the women around you to do so, as well. Beating breast cancer is all about screening to catch it early.
  3. Gratitude. Those of us here today came from our cozy beds, wearing layers of clothes, and drove in our nice cars. However, what about the medically disadvantaged who don’t have access to health care and can’t afford cars to get to treatment? The NFL’s Crucial Catch program and the American Cancer Society’s Road to Recovery program are just a few examples of efforts to help the disadvantaged.

 

Dana, Shane, Ilse and Chad

Dana, Shane, Ilse and Chad

Dana's Gladiators after a wet walk

Dana’s Gladiators after a wet walk

Mathis and Dana singing in the rain

Mathis and Dana singing in the rain

Dana, Gwen and Breeze

Dana, Gwen and Breeze

The 'Survivor Ambassador' speaking!

The ‘Survivor Ambassador’ speaking!

Treasuring the moments

Treasuring the moments

My #1 Supporter - I love you, Mathis

My #1 Supporter – I love you, Mathis

Dana, Milo, Ilse, Shane, Mathis and Chad

Dana, Milo, Ilse, Shane, Mathis and Chad

Daughter-Mommy time on the walk

Daughter-Mommy time on the walk

Milo Frank and me at the end!

Milo Frank and me at the end!

To see all of the pictures (thanks to Greg Manciagli), please go here:

https://www.shutterfly.com/action/welcome?sid=0AcM2LFq1Zt2jIvA&emid=shareprintviewer&linkid=link

Every one of you who donated, sent warm wishes, and who walked in the rain, THANK YOU!

Stupid Cancer Update:  Finished week one of radiation – only 5 ½ more weeks to go!

At 9:45am every morning, Monday through Friday, I go visit my Virginia Mason radiation oncology department. I leave my house at 9am, then I am on the table at 9:45am for about twenty minutes then done. They are radiating 3 separate areas so I’m a complicated case, they say. I also hold my breath for about 20 seconds multiple times to separate my heart from the radiation field.

Note: Puzzles and fish are standard equipment for waiting rooms. So are hideous olive green robes that make me look washed out.

Puzzles n' Fish, Puzzles n' Fish, etc.

Puzzles n’ Fish, Puzzles n’ Fish, etc.

Beautiful green robes...not my color

Beautiful green robes…not my color

Thank you for listening and being so wonderful every day.

With love and hugs,

Dana Manciagli

cell: 206.849.1000

DanaManciagli@hotmail.com

Don’t Say These Things to Cancer Patients & Survivors; Do Say…

Hello, and I’ve been asked by many people recently what they should/could say to cancer patients, caregivers, and survivors. So I thought I would re-publish some older blogs.  I’ll combine two articles here with the goal of sharing how you can be helpful and how to avoid unhelpful things!

Dana and Tracy Babies_1961

Dana and Tracy Babies_1961

PART I

For the estimated 1.6 million Americans diagnosed with cancer each year, being out in public can be both a personal triumph and a huge blessing. However, for many cancer patients, conversations with the public carry an element of dread. Nearly everyone who has gone through treatment for a life-threatening illness will tell you that there’s likely to be at least one guest with “foot-in-mouth disease” at every event; one friend who doesn’t quite know how to handle the situation.

As most of you know, I recently lost my identical twin sister, Tracy, to breast cancer, and I continue to fight cancer too. I was recently diagnosed with my 3rd time with breast cancer. Over the years we kept a running list of things you should never say to a cancer patient, sort of like the Letterman Top 10.

As Tracy and I alternately battled the disease together, we learned ways to cope with the off-color, insensitive – and downright strange – comments we encountered at public gatherings. Once we heard a comment, we called each other and announced a new “Letterman’s Top 10 Stupid Things People Say to Cancer Patients”.

We know everyone is touched by cancer but we don’t want to hear other people’s cancer stories. And sorry, I really don’t want to hear that your dog, cat, guinea pig, whatever, had cancer.  My conclusion: if you’re feeling awkward, probably whatever you say will come out awkward.

Dr. Joe Taravella, a psychologist at NYU Langone’s Rusk Rehabilitation, said it’s natural to feel uneasy in the presence of someone you know is very sick. “I think basically what happens is people don’t know what to say in difficult situations, or sad situations, or when they hear not-so-great news,” Taravella said. “People just don’t know what to do with it. Instead of actively listening, they want to give advice and make someone feel better.”

But Tarvella said these social encounters are not the time to offer medical advice, even though it might feel weird not to address the “elephant in the room.” People often are going to be insensitive, whether it’s intentional or not,” he said.

If you’re interacting with someone you know is seriously ill, he says it’s best to let that person take the lead and determine what they’d like to talk about, whether it’s the weather or work or their cancer treatment.

Still unclear about what NOT to say to someone with cancer? Here’s a quick primer.

Do NOT say:

“You’re going to be fine. Everything will be fine.”

“I know how you feel.”

“Oh MY GOD” (followed by moans, crying, drama, pathetic looks, sadness)

“God doesn’t give you more than you can handle.”

