Staying in the Moment

Me and Kristin, living in the moment

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

All of us have given this concept thought at some point in our lives, either because we ourselves wish we did it better or because we are giving advice to people we care about who could use some help focusing on today.

I personally have struggled with this notion for much of my life. I have always lived in the future, working out in my mind what will be happening, instead of focusing what IS happening. But I am getting better and I have to be honest, I have cancer to thank.

When you meet and talk with a young woman struggling through breast cancer, you can’t help but look at life differently, realizing the wisdom behind this notion.

When you are faced with the horror of losing a young woman with breast cancer that you love, you find yourself focusing on right now because life is precious and you don’t want it to end.

I am also finding that the motto of living in the present is helping me through my journey of taking my body back from cancer.

For someone like me, who is new to the sport of cycling, all the equipment and the experience of sitting on a bike seat for six hours — focusing on the many hours to come as you ride towards your goal can be overwhelming.

But as my dear friend Kristin Westbrook always reminds me … that if you focus on the right now, it really isn’t all that bad. Actually, I have found that when you focus on the exact moment you are in and not how much more you have to go or a big hill in your future - the experience shifts. Suddenly you notice a cool bird flying beside you, or engage in a great conversation with a fellow rider, or just let your mind rest as your body works …

So, how will I make it from Philly to D.C. on a bike after only riding a bike six months, two years after a cancer diagnosis? WHO KNOWS!!! I am not going to think about it now, I will focus on today instead and know that each moment will be a step towards my goal of taking my body back from cancer.

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Categories: Taking my Body Back

Journaling for Better Health

A cancer diagnosis brings overwhelming feelings, a multitude of appointments, a sense of managing a second job for which the pay is fatigue, possible hair loss and a tired debit card laden with co-pays. As an oncology social worker and journal group facilitator, my goal with survivors is often focused on finding an action plan grounded in self-care amidst this flurry of activity.

The benefits of journal writing have been studied for over 25 years. Among those studies, included are ones focused on the benefits of journal writing with cancer survivors. Generally, the benefits have been positive.

If you knew that something as simple as writing in a journal for as little as five minutes might bring you some relief from the overwhelming feelings of cancer, would you give it a shot? If you knew that it is completely normal for you to feel triggered by walking back into the doctor’s office for a follow-up appointment, might you go a little easier on yourself?

I have heard survivors mention these following triggers coming up for them: walking past the infusion center; certain smells in the building where the doctor’s office is; and just going to park the car on the deck where they parked to go for treatment. Post-traumatic stress has been studied in cancer and I want you to know that you are in good company with others who have experienced symptoms like these.

Utilizing journal writing techniques can assist in healing and recovery from treatment and encourage a gentle grounding in the midst of the overwhelming experience of cancer.

In one of my cancer survivor journal writing groups, a big question which surfaced for the participants was, “Who am I now?” This came out of a technique called Lists of 100 created by Kathleen (Kay) Adams, the Director for the Center for Journal Therapy. Their journals led them to reframe that idea to, “I want …” I watched their lives change before my eyes. One participant, a young woman surviving breast cancer, completely changed jobs. Another’s relationship with his children, including a son serving in Afghanistan, transformed through writing and exchanging poetry.

Try this: Either dust off a journal that has been patiently waiting for you on your bookshelf or pick up one at the dollar store. Take five minutes to try one or more of the following prompts and then write for a few minutes about how it felt and what you noticed. Leave me a comment and tell me how it went. If you are new to journaling, please know there is no rule book. Your journal is yours and is a private relationship. The journal is your buddy and it will never, ever care what you write in it.

1: List: 10 Ways I Feel Safe

2: Describe a room in your house where you feel safe, comfortable and relaxed. Include as many details as you want. What time of day is it? What color are the walls? What photos are in plain view? What books are within reach? Is music playing? What is it? (You get the idea).

3: Here’s one to celebrate autumn: How will you celebrate and enjoy fall? Football? Pumpkins? Halloween candy? Planning a new, non-traditional dish to add to the spread for Thanksgiving? Jumping in raked piles of leaves? You tell me.

