Renee in Cancerland

 

How did I end up here I often wonder?

Let me start from the start and make this as quick and easy as possible. I am going to use what me and my other Lifer friends call “cancer talk.”

Age 30: Stage 1, Triple Negative breast cancer.

I did what I was told: chemo (A/C x 4 and Taxol x 4); lumpectomy; 36 radiation treatments.

After surgery, I was informed that I had had a complete pathological response to the chemo treatment. Pretty much that I had NO cancer left for them to remover during surgery.

GREAT I thought. I did kick cancer’s a*s.

Almost 16 months later, I was approved for my yearly CT scan to make sure all was still well. I honestly thought nothing of this appointment because I thought me having a complete pathological response meant I was good to go.

I thought wrong.

Really wrong.

I was told the breast cancer had spread to my bones and lungs. I honestly had NO idea this was possible. I mean, I thought breast cancer meant in my breast. I was quickly educated on how little I actually knew about Breast Cancer.

I started with abraxane which didn’t work. My tumor grew while on it, which was VERY traumatic to me. I thought it was going to be like when I did chemo for Stage 1…one chemo and done.

I moved on to carboplatin and gemzar plus a trial of BSI-201. After 6 weeks, we scanned and it showed I was NED. No one wanted to believe it, so I kept on this combo for 6 months until my body could not rebound. The decision was made for me to stay on just the trial BSI-201.

All was great for 8 months until I was walking down some stairs when my right side went numb. I called my oncologist, and she said to go straight to the ER. After an MRI, I was told I had a mass in my brain about the size of a tennis ball.

After brain surgery, I thought I was all clean again. That didn’t last long. In November my leg went numb again, so back to the MRI machine. Another mass was there…in the exact same place. Surgery again. 6 months went by with me recovering again, and the same symptoms appeared and I just knew that the cancer was back. It was. 3rd brain surgery in 9 months. Recovered once again and all was well for some time.

This May I had to get a bone biopsy because all my counts had been continually falling. The biopsy showed that I have MDS (pre-leukemia). From then to September I was able to get chemo while the search for a bone marrow donor was on.

As of now, two 100% matches have been found for my bone marrow transplant! I should have an answer from one on Monday! I can’t even start to explain the excitement, fear and so much more that is going on in me.

So for now, that is my story. I pray to add that after the bone marrow transplant, I stay clear of any kind of cancer!


-Renee Sendelbach

Renee In Cancerland - The Book

My Life Matters

Welcome to the next way to connect with one another in the MBC community, My Life Matters. The Tigerlily Foundation's podcast series dedicated to sharing the perspectives of and learning about the unique challenges facing young women living with metastatic breast cancer, the MBC community and what they are doing to change it.

My Life Matters is hosted by Freelance health writer Erin Azuse RN, BSN, and features guests discussing topics such as the importance of clinical trials, balancing life and cancer. The conversations with guests are filled with honesty, stories of remarkable strength, and insight into relevant clinical topics.

Monthly episodes will be released on the 1st of each month and posted on the My Life Blog and will also be available in the iTunes Store.

Thank you to everyone that has contributed and we look forward to sharing this powerful series with everyone in the Metastatic Community.


Warmly,
Tigerlily Team

Scan-xiety

It all starts with "it's time to schedule your scans again" this is when I turn into a fading flower.

I was this vibrant, I can conquer the world, F cancer type of person, then it all goes downhill as each day and moment gets closer to scan day. I literally wait 4 days before I can even muster up the courage to schedule the scans.

Scan-xiety (scan anxiety) is a term those with cancer is familiar with. When you have cancer no matter the stage, you have to get some sort of scan of your body to make sure there isn't any cancer progression rather it be a MRI(brain, breast, back etc.), bone scan, ultrasound, CT,&/or PET scan.

Why do we freak out??!!? Welp, it's simple. I don't like the fact a machine is looking for something or finding anything else in my body that even blinks cancer. When you have stage IV metastatic breast cancer the goal is to keep it contained in the current locations. You want it to "stop freeze" remain where you are and be silent or shrink in that same location. Don't you MOVE, not even one inch.

This scan process occurs typically every 3 months. The time from making the scans appointment until the day of reckoning (results) with your provider, is scary as hell!!!Why? Why get all worked up about it?? It's just a diagnostic study...

Let me paint an image of how stressful this process actually is. The week before the scan you get pre-scan syndrome. Nerves going haywire, every ache and pain you feel, you think its progression which leads to you paying closer attention to it. Is this new? Have I felt this before? Did the pain heighten? Irritability, frustrations and freak out mode sets and it don't go away until you receive the results.

