A festival of lights both on and off the scan table!
As I was lying on the PET scan table on Monday, I thought about how much time I have spent in diagnostic machines since being diagnosed with stage IV breast cancer in April 2008. Every three or four months, I spend 20 minutes on the table trying to distract myself by living in the moment and trusting God that all is in divine order. Well, most of the time.
My propensity to mix up my calendar dates served as an advantage as I awaited this scan, however – a Hanukkah gift, if you will. I thought my scan was next week and by the time I figured it out, it was just a couple of days away. I decided I was going to anticipate good news instead of going down the dark road my mind typically takes me. I have been enjoying a long run with my current treatment, Afinitor — almost a year — and my last two scans showed shrinkage.
What I didn’t anticipate is the absolute fear and dread I felt during the short drive to pick up my scan results yesterday. My heart was beating fast and I had to take a few deep breaths and say some affirmations just to calm myself down. All the fear I had been avoiding came rushing in. What if cancer has spread to other parts of my body? What will I do if my treatment stops working? When in the hell are they going to come up with a new targeted drug for ER positive breast cancer?
Shaking, I opened the envelope. First, a feeling of relief. There were no new lesions and the tumor in my armpit, which seems to have been there since the beginning of time, was absolutely gone. Then I read on: the mass on my peritoneal area did not change in size, but there was an increase in standard uptake value (SUV). Although it sounds like the type of car driven by suburban soccer moms, SUV is actually another way of determining cancer activity. It’s not always accurate though, and can be influenced by things like exercising 48 hours prior to the scan (which I found out yesterday on the Internet, not from my scan place).
So Dr. Tami is stating that this is a stable scan. I will meet with my local oncologist on Monday and my consulting oncologist at Ohio State in a couple of weeks, but I think they will say to stay the course. I feel like a Death Row inmate waiting for a reprieve. Living with stage IV cancer is like that. You hang around until another new treatment comes along. Before Afinitor was approved the summer before last, my choices were reduced to hit-or-miss chemo regimens that aren’t targeted to my type of cancer. I am hopeful because I see a lot of great drugs in the pipeline. A good place to find trials, I’ve found is BCtrials.org. I am looking forward to hearing what comes from the San Antonio Breast Cancer Symposium next week.
Until then, I will continue to count my blessings, enjoy the holidays with my wonderful family, and thank God for every day. I hope you all had a great Thanksgiving and Hanukkah (for those of you who celebrate). Until next time!
Some cool news: Miracle Survivors has been chosen to be included in the U.S. National Library of Medicine (NLM) online archive of Web content as part of its mission to collect, preserve, and make available to the public materials that provide information in medicine and public health, and document their histories. The library, which is part of the National Institutes of Health, will make the content available to researchers. Very exciting stuff!
Have you ever had a dream that has come true? I mean literally. I have always been fascinated by dreams and their meaning. I remember having a vivid dream about getting laid off from my job, then it happened. I have had other foreshadowing dreams, as well.
How many of you had a dream about having breast cancer before you were diagnosed? If so, you could be part of a new collaborative study to systematically collect information from women who have experienced warning dreams before being diagnosed with breast cancer. The study is being conducted by Larry Burk, MD, CEHP, a board certified radiologist and Certified Energy Health Practitioner, and Dreams Cloud, a global resource which specializes in gathering, saving, and tabulating a statistical compilation of dreams. Dr. Burk’s interest in this topic started when he heard the stories of two friends, both healthcare professionals, who were warned of their breast cancers in dreams that prompted them to go for breast cancer imaging studies. In both cases, tests confirmed what their dreams had suggested.
The project is now seeking volunteers who have been diagnosed with breast cancer after experiencing warning dreams, to participate in the study and share their dreams from now until Feb. 10, 2014. The study will help to shed light on what aspects of such dreams may be useful to healthcare professionals for the detection of breast cancer in the future.
Volunteers with a proven diagnosis of breast cancer can participate by signing up at Dreams Cloud. Participants, who may share their dreams anonymously, must be willing to sign a consent form, fill out a 19-question survey, and post their dreams on Dreams Cloud. Those dreams will remain in their secure dream journal for life.