Remember to write feedback when you’re finished. And, please feel free to leave me a comment on the blog – I’d love to hear what surfaced for you!

A few references for you (email me if you’d like me to send you a PDF of any of these articles):

Adams, K., (1999). Writing as therapy. Counseling and Human Development, 31, 1-16.

Frisina, P.G., Borod, J.C., & Lepore, S.J., (2004). A meta-analysis of the effects of written emotional disclosure on  the health outcomes of clinical populations. The Journal of Nervous and Mental Disease, 192, 629-634.

Hampton, M.R., & Frombach, I. (2000). Women’s experience of traumatic stress in cancer. Health Care for Women International, 21, 67-76.

Kangas, M., Henry, J.L., & Bryant, R.A. (2002). Posttraumatic stress disorder following cancer: A conceptual and empirical review.  Clinical Psychology Review, 22, 499-524.

Stanton, A.L., & Danoff-Burg, S., (2002). Emotional expression, expressive writing, and cancer. In S.J. Lepore & J.M. Smyth (Eds.) The writing cure: How expressive writing promotes health and emotional well-being (pp. 31-51). Washington, DC: American     Psychological Association.

Ullrich, P.M., & Lutgendorf, S. K., (2002). Journaling about stressful events: Effects of cognitive processing and emotional expression.
Annals of Behavioral Medicine, 24, 244-250.

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Categories: Guest Bloggers

A Letter to Family & Friends about My Journey – Part IV

Pink EelephantLetter #4
March 7, 2011
A letter to my friends and family

It appears my Pink Elephant and I have kicked cancer’s butt and this will be our last email!

You have been incredible beyond words in your support and kindness about these Pink Elephant emails, which I used to voice my emotions (even if it was through an imaginary Pink Elephant) during the last six months.

So, as my imaginary Pink Elephant and I conclude our journey together, I feel it is only appropriate to give thanks where thanks are due … because we are only as ‘strong’ and ‘amazing’ as the people who love us.

First my parents … they dropped everything and came to NY without a thought to their own happiness and stood by Jeff and I for four difficult hard months. Mom and Dad – Thank you, from the bottom of my heart. You both saved me.

Second, my husband … Jeffrey held the heaviest weight of all in dealing with my cancer and my Pink Elephant day-in and day-out. Jeffrey – You are an incredible life partner, friend, and lover. I will forever be thankful for everything you have done for me. You are actually strong and amazing!

The final thank you I need to make is a bit more complicated and needs a little background to make sense.

When I was first diagnosed with cancer – even before my first surgery – I went to a support group for young women with breast cancer hosted by Young Survival Coalition (also known as YSC). It is a national nonprofit whose mission is to support young women diagnosed with breast cancer. I was more nervous about going to this support group than I was meeting the surgeon who was going to perform my double mastectomy – just to give you a sense of the fear and distrust I felt walking into a group of strangers that I was supposed to open up to!

I don’t think I will ever forget that evening – I had not met my Pink Elephant yet – and I’d only been diagnosed two weeks before. It’s bizarre to think back to how much I didn’t know about my future at that time.

The women in that room were outstanding and they blew me away. They were all going through their own battles with breast cancer, which clearly showed me a path to survival. They were full of compassion, but also anger at what they were forced to go through – which allowed me to also be both angry and compassionate. They listened, talked, shared stories of surgeries, and even showed scars and results of treatment. It was as if I was suddenly surrounded by people that new more about me than I did. And in a way, this group of women did.

Over the next six months these women became as important to me as sisters. While I’m sure I’ll know and love these women for the rest of my life – YSC, the reason I have them in my life, is the important thank you that I must make.

Because this nonprofit exists and is able to offer support to young women with breast cancer … I was able to find these women… and have strong and fantastic women walking with me every step of the way. I’ve spent over half my career working IN nonprofits with the hope of making a difference and this was the first time in my life that a nonprofit made a difference in mine.

