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

Happy Holidays! – A Special Memory from Christmas Day 2011- Remembering Li Bailey

Image 4Last year was a very special Christmas Day. My best friend Li had metastatic breast cancer (MBC) and she had started hospice in her home. She had an extremely precious caregiver named Nora who I am still in touch with because she became part of our family. Li didn’t have any siblings and her parents were both deceased, so her best friends were her family, and I was so lucky to be one of them. Li’s disease was progressing and she was having difficulty walking so she needed the help of a walker.

Li wanted to make a special day for Christmas and invited Kathy, Joy and myself to come over to her apartment to celebrate the day. Li was so excited about getting everything ready. We all brought food over and the day before Nora helped her get the table set just the way Li wanted it so that we could all sit together for this great feast.

This was one of Li’s happiest days while being sick. She enjoyed working with Nora so everything was in the right place and LI was meticulous about the preparations. I got to Li’s apartment first and helped her out of bed, brushed her teeth, got her dressed, etc. Then when Kathy and Joy came over we started having our great meal. What meant so much was how we all knew it was our last Christmas with Li and she knew it too, but we were all in the moment.

IMG_3171.JPG - Version 2We took breaks in between the meal  because Li wanted to go through some of her things and share them with us.  We also went through some of her modeling photos when she was 16. She was a sensational model and she was even in Vogue. Joy brought back some “limoncello apéritif” from Italy and we had a set of four little glasses that we each toasted with. Li even had a sip although I know she couldn’t drink all of the drink. I now have those beautiful apéritif glasses and I treasure them with a great memory of that day.

I have to give Li credit. Even though each time she lost more mobility she accepted what was happening and bravely entered each new phase as she got to the end. The hospital bed was the hardest but she was terribly uncomfortable with her bloated tummy from the liver metastases and she realized that the movable bed really was the best thing. When she got in it she was so much more comfortable.

Because Christmas is coming again this year my mind is remembering a lot about the end of last year. I was supposed to go to my Mom’s for the holidays but because Li was starting hospice I just couldn’t leave her and I have the best mom in the world. She told me not to come home and stay with my friend who needed me.

That was another great thing about Li. She made me feel so good because I could help her. Helping others with breast cancer, early stage and any type of metastatic cancer helps me cope and feel empowered since I could do nothing to save anyone’s life, especially Li’s from cancer. One of the biggest reasons I am a patient advocate is so I can help others. That’s why I started my non-profit Advocates 4 Breast Cancer, so I can make a difference.

I am in the process of getting my site up and because it is so time-consuming, I am going to try to blog less so I can get the company up and running. It’s so great to have this blog and I find myself blogging when I am bursting with energy to write about something. This day with Li, Joy and Kathy was so special to us. Our friend was such a gift. Now I must make sure that my voice and work advocating helps others. While I am excited about the National Breast Cancer Coalition’s deadline 2020 to end breast cancer, there is so much else that needs to be done as an advocate and I can’t wait to get this important work moving. I owe it to all of my fearless friends out there and I promise to do my best to make a difference.happy_holidays_slider_900x300

I hope all of you have a lovely holiday and here’s to a wonderful 2013. I started this blog about six months ago, and I thank you so much for reading my posts, checking my daily online breast cancer newspaper, and having faith in me. I hope I can live up to your expectations.

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.

My Fearless Friend Li Bailey

I first met Li in February 2005 at a conference table with a great breast cancer support group. The group was for early stage breast cancer and everyone in the group that day were all in the middle of chemotherapy while I was about to start my first round of adriamiacin and cytoxin. I had to do chemo because they found the cancer in my first lymph node. I had no problem undergoing a surgical lumpectomy, sentinel node biopsy, or axillary dissection, but when I heard I needed to do chemotherapy and I would lose my hair, I knew I needed some help.

It was ironic that in November my hair stylist of several years chopped my hair very short when I asked her for a little trim. I was furious that my long hair was gone, so I went and got hair extensions until my hair grew longer again. I told the group I had extensions and Li picked up immediately that I was not going to do well losing my hair.

IMG_3127_2The next time I saw Li was in my oncologist’s office when I was about to leave.  As I looked up from my papers she came out into the waiting room. I saw her and immediately gave her a huge hug and realized she went to the same office with a different oncologist.

