A Letter to Family and Friends about My Journey – Part III

Pink EelephantLetter #3
November 26, 2010
An email to my friends and family

Every year, for as long as I can remember my family makes turkey soup the day after Thanksgiving. While Thanksgiving day itself is great, surrounded by friends and family, as a young girl I was secretly most excited about the turkey soup. As I write this to all of you, my own soup is simmering on the stove as the remnants of the delicious turkey Jeff cooked yesterday slowly turns into a heavenly concoction we’ll enjoy for days to come.

Isn’t that just the way life is sometimes? You spend hours, sometimes days, on a dinner and in the end, the bones and core of the turkey is the best part. I feel these days life is the same way. We spend so much time trying to make everything we do so perfect and precise, and in the end the core of our beings is what we all love so much about each other.

Thanksgiving, of course, is not ALL about food (though some might argue that point), it’s also about being thankful for what we have and those we love.

I’ll be honest, I REALLY had to push myself to find things to be thankful for after the year we’ve had. But once I let my mind process the things I’m unhappy with (like CANCER), I found I couldn’t stop listing things I am thankful for. It is funny how that works. Life can be so harsh, but it can also be sensational and incredible. I find I have to allow myself to accept both parts of life, so I can accept all the goodness and love that surrounds me.

So tonight, as my turkey soup simmers and fills our house with warmth, I wanted to write and let you all know I am so incredibly grateful for each and every one of you.

I know many of you are fighting your own battles this holiday season. Please know I think of you every day – and when I see a beautiful sunset, a family walking hand-in-hand, or even just a dog playing in the sunshine – I will think of you and send all that positive energy toward you.

I also have another bit of information to share that I, and my family, are very thankful for. My Pink Elephant and I have found an AMAZING oncologist. This is the doctor that will be by my side for the next five years as we work together to minimize the chances that my cancer will ever come back. She is an incredibly smart, forward-thinking woman … and she has determined I do NOT need to go through chemotherapy.

No, I am not kidding.

(Visualize dancing Pink Elephant here)

Dr. Oratz, my new oncologist, insisted on conducting a test called an Oncotype DX Breast Cancer Assay. This test looked at a set of 21 genes from my actual cancer tumor and provided specific data on: (1) the likelihood of my specific type of breast cancer returning and (2) whether I’d be likely to benefit from chemo to lower my chances of it coming back. The test concluded that chemo would only have a minimal benefit and my particular cancer had a lower chance of returning. NO CHEMO FOR JEN!!!! Hooray!!!

But, (and there is always a “but” with cancer) … my specific cancer LOVES estrogen (hormones), so my treatment will involve the use of drugs that are specifically designed to cut off my cancer cells’ ability to connect to estrogen instead of trying to kill them with chemo.

My targeted hormonal therapy will begin on the Monday after Thanksgiving (three days from today). It will entail shutting down my ovaries to stop my body’s production of estrogen for two years (starve the cancer) with a drug called Zoladex, while also taking a drug called Tamoxifen for five years so cancer cells can’t feed off the estrogen in my body. After two years, I will stop Zoladex, but continue taking Tamoxifen for another three years to STARVE any potential cancer cells that might still be in my body, so they’ll die. Take that cancer! There is a big fat Pink Elephant kicking your butt!

(Jen calming down her Pink Elephant)

So, as Thanksgiving comes to an end, and we all begin looking toward Christmas (and ALL that comes with the holiday season) I hope each and every one of you has your own turkey soup filling your home tonight with hope and warmth. I hope you all know how thankful I am for you and all you’ve given me this fall.

Love always,
Jen & her Pink Elephant

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Categories: YSC SYNC - Survivors

Beyond the Hot Flash: What To Know About Early Menopause

Click image to download flyer.

When you get diagnosed with breast cancer at a young age, you receive a significant amount of information about survival, surgeries, chemotherapy and radiation. But, you may not get a lot of information about early menopause, which can occur as a result of that chemotherapy. Induced menopause isn’t exactly the same as “natural” menopause, and there are some unique issues regarding fertility, sexuality and treatment of menopausal symptoms that arise in young women with breast cancer.