It is not by random act that I am sending this farewell email from my Pink Elephant and me to all of you today….. it is very much on purpose. I have been waiting for this exact day because today I turn 37. My 36th year is finally over… today I start a new year, different yet the same, glad to be alive and cancer-free!

As I sign off – I hope each of you is as healthy, happy and fulfilled as you are capable of being. You are all strong and amazing in your own way and I know many of you are carrying your own Pink Elephants with enormous strength and perseverance – and I will continue to support you however I can.

As I conclude my journey, you all have my word that I will continue to give back and do whatever I can to ensure that no young woman ever feels alone when diagnosed with breast cancer because she isn’t … my Pink Elephant and I are here!!!

Signing off, with my greatest love and thanks,
Jen & her Pink Elephant

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Categories: YSC SYNC - Survivors

East Coast versus West Coast

I bet if we all took a look at our friends and where they live, we would have people close to us on BOTH coasts … and everywhere in between! Take me for example. I grew up in the Bay Area in California. I love my sweatpants, I wish could wear jeans to work every day, and I crave local beer more than I should. But I think somewhere the stork got lost when delivering me and I should have been born on the East Coast. The seasons calm my soul, the energy driven from so many people in a small spaces excites me. The “right coast” just feels right. That said – while I may never move back West – I will always call California home.

YSC is kinda the same way – but backwards. YSC started in NYC and built its initial community on the East Coast. Much of its culture today stems from East Coast traditions and styles, but like me, YSC has begun to call the “other” coast home, with the strong affiliates there and launch three years ago of the YSC Tour de Pink West Coast bike ride.

Now, don’t get me wrong – there are many places in-between where YSC has a powerful presence with outstanding volunteers who are deeply committed to ensuring that young women do not face breast cancer alone. However, as I train for my TdP East Coast (Philly to D.C.) and West Coast (Giant Bicycles in Thousand Oaks along the Pacific Ocean to Oakley’s world headquarters in Foothill Ranch, CA) rides, my brain is focused on the coasts.

Tour de Pink is YSC’s biggest fundraiser. And, as a result of all of the amazing participants who raise money to ride, YSC is able to invest in ensuring that young women are educated and empowered when faced with breast cancer.

The East Coast TdP three-day ride sold out within a couple months due to its popularity and long history (although people can still register for a one-day ride) – but the West Coast ride, our newest ride of the two, is only about half full.

I’m sure you all know AT LEAST one person on the West Coast and I’m also confident that if you are reading this, you believe in YSC. So my ask of you is simple: Would you please ask everyone you know on the West Coast to display the post below on their Facebook page? It’s a small action that will directly support YSC and our important cause.

Do you live on the West Coast? Have you been touched by breast cancer? Did you know young women also get breast cancer? If so, please consider riding, cheering or simply helping Young Survival Coalition spread the word about its upcoming YSC Tour de Pink West Coast bike ride October 12-14 in Southern California. Please pass this on to everyone you know on the West Coast and let’s see if we can sell out this ride to reach more young women with breast cancer. It’s as easy as sharing and reposting this link!!! http://www.ysctourdepink.org/site/TR/TourdePink/TourdePink-WestCoast?fr_id=1310&pg=entry

I know the West Coast is full of people who cycle for a cause. That is sooooo West Coast …especially in Southern California!!! I think the challenge is just getting the word out.
So please everyone – post either this blog OR the above post onto your Facebook page and let’s see if we can all sell out the West Coast ride, so YSC can raise funding to reach even more young women affected by breast cancer.

I need your help!

YSC needs your help!

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Categories: Taking my Body Back

Y-ME and Its Counselors Leave a Legacy of Breast Cancer Support and Partnership

Y-ME, one of the oldest breast cancer organizations, has closed its doors of service. While to some this is old news and for others it may feel irrelevant, for me it strikes a chord of sadness. For more than 30 years, Y-ME served as a great point of contact for anyone diagnosed with breast cancer. As the years fleeted, the organization became most known for its 24-hour live, multilingual support hotline. Thousands of newly diagnosed women were able to speak to a breast cancer survivor anytime – day or night. Hundreds of volunteers stood ready to serve as a support to someone who was “in their shoes.” In July, Y-ME ceased services and has subsequently filed for Chapter 7 bankruptcy.

