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

The Battle We Didn’t Choose – My Wife’s Fight with Breast Cancer

Hi Everyone! There’s a beautiful love story between Angelo Merendino and his wife Jen. Angelo is an extremely talented photographer. He was also an incredible husband to his wife Jen who got metastatic breast cancer. He photographed her as she lived with this disease all the while loving and caring for her in such a special way. He has a web site that you will find fascinating at: http://mywifesfightwithbreastcancer.com/, where you can read and find out much more about this beautiful story as well as see some incredible photography.

Angelo Merendino’s Book is Now Available for Sale!

The Battle We Didn’t Choose – My Wife’s Fight with Breast Cancer

The Battle We Didn't Choose - my wife's fight with breast cancer

Angelo Merendino writes:

I am proud to announce that our story is now available in digital book format! Aside from taking care of Jennifer, putting this book together has been the biggest challenge of my life. More than a story about loss, this is a story about love and life. Above all else I have realized that this book is a love letter from me to Jen.

The book includes many photographs that have not been shown anywhere, as well as a Resources section, audio narrations and videos. It is available in English, Italian, Spanish, French, German and Russian. (Note that if you are hoping to view the book on an iPad, be aware that audio and visual elements will not function. I am currently waiting for approval from Apple on the full-featured, iPad-specific eBook. Please check my website again soon for details on this release.)

Fifty percent of the net profits of all book sales will be donated to The Love You Share*, a non-profit organization I am starting in honor of Jennifer. The mission of The Love You Share is to provide financial assistance to cancer patients in need while they are receiving treatment for cancer. The hope is that by sending a gift card from a local grocery delivery service and reimbursing patients for transportation costs to and from hospital and doctor appointments, The Love You Share will be able to make life easier, even if only for a short time, for someone who is fighting for her life.

Available in English, Italian, Spanish, French, German and Russian.

*The Love You Share has applied to the Internal Revenue Service for 501(c)(3) tax-exempt status.  Donations to The Love You Share are not currently tax-deductible while its application is pending. If The Love You Share receives tax-exempt status, donations received while its application was pending may be treated as tax-deductible contributions retroactive to the date of its formation.

To Buy this Great Book

clickhere

 

Donna Peach – Danced in to the Light

donnaLast night , Donna Peach danced in to the light. It is her beautifully poetic expression for those that have died. Yesterday was Donna’s time. Every night I check my email and look for Donna Peach’s blog. She had stage IV metastatic breast cancer and I met her through her blog when I started blogging around ten months ago. Donna was a choreographer and a dancer and because of all my ballet and modern dance training, we became social media #fearless friends immediately. Her incredibly wonderful husband Marvin aka Don also would write on her blog to let us know how she was when she couldn’t.

Last night I was visiting my sister for a holiday and it’s the first night I did not check Donna’s blog. Of course Marvin was there to tell us what happened and to those who are interested in Donna’s blog please click here: at her site: http://donnapeach.com/. Unfortunately she was in the hospital and although she had been in and out of the hospital during these past 10 months, I had hoped she would get better and be able to go home with her incredible husband.

This is the part of breast cancer that I hate. When someone is diagnosed with Stage IV, their disease is not curable but there are various regimens of chemotherapy that can extend life. This is so unfair. The trick is trying to keep quality of life while extending it with regimens that have terrible side effects but are able to extend one’s lifetime.

My focus today is about the beautiful living Donna who participated in so many events with breast cancer social media including her web site and a site where others with cancer can express themselves through poetry and words. To see this great site go to: http://cancerpoet.com/. She always joined our meetings on Twitter with #BCSM (the breast cancer social media community) and I was always so happy to see that she was part of this incredible group.

I was supposed to meet her when the Los Angeles group of the #BCSM community met on a Saturday in West Hollywood, but unfortunately my dog Shelby had a terrible urinary tract infection and her urine was bloody. Leave it to Donna when I wrote her a long email explaining how sorry I was I missed the meeting, she just said not to worry I would see her the next meeting. Although deep down I knew time was getting limited, we all have to live in the moment and make the best of it.

I am frustrated that we have not found a way to help those with metastatic cancer. I have watched too many dance in to the light this way. But for today I just want to remember Donna and the beautiful soul that she was.