Induced menopause happens much more quickly than “natural” menopause, as the chemotherapy disrupts the normal function of your ovaries. Because the change in hormone levels is so sudden, the symptoms of induced menopause tend to be more severe than those experienced by women going through natural menopause due to age. Symptoms can include hot flashes, night sweats, vaginal dryness or irritation, mood changes and sleep disturbances, among others. Of course we can’t use traditional hormone replacement therapy to alleviate these symptoms, but, the good news is, there are other ways we can safely help.

A major issue with induced menopause is loss of fertility, but, thankfully, in this day and age, we can do something about that! The natural decline in fertility that occurs with age varies wildly among women, and I’ve had many patients sadly surprised to find themselves unable to get pregnant (even with fertility treatments) in their late 30s. It never dawned on them that their ovarian function might already be decreasing, and, by the time they tried to get pregnant, it was too late. When you KNOW your ovaries are going to shut down on a specific time frame due to chemotherapy, the reproductive endocrinologists can now harvest eggs prior to this and store them for later use, which is pretty amazing.

I’m going to talk about all this and more on Thursday, August 16, during a webinar about early menopause for YSC. I’ll discuss what it’s all about, what to expect and what you can do about it. The most important thing to know is that we CAN do something about it — talk to your ob/gyn before you start your chemotherapy or if you are experiencing any menopausal symptoms — we’re ready to help you!

Beyond the Hot Flash: What To Know About Early Menopause

Thursday, August 16

8:00–9:00 p.m. ET

Link to register: https://www1.gotomeeting.com/register/827527064

Or call: 877.YSC.1011 (877.972.1011)

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Categories: Guest Bloggers

Networking for Women Living with Metastatic Disease

YSC’s MetsLink Support Group Calls, designed to address the specific concerns of young women diagnosed with metastatic breast cancer, draw participants from every walk of life. Some of the women are single, others are married, some work, others may collect some sort of disability benefits. The ages of the women who participate range from those in their early 20s on up. Topics include, but are not limited to hopes and fears, work, children, communicating with friends and family and living with ongoing and changing treatment.

In my more than four years of facilitating these monthly support group calls, women from all over the U.S. and Canada have joined the calls. Despite the obvious social and geographical differences, it’s always extremely interesting and educational to hear how women from various medical settings are being treated for their metastatic disease. Though there is a large arsenal of medications for the treatment of breast cancer, women do not follow an obvious schedule of treatments. Those that are hormone sensitive may start with an oral anti-estrogen medication, while others may decide to enroll in a clinical trial which utilizes intravenous (IV) chemotherapies or targeted drugs. Still others start with a standard IV chemotherapy. While on the call, we spend time listening to which treatments the participants are receiving and discussing side effects and their management of these. Great suggestions have been exchanged, while anxieties are lessened as the women hear that their physical issues have been, or are being, experienced by others.

A common denominator for each call is the need for participants to feel as if they are part of the group, as many of our callers have never spoken to another woman with metastatic breast cancer prior to joining this “support group without leaving home.” Though we don’t see one another as we do in face to face groups, what’s always astounded me is the kindness and generosity shared by virtual strangers on these calls. Women are eager to talk to each other, hear one another’s story and offer compassionate words.

Questions are always encouraged and many focus on ways to cope with disclosing information to family, friends or employers, as well as managing anxiety before a scan. We’ve discussed complementary therapies like acupuncture, supplements and yoga. The “roller coaster ride” of having a chronic illness with ups and downs always elicits conversations about managing a variety of emotions that come with each day. Women talk about the multiple stressors they experience with this diagnosis including disappointment with loved ones, body image issues, intimacy, role changes, challenges to relationships and managing the sense of uncertainty.