There have been many articles written about the organization, the abrupt dismissal of staff, and its shutting down of services. Some reference the financial meltdown of ’08 and its impact on nonprofit organizations. Others question the need for such services during the changing technological times. Whatever the reasons, the doors are closed and the services are no more.

What is most relevant to me are the thousands of women who are currently being referred to Y-ME, who finally muster the strength to call, only to hear a message to call another organization. And the hundreds of volunteers who, because of their experience, have dedicated themselves to helping and supporting others affected by breast cancer.
As part of the community of breast cancer organizations, YSC is saddened by the loss of one of its own. YSC and Y-ME have worked together on numerous projects and programs to meet the needs of women facing breast cancer and those who love them. We’ve collaborated on numerous trainings expressly for young women and continue to use that experience to service our constituents. YSC is strengthened by such partnerships and remains dedicated to serving young women and engaging volunteers in meaningful ways. For those who were diagnosed as a young woman and received Y-ME peer support hotline training, we invite you to join our efforts to support YSC’s constituents. If you are interested in this opportunity, please complete this form.

There is strength in numbers. Although that number has been reduced by one, we are still strong – we are not alone. There’s a community of cancer organizations striving to meet the multifaceted needs of women with breast cancer. We acknowledge Y-ME’s role in raising the profile of breast cancer support services and YSC remains ready to serve and engage young women diagnosed and those that care about them.

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Categories: Guest Bloggers

TdP East Coast is 6 Weeks Away!

Tour de Pink East Coast is six weeks away.

When I decided to ride TdP last fall, I was so weak from all my surgeries the year before that I was not able to walk up a flight of stairs without pain. I hadn’t ridden a bike since I was a small child and had built up a fear of them over the years. I also wanted my body back. I wanted to feel strong again, like I did before the words “you have cancer” hit my ears.

Now here I am. The ride is no longer theoretical. I learned to ride a bike, built back the muscles I lost, and conquered a fear of bikes and turned cycling into something I enjoy. Those are not small accomplishments; they are actually big ones … but the reality is, I am terrified about the ride.

This past week I did two 25-mile rides and they were fine – I was proud of myself.  But in the back of my mind, I know they are not 200 miles. I thought I would be so much further than I am now. I had fantasies of doing long 60-mile rides all of August – that hasn’t happened. What if I can’t do it?

Looking forward, over the next six weeks I will be starting up my fall travel for YSC and only have a couple of more weekends to train, which is a bit terrifying. Where did the time go? Where did the summer go?

As YSC begins its ramp up for the fall and Breast Cancer Awareness Month in October, I know I’ll be swept up into the energy and excitement that comes with it – which is great. I’ll be traveling around the country doing what I love most: meeting other young women diagnosed with breast cancer … and many of them are also taking their bodies back from cancer by training for Tour de Pink.

I guess the point is – I need to remind myself that I have already done what I signed up to do. The ride is going to be hard, but if I get tired I will rest or even hop in a SAG (support and gear) van and go ahead to the next rest stop. I know that really the hardest part was actually changing my life and learning this body is still mine and I’ve made it stronger. It’s not actually about riding 200 miles, it’s about taking your body back from cancer – which I am proud to say, I have been able to do.

So I’m going to channel my fear about the ride into excitement … and my nervousness into energy. And, in six weeks I will be surrounded by family and friends to not prove that I could do it – but to celebrate that I was able to do it.

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Categories: Taking my Body Back

Battling Breast Cancer While Pregnant

Jennifer with Parker when he was six weeks old, circa March 2000.

My husband, Matt, and I were happily expecting our first child, thinking about nursery patterns and what life would be like as parents, when our world was turned upside down.