I know that sometimes this blog is hard for some. Who wants to hear about death and breast cancer? Yet this is a harsh reality of the disease. When I was first diagnosed I didn’t want to hear about anyone dying from the disease. All we want to hear is that we can be cured and we do what the doctors tell us and that’s the end of it.

Unfortunately when someone is diagnosed with metastatic cancer whether breast, esophageal, lung, pancreatic, colon, etc., many people don’t understand that no matter how much someone tries to grin and bear treatment there is no hope of a cure. There is only a chance of extending life through various chemo regimens depending upon one’s pathology.

I am not trying to be grim. I just want everyone to understand how special Donna was as well as so many I have watched with metastatic cancer that tried as hard as they could to stay with us as long as they could. I hope that through my advocacy this will change. I hope we can find a vaccine to end breast cancer while we learn how to reverse metastatic cancer. Only then will I believe that all of my time and energy was worth it – for truly this is a goal worth achieving.

Meanwhile, dear sweet Donna I hope your beautiful soul is at peace and you can feel all the love that so many of us are sending you.

Valerie Harper Inspires

I am so touched by Valerie Harper. As I am sure my readers are aware , not only is Valerie an incredibly accomplished actress, but her warmth and grace has been so touching during this terrible diagnosis of leptomeningeal carcinomatosis, a rare condition that happens when cancer cells invade into the fluid-filled membrane that surrounds the brain. She has been told by her doctors she will likely be able to survive about three months.

I had the good fortune to meet Valerie at a hair salon that I used to go to. She was always down to earth and always friendly while at the salon to others. When I thought her appointment was ahead of mine she told me it was not and that I was to take my turn.

valerie-harper-00-300She has bravely gone on television, visiting The Today Show, The Doctors, The Talk, Good Morning America , and spoken with People Magazine. Each interview had her glowing with life accepting her diagnosis when you know she is in shock. It is so wonderful to see such a loving relationship with her husband.

She is also a lung cancer survivor. She never smoked. So many lung cancer survivor’s never  smoked or quit a very long time before their diagnosis. I think that lung cancer is the cruelest of all cancers because so many people assume it’s only from smoking and I know many people who have had or are living with lung cancer and they are all non smokers. It’s a disease that deserves no blame. There is a campaign around lung cancer where we attach the words, “no stigma”. Meanwhile Valerie caught the lung cancer early and survived it.

Now she faces such a difficult diagnosis. We see her looking healthy and beautiful and as so many with metastatic cancer do. People are surprised because they not look as though they are very ill especially at the beginning of their diagnosis. Different cancers at different metastatic stages are like that and each one has a different set of statistics for how much time a patient has a chance of living. With my close friend Li when she was metastatic we often talked about living through the dying and making the most of the time we have. Like Valerie we wanted quality of life, not quantity.

There is a wonderful article by Donna Kaufman in I Village that talks about the 10 most inspiring things we’ve learned from Valerie Harper that I am going to copy and paste here. Valerie’s courage and willingness to share this private part of her life with all of us teaching us so much is just beautiful.

The 10 Most Inspiring Things We’ve Learned from Valerie Harper

1. Don’t blame yourself for tragedy. “If you die, you’re not a failure,” Harper said on Today. ‘You’re just somebody who had cancer. And that’s the outcome.”

2. Live in this moment, right now. “I’m not dying until I do,” Harper told Today. “I have an intention to live each moment fully.”

3. Remember that death is part of life. “I really want Americans, all of us, to be less afraid of death,” Harper said on The Doctors. “Know that it’s a passage, but don’t go to the funeral before the funeral. While you’re living, live.”

4. Let yourself be sad — but stay hopeful. “I don’t mean this to be Pollyanna! I allow myself the grief,” Harper told Today‘s Savannah Guthrie, when asked if she ever felt sad. “What I’m saying is keep your consciousness, your thoughts open to infinite possibility and keep yourself open to miracles.”

5. Don’t give in to despair when there’s more pasta to eat. When Harper first heard her diagnosis, she said on The Doctors, “I broke down. I absolutely sobbed. I let myself do it. Then I said, ‘Okay, you’ve been the drama queen. Now get over it and make the pasta.'”

6. Deal with your battles in the way that makes sense to you. When one of the Doctors asked Harper why she was spending her final days on a press tour, she responded, “Dr. Travis, this is not for everyone. This is my way of dealing with it.”