“I have a [friend, cousin, grandmother, relative, dog, fish] who survived cancer.”

“My [friend, cousin, grandmother, relative, dog, fish] just died of cancer.”

“Why aren’t you trying this treatment I read about on the Internet [or heard about from a friend of a friend]?”

“What are your odds?”

“Best of luck on your journey!”

“Which breast did you lose?”

“Well, you don’t look sick!”

YES, say this instead:

“Is there anything you need?”

“Is there anything I can do?”

“Would you like to talk about it?”

“It’s so nice to see you!”

“How are you feeling?”

“How is your recovery going?”

“No matter how you feel, we’ll stick with you through this.”

“How are you feeling? I’m here to listen.”

Compliment them (without ending it with “for someone with cancer”

Some other helpful hints:

  • Instead of saying “Please keep me posted” or “Call me after the procedure,” say, “I’ll stay close and ask how you are doing after.”
  • Remember not to share stories of other people either recently diagnosed or experiencing any type of illness. Just not helpful. Period.
  • Avoid the word should, as in: “You should try this…should do that…”
  • Avoid asking about the past. “When was your last check-up; when did it crop up, did you have regular mammograms?” It doesn’t matter, right?
  • Don’t send a book on death and dying or on the afterlife. Instead, ask them if they would like any reading material.
  • Sometimes the best thing to say is nothing at all. Simply sit with that person, listen to them and just be with them.  That quiet comfort can many times be just as welcomed.

Funny Greeting Card

Part II

More on the conversation about “Dos and Don’ts” to help you and your friends be great cancer patient supporters.

FACEBOOK: Facebook “likes” are NOT connecting with people going through tough stuff. Click away, however, please feel free to comment as I read every single comment and they bring me joy. Don’t worry if other people have said the same thing. Just speak from your heart.

Hey, what if we all wrote Zuckerberg and asked him to put a “This Sucks” thumbs down icon right next to the “Like” thumbs up button?  It’s definitely awkward to click “Like” when someone is sharing bad news!

Some of you are still uncomfortable saying anything. I got the following note from a friend who said, “Been following your news on Facebook… praying for you!” Well, those are nice, but why not comment on FB or give me a call, e-mail, or text? That’s where the feel-good stuff begins… for both of us! If cancer makes you so uncomfortable that you can’t send me a, “Hi, how are you?” text, get over it.

MIA: And what if you have been MIA – Missing in Action? It’s just been too hard and now it’s to the point where you really do feel awkward connecting, right?   Here’s a trick that I teach in my networking sessions:   Simply try again and start your communication with TWO WORDS: “I’m sorry.”

Here’s a sample: Dear <name>, I’m sorry I have not connected since hearing of your health news. How are you feeling? Is there anything you need?   I’m always thinking about you and I’ll do a better job staying connected in the future.”

REAL WORLD EXCUSES:

  1. I haven’t called for fear that I would wake or bother you. Just know that our phones will be on silent or off if we’re napping. And we can flip your call into voicemail and listen to it later. And you can e-mail, comment on FB, or comment on my cancer blog.
  2. I just don’t know what to say… so I don’t call. Read the first article of this series as it provides a great script you can steal from!
  3. Other people are saying the same thing so I don’t want to look like a copy-cat. Don’t read other people’s stuff… just write yours! So what if there are other similar ones! It’s the thought, silly!
  4. I’m so busy during the week at work and then mean to call on the weekends, but…   Well… I don’t have much of a response other than a smarty-pants one: ”It’s just not that important…” and there’s no need to share why you can’t or didn’t call.

THE GOOD STUFF:

  1. Great greeting cards (old school paper) that I am keeping.
  2. Care packages of cozy things like lavender, magazines, munchies, socks.
  3. Friends just offering to pop by and not staying too long (maybe they see me fading).

ADDITIONAL SHORT LIST of “things not to say or do:”

  • “Will your beautiful eyebrows fall out, too?”
  • “I’m sorry.” I never know how to reply and end up reassuring people that my cancer is not their fault. Also, it’s the number one way to bring down the vibe.
  • Don’t recommend or send cancer books, special remedies, or recommend we watch a cancer documentary. Yes, I know it’s my choice to keep or toss the idea, but my purpose in life is to be healthy – physically, spiritually, and emotionally.   To me, that’s all positive thinking. I don’t need more information…just peace and happy, healing thoughts.
  • Watch the “should’s,” please. You should do this, gotta try that, this worked for a friend of mine who had cancer. I love my doctors and am under tremendous tender loving care.
  • Don’t come over if you have the slightest sniffle please. Best to re-schedule. If you are healthy, use the Purell bottle hung around my staircase.
  • Don’t gawk! Yes, I see you, total strangers gawking at my naked head. Haven’t you ever seen a scalp before? Bruce Willis has been around since the dinosaurs. So avert your eyes or tell me you loved V for Vendetta.

Just trust your heart and don’t be afraid to stay connected! It will bring joy to me… and you!

With gratitude and hugs,

Dana Manciagli