Since she was alone I asked her how she was getting home and she said she was going to call a cab. Li lived in Santa Monica near the oncology office and managed to get around by bus, friend’s rides or taxis. I offered her a ride in my car parked far away. As we walked she was getting out of breath, because her red cells were very low from the chemo, but I kept telling her we were close to the car.

We started calling each other and found that we had a lot in common. I had a graphics arts background with a degree in architecture and she had worked as a designer at the Smithsonian. She left her job taking a very early pension and after seeing the Pentagon in flames from her apartment window on 911. She moved back to California where she and her ex-husband had lived before she went to DC.

The day my hair fell out we spent the day on the phone talking for hours. She was so supportive since she knew this was something I was not comfortable with at all. From that day forward we spoke with each other practically every day, and it was so comforting for both of us going through chemo together. Her regimen was adriamyacin every 3 weeks for 6 rounds totaling 18 weeks of treatment. Mine was “dose-dense” adriamyacin and cytoxin every two weeks for four weeks, followed with taxol every two weeks for four weeks totaling 16 weeks of chemo.

We talked about breast cancer and chemobrain plus our lives, side effects, research and managing to get through treatment, and we thought we knew a lot about breast cancer. We went out for meals together and one of our favorite places to eat was a Chinese restaurant run by a family we called “Lucy’s”, since Lucy always served us while her mother was in the kitchen. We both had terrible stomach issues during chemo. I had trouble keeping any food down and her food just seemed to run out of her little body.

We became extremely close because we were experiencing the same “trauma” at the same time. We would lose ourselves in conversations and never missed a Saturday to get together. We could both talk without our wigs on and I laughed when she made fun of me for holding on to whatever strands of hair would stay on my head. Truthfully, I did look a little  bizarre with 20 stands of knotted up blonde hair and probably should have just had my head shaved!

She also helped me through the crying jags since my hormones were going crazy. When one of my front crowns kept falling out, she made me laugh at myself being bald and toothless as I would call the dentist to glue the tooth in one more time till I finished treatment and could take care of the tooth properly.

We both needed surgeries and we never missed being the person to go with each other for surgeries. Li also got a dog named Shelby who is part shih-tzu and part maltese. Li had moved from a studio to a one bedroom so she could have more room and be able to take care of Shelby. She bought puppy gates and it was so much fun to visit her with Shelby, who I fell in love with from the day I saw her fitting in the palms of Li’s hands.

When Li had some cysts that she was not sure were cancerous she had an oophorectomy. Fortunately they were not cancer. She woke up crying which was so unusual for her. I think her mind knew that her female plumbing was missing and her tears were her hormones and her mind realizing that her breast and her ovaries etc. were missing.

In February 2007, I had a recurrence in the same breast, which my breast surgeon said had to have a mastectomy. I had finished treatment a year and a quarter earlier and had several biopsies that were false alarms in both breasts. My breast surgeon handed me business cards of plastic surgeons that he worked with.

The first surgeon saw me right away and it turned out he did Li’s reconstruction when she had her mastectomy and her results were awful. He wanted to do a Diep Flap (taking the tissue from my tummy and putting it in my breast). He also wanted $30,000.00 dollars over my co pays with my insurance to do the procedure.  I ended up picking the plastic surgeon that accepted my insurance, but that decision left me with many extra surgeries because I had a radiated breast that caused multiple surgical failures.

Like every other surgery, when I had the bilateral mastectomy surgery,  Li was with me. I encouraged her to go back to the first surgeon and get him to fix her botched job. She had her surgery after mine and when I went to talk to her doctor the first thing he said to me was “It’s very hard for a woman to lose her breasts”. I could not believe he didn’t recognize that I was in his office only two months before Li’s surgery. I said “Tell me about it . I have had a bilateral mastectomy with reconstruction”.  The next thing he said was that Li’s insurance probably wouldn’t pay for her stay that night. I explained she had a pre-approval letter and let him know that I saw him for a consult making him have to say he remembered me even though he didn’t. Awkward!

I knew how organized Li was with her paperwork, so when I went to her hospital room after speaking with her surgeon. Li pointed me to the paper with the pre-approval from her insurance. I called her insurance right from the hospital to make sure they were covering her hospital stay for the night. The plastic surgeon was wrong.

