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

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.

Krysti 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.

Krysti’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.”
Tami 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.”

Her 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

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.

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.

I 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.

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.

This 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.

 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 sleep 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.

Happy 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.

I 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.

Metastatic Breast Cancer Awareness Day – Every Day and every October 13

We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Especially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

Almost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

“METavivor on the Move” – I am on the team

I have written about my passion (see: While Flying – Frustration surrounds Me ) for doing  everything I can to advocate for Metastatic Breast Cancer (MBC). 6-10% of breast cancer patients are initially diagnosed at Stage IV (MBC). 30% of all breast cancer patients initially diagnosed with early stage breast cancer will eventually metastasize (or have what some of us call mets). 

In the US alone 1 woman dies every 14 minutes of MBC. I have many friends now who have MBC. Metavivor is an organization that I have great respect for. Like Advocates 4 Breast Cancer they are an all-volunteer, patient-founded organization. They are devoted to raising awareness about metastatic breast cancer, funding vital MBC research and they promote the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research.

Right now only 2% of all funds for breast cancer organizations go to MBC research. This has to change. As the Executive Director of Advocates 4 Breast Cancer (A4BC), I am proud that our organization is listening to Metavivor. We are devoting 30% of our funds each year to MBC research. We hope that other non-profits will follow our example and recognize how important it is for all breast cancer organizations to fund MBC.

As an update to A4BC, we are in the process of getting our official site up and we are working around the clock to have it done. We are now on Facebook.  Thank you everyone for liking the page and if you haven’t seen it, please have a look and “like” the page to stay updated. Please click on: https://www.facebook.com/advocates4breastcancer.

I am haunted by the death of my very good friend Li Bailey, and my other friends who have died from MBC. Unfortunately this list keeps growing. I also hate that many of my friends have recently become part of the 30% joining my other friends who have MBC. This disease robs so many of so much. We must have MBC research that continues to bring about “quality of life” medications that will extend everyone’s lives for years (not just weeks or months). Forty thousand women in the US alone will die from MBC this year.

Metavivor is also looking for volunteers. They have a fantastic campaign called “Metavivor on the Move.”, inviting people to join the volunteer team. They are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada. Although I have a very full plate, I am part of the volunteer team doing what I can to help with Metavivor.  If you would like to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

To learn more about MBC please check out Nancy’s Point at: http://nancyspoint.com/mets/

To learn more about METAvivor, please visit their website here: www.metavivor.org.

 

An Incredibly Moving Video – The Light that Shines

Here is a wonderfully moving video that speaks for itself. Go to: http://www.youcantbeserious.com.au/blog/the-light-that-shines/ and click on the video. Enjoy!

The Public needs to know the truth about Breast Cancer

I was preparing my breast cancer newspaper at www.scoop.it/t/breasr-cancer-news, and I came across this news story below about a Komen function to raise breast cancer awareness in Bristol, Tennessee and Bristol, Virginia. I started thinking, “do I really want to put this in my newspaper?’ Don’t you think by now the public is AWARE that there is a disease called breast cancer? What’s wrong with this picture?

The article makes no mention of how many women are living with MBC (metastatic breast cancer). It mentions that there are 40,000 deaths in the USA every year but goes on to say, “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.” The problem is the public knows about the pink ribbon and breast cancer, but they don’t know that in the USA 1 woman dies of breast cancer every 14 minutes. Painting the town pink does nothing to stop theses deaths from MBC. These are not just statistics. These are daughters, mothers, friends, wives, best friends and I could go on and on.

The public needs to know that breast cancer is not just another pretty pink disease. We need to find a vaccine and end metastatic breast cancer once and for all. Approximately 30% of women (and some men) who get breast cancer will die of breast cancer. In 1991, 119 women in the US died a day of breast cancer. It’s 21 years later and 109 women in the US die of breast cancer every day. When it comes to death rates we haven’t made much progress.

The article mentions Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office stating,” the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.” I thought the Susan G. Komen organization was going to stop misleading the public about early detection.

In another article calling Susan G. Komen in to question, Dr. Lisa M. Schwartz and Dr. Steve Woloshin, both professors of medicine at the Geisel School of Medicine at Dartmouth in Hanover, N.H., wrote. “Women need much more than marketing slogans about screening: they need – and deserve – the facts,” concluded the authors. “The Komen advertisement campaigns fail to provide the facts. This kind of behavior is not very charitable.”

The public doesn’t know about all the women living with metastatic breast cancer (MBC) and what they go through until they die from breast cancer. Thankfully, I know some incredibly fearless friends that have MBC and are trying to live their lives while they have a chronic disease, as they go through a variety of treatment regimens, hoping that a regimen will hold the metastatic sites at bay instead of finding out the disease has progressed. Its agony to wait for test results to know if a regimen is working, while trying to keep a positive outlook.

I am upset because the women with METS from breast cancer have been lost in this sea of pink. We also don’t know why some breast cancers metastasize and some don’t. Sometimes the pathology can make things more difficult as well as if someone has the BRCA1 or BRCA2 gene mutation, but other times it just happens that some cells hide away during primary treatment or the breast cancer is found when it has already metastasized. These cancerous cells usually travel to the brain, bones, liver or lungs.

There are so many other bloggers, breast cancer patients, and breast cancer advocates that understand the way the press and the organization of Susan G. Komen has missed the facts and figures as well as the lack of fairness to those women and men who have MBC.