The night before the scans there is no sleep, insomnia is your friend. I start to ponder on my previous scans and try to remember the image so IF I even get a glimpse of my scan image I can try to identify if there is a "new" spot.

The day of the scans is an ALL day process. In addition to the anxiety, you are restricted from eating, you have to drink contrast, your cold, you have to fill out paperwork with repetitive questions, and you may have to deal with people who have an attitude when they check you in while your silently cursing them out in your brain, "look, dang it...I have cancer and I'm scared as crap your making it worse”. Being outside the oncology department can be a daunting process because the sensitivity level decreases drastically.

I usually have 2 scans scheduled that day, sometimes 3 if it's my year for a MRI of the brain scan. After getting an IV, I get injected at the nuclear medicine department with this substance that I call “Hulk juice” it’s the same gamma rays used to turn hulk into the angry green man. This radioactive dye is attracted to all the cancer spots in my body new and old. I then have to wait 3 hours and drink tons of fluids so I can get a full body scan from head to toe which is similar to getting a 45 minutes long x-ray. You have to lay completely motionless in this freezing cold room. If there are cancer present in the bones, the spots will become brighter on the images. This is an image of one of my actual bone scans.

After the “hulk” injection I am now radioactive for 3 days meaning I could set off the metal detectors. Once I am done with the injection I go over to the CT department and obtain my “lemonade” flavored contrast drink. It’s about a liter of fluid that I must complete within 2 hours. During this time I am still starving from hunger. Once I return after 2 hours to CT, I am then lying in this noisy machine that has me hold my breath multiple times and injected with IV contrast that makes me feel like a hot fire pit and as if I peed myself. This is a 10 minute process but a lot is going on at once.

All my scans are now completed for the day, I am very loopy because I needed anti-anxiety medications to keep me calm and lying still. This day takes me 6 hours and leaves me hungry and exhausted. I return home and is now nauseated from the contrast and I occasionally vomit. Then we WAIT…wait…and wait… until results are received and this could take potentially 2 weeks. So you worry for 2 more weeks. The results will be the cancer is stable with no progression or we have new cancer spots which proves we have progressed and will now need a new treatment regimen with a whole new set of side effects. YAY!!

It’s hard to overcome this emotion but you do your best, this procedure has to be done. Find ways that will ease you. Bring a friend, watch some Netflix while you wait to keep your mind off things, ask for warm blankets (that always make me feel warm on the inside), get a prescription for anti-anxiety medications so you can just sleep through it, or ask to listen to some music in the room.

This is why we fear the scans and how it gives those with metastatic breast cancer Scan-xiety. We must endure this for the rest of our lives, until there is a cure for cancer. We will bloom again!!

MyLifeLine.org

A cancer diagnosis can overwhelm entire families in addition to the physical and emotional toll it takes on patients. Many questions are raised that often go unanswered, at least initially. The sheer volume of communication needed to provide updates to family members and friends can also be overwhelming. MyLifeLine.org, a Denver-based non-profit focused on social and emotional support services for cancer patients, was created to help solve this problem.

MyLifeLine.org exists to reduce the stress and anxiety associated with a cancer diagnosis. We connect cancer patients and caregivers to their community of family and friends for social and emotional support. We provide free personalized web sites, communication services, cancer resources and tools that allow patients and caregivers to share their journey and focus on healing.

I became involved with MyLifeLine.org due to my own experiences and the promising role technology plays to help patients and caregivers. I live in Denver with my wife and two young children while the rest of my extended family resides on the East Coast. When a family member experiences a health issue it can be difficult to travel to see them and provide support in person. Today’s technology, however, ensures that every patient can stay connected to their entire support community, and each member of the support community has the ability to stay involved and provide strength and inspiration to the patient. Research has shown that a thriving support community is beneficial to patients’ healing process.

• A recent study of 735,0000 cancer patients included in the Surveillance, Epidemiology and End Results program found that improving social support for our patients may be equally as important as providing effective therapy, and it is less costly to develop and implement.1

• The provision of practical support increases the likelihood of adherence to evidence-based medicine 3.6 times.” 2

Patients aren’t the only ones who can benefit from a strong support community. Caregivers, the people taking care of the patients and coordinating communication and care, need to be supported just as much as the patient. It can be equally overwhelming to be the primary person supporting the patient and managing care, appointments, medications, meals and transportation on top of lives that are already busy.