As a clinical social worker in a large urban cancer center, I enjoy these monthly calls enormously and find the group often runs itself. Participants appreciate the opportunity to come together, many of whom choose to join our calls month after month. When a woman is able to hear she is not alone and her feelings are shared by others, the sense of community widens and her stress might seem more manageable. Women frequently exchange contact information and resources. Though there is often a sense that there are many women out there who feel isolated, I’m comforted by the thought that, one-by-one, we’re reaching out and making a difference with our MetsLink networking calls.

 

Upcoming Calls:
August 14 – 8:00 p.m. ET
Sept ember 11 – 8:00 p.m. ET
October 9 – 8:00 p.m. ET
Nov ember 13 – 8:00 p.m. ET
December 11 – 8:00 p.m. ET

National call-in number: 800.804.6968
International call-in number: 647.723.7260
Access code: 0284559

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Categories: Guest Bloggers

What Do Mammography Guidelines Mean for You?

As women, we are inundated with new information on healthy living and disease prevention. We take this all in, but may still be asking: What vitamins should I take? How often should I floss? Does that new mole look strange? And, as we all know, our breast health is no different. You’ve probably heard that you should do a self breast exam monthly and talk to your doctor about annual mammograms when you turn 40, if not earlier. The medical profession followed those guidelines for years because, after all, isn’t early detection the key to cancer prevention?

It’s no surprise then that the U.S. Preventive Services Task Force* (USPSTF) 2009 report on mammography screening caused quite a stir and a lot of confusion. Based on its review of the most current research, the panel revised previous guidelines so that mammograms are now recommended every two years beginning at age 50 for women of average risk. It also questioned the efficacy of doctors showing women how to perform self-breast exams as a method of early detection.

While the USPSTF recommendations on screening mammography, clinical breast exam and self-examination do not directly impact the young breast cancer survivors served by Young Survival Coalition (YSC), we always carefully review recommendations of such significance. Although mammograms are not perfect and often produce false positives in young women, the evidence has clearly shown that they are effective in older women and should be available for all women for whom such screening is appropriate. Further, the Task Force’s recommendations deal only with average-risk women, not screening in higher-risk women and looking at residual breast tissue of young and old survivors.

As for YSC’s population of young women, the debate reminds us that better screening tools are urgently needed for all risk levels. Mammograms have been found to be an ineffective screening mechanism for women under 40 because their breast tissue is dense. And while over 13,000 women under 40¹ in the United States will be diagnosed with breast cancer this year, there is still no effective screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly lower than for their older counterparts, and the disease is often detected at later stages and is usually more aggressive.

Taking all of that into consideration, medical professionals, researchers and advocates remain frustrated by early detection of breast cancer for all women and specifically those under 40. Accordingly, YSC urges young women to do what YOU can to become familiar with your breasts and bodies. Know your own personal risk factors for breast cancer, be aware of the signs of breast malignancies and promptly consult with your health provider if you have any health concerns. You are your own best advocate!

¹American Cancer Society, Surveillance Research 2011.
*The USPSTF is a panel of independent experts who analyze the most current research on evidence-based prevention and establish guidelines based on this review: http://www.ahrq.gov/clinic/uspstfix.htm.
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Categories: Guest Bloggers

We Are Part of a Larger Community

There are over a quarter of a million women living in the United States today who were diagnosed with breast cancer before their 41st birthday. This is a lot of young women who have heard the words, “You have breast cancer,” way before they ever thought they could get it. However, when you consider ALL cancers according to Surveillance, Epidemiology, and End Results (SEER) data put out by the National Cancer Institute (NCI), it is estimated that more than 1.6 million people will be diagnosed with cancer in one year, and of that awful total, 9.2% will be under the age of 44. Meaning around 150,000 young adults and kids will be diagnosed with cancer in one year! This just plain sucks!

The point is, while YSC is a very special community just for women who are (or were) diagnosed with breast cancer before their 41st birthday, a larger young adult cancer community exists and we all work together to support each other as we learn to live with cancer.

While the challenges that come with facing a breast cancer diagnosis might be different, the issues around nutrition, careers, insurance and fertility are felt by all young adults no matter what type of cancer they are diagnosed with.