Participants will not be asked to share additional medical information, only dream-related information. The results will be presented at a future conference of the International Association for the Study of Dreams,http://www.asdreams.org and published in a scientific journal.
To participate, please visit http://www.dreamscloud.com/en/breast_cancer_dreams_study.
About Larry Burk, MD
Larry Burk, MD, CEHP is a board certified radiologist, a Certified Energy Health Practitioner and president of Healing Imager, Inc., specializing in teleradiology, EFT, hypnosis and dreamwork. He was former associate professor of radiology and director of integrative medicine education at Duke University Medical Center and board president of the Rhine Research Center from 2007-2008. Dr. Burk is the author of the book, Let Magic Happen: Adventures in Healing with a Holistic Radiologist, and a blogger for the Huffington Post. His scientific articles, newspaper columns, newsletters and video blogs are posted at http://www.letmagichappen.com.
About Dreams Cloud
The website provides its members with tools to log their dreams, create dream journals, save them privately or share them publicly or anonymously, and receive personalized reflections on their dreams. The goal of Dreams Cloud is to better its members’ lives and those of the public through its efforts. To learn more about Dreams Cloud, please visit http://www.dreamscloud.com.
Sam Watson, founder of The SamFund
I remember going to the chemo suite the very first time. I had just turned 39, and looking around seeing only people in their 70s and 80s, I felt like the most unfortunate woman in town. Luckily, I did find a support group for young breast cancer survivors called Pink Ribbon Girls. No longer feeling alone, I was shocked to see even younger women than me – in their mid-twenties!
Sam Watson was just 21 and in her senior year at Brandeis University when she was diagnosed with Ewing’s sarcoma. She felt different from cancer survivors in support groups who were decades older than her. And she also felt different from her friends whose lives revolved around finding jobs or going to grad schools. Sam took a year off from school to get treatment, then returned and graduated. She did not graduate from cancer, however. Two years later in 2003, Sam was diagnosed with myelodysplatic syndrome, a precursor to leukemia, which required her to receive a bone marrow transplant. Sam recovered and persevered with the help of family and friends.
That year Sam attended a conference for young adults with cancer and met other women who didn’t have as much support. In addition to emotional devastation from cancer, young adults have added financial burdens, as most are just getting started in the working world. They spend an insurmountable amount on treatment in order to survive, so when reach remission, they barely have money to live.
Wanting to paying it forward, Sam started the SAMFund for Young Adult Survivors of Cancer, dedicated to providing young adult survivors in their 20s and 30s with direct financial assistance, and free online support and education. In addition to grants, which have helped more than 100 people this year, the organization has developed a Webinar series on topics, such as resume writing and other career advice, starting families, and accessing disability and college tuition benefits.
“As the economy deteriorated, our grants have covered more dire needs such as preventing eviction and bankruptcy, and covering medical insurance co-payments so these young adults could remain in their homes and continue receiving follow-up care,” says Sam.
To celebrate its 10th anniversary, the SAMFund is hosting ”An Evening of A Million Thanks,” a fundraising event at Boston’s Hampshire House on Friday, November 22. To learn more about the event and purchase tickets, please visit bit.ly/samfundmillionthanks or call 617-938-3484.
For more information about the SAMFund, visit www.thesamfund.org.
This is on my wall right by my computer so I can be reminded of what is important in life.
I haven’t written much about my spiritual journey and cancer … mostly because I don’t want to turn off readers who may not believe in God or a higher power. But tonight I am giving a talk at New Thought Unity Spiritual Center (where I go), and it has inspired me to look back on how much God has carried me through the crazy roller coaster ride of having stage IV cancer.
Actually, I’m pretty nervous about my talk. I’m certainly no expert on spiritual matters; I can only share my experience. Two things I want people to take away from it are: 1. No matter what our circumstances, we can transform our lives, and 2. With God all things are possible.