WHAT PATIENTS & THE ONCOLOGY COMMUNITY ARE SAYING


I encourage anyone facing cancer, or anyone who knows someone with cancer, to consider setting up a free site with MyLifeLine.org. We’ve heard from a countless number of people how it positively changed their experience with cancer. A family living across the country was able to know when their loved one had a chemo appointment. A small town rallied around a hardworking individual to raise thousands of dollars for their medical costs. A single woman was able to schedule meals delivered to her from her eager to help group of friends. We heard from one patient who loved MyLifeLine.org because he was able to have a sense of normalcy with his friends; since they were up to date on his condition, they could spend time together without asking about his cancer.

MyLifeLine.org goes beyond the personal websites to connect patients and caregivers to their support community, and allow them to gain control, be empowered and become their own advocate. The service is offered for free to all people impacted by cancer.


1. Aizer AA, Chen M-H, McCarthy EP, et al: Marital status and survival in patients with cancer. Journal of Clinical Oncology 31:3869-3876, 2013
2. DiMatteo MR: Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology 23:207-218, 2004
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About MyLifeLine.org: About MyLifeLine.org: MyLifeLine.org Cancer Foundation connects cancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Live Life Now

 I am a 45 year old who is taking breast cancer on a ride of its life. I am battling this disease for the 3rd time and am now living with stage IV Metastatic breast cancer. My cancer began as a non-invasive form in 2003. As a result I had a mastectomy, reconstruction and took medicine for 5 years and went on with her life. In 2010 I noticed a small bump on my skin, on my left breast. It didn't hurt so I ignored it. A few months later during a routine checkup I mentioned it to my surgeon. My surgeon immediately started taking pictures, and said that she would like to remove it.

The pathology report later deemed it was in fact cancerous. In 2012 from a visit to urgent care for a cold, and a weird feeling in my breast bone area, after x-rays, and a return call to follow up, it was found that the cancer had returned and spread to my chest walls, spine and head as stage IV metastatic breast cancer. This disease, which has graced its presence in my life in 2003, as "non-invasive,” has again and again invaded my life.  Although this disease has changed my life I refuse to let IT own or define my journey in life.

While I am living with this terminal disease, I realize that others with this disease may not be living or coping as well as they could be. I decided to make lemonade with my lemons and founded a 501(c)3 organization entitled Angel in Disguise Inc.

Our Mission: To help people including the general public with task that they are unable or incapable of completing alone. To focus on breast cancer survivors and their families; aiding with lifestyle changes and hope by helping them to “live life now!”

We provide transportation needs to doctor appointments, to get medicine or to run light errands to breast cancer patients. As well as offering peer support. Angel in Disguise Inc. also assists single parents with transportation needs to and from school for school aged children as well as volunteer emergence teaching children how to give back and serve in the community.

I have also been blessed with the opportunities to speak publicly to motivate and inspire others. Everyday my goal is to" Live Life Now!"

Recently I participated in My 2nd Act Raleigh, a national stage performance that will be shown in 142 countries via internet TV. 

Youtube channel is https://www.youtube.com/channel/UCj52rB6a5hrqzd_OWawulow

my website is angelindisguiseinc.org

Angela Baker, MSOD

"Aiding You to Make the Impossible, Possible"

Die-In for Metastatic Breast Cancer in Madison, Wisconsin

Dear Friends,

Tigerlily is proud to partner with One Woman Many Lakes on October 13th at 11:45 for a Die-In for Metastatic Breast Cancer in Madison, Wisconsin on the State Capitol steps by State Street. Last year was an extremely successful event with over 120 people attending as well as coverage from the local news stations. This year we hope to surpass that and have our voices heard from Wisconsin all the way to Washington. Help us educate legislators and the public that stage IV needs more. 

Information about Metastatic Breast Cancer and ways to help advocate for more research funding for this disease will be available. Contact me at info@onewomanmanylakes.org if you plan to attend or would like more information. The ceremony will go from Noon to approximately 12:20.

The other two women who spoke so eloquently have died this past year from Metastatic Breast Cancer. It is a powerful visual and statement to why we must continue to fight for more funding.

-Mary Gooze
Founder of One Woman Many Lakes

Live in hope not fear, fear will ruin your life

From the various emotions we experience, fear is my least favorite. Fear is not the solution. It is more like a key without teeth which cannot open any doors. It is a key which is of no use and no benefit. Then why be in fear? It's okay to feel scared, but it is more harmful mentally and physically to let fear take over. The goal is not to let it control you and take over, especially when dealing with cancer. When anyone hears the word “cancer," it is natural to be fearful at first. Rather than allow fear to dominate, open the door to hope. Once the door to hope is open, there will be no room left for fear.