Laura Wells who has MBC expressed the problem so well in her blog “Beyond Pink” by writing, “I understand the need for this cheerfulness, and these stories of survivorship.  I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure. But, I am beyond that definition of hope.  My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink.  It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up.  And, black, the color of death, for surely, one day, my fight will end. And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills.  And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.”

The public needs to know that breast cancer treatment is extremely difficult. Breast cancer patients do not get lovely new boobies when they must have a mastectomy. When women lose their breast tissue their breasts are literally sliced open to make sure they get as much tissue as possible and there are big scars. When I went through my primary treatment for breast cancer, I thought I would just go through treatment and return to my normal life. I know so many other fearless friends that had the same experience as me. Our lives were forever changed. As Susan Love has said many times “Breast cancer treatment involves a slash and burn mentality”. We need to make some real progress in ending these horrible deaths and ending the disease itself.  The National Breast Cancer Coalition (NBCC)  has set a deadline to end breast cancer in 2020. For more information on this deadline and what the NBCC is doing go to http://www.breastcancerdeadline2020.org.

We have to do more to educate the public about breast cancer and make a change in how MBC is understood. For starters we need to change the conversation about those going through primary and metastatic breast cancer treatment. There are so many things that need improvement to those with MBC and there is a lot of work ahead. You can sign the petition telling the  Susan G. Komen for the Cure organization to increase funds for scientific research and increase transparency. You can also sign the petition from the NBCC at http://www.breastcancerdeadline2020.org/homepage.html, to whoever is elected the president that would create a resolution to end breast cancer in 2020.

I also think that it is important that we don’t start having “pink wars” just because the public has been misled about breast cancer.  We can all learn from the mistakes of the past and try to move ahead, especially as we enter the “breast awareness month of October.” Our goal is to have the press and the public see the truth about breast cancer, so that we truly can make progress and end this disease once and for all. If we continue to do business as usual we will end up with 800,00 deaths a year worldwide in 2030.

Also, all the survivors that don’t have METS like myself don’t know if we will be part of the 30% that will end up with MBC and have to die because we have only made drugs that can add time to survival before our death. I have attended many symposiums with famous oncologists presenting abstracts about chemo drugs that extend life for a short period of time. For example the drug halaven for MBC patients has a progression free survival (PFS) rate of 2 3/8 months. When these types of chemotherapy trials are presented at famous oncology conferences in reference to the PFS of the drug everyone claps, but a few more months of life is not much progress. On top of that the cost and research as well as trials involved to get FDA approval for these drugs are very expensive and a long process. At the same time, when my fearless friend Li Bailey was dying and she went on halaven I was grateful for the extra 2 3/8 months of her life. Yet I know, we need to find a way to stop METS before it starts and reverse METS when it moves to other parts of the body.

We owe the people going through treatment, especially those with MBC to do everything in our power to help give them quality of life. I remember when my fearless friend Li Bailey’s disease was clearly progressing rapidly, we decided we would try to enjoy her quality of life, not quantity. We can keep feeling angry, but it is better to hope that we will end breast cancer in 2020. As we work towards these goals while the public sees the truth about breast cancer, we can find comfort in the fact that all of our hard work can make a difference, and together we can finally see an end to this horrible disease.

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Bristol‘s month-long observation of fight against breast cancer

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ANDRE TEAGUE/BRISTOL HERALD COURIER – Curt Rose, president of the board for the Tri-Cities Susan G. Komen For The Cure, speaks Thursday morning at the Chamber of Commerce about the upcoming Real Women Pick Pink event in Bristol.

ANDRE TEAGUE/BRISTOL HERALD COURIER – Sue Lindenbusch, vice president of Oncology for Wellmont Health System, talks Thursday about promoting breast cancer awareness and education during the month of October in historic downtown Bristol.

By: Roger Brown | Bristol Herald Courier
Published: September 14, 2012
Updated: September 14, 2012 – 9:39 AM

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BRISTOL –Bright pink and hot music will be out in full force across the Twin City in October to mark Breast Cancer Awareness Month, local officials announced Thursday.“Whenever you get to the month of October, you [instantly] think of pink and Breast Cancer Month,” Sue Lindenbusch, Wellmont Health System’s vice president of oncology, said during a Bristol Chamber of Commerce news conference to promote “Real Women Pick Pink” – the city’s month-long observation of the fight against breast cancer.“We all have the same passion about getting the word out about breast cancer,” Lindenbusch said. “The more we can make this fight [public], the more it helps our work to make this community more aware and healthy.”Nearly 40,000 American women died of breast cancer last year, according to http://www.breastcancer.org, which also notes that breast cancer and skin cancer are the most commonly diagnosed cancers among females in the U.S. Through 2011, there were more than 2.6 million breast cancer survivors in this country.A major component of the observation will involve Bristol’s iconic welcome sign downtown. More than 1,000 pink light bulbs will be inserted over a three-day period – beginning Sept. 27 – and the transformed sign will be illuminated during an Oct. 1 evening ceremony at the Bristol Train Station. The lights will stay in place throughout October.“It’s going to serve as a beacon to raise awareness about breast cancer,” said Matt Bolas, executive director of the Bristol Convention & Visitors Bureau, regarding plans to give the sign a pink hue.Also, several national and local female musicians will take part in an Oct. 20 “Real Women Pick Pink” concert festival at various indoor and outdoor venues on State Street.Curt Rose, board president for Susan G. Komen for the Cure’s Tri-Cities office, said the event could play an invaluable role in helping raise breast cancer awareness and the value of early detection among young women.“It’s going to allow us to reach a whole new segment of people who might not otherwise [think about] breast cancer,” Rose said.rbrown@bristolnews.com
(276) 645-2512

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