As a young survivor myself, I’ve learned a great deal from this larger young adult cancer community, since being diagnosed two years ago. I consider myself a part of the Stupid Cancer family and have learned so much from this amazing group of young survivors across the country. I attended the OMG! Cancer Summit for Young Adults this past spring in Las Vegas and was reminded how much we all have in common as we struggle to find our “new normal.”

For those of you who live on the East Coast, Stupid Cancer is hosting OMG2012/east, a smaller, one-day conference in New York City on September 15. It’s free for all young survivors but space is limited, so if you are interested in taking an active role in our larger young adult oncology community, this is a wonderful way to be reminded that you are not alone (which we all need every once in a while!). There are a lot of us out there striving to survive with style, determination, strength and even a sense of humor.

If you are planning to attend the OMG2012/east, please shoot me an email with your mailing address, so we can send you a YSC pin to wear so you can represent all the young women with breast cancer in our community!

YSC is about ensuring that all young women diagnosed with breast cancer are empowered, educated, and supported throughout every phase of their experience. I believe that in order to do this properly, I have a responsibility to encourage everyone that wishes to be a part of the overall young adult cancer community to do so.

We are all in this together, as we try each and every day to define and navigate our “new normal.”

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You Want Me to Eat THAT???!!!

“What in the world are we supposed to eat while we train to ride 200 miles?” I’ve heard this question time and again from the many women I know who are doing Tour de Pink for the first time to take their bodies back from cancer.

I had the unfortunate experience of learning what it felt like to have my body run out of fuel on a bike ride recently. This experience is often referred to by cyclists as “bonking” or “hitting a wall.” No matter what cute name you give it – it sucks.

So, this is how I understand it: We are supposed to eat a big breakfast before we go on a long ride, which is counter-intuitive from everything we were taught as kids. Remember having to sit by the pool and wait an hour after eating lunch? And now they’re telling me I’m supposed to eat a large meal before I exercise … Ok, strange, but I’ll go with it.

You are also supposed to eat EVERY HOUR. Deciding to eat every hour would be fine with me if I could stop and enjoy a nice meal. But that’s NOT what this means. You are supposed to eat something WHILE you are riding, every hour. Very different.
Again, it really contradicts everything we learned as children. But, I don’t want to repeat myself.

I’ve also found that everyone seems to have a different magical food choice for these on-the-go meals. Some people keep it real with a granola bar they keep in their jersey pocket. Other people go to the extreme with this substance called GU. It comes in a pouch and has the consistency of slime – and you’re supposed to eat it willingly every hour.
I’ve been told that after a long ride you should eat protein and drink a lot of water. I understand a beer is also fine since it has calories, which makes me happy.

Back to my unfortunate experience of learning the hard way the importance of keeping your body fueled …. I “bonked” on a 30-mile ride and, thank God, was surrounded by experienced riders. I had no idea what was happening to me … the next thing I knew they were shoving this GU stuff down my throat. I wasn’t happy at first, but then I felt my senses starting to come back. I thanked the owner of the GU for sharing his magical jello shot with me.

My plan is to try the GU Chomps since the chomps seem to be more like eating gummy bears (more my style) … and maybe a granola bar … ‘cause going old school is just more fun sometimes.

Any other ideas on fuel for us newbie cyclists?

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Categories: Taking my Body Back

A Letter to Family & Friends About My Journey – Part II

Pink EelephantThe following is the second of four letters that I wrote to my friends and family immediately following my breast cancer diagnosis and surgery:

Letter # 2
October 25, 2010
A letter to my friends and family

Please forgive the long lapse since my last update. Life seems to be happening so profoundly fast these days that I lost track of time. Blame it on the pink elephant!

A special thank you to all of you who have emailed, called, texted and written to check in during the past month. It is your continual support and love that makes every day that much easier. Each day I feel as if I am taking each step with you all cheering “YOU CAN DO IT … KEEP GOING!” Some days the steps are tall and steep and all of you together raise me up so I can reach each step and keep going. Thank you from the bottom of my heart.