There is a lot of uncertainty in the cancer world which is worrisome at times. In general that is a hard concept to deal with. We all want answers and we want them now. We like to have a plan for everything and how it is going to happen and what the outcome will be. You can’t do that with cancer. Yes, you can have a plan of action in place. Yes, the doctors will try their hardest to answer your questions to the best of their ability. You have to remember that doctors do not have complete knowledge of what the outcome may be or what the future holds. What I realized is that they work hard and have hope in the outcome. Hope is the key with teeth which can open doors for continuous research, medical advancements and clinical trials. Most importantly, it is the key which opens the door to physical, emotional and spiritual healing.

We all have choices to make and each choice we make will have an impact on our lives and the lives of our loved ones. I choose to live in hope and not fear. I will not allow fear to disable me and disable the ones I love. It is a choice that you make. You control your emotions and your outlook. I noticed that whenever I became fearful about cancer I wasn’t living. My fear leads my cancer to take over my life. I have decided cancer will not dictate the way and manner I live my life. My goal is really simple – I just want to live and enjoy this beautiful gift called life. Fear will make you forget the blessing of life. It takes you away from your loved ones and from making loving memories. Your body will feel it. The stress will hurt in different areas and make pain intolerable. Simply choosing to live in a state of hope rather than fear, you have already beat cancer. You lose to cancer once you let fear take over. Always keep in mind and heart ,hope over fear.

Laughter

My name is Annie Bond. I was born in Wimberley, TX. I went to college in Austin, TX, and spent most of my childhood and young adult years making people laugh. I love theatre, competitive speech, dancing weird, and most of all, doing improv and stand up comedy and filming sketches with my friends. I have dreamed of moving to Hollywood to become a famous actress since I can remember, and I moved to Los Angeles 3 years ago to do just that. I even found a really great boyfriend who loves me, and also saved my life by finding a lump a breast one day. I turned 26 shortly after that, lost my health insurance, and spent months trying to find a plan that worked for me and ACTUALLY covered any type of mammogram or ultrasound for a 26 year old woman. I’ll tell you know, most of them don’t, but it’s worth the expense. I had no family history of breast cancer, and my sister had had a benign lump removed just a few years before mine showed up. I had no reason to worry...

On August 5th, 2015, I was diagnosed with breast cancer, and it had already spread to my lymph nodes. I immediately spent a month in the hospital, and had pretty much every MRI you can have, along with PET scans, CTs, a liver biopsy and a bone biopsy. All of these tests showed that the cancer had spread to a singular metastasis in my liver. I was 26 years old, feeling as healthy as can be, but my body had been invaded by ER/PR positive, HER2 negative, Stage 4 Metastatic Breast Cancer. Or an alien probe. I still think it might just be an alien probe. I immediately saw a fertility specialist, and froze 13 eggs with the help of a GoFundMe that my parents and friends set up. Insurance also doesn’t cover loss of fertility at 26, but its again well worth the money if you can swing it. I saw multiple surgeons and doctors, but finally found my cancer fighting soul mate in Dr. Waisman at City of Hope Hospital. He started me on a big shot in the butt of Lupron, and I took Tamoxifen for 3 months. My tumors were shrinking, but not fast enough, so we changed the cocktail. I have been on Lupron, Ibrance, and Letrozole since then, with a weekly punch of Vitamin D. Goodbye grapefruit, hello hot flashes and night sweats! The tumors became more responsive to treatment, and I made dietary changes, since as cutting back on sugar and alcohol.

I have not stopped pursuing my dream since my diagnosis, and have in fact been working towards it harder than ever. Cancer made want to run away from my dreams, made me feel hopeless, but comedy makes me feel strong and capable. I know I will be fighting this stupid disease until science can cure it or my body rids itself of it, and I would much rather fight through laughter than tears. I recently had a robot assisted laparoscopic resection of my liver tumor, followed by a lumpectomy with some lymph node removal. The good news is that they got all the tumors out, and I will start six and a half weeks of radiation soon. I expect to be celebrating with no cancer in my body shortly after that. If you ever need a laugh, go watch my YouTube videos, or do some awkward dancing by yourself!

http://theanniebond.weebly.com.

