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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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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
As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.
I have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.
So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?
There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?
I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.
There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.
Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.
The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment” and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.
Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.
After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.
She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.
Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.
The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.
This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.
One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.
This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”
I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.
I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.
Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying th![Department_of_Defense[1]](https://a4bc.files.wordpress.com/2013/05/department_of_defense1.jpg)
e famous words, “One small step for a man, one giant leap for mankind.”
Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).
I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.
I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.
Below is information taken from the San Antonio Breast Cancer Symposium (SABCS) web site explaining what the symposium is all about. Although I was unable to attend this year, I have attended in 2009 and 2010 and it is a very exciting fast paced meeting with incredible presentations of abstracts and clinical trials that are all about breast cancer.
In the evening the Alamo Breast Cancer Foundation had wonderful medical professional speakers that have many patient advocates as well as advocates who receive a scholarship in attendance to go over the presentations that went on during the day. Some of my fellow bloggers and friends including AnneMarie (Chemobrain….In the Fog With BC from 2 AD), Lori (regrounding),(CJ (metavivor.org), Gayle (pinkribbonblues.org), Jody (women with cancer), and many more attended and they have blogged and tweeted about the conference.
I have followed the conference and put articles in my daily breast cancer newspaper at http://www.scoop.it/t/breast-cancer-news. I have picked a great source called Onc Live that has a great review of the presentations in articles that if you missed the conference or just wanted to know about it, here is an excellent place to read articles of presentations in San Antonio.
I had hoped this year would bring more research for Metastatic Breast Cancer (MBC) and as a patient advocate I am discouraged because there wasn’t much news on MBC, except progress with those that are HER-2 positive. As a patient advocate I think that all of us need to use our voices to get funding for more research when it comes to MBC.
About SABCS
Copyright OncLive 2006-2012
Intellisphere, LLC. All Rights Reserved.
Around the world every 23 seconds someone is diagnosed with breast cancer and every 69 seconds someone dies. That’s 1 death from MBC (Metastatic Breast Cancer) every minute and nine seconds.
Source: Pink Ribbons, Inc.
This is not enough progress in finding a cure for Breast Cancer. The National Breast Cancer Coalition (NBCC) has set a deadline to end breast cancer in 2020. As patient advocates we must also do every thing we can to help patients with MBC & see and end to MBC. 30% of all patients who get breast cancer will end up getting MBC no matter what their pathology was or how far along their primary disease in the breast and lymph nodes was. These are horrible statistics of real people with real stories dying every day from breast cancer. Only 2% of money used for research goes to MBC research. More money needs to be allocated to MBC research to stop these deaths.
You can help raise money for Metavivor that uses funds to help MBC (Metastatic Breast Cancer) by clicking on http://www.mbcaware.org/. It’s free and for such and important cause.
By visiting the site you’ve already triggered a $1 donation! Each action you take below is another $1 donated.
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| © Copyright METAvivor Research & Support, Inc. | This program was made possible by Eisai Inc. |
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.
The 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.
METAvivor was founded almost four years ago to fill the metastatic breast cancer research gap. At the time, no organization was giving any significant percentage of funding to metastatic breast cancer research and there was no opportunity to donate directly to MBC research. We were founded to provide that opportunity. We are now a nationally recognized organization focused on awareness, support and research. We are making a difference and you can help. We invite you to join us in advocating for MBC recognition and 
A4BC Founder's Blog 