, September 14, 2018 | More Post by

Peggy (left), her daughter, and her infant grandson (taken five years ago).

“I feel a lump.  I want you to get an ultrasound along with your mammogram.”

This was Spring of 2002. I was 45 years old. It wasn’t the “norm” to have a breast ultrasound ordered along with my mammogram. I felt fine. I was physically fit–went to the gym three or four mornings per week and stayed away from junk food. This wasn’t supposed to happen to me, but when the lump was felt, something inside me knew what it was. Colon cancer was what I was supposed to get since my mother and sister both passed away with colon cancer. Breast cancer??? No. It couldn’t be, and I wouldn’t let it. I went to the Radiology office to make my appointments. I wanted both tests done on the same day, and because of that, I had to wait two weeks. I was glad to have those two weeks because I wanted life to be “normal” for that time. I didn’t even tell my husband. I somehow knew that those two weeks would be the end of life as I knew it.

At this time of my life, I was busy working as an RN with another RN running our own case management company. I loved my work. I loved making my own hours and working out of my home. I told absolutely no one. I think that I was able to start working through the stages of grief, and I felt that I needed to do that so I could think more clearly in a few weeks when the shit hit the fan. I stayed busy—taking more classes than usual at the gym, meeting friends for lunch, making sure our couples’ group kept to our usual pattern of going out for Friday night dinner and game night on Saturday night. It was Spring, which mean both daughters were beginning to wrap up the school year. Prom, finals, plus whatever else came our way.

Those two weeks flew by and before I knew it, mammogram day had arrived. I was relatively calm, even though I understood what the doctor would find. My mammogram showed a lump (big surprise) and I was hustled over to sonography. As I laid on the table while the tech slid that camera over my chest, there was no conversation between us at all. She kept sliding back over to the right side of my breast and pressing harder until it hurt. The tech finally stopped and told me that she had to bring the Radiologist in. In the few minutes she was gone, my heart started thumping and my brain was running through all kinds of possibilities. The physician came in, introduced himself, and then he and the tech turned their attention to the sono screen. He took the camera and honed into the spot that by now was very sore. The two of them kept low voices and talked like I wasn’t even in the room. I finally had enough and pushed the doctors hand off me to sit up. I looked at the screen and saw a “monster” on it inside my right breast. I asked what is going on. The doctor told me that I had a lump and that I should come back in 6 months. OH NO!!!!  DON’T TALK TO ME THAT WAY!!!!

I said to him, “if I was your wife, mother, sister, or daughter, what would you tell me to do?” His reply to me was, “Go see a breast surgeon as soon as you can.” When I asked him why was he not saying that to me, he shrugged and left the room. I got dressed and asked for my X-rays. I could pick them up in a few days. This was long before there were digital images and I just needed a disc!

I went home and told my husband (who is a former Radiologic Technologist) that my films showed a lump and that I was advised to see a breast surgeon. I also told him that for now, we would tell our daughters that a lump had been found in my breast, but I wouldn’t really know much more than that until after I saw the breast surgeon. I said, “let’s not get worried until we know what we are worried about.  I think that satisfied the conversation at that time. Heck, our younger daughter had prom that weekend, and our older daughter was coming home to help with make-up. I’m pretty sure my husband and I talked about it late at night, but we sort of had that same last piece of armor in front of the probable diagnosis. I had a good friend, also a nurse, who had gone through breast cancer and she gave me the information about who she saw. My husband did some research and gave me a powerful YES, that’s the best place. So, that afternoon, I picked up the phone and made my appointment for a date two weeks later. Sigh… more waiting, but this time I had my husband and we both understood.

Stay tuned for more of Peggy’s story in her next post!

Peggy S.

, August 31, 2018 | More Post by

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” Romans 8:18

This blog will be a three-part series on my journey with the diagnosis; my pain, my tears, my fears, my faith! My first story begins with my journal and my talks with God during the month of my diagnosis.

September 2017 started as it always has. I work for a school system and the teachers are in a flutter, the kids are excited and it’s business as usual. Each year during opening instruction we select “one word” — you may be familiar with the book written by Jon Gordon, Jimmy Page and Dan Britton (“One Word That Will Change Your Life”). It talks about the “one word” meant for you and when you find it, live it, share it. Well how ironic that my one word September 5, 2017, was choices! I had no idea in the days ahead how many choices I would not have.

It is now September 15th, and the day has started like any other. Prepare for the boob squeeze, no deodorant and do not forget to wear a top and bottom so that you don’t completely freeze wearing that fashionable robe.

You do the routine; verify your name and personal information, and then you are guided to the “squeeze machine.” Nothing felt different; everything felt the same. Until… The tech asks “have you ever had an MRI.” I respond no. She’s like, “oh ok.” Still nothing felt different as I had been told before I have dense breasts. I finish up and was told, “you can dress now and if we need to re-screen someone will give you a call.” Nope, still not feeling anything different. I leave, go to work and proceed with a normal Friday — just waiting for the end of day.

