Special Post by Tami Boehmer

This is a very special post by Tami Boehmer. I am reblogging it here, but I will also add the original link:

http://www.tamiboehmer.com/2015/07/no-expiration-date-a-tribute-to-our-angel-krysti-hughett/

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No expiration date:  A Tribute to our angel, Krysti Hughett

Krysti's

Last night, I lay in bed and couldn’t sleep. I didn’t know that my dear friend, Krysti Hughett, drew her last breath just an hour before. Maybe my body and soul could sense it. Krysti passed away on July 7, after more than 10 years of beating the odds of very aggressive stage IV inflammatory breast cancer. She accomplished such an overwhelming task with her determination, incredible intelligence, and tender love and support she  gave to others. Yet I can feel her presence as if she was still here. And in a way she is.

It is no coincidence I met Krysti while she was helping others. It was about six years ago, and Krysti was leading a Young Survival Coalition (YSC) support conference call for stage IV breast cancer survivors. I was fairly new at the game and nervous about reaching out for help. It was then that Krysti earned the moniker I gave her – “resource queen.” She told me about a magical place called Camp Kesem and suggested my daughter would like to attend. Her own daughter Molly had been going and loved it. I signed Chrissy up for that summer and she and Molly (AKA camp name Mo Mo) became cabin mates and fast friends. We’d meet up with Krysti and her husband Bill at camp and have dinner afterward. It became our tradition.

Image 5Krysti was my mentor and friend. She let me in on so many cancer perks I’d otherwise would have not known about. In addition to Camp Kesem, there was a  wonderful mountain retreat weekend through an organization called Image Reborn. You better believe I took advantage of that and passed it along to my breast cancer friends.

Krysti was also my inspiration and fountain of information for clinical trials. Krysti, I found, knew more about them than many of my doctors.  It extended her life and many others  she so freely advised. I once told her she should get paid for the hours upon hours of consulting she provided for so many people. She shot me down of course. Krysti gave with love; money had nothing to do with it.

Every year we met at Camp Kesem, Krysti would joyously announce that she made it another year to see Molly go to camp. She loved that place, and she loved her girls – Molly, Mindy and Megan. We had a special relationship, but I knew I shared her with so many people who also had a special relationship with this remarkable lady. As she said in her final note, she was loved.

Last Thursday, I went up to Indianapolis with my friend Joules Evans for my scan and blood work for my upcoming clinical trial. Afterwards we stopped in and visited Krysti who was at a nearby hospital. We were among many people who gathered at her bedside. Krysti was struggling to breathe but took off her oxygen mask so she could talk to me. I instinctively stroked her head as she labored to speak. I asked if I was bothering her but she assured me it felt very good. I wanted to give back some of that love and caring she so generously shared with me. We reminisced how we met, and she wanted to know about my clinical trial. Her mind was still sharp as ever and she let me know it sounded promising. I told her I loved her very much and she said she loved me.

There seemed to be little left to be said, but as I turned to head out the door, she had one thing to say to me. “Please let everyone know how you’re doing on your trial.” She wanted me to keep in touch with her family and friends. And I suspect, that she will be listening from above as I give my updates. I know on some deep level that Krysti is watching over me and everyone she has loved. She is just next door, in another dimension, but is still helping everyone. I can feel that right now as I write this.

Image 1Krysti’s legacy lives on, and I’m grateful to play a small role in that. Her story is one of the many featured in my book, Miracle Survivors: Beating the Odds of Incurable Cancer. I know Krysti would want you to read it because her story is so encouraging, just like she was in her life.

I’ll leave you with a Krysti quote from my book:  “At one point, I was NED (No Evidence of Disease). I call it No Expiration Date. When my husband got me a handicapped sticker – which I needed because I had a brain tumor at the time – it said no expiration. That’s what I focus on whenever I’m in my car. I want to stamp that on my forehead.”