During the past two months I have been faced with challenges, fears and emotions that I didn’t expect. But with each step, something profound always appears that takes my breath away – right in the midst of the chaos. Some blessings or occurrences I might have otherwise missed. Here are a few:

•    I’ll never forget my mother sitting next to me in bed talking to me for hours and hours over the last six weeks … it’s become one of my favorite parts of this journey.
•    The generosity of total strangers that has shocked me day after day – bringing me to tears of happiness and restoring my faith in humanity (too many acts of kindness to list them all).
•    The strong and magnificent breast cancer survivors I’ve met who give me hope and fill me with strength – these women are my true angels.

On the morning of October 7, (2010), I went in for my second (and unexpected) surgery to remove seven more lymph nodes from under my right arm. After only 48 hours of being surgical drain free, I was home with another surgical drain (ugh!), more stitches, and back in bed – with a 400-pound pink elephant sleeping comfortably on my chest.

A week later we happily learned that all seven lymph nodes came up negative for cancer!!! Yahooooo! We also learned I was negative for the BRCA gene mutation, which meant my mother and I being diagnosed seven months apart doesn’t appear to be caused by a genetic mutation (well, at least one that’s currently been identified). Go figure!

So what is next for my pink elephant and I??? Are we done??? Unfortunately it does not appear so.

Since two of the lymph nodes from my first surgery tested positive for cancer, I have to begin a “treatment regimen” to ensure that (1) the cancer has not spread to other parts of my body and (2) that it never comes back! Yes, it means the other “C word” … CHEMO!!!!

I think chemotherapy is almost as feared and misunderstood as the word cancer. So, over the last two weeks I have been educating myself and gained a basic understanding of what is ahead of me. I met with one oncologist (doctor who determines and manages your “treatment” from start to finish) and am meeting with another one next week, for a second opinion. My guess is that sometime around the end of November I will begin chemo … but this won’t be settled for another week or so.

Overall I am doing fine. Healing nicely and getting stronger every day. Jeff and my parents continue to be rocks of encouragement, love and support, which I’d be lost without. I’m not going to lie – some days are really rough – but who in life doesn’t have tough days?

So, that’s the update. No final plan as of yet, but it’s coming together. My pink elephant and I continue to dance together every day – sometimes she leads, sometimes I do – but we have bonded and will continue to move forward.

I’m not sure where this road will lead me, and in all honesty I am still trying to figure out how I even ended up on this road in the first place … but your road is your road, and life is about turning lemons into lemonade … all while carrying a 400-pound pink elephant.

Love,
Jen

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Categories: YSC SYNC - Survivors

Cycling Can Be Beautiful

As a new rider just at the door of the house we call cycling, I currently only have one cycling outfit.

This is an issue since I’ll be riding for three days in a row for Tour de Pink. Obviously, I need more than one outfit … but what to buy? And why is it so expensive?

During the last six months I’ve been asking all the other female cyclists I meet what they wear. I’ve heard a variety of responses. I’d thought I’d share a few recommendations, for those of you experiencing the same conundrum:

Terry (http://www.terrybicycles.com/) has become one of my favorite sites to browse through. It’s a Vermont-based company dedicated to getting more women riding bicycles — comfortably, safely and beautifully. Beautifully is the key word … let’s be honest, bike shorts are a challenge for most women. I purchased my riding “skort” from this company, and I’ve been incredibly happy with it. Thank God, since it’s the only thing I own!

Sheila Moon (http://store.sheilamoon.com) is another very cool website. It’s based in San Francisco, so of course it’s cool (I grew up in the Bay Area)! I have not purchased anything from Sheila Moon yet, although I have my eye on a few skorts I’ve seen on its site.

Team Estrogen (http://www.teamestrogen.com/). Besides having a great name, it has a great slogan, “Where style meets the road.” Come on — how cool is that? It has a huge variety of skorts and cute tops I’m looking at. It’s not 100% cycling, so I’m a little cautious about ordering skorts from the site since the chamois pad in the shorts is soooo important.