Monday comes and so does the phone call. From this point on my life as I knew it prior to September 18, 2017, was about to change. “Ms. Spurlock, we’d like for you to come in tomorrow for an ultrasound.” September 19th was the ultrasound, two days later, September 21st, the biopsy, and from there comes that life-changing phone call on Monday, September 25, 2017, at 3:00 pm: “it’s confirmed, you have breast cancer.”

Not knowing what to say, I was like, ‘are you serious, so what now?’ I think I heard what he said but all I kept hearing was ‘you have breast cancer’. In the office with a couple of my co-workers, I called my mom, my dad, my sister Gayle and my wonderful fella, and those were the hardest conversations I’ve ever had to face in my life. I stayed strong, but everything inside of me in just seconds was broken into pieces. I called a few of my prayer warriors and talked with my nephew Justin later that day. Each one of them said you are not in this alone. I knew that they would all be there for me, but I also knew that if I ever had to lean on Jesus, now is the time.

As I was leaving work, I called my pastor. He prayed with me and said “Vanessa, you are going to want to remember each moment because God has a plan for you. Get a journal, write down everything and talk to God in your words.” I did just that. My Journal is titled, “I SURVIVED – My Talks With God!” I did not know what to say so that night I just prayed. The next day I think I was still numb, but I knew that I had a journey before me and although my family and friends would be there, I knew that I would need God every step of the way. So I began to write.

My very first post was September 27, 2017, at 12:45 pm. I used the lyrics of a song “be blessed don’t live life in distress, just let go and let God, He’ll work it out for you.” I continued to write, “God I get weak; build me up. Keep my mind stayed on you. Heal my body; I already know that you have, you can and you will. Thank you for blessing me and my family. I love you Lord and I am a SURVIVOR!”

From that day on it was so easy to write, to talk to God. I’d find myself throughout the day just writing my thoughts. Some days I would write and the words and tears would flow. Other days I’d write just thank you — for Your healing, Your restoration. A good friend (Karen) gave me a word to request of God. Lord I thank You for Your restoration. For removing from my body all things that should not be and for adding all that I need.

As I look back on those words, I referenced that to my health. As I think on it now, God did just as I prayed for. He removed the cancer, but He also removed some fears, removed some pain and added more faith, more courage and healing. For moments at a time I felt like my life was standing still; other times, I felt like my mind was in a whirlwind, but I continued to write.

Let me add that I did not share my diagnosis with many — very few to be exact. I didn’t want my story compared to others. I did not want people to think that I was dying and most of all, I did not want any negative energy directed toward my healing. I felt like I had to protect my mom and my dad, my family and their feelings of hurt and pain. I did not want anyone saying to them how bad how horrific cancer can be. Because guess what, it can! Most of all, I did not want my story to be their story. I wanted my story to be the story that God had just for me; JUST FOR ME! I had to believe that God knew my story even before it started so I had to trust in Him.

I knew that my faith in God was strong but some days I did not feel strong. Every day all I could think about was having cancer. The what-ifs. All the things you hear about: surgery, chemo, feeling sick, medications, work and yes, how will people see me. But, I still wrote. I found that my writing was beginning to heal me. It was allowing me to release the pain, the hurt, and the anger that I was feeling and I could release it all to God.

Although I had all of these questions for God I always spoke, wrote of my healing and my restoration. I figured that if I was requesting of God to do a great work I could not ask in doubt but I had to ask in a believing faith. My mom, my friends and my wonderful man would say, “Vanessa, you don’t have to be strong for everybody, we have shoulders for you too.” But in my mind, I was always the strong one. Always the one with the straight face. I can’t crumble because if I do then I don’t know how to be weak.

But I did crumble, I did break, but guess what I found out… that this was absolutely ok! That I was allowed to feel, to scream and to be human. In my journal, my SCREAMS were in CAPITAL letters. Some pages were dampened with tears but I’d still write.

As the month ended, September 30, 2017, at 7:00 am, I write: I’m awake and I thank you, Lord for a peaceful sleep. My mind is good right now, but I’m just scared of the not knowing. I know that you know it all so I really shouldn’t be worried. Tears fall as I again release my pain, fear, anger and hurt… BUT… I still thank You because You have this all in control and ALL power belongs to You!

My journal writing continues and some days I still feel as if I’m still in a whirlwind. But I’m thankful that my faith outweighed my fears. Yes, I was afraid of my diagnosis and each day I live with September 25, 2017. That was just the beginning of my story. BUT, GOD… that’s not the end!

My blog in October will be titled, “October: The Month That ‘Was’ All About Me; God’s Sense of Humor!”