Before I was diagnosed with metastatic disease, I remember telling someone going through it, “I don’t know how you do it; I could never handle it.” Now I know I can do more than handle it; my life can be enriched and glorious despite … or maybe even because of the experience. My relationship with God became very up close and personal when I heard I had a life-threatening disease. I know one thing: I can’t imagine rising above my circumstances without God in my life.
As Eleanor Roosevelt said, “A woman is like a tea bag; you never know how strong you are until you’re in hot water.” I believe my strength comes from knowing there is a Higher Power that loves me unconditionally and is guiding me to my highest good. And as the title of my blog indicates, I do believe and have witnessed miracles.
My faith has been tested for sure. I’ve questioned God when scan results turned bad and when dear friends of mine have died. I don’t believe God makes these things happen, but God certainly has helped me come out on the other side of these traumas. I believe my friends’ spirits are immortal and that they have transcended to an amazing plane with blessings beyond our imagination. That comforts me, and helps me make some sense of the tragedy.
God is present when I make treatment decisions, leading me with that “gut feeling” and still, small voice that sometimes comes from other people. God is present in all the wonderful people who have come into my life since being diagnosed with cancer. I believe God is leading me to my higher calling with this blog, book and mentoring I do with other survivors. And I know that everything I give, comes back ten-fold.
It’s been my experience that gratitude makes all the difference. The more I thank God for my blessings; the more come my way. Never in my wildest dreams would I anticipate having a book published by a well-respected New York City publisher. Nor would I ever believe I’d find so many incredible people who have beat the odds of terminal cancer. Each story I hear brings me so much hope, and I’m excited and blessed to be able to share that hope with others. I never take my health and blessings for granted, so I’ve made a commitment to appreciate each day.
When I was re-doing my office, I put up a wall decal, which summarizes my experience: “Faith makes all things possible, love makes all things easy, hope makes all things work.”
Greg Cantwell, a miracle survivor of the deadliest form of brain cancer, dedicates his life to helping other survivors.
I’ve been busy interviewing amazing cancer survivors for my new book, Miracle Survivors, due out next October (or sooner, I hope!). It feels like I have some hidden treasures buried here in my office. So starting today, I’ll start sharing the incredible stories of people in the book.
Nine years ago, at the age of 30, Greg was diagnosed with stage IV Glioblastoma Multiforme, the most deadly form of brain cancer with a median survival rate of 11 months. Not only did Greg beat the heck out of the odds, he’s dedicating his life to helping others with his nonprofit. Greg’s Mission focuses on providing support, hope, education, current resources and awareness to patients suffering from brain tumors, their families and caregivers especially Glioblastoma Multiforme.
I’ll let Greg tell his story:
On October 28, 2004, my plane had just arrived in Minneapolis, where I would begin my new job with Northwest airlines. I checked into my hotel, went out to eat and went to bed for what I thought would be a good night sleep.
At approximately 11:15 pm from what I was told, I awoke, experiencing a grand mal seizure. I couldn’t talk, was barely able to breathe, and was conscious but very confused. I was rushed to the emergency room where the doctors asked me all sorts of questions. The questions were “easy” and I knew I knew the answers, but could not come up with them. I was given a CT scan and next an MRI. Then they said the doctor was calling in a neurologist from home. I thought to myself, “Why?” “This can’t be that serious, or can it?”
The neurologist finally arrived and delivered the news no one wants to hear. “Greg you have a brain tumor.” Two days later, I returned for a biopsy of the tumor. A few days after that, the results were in: Stage IV Glioblastoma. I could tell in the neurologist’s eyes and tone of voice that the chances I would survive were extremely slim. I thought to myself, “Did I hear him right?” “Why me?”
That was the only time I ever felt sorry for myself. From that point on, I was positive and knew I was going to beat this cancer no matter what the statistics or doctors said. My son was one year old at the time. I thought to myself, “I have to be here for him.” “I want to see him go to school on his first day, play sports, have his first girlfriend, graduate from high school, get married” “I have to be here for all that and I am not going to die!” I buckled down for the fight of my life.