At 27, I had no family history of breast cancer and was healthy and busy climbing the corporate ladder. I found a lump during a self exam and showed it to my obstetrician. Thankfully, my doctor took it seriously and had it checked out. Surprisingly, some doctors dismiss young woman thinking they are too young for it to be breast cancer.

November 22, 1999, just three days before Thanksgiving, is a day I will never forget. I was 27, 22 weeks (5 ½ months) pregnant when the surgeon told me those four words, “You have breast cancer.” My head spun and all I could think was, “Am I going to die? Is my baby going to make it?” It was hard to understand how a baby could be thriving in my body, while cancer was trying to kill me. What should have been one of the happiest times in our lives was spent researching everything we could on being treated for breast cancer while pregnant. At the time there were just 40 cases in the national registry. All of the babies had been born healthy but, in many cases, prematurely. Today, we know that breast cancer is the most common form of cancer in pregnant and post-partum women, occurring once in every 3,000 pregnancies. In addition, nearly 4% of pregnancies are complicated by breast cancer, and 10% of breast cancer patients under 40 develop the disease while they are pregnant.

We visited with several doctors before making a final decision on treatment as the pregnancy complicated things just a bit. I am an overly organized, Type A person, so I needed a plan:

•    First – Surgery. I opted for a single mastectomy since I couldn’t have the radiation that is required with a lumpectomy during the pregnancy. I couldn’t have reconstruction at the time of surgery since my other breast was enlarged due to pregnancy. I also didn’t want to be under anesthesia any longer than necessary. (I had reconstruction four years later.)

•    Second – Chemo. My cancer was very aggressive (ER-/slightly PR+ and HER2+++), as it is in most young women and growing rapidly. Because of the aggressiveness of the tumor, I had to start chemotherapy during my pregnancy. There was a new drug, Herceptin® (trastuzumab), in clinical trials for Her2+ breast cancer, but I did not qualify with the pregnancy. The baby and I tolerated the red devil Adriamycin (Doxorubicin) and Cytoxan (cyclophosphamide).

Because I didn’t want to use my leave time before I delivered and needed to work as a distraction and for the income, I continued working, with reduced hours. The day after my last treatment, I unexpectedly went into labor five weeks early. I wore my wig in the delivery room to try to feel normal. It kept popping off, so I finally flung it across the room and let them deal with a bald pregnant woman. The doctor on call joked that we had matching bald heads. The room was full of neonatal doctors and nurses who anticipated that our son would need assistance. Matt and I both cried when Parker was born. He was perfectly healthy with a head of hair, which was our sign that he hadn’t been harmed by all of the treatments.

I didn’t want cancer to take away the experience of nursing, so the lactation experts worked dutifully with me, forgetting every time that I only had one breast to pump. Since I’d just finished chemo, they wanted me to “pump and dump” for at least three weeks. As much as I tried, my milk never came. It was just as well. I was tired and loved having Matt help feed Parker.

The precious baby we worried so much about is now a healthy 12-year-old that just started 7th grade. I know how fortunate I am to be here for his many milestones. I don’t take them for granted.

I am grateful for the profound impact YSC has made during the last 14 years. I was desperate to talk to another young woman who had gone through cancer treatments while pregnant when I was diagnosed, but it was hard to find someone in 1999. YSC and Hope for Two now connect young women facing this dreaded disease. My friends give my contact information to other young women, especially those who are pregnant with breast cancer. I am happy to help them and provide hope that they can get through this difficult journey.

We now know so much more about pregnancy during breast cancer and new targeted therapies are available. Progress is being made, but it’s still not good enough. I won’t stop advocating until we can prevent this disease from starting and spreading. Until then, I will be here to offer support to other women who, as one survivor so eloquently put it, have to, “wear my bra.”

Jennifer co-authored the award-winning book Nordie’s at Noon: The Personal Stories of Four Women “Too Young” for Breast Cancer (www.nordiesatnoon.com) with three other women who were diagnosed when they were 30 or younger.

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Categories: Guest Bloggers

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