Vanessa Spurlock

About me:
Richmond, Virginia, Here For the Girls Boober!
Diagnosed: September 25, 2017
Age: 49
ER/PR+ Her2- / BRCA-
Lumpectomy: October 19, 2017
Radiation: November 29 – December 27, 2017
Tamoxifen: January 1, 2018 – present

, July 02, 2018 | More Post by

Our “A Calendar to Live By” features 11 women we serve through Here for the Girls programs and their inspiring stories about their cancer journey. Sadly, July’s model, Shawna passed away one year ago this month from metastatic breast cancer, before the calendar was even published. This month, as her photo graces our wall, let us take time to honor her and all the women who have died of this disease.

Here’s is Shawna’s story as it appears in the calendar:

42, Diagnosed at 32, 36

3rd degree relative – no known genetic mutation

A devoted mom, volunteer, military wife, and former Air Force weapons loader, Shawna was vacationing at Disney World with her family when she felt a large lump while showering.  Nodules in her breast tested several months earlier had come back benign, but taking no chances, Shawna returned to her doctor. A biopsy followed by a lumpectomy revealed stage III breast cancer. She had chemotherapy, a bilateral mastectomy, radiation, and eventually, reconstruction. Four years later, she learned the cancer had metastasized to her liver. She has been in treatment ever since. Shortly after this second diagnosis, she and her family moved to Virginia where she found Beyond Boobs! Shawna shares, “The women of BB! ‘deal you in’ and make you smile—in the calendar, on Facebook, in the meetings. Just a smile. That’s what has helped me.” Usually averse to the limelight, Shawna said she applied to be in the calendar because “I have a story to tell,” and shares, “Obstacles are always there. It’s what you do with them, how you empower yourself and educate others that will get you through.” For Shawna, cancer has not been a death sentence but instead, “a sentence of life and the courage to live it.”

, February 13, 2018 | More Post by

At Here for the Girls, we are not an advocacy group — however, we absolutely encourage our supporters and our survivors to equip themselves with knowledge about laws that affect them and to become strong advocates for their own health. In order to help our blog readers do these things, we invited our friends at the Virginia Breast Cancer Foundation (VBCF) to share their knowledge and information about their advocacy efforts so far this year with the Virginia General Assembly.

In February 1991, five women met in an MCV support group. Stunned by a lack of research and progress in breast cancer treatment, they planned a Mother’s Day Rally at the Virginia State Capitol to bring attention to this devastating disease. The activist seeds of the Virginia Breast Cancer Foundation (VBCF) were sown that day, and VBCF was incorporated as a 501c3 non-profit in October 1992. VBCF seeks to educate Virginians about breast cancer to encourage screenings to improve early diagnosis and treatment outcomes and to advocate for improved public policy to enable Virginians affected by breast cancer to receive the best quality of healthcare while on their treatment journey. We work to provide Virginians with knowledge and a voice when affected by breast cancer.

Each year, VBCF hosts a breast cancer advocacy day at the Virginia General Assembly in Richmond with training for volunteer advocates so that state legislators hear directly from their constituents impacted by breast cancer. At our January 30, 2018 Advocacy Day, our breast cancer advocates met with over 20 state legislators to make their voices heard on the following legislation:

VBCF Priority Legislation 2018:

Increase Access to Healthcare for ALL Virginians – Support for HB 348

Expanding access to health insurance through Medicaid expansion will mean that more women will be able to secure breast cancer screenings and treatment. Every month Virginia loses an average of $142 million in federal funding. Since 2014, the Commonwealth has forfeited over $10 billion in federal funds, which could have been used to help uninsured adults, hospitals, and businesses. Most states have expanded their Medicaid programs. While Virginians suffer without coverage, 31 states and the District of Columbia are providing health insurance to uninsured adults. Those states are seeing significant health and financial benefits.

The Latest: Current debate centers around adding a work requirement for those receiving Medicaid.

Use of Medical Cannabis for Cancer Patients – Support for HB 1251, SB 726.  Based on The National Institute of Health’s National Cancer Institute information, “the potential benefits of medicinal cannabis for people living with cancer include antiemetic effects, appetite stimulation, pain relief, and improved sleep.”  HB 1251 and SB 726 provide for a practitioner to issue a written certification for the use of cannabidiol (CBD) oil or THC-A for the treatment or to alleviate the symptoms of any diagnosed condition or disease.  These bills in one form or another provide an affirmative defense to prosecution for possession if a person has a valid written certification issued by a practitioner for CBD oil or THC-A oil. Under current law, only the treatment of intractable epilepsy is covered by this defense.

The Latest: As of 2/5/18, both bills were passed by their respective chambers. Since the bills are identical, the steps forward are largely procedural: the bills will “crossover” to the opposite house for a vote, before heading to Governor Northam’s desk for signature. Governor Northam, also a doctor, is already on record in support of “Let Doctors Decide” medical marijuana laws in the Commonwealth. Passage of this historic legislation would make Virginia the first state with a hyper-restrictive program to adopt such a broad expansion.