I met with my oncologist, who explained I had a 5 percent chance of surviving one year. He gave me three options for treatment. I chose the most aggressive: have surgery and go all out to fight this cancer with everything that medicine had to offer. This option would make me the sickest and require many different treatments, but would hopefully give me the best chance of long-term survival.
I was scared. I had never had any type of surgery before, and now I was having a craniotomy. I had no clue what to expect. The big day finally arrived. Scared and with tears in my eyes, my parents and friends said that they would see me when I got out of surgery, and I was wheeled down the hallway.
I woke up in ICU and was told that the neurosurgeon implanted five Gliadel Wafers into the resected tumor site to release direct chemotherapy over a period of time. After a brief recovery from the surgery I went through six weeks of radiation in combination with Timador, an oral chemotherapy drug. After I completed the radiation therapy, I had a couple weeks to rest up before starting my regular chemotherapy regime. Over the next 12 months, I went into the hospital for three consecutive nights each month where I would receive two types of chemotherapy, Cytoxin and Etoposide, then a rest period, then the same chemotherapy again.
The day before my release from the hospital, I went to interventional radiology where a catheter was threaded from the artery in my groin up to my brain to release Carboplatin, another chemotherapy drug. This procedure was risky, as well (chance of blood clot, infection or stroke), but I knew it would increase my chances of long-term survival.
Textbooks and statistics showed a 100% chance the tumor would grow back. Thank God, to this day, it hasn’t. Currently I have MRIs every four months and they have been clear.
I am currently providing support to 600 people around the globe. I also travel around the country and world attending conferences and speaking about my experiences with this devastating disease. It is my goal that everyone will have the opportunity that I didn’t – the chance to talk to a survivor.
For more information about Greg and his charity, visit www.gregsmission.org.
Image Courtesy of Pixabay
Today’s guest post by Virginia Cunningham is a good motivator for me and many of you out there dealing with the effects and aftereffects of treatment. It’s easy to say, “I’m too tired to exercise.” Or as it is here today, ” The weather is too crappy to go out.” Lucky for me I have a husband who motivates me to walk with him every evening no matter what! I also go to a yoga class at The Cancer Support Community. I know I can always do more, but when I do, I’m usually more energized and even my mood improves. I’ll turn it over here to Virginia, who’ll tell you why exercise is a must for us!
There’s no question that cancer treatment, whether it be surgery, chemotherapy or some other form of radiation, is tremendously hard on the human body. Patients will often feel far worse as a result of the treatment than from the cancer itself, usually experiencing fatigue and nausea more often than before.
However, there is a fair amount of research that suggests exercise might be not only safe, but a beneficial way to improve your health and the quality of life during and after your cancer treatment.
One of the biggest hurdles that those undergoing cancer treatment face is a steep drop in energy and a rise in overall fatigue. This is usually a direct result of the treatment, and can often have little or nothing to do with the cancer itself, as many types of cancers are initially without significant symptoms.
Becoming idler doesn’t address this issue, and could possibly even cause you to become more fatigued, simply because you’re not getting out and being active. In general, an inactive person risks losing muscle mass, which, in turn, can slow down the rate of metabolism. As you lose muscle and gain fat, you’ll only end up decreasing your energy levels even further.
If you’re able, keeping up with a daily exercise routine will help you avoid this cycle by boosting your energy levels, and can even have positive effects in terms of actually helping to combat your cancer.
In the short term, staying active will help you maintain the energy you’ll need to get you through the day, as well as through future treatments. If you can keep it up, you’ll also be setting yourself up to be stronger once you successfully come out of treatment, and you’ll likely have a more positive outlook when it comes to cancer and overall health.
Especially during the early stages of your treatment, your immune system will be much weaker in having the ability to fight off illness. Therefore, it is very important that you do whatever you can to support it by taking supplements, particularly Vitamin D and foods that contain several antioxidants (vitamins A, C and E).
Your body’s ability to fight cancer is often predicated upon its strength and how well your body has been maintained for when you do ultimately have to begin treatment.