7. Don’t live in denial. “I’m trouble,” Harper admitted in a video message for People, “but when the smoke clears, I’ll be standing. Until I’m not. And I’m ready for that, too.”

8. Don’t forget to live just because you’re dying. “‘Incurable’ is a tough word. A lot of people were calling — ‘Can I come by the house?’ ‘Are you in a wheel chair?’ — because they hear it as this death sentence,” Harper said on Today. “Which it may be. But I’m not dying until I do. I promise I won’t.”

9. Never be afraid of what’s next. “I don’t know what’s ahead, but I’m ready for it. Onward!” Harper told fans in her People message. “I love you. And know that I’m okay. I am okay on this venture.”

10. Keep your loved ones close. Harper says she’ll be spending her last months with her husband and daughter while she undergoes treatments to try to slow the progress of her disease. “My doctor said it’s incurable — so far,” Harper said on GMA. “And I love that possibility. We all need to live in infinite possibility.”

Valerie speaks of how important it is not to blames oneself for a cancer diagnosis. She talks about living in the moment and not focusing on the dying. She says to deal with your battles in your way. For her it was going on Television and speaking to her fans. Most important she speaks of keeping family close. Even though she knows that her disease is “incurable”, she still lives in a world of “infinite possibility.”

Her message is one of so much hope for so many that have faced incredible obstacles in their lives. I just love everything about Valerie!

Happy New Year – Flying Home

I am sitting on a plane with wifi and reading other breast cancer blogs which I did during a wonderful holiday with my family. They have me thinking a lot. My need to write today has to do with the fact that as I take this flight home I am flooded with memories and feelings of my past flights going back to California when I was living closer to my family on the southeast coast. I flew many times on this flight to California running to my friends especially my very close friend Li who went through chemo with me and had stage IV MBC , while on the east coast my brother was going through stage IV esophageal cancer. His health climbed faster downhill then my friend because of the stage at which he discovered his cancer.

I have been so happy working away at being a patient advocate and doing everything I can to make a difference and I am reading different things and all I can say is this may sound crazy but for me it was so much easier being the patient in jeopardy going through my primary chemo at an earlier stage than having to watch my brother and best friend go down their line of chemo drugs and disease progression. I ask myself over and over why it wasn’t me and why it was them as I stood by and they let me in fearlessly clinging to the joy they could find in life and wanting to have as much quality of time in life with them.

After I had breast cancer twice in California I decided to move closer to be with my family, because I just was drained from all the constant treatment and I missed my family. Little did I know seven months later my father would find out that he had pancreatic cancer and luckily I had moved close to the family and was able to be with him, since he died 10 days from finding out his diagnosis. I think in some ways he was better off not knowing that he was so sick until the end.

Being with my brother and my best friend as they went down their line of drugs was just as special, yet at the same time I have so much guilt that it wasn’t me. I luckily rented a room in California so I could fly back and forth and keep my medical Doctors in California.

gene-technology-7830After my brother died I moved back to California as everything shifted and luckily I had been at the right place …at the right time…while my friend got close to the end. I am on another flight knowing this cycle will not stop. A very close friend has Stage III – IV lung cancer and is such an inspiration. I have a few more friends who are going through Stage IV breast cancer. I have stepped in cancerland and there is no turning back. I am not Stage IV and for that I should be grateful and (don’t get me wrong) I am but it’s hitting me as I return to my home. I am saddened by the sheer loss of things around me.

At the same time, I refuse to keep complaining and continue forward with all of my advocacy work to make a difference…It’s just that I am in a moment where I feel like that rat on the ferris wheel as more people get bad news. Yet my father, my brother and my best friend all gracefully lived in the moment as much as they could to hold on to joyous days of life while they knew they were going to be taken away from their disease. I asked my brother if he was scared and he said he wasn’t….Life…death…he just accepted to his fate and made the most of what he had. I asked my best friend and she said she wasn’t scared either. To her she was looking forward to seeing people when she died.