Improve Protocols for Step Therapy – Support for HB 386, SB 574 to make step therapy better and safer for Virginians – Step therapy occurs when a doctor prescribes a medicine, but the insurance company requires the patient to try alternate, cheaper drugs first, with no clinical justification. Step therapy can delay patient access to medication, causing adverse reactions and allowing their health to deteriorate. HB 386 and SB 574 put an online process in place for health care providers to request overrides for step therapy protocols for patients for whom the insurer- mandated drug is clinically determined to cause adverse health events or be ineffective, as well as those who have already met step therapy requirements and ensures that providers are notified in writing if their request is denied.

The Latest: On 2/1/18, the House Commerce and Labor subcommittee voted to recommend to the full committee that HB 386 should be “passed by indefinitely” meaning the bill is dead for this session. On 2/6/18, the House Finance Committee voted to recommend that SB 574 be “continued until 2019 in Finance” meaning it will be considered during the next General Assembly session.

If you would like to actively support breast cancer legislation at the state and national levels, SIGN UP FOR VBCF’S ADVOCACY ALERTS. These brief email alerts are sent periodically – when your advocacy is needed the most. The Alerts will keep you up to date with the latest breast cancer legislation and provide the tools and information you need to take action.

, September 29, 2017 | More Post by

Freddi N. is the teenage daughter of a previous H4TG blog contributor; she shared this essay with us since it related to our current Pink Link Connect blog contest asking survivors to share their thoughts on genes and breast cancer.

“You are too young to worry about this.” When my physicians brush off my fears about cancer and my risk, I can’t help but feel like a prisoner on death row, anticipating the worst. Knowing too much about cancer can be good and it can be bad. Knowing what the future has in store for you can shape your present as well. Inheriting a genetic mutation that puts you at an 85% potential likelihood of developing breast or ovarian cancer is daunting. My mother and my maternal grandmother both tested positive for the BRCA2 gene mutation, which unfortunately indicates that I have a 50% likelihood of inheriting the gene mutation as well.

Men and women with this mutation tend to develop cancer at an early stage in life like the members of my family.  Knowing that I have a 50% chance of inheriting the BRCA mutation, I will educate myself on the depths of this mutation, explore my family’s genetic inheritance and investigate ways in which I can decrease my risk factors.

In my quest to unearth as much information as I possibly could about BRCA1 and BRCA2 mutations, I have found that, if in fact I do have the mutation, I have an 85% chance of developing breast or ovarian cancer at an early age.  While the general population tends to have only a 25% chance of breast and a 17% chance of ovarian cancers, my genetic makeup raises my odds quite considerably.

In fact, BRCA mutations are found most amongst members of my heritage, Ashkenazi Jews. Everyone possesses the BRCA1 and BRCA2 gene but a woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious mutation in the BRCA1 gene or the BRCA2 gene. BRCA1 and BRCA2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material.  If you have a mutation, you lack the proteins essential for cellular reparation. In my case, since I am too young to be tested, when I am of age, I plan to meet with a genetic counselor.

My maternal grandmother was diagnosed with stage 4 breast cancer at age 66. It was metastatic and her life expectancy was 18 months. During that time, she was tested for BRCA1 and BRCA2 mutations because her mother and family history suggested that there was a causal link to these mutations. Eight months after her death, at the age of 42, my mother was diagnosed with stage 3C breast cancer. She was asked about her family history of cancer and quickly remembered that her mother was tested for BRCA and was positive. She was told that she had a 50% chance of also inheriting the mutation. Her mutation was BRCA2.

In order to lower her risk of recurrence, my mother underwent a radical bilateral mastectomy with Tram Flap reconstruction, six months of chemotherapy, radiation and a total hysterectomy, lowering her risk to only 15% reoccurrence. In addition to a family history of breast cancer that automatically increases my risk, my family’s genetic background must also be taken into account when assessing my future actions or inactions. My paternal grandmother had colon cancer and both my grandfathers had advanced prostate cancer. These cancers are all linked to the BRCA mutation putting me at a greater risk…85 plus percent.

Studies have shown that no risk reduction strategies exist for children and therefore testing for the BRCA mutation may not happen until I am 18. This was a hard pill to swallow for my parents who resisted this ideology and sought research programs by major universities that are conducting studies on early risk reduction strategies for children of BRCA positive parents.

When I turned 16, my parents informed me that although we were not actually going to test to see if I had the BRCA mutation, we were going to be taking precautions for both my brother and I to reduce risk. A healthy diet and plenty of exercise can be the first line of defense against cancer and practically every disease. My dad is a certified nutritionist and he uses his expertise to guide our family. My mother is living proof that a good outlook and a healthy lifestyle can galvanize and propel you to live life to the fullest. I will not let the fear of the unknown paralyze me and will instead use all the tools available to ensure that cancer does not stand a chance in my body.