My Reel - https://www.youtube.com/watch?v=OubJhF1GTNE

Transformers Parody Trailer (I'm Mark Whalberg) - https://www.youtube.com/watch?v=diBojTMBMEo

How To Know If Your Trees Are Dead! - https://www.youtube.com/watch?v=LKAOZ_VnFaw

Labor Day Feminist Club  - https://www.youtube.com/watch?v=ftuqUaTpTZI

BONUS VIDEO!! Parody Music Video my coworkers made for me! Its amazing - https://www.youtube.com/watch?v=_5HVVhgnC7I

Metastatic Breast Cancer Collateral Damage Project

Dear Friends,

The Tigerlily Foundation is pleased to partner with Dr. Susan Love Research Foundation on an important project: the Metastatic Breast Cancer Collateral Damage Project. If you have metastatic breast cancer, please consider participating by completing an important questionnaire that is part of the Health of Women (HOW) Study™. You do not need to participate if you do not have metastatic disease.

The goal of the project is to capture and quantify all the life-altering impacts that metastatic breast cancer and its treatment have on people living with the disease and to offer specific recommendations to improve their quality of life. Your answers to the questionnaire will help document every aspect of the collateral damage that metastatic breast cancer patients face.

For the project to be successful, a diverse group of thousands of women and men with metastatic breast cancer need to provide their real-life experiences. Complete the questionnaire today to help metastatic breast cancer patients. It should take between 30 and 45 minutes, and you do not need to do it all in one sitting (just be sure to save your work before you take a break).

Current HOW Study participants will need to log in to the HOW website and find the Metastatic Breast Cancer Collateral Damage Project questionnaire in the list of available questionnaires. If you are not already a participant, you will need to create a HOW account first at  https://www.drsusanloveresearch.org/how-study/my-overview.

Thank you for participating in this critical research to benefit metastatic breast cancer patients. If you have any questions before you begin or while you are completing the questionnaire, please contact Dr. Susan Love Research Foundation at how@drsusanloveresearch.org.

With appreciation,

Tigerlily Foundation

Family Planning After Cancer: Where We Begin

When a woman is diagnosed with breast cancer, regardless of stage, the focus is on the best course of treatment to increase the odds of survival. I was initially diagnosed with stage 2B breast cancer; the tumor so big that chemotherapy had to be administered prior to surgery. On December 22, 2011 while I was visiting my family on the east coast for Christmas, just three days after my diagnosis, I was receiving my first chemo treatment. Just a couple decisions that would have to be made before starting chemo: Did I want to use Cold Caps to preserve my hair? (I declined.) Could I preserve my fertility? (I explored.)

The three days between diagnosis and that chemo treatment were a blur. I was fortunate that my mother helped spearhead the doctors appointments. When my doctor informed me that the chemotherapy could impact my fertility, he suggested I consult a fertility specialist. My Aunt had used a fertility specialist to bring my two beautiful cousins into the world, and my mother had the fertility specialist’s cell phone number, which came in handy since many were out of town for the holidays.

Dr. Cekleniak, a fertility specialist at IRMS St. Barnabas in NJ met us after hours since time was of the essence and she wanted to discuss my options. She and my oncologist had spoken prior and she looked at me with her big beautiful eyes and delivered a blow, perhaps equal to

the one I’d received a couple days prior, when my general practitioner called while I was packing my suitcase for the east coast, to tell me I had cancer. I was numb from the news of the cancer and was having trouble processing the fertility implications. I remember fragments, “Your cancer is aggressive…There is no time to wait…You need treatment right away. It could take months for you to be ready for a retrieval. If it were me (because my mother had asked her what she would do in this situation) I’d deal with the cancer and then reevaluate my options. I’m sorry.” Despite the numbness, I cried. I cried because that day I felt like my dream of being a mother was slipping from my hands. I had spent all this time focusing on building a career so that I could be an example of a strong working woman for our future child and in one fell swoop, six months after my 30th birthday, I had cancer and may never have that future child. At least not now, not until we get this cancer out of my body.

So I went through all the rounds of chemo, the radiation, and single mastectomy. I was trying to find a “new normal” and put the idea of having a family into the future. My mother met women who had estrogen sensitive breast cancer and went on to have children after their breast cancer diagnosis. Some of them had preserved their eggs or embryos in advance of treatment, others opted for two years on Tamoxifen instead of the standard five years. Since that time, studies suggest that being on Tamoxifen for ten years is more effective than the five years. It felt like my timeline was getting pushed further and further back.


I began contemplating the risks versus the rewards of getting off Tamoxifen after two years to try to retrieve eggs. The risks: I’d cut my treatment short. Would my cancer be more likely to return? If I were lucky enough to get pregnant, how would I manage anything cancer related during the nine months of pregnancy- scans, a recurrence, and so forth? The reward: Eggs or embryos so that my husband and I could bring our future child into the world. I have to confess, we were not contemplating adoption at this point. We were still very hopeful that we’d find a way for me to have our child. I’ve later learned that adoption agencies consider early stage vs. late stage survivors differently.