With these things happening around me I can’t help asking myself why them? At the same time I refuse to push myself in to the dreaded corner of anger and resentment at fate and get a grip knowing I must be smart enough to make the most of whatever time I have. In the back of my mind one of the bloggers was angry because they are stage IV and they were sick of hearing they should live in the moment. I think the reason she was angry is the word “SHOULD”. Instead we all COULD try to live in the moment.  If we don’t and we can’t make the most of out time while we are here, then why bother fighting to live. This is it. Take it or leave it. I have to try to make the most of my moments no matter how little control I have over what Stage of disease or peril I or my closest friends are in. At the same time, I am not trying to pat myself on the back as much as be grateful I have the ability to make a difference and while I believe I have NED (no evidence of disease) make the best of it. My father made the best of his life and had no idea how sick he was. I think he was better off not knowing until the end.

It’s not the analogy of “I could get hit by a bus” at any time before my friends who are in Stage IV cancerland know the bus is coming as much as why waste time getting so upset that I bring a harsher depression on myself as I have enough of that from all the hormones that have been stripped from me to theoretically keep me NED. The truth of the matter is I can wallow in anger and resentment or forge ahead with optimism and lack of fear for what is happening inside my body and live my best life. That is truly the only way I can make sense of all that is surrounding me.

Honestly I am proud of how I talked myself out of wallowing in self pity as I return to California after a wonderful holiday with my family. I am also thrilled that I have this wonderful machine and social media to help make the most of this flight as I plan to return to all the enormous tasks I have facing me and get back to my routine while I know there is so much work ahead of me to make a difference in Breast Cancer Land. And whether you are healthy, having health issues, in cancerland, affected by cancerland or just reading this because you care about me and what I have to say…thank you for letting me use this platform to express what is happening around me.

Meanwhile it’s a new year. Make the most of it, love yourself and try to enjoy everything around you no matter where your body or mind is at. This also includes what your loved ones are going through. That is the only way all of us can live our best lives and appreciate so much of what we have.

Celebrating the Extra Ordinary: The Good and the Bad

I took this video of Shelby to continue to show the joy she brings me.  I was going to post it yesterday when I discovered she had ear infections in both ears even though she had just been to the vet a few days before.

The right ear is also deeply infected and requires ear drops that she does not like when I put them in. They are analyzing the problem from sections of the infections.  She is home with me resting now.

They shaved her hair off of her ear while she was sedated, and her vet said that the hair will grow back and cover the missing part of her ear. I also took the photo of her resting on the bed with her bandage on.

I am sad for Shelby and I keep thinking how upset Li would be. At least I am comforted knowing Li would not blame me for what happened to Shelby. My friend was so great about unconditionally excepting who I am. That is what true friendship and having a great family is. I am lucky i have friends and family that I love unconditionally and that unconditionally love me.

Shelby is so pretty when she sleeps. She is quiet and peaceful and she has been such a trooper through all of this. For this I am so grateful. Shelby sleeps with optimism and brings light in to my world.

Thanks again to Marie’s award-winning blog  Journeying Beyond Breast Cancer “Celebrating the Ordinary” challenge was really inspiring and I thoroughly enjoyed so many other blogs out there that participated.

Celebrating the Extra-Ordinary: Her name is Shelby

In the blog, “Journeying beyond Breast Cancer” Marie challenged other bloggers to celebrate the ordinary by taking a photo of something every day that makes them feel grateful.  When my friend Li Bailey died on January 6, 2012 of Metastatic Breast Cancer (see earlier blog My Fearless Friend Li Bailey) , she left me with a gift that she asked me to take care of when she found out she was going to die from Breast Cancer.  It was her beautiful dog Shelby. Li knew that I adored Shelby from the first day she arrived at her home.

When Li got Shelby, Li had completed her primary chemo and moved to a bigger apartment so she could have a puppy. Shelby arrived around Christmas in 2005 and when I visited Li, I loved playing with Shelby and she is just the sweetest dog that anyone could ever ask for. Shelby brought so much joy in to Li’s life and continues to bring me joy every day.

The day Li died, I took Shelby and all of her things to my home. We spent the day together as she got used to her new home. Shelby acted as though this was a new fun adventure. I am so grateful to have her in my life and she continues to keep my friend alive in my mind by just being herself. I love Shelby so much! She is a fun, happy, adorable dog with the most beautiful eyes.

Earlier today I was feeling sad because I missed my friend. I walked with Shelby like I do everyday and when we got home I felt so much better. She was sitting on the floor looking so pretty that I took her picture and realized just how grateful I am for having had Li in my life and having been blessed with her incredible gift of Shelby.

I also want to thank Marie for giving all of us bloggers a great idea to post about.