Throughout my life I have witnessed cancer take lives. On the other hand, I have seen the bravery and courageousness of my mother’s battle. I know now that I have a greater risk of getting cancer due to my inherited genetic makeup. This could serve me poorly and leave me depressed and fated or ultimately bring me closer to appreciating consciousness, spirit, life, healing and help me to become very clear about what I want from my life. If I am one of the “85 percent” I have already won the battle.

-Freddie N.

, April 27, 2017 | More Post by

Julia is a Boober! who was invited to attend our “Renew, Restore, Retreat” this year and couldn’t make it. Since she’s many years out from her diagnosis, she had these thoughts to share about women who, like her, are at least a few years beyond treatment. We thought we’d pass along her insights and thoughtful words!

…I was diagnosed with breast cancer in 2008 at the age of 44 (stage 1, estrogen receptor positive).

I had a lumpectomy and radiation therapy. I think no matter how good or bad your diagnosis is, it is a very traumatic experience and very frightening. Somehow reason and common sense don’t quite work anymore. It’s a challenge to find a balance and normalcy. But during this journey and through many doctor’s visits I had some words that stuck with me for years. You were probably told that the survival rate is 12 years. In your state of shock you don’t really understand the meaning. For me, it sounded like a death sentence in 12 years. I could not find any reason or sense in these words. I went on a search for survivors of more than that. I became obsessed with it. I joined Dr. Reed’s support group, I went to a retreat offered by Beyond Boobs! several years ago, and took part at the event “Dancing with the Survivors.” But I never met anybody who was a survivor for more of 4 or 5 years. I know it would have helped me to know at least one long-term survivor.

Today I am cancer-free for 9 years. My check-ups have been all good so far, and I feel good. Besides minor long-term side effects from radiation (times of fatigue, sudden pain attacks in the area of radiation), I have a normal life. I also learned that my grandmother had breast cancer in her 60s (which I never knew), and that she died of old age. Without knowing, I had a long-term survivor in front of me. She passed away over 30 years ago, so she could never tell me her story. There is a life after breast cancer, and there is a very good chance to live a long life and grow old. I don’t worry about numbers any more. I try things that I always wanted to do. After “Dancing with the Survivors” I continued with ballroom dancing and now I am competing with my new husband in Standard and Latin ballroom dance. My second dream is to have my own business and I just started to work as a freelance Graphic Designer.

I met a lot of other survivors who also struggled with the “12 year thing”. Don’t focus on this, it only means that today’s survival rates are very good. Every person and every diagnosis is different, but with today’s treatment options we all have (in general) the best chances.

It is okay to worried and to be scared. Don’t let anyone tell you how you have to feel. You can grieve as long as you need to, and then you are ready to move on. This is your life, and you set the rules. You need to let out your grief and sadness to get your strength to fight. Beyond Boobs! is an amazing group of extraordinary women and I can’t thank you all enough for the support you give to each other.

Hugs and Love,

Julia

, April 20, 2017 | More Post by

I am not a doctor, only a Lymphatic Fanatic. I am a 10-year breast cancer survivor with Lymphedema in my right arm. I am one of the 30% of women who will get Lymphedema as a result of a compromised lymphatic system due to surgery, removal of lymph nodes, and radiation. In fact, all breast cancer patients and survivors are at risk if their lymphatic system has been compromised from any of the aforementioned treatments for breast cancer. I know this because I have done my research. Like some of you, I have thoroughly researched everything to death!

Research can be good. Being an informed patient is tantamount to recovery. Being your best advocate and striving for risk reduction and prevention of further disease and illness is our global goal and responsibility.

Like everyone else, I have a busy life and many goals. One of my goals is to exercise more because we all know that exercise plays a huge part in lowering our risk of recurrence. But does exercise conflict with people who have Lymphedema?  Is it recommended that we not do “too much?”

While it is true that not all individuals who have had lymph node disruption (surgical or radiological) will develop Lymphedema, until physicians can better predict who is at greater risk for Lymphedema, a slow and progressive approach to exercise is advisable. In fact, working up to a level of exercise that promotes fitness while avoiding exacerbating the Lymphedema is a good goal.

Exercise for Lymphedema may be beneficial, however the question is how much is too much? That is very individual. It is important that any exercise program be gradually progressed to avoid sprain/strain. More importantly, a slow progression allows the individual to monitor their affected limb or limb at risk for any sensation of aching or fullness that could indicate an overwhelming of the lymphatic system. I love yoga. That is my favorite exercise. Sometimes, however, I notice my arm swells more or begins to feel heavier than usual. It is at those moments that I reel myself in and weigh the benefits of either changing my pose to accommodate my arm or possibly suffer consequences of too much strain and eventual additional swelling. Over the past years, I have learned my body and specifically the cues it sends me. We all must learn and listen to our own bodies.