A couple months after completing my final breast reconstruction, all of these conversations were tabled for something much more time sensitive. Excruciating headaches had led to a brain MRI that had led to a diagnosis of brain mets. My stage 2b was now stage 4 breast cancer. I had brain surgery and focused on healing. We had the brain tumor tested, it was even more estrogen sensitive than the breast tumor so my protocol stayed the same: Tamoxifen every day and Lupron shots every 3 months forcing me into early menopause. My mother brought me to a number of doctors for second and third opinions. She wanted to make sure she was doing everything to keep her 31-year-old baby alive. After they confirmed that we were doing everything in our power, I always asked: “Do you think I’d be able to have a baby one day?” I could see the doctor’s searching for the right words and for the most part it was, “It would not be recommended that you harvest or carry.” But were there other options? They didn’t seem to know much about what those other options were. Even one doctor, and she was a female, so even in retrospect I’m shocked by this response said, in reaction to my tears, “At least I’m not telling you that you have to have your ovaries removed.” Was that supposed to make me feel better?!

2013 is the year that I recovered from brain surgery, the year that I tried to pick up the pieces of my life, the year that I traveled because I didn’t know how long I’d have left and there was so much of the world that I wanted to see. It was the year that I needed to distract myself from the relentless feeling that something had been stolen from me: my future. Both my life, and the life that we had always hoped to bring into the world. When I wasn’t traveling around the world, I found myself in and out of a deep depression. For anyone that knows me, that is shocking. I’m typically a Tigger, not an Eeyore.

In 2014, I finally found my way to a psychologist at Sloan Kettering who specialized in young women with cancer. Our conversations always came back to desire for a family. My psychologist introduced me to a nurse practitioner that specialized in helping women with

their family building options post-cancer. She led me through my options. All varied in risk, but for the same reward, our future child. I was told that adoption would be difficult until I was five years out from my initial diagnosis and even then could prove a challenge as a stage 4 survivor. At the time, that would have meant waiting three years. None of the options available enabled me to carry our child though, something that was not recommended. Regardless if it was my egg or a donor’s, we knew that our child would have to be carried by a gestational carrier, someone with no genetic tie to our child but a temporary home for our child to grow.

I never thought this was how we’d be having a child but it didn’t matter. It gave me a lot of peace and a clarity of focus to know that there were potential options. It was the beginning of our surrogacy adventure, though it wouldn’t be until 2015 that we found our gestational carrier, aka surrogate, aka “Aunt” (she is actually no relation to us) Meghan. Aunt Meghan, our surrogate, with the help of our fertility specialist Dr. Cekleniak, is now 20 weeks pregnant. It has been 2.5 years since that meeting where we learned our options. It has been over a year since we met Meghan for the first time. It has been 4.5 years since I was first diagnosed with breast cancer. It has been 3.5 years since it metastasized to my brain. It has been a long road and we have learned much along the way. All the while, we’ve been filming a documentary to raise awareness for metastatic breast cancer and infertility. I hope that others find some solace in this resource eventually, and in the meantime, I hope this blog can serve as a resource. Even in this first post, there are many details to unpack in subsequent entries. Just the topics mentioned here to be addressed: fertility preservation, IVF post-treatment, adoption post cancer diagnosis, financial and emotional resources for cancer survivors as they consider building a family, impact on your relationship with your partner, egg donors, surrogates, and third party reproduction….and I’m sure other topics will come up along the way.

A recent study led by researcher, Catherine Benedict of Sloan Kettering focused on 346 women who were around 30 years of age and had finished cancer treatment about 5 years earlier. Almost two-thirds said they were concerned they may not be able to have children in the future. At the same time, only 13 percent of these women believed they were informed about their fertility preservation options. Regardless of whether you are currently contemplating your options, we need to spread the word so that women feel like they have the tools they need to make informed decisions. Yes, we’re potentially in panic mode trying to figure out how to handle our cancer diagnosis but it potentially goes hand-in-hand with an infertility diagnosis. We don’t know the answers. We don’t know whether the cancer will recur. We don’t know whether it will render us infertile, but just the feeling that we thought about it, knew our options, and made the decision for ourselves, makes a difference.

Cyan Gray Documentary

Until Our Friends Stop Dying

I’d like to say last week was an unprecedented week of losses in the metastatic breast cancer community, but I’d be lying. We have been rolled by these waves before. And god knows we will continue to see our friends die until science catches up with cancer, that wily beast.