The bottom line is that the stronger you are, both physically and mentally, the more successful you’ll likely be in getting through treatment while maintaining that strength. In many cases, those who stay active before, during and after their cancer treatment are less likely at risk of recurrence or developing a new cancer unrelated to the original diagnosis.
There is even a fair amount of research and consensus among medical professionals that exercise can reduce the risk of developing cancer in the first place.
If exercise is one of your best weapons against cancer, it doesn’t make sense to shelve it while you’re undergoing treatment.
In some cases, patients might have to adjust the intensity levels at which they exercise, particularly if they’re doing so in the following days after a treatment. If your body is telling you that it just doesn’t have the strength to exercise or keep up with a certain intensity level, go with a lighter activity and work your way up until you become stronger.
This could be difficult for those who were previously active before their diagnosis, but those people need to keep in mind that they’re effectively rebuilding their body and strength, so taking it slow is recommended.
Helping your Body
At almost any point in life, exercise is going to be beneficial to your health in a variety of ways. While you may not feel your very best every day, you should try participating in at least some kind of physical activity, and avoid giving into the fatigue and low-energy levels you might expect as a result of your treatment.
The more you can help your body in that situation, the better your short and long-term prognosis will be.
Virginia Cunningham is a freelance writer and health enthusiast in the Los Angeles area. She highly encourages those who are combating cancer to include at least some form of physical activity in their daily lives, as it will only help them become stronger in the long term.
Major tweeting to be had on Monday!
I’m doing a quick blog post to let you know that I am going to be on a panel of breast cancer bloggers and advocates for a Twitter chat tomorrow, Monday, Oct. 21, 12 p.m. Pacific Standard Time/3 p.m. Eastern Standard Time. If you’ve never been on Twitter chat, it’s basically an online, real-time discussion that’s organized by a moderator about a specific topic. During the chat, you can share your personal stories, ask questions and get advice from other breast cancer survivors. So if there’s something you’d like to ask me, here’s your chance!
The Twitter chat is hosted by Causes, which supports petitions for a variety of causes. Recently I signed a petition demanding more funds for metastatic breast cancer research. The site is now hosting a campaign asking people to share stories, photos and videos of yourself or a person you love who has experienced breast cancer. I decided to participate in this campaign and share my story because I believe there needs to be much more awareness of metastatic breast cancer.
So let’s have our voices be heard! Join the Twitter chat by tagging tweets with #SurvivorStory. If you’d like to share your story, click HERE and click on “Pledge.” Hope to chat with you tomorrow!
Only 14 shopping days left for Pinktober!
Yes we are a materialistic society. Christmas has long been a marketing frenzy that starts even before Halloween. The same thing can be said of October, Breast Cancer Awareness Month. It seems to begin in late August and September. The pink comes out in almost every item imaginable: pink pepper spray cans, pink Halloween costumes for your doggie, pink blenders, and worse yet cosmetics, perfumes and cleaning products that contain toxic chemicals that cause cancer! (Go to Breast Cancer Action’s Think Before You Pink site to learn more)
A lot of companies are making a lot of money capitalizing on Pinktober, but either give a very small amount or even nothing to breast cancer awareness or research. It’s mind-boggling, I know. So other than buying my breast cancer research postage stamps, I tend to shy away from pink products unless I am very familiar with the organization and know it will be put to good use. Another thing I can do is to give a direct donation to causes close to my heart. Here are some that I have supported in the past and hope you will, too:
Metastatic Breast Cancer Alliance: This is a new organization that just launched that is a collaboration of many breast cancer organizations to raise awareness and research funding for metastatic breast cancer. I think this is long overdue and believe cooperation gets us farther than division (look at the government shutdown as an example). I have donated to several of these organizations in the alliance, and it’s always been difficult to choose which one was best. Their website doesn’t have anything about donations, but probably it’s too new. Go to their site and see the organizations involved and choose which one you’d like to support.
Camp Kesem: My daughter Chrissy and many kids like her who have/had parents with cancer have enjoyed a fun-filled week of overnight summer camp sponsored by college students around the country. These kids work their butts off all year to raise money then pour their hearts out to the kids during a magical week of camp. LIVESTRONG has supporting the opening of several new camps across the country, and it is growing by leaps and bounds. But they still need support to keep it going.