Bike Jane (http://shop.bikejane.com) is also a good one to bookmark (says the girl who owns ONE biking outfit). I like its selection and am pleased not to see those awful shorts everywhere.
These are my suggestions — does anyone have any others?

I am going to have to cough up some cash soon and start buying at least two more pairs of skorts and cycling jerseys … and probably another pair of socks!!! That’s all I need and then I’ll be rolling in style … my own style.

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Categories: Taking my Body Back

A Letter to Family & Friends About My Journey – Part I

Letter #1
October 5, 2010
A letter to my family & friends

Pink EelephantPeople have said for centuries that if you look hard enough you will see that the world is made up of love, hope, happiness and amazing blessings every day. I have always tried to be a person who looks for those small moments (when they randomly pop up). Until one week ago, that is how I would have defined myself. That’s all changed.

After being diagnosed with breast cancer at the age of 36, I’d now define myself as someone who has been blessed to see the world in a completely different way. I now know that this world is made up of the most amazing, kind, loving, brave and brilliant people, who perform blessings and acts of kindness ALL THE TIME. These are not small moments that pop up (as I once believed) — they are everywhere, and they are for everyone.

Over the last week, so many of you have emailed, called, texted, emailed again, called again, texted again — over and over — with a single message, “We are thinking of you, Jen.”

I felt every single one of you — every single time. I have never in my life felt humanity wrap itself around me like it did (because of all of you) and say “you’ll be okay” … and because of that and because of all of you … I am doing well.

I came home from the hospital after my bilateral mastectomy surgery last Wednesday around noon with a huge appetite (not surprising) and went back and forth between naps, eating, small outings outside and more naps. The best way to describe how I felt during the past week is as though a huge pink elephant was sitting on my chest with no intention of leaving, nor losing any weight.

But, thanks to my wonderful parents and my beyond-amazing husband … my pink elephant and I began a dance of recovery together. Some days the pink elephant had the upper hand, and some days I did … but we moved slowly together in unison.

Today is an important day — today is the day that my drains were taken out. For those of you who don’t know what surgical drains are — God bless you and I pray you NEVER find out. For those of you who do know — say a cheer out loud for me because all I can do is cry in happiness that those God-awful things are gone. (I think the pink elephant even did a celebratory dance today.)

And to all of you — I could feel your wishes, prayers, cheers and words of encouragement from all around the world. For that, I will be eternally grateful. I am doing well. I feel okay. The pink elephant and I have become friends.

I love you all, thank you.

If I can leave you with one thing … look for those blessings. They are everywhere … trust me … I can see them now.

Love,
Jen

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Categories: YSC SYNC - Survivors

We Are 1 YSC

1 YSC: Face 2 Face.It is important to remember where you come from — but it should not define who you will be. This is a statement that is easy to write — but much harder to accept when faced with change.

YSC conducted an Affiliate Summit this past weekend that included representatives from all of YSC’s affiliates around the country.

I was in awe of these outstanding men and women — who have dedicated their lives to the success of YSC. So many of them have built strong communities of volunteers in their hometowns to support our cause. YSC is a national organization because of their hard work, dedication and drive.

However like all great things, YSC needs to evolve in order to be successful and keep up with the changing times. We are expanding in order to reach more young women affected by breast cancer throughout the country and ensure they feel supported and empowered. No matter where they live. No matter who they are. No matter what they do.

No one will ever forget the outstanding work our YSC volunteer leaders have done … their efforts will serve as the foundation for what we will do going forward.

Each of us has a voice and a passion for our movement … and the YSC volunteers that I’ve met around the country are some of the smartest, most caring and compassionate people.
If you have volunteered for YSC over the years in ANY capacity … I thank you.
And for all of the amazing volunteers who participated in the Summit this weekend … I thank you.

We all have a choice in how we look at opportunities presented to us. I can’t wait to see where the volunteers take the future of YSC … based on what I witnessed this past weekend, I think it will exceed my greatest expectations.

Remember: the past doesn’t define us … it only acts as a guide as we choose who we will become together.

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