Science is not there yet. Cancer is not yet a chronic condition like diabetes or heart disease or even HIV. Friends whose disease looked just like mine on paper didn’t respond at all to the same drugs that seem to be keeping cancer at bay for me. When I asked one researcher why that is, she said, “We’re still trying to figure that out.”

I am one of the lucky few, for now. I am an outlier. I have had no evidence of cancer for more than 2.5 years, since six months after I started a targeted antibody-drug conjugate that goes after cancer but leaves the rest of me relatively unscathed. I am so grateful to science for that. I still don’t have any eyebrows or energy most days, and my chemobrain lingers years after Taxotere and Carboplatin. But I am not dying of cancer at this moment.

I have been to friends’ funerals, taken lasagna to a grieving widower and his preschool-aged children, had what I’ve known will be the last conversation with a friend (but held it together until we hung up and then cried my eyes out), and I’ve hugged a powerful force of a woman only to have her be gone the next season. I know firsthand how short life can be. There are dozens of holes in my heart.

I fill these holes by throwing myself into life with my little family, by writing, by advocating and participating in the greater metastatic community, by adopting a puppy when what I really want (but can’t have and don’t have the energy for because of cancer treatments) is another baby. Then I get short-circuited because of exhaustion and grief, and snap at the dog for not getting back inside fast enough after I’ve let her out to pee. It is 90 degrees out at 7pm, the mosquitos are active, and I’m tired of standing at the door, waiting.

I have more anxiety than I know what to do with. I am angry. It is not the dog’s fault.

I feel guilty for being alive, for making it. Have I made it? I will know when I die of something else. I try to channel this strange mix of guilt and gratitude into action. Can one voice make a difference? Can mine?

I try to live in the present and not take for granted that I get to parent a frequently cranky almost-kindergartner. I get to plan meals and subscribe to magazines without too much fear that I won’t be around for the entire twelve month period. I get to think about summer vacations and attend my 20-year high school reunion this year. (I still cannot find it in me to appreciate getting to do laundry.)

It is an odd place to be, having been diagnosed with a disease that typically kills in less than three years and then faring remarkably well. I am always waiting for the other shoe to drop, not sure when my luck might run out. At the same time, I wake up in awe of the fact that I am still alive nearly five years after my diagnosis. As Mary Elizabeth Williams put it in her memoir on surviving metastatic melanoma, A Series of Catastrophes & Miracles, “This is the cruel reality of successful cancer treatment. You want so much for everybody to get what you got, and for it to work like it did on you, but that’s not how it happens. Instead, getting better often feels as random as getting sick was.”

I want this “getting better” kind of outcome for everyone.

Instead, my chest aches for the 41,000 men and women who will die of breast cancer this year in the U.S. alone. How do we begin to quantify this number in ways that will express our urgency? 112 every day. Approximately 194,750 since my diagnosis.

I am furious about my friends who’ve died too young. I am scared, too, for all of us diagnosed with late-stage cancer. In the back of my mind looms the shadow of this beast, and the burden we all carry because of it, until the science catches up, until our friends stop dying.

One Woman Many Lakes

What to do when you receive the death sentence of a diagnosis? Metastatic breast cancer kills 113 of us every day. How was I going to wrap my head around this disease and get through the next day…and the day after that…and the day after that.

Swimming became my refuge and my salvation. I had been doing sprint triathlons for 24 years when this diagnosis stepped up to try to stop me in my tracks. It has been two years since receiving this gut wrenching diagnosis but I have discovered I could take control of my life by rising up and literally jumping in the water.

It all began while sitting in my oncologist’s office hearing the treatment options and what may lie ahead for me when I asked him if I could still do the 2 1/2 mile swim that I had been training for which was scheduled right after finishing radiation. His response was, “Of course”. Two months later I was in Seattle in the water of Lake Washington swimming as if my life depended on it. It was empowering to conquer this lake and as I came ashore I felt that combining swimming and spreading the word about this disease was now my mission in life.


Fast forward from that day to a beautiful sunny March afternoon in Arizona’s Lake Patagonia with a 56 degree water temperature when I plunged into the water while my husband and dog followed me in a rowboat. We had our homemade sign stating the need for more funding for MBC and how to help. It was a lonely swim with few people on shore but one man stopped me as I exited the water and asked what I was doing. I explained my mission and he said, “I’ll write a check”. That was the beginning of One Woman Many Lakes and the plan to raise funds and spread awareness through swimming became a reality.


Since that first swim and nine months later, I have jumped into twenty-three bodies of water across the country and even took a plunge in Antarctica. People have responded with their pocketbooks and have helped spread the word on this disease but, of course, it is not enough. The young and old are still dying—I know I must continue swimming and advocating until a cure is found.