The Karen Wellington Foundation: When I was at one of my lowest points in my breast cancer journey, this organization sent me and my family on a trip to Longboat Key, FL. It was an amazing and much-needed trip for all of us. The foundation was started by Kent Wellington, whose travel-loving wife passed away from breast cancer. In addition to funds, they are in need of people willing to donate their vacation homes or time-shares for one week a year to a breast cancer survivor and her/his family.
Pink Ribbon Girls: When I was first diagnosed with breast cancer, I felt like a freak of nature. I was 39 years old and could not relate to older cancer survivors. I started attending and soon served on the board of Pink Ribbon Girls, which helps and supports young breast cancer survivors. Today, they help survivors of all ages through their Simply Fight and No Age No Stage programs, which provide meals, housekeeping and other services to breast cancer survivors undergoing treatment.
Annie Appleseed Project: Founded by Ann Fonfa, a miracle survivor in her own right, Annie Appleseed’s goal is to bring complementary, alternative therapies to the mainstream through conferences, education and advocacy. I’ve gone to their conferences for several years and have learned so much about ways to keep myself healthy while going through treatment. Check out their website; there is a plethora of good information there.
The Pink Fund: No matter what side of Obamacare you’re on, the truth is that many people go bankrupt trying to pay astronomical medical expenses. Founder Molly MacDonald knows this from personal experience. That is why she formed the Pink Fund, which pays for necessities like utilities and rent for up to 90 days for breast cancer patients during their treatment.
There are other organizations I’d like to recommend, but I’m running out of space! Feel free to comment and share other great causes to support during Pinktober.
This is what I look at from my computer in my home office.
It seems like almost every day lately I hear of a breast cancer sister who has died before her time. It creates a stark contrast to some of the ridiculous breast cancer awareness shenanigans like October 13′s Take Off Your Bra Day. The image is of a “sexy” woman with her bare back towards us waving her little bra in the air. With a brazen lack of knowledge and empathy, someone had the wise idea of having it the same day as Metastatic Breast Cancer Awareness Day. Don’t get me started. I will refrain from ranting.
I mourn each passing, and it would be easy for me to be in a constant state of anger and depression about the unfairness of it all. That would not help me or the people I support. I must carry on and live with hope.
Thank God I am in the process of writing my new book, Miracle Survivors. Almost every day I get to interview amazing people who are beating the odds of advanced cancer. Today I spoke with Glenine Gregory-Ryan, a stage IV breast cancer survivor, who was told she had months to live back in 2001. She has shown no evidence of disease since 2002. Glenine has a marvelous sense of humor, an infectious laugh. and an unstoppable determination to be around for many more years to come. And then there’s Greg Cantwell, who was diagnosed in 1994 with glioblastoma multiforme, the most deadly of all brain cancers with an average life expectancy of less than 1 year. He is doing great and with no evidence of disease and has created an organization to help fellow survivors.
There are so many deaths, but there are people who make it. Also people are living longer with metastatic disease thanks to new treatments. I’m an example of that. I think people need to hear that it’s possible, especially when doctors and statistics tell them otherwise. Everyone is different, and some people do everything right but have really hard-to-treat cancers and eventually die. But just to know there are people out there surviving and thriving offers a glimmer of hope. If there is a 5 percent chance of survival; who’s to say I can’t be part of that 5 percent?
So I’m focusing on the future and assume I’ll be around for a while. I painted and reorganized my home office, so I’ll have a nice place to work on my book. Last night, my husband and I went to a college preparedness conference to help plan for our daughter Chrissy’s journey toward higher education. I’m focusing less and less on preparing for death and more on the present and future. Besides we already have our burial arrangements covered. I choose to believe there is hope.
Oh shoot! It's breast cancer awareness month! Yes this was actually sold by Smith and Wesson as a breast cancer awareness gun ...