One fact is certain…. exercise for Lymphedema is best done with compression on the affected limb. Compression garments actually provide a new “tight” skin for the muscles to contract against, assisting in pumping the lymph out of the extremity into the central circulation. When Lymphedema exists, the remaining lymph vessels that are functioning are working double time to try to carry the load. Wearing compression bandages/garments provides support to the skin and to the lymphatic vessels directly under the skin, called the superficial lymphatic network. It is these vessels that help to carry the load when the larger vessels have been cut away from the lymph nodes or have been damaged.

Cancer gave me a whole “New Me.” I may not be able to play tennis anymore, but I can certainly achieve my exercise goals nevertheless. Become informed about Lymphedema if you are at risk.  Recognize that certain types of exercise are considered higher risk than others for individuals with Lymphedema. For example, high speed activities like tennis, bowling and racquetball, place more stress on our arms. In my case, tennis was “too much” for my affected arm.

Unfortunately, even the guidelines put forth in the “Risk Reduction Guidelines” of most Lymphedema Centers and Research Facilities are “anecdotal” at the present time, because of the lack of controlled double-blind studies to prove their efficacy.  In addition, some medical professionals have taken the position that the individual with a limb at risk (or with Lymphedema) should go ahead and pursue whatever exercise/activity they wish and “see what happens.” What they fail to tell us is that, Lymphedema is a chronic condition, which, presently, has no cure.

So as you strive for a better “you,” strive to be informed about Lymphedema and ways to lower your risk as it pertains to exercise.  Always be aware of your arm and any possible changes after exercising and for goodness sake, wear your compression garment!

Peace and Veggies,

Carolyn I. Newman

(Carolyn is the President of Warrior Wear, Inc. (www.warriorwear4u.com), and graciously shared this post with us.)*

 

*Here for the Girls is grateful for our guest bloggers and by sharing their experiences is not promoting or endorsing any particular products or services.

, March 01, 2014 | More Post by

Dear Friends,

When someone is diagnosed with cancer, the effect on the patient is pretty obvious, and sometimes we forget how much and in what ways the diagnosis may impact the family members and friends.  In this school assignment  to write about a first time experience,  Jacob opens our eyes to what he felt when his mother, Angel, went through breast cancer.  We are grateful that he allowed us to share his essay.  We think Jacob is pretty amazing, and we are sure you will agree after your read his words.  

Hugs, Mary Beth

While I don’t like to talk about this often, as it makes me feel like I’m “boasting” about a struggle that was not truly mine, I’m also often told that it’s a little uncaring to not note my part in it at all.  So, for my essay, I will be writing about my first experience with breast cancer in my family.
Before my mother was diagnosed with breast cancer, I don’t think that anyone in my family (including me) knew that much about cancer, other than the basics: That it has no “cure” yet, that it kills a lot of people, and that a lot of people are working to find out more about it.  So, when the news hit, it significantly changed how we saw the disease and, in a way, the world as a whole.30072_1490615910064_7480650_n

It was April, 2010, when I was told that my mom was diagnosed with breast cancer.  I was in the 7th grade, and was only 12 years old at the time, so I didn’t really know how to react.  She said that she was actually fairly lucky, since the cancer was found on a routine mammogram, and it could be removed.  We found some comfort in this, but we still were very scared.  I had no idea what I could do or what would happen, but I still tried to help her when I had the chance.  She tried to comfort us by doing things like bringing home books on how to deal with cancer in the family, ranging from very factual booklets, to childish picture books, but they never really helped me.  While I did care, I didn’t want to read about it when it comes to how it would affect me.  While I had full faith in my mother overcoming the disease, the books only felt like salt in the wound.

Her treatments carried on into high school, and here’s where we all got to see its effects first-hand.  They tend to make cancer treatment out to be much simpler than it actually is.  Cancer treatment is made out as just chemo, radiation, and hair loss, when that is only part of it. 33470_1661257295992_3735872_n There were many days where my sister (who was about 7 years old at the time) and I would have to be home alone because mom was in the hospital, and dad had to make sure she was okay.  When she was home, she was no longer as energetic as she was before.  She walked around in a half-asleep state, and didn’t have the energy or strength to preform many basic tasks.  For the most part, she may as well have been bedridden.  As the time went on, we got to see all her hair disappear.  When I say all her hair, I mean her eyebrows and eye lashes as well.  She went from having long brown hair, to lacking all the subtleties you would expect of the human head.  The strangest thing was that this was the easiest part of it all.  We all even found humor in the situation, in how silly it was.  My mom even joked about how she “now knows how a newborn baby feels”.  You could always get fake eyelashes, draw on fake eyebrows, and get a bunch of silly wigs and hats.  However, you could not get a replacement for all the pain that the treatment makes your body feel, nor could you get back the energy that it takes away.