I know one thing for sure, there is no expiration for the memories and
legacy Krysti leaves behind. Your body may have expired; but your spirit will forever be with us.

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Tami is an amazing person whose story and phenomenal books are incredibly inspirational. After her five-year, cancer-free anniversary she had a metastatic recurrence of breast cancer in 2008. Tami was shocked when One doctor told her, “You could live two years or 20 years, but you’ll die from breast cancer.”
Image 4Tami explains, “I wanted talk with other cancer survivors who didn’t accept doctors’ predictions–people who beat the odds. I was determined to find out how they did it so I could do it myself.  So I started searching for “miracle survivors” nationwide for my book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.”

Image 6Her new book called  Miracle Survivors: Beating the Odds of Incurable Cancer, was released in November 2014 .You will find all new stories, but Tami again says “it’s the same message: there is hope no matter what the circumstances.

I feel as if I’m fulfilling God’s purpose for me through this work. It has taught me cancer doesn’t have to be a death sentence. Like the people I’ve interviewed, cancer for me was the beginning of a new way of life; one of appreciation, hope, and discovering one’s potential.”

Please learn more about Tami and visit her blog at: http://www.tamiboehmer.com

4 Life Lessons a Doctor Has Learned From Patients

This is from Time Magazine by David Chan. He answers life lessons from cancer patients.

TIME

AnswerbyDavid Chanon Quora.

I’ve taken care of cancer patients for several decades and they’ve taught me something about life.

1. Ajob is just a job. I often get into discussions about life and living with my cancer patients who have a unique outlook because they are face to face with their mortality.

Not one single patient has told me that they wished they had worked more. I’ve taken it to heart and have made it a point to be there for important events for family and friends and to take vacation days.

2. I’m reminded daily to have a big picture view of life and to understand what is a real problem. It’s so easy to be caught up in day to day dramas that we lose sight of what is a real problem.

A real problem is finding a big lump in your neck…

View original post 321 more words

Seeking Volunteers & Advocates!

Get Involved and Make a Difference!

Please visit our main site at http://www.a4bc.org. There are many features and important information.

We are interested in hearing from anyone who wants to volunteer, get involved and/or seeking employment.

Join Us copyPlease consider volunteering your time. We need help managing office issues, assisting in projects, event planning, fundraising, marketing, social media, action campaigns, and with web site content. There are also small projects that you can help with. Just let us know what you are interested in doing, your time constraints and together we will make it happen.

We also have openings for volunteers and/or scholarships who advocates who want to attend the San Antonio Breast Cancer Symposium, YSC, AACR, NBCC, ASCO, Breast Cancer Symposiums, Metastatic Conferences, as well as other lectures and meetings where we will help pay based on your needs and have you represent A4BC. You can write about your experience at these great meetings. Feel free to suggest one that you are interested in and contact us!

We love our volunteers and staff. Tell us a little about yourself and let us know your interests.

For more information email us:

           susan@a4bc.org

You will hear back from us right away. You can also phone us at: 310-923-2339.

If you can’t volunteer and would sill like to help we also appreciate donations. We also have some opportunities for employment that we are open to discussing!

Donate Graphic 6-25-15

Happy Father’s Day 2015

I took some time away from personal blogging. This site is the temporary site for A4BC while the main site will be ready very soon. It’s got so many amazing features that we can’t wait to unveil.  Meanwhile we continue to post news, issues and videos, stories, articles, and calls to action etc. We are fine-tuning our full message and  creating an easy place for advocates to unite, find common ground, and focus on tasks that brings empowerment by elevating the quality of lives by so many people affected by the breast cancer epidemic.

US Capitol Dome Houses of Congress Washington DC
Thank you to everyone that signed over 175  letters to congress and read the information. On 6-19 The full Senate passed the National Defense Act (ADAA) 71-25 without Amendment # 1482! Great work!

On a personal note. I know I left many concerned as I battled (oops watch out for the battle language!) deep, dark depression. It was worse than the first time, when my first love Thomas committed suicide by shooting himself in the head on my 16th birthday.