Pinktober is upon us! I like the color pink, and I do appreciate all the attention breast cancer receives. I belong to a wonderful organization called Pink Ribbon Girls that supports people going through treatment, and belong to other pink organizations. I know I am “lucky,” if you can call it that , to have a disease that garners so much attention and support.
But for me and my fellow metastatic (stage IV) sisters and brothers, every month is breast cancer awareness month. And for many of us, we may need something else pink – Pepto Bismal – to get through it. We live it every day and many of us, like me, aren’t bald or even in the chemo chair that much (I’m on an oral chemotherapy). We don’t get the attention. So when you’re out and about, remember those of us who may not look like we have anything going on, but are living our lives every day with the knowledge that it quite probably get cut short. We need a cure, not awareness. We are aware, very aware …
I don’t think the majority of the population is aware of metastatic breast cancer – or other metastatic cancers, really. During Pinktober, we get ambushed by all this feel-good pink merchandise and success stories of people who caught it early and treatment is behind them. “Get a mammogram!” “Feel your boobies!” It’s the battle cry and the promise that if you just catch it early enough and wait five years without it coming back, then you’re hunky dory. Oops, am I being snarkastic here? I’m not dissing early detection. It does help save lives. I’ve just had too many wonderful women friends pass away from cancer and many of them caught it early like me.
For those of you new to my blog and my story, I was diagnosed four days shy of my 39th birthday. I was deemed too young for a mammogram, but I did find out by doing a self-breast exam. I always had lumpy boobs, but this lump was different. I was diagnosed with stage II cancer, no lymph node involvement. I was told my prognosis was excellent. I had a lumpectomy (and no, that is not the reason it came back), heavy-duty chemo that landed me in the hospital for five days with dangerously low white blood counts (and a bald head and body) and 30 days of radiation. Then I was sent along my merry way with a little pill called Tamoxifen and told that after five years it was highly unlikely it would come back.
Well it did – five years and two months after I completed treatment, to be exact. It didn’t come back in my breast; it came back in my armpit, liver and lung lymph nodes. No one told me to check my armpit. When I found out, I lamented that I didn’t get a mastectomy. I was told it wouldn’t have mattered because my breasts were clear.
Because October 13 is Metastatic Breast Cancer Awareness Day, I wanted to go over some common misconceptions about breast cancer, especially metastatic breast cancer:
- With the fairly rare exceptions of some people I feature here and in my book, treatment is never over. We are on treatment until it stops working, then we try another. Sometimes we can achieve NED (No evidence of disease), but a lot of times it is fleeting. There are many treatments that don’t cause hair loss or at least for some. Everyone reacts differently.
- Because we’re in it for the long haul, we need friends and family to be there with us for the long haul. Just because many of us may not look sick; it doesn’t mean we aren’t.
- A majority of us are NOT dying of our disease … well at least at the moment. Of course it depends on how advanced it is. I like to think of it as living with a disease. I’ve been living with stage IV cancer 5 1/2 years. Yes, I’m like a kid who counts 1/2 years.
- It’s estimated that 20 to 30 percent of early stage breast cancers will metastasize. I know that’s scary, but it’s another reason we need to be fighting harder to find a cure for this disease!
- There is hope. We are living longer, thanks to new targeted drugs and people taking better care of themselves in body, mind and spirit. According to www.patientresource.com, “Studies have shown that new treatments have led to a 30-percent increase in the average survival for women with metastatic breast cancer. In fact, survival now varies widely, with some women living for 20 years or more after a diagnosis of metastatic breast cancer.”
I’ll end on this hopeful note because I know personally the power of hope. I am grateful for new treatments, for all the wonderful people I’ve met from this journey, and for life itself. This weekend is Homecoming for my daughter. I was afraid I wouldn’t live to see her enter high school. She just wrote a beautiful paper for English class saying what a wonderful mom I am. Wow, that’s priceless! Thank you all for being there for me for the long haul. I love you all.
For more information about stage IV cancer, go to these sites: Metavivor, Metastatic Breast Cancer Network, or Google “Metastatic Breast Cancer.”