The next morning, Li had trouble breathing and she felt very out of sorts. We called the nurse who got hold of her Doctor. He said “When I did the surgery I may have kind of sort of nicked her lung”. I asked him, “In what percentage of patients does this occur”? He replied, “only her”.  I asked what they were going to do about it and he told me they would do a surgical procedure right in her hospital room by surgically placing a large tube in her side to build her collapsing lung back up. I couldn’t resist asking, “Are you sure her insurance will cover her to stay at the hospital longer after the procedure”? Of course the answer was yes, and I am so glad Li knew to get approval to stay overnight for her procedure, because if she had gone home and her lung collapsed I don’t want to think about how that would have gone down.

I stayed with my friend Li to hold her hand as long as I could while they prepped her for the surgery. They told me I had to leave the room while they did the surgery or I might faint. They don’t know me. I am very good in hospitals and I can handle blood and surgery.

When I needed my tissue expanders out and got my first implants, Li was with me. That surgery eventually failed.  After my recurrence I was very beaten down and I really wanted to spend some time with my family living in Tennessee. I ended up selling my LA condo and moved part-time to Nashville so I could be closer to them. But I kept my doctors and especially my oncologist in LA. I was lucky that another great friend in the group of 8 women breast cancer survivors (that now met at each other’s houses), rented a room to me in LA, so I could travel back and forth.

In February 2009, I flew to LA  for the monthly group meeting and hung out with Li for most of the time like we always did when I came to LA. We would go together to doctor appointments, restaurants, meetings and I also would bring my computer over and get work done while she did her work since she had wifi. She looked the healthiest I had ever seen her. She had gained some weight and her hair looked so beautiful and healthy. I told her how awesome she looked and we were so glad we made it through all that treatment. Li mentioned the last time she saw her oncologist she was told that it was a great sign that she was 4 1/2 years out with her pathology.

She was supposed to have her appointment with her oncologist when I was there and we were going to go together, but her oncologist had to change it, so Li changed the appointment for her birthday on February 19th. Li told me she had a small rash on her breast that she thought her bra must have caused. We both ate very well as we were enjoying the fact that our stomachs were returning to a new normal.

I returned to Tennessee and I called her later in the day on February 19th to wish her a Happy Birthday, assuming her oncology appointment went well since she looked so healthy. Li was a mess. She said that her doctor sent her to her breast surgeon for an immediate biopsy and the look on her doctor’s face made her feel like this was extremely serious. It was. The rash was skin legions from Metastatic Breast Cancer (MBC) and she also had it in her bones. She was Stage IV and had to start chemo again right away.

I ended up moving back to LA permanently in July 2011. I was very glad that I could be with Li so much during the last seven months of her life.

Li’s strength, courage and determination throughout her treatment were amazing. I felt awful especially thinking back to the day when we were going through primary treatment and she was going to have what I thought was  her last chemo the next day. We were together in front of our favorite restaurant “Lucy’s” in Santa Monica. Li’s red cells were awful so she had to sit down on a bench. I said to her “Li this is the last chemo you will ever have to do again in your life”. Sadly I was wrong.

Li worked very hard putting her affairs in order before the cancer traveled too far for her to have treatment anymore. As soon as she was sick with MBC she asked me if I would take care of her dog Shelby. I said, “of course” yet I hoped she was around for a very long time to enjoy the joy that Shelby brings. I remember when she was getting close to the end and I asked her if she was afraid. She said, “I’m not afraid of death but it’s the indignity of all of it that bothers me.” I knew that losing her mobility and not being able to do things for herself plus ending up thin, bald, and with a huge stomach from her liver metastasis building up fluid was no picnic. Luckily we found the most wonderful caretaker, Cora, who Li and I adored. She was such a comfort to Li constantly cleaning and making Li’s home beautiful plus running any errands Li needed done.

A few days before she died the caretaker Cora, Li and I had dinner. Li sat up in her hospital bed that we had in her room at home while Cora and I sat in chairs surrounding her. I said, “Li remember when we first went through chemo and we thought we knew so much about breast cancer? Boy were we wrong”. Li and I just laughed. We were trying to be normal having dinner, but truthfully there was nothing normal about anything that was going on. Li was getting more tired and going from moments of extreme clarity to moments of disorientation and confusion.