It was not because of any drama with me.  I have had many years to question why he chose to leave me here alone since I thought we helped each other. That’s why no matter how hard things get I would never take my own life because I would not want to hurt my family and friends that I love and care about who also give me so much love.  At the same time I’ve come to accept that people who kill themselves got lost in a moment that they can’t take back.

yogajpgI have steadily danced toward the light in the land of the living. I see all is well. I ‘m enjoying the process of doing my advocacy work and I am feeling confident again. Perhaps I’ve been so upset about so many deaths and the scary number that 30% of all earlier stage breast cancers will go metastatic.

MBC_Infographic_01_v14

Metastatic Cancer is the one that kills even though one can live with mets on extended treatments that have many side effects. You can read more about MBC seeing a post I wrote 10/13/2013 about Metastatic Breast Cancer Awareness.

Image 3This weekend is the fifth year anniversary of my brother’s death. He died from metastatic tumors that began in his esophagus. five years ago on Father’s Day. My dad died 7 years ago from metastatic tumors that originated in his pancreas. I have spent the weekend thinking about them as well as close friends no longer here from mets, while looking at old photos and realizing how blessed I am they were in my life. No matter what we all have to try to live in the moment with great joy, as we cherish our memories.

I have decided to reblog what I wrote 2 years ago on Father’s Day with some very minor additions since all of what I wrote still pertains to today.

We-Heart-Dad-Fathers-Day-Card Happy Father’s Day dad. I wonder where you are and whether you and my brother still think about legal cases. I know you both are watching over me as I have taken over responsibilities that I never thought would be mine. I am grateful you taught me how to take care of things and both of you always helped me when I needed help. I think a lot of when you were sick dad and the night before your last night I lied to you when I went to the hospital and told you I slept and woke up early at four in the morning to be with you. I really was at the hospital lounge so you thought I slept because I couldn’t Dad photo_NEWsleep knowing you were alone and very sick in the hospital. I am glad you didn’t know you had cancer for the last 6 months of your life and only found out 10 days before you died.

You said you were tired and a little under the weather but you didn’t have to suffer as long by not knowing. I was so glad I came to see you in the hospital and we had some time alone so I could read you the card I made for your surprise birthday party that we couldn’t have. I am glad we all could come together by your bedside and have everyone holding hands. We were full circle with almost all of your children and grandchildren united in our love for you.

Image 1Happy Fathers Day to my older brother! I really miss you. I was so lucky that you were always there for me when I needed you. I know you were very ill but I thank you for helping me get my paperwork done. I also loved getting to work in your legal office and I treasure the days you took me to court with you so I could see all the great work you did. I kept my promise to you and found the most precious thing you asked me to search for. This treasure is bringing so much pleasure to all of our family. You would be beaming with pride!

I know the chemo was tough, but I thank you for letting me go with you, as I understood because I did chemo too. I only wish you didn’t have so many metastatic tumors that grew so fast which could barely be contained.

IMG_0012I still am so surprised you died on Father’s Day, since being a fantastic dad was so important to you and I know how much you loved all of your children and grandchildren. You worked so hard to provide for them and we know how difficult it was for you to have the cruel disease of esophageal cancer take over your body and mind. You stayed with us as long as you could and I hope wherever you are, please know how much we love and miss you. We had such a special bond and a great childhood thanks to our mother and father and their very special relationship.

I miss your humor and way of uniting everyone for all the important times. It’s hard without you, but please know I have kept every promise that we spoke about and you and dad are always with me and the rest of the family in spirit.

Senate Amendment Threatens DOD Breast Cancer Research Program (DOD BCRP)

US Capitol Dome Houses of Congress Washington DC
US Capitol Dome Houses of Congress Washington DC

TAKE ACTION!