To make matters worse, my dad works in the Navy, and had to deploy a few months after my mom was diagnosed.  Combined, these two things had a very powerful effect on everyone.  Throughout all of this, I tried to not let it affect me.  I told people at school, both friends and teachers, but I tried not to bring it up often.  This wasn’t only that I didn’t want to talk about it, but also because it felt like I would be making an excuse at the expense of someone else.  My mom was the one suffering, while I was perfectly okay.  To me, claiming that it affected me academically would be faking a broken arm after seeing the attention that the person with the real broken arm got.  I did care about my mom’s health, that’s why I didn’t want to undermine it by complaining about my “suffering”.  While it did affect me heavily, it would have been arrogant for me to “take credit” for the suffering that was not experienced by me.

Eventually, my mom was able to overcome the cancer and successfully had it removed from her body.  But, this taught me another thing I didn’t know about breast cancer.  A lot of surgery goes into attempting to bring back healthy tissue that was removed.   The most surprising thing was that the reconstruction surgeries are the ones that seemed to be the most dangerous.  While the chemo made my mom weak and sick, the reconstruction opened up the possibility of much worse things.  One of the scariest experiences I had during this was when my mom began to feel unusually sick.  We all watched her to make sure she was okay, even calling over a friend who was a nurse.  That’s when my mom and her friend realized what was going on.  The device put in place to help reconstruction had caused a major infection to begin to develop.  This meant that it must be removed, alongside all progress towards the reconstruction.  That was when I saw my mom go from seeming okay, to being in great sorrow and despair.  She didn’t want to have it removed, even refusing to go the hospital at first.  I didn’t understand this, and I’m not sure I even understand it now.  The tissue that was lost was not, as far as health goes, important.  It also didn’t make her appear strange in anyway, with even having many thing that would hide it if she felt otherwise.  But still, she seemed to initially choose her health over losing it.  This was the closest I felt to thinking that she was going to die.  She eventually went to the hospital and had it, as well as the staph infection, removed.IMG_8739

After a few years of treatment, the worst is now behind us.  However, the effects of the cancer are still present.  My mom is still going through reconstruction surgery, but nothing even coming close to before has happened.  The cancer has not returned, and I hope never will.  Her hair has regrown, and she has regained much of her strength.  She’s now active in the breast cancer support group “Beyond Boobs!” and has found a lot of people who have or are going through same thing as she did.  Everyone in my family is now more aware of the effects of breast cancer after seeing what it can do first-hand.

-Jacob (16 yrs)

02/07/14

, February 14, 2014 | More Post by

Hennahead2How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t
By Ami Dodson

One of the many challenges and frustrations of having a chronic condition that mandates wearing a visible device every day is when that disability is relatively unknown outside the breast cancer community. Imagine that you had diabetes and needed an insulin pump to regulate your blood sugar. Someone might catch a glimpse of your pump under your clothes and ask what it is. “An insulin pump,” you’d say, and the conversation could be over.

Now imagine that you have lymphedema and you must wear a compression sleeve every day, and a tighter compression sleeve when you exercise or fly in airplanes. Imagine you are in a yoga class, focusing on your Ujjayi breath, when suddenly you hear the instructor say, “You there – you in the back! Yes, you. What’s that thing on your arm?”

Flustered and aware that a room full of strangers is now staring at your misshapen figure, you stammer, “Uh, um, a compression sleeve.”

“What’s it for?”

“I, uh, I have lymphedema.”

“What’s that?”

“It’s a chronic condition that involves swelling of the extremities due to insufficient lymphatic fluid movement throughout the body secondary to removal of the lymph nodes and common in women who have had mastectomies to combat their breast cancers. Shouldn’t we all come out of Warrior Two now?”

Okay, that last bit is an exaggeration, but the first part of that exchange really did happen to me during a yoga class. The instructor was tactless and callous, but the real problem for me is that there is no easy answer to “what’s that thing on your arm?”

Variations of that conversation happen to me all the time, mostly by well-meaning people who assume I have sustained some minor injury, like spraining my elbow, and are legitimately concerned about my well-being. Although one person asked me if it was a cover to hide embarrassing tattoos. At a cocktail party. For my work.

It’s been a challenge for me to come up with something to say that is polite and clear, but also firmly conveys that this is not a conversation I wish to have. It’s never easy to discuss your breast cancer with casual acquaintances, and there is really no way to avoid going from “I have to lymphedema” to “I got it because I had a double mastectomy.” And yes, there was chemo. And yes, it was awful. And no, I do not want to hear about your second cousin twice-removed who had breast cancer and cured herself using only vitamins and meditation. Amazing!

All of this is compounded by the fact that the sleeves are ridiculously ugly. (Yes, I know about LympheDivas – they are fantastic, but unfortunately, they don’t fit me, so I’m stuck with the Medi brand sleeves, which are unattractive in a way that only a true medical device can be.) You can’t wear long sleeves all the time because it is difficult to fit your enormous arm into your regular size clothes. So you have to buy one size larger shirts to accommodate your arm, which makes the rest of your torso look like you either borrowed your mother’s clothing or don’t know how to dress yourself. So you start experimenting with sleeveless tops or tank-dresses and we’re back to the original problem of the ugly compression sleeve. And that it’s winter and you’re freezing.