The last night of her life I came to join Li for dinner and she was particularly tired and didn’t feel like eating. I held her hand for some time while she went in and out of sleep. She said to me “I always love when you come by for dinner”. I told her that I loved her and was so grateful for our friendship, which I said at the end of so many of our conversations. She said she loved me too and went back to sleep.

She died that night and I received the call from another great friend who had also been by Li’s side through this daunting process. Li donated her body to science and did not want a funeral. When they came to get her body for UCLA, I was so impressed by how dignified they wrapped her up in a beautiful white sheet.

Since I promised her I would take care of her dog Shelby, I took Shelby and all of her things back to my home that day.  I miss my friend a lot. Thanks to her incredible gift of Shelby I feel Li’s presence every day.

Li’s death from MBC along with the friends I know who have cancer that has metastasized has made me determined to make an impact on seeing that we have an end to this disease.

I know that 1 in 8 women will get breast cancer in their lifetime and 109 women in the US die a day from breast cancer. (I haven’t forgotten that there are also men that get breast cancer too). This means one death every 14 minutes. With each person there is an important story.

I feel guilty sometimes that it wasn’t me instead of Li. It still could be me. That’s what is so cruel about the disease. We think we know so much more about the disease, but when it comes to the loss of lives we haven’t made much progress. True we can keep someone alive longer with chemotherapy drugs, but eventually cruel cancer figures out a way to outsmart the drugs so they no longer work.

My fearless friend Li, was not just another statistic. We had an incredible bond as a result of breast cancer and we cemented our friendship with being supportive of each other as breast cancer was always with us.

I know her spirit lives on through the memories of her.  I especially get comfort every day from Shelby. I am truly lucky that I got to know Li and I treasure the time that we got to spend together.

With Leukemia Dr Susan Love Continues to Inspire Us

When l read the terrible news on Dr Susan Love‘s Blog that she has leukemia, I was shocked. I just couldn’t believe that such a great person like Susan could have this terrible disease. She is so dedicated to her work and I am so honored that she has come to so many events that I have also gone to.

My favorite event was when the BCCRF (Breast Cancer Care and Research Fund) headed by Michele Rackoff organized their first summit Saturday September 4th called “Taking Action to End Breast Cancer-A Women’s Conference” in Manhattan Beach. The speakers were Dr. Leslie Bernstein (Epidemiologist & Researcher), Dr. Lupe Salazar, (Medical Oncologist & Immunologist), Michele Rakoff (patient advocate) and Dr. Susan Love. After they spoke Susan had a book signing and my friend took a photo of us.

After that we had a lovely luncheon and Susan sat at my table as we all discussed breast cancer. She was so fascinating to listen to and I really appreciate they way she spoke with us in such an inclusive way. I asked her some questions and her brilliant mind had me mesmerised by everything she was talking about. We talked about the slash and burn approach to breast cancer, whether we are using the right treatments, and how we are going to change the conversation so that we finally make progress in ending this disease. Susan is also so down to earth. We also talked about  her Army of Women. I just finished participating in one of her Army of Women Studies the day before she announced her illness.

Susan started her treatments in the hospital on Monday, June 18th. Leave it to her to say to her friends on Facebook “I have  signed up for a free month of Amazon Prime and streaming Netflix …. I start treatment Monday and face 4-6 weeks in a hospital room! But will have wifi….so stay tuned”! She is such an all around giving person of her time and energy. She has so much grace and cares so much about breast cancer. Her book kept me company while I had to learn what I was facing when diagnosed, had surgery, did chemo, radiation and then had my recurrence. I also looked up everything for my friend Lila who died in January from breast cancer when she had her recurrence in 2009. In fact I made sure I got the latest edition to try to find any bright spot I could about her disease.

I just keep wishing I could do something for her. Of course I have said every prayer I can think of and I am also frightened. I know that she will fight this and keep her awesome personality throughout all of her treatment. But still this kind of treatment is heavy stuff no matter how strong anyone is. Leave it to Susan to have such a bright attitude. Today Susan said, “Day 3 So far so good…doing laps around the floor and found an electronic piano to practice!” She has such great wit.

I have decided because she is going through this with so much positive energy that I am going to follow her lead. Her bravery, humanity, and humor is so inspiring. Keep it up, Susan and thank you for being  in our lives. My prayers and thoughts are with you and the rest of your family.