The Senate is currently considering the National Defense Authorization Act for Fiscal Year 2016 (HR 1735). Sen. John McCain (R-AZ) has filed an amendment (#1483) that if passed, would severely restrict the types of medical research that could be funded by the Department of Defense and would serve a devastating blow to DOD funding for Breast Cancer Research. Contact your Senators and urge them to oppose McCain amendment #1482.

Sourced through Scoop.it from: advocates-for-breast-cancer.rallycongress.com

To see the bill H.R. 1735 go to: https://www.congress.gov/bill/114th-congress/house-bill/1735/text

To see HR 1483 go to: https://www.congress.gov/amendment/114th-congress/senate-amendment/1463/text

TAKE ACTION: clickhere  http://advocates-for-breast-cancer.rallycongress.com/18000/senate-amendment-threatens-dod-breast-cancer-research-program-dod/

NAN_header2aThis is a pre-written letter that you can send to let your Senators know how important it is that we don’t lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress.

See on Scoop.itBreast Cancer News

DOD BCRP in Jeopardy TODAY– Ask Senators to Oppose Amendment #1482

NAN_header2a**URGENT**: Call your Senators RIGHT NOW to save the Department of Defense ‪#‎BreastCancer‬ Research Program (DOD BCRP).
Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor TODAY which would do irreparable damage to the Department of Defense Breast Cancer Research Program.

DODPlease call your Senators NOW and give them the following message:
1. Please vote against the McCain Amendment #1482 to the NDAA
2. This amendment would do irreparable damage to the DOD BCRP – one of the most efficient, innovative and successful government programs.
3. As a breast cancer survivor/activist, the DOD BCRP is incredibly important to me and has produced results which have directly benefited survivors like me, including those who have served and currently serve our country in the armed forces.

Find your Senators here: http://www.senate.gov/senators/contact/

OR use this Link: http://www.capwiz.com/aacr/dbq/officials/
Learn more about the DOD BCRP: http://www.breastcancerdeadline2020.org/…/priority-2-150-mi…

To see the bill H.R. 1735 go to: https://www.congress.gov/bill/114th-congress/house-bill/1735/text

To see Amendment 1483 go to: https://www.congress.gov/amendment/114th-congress/senate-amendment/1463/text

TAKE ACTION: clickhere  http://advocates-for-breast-cancer.rallycongress.com/18000/senate-amendment-threatens-dod-breast-cancer-research-program-dod/

This is a pre-written letter that you can send to let your Senators know how important it is that we don’t lose funding for the very successful Breast Cancer Research Program. funded by the Department of Defense. It only takes a minute to put your name and address in and your email will be sent to Congress.

Local mom’s message about breast cancer goes viral

This is an article taken from “Terri Gruca, KVUE 9:08 p.m. CDT June 5, 2015.site-masthead-logo@2x
Metastatic breast cancer has no cure. Every year 40,000 people die because of it, but it is rarely talked about. A Cedar Park mom decided to change that. Her video is now being shared around the world”No one wants to hear they have cancer, much less that it’s terminal. A Cedar Park mom has turned that diagnosis into her mission. And her message is spreading around the world.

What started as a simple gesture to make people aware is turning into a worldwide lesson.

Holley Kitchen was diagnosed with stage 3 breast cancer at age 39. After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.

MBC_Infographic_01_v14

“I think it resonates with people because it’s honest. It’s what people don’t want to say what people don’t want to hear,” she said.

Every year 40,000 people die every year with metastatic breast cancer, and there is no cure.

“It’s my life and I’m going to make the best of it,” she said.

Like many people Holley was totally unaware. Her video had been viewed millions of times in 24 hours.”

Sourced through Scoop.it from: www.kvue.com

To see this powerful video that tells the truth about this disease go to: https://www.youtube.com/watch?v=QDQ0FjP7J-c&feature=youtu.be&a=

You can also go to Hollly’s Facebook page at: https://www.facebook.com/HolleyKitchenCancerLifer?fref=ts

Go here to view Holley’s video on Facebook