Now a new year is here and it is time to get in the water again but this time with a twist. The idea began when I read about Lesley Glenn of Chino Hills, California, a hiker who hasn’t let her disease slow her down. She and I connected and began brainstorming about doing a triathlon to highlight the fact that even though MBC is part of our lives now, it will not deter us from doing what we love. We put the word out about someone joining us to do the third leg of the tri and Leslie Falduto from Texas responded that she was a runner and would love to join in.

Now we have a team, a date and a goal—go nationwide and get anyone who has breast cancer, anyone who knows someone with breast cancer or concerned people who want this disease eliminated forever to join in and blast the airways.

On June 28th we want everyone across the country to get involved in doing something physical that day—anything from running to yoga to taking a walk—just get active. Let’s show the world that we are moving, thriving and want to stay this way but need research to keep us going.

Go to www.onewomanmanylakes.org and join our team to stay informed. Click on the advocate button that will provide you with an easy way to send an automated email to major cancer organizations requesting more funding. You will also find out how you and your friends and family can virtually join us on June 28th. Print out a bib, wear it as you do your activity and post it on social media using the hashtag #tri4mbc.

Research is our best hope and if the world starts shouting with us we will have more time being active, loving life and being there for our loved ones—and after all, that’s what matters the most.

Will this keep Jennie alive?

Will this keep Jennie alive?

Last year, I met an amazing woman named Jennie Grimes through Living Beyond Breast Cancer's Hear My Voice program. Jennie sat next to me in our first session of training and I was immediately impressed. And hearing her story, of an initial cancer diagnosis at 27, of a metastatic diagnosis at 29, of (at that time) almost 5 years of metastatic treatments, of losing her chance at being a mom because treatment stole her fertility...well, that's when a switch went off in my head.

I'd lived with my metastatic cancer for a year at that point, and I'd reached the anger stage of my anticipatory grieving process. I was angry that there weren't better treatments. I was angry at the lack of research dollars flowing to metastatic disease, which accounts for virtually all of breast cancer deaths and 90% of cancer deaths across organ of origin. I was angry about not getting to see my kids grow up, because median survival with metastatic breast cancer is only 33 months.

But after meeting Jennie, I knew what to do with that anger. I was going to channel it into doing what needed to be done to keep Jennie alive. I was going to demand that more research dollars go towards metastatic disease, and I was going to do it through direct action. Little did I know that Jennie felt the same way about me--and that's how MET UP was born, an organization committed to changing the landscape of metastatic cancer through direct action.

Since MET UP began, we've staged 6 die-ins across the country, met with Congressional staffers, testified before legislatures, held signs at scientific meetings, and kept up an endless social media campaign outing groups whose work will not save Jennie's life, or the lives of the other 250,000 Jennies living with metastatic breast cancer in the US, or the lives of the countless others living with MBC across the globe. And we've partnered with other groups, like Tigerlily, who understand that our cause is righteous, that our anger is understandable, and that our work is important.

But in cancer land, there can be a lot of egos, and agendas, and distractions from what really matters: keeping the Jennies alive. It's easy to go off course and end up mired in the weeds of the political intrigues in cancer land. There are so many fundraisers that don't contribute to research. There's so much research that doesn't contribute to saving lives. And there's so much posturing between cancer advocacy organizations about who gets what piece of the pie. And none of that is productive at all.

So, we've begun to ask ourselves a question every time we need to make a decision: will this help keep Jennie alive? If the answer is "yes", then we're all in. If the answer is "no", then we stand in opposition because it's a distraction from what really matters. We protest because it's how we get the attention of the decision-makers who are ignorant of, or who have ignored, our plight. We meet with political leaders to beg for our lives. We connect with researchers, and connect researchers to each other, to move the science forward.

All of this, we do because new and better treatments are the only things that will save Jennie's life, that will save the lives of all the Jennies of this world. This is the thing that drives us every day, in everything we do. It's what keeps me going in the face of hostility and belittling from legacy breast cancer groups--that what I'm doing can help keep Jennie alive.

The brutal truth of our movement is that neither Jennie nor I will see its final success, because this will be the work of years, and the odds are that neither of us have those years. But the harder we work, the faster we can change the landscape for metastatic cancer, the more Jennies will be spared from the death that Jennie and I will face.

The amazing Shannon Curtis wrote a song for our movement, and my favorite line from the song is "I am determined to save your life." That's what MET UP is about, and our movement won't stop until metastatic cancer is no longer a death sentence.