So what’s a girl with lymphedema to do? My personal solution has been to invest in a lot of very sparkly jewelry that makes me feel glamorous no matter what monstrosity is on my arm. 12-27 Bracelet I am however, still looking for a good, short answer that would have shut down my embarrassing exchange with the yoga instructor.

Have some ideas? Fabulous. Leave them in the comments and let’s have a conversation on our terms, on our time, in our community. No downward-facing dog required.

Namaste.

Related Reading: On Lymphedema, Serial Killers, and Therapeutic Torture Devices

, February 08, 2014 | More Post by

My Lymphedema Experienceami-rectangle300x366
By Ami Dodson

One sultry morning in July 2010, I sat down to watch an episode of Dexter. I was about two-thirds of the way through my regimen of chemotherapy for Stage IIb breast cancer, and I found something soothing in the blood-drenched gore of early Dexter shows. Plus, if I took my pain meds during the opening credits, by the time Dexter had sliced, diced, and dumped someone in the Miami Bay, my pain would have abated and I would likely feel well enough to shower. Or walk to the mailbox, if I was really up for a challenge.

It Started with a Tingle

Anyway, on that particular day, as the glorious Michael C. Hall fried up his steak and eggs, I felt a funny tingling in my left arm. “Huh,” I thought. “That’s weird.” By the time I watched Dexter Saran-wrap some notorious villain to his table and commence dismemberment, I realized my left arm had swollen to gargantuan proportions. “Well,” I said to myself, “that was fast.”

I quickly scheduled an appointment with a physical therapist and lymphedema specialist after my arm ballooned up to four times its normal size. They took my measurements and said, “Yup. That’s lymphedema.”

Quick Lymphedema Tutorial

A quick tutorial for the uninitiated: Secondary lymphedema can affect anyone who has lymph nodes removed from nearly any part of their body. Women who have had mastectomies with lymph node removal are particularly high risk. When I had my double mastectomy in April 2010, the prevailing wisdom was that the surgeon would check your sentinel lymph node, the one closest to your breast ducts, and if there was evidence of disease they would remove the entire cluster from under your arm.

In my case that turned out to be 19 nodes, only the first one of which had microscopic disease. A few months later, the standards changed: Even if a positive sentinel node was found, surgeons would remove only those nodes that had evidence of cancer, leaving the rest in place. This less aggressive surgery significantly decreased the risk of lymphedema.

I’m not going to linger too long on the causes, risk factors, and percentages of lymphedema among breast cancer patients. You can read about those here (http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/patient), or here (http://www.lymphnet.org/), or here (http://www.mayoclinic.org/diseases-conditions/lymphedema/basics/definition/con-20025603). I’d like to focus instead on my own experience and my efforts to control my condition, rather than letting it control me.

Of Sleeves and Wraps and Machines

After a consultation with the lymphedema therapist, I was fitted for compression sleeves and taught how to wrap my arm in bandages. The initial treatment, an attempt to reduce my swollen arm to just two or three times its normal size, involved wearing “wraps” about 23 hours per day. These wraps made my arm look mummified and were a colossal hassle to put on, take off, wrap up, wrap off, etc. I was “fortunate” my first flare-up was over the summer. It is impossible to put a sweater on over these things. 09-12 Lymphadema Bandages I also had to see the therapist every day for an hour, four or five days per week, for manual lymphatic drainage. And I had to learn how to self-massage my arm in order to move the collected fluid out of my arm and into the rest of my body.

When the lymphedema got really bad, I was fitted for a Compression Machine. (See photo.) This torture device involved lying perfectly still for an hour while a series of tubes and air pressure pumps massaged my entire left side. Creepy, weird, uncomfortable, and unsustainable. How many moms with kids under the age of five do you know who can lie still for an hour a night before bed? That’s right: none.compression-machine2

Chronic but Survivable: Time to Thrive!

Finally, after months of intensive therapy, daily maintenance, endless doctors’ appointments, and chronic pain, my lymphedema stabilized. I still wear a compression sleeve every day, but I’ve stopped wrapping at night and using the Machine. I have flare-ups when I fly long distances or when the weather turns hot and humid. The pain is chronic but manageable.

Now, three years later, my lymphedema is under control but by no means resolved. After that dark day in July, I commenced what would be a long, difficult, painful journey toward managing a chronic condition. A journey that, unfortunately, I am likely to be on for the rest of my life.

BUT! I am alive and intend to stay that way for many years to come. The lymphedema is a bitter reminder of what I went through to overcome breast cancer. But it’s also a reminder that I did come through. I did survive. And I will continue to thrive.

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Next post! Next week I’ll share some lymphedema tips and tricks and offer some photos of my favorite compression sleeves.